Hospice and Palliative Care

Luke Taylor Excerpts

Monday 13th January 2025 Commons Chamber

[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 ---

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

I begin by thanking my hon. Friend the Member for Wimbledon (Mr Kohler) for bringing forward this incredibly important debate. Anyone who has been paying attention to my contributions in this place will not be surprised that I am once again expressing my deepest possible concerns about St Raphael’s hospice in my constituency. Its case is emblematic of the problems across this undervalued and dramatically important sector.

One of my first visits after being elected as the MP in July was to St Raph’s hospice, where I saw the incredible care that it offers to residents in my constituency and beyond. I have met people from the hospice several times since then, including just this morning, and it is clear that while the Secretary of State’s £100 million announcement is welcome, it simply does not go far enough. The funding is restricted to capital expenditure fractions, such as refurbishments and digital services. While undoubtedly important to modernise and update the capability of our hospices, the funding does not address their immediate financial hardship, especially in the context of the Chancellor’s Budget.

St Raph’s is set to face an estimated £140,000 increase in staff costs this coming year due to the rise in employer national insurance contributions. This burden only adds to the significant strain on the hospice, which is currently funded by the NHS for just 28% of its budget. It is therefore reliant on the generosity of charitable donations for the remainder. If the Government fail to see sense and exempt hospices from this hike, structural deficits will only continue to grow in the sector, pushing many over the cliff edge altogether and forcing those who remain open to cut their services to the bone.

While the announcement of additional funding is appreciated, it does not address the root of the problem. The Government’s approach is dangerously akin to tackling a leaking roof with a mop and bucket. The Secretary of State spoke last week about the need to shift the focus of healthcare from the hospital to the community, yet I fear their treatment of the hospice sector has done exactly the opposite. Due to the limited funding that St Raph’s receives, it has been forced to cut its hospice at home scheme, a vital service where staff directly attend to patients in their own homes in the local community. Those on the Government Front Bench say they want community-based palliative care like that under the hospice at home scheme, but the scheme has been cut further due to their actions.

These issues show why they must bring forward a long-term funding arrangement for hospices, if the Government intend to keep their promise. My Hospices and Health Care (Report on Funding) Bill, presented last year and due for Second Reading in July, sets out ways for the Government to consider those options to deliver a long-term funding deal. However, I sincerely hope that by July the Government will have listened and the Bill will not need to be debated at all. I urge them to please make my Bill completely redundant.