Christmas greetings 2008

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

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

World Day

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

mizoram

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

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

social work consultancy - irene nicholson

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

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

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

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

pallium partnership - refresher course

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

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

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

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.