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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.



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