More paediatric palliative care nurses are needed in Wales to provide children and young people with end-of-life care, a report by the University of Wales and hospice Ty Hafan stated.
Palliative care for children and young people in Wales: meeting future needs found that there were approximately 1054 children, excluding newborn babies, in Wales who require specialist palliative care services, with an estimated 10% of them dying each year.
However, limited resources means that there are just five paediatric palliative care specialist nurses covering the whole of Wales, despite the report identifying nurses as a key component of multidisciplinary palliative care teams. The report cited previous research (the Sugar Report, 2008, into palliative care planning in Wales), which found that sufficient staffing levels of community nurses were necessary to ensure that as much care as possible took place in the child’s home.
The 2015 report suggested that the provision of children’s palliative care does not have the same status as adult palliative care. It recommended that the Welsh NHS establishes a separate paediatric palliative care implementation board, or recognises the needs of children on the existing End- of-Life Care Implementation Board.
Ty Hafan’s deputy chief executive Jeremy Jackson said: ‘The numbers of families affected might be modest but the impact of the services and the care we all provide to those in unimaginable circumstances is enormous. Developing a better understanding of how paediatric palliative care in Wales must evolve to meet future needs is essential to maintain the quality of care, extend the service and maximise its impact.’
Other recommendations in the report include establishing performance measures for palliative care in different age groups, and improving the communication between health and social care services. The report identified a need for a greater understanding of how children can make successful transitions into adult palliative care services.
A 24-hour telephone service for parents and carers was also posited as a way to improve palliative care for children and young people. The report stated that healthcare professionals could provide information on symptom control and other palliative care issues to support parents and carers. However, the report said that the proposal was unrealistic unless funding and staffing commitments towards the service were made.