Hospices seek funding certainty to meet demand

Namla says her daughter's overnight stays at a hospice give her some respite

Children's hospices have called for a more sustainable funding model to meet growing demand, as young people are living longer with life-limiting conditions.

Forget Me Not Hospice in Huddersfield had 385 referrals, an all-time high, last year and since April has had more than 375.

Chief executive Gareth Pierce said it could do more if funding was "in a better place".

In October, the government committed £80m for children's and young people's hospices over three years and said it recognised the "incredibly tough pressures they were facing".

Mr Pierce said the hospice provided "as much of what it can" to families that need its support.

"There are people across West Yorkshire that need our help - but we're just simply not able to provide what we need to, to everyone that needs our help", he said.

He said the government support was welcome but it only gave the service "certainty for the next few years".

"We still need to see that wider sustainable funding model moving forwards - so we can plan our services for the future," he added.

Forget Me Not received £1m in statutory funding for 2025/26 but government funding represents only about 20% of the money it needs.

Around 99,000 children across the UK are living with life-limiting conditions - such as cancer, cystic fibrosis, brain or spinal injuries - a number that has tripled in the last 20 years.

Sara loves the sensory room at Forget Me Not Children's Hospice, her mum says

Single mum Namla has described the support she has received from Forget Me Not as "life-saving".

Her three-year-old daughter Sara has drug-resistant epilepsy which has evolved into Lennox-Gastaut syndrome - a severe form of the condition.

She can have 15 to 20 seizures in an hour.

Namla attends counselling sessions at the hospice for which she said she was "so thankful".

She has been offered overnight stays for her daughter to give her some respite, but will only be able to have five nights a year.

"Five nights from a full year is not much at all - I feel like if the hospice could do more, they would offer more of a monthly basis," Namla said.

"So many families benefit from having hospices like Forget Me Not, they offer so much.

"It's just been really sad to see them go through all of the cuts and having to let go some of the staff, which have been brilliant."

Namla says Sara was stillborn and it took the hospital team about 40 minutes to get her heart beating

The hospice said overnight stay offers depended on individual circumstances but it said it had to make "sizeable reductions in the amount of short breaks" it could offer.

Namla said if she started thinking about the future she would get "really depressed" about what might happen to Sara.

She said for Sara's first year and a half she was really "down in the dumps," but now tried to remain positive because she "can't change what's happened".

"All I can do is live the life as happy as I can be - and make the memories that we can make," she said.

Forget Me Not is not the only hospice in Yorkshire seeing a rise in demand.

Martin House Children's Hospice in Boston Spa said in the past 12 months it had seen a 25% increase - 175 in 2024/25 compared with 140 the year before.

There is a £310m funding gap for children's palliative care in England, according to the charity Together For Short Lives.

The charity has warned that nearly two thirds of children's hospices ended the year with a deficit and "unless urgent action is taken" 2025/26 would see this figure spiral further with more than 90% forecasting a net deficit.

A government spokesperson said hospices did "incredible work" to support people and families when they needed it most, and it recognised the "incredibly tough pressures they were facing".

"We recognise there is more to do, and we are exploring how we can improve the access, quality and sustainability of all-age palliative care and end-of-life care in line with the 10-Year Health Plan," they added.

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