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UCI-PCAU JOINT CONFERENCE 2017

Cairdeas
29th September 2017

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.

UCI-PCAU JOINT CONFERENCE 2017

PCAU and UCI joint logos

UCI-PCAU JOINT CONFERENCE 2017

Mwazi Batuli.happy birthday

UCI-PCAU JOINT CONFERENCE 2017

Ivan, Toko and Mhoira with Sanyu team volunteering poster

UCI-PCAU JOINT CONFERENCE 2017

Julia being presented with her award

UCI-PCAU JOINT CONFERENCE 2017

Jennie and Toko managing the stall

UCI-PCAU JOINT CONFERENCE 2017

Grace helping students join IAHPC

UCI-PCAU JOINT CONFERENCE 2017

Nurse leaders

Happy as pigs in muck

Cairdeas
6th September 2017

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 
 

Happy as pigs in muck

Sanyu team

Happy as pigs in muck

International colleagues joining Sanyu team

Happy as pigs in muck

Growing, happy pigs ?Catriona

Happy as pigs in muck

Site visit

Happy as pigs in muck

Wonderful, faithful Senga

Happy as pigs in muck

4 and counting

Happy as pigs in muck

Toko, Ronald and Christine; thanks UCT for all your support

Mauritania; understanding rural communities and palliative care

Cairdeas
15th July 2017

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..

Mauritania; understanding rural communities and palliative care

Nouakchott beach

Mauritania; understanding rural communities and palliative care

Presenting the certificates

Mauritania; understanding rural communities and palliative care

Smiles and certificates

Mauritania; understanding rural communities and palliative care

Active participation

Mauritania; understanding rural communities and palliative care

Great team work as trainers

Mauritania; understanding rural communities and palliative care

Sudan vs Mauritania football match..an unexpected addition to the trip

EAPC 2017 conference…..summer in Madrid

Dr Mhoira Leng
12th June 2017

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.

 

EAPC 2017 conference…..summer in Madrid

Warm welcome to EAPC 2017

EAPC 2017 conference…..summer in Madrid

Rosettes

EAPC 2017 conference…..summer in Madrid

Hamilton and our Indian colleagues with the prize winner Dr Lingagowda

EAPC 2017 conference…..summer in Madrid

African colleagues as the African Atlas is launched

EAPC 2017 conference…..summer in Madrid

Jack presenting his poster

EAPC 2017 conference…..summer in Madrid

Jack discovering seafood

EAPC 2017 conference…..summer in Madrid

Lucy presenting our work

EAPC 2017 conference…..summer in Madrid

Lucy and Jack and their proud mentor

EAPC 2017 conference…..summer in Madrid

Beauty in Sagrada Familia with Jack, Nahla and our Sudanese friends

Integrating palliative care…impressions from Joyce and our link nurses

Cairdeas
26th May 2017

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.'

 

 

 

Integrating palliative care…impressions from Joyce and our link nurses

Original link nurse training group 2011

Integrating palliative care…impressions from Joyce and our link nurses

Josephine Kabahweza, our first link nurse mentor

Integrating palliative care…impressions from Joyce and our link nurses

Link nurses in Baptist Christian Hospital, Tezpur, India

Integrating palliative care…impressions from Joyce and our link nurses

Teaching sessions

Integrating palliative care…impressions from Joyce and our link nurses

Jane

Integrating palliative care…impressions from Joyce and our link nurses

Irene

Integrating palliative care…impressions from Joyce and our link nurses

Florence from MPCU; our Kirrudu Hospital mmentor

Ready for Africa??? Reflections on spirituality

Cairdeas
24th April 2017

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.

Ready for Africa??? Reflections on spirituality

Busy traffic in Kampala definitely trumps London

Ready for Africa??? Reflections on spirituality

Teaching the basics of palliative care to our Sanyu team from Lugogo Babptist church

Ready for Africa??? Reflections on spirituality

Always holistic discussions on ward rounds; physical, social, psychological and spiritual

Ready for Africa??? Reflections on spirituality

The colours of the patients clothes really brightens up the wards..and how about that smile!

Ready for Africa??? Reflections on spirituality

Lugogo BC celebrations over Easter

Ready for Africa??? Reflections on spirituality

Our MPCU team showing off their gomesi on the way to Grace's weding

Ready for Africa??? Reflections on spirituality

Sunrise over Queen Elizabeth National Park. I think I've fallen in love with Uganda

India; first impressions and IAPCON 2017

Cairdeas
4th April 2017

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.'

India; first impressions and IAPCON 2017

Arulmigu Patteeswarar Temple in Coimbatore

India; first impressions and IAPCON 2017

Tea plantations in Ooty

India; first impressions and IAPCON 2017

Ooty town

India; first impressions and IAPCON 2017

Mountain views

India; first impressions and IAPCON 2017

Liz presenting

India; first impressions and IAPCON 2017

Liz in saree...sorry photo not aligned!

India; first impressions and IAPCON 2017

Liz with Julia Downing, Mhoira Leng and Brett Sutton

India; first impressions and IAPCON 2017

Mhoira with our poster on the impact of the MPCU research strategy

India; first impressions and IAPCON 2017

Hamilton Inbadas; Cairdeas Trustee presenting a great plenary on 'Philosophical and cultural situatedness of spirituality in palliative care.'

India; first impressions and IAPCON 2017

Dr Savita from EHA giving such a moving talk about transgender issues and palliative care

India; first impressions and IAPCON 2017

Dr Balaji (conference organiser) and our good friend Dr Chitra Venkateswaran who was such a great scientific chairperson.

The Religions of the World Charter for Children’s Palliative Care; a ground breaking initiative.

Cairdeas
11th March 2017

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. 

The Religions of the World Charter for Children’s Palliative Care; a ground breaking initiative.

Scottish parliament building

The Religions of the World Charter for Children’s Palliative Care; a ground breaking initiative.

The Religions of the World Charter for Children’s Palliative Care; a ground breaking initiative.

Charter and original signatures

The Religions of the World Charter for Children’s Palliative Care; a ground breaking initiative.

Dr Elizabeth Swain signing on behalf of CairdeasIPCT

The Religions of the World Charter for Children’s Palliative Care; a ground breaking initiative.

Andy Wightman, MSP, signs charter

Hidden lives, hidden patients; refugees

Dr Mhoira Leng
24th February 2017

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'......

Hidden lives, hidden patients; refugees

IUG students

Hidden lives, hidden patients; refugees

Mural by Banksy on dividing wall in Bethlehem

Hidden lives, hidden patients; refugees

Ward rounds IUG

Hidden lives, hidden patients; refugees

Teaching fellows and faculty

Hidden lives, hidden patients; refugees

Class of 2016 palliative care

Hidden lives, hidden patients; refugees

Beauty in the desert

Hidden lives, hidden patients; refugees

Jerusalem prayer

Medicine for Investors

Cairdeas
11th December 2016

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.

Exit Strategy

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.

Ownership

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!!

Medicine for Investors

First time for Jared in the southern hemisphere

Medicine for Investors

Thanksgiving at church; giving pregnant rabbits who are now multiplying!

Medicine for Investors

Historic events as the Cranes get through to the Africa cup first time in ?60years

Medicine for Investors

Bex and Jared as part of the MPCU football team at the PCAU tournament to celebrate World Hospice and Palliative Care Day

Medicine for Investors

Enjoying the beauty and diversity of Uganda; the 'Pearl of Africa'

Medicine for Investors

Still time to contribute; click on our donate button

Christmas support!!!...buy a pig, support a volunteer, enable scholarships

Cairdeas
29th November 2016

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 operations@cairdeas.org.uk so we can acknowledge your gift and also send you progress update and a photo!! 

Christmas support!!!...buy a pig, support a volunteer, enable scholarships

Working together with your help

Christmas support!!!...buy a pig, support a volunteer, enable scholarships

Our wonderful volunteers including Ronald

Christmas support!!!...buy a pig, support a volunteer, enable scholarships

This is how our pigs will look!

Christmas support!!!...buy a pig, support a volunteer, enable scholarships

Esther and her story

Christmas support!!!...buy a pig, support a volunteer, enable scholarships

How to support us.....

Mentoring in Uganda

Cairdeas
16th November 2016

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.'

Thanks so much Berit; haste ye back!!!

Mentoring in Uganda

Berit

Mentoring in Uganda

APCA 2016 Kampala

Mentoring in Uganda

Jinja

Mentoring in Uganda

Nuts

Mentoring in Uganda

Thanksgiving

Mentoring in Uganda

Dugout

Tales from Mauritania and Cairdeas Sahara

Dr Mhoira Leng
31st October 2016

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.



 

Tales from Mauritania and Cairdeas Sahara

Aisha

Tales from Mauritania and Cairdeas Sahara

Palliative care training

Tales from Mauritania and Cairdeas Sahara

Donkey transport

Tales from Mauritania and Cairdeas Sahara

Sahara meets the ocean

“I’m not a medic, but I can help” - Thoughts on my volunteering experience

John Howlett
16th October 2016

              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.

Cheers, John

“I’m not a medic, but I can help” - Thoughts on my volunteering experience

The Team

“I’m not a medic, but I can help” - Thoughts on my volunteering experience

"Can you help me with Skype?"

“I’m not a medic, but I can help” - Thoughts on my volunteering experience

Bex, Jared, Ivan, Me and Lucy at APCA Conference 2016

Sharing the vision

John Howlett
28th September 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."
 

Sharing the vision

Dr Gursaran Purewal and Florence

Sharing the vision

Photo with Ivan and our Cairdeas Trustee Jacqui MacIntosh

Sharing the vision

Ester

Sharing the vision

Graduation Celebrations

Welcome back to Cairdeas.org.uk

John Howlett
15th August 2016

 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.

Thanks

Cairdeas

Transforming practise; transforming lives; transforming societies

Dr Mhoira Leng
1st May 2015

Degree students visiting MPCU
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 I was 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....'


Soul’s worth

Dr Mhoira Leng
19th December 2014

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
Moolchand parantha
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
Kerala beach
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. 

Refreshment in a dry land

Dr Mhoira Leng
29th September 2014

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 

Daily life in Kampala

Dr Mhoira Leng
23rd May 2014

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.

Odisha experience, chilly Delhi and Assam adventures

Dr Mhoira Leng
23rd March 2014

Mentorship participants
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.
Ivan
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. 

Angels

Dr Mhoira Leng
26th December 2013

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
Wishing you 2014 full of hope.



WWLD and WWJD

Dr Mhoira Leng
14th November 2013

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 Jesus do. 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.'
 

Inspiring leaders

Dr Mhoira Leng
22nd October 2013

Amazing LDI family
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'.

Tastes of heaven; part 2; west african spice

Dr Mhoira Leng
30th July 2013

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.

Tastes of heaven; part 1

Dr Mhoira Leng
29th March 2013

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. 

Love feasts and other Christmas traditions

Dr Mhoira Leng
22nd December 2012



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

Giraffe mobs and other teaching tales

Dr Mhoira Leng
15th December 2012

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.

Multi-national Delhi

Dr Mhoira Leng
18th February 2012


EHA participants
Faculty
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.
Spcies galore
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.

sunset Lake Victoria on the way home

Learning by Degree

Dr Mhoira Leng
12th October 2011


2nd years at Mulago
2nd years at Mulago
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
Lois
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.'

Reflections in Africa

Dr Mhoira Leng
23rd July 2011

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.

India; whirlwind tour

Dr Mhoira Leng
20th March 2011

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.

Morphine for Christmas

Dr Mhoira Leng
23rd December 2010



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.'

Travels with Cairdeas

Dr Mhoira Leng
23rd November 2010

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



Scotland meets Uganda

Dr Mhoira Leng
20th October 2010


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)

A ‘Degree for Africa’ reaches further

Dr Mhoira Leng
24th September 2010

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.

Monsoon and mentoring

Dr Mhoira Leng
10th July 2010

 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!

Hope and courage

Dr Mhoira Leng
4th June 2010

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.

Building for the future

Dr Mhoira Leng
31st March 2010


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!

A beautiful world

Dr Mhoira Leng
21st February 2010

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.

Christmas in Africa 2009

Dr Mhoira Leng
15th December 2009

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.
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