At the end of 2023, St Catherine’s hospice near Crawley, West Sussex, moved to a new purpose-built, state-of-the art building. Twenty-four private rooms with en suite bathrooms and French doors leading to individual terraces were designed to make the final days of a patient’s life as peaceful as possible. Medical equipment was concealed, beloved pets were welcome to visit, and a drinks trolley came round each evening.
The hospice had cost almost £20m to build and equip, every penny raised by donations, legacies, charity events, trusts and foundations. The land was a gift from a local businessman.
Fifteen months later, half the rooms are mothballed and 40 jobs have been lost. Patients have to meet a higher threshold for admission, and a 24/7 helpline for those caring for dying people at home has been reduced to eight hours a day, Monday to Friday.
The cuts are the result of a funding crisis shared by most in the palliative care sector. “Hospices are in retreat,” said Giles Tomsett, the CEO of St Catherine’s for the past 11 years. This is happening, he pointed out, just as the baby boomer generation is about to need end-of-life care on a significant scale.
According to Hospice UK, a body that represents more than 200 hospices, many have had to make “tough decisions” about the services they provide. Last year, one in five hospices warned of service cuts, and 300 beds have been taken out of commission.
In recent months, St Michael’s in Basingstoke has said its future is uncertain because of “unprecedented financial pressures”. The 26-bed Marie Curie hospice in Liverpool closed temporarily last summer, but may never reopen. Three hospices in North Yorkshire have warned that job losses and cuts to services may be needed. St Giles in Lichfield closed eight beds and cut 21 jobs. Dorothy House in Somerset has said that without support for staffing costs, it will be forced to cut services.
Although hospices are a crucial provider of care for dying people, government funding averages at 30% of their total costs, according to Hospice UK. The sector is forced to rely on fundraising, charity shops, donations, legacies and grants for the rest. And the proportion of state money received by individual hospices varies significantly, resulting in a postcode lottery of provision.
In December, the government announced a £100m investment to fund improvements in hospice buildings and equipment rather than running costs.
Hospice UK welcomed the move. “It will ease some of those pressures and allow hospices to invest in their infrastructure,” said Toby Porter, the organisation’s CEO. But, he added, “the fact remains that hospices are still in very challenging financial positions”.
In recent months, the funding of end-of-life and palliative care has been highlighted in the debate on whether assisted dying should be legalised. A palliative care commission, set up by MPs to identify strengths and shortfalls in provision, is expected to report soon.
Sean O’Sullivan had direct experience of the hospice sector when his wife, Christine, was admitted to Katharine House in Banbury, Oxfordshire, last autumn in the final stages of cancer.
The day before she died, she was moved to a private room. O’Sullivan stayed with her, lying alongside her as she took her final breath. “It gave me great comfort. She died very peacefully,” he said.
The care provided by the hospice was superb, said O’Sullivan. “It was very personal, never rushed, attentive to the individual. I am for ever grateful.” A hospital ward would have been “noisy and distracting, with staff rushed off their feet”, he added.
But it was “pure luck” that a bed was available for Christine. “There is so much pressure on places. I feel that the experience we had should be an option for everyone,” O’Sullivan said.
In contrast, Paul Harwood has been unable to find any hospice care for his father in Pembrokeshire. “We are paying huge amounts for a home care because there are no other options and no one can give us any help. As far as I can tell, there is no hospice-type care in west Wales for hundreds of miles. The system is broken and only getting more broken,” he said.
Emily, a clinical nurse specialist who assesses and refers patients for transfer from a big city hospital to local hospices, said: “Every hospice in my area has cut beds, and some have lost senior clinical roles. It’s a huge postcode lottery. While I’ve been doing this job over the past three years, your chances of getting a hospice place have got lower.
“A lot of my job is about expectation management. I have to caveat everything I say. Families become really distressed when they are told there’s no bed available. These conversations are really difficult.”
At St Catherine’s, the cutbacks have been heartbreaking, said Tomsett. “We have 12 beds empty while dying people are being nursed in hospital corridors. We see fewer patients in the hospice or in the community, which means the NHS has to pick up the slack.”
Shelley Goshawk, the hospice’s ward matron, said: “We always have a waiting list. Patients end up dying before they can get a bed. It’s very difficult knowing that for every patient we look after, there are others that we can’t care for.
“I really feel for the families. The ones that do get a bed can take a deep breath, it’s such a relief. People say they can go back to being a husband or daughter again rather than a carer.”
St Catherine’s costs about £12m a year to run, with just under £3m coming from the state. “Last year, for the first time, we could see a deficit was likely to emerge this April,” said Tomsett. “Our running costs have increased significantly over the past five years, and the cost of living crisis has impinged on people’s propensity to donate.”
The increases in employers’ national insurance contributions and the living wage that come into effect next month will have a further impact on the hospice’s budget, although Tomsett hopes that improved pay will help recruit people to do essential jobs such as cleaning, housekeeping and catering. “I think the increase is right,” he said.
But the reliance on donations to fund hospices is unsustainable, he added. “The NHS is looking to hospices, which are charities, to provide essential end-of-life care. Yet by underfunding palliative care, we are forced to cut back on services and get involved at a later stage.” In the end, it costs the NHS more, he said.
“Few hospices will actually close, but many will provide fewer and smaller services. And this is at a time our ageing population needs us more than ever. Baby boomers are about to swamp the whole of the NHS, hospice and palliative care system.”
Hospice UK hopes the government’s 10-year plan for the NHS in England, due to be published this spring, will provide a joined-up approach to end-of-life care alongside more consistent funding.
“The plan must overhaul our approach to palliative and end-of-life care and ensure hospices like St Catherine’s have the sustainable funding they need to support their local communities long into the future,” said Porter.
