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.

Mulago Hospital, Kampala

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

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

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

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

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

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?