The father of a terminally ill boy has pleaded with the Government to provide further support to the financially struggling hospice his son relies on.

Forget Me Not Children’s Hospital, in Huddersfield, has launched an appeal after revealing a £1m funding gap could lead to 16 staff losing their jobs and a reduction in services.

Steve Lord, whose 10-year-old son Ethan suffers from a life-threatening brain disease, described the prospect of the hospice no longer being able to support him as “scary”.

The Department of Health and Social Care said it was “aware of the financial pressures facing the palliative care sector” and was “urgently working closely with NHS England to address these issues” .

The hospice currently had an annual running cost of £6 million, 90% of which came from fundraising.

The remainder generally came from recurring public funding.

It is NHS funding has been cut by around a third since 2021/22, while facing spiraling costs, the service said.

Ethan’s condition left him unable to speak, walk or feed himself, and hospice provided his family with a support network of professionals following his diagnosis two years ago.

He suffers from adrenoleukodystrophy (ALD), a rare disease that causes a progressive loss of physical and mental abilities.

“Ethan’s entire care package is built here,” Mr. Lord, 60, said.

“When he’s here he’s comfortable, it’s a nice environment. It’s not clinical and he’s treated like a normal person.

“They know what’s right and wrong for him and being here means he spends a lot less time in the hospital.”

He continued: “The idea of ​​all the good things that are left being ripped away because someone doesn’t see the benefit of not looking after places like this is heartbreaking.

“If this place isn’t here when the time comes, I don’t know what we’re going to do.”

The hospice said the planned layoffs represent about a tenth of its workforce.

Gareth Pierce, its chief executive, said: “Due to rising staff and energy costs, uncertainty over future statutory funding and a difficult year for fundraising and in our stores , we are facing a real gap in our finances of £1 million.

“We must act now to protect our future and ensure we can continue to be there for local families who need us. »

A Department of Health and Social Care spokesperson said: “Every family whose child requires end-of-life care deserves access to the best possible service.

“We are aware of the financial pressures facing the palliative care sector and are urgently working closely with NHS England to address these issues.

“We are committed to moving more healthcare into the community and ensuring that patients and their families receive high-quality, personalized care in the most appropriate setting, and palliative care will have an important role to play in this change.” .

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