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Children’s palliative care commissioning a 'postcode lottery'

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Children with life-shortening conditions face a “postcode lottery” of support across England, a survey by a leading UK children’s charity has found.

Local authorities and clinical commissioning groups are failing to commission vital local services, including community children’s nurses, children’s hospices and specialist medical services, according to Together for Short Lives.

More than a quarter (27%) of CCGs do not commission community children’s nursing out of hours, according to the charity’s findings.

”The overall approach to children’s palliative care is at best inconsistent and at worst typified by ignorance”

Barbara Gelb

This means children with life-shortening conditions may have to be admitted to hospital if their health deteriorates during evenings and weekends – placing further unnecessary cost and burden on hospitals and families, it said.

It called on the government and commissioners to work with the charity to address this shortfall and better plan and fund vital services for seriously ill children, young people and their families.

The findings are based on a series of requests made to CCGs and local councils in April by the charity under the Freedom of Information Act.

A new interactive map and rating system reveals how they are performing in providing support to 40,000 children and young people with life shortening conditions across England.

”The government and NHS England [must] respond by writing to CCGs and local authorities to urge that they now commission care for these children and young people”

Barbara Gelb

Four out of five (81%) of local authorities are failing to plan and fund care for children and young people with life-shortening conditions, according to the fundings.

Local authorities have a legal duty to provide short breaks for disabled children yet still around one in seven (14%) do not commission these services, the survey found.

Overall CCGs performed better than local authorities, with the vast majority of them (93%) commissioning children’s palliative care. However, nearly one in five (17%) do not commission children’s hospices to provide care.

Seven CCGs (4%) said they did not commission them because they were charities, despite government guidance emphasising the important role of charities in providing health and social care services.

Meanwhile, the charity identified a “responsibility vacuum”, with six CCGs (4%) wrongly claiming that NHS England is the commissioning body for all children’s palliative care.

“These findings show that, despite some good examples, the overall approach to children’s palliative care is at best inconsistent and at worst typified by ignorance,” said Together for Short Lives chief executive Barbara Gelb.

”It’s a postcode lottery, with many children and young people being denied the support they need,” she added.

“The public overwhelmingly supports more funding to help these children and I call on the government and NHS England to respond to this by writing to CCGs and local authorities to urge that they now commission care for these children and young people who frankly don’t have any time to wait,” she said.

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Readers' comments (2)

  • Well, 'pretty awful situation but I'm not surprised' is my comment - end-of-life care is both patchy and also tends to be 'not well joined-up' for adults, so it doesn't surprise me that there are also problems with the care services for dying children.

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  • It's such a shame when there are simple answers, better recruitment of nurses, bigger numbers, better resources in the community setting, integrate care more effectively. we need bigger investment in the community, more effective link ups of services, investment is the key, you have to build the house and then maintain it!!

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