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Uncertain NHS grant future threatens hospice care for seriously ill children

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UK children’s palliative care charity Together for Short Lives is calling on the government and the NHS to protect and extend children’s hospice funding in England #ForTheChildren. The call comes as the charity releases a new report to mark Children’s Hospice Week (20-26 June) which shows a wide variation in funding for children’s hospices in England from local NHS bodies. As costs rise due to inflation and workforce shortages, lifeline hospice care for seriously ill children and young people could be put at risk if NHS England do not commit to providing the Children’s Hospice Grant as a central funding stream beyond 2023/24.

Together for Short Lives welcomes the planned increase in the NHS England grant to £21million in 2022/23 and then £25million in 2023/24. However, officials are refusing to commit to protecting and extending the grant as funding stream distributed centrally by NHS England after 2023/24. Children’s hospices are already warning that if they were unable to access the grant in 2024/25 and beyond, they would be forced to cut vital care and support for children and families:

  • nearly one in five (18%) would cut end of life care
  • over a quarter (27%) would cut symptom management services
  • nearly two thirds (64%) would cut short breaks for respite.

The report, published today, highlights the important progress made in NHS funding for children’s hospices in recent years. The government and then NHS England have provided a central grant to children’s hospices since 2007, which in 2021/22 was worth a total of £17million. On average, it represented around one pound in every six of spent by children’s hospices on the care and support they provide (15%).

The grant is a vital funding source amid significant variations in the way children’s hospices are funded by local NHS organisations (clinical commissioning groups, or CCGs) and local authorities. While average funding from CCGs represented one pound in every five spent by children’s hospices in 2021/22 on the care and support they provided (an average of £689,000 for each children’s hospice from CCGs, an increase of 38% compared to 2020/21), the amounts received by individual children’s hospices varied greatly: half of children’s hospices (50%) saw their CCG funding decrease between 2020/21 and 2021/22. Nearly one in ten (9%) children’s hospices received over half of their charitable spending from CCGs, while one in five (22%) received five per cent or less of their charitable spending from CCGs.

Children’s hospices are charities and also rely on voluntary income to sustain their lifeline services. On average, just over 60% of their charitable expenditure was funded by sources other than the NHS and local authorities in 2021/22.

On average, children’s hospices expect their charitable expenditure to grow by over one fifth (22%) between 2021/22 and 2022/23. Children’s hospices in England have higher vacancy rates relative to the NHS [1]; as inflation rises and children’s hospices compete with other health providers to recruit and retain the staff they need, children’s hospices now rely on the larger Children’s Hospice Grant.

Andy Fletcher, Chief Executive of Together for Short Lives, said:

“The increase in the Children’s Hospice Grant has been hugely welcome in giving children’s hospices more stability. It is vital that it continues so that children and families get the lifeline support they need. Children’s hospices provide vital care and support to a growing population of seriously ill children, young people and families who have an increasingly complex range of needs. They offer lifeline physical, emotional, social and spiritual support and help children and families to make meaningful choices about care in hospices and at home. In doing so, they take pressure away from overstretched hospital services.”

“Children’s hospices are charities and need sustainable funding from the NHS, local authorities and charitable sources. I welcome the progress that the government and NHS England have made on children’s hospice funding in recent years. The new duty on the NHS to commission palliative care for children and adults is an important opportunity.”

“However, with patchy local NHS funding, soaring inflation and an uncertain economic outlook, ministers and officials must maintain the grant as a ringfenced, centrally distributed funding stream from NHS England #ForTheChildren. If they fail to do so, children’s access to crucial services like end of life care and short breaks could be put at risk. Seriously ill children, for whom time is short, do not have time to wait for hospices to receive this reassurance.”

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