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...

Christmas greetings 2008

Sharing a Christmas party with patients and staff at Hospice Africa Uganda was a moving and fun experience. Staff had practised for a few weeks to sing carols in English and Luganda - and the 3 foreign members seemed to pass the test. I think my Baganda dancing needs much more practise in bottom wiggling - though I was given a round of applause for trying! Many patients were too ill to do more than lie on their mattresses and observe but others sang, danced, ate and showed their desire to live life to the full. For me the most moving moment came when a young girl asked 'Will you meet Christ this Christmas?' then sang so poignantly of her Saviour. Perhaps a question we all can ask of ourselves.
I am writing this from Uganda but will be travelling back to the frozen north to spend Christmas in Scotland with my family. The first time in 3 years and will also allow me to meet my new nephew.
What of the past few weeks here in Kampala? It has been full of challenges, new friendships, frustrations, shared hopes and even some progress! The newly formed Palliative Care Unit is gradually gaining visibility and recognition in Mulago Hospital. Tomorrow we meet in our new office for the first time which is a huge step forward and answer to prayer. It is very small but central and will soon feel like home. Ward 4A first on the left if you are passing! We have agreed a new referral process, held 2 team away days, have weekly team meetings and ward rounds, joined a multi-disciplinary clinical meeting and formed initial collaborative working agreements with Hospice Africa Uganda. Most of all we have been able to care for the needs of many patients and their families.
Come on a round with me....first tackle the increasingly crazy Kampala traffic for an hour, pray it is not raining or the roads will flood and then pray again you can find a parking space. Having arrived on the ward, donned your white coat (very important here)and met with the team; nurses Josephine, Regina, Harriet and Frida and Dr Liz; let us see who is needing our help today. There is Swaibu, 26 whom many of you met through our recent mailing(see http://cairdeas.org.uk/alternative.htm), initially abandoned by his family with no one to meet his most basic needs in hospital and crying in pain. When the porridge arrived on the ward this hungry young man could get none as he was unable to walk because of the cancer and infection in his legs! After many weeks and many obstacles he has now been discharged to his sisters home having successfully started treatment. He says God has taken care of him and brought the PCU team to help him. Here he is reading Psalm 103. Or maybe meet Sharon, a 7 year old child from a rural village who is crying in pain and very frightened. Her cancer cannot be treated but we can help with her pain, support her young mother, make sure she can access help when she goes home and perhaps the sweetie and the colouring pens will bring back her smile. Next we will talk with Joseph who is 41 and is waiting for us with his family. We give them help to make decisions about his treatment and investigations, check his pain is still controlled and come to terms with the devastating diagnosis of liver cancer. We also need to work out how he will receive support when he goes home to the far east of Uganda. Fortunately there is a palliative care service in the nearby district. The majority of our patients come from outside Kampala and may not have any access to palliative care or oral morphine. Then there is Faridha, 23 who is semi-conscious with a severe headache caused by meningitis associated with HIV/AIDS. She lies on the floor and has no one to care for her or even to give her the morphine we can provide. Sadly there are many 'Faridhas' in Mulago.

Does that give you a taster? Next time I will introduce to you to more of our work and tell you about the other roles I have in helping develop research, supporting training, offering leadership to the proposed Degree in Palliative Care and so on.....have a wonderful Christmas with time to remember the Saviour who was born for each one of us.
What treats will you be eating? How about a Ugandan delicacy - freshly roasted grasshoppers collected by my neighbour Justine!

World Day

Greetings from the shores of Lake Victoria.
Many of you will have been involved in World Hospice and Palliative Care Day events across the globe. This year we joined together to promote palliative care and pain treatment as a human right. Please see the World Day website and the Cairdeas website for more information. Cairdeas had three main opportunities to share this message; a stall at the annual meeting of the Scottish Partnership for Palliative Care, the honour of a Civic Reception hosted by the Lord Provost of Aberdeen and an opportunity to address a cross-parliamentary group on palliative care and development at the Scottish parliament. Our thanks to all who helped make these events possible as we join our voice with those who often have no voice yet whose need is overwhelming; and addressing this need is offers both justice and compassion. Let us pray that the Declaration on Palliative care and Pain Treatment as a Human Right signed by so many will have an impact.
These past few months I have been in the UK meeting many colleagues and friends, working for a few weeks at Fairhavens Hospice in Southend(my thanks for your very warm welcome), taking part in planning meetings and supporting my family during my Mum's recent serious illness.
The focus of planning has been the new developments in Uganda and the exciting yet daunting challenges for us as we seek to work alongside our Ugandan colleagues to develop palliative care at Mulago Hospital. I will be telling you more in my subsequent BLOG posts but let our latest Cairdeas Consultant, Richard Gamblin, give you an introduction;
'Even after a lifetime in palliative care nothing prepared me to meet so many young people dying with AIDS and cancer. The four Mulago nurses scale of work is enormous; with so many sick patients who could benefit from their care. In the UK we take for granted so much. Patients in Mulago are not provided with bed linen, pillows, food or fresh water. Some wards have up to 40 beds another 40 patients lying on mats on the floor. The doctors and nurses are overworked and most care is provided by family members. Yet the nurses have achieved a lot by simple measures such as prescribing and administering morphine.' Richard was struck by both the very real physical needs but also the social burdens for children taking on parental roles (such as Hannah you see here, whose mother is dying), familes with little enough money for food let alone medical treatments, paucity of pain relief yet too was amazed by the warmth, dedication, faith and hope of patients and staff. In my next BLOG I will take you with my on a ward round to meet colleagues and patients at Mulago. Join me very soon and meanwhile please continue to support and to pray for us.

mizoram

Nestling amidst cloud covered mountains with roads clinging impossibly to the cliff sides, warm generous people with strong community, cultural traditions and Christian faith is the hill state of Mizoram. Despite 2 international borders and 3 state borders it's geography and history have kept a sense of identity and relative isolation. Food, ethnicity, dress, language, lifestyle, faith - all very different from the 'plains Indians'. Here the patients do not have the latest 20-20 cricket heroes on their wall but a photo of Manchester United!
It was a privilege to make a short visit as part of an on-going project with the Civil Hospital and Regional Cancer Centre in Mizoram and Pallium India. A Pain Relief and Palliative Care clinic (PRPC) began in the Civil Hospital, Aisawl in December 2006 and they have managed to provide oral morphine through this service. However, given the rural nature of this remote state, there is a need to further develop palliative care throughout the 8 administrative districts as well as provide a more comprehensive service in the capital Aisawl. There is a very high rate of cancer and a significant HIV/AIDS challenge.
My visit was hosted by Dr Jeremy Pautu and his small team, Dr Vani and nurse Puii who run the palliative care service and who received training from Prof Rajagopal and the Pallium India team. We visited the government offices, Civil Hospital, ART centre, Presbyterian Hospital and Shalom HIV/AIDS service. Our seminar on palliative care was warmly received and the standard of care offered with limited resources very humbling. It was also very clear that there is government support for palliative care and strong networks throughout the state.
To help you understand the challenges come with me on a journey from the capital Aisawl to the major town of Lunglei. Houses are built into the hillsides from the simple rural dwellings to the twisting, winding streets of the capital. Not a place for those made nervous with heights! At every turn is a stunning view and in every small town a tea stop for a hot, sweet cup of tingpui. An emphasis on fruit growing and lush soil provides vibrant markets and the beautiful weaving traditions is shown in the women's puan designs. At the end of a long hot day you arrive at Lunglei to be welcomed by the family of Puii, the palliative care nurse. My thanks to the Medical Superintendent of the civil hospital Dr KK Ghose and colleagues at the Christian Hospital Serkawn for showing us round the hospital. We were able to hold a seminar on palliative care and to meet many of the leaders of health care in this district.
What of palliative care here in Mizoram? We are looking to support development in a joint project with Pallium India. At present we are drafting a plan to offer training at community level, to support a cohort of trained trainers and to help with strategic planning. The existing clinic is only able to offer outpatient review and there is a need to develop a community based model to offer support in patients homes. In Aisawl we visited a young man with advanced cancer, looked after by his family who was not well enough to come to the hospital clinic. His family had cared for him with amazing dedication yet needed help and advice to manage his pain. This kind of support is not possible at present yet so clearly needed. I very much hope we will be able to visit with a team in January, and that the service will continue to develop so that many more will receive the care they need and deserve.

I take with me memories of crazy precipices, new and generous friends, amazing hills rolling into the horizon, inspiring colleagues, strong community support for the patients and families, Christian fellowship and the warm welcome of all shared with a cup of tingpui. It was an amazing place to spend my birthday - and my special thanks to Lalrinmawii (Teteii) for her wonderful Mizo feast!

social work consultancy - irene nicholson

We were delighted Irene was able to visit India and offer consultancy with her skills in social work. You can read her reflections below. She was able to do an amazing amount in a few months supporting colleagues in CMC, as well as taking part as faculty for the Refresher Course in Trivandrum and attending the IAPC conference in Kochi. At this latter event she helped facilitate the first national network of palliative care social workers. (an important moment captured here) Many thanks to Irene for her enthusiasm, commitment, willingness to try anything once! and for sharing her skills and her self. I know her contribution was very much appreciated by the CMC team - and by Cairdeas. Irene will be sharing more of her experiences at our annual Cairdeas gathering this weekend in Aberdeen

'I am Head of family Support Services at Grove House Hospice in St. Albans. My background is in Social Work, counselling, and training.
I was fortunate to be able to have the opportunity to work alongside the Palliative Care team based at the Christian Medical College in Vellore and also with the newly opened hospice from January to March. I spent time with the Social Worker there, Ramu. (pictured with me and Aneeja, social worker from Trivandrum below) He introduced me to Palliative Care Social Work in India, and we were able to work together as Social Work colleagues, sharing our knowledge and information. Mondays was “our” day, we spent the time doing planned visits to patients and families within a thirty mile radius of the hospital. We would take local buses to out-lying villages, often walking across fields to reach the family home. As resourceful Social Workers, we would take water, our lunch, and hats to protect us from the fierce sun (30-35 degrees ) Much of Ramu’s work with families was assessing their income, encouraging children to attend school, and educating them about cancer and how to cope with the practicalities of the disease. It was a wonderful opportunity for me to work with Ramu, and we learnt so much from each other. We enjoyed each other’s company, and Ramu was keen to teach me the local Tamil language.

I also worked with the young staff team at the newly opened hospice at the Sneha Deepam campus, about four miles from Vellore where I stayed. This was a very rewarding experience, the team were keen to learn, and language was no barrier.

On a lighter note, I really enjoyed the food, mostly vegetarian (and always curry! ) It was also great to spend time with” Dr. Mhoira “, and to learn more about the dedicated work of this amazing team. My grateful thanks to Mhoira and Cairdeas for supporting and encouraging me in this very worthwhile venture.'