NHS and local council cuts are hitting lifeline care for seriously ill children, a survey of 27 children’s hospices in England carried out by charity Together for Short Lives has shown. The news comes as NHS England chief executive Simon Stevens’ commitment to protect and increase children’s hospice funding is not being met. With proposals already having been made to close Acorns Children’s Hospice site in Walsall, Together for Short Lives is worried that this could be the tip of the iceberg. It is calling on NHS England to keep its promise to protect the Children’s Hospice Grant – and go further by increasing it to £25 million per year.
Gabriella Walker, mother of Thea Walker who died in February this year as a result of Niemann-Pick disease type A, has written to the Secretary of State for Health and Social Care, Matt Hancock, calling on him to make sure NHS England honours its commitment to protect and increase children’s hospice funding. We’re now inviting parliamentarians, hospices and members of the public to add their name to Gabriella’s letter and join her call for fair and sustainable funding.
- In the two years between 2016/17 and 2018/19, the funding each children’s hospice charity received from local NHS clinical commissioning groups (CCGs) reduced on average by more than £7,000 – a 2% cut from £371,303 to £364,076.
- In the last year, between 2017/18 and 2018/19, nearly three quarters (74%) of children’s hospice charities experienced a real-terms cut (a cut, freeze or increase below 1.8%) in the money they received from CCGs. Over half (56%) of children’s hospice charities experienced cuts or freezes in CCG funding in cash terms.
- Funding is also very patchy and varies widely across local areas: 15% of children’s hospice charities receive nothing at all from their CCGs.
- The money that each children’s hospice has to spend each year to meet the needs of seriously ill children and their families has grown to an average of £3,681,442 – a 4.5% increase between 2016/17 and 2018/19, faster than the rate of inflation.
- This combination of falling CCG funding and increasing costs is hitting our most vulnerable children and their families: a fifth (19%) of children’s hospice charities are cutting vital short breaks for respite.
Acorns Children’s Hospice has cited uncertainty over the future of the Children’s Hospice Grant as a material factor in its recent decision to propose closing its Walsall hospice.
Simon Stevens had announced on 27 December that, over the next five years, up to £7million additional funding would be made available to children’s hospices each year on top of the existing £11million Children’s Hospice Grant, if CCGs also provide additional match funding. However, NHS England subsequently rowed back on this promise in its Long Term Plan. This stated that the additional funding will also be available to other, non-hospice palliative care services.
This was later confirmed in Parliament by Care Minister Caroline Dinenage. While NHS England has increased the grant to £12million for 2019/20, she refused to commit to continuing it exclusively to children’s hospices beyond this year. The minister said the Department of Health and Social Care would only “expect hospices to be significant beneficiaries of the additional funding” set out in the Long Term Plan – and that “simply increasing the hospice grant is not a solution”.
Andy Fletcher, Chief Executive of Together for Short Lives said:
“All children’s palliative care services, delivered in hospitals, children’s hospices and the community, need equitable and sustainable funding. However, children’s hospices in England are facing a dangerous cocktail of growing costs and declining, patchy NHS funding, which is putting their long-term future at risk. Acorns’ proposal to close one of its children’s hospices could be just the tip of the iceberg. It is simply not sustainable to expect specialist children’s palliative care services provided by children’s hospices to be funded by charity reserves and the generosity of the public. It is time for Simon Stevens to make good on the commitment he made at Christmas by protecting the grant and increase NHS funding for children’s hospices.”
Thea Walker from Hebden Bridge in West Yorkshire died in February this year aged two years and nine months as a result of Niemann-Pick disease type A, a rare life-limiting condition. She received palliative care at Forget Me Not Children’s Hospice, which provides services to more than 600 families across West Yorkshire and North Manchester. Thea’s condition meant she had to be fed through a tube, relied on a wheelchair and wouldn’t learn to talk.
Her mother Gabriella Walker said:
“With the support of Forget Me Not we felt less alone, more empowered. Their help gave us the confidence and skills to pack as much fun and life into the few short years Thea had as we could, as well as maintain a ‘normal’ life, with work and school, birthday parties and holidays. I dread to think how different things could have been if Forget Me Not had not been there. And of course as Thea’s disease progressed we relied more on the medical support they provided, which was invaluable.”
“I was shocked when I learnt how little Forget Me Not and other hospices like them receive from the NHS and local councils. They made sure that my family spent those years living as best we possibly could, focussed on enjoying the time we had together. Surely every family deserves the same?”
Luen Thompson is Chief Executive of Forget Me Not Children’s Hospice. She said:
“The lack of NHS and local council funding has a huge impact on the care and support we are able to provide to the families who need it. We have two hospices: we cannot fully open our Bury hospice yet despite having amazing facilities and families desperate to access them because it receives no funding from the NHS. Our Huddersfield hospice receives less than 3% in statutory funding of the £4million it needs to run.
“Our offer to families shouldn’t depend on how much we raise at a bucket collection or how much bric-a-brac we sell in one of our shops. Increased NHS and local council funding would reassure families like Gabriella’s that the services they rely on at the most difficult times in their lives will be there when they need them. That there will be somewhere their child can stay overnight so mum and dad have time to rest and recuperate. That there will be support for brothers and sisters worried about their sibling. That when the time comes, their child will receive the end of life care they need – and the family will have the help they need to make precious memories and say their last goodbyes.”
Gabriella Walker has written an open letter to Health and Social Care Secretary Matt Hancock, calling on him to make sure Simon Stevens honours his commitment to protect and increase children’s hospice funding. This Children’s Hospice Week, Together for Short Lives is calling on the public to sign Gabriella’s letter.