19 February 2021
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 programmes for health and community care workers, policy development and mentorship, requires a substantial budget which at present the Gambian Ministry of Health (MoH) is currently 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, I was inspired 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 under its Africa Grants Programme provided an ideal opportunity to begin a plan for paediatric palliative care. We developed an application in collaboration with a number of UK and African partners and, following introductions by the 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 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 in The Gambia. The goal of the project was to provide the evidence needed to establish and integrate paediatric palliative care training and service delivery into health services in the Gambia and to draw together and strengthen the small community of clinical and health staff with an interest in paediatric palliative care.
As part of the needs assessment, we conducted semi-structured interviews were performed involving 17 staff working with children in 4 different hospitals and a health clinic. to understand the need for children’s palliative care in The Gambia and to assess if any services are currently being provided .
In these interviews, local nurses and doctors expressed their concern that children often have surgically curable diseases, such as cardiovascular disease, but no access to surgical services. As a result, they suffer and die in significant pain.
All interviewees reported a huge need for Palliative Care services for children and stated that 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.
‘’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.’’ – Mansur sowe project lead coordinator Gambia.
The partnership worked well in highlighting paediatric palliative care to nurses and paediatricians and in measuring the desire for training in all aspects of palliative 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 a very exciting programme which had significant MoH profile and also media coverage. Following the training, health workers had a better understanding of paediatric palliative care, common symptoms and their management and end-of-life care.
Prof Liz Grant from 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’.’
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 achieving sustainable children’s palliative care services in 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, minister of Health Gambia Dr samateh, 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.
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. Now is the time for paediatric palliative care.
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