That this House has considered the ageing community and end of life care.
I thank the Backbench Business Committee for selecting this subject for debate. I declare an interest as the son of Mona Shannon, who is 94 years young and resides in a nursing home near Killyleagh in my constituency. Along with most other middle-aged sons or daughters—in my case, maybe a wee bit more than middle-aged—I am acutely aware that time is marching on and so are my mum’s needs.
The wee five-foot-nothing lady who kept three six-foot sons under control is no longer to live alone, but she is as sharp as a tack and I am thankful for the wisdom she gives me when I visit her twice weekly. Indeed, I suspect that every Friday and every Sunday I get a wee bit of wisdom—and maybe a wee bit of a telling off. She always likes to know what happens in this House and I am able to tell her that, but she will also give me her opinion, which I never ignore—indeed, I probably keep to it as much as I can.
Those visits to the nursing home, coupled with the focus on assisted dying, have highlighted to me with greater effect the changes that are needed in how we handle our older generation and their needs. I have spoken with representatives of both Sue Ryder and Marie Curie not simply to highlight the difficulties that most of us will be aware of, but to offer some ways that we can improve.
I am pleased to see the Under-Secretary of State for Health and Social Care, the hon. Member for Glasgow South West (Dr Ahmed), in his place. He and I are becoming a bit of a tag team, because on three days this week he has been the Minister responding to the debates that I have been involved in. The shadow Minister, the hon. Member for Hinckley and Bosworth (Dr Evans), has been there as well, so he should not be left out.
According to Marie Curie, in the next 25 years in Northern Ireland—I know it is not the Minister’s responsibility, but I want to give the stats, because they are important— there will be 20,500 people requiring this type of care, which is a rise of 32%. That includes a doubling of need by those aged over 85. It is also projected that the number of deaths in the community in Northern Ireland could rise by 74% during that time. Approximately 60% of the cost of care delivered through the independent hospice sector in Northern Ireland is reliant on charity. That is unsustainable. A new palliative care strategy for Northern Ireland that takes account of demographic changes and associated requirements for service transformation and investment is urgently needed.
That is what is happening in Northern Ireland, and in the mainland, things are very similar. Marie Curie has highlighted that as the population ages, more people will be living with and dying with multiple complex conditions. Every week in my office, when it comes to assisting those of my mum’s generation—and perhaps some of my own—with benefits, I see people with multiple complex needs more than ever. It is not just one thing that people are suffering from, but a multitude of things.
By 2050, the number of people in need of palliative and end-of-life care in the UK will rise by 147,000 to over 745,000 every year, and that increase will be driven by a growth in the number of people dying over the age of 85. These are really important stats, and we cannot ignore them; indeed, I believe the Minister will be focusing on them. Around 90% of the people who die each year need palliative care, but one in four of them is missing out. Older people, and particularly those with a non-cancer diagnosis, are at risk of missing out on the palliative care they need at the end of life. Research indicates that most people want to receive care at the end of their life and die at home. Elderly people tell me that all the time—they want to be at home.
I am grateful to the hon. Member for giving way; I know he is pressed for time. The charity Together for Short Lives points out that where children’s palliative care is concerned, there is wide variation across different regions in the country. Is he afraid that this applies to the ageing population as well—that there is no consistency in the amount of palliative care available?
I thank the right hon. Member for his intervention and for the wisdom that he brings to all the debates he participates in. The Minister is listening, and he is a good Minister, so I know he will come back with the response we hope to have.
How often have we listened to family members who are past themselves with exhaustion and guilt about how they are caring for their loved one and who feel unprepared and yet unwilling to let them go into nursing care? With more support, their lives would be easier and their loved one’s life happier. This knowledge is why I was not surprised to learn that almost £12 billion of public funds was spent on healthcare for people in their last year of life, 81% of which was spent in hospital, with only 11% spent on primary and community care.
Access to a 24/7 palliative care advice and support telephone line has been recommended as a minimum service requirement for nearly two decades, but research shows that very little has happened, which underlines the issue that the right hon. Member for New Forest East (Sir Julian Lewis) raised. Only seven of the 42 integrated care boards in England said they have a dedicated 24/7 single point of access to palliative and end-of-life care advice, guidance and onward referral to other services, when needed—those are all important factors.
Despite the introduction of a new legal duty for ICBs to commission palliative care services in the Health and Care Act 2022, the urgency and importance of ensuring that everyone has the best possible care and support at the end of life has yet to be recognised as a national priority. I hope the Minister will be able to provide assurance on this, because that is what Marie Curie wants, it is what Sue Ryder wants, and it is what every mum, dad and family member wants as well.
The day I get to intervene on such an amazing Member is a remarkable day. I live in a very rural area where there are places with real socioeconomic deprivation. I know for a fact that there is huge inequality in those kinds of areas when it comes to palliative care. Does he agree that the Minister and the Government need to look at how to reduce that inequality over the next 10 years?
The hon. Member is absolutely right. Politics aside, I want the Minister and the Government to do the job. It does not matter who the politician or the political party is; let us just give our people some hope. That is what I wish to see come out of this.
What assessment have the Government made of the need for a national strategy for palliative and end-of-life care? How will the Government ensure that palliative care specialists are included in neighbourhood health centres? What progress are the Government making on ensuring that every person with palliative care needs in the UK has access to a 24/7 support and advice line?
I believe that we can find a route towards an acceptable standard of life not simply for those who can afford private healthcare, but for all in our ageing communities. I understand that the Minister has a copy of my notes, and my seven points will be in there. To realise the 10-year plan objectives, which I have clearly said I support and want to see happen as soon as possible, palliative and end-of-life care must be recognised as a vital part of our health and social care system. Without making palliative and end-of-life care a priority for health reform, the Government will not achieve their bold ambition to provide more care in the community. I want the Government to achieve that ambition.
I spoke earlier to the hon. Gentleman to ask if he would take an intervention. When earlier this year my mum was placed on end-of-life care—she was put into the local hospital to receive that care—I had to repeatedly ask hospital staff to transfer her to our local, excellent Eden Valley hospice. It took three days for that request to be actioned. Does the hon. Gentleman agree that one change we could make is that, when someone in our hospitals is placed on end-of-life care, their families could be immediately apprised of the alternative provision that exists in our communities?
The hon. Lady is absolutely right—by the way, that is one of my seven points. We have spoken, but not exactly about that. The debate brings us together with our requests for the Minister and the Government; we are thankful for that.
Only 38% of those who died aged 85 or older received care from palliative care specialists, compared with 51.5% of those aged 65 to 84 and 59.3% of those aged 18 to 64. To the point made by the right hon. Member for New Forest East, most aged 18 to 64 spent most of their final months in a private home, but fewer than 50% of those aged 65 or older did so. One in seven people—15%—who died in hospital had been in there for less than 24 hours. When someone is coming to their last days, many complex needs are involved—there are also the problems for the family—but they will have to deal with two things in particular: pain, and probably breathlessness.
Almost two thirds of unpaid carers felt anxious most or all the time about the dying person’s illness or treatment. Shifting care from the hospital to the community would benefit older people, support the shift from hospital to community—analogue to digital—and prevent avoidable emergency care admissions. Those are all things that the Government must develop in a national strategy for palliative and end-of-life care.
The strategy must deliver on these seven points. First, an integrated whole-system approach is needed enabling patients at the end of life to move seamlessly through services as their health changes. Secondly, the Government must place palliative care at the centre of plans for neighbourhood health centres and ensure the inclusion of palliative care specialists. A key benefit of including palliative and end-of-life care in neighbourhood health centres will be the earlier identification of palliative care need and greater uptake of advance care planning.
Thirdly, the Government implement models of emergency and urgent care that can minimise avoidable accident and emergency visits. That would provide financial savings for the NHS as well as giving better care in a better system. That also comes to the input of the families, which is the very thing we all wish to see.
Order. Before I call the first speaker, Members will have noticed that we are pushed-ish for time, so I ask them to keep their comments to around eight minutes.
I thank the hon. Member for Strangford (Jim Shannon) for securing this debate, and I draw the House’s attention to my entry in the Register of Member’s Financial Interests. I am an officer of the all-party groups on carers, and on housing and care for older people, and I was formerly chief executive of the Centre for Ageing Better.
As ageing is a subject close to my heart, I decided to check out my latest personal life expectancy projection according to the Office for National Statistics life expectancy calculator, and it turned out that I have a one in four chance of living to 95. Many people would think, “Oh, how fantastic!” Yes, we all want to live longer, but not everybody will enjoy that same life expectancy. We know that there is a significant gap—about 19 years—in life expectancy between the most and the least deprived. That gap is reflected across the country, as well as in my own constituency, between Wharfedale and Windhill and Wrose.
Despite the tech bros trying to defy ageing and death through all sorts of techniques, in reality we are mortal and we will all face death at some point. More of us will die at older ages because of increased life expectancy. To be honest with hon. Members, death is a boom industry, and if they have not already invested in a funeral director, that might be something to look at. The post-war baby boomers are now in their 60s, 70s and heading into their 80s, so more of us will be dying in the coming decades.
Society needs to change in a number of ways to respond to our ageing society. Departments across Government are looking at related issues, including working for longer, which is a matter for the Department for Work and Pensions, and ensuring that we build new homes that are accessible. I will be speaking to the Minister for Housing and Planning, who summed up in the previous debate, about bringing in new regulations to make homes more accessible.
I thank the hon. Member for Strangford (Jim Shannon) for securing this debate. It has been a pleasure to see his passion for his community and for the people of Northern Ireland, especially as a member of the Northern Ireland Affairs Committee.
Care at the end of life and ensuring dignity, compassion and community in every chapter of life is so incredibly important. I pay tribute to Weston Hospicecare, and particularly to Paul Winspear and his amazing team, who are an extraordinary example of what compassionate, community-based care can achieve. Their current director of patient services, John Bailey, retires in December after 30 years of dedicated services. Paul, the chief exec, describes John as a “truly exceptional” person, and I absolutely agree.
Founded in 1989, Weston Hospicecare supports more than 1,000 patients and families each year, serving a population of around 225,000 people from Clevedon to Burnham-on-Sea and from Cheddar to Weston-super-Mare, Worle and the villages that surround my constituency. It is hard to find somebody in my town whose life has not been touched by Weston Hospicecare’s dedicated team; my family is no exception. Weston Hospicecare helped us during some of our darkest times. I have a personal mission to help safeguard the future of this important facility. Its dedicated team provides in-patient, day hospice and community nursing services alongside physiotherapy, counselling and bereavement support, all free of charge.
Weston Hospicecare truly embodies the spirit of my home town—caring, community-minded and determined to do the right thing—but it is important to acknowledge the pressures that it faces daily. Weston Hospicecare receives only around 18% of its operating costs from the NHS, compared with a national average closer to 29%. The rest must be raised through community fundraising, shops and donations. The generosity of our community is remarkable, but it is being stretched to its limit, despite some of the most innovative approaches to fundraising that I have witnessed. I am genuinely, truly impressed by what Weston Hospicecare has been able to achieve.
I congratulate the hon. Member for Strangford (Jim Shannon) on securing this important debate.
It is well known that our population is ageing, with the latest census showing that people aged 65 and over account for 19.1% of the total population in Surrey. That figure is predicted to increase to 25% by 2047. In my constituency of Epsom and Ewell, there are brilliant charities working to support the older population, including Age Concern, which empowers older people to live the most fulfilling lives they can while providing services, including advice, medical transport, social support and befriending. Organisations such as Age Concern are a vital lifeline for many, especially following the Conservatives’ failure to fix social care and invest in preventive measures that support older people to stay in good health.
Our older and ageing communities also need to be able to access public services, including GP provision. According to Age UK, the number of full-time equivalent GPs, including trainees, increased by just 2.5% between 2023 and 2024, which is not keeping pace with the population growth of older people aged 75 and over. Many GPs are heading towards retirement, leaving an even bigger gap, so the Government must go further with plans for recruitment. There needs to be a concerted effort to build a strong, resilient GP workforce that prioritises retention and delivers services that stop older people from ending up in hospital due to delays in primary care.
Along with GP provision, access to social care services is vital. With an ageing population, we are seeing more and more older and frail carers supporting their spouses, putting a further strain on the carer’s own health. We need to do more to support, protect and empower older people, so will the Minister commit to reversing the Conservatives’ cuts to public health funding and facilitate a social care system that is accessible to older people, encourages preventive care, and tackles key issues such as loneliness and frailty?
Fourthly, the Government need to strengthen the statutory guidance on the legal duty to commission palliative care services in the Health and Care Act 2022. Holding integrated care boards to account for the delivery of this duty must be part of that. Fifthly, we must introduce national quality standards for palliative and end-of-life care that must be met in all health and care settings. That would strengthen accountability while catalysing the 10-year health plan’s targeted shift from hospital to community for patients at the end of life. They must also support more equitable implementation of the vision set out in the ambitious national framework for local action.
Sixthly, there must be access to 24/7 support—the very thing being asked for—by creating a universal gateway to 24/7 specialist palliative and end-of-life care advice, guidance and support through NHS 111. In my constituency, we would say “yin, yin, yin.”
Seventhly, there must be a long-term, sustainable funding solution for palliative and end-of-life care that can reduce reliance on charitable fundraising and ensure parity of esteem for the NHS and non-NHS palliative care workforce. A transformation fund must also be created to invest in innovative and integrated models of care to meet different community needs. The Minister is probably saying, “My goodness, is it just seven points?”, but yes, I will stop at those seven, although I would like to comment on Sue Ryder if I may.
All of these stats can become figures on a page, but when I read them I think of the wee mummy lying on her bathroom floor after a fall, all night in tears; I think of my constituents who sob in my office, begging for help with their dying parent; I think of carers who are run ragged and know that a 15-minute call with that elderly person cannot possibly cater to their hygiene needs as well as feeding them; I think of district nurses who are late home because they would not leave their elderly patient upset after a wound change, and who made them a wee cup of tea and stayed for that comforting chat that time had not been allocated for.
Professor Jugdeep Dhesi, president of the British Geriatrics Society, said:
“Everyone should have access to high quality care until the end of their life, including palliative and end of life care when they need it. Sadly, this is not the case for many older people across the United Kingdom.”
Sue Ryder also asked me to highlight some issues. It is working to create a new ecosystem around palliative and end-of-life care, and to unlock hospital productivity through swiftly shifting care to the community in a progressive way that is sensitive to the resources available across the wider system, and focused on genuine collaboration at a local, place, and system level. The envisaged ecosystem would absorb patients from across the acute setting and increase referrals to community settings, helping our wonderful NHS to use its bed capacity more effectively, and relieving strain on the discharge system. The Sue Ryder model will shift care into the community by increasing hospice-at-home services and virtual wards, funded in line with national currencies and fast-track CHC reform. It is believed that this new approach to hospital care will develop dedicated care, alongside suites on NHS sites to provide compassionate, tailored care for those approaching the end of life, and to relieve pressure on hospital teams.
We must increase support for people in their own homes—that is what I want, what the hon. Member for Carlisle (Ms Minns) wants, and probably what we are all seeking. It is about expanding care in the community through partnerships, virtual wards, and increased hospice-at-home services to help more people die at home and reduce emergency admissions. We must aim to make full use of hospices’ expertise and space to support people with complex multi-morbidities and those in the last 1,000 days of life, preventing emergency admissions and helping people to live well.
I will keep to your timescale, Madam Deputy Speaker; I am coming to the end. The end of life is not a happy topic, but I believe it is a necessary conversation. We must open that conversation to ensure that people feel able to record their wishes for the end of life, so that more of their needs are met by the people involved in their care. We must ensure that there is information, and above all funding to deal with the growing pressure—the family issue that the hon. Member for Carlisle referred to—because how we treat the most vulnerable in our society is the measure that we will all be judged by.
I am no better than anybody else, but as elected representatives you and I, Madam Deputy Speaker, and everyone in the Chamber want to do the best for our people. Today we ask for the best for our people. I work alongside my mum to ensure that her last time on earth is the best we can make it, and I know I can safely say that it is the desire of this House and the Minister to provide that for every person in the United Kingdom of Great Britain and Northern Ireland. But we cannot do it without Government buy-in, or without help from the Minister, and from the Labour Government and those in power. The hospice sector is looking for a way to do things better, so I ask the Minister to join those who know this issue inside out, and find a route to help our ageing community and those in end-of-life care. That is also from Marie Curie, Sue Ryder and Professor Dhesi—all those people, and all of us as MPs on behalf our constituents.
Thank you for your time, Minister, and I look forward to your response.
In addition, we need to reform end-of-life care. By 2050, it is projected that an additional 147,000 people will die per year, bringing the total to 745,000 per year. As the hon. Member for Strangford said, the people who miss out on end of life care are more likely to be older, from black and minority ethnic communities, from lower socioeconomic communities or to have a non-cancer diagnosis. There is a lot to do to close the gap in access to palliative and end-of-life care, particularly for older people.
An example of really good practice in Bradford is the REACT model—the Responsive Emergency Assessment and Community Team model. If you have not already visited, Madam Deputy Speaker, you may wish to do so. It is a partnership between the Marie Curie hospice and Bradford Royal infirmary. A palliative care doctor is embedded in A&E, so when people who are at the end of life are hitting the accident and emergency department, they get an intervention, assessment and referral back to a proactive multidisciplinary community-based team. The results are staggering in reducing the number of hospital bed days that people at end of life experience.
As we have heard, most people do not want to die in hospital. I commend the shift that this Government are looking to make from hospital to community, which I hope is as true around end-of-life care as around other services. However, there is a huge lack of consistency between integrated care boards in how and what they commission. There is much to do to support better care in the community, including providing better support to GPs, particularly those with a specialist interest in end-of-life care; having district nurses working more closely with primary care teams and embedded within the new neighbourhood health teams; more examples of hospice at home and multidisciplinary community teams; more training for care home managers and staff; and the innovative use of unused hospital wards to provide hospice services in hospital, where appropriate.
As has been mentioned, we must ensure that there is a 24/7 hotline for patients and, importantly, for their carers, so that when they find themselves in crisis at home, they can get access to the advice that they need. The National Institute for Health and Care Excellence has said they should have had access to such advice since 2011, but according to Marie Curie, only one in three areas has such a 24/7 hotline.
While there are examples of good practice, there is much to do. It is good news that more of us are living longer, but society has to adapt. I am pleased that we are doing things as a Government—we have a pensions commission and the Casey review looking at social care—but I say to the Minister: now is the time to have a national strategy for palliative and end-of-life care. We are an ageing society and we need that, along with reform of continuing healthcare. In his response, I hope he will set out how we ensure that everybody dies well in old age and has a good death.
Over recent years, hospice funding increases have fallen well behind inflation. The national living wage increase has rightly lifted incomes, and I am entirely in favour of it, but that and other factors have increased staffing costs for many hospices. Weston Hospicecare faces an annual deficit of £500,000—roughly 10% of its £6 million budget—and it has had to dip into reserves, which now stand at less than six months’ cover. For such vital services that mean so much to my community and to the communities around us, we must find a better way.
Despite that, Weston Hospicecare continues to deliver outstanding value. It provides care for patients with complex, multi-morbid conditions who would otherwise occupy hospital beds or require costly community nursing, and it is relieving pressure on the NHS in my town. Weston Hospicecare saves the health system money while delivering really outstanding outcomes for patients and families.
The Government’s recent £75 million capital investment in hospices has been so important. Weston Hospicecare has benefited from it, and is particularly grateful for it, as am I, but we all recognise that while one-off capital investment is welcome, it cannot by itself secure the future. We need a sustainable commissioning model and fair funding for the essential, specialist care that hospices provide, while allowing them to continue raising community funds for services that are so often seen as optional, but which are in reality vital, such as family support, bereavement care and the holistic and therapeutic services that help people to live and die well.
This issue is also about the wider fabric of our communities. In coastal towns such as Weston-super-Mare, where we have higher proportions of older residents, fewer large employers and sometimes higher levels of isolation, hospices—in particular my hospice—are part of what hold our communities together. They offer not just care and employment, but training, volunteering and opportunities for young people to build meaningful careers in care. One of my best friends, John Williams, has been a carer his whole life. All too often, what I consider to be a vocation—a profession—is undervalued. That is something that we must change.
When we talk about ageing and end-of-life care, we must see it not as a burden, but as a mark of who we are—a society that values every life at every stage, and sees worth in all human life. Weston Hospicecare is a beacon of that principle, and with the right long-term funding framework, I believe it and other providers like it across the country can continue to serve our communities for decades to come.
As our population ages, more people will be living with—and dying with—multiple complex conditions. Marie Curie reports that by 2050, the number of people in need of palliative and end-of-life care will rise to over 745,000 people per year, which is 147,000 more than at present. One local family in Epsom and Ewell have shared their experience of struggling to access hospice care for a loved one with a terminal illness. Despite their efforts, no hospice place was available, and delays in pain relief made their loved one’s final days distressing, something that could have been alleviated by better funding and co-ordination of end-of-life services.
Funding cuts and years of neglect under the previous Conservative Government have led to reduced services, which has a direct impact on patients and their families, who deserve dignity and support in their final days. The Liberal Democrats have proposed exempting health and care providers from increases in employer’s national insurance contributions, yet the Government have ignored that proposal and have not provided much-needed support to the social care sector. In a further damning development, a report released just this week by the National Audit Office revealed that nearly two thirds of independent hospices in England reported a deficit in 2023-24. As a result, services have been slashed and hospices have been forced to cut the number of beds available, due to a lack of Government funding.
With hospices and care services under strain, people desperately need support, and families often have no place to turn. There have been a number of successful and ongoing pilots by local NHS trusts of dedicated phone lines for palliative and end-of-life care needs. The Thames Valley pilot advice line led to a reduction in ambulance conveyances, a 35% reduction in referrals to out-of-hours primary care, and a fourfold increase in calls closed with no further intervention required. NHS 111 is a brilliant service, but it is not always appropriate. Access to a specialised palliative care expert can alleviate patient anxiety, streamline support and facilitate better care. That is something that I urge the Minister to investigate.
Will the Minister commit to ending the postcode lottery of funding for palliative care, create a dedicated hospice workforce plan, expand carer’s allowance, and provide guaranteed respite care before end-of-life care eligibility begins? As we manage the ageing population and navigate end-of-life care, this Government must put patients first and prevent a devastating erosion of public services, tackle dangerous understaffing, and support people to age well in their community.