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.'

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. 

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'......