[Relevant documents: Third Special Report of the Health and Social Care Committee, Expert Panel: Evaluation of Palliative care in England, HC 632, and the Government response, HC 1722; and oral evidence taken before the Health and Social Care Committee on 7 January, on Palliative care, HC 632.
That this House notes the findings of the Independent Palliative Care Commission; calls on the Government to implement its recommendations in full, including to establish a comprehensive and specialist palliative care service that is equally accessible to everyone and properly funded, as well as a new commissioning framework that secures a service across all settings and is available from the point of a terminal diagnosis, the advancement of a life-limiting illness or latter stages of a chronic condition; and further calls on the Government to have a focus on workforce planning and training, to provide a comprehensive palliative care service, and to ensure that patients are empowered through future care plans to articulate what they want to happen towards the end of their life, while also establishing bereavement services for all.
I am grateful to you, Madam Deputy Speaker, and to the Backbench Business Committee for granting today’s debate on the future of palliative care. Although I applied for it last summer, it could not be more timely, as the Government consider their modern service framework.
Dame Cicely Saunders said:
“How people die remains in the memory of those who live on.”
By addressing what she called “total pain”—physical, psychological, emotional, spiritual and social pain—palliative medicine could transform not only the way we approach death, but how we embrace life. Her legacy has since driven palliative medicine, with dedicated teams delivering care. Someone told me in York that they did not know
“that such outstanding care was even possible.”
Every complexity is embraced and addressed.
In 2024, 532,000 people died in England. Marie Curie evidence published two weeks ago showed that one in three people fail to get the interventions they need. Despite requiring specialist palliative care, over 100,000 people received none. Demand is rising, and will grow by 42% in a decade. Where someone dies, on what day or at what time determines the care that they receive. Some 42% of all deaths occurred in hospital, 28% at home, 21% in care homes, 5% in hospices and 4% in other settings, such as prisons. According to Sue Ryder, just 50% died in the place of their choosing.
I have had the sheer privilege of working with leading academics and clinicians, health leaders, international experts, charities and people with lived experience, in establishing, with Baroness Finley, the independent commission on palliative and end-of-life care, which is chaired by Professor Sir Mike Richards. We sought solutions to establish equitable access to high-quality palliative and specialist palliative care. I am beyond grateful; I have been inspired and I have learned much.
I am also indebted to Professor Fliss Murtagh from the Wolfson Palliative Care Research Centre at the University of Hull. I make particular mention of Professors Katherine Sleeman and Irene Higginson of King’s College London; Oxford consultant Professor Bee Wee; Hospice UK; Marie Curie; Sue Ryder; the Association for Palliative Medicine; Together for Short Lives; my local hospice, St Leonard’s; and so many more. We held 10 evidence sessions and eight roundtables, received 506 written submissions from experts, and spoke to 129 witnesses. We then presented our report to the Minister.
The hon. Member is making such a powerful speech. I wish to draw attention to Princess Alice hospice in my constituency. It receives 20% of its funding from the Government, and the rest through selling woolly jumpers. Most constituents are not aware of this, but the hospice says that it can provide only a quarter of the provision that is needed in Esher and Walton because of the state of its funding. Does the hon. Member agree that the situation needs to change, not least if we are to make things equitable for everybody in our society?
The hon. Member makes such a powerful case. We are talking about essential medicine. We would not do this in any other field of medicine, yet we are dependent on charities, which do phenomenal work to fund essential healthcare. We must ensure that we fund it properly. I will come on to make a few suggestions about that.
Although I recognise the dedication of St. Leonard’s hospice in my constituency, and the whole community around it in York, which is both generous and caring, it receives less than 24% NHS funding. This year, it got just a 2% uplift from the integrated care board. To invest in equipping it, in staffing in the community, and in building the capacity to meet need, funding will be needed, and there is already a significant shortfall. Without that funding, transition will slow and the model will fail. The sector agrees. ICBs have no transition funding, and without a health transformation fund, how will the Minister be able to deliver proper care for everyone? If patients are moving into domiciliary or hospice settings, funding should follow. Clinical staff, pharma, capital, utilities, and other essential costs should be covered by the NHS, since patients are now transferred from secondary care into the community. The modern service framework is due for publication in a matter of months, and implementation is due in April 2027. It requires a strong framework of accountability and governance, and it would be helpful for the Minister to set out how the MSF will be evaluated, and how outcomes will be measured.
I congratulate the hon. Lady on the work that she has done on this issue. Two hospices serve my constituency—Lindsey Lodge in Scunthorpe, and St Andrew’s in Grimsby—and the percentage of funding that they get through the NHS, as opposed to from charity, varies dramatically. Does she agree that, at very least, we must regularise the proportion of funding that hospices receive from the Government?
The hon. Member is right, and we know how much palliative care, including specialist palliative care, costs. That must be built into the commissioning process at population level, so that we see equity. I am sure that many in his constituency will see certain demographics in his community excluded from being able to access that specialist care. We must drive the model, and if we do not have the funding, resources or staffing, it will be very difficult to deliver the comprehensive service that everybody deserves at the end of life, should they need palliative care.
I am sure the whole House congratulates the hon. Member for York Central (Rachael Maskell) on her immense work on this topic—I certainly do. I am sure that she would sympathise with one of my constituents, whose case was brought to my attention by Marie Curie. The lack of a doctor on duty over a weekend meant that proper palliating medicine could not be prescribed, resulting in a distressing death. Does she agree that as well as consistency in funding, we need care to be consistently available seven days a week and 24 hours a day?
I am grateful to the hon. Member for raising 24/7 provision, and provision in the evenings and at weekends. Research shows that only a small proportion of services are available at those times and access to them is inequitable across the country. We need to ensure that a specialist is available at the end of the phone to support clinicians, family members and patients themselves, and that we have the workforce available to come out to deliver changes to medication or an escalation in care. It is crucial that this is not a nine-to-five service, but a 24/7 service.
Finally, I want to mention bereavement. Bereavement support varies and is often underfunded, if funded at all. Grief costs the economy £23 billion a year, but it costs individuals far more. It can be complex and have a profound impact, especially on children. It is vital that we commission appropriate bereavement support, including counselling and, for some, social prescribing.
In conclusion, palliative care affirms life and regards death as a normal process. It neither hastens nor postpones death. However, to date, access to palliative care has been inequitable. This debate must be a catalyst to providing outstanding care. Our ambition must go beyond the modern service framework. Our duty is to secure excellence in life, until the final breath is taken.
I begin by congratulating the hon. Member for York Central (Rachael Maskell) most warmly on her exemplary record in campaigning for better palliative care. I will address just one segment of her panoramic presentation, namely the work done by the charity that she briefly mentioned, Together for Short Lives. It provided me with a detailed briefing and I apologise in advance if I make some points that others, who may have received the same briefing, anticipate making.
Children’s palliative care enables babies, children and young people with life-limiting conditions, life-shortening conditions or severe medical complexity to live as well as possible until they die. Palliative care for children and young people is defined by the charity as
“an active and total approach to care, from the point of diagnosis throughout the child’s life, death and beyond.”
By embracing physical, emotional, social and spiritual elements, children’s palliative care helps to achieve the best possible quality of life and care for every child with a life-limiting or life-threatening condition and their family.
Giving families an opportunity to set out what they need and want is key to this approach. Children’s palliative care is holistic and is provided by a network of services in hospitals, homes and children’s hospices by the NHS and the voluntary sector, including children’s hospices. These services should be planned, funded and provided in a way that enables children and families to access them when and where they need them.
The key problem is the one that I am about to set out:
“In England, integrated care boards have a legal duty to commission palliative care for children, young people and adults that it considers necessary.
Across England and the wider UK, there is huge variance in the extent to which palliative and end of life care for seriously ill children and young people is being formally planned, funded and provided in ways that meet national and regional standards.
Palliative and end-of-life care is one of the clearest tests of a health and care system. It is about whether people can live their final months, weeks or days with dignity, comfort and choice, and whether families are supported, rather than left to cope alone. It should never be a lottery, yet too often people still experience palliative care as something that arrives too late in a crisis and only after families have reached breaking point. Referrals are delayed, honest conversations are postponed and advance care plans are created at the point when somebody is already too unwell to meaningfully shape them. Families describe repeating the same story to multiple professionals, not knowing who to call at 10 pm on a Sunday evening, and watching distress escalate because there is no rapid response available. That is not what a compassionate system looks like.
I will make three substantive points. First, we must confront the reality of variation and fragmentation. Access to specialist palliative care, hospice-at-home services and community nursing support still vary widely between integrated care boards. In some areas, there is a reliable 24/7 advice line and rapid response within hours. In others, support is limited, particularly out of hours, and families are told to ring 111 or attend A&E.
Funding arrangements contribute to that variation. Adult hospices, which provide extraordinary care, still rely heavily on charitable fundraising, alongside NHS funding. The balance differs significantly between areas, which creates instability and inequity. Hospices such as St Cuthbert’s hospice in Durham do remarkable work supporting patients and families across our community, but like many hospices it remains heavily dependent on charitable fundraising. St Cuthbert’s has recently had to make difficult decisions, including on redundancies and reducing dementia services, as funding pressures grow. At the same time, much of the Government’s announced support has been directed towards buildings and capital investment, at a time when hospices and organisations such as Hospice UK have repeatedly warned that the real pressure is on staffing and day-to-day service delivery. If we are serious about reducing health inequalities, we cannot accept such stark differences in something as fundamental as end-of-life care.
I thank my hon. Friend the Member for York Central (Rachael Maskell) for securing this vital debate. Her knowledge, understanding and compassion for people are outstanding and cannot be matched.
Most people, when they are seriously ill, want to be at home, surrounded by the people who love them and whom they love. I know this personally from my own family’s experience. When my mother was dying, we were told that she had only a short time to live. She lived for another 22 days. During those 22 days, her hand was never left unheld by one of her children. Not once was she left alone. We laughed and talked, and we were able to be there with her. That experience stayed with me and all my family, and we treasure it.
However, not everyone has that support. Some people reach the end of life alone, and we have a duty as a society to care for them too. That is one of the reasons I helped to establish the Willowbrook hospice in St Helens. Like many hospices, Willowbrook was created by the community itself. It was founded in 1993 by people who, like me, believed that families in our area deserved the same compassionate end-of-life care as those anywhere else. Today it is a wonderful place, with beautiful surroundings and gardens, and care that focuses on comfort, dignity, compassion, and people’s family and friends. It is rated outstanding by the Cheshire and Merseyside ICB, and provides short-term in-patient care for people with complex needs, alongside outreach, outpatient care, therapy and education services. The hospice has supported more than 10,000 patients since opening its doors, and it now receives over 1,000 referrals each year.
Hospices exist to care for the individual person and their family. They give people a choice about where and how they spend the final part of their lives. They allow people to be treated not simply as patients, but as people—surrounded by family and friends, supported with compassion and dignity, and cared for in a way that recognises the humanity of those at the end of life. However, the reality is that, as charities, hospices are under enormous financial pressure.
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Now that the Government have progressed to the modern service framework, they must commission a single pathway across all settings, focused on excellence, crisis prevention and investing in the community. We found that early identification for access to high-quality specialist interventions was transformative for patients. At the point of terminal diagnosis or increasing frailty, a serious illness conversation undertaken by well-trained clinicians—as recommended by Professor Sir Chris Whitty—injects an honest understanding to ensure the best patient-centred care, while capturing the patient’s wider social needs, priorities and goals. It facilitates good clinical planning. Co-produced, personalised and optimal care is supported with palliative medicine.
In York, the frailty hub brings all sectors, clinicians and services together. When that is intersected with palliative care, crisis admissions are avoided. Emergency services do not escalate without cause; rather, medicine integrates with the hospice at home team—one team, one set of records, one plan. Avoiding the need for crisis management avoids distress. In the last three months of life, however, almost half of people visited their emergency department, and one in eight spent more than 30 days in hospital. Placing palliative care professionals in emergency departments furthers the model, and allows patients to be triaged to the right service. Clinicians at the back door discharge into community palliative care teams. On the wards, hospital specialists connect with patients, introduce palliative care where appropriate, and seek to discharge to the community, hospice or special hospital unit, reducing hospital deaths and improving disease management.
As our bodies fail, high-stakes interventions add little to the quality or quantity of life, yet they carry risk—as do hospital stays—through infection, deconditioning and disorientation. In a far cry from what happened on the Liverpool care pathway, the focus is on enhancing life, not hastening death.
GPs have a significant role, and I ask the Minister to review the retiring of the palliative care register, which focuses GPs on identifying patients for palliation early, so that interventions can be considered. Can she set out how she will still achieve those aims? People are identified far too late for palliative support—just 56 days prior to death for cancer, and 27 days for non-malignant disease, like respiratory, neurological, renal or cardiac disease. Those with conditions like dementia are rarely ever referred.
While there has been a move away from prognostication of life expectancy, due to its unreliability and often significant inaccuracy, recognition of palliative needs early is key. Marie Curie’s “Better End of Life 2024” report identified that 40% of families had no conversation about deterioration or possible death; 20% were alerted in the last three months of life, and 15% in the last week. Its report, “Measuring unmet need for palliative care”, highlighted that one in three people do not receive specialist care. Its post-bereavement survey in 2024 showed a doubling of unmet need, compared with the 2015 VOICES—views of informal carers: evaluation of services—post-bereavement survey by the Office for National Statistics, which should be reintroduced. That highlights the fact that there is higher demand and poorer access.
Furthermore, we know that those from low socio- economic and ethnic minoritised communities are significantly disadvantaged, and face late identification of needs and poor palliative care access. Without agency and advocacy, outcomes are worse, and that is also the case for those with physical and intellectual disabilities. Such injustice demands change.
Variation exists across integrated care boards. The responses to Hospice UK’s freedom of information requests showed that spend ranged from just 23p to £10.33 per person. The National Audit Office’s report on this subject shows the inequity, too; figures range from one hospice bed per 2,900 patients to one per 54,300, yet provision is mandated by the Health and Care Act 2022. At night and over weekends, 75% of the time, the availability of advice and interventions available to relieve distress, difficulties and discomfort is inconsistent, although 24/7 services are needed. By day, a single point of contact is essential, as the Association for Palliative Medicine has impressed upon me.
Specialist palliative care from highly trained professionals must be commissioned to manage complex pain and symptoms through effective drug titration and interventions like palliative radiotherapy, nerve blocks and neuromodulation, which are often not available. The commission advised rapid escalation of complex cases to specialists, to improve outcomes across all settings. Psychological support is pivotal, yet only 19% of hospices can access clinical psychology. Early assessments can palliate depression or anxiety and their consequences.
Young people with life-limiting and life-threatening illnesses must have equal access to care. Paediatric palliative care differs from adult care but is as ambitious in driving excellence. Tailored, age-appropriate care is needed, and expert parents need recognition for their advocacy, too. I particularly note the concerns about transition into adult services; special attention is needed to get that right.
I turn to training. Family carers provide £28.7 billion-worth of care annually. They need training and support, to be listened to, and, above all, space to love, be and spend time. In addition to training and accreditation of the whole palliative health and social care workforce in domiciliary and residential settings, hospices and hospitals, we need a workforce plan for the whole pathway. All undergraduate programmes must have palliative care content. Specialist training to support GPs aspiring to consultant status needs dual accreditation, and the commission heard that overseas-trained staff need specific orientation to palliative medicine, as each jurisdiction approaches death differently. Across the whole service, we need high standards and united objectives.
In 2024, the cost of dying in England was £24,222. The total for England was £12.8 billion, and 78% of that was spent in hospital settings. By contrast, just £1,017 is spent per person on specialist palliative provision, and £862 on community nursing. Research published today shows that specialist palliative care can save the NHS £7,908 per patient when delivered at home, and £6,480 per patient in hospital. That would save around 1.5 million bed days, or £817 million. Funding for hospice provision—essential healthcare—can no longer depend on bake sales and parachute jumps. Two in five hospices are making cuts, and 380 beds have been lost in a year, according to Hospice UK. Staff reductions and redundancies have occurred. Paediatric palliative care faces a £310 million shortfall, and there has been an overreliance on charitable funding, which is inherently inequitable.
Of particular concern is children and families’ access to end of life care at home”—
we heard this from the hon. Member for Taunton and Wellington (Gideon Amos)—
“24 hours a day, seven days a week, provided by nurses and supported by advice from consultant paediatricians who have completed sub-specialty training in paediatric palliative medicine (also known as GRID training).
Despite some improvements, freedom of information…requests published in March 2025 have revealed that less than a fifth…of ICBs currently commission these services on a formal basis. Meanwhile, over a third…are still failing to meet this established national standard.
As a result, many families feel abandoned by a complex system which should support them to provide care once their child is diagnosed.”
I have been asked by the charity to raise a rather large number of questions, which I am going to cut down to just six, if I can manage to squeeze them in. The charity stresses the fact that the Government’s decision to allocate up to £80 million in ringfenced NHS funding for children’s hospices in England over the next three years is very welcome, but many challenges remain.
These are the six questions that I have picked out of more than a dozen and a half that I was presented with. First, will the Minister confirm that the modern service framework for palliative and end-of-life care, which we heard about from the hon. Member for York Central, will explicitly acknowledge the difference between adult and children’s palliative care and ensure that the needs of seriously ill children are not overlooked?
Secondly, can the Minister confirm that the framework will take a holistic approach and address the wide-ranging needs of seriously ill children and their families, including medical, emotional, social, psychological and practical needs?
Thirdly, will the Minister commit to using the upcoming 10-year workforce plan to examine how the existing children’s palliative care workforce can be used as equitably as possible, organising services into NHS-commissioned children’s palliative care operational delivery networks, such as I gather are used in neonatal care services, in order to help to achieve that?
Fourthly, can the Minister commit to increasing investment in specialist paediatric palliative medicine training by £2.4 million annually to address the funding gap identified by the charity Together for Short Lives?
Fifthly, do the Government support the call of the Royal College of Nursing for nurse-to-patient ratios in all health and care settings? Will they commit to tackling the shortage in NHS community children’s nurses?
Finally, with ICB funding for children’s hospices varying significantly across England, how is the Minister ensuring that every seriously ill child and their family, regardless of where they live, has equitable access to palliative care?
Secondly, palliative care is not simply about the last days of life; it is about quality of life from the point of diagnosis of a life-limiting condition. Early specialist input can provide for symptom control, reduce unplanned hospital admissions and help people to make informed choices about where and how they wish to be cared for. That is why I welcome the emphasis in the NHS 10-year plan on shifting care away from hospitals and into the community, because for many people facing serious illness, the most compassionate and effective care is delivered at home or close to home, supported by community teams.
Thirdly, there are practical steps that the Government can and should take. We need a clear, fully articulated national strategy for palliative and end-of-life care, with measurable standards and transparent reporting. Every area should be required to demonstrate that it provides equitable access to specialist advice, rapid response and co-ordinated care planning, so that the ambitions set out in the 10-year plan to strengthen community-based care are genuinely realised for people at the end of life. We should move towards a model where every part of the country has guaranteed 24/7 access to specialist palliative care advice, backed by community capacity to respond quickly when symptoms escalate.
Workforce is central. Generalist staff in primary care, acute hospitals, community services and social care must feel confident in recognising when someone is deteriorating, in managing pain and other distressing symptoms, and in initiating compassionate conversations. That requires investment, training and protected time, not simply guidance on paper. We must also recognise that hospice and social care services rely on the contributions of migrant workers. Recent changes to visa rules and the right to remain are making recruitment and retention even more difficult, at a time when these services are already under immense pressure.
We must not forget the strain on hospice care for children, as the right hon. Member for New Forest East (Sir Julian Lewis) said. Provision in this area remains uneven, and the stakes are extraordinarily high. Recent campaigning on Hugh’s law has also highlighted the importance of ensuring that families caring for seriously ill children are properly supported and not left navigating complicated systems while dealing with unimaginable circumstances.
Debates on assisted dying are now taking place in this Parliament. I am clear in my opposition to that proposal. I believe that the foundation of a compassionate society must be strong, universal access to high-quality palliative care and end-of-life care. When people are properly supported, when pain is managed, when families are helped and when the highest standard of care is available close to home, the fear and desperation that often drive these debates are significantly reduced. If assisted dying were to become available on the NHS, it would raise important questions that are already being asked by professionals in palliative care and across the health system about our priorities for healthcare. Access to compassionate and properly resourced end-of-life care should never become the secondary option. I ask the Minister to set out how the Government will reduce the postcode variation, strengthen community and out-of-hours provision, provide stable funding frameworks—particularly for hospices—and ensure that workforce development is prioritised.
This is not an abstract policy area. It is about whether, at the most vulnerable point in someone’s life, the system is fragmented and reactive or calm, co-ordinated and compassionate. We owe it to patients and their families to get this right.
At Willowbrook, around 30% of funding comes from the ICB; the remaining 70% must be raised locally. That comes from 10 charity shops in St Helens and Knowsley, donations, the occasional legacy gift and, of course, sponsored walks. It costs £3.8 million each year to run the in-patient unit alone. In a community that is not particularly affluent, raising that level of funding year after year is incredibly challenging. The hospice is currently facing a large deficit. If this pattern continues, it could be forced to close within five years. The annual increase from the ICB was 2.2% last year and is 2.3% this year, but it is dependent on efficiency savings. The increases do not keep pace with inflation and are confirmed to the hospice partway through the year, which is very late, forcing it to set its budget without certainty. In truth, it is operating on a knife edge. The solution must be fairer funding.
Patients who are medically fit for discharge, but who have no care package available at home, will be told that they do not meet the criteria for residing in a hospital, which is there for patients receiving treatment. Not many people know this until they get to that stage. There is no ready solution for people at the end of their lives if they are not receiving treatment in hospital or at home. We need funding for Willowbrook because it cannot meet the NHS nursing pay awards and is losing staff to NHS employers that can offer higher salaries, yet it is delivering NHS-commissioned care. The funding must reflect that reality, and it should pay NHS rates for hospice staff.
However, we also need wider reform. The Government must get down to facing our end-of-life care crisis. It is not good enough to finance existing hospices, although such finance is needed, because a holistic infrastructure must be developed. Hospices are established only where individuals have developed them; they are not equally distributed everywhere. That means we need a clear national strategy for end-of-life and palliative care, including a national service framework; better data to understand where care is needed most; clear goals for improvement; and proper palliative training and resources for health and palliative care staff.
Hospices such as Willowbrook show what compassion and end-of-life care can look like. Many people want that at home, and as I know, it can be provided at home, but without sustainable funding and a coherent national approach, such a service cannot continue to do the extraordinary work that so many families depend on and that the staff in nursing homes and hospices provide.