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.

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.