Written by: Mansur Sowe, BSc, HND. Directorate of Public Health Services Ministry of Health and Social Welfare, The Gambia
Paediatric palliative care services in low-income countries compete for resources with many other priorities both in paediatric health services and within the whole health system. Their provision is desirable and the development of a sustainable service that would include advocacy, training health and community care workers, policy development and mentorship, requires a substantial budget which at present the Gambian Ministry of Health (MoH) is unable to provide.
When I heard Mrs Lyn Gould from the Butterfly Hospice in China give a presentation on caring for children with palliative care needs this inspired me to explore ways of starting up a palliative care service in The Gambia which has a large unmet need of children living with life-threatening and life-limiting conditions. On enquiring about the process of initiating such a service, Mrs Lyn Gould, referred me to the International Children’s Palliative Care Network (ICPCN) for technical support, and discussions between the ICPCN and MoH commenced. We compiled a project plan but unfortunately, there were no funds to implement it. The timely call by THET* for start-up grants provided an ideal opportunity to begin a plan for paediatric palliative care. We developed an application in discussion with a number of UK and African partners, and following introductions by ICPCN, we initiated a new partnership with the University of Edinburgh with a long-term view to develop the much-needed children’s palliative care services in The Gambia.
This made it possible for the MoH in conjunction with the University of Edinburgh Global Health Academy and the Paediatric Association of The Gambia to set out to deliver a needs assessment for paediatric palliative care in five different hospital settings. The goal of the project was to provide the evidence needed to establish and integrate paediatric palliative care training and service delivery into the health service and to draw together and strengthen the small community of clinical and health worker staff with an interest in paediatric palliative care.
Mansur said ‘’Knowing that we are lacking everything for children’s palliative care services in The Gambia after the needs assessment, it stimulated me to strengthen collaboration with partners, and opted for further training on paediatric palliative care so as to champion the development of a sustainable children’s palliative care services in The Gambia.’’
All interviewees reported there was a huge need for Palliative Care services for children and the lack of care was a national problem, as currently there are no services available. Most noted that this was distressing for patients, families and health professionals.
Our small project received support from the Deputy Head of the Paediatric Unit EFSTH (Dr Makalo). He gave a statement noting that dealing with children diagnosed with terminal conditions in hospital wards without providing any palliation is very discomforting to cope with. He looks forward to sustainable children’s palliative care services.
In the Gambia, after Protein Energy Malnutrition, cardiovascular disease is the highest reported cause of mortality. In the qualitative interviews we conducted, local nurses and doctors expressed their concern as they are aware that these children often have surgically curable disease but no access to this service, and they suffer and die in significant pain.
The partnership has worked well in highlighting paediatric palliative care to nurses and paediatricians and to measure the desire for training in all aspects of palliative care. Following some training, health workers have a better understanding in defining paediatric palliative care, common symptoms and their management and end-of-life care. Whilst we had planned a training programme onsite this had to be changed to an online programme due to COVID-19. However it went ahead and was very exciting training. It had had a significant MoH profile and also in the media. Now is the time for paediatric palliative care! Prof Liz Grant of the University of Edinburgh stated
“I almost wept when I was participating in this training programme at the end of November as I listened to the commitment of partners in working to build up paediatric palliative care against so many odds. Partners spoke of the urgency to deliver services. We have so much to learn in Scotland on how we can work together to understand the larger challenges of our world’’.
I believe that this partnership will be the start of greater collaboration in improving children’s health and wellbeing in The Gambia and we look forward to ongoing partnership with the University of Edinburgh, the ICPCN and the Paediatric Association of the Gambia.
I acknowledge the efforts of Prof Julia Downing, Prof Liz Grant, UK volunteers Dr Deborah Shanks, Dr Malcom Macrae and their Gambian counterparts Dr Jainaba Sey and Dr Lamin Makalo, for supporting me through the THET project, which has identified a great need for children’s palliative care in The Gambia, and has improved understanding of trained healthcare workers on defining and managing paediatric palliative care.
Who are THET?
THET are a UK charity and have a vision of a world where everyone has access to healthcare. We achieve this by training and educating health workers in Africa and Asia, working in partnership with organisations and volunteers from across the UK.
Over the past nine years, we have partnered with over 130 NHS Trusts, Royal Colleges and academic institutions. We work closely with the British government and are an organisation in Official Relations with the World Health Organization. In the past four years alone, over 100 NHS institutions and 2,000 NHS staff have provided more than 95,000 days of their time to work with colleagues overseas.
This work brings benefit to health systems in low and middle-income countries but is also having a beneficial impact on the NHS, as NHS staff return home with increased knowledge, improved leadership skills and a greater understanding of how to innovate in delivering healthcare with limited resources.