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Children’s hospice care at risk as concern grows for key NHS grant

News and comment

Earlier this year, NHS England (NHSE) told children’s hospices in England that the vital £25 million grant they receive – the Children’s Hospice Grant – will come to an end this year. In response, we are calling on the Government and NHSE to ensure sustainable funding for the thousands of children and their families who rely on this lifeline care every day.

Our new research released today shows that England’s children’s hospices will cut critical services such as end of life care, respite and symptom management should the grant be cut. With children’s hospices already facing a funding crisis with growing costs of care and energy it is vital that the children’s hospice grant continues.

Our research confirms that:

  • 38%

    children’s hospices would cut end of life care they provide. One would stop providing it altogether

  • 79%

    would cut the respite or short breaks they provide. One would stop providing them altogether

  • 66%

    would cut the hospice at home services they provide. One would stop providing them altogether. 

This does not take into consideration therapies that are core to children’s palliative care such as art therapy and hydrotherapy. These services, while vital to ensuring these children have the best possible quality of life, are not funded by the NHS and are covered by the hospices’ charitable income. However, many hospices have cut back on these already in the face of rising costs of providing care and staffing shortages.

A £300m funding gap

To add to this precarious situation. there is already a £300 million funding gap in children‘s palliative care services in England. The grant is a lifeline to the thousands of families across the country depend on. In 2022/23, when the total grant was worth £21 million, it represented, on average, £1 of every £6.50 (15%) of charitable spending by children’s hospices.

NHS England has now said that integrated care boards (ICBs) – formerly clinical commissioning groups (CCGs) – should be responsible for all children’s hospice NHS funding after April 2024. However, our report highlights that ICB funding is patchy and nowhere near the level that will sustain the crucial hospice services that children and families need.

We have also found that many ICBs have not prioritised work to commission children’s palliative care, even when funding has been available from the UK Government and NHS England.

Children’s hospices provide vital care to an ever-increasing number of seriously ill children and their families across the UK. If NHS England chooses to remove the 2024/25 grant, it will have a devastating impact on the lifeline hospice care they rely on.

Andy Fletcher, our Chief Executive

While we agree that ICBs should be responsible for allocating some NHS funding to children’s hospices, we are calling on the UK Government to commit to NHS England protecting and centrally distributing the grant as it does now beyond 2023/24. ICBs must also provide sustainable, long-term funding for local children’s hospices.

If they fail to do so, seriously children and their families could lose access to crucial care and support, denying them choice and heaping even more pressure on our already overstretched NHS services.

What the cuts could mean to families like Britt’s

The chance that families could lose access to the crucial care they need is a heartbreaking prospect for mum Britt, who has relied on Shooting Star Children’s Hospices for over 10 years. Her daughter Zoë has a genetic bone dysplasia disorder called OS-CS and a rare complex neurovascular disorder, which causes chronic headaches and mini-strokes.

Britt her family were at breaking point when they first came to Shooting Star Children’s Hospices.

“I’d been having regular panic attacks, and when I walked into the living room, I just collapsed, and they took one look at me and arranged it so we could all come into the hospice to stay for emergency respite. They literally rescued us. I’m in no way exaggerating when I say they literally saved my life.

“You never know if someone you love is going to need a children’s hospice. I wouldn’t wish it on anyone, but Shooting Star Children’s Hospices is still one of my favourite places to be. We need to keep hospices like mine funded, we need to keep them operating and we need to keep them safe. Because without Shooting Star Children’s Hospices, I don’t know how I would have coped. They saved my family.”

We need to keep hospices like mine funded, we need to keep them operating and we need to keep them safe.

Britt, Zoë's mum

You can read the full report

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