Multi-national Delhi

EHA participants

Faculty

I cant believe it has been so long since I posted - sorry for those who like more regular updates. So a quick review of the past few months over the next couple of posts.
At the invitation of Dr Ann Thyle and the Emmanuel Hospitals Association we formed a truly international faculty to teach the Palliative Care Toolkit in Delhi November 2011. Let me introduce you to the faculty; Dr Ed and Penny Dubland from British Columbia who have been visiting India for some years but even better Ed speaks fluent Hindi as a legacy of his childhood at Woodstock school; Dr Chitra Venkieshwaren our wonderful Cairdeas friend and regular faculty who is based in Kochi where she leads psycho-oncology developments and services; Dr Jane Bates who leads palliative care in Tiyangane clinic based in Queen Elixabeth University in Blantyre, Malawi; Josephine Kabahweza who is the senior nurse from our Makerere Palliative Care Unit and wowed everyone with her African dress and enthusiasm; Dr Ann Thyle from India who is the director of EHA programmes in EHA and yours truly. Funding support came from several sources including EMMS and Cairdeas. We were a great team!

The participants came from across the EHA network and brought so much enthusiasm and dedication to develop palliative care. Teams came from MP, UP, Delhi and Uttaranchal; many working in rural settings where there are few options for care. We laughed, shared, played roles, sang, even cried and certainly learned so much together. EHA have plans to develop palliative care across their wide range of hospital and community programmes and we hope to be able to continue to offer training support.

Spcies galore

Visiting Mr S at home

I also had great fun introducing my Uganda and Malawi friends to my favourite parts of Delhi; dinner at Karims, smells and sounds of the old spice market, wonders of the Red Fort and Jama Masjid, goats with tinsel round their necks ready for Eid, rainbow colours of fabrics, momos for lunch, hot sweet spicy chai, transport by auto, metro, taxi, cycle rickshaw and then a classic Indian overnight train.The latter took most of the faculty to the Harriet Benson Hopsital in Lalitpur to evaluate the first 18 months of the first EHA palliative care service. What a lovely welcome and so encouraging to see how much has been achieved. We met several patients and their families who spoke so movingly about the care given to them. As the local health administrator (Add CMO) said about the PC team; 'these people look after those that everyone has rejected.'

Smiling or worried???

perhaps a good place to pause. Palliative care is reaching out to some of the most vulnerable who face suffering and distress due to chronic disease where the focus is on quality of life. What does that mean? Perhaps Mr S (seen above on a home visit) illustrates this well; he had treatment for cancer which left him tired and in pain and unable to work in his fields to support his family. In desperation he was told by a friend to come to HBM hospital. 1 year on he is free of pain and back working and enjoying the birth of his newest grandchild. In his own words 'my heart has become less heavy, I feel at peace, my pain is less.'

Makerere team with our new teeshirts

Back to Kampala where our team were able to have a special Christmas celebration. Thanks to everyone for hard work, love and care and welcome to our new volunteer team as well as the link nurses from Mulago Hospital and the deputy senior principle nursing officer as guest of honour. 37 people singing and eating and celebrating the end of a year and the hope of Christmas. The boat trip added adventure - particularly as most for the team had never been on open water before!!!!!So many challenges along the way this year yet also so much grace and joy. We are blessed indeed.

sunset Lake Victoria on the way home

Learning by Degree

2nd years at Mulago

2nd years at Mulago

52 students from 10 Africa countries; 10 weeks of intensive teaching; committed faculty dealing with last minute crises and problems; international faculty from the UK augmenting the expertise and adding to the rich mix; learning from an inspirational group of colleagues; singing every morning; dancing together in church; speeches, cakes, first ever clinical OCSE exam....we are nearly at the end of the 2011 face to face teaching session for the BSc in Palliative Care run by Hospice Africa Uganda and offered by Makerere University.

Charity concert with 3rd years

It is always an intense few months with many challenges but as before the inspiration of working in a committed team and with such inspirational students is humbling and rewarding. Many of the students are experienced palliative care colleagues and leaders in their own settings and bring their wealth of knowledge yet are still willing to learn and share. For some this is a new opportunity to travel and learn. Let me do some introductions. In the 1st year group are Eric and Eric from Cameroon. They had never had passports before let alone traveled by plane. Joining them from Zimbabwe is Chengerai and together they had great singing voices and joined me in our church thanksgiving service.

Malawi 2nd years

Lois

Our first Cairdeas scholarship students, Lois and Gertrude were part of this group and were proud to share in the visit to Mulago - their place of work too. In the second year were some familiar faces as well as many newcomers. 5 from Malawi showing the huge commitment to training and developing palliative care across that country and especially good to see them all back in Uganda having visited most of them last year. Christopher spoke of the way he has grown as a leader through the course. Then the 3rd years; pioneers having to manage the many glitches of a new programme with forbearance and tackle new subjects such as research and mentorship and doing so with enthusiasm. For many balancing the demands of work and family and study and finances are so challenging. Supporting one another and forming close bonds of friendship. Amos and Willy singing duets to calm the nerves before the first OCSE (Clinical ) exam; and who was more nervous; the students or the examiners most of whom were new to this style of assessment.

Prof Barbara Jack and myself relaxing

Prof Anne, Jo, Zena, myself and 1st years farewell cake

What of my fellow faculty members? Still smiling and supporting even when the challenges have been many and the many new members at Hospice Africa Uganda working well together. Working long hours and giving of themselves in many ways too. Sharing expertise especially with those from the UK who are part of  THET link project. Some old friends such as Prof's Scott Murray, Julia Downing and Barbara Jack but also new colleagues in Libby Ferguson and Ruth Adams.

2nd years and faculty

End of Children's module teaching

Prof Anne Merriman was speaking to the students at a reception in her home and reminding them that the word 'hospice' shared a derivation with the word 'hospitality'. Opening our homes and our hearts to those in need and supporting one another. It is sad to be saying goodbye to colleagues and friends yet the friendships and bonds made during these weeks will remain and grow and we are richer and more blessed for the meeting of hearts and minds and cultures. We also as a MPCU team are very sad to be saying good bye to Dr Jo Dunn  who has been such an important part of the team as well as friend for the past year. We wish her every blessing in settling back in to London life and a huge thank you for all she has given to us and to Uganda. We also welcome new members with Dr Jack (Ugandan) and Dr Lesley (UK)
Meetings and parting remind me of the motto of Aberdeen city; 'Bon accord...happy to meet, sorry to part, happy to meet again.'

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)