Dr Mhoira Leng

Learning by Degree

2011-10-12T09:09:00.001Z

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

2011-07-23T08:46:00.002Z

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

2011-03-20T06:09:00.005Z

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

2010-12-23T07:34:00.000Z

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

2010-11-23T04:25:00.002Z

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

2010-10-20T11:07:00.007Z

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

2010-09-24T14:24:00.002Z

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

2010-07-10T10:27:00.003Z

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!

Hope and courage

2010-06-04T15:09:00.003Z

Many thanks for all the messages of encouragement about our Degree students. They are sitting exams at the end of their first semester and mostly doing well. We have now selected 20 more for the August intake with 8 countries represented; very exciting. I had the privilege of meeting up with 3 of our Malawi students on a recent visit. Let me introduce you to Davie Mpate. He is a clinical officer at Mulange Mission Hospital which nestled at the foot of the Mulange Massif. Davie became interested in palliative care through his work with HIV/AIDS and is brimming with enthusiasm. Here he is with the new vehicle for

home visits that has been bought by Hospice Africa UK. The small palliative care team see patients from a 40km radius of the hospital which also offers health care to very poor and rural villages. Presently there is no resident doctor at the hospital and it is clinical officers like Davie and nursing staff who do the majority of clinical work in many such centres. Davie is passionate about palliative care and supporting those in need and excited about the training opportunities offered by the Degree programme. It was so encouraging to meet him as well as 2 others students; Chris at Ndi Moyo in Salima and Fred at the paediatric wards in Queen's Hospital in Blantyre. Mentorship visits like this can be an important source of encouragement and support for students as well as
giving us a real feel for the challenges and achievements of our students and I hope to be able to make such visits annually supported by Cairdeas. These students will be the leaders for palliative care and give us great hope for the future. I also had the chance spend a few days climbing Mulange (you can see why it is called the 'island in the sky') and then relaxing by lake Malawi with my friend Geoff. What an amazing privilege to be able to explore such beautiful places.

Back in Mulago we have been busy with the undergraduate and postgraduate exams with a communications exam included for the first time. Our clinical team is busy with increasing numbers of referrals. Let me introduce you to a young woman we met recently on the wards.Angela has a bone disease that means she is liable

to fractures and recently broke her hip which cannot be mended surgically. She is in constant pain and her family were praying they would find some help. When our nurse Regina came the next day and was able to give support and prescribe oral morphine Angela slept for the first time in weeks. What a difference yet morphine is not available to so many millions and even in Uganda we are struggling with a regular supply and in serious risk of running short this month. Angela could not thanks us enough and despite her continuing pain and

disability she has such a grace and peace. Her mother cried as she shared about their fears and Angela's courage and again thanked the 'angels who helped in their hour of need' . Here is Angela sharing some verses from Psalm 41v1-3 which talk of the blessings for those who help the sick and the protection and healing that comes from God. We left her room encouraged and humbled.
Thanks as ever for your support. I am back to India soon to follow up on previous visits and of course see great friends and colleagues, eat spicy food and gaze at the mountains of Mizoram once more.

Building for the future

2010-03-31T18:14:00.000Z

Is there anything more rewarding than mentoring and supporting committed, enthusiastic, compassionate colleagues and seeing them grow and develop? It is perhaps the greatest gift we offer in Cairdeas and one of my personal privileges. The new BSc in palliative care has been long been a dream, had a tricky and demanding gestation. But finally we have our 'Degree for Africa' and the prospect of training many many future leaders for palliative care in Africa. Here is a truly inspiring group of palliative care colleagues. Some are part of the team from Hospice Africa Uganda and Makerere University who have developed and now teach this new Degree programme. The rest are some of our first group of 21 students who started year 1 in February. They come from Uganda, Kenya, Namibia, Malawi, Swaziland and Tanzania. We have mothers, poets, government workers, mission hospital staff; they speak different languages and come from different cultures; yet all have such a commitment to learn and to make a difference for the many many who are in need in their countries. They have completed an intense 4 weeks of face to face teaching and now have gone back to their own countries to work at a distance completing assignments and exams and then clinical placements. Those leaving after Year 1 with a pass will be awarded a Diploma and others will stay on till Years 2&3 to complete their BSc. We have a further 13 coming straight into Year 2 in August who already hold a relevant Diploma. What an exciting opportunity for all of us! Here are the 5 students from Malawi where palliative care developments go from strength to strength. Do you like our team tee-shirts? I think wee Hannah is a bit too young for now. Why do we need this Degree? The majority of those in need in sub-Saharan Africa who face life limiting illness with pain, distress, loneliness and financial desperation do not have access to help. Most will not be able to have even basic pain relief with oral morphine. Families will struggle without support. These students and all those they in turn will teach and train will help to make a difference; please pray for them.

One last visit for this post. I have not only the privilege of seeing students train but also to be able to support and offer expertise to more senior colleagues. A fascinating conference recently in Riyadh, Saudi Arabia brought together many from across the Arab world as well as international experts form the WHO, USA, UK, Europe and yours truly! This Initiative to Improve Cancer Care in the Arab World (IICCAW) had the ambitious aim of eliciting the current stare of services and planning and brining together a strategic planing process for the next 10 years. We worked hard and there were impressive results - now to put it into action. I was especially pleased to meet palliative care colleagues from Saudi Arabia, Jordan, Sudan, UAE, Qatar, and interested others from a wider field. Riyadh is a very different place; full of the usual warm open Arabic hospitality yet also seems a world apart. It is respectful for women to be covered in public so I had my first experience of wearing an abayah. Who would have thought!

A beautiful world

2010-02-21T15:51:00.000Z

How did your new decade begin? I was privileged to be exploring the south west of this beautiful country then down into Rwanda. Beautiful Lakes Bunyonyi and Lake Kivu, paddling in a dugout to church, climbing cloud covered Mount Muhavuru volcano to almost 4000m, exploring Ishaha national park with tree climbing lions, hippos, buffalo.....Living and working here in Uganda is a real privilege. My thanks to my friends and colleagues who share this journey with me and who inspire and encourage and who share the laughter, the tears and the joy.

Back from my holiday it was down to work to prepare for the launch of the Degree programme at Makerere and Hospice Africa Uganda then off to India for a whistle stop trip. Delhi was cold for a lass from Africa! I was delighted that Ruth Wooldridge, an experienced palliative care nurse who has helped develop palliative care services in many countries including Delhi and Nairobi (as well as a friend), joined me for a mentoring visit in partnership with Pallium India. After a great day at the Cansupport foundation training course in Delhi we traveled to Lucknow in Uttar Pradesh.

We joined the team at Canceraids society and at Sanjay Gandhi Postgraduate Institute to review the progress since my last visit 6 months ago. The clinic was steadily growing with good relationships across the hospital and with current training of a nurse there will be better support for Dr's Shakeel and Sanjay. We were delighted to meet another nurse who has experience in palliative care and who immediately volunteered her help. Canceraids society has finished the building of a day care centre and now planning the service. We also saw real progress in encouraging others to develop palliative care and visited the medical colleges in Lucknow and Kanpur. There is such huge need in this state; 160 million people, a handful of places where oral morphine is available, rural agricultural economy with the majority living below the poverty line and so few palliative care developments as yet. We are planning to continue our mentorship and training support. In Kanpur I saw my first glimpse of the holy river Ganges - here a silted, sluggish brown shadow due to industrial pollution. Lucknow is an ancient and beautiful city and we sampled the architecture old and new and the food delights. If you visit make sure you taste malai mukkan and the chhappan bhog sweet shop!

Off to the warm south and a brief visit to my friends at CMC Vellore. I stayed at Sneha Deepam in the hospice and education centre and reminisced about being the first faculty to stay here. The gardens are now grown and beautiful and the service to many of the poorest continues to grow.

It is especially exciting to see young colleagues and former students grow and flourish. Bangalore is seeing growth and development in palliative care and the new head of department at St John's College is Dr Shoba Nair. With sincere and interested support from the management in this prestigious institution this enthusiastic department are developing training for HIV and palliative care as well as providing a clinical service. I took part in a writing workshop with Dr Chitra Venkiteswaren and others and gave an invited lecture. Then there was wonderful times of sharing with colleagues and friends across Bangalore, seeing 2 other former students, Dr Praveena and Dr Ravi Livingstone, now leading services in other hospitals and enjoying wonderful Kerala hospitality with Shoba's family.

On to the VXVII IAPC conference in Tiruchirapalli, a south Indian city full of ancient temples and Tamil history. With the overall theme of 'Twilight years' we looked at the particular problems of the elderly as well as sharing what has been happening across India. As ever I was overwhelmed by the warmth of the welcome, the wonderful food, outrageous compliments when wearing a sari and the inspirational commitment of my Indian colleagues. It has been a joy to see the growth and developments over the past decade and a privilege for myself and Cairdeas to be able to continue to support for this new decade. India has still so much need for many many of its people who live and die in preventable suffering and pain.
Come to India sometime with me and be inspired, challenged, intoxicated - I promise you first visit will not be your last.
Back now to Uganda for th start of the Degree programme - and that will need to wait till my next post.

Christmas in Africa 2009

2009-12-15T03:41:00.016Z

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

2009-09-19T14:18:00.010Z

'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

2009-08-09T09:13:00.022Z

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

2009-07-01T06:29:00.012Z

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

2009-04-22T15:23:00.008Z

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

2009-03-23T07:10:00.010Z

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

2008-12-16T06:46:00.014Z

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

2008-10-21T08:28:00.015Z

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

2008-07-27T15:11:00.014Z

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

2008-06-19T10:02:00.000Z

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.'

pallium partnership - refresher course

2008-05-13T14:38:00.000Z

One of the exciting developments for Cairdeas is the continuing partnership with Pallium India. As you can see from their website http://www.palliumindia.org/, Pallium India is committed to supporting the development of palliative care in a number of ways. Their activities include supporting clinical services, providing education and offering advocacy for access to morphine. We have worked together for 2 years now mainly supporting education and training, although relationships go back nearly 10 years since I first met the founder of Pallium India and now my good friend Prof Rajagopal.. We are also discussing plans to develop mentorship for new centres.

Our most recent collaboration was back in February when I was privileged to help co'ordinate and deliver a Refresher Course for experienced palliative care clinicians in Trivandrum, Kerala. Together with Raelee Jenson, an experienced nurse trainer from New Zealand who works with Pallium, and Dr Baburaj we put together an innovative programme for the 3 days supported by an amazing international Faculty and enthusiastic delegates. We welcomed Faculty from the UK, New Zealand, Australia and Malaysia (see Lalitha in the photo) as well as India ; all there at the invitation of Prof Rajagopal. Using case based scenarios we explored many areas of relevance to palliative care such as collusion, difficult symptoms, rehabilitation, hope and looking after ourselves. Team exercises led by Gary from Severn Hospice were great fun - why do you think were we pretending to be sheep? For all who attended it was an opportunity to learn together, share more deeply the challenges of working in palliative and be genuinely refreshed and supported. Time on the beach at the end was a real treat for some Faculty - here is Deirdre and Robert Twycross and Bill Grech with yours truly.

Cairdeas was able to offer 4 scholarships to colleagues who would not otherwise have been able to come from Hyderabad, Mizoram and Lucknow; here are some comments from Dr Evelyn, Hyderabad. (pictured with Jeremy and Penny Johnson from Severn Hospice)
'The Refresher Course brought together many renowned people from all over the world including Dr Robert Twycross and Prof Rajagopal under one roof! There was so much to be gained by just being present in the midst of so much experience and the remarkable faculty to student ratio. I learned many things....many issues and principles of Palliative Care are the same; no matter what country you belong to. Suffering and death are great equalisers. Sharing ideas and exchanging contacts with many people with the same interests are even now, a great source of encouragement. Putting my own work into perspective I realise there is still much to be done. I realised too that I need to look after myself. The course was a blessing and great encouragement to me and I would like to extend my sincere gratitude for the scholarship assistance provided to me'

To finish this post, a quotation from the ancient Sanskrit poet, Kalidasa that appeared in a recent Pallium India newsletter; 'We have watered the tress that blossom in the summer-time. Now let's sprinkle those whose flowering time is past. That will be the better deed, because we shall not be working for the reward.'

colleagues and conferences

2008-03-05T11:02:00.014Z

February in South India is a beautiful month and therefore a popular time for conferences visits from international colleagues. Many give their time generously from busy UK schedules. So, what can be achieved in these consultancy visits? Judith Smith has been visiting India since she spent 5 months in Calicut in 2005 and has visited as a Cairdeas consultant for the past 2 years. She has a particular skill in mentoring and supporting young nurses who may be only starting their palliative care and training or working as health care assistants. These visits can be challenging too as the vagaries of travel, planning and life in India take their toll! As part of our partnership with Pallium India Judith supported the nurse training in Trivandrum along with Raelee Jensen then came over to Vellore to support training at the new hospice. Here is an early morning session. Sr Patsy spoke of the great benefit of these dedicated nurses training sessions in reflecting on current practise, refining skills and knowledge and the opportunity to discuss concerns. We also visited the Tamil Nadu government cancer centre at Kancheepuram; a place where thousands of the poorest people are treated and a new palliative care service is developing. These visits help to raise profile as well as offer teaching.

The 15th international conference of the Indian Association for Palliative Care was a great occasion. Held in Kerala at Kochi, the pearl of the Arabian Sea, the focus was Quality and Coverage. More than 400 delegates from across India gathered with a significant number of faculty and delegates coming from abroad. This group dressed for the gala dinner come from Bangladesh, the UK, Uganda, Zimbabwe and the WHO! After many years of advocacy and developing innovative services in India, there is a need to review quality and a working group presented a draft paper with minimum standards for palliative care services. This will now be discussed, piloted and we hope implemented by the IAPC in due course. Congratulations to the organising team for Kochipallcon - I know something of the hard work and moments of anxiety and the whole team were rightly proud. It was a colourful, warm, professional, rich experience for all of who took part. There was a special lifetime award presented to Robert Twycross for his support to palliative care developments in India. We were particularly pleased to be able to support the faculty visit of Dr Lydia Mpanga Sebuyira from Uganda. She is the Director of Education at the Infectious Diseases Institute in Kampala and previously Director of Education at Hospice Africa Uganda - as well as a good friend! Being able to share experiences and learning across different centres and continents is a great encouragement. This lovely photo shows Lydia as well as Judith and Irene. Irene, a senior social worker from England has just completed 3 months at CMC Vellore. We will share more of her visit and the developements in social work in a BLOG post very soon.

colleagues and courses

2008-02-13T03:28:00.013Z

Firstly, my apologies for the late post. It has been a very busy and exciting month and I am looking forward to telling you more in the next few posts. We have had 5 colleagues visiting, many great teaching and training initiatives, 2 international conferences to attend and a first for Cairdeas. My thanks to all our consultants in India this month; Irene Nicholson, Judith Smith, Kenny Ferguson, Gillian Craig and Lydia Mpanga Sebuyira.

I will start with our 'first'. You may remember a few years back we supported training for the management of chronic oedema; led by Kenny Ferguson. This is a chronic and debilitating problem that affects many people - especially those with cancer. Some patients travel hundreds of km to try and get help - often too late. Although treatments can be very straightforward, when there is no one to help they suffer a cycle of infections, pain, disability and social isolation. We have been planning with several Indian colleagues to support a cohort of Indian trainers - that can use their expertise to train others and to start local services. This planning culminated in the first national 'training the trainers' course for chronic oedema management. 18 delegates gathered from 7 centres for this 5 day hands on training at the Education Centre, Sneha Deepam part of CMC Vellore. Kenny and Gillian, both experienced clinicians and teachers from Grampian in Scotland, quickly adapted to street life in India. Do you fancy a cut throat shave??

To illustrate the problem let me introduce you to
Muthuswamy. He was attending clinics for his leg swelling some time and his problem was beginning to come under control. However, he was so encouraged to be able to receive expert advice and to get a stocking that fitted his leg. His friend also had some ideas about how to access materials for bandages in India so all in all a great consultation by our course facilitators!

The course delegates were an amazing group. They were so excited to be able to access training - but also to meet together, share experiences and plan for the future. We now have seven implementation plans and will hope to offer mentorship and support in the months and years to come. We had a great social evening when we shared Indian cultural music with a tune on the 'moothie' from Kenny and Scottish dancing for all! A huge thanks to all who attended for their enthusiasm and commitment, to the course facilitators Kenny, Gillian and Shakila, to Hamilton and the team at CMC Vellore for hosting such a great week and to you for your support in so many ways.

Lastly some encouraging news. I have just heard from Cansuppoprt in Delhi who sent 2 delegates. Already they have arranged a training programme for in chronic oedema. I might even be able to get a quick photo to show these new trainers in action!

Welcome to 2008

2008-01-02T11:02:00.001Z

I wonder where you were this Christmas and what you were doing to mark the New Year? More importantly, what are your reflections on the year so recently lived and your dreams and hopes for the year ahead?
(photo shows Kovallam Beach, Kerala on Christmas Day and Indian Santa with me on Christmas Eve)
Thinking back to the past year for Cairdeas there have been many achievements and blessings. We have been privileged to work with colleagues in India and Africa. At CMC Vellore we have been involved in exciting projects such as the Fellowship in Palliative Medicine and the Diploma in Family Medicine. The new hospice now has patients after much anticipation! In Malawi we were able to help with training the trainers and sensed real hope for the palliative care movement there with such able and committed leadership. In partnership with Hospice Africa Uganda we are shaping plans to see palliative care develop in the university and teaching hospital setting in Kampala. We also were represented at the 2nd conference for palliative care in Africa - APCA Nairobi; and saw the incredible progress in many countries.
This coming year what are our hopes and dreams? To continue to see those in need receive the help they deserve. To support and train those who are committed to making a difference. To share our skills, time, love and most of all ourselves. To learn from those we work with and those we seek to serve. To be motivated by compassion and our shared humanity for if one person is suffering then it touches us all.

Let me tell you a story from the Hospice in Vellore. Shanthamary has a very difficult and heart-rending story. She received treatment for cancer including surgery but her wound had broken down and become infected. Her dressings were filthy and in rags and her family were desperate but too poor to get help. When the social worker visiting from CMC saw her in the village she was horrified to see the misery of her condition and even the dogs pulling at her clothes. She came straight back and asked if the palliative are team and hospice could help. This picture was taken 2 days later and I have Shanthamary's permission to tell her story. She has been admitted to the Hospice, her pain controlled with medication, her wounds cleaned and dressed, her beautiful hair washed and combed, her clothes freshly laundered and food provided for her and her family who are now staying with her. She is still very ill but what a transformation when loving and skilled care is offered. (the photo show the Sisters Patsy and Victima who are in charge at the Hospice)

The next few weeks and months for Cairdeas are exiting as we welcome 5 colleagues to India to help with training. We are delighted to be working in partnership with Prof Rajagopal and Pallium India and I will send updates of the various programmes on this BLOG. Later this year we will be focussing on the plans to support developments in Uganda.

(last sunset of the year over the Arabian sea and fireworks to usher in 2008)

What about our personal dreams and goals? Let me share with you some verses from the bible which I read today which inspired me. 'Don't worry about anything; instead pray about everything. Tell God what you need and thank him for what he has done' and 'Take delight in God and he will give you your heart's desires. Commit everything you do to him, trust him and he will help you'
Wishing you all a Happy New year.

Mulago Hospital, Kampala

2007-12-08T15:59:00.000Z

As promised in my last post let me tell you a little more about Mulago hospital and the project Cairdeas is hoping to support. Founded in 1913 initially to treat infectious diseases, including sleeping sickness, it soon grew to an unwieldy level until a new hospital was opened in 1962 and refurbished in 1987 . It is the main referral and teaching hospital for Uganda and hosts the medical school as part of the Faculty of Medicine at Makerere University. There is also a nursing school and institutes of public health, cancer and infectious diseases. Makerere is a prestigious University which grew out of the University of East Africa; becoming independent in 1970. Medical students have been taught palliative care since 1993 with a clinical rotation to Hospice Africa Uganda (HAU) The Mulago palliative care team began in 2006 with the appointment of 4 nurses who had been trained at HAU. Here they are hosting a visit from a team from Rwanda. Do you recognise Grace, left front row, who featured in a previous BLOG and is the first nurse in Rwanda to be trained in palliative care? The team have achieved much in a year but are desperately needing more resources and senior medical support. We are looking to form a much more comprehensive service and be able to offer it as a centre of excellence and a 'model' for colleagues in teaching hospitals and universities elsewhere in Africa. It is a big challenge but also a great opportunity.
One of the most successful recent initiatives has been children's palliative care and I want to take you with me to the cancer treatment ward. Caroline Rose, a paediatric palliative care nurse from the UK along with Dr Justin Amery, nurse Charles from Hospice and joined by teachers / play facilitators have worked with the oncology teams to make a difference to the lives of the children and their families. There are murals on the walls, a new classroom, morphine (can you spot the bedside bottle?) and other drugs made available, support for families and helping with the treatment costs of children with Burkitt's lymphoma via an Irish fund. The day I visited we were able to give out hand-knitted teddies sent from the UK. I wish you could have seen the excitement and joy such a simple gift engendered. Here is Irene (see left) who recently featured in a story in the weekly Guardian, proudly clutching her red teddy. She has been receiving treatment for much of the past year. Her family don't live in Kampala and cannot afford the expenses her illness has brought. The Hospice team have been able to not only support her treatment, but also to make sure she has pain control, a mattress to sleep on, food to eat, and the chance to keep up with her schooling. David (see right) has also had help with medication and treatment. Despite his illness and the need for strong morphine painkillers, you can see his delight and joy in this picture with Caroline. Quality of life shown in a smile. Adding life to days not days to life..........

Kampala visit

2007-11-28T07:25:00.000Z

Greetings from Uganda. You may have been seeing something of this beautiful country on the news recently as it has just hosted CHOGM and the Queen!!! For the uninitiated, this is the Commonwealth Heads of Government Meeting and was opened by Queen Elizabeth who was accompanied by Prince Philip, and Prince Charles. Dr Anne Merriman was invited the meet the Queen and here she is dressed in her African finery with her MBE medal! Not to be outdone; wee Mary, whose Mum works at Dr Anne's shows off her Scottish teeshirt too!There has been great excitement here as it was 1954 when the Queen last visited and a beautiful wildlife area named after her; Queen Elizabeth park. Uganda is hoping many will want to come in the wake of the Queen and I can add my wee mention that the 'Pearl of Africa' is well worth a visit.

The downside was endless motorcades, roads closed and work grinding to a halt!!! Despite these challenges I have been able to meet many of the people involved in the project here in Kampala. I am in discussion about Cairdeas supporting the development of a Palliative Care Unit within the Department of Internal Medicine at Mulago Hospital and Makerere University. Mulago is the main teaching hospital and also hosts the cancer institute for Uganda and the infectious diseases center. It is the major university teaching hospital in Kampala and Uganda; and there is huge need for palliative care for the many patients and families who pass through the doors. There is an existing nurse team but little medical support. We also need to support training, research and to raise the profile of palliative care throughout the university and hospital. I will tell you more of the hospital and it's needs in a later BLOG and introduce you to some people there. I have been very encouraged by the willingness of so many to meet, plan and offer support for a Palliative Care Unit; including colleagues such as the Dean of the Medical school, Head of Internal Medicine, Ministry of Health officials and Hospice Africa Uganda staff. You can see some of the Ministry colleagues on a visit to HAU; and they have consistently supported palliative care in Uganda. It was the first country to list palliative care as an essential clinical service and to approve training for morphine nurse prescribers.

All in all this is an exciting project and we hope to have some definite plans in place soon with a possible start date of June 2008. If you want to support this please let us know as adequate funding will be a crucial factor in making dreams a reality.

Lastly, here is a photo taken by a friend and Cairdeas supporter, John Daniels, of Lake Albert. So beautiful!!

World Hospice Day

2007-10-07T16:25:00.001Z

October 6th 2007 is a day to highlight issues of hospice and palliative care worldwide. There will be many many events across the globe, with details on http://www.worldday.org/ This year the theme is 'Across the ages - children to older people', and raises issues of access to care. A new report also highlights the scandal that many many people have not even basic pain control. Called 'Access to pain relief - an essential human right', it can be downloaded via this weblink. http://www.worldday.org/documents/access_to_pain_relief.pdf Many messages of support have been received such as this statement by the Irish rock star and campaigner Bono, "In the poorest countries, where so many people are fighting for their lives, the conditions of death don’t get much of a look in. But how we care for the sick and dying is surely a litmus test of our humanity. Just as we fight for equality in life, we should fight for equality in death.”

Let me give you a flavour of the problem. A colleague in Africa shared last year the tragedy of caring for patients when there is no access to analgesia. A young woman with severe pain due to her progressive breast cancer asked over and again for help. Her doctor had very little to offer and eventually had to admit this to her. She thanked him and went home to take her own life. We can only guess at the despair and suffering that goes unacknowledged and unsupported. Yet we have seen in Uganda, Kerala and many other countries that pain relief can be made affordable and available. (see the picture of oral morphine in Hospice Africa Uganda and Abdul Aziz, a patient in Kerala whose pain was controlled with oral morphine) A few months ago I had the privilege of spending time in India with journalists from the New York Times; Donald G McNeil Jr and Ruth Frensom, who were researching the issue of lack of access to morphine. The 2 articles appeared on the front page of the New York Times Sept 10th and 11th. Please read them by accessing the links below; and make sure you watch the audio-visual. It is such an excellent overview entitled 'Drugs banned; many of the world's poor suffer in pain.'

http://www.nytimes.com/2007/09/10/health/10pain.html?_r=1&oref=slogin
http://www.nytimes.com/2007/09/11/health/11pain.html

Finally, here is Charles. He works as a clinical medical officer in Sierra Leone where there is a palliative care service called Shepherd's Hospice. Charles and his team face huge problems; including no oral morphine, lack of electricity, prohibitively expensive fuel and a ratio of 1 doctor to 54,000 people.

Let us do all we can to raise the awareness of these issues and to support Charles and many like him who are seeking to overcome the challenges and ensure care is available to all who are in need.

Nairobi and Malawi

2007-10-03T03:32:00.000Z

September 2007 saw more than 400 delegates from over 30 countries gather in Nairobi, Kenya for the 2nd conference of the African Palliative Care Association (APCA). It was an exciting few days with delegates from such different countries having a chance to learn, share and plan. The energy and commitment shone through - but also the huge challenges facing those trying to ensure palliative care reaches those who need it most. The 'giants' of African palliative care were acknowledged and thanked (see left). East and South Africa have seen the greatest palliative care developments but there were delegates from West Africa and the francophone countries that were beginning to see changes. The delegation from Rwanda (see left) took time to plan together with a very proud Grace (front wearing white) who is about to graduate with a Diploma in Palliative care from Nairobi/Oxford Brooks; the first nurse to do so in Rwanda. Across the continent morphine availability and accessibility remain major barriers; as do other resources and training.

I then made the journey to Malawi with my 2 colleagues Prof Scott Murray and Dr Dorothy Logie. We were facilitating a Master trainer's course in the capital Blantyre; and supported by funding from the Scottish Executive. The course had been jointly arranged by the Palliative Care Association of Malawi (PCAM) and the Ministry of Health and sought to train the leaders in Malawi to teachers and trainers. It was a challenging week but inspiring and rewarding to work with such committed participants. They represented the key people who will take the palliative care agenda forward in Malawi - and very encouragingly, included senior participants and facilitators from the Ministry of Health. This government support will be crucial. We were also joined by Fatia Kiyange from APCA as a co-facilitator which again represents wider African support.

Malawi faces many challenges with significant HIV/AIDS prevalence, high maternal mortality, scarce resources, few doctors and a low GDP. Despite these challenges there is much being done in palliative care. There is an agreed manual for training and plans to include palliative care across the health sectors, including home based care. Making sure this training makes a difference in the villages and hospitals remains a challenges but we wish our colleagues well in Malawi as they seek to address these needs. It is a beautiful country - and the place where the idea for Cairdeas was born. You can see me under the baobab tree where the first Cairdeas vision was drawn up; maybe even the same tree that David Livingstone sat under! Lastly, sunset over the Shire River to the sound of hippos.

travel in uganda

2007-09-21T15:21:00.000Z

Come with me on a short trip to Uganda. The main base for Hospice Africa is in Kampala - the capital city; built across 7 seven hills. Uganda is frenetically preparing for the Commonwealth Heads of Government Meeting (CHOGM) with seemingly every road dug up and a forest of shrubs and plants ready for planting - if only it would stop raining. Several Ugandans asked me whether the Queen would be happy with the preparations and I had to confess I am not often chatting with HRH. Getting around is by minibus taxi known as 'mutato' with most journeys culminating in the taxi park. For the more adventurous there are the motorcycle taxis or 'boda bodas'. No helmets and a dusty ride but at least you can weave through the traffic jams. Several hours down the busy highway towards Rwanda and the DRC, in Mbarara, there is a very different model for Hospice Africa. Here a vehicle laden with medicines, antiseptic wash, morphine and children's toys leaves early in the morning. Stops are made along the 74km main road towards the district clinic where patients waited for their monthly review. Clinics under the banyan tree - often with a curious audience. We drove past the daily events of life in Ibanda district; boys dragging their heavy loads of matoke (staple diet of steamed bananas) to market and car mechanics setting up shop in the street. Martha and her team were not only offering a great clinical service but also were concerned with the financial challenges, family support and spiritual care. Holistic care in action. Our last patient was seen up a dirt track in the dark - and a sobering site as a desperately poor mother tries to keep her family together despite her illness. No sign of food or fire for the night - thankfully the team were able to offer practical help, clinical care and compassionate concern.

Did you sense some of the realities of palliative care in Africa? I is amazing to see how much has been achieved across Uganda with the support of the government and many many people who are committed to bringing comfort and care. We are discussing an exciting and challenging project to support the training and teaching in Kampala. Next week I will be at the African Palliative Care conference in Nairobi where the theme is 'keeping it real'; so watch out for the next post.

Meanwhile my favourite portrait of the inspiration and founder of Hospice Africa, Dr Anne Merriman. Surrounded by kittens and puppies as ever!

uganda

2007-09-03T06:14:00.000Z

Greetings from the 'Pearl of Africa' It is good to be back and to have such a warm welcome from Dr Anne Merriman and the staff at hospice Africa Uganda. This was one of the early palliative care services in Africa (1993) and sought to provide a model for cost effective care in this continent, as well as offer care to Ugandans. (see BLOG 11/10/06) One of their objectives is also to support palliative care in other African countries; and this is done by education and training support as well as exchange visits. Here you see Dr Anne with 2 nurse colleagues (Funmi and Kuye) from Ibaden in Nigeria. They have a very new palliative care programme and are receiving support and training from Hospice Africa. It was so encouraging to attend a Palliative Care Association of Uganda update and see how much has been achieved since 1993. I have been doing some teaching at the Hospice as well as exploring future ways Cairdeas can offer support.

Let me take you to meet a lady we visited with the Jinja Hospice team. Perpetua lives in a rural setting with her family. You can see her young grandson outside the 'kitchen'. She has been ill for some time and had a miserable experience of uncontrolled pain and expensive visits to hospital with little benefit. With the support of the Hospice team; who can assess and prescribe free drugs including oral morphine; her pain is under control and she is happy to be at home. She wanted to pray for us as she felt God had sent us to help her and give her family support. Here she is reading some verses from her bible and giving thanks for all the help she has received. It is good to be reminded of our core values and purpose in palliative care and to consider the many many people who are not able to access the help that they need.

I hope to visit one of the other sites for Hospice Africa this week so will tell you more of life in Uganda in my next BLOG.

Highlights so far have been many but include a very African church service led by a famous children's choir, Watoto, who are all orphans (many as a result of HIV/AIDS). Dr's Peter and Trish Kiehlmann were also with me on a visit from Aberdeen - small world?

travels

2007-07-24T21:09:00.000Z

I am finally back in the UK after travelling east with various stops for both work and catching up with friends and family. Thanks to all who have given me a home and welcome on the way. I have met friends from as long as 20 years ago as well as made new friendships and colleagues.

It was great to meet up with Dr Rosalie Shaw and Dr Cynthia Goh again in Singapore. Over a wonderful Chinese meal we had some very interesting discussions re possible areas of future work. Please look at the Asia Pacific Hospice Network's very good website for more information. http://www.aphn.org/
The temperature change from Delhi at 46 degrees C to Sydney and Auckland at 13 was a real shock; necessitating the purchase of thermals!! Katherine is a Cairdeas Trustee and treasurer and we had time for work - but she is also Mum to wee Ruari who is also my godson. Here is Mum and Dad (Rich) with Ruari in the Blue Mountains. I also had great fun with my niece Naama. Kitty (my sister) and Pat are presently in Auckland studying and falling in love with New Zealand all over again. It is such a beautiful country.
Farther east I was introduced to the 'biggest of everything' in Texas and was delighted to accept an invitation from Dr Suresh Redddy to visit the MD Anderson palliative care service in Houston and led by Dr Eduardo Bruera. Not only are they a leading model for palliative care in the USA but also committed to supporting sustainable palliative care across the world. The IAHPC is also based in Houston and it was a pleasure to meet Liliana De Lima, who is the Executive Director. This is an excellent organisation which does much to support palliative care in many parts of the developing world. Please check out the website. http://www.hospicecare.com/
My niece's name, Naama, means Grace in Arabic; and this is such an amazing concept. How do we know the reality of grace in our own lives? I watched the current film about the UK struggle to abolish the slave trade, Amazing Grace, on my transatlantic flight. If you have not seen it please do and tell me what you think. The words of the title song are so powerful, here is a link to remind you. http://www.amazinggracethemovie.co.uk/song.php I found the film a powerful reminder of our responsibility to seek justice in our world. What can we do to make this world a better place - to see justice in the midst of such injustice?
There is a verse in the book of Micah that says 'He has showed you, O man, what is good. And what does the Lord require of you? To act justly, and to love mercy and to walk humbly with your God. For Cairdeas we seek to challenge the injustice that so many are without the most basic access to palliative care. We work with many inspirational people - and there is great need. Thankyou for your support in this vision. What will your challenge be?

patient visits

2007-05-19T03:10:00.000Z

I want to invite you to come with me on a couple of visits to the homes of patients. Perhaps you can try and imagine some of the sights and smells and sounds as we travel together. It is hot - more than 42 degrees today but our vehicle has AC. It was donated by the Friends of Vellore, UK. A family have called to say they are worried about their mother who is known to the team. She is very ill and in pain and they asked for help. It can be hard to know how to care for relatives at home without support. There are few comforts at the best of times and still so much fear about diseases such as cancer. Our patient was a lady in her 60's. She was clearly feeling miserable when we arrived - lying on a hard concrete floor, flies buzzing relentlessly and obviously in pain and distress. Our hearts went out to her and her family. Within a short time we were able to help her family wash her and bind her weeping sores. Advice and medication were given. Her son then helped fill a waterbed we had brought - an inexpensive but effective way to relieve pressure sores and give comfort. It was quite a challenge to find the right size of pipe and water funnel!! Meanwhile, the grandaughter had overcome her shyness of the foreign doctor and we were making friends. Soon many of the neighbours in the village had also joined. We left some time later tired and very thirsty but knowing we had been able to help. A drink of tender coconut juice on the way home was wonderful.

Let me take you down to Trivandrum now. I met this gentleman during a visit to the Pain and Palliative Care clinic jointly run by SUT Hospital and Pallium India. I was joining Prof Rajagopal and his team to help with some training programmes. this man lives in a small town 2 hours from Trivandrum. For the past week he has made a daily journey to the palliative care clinic. He has cancer of his mouth with a nasty open wound. Despite good care from his family he began to have worsening pain and swelling. The team have been treating him with analgesics, steroids and antibiotics but also spending time every day removing maggots - totalling more than 100 maggots. This is a distressing yet common complication of these wounds in a tropical climate. He is thankfully much more comfortable now and will be visited by the team at home. He spoke of his pain and his struggle with feeling 'unclean'. Like many patients, his pain is far more than just the physical.

It was great to meet Donald McNeil and Ruth Fremson from the New York Times who are researching the issue of morphine availability. It will be a fascinating story so look out for it.

hot, hot, hot

2007-05-03T17:10:00.000Z

I realise that the UK had just had the warmest spell 'since records began' but I would love to open a quick window to Vellore and let you feel the heat. With the thermometer hovering around 38-40 degrees C, it is dry and dusty with any breeze circulating the air like a blast furnace. Rain is a welcome relief and washes the trees and shrubs till they sparkle and glow. A few days back we were treated to a spectacular thunder and lightening show and ran through the rain to get a better view. My partners in the madness were Dinesh (from New York) and Graham (chaplain from Adelaide) Here they are making puris one night for our supper!! It has been so lovely to share my time here with many some very special people - thanks to them all. Many have left recently - partly to avoid the worst of the summer heat; and we say our fond farewells. Here is Nita leaving - also a chaplain from Adelaide. The car is an Indian classic and is driven by our friend and driver, Suren. Many Indian friends are planning an escape to the hills too as the children are on their summer break.

One of the excellent projects we are involved with is a Distance Learning Module for Family Practitioners that has it's inspiration and leadership from Dr Vinod Shah. Some of you will recognise him from the days when he was the Director of the Emmanuel Hospital Association. This programme runs over 2 years and has 200 family doctors registered . A great achievement - and much of it due to the innovative and professional way the course is run by Dr Shah and his team. We are writing palliative care modules for year 2 of the course and I joined a writing workshop in Pondicherry. It is a great way to get a group of 'experts' together and some hard graft done - while also enjoying a few days away from the business of CMC. It was fun to explore the streets of this old French area - of course very much Indian now. We did manage some 'Gallic inspired' food and I have some cheese - a real find in India. This course has an important role - as so many Indian in rural areas rely very much on their local doctors. Referrals to hospital may be simply too expensive for many. The standard of practice and training of family doctors can be very variable. The course is also linked with many rural mission hospitals and will have the 'contact sessions' delivered in several locations. Having palliative care as part of the training will help take the philosophy and some knowledge and skill to new areas. Let us hope that in turn, many people and their families who are in need will find benefit and support. Remember, only 3% of the people in this vast and amazing country have access to pain relief at present.

I am off to visit Kerala for some training programmes now so will tell you more in my next post.

ps Dr Danjuma - lovely to hear from you. Let me have your email and I will write.

easter greetings

2007-04-17T09:24:00.000Z

Sorry for being a week late with my Easter greetings! I was up at 4-30am on Easter Sunday to join a CMC tradition of climbing a nearby hill to watch the sunrise. It was very beautiful and moving to share communion together. I am nicely baking here in Vellore with temperatures around 38 degrees average. I am freezing my water bottles overnight so we can enjoy a cool drink most of the day and switching the fans up high. Think of the patients in the villages with no access to fans, fridges or even water at times!!

The Fellowship programme has now started and Dr's Vishnu and Ravi are the first students. They are both enthusiastic and settling well into the department. The other programmes for the education unit are all in progress and look innovative and exciting. We will also be contributing to an excellent distance learning programme for Family Medicine run by Dr Vinod Shah at CMC. I will only be able to offer support for 2 months this time though the team will be busy with clinical work and education developments over the summer. We are still waiting for some administrative issues to be sorted before the first patients can be admitted to the Hospice- that will be a red letter day!!

I also have a new bicycle as a gift from Reena and Pradeep. It is bright blue and named Miss India (as were all the others in the shop). I am having fun riding around campus starting with an early morning ritual to collect idly or dosa for breakfast. As a contrast, Rishi, Reena's wee son, now says haggis is his very favourite food. Even better than biriyani! How is that for cross-cultural exchange?
One tip - hold on to your biscuits though or a cheeky monkey might whisk them away - as happened to one small boy at church!!

cairdeas ball

2007-03-24T21:24:00.000Z

Hello from a frosty and crisp Scottish morning. I am sitting with the sun filtered though the light, icy air of Perthshire enjoying Scotland. This is a beautiful country - my 'ain hame' and good to be back for a short while. Come and visit sometime when the heather is blooming, the sun lighting the mountains in amber, the lochs shimmering and the glens calling. That is when it is not raining !!!!We have just enjoyed the first ball for Cairdeas and what a great evening. We had a brilliant ceilidh from the band Shindig as well as good food, a fun auction with Doug Duthie officiating and a chance to share what we have been doing with Cairdeas over these past months. Thanks to all who made this evening a success. So many people put in a great effort and there were some amazing auction and raffle prizes. We even auctioned a sari and a sari tying lesson for a great price - thanks to Shoba who will do the honours. Most importantly folk were enthusiastic in their support for Cairdeas. While back home I have been wandering the UK seeing friends and family and taking the opportunity to be meet and plan for Cairdeas. Here is my wee god-daughter Phoebe and her sister Isobel down in Guildford. It was good to be part of Help the Hospice's training day for those interested in international palliative care, and to be at the APM meeting lecturing to the Doyle Club. All my UK colleagues are looking well if a few more gray hairs to share around. Our Trustees have had a day to look at the vision and planning for Cairdeas. There is much to be thankful for - not least that we have ended the financial year with a small surplus. Thanks so much to all who have supported and helped with this last year. Meanwhile, back in Vellore, the first Fellowship students are preparing to start on Monday the 26th! It is exciting to think that these students will be leading services of their own in years to come. I am looking forward to the sunshine though it is VERY HOT I hear. I have also missed my dosas for breakfast!!!!! Speak to you soon.

delhi

2007-03-12T16:12:00.000Z

After a great IAPC conference in Mumbai I joined Indian and UK colleagues in Delhi. We were supporting the annual foundation course in palliative care run jointly by Cansupport and IRCH (International Rotary Cancer Hospital). Cansupport, which started with one base led by Harmala Gupta and Ruth Wooldridge, was also marking it's 10th anniversary. There are now 4 bases across Delhi providing much needed support for patients and their families at home. They also have a number of information initiatives - including a telephone helpline. There is a great team which includes trained nurses, doctors, psychologists and an army of volunteers. IRCH and AIMS led by Dr Sushma Bhatnagar have also seen progress this year with the opening of a small palliative care ward. It was such a privilege to teach the enthusiastic participants including a day for volunteers. There were twice the expected numbers which was encouraging and challenging! We managed a Sunday afternoon stroll among the ancient tombs of the Lodhi gardens in Delhi - here are some of the Faculty (Sue Varvel, Harmala Gupta, me, Ruth Wooldridge and Liz Minton with Michael behind the camera) Sue is now in Sierra Leone and we wish her well.

I also took the opportunity to visit my friends at ASHA. You might remember my last BLOG post from there. It is an inspirational project that seeks to 'provide support, education and healthcare for these people, giving them the motivation and abilities to make lasting changes to their lives.' ASHA supports healthcare, community empowerment and environment change and covers 250,000 people in the slum colonies of Delhi. Remember there are 4 million in these slums who are facing the daily grind of poverty and illness!!!! As recently as 2006 a slum was summarily demolished to make room for the planned athletes village for the Commonwealth games. Libby (a friend and young doctor from the UK who is doing a year's palliative care research in Calicut) came with me on a visit to Chandepuri slum. We saw first hand the incredible success of the community empowerment programme and met some of the inspirational women and children who lead the developments. Here is a healthy child - a real tribute to the programme. We are planning to help ASHA look at the palliative care needs later in the year.

mumbai

2007-03-07T17:34:00.000Z

February 1oth to 12th saw the XIV International conference of the Indian Association of Palliative Care. It was hosted by Dr Mary Muckaden and her team at Tata Memorial Hospital in Mumbaiwhich is one of India's most famous cancer hospitals. Well done to the whole team for all their hard work! It was a great event with good conference sessions focusing on paediatric issues and some of the best posters and free papers of any conference so far. Here are 2 friends and former students Dr's Biju and Sunil (now in Alpha Pain Clinic, Trichur) enjoying a working lunch. It was also a lovely occasion to meet old friends and colleagues and forge new connections and friendships. There were innovative pieces of research being started including an very good early paper on sexuality issues from Manjeri. It is an important time for colleagues who work in isolated areas to have an opportunity to share. One such person is Dr Ujwal who works on her own in Chatisgargh, a state where there is great need - many tribal groups, no palliative care services and no oral morphine available. Dr Ujwal has asked if we can visit and help and this is very much the vision for Cairdeas - to offer support when asked and needed. There was also a colleague from Bangladesh at the conference for the first time forging new links across the borders..

International colleagues and speakers included Michael and Liz Minton, David Oliviere, Richard Hain, Gilly Burn, Jeremy and Penny Johnstone, Nathan Cherney, Suresh Reddy, Nick Pahl, Paul McCann and others!!! We had a whistle stop tour of Mumbai in the crazy traffic and saw the famous dhobi ghat. This is the world's biggest outdoor laundry where, every day, thousands of items of clothing are washed by hand (and feet), pressed with wood fire heated irons and returned to the correct owners!! Around 200 workers and their families literally live on the job!! I also enjoyed a bel puri and mango kulfi on Chowpatty beach with Nathan with no ill effects. Thanks to all for a great time in Mumbai.

Judith and Ismay's visit

2007-02-26T18:15:00.000Z

It was such a pleasure to welcome our first Cairdeas faculty of 2007 last month. Judith Smith is a very experienced Macmillan nurse who is at present working on a project to implement an end-of-life care pathway (Liverpool Care Pathway). She also spent 5 months teaching in the IPM, Calicut 2 years ago. Ismay Palmer is also an experienced Macmillan nurse who has spent a year in Tunisia and is now preparing to go back there to support palliative care training and development. Here they are after a long international flight - and immediate bonding!! Angela Pick, Judith's longtime friend from Australia, was also able to join us for a week on her travels. Here are some excerpts from Judith's thoughts and impression of her recent visit.

'The last three and a half weeks have been an exciting and memorable time...We arrived first in Cochin before travelling to Calicut. There we were joined in Calicut by Shakila Murali who is the lead palliative care nurse in Vellore and with whom we would be training in the second phase of the trip. We had three well attended and successful teaching sessions with nurses, many of whom were old friends...An overnight train trip to Vellore was such fun! We had a great time and most of us managed to sleep for some of the time, despite the frequent stops, coffee sellers and and changing passengers... Arriving at Sneha Deepam was quite an emotional experience. We were to be the first inhabitants of the building, which in the future will house up to 50 patients and their families in the hospice accommodation. There is also rooms for trainees and external faculty from around the world; as well as training and teaching facilities...We were at Vellore and CMC for 10 days and managed to conduct successful training sessions with nurses in various sites. Shakila, Ismay and I shared the teaching. Once again it felt as though real groundbreaking work was taking place as the first 1 day workshop was held at Sneha Deepam with 12 ward sisters from CMC Vellore...The Burns night was great fun not least from watching some of the slightly bemused faces observing the strange rituals we get up to in the

! It was such fun to dance the gay gordons and strip the willow in the tropical heat!.....Words cannot explain the inspirational work of the palliative care team who operate under challenging and cost driven infrastructure. The financial constraints of both the society they serve and the organisation in which they are based, are juggled for each case. All of the treatments that are offered have to be looked at as an individual needs based package. The result is that an amazingly high level of care is delivered by the committed and highly skilled members of the team...It proved to be a successful and inspirational experience. The whole trip culminated in being the first international flight to land in the snow at previously closed Birmingham Airport last week'

My thanks to Judith and Ismay, the place is much quieter without you. Your hard work and generous friendship was a great encouragement and blessing.

celebrations and friends

2007-02-04T06:11:00.000Z

January has been a busy month, not least with the visit of Judith, Angela and Ismay. They will be adding their own impressions in the next post. The rooms were ready in time and it has been such fun to stay here in Sneha Deepam as well as having the honour of being the first faculty to do so. Huge thanks to Rena, Hamilton and the team for working some miracles and making all this happen. This is a now a beautiful building and will be a great resource for the future. We wish God's blessings on all that is done here - both in training but also in the care of patients when the hospice opens.

I was also able to visit Calicut briefly, to see old friends and do a little teaching. Judith was able to se old friends and help with training. Ismay, Shakila and Angela had an opportunity to see the amazing community networks. Then it was off to Chennai to attend a wedding. Kalpena used to be involved in running the service in Calicut and it was so lovely to be invited to her son's wedding. Great too to be with old friends Chitra, Gayathri and Mallika; and to dress up for the occasion.

Burn's night was celebrated on the 27th of January - perhaps for the first time in Vellore. What an occasion! Haggis from Scotland plunged with a carved Rajestani dagger , tartan capped nurses singing 'Donald where's yoor troosers', home made oatcakes, a wee dram, ceilidh dancing and great fun!!! Thanks to all who were brave enough to come and join in the celebrations to make a Scottish lass feel at home.

New Year 2007

2007-01-25T03:54:00.000Z

What were you doing this New Year? It is a time to reflect, smile at the good memories, perhaps shed a tear for the sad times, plan for the future and be grateful to God we can see in another year. I was in Kerala with friends David and Joyce Wintour, who made a stop in India after spending several months working in a hospital in rural Uganda. It was lovely to see them and to enjoy a Kerala New Year; young dancers performing an ancient Tamil dance form - bharathanattyam; watching the fisherman pulling in their catch at dawn much as they have done for centuries; sleeping under the stars on the backwaters. What an amazing world and a New Year full of promise! An old poem says; 'I said to the man who stood at the Gate of the Year, 'Give me a light that I may tread safely into the unknown' and he replied, 'Go out into the darkness and put your hand into the hand of God. That shall be better than light, and safer than known way'

Dr Reena and the team are now very busy developing the education programme at CMC. I mentioned before that the hospice and education unit was nearly finished and operational. Well, it will soon be true as our first faculty arrive in 3 hours to stay in the new unit. Hamilton and Ramu are hastily putting the finishing touches! Perhaps the train will be delayed!! It is exciting to see everything come together and my next post will tell you more about Judith and Ismay's visit. A major achievement has been the development of a one year, residential, postgraduate Fellowship in palliative care for doctors. The course is now fully approved and applications are being recieved. Here is the web link to the CMC website. The first students will arrive at the end of March.
http://www.home.cmcvellore.ac.in/admissions/admin.htm

What difference will all this make? Let me give you some thoughts. If you are a patient visiting CMC from the north and east of India there are only 3 places you can consistently get oral morphine. You may be travelling up to 800km to get a presciption for your sick relative! Often there is no one you can turn to.You are left without support and without hope. All over India and beyond this despair continues. Only 4 medical schools in India teach undergraduates about pain control and palliative care. So very few have access to palliative care in their communities. However, there are many throughout India who are working to change this situation. At CMC, the palliative care team hopes to train future leaders who can continue to make a difference. It is a privilege for Cairdeas to be a part of this vision. Thank you for supporting us .

comments

2006-12-24T17:33:00.000Z

Just a quick comment about comments!! It is brilliant to hear your thoughts but please be aware that I don't get your email ID when you post a comment. So if you would like a reply - please include your email ID. I would love to respond. Thanks for reading the BLOG and being interested in Cairdeas.

Christmas greetings

2006-12-24T07:45:00.000Z

Wishing you a very happy Christmas and God's richest blessings for 2007. Christmas celebrations come early in Vellore with parties galore. There is also the habit of middle of the night carol singing! I was privileged to sing in the college carol service which was very moving - and a bit panicky as we were short of practice. Hamilton, our team chaplain was the conductor, and did a great job. The picture shows him with me and Grace and Fellina. Hope you like the sari! I have been eating lots of chicken biryani - the traditional Christmas fare - as well as the many sweets on offer. These are gulab jamen - and dripping with condensed milk and sygar syrup!! We are looking forward to a busy start to the new year. The hospice will admit the first patients around the second week in January. there is still much to be done but it is exciting. Also we have plans to do some nurse training in the education unit and will be joined by Judith Smith and Ismay Palmer from the UK. The first 1 year Fellowship in palliative care for postgraduate doctors in India has been confirmed and will start in March. Adverts have gone out and we are busy with the curriculum. The time seems to be flying with so many challenges and opportunities. I feel very much part of the team here and so glad that Cairdeas can be involved in this way. Our vision is to see the growth of palliative care in the developing world. Supporting raining programmes in Vellore can have a major impact and my thanks to all of you who are supporting and interested. I was struck again by the need in this country when I met a girl of only 25 who had travelled from Nepal to Hyderabad to get help for her cancer. On the way (several days by train) she was abandoned by her husband who took all their money scraped together for treatment, leaving her with a 4 month old child and 2 other children at home. The need is so great but at least this girl was cared for by people with expertise and compassion. At this time of year when we enjoy the celebrations and the gifts and the fun - spare a thought for those far and near who are vulnerable and hurting this Christmas. It is a time of hope when we remember the promise of that first Christmas - a Saviour who would bring peace on earth and goodwill towards men. Thank you again for all you support - I will keep you in touch with what the New Year brings!!

vellore

2006-12-05T03:17:00.000Z

Good morning from a warm, clear day in Christian Medical College, Vellore. This hospital, and it's medical college, is now famous across the world with a reputation for excellence in clinical care, research and education as well as a commitment to serve the needy and vulnerable. Over one hundred years ago, a dynamic and resourceful young woman was challenged by the needs of the people of India - especially women. Ida Scudder started on a long journey to make a difference that took her through medical training, many obstacles and led to the establishment of Christian Medical College Vellore - one of the first centres for the training of women doctors in India. Over the ensuing years much has been achieved here - including seminal leprosy research and surgical developments. It is now a 2000 bed multispeciality hospital with undergraduate and postgraduate training. It services the community around Vellore in Tamil Nadu with primary, secondary care and community programmes. It also has patients coming from all over India including some nearby countries such as Bangladesh and Nepal. 70% of patients travel long distances - maybe several days on the train. The palliative care team had been in place for 31/2 years and is based within the main hospital. However, very soon the first patients will come to the new in-patient hospice. We are also busy planning for the new education unit which is part of the hospice building. the main role of Cairdeas is to support the clinical team and help with the development of the education strategy. It is an exciting challenge and I will tell you more in subsequent posts. The photos show the chapel at CMC medical college which is an oasis of calm and spiritual refreshment. The other picture was taken on the way to a rural hospital clinic - a typical and beautiful view of paddy fields. My address here is; Palliative Care Unit, Christian Medical College, Vellore 632004, Tamil Nadu, India.

tamil nadu

2006-11-14T04:15:00.000Z

Hi from the hot and wet south of India. I arrived 10 days ago in Chennai (used to be called Madras). After meeting friends and collecting my Indian clothes I had left behind, it was on to Vellore to join the team in the palliative care unit at Christian Medical College. This famous hospital is usually known as CMC - as I will refer to it from now on. First I thought I would put in a map of India to help with orientation. Tamil Nadu is the bottom right state - with a long coastline on the Bay of Bengal. You may remember the photographs from the Tsunami as this coast was badly hit. The southernmost point of India is in Tamil Nadu; where the Arabian Sea, Indian Ocean and Bay of Bengal mingle. It has a tropical climate and a combination of beaches and coastal areas, hill stations and mountains, Carnatic music, ancient culture and language. Indeed, Tamil is one of the most ancient of the Indian languages and a source of fierce pride. With a population of 62 million, it is a predominantly agricultural state but it's capital, Chennai is the fourth biggest city in India. I arrived in Vellore on a rainy day, with the mist obscuring the hills, that was almost reminiscent of Scotland. More in my next post.

glimpses of africa

2006-10-22T08:24:00.000Z

How can I sum up my short trip to Africa? I can only add to my previous posts with some glimpses of Africa that touched my heart, inspired me and will make me hope to return. I visited 3 countries over 6 weeks - South Africa, Uganda and Rwanda. I met so many people committed to palliative care and doing much to improve the access for those in need. As ever there are many difficult memories too. There are many who are hungry and trapped by poverty. There is a shocking lack of justice in how the world's share of resources are shared. There is the huge burden of illness and in particuler HIV/AIDS. Visting the genocide museum in Kigali is so essential in understanding something of the horror yet is an emotionally draining experience. What do you think of when you think of Africa? Let me give you a glimpse through my eyes.

Africa is a land rich in its natural beauty. A beauty which is at once accessible and yet wild. Seeing these giraffe up close was amazing - how did God dream up that neck? A rhino waking from it's slumber is an awesome beast; spotting the zebra so carefuly cammoflaged a delight. Beautiful sunsets, thundering rivers, peaceful lakes. I am glad to have survived my Nile kayaking adventure - and thanks to my guide through the grade 5 rapids. Amazing to think of those great explorers spending their lives finding the source of the Nile and here I am paddling down in a small piece of plastic.

Africa's richest beauty is in it's people. Warmth and smiles and help for a 'poor Mzungu' like me. Amazing colours and hair fashions. Bright, curious children; enthusiatic church services (they even asked me to preach!!); great food - especially when you can add some firey piri-piri; talented craftsmen producing work both ancient and innovative; history going back to the cradle of hunmanity yet modern and devloping. So many impressions! Let us hope that Cairderas is able to work with friends and colleagues to support palliative care developments in this amazing continent.

world hospice day, rwanda(2)

2006-10-21T13:50:00.000Z

October 7th was the second World Hospice day. This is a global event that seeks to raise the profile of palliative care needs across the globe and this year had a theme of 'Access to care for all'. We had been visiting some of the support groups for people living with HIV/AIDS. Let me tell you about one group that was called - 'Trust in God' this group had approached a local pastor who also lived with HIV to ask for help. They told us that they has found hope. Hope in God and as a result hope for living. Un,like many such groups they had a sense of energy and self-help which was inspirational and infectious. Micro-enterprise projects such as shoe making, sewing and baking bread were all underway. We were invited to share the first bread and, as it was to be on World Hospice Day, we had a joint celebration. You can see the photos; and I hope sense the fun and the hope. The wee lad on my lap is pretty ill but loved cuddling the 'mzungu' and sharing the warm bread. This group are part of the area of Gikondo in Kigali which is the district where there is a possibility of a hospice service., There was real enthusiasm for this project and a willingness to be part of the community training. Their only request was that I shared their experience and asked that others would pray for them. A very moving day!

rwanda(1)

2006-10-13T10:06:00.000Z

Only 2 weeks in this tiny country in the heart of Africa - le pays du mille collines. I was visiting for cairdeas at the invitation of Signpost Rwanda - a charity with it's based in Dundee, Scotland, who are involved in projects for children and vulnerable women in Rwanda. They have achieved much and have a great team in Rwanda, Here is Pastor Nathan, Karen, Doreen, Janet, Josh (the computer whizz) and little Shema - Janet's son and my play mate while visiting. The Rwanda team have been challenged by the need for hospice and palliative care in their country and I was visiting as part of the feasibility planning and research. Thankyou so much for taking me to your hearts. I was able to meet so many people who are part of the new Palliative Care Association of Rwanda and hear something of their plans and vision. They have government support and undergone initial training supported by the African Palliative Care Association. The need is very clear with around 3% HIV/AIDS prevalence as well as a rising incidence of cancer and other chronic illnesses. So far there is very limited access to oral morphine and no palliative care service. However, there is a real sense of working together. My visits included the university hospitals in Kigali and Butare (here is Dr Cwynya-ay in his paediatric ward in Butare) ,senior nursing colleagues at King Faizal hospital and some of the key networks for supporting those living with HIV/AIDS. I wish them every blessing in their planning and have offered support from Cairdeas as needed (and available). I am sure much will be done to change the face of those suffering with palliative care needs in Rwanda over these next years, so that children like this little one can have the help they so deserve.

uganda

2006-10-11T16:40:00.000Z

Uganda was described by Winston Churchill as the 'pearl of Africa' I have only had a short time to explore this beautiful country but I very much hope to be able to spend more time here in the future. Here is sunrise over Lake Victoria. In palliative care history it holds a special place. In 1993 Dr Anne Merriman and her team, with the support of the government, opened Hospice Africa Uganda. This has developed into a model of care that has met the needs of so many here in Uganda but also formed the basis for training and service support across Africa. It is a busy yet welcoming place where you can be sure of excellence in clinical and educational skills, a deep sense of faith, great food from the tiny kitchen and the brightest morphine bottles you have ever seen. This picture shows how simple tools such as used water bottles, mixed with ingenuity and simple morphine powder can provide affordable oral morphine solution to those in pain. 10 days of morphine is equivalent to the cost of a loaf of bread. Patients are seen at the clinic or by one of the outreach teams. There are also 2 linked units and a network of trained community volunteers. This lady has her oral morphine at home - helped by a friend who took her to the clinic, as she had no family suuport. Her cancer pain is now under control. As in India, care can be offered at an affordable cost with the support of trained health care workers, and community support. My thanks to Drs Anne, Lydia and Ita and the rest of the team for their warm welcome and wilingness to share. I have long wanted to visit and was in no way disappointed. It is so useful to Cairdeas and so humbling personnaly to see what you have achieved and to learn of the resouces available - particularly in education. I look forward to being able to stay in touch and possibly work togetherin the future. Off to tandem kayak the source of the Nile!

south africa (2)

2006-09-29T07:35:00.000Z

Following on the last post I attended the 4th multidisciplinary palliative care conference in Pretoria. This is organised and masterminded by Noreen Napper and I was part of an international speaker group that included Dr Robert Twycross and Dr Anne Merriman. You can see our photo. It was great to meet colleagues from across South Africa as well as further afield. The programme was busy and varied and included many excellent speakers form South Africa. It is good to put palliative care in an African context. The first service began inZimbabwe in 1979 with spread to South Africa, Kenya and Uganda in the 1980's and 90's. Now there is growing awareness of the need for palliative care and services are developing in other countries such as Malawi, Nigeria, Tanzania, Zambia and others... Still however, few countries have good (or any) access to oral morphine and the challenge and tragedy of HIV/AIDS remains so difficult. Perhaps nowhere is this more clear than in South Africa which now has one of the highest rates of HIV in the world. Their recent figures show that many more people re dying in their 20's, 30's and 40's than in older life. This will becime even more of a social problem as time goes on and presents an urgent challenge to the country. In 2005 the African Palliative Care Association was formed to support palliative care accross this great continent and I am looking forward to visiting their offices in Uganda today!! More about that in another post.

south africa (1)

2006-09-29T06:56:00.000Z

Hi everyone - after a long pause. I am back in Africa and loving being here. As ever I have had major problems with computer access so was only able to add a post today!! I will tell you a bit about the past few weeks over the next postings.
I arrived in Johannesberg on the 14th September. Initially I was working with Dr Natalya Dinat and the Wits palliative Care team. They provide an academic base within the Witswatersrand University and a clinical service within Soweto. They are a fantastic team and it was great to see them again. I hope to add a photo soon. I addressed the grand round medical meeting and attended a seminar arranged as part of World Hospice Day (7th Oct). Dr Robert Twycross was the main speaker and it attract a wide audience including the Dean of the University and senior politicians. Let us hope it will help in raising awareness of palliative care and the need for service provision and training. This year saw the first medical students complete their palliative care curriculum at Wits, with excellent feedback. In particular the students explored areas of personal coping, emotional and spiritual distress as well as the more physical problems. Much of this work was presented in portfolios that were innovative, creative and moving to read. One student read a poem she had wrtiien inspired by her patient entiltled 'Death be Defied' - I will try and add a quote later. I took part in the 2nd Wits palliative care day which was a fun and busy day as the students worked with case scemarios and simulated patients to explore palliative care issues.

Africa is an amazing place as I am discovering each visit. I hope to share some of my impressions with you in future posts but let me quote from Archbishop Tutu, who is a great supporter of palliative care and recently celebrated his 75th birthday. 'We are made for goodness, we are made for love, we are made for laughter, we are made for joy, we are made for transcendance' Here is an African sunrise to inspire you.

bonnie scotland

2006-08-08T08:10:00.000Z

As promised I am giving you a flavour of my few weeks in Scotland. I love to travel and am continually amazed at the wonder and beauty of so many places. But Scotland has a special place in my heart!! These photos are of Aberdeenshire. Aberdeen has wonderful parks and floral dis[plays - often winning City in Bloom contests. It also has an amazing coastline with fantastic beaches just perfect for a BBQ and paddle - if you are willing ti brave the cold North Sea. Highland games are a feature of the summer months complete with dancing, pipe bands, and athletic feats. My Indian friends Chitra and Shoba enjoyd a dram of whisky with the Chiefton at Dufftown. Cairdeas has its roots in Scotland and the colour of our logo reflects the purple hue of the heather. It has been great to have the chance to share with so many about Cairdeas. Thanks to all who are involved at the 'home end' - I hope to have some photos of our teams soon. We are encouraged by those who are wanting to become regular supporters and hope to see an increase in the Cairdeas 200. (see website for further details www.cairdeas.org.uk) I am delighted to have the opportunity to meet the Aberdeen Indian society soon at their independance day celebration and share about Cairdeas. I am now working for a few weeks in Shrewsbury and preparing for a trip to Africa. More in due course. Keep October the 22nd free if you can come to Aberdeen for our annual meeting.

round the world

2006-07-18T08:34:00.000Z

Hi everyone and sorry for the long silence. I have been round the globe since my last posting and then back to sunny Scotland (yes it is true!!) Leaving India after 5 months was hard and those I worked with are often in my mind and thankfully often in contact. I saw my new wee godson Ruari in Sydney (son of Katherine and Rich Burnett; Katherine is a Cairdeas Trustee and treasurer). Then it was off round the globe with a brief and idyllic stop in the Cook Islands. It is a beautiful paradise in the middle of the Pacific. Great to see friends in LA then back to Scotland. We have been busy with Cairdeas work - meetings, networking and planning groups. I have been humbled by the interest of so many. Our Trustees have approved the projects in Rwanda and Vellore. We have agreed next years budget too - just need the money now! Cairdeas 200 is our vision of 200 people to support us a minimum of £10 per month and act as our founder members and advocates. Slowly this group is coming together (15 so far) If you would like to be part of this please get in touch. www.cairdeas.org.uk or info@cairdeas.org.uk Thanks to all who have and are supporting us. A special thanks Steven who did a 10km run earlier this year and to those who tried to do a parachute jump but were thwarted by the clouds. They are all scheduled for September so have fun and take care! My next posting will have pictures of bonnie Scotland!!

cochin

2006-06-01T07:21:00.000Z

As you may know, my main role over the past few months was to work with the team in cochin based in the Amrita Institute of Medical Sciences. It has been a rewarding and challenging time - and a time of real upheaval and change. My thanks to the warm welcome I was offered. My involvement has included support and training for the 2 year Diploma students, clinical teaching, setting and assessing assignments, arranging examinations (the first OSCE for ?Kerala) and offering management support and mentoring. Can I pay tribute to the work done by Prof Rajagopal and Dr Gayathri Palat in the development of this service and wish them well as they move on to other roles? Best wishes too to this years Diploma graduates as they move on (Biju, Biju and Sunil). The picture shows a social gathering. It was a real pleasure to work with the students and team and learn from them. They have made a real impact in AIMS with innovative practice and sound clinical work. I look forward to seeing some published work such as the experience with 'allow natural death' orders. We shared much over these months and laughed together many a time. Dr Charu Singh with the backing of Dr Sangeev Vasudevan will be leading the department now and I wish them all the best. I have been invited back as an external examiner for the Diploma exam in January 2007 so will get an opportunity to see the students again - even if not at their most relaxed!!

home care

2006-05-16T06:40:00.000Z

I want to give you a glimpse into palliative home care. You have heard from Jan and Graham about their experiences and it is always a privilge for me to join a home care visit. In Calicut, a team consisting of trained volunteers, nurse, doctor and driver go out every day. Patients are reviwed, urgent visits arranged, proceedures carried out such as IV infusions, dressings, tapping of fluids in the chest or abdomen, medication supplied, social support given and emotional and spiritual support offered. The driver's role is the most intriguing as he at starts by negotiating the rural roads like a pro, reversing up impossible lanes before changing roles and assisting in dispensing medication and is then asked to help with preceedures. The combination of local knowledge (coming from the volunteers, who often live in the area) and the health care skills is inspirational. Here is one of the volunteers being introduced to me - he is a huge support to so many families. Coping with the journey, hot and humid climate, responding to unexpected needs, supporting relatives and patients is a draining yet rewarding task for the teams. What a privilege it is to be invited into someone's home often at a very difficult and vulnerable time. The photo here shows an elderly lady who was sharing some difficult feelings. Can you see how the team is around her offering her unspoken support, listening and concern? A real picture of palliative care in action. Some families are known over many weeks and months allowing real relationship building and trust. Othere are referred very late - though the network of local volunteers is helping prevent this. The teams offer an opportunity for training and mentoring as well as care for patients and their families. Areas of particular need have been identified such as psychiatric and psychological support, rehabilitation for spinal injuries; and these areas targeted for training and service development. A dynamic and responsive service - and an inspiration.

visiting impressions from Jan and Graham

2006-05-11T02:21:00.000Z

"Gods Own Country"

Just back from India we wanted to say a few words about our time with Mhoira in Kerala....

This trip was only for two weeks but in that short time we were challenged,inspired,suprised and blessed in ways we had not expected by this wonderful place and people. Kerala is a beautiful place,as are its people.Mhoira's descriptions can give you a real flavour,but going out to see for yourself you experience the sights sound and smells will challenge any preconceptions about India and in our case has left us humbled and much richer for our time there.

Mhoira organised much of our trip for which we are grateful and highlights of Kerala included a boat trip on the beautiful waterways which criss cross Kerala(called the Backwaters), travelling in old white "Ambassador" cars and crazy auto-riskshaws(the only way to travel!) a stay in a coffee and vanilla plantation in the hills of Wynaad complete with a bush safari and elephants,and lovely meals out with Mhoira's friends sampling the yummy South Indian food,and the warmth and ready smiles of the locals .We could go on!!...but the real highlight was seeing some of the work Mhoira is involved in and meeting some of the great people she works with.

In Calicut,like Kenny, we had a chance to see first hand how the original vision of pioneer Prof Rajagopal, and his team has continued and grown into an impressive and unique model of community involvement in assessing,treating and supporting people in need of Palliative Care.Graham and I come from a shared professional background of psychiatric nursing,engineering,statutory and voluntary social work and were overwhelmed by the sheer numbers,as well as skills and commitment of local volunteers who are an integral part of the project,and in some areas take a lead role.They come from a variety of backgrounds including, on our trip, a local primary school teacher and retired engineer.This level of community involvement is unique in my experience,and our time out with Mhoira and one of the home care teams,visiting patients in the rural areas around Calicut,was both moving and humbling.
If only we had this kind of commitment in our communities back home! We were also impressed by the commitment to training,and I was delighted to meet one of the psychiatrists involved in teaching volunteers psychological skills,particularly as he has worked in the same psychiatric service as me in Edinburgh!

The opportunities for training,as Mhoira has described already, are there,and having seen the commitment and enthusiam for it, as well as the potential to change whole communities we have come back challenged about our own work,and inspired by what Mhoira and others have and could achieve. Do go see if you can...and meantime get behind the work of Cairdeas. These are real people,like Praveen, who need support for training and equipping so that they can make a difference. Oh and if you do go....watch out....those homecare drivers will take you on a journey you won't forget!

Jan and Graham Beckett (Mhoira's sister and brother-in -law)

calicut

2006-05-08T07:12:00.000Z

You may have noticed how often I mentioned Calicut in my posts and newsletter. Let me tell you a little of the history of this pioneering service in Northern Kerala. In 1993 Prof Rajagopal, Dr Suresh Kumar and a small team formed the Pain and Palliative Care Society (PPCS) and began to develop a palliative care service based in the government medical college. A busy OP, with the words 'listen' pinned to the walls, was the focus with home care teams and link centre clinics. Negotiations with government made morphine available and a unique model of empowering faimiles and training volunteers developed. This was recognised with WHO demonstration project status as a model of palliative care for developing countries. Over the ensuing time this service has continued to evolve. In 2002 a movement known as NNPC (Neighbourhood Networks in Palliative Care) mobilised whole communities where the service was owned and run by the volunteers with input from health care workers. Perhaps I will tell you of this in a separate BLOG post. In 2003 a centre for education, training and in-patient care was opened - the Institute of Palliative Medicine. Much of the training is for volunteers with staggering numbers completeing basic and advanced training. This includes an innovative project to train trainers in offering psychological interventions as part of their therapeutic care. The nurse with a young patient on the left is Mina - one of the original team . Her smile and skilled care speak volumes. Praveen is a volunteer who has worked for 13 years in the PPCS and is involved in many of the training programmes. Here he is teaching communication skills. I have been involved in Calicut since my first visit to India in 1999, and it is always like coming home. This trip I have contributed to the BCCPM - a 6 week training programme for doctors (see picture)and the Fellowship programme for distance learning. The slogan for the PPCS sums it up - 'People for People in Pain' It is a place of ideas, energy, skill, inspiration and compassion. I am delighted to say that Cairdeas will continue to have a working partnership here and I will continue as visiting faculty to the Institute.

visit to vellore

2006-04-25T05:09:00.000Z

As I mentioned in a previous post I was able to make a trip to Christian Medical College(CMC), Vellore recently. This is a famous hospital and nmedical school in Tamil Nadhu started by a missionary doctor (Ida Scudder) over 100years ago. It has always had a vision to minister to the poor and suffering and is renowned both in India and internationally for it's excellence in medicine and education but also it's service to the community. Patients still travel from long distances to recieve treatment. As an illustration, I attended an oncology round where 4 out of 16 patients were from Tamil Nadh and another 4 from neighbouring states. The remainder were from distant places like West Bengal, Sikkim, Banglagesh, Assam, Mizoram and Bihar. (you might want an atlas to check these out!)
Palliative care services started 3 years ago and the small department is led by Dr Reena George. The picture shows the rest of the team, and my thanks for their warm welcome. Already there is an active inpatient and outpatient service with home care to the surrounding villages 3 times a week. An exciting new development is the building of a hospice and education unit a few km away. You can see the contruction work in the photo, with an expected opening date of August 2006. We had some great discussions as to the development of CMC as an educational hub for palliative care. It is well placed to offer an excellent and credible training base that can reach many areas where palliative care is in it's infancy. I am delighted to say we have agreed a joint project to support these developments and I will be dicussing these plans with the Cairdeas Trustees soon. As ever issues of practicalities and finance come into the equation but am optomistic that we will be able to proceed.

Easter Greetings

2006-04-20T05:46:00.000Z

Easter in India is very different. No daffodils or spring lamb or familiar church traditions. Especially as the Hindu New Year coincded with Good Friday. It was for me a chance to stop for a brief monent and consider the true meaning of life and salvation. I missed being able to be at church but was able to read the Easter story sitting on a beach overlooking the Indian ocean and watch the sunrise over the Kerala backwaters. Swimming at dawn, I was remembering that ancient dawn when Mary found the stone rolled away and the truth of Christ's resurrection began to be made known. What an amazing moment. My sister, Jan and her husband Graham arrived on Easter Sunday complete with M@S hotcross buns and chocolate eggs for the teams here. They are spending 2 weeks here and seem to be enjoying every moment.
I hope you all had a special time in whatever way you celebrate and sense the hope of a new spring and new life.

ASHA slum project

2006-04-12T11:39:00.000Z

I have had the privilege of visiting this project in Delhi on several occaisions and thought you might like to hear more. It is a community empowerment and development project bringing 'hope to those who need it most' Each Slum Colony starts a programme of empowerment and primary health care, education and community development with training and support from the ASHA society. Over the past 15 years the project has grown to include >250,000 people and is a resounding success. Figures for child health, immunisation, family planning, TB control, school attendance and maternal health are well above the national average for India - never mind the usual picture in a city slum. ASHA is based on sharing the love of Christ in action and as such shares much in common with Cairdeas. Dr Kieran Martin, the founder was challenged to support those who have so little future and hope and has been awarded the Padmashree for her services to the poor. Issue of chronic disease such as mental health and diabetes are now being addressed and we hope to work together on a palliative care needs assessment next year. Here are some photos that illustrate the environment and the sense of hope. They were taken on my most recent visit last week. The wee baby is being held with her road to health chart - a WHO method of monitoring child health. The water pump is one of 50 for a population of 50,000 - previuos to ASHA's support there were only 5!

glimpses of india

2006-04-08T04:24:00.000Z

I thought I would post a few pictures to give you a feel of life in India - just some of my observations about this facinating country. In fact, I will only give you some glimpses of Kerala this post. India is home to one of the oldest civilisations and more than 1 billion people. It is also a very young country, both in its population and it's recent independance. Kerala is a socialst state (the only state previously to democratically elect a communist government) with high literacy and an active civil society. It's language is Malayallam and is home to 35 milion people squeezed into a small land mass. It has a range of mountains (Western Ghats ), a narrow strip of land then the Indian Ocean. Known as 'Gods Own Country' the name Kerala means 'land of coconuts'. The backwaters region is unique and beautiful as seen by the first photos. Elephants might be seen in the game reserves, temple 2 festivals or even the street! Kids attend school smartly dressed - even if the transport is crowded. Food is light, tasty and unlike any 'Indian' takeaway you have tasted. Here is masala dosa - one of my favourite breakfasts. Lfe is always colourful, often frustrating, run on IST (Indian stretchable time) and invarably surrounded by warmth and friendlieness. Close your eyes and imagine hot moist air, spinning fans, scents of jasmine and spices, endless coconut palms, sunset over the Indian Ocean, tooting horns, crazy traffic, a cow causing a traffic jam, no personal space, ready laughter, bustling cities, vibrant colours of saris and the smile of a beautiful woman, and you have a glimpse of where I am. Come and see for yourself sometime!!

kenny's impressions

2006-03-31T06:42:00.000Z

I mentioned in my last post that my colleague Kenny Ferguson was here for 2 weeks running chronic oedema training. It was a crazy couple of weeks with very sucessful training and adventures gallore. The photo shows the course participants in Calicut. Here are Kenny's thoughts;

'firstly i would like to thank mhoira and Cairdeas for the
opportunity to work in and experience India albeit for a very
short time. nonetheless this proved to be one of the most
enjoyable and important experiences of my carreer in
palliative care to date. also a big thanks to mhoira for all
the background support work she did on my behalf which
ensured the smooth running of the course and for making me
feel so welcome. all of this background work and support made
it so much easier to settle in quickly and get on with the
work. my work focused on training the trainers in the
management of chronic oedema (a significant health problem in
India).these courses were offered from two centres, Calicut
and Cochin each course running over three days.i also spent
some time observing the work of the home care service offered
by volunteers up in the Waynad district of Kerala.this was
indeed a great example of palliative care for the community
by the community.i think india has a lot to teach the west
about the importance of strong family ties and community.

in the face of huge resource difficulties i was amazed at
the morale, committment, energy and thirst for knowledge
shown by both groups of nurses. we had great fun during the
courses with much moothie playing and laughing at ourselves.
hopefully the courses went well and we certainly initially
got some very positive feedback from course participants. a
lot of thought and discussions needs now to continue with
mhoira and our indian nurse and medical colleagues as to how
best continue to support oedema work in kerala into the
future. this was a very important and enjoyable (if
exhausting) experience for me.it reminded me of why i came
into nursing and particularly palliative care.while i went
out to india in a training role i know i learned more from
the nurses and volunteers i worked with than i could ever
give. it was my pleasure and
priveledge to work with such professional and committed
indian colleagues.once again thanks to them and to cairdeas.'

first cairdeas course

2006-03-18T06:51:00.000Z

A red letter day! I was joined this week by my Scottish colleague Kenny Ferguson from Moray. He has more than 25 years experience as a palliative care nurse, the last 15 in a community Macmillan role. He has also set up a chronic oedema service and we have been planning for him to visit India to assisst in training for some years. Advanced, chronic oedema is a major problem affecting the quality of life for many patients. It is usually related to diseases such as cancer and their treatments but in this part of the world filariasis is also very common. Kenny has worked hard to prepare a training programme focusing on 'training the trainers' If there is a pool of experienced and trained nurses they can continue the sharing of expertise. We spent a few days in Cochin then off to Calicut to repeat the training. Kenny has taken to India like a natural and it has been lovely for me to enjoy his enthusiasm and company. His Scottish banter and moothie have gone down a storm. I think his years in mountain bothies have prepared him well for adapting to India - a qualification I had not considered in our Cairdeas Consultants!! Here is a picture of the Cochin nurses and I will ask Kenny to add his comments for the next blog entry.

jaipur

2006-03-09T13:53:00.000Z

Hi from Jaipur - the pink city in Rajestan, the most royal Indian state. Dr Gayatri and I were invited to take a seminar at an important oncology conference. It was the first time in Rajestan that there had been a palliative care seminar at an oncology conference so the local team were very encouraged. There is only a small service here with a need to work together and try and develop some co'ordianation in training and networking. As ever we meet people who are committed to making a difference. We visited an inspiring hospice where 5 nuns run a very good unit with such care and compassion but with very little medical support and would so welcome further training. (see photo) We have been offered a very warm welcome if we were able to return and help with training and development. Rajestan is a large, spparsely populated state with many villages that are far from city centres such as Jaipur. As ever there is so much needing to be done to improve the lot of the poorest patients. Our hosts Dr Malti and Anjum were very generous and welcoming, helping us to experience some of the cultural highlights.

overdue update

2006-03-02T12:17:00.000Z

Hi again. A whole month has gone by. Apologies for the lack of entries but I have been having real internet access problems.

It has been a busy month. I have been teaching and training at cancer centres in Hyderabad and Trivandrum as well as day to day work in Cochin. Feb 9th-11th I participated in the IAPC international conference in Chennai which had the topic of Pain and Beyond - focusing on psychosocial and spiritual issues. It was a great conference and a chance to catch up with colleagues from the UK. There is a small cohort who come each year to support training. You may know people such as Dr Micheal Minton, Dr Ian Maddoks, Dr David Frampton, Judith Smith, Gilly Burn, Jeremy Johnstone and the team from Severn Hospice ... Some of us try dressing up -we looked good in our Chennai silk saris! Above is a photo of me and the Cochin team. They are delighted that they will be hosting the 2008 conference.

At Trivandrum I was joined by colleagues Dr Rosalie Shaw and Dr Cynthia Goh from APHN / Singapore which was a great chance to talk about wider palliative care issues.

I also had the chance to travel to rural Andrha Pradesh to visit a village ministry project (Indian Village Ministries ivm@sancharnet.in) run by old friends from Aberdeen Suresh and Roja, and meet a friend from my church back home, Peter Ross. Perhaps their project will involve palliative care in the future.

Tomorrow I am off to teach in Jaipur, Rajistan - the pink city. More in the next entry!

It is hot and humid and getting hotter - I would love a few hours in the snow. Hope my fellow Scots are not suffering too much this winter.

Cairdeas

2006-01-24T20:57:00.000Z

Hi

Forgive my lack of expertise on my first BLOG post.

This is my on-line diary helping me to keep in touch and inform about my role with Cairdeas. If you dont know what Cairdeas is then check out www.cairdeas.org.uk. We are a charitable trust that seeks to facilitate the growth of palliative care in the developing world. We will work mostly in supporting education and training.

As Medical Director of our new Trust I have two main roles. Firstly to help to develop the strategic planning and in doing so make connections with those involved in key positions in palliative care in the developing world. Secondly I have the privilege of offering my support in training and educational planning.

What am I doing now?

On Dec 31st I flew out of a cold and snowy UK to the country of India - arriving appropriately on the first day of the new year. I spent a few days in Delhi catching up with friends at the ASHA slum project before flying to the tropical south - Kerala.

A few words about palliative care in India. Since the 1980's there were hospice developments but these were only available to very few. In 1993 a clinic was started in Calicut, northern Kerala by Prof M R Rajagopal which sought to model a different form of palliative care delivery. Through an outpatient and home care service and more than 30 link centres 30-40% of the population were able to access help. Since then this service has been further developed by Dr Suresh Kumar and team to the NNPC (neighbourhood networks in palliative care) with the community (in the form of volunteers) running the service. More than 80% coverage has been obtained with this model.

Good news except that around 3% of India's population have access to pain relief and way less than 1% have access to a doctor working in palliative care. A recent estimate by Suresh and Dr Jan Stjernsward suggested only 100 full time doctors - that's for 1 billion population!!!!

So hence the need to get involved in training.

So what am I doing at the moment.

Cochin has sen the development of the first supervised Diploma - 2 years of structured training. I am here as visiting lecturer at Amrita Institute of Medical Sciences to support this programme and help with other courses such as the 6 week short course.

A few days after I arrived we had the first students pass the Diploma - well done to Dr's Biju, Biju(an orthopeadic surgeon!) and Sunil. It is an excellent course with tough standards so all were justly pleased. Dr's Robert Tycross and Rena George were external examiners. You can see the photo evidence.

I am busy supprting the 6 week training students. A recent review of training showed that more than 80% were leading services and teaching as well as taking referrals after only 6 weeks. Not surprisingly many feel out of their depth but the courage and committment are very impressive. I hope to be more involved with mentoring these young palliative care doctors. Incidently one current trainee is a Professor of Anesthetics so young in palliative care experience only!

Enough for now. My next few weeks involve taking part in the 13th International conference of the Indian Acssociation for Palliative Care and brief visits to help with training in Hyderabad, Calicut and Trivandrum.

When I was chatting with Jan Stjernsward (previous director WHO cancer and palliative care programme and responsible for the WHO cancer pain relief) about the desparate shortage of palliative care doctors he suggested I should 'spend the rest of my life doing something about it' That is just the essence of Cairdeas and it feels a tough challenge but still a privilege.