Funding cuts will force children’s hospices to axe key family services

Campaigners last night renewed demands for an end to the scandal of funding for children’s hospices – as some warned they are preparing to pull the plug on crucial services.

In the starkest warning yet, the people looking after seriously ill babies and youngsters said end of life care, respite and symptom management assistance will all be slashed to the bone if the £25million Children’s Hospice Grant comes to an end.

Fears over funding have been growing since April when it was announced the current financial year would be the grant’s last – a scandal highlighted by the Daily Express

Last night it was understood NHS England had confirmed it will support the children’s hospice sector for another year at an “equivalent level” to 2023/24 – but no official announcement had been made. A spokesman said the NHS is “committed to a five-year funding programme” and added: “Discussion is ongoing with the Government and hospice sector to finalise arrangements beyond…2024/25.”

It was a glimmer of hope for the 9,000 UK youngsters living with life-limiting or threatening conditions. But charity Together For Short Lives, which is leading calls to save the grant, said it must rise in line with inflation.

Its chief executive, Andy Fletcher, who writes in the Daily Express today, said any reduction in the grant will have a “devastating impact on lifeline services”.

A new report reveals without the grant, two in five children’s hospices will cut end of life care. And four in
five will slash the respite or short breaks they provide. Other services, such as art therapy, are funded by charitable incomes.

But many hospices have already cut them in the face of rising costs.

Mr Fletcher said: “I call on the Government to commit to NHS England protecting and centrally distributing the grant.”

That call is backed by London-based US comedian and actor Rob Delaney, whose son Henry received care from Noah’s Ark Children’s Hospice before he died of a brain tumour in 2018 aged two-and-a-half.

The Catastrophe star said: “There will always be children who live short lives. But, by supporting our children’s hospices through sustainable funding, we can make sure dying children and their families get the same joy that we and Henry got.”

The care and attention Arjun Sanghera received from hospice staff ensured his family made the most of the little time they had with him.

Arjun suffered a massive brain haemorrhage which meant he could never be left alone and required around-the-clock care. As he aged, his needs increased. He stayed at home and died in 2020 at 17.

His family said the devotion of those working for Martin House, a charity offering hospice care for youngsters in much of Yorkshire, made the pain and suffering bearable.

Mum Manraj, inset, of Harrogate, said: “Throughout Arjun’s life, and at the end of his life, the support from the hospice meant that we could be a family until the very end.

“They were always there – at 3pm or 3am – when I was up in the night worried about medications or a seizure. Their support meant everything to us.

“It’s a place that we went for respite, for us to just be parents, not carers, nurses, doctors, but actually to be a family together – and that is what the hospice provided for us. When we look back, we can see that without Martin House we couldn’t have coped.

“There were occasions when I would ring them many times in a day, especially in the last two weeks of my son’s life when I required support at home.”

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