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Seriously ill children face ‘postcode lottery’ of support across England

11 July 2016

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The majority of children with life-shortening conditions do not have access to children’s palliative care, according to a UK children’s charity.

Together for Short Lives found, through a series of Freedom of Information requests to local authorities and clinical commissioning groups (CCGs) that 17% of CCGs do not commission children’s hospices.

Of that, 4% wrongly say that only NHS England can commission children’s palliative care, including NHS Scarborough and Ryedale CCG, NHS North East Hampshire and Farnham CCG, NHS Eastern Cheshire CCG, NHS Canterbury and Coastal CCG, NHS Aylesbury Vale CCG and NHS Ashford CCG.

Local authorities and CCGs have been legally obliged to jointly commission services for children with special educational needs and disabilities (SEND), including those with life-shortening conditions, since the introduction of the Children and Families Act 2014.

However, 81% of local authorities are failing to plan and fund palliative care for children and young people.

Meanwhile, another 4% of CCGs refuse to commission children’s hospices because they are charities, including NHS Hillingdon CCG, NHS North East Hampshire and Farnham CCG, NHS North Hampshire CCG, NHS South Kent Coast CCG, NHS Southampton City CCG, NHS Thanet CCG.

In the statement the charity highlights the emphasis both the Government and NHS England have put on the role of charities in providing health and social care services.

There are approximately 40,000 children and young people with life-shortening conditions in England.

However, the report also found that 27% of CCGs are failing to commission community children’s nursing out of hours.

This means that children with life-shortening conditions have to be admitted to hospital if their health deteriorates during evenings and weekends, placing an added burden on hospitals and families.

Barbara Gelb OBE, chief executive of Together for Short Lives, said: “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.

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

“We already know that children’s hospices in England receive on average only 10% of their funding through CCGs, far less than the 30% adult hospices receive. Yet children’s hospice services provide vital lifeline care that saves the NHS millions.

“This survey starkly reveals the shortfalls, whilst also recognising those instances where CCGs and local councils are getting it right. We need to see many more such examples and I make a personal plea to health and social care commissioners across England to work with us to better plan and fund lifeline services for children with life-shortening conditions.”