Researchers found that NHS provision of this specialist family support is “patchy” across local areas with gaps in care being picked up instead by charity run hospices.
Gaps in specialist palliative knowledge and training, emotional wellbeing support as well as help when older children transition from young people’s to adult support are among challenges raised by 100 families surveyed for the research.
Clinical commissioning groups (CCGs) were also involved in the research carried out on behalf of Lancashire-based Derian House Children’s Hospice.
All families spoken to use its services and the CCGs involved are based in the North West of England.
One representative of Chorley, South Ribble and Greater Preston CCG highlighted the need for specialist training for health professionals, saying: “There is a whole raft of provision, but how confident and competent they are in managing end of life pathways is questionable”.
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