SPECIALIST palliative care for children in Wales is fragmented and fragile, and a separate plan for its implementation is required to take account of youngsters’ specific needs.
That is a key message of a new report from children’s hospice Ty Hafan and the Welsh Institute for Health and Social Care, launched by health minister Mark Drake-ford yesterday.
It details a system-wide review of services available for children who need specialist care throughout their lives, highlighting progress already made, and providing recommendations.
The report describes how services for children expected to die in childhood and their families differ considerably from end-of-life care for adults.
Excluding new-born babies, there are at any one time 1,050 children in Wales who would benefit from specialist paediatric palliative care. Around 10 per cent will die in a year.
The report suggests that the relatively small numbers of such children in need of care has resulted in their needs becoming absorbed in a wider approach to palliative, end-of-life care.
Commitment across the NHS and from specialist clinicians is highlighted, and it describes how the system of care is built around a small number of highly committed individuals working across complex structures, hence its fragmented and fragile nature.
Recommendations include developing a Paediatric Palliative Care Implementation Plan to run alongside Wales’ existing End of Life Implementation Plan.
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