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Children’s hospice services under threat as NHS funding falls

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Children’s hospices are a lifeline for seriously ill children up and down the UK which is why the Government must commit to the funding they need. We have launched the Short Lives Can’t Wait campaign to drive this and we need your help.

We are leading a move to change the reliance on public donations by calling on the UK Government for more support. But we can’t do it without you. You can help secure the vital grant for Children’s Hospices by signing our open letter today.

By doing so you and many other caring people will show the Government that you want sustainable funding so that children hospice’s will be there today, tomorrow, and long into the future.

Why your signature matters

Our new report shows that lifeline children’s hospice services are under threat:

  • Local NHS funding for children’s hospices in England has dropped by 31% since 2021/22, while their running costs have risen by 15%.
    Our new report finds that lifeline services, including respite and end of life care, will be cut if the next UK Government fails to maintain a crucial £25m ringfenced NHS fund for children’s hospices in England.
  • We are urging parties contesting the general election to protect funding for seriously ill children and their families.
    Action also needed in Northern Ireland, Scotland and Wales as government funding has not kept up with the soaring costs of caring for seriously ill children.
  • Our new report reveals lifeline services including respite and end of life care will be cut if the next UK Government fails to continue a crucial £25 million NHS fund for children’s hospices:
Infographic showing the text: If the next Government fails to back the £25m NHSE funding for children's hospices... 82% would cut or stop providing respite care or short breaks. 70% would cut or stop providing emotional support. 45% would cut end-of-life support they provide.

The findings, from our new report, Short Lives Can’t Wait: Children’s Hospice Funding in 2024, show how statutory funding has declined while children’s hospices contend with growing running costs. Inflation, higher energy prices and the rising cost of recruiting and retaining skilled staff means that, on average, children’s hospices in England spent 15% more in 2023/24 compared to 2021/22.

Yet during this time local NHS bodies and councils have cut funding for children’s hospices in England. On average, local NHS bodies spent a third (31%) less on children’s hospices in 2023/24 than they did in 2021/22. This is despite them having a legal duty to commission children’s palliative care and a growing number of babies, children and young people living longer.

Freedom of information requests (FOIs) conducted by us also showed a continuing postcode lottery in local NHS spending on children’s hospices, with ICB funding varying by as much as £366 per child in 2023/24. While Bristol, North Somerset and South Gloucestershire ICB spent an average of £397 per child, Northamptonshire ICB spent just £31 per child.

A shortfall in funding

Central funding for children’s hospices in England has been in place since 2006/7. Yet neither the UK Government nor NHS England have committed to maintaining the money beyond March 2025.

The uncertain future of the vital funding comes as over half (51%) of children’s hospices in England report a deficit – a number set to grow to nearly three quarters (69%) in 2024/25, should funding continue to fall. We estimate the funding shortfall will reach just over £25 million in 2024/25.

We have written to the leaders of the parties contesting the general election, urging them to commit to a £25 million centrally funded, ringfenced children’s hospice grant for the long-term, should they form the next UK Government.

Our report has also highlighted funding worries for children’s hospices in Northern Ireland, Scotland and Wales:

  • Earlier this year, Northern Ireland Children’s Hospice was forced to reduce its number of beds as a result of cuts in funding from the Northern Ireland Executive.
  • The £7 million of annual funding previously awarded by the Scottish Government now only amounts to 30% of Children’s Hospices Across Scotland’s total expenditure – a shortfall of £3 million per year.
  • In Wales, the previous £880,000 awarded to the children’s hospices in 2022 no longer represents 21% of their care costs and cannot sustain the level of services families need.

Andy Fletcher, Chief Executive of Together for Short Lives, said: “On the eve of the general election, our children’s hospices are at a turning point. Our report paints a bleak picture of rising costs, local funding cuts and the prospect of lifeline services for seriously ill children being hugely reduced unless the next government intervenes urgently.

“For 18 years, families have relied on the central NHS funding for children’s hospices. The parties must commit to continuing it for the long-term as a £25 million ringfenced grant which increases with the rate of inflation.

“And more widely, amid a £295 NHS children’s palliative care funding gap, the next Prime Minster must end the sticking plaster approach to funding these crucial services. We need a review which leads to a more permanent, sustainable funding solution.

Many seriously ill children will not be alive the next time the UK goes to the polls. We have one chance to get it right for them. They do not have time to wait.

Andy Fletcher, our Chief Executive

What the cuts could mean to families like Corey and Parker’s

A family of five pose for a photo. In the back row are mum, daughter and dad. In between two sons in wheelchairs in the front row is another daughter holding a teddy.

One family who understands how vital hospices are to the UK’s 99,000 seriously ill children is the Watkins family from Widnes, Cheshire. Full-time carers and parents Karina and Jason have two disabled sons, Corey and Parker, and two daughters Georgi and Lottie who are all pictured above.

Weighing just 1lb 14oz, Corey was reliant on oxygen at birth. At 18 months old, he was diagnosed with cerebral palsy. It was only after Karina and Jason’s third child, Parker, was born with complex medical needs they realised they could no longer cope on their own. Now aged 14, Corey’s health has deteriorated, and he is currently receiving palliative care.

The couple have been supported by Claire House Children’s Hospice since 2016. The family have accessed a range of services, including respite breaks, emotional and psychological support and symptom management – services which are at risk across the country should the next UK Government fail to commit to long-term funding for children’s hospices.

Mum Karina says: “Corey was born prematurely at 25 weeks, and he’s had a lot of problems. He needs pain relief all the time, constant movement and one-to-one assistance. Parker’s condition meant that, like his older brother, he needed round-the-clock care. You become a nurse overnight. You go from being mum to a carer and there is no time to be just a mum again.

“You’re grieving for your child while he’s still here. We just don’t know how long we’ve got with Corey. We just have to make the most of the time we’ve got.”

“They don’t just help the boys, they help our two other children and us as a family. The sibling events are brilliant. They also put things on for us, so I play golf with the dads and meet other parents that have disabled children. We would be totally lost without Claire House. Back to being tired, not being parents, just being carers. That’s not a life for us and not a life for the children.”

- Jason, Corey and Parker's dad

Act now: Help secure the grant for Children’s Hospices

We will be presenting our open letter to the new Government and we need show them how much this matters to you, the families affected, and everyone who cares deeply that’s seriously ill children get the access to the services they need. So please sign this crucial letter and show your support today.

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