Hospice and Palliative Care

Paul Kohler Excerpts

Monday 13th January 2025 Commons Chamber

[Mr Paul Kohler (Wimbledon) (LD)]

I beg to move,

That this House has considered hospice and palliative care.

First, I thank the Backbench Business Committee for granting time to support this important debate, and I thank colleagues from across the House for supporting my application and joining me today to discuss a subject that, to use an old cliché—but in no more apposite a context—is truly a matter of life and death.

When this House debated the Terminally Ill Adults (End of Life) Bill last November, the crisis in hospice funding and concerns over the provision of palliative care were a constant refrain in the subtext of many of the speeches from supporters and opponents of the Bill. As someone who entered the Chamber that morning undecided as to how I would vote, I became increasingly convinced throughout the five hours of powerful argument and testimony that no matter what the House decided, the time had come to address hospice funding for the provision of palliative care head on, for death is as much a part of life as living.

While as parliamentarians we readily focus on what makes a good life, we rarely consider what makes a good death. It is possible to have a good death, as I saw with my mother, who passed away in comfort at the beautiful Arthur Rank hospice in Cambridge, and with my father, who died in the exceptional palliative care facility at Bellevue hospital in New York. As a family, we remember those times as sad, but cathartic, with moments of laughter as well as tears, as when my father—somewhat confused towards the end of life, but with a glint still in his eye—asked, as I sat next to him stroking his forehead, whether I was a lady friend.

Sadly, however, too many in our society do not experience a good death, and we need to start asking why. The hon. Member for Spen Valley (Kim Leadbeater) bravely took on that challenge with her private Member’s Bill, and I hope that this debate will afford us an opportunity to build on those foundations.

[Kim Leadbeater (Spen Valley) (Lab)]

Does the hon. Member agree that the renewed focus on the hospice and palliative care sector is extremely welcome and overdue? Does he agree that the extra £100 million of investment shows how seriously this Government are taking the issue, showing that people approaching the end of life are fully supported in whatever choices they make?

[Mr Kohler]

I agree with the hon. Lady, and I will be coming to those points.

Today is not about rehashing the arguments made that Friday, but to allow Members time to discuss and reflect on this separate, but inextricably linked subject. It is not the last word on hospice and palliative care, but an important step in forging a consensus that I hope will unite us, no matter where we ultimately stand on assisted dying.

I began by referencing the crisis in hospice funding. Before I proceed further, I echo what the hon. Member for Spen Valley said and thank the Health Secretary for the £100 million in capital and digital moneys he announced last month. It will make a profound difference to the sector’s current financial position. I have been asked by individual hospices and Hospice UK to convey their genuine gratitude. In a similar vein, the Government’s recently announced commitment to extend the children’s hospice grant by a further year is deeply appreciated and equally vital to maintaining levels of service in this heartrending, but profoundly important part of the hospice movement. However, these are only short-term fixes and fail to provide the long-term funding and certainty critical to securing the future of the hospice movement.

Currently, only one third of hospice funding is provided by the Government, with the rest coming from charitable sources. That leaves hospices vulnerable to increased cost pressures, as can be seen in a recent Hospice UK survey, which found that at least 20% of hospices had cut services in the past year or were planning to do so. Becca Trower, the clinical director of the wonderful St Raphael’s hospice, which provides excellent care to residents in my Wimbledon constituency, was unambiguous when she told me:

“We have a funding crisis and we need to protect our hospice.”

Last year, that meant that St Raphael’s was forced to strip £1 million from its £6.5 million budget by ending its hospice at home service that provided vital care, advice and support to patients and carers in their own homes. It was a virtual ward, in fact, but not one that fitted within the NHS definition of such, which would have attracted the separate integrated care board funding available for such initiatives. In just one month, the cuts to the service directly impacted 26 patients, many of whom spent their last days taking up valuable hospital beds, dying in the one place they did not want to die and putting further pressure on the NHS. When the Government are aiming to move medicine into the community, it makes no sense for hospices to be forced into a position that achieves the opposite.

That contradiction is mirrored in the current funding settlement, where the Government have given with one hand and taken with the other by increasing employers’ national insurance contributions. The refusal to exempt charities will exacerbate the challenges confronting hospices. The amazing Shooting Star children’s hospice, for example, provides wonderful support for families in my constituency. It estimates that the change will add another £200,000 to next year’s cost base.

Hospices need certainty. Doubts over funding undermine morale and sap energy, making the recruitment and retention of staff another huge issue for the sector. To address these problems, the Government need to introduce a consistent, reliable funding mechanism that reflects the rising costs of care. Hospices consequently need to be included within the NHS’s much-anticipated 10-year health plan. In parallel, staffing needs must be addressed in the next NHS long-term workforce plan.

It should not be forgotten that hospices provide a variety of services in addition to palliative care, including emotional, psychological and spiritual support, as well as physio and occupational therapy, practical support, complementary therapies, respite care and bereavement services. Much of that is beyond the clinical, and not something that the NHS can be expected, nor can afford, to provide. That is why no one I spoke to in the hospice movement thought that hospices should be subsumed within the NHS. They provide a complementary service that extends well beyond the clinical, and to which a charitable funding model is more effective and appropriate.

[Jim Shannon (Strangford) (DUP)]

I commend the hon. Gentleman on setting the scene so well. One of the concerns that I and others in the Chamber have is the impact on the workers in hospices. It is not just about the financial implications, which are all part of the overall issue, but burnout. Staff are working long hours. They are volunteers in many cases, and they do that because it is what they are committed to. Does he share my concern that burnout in hospice care will have an impact on the NHS in the long term?

[Mr Kohler]

I agree with the hon. Member. We need more palliative care specialists and we need more training, and there is a real danger of burnout.

It is not just hospices that provide palliative care. When talking to specialists within and beyond the hospice sector, I have been struck by their commitment to giving patients a good death and their frustration that so many do not receive one. A palliative care doctor recently told The Guardian:

“I sometimes see patients…who come into hospital in unspeakable agony and want their lives to end. It is not because their pain cannot be prevented, but because they are not getting the care they need.”

A local oncologist told me:

“Demand for services is simply outstripping supply. The majority of patients are not getting their end of life care wishes met. The specialist palliative care teams are very good but there are not enough of them and they do not have adequate resources.”

Huge regional inequalities exist in the provision and quality of services due to the vagaries of the current funding model. The Health and Care Act 2022 included for the first time a statutory duty for ICBs to provide palliative care. However, it did not include a minimum standard of core provision, leaving it to what each ICB considers appropriate.

Freedom of information requests submitted by Hospice UK in 2023 found that adult hospice funding consequently ranged from just 23p to £10.33 per head of population across different ICBs. For children’s hospices, the variations were even starker. Research from the amazing charity Together for Short Lives found that spending per child with a life-limiting condition varied from an average of £531 in Norfolk and Waveney to just £28 in South Yorkshire.

[Luke Taylor (Sutton and Cheam) (LD)]

On the point about the postcode lottery—an oft-used cliché by politicians—I have heard from Hospice UK that, on one occasion, a single gift from a legacy covered the running costs for a hospice in the UK for five years. Does my hon. Friend agree that that is one of the starkest and most extreme illustrations of how the current system is so unbalanced and, from one street to the next, leaves people with such disparities of access to such an important element of healthcare?

[Mr Kohler]

I agree, and I will come to some solutions that might address this issue. We must increase the core responsibilities of ICBs in this area.

Inevitably, much palliative care is provided not by specialists but by generalists, such as GPs, trainee doctors and community nurses for whom care of the dying is not their primary focus. Many lack the training, time and resources needed to provide what is possible, not through their fault but due to a system that does not regard palliative care as a core function. That is all too evident at the outset of their careers, with one medical student telling me:

“I only received 2 mandatory days training on palliative care in my entire degree. This is simply not enough and we need to increase training across the board to ensure patients are given equal access to high-quality care.”

Since the Shipman case there is unacceptable legal uncertainty, particularly among non-palliative care specialists, about the extent to which analgesics can be given in a sufficient quantity to alleviate pain, even where that might hasten death. The system requires a complete overhaul. We need more palliative care specialists and better training for non-specialists, including robust advice on the legality of giving sufficient pain relief to alleviate suffering, buttressed if necessary and appropriate by more explicit guidance in the Director of Public Prosecutions’ code for Crown prosecutors and the Lord Chief Justice’s criminal practice directions.

ICBs should be required to provide a minimum level of palliative care as a core function. This would have a transformative effect on how palliative care is funded both within and beyond the hospice sector, rather than leaving it to the generosity of particular ICBs such as South West London and Surrey Heartlands, both of which do all they can to fund local hospices, but within the constraints of a funding model that limits their ability to do so.

In concluding, I want to return to where I began. The debate is a matter of life and death. Ensuring a good death is important not just for the individual at the end of their life, but for those they leave behind. Knowing that someone passed away peacefully can bring real comfort to those mourning their loss. I would like to end with the words of Fleur, whose son received end of life care at the wonderful Shooting Star hospice. She said:

“Hospices are not just places where life comes to a close…they are places where those left behind learn how to keep on living. When my son Toby died, our hospice didn’t just care for him—it cared for all of us, to give us a future not defined by trauma, but by love, resilience, and hope. Months later, when my daughter had to step back into a hospital—the place where we had first been told we would lose Toby—she froze, overwhelmed by fear and grief. When she returned to the hospice, the very place where Toby had taken his last breath, she ran inside, kicked off her shoes, and threw herself into the arms of a nurse.”

That is what it is possible to achieve. I hope the Government are listening.

--- Later in debate ---

[Mr Kohler]

I thank everyone for contributing today. This is a vital issue, and the sheer number of Members who spoke at such short notice shows how important it is to the House. We have heard many excellent contributions, but I will not try your patience, Madam Deputy Speaker, by listing those who spoke. The one motif running through the speeches was the need for a long-term funding plan. I heard what the Minister said about the £3 million NIHR investment and establishing a long-term strategy. I fear that it sounds like a plan for a plan, but I look forward to the 10-year health plan, because we absolutely need a strategy for the next 10 years, not the next two years, and I will hold him to his word.

Question put and agreed to.

Resolved,

That this House has considered hospice and palliative care.