A Hebden Bridge family whose daughter received care at Forget Me Not Children’s Hospice has joined the call on NHS England boss to make good his promise to properly fund children’s hospices.
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.
Read: These are the 23 Outstanding schools in Calderdale, according to Ofsted ratings
With proposals already having been made to close Acorns Children’s Hospice site in Walsall, Forget Me Not Children’s Hospice, which helps children and their families in Calderdale and beyond, is worried that this could be the tip of the iceberg.
Thea Walker from Hebden Bridge 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. 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, focused on enjoying the time we had together. Surely every family deserves the same?”
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.
Forget Me Not is joining Together for Short Lives calling on NHS England to keep its promise to protect the Children’s Hospice Grant – and go further by increasing it to £25million per year.
Read: The Piece Hall set to become an Open Air Cinema this summer
NHS England chief executive Simon Stevens had announced in 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”.
Luen Thompson is Chief Executive of Forget Me Not Children’s Hospice which provides services to more than 600 families across West Yorkshire and North Manchester.
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.
“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 that the services they rely on at the most difficult times in their lives will be there when they need them."
This Children’s Hospice Week, Forget Me Not is joining Together for Short Lives in calling on the public to sign Gabriella’s letter. This, alongside the full report of Together for Short Lives’ survey findings, is available at www.togetherforshortlives.org.uk/statutoryfunding
Read: We must keep TV licence fee free for our over-75s