St Raphael’s is not part of the petition being handed to Downing Street but did call for “fairer funding”. It said its costs had risen in the last few years, and services had been cut as a result.
“We have a number of beds here in the hospice that we actually aren’t able to open,” said Rebecca Trower, the hospice’s chief executive.
“We’re not able to staff them because we actually can’t afford to do that. That’s one of our biggest frustrations.
“We know that there are patients in corridors in hospitals who need care and are waiting for beds, and yet we have those beds but not the staff to be able to support them,” she said.
“I think the government are now listening to us and that’s a big breakthrough, but if we’re going to continue, we do need fairer funding and that fairer funding means paying for our specialist services.”
For Terri and Will, their priority was ensuring that their father was comfortable.
“It’s really hard,” said Terri. “Because you’re also trying to accept that the person you love, more than anything in the world, is deteriorating in front of you.
“There’s just so much to deal with in such a short period of time, and all we want for him is to be comfortable.”
Will said he “couldn’t believe it” when he heard how much NHS funding St Raphael’s received.
Terri said the hospice allowed the family to spend time together, rather than taking on caring responsibilities.
“You know he’ll be alright,” she said. “There’s someone there.”
Toby Porter, CEO of Hospice UK, said the current funding model was a “recipe for inequality”.
“Local communities give generously to support their hospices but they do not all have the same ability to fundraise,” he said.
“We know that the Prime Minister wants to prioritise fixing end of life care. For that we need action and for hospices to be paid fairly for the services they provide.”
A Department of Health and Social Care spokesperson said hospices did “incredible work” and recognised that they were facing “incredibly tough pressures”.
They said Prime Minister Andy Burnham had made the government’s commitment to palliative and end-of-life care clear and was working to modernise and improve the sector, and tackle the variation across the country.
