At Cairdeas we are committed to offering support for staff development through scholarships that have a direct impact on patient care. These scholarships make a huge difference to the community and we welcome any donations to allow this work to continue and expand.

Toko Friday is part way through his training via one such scholarship and he describes the difference it is making to his life and the lives of others.

“My name is Toko Friday and, thanks to Cairdeas, I have started a degree in social work and social administration in Kampala.  Once qualified, I will continue to apply to my work in the field of palliative care. Already I am learning so much, and enhancing my knowledge and skills to empower me to perform better in my role asa volunteer coordinator.  This training, alongside my daily work, is showing much fruit.  I am learning how to research and write volunteer policies and procedures, including risk assessments; this includes describing appropriate volunteering opportunities and writing up roles based on the needs of the organisation.  I am learning how to manage budgets and helping with some fundraising to sustain our project. In any one day I can be reading up on legislation and policies related to volunteering or writing monitoring and evaluation reports for funders.  There is variety in the course, for sure!”

“The training supports my ongoing role in the Sanyu Ministry at Lugogo Baptist Church where I work closely with the staff from Makerere & Mulago Palliative Care Unit and the Elders board.  Together, we match the skills of volunteers with the hospital’s needs for assistance. I arrange for volunteer orientation and training and I schedule all volunteer activity.  I keep records on how many volunteers we have, when they volunteer and for how long.  For me, the main gift in the work I do is the pastoral care and support to I am able to offer patients.”

“A few weeks ago a young woman whose child was very ill and then died, came to thank the church for all the support she was given during this very difficult time.  She said, ‘I thank God for this team’. Another patient told us, ‘I want to thank God for bringing you into my life, I feel loved and cared for.’”

“Overall, the most important thing for me is being able to create a difference in the lives of patients and families through listening to their worries and concerns and being able to bring hope and joy by creating a smile on their faces amidst pain and suffering.  This work is indeed, a blessing.”

If you are able to help Toko, and others like him, to build their capacity in delivering quality palliative care in Uganda, please consider making a donation to the work of Cairdeas.  Click here to find details of how to donate to specific appeals or to set up a one-off or regular donation to the work of Cairdeas.

Cairdeas is delighted to have amazing partners in Uganda who are forging ahead with plans for the next five years. The newly launched Palliative care Education and Research Consortium (PcERC) working through a partnership with the Makerere & Mulago Palliative Care Unit (MMPCU) have just launched their next five-year Strategic Plan.  Mapping the way ahead for the period 2018-2023, the plan presents clear and achievable strategies under five thematic areas: Clinical Service Provision; Education; Research; Advocacy; and Sustainability.  You can find a copy in the Resources section of our website under 'MMPCU and PcERC'

Exemplary patient care is the ultimate aim of good clinical service provision.  Under this first theme, the plan describes how physical, social, psychological and spiritual needs will all be addressed in caring for patients.  This will require integration and joined-up working within and across primary and hospital care teams.  One patient said, “They talked to me, encouraged me, and helped me to get medication.  The pain has become manageable.  There was tremendous improvement.  I did not feel like the way I was when they first found me.”

Strand two of the strategic plan, education, is concerned with providing education, training and capacity building for healthcare workers, allied health professionals and volunteers at all levels. PcERC is aligned with the education vision of MMPCU, Makerere University, and Uganda’s Ministry of Health, all of whom seek to integrate palliative care competences across health and social care curricula.  The education strand of the strategic plan seeks to go further in ensuring palliative care is also mainstreamed into theology and community programmes.  This change of approach has already affected many doctors and nurses for the better, with one saying, “Palliative care has made a huge impact:  I now see the patient as a person and not a disease.  I don't avoid difficult conversations.  I see them as part of a family.  I do holistic care.  It was not like that before.”

The third element of the plan, research, seeks to continue to expand the evidence-base for palliative care by building on research collaborations within and outside palliative care service provision. Understanding what works best for the patient, what delivers best outcomes, must be underpinned by solid evidence.  PcERC will continue to promote the research culture already prevalent amongst its partners, and seek to review, disseminate, and publish findings with a view to influencing and improving policy and practice.  Speaking of their hunger to ask questions and find out more, one researcher said, “The training, whilst I was doing my Bachelors in palliative care, has helped me to continue with research, trying to find out: if I do this, then what?”

Advocacy to enhance and promote academic and clinical credibility for palliative care, is the fourth strand of the strategic plan. PcERC will seek to work in partnership to advocate for Universal Health Coverage, acting as a voice for those most vulnerable groups living with chronic illness such as: migrants and refugees; children and the elderly; those in need of legal support; and those affected by poverty.  PcERC pledges to work collaboratively both in Uganda and internationally and to continue to advocate for those who are denied any or adequate palliative care treatment. A senior nursing colleague in Northern Uganda who is part of PcERC and Cairdeas partnership with Peace Hospice, Adjumani spoke of what she has seen through the work of palliative care: “Someone needs to speak for the voiceless.  When help comes, people change, then hope appears suddenly like the sun.”

There is no decrease in the number of people requiring palliative care and so the final element of the strategic plan - sustainability - is essential in ensuring the continuing needs of patients are met. PcERC seeks to develop a well-resourced palliative care unit, with sufficient personnel and infrastructure capable of supporting a Ugandan-led palliative care programme into the future.  This will require effective and responsible use of financial resources, good governance, and robust monitoring and evaluation systems.  PcERC will also, where appropriate, seek to attract grants, consultancy projects, and partnerships that will add to its financial sustainability and growth. 

Grace Kivumbi, a member of the Board of Directors for PcERC said,“I see this as an opportunity to grow and expand our services to other institutions were many patients are suffering in pain but without access to the much needed palliative care but also as a means towards sustainability of the service.” 

Key to this is the establishment of sustainability and PcERC and MMPCU is working hard with University and MOH colleagues. However it is also seeks to develop a direct donor network. Would you like to be involved in directly supporting this work or to give to Cairdeas as we seek to strengthen partnerships and sustainability?  Think about donating here.

MPCU senior advisor and PcERC chair, Dr. Mhoira Lengspoke of the “privilege it is to have been invited to lead developments of the past 10 years and now to see PcERC launched and moving forward.  We are praying the current significant resource challenges have some movement and that the amazing MMPCU team can continue to grow, train, inspire and care for those in need.”

Sometimes called ‘the father of palliative care in India’, Dr M.R. Rajagopal was in Edinburgh this week as guest of honour at a screening of a documentary on the achievements of his own extraordinary life.  Entitled, "Hippocratic: 18 Experiments in Gently Shaking the World", it was hosted by EMMS International.  The rapt audience, who had gathered in Royal College of Physicians, were soon to learn the truth of an introduction that described Dr. Raj as: “passionate, not timid; gentle, but effective.”

Originally from Kerala, in the south of India where he started his pioneering work, he is now the Chairman of one of the world’s largest networks of palliative care provision – Pallium India.  Long time friend of Cairdeas, he has a close personal and working relationship with Cairdeas’ Medical Director, Dr. Mhoira Leng, and Cairdeas recently supported his visit to Uganda as the keynote speaker at their 10th anniversary conference.

Both his sincerity and passion are clear in everything he says and does.  “Pain relief medication isthere,”he told us, “it’s just not getting to those who need it.”

He spoke openly and honestly about the significance of the Hippocratic Oath, and how its principles underpin and drive his work.  He quoted elements of the oath verbatim, wrapping himself in its mantra of care and dedication:“I will remember that there is art to medicine as well as science, and that warmth, sympathy, and understanding may outweigh the surgeon's knife or the chemist's drug.  Above all, I must not play at God.”

Without doubt, access to pain relief medication was highlighted as an enormous issue but so, he told us, was one’s attitude to serving their patients. “We have the power to destroy with a few words, or to lift up with a few words.”   He guarded against the medical profession becoming trapped in their heads and detached from their hearts as he emphasised that the treatment of the person is as important as the treatment of the pain. 

Again and again, he stressed how ‘good’ palliative care must treat the patient with care and respect, not simply treating them as a receptacle and ‘attacking’ a disease.  Human beings, he told us, are much more than just containers of disease.  In a room filled with doctors and nurses he reminded those present from the caring profession that they are in a position of ‘huge privilege’; but one that requires empathy, one that asks you to walk in the shoes of another, one that requires you to understand the suffering of fellow man.

Over the years Dr. Raj has drawn much inspiration from his fellow countryman, Mahatma Gandhi, whom he often quoted.  “Recall the face of the poorest and weakest man you have seen, and ask yourself if this step you contemplate is going to be any use to him.”  This line from Gandhi informs Dr. Raj’s decision making every time as he strives to serve those in the depths of poverty with nothing; a poverty, he told us, which Gandhi called, “the worst form of violence.”

Towards the end of the film, Dr. Raj said very simply: “When I started to work in palliative care, I started to learn about life.”  If you ever need a reminder as to why you are working in palliative care, or why you are supporting the work of those delivering palliative care, please get your hands on this film and watch it.  It will teach you so much about life.