I humbly would like to take this opportunity to express gratitude to Cairdeas International Palliative Care Trust in a very special way, from the bottom of my heart. I am grateful for the gracious opportunity to pursue a Bachelor’s Degree in Social work and Social Administration from Uganda Christian University.
My greatest achievements during my studies have been excelling with good grades and becoming a professional Social Worker. I can now apply the theoretical social work knowledge and skills so as to support and help the patients and families with palliative care needs better.
It has been a wonderful experience for me where it has broadened my knowledge base in applying the practical skills, procedures, techniques and methods being used in assessing social needs of patients with palliative care needs.
It has also contributed to my development as a person where I have been able to demonstrate abilities in problem solving, communication and counselling of clients’ with palliative care needs thus making a difference in the lives of patients and families.
“You are indeed very unique and special to me. I had never thought I would ever have the opportunity of going back to further my education but through your support this has been possible and a success! May God bless each one of you for contributing towards my studies. Thank you for loving me, you are God sent”.
I now await my graduation which will take place on the 22nd October 2021.
Our very dear Ian Robinson is running the The Great North Run this Sunday in order to raise funds for two charities - one being Cairdeas and the other Care for the Family's Bereaved Parents Support.
Here is a message from Ian: The 2020 Great North Run (40th) was meant to be my challenge for last year (my 60th). My 60/40 challenge. However, COVID moved it on a year to my 61st. Last year was also 16 years since my son Peter died, the week after this pic was taken in 2004. He's now been gone longer than he was with us, which somehow feels significant. That year is also the last time I ran a half marathon, so building up to it has been a challenge. So I'd love you to support me in my challenge by supporting one (or both) of my favourite charities. "Cairdeas International Palliative Care Trust" (whom I currently work for) and "Care for the Family's Bereaved Parents Support" (whom I volunteer for, along with Janet, my wife, as a befriender). I've provided more details about these charities on the respective charity pages in my team page along with links to their websites. Thanks so much for supporting me in my 61/40 challenge and supporting those in desperate need who are supported by these two wonderful charities.
Please check the link for all details, spread the word and help Ian achieve his fundraising goals for the two charities! Good luck for the run, Ian!
We were delighted to be awarded one of the UK government #smallcharitieschallengefund grants in February and are busy working with our partners, Peace Hospice Adjumani and the Palliative care Education and Research Consortium in Uganda to get the maximum benefit for the people of Obongi and Adjumani districts. Our grant official title is 'Empowering communities and health systems to address health related suffering in host and humanitarian settings through capacity building and integration’ and will focus on understanding the experience of those living with health-related suffering and working with community and health leaders to build capacity and improve care. We are building on a previous work with the same partners alongside the Ministry of Health which focussed on Adjumani District only.
Uk Minister for Africa James Duddridge said: “I am delighted that Cairdeas is using the UK Government’s Small Charities Challenge Fund to be a force for good in the world by helping some of the world’s most vulnerable people. “We are committed to supporting Uganda’s ongoing development, while providing urgent, life-saving humanitarian support to refugees and those in the greatest need in the country.”
Obongi and Adjumani are both districts in the North of Uganda bordering the river Nile. They are close to the South Sudan border, a country that has seen decades of conflict before gaining independence from Sudan in 2011 and then a grinding and brutal civil war. Refugees have fled and many have found a welcome in Uganda, one of the countries with the highest levels of refugee and migrant populations. This has not just been a government policy of welcome but has also been reflected in the local population of the neighbouring areas...which also include the Democratic of Congo where repeated conflict drives refugee numbers. There is much to learn about how refugee as seen as brothers to these rural, poor populations that are rich in humanity and where there is 1 refugee to every 2 host population in overall numbers yet little conflict.
Over the next 2 years we will share experiences of working together and some of the people we meet and places we visit. Let me take you on a virtual visit to whet your appetite....drive with me many km from Kampala to the town of Gulu and then turn onto mostly dusty murram road till we reach the town of Adjumani and the warm welcome from our lead partner and friend Vicky Opia and her husband Solomon. We still have further to travel including crossing the mighty White Nile river to get to the district of Obongi. Already we have journeyed for 7 hours or so and it’s time to rest and eat amazing yams, fish from the lake, mangoes from the garden, sweet sim sim balls or whatever delights Vicky has prepared for us.... all to the accompaniment of Solomon’s choice of Congolese music.
Peace Hospice and the local Ministry of Health hospitals and clinics as well as the additional capacity for refugees supported by UNHCR and Medical Teams International have responded to the increased need. The one District Hospital in Adjumani which was without even basic x-ray and ultrasound is now better equipped and other smaller clinics are being developed into hospitals. The palliative care teams here started responding in a ground-up way to the needs. They took to their available transport...motorbikes...and travelled deep into the countryside faces tightly wrapped against the dust. They worked to find those in need and either bring them to the hospital or offer support at home. Peace Hospice was the only team doing home care and Vicky is the District lead for palliative care within the Ministry of Health and the Refugee joint health sector meetings. We have previously supported her to train health care workers in the hospitals and health clinics across Adjumani district. Our projects have all grown out of this amazing work on the ground and work closely with the community and health leaders. There is good news that the previous DHO for Adjumani is now an MP in Obongi. Dr...will bring his wisdom to his new role I am sure but he is also very aware of the need for palliative care. He was pleased we showed the level of need in our last piece of work and keen we extend this to the host population so we will eb carrying out another piece of research to identify people living with chronic illness at village level and find out the extent of their need. This time we will be delving deeper into their experience of distress since so many are suffering the effects of chronic trauma.
Key to any community change is local initiatives and leadership. We will be training family members and village health teams but also listening to them and finding out the realities of their situation and the ways they have found to address their needs. This ground up approach is crucial and ensure we will all be learning. WE will be using interviews, photographs, mentoring and home visits as we seek to understand more deeply and help design training and research to build capacity and improve the care. This work will have relevance far beyond this setting.
What reception will we get? I have experienced the warm, openhearted nature of so many despite the many challenges of daily life. Problem solving and imaginative use of scarce resources is a way of life. The Governmental and non-governmental organisations do realise the problem of chronic illness and are seeking to meet the needs but lack evidence for planning, needs more trained workers and also want guidelines and processes. The latter links with national work between the MOH and the Palliative Care Association of Uganda to develop a national roll out of information systems and palliative care services. We will be seeing how the health system is managing thus far.
Palliative care in humanitarian settings is increasingly being recognised as woefully inadequate and requires cross sectoral working and crucially ground up approaches. PallCHASE is a global network seeking to raise awareness and develop support systems for improving access to quality palliative care in humanitarian settings and I am delighted to be serving on their executive. I know the work from the Transform Obongi and Adjumani will help shape and inform global initiatives. Please look out for the first in a new series of webinars from PallCHASE to be announced soon.
Lastly, let me share the words of the nursing officer at Adjumani hospital. She was honest that she was unaware of the scope of palliative care and left it to Vicky. However, after seeing her staff trained and hearing from families about the impact, she changed her mind completely. She said '‘Someone needs to speak for the voiceless. When help comes, people change. It is like losing hope — then hope appears suddenly like the sun.’
Bringing hope, bringing joy and always learning more about our common humanity.
For more information see www.cairdeas.org.uk
Obongi district..Adjumani just across the Nile
Sam, Peace Hospice nurse, on his bike is a kid magnet
Sam on home visits; communal and cross generational
Crossing the Nile...there is a ferry for more regular use
Unusually for this time of year I am in Scotland and this morning has a wonderful frosty walk up Blackford Hill in Edinburgh. In the early morning half light passers by, many with excited dogs careering around, greeted each other and said 'is it not beautiful' and 'I'm so lucky to see this sunrise'. The joy of sharing unexpected beauty with stangers.
So many are seeing 2020 as a year to write off, to 'coorie down' under the blanket of snow and of too many challenges and losses and hardships. Many of you will have experienced so much loss and grief, fear, distress and now simply feel overwhelmed. For many these challenges will move into the next year as the impact of the COVID-19 pandemic and what is being called the syndemic of the health care and economic problems carry over and may even increase. This has been a time of global challenge yet it has not affected people equally. Our health systems in the UK and other high income places have been almost overwhelmed but what of places where the basics of health care are a challenge. We may have had more than a glimpse into these realities. In the far north of Uganda Vicky Opia has been working in a critical area with rural populations, refugees and migrants and border movements that have led to a high COVID-19 incidence. In Kampala, COVID-19 numbers were slow to rise but are peaking now but what of the numbers needing cancer treatment or even basic food when your daily wages have been lost or struggling to work in the midst of a oandemic without PPE or safe transport; thansk to the PcERC team for all they do (see earlier blog). India with so much to give this world has struggled to manage the impact of COVID-19 on it's huge and diverse population. Think of our brothers and sisters in Gaza, trampled and constrained by 13 years of siege and lockdown, and now with COVID-19 numbers rising and health systems collapsing. We have also seen amazing global solidarity as we sought to face this pandemic together and learn much more about what it means to be truly global citizens. I have shared this before but it still rings with hope; an editorial by Lukas Radbruch et al in The Lancet in April said ' The call to fully incorprate palliative care into global health could finally be realised in the urgency of this pandemic. If so the COVID-19 pandemic will have catalysed medicine to better alleviate suffering in life and death.'
In palliative care we journey each day with those who face grief and loss at a personal level and together seek to find strength, courage and hope...while facing our own powerlessness and vulnerability. How do we hold these places of uncertainty and challenge? Where do we go to find meaning and hope? For each of us this will mean different things as we reach out to our places of resilience and strength or find new ways of making sense of life. I have so appreciated a daily Northumbrian Celtic prayer cycle with a group of like minded people to centre and reflect each day. We need those places of stillness and openness to one another. I was discussing on a webinar recenlty the incredible thread of our common humanity throughout this historic year and my colleague from South Africa explained he has learned that it is in those places of shared vulnerability we see our common humanity. Our training programme with PalliCOVIDKerala and Pallium India (see earlier blog) has been a place where people shared their vulnerabilities; at times up to 100 people from across many states and countries yet finding and holding those places together. One saying 'I will be more compassionate to the patients and high risk groups and to myself'. Some of our Cairdeas Faculty have been teaching in a new programme with Mercy Ships and we have seen people really thirsty to learn even if internet, civil unrest, monsoon rains and a myriad of other challenges got in the way. Our IUG medical students, whom we sadly only met online in Gaza spoke of the values that were important to them #empathy #dignity #listening #hope #trust #kindness with one student saying 'we will be as you think of us'
If we are to be vulnerable then we need to know we will be met with kindness. We have seen extraordinary and simple acts of kindness. From top chefs changing their restaurants into free food for key workers, to makeshift kitchens to feed migrant workers...from rainbows in windows to music played outside hopsital windows and in lockdown streets.to neighbours caring for the vulnerable person in their community and faith groups finding new ways to reach out to those most in need when unable to gather together. We have seen innovative and imaginative ways to share love and care and have realised how much we took a simple hug for granted.
As this year draws to a close I wanted to share some of the images of beauty and kindness that have touched my heart this year. We go into a New Year with stillness and hope to embrace the many new opportunities opening up and the joy of working with partners accross the world in a common vision. Here is a beautiful blessing attributed to Theresa of Avila who lived in the 16th century and which I have been reading in the middle of each day this year. 'Let nothing disturb thee, nothing affright thee; all things are passing, God never changeth! Patient endurance attaineth to all things; who God possesseth in nothing is wanting; alone God sufficeth.'
Hello all, I thought it was about time that I introduce myself to the Cairdeas community! I’m Sophie, a university student from the North-East, and I’ve been doing some of Cairdeas’ fundraising and communication work for little over a month. This year has been difficult in so many ways which is all the more reason to be proud of what has been achieved and to thank you – our supporters – for your continued support despite whatever challenges you may be facing yourselves.
Although most of us have been in lockdown, that hasn’t stopped the work. In fact, it’s more important than ever before. Countries where we work are facing huge economic hardship. Recently, we were able to give a contribution to PcERC in Uganda. Even relatively simple tasks like organising transport and meetings are made 100 times more complicated in the midst of a global pandemic and we have to think of alternatives. Fortunately, Cairdeas has a car and we were able to pay for a driver and petrol for those who do not have cars and were at higher risk of contracting COVID19 on public transport. This allowed 3 of our senior nurses and clinical officers to travel safely to work and visit their patients. It has also provided the driver, Jimmy, with a much-needed source of income as like mnay on daily wages there is no support system when all your income disapears. Here is what one of our most valued and senior nurses, Florence, sharing what this has meant. 'The entire PcERC staff would like to acknowledge our funders especially Cairdeas for daily transport contribution to attend to our patients. We thank you so much for protecting us from using public transport during this Covid 19 pandemic . The majority of the Ugandans do not use SOPs especially passengers using public transport. May God Bless You'
However, there is also not-so-good news. For small international development charities like ourselves, the biggest single challenge we face is funding. Many UK funders have amended their giving criteria to only support UK-based projects and the foreign aid budget is being cut. As a small charity, it’s important that we look to the future and keep exploring all of our options. Corporate fundraising has been identified as a potential avenue. If this is something any of our supporters feel they have a link to, we would be delighted to hear from you.
If I may, I’d also like to take a minute to draw your attention to our fundraising accounts on Amazon Smile https://smile.amazon.co.uk , Give As You Live https://www.giveasyoulive.com and Easyfundraising https://www.easyfundraising.org.uk. Thousands of retailers are signed up to these websites and when you make a purchase, they give a small donation to us at no extra cost to you. It’s a simple (and free) way of raising funds which soon mount up and allow us to keep supporting our partners. Next time you shop online, please do consider using these sites (you can also find the links on the website).
We welcome donations through our website and will be focussing these on COVID-19 related expenses and needs for our partners and of course if you can committ to regular support that allows us to plan ahead. 2 of our partners also have their own Globalgiving campaigns right now so please consider donating directly and even think of becoming regular donors as they seek to build sustainability. PcERC in Uganda are seeking to bring hope through their care for patients and families https://www.globalgiving.org/projects/covid-19-bringing-hope-through-palliative-care/ and Peace Hospice Adjumani are reaching out to refugee families https://www.globalgiving.org/projects/adjumani-palliative-care-fund/
Thank you again for reading our blog posts and following our work. Your support really does make a difference and I’m sure you’ll be delighted to hear that we are planning some exciting ways to get involved in raising friends and raising funds for the coming year!
One major role of Palliative care Specialist is to respond to management of complex cases of severe pain and other symptoms, sometimes in difficult to access locations. This story is from Vicky Opia, coordinator of Peace Hospice Adjumani and a Palliative Care Nurse specialist.
Usually, doctors and nurses who face challenges in the management of difficult and complicated pain, call for support of a specialist. In June 2020, a doctor met a child diagnosed with Esarcoma who was in agony of pain. We did not only initiated him on Morphine, but also discussed the importance of surgery to avoid metastasis. Two days later, the boy’s right limb was amputated after his consent was sought.
John (not his real name) is the 3rd born among 5 siblings. At 4 years, his parents separated and he grow up with his grandmother. John's father derived his livelihood from fishing to support the family and his grandmother did the house chores. John said, ‘’My dream while in primary 2 to become a doctor came to pass when I succumbed to cancer. I experienced painless swelling at the right lower limb from 2018 which stopped me from playing and I discontinued schooling in Primary 2. I was taken for treatment at local herbalists (painful cutting with razor and massaging) and also medical care from Obongi Health Centre IV in vain." The family of seven lives in a small dwelling house and derived their livelihood from fishing and sale of labour to buy basic necessities for daily survival.
Obongi District was separated from Moyo in 2019 to bring services nearer to the community. It is 35 km from Adjumani district including 2 km across the River Nile. It has 14 health centers and 1 hospital where none of the health workers have benefited from any palliative care training. Hence they lack knowledge and skills in management of palliative care cases making them find their way to Adjumani district for services.
John and family live in a village 10 kms away from Obongi town, thus coming for review requires them to cover 45 kms in 4 hours due to ferry cross over time. Besides, the current heavy runs have flooded the roads and the river banks hence blocking access for services. The available means for transport is the local canoe.
One day, I got a call in a middle of a meeting, when I picked, it was John calling me using his father’s phone. He explained, I am in severe pain and my father cannot raise any penny to transport me for review. Immediately, I reflected on his background, my heart lept with pain and passion having known how bad and risky the road is, and particularly the pain associated with the amputation, I knelt down and prayed. The prayers empowered me and I even forgot that this river has crocodiles, and other wild reptiles. I only recalled his voice saying, ‘’Sr. Vicky am in pain……… in pain.,,, and my morphine is finished’’, Dad has gone fishing, grand mum cannot manage to carry me up to Adjumani ,please help me’’ My passion for humanity beyond self-gain, and own life disappeared. I waded in the River to save John from Severe pain. While there, 3 other patients benefitted from our services.
John (not his real name) needed urgent pain relief after an amputation
The only way to reach John's village was to wade across the river
COVID19 has altered so much in our world and emphasised the global insecurity but also the global solidarity of our interconnected world. As ever, this momentous challenge is disproporionately affecting those on the margins. We see this challenge in children unable to socially mix or go to school but also with increasing food insecurity and anxiety. We see the liminal position of refuggees and migrants widened. The plight for prisoners, those who rely on daily wages, those with pre-existing chronic illness and of course the elderly is compounded by difficulties in accessing health care services and the sense they may be pushed to the back of any treatment priority especially when resources are limited. This has been called a 'tsunami of suffering' (Radbruch L, Knaul FM, de Lima L et al. The key role of palliative care in response to the COVID-19 tsunami of suffering. The Lancet April 22 2020) where integrated palliative care has a key role in communication and goals of care, triage and symptom control, psychosocial and spiritual care, end of life care and staff support. Initially palliative care was missing from most international and national planning but we now have growing support from the WHO and from state level governments as well as many passionate individuals and organisations.
With this background a group of palliative care colleagues based in Kerala along with myself as an 'adopted Keralite' formed PaliCOVIDKerala and started to plan how we could support and empower health care workers caring for seriously ill patients and families in Low and Middle Income Countries (LMIC). Our focus were the key areas where palliative care contributes as part of COVID-19 management approaches;
those who are COVID-19 positive and are deteriorating despite interventions
those with pre-existing co-morbidities impacting on treatment decisions
needs of the wider community including health care workers as they address the challenges of those affected by the COVID-19 pandemic
This has been an amazing journey. Our Faculty group is an important place for mutual encouragement and support and has expanded to include colleagues across India and internationally. We developed an open access e-learning programme based on 10 competencies that includes an e-book (now in the 3rd review process), 9 webinars from experts and a 5 session ECHO-India platform interactive course hosted by and partnered with Pallium India. https://palliumindia.org/2020/06/resources-for-palliative-care-in-the-context-of-covid19. We developed 11 algorthims to support practice for areas such as triage or managing distress. This format allows flexible learning where people access the sections most relevant to them and can adapt or adopt the learning in their settings. Our developments have been published in the Indian Journal of Palliative Care and Prof Chitra Venkateswaran will share more about this training in the upcoming EAPC Research conference online.
Daniel, Sunitha & Venkateswaran, Chitra & Sunder, Poornima & Nair, Shoba & K C, Rajashree & Manuel, Athul & Raghavan, Biju & Mm, Sunilkumar & Rijju, Vineetha & Vijay, Geetha & Rao, Seema & Prabhu, Anupama V & Parameswaran, Uma & Spruijt, Odette & Rajagopal, M. & Leng, Mhoira. (2020). Responding to Palliative Care Training Needs in the Coronavirus Disease 2019 Era- The Context and Process of Developing and Disseminating Training Resources and Guidance for Low- and Middle-Income Countries from Kerala, South India. Indian Journal of Palliative Care. 26. 8-16. 10.4103/IJPC.IJPC_131_20.
I am this week helping to facilitate the 17th batch of students and feel humbled to be part of this far reaching initiative. We have supported more then 700 health care workers from a range of disciplines directly through these courses from 10 countries including 25 states in India with 4 now having mandated this training by state governments. Many more have accessed and used the training materials in their own settings including translation in Bangla. This has included HCWs in rural areas such as Uttarakhand and Mizoram sharing mutual learning with those from Ghana and the Philipines...showing the opportunity we have from online learning. It has also become a safe place for us to think deeply about care with compassion and dignity, the importance of presence and value for each person, the need for effective communication and to address fears and concerns and the vital component of being compassionate with ourselves as health care workers.
Feel free to share this initiative and to register for one of the course via the Pallium India website.https://palliumindia.org/. We will also be posting the e-book and materials in our Cairdeas website resources section very soon. We are still to do a more formal evaluation but let me share some feedback from course participants.
'I will be more compassionate to the patients and high risk groups...and to myself'
'As a social worker I was happy to attend this course. Some of the most importnat points were communications, psychosocial and spiritual issues, grief and bereavemnet alomg with the importnace of the mental health of caregivers (us) during COVID19. We are forever grateful.'
'I came to know things that will help me serve patients more efficiently and also enhance my knowledge stock. The programme was wonderfully conducted by experts from various domains and strict time management made it smooth running. I would like to thank corresponding team for their support.'
'I learnt how to deal with the patinets with life-threatening disease and COVID-19 patinets uder palliative care with empathy, compassion and love.'
'The course in this situation is very effective for me because COVID-19 is a very new, unknown and scary situation. Training on how to handle this situation and how we talk with patients is very good and informative. Interaction sessions where we ask questions allowed us to clear out doubts'
'This program was very comprehensive and pratical. I highly recomend this to all who have an interest in inculding compassionate care in their pratice.'
Finally, this quote from a letter published with colleagues in the Lancet (Coughlan R, Leng M et al Lancet letter; Vol394 Oct 2019; Role for palliative care in advancing health in conflict settings) sums up this humanitarian approach to palliative care 'Suffering in illness and dying reminds us of the universal truth of our mortality and humanity. Palliative care is rooted in the recognition of our common suffering in illness and dying, our compassionate response to suffering, and our shared humanity. Fundamentally, palliative care seeks to ease suffering and uphold dignity'
We held our annual gathering on line this year on the 27th June. We had over 50 people join us from around the world on line. It was great to be able to hear about the great work Cairdeas is doing and supporting in different places and to hear from some of our partners about their work. We heard from:
Jacqui Mackintosh (deputy chair of the Trustees)
Dr Mhoira Leng (Medical Director) about the response to COVID-19
Dr Chitra Venkateswaran from the MEHAC Foundation (India) about the work of our India Partnerships
Dr Elizabeth Swain and her attendance at the GAZA PalCare Conference
Elizabeth Namukwaya, director of the Palliative Care Education and Research Consortium (Kampala)
Vicky Opia and Sarah Robinson (former UK Ops Director) about the work in Adjumani (Uganda) of the Peace Hospice
Ian Robinson (new UK Ops Director) on how you can support us
If you missed the gathering we have added videos of the zoom presentations from each of the speakers in the resources section of our website. You can access them via this link Cairdeas-gathering-2020
For any further information on our work, please visit our website at www.cairdeas.org.uk and follow us on Facebook and Twitter @CairdeasIPCT.
Thank you so much for your support in various ways that has enabled us at PcERC and MMPCU Uganda to continue to provide care to our patients and their families during this period. We have now raised $2,000 out of our $7,500 goal since the campaign started 7 weeks ago on Global Giving. (https://www.globalgiving.org/)
We remain grateful to you who have supported us thus far and those who will be supporting us in future.
Global Giving has now announced the July Bonus day which is a one-day campaign aimed at helping us to secure larger donations for our project.
So come Wednesday 15th July 2020 Global Giving will match all donations of $100-$1,000 as well as other award prizes!
Donations will be matched based on amount:
Donations of $100 - $499 USD will be matched at 15%
Donations of $500 - $749 USD will be matched at 30%
Donations of $750 - $1,000 USD will be matched at 50%
We are therefore calling upon you once again to come and support us on this day in whichever way you can. Please click on this link; https://www.globalgiving.org/projects/covid-19-bringing-hope-through-palliative-care/. You can donate as a one-off or monthly.
Also our normal Bringing Hope through Palliative Care project is still running where you can still give as a one off or regularly. Please click on the following link; https://www.globalgiving.org/projects/reducing-suffering-palliative-care-in-uganda/
Due to the COVID-19 lockdown, we decided that this year we would hold our annual gathering on line via Zoom. This gave us a great opportunity to welcome some of our partners and supporters, who would otherwise be unable to travel to Scotland, to join us.
We had an enjoyable afternoon on Saturday 27th June meeting up with each other and learning about what Cairdeas has been up to since we all met last year. Invited speakers were Dr Chitra Venkateswaren from the MEHAC Foundation talking to us about how they are adapting palliative care principles for the treatment of COVID-19 patients in India, Elizabeth Namukwaya updated us on the work of PcERC and MPCU in Uganda. Dr Elizabeth Swain talked about her visit to Gaza and the Palliative care conference for Palestine. Sarah Robinson and Vicki Opia told us about the work of the Peace Hospice in Adjumani district and Sarah’s visit there last summer.
Dr Mhoira Leng, our Medical Director gave an update on the ongoing work of Cairdeas during this last year and how it has been impacted by the COVID-19 pandemic.
We also introduced our new Operations director, Ian Robinson, who joined us in May.
For part of the afternoon, we were able to break off into breakout rooms to chat in smaller groups which enabled us to meet some of our partners in person as well as each other.
The afternoon was recorded on video, which you can find in the resources section of the website for anyone who missed the Gathering to catch up, or for anyone who wants to recap on the talks.
An opportunity to meet some of our partners from Uganda and India and welcome them to our annual gathering
We are delighted to announce that Ian Robinson has recently been appointed as our new UK Operations Director. Ian takes over from Sarah Robinson who has served faithfully over the last 18 months. We’d like to take this opportunity to thank Sarah for all the work that she has done for Cairdeas over the time she has been with us.
Ian recently retired from a long career as a chartered electrical engineer. He has worked on project work in the UK and overseas for heavy industries. He has also in recent years run his own consultancy business and brings skills in this area to our operation.
Ian has also been a volunteer for various organisations for many years. For quite a long time he has volunteered as a befriender for Care for the Family’s Bereaved Parents Support network and has also been involved in fund raising for the Brain Tumour charity, Hope for the Future, Parkinsons UK and the Mustard Tree Trust (Northumberland).
Ian is interested in music and plays in Morpeth community Jazz Orchestra. He is also a keen runner and was due to run in the Great North Run this year. Ian is a keen Sunderland supporter.
We want to appreciate and thank you for responding to our appeal for financial support and prayers during this period of Covid-19. We are delighted to let you know that our patient care has continued during this period and we are happy to bring you some updates.
Access to care and support
In the month of April, we cared for 22 patients in the hospitals as well as following them up by telephone especially for those that had been discharged or those that were very far away and couldn’t make it to hospital for reviews.
The main challenge for our patients is access care and follow up during this lockdown period is transport as a result of the ban on both public and private transport, so we have supported them to meet the costs of hiring a vehicle or motorcycle to get them to hospital.
And he says …… “I am grateful for the love and care. It has given me hope and courageto complete my treatment without being worried of missing any of the treatment”
Patient AY’s ray of hope during this difficult time.
“ ….Covid 19 has robbed me of my family support, no one visits and they rarely call because you will tell them of your problems. I used to get my social support from my family but all is gone. I live in isolation only my neighbor tries to help me once in a while. Everything is a struggle I never stop to think and worry that if I died now my loved ones will not even be allowed to send me off decently. It is a terrible time and the worst moment of my life. Please keep communicating to me it’s very reassuring to hear from people like you, you care. May God bless you and your team, I am now part of the palliative care family…”
Vicky’s (Peace Hospice Adjumani) motor bike riding skills have been so handy during this period as she is able to ride and get to her patients and be able to offer care and support.
Vicky says “……Amidst this pandemic we need to hear a voice that gives hope and care, this was made possible by the airtime! My physical presence with the patients in the community hasn’t only improved the quality of their life but it brought unity and peace in people’s homes because the pain is gone. Today those referrals made directly to Lacor or Mulago near pass via the Palliative Care Unit, friends even amidst challenges there is something for us to learn, lets trace it….. “ Vicky
My motivation comes from the smiles of Hope of my patients!
Toko Friday is our volunteer coordinator and he directly supports palliative care patients as part of the multi-disciplinary team, during this period he has continued to bring joy and hope to the patients and families, he provides psychosocial, spiritual assessments and support, helps patients navigate complex networks, refers patients to other services and offers practical support such as accessing medications and physical exercises.
However, during this period due to the government’s measure of a ban on public and private transport getting to the hospital he has to walk 18.6kms to Mulago and back in order to offer support to patients with palliative care needs and along the way he encounters different police checks and being a rainy season sometimes the heavy rains hinder him as he walks but because of the love and passion he has for the vulnerable patients he endures all this so he is able to continue offering the help and support even during these difficult times and moments and his motivation comes from seeing his patients smile with hope as they appreciate his care and support.
Being able to access internet during this lockdown has made a huge different and enhanced our interactions with other palliative care providers locally and internationally as we are able to join various discussions on issues emerging as a result of Covid-19 and the impact on palliative services, we have been part of these, learnt and shared.
Locally the Palliative care Association of Uganda (PCAU) has organized zoom meetings for the palliative care fraternity in Uganda, these are weekly discussions and are ongoing. Some of the topics we have discussed have included;
Psychosocial support for people affected by the COVID-19 pandemic
Cancer services in Uganda during Covid-19 – response.
On International Labour Day; recognizing and honoring all palliative care providers that have contributed to the growth of this specialty in Uganda.
The right to Palliative care Uganda, during the Covid-19 pandemic outbreak
The aim of these discussions to remain updated on what is happening, challenges, suggestions and support solutions to the Covid-19 pandemic.
The African Palliative Care Association also organized a discussion on; Strategies to engage African communities to be proactive in the prevention of COVID and we were happy to be part of it.
ICMDA webinar: Palliative care of Covid-19 patients in low resource settings by Dr. Mhoira Leng
These are just some of the sessions that we have participated in but they are so many and we have learnt a lot and continue to learn.
Our team is dedicated to providing the care and support to the patient and their families but they also need to feel protected and now that we got the equipment, we will do our best.
“We expect to offer good health for everyone and a comforting and dignified death for those departing” Florence
We thank you for your continued support.
God bless you all and please stay safe!
Ronald on his way to the Cancer Institute to receive his radiotherapy treatment
Vicki and her motorbike getting out to her patients
Toko walking to work
“We expect to offer good health for everyone and a comforting and dignified death for those departing” Florence
As I write this I am acutely aware the world has changed almost beyond recognition on the past few weeks. A pandemic much discussed in theory by the scientific world and the subject of movies has been unleashed by means of a tiny virus that has closed countries, pressed paused on economies, placed almost one third our world’s population into lock down. This outbreak has led to the deaths of tens of thousands…a number which is yet to rise.
In Uganda where I am also self-isolating and in lockdown I reflect that this country and its neighbours are well used to infectious disease. Malaria, HIV, TB and Ebola are well known here. Let me share a few statistics from 2018 that of course represents real people and real challenges. 37.9 million people were living with HIV and 770,000 died from HIV/AIDS. TB affected 10m worldwide with 1.5 million deaths of which 205,000 were children. Malaria, the often forgotten scourge in tropical climes, affected 229 million with 405,000 deaths and 67% of these were children.
COVID19 is affecting people accross ouir world….an infectious illness affecting people from all walks of life and all parts of the globe. This is a global humanitarian challenge with as ever those on the margins most affected. Money, position, power does not protect us and in many ways this demonstrated more than ever our shared humanity. It is also highlighting our common sense of helplessness. In low income settings the impact of COVID19 is deeply felt where there are no margins of resources. People who rely on a daily wage to provide food for families are struggling accross Africa. Transport blockades have affected migrant workers causing huge shifts of population in places like India. Struggling health systems in high income countries are well documented and the effect on poorly resourced health systems is only becoming clear for patients and families with many different health problems. Add to this refugee setting such as our partners in Northern Uganda working with South Sudanese refugees and in Gaza where they have already endured 11 years of siege and restrictions….can you imagine! We need to advocate for the ending of barriers, blocades and sanctions that are putting people are a greater risk than ever.
Let me tell you about Ronald, one of our most dedicated and loyal volunteers in the palliative care team in PcERC in Kampala. He was diagnosed with cancer just a few weeks before he married his sweetheart Christine at the end of last year. We have been raising funds and supporting them as he completed surgery and chemotherapy but now how does he access his radiotherapy? There is no public transport, private car costs more than a day’s salary but today even that is not permitted, so he is borrowing a bicycle for the 45 minute trip each day… not an easy feat when you are unwell. Yet, he still says ‘Many thanks for all the support….MMPCU has been like a family to me’.
Dr Peace Bagasha is a palliative care and renal medicine consultant in our team, and she told me about her journey to work yesterday. ‘I was stopped 10 times by police road blocks trying to get to the renal dialysis unit. Most of the nurses are unable to attend to patients as they live on the edges of the city due to housing costs and low wages and are now struggling to get to work. We are hopeful that stickers to permit essential travel will be made available soon.’
Vicky Opia, lead palliative care nurse in Adjumnai Hospital where a COVID19 positive patient has been admitted tells me: ‘People are afraid. Can you imagine, a nurse riding a boda to work in her nurses uniform was beaten?’
Where is the hope and where is the humanity at a time such as this? I think is it right in front of us, within us and amongst us. All over the world we see how compassion and courage and kindness are lifting spirits and making unique contributions. We see a shared common experience and greater empathy for our global community and standing together. Creativity for scientists, technology experts, health care workers and families has never been higher. We are thinking about what really matters, what is the focus and source of our hope. Many are looking outwards to how we can help and encourage each other. Many are thinking about our enviromnmnet and realising our interconnectedness with the health of our planet. Many are growing spiritually and faith in God. Candles stand in windows and rainbows colour our lives.
In palliative care this language of open communication even about the tough times in life is very familiar. We hold that place of uncertainty with those facing life threatening and limiting illness. We seek to listen, show compassion, offer skilled holistic help, journey with people through the dark times and the bright times, reveal and redirect hope and support people to build resilience.
I have been moved by this meditation from William Brodrick...'We have to be candles, burning between hope and despair, faith and doubt, life and death, all the opposites. This is the disquieting place where people must always find us. And if our life means anything, if what we are goes beyoind the walls and does some good, it is that somehow, by being here, at peace, we help the world cope with what it vcannot understand'
We are working closely with our partners who areare busy developing guidelines, working out how to work through non face-to-face means, doing direct patient care and advocating for effective PPEs and showing what amazing contributions health care workers and social and pastoral support workers can achieve. CairdeasIPCT is seeking to offer more financial support and if you feel you can partner with us many thanks. You can donate here. We are seeking to address the anxiety and fear with our partner Prof Chitra Venkateswaran, a psychiatry specialist in India, leading ways to train and support families using virtual means.
Let this be a time of standing together, talking to each other, listening, sharing our common humanity, caring for our neighbour, the stranger, the vulnerable and marginalised, the broken and fearful in our communities local and global. Let this be a time for all walls and differenecs to crumble and be brought down. Let us move forward with renewed hope, deeper joy and fresh purpose.
Godfrey knew he wanted to become a nurse when his father became sick and he didn’t know how to care for him. Living in Adjumani district in Northern Uganda, Godfrey studied to be a nurse. His favourite part of the job was speaking to the patients, particularly those with chronic illness. These patients seemed to have a different perspective on life; a unique sort of peace. He took part in a palliative care leadership course in the district facilitated by Cairdeas. Godfrey now volunteers for Cairdeas partner, Peace Hospice Adjumani. Peace Hospice works to provide palliative care services in the refugee settlements and to host populations.
I met Godfrey on a recent trip to Uganda. As Operations Director of Cairdeas I had the opportunity to visit Uganda to meet partners, visit patients and gain a deeper understanding of how the work of Cairdeas is empowering communities to provide palliative care to those in need.
I accompanied Godfrey to a home visit in Adjumani in Northern Uganda. Esther (name has been changed) was suffering from advanced cervical cancer. She was being looked after by her sisters and visited by the Peace Hospice team every two weeks. Esther was on high doses of morphine to manage the pain but was still experiencing some symptoms and side effects of the morphine. Godfrey gave Esther some advice on managing these symptoms, such as waiting an hour after taking the morphine and before eating to avoid nausea. As well as enquiring about her medication and symptoms, Godfrey checked in on the care Esther was receiving from her family and how she was feeling emotionally and spiritually. She explained that she was being cared for by her family, but also that she knew she wouldn’t have to feel the stress of loneliness because the hospice team will take care of her. Before we left Esther took the opportunity to practice her English with me. “At least I have laughed for today” she said to Godfrey in Madi as we left.
We then went onto the first refugee settlement, Pagirinya. Village Health Teams (VHTs) have been trained to identify patients with palliative needs and refer them to the Peace Hospice team. Godfrey and I waited under the shade of a tree as the VHT went to find the patient we were there to see. As we sat there, I was struck by how well established the settlement was.
Uganda has welcomed around 1.3 million refugees – the third largest refugee population in the world. A recent episode of the BBC documentary, The Displaced, followed Ashley John-Baptiste as he met some of the refugees settling in Northern Uganda. “Instead of fighting the tide of displacement, Uganda has become renowned for its welcoming refugee policies”. The settlements I saw weren’t dissimilar to the host villages – mud hut homes, vegetable patches, clothes hanging out to dry, goats and other animals running about. When being forced to leave one’s home, those crossing the border into Uganda are welcomed with a dignified space to set up camp until it is safe to return home.
The first patient we saw was a man with painful swelling in his legs. The swelling had started in his left leg and spread to the right. He was receiving pain killers from the Health Centre which is run by UNHCR – the United Nations refugee agency. He had been offered a biopsy but couldn’t afford the cost of the results. He didn’t feel he was getting any support from the community. “You are not alone, we are here for you” Godfrey assured him. The patient may be transferred to a hospital in the nearest city, but the Peace Hospice team will ensure he doesn’t slip under the radar and will support him in whatever way they can. Finance is often one of the biggest challenges in these situations, and unfortunately Peace Hospice itself struggles with this. As a key partner, Cairdeas hopes to be able to support them through joint funded projects.
The second patient, Pal, was a lady with advanced rheumatoid arthritis. Pal couldn’t stand without support from her daughter. She had recently been walking with a stick, but the stick had broken, causing her to fall and break her hip. Godfrey promised to help the family by sourcing a stretcher or wheelchair to make it easier to move their mother around. He prescribed some medication and wrote a note to the nearby health centre asking them to provide further support for Pal. “I will not forget mama, I will not leave her” Godfrey reassured Pal’s children.
It was an eye-opening experience visiting both the Adjumani host communities and the refugee settlements. I was given an insight into how a country can successfully welcome people who have had to flee their home countries, offering refuge and dignity in their displacement. It was wonderful to see the work of Peace Hospice and the support they are offering to those in need. They were able to offer assurance that the patients would not be left to suffer, treating their symptoms and seeking further health care from the relevant organisations. Godfrey gave each patient time and space to share their worries, making them feel cared for and valued as an individual.
Please remember Peace Hospice as they face the Covid-19 crisis. Adjumani hospital where they are based has confirmed a first case of the virus and, as yet, there is no evidence of it spreading to the refugee settlements. Executive Director of Peace Hospice and key Cairdeas partner, Vicky Opia has been appointed as the lead for psychosocial care at Adjumani Hospital. Our thoughts and prayers go out to Vicky, Godfrey, and all those working to care for both host and refugee populations in Adjumani at this time.
Godfrey with our first patient, Esther
Godfrey with VHT, Madig Madig
Godfrey with VHTs and Healthcare workers in the refugee camp
Cairdeas’ main partners in Uganda are the Palliative Care Education and Research Consortium, a partnership that has been strong since its inception over 10 years ago. PcERC is a small and dedicated team based at Mulago Hospital in Kampala. As well as the main staff team, PcERC is supported by a team of dedicated volunteers. The volunteer team is coordinated by Toko Friday Santiago, a former volunteer who is now a Cairdeas Scholar studying a BSc in social work. Alongside his studies Toko acts as PcERC’s volunteer coordinator.
Two of the longest serving volunteers are Vicky and Ronald, who have both been volunteering for 6 years. Ronald and Vicky come into Mulago Hospital for two half-days per week. Their role is to identify the social and spiritual needs of the palliative care patients being seen by the PcERC team and offer support and care to address these needs. This support could be in the form of exercises for the patient to do, cleaning or bathing, taking patients to investigations and feeding back to Toko and the PcERC team any concerns they might have. As well as this practical support, the volunteers may simply sit with a patient, listening to their stories, and spending time with their families. Vicky explains how she sees her work as going beyond what people expect, whether they say thank you or not. “It’s about passion and working for God” she explains, “Caretakers might leave and a patient needs companionship… If you provide a patient emotional support, you will see a benefit in their physical health”. Caretakers are often family members of the patient who have to take care of the practical needs of the patient.
For a time PcERC had a comfort fund which allowed them to provide financial support towards medicines and investigations in situations where a patient was unable to afford them. Unfortunately, the team’s resources are too stretched to offer this support service anymore, but they are well integrated within the network of organisations in the hospital. Volunteers are able to liaise with other organisations such as Caring Hands to provide this support to patients, though this NGO is only linked with the main hospital and not the Cancer Institute where many of PcERC’s patients reside.
Each year, the team of volunteers are trained by Mike and Liz Minton who equip them with the skills needed to provide spiritual and psychological support to those living with life limiting illness. The team also receive support from a pro bono legal team who may need to help out in situations where there’s a danger of a patient losing their property.
Outside of their volunteering, Vicky owns a business and Ronald works for a children’s NGO. Ronald explains that his ambition is to study a BSc in social work. They explain that the greatest challenge of the role is how they will build up rapport and even friendship with a patient, then they may come in one day to find the patient has died or been discharged. When asked why they offer their time to care for these patients, Ronald shared, “at the end of our conversation, a patient may ask ‘will you come back tomorrow?’ and this gives me joy”. Vicky said, “I feel complete. It is the opportunity to give to others what God has given me”.
Since I met with Ronald a few months ago, he was diagnosed with cancer just a few weeks before his wedding. Thankfully, he was able to get married and recieved treatment, though this is still ongoing. Even small procedures in Uganda are expensive and, as a dedicated PcERC volunteer, Cairdeas have been supporting him through this time. If you would like to read more about Ronald's story and if you would like to offer your support, you can do so by clicking this link.
Volunteer coordinator, Toko (left), with volunteers Vicky and Roland
Towards the end of 2019, a team travelled to Gaza to deliver teaching in palliative care to first year medical students and take part in the first palliative care conference to be held in Palestine. Among this group were Cairdeas Medical Director, Mhoira Leng, and Trustee, Elizabeth Swain. In this blog, Elizabeth shares her experience teaching palliative care skills in a war-stricken country and reflects on the role of compassion and humanity in dealing with trauma.
Dr Abdel’s Mum invited us all for tea at the family home in Gaza City just near the Commonwealth Graves Commission Cemetery. “Remember, Abdel, you are human too and so treat all your patients as you would treat me”. This is what she says to him each day he leaves the house to go to the hospital. What generous hospitality and what a delightful evening we had. Dr Abdel had been “lent” to us from the University as a teaching assistant but he did so much more and kept us out of trouble. He and his Mum made sure we sampled many of the delights of Gazan cuisine.
We shared his Mum’s good advice with the 132 first year clinical students at the Islamic University of Gaza who we taught for a week in palliative care. What a delight they were – keen, enthusiastic, hardworking and “big eyed” to have a team of 6 foreigners teaching them. Maybe it was the first time they had experienced working in small groups discussing case studies of patients with life limiting conditions, seeing patients on the hospital wards and considering spiritual as well as the physical and social concerns of their patients, and they responded enthusiastically.
Perceptive, sensitive and caring youngsters – a career in medicine ahead of them in a very tense part of the world where the care of trauma patients is more in demand than in those with palliative care needs. Their feedback of the values they had seen demonstrated in Palliative Care - love, joy, humility, justice, hope, empathy, compassion, team work, humanity, respect - brought US much joy and were hugely encouraging.
Mhoira, Alice and I were privileged indeed to be invited to take part in the first ever Palliative Care conference held in Palestine at which we all presented papers. We were part of a small cohort of overseas speakers and as such had very much front row seats in the conference hall which made us vulnerable to the many photographers in attendance!
Gaza’s population is made up of 70% refugees from the war of 1948 and their educational and health needs are the responsibility of the United Nations. I was delighted to go with a very senior nurse to visit a couple of the primary care centres. There is a keenness to explore the possibilities of Palliative care but a funding crisis in 2018 prevented progress in this. Janet – one of the team spent a happy and productive time talking with a group of nurses keen to know much more.
It is a troubled part of the world and care of trauma casualties takes a lot of resources, but in terms of pain management and compassion there are transferrable skills and attitudes.
Mhoira and her co-authors Rachel Coghlan Omar Shamieh, Khamis Elessi, and Liz Grant bring this out in a letter recently published in the Lancet and suggest, too, a role in conflict management. (Read the full letter here)
“To claim that palliative care alone could be the solution to the conflict in the Gaza Strip and other conflicts like it, which often seem like intractable political calamities, would be naïve and careless. Yet we do believe that the compassion and humanity intrinsic to palliative care affords it a powerful role in working towards conflict resolution.”
Abdel and his Mother
The team from the UK: Mhoira Leng, Janet Gillett, Elizabeth Swain, Alice Gray and Tony Jefferis
Dr Jack Turyahikayo completed a master's degree in palliative care supported by a scholarship from Cairdeas. In this blog, Jack shares how the training impacted his role as a doctor and continues to impact the lives of others through his work. If you would like to donate to support further training scholarships like Jack's, follow this link.
Training as an internal medicine physician, I had high expectations of pursuing palliative care medicine as my career path. This vision still hangs in the balance due to the absence of palliative care positions among public institutions in Uganda. This situation is soon changing, following a commitment by the Ministry of Health to avail consultant positions in teaching public hospitals.
My master’s training in Makerere University, College of Health Sciences was quite eventful and academically intense but equipped me with the necessary knowledge, skill and attitude to provide impactful services. I reflect on this experience with gratitude and gladly appreciate Cairdeas for the scholarship provided for the master’s program.
My journey post-master’s training has been a humbling experience as I continue to improve care for patients with great palliative care need in Uganda and Africa.
I currently work as a part time physician providing palliative care services in the Mulago National Referral hospital and Kiruddu Hospital, an axillary facility currently mandated as a training hospital for both under- and post-graduate students of the College of Health Sciences, Makerere University. I participate in teaching and supervising students rotating in the palliative care service and mentoring future leaders in palliative care pursuing various levels of qualifications at the Institute of Hospice and Palliative Care in Africa (IHPCA). My hope is to improve capacity and build a critical mass of great leaders to place palliative care at higher levels in Africa.
Last year, I conducted a study in collaboration with a resident student from Stanford University. We looked at diagnostic and prognostic awareness among patients with advanced breast cancer and their family members. This study yielded key findings about this important subject which were presented at the APCA conference last month. Thoughtful insights were shared with interested partners and stake holder for future implementation. The APCA conference also provided the opportunity to engage, interact and network with distinguished researchers about future collaborations and partnerships with our palliative care service in Mulago.
As a palliative care service, sustainability has been a big challenge in the last few months. Many services have scaled down or completely halted their services. For sustainability, we expanded our services to include 2 private facilities (Nakasero hospital and Aghakan clinic). I run a weekly outpatient clinic at Nakasero hospital but also attend to admitted patients that have palliative care needs referred to the clinic. My colleague, Dr Namukwaya Elizabeth provides similar services at Aghakan clinic. Our expectation is that we can generate some resources that can help sustain the service for the many who cannot afford.
Huge challenges of sustainability still exist for several palliative care services in Uganda and Mulago/Makerere Palliative Care Unit is not exempt. We work very hard to provide palliative care to those in need and sincerely hope for potential collaborators, partners and donors to support this much needed care to several patients not only in Uganda but also Africa at large.
If you would like to support more scholarships like Jack's, donate to our 2019 Christmas Appeal by visiting www.cairdeas.org.uk/get-involved/donate and selecting 'training scholarships' from the dropdown list.
Dr Jack presenting research at the Mulago and Makerere Palliative Care Unit 10th anniversary
Jack with colleagues and friends celebrating their graduation
Esther Nantongo Muyinga, is a Registered Nurse who was sponsored by Cairdeas to pursue a degree in palliative care at Makere University in Uganda. Esther had worked for many years on the wards but had never considered the need for patients to be cared for in a holistic way. In this blog, Esther shares what she learned from the course and how important palliative care is to the patients she cares for.
I am so grateful to Cairdeas Trustees and Supporters for the scholarship which was gifted to me in my first year pursuing a Bachelor of Science in Palliative Care at the Institute of Hospice and Palliative Care in Africa. The course has helped me to understand the role of palliative care in improving the quality of life of patients with life threatening illness and their families.
Through the course I gained knowledge and skills which enabled me to assess and assess, diagnose and manage the pain and symptoms of patients. I learned to communicate effectively when sharing information with patients and their families, gained an understanding of the different medications that can be used to address symptoms, and also shared with my workmates the assessment and management of these patients so as to improve their quality of life.
There is a difference between palliative care and curative care. Although both involve caring for a patient, palliative care takes a much more holistic view of this care. It involves the family and support networks of patients and requires communication skills to share information with patients and their families whether that is good or bad situation. It also involves assessing the pain of a patient. Following the course, I am now able to take a comprehensive pain history and record the details in the patient’s pain assessment chart.
As a result of this course, I have seen reduced stay of patients on the hospital wards after thorough assessment, as those who can benefit from the Home Based Care (HBC) are discharged and linked to HBC providers. The number of admissions has been reduced, because the patients have understood their diagnosis and management, and they understand when to come to the hospital and when to go to palliative care centers (Hospice).
Palliative care practice reduces the workload in the hospitals, saving money, time and resources.
A story of a patient that Esther has cared for...
Patient X was a 32-year-old female, married with two children. She had been unwell for 8 months with a complaint of right abdomen pain, which was treated as peptic ulcer disease (PUD) but with no relief. This later developed progressive abdominal distension associated with reduced appetite, weight loss and dyspepsia proceeding abdominal pain.
In October 2018, Laparotomy and Oophorectomy was done and a biopsy taken off. Histology results showed Krukenburg tumor. Following the results, she was initiated on chemotherapy in November 2018 and received seven (7) cycles with poor response. The tumors continued growing bigger and she became weaker and developed ascites. Because of poor response, chemotherapy was deferred. Frequent paracentesis was done and also pleurocentesis done once. At first the primary care team thought that the primary was the ovary, but then later it was discovered that the primary was the pancreas.
Patient X is employed by a law firm as an office messenger but she has not been working for 6 months now, and is worried of losing her job. She is cared for by her mother who is a tailor by profession, though because of the added responsibility is also no longer working. Her husband is a self-employed IT worker. X complains that when her husband visits her in the hospital he spends most of his time on the computer rather than talking and caring for her.
When I visited patient X she looked a young lady, very sick with mouth sores and a distended abdomen. I was able to offer various medication to help treat her symptoms, including oral gel to relieve the mouth sores. I advised her carer to give patient X the type of food she would like but in small quantities and to avoid fried foods and sweetened and citrus based drinks. The patient, the mother and the husband were given clear explanations about the diagnosis and management, and the husband was told of the importance of his availability and care to the patient.
We were able to discuss the financial burden with the patient and her family and linked them to the social worker for further support. She received continuous support through counselling. I was also able to pray with the patient and linked her with a spiritual leader for further spiritual support.
Patients with life limiting illness have to face difficulties that go beyond the physical symptoms of their illness. Through my course I now understand how, as a nurse, I can help to relieve these stressors and manage the pain and symptoms of a patients - physical, psychosocial and spiritual.
If you would like to support more scholarships like Ivan's, donate to our 2019 Christmas Appeal by visiting www.cairdeas.org.uk/get-involved/donate and selecting 'training scholarships' from the dropdown list.
Esther Nantongo Muyinga recently completed a degree in palliative care with the support of Cairdeas.
I am Toko Friday Santiago, the Volunteer Coordinator for the Palliative care Education and Research Consortium (PcERC) at Mulago Hospital, Uganda.
I would like to thank Cairdeas Palliative Care Trust for giving me the opportunity to pursue a Bachelor’s Degree in Social work and Social Administration. Being able to excel with good grades without needing to do any retakes has been one of my greatest highlights and achievements since I began my studies. The course has been very interesting and encouraging to me in many ways. I have been able gain experience, improve my social work skills, and broaden my understanding and knowledge.
The course has also contributed to my development as a person through gaining analytical and practical skills and knowledge. This has helped me to make a difference in the lives of patients and their families at Mulago Hospital, especially those with life limiting illness.
Some of the challenges I have encountered include the expense of photocopying notes of all the lectures, and that transport keeps fluctuating during certain days especially during the rainy seasons.
However, since beginning my course I have built my confidence and assertiveness as a student leader in charge of the social work faculty. I also act as the Minister of Health within the Makere University Student Guild where I represent the students’ views and challenges and provide support during the class assessment presentations.
If you would like to support more scholarships like Ivan's, donate to our 2019 Christmas Appeal by visiting www.cairdeas.org.uk/get-involved/donate and selecting 'training scholarships' from the dropdown list.
Toko showing off his Cairdeas-Sanyu T shirt
Toko and his colleague making visits as the Sanyu team
Ivan Onapito received a Cairdeas Scholarship to study a 2-year Masters in Practical Theology at Africa International University. In this blog, Ivan shares the story of how his scholarship came about and how his studies benefitted the work he was carrying out at the Makere Palliative Care Unit. If you would like to donate to support our training scholarships Christmas appeal, follow this link.
At the beginning of 2011, I joined Makerere Palliative Care Unit as Volunteer Coordinator. This was a new role and I was tasked with setting up a team of volunteers to help in providing psychosocial and practical support to patients with life limiting illnesses, together with their families within Mulago Hospital and the Uganda Cancer Institute. This was after a needs assessment had been carried out showing a sizeable percentage of patients didn’t have these needs met. It was a daunting task, but due to the support of both internal and external mentors, we were able to get the programme up and running. My role later expanded to providing pastoral care to our patients.
The following year, we began having conversations about increasing my capacity through further studies. This would help in providing better care to our patients, create opportunities for research and also provide credibility for my role and our unit as a multi-disciplinary team.
Cairdeas graciously provided a scholarship for me to go and study a Masters in Practical Theology at Africa International University between 2013-2015. I was able to do a research on exploring the use of narratives as a tool in spiritual care for patients with life limiting illnesses. This research was presented at the Africa Palliative Conference in 2016 and the Global Seminar in Salzburg, Austria in 2016.
One of the benefits of this program was to make me even more aware of the need for capacity building among faith based leaders in areas of palliative care. I was involved in setting up a hospital ministry for my local church which we named ‘Sanyu’, meaning joy. We have established a good partnership with the community hospital and the volunteer team has grown to meet the spiritual and psychosocial needs of patients within the hospital.
For the past three years I have also been lecturing at Africa Renewal University, a Christian university training leaders and pastors to transform their communities. I teach practical theology courses, one of which is spiritual care for the sick. There is a great need to incorporate palliative care into theology programs so that even the furthest in the communities can have access to this care, have their holistic needs met and live with dignity even if they are dying. Cairdeas built my capacity through this scholarship. It was through this scholarship that I was able to get a teaching position at Africa Renewal University, and use the knowledge and skills acquired to train church leaders how they can be holistic in their care for the sick and vulnerable.
I hope to enroll for a PhD in Practical theology someday.
If you would like to support more scholarships like Ivan's, donate to our 2019 Christmas Appeal by visiting www.cairdeas.org.uk/get-involved/donate and selecting 'training scholarships' from the dropdown list.
Ivan Onapito graduating from his MA in Practical Theology
Ivan (middle) with current Cairdeas scholar, Toko (left) and Cairdeas Operations Director, Sarah
21 years after the first time I stepped into Kerala, India to attend the Indian Association Palliative Care conference I am back in beautiful Kerala. Little did I realise that this meeting with the team in Calicut with Drs Rajagopal, Suresh Kumar, Gayatri and Chitra would be the start of an incredible adventure personally and professionally. In these intervening years I have had the amazing privilege of working with colleagues who are now friends, and students who are now leaders. I have travelled to 17 states, eaten amazing food, negotiated trains, planes and autos and revelled in the wonderful fabrics, spices and colour. I have seen palliative care seeded and grown, met and worked with inspiring pioneers, dedicated volunteers and community members, inspiring young researchers and academics and more than a few elephants and rhinos!! I have watched the monsoon enfold and see the devastation of floods, I have floated on backwaters, swum in crashing waves, visited places of incredible history and culture and climbed majestic mountains. I have seen people suffering unimaginable poverty and pain and those who fight with compassion and determination to make a difference and not leave any person abandoned. I have seen the small daily miracles of costly love. I have visited, lived, loved, and felt part of this amazing country, subcontinent and people. Thank you, India, and to the many people I have had the joy of learning from and working alongside.
The IAPC conference has grown and developed having a different character each year as it moves from state to state, from north to south, east to west. Those of us attending over the years tend to date our experiences by saying ‘was that the year of Guwahati or Delhi…no it was Pune or Hyderabad’. This year, 10 years after I was in the Scientific Committee of the first Kochi conference, I was honoured to be back on the team, this time led by dear friend Prof Chitra Venteteswaran. The venue in the beautiful Aeli Hills, Aluva had strived hard to recover after the devastating floods of 2018 and the organising committee worked hard. The theme of the conference in Feb 2019 was ‘Voices in palliative care; ensuring quality, creating solutions’ and you can find the executive summary and abstracts including our presentations in the IJPC Special Supplement April-June 2019 Volume 25 | Issue 2 (Page Nos. 169-357). So many innovations from augmenting the voices of those with different abilities, LGBTQ, tribal settings, children, elderly, humanitarian settings and mental health. There were opportunities to discuss innovative multidisciplinary working, meet experts and discuss developments such as legal changes for end of life care, new definitions for palliative care and engage the media.
It was a joy to have Cairdeas scholars Dr Peace Bagasha presenting her work on end stage renal disease and Ms Vicky from Adjumani and Peace Hospice sharing in a wonderful session on humanitarian settings… and we won 3 prizes along with Prof Julia Downing from PcERC/ICPCN!!! I shared work from Gaza and others the incredible impact the palliative care community in Kerala had in supporting those affected by the 2018 floods. IAPC central council have agreed to take this forward as a working group for India.
These south-south interactions give rich opportunities for mutual learning, exposure to an international forum and a chance for cultural exchange. Vicky has shared more in another post including our post-conference chill time by the Arabian sea. I will also share more about visits to Mizoram and updates from BCMCH.
Looking forward already to Feb 2020 when we reconvened back in Guwahati, Assam.
Vicky Opia is a senior palliative nurse specialist working at Peace Hospice in Adjumani, Uganda. Vicky champions palliative care in the communities and refugee settlements of Adjumani District and was in the first cohort of Ugandan nurses to receive palliative care leadership training as part of a joint project from Cairdeas and the University of Edinburgh. Cairdeas recently sponsored Vicky to attend this year's Indian Association of Palliative Care's International Conference (IAPCON2019). Vicky writes about her experience of the conference in the Aeli Hills in Kerala.
Kerala, my dream land; Yes, finally my dream has come true. Kerala, God’s own country, has been a home I had always longed to be in my life. Its rich natural resource, the Arabian sea, the thick forest and diverse cultural backgrounds which the local community benefit from to sustain their lives was admirable, like the hydrological or eco water conservation; simple and affordable utilization of fish pond water in the majority of homes that we visited.
Dear colleagues, I have been challenged, back home we have natural water body (the River Nile) which is traditionally used for fishing and transportation, but it’s not being used to generate income for its people, this because of inadequate knowledge. Friends? I believe if our people were empowered to utilize the natural resource for fishing and horticultural practice, then quality of life for patients and family would have improved, because vegetables contain all the minerals and vitamins that the body needs, and fish could be sold to purchase other items that patients and family need for improved quality of life.
I love the beautiful natural scenery of the coconut plant from which oil is extracted for nourishment, also the natural fresh coconut fruit juice from which families earn their living. Horticulture (growing of green vegetables) is being practiced by drawing sea water in at almost all home sites. To me it’s not labour exhausting, meaning one or two persons can contribute towards economic support of the family, and it’s quick and time saving.
What triggers my mind is how the natural resources would contribute towards food and nutrition, healthier lifestyle dynamics, the eco spirituality and medicinal component, ‘my travel shall change the perspective of our community’.
The Conference; To many people conference means a platform where there is a diverse and coordinated effort for positive action. To me, it’s a combination of education, relaxation and a time for renewing friendship, and perhaps management of burn out.
The 26th Edition of the Indian Association of Palliative Care's international conference had the theme 'Voices in Palliative Care: Ensuring Quality; Creating Solutions'. This was rightfully chosen because many times patients and families with palliative care needs are not offered the opportunity to share experiences, yet this could provide for policy reforms and reviews in palliative care.
For example, the Narcotic drug and Psychotropic substance Amendment (NDPS) Act of 2014 throughout India ensured the availability of essential Narcotic drugs (ENDs) at an affordable cost. This means there shall be an improvement from the less than 2% access to pain and palliative care in the country.
Meanwhile in Uganda, to improve access to opioids, the National Drug Authority of Uganda officially registered the use of oral morphine as a palliative treatment (1993) and this treatment has been prepared at HAU ever since. The Ugandan Government has also subsidized Joint Medical Stores (an NGO pharmaceutical organization that supports both public and private health facilities) to reconstitute powdered morphine. A statute to expand the range of providers who can prescribe narcotic analgesics was an important milestone in overcoming problems caused by the shortage of physicians in Uganda. According to this statute, nurses and clinical officers who are ‘certificate in specialist palliative care’ are authorized to prescribe and supply morphine for pain and palliative care only.
I have learnt that the patients’ voice is central for educating all stakeholders, including patients and caregivers, further guiding them through important life choices and quality of life concerns.
Friendship and networking; The saying, ‘a friend in need is a friend indeed’ did not only apply to others but I too, as Dr Mhoira has been my lecturer, mentor and a friend indeed. She taught me in class while in Uganda, together we have worked and expanded palliative care to other parts of the world. While in Kerala I have met dozens of friends, the likes of Dr Chitra who patiently waited for my arrival at the immigration office, Dr Shoba Nair with whom I had the first spiced meal while in Kerala, and who gave me the first welcome in her house with food full of spices, Dr Lukas with whom we relaxed at the Arabian sea and all those who admired black as beauty as demonstrated by the request of photo taking. I was a celebrity because of my natural black colour, ‘friends do not bleach yourself’ because somebody wished she/he had that colour.
The conference provided me with a great opportunity to network. Palliative care specialists from other parts of the world have become a valuable resource for referrals and best practices. I used to avoid experts in palliative care for that they could discover my competitive advantage actually limited my own success, but I have realized that collaboration is the only way to approach networking. Most people have been helped through conference to uncover ideas and spark inspiration when they get to know each other on personal level.
Educational aspect; No matter how experienced you have been in palliative care, you have new things to learn. Working in a district hospital and a small hospice can many times be isolating and without exposure to a variety of views, I feel we may be missing current knowledge and skills that can impact future results. The educational aspect of this exposure made me include other groups of the vulnerable community (mental health) in palliative care in both Peace Hospice and the hospital palliative care unit in Uganda, for example we had a radio talk show on local FM station on palliative care for mentally ill patients.
At a conference, you get to know about the latest findings in the field of palliative care even before it is published in journals. Although you should not take every piece of information you hear from a conference as gospel truth until you are able to look through the methodology and findings for yourself. But in a conference you get to have a peek at what others are saying and working on. This was a great inspiration for me to undertake for my own research while back home.
Relaxation?; I count part of my trip to Kerala as stress management. Because of the many encounters and agony of pain from patients, at times we need to switch off our minds from these miseries to creating our own happiness. The Arabian sea I read about in books became home for 36 hours as we were in Cherai beach. Many times I was faced with numerous responsibilities and tasks, or the demands of an illness, but ‘relaxation has today reduced my anger and frustration’. The waves of the sea swept off all my stress, renewed my mind, and made me younger for the next world to come.
Political will and commitment; In Kerala, the state designates a space for integrated community outreach. Once a week a team of health professionals from all disciplines take their services closer to the people. This creates an opportunity for patients to access comprehensive health services. Patients feel valued, reducing stigma, and it’s also a forum for good networking with friends. Because of this, patients can receive longer care. We had a patient who had 21 cycles of chemotherapy, and another with spine injuries who had been on life support for more than seven years with all the sophisticated gadgets at home with the parents happily managing her.
I have learnt that to deliver a successful palliative care service we need a joint effort because everyone has a unique role to play for the patient’s quality of life. The health worker does the technical work while the politicians come to formulate policies.
The cultural practices; Culture is still deep rooted in Kerala, while in the political centre (place for patient’s management and care) well-dressed couples come bare footed because they want an attachment with Mother Earth and caring for the chronically ill is everybody’s responsibility. As much as culture impacted well in management of palliative care patients, I recall one outreach we made in Shanthi Bhavan Missionary Base home-care centre for mentally ill patients. Out of the 7 patients seen, 5 were female who had issues with their mother in-laws. While having a discussion one of the patients broke down in tears and said she would not go back home because her mother in-law did not understand her situation. This is where the politicians and policy makers should come and gradually change these practices to improve the quality of life for mentally ill patients.
The 26th International Conference of Indian Association of Palliative Care, or more commonly known as the IAPCON 2019, was held on 8th to 10th February this year in Kerala. The conference was a huge effort but also a major success, with over 1,000 people attending from 16 countries from around the world. The theme was ‘Voices, Ensuring Quality, Creating Solutions’. This allowed for a wide variety of speakers both national and international, from different disciplines within the palliative care family. This included perspectives from the ‘voiceless’, with excellent contributions from palliative psychiatry. Cairdeas India faculty lead, Chitra Venkateswaran specialises in palliative care and mental health and is now working for the Believers Church Medical Hospital as Head of Department for Psychiatry with a joint round in palliative care. You can read Chitra’s conference editorial at the Indian Journal of Palliative Care.
Cairdeas was represented at IAPCON2019 in several ways. Mhoira sat on the scientific committee, which worked hard to ensure a range of topics to cater for the multidisciplinary nature of palliative care. We presented in the main session, and abstracts were all well received. At the IAPC central council Mhoira submitted a proposal to begin a working group looking into palliative care in humanitarian settings in India. This seemed particularly significant due to the location of the conference in Kochi, where they recently suffered a devastating natural disaster in the form of floods. The proposal was approved by the committee, so we look forward to seeing how this working group progresses.
Cairdeas scholars Vicky Opia and Peace Bagasha performed incredibly well at the conference. They contributed to 3 parallel sessions, 3 posters and 3 oral presentations along with Julia Downing from the Uganda team. We were delighted to win 3 prizes for oral presentations. Peace also travelled to Hyderabad to review renal transplantation as part of her other roles. Vicky spent some time visiting Mehac and Kochi Government Hospital community programmes.
With over 1,000 people present at the conference, representatives from around the world and across the palliative care sector, and a wonderful display of Kerala culture, the future looks bright for palliative care in India.
Dr Dave Fearon leads the Cairdeas Sahara project which was established in 2014. The project is one of the first palliative care services in West Africa, where health workers are unfamiliar with even the basic principles of holistic palliative care. Often, pain and other burdensome symptoms are left ignored or even denied by health workers. Fortunately in recent years there have been huge strides in progress, particularly in pain management. Dave reports on the most recent step forward: access to morphine tablets.
As many of you will know, severe pain is a common problem for people with life-limiting conditions anywhere in the world. It is no different here in the Sahara. The majority of our patients at Cairdeas Sahara in Mauritania have advanced cancer and pain. Thankfully we have a good working relationship with the national cancer centre where morphine is available. Up until recently it was only available in injection form or long-acting tablets, which was not ideal. There was no liquid or tablets which worked quickly, which are very useful when starting morphine and for ‘break through’ pain relief to use any time of day or night. We have been asking for this for several years, but it was not until a new director, oncologist and paediatrician Dr Benina, was appointed at the end of 2018 that we have seen change. We now have a short acting morphine tablet. She is not yet satisfied and is still pushing for an oral suspension or liquid form, especially for her young cancer patients.
We have recently been invited by the cancer centre to train the doctors on how to use these new tablets. In contrast to many countries where doctors are reluctant to prescribe morphine, here we have a different problem, the overuse of morphine injections. Several of our patients have been treated very liberally with morphine injections whenever they have attended the cancer centre. The doctor gives them a morphine injection for their pain. They really like these injections because they work very quickly (although the effects wear off quickly as well), and like many Mauritanians they think injections are more powerful than little tablets.
The Cairdeas Sahara team are now working with five or six patients who are in this situation, of switching from the injections to the tablet format. NDiaye, the lead nurse is doing a great job and is being stretched in his communication skills. Importantly, the cancer doctors are fully supportive of our work and are now aware of how to start oral morphine. We can already seen the benefits for our patients.
You can find out more about the Cairdeas Sahara project here.
Morphine training with doctors at the cancer centre
Dr Peace Bagasha is the first renal physician and palliative care physician in Uganda. Peace writes below about a story of how she was able to bring hope to a young man with kidney disease in Uganda.
I stood by his bedside in Kiruddu Refferal Hospital watching him struggle to breathe in and breathe out. I had seen him multiple times on many hospital admissions over the past 12months. He was barely 35, almost the same age as me, but this time was different. We would not be having the same conversation about life and options as we had had before. We would not even be having a verbal discussion this time round. I had said “hello” earlier and the most he could manage was a smile when he turned and recognized my face. He had no energy to reply beyond the smile, he was saving every breath to just breathe in and breathe out.
In a way John was the exceptional one out of many of my end stage kidney disease patients. Fully aware of his personal financial situation, and having experienced the struggles of his older brother who was on dialysis, he had adamantly chosen not to even think about hemodialysis as an option. He chose from the very beginning maximum conservative management adamantly stating that “I cannot afford dialysis”.
His family was seated around him fully aware that he had not many days or even hours left. He was not in pain. He was comfortable thanks to the care and support provided by the palliative care team.
With no national health insurance coverage supporting renal care, in Uganda patients have to pay out of pocket for renal replacement treatment including hemodialysis and kidney transplant. Costs range from 500,000Ugshs per week for dialysis to 100millionUgshs for a kidney transplant abroad. This makes hemodialysis inaccessible for majority of Ugandans. Some try to sell property and assets but funds soon run out and poverty levels worsen. Conservative care is the forced option for most.
With access to palliative care services provided by the palliative care team in Kiruddu, John and his family had the rare opportunity in Uganda to experience dignity and get holistic support at the end of life. Without financial support from people like you, many other Johns will not have an opportunity as special as this.
The end-of-life can be a scary and difficult time for patients, their loved ones and health care professionals. Although it is an inevitable event, we can be overwhelmed by fear of the unknown and problematic symptoms.
Being a newly qualified healthcare professional, I found end-of-life care very difficult to manage and had limited specialist experience in that field. As medical professionals we are taught how to 'fix' people, and so facing mortality of our patients can be distressing or feel like we have failed them. However having worked alongside the experienced team at PcERC, I have learnt that it is in fact possible to bring hope and comfort to patients and their families at this difficult time.
A story which sits at the forefront of my mind is that of LM, a patient with Cholangio carcinoma. PcERC supported her for several weeks during her inpatient stay whilst she was receiving chemotherapy. Initially the team were asked to consult to help manage her distressing symptoms, particularly pain.
After discussing her concerns, we were able to understand that her pain was poorly controlled in part because she was concerned about the effects of medication and so had not been using them correctly. After fully exploring her concerns we were able to arrange a pain control regime that suited her and managed her symptoms. Consequently she was brighter, able to and able to enjoy time with her loved ones rather than suffering in pain.
However what LM and her carer reported they appreciated the most from our team was our time. They expressed that our input meant they felt listened to, had better understanding of her condition and felt more confident in caring for LM. I realised that hope can come in many forms, although her outcome and prognosis were not changed, we were able to improve her quality of life with symptom control and knowledge.
It has been a real privilege to work with PcERC and see the fantastic work they do to help make death as dignified and peaceful process as possible.
Toko Friday Santiago, a volunteer for PcERC in Uganda shares a story of how he brought hope to a refugee with terminal cancer...
Rita (not her real name) was a 49 year old refugee from Congo who was diagnosed with breast cancer which had spread to her lungs. She was married with two children, 24 and 15 years old. Rita's husband was her main caretaker. After spending several weeks on the surgical ward in Mulago hospital she was referred to the palliative care team by the surgical doctors for pain and symptom control. Being a member of the multidisciplinary team (MDT) as volunteers, we visited her and her husband. Though we had challenges with communicating with them because of a language barrier, we managed to establish a good rapport with both the patient and caregiver through an interpreter. We became very good friends and she was able to open up and share a lot of information regarding her fears and concerns about her illness. She was concerned whether she would be able to get treatment and a cure for the disease and feared she may end up dying and never to see her children again. 'I don’t have money, I can’t even afford investigations', she lamented.
“I want a cure; I want to go back to Congo and see my house and children”
Her main distress was overwhelming pain, an inability to walk and difficulty with breathing. She was bed bound and could not even turn in bed. The team prescribed her oral morphine, which the volunteers helped to get from the pharmacy and also educated her husband on how to give morphine, explaining that this will reduce her pain and improve her breathlessness. She was also encouraged to adapt to a sitting up position and other breathing techniques which would make her as comfortable as possible. Practically the volunteers were able to pick her drugs from the pharmacy and also help translating English language to the patient and family since they could only communicate in French and Swahili. We were able to liaise with Inter Aid, an organization that supports Refugees, who helped with providing food and upkeep to enable her to stay on the ward. After a few weeks her symptoms were managed, a biopsy was done and referred to the cancer institute. Unfortunately, she was asked to do more investigations – pre-cancer treatment – but she was unable to do this due the financial constraints. As volunteers we continued visiting her on the ward, spending time with her and at times praying with them. They were very grateful to us and the palliative care team saying… 'you are angels from God... We are refugees but God has sent you to visit us and comfort us please come always!'. We continued to liaise with the social work team but it became difficult to raise funds for her investigations. This was quite distressing for the patient, caregiver and us as volunteers. She was then discharged back to the Refugee camp and as she was leaving she said she was very grateful to us for the love, care and support given to them as strangers and wished God’s blessings. 'At least let me go and see my children before I die!' Said Rita as she left the ward. Inter aid organized her transport back to the refugee camp. Her husband called to inform us of her death 2 weeks later. May her soul rest in peace.
Mercy (not her real name) is an elderly lady who was referred to our palliative care unit because she had severe uncontrolled pain. She was diagnosed with breast cancer 1 year prior to the time we had seen her and only managed to come to hospital for treatment 3 out of the 6 times that had been planned for her because she could not meet the transport expenses to hospital. She lived far from the hospital, did not have a job, and although she had children she was estranged from them. She had not seen them for two years and she lived alone. Our team was asked to be part of Mercy's care to control her pain which was very severe and would make her scream out loud on the ward. She could not sleep all night, was fatigued and could not walk as the pain became worse on any slight movement. She was a devout born again Christian and when we first saw her she was crying out to Jesus to help her and also kept on referring to her being attacked by satan causing this pain. Our team assessed her and managed her pain and our team of volunteers offered her practical support that included getting her to different areas where she needed to have her tests, xrays and scans done on a wheel chair. With our patient comfort fund (donations to our team to help patients who cannot meet basic needs) the team bought her food and other essential utilities. The volunteers also recognised that she needed a spiritual community, they supported her spiritual needs by regularly visiting her, talking and listening to her and praying with her. Her pain was almost completely controlled in a week’s time, she became independent and was able to do activities of daily living without support. She said to our team ‘Jesus has answered my prayers by bringing you to me. Even if my children do not support me or visit me I have got you as my children now. I have always dreamt of the day I would be able to walk again without pain hindering me and now I have got what I prayed for, I can sleep now and I can even laugh’ She was later started on chemotherapy and discharged. She has come back twice now for chemotherapy walking without any support. She always contacts us when she comes to hospital and she feels she is also obliged to bring hope to other patients when she comes to the ward. She told us that we brought hope to her when she became free of suffering and now she devotes her time to give hope to other patients on the ward by supporting them and giving them psychological and spiritual support.
Liz Namukwaya (left) with her friends and colleagues, Grace and Elizabeth
Palliative care is about quality of life at any point during the trajectory of an incurable illness. It is more about life than about death. When the hope for a cure is gone we need to redirect the patient and family's hope for something more realistic and achievable.
Palliative care clinicians struggle with maintaining hope in the face of life-threatening illnesses with poor prognoses. However, can we foster true hope and not false hope or hopelessness in our communications with patients and families? Inspiring hope in ourselves as clinicians also has a healing effect on us and can help prevent burnout and increase resilience to the stressors inherent in challenging work situations. Within the context of communication on prognosis and end-of-life issues, however, we perceive patients’ hope as difficult and sometimes experience an ethical dilemma between maintaining patients’ hope and truth telling, which may diminish hope.
FN was a 28-year-old female,a single mother of a 12-year-old daughter, lying on a mattress on the floor of the cancer ward. Weak and emaciated she was clearly in her last days of life. She had cervical cancer and HIV/AIDS, but despite her illness she smiled as she held my hand. I found it hard to hold back the tears. We chatted for several minutes and she told me that at one time she had a good life but then she was diagnosed with HIV/AIDS and later cervical cancer. Most of her family abandoned her including the father of her 12-year-old daughter. She was suffering not only from physical, but also spiritual pain. She had spent many sleepless nights and kept asking, ‘why me?’; wondering if God cares. Oral morphine was prescribed for her physical pain and was effective in making her comfortable. FN was counseled about her disease prognosis and potential treatment outcomes and we made mutual goals of care. From then she kept saying God loves her and our team were angels from God. For FN, the biggest concern was getting her daughter educated after she died. Thank God we managed to get in touch with the father of her daughter. We met him and he promised he would take full responsibility of their daughter! This was a big relief and assurance for FN. She died peacefully on the ward after knowing that her daughter would get an education, even when she is long gone. Since then Ihave met many other FNs, desperately poor people with terminal illness who are crying out for help and support. Patients may have more goals and priorities besides living longer. Together we can do more.
NS was a 17 year old female with advanced abdominal tumour who had just completed high school. She suffered severe abdominal pain, distension and vomiting as a result of malignant bowl obstruction. She was the first borne out of 4 and her main carer was her mother, a single parent who converted from being a Moslem to a born again Christian in anticipation for a miracle for her daughter. The mother had spent everything to ensure that the daughter survived and she had now become financially constrained with very little support from the close family. Meanwhile NS’s condition continued to deteriorate. It was at this point that the palliative care team was consulted to see the NS for symptom management and end of life care. Children with cancer commonly suffer physical and emotional symptoms affecting their quality of life and the parents to these children with cancer feel lost and experience emotional conflict because of an inability to accept the suffering and reality of losing their children. Palliative care can improve the quality of life for children and their families. Although in reality, even with palliative care there can be despair and prolonged grief for parents involved and loss of hope. I was able to do an assessment of NS’s physical symptoms and these were very distressing both to the patient and mother. Though very challenging we eventually managed to control these symptoms. This symptom control gave a lot of relief to the mother and gave some hope as she waited on a miracle cure for her daughter from God. We are therefore vital in the continuous assessment and addressing of parents' spiritual needs, with the involvement of family and religious leaders.
Hope for cure has traditionally been the patient’s best friend and the clinician’s strongest ally. Clinicians may avoid discussing their patients’ poor prognoses with them for fear that this might destroy their hopes. However, patients with serious illness usually want to hear the truth from their clinicians and benefit from knowing the facts. By still hoping for a miracle and surrendering to God, the parents show that they cannot be separated from their relationship with God. Amidst a seemingly hopeless situation, I noted that NS's mother became more at peace, with ongoing counseling and support. NS died on the ward but her mother called to thank me for the support saying she was hopeful that her daughter gone heaven.
Elizabeth speaking at a palliative care conference
My name is Grace Kivumbi and I am the Unit Manager with the Palliative Care Education & Research Consortium (PcERC) & MPCU based in Kampala, Uganda. So where do I start in telling you about my role? There is so much, and every day is different! What I am about to recount is not exactly a typical day, as this would be too much to pack into one day, so let me describe what might be a typical week or a month for me…..
I suppose the most important thing is for me is to keep the daily operations of the office up and running; I am supported by an administration assistant to do this. Finance is a big part of the role as I keep on top of budgets for both PcERC and the Makerere & Mulago Palliative Care Unit (MMPC). There are lots of requisitions to complete as I ensure we stay accountable for all of the activities and projects we run, and there are so many statutory requirements that I have to make sure are met.
I am a ‘people person’ so whilst I do lots of behind-the-scenes work in supporting staff recruitment, contracts and appraisals, I love it when I get to work alongside people - I enjoy the camaraderie and support. For example, I have a colleague based in the UK (the Cairdeas Operations Director) and I enjoy it when we have Skype calls to work out issues regarding reports or finances. I like to collaborate, so this suits me, and although email is great it is even better to see someone’s face and connect that way!
You could say I keep other people moving! I mean this in so far as I provide logistical support for international placements in the unit, including flights, travel and accommodation. For example, when we have young doctors coming from the UK to do work placements here in Uganda, they are coming for anything from between two months to one year and, understandably, they have lots of questions about the culture, customs and practices, as well as the practicalities. I try to be available to answer all of their questions! Support ranges from helping with preparation for visas, arranging for them to travel from the airport to where they are staying, obtaining work licences and settling down to work with the team. It is lovely when they arrive and I am finally able to meet them.
Lots of my work is alongside the Cairdeas Medical Director, Dr. Mhoira Leng. Dr. Mhoira is very dynamic and energetic and she travels extensively throughout the world and I help with her travel plans and bookings. I sometimes wonder where she gets her energy from! I provide financial support to Dr. Mhoira including predicting monthly costs for international travel, advance requisitions and accountability.
There is a group called ‘The Cairdeas Faculty’. This is a group of professional volunteers who are linked to Cairdeas to create a pool of expertise, and who are available to support the work of Cairdeas and other partners through mentoring, training, curriculum development, capacity building and clinical work to facilitate the growth of palliative care. Whenever faculty members travel to Uganda I am often called upon to helpsort out the logistics including organising their airport transfers, accommodation and local travels.
We are lucky enough to manage some grant funding from National and International donors and grant makers for various projects, fieldwork and research. My work is kept interesting as I participate in both the grant writing and in the narrative reports that we send back to them to update them on progress and its so rewarding when our work and efforts in improving the quality of life of patients are families under our care is appreciated by those that support us.
One of the roles I am quite proud of is that I am currently champion for the American Cancer Society SOURCE - Strengthening Organisations for a United Response against the Cancer Epidemic. This is a program aimed at strengthening organisations in the different areas of organisation development and the role of the champion is to act as an internal change agent in the organisation. I am learning a lot from being part of this.
Of course, as with life in general, things at work can be unpredictable and sometimes precarious. Right now MPCU & PcERC are going through a hard time with funding, and we are energetically seeking donations to support our vital work. We are determined to keep planning and keep going in the face of hard times for the sake of those who rely on us, and I am keeping on top of our work plans and continuing to budget for the future of the Unit.
In March 2019 PcERC is launching an important fundraising campaign under the slogan - #bringinghope - this is really important for our future work and sustainability and we hope you will look out for it next month a consider supporting us.
I am so grateful for those of you reading this who have helped MPCU and PcERC to date and to those you who might be moved to help us in the future, thank you.
Grace (centre) looking dapper in her hat and flanked on either side by her colleagues, both named Liz!
Cairdeas is pleased to be a member of the Scottish Partnership for Palliative Care (SPCC). We firmly believe that networking, sharing, collaborating and learning together is the best way to promote and advance better palliative care for all. Whilst the focus of the SPCC is largely within Scotland, they regularly reach out to their neighbours within the UK, and to partners working internationally – such as Cairdeas - to learn about best practice and case studies from throughout the world.
We were delighted to have a number of Cairdeas delegates attend the SPCC’s annual conference, which took place in the Royal College of Physicians in Edinburgh in November, and to share the word about what we do via an information stand that we had on the day. It was a wonderful opportunity to meet faces old and new, and to hear fresh thinking from those who study and work in palliative care.
Chief Executive of SPCC, Mark Hazelwood, chaired the day, and kept delegates on their toes by using interactive technology to collect the names of a song or piece of music each of us would like to have played at our funeral. A dizzying array of songs and artists (from ABBA to Led Zepplin, Ave Maria to Bohemian Rhapsody) appeared on the screen behind Mark, which immediately set the scene for a day that was focused on the personal: a day of stories. Each of the speakers had his or her own unique take on the conference title: “The Sense of an Ending: stories, meanings and understanding.”
Kristian Pollock, Professor of Medical Sociology at the University of Nottingham, opened with a challenging presentation that was based around her qualitative research on end of life care. She gently challenged the notion of a ‘good death’ and reminded us to not to use the term as a whitewash or to use it to paint a picture of death through rose-tinted spectacles. Of course, we ought to all seek to have a ‘good death’, but we might be building unrealistic expectations if we do not also acknowledge the hard decisions and unanticipated feelings.
Christian Busch, Hospital Chaplain in Rigshospitalet, Copenhagen told us that, in his experience, people at the end of their lives often aren’t seeking answers but are seeking presence: a witness, someone to be there with them. His presentation drew on the work of Søren Kierkegaard, Danish philosopher, theologian and poet whose basis for helping others was: “to take care to find him where he is, and begin there.” Christianstressed that feeling extreme anxiety at the diagnosis of a life-limiting condition is a healthy and normal response to having lost control of all those things we once had control of. As a chaplain, he is there with people at the end of their lives to help them look backwards, and to look forwards; to help them identify what brings their life meaning and how to bring what is meaningful to bear in the last days of their lives.
Dr Donald Macaskill, Chief Executive of Scottish Care, also expanded on the importance of the psycho-spiritual care alongside medical care and pain relief. Scottish Care organisation has almost 1,000 care home/housing support services as members and he had many stories – not least that of his own grandmother - of exemplary care as people die. Hearing their story, reviewing their life was, Donald felt so important to brining that ‘sense of an ending’ for both those leaving and those staying behind.
This is always an inspiration day and we look forward to the next SPPC conference in September 2019.
Some of the Cairdeas delegates at the SPCC Conference - trustees, staff, and Cairdeas Faculty: Grahame Tosh, Dr. Mhoira Leng, Dr. Dave Fearon and Dr. Nahla Gafer
Dr. Dave Fearon is the Cairdeas Medical Director for the Sahara region. In this blog, he shares a fascinating insight into his work in Mauritania and the cultural differences that impact palliative care there.
“We at Cairdeas Sahara take a holistic approach to our patients. In addition to caring for their physical needs, we try to care for their social, spiritual, and emotional needs. As palliative care develops in Mauritania, we also acknowledge the need for a holistic approach to building capacity long term. It is not OK to just care for a few patients located in the capital and ignore the suffering of others. Therefore, we have an approach which incorporates training, advocacy and research. We are pleased to announce that we have recently had an article published in the respected Anglophone journal ‘Palliative Medicine’. This article is based on research that ran parallel to a national palliative care capacity building program sponsored by Tropical Health Education Trust (THET) and Johnson & Johnson, between 2016 and 2017. I would like to tell you about the study - the participants and results:
The participants: We carried out interviews and focus groups with 76 research participants recruited from across rural Mauritania. These included 33 out of the 75 health care professionals trained in palliative, 12 recently bereaved family members and 31 community leaders.
Results: Overall, we found that the principles of palliative care were warmly welcomed by everyone involved. But it was often the family with direct experience of losing someone who most valued what we were proposing. In the article we discuss the following:
The strong belief in destiny leads people to believe that illness only comes when God decides it, and that the person will die only at the date, time, and manner of God’s choosing. This view is based on a different perspective of human-God relationship than is found in Christianity. Death is not related to an illness, and therefore participants struggled with the idea of a life-limiting illness upon which palliative care is founded.
Doctors and nurses really struggle with communication regarding palliative care. In the past we have tried to train doctors and nurses in sensitively breaking bad news, such as a diagnosis of cancer or when it has to the bones. However, our research has illustrated how the problems with communication are much more fundamental. Doctors and nurses often provide no information, or misleading information. They fail to communicate the diagnosis or its treatment, irrespective of whether it is a simple, time-limited illness or a life-threatening illness.
Religious faith and cultural practices combine to create a uniquely Mauritanian perspective of a good death. No one is sure of where they will go after death and so the family try to look for reassurance and ways to increase the chances of their loved one getting into paradise. This occurs during life and after death, for example the family paying off any remaining debts left by the deceased.
This new knowledge and awareness has already been incorporated in how we train doctors and nurses in palliative care, and how we care for patients and their families. We are pleased that the nurse NDiaye, the champion of palliative care in Mauritania, was part of the writing team on this article. This will be his first academic publication and is a good start as he takes on more responsibility for the palliative care project over the coming months.”
Dr. Dave Fearon (top left) with a group of workers receiving their certificates in palliative care
A rural care worker with a small supply of medications for her village
A picture of the clinic in which the rural care worker is based
All in a day's work! A car is stuck in the sand during house visits
My name is Esther Nantongo Muyinga, I am a Registered Nurse currently pursuing a degree in palliative care and at the same time working in Mulago National Referral Hospital, Kampala, Uganda, in the palliative care unit.
Before joining the palliative care unit, I used to work on the wards and I used to come across patients who were challenging in their management, they had complex issues. Little did I know that the patient is supposed to be managed holistically to achieve quality of care and quality of life.
According to my experience before and after working with palliative care team, I have learned that when a person falls sick, it is not only physical body which is sick but that patients also tend to have other issues surrounding their sicknesses. If these are not addressed, it can be even more challenging for their health to improve and for healing to occur.
During my practice I have witnessed patients who don’t want to be discharged, even though the medical personnel may feel they are ok. And I have witnessed other people who change their faces to look like they are very sick when they see a Nurse or a Doctor coming in. One person has even whispered to me, ‘talk to the Doctor not to discharge me’ and another one requested me to admit her. All these circumstances mean that there issues that need to be addressed; issues that might be called psychological, psychosocial, and spiritual. My understanding about this grew after joining the palliative care team.
Have you ever wondered, why after giving a strong analgesic a patient may still remains in much pain? Or have you ever witnessed a patient who cries in pain after seeing a medical person, yet before he/she was conversing well with fellow patients. Both might mean there are unaddressed aspect of their lives.
In 2012 I had an opportunity to train as a link-nurse in palliative care for five days, helping to identify patients with palliative care needs on my ward. After identifying them, I could manage those at Level 1 – Level 1 being those who had symptoms that were easy to manage. Those I could not manage (Level 2), I consulted with the Doctor. If the patient’s symptoms were becoming more complex another palliative care team member was consulted (that’s Level 3), and when the team member could not manage alone, the whole team was consulted – which was Level 4. I did that for for four years.
In 2015 I was brought on board and joined the palliative care team, but I felt that I was depending on the little knowledge and skills. I had a challenge of not being recognized as palliative care personnel as I had no qualifications to show. Despite having some knowledge and skills, I feared documenting in the patient’s files.
I thank God for the palliative care team because they have been so encouraging to me in taking this degree in palliative care. I know I will make it with God on my side. As of the 7thOctober 2018 I have finished writing examinations for the first semester of the first year. As I learn, I grow and I know I will be of much help in addressing palliative care needs of palliative care patients.
Esther Nantongo Muyinga, who is currently pursuing a degree in Palliative Care with the support of Cairdeas
We do not intend the Global PC Day, which took place on 29thNovember 2018, to have been a talking shop. We want to learn from it, and we know that those who came along to share and listen and learn, also want to make a difference. All of us in the field of palliative care seek to ensure that health inequalities between nations are levelled out and, in keeping with the title of the conference, that ‘none are left behind.’
During the day of the conference, between the individual presentations, there were compelling group discussions that continued, informally, throughout lunchtime. Many had flown in specifically for the conference, bringing direct experience of their overseas work to bear.
Where palliative care sits on the pecking order of health needs was a hot potato for some. In many low-income countries more generalised healthcare and access basic services is prioritised above palliative care. There was a discussion about advocacy, lobbying and the opportunities arising from both the WHO Declaration and Lancet Commission Report in advancing the case of the palliative care and in raising it to the level of other important primary health care needs.
An ongoing theme was that of holistic care – treating the whole person by understanding their suffering and building a package of care around their stated needs. This is about listening, it’s about piecing together the jigsaw to meet the needs of the person and not simply the illness. For example, talking about what matters to the person and asking, “what brings your life meaning?”, and then enabling them to do more of what matters to them was felt to be core to good palliative care.
Despite the strides that have been made in recent years in raising the profile of palliative care, one breakout session discussed the need for ongoing awareness-raising and how further understanding needs to be built to support specialisation in palliative care.
Of course, given the global aspect of the conference, the issue of culture was high on the agenda, and many examples were provided as to how different cultures impact on the work of doctors, nurses, social workers and religious leaders. Learning how to tailor palliative care appropriate to the prevailing culture was deemed key. For example (but by no means exclusively) within the Muslim culture it can be a challenge to discuss and present a prognosis of having a short time left to live.
Models of integration were discussed. One of those presenting noted that the World Health Assembly set the policy in 2014, but asked, how we might now integrate this into clinical practice?
Delegates left the conference energised and enthused for the future and with increased determination that they would contribute to more equitable palliative care globally. We look forward to seeing both familiar and new faces at the 2019 Global PC Day when it comes around again at the end of the year.
Young delegates at the 2018 Global PC Day in Edinburgh - Doctors Hannah, Kerry, Rachael and Grace
Delegates during one of the breakout sessions
One of the groups discuss how cultural issues come into play in palliative care
Victoria is the note taker for group three, deep is discussion
A fairly typical cold and wet November day in Edinburgh was significantly brightened for all those who attended the Global Palliative Care Day in St. Catherine’s Argyle Church on the south side of the city. Jointly organized and run by Cairdeas, The University of Edinburgh’s Global Health Institute and the International Children’s Palliative Care Network (ICPCN), it wasn’t simply the scope of the presentations that made it ‘global’, but the participants from nine different countries, who represented cutting edge palliative care research, policy, and practice from around the world. Delegates from the UK included primary healthcare researchers, palliative care (PC) Registrars (from London, Manchester, Newcastle and Glasgow), students completing their Masters Programmes in areas related to PC, and GPs and Consultants with specialisms in PC.
Professor Julia Dowling focused on the five key messages of the Lancet Commission Report stressing that, in keeping with the call for universal access, palliative care is notan optional extra. Given Julia’s background (ICPCN) she understandably has an emphasis on the palliative care needs for children, telling us that $1 million would cover the morphine needs for children globally, a paltry figure in today’s million pound budgets.
Some of the most memorable moments of the day came from the real life stories that were told by in-country doctors such as Dr. Mhoira Leng, Medical Director of Cairdeas. Mhoira told us about Diane, who had end-stage organ failure and leg lesions and was receiving medical treatment in Kampala. Restricted to a hospital bed, the most important thing for Diane was that she didn't feel abandoned and that she had someone to talk to. Mhoira told us, “Palliative Care means dignity, and treating Diane as a whole person gave her the dignity she needed.” Dr. NahlaGafer, who works in Sudan, had similar stories to tell, relaying the words of one patient who told her, “when I come to the clinic, I feel like I am not a sick person – I feel like I am coming to meet my friends.”
In the context of global news, we constantly hear about refugees being refused entry at borders, turned away, ‘contained’, or shunned. It was heart-lifting, therefore, to listen toDr. Gurswan Purewal present on the her work with the refugee population in Adjumani District in Uganda. She spoke of how the local population welcomed the refugees, referring to themselves as the ‘host’ population and calling the refugees’ region as a ‘settlement’ as opposed to a ‘camp’. But behind the semantics, there lies a very real sharing of heath and social care resources between the host population of 240,000 people and 260,000 refugees – would that we were all so sharing.
The following is a list of the presenters and the topics on which they spoke:
Prof. Julia Downing– Severe Health Related Suffering - a new paradigm in Lancet Commission Report;
Dr. Sebastian Moine– Astana and Palliative Care;
Dr. Mhoira Leng- 10 year evidenced based review from Makerere University and Mulago Hospital (MMPCU), Uganda;
Dr. Dan Munday – Developing and implementing the SPICT-LIS;
Dr. Nahla Gafer– Pioneering palliative care in Sudan;
Joy Kemp– Palliative care and midwifery – commonalities in health partnerships,
Appraisal in the refugee population in Adjumani District in Uganda;
Dr. David Fearon– pioneering palliative care in Mauritania;
Dr. David Butler -PRIME UK Teaching palliative care in different settings; cultural issues;
Dr Gursaran Purewal- Rapid Systems Appraisal in the refugee population in Adjumani District in Uganda;
Dr. Laura Tupper - Lessons from Chile.
All of the presentations have been made publicly available under the resources section of the Cairdeas website – for quick reference follow this link.
Professor Scott Murray, Dr. Nahla Gafer and Professor Julia Dowling deep in conversation during a break in proceedings
Visiting Bethlehem and the West Bank is such a privilage and yet holds many contradictions. Wandering the ancient streets and enjoying coffee with a local man who tells me stories of the old days and his faith for the future; staying at the beautiful Dar Sitti Azziza with Nabiil and Emily and hearing stories of centuries of this orthodox family; time with the faculty and Dean, Dr Mariam Awad, in the beautiful Franciscan Bethlehem University and see the students and staff thriving despite many many challenges not least those presented by 'the wall'. Exploring the back streets of Hebron to find amazing coffee and remember Abraham's decision but also see the tension and poverty of this ancient city. Climbing Herodian Hill and thinking of the hills and valleys Mary and Jospehy navigated....when about to deleiver her first baby!!! I have an unusual nativity scene bought next to 'the wall' in Bethlehem which shows the Wise Men challenged as they try 'come and worship'.
In the midst of this let me intoduce 2 shining stars for me who are working to mprove the lives of their patients and families and the wider population. Let me tell you about Dr Amal Awad, Director General of Education in Health and Dr Rania Shahin, Director of Pharmacy at the Palestinian Ministry of Health. They have worked together to ensure availability of oral morphne in sustained released and immediate release tablet formulations as well as oral oxycodone syrup for children. They are then rolling out education and training accross West Bank usuing a guideline adapted from our work in Uganda. It has been my privilege to work with these and other colleagues and amazed at their efficiecny and efffectiveness as they listened to the evidence, changed formularies and started to institute change. I am looking forward to visiting next year and offering further support but also to know there will be many many people receieving pain relief this year because of this work.
Let me share Dr Awad's words 'Two Pain management Protocol workshops were conducted by the General Directorate of Education in Health in coordination with the General Directorate of Hospitals and the General Directorate of Pharmacy. The main purpose of the workshops was to respond to one of the main CPD Needs highlighted by physicians, midwives, nurses, and pharmacists in response to patients’ concerns of under prescription or over prescription. The workshop targeted systematic pain management according to global standards using a unified pain management protocol within hospitals to clarify misconceptions regarding pain management.
In consultation with Dr. Mhoira Leng the standard training workshops agenda for pain assessment and management was developed and conducted twice to facilitate access for health care providers. The first workshop was conducted in Ramallah for the North area of the West Bank on November 22nd , and the second workshop was done on December 9th in Bethlehem for the south area of the West Bank. The following was our agenda for the workshop:
Welcoming and introduction
Pain Protocol using a person-centred approach within a multidisciplinary team/ Presented by: Dr Amal Abu Awad
Physiology, Pathology, and Assessment of Pain/ Presented by: Dr. Nizar Taraweh
Taking pain management forward; non-pharmacological approaches/ presented by: Mr Bashar Qashu
Pharmacologic Treatment of Pain /presented by: Dr Safa Blaibleh
WHO ladder in the management of Pain: use of opioids including oral morphine./ presented by: Dr Layla Al-Khayyat
Discussion and Steps Forward/ by all presenters
Many thanks goes to our supporting partners UNFPA, MAP-UK, all our presenters, and to Dr. Mhoira.
Let us always remember that together as a team we can make a difference in decreasing the suffering of our patients.'
As we see this huge step forward in West Bank we also hope and to see pain relief available for so many in need in Gaza.
It is humbling to reflect on the amazing peoeple we have worked with this year..and the many many challenges still faced to bring relief of suffering. We will share more soon about the serious crisis of funding for colleagues in Uganda. Meanwhile, may this bright hope from Bethlehem inspire us all this Christmas season as we pray for peace and remember the Prince of Peace.
Hilly road to Bethlehem
Signposting in Bethlehem
Pain workshop; Dr Amal Awad centre
Traditional Palestinian dress; beautifully modeled at the Palestine Cancer Conference
Cairdeas has formed a UK Focus Group and wishes to attract new members to come on board. Read on to decide if you might be interested in joining this sub-group or participating in the wider aspects of its work within the UK to bolster and support our core work overseas.
This group has a wide remit and here are some of the ways you can get involved and help Cairdeas whilst based in the UK.
1. RAISE AWARENESS of the remit, work, and impact of Cairdeas. Perhaps you would be available to speak about Cairdeas at church gatherings, coffee mornings, to represent Cairdeas at relevant conferences, etc.;
2. EXPANDand GROW the UK donor base by helping to spread the message of our work in your community, family and friends;
3. COLLABORATE with us: pursue partnership working, if you are part of a like-minded organisation there might be potential for making joint funding applications;
4. ADVOCATE for Cairdeas where there is any potential to represent Cairdeas’ work – for example, advocating for global palliative care, linking with Scottish and UK parliament;
5. ENGAGE in specific areas of work – whether at home or abroad, via the Cairdeas Faculty, explore opportunities for volunteering at Cairdeas;
6. ASSISTANCE in developing educational and curriculum resources, online courses, training, etc.
7. SUPPORTand NURTURE others; offer encouragement and mentoring to volunteers committing to international placements with Cairdeas;
If you could help in any of these ways, please email firstname.lastname@example.org
At Cairdeas we are committed to offering support for staff development through scholarships that have a direct impact on patient care. These scholarships make a huge difference to the community and we welcome any donations to allow this work to continue and expand.
Toko Friday is part way through his training via one such scholarship and he describes the difference it is making to his life and the lives of others.
“My name is Toko Friday and, thanks to Cairdeas, I have started a degree in social work and social administration in Kampala. Once qualified, I will continue to apply to my work in the field of palliative care. Already I am learning so much, and enhancing my knowledge and skills to empower me to perform better in my role asa volunteer coordinator. This training, alongside my daily work, is showing much fruit. I am learning how to research and write volunteer policies and procedures, including risk assessments; this includes describing appropriate volunteering opportunities and writing up roles based on the needs of the organisation. I am learning how to manage budgets and helping with some fundraising to sustain our project. In any one day I can be reading up on legislation and policies related to volunteering or writing monitoring and evaluation reports for funders. There is variety in the course, for sure!”
“The training supports my ongoing role in the Sanyu Ministry at Lugogo Baptist Church where I work closely with the staff from Makerere & Mulago Palliative Care Unit and the Elders board. Together, we match the skills of volunteers with the hospital’s needs for assistance. I arrange for volunteer orientation and training and I schedule all volunteer activity. I keep records on how many volunteers we have, when they volunteer and for how long. For me, the main gift in the work I do is the pastoral care and support to I am able to offer patients.”
“A few weeks ago a young woman whose child was very ill and then died, came to thank the church for all the support she was given during this very difficult time. She said, ‘I thank God for this team’. Another patient told us, ‘I want to thank God for bringing you into my life, I feel loved and cared for.’”
“Overall, the most important thing for me is being able to create a difference in the lives of patients and families through listening to their worries and concerns and being able to bring hope and joy by creating a smile on their faces amidst pain and suffering. This work is indeed, a blessing.”
If you are able to help Toko, and others like him, to build their capacity in delivering quality palliative care in Uganda, please consider making a donation to the work of Cairdeas. Click here to find details of how to donate to specific appeals or to set up a one-off or regular donation to the work of Cairdeas.
Toko and the Sanyu team share their work at the Cairdeas/MMPCU 10th anniversary conference
Cairdeas is delighted to have amazing partners in Uganda who are forging ahead with plans for the next five years. The newly launched Palliative care Education and Research Consortium (PcERC) working through a partnership with the Makerere & Mulago Palliative Care Unit (MMPCU) have just launched their next five-year Strategic Plan. Mapping the way ahead for the period 2018-2023, the plan presents clear and achievable strategies under five thematic areas: Clinical Service Provision; Education; Research; Advocacy; and Sustainability. You can find a copy in the Resources section of our website under 'MMPCU and PcERC'
Exemplary patient care is the ultimate aim of good clinical service provision. Under this first theme, the plan describes how physical, social, psychological and spiritual needs will all be addressed in caring for patients. This will require integration and joined-up working within and across primary and hospital care teams. One patient said, “They talked to me, encouraged me, and helped me to get medication. The pain has become manageable. There was tremendous improvement. I did not feel like the way I was when they first found me.”
Strand two of the strategic plan, education, is concerned with providing education, training and capacity building for healthcare workers, allied health professionals and volunteers at all levels. PcERC is aligned with the education vision of MMPCU, Makerere University, and Uganda’s Ministry of Health, all of whom seek to integrate palliative care competences across health and social care curricula. The education strand of the strategic plan seeks to go further in ensuring palliative care is also mainstreamed into theology and community programmes. This change of approach has already affected many doctors and nurses for the better, with one saying, “Palliative care has made a huge impact: I now see the patient as a person and not a disease. I don't avoid difficult conversations. I see them as part of a family. I do holistic care. It was not like that before.”
The third element of the plan, research, seeks to continue to expand the evidence-base for palliative care by building on research collaborations within and outside palliative care service provision. Understanding what works best for the patient, what delivers best outcomes, must be underpinned by solid evidence. PcERC will continue to promote the research culture already prevalent amongst its partners, and seek to review, disseminate, and publish findings with a view to influencing and improving policy and practice. Speaking of their hunger to ask questions and find out more, one researcher said, “The training, whilst I was doing my Bachelors in palliative care, has helped me to continue with research, trying to find out: if I do this, then what?”
Advocacy to enhance and promote academic and clinical credibility for palliative care, is the fourth strand of the strategic plan. PcERC will seek to work in partnership to advocate for Universal Health Coverage, acting as a voice for those most vulnerable groups living with chronic illness such as: migrants and refugees; children and the elderly; those in need of legal support; and those affected by poverty. PcERC pledges to work collaboratively both in Uganda and internationally and to continue to advocate for those who are denied any or adequate palliative care treatment. A senior nursing colleague in Northern Uganda who is part of PcERC and Cairdeas partnership with Peace Hospice, Adjumani spoke of what she has seen through the work of palliative care: “Someone needs to speak for the voiceless. When help comes, people change, then hope appears suddenly like the sun.”
There is no decrease in the number of people requiring palliative care and so the final element of the strategic plan - sustainability - is essential in ensuring the continuing needs of patients are met. PcERC seeks to develop a well-resourced palliative care unit, with sufficient personnel and infrastructure capable of supporting a Ugandan-led palliative care programme into the future. This will require effective and responsible use of financial resources, good governance, and robust monitoring and evaluation systems. PcERC will also, where appropriate, seek to attract grants, consultancy projects, and partnerships that will add to its financial sustainability and growth.
Grace Kivumbi, a member of the Board of Directors for PcERC said,“I see this as an opportunity to grow and expand our services to other institutions were many patients are suffering in pain but without access to the much needed palliative care but also as a means towards sustainability of the service.”
Key to this is the establishment of sustainability and PcERC and MMPCU is working hard with University and MOH colleagues. However it is also seeks to develop a direct donor network. Would you like to be involved in directly supporting this work or to give to Cairdeas as we seek to strengthen partnerships and sustainability? Think about donating here.
MPCU senior advisor and PcERC chair, Dr. Mhoira Lengspoke of the “privilege it is to have been invited to lead developments of the past 10 years and now to see PcERC launched and moving forward. We are praying the current significant resource challenges have some movement and that the amazing MMPCU team can continue to grow, train, inspire and care for those in need.”
Sometimes called ‘the father of palliative care in India’, Dr M.R. Rajagopal was in Edinburgh this week as guest of honour at a screening of a documentary on the achievements of his own extraordinary life. Entitled, "Hippocratic: 18 Experiments in Gently Shaking the World", it was hosted by EMMS International. The rapt audience, who had gathered in Royal College of Physicians, were soon to learn the truth of an introduction that described Dr. Raj as: “passionate, not timid; gentle, but effective.”
Originally from Kerala, in the south of India where he started his pioneering work, he is now the Chairman of one of the world’s largest networks of palliative care provision – Pallium India. Long time friend of Cairdeas, he has a close personal and working relationship with Cairdeas’ Medical Director, Dr. Mhoira Leng, and Cairdeas recently supported his visit to Uganda as the keynote speaker at their 10th anniversary conference.
Both his sincerity and passion are clear in everything he says and does. “Pain relief medication isthere,”he told us, “it’s just not getting to those who need it.”
He spoke openly and honestly about the significance of the Hippocratic Oath, and how its principles underpin and drive his work. He quoted elements of the oath verbatim, wrapping himself in its mantra of care and dedication:“I will remember that there is art to medicine as well as science, and that warmth, sympathy, and understanding may outweigh the surgeon's knife or the chemist's drug. Above all, I must not play at God.”
Without doubt, access to pain relief medication was highlighted as an enormous issue but so, he told us, was one’s attitude to serving their patients. “We have the power to destroy with a few words, or to lift up with a few words.” He guarded against the medical profession becoming trapped in their heads and detached from their hearts as he emphasised that the treatment of the person is as important as the treatment of the pain.
Again and again, he stressed how ‘good’ palliative care must treat the patient with care and respect, not simply treating them as a receptacle and ‘attacking’ a disease. Human beings, he told us, are much more than just containers of disease. In a room filled with doctors and nurses he reminded those present from the caring profession that they are in a position of ‘huge privilege’; but one that requires empathy, one that asks you to walk in the shoes of another, one that requires you to understand the suffering of fellow man.
Over the years Dr. Raj has drawn much inspiration from his fellow countryman, Mahatma Gandhi, whom he often quoted. “Recall the face of the poorest and weakest man you have seen, and ask yourself if this step you contemplate is going to be any use to him.” This line from Gandhi informs Dr. Raj’s decision making every time as he strives to serve those in the depths of poverty with nothing; a poverty, he told us, which Gandhi called, “the worst form of violence.”
Towards the end of the film, Dr. Raj said very simply: “When I started to work in palliative care, I started to learn about life.” If you ever need a reminder as to why you are working in palliative care, or why you are supporting the work of those delivering palliative care, please get your hands on this film and watch it. It will teach you so much about life.
Dr M.R. Rajagopal, Chairman, Pallium India; Eimear Bush, Operations Director Cairdeas IPCT; Dr. Amy Hardie, Director, Scottish Documentary Institute
Dr. Mhoira Leng of Cairdeas and Dr. M.R. Rajagopal of Pallium India, pictured a few years back in India
Day two (10thAugust 2018) of Cairdeas and the Makerere & Mulago Palliative Care Unit’s (MMPCU) 10thanniversary conference was opened by Professor Liz Grant, from the University of Edinburgh. She began the day by highlighting how partnership work in Kampala has influenced, contributed to, and shaped palliative care globally. Prof. Liz framed palliative care in the context of the Sustainable Development Goals(SDGs); that collection of 17 global goals established and agreed by the United Nations Development Programme. She argued that good models of palliative care – such as those being pioneered by Cairdeas and MMPCU - help achieve SDG number three: Good health and wellbeing for people. Dr Grant also suggested that good practice within palliative care is replicable acrosswider health systems, and that the palliative care model in Uganda is an excellent response to the call for universal health care.
Dr. Jackson Amone then described the journey of palliative care for those with a serious or life limiting illness. He made clear the importance of a palliative approach throughout the course of an illness, but did not skirt the issue of the significant gap, globally, between the need and the availability of palliative care services. Dr Amone commended Uganda’s Ministry of Health in its commitment to ensure a consistent and reliable supply of free patient morphine.
Ensuring that the right care is available in the right place and at the right time, were elements of a conundrum explored by Dr. Sam Guma. He stressed the importance of continuum of care and explored factors that affect the delivery of a quality service, including timely referrals and the availability of services.
A discussion on the importance of the spiritual component of palliative care was led by Ivan Odiit Onapito. Ivan described a study that was undertaken with patients in Mulago Hospital to identify their feelings from diagnosis to treatment. The study raised several key themes including the importance of listening to the patient and the value of being present. Ultimately, it made clear the enormous value to be had in listening to patients’ stories. He concluded that spiritual support is an essential part of palliative care and he made a strong recommendation for ongoing mentorship for spiritual providers in palliative care to help them become better versed and equipped in the palliative approach.
A number of speakers delivered papers on palliative care in relation to specific diseases: Palliative care in end stage renal disease (Dr Peace Bagasha); Integration of palliative care into standard oncology (Dr Henry Ddungu); and Experiences of patients living with heart failure (Dr Elizabeth Namukwaya). Each concluded that holistic care is essential, and presented evidence that integrating palliative care results in improved outcomes across the board.
The practice of integrating palliative care was described Dr Nahla Gafer in a set of cases she presented from her work in Sudan. She highlighted how her work is bolstered by an effective programme of training and the partnerships with CairdeasIPCT, MPCU and University of Edinburgh.
Palliative care and mental health, palliative care and refugees, and palliative care and the elderly were three thematic areas addressed respectively by Professor Chitra Ventkateswaran, Vicky Opia, and Dr. Harriet Nankabirwa. In each presentation, compelling arguments were made to: address the mental health burden evident in palliative care; integrate palliative care into humanitarian emergencies; provide comprehensive geriatric assessment for older patients needing palliative care.
MPCU senior advisor and PcERC chair, Dr. Mhoira Leng, lent her full support to Dr Marcia Glass’s call to continue to establish, strengthen and build on the opportunities emerging from the many partnerships that are in place and have been cemented as a result of the conference.
“What a privilege to share the work of MPCU and our partners. It is exciting to see all that has been achieved but particularly to hear from those affected by chronic illness such as Helen. We need to be a voice for the voiceless and ensure we offer care with compassion and quality. As we launch the Palliative care Education and Research Consortium (PcERC) we move forward with the vision of palliative care for all.”
Day Two Running Order of Cairdeas and MMPCU's 10th anniversary conference
Sanyo team from Lugogo Baptist Church: 'Bringing joy, bringing hope.'
Dr. Peace Bagasha with ACN, Beatrice Amuge, chairing.
Naha Gafer bringing her pioneering work in Sudan to focus.
Long term friend and partner for Cairdeas International Palliative Care Trust, Chitra Venkateswaran, sharing her passion for those living with mental health problems and the model of MEHAC.
A few weeks on, and it is time to reflect on Cairdeas and the Makerere & Mulago Palliative Care Unit’s (MMPCU) 10thanniversary conference, ‘Building Momentum for Palliative Care’.
Dr Mhoira Leng opened the conference (day one, 9thAugust 2018), setting the scene by reflecting on the Lancet Commission Global Access to Palliative Care and Pain Relief. Dr Mhoira’s work, and that of her partners, directly responds to the crisis the Lancet Commission have highlighted: that at least 80% of those experiencing serious health-related suffering (SHS), live in low and middle-income countries where access to basic palliative care and pain relief is severely lacking or unavailable.
Professor Scott Murray, from the University of Edinburgh, was optimistic in his address; particularly in relation to what was being achieved in Uganda, saying: “Inspiration is like a deep breath and we should take a deep breath and prepare ourselves to show how Uganda is leading the way in palliative care.” He recognised Cairdeas and MMPCU’s engagement in a multitude of activities such as research and the development of resources to support the delivery of the palliative care approach.
Palliative care as a basic human right was the subject of Dr Henry Ddungu’s input to the conference. Dr. Ddungu spoke of the individual’s right to dignity, and how freedom from pain and access to sufficient and efficient pain medication is a basic human right.
The panel discussions that followed these inputs spoke of how partners are pursuing the highest standards of palliative care, aligning with best practice and, always, putting quality patient care at the centre of every piece of work.
The keynote address for the day - ‘Inspiring Hope’ - was delivered by guest of honour, Professor MR Rajagopal, who himself is the embodiment of hope. “I believe that there will be more good in this room today than in most parts of the world,”he said in his opening remarks. He presented a ‘new normal’ for modern healthcare; one that goes beyond treating disease, one that tends to the physical, social and mental wellbeing of our community. He spoke about those on the margins; neglected populations such as women, LGBT, those with difficult to treat diseases, and those with mental ill-health. He spoke of the challenge and the responsibility to treat without discrimination, to afford everyone the same high quality healthcare.
A representative for Uganda’s Minister of Health, as part of a panel discussion, congratulated Cairdeas and MMPCU on the exceptional quality and impact of their work, and re-emphasised the Ministry’s commitment to work towards becoming a world leader in palliative care.
The afternoon session on education and training saw wide-ranging inputs from healthcare professionals presenting first hand case studies and research findings. Professor Julia Downing, from MMPCU and the ICPCN (International Children’s Palliative Care Network) emphasised the pivotal role of nurses in palliative care and she described positive impacts of a capacity building / nurse training programme which started in 2015, funded by the Tropical Health Education Trust. Nurse, doctor and student inputs all followed: Elizabeth Nabirye presented evaluation findings of a nurse-prescribing programme for morphine; Professor Harriet Mayanja looked back on the journey of palliative care training and degrees in Makerere University; and Dr Bogere Najib described the experiences and challenges of practicing palliative care as a resident.
An account of the Master of Medicine (MMed) training programme in Rwanda was given by Dr Jean Pierre Siboma. This is one of the many partnerships that Cairdeas and MMPCU have developed globally, in order to develop capacity, learning and growth outside of Uganda. This led onto Dr Margaret Tumwebase presenting an evaluation on the potential of e-learning for palliative care and described the array of tools available for e-learning.
Messages of support for the conference were received from around the world:
“Congratulations and continue the important clinical and capacity-building work you are doing! You inspired me to pursue a career in competent cross-cultural palliative care and I’m extremely grateful!” Dr Danny Low, USA
“Greetings to all my friends and a happy 10th anniversary! Congratulations on all your achievements over the years,which have transformed the lives for so many. What a privilege it has been to be part of such an amazing team and continue those relationships across countries. Look forward to future collaborations.” Dr Gurs Purewal, UK
NOTE: all of the presentations made at the conference will be available on the resources section of the Cairdeas website https://cairdeas.org.uk/resources
Faculty gather for the conference
Day one conference running order
Vicky Opia inspiring us from Adjumani
Moment of prayer
Helen, patient's relative shares her experience
Messages of encouragement from across the world
Ministry of Health essential support; Drs Amone and Amandua
This week, on the 9thand 10thof August, Cairdeas will formally celebrate 10 years of partnership working with the Makerere & Mulago Palliative Care Unit (MMPCU). The decade of achievement will be marked by a conference in Makerere University drawing together an international panel to speak on the theme of: ‘Building Momentum for Palliative Care’.
From Scotland, India, Sudan, Rwanda, USA and Uganda, delegates will speak on policy, practice and research, showcasing the cutting-edge, evidence-based palliative care practice that has been making an impact in Uganda and elsewhere. The conference is honoured that Uganda’s Minister of Health will be represented.
Mhoira Leng, Medical Director of Cairdeas and Head of Palliative Care for the Mulago and Makerere Palliative Care Unit, said, “I am humbled to be part of a movement for palliative care in Uganda which began 25 years ago. I am also filled with hope as I witness those working alongside me, nationally and globally. We all have a common goal, that of seeking an end to needless suffering through ensuring the choices and needs of those living with chronic illness are respected and met within the context of Universal Health Coverage and palliative care for all.”
The voices of patients, their families, and volunteers will also be heard at the conference as those affected will explain, first hand, how values-based, person centred care has had a profound impact on their lives. Themes such as palliative care and mental health, palliative care and refugees, and palliative care and the elderly will all be explored. Cairdeas’ Christian ethos will, of course, be in evidence at the conference with an input on, ‘spiritual narratives within palliative care’.
The strap line for the conference, ‘transforming lives, changing systems, bringing hope’encapsulates the work, ethos and dynamism of Cairdeas whose positive achievements have been further strengthened through local partnerships. Specifically in this instance, Cairdeas’ partnership with MMPCU is testament to the adage, 'together we are stronger’; for together they have notched up some remarkable achievements: a centre of excellence for integrated Palliative Care services in Mulago National Referral Hospital; pre-service and in-service training of health professionals; and clinical modelling supported by clinical protocols and evidence based medicine.
Also during the conference, MMPCU will launch its five-year Strategic Plan in partnership with the Palliative care Education and Research Consortium; the overarching goal to provide quality palliative care for all in Uganda and beyond. The plan is underpinned by five strategic areas - clinical service provision, education and training, advocacy, research, and sustainability - each of which will considered and discussed over the two-day conference.
Places are still available. For further details please contact:
email enquiries: email@example.com
telephone enquiries:+256 (0)754 299919
Venue: Davis Lecture Theatre, Deans Gardens, College of Health Sciences, Mulago Hospital, Uganda.
June 2018 sees the launch of our annual Purple Party campaign! More details will be shared very soon, but this is where we encourage our friends and supporters to host a ‘Purple Party’ in order to raise awareness and raise more friends in global palliative care. However for those of you with culinary brain freeze, it might be daunting to think what to serve at a purple party, so here we’ve prepared some suggestions to get you thinking! Of course, other recipes are available… And most importantly we don’t want anyone feeling put off by the cooking, the most important thing is getting people together regardless of the colour of the food!
Make it fancy…
For anyone feeling adventurous, why not try a purple layer cake, or a purple forest cake… Or how about attempt a purple twist on the classic red velvet cake?
As a healthcare charity, it would be remiss of us not to advise healthy eating! Fortunately there are numerous delicious fruits which fit the purple bill… so how about putting together a fruit bowel of grapes, plums, blackberries and blueberries?
Make it natural…
Vegetables in baking are perhaps more common than you think! The classic carrot cake has been joined by parsnip cake and most relevant for our purple parties, beetroot! Not only will you have a guaranteed moist and succulent delicacy, but also a great natural purple colouring! Alongside blueberries and blackberries, below are a few ideas for naturally purple confectionary!
Of course, you might feel more comfortable sticking with your own tried and trusted recipe… so you could always just add a splash of purple colouring to your mixture or icing for a quick and easy result. Or even simpler, if you aren’t even a baker then you could just put out some purple chocolates (there are many out there) or shop bought goodies…
Finally you don’t have to eat purple to make your party purple. Beyond asking your guests to come dressed in purple, you could just accessorise your event with purple cupcake cases, purple napkins or even just a vase of purple flowers!
One of the names given to the tiny baby born in a stable in Bethlehem over 2000 years ago is Prince of Peace. This message was emblazoned accross the skies as angelic beings sang the good new of hope and peace for the world to a terrified but excited group of shepherds...one of the most socially invisible groups in society. Who would believe a shepherd was chosen by God for a worldwide message of peace...and who would be similarly excluded in our societies!
In palliative care we have the honour and responsibility to support values based health care that respects the dignity of each person and family and seeks to relieve suffering and support quality of life. I think of palliative care as bringing this message of hope and peace to people and families who are struggling, fearful, hopeless and in pain...and to seek to ensure this care is available regardless of the poverty, geography, lifestyle, setting or illness...truly palliative care for all as part of health care for all.
Earlier this year I was sitting in Bethlehem a short distance from Manger Square, Star Street and the beautiful Church of the Nativity where so many pigrims and tourists flock. Instead I was gazing at the dividing wall cuting accross this land like a terrible scar and representing such fear, anger, injustice, hopelessness and lost opportunities.I was reflecting on the lack of peace in the Midde East and the sadness for those divided and hurting in so many ways. This wall continues to grow and yet some adorn it with grim humour and statements for unity and peace. I meet so many people working to survive, to make a difference, to seek justice and peace.
I was privileged to be in Gaza twice this year. Firstly with Medical Aid for Palestine on a scoping visit for breast cancer support along with several Scottish colleagues inlcuding Dr Phillipa Whitford UKMP. (see https://www.map.org.uk/news/archive/post/747-mapas-breast-cancer-care-in-gaza-aliaas-story) We hope this will become a formal multidsciplinary prgramme incorporating palliative care. I was also able to work with amazing colleagues from IUG (Dr Fadel Naim and Dr Khamis Elessi) and the UK (Dr Janet Gillett and Dr Kathey Myers) to deliver the second undergraduate training in palliative care and celebrated the work of Cairdeas through #cairdeaspurpleparty on World Hospice and Palliative Care Day. I was also able to joinng the steering group discussions led by IUG, MOH, WHO, UNRWA, PMRS and others and discuss ways to support in the future. Next up is a new Diploma in palliative care which is almost finished the development stage and we look forward to supporting in partnership.
However the situation in Gaza is a humanitarian disaster deteriorating each day. Electricity may be available only a few hours a day and this affects basic services such as sewage management and of course affects hospitals. Essential medications are often low or stocked out..60% of cancer medications and NO ORAL MORPHINE at all. Travel permission may be given for travel outside Gaza for essential treatments such as radiotherapy in East Jerusalem or the West Bank but in pratice more than half who would benefit are denied. In Gaza people are simply trying to survive and praying for peace or at least for basic freedoms to travel and receive health care. In Bethlehem, the city is beng dwarffed by the settlements (illegal in international law) and choked by the snaking wall.
Let me tell you a couple of stories. Abdul (name changed) was talking with the medical students about his experience of living with advanced sarcoma and clearly in significant pain when suddenly the door burst open and he was given his permission papers for travel to East Jeruslem and Ramallah. In the happy, frustrated, noisy chaos he desparately asked...'do I need pain control and radiotherapy or surgery more?' As he got ready television cameras arrived and in between filimng (which included me) we gave him some advice re pain medication and tried to ensure he would see someone who could help. In fact his cancer is now very advanced but at least he will get good palliative care interventions. His words 'I feel I have been given back some dignity'
Another young woman has delayed coming with her breast cancer as she was so scared of having a mastectomy. She has not long delivered her youngest child but knew the risks as several members of her family have died of breast cancer including her mother (in her forties). After some counselling and support for her and her husband from the Gaza and MAP teams she agreed for further treatment for her now advancing disease and we are hoping and praying she will be allowed to travel for radiotherapy after her surgery. The surgeon learnt from the encounter as his initial reaction had been 'This is one young woman who does not want surgery and I dont feel comfortable discussing it' yet he was able to see good communication and take part in the discussion and treatment decisions.
An older lady has just found our her breast cancer diagnosis and was looking sad, sitting quietly with her sister. The clinics are busy with no nurse specialists and most trainied to offer physical support and not psychosoial or spiritual. We spoke together, supported by translation, and she talked of her sadness at never having children, her husband who has already died, her frail mother with diabetes needing amputaton and now this cancer diagnosis. 'I feel so sad but I am trusting in God, Hamdulilah'
There is a new report on palliative care, the Lancer Commission (see Resources section), that shows once again the overwhelming need for palliative care and coins a new term, serious health related suffering. New ways looking at this age old issue of suffering and pain are needed but most of all we need to mobilise individuals, communities, civil society, faith communities, social entrepreneurs and governments to address this huge need. In Cairdeas we are privileged to work to build capacity, raise awareness and develop training to do our part in ensuring that one of the most excluded groups in our society has the care they need and deserve in 2018 and beyond. This includes refugee and migrants groups such as those affected by chronic conflict in Gaza and the huge refugee camps for South Sudanese in Northern Uganda. We are glad to be part of a network seeking to find solutions PALCHASE.
My thanks to all we have partnered with in 2017 and to the privilege of visiting and working in Uganda, Rwanda, India, Nepal, Gaza, West Bank and to our friends in Mauritania with Cairdeas Sahara. Thanks to the amazing team in Makerere and Mulago Palliative Care Unit and Palliative care Education and Research Consortium where I am based much of the year. Thanks to IAHPC for their amazing work and the honour of being a board member. Many thanks to all our supporters and those who volunteer their time and expertise. Please remember our Christmas Appeal which will allow our partners to become sustainable, to care for refugees and to be trained. Follow us on Twitter @CairdeasIPCT and on FB or sign up to get more involved.
Visiting the places so familiar in the Christmas story was a privilege ...and also to visit and think beyond the nativity scene to the life and example of Jesus as he lived and died and brings to fulfillment this message of hope and peace to all men. May all wall’s come down...the ones within ourselves componded by grief and loss and pain...dividing walls functional and physical all over the world between races, religion, societies, resources and nationalities...may Jerusalem be a city of faith and peace radiating to the end of the earth....may 2018 allow us all the privilege to know how to be peacemakers.
Follow the star
O little town of Bethlehem
Graffiti quoting MLK 'tear out of this mountain of despair a stone of hope'
September saw the amalgamation of various Cairdeas events in south-east Scotland to create a jam-packed weekend of exciting activities, discussions and updates: Cairdeas Ops Director Dan Knights shares some highlights...
The weekend kicked off on Saturday 16th September with a special meeting of our trustee board. Due to the team being spread across the UK, it was a welcome opportunity to connect face to face, but also a chance to turn our minds to the broader strategy of Cairdeas. Building on the excellent work that was put into our previous strategic plan, we are now in the process of updating this and laying out our vision for the few years to come – watch this space for more updates!
That very afternoon, we gathered some of our faithful supporters at our annual Gathering in Kirkintilloch Baptist Church. It was a real pleasure to link up with old friends and new friends, and to hear from Mhoira and recently returned volunteer Alice about the ongoing exciting work in Uganda and elsewhere, and also a chance to kick off this year’s purple party season with a fantastic array of purple edible goodies, with purple outfits to match!
Two days later saw the inaugural meeting of the Cairdeas Faculty – an initiative where we are looking to formalise and develop the way we work with those numerous experts in global palliative care who have provided mentorship, training and other support through Cairdeas in the past, or are interested to do so in the future. The experience in the room was immense and we had some very rich discussions about the challenges, priorities and opportunities for this group going forward. We are hoping to offer opportunities to use people’s talents both through short term international trips, but also through the development of resources from the UK which will support our work internationally. Again, watch this space for more details and do get in touch with me on firstname.lastname@example.org if you would be interested in getting involved with this group.
These meetings were all planned to also coincide with the Edinburgh Global Palliative Care Day, which is coordinated jointly between Cairdeas, the University of Edinburgh, and other partners, and has become an annual diary fixture and great chance to build relationships and network with others sharing a passion for developing palliative care globally. This year the focus was on universal health coverage and leadership, with stimulating talks ranging from Dr Jane Bates’ insights into her PhD work looking at palliative care as a means to alleviating poverty, to our own Mhoira Leng sharing on the relevance of palliative care in humanitarian crises, to a new way of sparking discussion on actions and ways forward in the form of an ideas café! Our friend and colleague Julia Downing has reported on this event in an eHospice blog, so do check it out for more details!
From a personal perspective, this first run of Cairdeas’ key meetings with me in the Ops Director role was a great chance to meet with colleagues face to face. Primarily working from home and only communicating with people via the internet can be pretty isolating, so the buzz of bringing so much enthusiasm together into one place was palpable for me! It’s particularly exciting to see Cairdeas taking an active role in contributing to the coordination of bigger events such as the Edinburgh Global Day, and to see our much-discussed plans for the Cairdeas Faculty beginning to come to fruition!
It was also great to see people decked out in their purple party-wear and raising awareness of what Cairdeas means to them - and various of you have followed in their footsteps with your own #cairdeaspurpleparty! If you didn't get a chance to run one this year, keep your eyes peeled for next year's campaign!
Cairdeas Gathering 2017
What does Cairdeas represent for me?
Cairdeas Faculty is born
Momentum gathering for global palliative care at our annual meeting
Many of our Uganda MPCU colleagues were able to particiate in this groundbreaking conference with some supported by Cairdeas scholarships and an opportunity to share an information stall with our partners the Global Health Academy, Edinburgh and the International Children's Palliative Care Network. Mwazi Bautli is one of our longeststanding members of MPCU and has recently completed the nurse leadership fellowship. She was involved in the planning of the conference as well as participating and shares her experiencce in this blog.
This was a joint international conference of cancer and palliative care. This was an exciting undertaking in which a government institution was working with a non-government institution. It was the 7th biennial Palliative Care Association of Uganda (PCAU) conference and Uganda Cancer Institute (UCI) celebrating 50 years of cancer care since its establishment. It was planned for 600 delegates but 500 delegates attended.This was a timely reflection on cancer in Uganda and palliative care together as the burden of cancer is increasing, this is so because most of our patients report late for treatment or are diagnosed in the late stages of their illness making palliative treatment and care the only option in their management in our resource limited setting. The theme of the conference was “United against cancer: Prevention to end of life care”. This was a two day meeting held on 24th and 25th August at Resort beach Munyonyo. It was preceded by a preconference symposium on breast cancer care. The first day ended with a grand Gala dinner for UCI @50 where several recognition awards were given to individuals who have contributed to both cancer care and palliative care including our very own Prof Julia.
I was privileged to be a member of the organising committee and more specifically on the scientific committee which comprised of 20 members drawn from UCI and other organisations providing care to patients with life limiting illnesses including MPCU. I was the secretary to this committee and i was responsible for taking record of the proceedings of all the deliberations of the meetings. This was very enriching as it gave me the opportunity to utilise different skills to be able to keep track of all the information. The same committee was not only tasked with reviewing the abstracts but also developing the conference program. This undertaking focused on evidence based practice as well as new innovations in cancer treatment and palliative care. A total of 118 abstracts were received and out of these 50 were accepted for oral presentation and out of these 29 were in cooperated into the conference program. While developing the program, names of prominent health care personalities kept coming up and I was eagerly waiting for the conference to happen so that I could interface with some of them. At the same conference, I was among the presenters on the track of Service provision. During this time I not only represented MPCU in general but also the nurse leadership fellows as the work I presented on the prospective study conducted to evaluate nurse opioid prescribers in Uganda.
While developing the conference program, this was not only exciting but it was also challenging as some members were involved in this assignment for the very first time. A criteria was developed to aide in the selection of the abstracts for both poster and oral presentations. During the conference I was able to interact with high profile persons both locally and internationally. During the 2nd day of the conference I celebrated my 54th birthday in a special way with more than 400 delegates singing for me. This was very exciting and I look forward to many more collaborative conferences.
This particular conference was very beneficial to me as an individual as it emphasised the importance of collaboration and networking. Further everyone has the capacity to significantly contribute to organisation of any activity regardless of their position and role in the healthcare system. This has further improved my confidence and communication skills both written and oral. This has also helped me make new friends. I have come to realise that when we come together much can be achieved through sharing of our expertise.'
All the conference presentations and posters will be available on our resources section.
PCAU and UCI joint logos
Mwazi Batuli.happy birthday
Ivan, Toko and Mhoira with Sanyu team volunteering poster
It was great to have Dan (our operations director) and Felicity Knights and also Christine Whitehouse from Uganda Cancer Trust visit us in Uganda. They brought such a sense of energy and encouragement and helped to give us a real impetus for our Cairdeas work. John Saxton, a pre-med student from the USA was also visiting us and is preparing a video we can share soon.
'My name is Felicity Knights and I am married to Dan (current Operations Director). Like Dan, I’m also a junior doctor, and together we’ve been friends of Cairdeas for more than five years and enjoyed sharing the journey. However, in July I had my first chance to actually meet the MPCU team and I loved it!
For me, one of the most exciting new developments is the new ‘Sanyu’ team that is supporting MPCU – Sanyu means joy. This team are newly trained volunteers from Kampala’s Lugogo Baptist Church, who are going to act as a community-based support team for palliative patients as they are discharged. MPCU’s volunteers are already an essential part of the team: giving practical, psychosocial, spiritual and practical support to patients and their families in Mulago, Kiruddu and Kawempe hospitals. The Sanyu team will help to extend care and pastoral and social support for patients holistically in their home setting.
Joy with the pigs....It was a highlight of the trip to visit the new pig farm project which has been initiated to try to provide a sustainable source of funds for the Sanyu team and the wider volunteer team. The project aims to breed and sell pigs, and all of the profits will go towards supporting the volunteer pprogramem as well as build capacity for incoem generation. I’m a trustee of another charity working in Uganda, Afrinspire http://www.afrinspire.org.uk/ who have offered some advice on this piggery, and in this role I have had the opportunity to visit a number of different agricultural and farming projects. So one of the things that really struck me about this particular farm was the dedication of the Farm’s caretaker (Senga), and MPCU volunteer, Toko, who has been overseeing the implementation of the project. Both were clearly determined to make the piggery a success, and believed strongly in the value of the project to support the Sanyu team in the work they are doing for MPCU. Senga shared with us that she saw caring for the pigs as God’s work, and that her faith was the thing that was driving all her actions.
Piggeries are actually one of the most rapidly-growing sectors of farming in Uganda at the moment, but setting one up is not without its trials! Unfortunately, the team have found themselves confronted with a number of challenges common to this sort of project: difficulties in finding land to farm, fluctuating prices of feed and breeding stock (in part due to Ugandan drought), and things just taking a lot longer to get started than originally hoped!
But it was wonderful to see where they have got to, and to discuss plans to take things to the next stage. One of the two piggery buildings was fully constructed, and we were able to see the four pigs inside: one boar and three sows, two of whom are currently pregnant, so it won’t be long till the first piglets come along! The next stages are likely to include completing the second building, purchasing some more sows, and starting growing food on the nearby land to help protect the project against the fluctuating food costs.
So it was a joy to learn about the Sanyu team and their piggery, and I’m very much looking forward to re-visiting and seeing the next stages come into fruition!'
Thanks Toko, Ivan, Grace and the whole volunteer and pig project team. We are doing this to enable us to care for more people in need and you already contribute so much.
Thanks also to UCT http://www.ugandacancer.org.uk/ who have been our main funder for this project. In particular Christine Whitehouse, has been such an amazing support for MPCU and for our Pig project in particular. Her business acumen has been invaluable with ongoing committment as well as the encouragment of visits from Micheal and Liz Minton who are trustees of UCT. Thanks...and looking forward to continue to being partners!!
You can get involved in supporting this project too by donating online through the Cairdeas website www.cairdeas.org.uk. Watch up for more updates and we will be offereing a chance to sponsor / buy your own pig soon. Some are already named...spot Catriona
International colleagues joining Sanyu team
Growing, happy pigs ?Catriona
Wonderful, faithful Senga
4 and counting
Toko, Ronald and Christine; thanks UCT for all your support
Thanks to Dr David Fearon who leads Cairdeas Sahara and has given us this update on an innovative and creative project in Mauritania which extends palliative care with an emphasis on community understanding, rural development and poverty alleviation.
'I am delighted to report the completion of a 12 month capacity building project in Mauritania. These activities were sponsored by Johnson & Johnson and managed by the Tropical Health and Education Trust (THET). The highlight for me was the multidisciplinary and international collaboration. Visitors represented France, Senegal, Switzerland, Uganda, UK and Sudan. It was especially nice to be able to host the country’s first palliative care training in Arabic during the visit by Dr Nahla Gafer and Dr Mohja Khair, Cairdeas friends from Sudan. I was relieved that their dialect of Arabic was easily understood, and it was wonderful how they identified so many similarities between these two countries of the Sahel, both in the environment and culture. I think they were jealous of our wonderful beaches!
Overall we training 75 health care workers from all over the country in the foundations of palliative care, and we visited nine of these participants for mentoring in their rural work setting. To gve an example one nurse said 'I was caring for an elderly man with cardiac failure. He had multiple pressure sores and dirty sheets. He was depressed. I dressed the pressure sores and showed the family how to do the same, in employing what he learnt during the training. I could see how I made a positive change in this man’s life and that of his family. The patient remained well until his death. I never say ‘there is nothing more that can be done’ anymore.”
At the moment, I am working with a French anthropologist on writing up the research which ran alongside the project. Unfortunately this means reading and rereading through the French transcripts of nine focus group meetings and 31 individual interviews. Eventually, we plan to publish two articles from this research. The first will be an anthropological reflection on the training and the effects of the training, and the second a discussion on the cultural ideas of death, dying and end of life care. I am already finding some good insights into how the concept of palliative care is viewed locally. For example, the definition of palliative care is centred around the idea of ‘life-limiting illness’ however this is a new concept for many Mauritanians, including health care workers. As one imam said : ‘it is not the illness which causes death, and it is not health which causes life’. In Mauritania, people believe that it is only God who is in control of life, health and death. A doctor or nurse who talks of an incurable disease may be considered as putting themselves in the position of God, or they may just not be aware of the available cure. Another aspect is that life is thought of as fragile and that most people have experienced suddenly losing a healthy member of their family, even while a severely ill family member makes a full recovery. Whilst we may think that these beliefs may lead to a fatalistic acceptance, in practice people feel a great burden to pursue any possible cure, whether through modern health care or traditional. At times this leads the family into debt as they continue their search for a cure.'
The THET website has also featured this project http://community.businessfightspoverty.org/profiles/blogs/john-paul-creating-responsive-not-prescriptive-global-health. This shows how we can partner to make a real difference...many thanks to all our Mauritanian and international partners and to Johnson & Johnson and THET for their grant..
Presenting the certificates
Smiles and certificates
Great team work as trainers
Sudan vs Mauritania football match..an unexpected addition to the trip
The EAPC World Congress 18th to 20th May in Madrid was a great event encompassing cutting edge education and research, networking, social interaction, meeting and renewing colleagues and friends, presenting our work and being inspired. It was so good that Dr Jack Turyahikayo was awarded an IAHPC Travelling Fellowship to attend and he shares more below...along with Dr Lucy Robinson who volunteered with us last year. We were presenting work which included a reveiw of our research capacity and I will write more of this in another blog.
All our posters and presentatons will be in our website folder under EAPC. We were very honoured to accept an award for Leadership led by Julia Downing and with Liz Grant which and recognised the amazing Leadership Fellowship for Nurses completed recently with the University of Edinburgh, Makerere University and PCAU. Great to also see one of our Cairdeas Trustees ; Hamilton Inbadas and see Dr Lungagowda from Kidwai in Banaglore accept a pprze. So good to share with our Malawi friends (Jane Bates) and Sudanese (led by Dr Nahla Gafer). We shared in the launch of the Atlas for Palliative Care in the Middle East and Africa; again these will be available in our Resources section very soon. It was so good to see the interest in refugee and migrant health and many many new ideas going forward.
Jack says: 'The EAPC congress 2017 will always remain such a memorable one for me. This was the biggest congress that I have attended with over 2000 participants from various countries. Presenting work on “Outcomes of care among patients referred for specialist palliative care in Mulago hospital” allowed me interact, share knowledge and practices with the greatest researchers in palliative care. I enjoyed the numerous poster and oral presentations which immensely positively impacted my research knowledge and skills. Many palliative care researchers were pleased with the work presented and stimulated ideas to better my PhD research that I intend to undertake. I was inspired to have more impressive work at the next EAPC congress in Berlin. It was such a pleasure that as a team, three of our posters presented emerged among the best in the various categories.
Touring Madrid City showed me the wonders of living in Madrid. The late dinning night life with thousands of people walking and touring was such an interesting experience for me. The Santiago Bernabeu stadium that I have always watched on TV has an amazing history in club football. It was joyous to visit this stadium seeing several trophies and accolades won by the greatest soccer players in club football. I also posed and lifted the most recent Champions league trophy won by Real Madrid. I particularly enjoyed Spanish food served as Tapas. The sea foods including squid, prawns, octopus and cray fish are all tasty dishes that left me mesmerized and wondering if I could find similar dishes back in Uganda.
Barcelona city was such a lovely and memorable experience for me too. The amazing architectural designs of the buildings were such a wonder to see. The Basilica Sagrada Familia by Gaudi marked by artistic sculptures of the Holy Family was the most beautiful cathedral I have seen. Park Guell overlying Barcelona city allows for an awesome view of most of the city. There was also a lot to learn about Gaudi`s work from this same place. The long walk along the La Rambla Street viewing many touristic places and spending time at the Barcelona beach was historical for me. I will always treasure these moments.
I also spent time at the University of Barcelona and learnt so much about its history. Visiting the Institute Catalagia Oncologia(ICO) that provides cancer care allowed me witness firsthand how patients with cancer are managed. I was able to see how chemotherapy is reconstituted and packaged by two robots supported by pharmacy technicians. I visited the palliative care team in this hospital which provides highly specialized services to patients and was pleased to see how it efficiently provides care to over 1000 patients a year. I easily appreciated the different contexts in which we all provide the much needed care to our patients.
I appreciate everyone who made it possible for me to have such a wonderful and unforgettable experience at the EAPC congress in Spain. Special mention goes to Dr Mhoira Leng who ensured that my stay in Spain was historical. I pray that God continues to provide the resources needed to thrust palliative care forward.'
Lucy adds her perspective: 'I am a doctor from the UK who volunteered with Cairdeas last summer at Makerere Palliative Care Unit (MPCU) in Kampala, Uganda. It was a challenging but enriching experience for myself and my partner John to give up our comfortable lives in Newcastle and travel to Africa. It really changed the way we look at life and work and we had some great experiences that we will remember for ever and met many inspiring people.
As part of this placement, myself and another volunteer, Dr Bex Cordner, undertook a project into research capacity building with the expert supervision and guidance of Dr Mhoira Leng, the Medical Director of Cairdeas, and her colleagues Dr Liz Namukwaya, Professor Scott Murray, Dr Liz Grant and Professor Julia Downing. Since MPCU was founded they have included research and evidence based practice as a core part of their academic Palliative Care Unit and have promoted a culture of research where everyone, from doctors to volunteers are encouraged to take part. This research provides evidence with which to deliver high quality Palliative Care in this setting and also helps the Unit to both achieve its strategic plan and measure its outcomes.
Our project, which I presented at EAPC in Madrid aimed to evaluate and measure the outcomes of this research culture and research capacity building through training. The study showed excellent results, with a large number of MPCU abstracts being presented at national and international conferences and positive outcomes from the research training delivered by MPCU.
The rest of the conference was incredibly interesting with a large amount of high quality studies into different aspects of Palliative Care being presented. It was a privilege to learn from these presentations and meet some of the people who are carrying out this important work. I found myself considering in more detail aspects of palliative care which I had not before, such as compassionate communities, managing frailty as part of palliative care and the health economics of this specialty.
Madrid itself was beautiful and Mhoira, Jack, Nasur (from Hospice Africa Uganda) and I spent a very enjoyable afternoon, after the conference, exploring. We marvelled at the stunning architecture, ordered way too many churros and accidentally joined a Spanish political demonstration!'
Many thanks to Cairdeas , IAHPC and THET for the financial support to allow us to attend and to all our wonderful colleagues who shared, inspired, laughed...but above all work for the development of palliative care, the relief of needless suffering and narrowing the health care inequity gap.
Warm welcome to EAPC 2017
Hamilton and our Indian colleagues with the prize winner Dr Lingagowda
African colleagues as the African Atlas is launched
Jack presenting his poster
Jack discovering seafood
Lucy presenting our work
Lucy and Jack and their proud mentor
Beauty in Sagrada Familia with Jack, Nahla and our Sudanese friends
Integrating palliative care into health systems is a global need and we are privileged to develop and evaluate models in a government hospital setting. We have pioneered the use of trained focal persons sometimes called link nurses (though they are not all nurses) who are trained and mentored to identify and manage palliative care problems at ward level. They cover areas such as surgical, burns unit, HIV, sickle cell clinics as well as oncology, gynaecology and medicine. We have evaluated and published this work and now extending it to 11 other settings here in Uganda but also in Rwanda and India.
A long time supporter and now new Trustee of Cairdeas visited and met many of our link nurses and shares her experience
'Ten Years on .... One afternoon in December 2006 whilst on holiday in South India, I sat listening to Mhoira and Dr Rajagopal explore ideas of how best to improve standards of palliative care in South India. Cairdeas was then in its infancy – a tiny charity with a global vision. Ten years later, I have just returned from a brief visit to Uganda where, from its base in Kampala, the work of Cairdeas now extends to Sudan, Mauritania and Gaza.
Highlights of my trip included meeting some of the enthusiastic and inspirational team based at Mulago Hospital – Loy who works in a paediatric ward where almost one hundred children are cared for sometimes by only two nurses – Josephine who although old enough to be retired, enthusiastically keeps working to train and mentor link nurses on the community training programme – Georgina who came into the hospital on her day off, just so that I could have some time hearing about her work – and these are only a few!
Behind the scenes is a committed group of professionals who administer, train, mentor, evaluate, audit, conduct evidence based research, all of which provides accountability and credibility to the work being done. I was conscious of the vast amount of time devoted to the on-going search for funding and the endless application forms which need to be completed. Travel is an integral part of any global project and I was very aware of the personal cost to those who live itinerant lives – attending conferences and training events, organising groups of representatives, arranging transport, estimating expenditure, ‘keeping the show on the road’, whilst still somehow finding the energy needed to inspire others and ‘grow’ the project.
The team of the link-nurse programme struck me as a group who work very hard . . . but also know how to play (could ‘the boss’ have anything to do with this?). There was lots of fun and laughter, combined with a sense of respecting and valuing each other which to me indicated their learning in palliative care has become integral to the people they now are. As one nurse said to me, ‘we are changed’. The experiences of the most vulnerable human beings have changed because the approach and attitude of those looking after them has changed – what a privilege to be in any way involved in such a process!
Thanks Joyce...Alice has also interviewed several nurses trained more recently as well as their mentor Florence and asked them about their experience.
'Hello, I’m called Florence. I have worked with the MPCU for seven years, but have been working in Palliative Care for seventeen years. I am now based in the medical wards at Kirrudu National Referral Hospital, seeing referrals in this 700 bed hospital, and also leading the Link Nurse programme. MPCU carried out a ‘needs assessment’ in 2011 that found that 45% of inpatients in our hospital had significant Palliative Care needs. Unfortunately, our team is limited in number and cannot see all of these patients individually. So we decided to train nurses on the wards, who are working more closely with the patients as ‘link nurses’. These are helping us by managing patients who have needs at level 1 [palliative care needs that can be met at ward level by all health and social care workers] and level 2 [palliative care needs that can be met at ward level by health and social care workers who have had additional training], offering them Palliative Care. They assess and manage the patients, but then alert their doctors and refer to us if the patient has more complex symptoms. Starting in Mulago Hospital it is now really helping here at Kirrudu Hospital, with nurses from outpatients on the first floor all the way to the dialysis unit on floor four being trained. Palliative Care is becoming integrated into practice on all our hospital wards.
We train each nurse through a process of teaching and mentoring, which is really enjoyable. We put them in class where they are taught by different members of the MPCU team, then they brainstorm how this works in their clinical practice and then a two day placement with us, where I work with them and take them through the practical part, demonstrating to them how to give morphine and assess a patient. We teach the basics in palliative care including: how to do an assessment of a patient to find out their needs, how to break bad news, how to communicate with the patients and their families and how to care for the terminally ill. This helps them to care for the patients they see on the wards, often with cancer or non-communicable diseases. It’s having a really good impact. As one person, I can’t see all the patients in the 700 bed hospital. But now we have twenty trained nurses. So they are the clinicians who can offer Palliative Care alongside the ward doctors to those patients who have basic needs, but link those with more complex needs to the MPCU team. They are bridging the gap. For example, I was being asked to see patients on the burns unit who were struggling with pain management. Now they know that they before changing dressings, they must give morphine to minimise procedural pain and this means I can focus on managing the patients with more complex palliative care needs.'
Thank you Florence, keep up the good work. Alice then spoke to two of our link nurses to find out how doing the training has changed their practice.
Irene Nassuuna, is a nursing officer working in Kirrudu Hospital currently leading the team in the outpatient department. 'I first heard about Palliative Care ten years ago when I was working at Nsambya hospital. But I didn’t understand what a difference it made. I thought it was only for cancer patients and patients who were just about to die. But I saw sister Florence was interested in much more than just cancer patients and morphine and so I started asking her more questions about Palliative Care and the link nurse programme. I found a young patient on my ward with liver cancer, but who was in a lot of pain. Following my training I was able to spend time explaining to her about her disease and with the ward doctor, started her on morphine. We also counselled the relatives who required more input at which point we referred to the MPCU team. I felt much more confident in managing this patient. It is really important to have more nurses trained in Palliative Care as it changes the attitude of the nurses to patients, draws them closer to patients and helps them think holistically.'
Jane Bujonjo, is a senior nursing officer, in charge of level 6 wards, neurology, endocrine and haematology wards. 'I learned so many things! It changed my attitude so I can communicate better with the caretakers and offer more support. On the wards, it has brought me closer to patients as I work find out what their individual needs are. There is always something we can do.'
Original link nurse training group 2011
Josephine Kabahweza, our first link nurse mentor
Link nurses in Baptist Christian Hospital, Tezpur, India
Great to hear from Dr Alice Grey who is spending 6 months with the MPCU team in Kampala (note you can click on the link above and receive regular notifications of new blogs)
'Are you sure you're ready for Africa? It's a bit different to southeast London' My consultant asked me as I headed off from my last A+E shift. He was right, although the bustling city of Kampala does remind me of home, it also couldn't be more different. My name's Alice and I am a junior doctor from the UK. I am honoured to have the privilege of volunteering with the MPCU team at Mulago Hospital for 6 months before starting the next stage of my UK training that will take me closer towards become a Palliative Care specialist. As I am almost halfway through my time here, I thought I'd share some of my reflection on this incredible experience.
Something I have been really struck by is how comfortable clinicians and patients are here at discussing spirituality. The majority of the population would describe themselves as Christians, but there are a number of other religions represented here, including 14% of the population being Muslim. I have seen the MPCU model holistic care beautifully, addressing each patient's spiritual needs just as easily as they would address physical or social needs. They appear to be just as comfortable asking questions about a patient's faith as they are asking them about their pain. I can't say that this is something that I have seen modelled anywhere near as well in the UK and I am learning so much from the team. It does help that spirituality is an integral part of the culture and community life, as evidenced by the fact that all teaching sessions and meetings will start with a verse or two from a hymn (depending on how many verses we can remember) and a prayer. It doesn't feel divisive, with a mixture of people from different faiths in our team taking it in turns to lead these times. I personally enjoy the peace and hope that this seems to bring into an environment that can feel very chaotic and sometimes hopeless.
However, I've also seen the darker side of 'religion' here. I have noticed that many patients will present in the late stages of disease. This is often because they have first been to a traditional healer healer, be it a 'herbalist', 'witch doctor' or even 'church pastor', who has dissuaded them from accepting 'western medicine' and instead offered alternative remedies or prayers in exchange for large sums of money. Being a Christian myself, I understand the importance of prayer to patients. However, I have really struggled with the scepticism of many patients to Western medicine and instead often unquestioning trust in other treatment options. The MPCU team handle these cultural difficulties with great patience. They work hard to build relationships and trust with their patients, so that the patients are then able to comfortably engage with the excellent palliative care offered by the team.
I hope I can take what I have learned from the team here and use it in my own clinical practice. Yes, spirituality is much more obvious in Uganda. ('God's plan supermarket' is my local UHT milk/banana provider here. I think you'll agree, a much more interesting name than the 'Tesco local' down my road in the UK) However, the spiritual needs of patients in the UK are just as significant as in Uganda and there's so much we can learn from the way they are approached and managed by the team here.
Now, I am no 'fashionista', but I think there's time for one more more light-hearted reflection on Uganda-style hospital attire. The concept of dignity-stripping, paper thin hospital gowns found in NHS hospitals do not exist in Uganda. This means that patients will bring their own clothes to wear in hospital...and I had not realised what a difference this would make to my perception of them. Although NHS-prescription gowns are practical (washable, quick to remove, oh so flattering) and ensure that no patient looks superior to another (the business man looks exactly the same as the homeless person who has a substance problem). Yet it means often all I see on a busy ward round is another anonymous 'patient' in front of me, rather than an individual. Here, however, due to the hospital being unable to provide gowns, patients will dress in what they would wear at home. This helps you see so much about a patient's background and social circumstances, but you also get a little glimpse of their character and, on occasion, their breakfast. Women will even go as far as to wear a 'gomesi' . I've just been surprised by how differently I subsequently see the patient. They're no longer just another 'patient'. They're the lady who looks beautiful in her blue and gold gomesi!
Thank you so much to the MPCU team and Cairdeas for not only giving me this opportunity, but helping me to feel so welcome and at home in a culture from which I have so much to learn.
Busy traffic in Kampala definitely trumps London
Teaching the basics of palliative care to our Sanyu team from Lugogo Babptist church
Always holistic discussions on ward rounds; physical, social, psychological and spiritual
The colours of the patients clothes really brightens up the wards..and how about that smile!
Lugogo BC celebrations over Easter
Our MPCU team showing off their gomesi on the way to Grace's weding
Sunrise over Queen Elizabeth National Park. I think I've fallen in love with Uganda
We are delighted to have offered regular travel scholarships for partners who are presenting work at the annual Indian palliative care conference and this year we supported Hamilton Inbadas ( Cairdeas Trustee) who was delivering a plenary and Dr Elizabeth Namukwaya who is the clinical head at the Makerere Pallaitive Care Unit alomg with Dr Mhoira Leng. These cross exchange and south to south interacations are so rich and Cairdeas is keen to develop this further. The opportunity for sharing, learning, being inspired and forming collaborations for the future is so important. Dr Liz shares her experience as a first time Indian visitor, being mentored in Indian dress and culture and of the conference where she was presenting work from her excellent PhD and from MPCU. Please find PDFs of the presentations including Dr Liz under our resources section and this includes several posters and 2 sessions on refugees needs in palliative care and our work with Gaza colleagues.
'On the 6th of February 2017 I had my first travel to India and it was the first time to travel by Etihad airlines. I was going for the IAPCON conference in Coimbatore. I travelled with Dr.Mhoira and to her India is another home this was very helpful because gave me some lessons on Indian dressing and food along the way and introduced me to some of the culture there, including the meaning of the head shaking. Even with this information I did not really know what to expect. We arrived at Coimbatore very early in the morning the next day and found the conference organisers had prepared transport for us. As we travelled to our hotel what stood out for me was the hooting. In Uganda people hoot but in India it is at another level but whereas in Uganda it may be offensive in India it is acceptable and a form of communication letting the other driver know you are coming right behind him or overtaking him and so I got used to this very quickly. Once at the hotel we were served with a delicious breakfast and I had my first taste of many India breakfast foods. I was amazed at the many number of ways rice can be processed and cooked. Although initially the foods were spicy for me there were delicious and I soon accepted them (though took my antacids regularly).
We were booked in the lovely Residency Hotel and the staff there were just excellent; the best I have seen in all the hotels I have ever gone too. They were extremely polite and always willing to help all the time. The rooms were very well cleaned every day and internet access was great.
Another reason I was so glad to travel with Mhoira was that she knew the best shopping places in India with good quality clothing and good prices and she took me to Fab India and after a few hours there, I was ready to attend the conference dressed in a culturally appropriately way. We used an auto vehicle and it was a fun ride. Mhoira introduced me to her family in India, lovely and great people whom I was so honoured to meet. I was very impressed by Mhoira’s ability to recall the names of the hundreds of the people at the conference some of whom she had met sometime back.
The conference was attended with many other friends from the UK, South Africa and Australia and it was great to see them all again. Together with friends we had a tour of Coimbatore and Ooty. We so enjoyed the breath taking scenes up on the mountain in Ooty and appreciated the greatness and wisdom of God through all the variety and beauty of nature, my heart was singing ‘How great Thou art’. We saw a variety of the Indian living conditions ranging from posh areas to poor areas. There was so much similarity between the living conditions there and those of many areas in Uganda. We also saw the great art on their temples and learned a bit about their religions. I was impressed in Ooty by the government’s efforts in nature, having gardens for tourism and study purposes. Another highlight of our tours was the car museum in Coimbatore recommnede by Dr Balaji, the conference organiser and local resident; it was very impressive.
The conference was very well organised, time management was good most of the time and the people were really very friendly. I really liked it that the conference included people from so many disciplines in medicine and nursing and I learned a lot from specialists from these disciplines and it gave me research ideas. I was amused that most people had not seen a black African person and often asked me where I came from, stared at me and asked to have photos with me, even children. The day I had most photos with people who did not know me was the day I wore a saree, I caught many people looking at me and showing others that I was in a saree. I often see this happen to white people in Uganda and now I also got to experience this myself. For me it was not offensive as they were genuinely not used to seeing someone like me and with my braided hair style which was also a common question on how I did it. I enjoyed the different foods served at the conference and at the hotel especially chicken biryani. I also enjoyed the entertainment from the children with disabilities and the music group on the last evening.
At this conference, I had the opportunity to present in 3 sessions. The first presentation was part of a qualitative research workshop where I presented an example of how qualitative research can be done in palliative care using my PhD experience and the title of the presentation was: ‘The experience of living and Dying with Heart failure in Uganda’. My other 2 presentations were in the free communications sessions and I presented another aspect of my research titled: ‘The multidimensional experiences and needs of Ugandan patients with heart failure’. The third presentation that I did on behalf of my colleague Dr. Jack Turyahikayo who was unable to attend the conference and it was titled: ‘Outcomes of care among patients supported by specialist palliative care services in Mulago hospital’. I thank the conference organisers for the opportunity to share those presentations. I had great feedback from the audience being able to present created opportunities for future collaboration and networking from the audience.
I was priviledged to listen to the work of some of the leading people in palliative care in India and in the world, whose work I had read and it was good to attach faces to their names. I was very happy to be introduced to them by Dr. Mhoira who is a friend to all of them and to get their contacts and I hope this will open doors for collaborations in the future.
I was very impressed with the posters and the conference program that was very inclusive of many aspects and dimensions of palliative care. The topics were very interesting that it was difficult to choose where to go because many times these sessions were running in parallel. The presentations were of high quality and evoked rich discussions. It was very inspiring and encouraging to hear from the chief guest and guest of honor, their personal and their relatives’ experiences of living with chronic illnesses and how they coped and experienced growth with these experiences. It was also motivating to hear their positive experiences of receiving palliative care. Working with dying patients and suffering people most of the time sometimes makes you wonder if your personal concept of making a difference in people’s lives is the same as that for patients and their families, because most times you seldom get feedback, therefore hearing these testimonies at the conference was very encouraging to me as a practitioner to continue with this work of palliative care.
The presentations on palliative care for vulnerable populations entitled ‘Hidden lives , hidden patients’ were eye-opening and made me reflect more on how we should extend our care to these groups of people in my country. Another thing that stood out for me was how specialists from multiple disciplines have been involved in palliative care in India, there were presentations made by neurologists, urologists, radiologists, physiotherapists, psychiatrists, occupational therapists, psychologists etc. This was very impressive and I learned a lot from these specialists even in these few sessions. I realized this is a great opportunity for mutual learning for palliative care specialists and other specialists. Although we have multidisciplinary meetings with oncologists in Uganda this is not so common for other disciplines and and I hope to engage these other specialists in Mulago hospital so that we engage in multidisciplinary meetings which may foster joint research and conferences in the future.
I thank Mhoira and Cairdeas for the opportunity and I hope that one day I shall go back to see more of this country.'
Arulmigu Patteeswarar Temple in Coimbatore
Tea plantations in Ooty
Liz in saree...sorry photo not aligned!
Liz with Julia Downing, Mhoira Leng and Brett Sutton
Mhoira with our poster on the impact of the MPCU research strategy
Hamilton Inbadas; Cairdeas Trustee presenting a great plenary on 'Philosophical and cultural situatedness of spirituality in palliative care.'
Dr Savita from EHA giving such a moving talk about transgender issues and palliative care
Dr Balaji (conference organiser) and our good friend Dr Chitra Venkateswaran who was such a great scientific chairperson.
A few weeks ago Dr Elizabeth Swain, Trustee of Cairdeas and experienced palliative care and primary care clinician, was invited to attend an event at the Scottish Parliament and lend her signature to an important document highlighting the need for palliative care for children. She shares the experience and encourages us to sign up!
'There are a few hoops to jump before one can host an event at the Scottish parliament and one of them is to have the sponsorship of an MSP. EMMS (Edinburgh Medical Missions Society) had just that, with Andy Wightman MSP for Lothian giving his support. He gave this maybe for two main reasons –firstly EMMS is a very well respected Edinburgh based Christian organisation and this is their 175th anniversary year and secondly they are promoting the The Religions Of The World Charter For Children's Palliative Care which has been drawn up by the Maruzza Foundation, another well respected organisation based in Rome, which has the backing of Pope Francis.
So- hey presto, here we were in the Scottish Parliament on the evening of 8th February. I sat between the Moderator of the Church of Scotland and the Leader of the Mothers’ Union and just in front was a member of the Shia Muslim community. Silvia Lefebvre D’Ovidio, a Trustee of the Maruzza Foundation, was there is person to present the charter. This is a universal declaration by all faiths that children's palliative care provides the best solutions for all children and young people affected by life-threatening and life-limiting disease and, further, that access to palliative care services should be a right.
The Religions of the World Charter for Children's Palliative Care is a ground breaking initiative. Its purpose is to dismantle the barriers which prevent over 20 million children worldwide affected by serious life-limiting illnesses from receiving care that is appropriate to their age and disease. Religions have global reach and, due to their broadly-recognized moral authority, can provide fundamental support for children's palliative care provisions by:
affirming that all children with serious illness should have guaranteed access to palliative care
confirming that alleviating pain is a moral and religious obligation
recommending to political leaders and policy makers that children's palliative care should be integrated into every national healthcare system
giving strength to the movement for the global availability of children's palliative care through the involvement and endorsements of all religious, faith, and community leaders.
The Charter was first drafted at the Vatican by representatives of the main world’s religions, leading paediatric palliative care specialists, human rights experts and young patients and their families. Scotland, with its global reputation as a leader in palliative care advocacy, now has the opportunity to get behind this Charter and speak up for the 20 million children across the world affected by life- limiting illness. It is imperative that all these children and their families are guaranteed the right to access appropriate care that encompasses emotional and spiritual support.
After several moving and helpful presentations the delegates signed the charter in hard copy but also on line and you too can do this. Follow this link http://religionsworldcharter.maruzza.org'
Thanks Elizabeth for representing us and to EMMS for organising this important event.
If you want to read more about EMMS work please look at their website; you might also have seen tweiir ffanstiics films form Nepal in STV. Ihttp://www.emms.org/about-emms/the-news/stv-in-nepal/ ITo find out more about palliative care needs in children worlwide please look at the International Children's Palliative Care Network website http://www.icpcn.org/ which is now chaired by Prof Julia Downing and doing such a great job internationally.
Scottish parliament building
Charter and original signatures
Dr Elizabeth Swain signing on behalf of CairdeasIPCT
Hidden lives and hidden patients was the title of an excellent session at the recent IAPCON 2017. (see presentation 'Refugees' in resources section 'IAPCON 2017') I want to reflect a little on palliative care in one of the most vulnerable populations..... those affected and living in the midst of complex humanitarian situations. These includes natural disasters such as the 2014-2016 ebola epidemic in West Africa or the 2016 earthquake in Nepal where I am currently visiting but also the huge needs of those affected by conflict.
In these complex situations the rural areas are often most affected where health care is already a challenge. In addition the understandable focus on urgent care may mean that those living with chronic disease end of life care are overlooked and under resourced. More than at any previous time in history we are seeing huge movements of people forced, mainly because of conflict, to flee their homes. UNHCR estimates there are 65.3 million forcibly displaced people in our world with 21.3 million refugees, 10 million people who are stateless and only 107,100 re-setttled. While we hear so much about the numbers taking huge risks to get to Europe the majority of displaced persons stay in their core country or are hosted in nearby countries such as Turkey, Lebanon and Jordan. Uganda is experiencing a significant increase in refugees from South Sudan and I will write about this another time.
This is one of the major challenges of our age...how will we respond to this need? Will we be only focused on our own borders and back yard? Will we act as global citizens to defend rights, protect the vulnerable, offer shared compassion and be peacemakers?
Palliative care is one avenue for us to defend and protect this shared humanity. Let me share a little more about palliative care in one of the most complex and longstanding humanitarian situations..the Occupied Palestine Territories. The ongoing conflict and unresolved land issues result in huge inequalities, lack of access to basic necessities of living, lack of free movement and significant challenges with health care. A recent UN report describes this de-development and warns it might eb cecoem uninhabitable by 2020. In Gaza rising levels of chronic disease are accompanied by chronic stress and for many a sense of hopelessness. I have been privileged to visit Gaza on 2 occasions meeting amazing colleagues working to improve health care and in particular pain and palliative care. The recently formed palliative care steering group led by Dr Khamis Elessi has wide representation including WHO, academic institutions, UN , MOH and those delivering health services. They have identified some key priorities including education and training, access to essential medications. Policy needs and steps towards devoting rated service delivery and centres of teaching and excellence.UNRWA, the UN mandate, is seeking to address the need for chronic mental health within their family health teams. How do we approach palliative care when the overall needs seem so overwhelming and solutions few? One of the senior surgeons who has become world renowned for his surgical work in war conditions said 'our patients are in pain, we have no choice but to act'
The Islamic University of Gaza is seeking to integrate palliative care competencies into their curriculum and weclomed our partnership' starting with the undergraduate medical curriculum. (see presentation 'Gaza undergdaruate education' in resources section 'IAPCON 2017' ) Using international frameworks and our Palliative Care Curriculum Toolkit alongside the leadership from Dr Anwar Alshaihkalil, undergradute dean and Dr Fadel Naim, dean at IUG we worked with their innovative curriculum. Our international team (Drs Tony Jefferis, Janet Gillet, Colin Cooper and Mhoira Leng; from University of Edinburgh, PRIME, Cairdeas) agreed the core competency domains for palliative care and supported the first implementation. We met enthusiastic and interested teaching fellows and students who actively participated in the learning including role plays and group work...even walking up and down stairs breathing through a straw..to help understand how our patients feel. We spent time in clinical teaching rounds with patients and families from the medical, paediatric, oncology wards and intensive care. One memorable encounter was with a patient who was explaining his cancer diagnosis to the students but his son kept popping his head round the curtain to say 'dont say that dad you will be fine!'. A perfect scenario to model communication and the importance of including family members
Let me share some of the learning impact and give our Gazan students a voice....'the course added to the clinical practice makes us feel the suffering of patients and how we can help them’....'patients cope better when we tell them the truth' ....'I have learned to add smile and life to days not just days to life' ....thank you for ,....'I can do many serious works and have fun at the same time'....'we should never say there is never nothing we can do'......
It was a pleasure to have Jared and Bex Cordner working with us through Cairdeas in MPCU, Kampala. They contributed with expertise, skill but also willingness to learn, building relationship and embracing the challenges and joys of life in Uganda. Jared gives us a very interesting reflection from his business perpsective. Cairdeas can find it hard to share with you the need to build capacity rather then fundraise for more concrete projects so thanks to Jared for this very helpful view on our partnership with MPCU but also the fundamental principle by which Cairdeas seeks to work globally to increase acccess to palliative care for all.
'I’m not a medic. In fact that statement goes nowhere near far enough to explain my obscene lack of knowledge in relation to anything medical, despite being married to a Doctor (Bex). I come from a business background and so when Bex and I decided to take some time off from our normal jobs to travel to Uganda to work with Cairdeas I viewed the whole thing through different lens than she did.
Firstly, when I read that Cairdeas seeks to ‘promote and facilitate the provision of high quality palliative care in the developing world where such care is limited’, my finance brain summarised this as ‘making investments, not creating expenditure’. Working in an investment bank at the time I felt comfortable that I understood that world. Now, having almost finished our 4 months here in Kampala I find myself reflecting on the investment Cairdeas is making in Palliative Care in Uganda. I’ll summarise my thoughts using some standard investment appraisal techniques.
Capital Growth or Dividends
A central principal behind investing is that in repayment for your resources you seek either a dividend, or a growth in value. The investment that Cairdeas is making is focused on seeing growth, largely through capacity building within the palliative care teams across Uganda. I’ve seen that isn’t an easy process as it requires time, money, training and energy. All of these need to be utilised in developing appropriate skills in individuals, all of whom are different, as well as impacting practices. I believe that if we are to see true development in Uganda, then this is the approach which will deliver that.
Another key area that must be explored before you buy into any investment is that of the exit strategy, it is important to be able to walk away when the time is right. The capacity building approach which Cairdeas has adopted lends itself to a clear exit strategy as it increases self-sufficiency of the palliative care units across Uganda. It has been fascinating to observe how Mhoira has maximised the impact of Cairdeas, without fostering dependency. Personally, it has been a blessing to be able to offer whatever help I can, but my goal throughout was to ensure that I would never be needed again.
Finally, there is a level of ownership and responsibility attached to investing. An investor should ask themselves, “Am I proud to be supporting these activities”? The work which Cairdeas is investing in is something to be exceptionally proud of. Cairdeas helps meets the deepest physical, spiritual and psychosocial needs of vulnerable patients in Uganda through its development of palliative care staff, volunteers and programmes. Basic human needs are being met in a way which they may not have been 8 years ago, and Cairdeas (through their local partnership with MPCU) are largely responsible for that.
So there you have it. In the past 4 months of being on the ground in Uganda I’ve witnessed Cairdeas make wise investments and ensure growth without dependency, all towards making palliative care accessible by all.'
Jared helped us put together our Christmas appeal so not too late to invest; it can be a practical breeding pig or enaging with our capacity building through scholarships or supporting our pastoral care and social support through our volunteer programme. Please use our donate button on the websoite and then drop us an email to say what you gave so we can keep you updated and send a photo! Lastly, do you have skills to contribute to Cairdeas vision either in the UK or in Uganda or one of the other places we work. Please get in touch and keep up with our news through this website and facebook!!
First time for Jared in the southern hemisphere
Thanksgiving at church; giving pregnant rabbits who are now multiplying!
Historic events as the Cranes get through to the Africa cup first time in ?60years
Bex and Jared as part of the MPCU football team at the PCAU tournament to celebrate World Hospice and Palliative Care Day
Enjoying the beauty and diversity of Uganda; the 'Pearl of Africa'
Still time to contribute; click on our donate button
We thank you so much for your generous support over the years! Your contributions however small they may be make a lasting contribution to palliative care in Uganda!
Our appeal this year is to ask for your support towards services of a volunteer, buying a breeding pig and training for a palliative care nurse.
Support a volunteer
Volunteers are an integral part of the Palliative care service at MPCU, they give practical, psychosocial, spiritual and practical support to our patients and their families in Mulago and now Kiruddu and Kawempe hospitals. For £10 you can pay to facilitate the services of one of the volunteers for a week.
Ronald has worked with the MPCU volunteer team for 3 years now. He says; “I have dedicated my time, knowledge and skills in helping the terminally ill patients who are in too much pain and almost dying. I dedicate 3 days a week to offer psychosocial, spiritual and practical support to these patients. Still so many times I have worked with patients who have no carers and I have to offer much time in helping them with services like collecting medicines for the pharmacy, taking them for investigations like x-rays, scan and helping them with physical exercises if needed. I also work with service providers in the hospital such that I am able to link my patients to them in case they need those services. Again in some cases patients are discharged from the hospital and are referred other health facilities near their homes where they can continue with medication so I do follow up on such patients to ensure they continue taking their medication”
Donate a pig
We are also starting our new pig farm project so as to provide a sustainable source of funds for our pastoral and social support programme. This is an exciting new venture as we try to achieve sustainability. For £40 you can donate an adult breeding pig to help us kick start the project which will go on to provide the volunteer programme with long term funding.
Train a staff member
Building capacity within team members is vital if we are to see palliative care develop within Uganda. For £300 you can provide a scholarship for one month of a palliative care degree for a team member.
Esther received a five day link training in 2012 by the MPCU team and has since then been working on the surgical ward as a link nurse, giving generalist palliative care and referring complex cases to the MPCU team. In April this year she joined the MPCU team! Esther says “Before I had the training patients who were dying could be neglected as the staff thought they could do nothing for them. But since the teaching I realised there is much I can do for these patients. I can allow them to die in peace and though they were suffering they had a smile on their face because of the care they received. Since working with the team I have learned much more. Before on the ward most of the times I would have worked alone but now I work as a team who have much knowledge that I can learn. I learn how to council them, how to care for all patients with life-limiting illness. It has changed me. It has changed my attitude.”
Esther now needs to enrol for an advanced training in Palliative care so she can provide better service to her patients.
Please consider supporting by clicking on our support button and donating online https://cairdeas.org.uk/get-involved/donate or by cheque to
Cairdeas International Palliative Care Trust 15 Kings Cross Avenue Aberdeen. AB15 6FS. Drop us an email email@example.com so we can acknowledge your gift and also send you progress update and a photo!!
We have been privileged to welcome mentors to Uganda as part of a Nurse Leadership Development programme which is supported by a partnership led by the University of Edinburgh and Makerere University (Palliative Care Unit) and funded by UKaid (DFID) through THET. Berit came for several months and contributed to the life of the MPCU team as well as her specific mentees. Here she talks of her experience.
'The opportunity to work in a completely different environment came right at the end of my working life. I have worked as a specialist palliative care nurse in London since 1989 and have retired three times! On my retirement from the NHS I said that my dream was to work in Africa. I never thought the dream would become true.
But here I am in Kampala. It is certainly both a professional and personal challenge. At a personal level it is about daily living – shopping, travelling, risk taking, being in a minority, time keeping and just being here without my family. At a professional level there is a range of challenges, such as the balance between being supportive and paternalistic, adapting the UK knowledge and experience with so far only quite a superficial understanding of the Ugandan reality.
It would be easy to focus on the lack of resources, training needs, perceived inefficiencies and lack of planning. However, as we talk about shared learning in mentorship relationships I would like to reflect on the learning I can bring back to the UK. I will leave the personal learning aside in this blog. Maybe in my next blog?
I strongly feel UK nurses could learn a lot from the Uganda. I am so impressed with the knowledge and experience the specialist palliative care nurses have of research, presenting papers and posters. In the UK we often say we don’t get the time to do this, but it is clear that it is a question of priorities. As many specialist nurses in the UK feel that there is a lack of career progression this could be a way forward. The investment in staff training and support in palliative care at all levels is remarkable. You visit a small hospital far from Kampala. The palliative care office is the size of a cupboard and there are the palliative care training certificates of the staff on the wall!
The nurses also have a huge sense of pride in their work. One particular image comes to mind of a palliative care nurse in small hospital proudly showing us the locked wooden cupboard for the morphine. Their resilience to work with limited resources with patients who are very ill, far from hospitals is outstanding. As a visitor you think the presenting patient and his/her needs are overwhelming, but after a consultation with the palliative care nurse you realize that a lot can be done and you see the relief of the patient and the family. This could be prescription for morphine, information about the illness, support available at home.
Finally, and I never thought I would say this as a nurse without a faith, but the prayers and in particular, the singing at the beginning of a working day or meeting is powerful. It gives you time to reflect, focus and feel part of that particular group.
A big thank you to all the nurses, clinical officers, doctors and volunteers I have met in Uganda.'
Aicha is a nurse who works part-time in the palliative care project in Mauritania, West Africa. She visits patients in their homes, helps to train others and is a local advocate for palliative care. She also works as a dialysis nurse in the renal unit of the National Hospital. 'I have worked for Cairdeas Sahara, the Cairdeas project in Mauritania, for around one and a half years. I have learned a lot of things in this time and I now think of others as I have never done before. We, as a team, work hard to reduce the pain of patients and their families. It is a privilege to be present in people’s lives at the moments when they have need for palliative care. The relationships I have with my patients are more personal than ever before. I have learned how to relieve suffering of the patient and their family. I accompany the patients until the last moments of life, all the while striving to reduce their pain and comforting them in all ways possible. I have learned much about how to appropriately advise people to reduce them wasting their money on pointless acts concerning their health. We comfort them and teach them how to live with one another. We give a helping hand to the family when there is need. Before our involvement, they were isolated because of several factors - many of these reasons are because the others do not understand the illness and are frightened, or because of the nausea inducing smells. We re-establish the position of the patient in their family and community. This means to explain their condition according to what they want to know and in a way in which they can understand and accept. We try to teach the family how to cope in difficult situations, and sometimes just treating the smell of the wound can change their whole situation in the family.'
Mauritania is located where the Sahara desert meets the Atlantic ocean and it wasd a pirivlege to visist Dr Dave Fearon and the palliative care team earlier this year. It is a resource poor country and is four times the size of the UK, with a population of 3.5 million. As part of the partnership between Cairdeas International Palliative Care Trust and the Mauritanian association ‘ASSIDE’, a recent grant from THET has facilitated palliative care training events. Twenty-five health care workers travelled from the interior of the country to the capital; the furthest distance travelled was 680 miles. Ten of these participants were selected to stay for a second week to be trained as partners. The training was interactive, with a mix of short lectures, small group work, interactive activities, role play, video recording and playback of communication skills, and visiting actual palliative patients in their homes. Here is a quote from one of those traiend '‘Before the training I thought I was good at communicating with my patients, rating myself as perhaps 9 out of 10. After watching the video recording of my role play, I realised that I was really only functioning at around 4 out of 10.’
Great work being done and we will have more information and stories from Mauritania in the future including some fascinating anthropological studies. Check out the facebook page Cairdeas Sahara.
Over the summer I took the unusual decision with my girlfriend to travel to Uganda and volunteer. This was something Lucy had thought about for years but was new to me. I assumed IT skills weren’t in the skillset of a volunteer in Africa, Lucy’s medical training being more of the stereotypical CV. Nevertheless I was encouraged that IT skills would be of use to the Palliative care charity Cairdeas we were going to work with.
I spoke with my managers and received support to apply for a leave of absence and to enjoy my time in Uganda. We began saving and paying for inoculations in preparation for the 7 weeks in Africa.
We arrived in July and our first impressions were getting picked up at the airport and the chaotic drive to Kampala, I had never seen, and probably won’t see, traffic as bad as Kampala’s traffic. Any odd ideas like “giving way” or “queuing” are clearly not on the driving test here. We’d soon get used to it though and were driving Ugandan style to work most mornings. Cairdeas aims to build a Palliative Care capability in developing countries, this was a great thing to be part of as I felt the team was making a lasting difference rather than a stop gap solution.
I was mainly organising the relaunch of this website which had been down for a relaunch for over a year. I spent much of my time in the office at the hospital working on the website or helping the nurses with their smartphones or PowerPoint, but on my last day in the office asked one of the volunteer coordinators Ivan if I could join him on a walk around one of the cancer wards. In Uganda most personal care for patients in hospital is actually performed by a friend or family member of the patient, 24/7. Most of the attendants sleep on the floor of the ward or under the patient’s bed. Nurses work across large wards and spend much of their time assessing symptoms and providing medication. The volunteers are people from the community who want to help patients who may not have someone to attend for them or need help getting prescriptions. These volunteers were the most inspiring thing I saw whilst I was there, they did so much good by listening and comforting the patients. It was truly humbling to see their dedication.
The health system in Uganda is limited by the standards I was used too, there were some free drugs available to patients but only a limited selection and a lot of pressure is put on the patient and family to come up with large sums of money for treatments. These commitments to treatments could often bankrupt families when terminal or long term illnesses were diagnosed. I found this so sad, especially when put into context by the corruption stories we would hear from the locals. The corruption in Uganda has got to such a stage that aid is delivered direct to not for profit organisations rather than to the government.
Looking back on it all I feel the best investment Lucy and I made and probably will ever make was the time we took to go to Uganda and to work with the talented and dedicated people of MPCU. We spent time working and teaching some brilliant people who will continue doing brilliant work whilst we are back at work in the UK. We saw lots of what Uganda had to offer, including a safari in Murchison Falls National Park and a trip white water rafting down the Nile. I would encourage anyone to take the opportunity to invest your time in something new, challenging and truly worthwhile.
As I type this back at my desk after our trip, getting used to the 9 to 5 and loving my bike ride to work again, I know that I’ve learned and experienced so much that will benefit me, and hopefully left some more IT literate nurses in Kampala! I'd like to thank the amazing MPCU team for being so welcoming. For anyone interested in knowing more about the work Cairdeas does, please look around the site and contact us.
"Can you help me with Skype?"
Bex, Jared, Ivan, Me and Lucy at APCA Conference 2016
Greetings to all our supporters and friends and to those who share with us the vision for a world where palliative care is available to all. Thanks to all who have helped create this great new website and if you have not done so yet please become a FB and Twitter follower #CairdeasIPCT. We will also be putting on twice monthly blog posts with many of our team and partners contributing so please read, comment and think about contributing.
As partnerships are at the core of Cairdeas work we want to start with the words of some of the team at the Makerere and Mulago Palliative Care Unit (MPCU) in Kampala, Uganda who are our biggest partner. We shared these statements as part of our annual awareness month #cairdeaspalliative care #cairdeaspurpleparty but this was pre-website! This team has grown and developed as individuals and in professional achievements in the last 8 years and we are now starting a process of developing our next strategic plan. Huge sacrifices, significant commitment, love and friendship for each other, our students and mentees and in particular the patients and families we serve. Many thanks to all.
Florence who has been a nurse with the team for 5 years and a palliative care nurse for more than 15 years. She was one of the first nurse prescribers in Uganda (and therefore in the world!) and is involved in mentoring both nationally and internationally. The photograph with Dr Gursaran Purewal shows her love of colour with an outfit purchased during her visit to India to present at the international conference in Pune, 2016.
“Palliative care is very important. We found that around 80% of medical patients in Mulago need help from palliative care. We are few in palliative care and this is why we must teach and integrate others so that all can care, rather than always waiting for our team first to see the patients. They can do something for the patient first. We want everyone to speak the same language so that we can give the best care to the patients, to as many patients as possible, across the country.
For me being part of the MPCU team is very important and I enjoy it. But it can be hard. We can be short of funds.
I am also happy to mentor others. It takes me time to understand something but when I do I can teach it and when I teach others I feel happy. I want to inspire others. We are few in palliative care so we need to spread the knowledge. We must empower them.”
Our volunteers have so many stories to tell. Here is Toko Friday Santiago sharing from his heart. (photo with Ivan and our Cairdeas Trustee Jacqui MacIntosh)
"It’s been such a wonderful opportunity for me to volunteer with the palliative care unit for the past five years. I have gained numerous skills and experiences that I have not only used for the benefit of the patients here but also for my family members and friends. This gives me the desire to be part of the lives of the patients. The team has been so supportive and I have learnt communication skills, leadership skills and above all teamwork, which I have learnt is key in all aspects. Palliative care is so important, it improves the quality of life of the patients in offering physical, psychosocial and spiritual support which makes them feel valued and cared for."
Esther received one week’s training back in 2012 and worked as a link nurse on the surgical ward. This involves giving basic palliative care to the ward patients and referring the more complex ones to the palliative care team. She joined the team full time since April and has become an integral member of the team.
“Before I had the training patients who were dying could be neglected as the staff thought they could do nothing for them. But since the teaching I realised there is much I cando for these patients. I can allow them to die in peace and though they were suffering they had a smile on their face because of the care they received.
Since working with the team I have learned much more. Before on the ward most of the times I would have worked alone but now I work as a team who have much knowledge that I can learn. I learn how to council them, how to care for all patients with life-limiting illness.
It has changed me. It has changed my attitude.”
We have been so glad to offer scholarships to key team members and huge congratulations to Dr Liz Namukwaya (PhD) Dr Jack Turyahikaiyo (MMed) and lastly, Ivan Onapito, our pastoral and social coordinator. (see photo of the team party!) He has now graduated with his masters in Practical Theology from the Africa International University, Nairobi.
"The past three years have been a priceless experience for me. The lessons learnt have opened my eyes and mind to compassionate care and how important it is to patients and families faced with life-limiting illnesses.
I want to thank you all the Cairdeas supporters who have carried me throughout this journey. Thank you for all you do to build capacity and improve the quality of life for those who are suffering."
Dr Gursaran Purewal and Florence
Photo with Ivan and our Cairdeas Trustee Jacqui MacIntosh
Hello and welcome to the new Cairdeas site! We’ve been working on the site for over a year and can finally launch it today. Our new home will provide you with:
The latest information on our work, past and present.
Updates from our team around the world via our Blog
A hub for a rich collection of Palliative care resources and links to our global partners
Information for prospective mentors, volunteers and fundraisers.
An online donation tool and regular donation information.
We relaunch today to coincide with the APCA conference in Kampala, Uganda. As we have a big global collaborative team in Kampala this is a great opportunities to present our ideas and engage with the Palliative care community in internationally.
Please expect some more posts following the conference.
One of the great privileges of mentorship and modelling palliative care is seeing the way the experience can transform lives. In Cairdeas and through the Makerere Palliative care Unit we love to have visitors and volunteers who all contribute to the life and work of the unit and leave their mark on our team. Working in palliative care provides opportunities to challenge and change values, to affect our clinical practise but also our attitudes, to develop character and resilience and to reflect on the big issues of mortality, hope and meaning. Daily I am encouraged by those who grasp opportunity with both hands and allow the experience and the time with patients and their families to change their lives. Perhaps in the next post I will include comments and experience from mentors but this time listen to the voice of some of our students and colleagues who have shared the day to day roller-coaster of emotions and the privilege of offering palliative care alongside our team.
Christine with our volunteers on Easter Thursday washing our patients' feet
Christine Brennan and Alasdair Pears are both medical students from Aberdeen University who came to do their electives within the Department of Medicine at Makerere University and attached to the palliative care unit. We met in 2014 when Iwas speaking about Cairdeas at our shared church; Gerrard St Baptist. Elective students have visited us from many universities and countries and we are happy to try and make this a good experience all round. Christine and Alasdair were also joined by Emma New from Oxford Uni and made a great team; including having a lot of fun exploring the beauty of Uganda.
'I am never going to forget what an absolute privilege it has been to work alongside the palliative care team at MPCU. The work that they do has been such an inspiration and encouragement and has changed how I will practice medicine in the future. The team have shown what true patient centred medical care and empathy is as they strive to provide the best end of life care for their patients.
The skills that the team have are irreplaceable and daily they are improving patient’s knowledge
Alasdair with a small relative
about their illness but also invaluably meeting spiritual needs and support for their family. I have enjoyed being in a different medical setting, especially learning more about palliative care in Africa and how prevalent the need is for this speciality, but also the growth and development occurring aiming to fulfil to meet this need across the country.
The volunteers whom willingly donate their time to listen and pray with patients and their families are precious to both the team and the lives of patients that they reach. Holistic needs of patients are vital and MPCU really do go the extra mile to achieve this.
Team ward round
I would like to thank Dr Mhoira Leng, for this opportunity to come and be a part of the amazing work she does in leading the team at MPCU and the development of palliative care that is coming forth for the availability in other areas of Uganda and other countries within Africa. I would like to encourage support for this work, to enable it to keep moving forward. It has been a life changing experience that I will treasure, shaping my medical practice and my heart for my future career.'
Emma took the chance to really encourage our team as well.
'You are a group of wonderful, beautiful human people and your work is so precious and valuable. You have taught me both medicine and life skills and I really, really hope to be able to return to Mulago to work with you in the future.'
Alasdair,Christine and Emma with our church friends at Lugogo Baptist
Here are the reflections from some of our Ugandan students showing how their palliative care placements and training bring about transformation.
'This has been a wonderful experience. It has taught me to be a better doctor in the future. 5th year med student, Makerere
'The palliative care training has made a huge impact; I now see the patient as a person and not a disease, I don't avoid difficult conversations, I don't order unnecessary investigations, I see them as part of a family, I do holistic care. It was not like that before.' MMed doctor in training, Makerere.
All this must be underlined by the way we teach and care for each other. In the words of a Ugandan nurse in specialist training and placed with MPCU.
'I have learnt that palliative care is not a team but a family'.
Rwandan MOH with Dr Liz Grant and Diane Mukasahaha (and me behind the camera)
We have been partnering with colleagues across India, Africa and the UK to strengthen health systems to and bring about transformative change. In particular a 3 year project with the University of Edinburgh and the African Palliative Care Association funded by THET and DFID has enabled us to partner with colleagues in Uganda, Kenya, Rwanda and Zambia. If you want to read more check out https://integratepc.org/. We will also be sharing a unique day conference between Cairdeas International Palliative Care Trust and the Global Health Academy at the University of Edinburgh along with colleagues from DFID and PRIME. Mark the date,come and join us June 19th. Register via https://www.eventbrite.co.uk/e/global-perspectives-for-palliative-care-integration-and-health-systems-strengthening-tickets-16784466792. The previous weekend and following day (June 13th and 14th and 20th) will also be opportunities in Aberdeen and Glasgow to hear more about our work (and meet Christine and Alasdair!) We will also be counting down to an awareness raising event soon; watch this space and see us get a bigger social media profile!! One tip; think purple.
Can these individual transformative experiences change systems and even societies? Can palliative care be a vehicle not just for compassionate care but also for strengthened, compassionate health care systems and communities? I firmly believe we are seeing this happen and am humbled to be a part of this along with Cairdeas, MPCU and so any many others in the worldwide palliative care family. We have been blessed to have a number of colleagues from Rwanda (and many other countries) come
Magnus and Dr Martin Nyundo from CHUK and team members at MPCU
to MPCU to learn about models for integrating palliative care as they seek to develop services in their own country. Thank you Magnus Gasana for all the skills you bring as a clinical psychologist and for your encouragement and vision. I will give you the last word.
'I really highly appreciate the enthusiasm and quality of hospitality you've shown us. This reflects the heart of humanity in health providers. Learning from you empowers us to transform the whole Rwandan society in having a therapeutic culture. We don't doubt that other countries can learn from us as we have learned from you. Yours in solidarity....'
Christmas is full of tradition; food, magical memories of Christmas past, food, parties, presents, more food, singing, joy, laughter and even more food. This is true here on the equator even though there has never been a 'bleak mid-winter' and the sun shines daily. I have my angels on the banana fibre tree, sung carols and eaten mince pies. Listening to an advent podcast I was struck by a meditation on the words of a well known and loved Christmas carol; O holy night the stars are brightly shining, it is the night of the dear Saviour's birth. Long lay the world in sin and error pining till he appeared and the soul felt its worth.' What a wonderful picture; soul worth....a sense of value and validation and affirmation and grace in a world where there is so much pain and sorrow and conflict and grief. Again we are in a time where around the world there are disasters and conflict; many still dying of ebola, children killed in a school in Pakistan and the grinding reality of homelessness, poverty and loss.
Volunteers. MPCU and hostel party
A ward round in Mulago also shows the gamut of human emotions. We have just finished the examinations for our undergraduates and postgraduates in Makerere; nerves, hard work and the pleasure of seeing young colleagues grow and learn as well as the camaraderie of my examiner colleagues. We climb the hill to visit Betty who has been in hospital for many months but so wants to get home to see her young children this Christmas. She should finally get home tomorrow. Then there is Aloysius who needs treatment but how do we get him across the hospital site when he is so sore with the slightest
Enjoying our love feast Acholi food
movement and there is no ambulance available. Thanks to our volunteers who work tirelessly to help. Charles cant move his legs any more but has a caring family who need to learn how to nurse him and give his painkillers as they take it in turns to sleep under his bed. Little Kamau is full of smiles when we have our Christmas party even though he is getting his treatment for cancer daily. Women from across the region who are all having cancer treatment joining Kamau and our MPCU team singing, dancing and of course eating food. My Lugogo church family share a love-feast with guest appearance from gospel music star Joyce Babiyre and of course sharing food (I love malakwang and sweet potato from our Acholi friends).
Sophie and Rachel in Kerala
Press in Guwahati
I am spending the next few weeks in Kampala and appreciating a new home (moved across the compound) and freedom from airports for a few weeks. I am reflecting on an amazing year. The past 2 months I have been in 7 different cites in India meeting old friends and colleagues and seeing how much they have achieved; huge congratulations Chitra Venkateswaran and the Mehac team, MR Rajagopal and the Pallium India team and Dr Gayatri Palat and the MNJ team. Thanks too to Rachel and Sophie on their medical electives from Edinburgh who wanted to learn about palliative care
BCH team Tezpur
in India and took time to float on the backwater with Auntie Mhoira. I was then joined by Dr Gursaran Purewal and Grace Kivumbi (MPCU), Dr Dan Munday (INF Nepal) and Dr Dinesh Goswami (GPPCS) and we travelled to Tezpur in Assam to evaluate the palliative care programme in Baptist Christian Hospital. Inspiring and encouraging. Thanks Dr Jerine and your team and to the leadership and vision of Dr George Koshy and Dr Ann Thyle. Back to Delhi for a busy research workshop - you cant do better than a colleague saying it was 'perfect'. My favourite part was doing some practical research on the famous Moolchand parantha - mixed views on the hygiene but resounding positives from all who took the taste test. What is at the heart of all we are doing in palliative care? What is at the heart of what we celebrate at Christmas? What is on our hearts? We search for meaning and purpose. We need to feel we have a role, that we belong, that we have significance, that we are loved. We want to say with our actions and our words you deserve our professionalism, our service, our friendship, our love because you have value and worth. When
Kamau's party time
our volunteers spend hours trying to get a patient the care they need working with the ward staff and families they are saying 'you are valuable and loved'. When our nurses share a quiet moment with a family as they realise this might be the last time Christmas is shared we are saying 'your life has meaning and you will be missed' When our doctors go the extra mile for someone who is in need and suffering we say 'you are made in the image of God; of infinite worth'. When we see and build the skills of our colleagues to enable them to offer values based care and model this in our team we say 'you can change the world one step at a time' When we see each member of our team as different, unique and valued we say ' together we can make a difference' We are also so conscious of the care and love from many across the globe for our work in Cairdeas as well as the wider work of palliative care. Our Christmas appeal this year focuses on building capacity through scholarships for Dr Jack Turyahikayo and Ivan Onapito. Please click on this link if you can support or link it to your friends. https://www.justgiving.com/Richard-Morrison3
What gives your soul its worth? Perhaps you will be spending time with special 'people sharing, remembering and making new memories. Perhaps you will have moments of wonder; a snowflake, a
Sunset on the Zambezi
sunset, a smiling child, candles glowing glowing in the dark; child's voice singing 'Away in a manger'. I know I can get to this time of year and feel pretty weary; when the day to day frustrations combined with the pressure and busyness of life and cumulative burdens can seem overwhelming. I am so often aware of how often we fail to live up to our expectations and ideals and even just to keep up with the busy agenda. Yet this is a time of grace and renewal and hope. A time of hope and rejoicing because the Saviour has come and our souls have felt their worth...May you have a wonderful Christmas and full of hope for all 2015 will bring. O holy night the stars are brightly shining, it is the night of the dear Saviour's birth. Long lay the world in sin and error pining till he appeared and the soul felt its worth. A thrill of hope the weary world rejoices, for yonder breaks a new and glorious morn.
Imagine 45 degree heat and 7 hours of teaching per day when all of your participants have not eaten or drunk anything since 3am. Add some of the most hospitable and generous people you have met with a heart to make a difference for the suffering and needy in their country along with amazing culture, colourful markets and fantastic food (after 730pm) and you have sense of my recent experience in Khartoum, Sudan during Ramadan. Dr Nahla Gafer, clinical oncologist and palliative care champion at RICK (Radiation Isotope Centre Khartoum), along with Dr Ahmed Elhaj, Dr Mohja Khair Allah, Mr Alfaki Suliman (from Soba hospital) and the rest of the team arranged the first palliative care training for oncology staff. This was in partnership with the Comboni College led by the inspirational Fr Beppino Puttinato and Fr Jorge Naranjo (https://www.combonikhartoum.com/short-courses/palliative-care.html)
They invited facilitators from the Makerere Palliative Care Unit to share their experience and to join the Sudanese team to teach and advocate for palliative care. More than 20 students from 4 hospitals, representing several disciplines and levels of experience worked hard with a willingness to share and consider how they will implement their learning. We had key discussions and offers of support from the Ministry of Health non-comunicable diseases department and the WHO representatives. We met committed hospital directors from the Khartoum Breast Cancer Center, RICK and Medani and heard of the progress in access to oral morphine and the hope to integrate palliative care throughout the hospital setting even beyond oncology and to dream of how this can be available in the rural settings of this large and varied country. We heard too of the challenges with high inflation, geographical distances, lack of training options available in
Sudan and the many upheavals politically in the region. For Mwazi Batuli and myself as well as student and Sudan enthusiast Emilie Myers it was an amazing 2 weeks. We miss the baobab and karkadi drinks, the rugag soaked in milk, the guiding skills of young Yousif, Arabic henna, bustling night markets, the sound of the muzzein folllowed by mouth watering fatur and the deep
faith of Sudan's people but feel privileged to be part of this palliative care journey and look forward to being able to work together in the future. I return with my Sudanese name; Dr Mohira, a beautiful Dafuri basket on my wall, some Arabic henna, a few more Arabic words, a new tribal dagger to cut the haggis at my Burns night celebrations and the joy of renewing friendships, building new relationships and
see people transformed to influence and change their health systems. Shukran. Maybe next time we will get to explore more of this amazing country but to all the palliative care friends we wish you well and know you are going to do great things inshallah.
Anyone reading this and near Scotland this week we would love to share more of the work of Cairdeas 4th or 5th October.https://www.facebook.com/pages/Cairdeas-International-Palliative-Care-Trust/288455601217080
Often these posts are about travels and adventures rather than the day to day clinical rounds. Some of you asked for another wee peek into a typical day and some of the people who make life so rich, unexpected and challenging.
The traffic in Kampala gets worse and worse but if you get up before dawn, arm yourself with a large mug of spicy Indian tea and leave as the sun is just rising you can almost keep your sanity. The beauty of a soft red sun rising above the busy morning activity and the smart youngsters on the way to school makes getting up early worth it (almost). The small team office fills up as one by one everyone arrives though as it is rainy
season they can be delayed. For the past few years we have been privileged to have UK volunteers working with us and they add to so much to our great MPCU team. Anna has just left but Eilidh and Gurs are with us right now and have joined me on the early start. Each day our priority is the patients and families we support on wards throughout the Mulago site. Last year we saw more than 600 patients and their families and many many more were also supported through the volunteer and link nurse programmes. Today Mulago is as busy as ever but has got some smart new beds, mattresses and even hand sanitiser containers (not always full but a good step forward). The nurses look smart in their uniforms and red belts and seem to keep going even when the number of patients seems overwhelming. Let's visit some wards together. Here is a young girl from the west of the country who has had very traumatic events in her childhood and now has an unusual type of cancer and is receiving chemotherapy. Her parents are with her constantly to do all of her personal care and at least she is sleeping quietly today. We can now go and see a young man of 23 who has been diagnosed with liver cancer that is very uncommon in the UK but sadly common here. It is associated with hepatitis B and
perhaps one day vaccination can stop this cycle of infection, inflammation and cancer. Today we need to speak with him and his family and break the news about how far the disease has progressed. At least his pain is well controlled today with the help of oral morphine that is presently in good supply. Our next patient has several problems that are linked; stage 4 HIV/AIDS which drops the immunity and leaves people vulnerable to other problems such as the advanced TB he is being treated for and now a kind of cancer, Kaposi sarcoma. We have some colleagues with us today who are going to be pioneers of palliative care in their Francophone countries; Tunisia, Senegal, DRC and Benin. Chedly from Tunisia has never seen a patient with KS which shows the huge difference in this continent of Africa. They are adding a whole new dimension for the round and stretching my rusty French language skills. Come with us too and see a young girl that has advanced heart disease (called endomyocardial fibrosis) that is fairly common here but very rare in the UK. She has responded to treatment overnight but remains very ill. We have suggested to her mother that we ask for Hospice Africa Uganda to help with her care at home and the mother claps her hands. Why? She is also a patient at Hospice and knows how much care and love they will offer. Still sad for this lovely family but glad Octivia from Hospice is on our round today as she is several times a week. Lastly we prepare to lead a clinical meeting, called the grand round, to talk about difficult conversations at the end of life to help our colleagues think about how to handle these situations and to explore the ethical issues involved. We are going to tell the story of a courageous little girl we looked after recently who agreed to let us share her words. She was very ill with advanced lung fibrosis and had many questions. Am I going to be OK? Why do other children get better and go home but not me? She also got
very frightened at night and asked 'Is Satan coming to get me?' 'Can you help me go to a church?' She was too unwell to go to church but we listened to her fears, supported her family, prescribed some medication to help her breathing and then suggested we brought church to her thanks to our great volunteers. They came with songs, stories, a radio, some ice cream, a children's bible and prayers. Holistic care in action. It was also encouraging to see how many came to the teaching session and were willing to explore and learn how to respond to these very important questions. It underscores how much our colleagues appreciate palliative care and are willing to develop their own skills with enthusiasm and compassion. Its been a busy day and now we have plenty paperwork, examinations to set and mark, panicked students to support who are trying to get their research work in for marking, planning for our next THET project support visits to Uganda, Zambia, Kenya and Rwanda, looking to see how we can manage the budgets this year, answering the hundreds of emails and of course the prospect of battling with the Kampala traffic to get back home to my wee house.
Warning; Delhi in January is really quite chilly. Picture me going to sleep with a wooly hat and wrapped like a parcel in scarves. What was not chilly was meeting again with the Emmanuel Hospital Association palliative care colleagues and sharing together about mentorship. I think
Himalayas by air
Baptist Hospital, Tezpur
this is one of the most crucial areas in building capacity. Mentorship helps another become more self aware, builds confidence, challenges and supports the identification of areas needing growth and facilitates mobilising resources and making changes. As ever Chitra and I worked together joined by Ann Thyle and Marion Mathias who is a GP from Herefordshire. We are seeking to support the development of mentorship within EHA and to offer some further external mentorship support though colleagues such as Marion. Straight away we visited one of the dedicated and visionary leaders and her team at Baptist Hospital Tezpur, but this will be retold more in a future post. However, Marion is soon doing another big challenge; the Paris Marathon. Please consider giving to Cairdeas through her justgiving page. Many many thanks Marion and power to your knees!! https://www.justgiving.com/Marian-Mathias
Claire and Beci
With Anjum, Dinesh at IAPCON
We then travelled to our 3rd state of Orissa, joined by a team from MPCU, Beci, Claire, Alastair, Julia and Ivan. I was so so proud of our team presenting 7 abstracts and 1 paper and being recognised with several prizes. EHA also presented and also shared prizes (well done Ann)and Chitra's team presented some innovative work in the area of mental health with similar recognition. It is not just about prizes of course but the opportunity to share, have work appreciated and affirmed, encourage others and continue to see palliative care developed and lives changed. Thanks to the teams from AIIMS and Bhubaneswar for organising a great conference. For Ivan it was a journey of first experiences, not least being the sole black man at the conference. He tells me he now knows how difficult it is when people stare at you all the time because your skin colour looks different!! He has shared some of his experiences for this post.
MPCU team in Bhubaneswar
'I was in India from the 11th-20th of February 2014 to attend the 21st Indian Association of Palliative Conference as part of the Team from Makerere Palliative Care Unit. I coordinate the team of volunteers at MPCU who are invaluable in providing practical psychosocial and spiritual support to the patients with palliative care needs. There were so many firsts for me; it was my first time to travel by aeroplane, first time to present a paper at a palliative care conference of any kind and overall it was a lifetime experience for me. I presented a paper on “Integration of Volunteers within a Hospital setting” giving the experience of Mulago Hospital where I am based. I was quite nervous since it was my first time to make a presentation at a conference of such a magnitude. I was even more shocked at the awards ceremony when I won joint first prize for my presentation. I enjoyed interacting with palliative care practitioners from various countries and India especially that has good volunteer palliative care services. It was a rich experience for me.
Ivan and Alastair at the Taj
It was not only work, together with my colleagues, we were able to experience and see some of the historical monuments of India, eating their delicacies and experiencing bits of their culture. My highlight was our visit to the magnificent Taj Mahal which left me in awe. India is a very wonderful country, the people were warm and friendly. Overall it was an experience of a lifetime that I will live to tell my children about, and I want to appreciate all those who made it possible for me to attend the
conference and special thanks to my Boss who has been a good mentor to us all at MPCU' As you know Ivan is one of our team members who is receiving a Cairdeas scholarship to continue his theological studies and to attend this conference. Thanks to all who contribute so faithfully in so many ways.
What has been the best story for you this year or in your family and country? People who bring news are important and in the Christmas story angels play a significant part. They announce the message of the coming baby to Mary and to Joseph, they told that this baby would be the saviour of the world, they then announced to the whole world in a heavenly choir the great news , peace on earth and goodwill towards men.
I have been thinking about the message of the angels and also how angels can become a symbol of hope and protection. I am sitting on Christmas eve on a balmy evening looking forward to a warm, tropical Christmas without the crispy snow and frost that is so familiar in Scotland. I hear this year there are even storms and severe weather. But then that first Christmas there was no snow, despite our many Christmas cards carols that say otherwise.
I have a banana fibre Christmas tree hung with African angels and several other beautiful angels made from local materials including bark fibre, safety pins and local fabric. We also have shared beaded angels on our Cairdeas stalls for some years made in South Africa and Uganda.
There have been some precious stories of ways these simple symbols have represented love and care. One of my friends showed me the wee angel I had given when her husband was dying. She has carried in her purse as a reminder of God's care for several years. Another friend shared how her very sick friend asked to her to give an angel to each of her family so they can hang it on the tree and remember her.
We had a party with our patients at Mulago last week and so enjoyed singing in several languages, eating cake and piled high plates of Uganda food. I was sharing one of the names given to Jesus and often given as a name to boys here in Uganda. Emmanuel which means God with us. This was the profound message of the first Christmas. it is also the amazing message still here today. My Rwandan colleagues then spoke of us being little Emmanuel. Being the presence of God in each other's lives and in the lives of those who have little good news and even less peace. We think of our brothers and sisters in South Sudan and Syria and many other places of conflict this Christmas. We think of the many people ill in hospital or at home, those who are missing loved ones, those who do not have food or clothes, who do have choices over their lives. Many of us will have an symbolic angel in our homes or on our Christmas trees this year. Perhaps we can take the good news the angels sang to heart and let it change our lives but also let it change how we relate to the world around us. As one of the greatest global leaders said; 'Our human compassion binds us the one to the other - not in pity or patronizingly,but as human beings who have learnt how to turn our common suffering into hope for the future'. Nelson Mandela
Last evening I was privileged to attend a celebration of the life of David Livingstone in the soaring and chilly beauty of Glasgow Cathedral. I was then asked to be part of a debate on what would Livingstone (WWLD) do if he were alive today. All the suggestions were persuasive and compelling (eradicating HIV/AIDS; Ms Mphatso Nguluwe , ending modern human trafficking;Sir Kenneth Calman, mobilising churches; Rev CB Samuel and addressing the global pandemic of untreated pain and lack of access to palliative care; yours truly) I have included the whole of my 4 minute speech for you to review. Sorry you can't vote for the others as well. At Cairdeas we are particularly delighted to partner with EMMS International https://www.emms.org/ who are the main support behind the palliative care developments in EHA, India, that we also support, as well as in Malawi. Now to finish packing in time to catch my plane back to the tropical heat of Uganda.....
'My thanks to my fellow debaters for their moving and persuasive presentation, to EMMS and the organisers of this event and to Dr David Livingstone for his inspirational life and example which we have come here to honour and celebrate.
5 billion people in our world do not have access to pain relief and palliative care, many of these with chronic, debilitating, life limiting illness. HIV AIDS as we have already heard but also rising numbers of those with cancer, growing problems with heart disease, rapidly increasing numbers with poorly controlled diabetes, kidney failure with little access to dialysis and multiple respiratory problems due in part to cooking fires in huts with poor ventilation.
This burden of disease has an incalculable effect on individuals, families, communities and even national economies as it disproportionately affects those in low and middle income countries exacerbating poverty and creating a trap for many more to fall into, where meager resources are used in a futile search for help and future generations denied opportunities and hope. This global pandemic of untreated pain affects hundreds of millions of people in our world and is described by the World Health Assembly as an urgent, humanitarian responsibility.
Oral morphine, one of the mainstays of pain relief is simply unavailable in most of the world. Of all the morphine legally produced and used every year 94% is used by countries that represent only 15% of the world’s population. One of Livingstone’s achievements was to ensure that a simple medication made from Peruvian tree bark would be available in a safe and effective formulation. These ‘Livingstone’s Rousers’, which combined quinine and rhubarb, were a significant advance and I think he would use same energy and determination to champion the provision of another God given medication; the extract of opium we call morphine.
Imagine the anguish of medical colleagues seeing patients in such severe pain yet unable to help, imagine the distress on a mothers face when her tiny daughter injured by severe burns when she pulled over paraffin lamp screams in pain without relief, imagine the quiet endurance and silent agony of a young mother whose breast cancer has spread to her bones and dares not move lest it hurt, imagine the nurse who avoids dressing the wounds of her patient as she cannot bear to hear the shouts of pain, imagine the elderly man who prays that God will take him soon to spare him further anguish and stop draining the family finances.
Palliative care is about quality of life and holistic support addressing the physical problems such as pain but also the isolation and financial drain of chronic illness, the loss of hope and meaning, the powerlessness and despair. It is about empowering communities, restoring dignity, relieving suffering, walking alongside those who face darkness and despair with all our medical skills and also a message of hope and promise of presence.
Livingstone engaged with some of the greatest causes of suffering and injustice in his day but above all he was concerned with what would Jesusdo. WWJD leads to WWLD.
Livingstone was an ambassador for Christ. Taking the good news of reconciliation with God, with one another, with ourselves and with a world that is beautiful, exciting with untold riches to be explored. Livingstone was also a beacon to challenge and inspire others to be involved in this God ordained work of bringing reconciliation and healing and an end to needless suffering. Livingstone was not afraid to challenge and convict others, to stand against the prejudices of his day and to live his life in the extreme for the cause he believed in.
Many years ago I sat under a baobab tree in Malawi and made a decision to engage in this cause in Africa and India. It has been a wonderful adventure and tremendous privilege for me filled with challenges and blessings. This tree was over 200 years old and local legend has it that Livingstone would sit there; perhaps also contemplating the calling God has put on his life.
Ladies and gentleman; lack of access to pain control and palliative care is one of the most significant global injustices facing our world today. I put it to you that freedom from pain, restoring dignity and relieving suffering would have been a concern, a motive, an imperative and a journey of untold adventure for Livingstone; as it is for each one of us.'
One of the greatest privileges of my life is to be a mentor; to see and support others to explore themselves and to develop and grow. I meet and work alongside inspiring and committed people who are open to learn, eager to develop new skills, thirsty for knowledge and willing to share something of their life's journey with me. To see a young and perhaps faltering student manage to develop clinical judgement; to watch a young physician in training realise the impact of holistic care; to help colleagues do their first research project; to see clinical skills honed; to facilitate the journeys of self awareness and self acceptance; to support national leaders take up their roles with confidence and to listen as colleagues struggle to balance the commitments and dedication to palliative care with family and personal needs and demands is demanding yet such a blessing.
Anjum and Dinesh with their sleepy mentor
I have just returned from the Leadership Development Initiative course now hosted by Ohio Health. 21 leaders along with the innovative and hard working faculty, the visionary funders and gifted mentors spent an amazing week together sharing their stories, learning how to communicate our messages and encouraging one another in our journeys internal and external to be leaders in palliative care.https://www.ipcrc.net/news/category/international-leaders/ This initiative seeks to grow leaders in order to advance palliative care and to make a difference for the many many people who are in need across our globe. It was incredible to hear tales from 5 continents and to listen to how often it is a personal tragedy or experience of loss or pain that acts as the spur to be involved with this demanding yet rewarding path that so deeply connects with the pain in our world yet also brings hope and joy to the places of despair and sadness. We also heard of incredible achievements; Nepal now has access to affordable oral morphine thanks to the work of Dr Bishnu. Dr Eva wrote the first ever morphine prescription in Guatemala. Dr Chitra is pioneering the need for holistic care within chronic mental health. Dr Odontaya is now a TV celebrity in
Team building last course
Mongolia integrating palliative care in that resource limited situation. Dr Israel is preparing to start the first postgraduate training for palliative care in Nigeria. Dr Dinesh plans to have a message that 'pain can be helped by choosing palliative care' screened in the cinemas of Assam and even available as a ring tone. Dr's Snezana (Serbia) and Dilsen (Turkey) are making their vision for integrating palliative care in oncology centres a reality.
Dr and Mrs Israel Kolawole
Dr's Shoba and Anjum are establishing their hospital as centres of excellence for training in Jaipur and Bangalore. Dr Nicholas, Marta and Leonardo are changing the face of palliative care in Latin America. Dr's Ali, Narine and Silviu face huge challenges in Albania, Armenia and Romania and can feel overwhelmed yet are helping build their societies and make a significant difference. Dr Rumana is one of very few palliative care clinicians working in her nation of Bangladesh. Dr's Sam and Charmaine, you are reaching out to some of the most vulnerable in Uganda and South Africa and Dr Esther is working in our sister hospital in Kenya and now has a mandate to represent the needs to her Ministry of Health. To all of you and to the amazing faculty and fellow mentors; thank you for the sacrifices and commitment; thank you for sharing your journey with me and each other, thank you for blessing my heart and for being a blessing to so many.
These next few weeks I will have the opportunity to share more of the work of Cairdeas and our partners at meetings and conferences in the UK. Please come and join if you can. https://www.facebook.com/events/687542981262603/. There will also be a UK based conference to look in more depth at mentoring and sharing with colleagues involved in the THET palliative care project as well as Palliative Care Works and an opportunity to share at the Scottish CMF conference. I'm looking forward to meeting many folk after a long gap and sharing some of the blessings I receive as a world citizen and representative for Cairdeas and reflecting the Gaelic meaning; friendship and fellowship. I quoted from Tennyson's famous poem Ulysses when he says 'I am a part of all that I have met'. In this global age we are still brothers and sisters; sharing in the joys and the pains. The boundaries of nation, faith and ethnicity serve to enrich but should not divide. Each meeting, each experience, each challenge serves to enrich our lives and help us grow in love and service. As the man of wisdom says in the book of Ecclesiastes; 'there is a time for everything under the sun; a time to weep, a time to laugh, a time to mourn and a time to dance' Let me finish this post with a quote from one of my colleagues and former students who summarised the role of a mentor in a way that humbles and inspires me. A mentor is 'the one created by God to wear another's shoes'.
A few weeks ago I made my second visit to West Africa and my first to the power house of Nigeria. I had been promised a warm welcome with plenty spice so after a lengthy visa process taking several months I arrived in Lagos surrounded by the energy and colour of a fast growing city of over 8 million. Relaxing before travelling on to my destination of Ilorin in Kwara state, I thought I would test the food; 'pepper fish and jollof rice please' and almost found my chilli match. For those of you who know me that is no mean feat and confirmed I would love this place.
Dr Israel Kolewole and his team at the University of Ilorin Teaching Hospital (UITH) were welcoming hosts
and ably demonstrated the leadership and commitment needed to make their palliative care programme into one of the centres of excellence in Nigeria. Nigeria has had steady but slow development of palliative care and scarce availability of essential medications and trained staff. This is now changing and with the leadership from the Hospice and Palliative Care Association of Nigeria and the help of partners such as Hospice Africa Uganda and Treat the Pain significant progress is being made.
In Ilorin Dr Israel is one of the leaders being supported through the Leadership Development Initiative and I was visiting to see what he has been achieving and to offer mentorship. He is a senior colleague with a Masters in Palliative Care who is a anaesthetist and specialist in pain management. He is committed to ensuring palliative care is integrated and made available to those in need. He has established an enthusiastic team with several trained nurses and plans to support them to access Diploma and Degree courses in Uganda.
We spent time on clinical rounds in the very impressive University Hospital and in meeting key leaders and
colleagues. Dr Israel had developed and submitted and innovative curriculum for Postgraduate Diploma in Palliative Medicine at the University of Ilorin and I was delighted to be hosted by the Vice Chancellor and Dean who not only made a public commitment to ensuring this programme becomes a reality but also that palliative care is integrated into the undergraduate medical curriculum. This will be the first postgraduate training available in West Africa and establishes Ilorin as a key centre for Nigeria and the region. Congratulation for this breakthrough although I realise much work lies ahead! Check out the link to the article on the University website.
The Chief Medical Director of UITH, Prof. A. W. O. Olatinwo, is committed to seeing holistic and quality care offered in his hospital and community and sees palliative care as providing key leadership This is such an exciting combination of senior palliative care leadership with a major hospital leader understanding and wanting to integrate palliative care. He arranged a senior meeting of his staff in the hospital and allowed us to present integrated palliative care and then listened to his colleagues before making
a public commitment to moving PC forward. There is already a new Hospice building on the hospital site which Israel hopes to be the focus of a day care and community outreach programme. Topping off my visit was a meeting with the Ministry of Health district office who committed to PC in all hospitals in the region and the charity arm of the presidents wife in Kwara state who were asked to support women and children's needs. All in 5 days!
Many thanks to Dr Israel and his family as well as Abiola, Aligeh and the rest of the wonderful team. They were amazing and generous hosts including praying for me in my hotel room and when I left, taking very good care of any security issues and helping me explore my new found pleasure in Nigerian food and dress. This amazing gown not only was a wonderful present but make travel back to Lagos a dream; dress like this in Nigeria and even the airline check-in staff ask for a photo.
Back to the food; if you get the chance make sure you try efo riro, pepper soup, egusi, fried plantain, jollof rice, amala, fufu and of course pounded yam. I might give the pomo (cow skin) a miss next time.
For me personally there was also the opportunity to connect with a special person in my past; my maternal grandfather Robert Forrest. He worked in public health in Nigeria, including Kwara state, for more than 20 years in the 1920's to 40's. My Nigerian friends gave me honourary Yoruba status and were delighted to phone and greet my mum in the UK who has many memories of visits to her father. Those journeys were by boat and fraught with the dangers of malaria but after a 4 day journey home (care of many delays) I can empathise a wee touch.
One of the fascinating aspects of travel is being able to experience local traditions and cultures. It is humbling to be welcomed into villages and homes and to share our basic humanity as well as all the quirks and nuances that make each one of us unique. I have been introduced by a friend and colleague in India as a 'chameleon' which think as meant to be compliment to my ability to blend in rather than a comment about wrinkles. I was talking with one of my Ugandan friends, Florence, and we spoke of the amazing differences and cultures and how this can create challenges as well as joys and her reply was 'we had better get used to it as it is a taste of heaven'. Let me share some places and people that have given me a 'taste of heaven' these past few weeks and months.
Mhoira and Julia
Celebration with Mwazi
Early January saw the culmination of many many years of hard work for faculty and students with the first graduates from the BSc programme in Makerere University and run by Hospice Africa Uganda. Some
unfortunately could not afford the travel but we gathered from Uganda, Tanzania, Cameroon, Malawi and Kenya. MPCU (Makerere Palliative Care Unit) had 3 graduates; Mwazi Batuli, Liz Nabirye and Frida Kolya so extra special celebrations. There was also a Ian Jack Memorial special award to the student who had achieved this despite many personal challenges and this was given to our inspirational friend from Zimbabwe Franciscah Tsikai. This award was given by Prof Barbara Jack in memory of her father. Francis I still remember your first year when you stood with me in church and wept tears as you gave thanks that God had blessed you with the fees for one year and for all his goodness.
Proud graduates and faculty
Franciscah with her award in Zimbabwe
Participants Lucknow leadership course
4 weeks in India allowed me to sample 4 climates from the foggy mornings and chilly days in Lucknow to the balmy warmth and crazy traffic of Bangalore and the cool of Guwahati. In SGPGI Lucknow we were running workshops in leadership, management, teaching, self awareness and symptom control; Cairdeas was working with Pallium India, Emmanuel Hospitals Association and SGPGI. We had an amazing time with great faculty ( thanks Chitra, Sanjay, Anne, Charu, Angela and Carl) and enthusiastic participation (spot the innovative giraffe) from colleagues across UP state but also including Assam, Mahrashtra, Bihar, Gujarat and Kerala. In all EHA sent participants from 7 hospitals (Prem Sewa in Uttarala, HBM in Lalitpur, Duncan in Raxaul, BCH in Fatehpur, GM Priya in Dapegaon and Baptist CH in Tejpur) and have already started 3 palliative care programmes with one more to follow very soon. meanwhile SGPGI is developing as a centre for palliative care excellence and we were able to work with them to plan ahead. In Bangalore we
Angela 'at home'
Chitra helping Carl and Angela to shop
Charu, Angela and I travel in style
MPCU winning poster
took part in the Indian Association for Palliative Care 20th conference and joined the celebrations of 25 years of palliative care at Kidwai Cancer Institute. MPCU had 5 presentations and sessions and managed to be awarded one of the first prizes for the posters and the oral presentations Angela Kaiza from Tanzania joined us for the whole trip as part of our collaboration with PCPi (Palliative Care Partnership initiative and Tanga region and was able to lessons from her setting. She took to India like a duck to water - though was very happy to taste an authentic Lucknowi biriyani with plenty meat! Dr Jo Dunn was also able to join us from London and helped deliver an excellent ethics symposium. Lastly on my tour was the city of Guwahati set on the banks of the Brahmaputra river and capital of the state of Assam. Dr Dinesh Goswami is one of the leaders being supported by the Leadership Development Initiative and it is my privilege to offer mentorship. He organised
Lakshmi puja, Guwahati
only the 2nd (last one 10 years ago) state wide meeting to discuss integration for palliative care and opioid availability as well as a workshop at the local medical college.Anyone who knows Dinesh can vouch for his gracious and dedicated spirit and he amazing work he has done. Home via the snows of bonnie Scotland but I am realising there are too many 'tastes of heaven' for one blog post. So I will keep the tales of Scotland, Cairdeas developments and recent events in Uganda for a post next month. Let me finish with a quote from some of our students that encouraged us and encourages all who teach; 'Thank you so much for the support you accorded me throughout the course. It was strengthening at my point of weakness and source of support when I needed it most. Your contribution was so great and words cannot explain it fully. You were great and thank you so much for that!. This is Holy Week in the Christian calender and a time to remember the incredible hope we have in God. I pray this Easter time you find that sense of hope and meaning and spend time with people and in places to gladden the heart and encourage the soul.
Christmas is a time to reflect, celebrate, enjoy friends and family and sense again the wonder of God coming down to earth as a tiny, vulnerable baby. We know the stories and the carols and we all have our own traditions. I have been privileged to spend Christmas in many different parts of the world. In India we ate fragrant chicken biryani and the CMC Vellore students came round late at night to sing carols; in Kerala the Santas wore plastic faces and surgeons gloves which was a little disconcerting. In Tunisia we had plenty choices of turkey along with spicy harissa and then sang carols on the beach. In Scotland I have been known to go paddling in the snow - in a kayak! Here in Africa I have spent Christmas in the middle of the amazing animals, birds and scenery of the national parks of Uganda and last year saw a leopard hanging out in a tree! I also am able to join a Lugogo baptist church tradition of a Love Feast. We are invited to bring food from our national or local setting and to bless one another, care for one another, sing and dance (and Acholi dancing is AMAZING) and share the love of God within the church and with those who are vulnerable, lonely and in need. I was busy baking cakes and very happy to have some special Acholi food ; malakwang, boo and lapena! What a wonderful concept! Instead of focusing on what we get and the increasing materialism of our world we focus on what we can give, with whom we can share blessings, who needs a hug, who can we thank for all they are and all they give.
We were able to put this into practise at our first patients' Christmas party in Mulago. There is a hostel that allows women to stay who are receiving radiotherapy treatment for several months but who come from far away and cannot travel daily to Mulago. It is the only radiotherapy centre in Uganda and also take patients from South Sudan, Eastern DRC and Rwanda as they do not have any radiotherapy in those areas. These ladies bring a family member to care for them but are otherwise so far from family and friends, often worried and frightened by their illness and the treatments and with very little to encourage or support them. Our nurses and volunteer team visit regularly to offer practical, social and pastoral support. We decided to try and have a small party for the first time. Picture the scene; a very hot day, more than 50 patients and carers, singing carols and songs, sharing moving testimonies, offering encouragement, dancing, varied languages and dialects and traditions, tinsel trimmed hats, DVD with the nativity film, guests of honour from the radiotherapy department and above all food - good African food heaped as high as possible on every plate. Many thanks to Cairdeas for sponsoring the party, to the volunteers who worked so hard to make it come true and to all for sharing and loving. A true Love Feast.
There is beautiful poem by Christina Rossetti in 1893 called Christmastide that has been sung as a carol at Christmas since then. It is titled
Love came down at Christmas....the last stanza reads .....
Love shall be our token
Love shall be yours and love be mine
Love to God and all men
Love for plea and gift and sign
From all at Cairdeas and the MPCU and from myself have a wonderful Christmas as we look forward to another amazing year with many more feasts of love!
If you want to support in any way please get in touch or go to our Christmas appeal to support training. https://www.justgiving.com/operations-cairdeas
Hi to my friends; after a VERY LONG silence I am going to post a few entries over the next few weeks as a reflection on an amazing year in the work of Cairdeas. I was reminded of this quote attributed to Mother Theresa a few days ago; 'At the end of our lives we will not be judged by how many diplomas we have received how much money we have made or how many great things we have done. We will be judged by; I was hungry and you gave me to eat. I was naked and you clothed me. I was homeless and you took me in' and the biblical quote continues, 'I was sick and you cared for me' I want to share some of the humbling ways we are able to work in partnership to support some of the most vulnerable in our world - those in pain. Teaching, training and mentorship is one of the key ways we are working to build capacity for palliative care. For those who want to support our Christmas appeal to help build capacity and training please click on our link to read about 2 of our our justgiving site. https://www.justgiving.com/operations-cairdeas I have had the privilege this year of visiting 10 countries (including UK and Uganda) to be involved in training. A much used format is the Palliative Care Toolkit and Training Manual (find 7 different language versions at https://www.thewpca.org/resources/) developed to support introductory learning in palliative care and to model an interactive learner centered style. This is good adult learning terminology but what does it look like in practice?
Serious planning in Mussoorie
Let me tell you some giraffe building tales. Take a few newspapers, some sticky tape, several willing (or not so willing) learners divided into groups with a good dollop of enthusiasm and give them 10 to 15 minutes to make the tallest giraffe possible to win - with one proviso; it must stand for 10 seconds unaided. The aim of this exercise is to demonstrate team working and it is amazing how many learning points emerge; 1. ensure a clear vision; a very long neck and the incredibly long legs may not support that fat body 2. planning; perhaps some thought to how to strengthen the base and legs will be worth the time taken
Jumana leaning giraffe
3. collaborate; fighting over the sticky tape means everyone is slower 4. participate; everyone has a role and something to offer even if they don't shout the loudest 5. innovate; who thought up the newspaper base to stop it slipping 6. celebrate others success; sabotage to the other teams' giraffe in order to try and win never works (or at least will be disallowed)
Hugs for the winners in Aberdeen
Sounds straightforward? Easy to describe but can go a little haywire when the facilitator (me) loses control of 40 wonderful but feisty colleagues in Ghana such that we had to remove the giraffes to prevent sabotage and actual physical harm now known as the 'giraffe mob' incident. Then we had some Swahili fun in Tanga region with gales of laughter and no giraffes left standing. High in the mountains of India in Mussorie colleagues on a leadership course wanted to argue their giraffes were tired and needed to lean on the table for some support. Easier with the UK friends who came to the annual Cairdeas gathering - with the team which included a physicist and orthopaedic surgeon winning hands down - or is that hooves?
Sunset in the Himalayas
Sculpture in Ghana
All part of the privilege of being involved in international training; seeing colleagues grow and learn; mutual sharing of the joys and the challenges of palliative care where physical resources are often so limited yet spiritual and cultural resources so rich; helping train and equip leaders for the future; warm and generous welcome into so many different cultures; inspired by the people we meet and the beauties of the natural world.
As the African proverb says; 'If you want to go fast travel alone; if you want to go far go together.' Many thanks to all who have traveled this journey with me and with Cairdeas in 2012.
I cant believe it has been so long since I posted - sorry for those who like more regular updates. So a quick review of the past few months over the next couple of posts. At the invitation of Dr Ann Thyle and the Emmanuel Hospitals Association we formed a truly international faculty to teach the Palliative Care Toolkit in Delhi November 2011. Let me introduce you to the faculty; Dr Ed and Penny Dubland from British Columbia who have been visiting India for some years but even better Ed speaks fluent Hindi as a legacy of his childhood at Woodstock school; Dr Chitra Venkieshwaren our wonderful Cairdeas friend and regular faculty who is based in Kochi where she leads psycho-oncology developments and services; Dr Jane Bates who leads palliative care in Tiyangane clinic based in Queen Elixabeth University in Blantyre, Malawi; Josephine Kabahweza who is the senior nurse from our Makerere Palliative Care Unit and wowed everyone with her African dress and enthusiasm; Dr Ann Thyle from India who is the director of EHA programmes in EHA and yours truly. Funding support came from several sources including EMMS and Cairdeas. We were a great team!
The participants came from across the EHA network and brought so much enthusiasm and dedication to develop palliative care. Teams came from MP, UP, Delhi and Uttaranchal; many working in rural settings where there are few options for care. We laughed, shared, played roles, sang, even cried and certainly learned so much together. EHA have plans to develop palliative care across their wide range of hospital and community programmes and we hope to be able to continue to offer training support.
Visiting Mr S at home
I also had great fun introducing my Uganda and Malawi friends to my favourite parts of Delhi; dinner at Karims, smells and sounds of the old spice market, wonders of the Red Fort and Jama Masjid, goats with tinsel round their necks ready for Eid, rainbow colours of fabrics, momos for lunch, hot sweet spicy chai, transport by auto, metro, taxi, cycle rickshaw and then a classic Indian overnight train.The latter took most of the faculty to the Harriet Benson Hopsital in Lalitpur to evaluate the first 18 months of the first EHA palliative care service. What a lovely welcome and so encouraging to see how much has been achieved. We met several patients and their families who spoke so movingly about the care given to them. As the local health administrator (Add CMO) said about the PC team; 'these people look after those that everyone has rejected.'
Smiling or worried???
perhaps a good place to pause. Palliative care is reaching out to some of the most vulnerable who face suffering and distress due to chronic disease where the focus is on quality of life. What does that mean? Perhaps Mr S (seen above on a home visit) illustrates this well; he had treatment for cancer which left him tired and in pain and unable to work in his fields to support his family. In desperation he was told by a friend to come to HBM hospital. 1 year on he is free of pain and back working and enjoying the birth of his newest grandchild. In his own words 'my heart has become less heavy, I feel at peace, my pain is less.'
Makerere team with our new teeshirts
Back to Kampala where our team were able to have a special Christmas celebration. Thanks to everyone for hard work, love and care and welcome to our new volunteer team as well as the link nurses from Mulago Hospital and the deputy senior principle nursing officer as guest of honour. 37 people singing and eating and celebrating the end of a year and the hope of Christmas. The boat trip added adventure - particularly as most for the team had never been on open water before!!!!!So many challenges along the way this year yet also so much grace and joy. We are blessed indeed.
52 students from 10 Africa countries; 10 weeks of intensive teaching; committed faculty dealing with last minute crises and problems; international faculty from the UK augmenting the expertise and adding to the rich mix; learning from an inspirational group of colleagues; singing every morning; dancing together in church; speeches, cakes, first ever clinical OCSE exam....we are nearly at the end of the 2011 face to face teaching session for the BSc in Palliative Care run by Hospice Africa Uganda and offered by Makerere University.
Charity concert with 3rd years
It is always an intense few months with many challenges but as before the inspiration of working in a committed team and with such inspirational students is humbling and rewarding. Many of the students are experienced palliative care colleagues and leaders in their own settings and bring their wealth of knowledge yet are still willing to learn and share. For some this is a new opportunity to travel and learn. Let me do some introductions. In the 1st year group are Eric and Eric from Cameroon. They had never had passports before let alone traveled by plane. Joining them from Zimbabwe is Chengerai and together they had great singing voices and joined me in our church thanksgiving service.
Malawi 2nd years
Our first Cairdeas scholarship students, Lois and Gertrude were part of this group and were proud to share in the visit to Mulago - their place of work too. In the second year were some familiar faces as well as many newcomers. 5 from Malawi showing the huge commitment to training and developing palliative care across that country and especially good to see them all back in Uganda having visited most of them last year. Christopher spoke of the way he has grown as a leader through the course. Then the 3rd years; pioneers having to manage the many glitches of a new programme with forbearance and tackle new subjects such as research and mentorship and doing so with enthusiasm. For many balancing the demands of work and family and study and finances are so challenging. Supporting one another and forming close bonds of friendship. Amos and Willy singing duets to calm the nerves before the first OCSE (Clinical ) exam; and who was more nervous; the students or the examiners most of whom were new to this style of assessment.
Prof Barbara Jack and myself relaxing
Prof Anne, Jo, Zena, myself and 1st years farewell cake
What of my fellow faculty members? Still smiling and supporting even when the challenges have been many and the many new members at Hospice Africa Uganda working well together. Working long hours and giving of themselves in many ways too. Sharing expertise especially with those from the UK who are part of THET link project. Some old friends such as Prof's Scott Murray, Julia Downing and Barbara Jack but also new colleagues in Libby Ferguson and Ruth Adams.
2nd years and faculty
End of Children's module teaching
Prof Anne Merriman was speaking to the students at a reception in her home and reminding them that the word 'hospice' shared a derivation with the word 'hospitality'. Opening our homes and our hearts to those in need and supporting one another. It is sad to be saying goodbye to colleagues and friends yet the friendships and bonds made during these weeks will remain and grow and we are richer and more blessed for the meeting of hearts and minds and cultures. We also as a MPCU team are very sad to be saying good bye to Dr Jo Dunn who has been such an important part of the team as well as friend for the past year. We wish her every blessing in settling back in to London life and a huge thank you for all she has given to us and to Uganda. We also welcome new members with Dr Jack (Ugandan) and Dr Lesley (UK) Meetings and parting remind me of the motto of Aberdeen city; 'Bon accord...happy to meet, sorry to part, happy to meet again.'
Apologies for the sparse posting recently. The months have flown past but I will give you a wee taster of my work and travels. As I reflect back over
Ward round in Mulago Hospital
months I am so conscious of the privilege of working alongside dedicated and committed colleagues. There is overwhelming need in every setting with so many needlessly suffering pain and distress and also so many that need to know someone has noticed or witnessed their experience, someone cares and someone will 'be
Dr Nahla and me in Khartoum
there'. We talk about the therapeutic value of 'presence' in palliative care; offering companionship, value, meaning and hope alongside our clinical knowledge and skills. There is so much we can do to alleviate suffering and pain but we are our best 'therapeutic tool' offering ourselves in relationship and partnership with those who are in need.
Palliative care at RICK
The global palliative care movement is full of people who are activists to see policies and systems change and communities mobilised, to access training for themselves to be better equipped and then to train others, to find innovative solutions with minimal resources and most of all to offer their skills and time and care to those in need. Dr Nahla Gafer is one such champion. She is a radiation oncologist at RICK, the national cancer hospital in Khartoum. Following on from initial training and support from Hospice Africa Uganda's international programmes including a month in Kampala, she has been developing palliative care in her hospital and supporting a wider movement in Sudan.
Pyramids at Nuri
Her team has included Esther Walker, a British palliative care nurse, and they have achieved an amazing amount since I last visited in 2009. There is a functioning palliative care unit, a country wide planning team and completed initial training. I was able to support her in visiting key colleagues in the universities and delivering some lectures. I was privileged to be asked to sign the visitors book by the Dean at in Khartoum University; green tooled leather and entitled 'Kitchener's book'. Meeting patients and their families I was struck by the gentle, compassionate, skilled care being offered. Patients often travel huge distances across this vast country to access treatment and arrive at hospitals with very advanced disease. Having access to pain relief and palliative care makes such a huge difference. A picture can only convey so much but I think you can sense the compassion and care from our Sudanese colleagues. Being in Khartoum I even got to see an old friend (Kelly Macaulay) and see the pyramids; did you know there were amazing pyramids in Sudan?
IAHPC stall with friends!
Dr Liz Namkuwaya from our Makerere PCU and I were both able to attend the European palliative care (EAPC) conference in Lisbon and share with colleagues across the world. Inspiring and encouraging to hear of so much progress - yet still many challenges. I was delighted to participate in the International Primary Palliative Care Research group once again and to meet colleagues from the International Association for Hospice and Palliative Care. The latter has an excellent website and resources. https://www.hospicecare.com/ We presented some of our work and were joined by Dr Jane Lewington who worked with HAU is now back in the UK and Willhemien Westerhuis, a medical student from the Netherlands who did an elective project with us.
Christopher, Batholomew and Karilyn
Last of of my reflection comes from a recent visit to Tanzania. Tanga region has seen an amazing regional development for palliative care led by Muheza Hospital and the Diana Hospice Care centre. One of our students on the Makerere/HAU BSc Degree, Bartholomew Bakari, is a key team member and it was a privilege to see him and 2 other current students; Violet and Julius. It was great to attend the regional meeting and see the encouraging progress and commitment as well as hear about the many challenges. Palliative care skills and medications including morphine are available at district level enabling many many more to access care and there are plans to see this roll out to the village level. There have been several mentors from the UK joining this project and the partnership has been so beneficial. Team after team shared how they were reaching out to their communities and bringing pain relief and care; often with minimal resources but great dedication. Well dome Tanga region and to Dr Karilyn Collins (founder of Muheza Hospice Care) and the teams on the ground. Violet, who leads the palliative care team at Tanga regional hospital and is also completing her Diploma from Hospice Africa Uganda / Makerere University, shared this meaningful statement; 'Palliative care or Hospice is not about having a building or funding. Palliative care is the commitment of people witnessing the suffering of people with life threatening conditions and responding to their need for pain relief and to die with dignity' Thank you to all of you who not only support Cairdeas but moreover are part of a global commitment to bringing justice with compassion to the many millions who do not have access to pain relief and dignity.
Sunrise Indian Ocean
For an excellent and moving documentary entitled Freedom from Pain' click on this link ans watch out for cameos from Dr's Mhoira, Liz and Jo. https://english.aljazeera.net/programmes/peopleandpower/2011/07/2011720113555645271.html I have much to share about developments in our team in Uganda but will save that till my next post.
For the past decade I have travelled to India at this time of the year to meet colleagues and friends at the annual international conference of the Indian Association for Palliative Care. It is such an encouragement to see former students now
Ancient Imam Bara
confidently leading services and presenting their work, to see young nurses nervously, yet proudly, standing by their first research posters, to see a new
Elephant statues in a new municipal park
state raise the profile of palliative care with politicians and the community as they host the conference and to enjoy the welcome and colour and spice of India. This year the conference was in the city of Lucknow, an ancient, richly historical city I have been visiting for a couple of years. The theme was 'networking' and we were able to share some of our work here in Uganda as well as hear reports from across India. Dr Jo Dunn joined me from Kampala as well as Nicholas Mellor from the UK and my friend Geoff Andrews from Congo. The paper I presented focussed on how palliative care training can challenge students and teachers at a deep level; challenging values and so changing practice. The paper can be downloaded from the Cairdeas website if you want to read more. It is at the heart of all we do in Cairdeas and can be illustrated by a quote from a recent student in Kampala; “It changed my practice. When I see a patient very sick I don’t give up, I know there is still something I can do for that patient, it was not like that before” Long awaited news was also announced that the medical council of India has recognised palliative care for its MD (Specialist) training programme. A great step forward but still so much to do to ensure that there are trained leaders for palliative care and services that mean patients and families have the care they need.
Rickshaw drivers and friends
Nicholas and a cycle rickshaw driver
As I mentioned earlier, these events allow for local initiatives to raise the profile for palliative care. How about having stickers with the slogan 'Freedom from pain: say 'yes' to palliative care' on thousands of auto-rickshaws across the city? This idea germinated on a previous visit in a discussion between Nicholas and Bilu, a local leader of the auto-rickshaw driver's trade union, followed by blood sweat and tears and the partnership of Cancer Aid Society and Help Age India to make it happen which led to the pictures below. Community empowerment in action!!
Drs Biji and Chitra
This trip also allowed us to support training in several other centres. Dr Biji Sughosh, a former Diploma student, is now Associate Professor at the Malabar Cancer Centre in Northern Kerala and led a great 2 day Toolkit training programme with 3 of her former teachers: myself, Prof Rajagopal and Dr Chitra Venkiteshweren. I loved being back in the hot, humid, air of Kerala with some of my closest Indian colleagues. Well done Biji and to the young Director of the cancer centre for all you are doing to integrate palliative care and support patients and families.
CMC Ludhiana delegates
We then travelled to the far north to the Punjab where we gathered for the first 3 day Toolkit training at the renowned Ludhiana Christian Medical College. My thanks to Dr Pamela Jiraj from CMC and Dr Ed Dubland from Canada for their organisation. It was great to see the enthusiasm and vision of a wide group of staff and there is a desire for more. As a young doctor keen to have further training shared with us; 'I need to study with someone who can supervise and train me; distance learning is not enough’
Dr Shakeel and family
Faculty at Aligarh
Thanks to a cancelled flight the next visit was preceded by a hair raising and exhausting overnight drive through the Punjab, on through Delhi to the city of Aligarh. I arrived with only 5 minutes to spare before the inauguration of a one day palliative care training organised by Dr Hammad Usmani; a delegate at last year's Toolkit training in Lucknow. Dr Usmani is leading the new palliative care service at Aligarh Muslim University; a prestigious institution which is India's oldest Muslim university and has a a strong sense of service. It was great to see so many attend on a Sunday and to be joined by Dr Jo as well as colleagues Drs Shakeel and Sanjay from Lucknow and even Sr Shakila from Vellore. I think I managed to stay awake and give some useful teaching despite the lack of sleep! Remember these friends as they seek to develop palliative care in this setting. Have you followed the whirlwind trip round 4 Indian states, traveling by car, rickshaw, plane and train, meeting with friends and colleagues new and old and seeing palliative care established and grow? It was a huge privilege but also tiring so a brief trip to the beautiful Taj Mahal and a few days relaxing by the beach in Kerala was the perfect ending.
I am writing this from a snowy and beautiful Scotland where temperatures staying well below zero and the contrast dramatic with the equatorial warmth of Uganda.I made it home despite the travel chaos in the UK to celebrate Christmas with my family. I am listening to all the familiar lyrics that are piped through our store and struck by 'all I want for Christmas is......' What do you want for Christmas? For many many people their wish and prayer is for pain relief; for accessible and affordable oral morphine. The good news is that our Mulago team last Friday had its first new supply of oral morphine liquid with heartfelt thanks to Hospice Africa Uganda and our Cairdeas appeal. I would have loved for you to see the smiles and the genuine relief as we were able to take the lurid green liquid (dyed that colour) on our ward round. You can see the delight on the face of Jo (our clinical lecturer) Francis (Degree student on placement) and Micheala (Swedish consultant volunteering for a month) and one of our nursing team, Harriet. The situation is not fully resolved but we now have morphine powder in country and hope to have the new system fully functional very soon. It made a very good reason to have a slice of Chrsitmas cake. You can see the blackboard behind with many many names; our current in patient list. What kind of difference does oral morphine make for people in pain? Let me introduce you to Mr Sandrerson, a skilled tailor who is the chairman of the home based care volunteers for the Bangwe team in Blantyre, Malawi and whose home I visited recently. Working alongside the palliative care team these volunteers are key in supporting people in their own communities. "If we don't work together with the nurses how can we help our patients? If we see someone in pain and don't have any painkillers, don't have any morphine, then we feel we have let them down and get discouraged.' Let me also take you on a brief ward round in Mulago; first to the Burns Unit. Here patients can have unimaginable pain but the staff are experienced in prescribing oral morphine. However, with the recent shortage many many patients had no effective analgesia. Elizabeth tells a harrowing story of a family member deliberately sabotaging her paraffin with petrol leading to an explosion that seriously burned her as well as her daughters (2 and 11) She has been in hospital for 2 months already for treatment but her pain had been severe with very little help. Now is is under control and she smiled 'I so appreciate your team visiting and bringing me morphine; thank you.' Richard is in a bed outside the ward because of the crowding and is swathed in bandages. Most of all he is worried about his wife who was injured when petrol was poured over them both and set alight. 'I used to dread the dressings being changed but now I can manage because you have brought me morphine; can you check if my wife has morphine too?' Lets go on to the orthopaedic wards and meet Wesley too; he is only 13 and had had major surgery for a tumour on his arm. His eyes dropped when we asked him what it was like to have severe pain and no morphine; 'I had no hope' he said, and then looked up with a shy smile, 'but now I have hope'. I want to say a huge thank you for the support for our morphine appeal. We have almost reached our initial target and will be able to put any extra towards a scholarship to support the training of a nurse to prescribe morphine as part of our Degree programme. Thank you for helping us to bring hope to people like Wesley, Richard and Elizabeth. Whatever your are doing this Christmas and whatever you are longing for, we all at Cairdeas and in our team at Makerere university wish you peace and joy to you and yours; echoing the words of the angels that first Christmas; 'Glory to God in the highest; peace on earth and good will towards man.'
One of my great privileges is to be able to travel, share something of the work we are doing here, meet and learn from colleagues and offer mentorship and support. The Palliative Care Unit at Makerere is doing some ground breaking work and we were delighted to be invited to share in recent conferences and meetings. Cape Town saw the Primary Palliative Care Research forum; a group which seek to develop research to support 'all people having access to palliative care at all times and for all dimensions in all setting and in all nations'! An inspirational group of people and Drs Jo, Liz and I were delighted to share with colleagues across Africa as well as Canada, Australia, Belgium and Scotland and see something of the beauty of Cape Town. Can you see our good friend Prof Scott Murray as well as new friends Alan Barnard, Geoff and Ann Mitchell, Bart and Sophia. We then traveled to the 3rd conference of the Africa Palliative Care Association in Windhoek, Namibia. More than 300 people from 37 countries gathered to share the successes and progress across the region since the last conference in 2007; as well as look at the key challenges and opportunities ahead. The theme was 'Creativity in practice' and our team including our senior nurse, Josephine and we were all able to
present 6 papers and 1 workshop as well as meet up with some of our Degree students. One challenge shared by most countries is morphine consumption and availability as we know only too well here in Uganda. One speaker reminded us that the USA uses 250,000 times more morphine that Ethiopia; we were reminded that pain control and palliative care is a human right; a 'must have' rather than a 'nice to have'.
Back to Work in Uganda now after a whistle stop tour to the UK to meet supporters at our annual Cairdeas Gathering, celebrate our 5th birthday and share planning discussions with Trustees and other colleagues. We are delighted to have been given a grant by the Diana fund to support our research and training here in Mulago and also delighted to have Dr Jo Dunn and Dr Julia Downing (both pictured above) join us. Our team is growing and strengthening. Meanwhile our most pressing day to day challenge remains the lack of oral morphine. We are grateful for the help of Hospice Africa Uganda but we are all struggling to find ways to support our patients in pain until this crisis is resolved and morphine once again is freely available. I will use my next BLOG to tell you some stories and to properly introduce our Christmas appeal for oral morphine but for a preview there is a justgiving site. https://www.justgiving.com/cairdeas-morphine
Uganda 2010 was the catch phrase of the Gerard St baptist church team visit in August. Led by our pastor, Mathew Henderson and Sara and Tom Anderson 13 folk fund raised, planned and arrived full of enthusiasm and energy! Many were on their first visit to Africa and all were so keen to get involved and to share with people here. The aim of the visit was to see more of my work here but also to offer a blessing to me and my team, to patients and families, to children at a church holiday week. After a seminar to introduce the topic of 'spiritual care for the sick' along with my Mulago team and friends from church, they visited patients and families in Mulago Hospital and at home. It was not easy to see people who had so few resources and facing such difficulty but as ever there was tears and laughter, encouragement and sorrow and a sense of sharing together. They were warmly welcomed into my local church; Lugogo Baptist and learned to dance African style . They ate local food, sang on the minibuses, shopped in the markets, got sick, got better and all with the same enthusiasm and fun. A real highlight was a day offering support to a local slum community Naguru. The church has a number of links and members from here and we joined in a work party to clean out ditches, sweep with traditional brooms and watch an amazing bridge built. The latter replaced a rickety old bridge that had led to the death of a child
who fell off in a rainy spell. What a privilege! The church prayed that the bridge would also be a bridge between the communities and to God.
The Scots also took part in the children's holiday club with the Compassion kids, had radical haircuts,
hurtled down the Nile in rafts, discovered they liked matoke, spotted a lioness and spent a memorable couple of days in the beauty of Murchison national park. Most of all I want to thanks them for the way they listened and shared and even cried and prayed with our patients and families. They showed the common humanity we share and the value we give when we take time to listen and to offer care - but most of all to offer ourselves. Thanks you to each one of you; I know you have spoken of the life changing difference this trip has made in your own lives. I look forward to hearing more from you at the Cairdeas Gathering on October 30th in Aberdeen (more details on the website www.cairdeas.org.uk)
Firstly apologies for being so slow at posting once again. We will have a Facebook page soon and it should allow for a faster rate of news! These past few months have sped by as we worked hard to be ready for the next group of students on the BSc Degree. We had a further intake to Year 1 (Diploma) as well as the first Year 2 group (pictured on the left) . All the latter had already completed a Diploma in the past. What an inspirational group of students. They now represent 8 countries across the continent and have stories to tell of the sacrifices they have made to be able to take part on the course. One student from Zimbabwe shared how she had only received confirmation of her funding in the last week of her teaching month and had come to Uganda as a 'step of faith'. We have a mentorship programme to support the students and you can see me with my Year 1 Malawi students (Linly, Idah and Alex). Lameck is one of my Year 2 mentees and leads the palliative care association in Malawi and brings many years of experience. This is the first opportunity he has had to undertake a Degree level course and is already a leader for palliative care in his country. Notice the Scottish connection - a present from Highland Hospice on a previous visit. Elizabeth is from Nigeria and is the lead nurse at a major hospital. The faculty is led by the Director of Education at Hospice Africa Uganda, Flavia Bukandana and coordinated by Consilous who you can see here with Frida from my Mulago team and Francesca from Zimbabwe. We have a great team in partnership with Makerere University (especially our Palliative Care Unit) and the African Palliative Care Association. You can see Dr Jo with some of the men (Batholomew, Gideon, Willy and Alex). We also have a link with UK faculty via THET and it was a pleasure to welcome one of my old Scottish colleagues from Glasgow - Dr Mike Basler. He fitted right in!! We not only learned from each other with the students working hard for a long month but we also sang and danced and even paddled in Lake Victoria. Please remember these students as they are now back in their own countries studying at a distance and sending in their course work. At a social event in Dr Anne Merriman's home they symbolically lit one candle and gave it to her before each lighting in turn. Light spreading across Africa to bring relief to those in need. Let the flame burn brightly..... While we were welcoming the students I also had a wonderful team visit from Gerrard Street Baptist church in Aberdeen. This deserves a BLOG post all in its own right so will add very soon.
After some big challenges regarding permits and weather and illness the team of Grahame and Cheryl Tosh from the UK, Hamilton from Vellore and myself made it to the beautiful and remote state of Aizawl. Over an eventful 10 days we spent time with colleagues from Durtlang Presbyterian Hospital in Aizawl and Serkawn Baptist Hospital in Lunglei. The journey between the two places involves precipitous drops, hairpin bends, near misses, amazing views from tea stalls, stunning early morning mists, some travel sickness and even a beautiful waterfall on the way back. I have even found a mountain called 'leng' - maybe to climb on the next visit. We celebrated my birthday with typical Mizo breakfast and hours of singing! It was very encouraging to see how the principles of palliative care are being incorporated into these excellent hospitals. Dr Sanga at Durtlang has a significant role in caring for young men affected by substance misuse and there is an HIV/AIDS hospice aptly called Grace Home. Dr Lalramzauza, medical director of Serkawn, attended the Toolkit training last year along with the senior nurse tutor. They have formed a small palliative care team seen here and we had the privilege of meeting some of their patients. One very ill elderly man spoke of the incredible hope and comfort he now knows because of the touch of God in his life. We shared and prayed with him and his wife. Mizoram is a Christian state where church support is central to peoples lives. How is this for good advice in a prayer garden? It says 'Listen to God'.
Mizoram's monsoon kept us a few days longer than planned but I was able to visit Bangalore and take part in the first HIV Palliative Care course at St John's Hospital led by Dr Shoba Nair. It was great to teach with Prof Rajagopal again and to see the great work of Snehadan HIV center led by Father Matthew Perumpil.
Off to Delhi in the 45+ degree heat and on to Lucknow with our team for the first ever Palliative Care Toolkit training in Uttar Pradesh. Jo Dunn from the UK works with Hospice Africa Uganda and was on her first trip to India, Chitra is of course my dear friend and colleague and senior palliative care and psychiatry doctor in India and Nicholas Mellor from the Palliative Care Partnership joined us to see the Toolkit training in action. We worked with our local colleagues Sanjay Diraj and Shakeel Ahmed from SGPGI and Piyush Gupta and his team at Canceraids society. We had an amazing week. The participants were enthusiastic and open and shared so much with us as well as seeming to really gain from the training. They came from 6 institutions and organisations in Lucknow as well as other parts of the state. We were also able to raise awareness in medical institutions in Lucknow, hold a press conference, share with senior colleagues in Lucknow and Agra and meet some patients. The press conference achieved great media coverage and there are now many patients asking for help that is sadly very scarce in this huge state. As ever the needs are for continued support and mentoring but we wish all our participants every blessing as they seek to put their training into practice. here are a few quotes; 'It was excellent training and definitely it will be helpful to our work' 'I am really thankful to the organising committee for allowing us to be a part of this wonderful experience. I will do my best to practice my knowledge for the patients from today itself' India of course offers so much to tantalise the body and saturate the senses. We ate wonderful food; Mogul shami kebabs; creamy buffalo butter in buns, melt in the mouth samosa, succulent bamboo shoots from the mountains, crisp dosai for breakfast, sweet sticky jellabies, burning hot parenthe in the back streets of Old Delhi washed down with spicy chai. We experienced something of the ancient culture - not least the most famous monument to love, the Taj Mahal. Talking of culture; in the famous city of poetry, Lucknow, I had a poem written and recited to me by one of my students - in Hindi!
Many thanks for all the messages of encouragement about our Degree students. They are sitting exams at the end of their first semester and mostly doing well. We have now selected 20 more for the August intake with 8 countries represented; very exciting. I had the privilege of meeting up with 3 of our Malawi students on a recent visit. Let me introduce you to Davie Mpate. He is a clinical officer at Mulange Mission Hospital which nestled at the foot of the Mulange Massif. Davie became interested in palliative care through his work with HIV/AIDS and is brimming with enthusiasm. Here he is with the new vehicle for
home visits that has been bought by Hospice Africa UK. The small palliative care team see patients from a 40km radius of the hospital which also offers health care to very poor and rural villages. Presently there is no resident doctor at the hospital and it is clinical officers like Davie and nursing staff who do the majority of clinical work in many such centres. Davie is passionate about palliative care and supporting those in need and excited about the training opportunities offered by the Degree programme. It was so encouraging to meet him as well as 2 others students; Chris at Ndi Moyo in Salima and Fred at the paediatric wards in Queen's Hospital in Blantyre. Mentorship visits like this can be an important source of encouragement and support for students as well as giving us a real feel for the challenges and achievements of our students and I hope to be able to make such visits annually supported by Cairdeas. These students will be the leaders for palliative care and give us great hope for the future. I also had the chance spend a few days climbing Mulange (you can see why it is called the 'island in the sky') and then relaxing by lake Malawi with my friend Geoff. What an amazing privilege to be able to explore such beautiful places.
Back in Mulago we have been busy with the undergraduate and postgraduate exams with a communications exam included for the first time. Our clinical team is busy with increasing numbers of referrals. Let me introduce you to a young woman we met recently on the wards.Angela has a bone disease that means she is liable
to fractures and recently broke her hip which cannot be mended surgically. She is in constant pain and her family were praying they would find some help. When our nurse Regina came the next day and was able to give support and prescribe oral morphine Angela slept for the first time in weeks. What a difference yet morphine is not available to so many millions and even in Uganda we are struggling with a regular supply and in serious risk of running short this month. Angela could not thanks us enough and despite her continuing pain and
disability she has such a grace and peace. Her mother cried as she shared about their fears and Angela's courage and again thanked the 'angels who helped in their hour of need' . Here is Angela sharing some verses from Psalm 41v1-3 which talk of the blessings for those who help the sick and the protection and healing that comes from God. We left her room encouraged and humbled. Thanks as ever for your support. I am back to India soon to follow up on previous visits and of course see great friends and colleagues, eat spicy food and gaze at the mountains of Mizoram once more.
Is there anything more rewarding than mentoring and supporting committed, enthusiastic, compassionate colleagues and seeing them grow and develop? It is perhaps the greatest gift we offer in Cairdeas and one of my personal privileges. The new BSc in palliative care has been long been a dream, had a tricky and demanding gestation. But finally we have our 'Degree for Africa' and the prospect of training many many future leaders for palliative care in Africa. Here is a truly inspiring group of palliative care colleagues. Some are part of the team from Hospice Africa Uganda and Makerere University who have developed and now teach this new Degree programme. The rest are some of our first group of 21 students who started year 1 in February. They come from Uganda, Kenya, Namibia, Malawi, Swaziland and Tanzania. We have mothers, poets, government workers, mission hospital staff; they speak different languages and come from different cultures; yet all have such a commitment to learn and to make a difference for the many many who are in need in their countries. They have completed an intense 4 weeks of face to face teaching and now have gone back to their own countries to work at a distance completing assignments and exams and then clinical placements. Those leaving after Year 1 with a pass will be awarded a Diploma and others will stay on till Years 2&3 to complete their BSc. We have a further 13 coming straight into Year 2 in August who already hold a relevant Diploma. What an exciting opportunity for all of us! Here are the 5 students from Malawi where palliative care developments go from strength to strength. Do you like our team tee-shirts? I think wee Hannah is a bit too young for now. Why do we need this Degree? The majority of those in need in sub-Saharan Africa who face life limiting illness with pain, distress, loneliness and financial desperation do not have access to help. Most will not be able to have even basic pain relief with oral morphine. Families will struggle without support. These students and all those they in turn will teach and train will help to make a difference; please pray for them.
One last visit for this post. I have not only the privilege of seeing students train but also to be able to support and offer expertise to more senior colleagues. A fascinating conference recently in Riyadh, Saudi Arabia brought together many from across the Arab world as well as international experts form the WHO, USA, UK, Europe and yours truly! This Initiative to Improve Cancer Care in the Arab World (IICCAW) had the ambitious aim of eliciting the current stare of services and planning and brining together a strategic planing process for the next 10 years. We worked hard and there were impressive results - now to put it into action. I was especially pleased to meet palliative care colleagues from Saudi Arabia, Jordan, Sudan, UAE, Qatar, and interested others from a wider field. Riyadh is a very different place; full of the usual warm open Arabic hospitality yet also seems a world apart. It is respectful for women to be covered in public so I had my first experience of wearing an abayah. Who would have thought!
How did your new decade begin? I was privileged to be exploring the south west of this beautiful country then down into Rwanda. Beautiful Lakes Bunyonyi and Lake Kivu, paddling in a dugout to church, climbing cloud covered Mount Muhavuru volcano to almost 4000m, exploring Ishaha national park with tree climbing lions, hippos, buffalo.....Living and working here in Uganda is a real privilege. My thanks to my friends and colleagues who share this journey with me and who inspire and encourage and who share the laughter, the tears and the joy.
Back from my holiday it was down to work to prepare for the launch of the Degree programme at Makerere and Hospice Africa Uganda then off to India for a whistle stop trip. Delhi was cold for a lass from Africa! I was delighted that Ruth Wooldridge, an experienced palliative care nurse who has helped develop palliative care services in many countries including Delhi and Nairobi (as well as a friend), joined me for a mentoring visit in partnership with Pallium India. After a great day at the Cansupport foundation training course in Delhi we traveled to Lucknow in Uttar Pradesh.
We joined the team at Canceraids society and at Sanjay Gandhi Postgraduate Institute to review the progress since my last visit 6 months ago. The clinic was steadily growing with good relationships across the hospital and with current training of a nurse there will be better support for Dr's Shakeel and Sanjay. We were delighted to meet another nurse who has experience in palliative care and who immediately volunteered her help. Canceraids society has finished the building of a day care centre and now planning the service. We also saw real progress in encouraging others to develop palliative care and visited the medical colleges in Lucknow and Kanpur. There is such huge need in this state; 160 million people, a handful of places where oral morphine is available, rural agricultural economy with the majority living below the poverty line and so few palliative care developments as yet. We are planning to continue our mentorship and training support. In Kanpur I saw my first glimpse of the holy river Ganges - here a silted, sluggish brown shadow due to industrial pollution. Lucknow is an ancient and beautiful city and we sampled the architecture old and new and the food delights. If you visit make sure you taste malai mukkan and the chhappan bhog sweet shop!
Off to the warm south and a brief visit to my friends at CMC Vellore. I stayed at Sneha Deepam in the hospice and education centre and reminisced about being the first faculty to stay here. The gardens are now grown and beautiful and the service to many of the poorest continues to grow.
It is especially exciting to see young colleagues and former students grow and flourish. Bangalore is seeing growth and development in palliative care and the new head of department at St John's College is Dr Shoba Nair. With sincere and interested support from the management in this prestigious institution this enthusiastic department are developing training for HIV and palliative care as well as providing a clinical service. I took part in a writing workshop with Dr Chitra Venkiteswaren and others and gave an invited lecture. Then there was wonderful times of sharing with colleagues and friends across Bangalore, seeing 2 other former students, Dr Praveena and Dr Ravi Livingstone, now leading services in other hospitals and enjoying wonderful Kerala hospitality with Shoba's family.
On to the VXVII IAPC conference in Tiruchirapalli, a south Indian city full of ancient temples and Tamil history. With the overall theme of 'Twilight years' we looked at the particular problems of the elderly as well as sharing what has been happening across India. As ever I was overwhelmed by the warmth of the welcome, the wonderful food, outrageous compliments when wearing a sari and the inspirational commitment of my Indian colleagues. It has been a joy to see the growth and developments over the past decade and a privilege for myself and Cairdeas to be able to continue to support for this new decade. India has still so much need for many many of its people who live and die in preventable suffering and pain. Come to India sometime with me and be inspired, challenged, intoxicated - I promise you first visit will not be your last. Back now to Uganda for th start of the Degree programme - and that will need to wait till my next post.
Listening to my neighbours singing carols round my door last night made me nostalgic for frosty evenings, Christmas trees straight from the forest, sparkling lights in the early darkness, the eerie stillness of snow falling and time to celebrate with friends and family the wonderful joy and hope of Christmas. Maybe I am overlooking the busyness, shopping frenzy and choked roads though the latter is very much a reality here in Kampala. Uganda loves Christmas and there have been slightly strange Santas and endless carols in the supermarket for some weeks now. Hospice Africa Uganda hosted a wonderful Christmas party for patients attended by many friends including the Irish ambassador shown here with Dr Anne. The children had a crazy time on the bouncy castle which kept threatening to deflate - something to do with the hoards of kids all jumping at once. You may remember the story I told of a young woman from Congo called Josephine who features in my last BLOG post. Here she is enjoying the celebrations with her family and she sends her love to all the Cairdeas family. These past few weeks have been busy with visits to Tanzania and Sudan for cancer conferences. There is more and more interest in developing comprehensive cancer control programmes and integrating palliative care. Governments are becoming involved as they realise that non-communicable diseases such as cancer will become major threats to health in the African region over the next few decades. Francophone and North Africa have new initiatives to develop palliative care and it was inspiring to spend some time in Kampala with colleagues from Senegal, Egypt, Morocco and Sudan. It can be a tremendous encouragement and support to meet like minded colleagues who can advise and support and it is a huge privilege to help in this way. This photo shows the small palliative care delegation at the Sudan conference; Dr Nahla from Sudan, Esther a UK nurse working in Sudan, Dr Omar Shamieh from Jordan and working in Saudi Arabia and yours truly.
Back in Kampala we are hard pressed to finish the planning for the degree in palliative care but it has been great to have some volunteers and visitors to our team. Dr Jo over from the UK for a year, Willemien from the Netherlands, Dr Elaine from Ireland and others from the USA and beyond. They bring energy, skills,love enthusiasm, ideas and fun. Thanks to all. So what are some refections at this festive time. There are the panoramic pictures in my mind of Khartoum at sunrise overlooking the confluence of the White and Blue Niles, the beauty and tranquility of the Indian ocean and joining with over 700 delegates in Tanzania to fight cancer. Then there are the intensely private moments we are privileged to witness and share; 16 year old Viola pictured here, very ill and telling us how much she loves her jaja(grandmother); singing a favourite hymn on the ward with Jackie, a young mother, sharing a cuddle with Ben who is 5 and enjoying the party; listening to Joyce's father tell us how much he will miss her; making sure Annet will get her pain controlled and get home for Christmas; seeing Josephine's beautiful smile despite her uncertain future. We celebrate the Prince of Peace coming into a hurting and needy world with a message of love and hope for all peoples. Thankyou so much for all your love and support and wishing you a wonderful Christmas. www.cairdeas.org.uk for more information and to sign up for regular updates.