Friday, December 19, 2014

Soul's worth

Christmas is full of tradition; food, magical memories of Christmas past, food, parties, presents, more food, singing, joy, laughter and even more food. This is true here on the equator even though there has never been a 'bleak mid-winter' and the sun shines daily. I have my angels on the banana fibre tree, sung carols and eaten mince pies. Listening to an advent podcast I was struck by a meditation on the words of a well known and loved Christmas carol;
O holy night the stars are brightly shining, it is the night of the dear Saviour's birth. Long lay the world in sin and error pining till he appeared and the soul felt its worth.
What a wonderful picture; soul worth....a sense of value and validation and affirmation and grace in a world where there is so much pain and sorrow and conflict and grief. Again we are in a time where around the world there are disasters and conflict; many still dying of ebola, children killed in a school in Pakistan and the grinding reality of homelessness, poverty and loss.
Volunteers. MPCU and hostel party
A ward round in Mulago also shows the gamut of human emotions. We have just finished the examinations for our undergraduates and postgraduates in Makerere; nerves, hard work and the pleasure of seeing young colleagues grow and learn as well as the camaraderie of my examiner colleagues. We climb the hill to visit Betty who has been in hospital for many months but so wants to get home to see her young children this Christmas. She should finally get home tomorrow. Then there is Aloysius who needs treatment but how do we get him across the hospital site when he is so sore with the slightest
Enjoying our love feast Acholi food
movement and there is no ambulance available. Thanks to our volunteers who work tirelessly to help. Charles cant move his legs any more but has a caring family who need to learn how to nurse him and give his painkillers as they take it in turns to sleep under his bed. Little Kamau is full of smiles when we have our Christmas party even though he is getting his treatment for cancer daily. Women from across the region who are all having cancer treatment  joining Kamau and our MPCU team singing, dancing and of course eating food. My Lugogo church family share a love-feast with guest appearance from gospel music star Joyce Babiyre and of course sharing food (I love malakwang and sweet potato from our Acholi friends).
Sophie and Rachel in Kerala
Press in Guwahati
I am spending the next few weeks in Kampala and appreciating a new home (moved across the compound) and freedom from airports for a few weeks. I am reflecting on an amazing year. The past 2 months I have been in 7 different cites in India meeting old friends and colleagues and seeing how much they have achieved; huge congratulations Chitra Venkateswaran and the Mehac team, MR
Rajagopal and the Pallium India team and Dr Gayatri Palat and the MNJ team. Thanks too to Rachel and Sophie on their medical electives from Edinburgh who wanted to learn about palliative care
Moolchand parantha
BCH team Tezpur
in India and took time to float on the backwater with Auntie Mhoira. I was then joined by Dr Gursaran Purewal and Grace Kivumbi (MPCU), Dr Dan Munday (INF Nepal) and Dr Dinesh Goswami (GPPCS) and we travelled to Tezpur in Assam to evaluate the palliative care
programme in Baptist Christian Hospital. Inspiring and encouraging. Thanks Dr Jerine and your team and to the leadership and vision of Dr George Koshy and Dr Ann Thyle. Back to Delhi for a busy research workshop - you cant do better than a colleague saying it was 'perfect'. My favourite part was doing some practical research on the famous Moolchand parantha - mixed views on the hygiene but resounding positives from all who took the taste test.
What is at the heart of all we are doing in palliative care? What is at the heart of what we celebrate at Christmas? What is on our hearts? We search for meaning and purpose. We need to feel we have a role, that we belong, that we have significance, that we are loved. We want to say with our actions and our words you deserve our professionalism, our service, our friendship, our love because you have value and worth. When
Kamau's party time
our volunteers spend hours trying to get a patient the care they need working with the ward staff and families they are saying 'you are valuable and loved'. When our nurses share a quiet moment with a family as they realise this might be the last time Christmas is shared we are saying 'your life has meaning and you will be missed' When our doctors go the extra mile for someone who is in need and suffering we say 'you are made in the image of God; of infinite worth'. When we see and build the skills of our colleagues to enable them to offer values based care and model this in our team we say 'you can change the world one step at a time' When we see each member of our team as different, unique and valued we say ' together we can make a difference' We are also so conscious of the care and love from many across the globe for our work in Cairdeas as well as the wider work of palliative care. Our Christmas appeal this year focuses on building capacity through scholarships for Dr Jack Turyahikayo and Ivan Onapito. Please click on this link if you can support or link it to your friends.
Kerala beach
What gives your soul its worth? Perhaps you will be spending time with special 'people sharing, remembering and making new memories. Perhaps you will have moments of wonder; a snowflake, a
Sunset on the Zambezi
sunset, a smiling child, candles glowing glowing in the dark; child's voice singing 'Away in a manger'. I know I can get to this time of year and feel pretty weary; when the day to day frustrations combined with the pressure and busyness of life and cumulative burdens can seem overwhelming. I am so often aware of how often we fail to live up to our expectations and ideals and even just to keep up with the busy agenda. Yet this is a time of grace and renewal and hope. A time of hope and rejoicing because the Saviour has come and our souls have felt their worth...May you have a wonderful Christmas and full of hope for all 2015 will bring.
O holy night the stars are brightly shining, it is the night of the dear Saviour's birth. Long lay the world in sin and error pining till he appeared and the soul felt its worth. A thrill of hope the weary world rejoices, for yonder breaks a new and glorious morn. 

Monday, September 29, 2014

Refreshment in a dry land

Imagine 45 degree heat and 7 hours of teaching per day when all of your participants have not eaten or drunk anything since 3am. Add some of the most hospitable and generous people you have met with a heart to make a difference for the suffering and needy in their country along with amazing culture, colourful markets and fantastic food (after 730pm) and you have sense of my recent experience in Khartoum, Sudan during Ramadan. Dr Nahla Gafer, clinical oncologist and palliative care champion at RICK (Radiation Isotope Centre Khartoum), along with Dr Ahmed Elhaj, Dr Mohja Khair Allah, Mr Alfaki Suliman (from Soba hospital) and the rest of the team arranged the first palliative care training for oncology staff. This was in partnership with the Comboni College led by the inspirational Fr Beppino Puttinato and Fr Jorge Naranjo

They invited facilitators from the Makerere Palliative Care Unit to share their experience and to join the Sudanese team to teach and advocate for palliative care.  More than 20 students from 4 hospitals, representing several disciplines and levels of experience worked hard with a willingness to share and consider how they will implement their learning. We had key discussions and offers of support from the Ministry of Health non-comunicable diseases department and the WHO representatives. We met committed hospital directors  from the Khartoum Breast Cancer Center, RICK and Medani and heard of the progress in access to oral morphine and the hope to integrate palliative care throughout the hospital setting even beyond oncology and to dream of how this can be available in the rural settings of this large and varied country. We heard too of the challenges with high inflation, geographical distances, lack of training options available in
Sudan and the many upheavals politically in the region. For Mwazi Batuli and myself as well as student and Sudan enthusiast Emilie Myers it was an amazing 2 weeks. We miss the baobab and karkadi drinks, the rugag soaked in milk, the guiding skills of young Yousif, Arabic henna, bustling night markets, the sound of the muzzein folllowed by mouth watering  fatur and the deep

faith of Sudan's people but feel privileged to be part of this palliative care journey and look forward to being able to work together in the future. I return with my Sudanese name; Dr Mohira, a beautiful Dafuri basket on my wall, some Arabic henna, a few more Arabic words, a new tribal dagger to cut the haggis at my Burns night celebrations and the joy of renewing friendships, building new relationships and
see people transformed to influence and change their health systems. Shukran. Maybe next time we will get to explore more of this amazing country but to all the palliative care friends we wish you well and know you are going to do great things inshallah.
Anyone reading this and near Scotland this week we would love to share more of the work of Cairdeas 4th or 5th October. 

Friday, May 23, 2014

Daily life in Kampala

Often these posts are about travels and adventures rather than the day to day clinical rounds. Some of you asked for another wee peek into a typical day and some of the people who make life so rich, unexpected and challenging.
The traffic in Kampala gets worse and worse but if you get up before dawn, arm yourself with a large mug of spicy Indian tea and leave as the sun is just rising you can almost keep your sanity. The beauty of a soft red sun rising above the busy morning activity and the smart youngsters on the way to school makes getting up early worth it (almost). The small team office fills up as one by one everyone arrives though as it is rainy

season they can be delayed. For the past few years we have been privileged to have UK volunteers working with us and they add to so much to our great MPCU team. Anna has just left but Eilidh and Gurs are with us right now and have joined me on the early start. Each day our priority is the patients and families we support on wards throughout the Mulago site. Last year we saw more than 600 patients and their families and many many more were also supported through the volunteer and link nurse programmes. Today Mulago is as busy as ever but has got some smart new beds, mattresses and even hand sanitiser containers (not always full but a good step forward). The nurses look smart in their uniforms and red belts and seem to keep going even when the number of patients seems overwhelming. Let's visit some wards together. Here is a young girl from the west of the country who has had very traumatic events in her childhood and now has an unusual type of cancer and is receiving chemotherapy. Her parents are with her constantly to do all of her personal care and at least she is sleeping quietly today. We can now go and see a young man of 23 who has been diagnosed with liver cancer that is very uncommon in the UK but sadly common here. It is associated with hepatitis B and

perhaps one day vaccination can stop this cycle of infection, inflammation and cancer. Today we need to speak with him and his family and break the news about how far the disease has progressed. At least his pain is well controlled today with the help of oral morphine that is presently in good supply. Our next patient has several problems that are linked; stage 4 HIV/AIDS which drops the immunity and leaves people vulnerable to other problems such as the advanced TB he is being treated for and now a kind of cancer, Kaposi sarcoma. We have some  colleagues with us today who are going to be pioneers of palliative care in their Francophone countries; Tunisia, Senegal, DRC and Benin. Chedly from Tunisia has never seen a patient with KS which shows the huge difference in this continent of Africa. They are adding a whole new dimension for the round and stretching my rusty French language skills. Come with us too and see a young girl that has advanced heart disease (called endomyocardial fibrosis) that is fairly common here but very rare in the UK. She has responded to treatment overnight but remains very ill. We have suggested to her mother that we ask for Hospice Africa Uganda to help with her care at home and the mother claps her hands. Why? She is also a patient at Hospice and knows how much care and love they will offer. Still sad for this lovely family but glad Octivia from Hospice is on our round today as she is several times a week. Lastly we prepare to lead a clinical meeting, called the grand round, to talk about difficult conversations at the end of life to help our colleagues think about how to handle these situations and to explore the ethical issues   involved.  We are going to tell the story of a courageous little girl we looked after recently who agreed to let us share her words. She was very ill with advanced lung fibrosis and had many questions. Am I going to be OK? Why do other children get better and go home but not me? She also got
very frightened at night and asked 'Is Satan coming to get me?' 'Can you help me go to a church?' She was too unwell to go to church but we listened to her fears, supported her family, prescribed some medication to help her breathing and then suggested we brought church to her thanks to our great volunteers. They came with songs, stories, a radio, some ice cream, a children's bible and prayers. Holistic care in action. It was also encouraging to see how many came to the teaching session and were willing to explore and learn how to respond to these very important questions. It underscores how much our colleagues appreciate palliative care and are willing to develop their own skills with enthusiasm and compassion.
Its been a busy day and now we have plenty paperwork, examinations to set and mark, panicked students to support who are trying to get their research work in for marking, planning for our next THET project support visits to Uganda, Zambia, Kenya and Rwanda, looking to see how we can manage the budgets this year, answering the hundreds of emails and of course the prospect of battling with the Kampala traffic to get back home to my wee house.

Sunday, March 23, 2014

Odisha experience, chilly Delhi and Assam adventures

Mentorship participants
Warning; Delhi in January is really quite chilly. Picture me going to sleep with a wooly hat and wrapped like a parcel in scarves. What was not chilly was meeting again with the Emmanuel Hospital Association palliative care colleagues and sharing together about mentorship.  I think
Himalayas by air

Baptist Hospital, Tezpur
this is one of the most crucial areas in building capacity. Mentorship helps another become more self aware, builds confidence, challenges and supports the identification of areas needing growth and facilitates mobilising resources and making changes. As ever Chitra and I worked together joined by Ann Thyle and Marion Mathias who is a GP from Herefordshire. We are seeking to support the development of mentorship within EHA and to offer some further external mentorship support though colleagues such as Marion. Straight away we visited one of the dedicated and visionary leaders and her team at Baptist Hospital Tezpur, but this will be retold more in a future post. However, Marion is soon doing another big challenge; the Paris Marathon. Please consider giving to Cairdeas through her justgiving page. Many many thanks Marion and power to your knees!!
Claire and Beci
With Anjum, Dinesh at IAPCON
We then travelled to our 3rd state of Orissa, joined by a team from MPCU, Beci, Claire, Alastair, Julia and Ivan. I was so so proud of our team presenting 7 abstracts and 1 paper and being recognised with several prizes. EHA also presented and also shared prizes (well done Ann)and Chitra's team presented some innovative work in the area of mental health with similar recognition. It is not just about prizes of course but the opportunity to share, have work appreciated and affirmed, encourage others and continue to see palliative care developed and lives changed. Thanks to the teams from AIIMS and Bhubaneswar for organising a great conference.
For Ivan it was a journey of first experiences, not least being the sole black man at the conference. He tells me he now knows how difficult it is when people stare at you all the time because your skin colour looks different!! He has shared some of his experiences for this post.
MPCU team in Bhubaneswar
'I was in India from the 11th-20th of February 2014 to attend the 21st Indian Association of Palliative Conference as part of the Team from Makerere Palliative Care Unit. I coordinate the team of volunteers at MPCU who are invaluable in providing practical psychosocial and spiritual support to the patients with palliative care needs. There were so many firsts for me; it was my first time to travel by aeroplane, first time to present a paper at a palliative care conference of any kind and overall it was a lifetime experience for me. I presented a paper on “Integration of Volunteers within a Hospital setting” giving the experience of Mulago Hospital where I am based. I was quite nervous since it was my first time to make a presentation at a conference of such a magnitude. I was even more shocked at the awards ceremony when I won joint first prize for my presentation. I enjoyed interacting with palliative care practitioners from various countries and India especially that has good volunteer palliative care services. It was a rich experience for me.
Ivan and Alastair at the Taj
It was not only work, together with my colleagues, we were able to experience and see some of the historical monuments of India, eating their delicacies and experiencing bits of their culture. My highlight was our visit to the magnificent Taj Mahal which left me in awe.  India is a very wonderful country, the people were warm and friendly. Overall it was an experience of a lifetime that I will live to tell my children about, and I want to appreciate all those who made it possible for me to attend the

conference and special thanks to my Boss who has been a good mentor to us all at MPCU'
As you know Ivan is one of our team members who is receiving a Cairdeas scholarship to continue his theological studies and to attend this conference. Thanks to all who contribute so faithfully in so many ways.