Date published: 12 November 2017 by Jessica Homer

Rainbow Trust Children’s Charity welcomes the new report ‘Commissioning children’s palliative care in England: 2017 edition’ from Together for Short Lives launched on Sunday 12 November.

Based on Freedom of Information Requests, the report describes what clinical commissioning groups (CCGs) and local authorities are funding and providing for children with life limiting and life threatening conditions and their families.

The report highlights clearly that children’s palliative care commissioning across England is inconsistent and that in many areas commissioners are failing to plan and fund adequate support for families. In some areas community children’s nurses are not being commissioned at all and in other areas community children’s nurses are not being commissioned out of hours and at weekends, when families often need additional support.

Additionally three quarters of local authorities are not commissioning voluntary sector children’s palliative care organisations, such as Rainbow Trust, to help families caring for a seriously ill child.

Anne Harris, Director of Care for Rainbow Trust, responding to the report said, “We are pleased to see this report from Together for Short Lives is shining a light on the gap between the support that families need and the services that are actually being funded by local decision makers.

“We are deeply disappointed to see that almost half of CCGs are not implementing the government’s end of life care choice commitment and that only a third are undertaking the 2016 clinical guidance for children who need end of life care.

“The report echoes our own experiences working with over 2,000 families across England who regularly tell us that their total care needs are not consistently being identified and met by statutory sources. Many seriously ill children need care 24 hours a day, seven days a week but only a small percentage of CCGs are providing round the clock community care, which is not acceptable and leaves many families struggling to cope.

“Through our nine care teams Rainbow Trust helps as many families as we can, emotionally and practically, but we only receive three per cent of funding from statutory sources from a handful of local authorities. We know there are many more families who could benefit from our services if local decision makers put the needs of seriously ill children and their families at the heart of the commissioning process.

“We urge decision makers to make funding for all types of children’s palliative care a priority so that families are not left to cope alone.”