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.
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?
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.
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?
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.
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?
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.
It is an absolute honour to follow the hon. Member for Wimbledon (Mr Kohler), who made a wonderfully poignant speech. I thank him for securing this debate.
As the Member of Parliament for Huddersfield, I have had the privilege of witnessing at first hand the exceptional work of hospices such as Forget Me Not children’s hospice and Kirkwood. These organisations are lifelines for individuals and families facing life-limiting conditions. I welcome the recent announcement of the expansion of hospice funding, which is a crucial step in addressing the financial challenges that these vital organisations face.
Hospices such as Forget Me Not and Kirkwood do not just offer medical care but provide emotional, psychological and practical support to patients and their families. They ensure dignity and compassion at every step of their journey, addressing the full spectrum of needs for those they care for. Steve, a local dad whose son, 10-year-old Ethan, receives support from the Forget Me Not hospice, spoke of its life-changing work for Ethan and the whole family. Steve said:
“When he’s here he’s comfortable, it’s a lovely environment. It’s not clinical and he’s treated like a normal person.”
They are not just care providers but community builders, offering spaces of comfort and support during life’s most difficult times.
Huddersfield University is leading on joint work with local hospices about research and clinical practice in end-of life-care. It includes working with Kirkwood hospice to create a postgraduate certificate in end of life care, the first of its kind in the UK to link with a hospice. While I am sitting next to my hon. Friend the Member for Spen Valley (Kim Leadbeater), I must pay tribute to how she conducted the debate on her Terminally Ill Adults (End of Life) Bill. There is no doubt that she has moved the debate on funding for hospice care, and I thank her very much.
St Leonard’s hospice in my constituency lovingly cared for my uncle with extraordinary compassion last year in his final weeks. I hear my hon. Friend’s calls for hospices in her constituency but does she agree that, because of their empathy and the important work that they do, we must all campaign for the funding that our hospices desperately need?
I absolutely do. I pass on my condolences to my hon. Friend and his family, and pay tribute to the local hospice and the work that it has done to support his family.
I want to raise NHS England’s £26 million funding for children’s hospices—formerly the children’s hospice grant. Traditionally, that funding was distributed centrally by NHS England but last year, as has been mentioned, it was disseminated by integrated care boards. That has caused delays to many children’s hospices’ access to their funding, including Forget Me Not. It is critical that the funding is ringfenced for children’s hospices, and I hope that the Minister will review whether it can again be centrally distributed, to avoid further delays.
The new funding for hospices is an important milestone. I welcome the Government’s approach and thank the Minister for his work. I know that the hospice sector very much welcomes the additional funding, but can it also mark the beginning of further Government support for these essential services? Hospices are an integral part of our healthcare system, and we must ensure they have the resources and support that they need to continue their vital work, including the specialist doctors and nurses that are needed in many hospices.
Through Government action, community support and the tireless effort of hospice staff and volunteers, we can ensure that hospices not only survive but thrive, continuing to provide the compassion and dignity that every individual deserves.
First, I congratulate the hon. Member for Wimbledon (Mr Kohler) on securing this debate. As a member of the Backbench Business Committee, I can tell him he made a very convincing argument for this debate.
Like others, I suspect, one of my aims this evening is to praise my local hospices, Lindsey Lodge in Scunthorpe and Saint Andrew’s in Grimsby, which both provide care to my constituents. I have particular affection for St Andrew’s, as my father passed away in its care, and my mother actually died on the day she was supposed to move in. That was more than 30 years ago; I have seen how they have developed in the years since, and they continue to provide absolutely superb care. Of course, demand is increasing: demographics have changed, and people are living longer. Hospices do actually ease the burden on the NHS.
St Andrew’s has 133 permanent staff, but more than 400 volunteers. As it happens, I visited St Andrew’s last Friday—the meeting was scheduled some weeks ago, but it was convenient timing for this debate. I do have a specific question for the Minister relating to St Andrew’s, which I will come to later. Voluntary donations in areas such as north-east Lincolnshire are crucial, as they are elsewhere. However, with relatively low incomes and very low property values, when people leave a legacy of a share in their property, perhaps, that does not realise the same sort of return as it would in many other parts of the country.
I could provide a whole list of what St Andrew’s hospice delivers; instead, I will give one or two significant statistics. It delivers more than 3,000 adult in-patient bed nights and 694 children’s hospice at home sessions; it has physiotherapy, creative therapy and social work contacts; it provides spiritual care for its patients and their families. The cost of operating all parts of the charity in 2024-25 is more than £18,000 a day; only four years ago, it was £14,000 a day—a significant rise, as Members will appreciate. Some 80% of that cost has to be earned or raised by the hospice, which, in times of economic challenge, is increasingly difficult. Its statutory income for ’24-’25 is expected to be only 21.5% of its total income. Currently, for every £1 of statutory income, St Andrew’s has to raise £4.60, posing a considerable financial challenge for the hospice, the volunteers and the fundraisers.
I thank the hon. Member for Wimbledon (Mr Kohler) for securing this important debate. As a nurse for 25 years and as co-chair of the all-party parliamentary group on hospice and end of life care, hospice and palliative care has always been at the heart of my work, both in this Chamber and in my community.
I start by acknowledging the fantastic decision by the Government to boost investment in hospices by £100 million—the largest funding uplift in a generation. That is a clear sign that the Government are listening to the hospice sector and responding with actions, not just words. However, this uplift must be the beginning and not the end. This new money will not last forever. We must now take concrete steps to ensure that the awful conditions in the hospice sector that we inherited are never repeated. It is worth noting that while the independent commission on palliative and end of life care recently created by my hon. Friend the Member for York Central (Rachael Maskell) is welcome, it will mainly be about delivery and not funding. We simply cannot wait for a palliative care taskforce to complete its report; that could take months, which this sector cannot spare.
In my role, I hear time and again about postcode lotteries and the chronic lack of funding that plagues this vital sector. Through no fault of its own, John Taylor hospice, which does fantastic work in my constituency, is facing a crisis in funding; it has had to announce redundancies and a reduction in in-patient beds due to the funding shortfall. That story is being repeated all over the country—I am sure many Members in this Chamber have a similar situation that they could share. Hospice care still relies heavily on charity, bake sales and donations to fund much of the work that supports families during their most vulnerable moments. That must change. This postcode lottery not only is unfair, but undermines the principles of universal healthcare. We cannot allow end of life care to depend on where someone lives and how much money they have.
I pay tribute to my hon. Friend the Member for Wimbledon (Mr Kohler) for securing this debate and I thank the Backbench Business Committee for granting it. As he stated, the debate has taken on an added salience since the hon. Member for Spen Valley (Kim Leadbeater) brought forward her Terminally Ill Adults (End of Life) Bill on assisted dying. I hope we can all agree that regardless of what happens to the passage of the Bill, there is an urgent need to address hospice and palliative care. I want to touch briefly on two points: on children’s hospice funding and support; and, more broadly, on inequalities in access to palliative care, which relate to the concerns many of us have about that Bill.
On children’s hospices, I am very proud to have Shooting Star children’s hospice in my constituency in Hampton, to which my hon. Friend the Member for Wimbledon referred. As he stated, as well as serving children and young people and their families in my constituency, it actually serves a very wide area of south-west London, west London and all of Surrey. It provides care and support to children with life-limiting conditions, respite care, family support and, importantly, a bereavement service. From talking to the mother of a teenager who died very unexpectedly from an asthma attack in my constituency, I know that her young teenage friends have been very well supported by Shooting Star as they have been grieving their friend who so unexpectedly and tragically lost her life. I want to take this opportunity to pay tribute to Shooting Star for its incredible work.
Like other hospices, Shooting Star relies on the goodwill and generosity of so many in our community and beyond, skydiving, running, donating clothes and toys to its shops. As my hon. Friend pointed out, it now faces a £200,000 bill as a result of the employers’ national insurance rise. While I welcome the Health Secretary’s announcement prior to Christmas to renew the children’s hospice grant, I reiterate its question which was echoed by my hon. Friend: is this a long-term commitment and not just for the next financial year, and will it be ringfenced? It has told me time and again that it cannot plan for the future if it is living hand to mouth, year to year in terms of recruiting staff and putting services in place.
I thank the hon. Member for Wimbledon (Mr Kohler) for securing this important debate and for his passionate contribution.
It is shocking that, on average, only one third of hospice funding is provided by government, with the rest coming from charitable donations. Rising costs, inconsistent income and a shortage of state funding have left the hospice sector in a precarious position. Indeed, many have had to cut back on the services they can offer and are struggling to meet growing need. A recent meeting of the all-party parliamentary group on hospice and end of life care made for a sobering experience for all the MPs present, because every representative from the hospice sector outlined their fear around the future.
I am blessed to have both Claire House and Zoe’s Place children’s hospices in my constituency of Liverpool West Derby, but we witnessed first-hand last year the seriousness of the situation for hospices with the threatened closure of Zoe’s Place, which rocked us all to the core in my great city. It was unthinkable that something so precious should be lost, but, due to the lack of funds, it was going to happen. However, the community of Liverpool and beyond rose to the challenge by raising an incredible £5 million in 30 days to ensure that this amazing place could remain open. While I have the chance, I want to thank every single individual and organisation who worked relentlessly to make this happen: without them all, the city of Liverpool would have lost Zoe’s Place. There are so many that I could name, but let me thank the Steve Morgan Foundation, the 64 Trust and TJ Morris for underpinning this remarkable community effort. They should not have had to do this.
I am pleased, then, that in December the Government recognised the crisis faced by hospices and committed £126 million to the sector, with £100 million of one-off funding and a one-year extension of the children’s hospice grant, but this is still only a sticking plaster. Hospices need consistent, reliable funding that accurately reflects the cost of care and their value in society to be able to meet the growing demand for palliative and end of life care, to ensure that people have the best possible experience at the end of their lives, and to prevent future funding crises. Hospice sector leaders have estimated that the need for palliative care in the UK will increase by 25% over the next 25 years, and it is clear that long-term reform of the hospice funding model is necessary to ensure that this demand can be met. That is why I back the calls from Hospice UK for the Government to commit themselves to a long-term reform of hospice funding in their 10-year plan for the NHS.
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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.
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.
The expansion of hospice funding is a significant and welcome development, but we must acknowledge that many hospices, including those in my constituency, still face immense financial pressures. Forget Me Not children’s hospice recently launched an urgent appeal to address a £1 million funding gap. The expansion of funding must be part of a larger, ongoing strategy to ensure that long-term commissioned funding for hospices is part of the 10-year NHS plan.
As we know, healthcare inflation runs ahead of general inflation, and hospices have to try to keep pace with statutory salary increases related to the national minimum wage. As with the social enterprises that provide social care in north-east Lincolnshire, hospice staff do not automatically get the increases that go to NHS workers, and the gap is inevitably widening. I raised this matter with the Secretary of State at health questions last week, and I think it will be a growing problem with further NHS wage increases later this year, as the gap between NHS workers and those providing care in hospices and social enterprises widens; it will be about 10% by the time the next increase comes. Needless to say, that is causing difficulties for those employees.
I have a specific question for the Minister, which I will write to him about in the next day or two—I do not expect him to have all the details of St Andrew’s in his pack. St Andrew’s gets only 21% of its income through statutory contributions, which I understand is about 12% below the national average; this has come about because of a whole series of historical adjustments. My plea to the Minister is that St Andrew’s is brought up to the national average as soon as possible.
Hospices across the UK provide care and support to 300,000 people every year. They are an absolutely essential part of our healthcare system, although they are in the charity sector. Every single day, hospices face rising costs of energy, food and medicine; every single day, they deliver exceptional care, even as pressures mount; and every single day, they battle deficits that threaten their ability to continue. Despite all those challenges, our hospices save the NHS millions each year by alleviating pressures on hospitals and providing community-based care. However, their ability to continue this vital work is at risk, and they need long-term sustainable support. We need to face the future head on and fix their funding model permanently.
While I absolutely understand that hospices are under pressure, the integrated care boards that fund them are similarly under a great deal of pressure due to year-on-year budget reductions from NHS England. Asking ICBs to find extra money without it being allocated centrally as revenue is impossible.
Death is a part of life, as the hon. Member for Wimbledon said, and as we all know. Nobody would say we should neglect healthcare, so why are we neglecting the hospice sector by not securing a sustainable funding formula? To truly address the gaps in our system, we need a sustainable funding model that ensures hospices can meet growing demands without being forced to cut services. The people of this country deserve a future where every family, no matter their circumstances, can access the highest quality of end of life care without worry, one where hospice care is not a postcode lottery but a promise.
Let us turn this moment into an opportunity. We must act urgently to implement and improve a sustainable funding package for hospices and palliative care. With constructive action, we can build a system that uplifts the most vulnerable among us, strengthens the NHS and shows the best of what we can achieve as a nation. Let us ensure that the legacy of this debate is not one of uncertainty, but one of determination and passion, and that when we see the 10-year plan, hospice and palliative care will be fully funded going forward.
Hospice funding is so variable. As we have heard, Together for Short Lives reports that NHS funding in 2022-23 for children varied by as much as £483 per child. Hospice UK made a freedom of information request which found, shockingly, that 40% of ICBs have absolutely no idea how much they are spending on children’s palliative care. We need to hold our ICBs much more accountable for children’s and adult palliative care. Together for Short Lives also highlights a £295 million spending gap in NHS spending on children’s palliative care, when compared against National Institute for Health and Care Excellence standards.
That brings me to my second substantive point, on the variability of palliative care with particular regard to how it compares to national standards. Marie Curie estimates that one in four people who could benefit from specialist palliative end of life care do not receive it. People are more likely to get good palliative care, frankly, if they are richer, more educated, white and younger. The inequalities across our society in access to palliative care are growing and demand is growing, too. I had a number of conversations with the hon. Member for Spen Valley. These inequalities are one of many reasons why I really struggled and could not support her Bill on Second Reading. They really, really concern me. Back in 2011—getting on for 14 years ago—NICE recommended that there should be a designated palliative care advice line out of hours implemented in every area of the country, but only one in three areas offers that service. That shows us just how poor we are at putting in place what we have already been told needs to be provided so that people can die a good death. If that happened in any other area of care, particularly in cancer, there would, rightly, be outrage that we were not implementing NICE recommendations.
The 2024 Marie Curie “Better End of Life” report said that large numbers of people were struggling to access services. There was late recognition of their needs and poor communication. It found that the impact on carers of poor end of life care was profound. The physical and emotional toll that it took on carers left one carer saying:
“The overall experience is that no one really cares.”
When we are at our most vulnerable at end of life and our loved ones are also struggling, we deserve so much better. We need far greater investment in palliative care and hospice care. I urge the Minister to take genuine action to address both the geographic disparities and the deep inequalities that exist in accessing palliative care. We have a moral imperative, particularly if the assisted dying Bill makes progress. We cannot be in a position where assisted death is available universally on the NHS to those identified in the Bill, but access to good palliative care is not. That is what grated with me most and why I could not walk through the Aye Lobby that day. I urge the Minister and the Bill Committee to ensure that duties are written into law so that there is genuine choice at the end of life. Whether the Bill passes or not, we need to see much greater action on good palliative care.
I have a couple of questions for the Minister, who has been superb in supporting me over Zoe’s Place. Will the Government ensure that the confirmed £26 million NHS England funding for children’s hospices for 2025-26 is ringfenced, distributed centrally, and increased in line with inflation in subsequent years, and does the Minister recognise the strong preference among children’s hospices for that £26 million to be distributed as a centrally managed and ringfenced grant rather than being distributed via integrated care boards?
Without ongoing Government support and a fresh funding model, what nearly happened to Zoe’s Place in Liverpool will happen elsewhere. Hospices will undoubtedly close down. The problems are systemic, and it will take Government action to fix that. The city of Liverpool rose to the challenge to save Zoe’s Place; now this place has to rise to the challenge as well, and give all hospices the funding that they need to survive. This cannot wait, because all who rely on these incredible services do not have time on their side.