Christmas in Africa 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.
www.cairdeas.org.uk for more information and to sign up for regular updates.

Discovering your voice

'God is merciful and will help us.'
Let me tell you Josephine's story. Living in Goma, eastern Democratic Republic of Congo(DRC, her life has been surrounded and affected by the terrible conflict that has torn apart that whole region. She and her husband Celeste made the difficult decision to flee becoming refugees only when their oldest two children and severalfamily members were killed in an outbreak of violence. Arriving destitute in Uganda they lived in a refugee camp close to the DRC border till they were able to get jobs and begin to rebuild their lives. Josephine was working as a teacher and they all learned the local language. Their family knew peace for the first time only for Josephine to become ill with cancer. They took her to several hospitals until they reached Mulago cancer centre - in severe pain, distrssed and desperate. Celeste and the two children slept under her bed as they waited for news of treatment and for support from the UN High Commisssion for Refugees (UNHCR.
What could we do to support Josephine and her family? What helps them to cope with this new tragedy? Her pain is now controlled and treatment for her cancer started.We have found translators so we can listen to her worries and concerns. UNHCR have found accommodation for the family in Kampala though the fees are still to be paid to allow her chldren to go back to schhool. She talks of her worry for them then says with calm assurance and grace 'God is merciful and he will help us'
This year's World Hospce Day is about 'Discovering your voice' - telling the storeis of those who are suffering and listening to what they are saying. A recent presentation reportered in the African Palliative Care Association newsletter http://www.apca.co.ug/talked of an African palliative care patients 'bucket list'. What would and do people ask for from those who will listen?
1. freedom from pain and symptoms
2. enough decent-quality food
3. family and community support
4. secure future for their children
5. adequate resources to address their illness
6. scale-up so that such care would be available to everyone suffering in a similar way in Africa.
Dr Faith Mwangi Powell

Let us listen to Josephine and to many others. Also let us be humbled and inspired by the courage and faith we are pivileged to see so often in patients and families. Thank you for your support for our team in Mulago and for so many others who are seeking to work to make a real difference. It has been so encouraging to meet with many of you these past 2 weeks and share in the work of Cairdeas.
One final comment from Josephine; 'Will people in your country be interested in my story?

mountains and spices

Greetings from India. As I write this I am preparing to leave the 40 degree heat of summer in Delhi for the relative cool of Kampala. It has been an amazing month and many thanks to all who have been supporting and working with me this visit.
First stop was the beautiful, remote and mountainous state of Mizoram.(Far North East of India between Bangladesh and Burma) Following ascoping visit a year ago I was back with a team of expert faculty (Dr Grahame Tosh from Southend, Dr Chitra Venkateswaran from Kochi and Dr Shoba Nair from Bangalore)at the invitation of Dr Jeremy Pautu from the Civil Hospital, Aisawl. They have started the first palliative care clinic in Mizoram and our visit was aimed to raise the profile of palliative care, support the development of strategic planning for palliative care and run a state wide training using the Palliative Care Toolkit. 2 weeks flew by with every day another amazing vista to feed our souls. We were able to meet with colleagues from hospitals, community groups, churches, an eminent theological college and government. The state health minister not only met with us but also inaugurated our training course. It was very encouraging to see how many took the concept of palliative care to heart and wanted to 'discover their voice' and the voice of those in need with no access to help. Comments from the 24 delegates included 'this was the best course I have attended' and 'this will help my practise from tomorrow'. They committed to taking their learning and experience into their workplaces and there were 2 hospitals committed to developing palliative care service in addition to the existing civil hospital clinic. Please remember these colleagues and friends as they grow and develop. We have prepared a draft strategic 5 year plan and there is much to think about and accomplish. We were also so touched by the strength of community and caring for others. There is a Mizo phrase 'tlawmangaihna' which translates as service to others and is a philosophy for Mizos every where. It is humbling to see so many signs of this sacrificial caring.

Back to Delhi and an overnight train to the far south of Uttar Pradesh. This state is home to 3% of the worlds population(180 million)60% of whom live below the poverty line. I was visiting a small rural hopsital in Lalitpur at the invitation of Dr Anne Tyle of EHA. Emmuanual Hospital Association is a non-governmental Christian network of 20 hospitals and 30 community projects accross the north of India and with a vision to reach the poorest in rural areas. They have recently committed to developing palliative care programmes and Lalitpur is planned for one of the first services. It was great to meet the dedicated team here and offer some encouragement and advice. I very much hope Cairdeas will be able to work in partnership to support this initiative.

Lucknow, the capital of Uttar Pradesh was my next visit; this time representing Pallium India as well as Cairdeas. There are very few palliative care services in UP but over the past couple of years there is a new energy and will to see a change. I visited one of India's foremost postgraduate institutes, the Sanjay Gandhi Postgraduate Institute, which has a palliative care programme running for only 2 months. Many colleagues showed an interest here and in the King George Medical College. In between I visited a dynamic Indian NGO, Cancer Aid Society which is leading the drive for oral morphine availability and met a senior official in the excise department. Lucknow is a beautiful and ancient city and hopefully will also become a training centre and focus for palliative care. The people of UP so need and deserve this help and support.

Seeing India throught the eyes of my niece Sophie and her friend Hazel was a real privilege. They are volunteering at ASHA; an amazing community empowerment project in the slums of Delhi. In between work we managed to travel on trains, cars, elephants and planes and to visit the pink city of Jaipur, the breathtaking Taj Mahal, the misty Himalayas and explore sweltering Delhi. My trip culminated in sharing with the girls and all at ASHA the celebration of 176 students from the slums gaining places at Delhi University and other institutions. An amazing achievement which speaks of the resilience and hard work of the students, the long term support from ASHA and the tremendous potential of India's human resources. The home minister of India and many other international guests celebrated the event. We wish all the students every blessing from Cairdeas.

Patients and patience

As the weeks roll by it is such a privilege to see our team grow and develop in Mulago Hospital and to see more and more patients have care and support. Many of you have said you like to hear the stories and sense the atmosphere so I will take you on another brief round.
Lets meet Mugambwa who is soon to go home after 3 months in the orthopaedic ward supported by our team and by Hospice Africa Uganda. He is unfailingly cheerful despite having cancer for many years which recently meant 4 operations (2 on each leg) and without anyone to care for him or prepare food. He now is pain free and delighted with his new wheelchair. Challenge; how do you go uphill without tipping over backwards a problem he dramatically demonstrated to us. Some quick thinking and advice to lean forwards (and have someone behind!)he makes it up the slope at last. Sometimes it is simple solutions that make the biggest difference. Joseph has so many sores he cannot find a comfortable position and simply tries to lie as still as possible. In the UK we would have sophisticated wound dressings and special pressure relieving mattresses. However, some basic advice, instruction for his mother, help to supply dressing materials, ground up antibiotic powder sprinkled on the wounds and the use of surgical gloves filled with water to relieve pressure made a huge difference. 'I am feeling a bit fine and there is no paining' he told us. This elderly man has been receiving extensive treatment for his cancer having travelled overland from Bukavu Hospital in eastern Congo. He is about to start radiotherapy but they had run out of money for food unless a cow can be sold back in Congo and the money sent over! Thanks to a generous donation we are able to help with these practical needs
Numbers being referred continue to increase and the team can feel under pressure both to care for patients as well as carry out research, develop the service and offer teaching. Our office is a real blessing even if pretty cramped at times. Here is the team celebrating my birthday.
Time away is also important and my non-swimming colleagues were brave enough to go on an outing to Lagoon Resort on the shores of Lake Victoria.
What news of the planned BSc in palliative care? The team at Hospice and Makerere have been working hard and we are in the process of admitting students but due to a number of factors we start the course in Feb 2010. It is a little disappointing but also will allow a more prepared start to this exciting programme.
Our research agenda continues to develop with completion of a long planned piece of work to find out the needs patients have in Mulago. Building capacity for research is key and we were delighted to welcome Prof Barbara Jack to support nurse training in qualitative research. The day was a great success and we hope to develop this collaboration.
My next post will be from India as I leave tomorrow for a teaching visit. We will be carrying out a state wide training in Mizoram as well as other visits. I am dreaming of that first dosa!

research news

Why is research a priority for the Palliative Care Unit at Makerere? You may think we should be focusing on looking after patients and training students. However much needs to be done to ensure we are making a difference. We need to examine the process and determine the needs and priorities.We must listen to the patients and family perspective and find ways that support quality of life yet can be sustainable and accessible. We need to help build credibility among health policy makers and clinicians. It was with great pleasure that we welcomed Prof Scott (Primary Palliative Care at the University of Edinburgh) and Mary MurrAy on an expert visit. They encouraged us in many ways and helped to launch our Palliative Care Research Network at Makerere. We were delighted by the response from the university, ministry of health other colleagues and students. Scott and Mary also managed quick visit to Jinja and the mighty Bujagali falls. Here are some reflections from Scott; 'My wife Mary, a GP with a special interest in palliative care, and I recently had the privilege of spending a week with Mhoira in Uganda supporting the developing palliative care work. We spent time with the Mulago Hospital palliative care team on ward rounds, when they assess various patients to improve their pain symptom control and offer emotional support. The patients who receive this care are universally very appreciative. I spoke at a large hospital medical meeting to highlight the potential of this great new service, and highlighted this is an approach which is well accepted internationally.
At the university Mhoira introduced us to the Dean and various other key leaders in developing palliative care as a specialty. We held the inaugural meeting of the University Palliative Care Research Network, and leaders from Hospice Uganda and APCA attended to draft up a research agenda for the coming years. I also helped Mhoira and her colleagues run a workshop in research methods in which local doctors and nursed identified a number of projects to take forward, some with national and international collaborations. The University is very keen to establish a strong research base.
Finally we visited Kitovu Mobile Home Care Programme to conduct an evaluation of the palliative care services there for the Diana, Princess of Wales memorial fund. That dedicated team offer oral morphine to control pain, which gives unspeakable relief to many suffering from cancer and AIDS. They also give food, counselling and spiritual support that many may live as well as possible despite their progressive illnesses.' These visits were down bumpy, dusty roads for many miles across 3 ditricts and are the only way people receive palliative care at home. Here is Richard sitting in his simple home which was rebuilt after a storm. He is no longer working as a policeman but still tries to offer some income support while his young family attend to the farming.
What a difference it makes when we have services like Kitovu mobile to refer to when going home from Mulago. It is so hard for the team when we cannot offer a patient a realistic hope of receiving care at home - sadly still the case in many parts of Uganda.

first post of 2009

Standing at the equator on March 21st with the sun directly overhead casting a tiny shadow reminded me of time passing. It has been too long since my last BLOG post and now so much to tell...so I'll make a start. 2009 began for me in Manchester then on to Southend and London; after spending a lovely Christmas with family and friends in Glasgow. Here is my niece Naama with her own baked Christmas biscuits. All too soon I was leaving the snow and ice for the sunshine of Uganda then on to India. Imagine swimming in the Arabian Sea as the sun sets over an empty Keralan beach. There was time to see my colleagues and friends in Pallium India including a Scottish doctor Dr Tom Middlemiss who is spending a year with the team. It was great to visit their new facilities and hear of plans to open an in-patient unit very soon. Time also to eat spicy fish curry, firey sambhar and crisp dosa before travelling north to take part in the IAPC (Indian Association for Palliative Care) 16th conference in New Delhi entitled 'Freedom from Pain'. Our host Dr Sushma Bhatnagar with her team at AIIMS delivered a great conference with over 600 delegates. I was privileged to give a paper on 'Opioid availability in sub-Saharan Africa'. We also took part in a walk to raise awareness of cancer held by Cansupport and graced by the prime minister's wife. The IAPC is growing and developing though there is still much to be done. The nearest state to New Delhi is Uttar Pradesh which is home to 3% of the worlds population yet has virtually no palliative care provision!
One ray of hope comes from the Emmanuel Hospital Association; a network of rural mission hospitals across mainly the north and east of India. Dedicated staff offer care to the marginalised and poor in India including an HIV/AIDS project in Delhi; Shalom. Dr Ann Thyle is leading the plans to develop palliative care programmes and it was a privilege to be faculty for the first training course led by Dr Ed Dubland from Canada. The small team are enthusiastic and already committed to holistic care.Integrating palliative care will make a real difference to so many and we may be able to help with these developments in the future.
Back in Uganda now with lots to report - but it can wait till the next post...