Copyright newstatesman
Walking around the leafy grounds of St Raphael’s Hospice in Sutton, south London, on a sunny day feels incredibly tranquil. All on ground level, several buildings offer a range of services that move far beyond the realms of clinical care. An in-patients section with 13 private rooms feels like the much calmer cousin of a small hospital ward, without the trolleys in corridors and panicked bustling. Rooms for outpatient appointments service those in better health, and a lavender-scented reflection space hosts a chapel and a worship room for people of all faiths. A secluded, quiet building is dedicated to psychotherapy and bereavement counselling, while a livelier well-being centre offers games, yoga, music and complementary therapies such as reiki, massage and hypnotherapy. In a central garden, tended to by volunteers, custom copper leaves hang from a tree sculpture, engraved with the names of people who have died under the hospice’s care. I visit the room of one patient, a 79-year-old woman named Marie, who is receiving end-of-life care for cancer. Her husband Ken and son Tony are also there. Marie was in hospital for two weeks before being transferred to St Raphael’s. “It’s such a relief being here,” Marie says. “They’ve made me comfortable. They’ve given me purpose. And even though you might not ask for it, they give you humour. All those little things combine.” “The difference between this and the hospital is the dignity,” Tony adds. “We turned up in A&E, and we were literally on the side of a ward in a bed with people walking past you the whole time. Here, you’ve got your own room, you can have conversations with the nurses, the doctors are always available if you need them. It’s like chalk and cheese.” St Raphael’s offers both in-patient care and community care in people’s homes and care homes. All of its services are free, although it does encourage donations. “It’s a huge part of the community,” Becca Trower, joint CEO and clinical director at St Raphael’s, tells Spotlight. “If we’re not caring for somebody, then it’s their loved one or their friend. It’s not just the patient, it’s all of those people around them.” “ People are frightened to have conversations about death and dying, partly because they don’t know what it might look like,” she adds. “There’s a fear around the end of life. And I think one of our really important roles is to allay that fear.” Indeed, death is a topic that is often avoided, seen as depressing, awkward or undignified. But it doesn’t have to be this way. Dr Gabrielle Tamura-Rose is a consultant in palliative medicine who works at St Raphael’s and a local hospital. She has a friendly, relaxed demeanour as she informs me that she always wears pink scrubs on her Monday ward rounds, and forbids her team from wearing black. “I want to demystify that we are all ‘doom and gloom’,” she says. “When I was training in palliative care, people would treat me like the grim reaper. But it’s not just about death and dying, it’s not just symptom control – we do so much more to help people.” Despite the holistic work St Raphael’s does enabling people to have a good death, it has had to scale back its services. Like all hospices, it is only partially funded by the NHS – it receives roughly 25 per cent of its funding from the local integrated care board (ICB), and the rest is funded by charity, which includes donations, gifts in people’s wills, fundraising activities such as marathon runs, and profits from its charity shops. Last year, it had to make £1m worth of cuts. The hospice’s operating costs – such as salaries, IT costs, energy and food bills – have risen by £1.4m, but its NHS funding has not kept pace with inflation, and it has only received an additional £140,000. It has been forced to make redundancies and reduce its at-home care, psychological support and occupational therapy. The staff are “tired”, “burnt out” and “stretched”, Trower says. Some support, such as bereavement therapy for families, has been passed back to GPs, who are already under immense pressure: “It’s so short-sighted, because we save the NHS money.” St Raphael’s situation is not unique – hospices across England are being forced to cut services as others close entirely, placing the burden of care back onto GPs and hospitals. In most cases, community palliative care services are commissioned by the ICB, which receives government funding to deliver various healthcare services in their area. While ICBs do have a legal duty within the Health and Care Act 2022 to commission palliative care for their local populations, funding is not ringfenced, which has led to inequitable provision of services. Hospices are just one part of the palliative care landscape, which overall is a neglected and misunderstood part of England’s health ecosystem, medical experts tell Spotlight. It is delivered across a range of settings, including by specialists in hospices and hospitals, and generalists such as GPs and community nurses. There is a common misconception that it is solely for people who are close to death, but the specialism is actually focused on improving quality of life for anyone with a life-limiting illness – an incurable condition that shortens life span – from the point of diagnosis. It includes symptom management, but also psychological, social and spiritual support for patients and their loved ones. End-of-life care is specifically the care that people receive in the final year of their life. Palliative care doctors work with other specialists, such as cancer and respiratory doctors, to assess and treat patients holistically. “Palliative care works best and is most effective when it’s provided early and collaboratively,” says Katherine Sleeman, a professor of palliative care at King’s College London. She describes palliative care as a “high-value intervention” – providing benefits to patients, their loved ones and carers and the NHS. People who are terminally ill frequently end up in busy A&E departments and intensive care units (ICUs) for issues such as pain management. “When people receive high-quality palliative care, they stay longer in their own homes, they bounce in and out of hospital less in their last months of life, and they’re more likely to die in their own homes – all of which are things that people approaching the end of life generally want,” Sleeman says. “The main message to policymakers is: investment in palliative care is not just the morally right thing to do – it’s fiscally prudent.” Over the past year, death has received renewed attention due to the Terminally Ill Adults (End of Life) Bill, otherwise known as the Assisted Dying Bill – brought forward in November 2024 by Labour MP Kim Leadbeater. The legislation, which is expected to become law by 2029, would allow adults in England and Wales with fewer than six months to live to apply for an assisted death, subject to approval by two doctors and a panel of specialists. The bill has been a source of much debate, inciting strong feelings on both sides. But it has also brought conversations about palliative care to the forefront. Specialists such as Sleeman have expressed concerns that people may choose an assisted death simply because they cannot access the care and pain management they need – it is estimated that 100,000 people in the UK who could benefit from palliative care die without receiving it each year. Many specialists are adamant that investment into palliative care is an essential prerequisite to the incoming law. Dr Jamilla Hussain, a palliative care consultant and academic working in Bradford, is currently conducting research into inequalities at the end of life. Similar to other healthcare areas, those from disadvantaged groups, including poorer, disabled and ethnic minority people, are less likely to receive specialist palliative care. “We know that certain groups systematically get less palliative care, which ensures you have good symptom control, psychological support and spiritual support,” says Hussain. “We need to have better palliative care so people have a genuine choice.” One major barrier, particularly for ethnic minorities, is awareness of and preconceptions around the specialism. Public health messaging is urgently needed, she says, to tackle misinformation and make clear the difference between palliative care and assisted dying. “These communities don’t know about these services,” she says. “And if they do access them, the biggest fear they have is of not being cared for in the same way [as others].” Through its ten-year health plan for England, the government has recognised the vital role of moving some healthcare away from hospitals and into the community. Palliative care is a model example for this approach: research from the National Institute for Health and Care Research (NIHR) has found that 78 per cent of healthcare costs in the final year of life are spent on hospital care, at nearly £19,000 per person. Investing in community services could reduce expensive hospital admissions while freeing up beds for those who need life- saving treatment. But without investment, specialist services such as hospices will struggle to meet demand. According to Hospice UK, in England, on average, the NHS only funds around 40 per cent of the care that hospices provide, and two in five UK hospices are planning service cuts this year. “What we’re asking is: how is it acceptable to have a state-funded assisted dying service, yet end-of-life care is reliant on charity?” says Charlie King, director of external affairs at Hospice UK. “Our concern for a long time is that palliative and end-of-life care has been seen as a sort of ‘second-class citizen’ within the health and social care space,” he adds. “There are signs this is changing under this government, but we need them to commit to long-term funding reform.” Last December, the government announced a £100m funding boost for England’s 170 adult hospices, and £26m for its 40 children’s and young people’s hospices. The grant was for capital investment, so improving and modernising buildings, equipment and IT rather than daily running costs such as salaries. The hospice sector broadly welcomed this, but it is calling for multi-year financial contracts rather than one-off packages, and for specific funding for salaries so that hospices can match NHS pay, vital for recruiting and retaining staff. Hospice UK has laid out both of these asks in a plan it published earlier this month, alongside calling for specialist palliative care to be fully funded by the NHS (complementary support would remain charity-funded), and for the government to commit to equitable provision of palliative care services across England. Others are calling for investment into out-of-hours support – a national 24/7 palliative care helpline would ease pressure on emergency services, says Sam Royston, executive director of policy and research at end-of-life charity Marie Curie. “When somebody has agonising pain in the middle of the night, their response is often to call 999,” he continues. “If paramedics aren’t carrying the end-of-life medications needed to support that person, they then get conveyed back to hospital – this should be entirely avoidable.” On visiting St Raphael’s, it was apparent that palliative care is about so much more than medical intervention or pain relief. That broader range of services – from physiotherapy to family support and alternative therapies like massage – are what make people’s final months, weeks or days feel worth living. And experts agree that they are essential components in ensuring someone has a dignified, good death. “I think that we’ve medicalised death and dying in the UK,” says Hussain. “Unlike diabetes or even cancer, they are social events rather than medical events. It’s about people and families and communities. I think part of us addressing inequalities in access to palliative care is: how do we [doctors] stop getting in the way of that? How do we support that to flourish?” Demand for palliative care is only set to increase – the UK’s ageing population and projected rise in major diseases mean that 160,000 more people in England and Wales will need palliative care by 2040, according to research published in BMC Medicine. With the Assisted Dying Act on the horizon, it is imperative that people have the freedom to choose how they wish to die on their own terms. The government has placed emphasis on shifting the NHS from sickness to prevention – but to truly ease pressure on an overburdened healthcare system, it clearly needs to invest not only in helping people live well but helping them die well too. This article first appeared in Spotlight on Heathcare: Designing a healthier future
