Reflections in Africa

Apologies for the sparse posting recently. The months have flown past but I will give you a wee taster of my work and travels. As I reflect back over

Ward round in Mulago Hospital

months I am so conscious of the privilege of working alongside dedicated and committed colleagues. There is overwhelming need in every setting with so many needlessly suffering pain and distress and also so many that need to know someone has noticed or witnessed their experience, someone cares and someone will 'be

Dr Nahla and me in Khartoum

there'. We talk about the therapeutic value of 'presence' in palliative care; offering companionship, value, meaning and hope alongside our clinical knowledge and skills. There is so much we can do to alleviate suffering and pain but we are our best 'therapeutic tool' offering ourselves in relationship and partnership with those who are in need.

Palliative care at RICK

The global palliative care movement is full of people who are activists to see policies and systems change and communities mobilised, to access training for themselves to be better equipped and then to train others, to find innovative solutions with minimal resources and  most of all to offer their skills and time and care to those in need. Dr Nahla Gafer is one such champion. She is a radiation oncologist at RICK, the national cancer hospital in Khartoum. Following on from initial training and support from Hospice Africa Uganda's international programmes including a month in Kampala, she has been developing palliative care in her hospital and supporting a wider movement in Sudan.

Pyramids at Nuri

Her team has included Esther Walker, a British palliative care nurse, and they have achieved an amazing amount since I last visited in 2009. There is a functioning palliative care unit, a country wide planning team and completed initial training. I was able to support her in visiting key colleagues in the universities and delivering some lectures. I was privileged to be asked to sign the visitors book by the Dean at in Khartoum University; green tooled leather and entitled 'Kitchener's book'. Meeting patients and their families I was struck by the gentle, compassionate, skilled care being offered. Patients often travel huge distances across this vast country to access treatment and arrive at hospitals with very advanced disease. Having access to pain relief and palliative care makes such a huge difference. A picture can only convey so much but I think you can sense the compassion and care from our Sudanese colleagues.
Being in Khartoum I even got to see an old friend (Kelly Macaulay) and see the pyramids; did you know there were amazing pyramids in Sudan?

IAHPC stall with friends!

Dr Liz Namkuwaya from our Makerere PCU and I were both able to attend the European palliative care (EAPC) conference in Lisbon and share with colleagues across the world. Inspiring and encouraging to hear of so much progress - yet still many challenges. I was delighted to participate in the International Primary Palliative Care Research group once again and to meet colleagues from the International Association for Hospice and Palliative  Care. The latter has an excellent website and resources. http://www.hospicecare.com/ We presented some of our work and were joined by Dr Jane Lewington who worked with HAU is now back in the UK and Willhemien Westerhuis, a medical student from the Netherlands who did an elective project with us.

Christopher, Batholomew and Karilyn 

Last of of my reflection comes from a recent visit to Tanzania. Tanga region has seen an amazing regional development for palliative care led by Muheza Hospital and the Diana Hospice Care centre. One of our students on the Makerere/HAU BSc Degree, Bartholomew Bakari,  is a key team member and it was a privilege to see him and 2 other current students; Violet and Julius. It was great to attend the regional meeting and see the encouraging progress and commitment as well as hear about the many challenges. Palliative care skills and medications including morphine are available at district level enabling many many more to access care and there are plans to see this roll out to the village level. There have been several mentors from the UK joining this project and the partnership has been so beneficial. Team after team shared how they were reaching out to their communities and bringing pain relief and care; often with minimal resources but great dedication. Well dome Tanga region and to Dr Karilyn Collins (founder of Muheza Hospice Care) and the teams on the ground.  Violet, who leads the palliative care team at Tanga regional hospital and is also completing her Diploma from Hospice Africa Uganda / Makerere University, shared this meaningful statement; 'Palliative care or Hospice is not about having a building or funding. Palliative care is the commitment of people witnessing the suffering of people with life threatening conditions and responding to their need for pain relief and to die with dignity' Thank you to all of you who not only support Cairdeas but moreover are part of a global commitment to bringing justice with compassion to the many millions who do not have access to pain relief and dignity.

Sunrise Indian Ocean

For an excellent and moving documentary entitled Freedom from Pain' click on this link ans watch out for cameos from Dr's Mhoira, Liz and Jo. http://english.aljazeera.net/programmes/peopleandpower/2011/07/2011720113555645271.html
I have much to share about developments in our team in Uganda but will save that till my next post.

India; whirlwind tour

For the past decade I have travelled to India at this time of the year to meet colleagues and friends at the annual international conference of the Indian Association for Palliative Care. It is such an encouragement to see former students now

Ancient Imam Bara

confidently leading services and presenting their work, to see young nurses nervously, yet proudly, standing by their first research posters, to see a new

Elephant statues in a new municipal park

state raise the profile of palliative care with politicians and the community as they host the conference and to enjoy the welcome and colour and spice of India. This year the conference was in the city of Lucknow, an ancient, richly historical city I have been visiting for a couple of years. The theme was 'networking' and we were able to share some of our work here in Uganda as well as hear reports from across India. Dr Jo Dunn joined me from Kampala as well as Nicholas Mellor from the UK and my friend Geoff Andrews from Congo. The paper I presented focussed on how palliative care training can challenge students and teachers at a deep level; challenging values and so changing practice. The paper can be downloaded from the Cairdeas website if you want to read more. It is at the heart of all we do in Cairdeas and can be illustrated by a quote from a recent student in Kampala; “It changed my practice. When I see a patient very sick I don’t give up, I know there is still something I can do for that patient, it was not like that before”
Long awaited news was also announced that the medical council of India has recognised palliative care for its MD (Specialist) training programme. A great step forward but still so much to do to ensure that there are trained leaders for palliative care and services that mean patients and families have the care they need.

Rickshaw drivers and friends 

Nicholas and a cycle rickshaw driver

As I mentioned earlier, these events allow for local initiatives to raise the profile for palliative care. How about having stickers with the slogan 'Freedom from pain: say 'yes' to palliative care' on thousands of auto-rickshaws across the city? This idea germinated on a previous visit in a discussion between Nicholas and Bilu, a local leader of the auto-rickshaw driver's trade union, followed by blood sweat and tears and the partnership of Cancer Aid Society and Help Age India to make it happen which led to the pictures below. Community empowerment in action!!

Drs Biji and Chitra

 This trip also allowed us to support training in several other centres. Dr Biji Sughosh, a former Diploma student, is now Associate Professor at the Malabar Cancer Centre in Northern Kerala and led a great 2 day Toolkit training programme with 3 of her former teachers: myself, Prof Rajagopal and Dr Chitra Venkiteshweren. I loved being back in the hot, humid, air of Kerala with some of my closest Indian colleagues. Well done Biji and to the young Director of the cancer centre for all you are doing to integrate palliative care and support patients and families.

CMC Ludhiana delegates

We then travelled to the far north to the Punjab where we gathered for the first 3 day Toolkit training at the renowned Ludhiana Christian Medical College. My thanks to Dr Pamela Jiraj from CMC and Dr Ed Dubland from Canada for their 
 organisation. It was great to see the enthusiasm and vision of a wide group of staff and there is a desire for more. As a young doctor keen to have further training shared with us; 'I need to study with someone who can supervise and train me; distance learning is not  enough’

Dr Shakeel and family

Faculty at Aligarh

 Thanks to a cancelled flight the next visit was preceded by a hair raising and exhausting overnight drive through the Punjab, on through Delhi  to the city of Aligarh. I arrived with only 5 minutes to spare before the inauguration of a one day palliative care training organised by Dr Hammad Usmani; a delegate at last year's Toolkit training in Lucknow. Dr Usmani is leading the new palliative care service at Aligarh Muslim University; a prestigious institution which is India's oldest Muslim university and has a a strong sense of service. It was great to see so many attend on a Sunday and to be joined by Dr Jo as well as colleagues Drs Shakeel and Sanjay from Lucknow and even Sr Shakila from Vellore. I think I managed to stay awake and give some useful teaching despite the lack of sleep! Remember these friends as they seek to develop palliative care in this setting.
Have you followed the whirlwind trip round 4 Indian states, traveling by car, rickshaw, plane and train, meeting with friends and colleagues new and old and seeing palliative care established and grow? It was a huge privilege but also tiring so a brief trip to the beautiful Taj Mahal and a few days relaxing by the beach in Kerala was the perfect ending.

Morphine for Christmas

I am writing this from a snowy and beautiful Scotland where temperatures staying well below zero and the contrast dramatic with the equatorial warmth of Uganda.I made it home despite the travel chaos in the UK to celebrate Christmas with my family. I am listening to all the familiar lyrics that are piped through our store and struck by 'all I want for Christmas is......' What do you want for Christmas? For many many people their wish and prayer is for pain relief; for accessible and affordable oral morphine. The good news is that our Mulago team last Friday had its first new supply of oral morphine liquid with heartfelt thanks to Hospice Africa Uganda and our Cairdeas appeal. I would have loved for you to see the smiles and the genuine relief as we were able to take the lurid green liquid (dyed that colour) on our ward round. You can see the delight on the face of Jo (our clinical lecturer) Francis (Degree student on placement) and Micheala (Swedish consultant volunteering for a month) and one of our nursing team, Harriet. The situation is not fully resolved but we now have morphine powder in country and hope to have the new system fully functional very soon. It made a very good reason to have a slice of Chrsitmas cake.  You can see the blackboard behind with many many names; our current in patient list. What kind of difference does oral morphine make for people in pain? Let me introduce you to Mr Sandrerson, a skilled tailor who is the chairman of the home based care volunteers for the Bangwe team in Blantyre, Malawi and whose home I visited recently. Working alongside the palliative care team these volunteers are key in supporting people in their own communities. "If we don't work together with the nurses how can we help our patients? If we see someone in pain and don't have any painkillers, don't have any morphine, then we feel we have let them down and get discouraged.' Let me also take you on a brief ward round in Mulago; first to the Burns Unit. Here patients can have unimaginable pain but the staff are experienced in prescribing oral morphine. However, with the recent shortage many many patients had no effective analgesia. Elizabeth tells a harrowing story of a family member deliberately sabotaging her paraffin with petrol leading to an explosion that seriously burned her as well as her daughters (2 and 11)
She has been in hospital for 2 months already for treatment but her pain had been severe with very little help. Now is is under control and she smiled 'I so appreciate your team visiting and bringing me morphine; thank you.' Richard is in a bed outside the ward because of the crowding and is swathed in bandages. Most of all he is worried about his wife who was injured when petrol was poured over them both and set alight. 'I used to dread the dressings being changed but now I can manage because you have brought me morphine; can you check if my wife has morphine too?' Lets go on to the orthopaedic wards and meet Wesley too; he is only 13 and had had major surgery for a tumour on his arm. His eyes dropped when we asked him what it was like to have severe pain and no morphine; 'I had no hope' he said, and then looked up with a shy smile, 'but now I have hope'.   
I want to say a huge thank you for the support for our morphine appeal. We have almost reached our initial target and will be able to put any extra towards a scholarship to support the training of a nurse to prescribe morphine as part of our Degree programme. Thank you for helping us to bring hope to people like Wesley, Richard and Elizabeth. Whatever your are doing this Christmas and whatever you are longing for, we all at Cairdeas and in our team at Makerere university wish you peace and joy to you and yours; echoing the words of the angels that first Christmas; 'Glory to God in the highest; peace on earth and good will towards man.'

Travels with Cairdeas

One of my great privileges is to be able to travel, share something of the work we are doing here, meet and learn from colleagues and offer mentorship and support. The Palliative Care Unit at Makerere is doing some ground breaking work and we were delighted to be invited to share in recent conferences and meetings.
Cape Town saw the Primary Palliative Care Research forum; a group which seek to develop research to support 'all people having access to palliative care at all times and for all dimensions in all setting and in all nations'! An inspirational group of people and Drs Jo, Liz and I were delighted to share with colleagues across Africa as well as Canada, Australia, Belgium and Scotland and see something of the beauty of Cape Town.  Can you see our good friend Prof Scott Murray as well as new friends Alan Barnard, Geoff and Ann Mitchell, Bart and Sophia.
We then traveled to the 3rd conference of the Africa Palliative Care Association in Windhoek, Namibia. More than 300 people from 37
countries gathered to share the successes and progress across the region since the last conference in 2007; as well as look at the key challenges and opportunities ahead. The theme was 'Creativity in practice' and our team including our senior nurse, Josephine and we were all able to

present 6 papers and 1 workshop as well as meet up with some of our Degree students. One challenge shared by most countries is morphine consumption and availability as we know only too well here in Uganda. One speaker reminded us that the USA uses 250,000 times more morphine that Ethiopia; we were reminded that pain control and palliative care is a human right; a 'must have' rather than a 'nice to have'.

Back to Work in Uganda now after a whistle stop tour to the UK to meet supporters at our annual Cairdeas Gathering, celebrate our 5th birthday and share planning discussions with Trustees and other colleagues. We are delighted to have been given a grant by the Diana fund to support our research and training here in Mulago and also delighted to have Dr Jo Dunn and Dr Julia Downing (both pictured above) join us. Our team is growing and strengthening. Meanwhile our most pressing day to day challenge remains the lack of oral morphine. We are grateful for the help of Hospice Africa Uganda but we are all struggling to find ways to support our patients in pain until this crisis is resolved and morphine once again is freely available. I will use my next BLOG to tell you some stories and to properly introduce our Christmas appeal for oral morphine but for a preview there is a justgiving site. http://www.justgiving.com/cairdeas-morphine

Scotland meets Uganda

Uganda 2010 was the catch phrase of the Gerard St baptist church team visit in August. Led by our pastor, Mathew Henderson and Sara and Tom Anderson 13 folk fund raised, planned and arrived full of enthusiasm and energy! Many were on their first visit to Africa and all were so keen to get involved and to share with people here. The aim of the visit was to see more of my work here but also to offer a blessing to me and my team, to patients and families, to children at a church holiday week. After a seminar to introduce the topic of 'spiritual care for the sick' along with my Mulago team and friends from church, they visited patients and families in Mulago Hospital and at home. It was not easy to see people who had so few resources and facing such difficulty but as ever there was tears and laughter, encouragement and sorrow and a sense of sharing together. They were warmly welcomed into my local church; Lugogo Baptist and learned to dance African style . They ate local food, sang on the minibuses, shopped in the markets, got sick, got better and all with the same enthusiasm and fun. A real highlight was a day offering support to a local slum community Naguru. The church has a number of links and members from here and we joined in a work party to clean out ditches, sweep with traditional brooms and watch an amazing bridge built. The latter replaced a rickety old bridge that had led to the death of a child

who fell off in a rainy spell. What a privilege! The church prayed that the bridge would also be a bridge between the communities and to God.

The Scots also took part in the children's holiday club with the Compassion kids, had radical haircuts, 

hurtled down the Nile in rafts, discovered they liked matoke, spotted a lioness and spent a memorable couple of days in the beauty of Murchison national park. Most of all I want to thanks them for the way they listened and shared and even cried and prayed with our patients and families. They showed the common humanity we share and the value we give when we take time to listen and to offer care - but most of all to offer ourselves. Thanks you to each one of you; I know you have spoken of the life changing difference this trip has made in your own lives. I look forward to hearing more from you at the Cairdeas Gathering on October 30th in Aberdeen (more details on the website www.cairdeas.org.uk)

A 'Degree for Africa' reaches further

Firstly apologies for being so slow at posting once again. We will have a Facebook page soon and it should allow for a faster rate of news! These past few months have sped by as we worked hard to be ready for the next group of students on the BSc Degree. We had a further intake to Year 1 (Diploma) as well as the first Year 2 group (pictured on the left) . All the latter had already completed a Diploma in the past. What an inspirational group of students. They now represent 8 countries across the continent and have stories to tell of the sacrifices they have made to be able to take part on the course.
One student from Zimbabwe shared how she had only received confirmation of her funding in the last week of her teaching month and had come to Uganda as a 'step of faith'.

We have a mentorship programme to support the students and you can see me with my Year 1 Malawi students (Linly, Idah and Alex). Lameck is one of my Year 2 mentees and leads the palliative care association in Malawi and brings many years of experience. This is the first opportunity he has had to undertake a Degree level course and is already a leader for palliative care in his country. Notice the Scottish connection - a present from Highland Hospice on a previous visit. Elizabeth is from Nigeria and is the lead nurse at a major hospital. The faculty is led by the Director of Education at Hospice Africa Uganda, Flavia Bukandana and coordinated by Consilous who you can see here with Frida from my Mulago team and Francesca from Zimbabwe. We have a great team in partnership with Makerere University (especially our Palliative Care Unit) and the African Palliative Care Association. You can see Dr Jo with some of the men (Batholomew, Gideon, Willy and Alex). We also have a link with UK faculty via THET and it was a pleasure to welcome one of my old Scottish colleagues from Glasgow - Dr Mike Basler. He fitted right in!!  We not only learned from each other with the students working hard for a long month but we also sang and danced and even paddled in Lake Victoria. Please remember these students as they are now back in their own countries studying at a distance and sending in their course work.  At a social event in Dr Anne Merriman's home they symbolically lit one candle and gave it to her before each lighting in turn. Light spreading across Africa to bring relief to those in need. Let the flame burn brightly.....
While we were welcoming the students I also had a wonderful team visit from Gerrard Street Baptist church in Aberdeen. This deserves a BLOG post all in its own right so will add very soon.

Monsoon and mentoring

 After some big challenges regarding permits and weather and illness the team of Grahame and Cheryl Tosh from the UK, Hamilton from Vellore and myself made it to the beautiful and remote state of Aizawl. Over an eventful 10 days we spent time with colleagues from Durtlang Presbyterian Hospital in Aizawl and Serkawn Baptist Hospital in Lunglei. The journey between the two places involves precipitous drops, hairpin bends, near misses, amazing views from tea stalls, stunning early morning mists, some travel sickness and even a beautiful waterfall on the way back. I have even found a mountain called 'leng' - maybe to climb on the next visit. We celebrated my birthday with typical Mizo breakfast and hours of singing! It was very encouraging to see how the principles of palliative care are being incorporated into these excellent hospitals. Dr Sanga at Durtlang has a significant role in caring for young men affected by substance misuse and there is an HIV/AIDS hospice aptly called Grace Home. Dr Lalramzauza, medical director of Serkawn,  attended the Toolkit training last year along with the senior nurse tutor. They have formed a small palliative care team seen here and we had the privilege of meeting some of their patients. One very ill elderly man spoke of the incredible hope and comfort he now knows because of the touch of God in his life. We shared and prayed with him and his wife. Mizoram is a Christian state where church support is central to peoples lives. How is this for good advice in a prayer garden? It says 'Listen to God'.

Mizoram's monsoon kept us a few days longer than planned but I was able to visit Bangalore and take part in the first HIV Palliative Care course at St John's Hospital led by Dr Shoba Nair. It was great to teach with Prof Rajagopal again and to see the great work of Snehadan HIV center led by Father Matthew Perumpil.

Off to Delhi in the 45+ degree heat and on to Lucknow with our team for the first ever Palliative Care Toolkit training in Uttar Pradesh. Jo Dunn from the UK works with Hospice Africa Uganda and was on her first trip to India, Chitra is of course my dear friend and colleague and senior palliative care and psychiatry doctor in India and Nicholas Mellor from the Palliative Care Partnership joined us to see the Toolkit training in action. We worked with our local colleagues Sanjay Diraj and Shakeel Ahmed from SGPGI and Piyush Gupta and his team at Canceraids society. We had an amazing week. The participants were enthusiastic and open and shared so much with us as well as seeming to really gain from the training. They came from 6 institutions and organisations in Lucknow as well as other parts of the state. We were also able to raise awareness in medical institutions in Lucknow, hold a press conference, share with senior colleagues in Lucknow and Agra and meet some patients. The press conference achieved  great media coverage and there are now many patients asking for help that is sadly very scarce in this huge state. As ever the needs are for continued support and mentoring but we wish all our participants every blessing as they seek to put their training into practice. here are a few quotes;  'It was excellent training and definitely it will be helpful to our work' 'I am really thankful to the organising committee for allowing us to be a part of this wonderful experience. I will do my best to practice my knowledge for the patients from today itself'
India of course offers so much to tantalise the body and saturate the senses. We ate wonderful food; Mogul shami kebabs; creamy buffalo butter in buns, melt in the mouth samosa, succulent bamboo shoots from the mountains, crisp dosai for breakfast, sweet sticky jellabies, burning hot parenthe in the back streets of Old Delhi washed down with spicy chai. We experienced something of the ancient culture - not least the most famous monument to love, the Taj Mahal.
Talking of culture; in the famous city of poetry, Lucknow, I had a poem written and recited to me by one of my students - in Hindi!