The final item of business is a members’ business debate on motion S7M-00981, in the name of Bob Doris, on hospice care week 2026—don’t leave hospice care to chance. The debate will be concluded without any question being put.
Motion debated,
That the Parliament looks forward to this year’s Hospice Care Week campaign by Hospice UK, taking place from 5 to 11 October 2026, with this year’s theme being Don’t Leave Hospice Care To Chance; values the important and compassionate work that is carried out by hospices across Scotland, with the majority of hospice care being delivered in the community; recognises the demographic challenges that are anticipated in the coming years, with research estimating that 10,000 additional people will be in need of palliative care in Scotland by 2048; notes the belief that there will need to be strong partnership and strategic planning in order to respond to such demographic challenge; welcomes the cross-party consensus in the last session of Parliament on the need to further support the palliative and end of life sector, and notes the belief that a constructive cross-party and cross-sector approach will be vital in this current session of the Scottish Parliament to build on that consensus and more importantly to best deliver for individuals approaching end of life, as well as their families.
17:53
I am privileged to lead this members’ business debate on hospice care week. It enables Parliament to discuss this year’s theme, which is “Don’t leave hospice care to chance”. I thank all those MSPs across the chamber who supported the motion.
During the lengthy and detailed scrutiny of the Assisted Dying for Terminally Ill Adults (Scotland) Bill in the previous session of Parliament, a clear cross-party consensus emerged that we need to sustainably expand, better fund and better co-ordinate end-of-life and palliative care. There was a substantial turnover of MSPs at the recent election, and I hope that we will all, together, pick up the cause of palliative and end-of-life care in the same cross-party collegiate manner that we approached the issue in the previous session.
At the heart of all that sits the superb work of our network of independent hospices. Before I expand on this year’s theme, I want to share a small part of my experience of hospice care in Scotland. My father was cared for superbly, with the utmost love and attention, by St Margaret of Scotland hospice in Clydebank; I have told this story to other members in this place before. Dad was resistant to being there at times, but he ultimately understood that it was the safest, and ironically the most independent, place that he could have been as he approached the end of life.
I still recall taking Dad in a wheelchair for a pub lunch on Dumbarton Road on more than one occasion. The food was rarely eaten, I have to say, but that was not what mattered. The hospice sought to facilitate what was important to my dad in a safe, respectful and dignified way, and I will be forever grateful to the staff at St Margaret’s for the love that they showed to Dad and to our family. I share that small story as a son, not as an MSP. Just like our constituents, we will all have our own individual stories to tell—and they are all deeply personal and all equally important.
I also want to acknowledge that the majority of hospice support happens in our communities, not necessarily in hospices themselves. For instance, in 2025, Marie Curie supported 6,241 patients and provided more than 75,000 hours of care across Scotland for people as they were approaching the end of life. With an estimated 10,000 additional people in need of palliative care in Scotland by 2048, our challenge now is to strategically plan for that demographic challenge across our communities.
We know that, each year, more than 60,000 people die in Scotland and that up to 90 per cent of them will require palliative care, yet research has showed that one in three people are dying without all their care needs being met. As the Hospice UK briefing for the debate highlights, death, dying and bereavement are universal but people’s experiences of them are not. The care that you receive at end of life depends on who you are, where you live and why you are ill. People from minority ethnic communities; those from rural and island communities; quite often those with diagnoses other than cancer; and those experiencing financial hardship throughout their lives are all less likely to access good-quality palliative care.
The Scottish Government’s 2025 palliative care strategy, “Palliative Care Matters for All”, is ambitious. It wants to ensure that appropriate and co-ordinated support is available when required by those with palliative and end-of-life care needs; that their families are supported; and that when services are designed, our hospices, our care home sector and other strategic partners are all directly involved in the planning process. Those ambitions must become a reality and must be delivered consistently across the country in a financially sustainable manner.
There has been some progress. This year, £9.4 million was allocated to hospices by the Scottish Government to ensure that their staff had pay increments met by the Government to match the national health service agenda for change. I anticipate—I certainly hope—that the Minister for Community Care will confirm that that £9.4 million will be recurring in future budgets and that similar financial support will be made available to cover the 2027-28 pay uplift and financial challenges that arise each and every year.
I do not doubt the complexities that are involved, but our hospices need the new national funding framework—which, in 2023, the Scottish Government committed to deliver, I am pleased to say—to be developed and implemented as soon as possible. I would welcome an update from the minister on how that is progressing, including any indicative timetables.
As members may know, I am the convener of the Public Service Reform Committee. I was interested to see that Children’s Hospices Across Scotland, Marie Curie and Hospice UK, in their briefings for this debate, all highlight that they see real opportunities from public service reform. As we reshape our councils, our NHS, health and social care partnerships and social care more widely, our hospices should be viewed as key strategic delivery partners, not simply as commissioned services, once the reforms are complete. The hospices across our hospice network want to be partners in innovation to restructure service delivery in order to do more of what is best for those who are approaching the end of life. In order to ensure that that is done more consistently and that such provision is scaled up in a sustainable way, and to be equal partners in that conversation, hospices need their own financial stability and sustainability.
I will briefly mention some of the opportunities. It seems like a no-brainer that the hospice at home services that hospices provide across the country and the NHS hospital at home service should be developed and delivered in partnership. I am not sure that that necessarily happens at present, but it should happen—that is public service reform in action. We also need to shift much of the £1.1 billion that is spent on hospital care for people in the last year of their life into community support. As Marie Curie reminds us, that amount is five times more than primary care, community health and hospice care combined, which is staggering.
We must reduce the need for unscheduled and distressing visits to accident and emergency and other referrals into the acute sector. Access to clinical advice and expertise, to pain relief or to accessible support 24/7 can prevent acute admissions and save money, but more importantly it can provide better services for those who are approaching the end of life. In 2023, for instance, Highland hospice developed new initiatives through its end-of-life care together partnership with NHS Highland, Macmillan Cancer Support and others; I understand that those initiatives have had a positive impact on unscheduled care and improved the experience of many.
In closing, I return to the theme of “Don’t leave hospice care to chance”. The professionalism and dedication of Scotland’s hospice sector is clear, as is its track record in delivery. Hospices continue to demonstrate an ongoing willingness to innovate and work strategically with the Scottish Government and with health and social care partnerships. Hospices will not leave hospice care to chance, and nor should we as parliamentarians, so I hope that we can continue to work together for the benefit of everyone across all our communities.
18:01
I am pleased to speak in the debate and I thank my colleague Bob Doris for bringing it to the chamber.
Getting hospice care is essential. I speak today from personal experience, having spent 14 years as part of the nursing team at St Margaret of Scotland hospice. I also saw hospice care from the other side, as a relative: my own mum received compassionate care from the team at St Margaret’s. She was always treated with dignity and respect, and my family and I will be forever grateful to everyone at the hospice for the care and compassion that was given to our mum.
I have spoken previously in Parliament about my time working at St Margaret’s. It was a formative experience for me, and I feel that the work that is done there can never really be fully conveyed and understood in only four minutes. St Margaret of Scotland hospice in Clydebank, now ably led by Sister Rita Dawson, has cared for people across the community for 76 years and now provides 42 in-patient beds for specialist palliative and complex clinical care. Each year, the hospice touches the lives of approximately 1,800 patients and families across our communities. It is the largest hospice in Scotland, and it also promotes and supports education and training on specialist palliative and complex clinical care.
As the largest hospice, St Margaret of Scotland provides many services beyond those that members might already know about. That include out-patient care and care in the community, and it also offers a day hospice service that includes blood transfusions, intravenous fluids and antibiotics without referral to the acute hospital services that are provided by NHS Greater Glasgow and Clyde. The hospice provides occupational therapy, physiotherapy, complementary therapies and social work advice, and wraparound holistic care both for patients and for their families.
That does not cover everything, but it is important to mention in order to highlight how vital hospices are and the wide scope of support that they provide 24/7. It should demonstrate that we absolutely cannot leave hospice care to chance. Hospice care staff provide care to patients and families during the darkest times of their lives. More than 60,000 people die in Scotland each year, and up to 90 per cent will need palliative care. As the motion states, research estimates
“that 10,000 additional people will be in need of palliative care in Scotland by 2048”,
and that poses a real challenge ahead for us. Just over a week ago, I attended the official opening of the Professor John Welsh specialist palliative care centre at St Margaret of Scotland hospice, which acknowledges Professor Welsh’s remarkable contribution to palliative care in Scotland and his own commitment to the hospice. I put on record my sincere thanks to Professor Welsh for his work.
The new space upgrades the facilities in the specialist palliative care ward to ensure that they continue to meet the needs of patients and families. It is a fantastic achievement, but it has been achieved largely through fundraising efforts. Those efforts have been massively successful, but that emphasises how hospices deliver crucial services often through generosity, which cannot always be relied on. The Scottish Government provides key funding for St Margaret’s, and that is always most welcome, but it does not go far enough. In order to remain financially sustainable, hospices must also rely on charitable donations.
I would welcome the minister visiting the hospice to see how unique its services are, and how crucial they are to the community.
During the assisted dying debate last session, regardless of our differing views on the proposed bill, we all agreed that palliative care and end-of-life support must be protected and supported. We must continue to champion our hospices and work together, cross-party, to ensure that we get hospice care right. At the final moments of our lives, we should always be treated with dignity and compassion. We need well-supported and properly funded hospices to achieve that.
18:05
I thank Bob Doris for securing time for this important debate. He has always championed palliative care, and I am grateful to him for his interest and energy in doing so.
In the last session, we saw the Scottish Parliament at its best, as members from across the chamber debated the assisted dying bill and explored the realities of end-of-life care. Whatever the individual’s view on assisted dying, there was unanimity of agreement that access to palliative care needed to improve. As a Parliament, we agreed that we would carry forward that ethos of working together, regardless of party lines, to make the improvements that are undeniably needed in palliative and end-of-life care.
Some people are fortunate that they have a hospice on their doorstep, but that is not the case for all. An increasing amount of palliative care is also delivered at home, which is often the preference of individuals and families. Research published by Marie Curie in February this year estimates that around 18,500 people who died in Scotland in 2022 had unmet palliative care needs. As Bob Doris said, that is around one in every three deaths in Scotland. The research goes on to show that, without action, that figure could rise to close to nearly one in two deaths by 2050. There are simply not enough hospices or palliative care spaces in Scotland to cope with demand, even with the increase in home care.
There are also questions about the sustainability of hospice care. It is welcome that the Government has committed £9.4 million on a recurring basis so that staff at independent hospices receive pay parity with their counterparts in the NHS. However, we cannot stop there. We need a long-term funding framework.
As Marie McNair said, hospices raise substantial sums from voluntary donations. However, it is the case that two thirds of hospices were planning on making cuts within the next year or had already made them; such is the challenge in providing care against that backdrop of increasing demand. Those funding challenges mean fewer beds, fewer staff and fewer services delivered in the community. Without that funding security, it is not surprising that staff may feel that hospice care is not a long-term option for them, meaning higher staff turnover and a lack of continuity and stability in service provision.
Both Marie McNair and Bob Doris mentioned their own local hospice, as I am sure will others. Let me recognise St Margaret of Scotland hospice, which, although it is not in my constituency, provides palliative care for many of my constituents, including Bob Doris’s father. I am very proud that CHAS is in my constituency, and I value beyond words the work that it does for children and families across Scotland. However, it also challenges us to think about palliative care in the context of public service reform—and rightly so. It wants palliative care to be the leading edge of those reforms in the health sector: whether through strengthening shared responsibility and accountability across the NHS, local government and the voluntary sector; delivering services closer to home and preventing hospitalisation; demonstrating that reform can mean a better service across the board, and not dropping to the lowest common denominator; or finally showing that the service can be delivered sustainably with ever-improving levels of care. I hope that the minister will address some of those challenges in her summing up.
Families facing the end of life should not have to face uncertainty about whether care will be available. Let our cross-party consensus make the Government drive forward real improvements—because the measure of our palliative care systems is not what politicians promise, but whether every patient and their loved ones are in receipt of the compassion and support that they deserve at the end of life.
18:09
I thank Bob Doris for lodging the motion, all those in the hospice sector for their ongoing commitment to caring for those most in need, and all the volunteers who work tirelessly to raise the funding required.
The theme of hospice care week, “Don’t leave hospice care to chance”, has been mentioned. Hospice UK recently told the Health, Care and Sport Committee that the families who have good care often describe themselves as lucky, but, as the representative said, it should not rely on luck. Therefore, we need to shift the focus from hospitals to care at home or more homelike facilities, where appropriate.
This crisis has been a long time coming. I talked about how essential it is to anticipate and address the needs of an ageing population in an election speech a long, long time ago. We have had time to plan, but this debate demonstrates that we have not prioritised it enough. I do not want to be here in five years’ time, asking, “Where is the plan?”
It is welcome that the Government is looking at a funding framework and talking about what is needed. For those who need care in the last year of life, of £1.3 billion spent, £1.1 billion is spent on hospital care, but it is well known that most people would prefer that to be otherwise. Mind you, you cannot always be sure when the last year is. After a long stay in hospital, my mum was moved to an end-of-life NHS hospital. After a couple of months, it was apparent that she was staying, so we were advised to get her a care home place, where she lived for another three years. It is worth noting that we should not necessarily think of hospices as the end. As CHAS has mentioned, sometimes, people move in and out of hospice care. That can particularly be the case for children with long-term life-shortening conditions. We should help people to understand that, so that they do not fear going to a hospice.
We are interested in alleviating hospital bed pressures and costs, but, of course, hospice care also allows for a more person-centred approach—many people have spoken about what hospices provide—so the expansion of hospice care at home is welcome. Marie Curie, Hospice UK, local services and CHAS provide those services, but NHS services are also moving into this important area.
Recently, I visited NHS Borders, which has some very impressive figures on getting people out of hospital and back home quicker, and those cases are food for thought. I heard about a trial with Marie Curie and district nurses that has helped more than 30 people to die at home, as they wished. We were told about a lady who was deteriorating quickly who was able to get back home to be with her husband of 60 years. That is what joined-up care can do, but it should not depend on where you live, and we must learn from those who are doing things slightly differently. Another point made by general practitioners in the area is that a large proportion of their patients are able to die at home thanks to district nurses and other integrated services. The shared border for the area helps, but NHS Borders has been innovative in working with local authorities and social care, and we should learn from that.
St Columba’s Hospice Care and CHAS say that less than 25 per cent of their costs come from Government. A funding framework cannot be designed around organisations whose own future is in doubt. The cuts that have already happened have been mentioned, but it is not always about money, because we know that some of these things can help the NHS. However, we need to know what is going to happen with NHS and local authority reorganisation, and what happens to integration joint boards is a critical part of that. We must also have multiyear funding—the need for that is always recognised—and we must treat and pay care staff as equals with NHS staff. Again, I thank those who work in the sector.
18:14
I thank Bob Doris for lodging this important motion for debate, and I note the agreement across the chamber.
As others have said, this year’s theme, “Don’t leave hospice care to chance”, could not be more timely. We know that need for hospice care is increasing year on year, and we must meet that need so that people receive the right support, in the right place, at the right time. As public sector reforms unfold, we must ensure that hospice care is accessible, fully funded and truly valued.
Every family who has had a loved one in hospice care has their own story to tell of the care that they received during what is often an incredibly difficult time. In my family, my father-in-law was well cared for in Ayrshire hospice, where he was as comfortable as was possible, with his family around him. My mother-in-law was also able to use Ayrshire hospice’s classes and groups to enable her to maintain a good quality of life for as long as possible.
Hospice care can look like many things. It can be provided within the four walls of a hospice, it can be care in the comfort of your own home or it can be a specialist children’s service, such as Robin house in Balloch, which I visited in September. What brings them all together is the compassion of staff and volunteers, and truly excellent end-of-life care. However, it is clear that there is a lack of equitable access to hospice care in Scotland, often due to a lack of stable funding. That uncertainty is placing immense pressure on hospices and their staff, who are already working incredibly hard to shape services to meet need. Organisations such as Hospice UK and CARE for Scotland are calling for secure and stable funding for hospices and the delivery of a national funding framework for hospice care. That was committed to in 2023 and is a vital way to reduce the pressure on hospices and allow them to focus fully on providing care with dignity and compassion.
It is also important that hospice staff are truly valued for the brilliant work that they do. I was pleased that the Scottish Government provided £9.4 million to support pay parity for hospice staff in 2026-27, but we must go further. Pay parity should be matched to NHS pay year on year. That would ensure not only that hospice staff receive the pay that they deserve but would send a message that their work is of equal importance to the health and social care sector as the NHS. We cannot afford to leave hospice care to chance. Hospice and palliative care play an incredibly important role in our communities, and we must ensure that those life-changing services can flourish, without fear of funding cuts or reduced capacity. Rather, we must enable more care close to home and reduce inequities in access.
I finish by thanking, as others have done, hospice care staff for their incredible work in providing dignity, respect and comfort for people who are dying and their families. The work that they do is truly life changing and has made a difference to families such as mine.
18:18
I thank Bob Doris for securing the debate. I also apologise to members—I am sponsoring an event at half past 6 and have to leave early. I thank the Deputy Presiding Officer for letting me do so.
As Jackie Baillie mentioned, we have a new Parliament. It presents a huge opportunity for us to come together and look at what we need to do to deliver for our hospice sector. Hospice care week is a great opportunity to celebrate those who work in our hospices and deliver outstanding services for our fellow Scots—the compassionate staff, especially those in hospices, who deliver end-of-life care.
It is also a chance for us to come together to do something special in this session of Parliament to ensure that, at the end of the session, we can all, as MSPs, look back and say that we have delivered a long-term approach for the sector. We know what the challenges look like and that people are concerned about them. A poll recently commissioned by King’s College London, carried out by YouGov in 2024, found that 65 per cent of people across the UK were worried about access to palliative and end-of-life care. In Scotland, the figure rose to 69 per cent of residents, which is the highest figure of any of the four nations of the UK.
As has been touched on, the previous parliamentary session clearly demonstrated the need for a different approach and a better framework. During that session, many of us made such arguments during consideration of the Assisted Dying for Terminally Ill Adults (Scotland) Bill, and I sought to introduce a bill that would have established a legal right to palliative care.
I hope that the Government uses its public service reform agenda as an opportunity. If we use a different model, the Government’s priorities can be met, too. We often raise issues relating to delayed discharge and people not getting the care that they need, so there is a great opportunity for our hospice and end-of-life care sector to step up and deliver what we all want to see.
The national funding framework for hospice care is welcome, but a long-term vision needs to go alongside it. The programme for government commitment to provide pay parity is welcome, but lots of other issues need to be addressed in order for the hospice sector to move forward. We need to set the right conditions for the sector so that it can lead the public service reform agenda not only in relation to funding but in reshaping how we deliver and access services. We all need to grasp that opportunity and demonstrate how we can do things differently. For example, we could let our voluntary sector deliver public services, which we are often reluctant to allow.
Today’s debate presents an opportunity for us not only to congratulate and thank the hospice movement across our country but to realise the potential that it offers. Let us try to ensure that everyone—including us, in the future—receives the best care. I hope that ministers will grasp that opportunity. If we get this right, we can all be proud of what we have delivered by the end of this parliamentary session.
Due to the number of members who wish to speak in the debate, I am minded to accept a motion without notice, under rule 8.14.3 of standing orders, to extend the debate by up to 30 minutes. I invite Bob Doris to move the motion.
Motion moved,
That, under Rule 8.14.3, the debate be extended by up to 30 minutes.—[Bob Doris]
Motion agreed to.
18:22
I join others in thanking Bob Doris for bringing the debate to the Parliament. I also commend Miles Briggs, who is a champion of the right to palliative care—it is a pleasure to follow him in the debate.
I join other members, particularly Helen McDade, in recording my thanks to the many hospice staff for the terrific work that they do.
I can tell members that, in the Highlands, long distances mean that hospice care at home is all too often a postcode lottery—in other words, whether someone can die at home with the right support depends largely on where they live—so I will focus my short contribution on the work of Highland hospice and its end-of-life care together partnership.
When Shirley Ann Burgess was diagnosed with stage 4 lung cancer, her family reached out to Highland hospice for help. The hospice’s palliative care response service and its 24/7 helpline meant that she could die in the comfort of her own home, surrounded by loved ones. Her family spoke of the team providing physical support, a comforting presence and emotional relief; as they put it, the carers
“were able to make her comfortable in a way we couldn’t.”
For her husband, the experience made it clear why Governments must prioritise funding for such services. I could not agree more.
I have often spoken about the end-of-life care together partnership between Highland hospice and NHS Highland, which Bob Doris also mentioned earlier. That model works for families and for our health service. Its helpline has already saved about 6,500 hospital bed days. People who receive responsive care at home spend, on average, 15 fewer days in hospital at the end of their lives. Highland hospice estimates that, if the model was scaled up across the Highlands, about £6 million could be saved—an example of the preventative spending that the Government is right to often talk about. That would result in less pressure on Raigmore hospital when it comes to delayed discharge and in families having a real choice about where their loved ones spend those important final days.
Although I certainly warmly welcome the Government’s support for hospices, including funding for pay parity with NHS staff, I urge ministers to support such success stories. A bid from Highland hospice to the social care transformation fund was approved in principle, but commissioning has never followed. In the meantime, Highland hospice has spent around £400,000 of charitable donation money to keep the service running, yet now it is being told by NHS Highland that there is no mechanism to fund the service and that the health board will do so only if directed.
This is really urgent. Four in 10 people in the Highlands who were referred for extra care at home in the last three months of life received none before they died. The Highland hospice board has now committed a further £1 million of its own reserves to test hospice at home in our most rural communities, including many of those that I represent in the far north. The charity is showing real ambition, but we need the public sector to match it.
I put on record that I am incredibly grateful to the Cabinet Secretary for Health and Care, who has agreed to visit Highland hospice. I ask the Government to help to break the deadlock that we have come to. We are seeking that £1 million investment to test hospice at home and extend it across the Highlands. Highland hospice does great work, so I would welcome the minister’s reflections on that and on whether she is willing to meet NHS Highland and Highland hospice to try to break that deadlock.
I will conclude with this: Shirley Ann’s family got the end-of-life care that they hoped for her. Every family in the Highlands deserves the same, and none of them should have to leave it to chance.
18:26
I am grateful to my colleague Bob Doris for bringing the motion to the chamber and for the strong cross-party support that it received.
As has been said, hospice care week has a clear and powerful theme—“Don’t leave hospice care to chance”—and the debate gives us a valuable opportunity to celebrate the work of Scotland’s hospices and to confront the challenges that they face head on.
Hospice care eases the physical and emotional pain of dying—we have heard some personal stories here tonight—and it allows people to focus on living right until the end. However, too many people still miss out. Nearly one in three do not receive the care that they need at the end of their lives.
The majority of hospice care is delivered not in buildings but in the community—in people’s own homes—and that is where demand is rising most sharply. In East Lothian, families rely on outstanding local services. St Columba’s Hospice Care provides specialist support across Edinburgh and the Lothians, and it carries out thousands of home visits every year in East Lothian. I visited the hospice just this morning. The East Lothian Macmillan community palliative care team works closely with GPs, district nurses and families every single day. Marie Curie nurses help the great majority of people in our area to die in their preferred place, which is usually at home.
The care provided is always compassionate, skilled and deeply valued by the communities that I represent. Those services are under real and growing pressure. Research estimates that, by 2048, Scotland will need to support an additional 10,000 people who require palliative care.
Staff are dealing with more complex needs, while hospices continue to rely heavily on charitable fundraising because statutory funding varies from place to place and is often insufficient. We simply cannot leave the future of this essential care to chance or to the generosity of donors alone.
Like others, I welcome the steps that the Scottish Government has already taken. The £9.4 million that was allocated in the 2026-27 budget to support NHS pay parity for independent hospice staff is a significant and necessary move. It helps to address urgent recruitment and retention challenges and builds on earlier investment. The commitment to develop a new national framework for planning and commissioning palliative care that is provided by independent hospices is also welcome.
Those are positive steps, but they must form the foundation for a longer-term, sustainable funding model that keeps pace with rising need and reduces the lottery of local variation. As has been mentioned, during the passage of the Assisted Dying for Terminally Ill Adults (Scotland) Bill, we pledged to take forward work on palliative care. I know that the Health, Care and Sport Committee is also looking at the issue in a lot more detail.
Cross-party consensus already exists on the importance of palliative and end-of-life care. In the previous parliamentary session, we saw genuine agreement on the need for stronger support. However, that consensus needs to be turned into practical, sustained action in this session through genuine partnership between Government, integration authorities, NHS boards, the independent hospice sector and local communities. I agree that public service reform is an opportunity to embed that.
In East Lothian, we understand the particular value of care close to home, especially in our coastal and rural communities. Hospice care is about not only the final days, but quality of life, symptom control, emotional and practical support for families, and dignity at every single stage. It should never depend on where you live or on the success of the latest fundraising appeal.
Let us use hospice care week and this debate to send the clear message from this chamber that we value the staff, volunteers and organisations who deliver this compassionate care day in, day out; that we recognise the demographic challenges ahead; and that we commit to working together across parties and sectors so that high-quality hospice and palliative care is there for everyone who needs it, now and forever.
18:30
I thank Bob Doris for bringing this debate to the chamber, and I thank every hospice nurse, volunteer and fundraiser in Scotland.
I have spent much of my working life studying care and grief, and knowing it. What I have learned is that how a society treats its dying tells you what it values, and hospices are the caring custodian of that value.
Many of us would know Dame Cicely Saunders, who was the founder of the modern hospice care movement, but fewer would know that, in 1948, Saunders fell in love with a patient, Ela Majer David Tasma, a Polish-Jewish refugee, who, having escaped from the Warsaw ghetto, worked as a waiter. He was dying of cancer. He bequeathed her £500, which was equivalent to about £16,000 now, asking her to be
“a window in your home”.
That donation helped germinate the idea that would become St Christopher’s hospice, and led to the movement that led Cicely Saunders to say
“You matter because you are you”
and that it is not just about people having the ability to die peacefully, but having the ability to live until they die.
Who you are shapes how you die. Hospice UK Scotland tells us that more than 60,000 people die every year and that up to 90 per cent need palliative care, and that yet nearly one in three are dying without the care that they need. It is not equal. People from minoritised ethnic communities and rural and island communities, people with illnesses other than cancer and people in financial hardship are all less likely to get that care. Of the £1.3 billion that we spend on healthcare in people’s final year, £1.1 billion is spent in hospitals, often because the system gives people no other choice.
I represent Edinburgh and Lothians East, which is home to St Columba’s Hospice Care and Marie Curie Edinburgh. St Columba’s delivers more than £12 million of care a year and receives £2.7 million from NHS Lothian. Marie Curie Edinburgh delivers more than £8.6 million, with £3.1 million in statutory support. All the rest comes from people—marathons, fundraisers, sweepstakes—but it should not need to.
As other members have mentioned, children’s hospice care matters just as much. Hospice care stays are up 45 per cent in three years and CHAS has launched a £20 million appeal to build and renew its hospices. Last month, some of you will have seen BBC Scotland telling the story of Flora Gentleman, a six-year-old who was autistic and non-verbal and who had lived with neuroblastoma for four years. In December 2024, she was receiving palliative care at Edinburgh’s royal hospital for children and young people. Her mother, Stephanie Kent, who is from East Lothian in my region, said in her complaint that members of the team argued by Flora’s bedside while she was in distress. NHS Lothian upheld the complaint. I was grateful for the cabinet secretary’s involvement at that point. NHS Lothian identified major learning outcomes and said that the recommendations have been acted on, which I acknowledge.
Flora loved Peppa Pig. She loved playing on the beach, splashing in the sea and building puzzles. Her mother, Stephanie, asks an important question, which breaks my heart often: why was Flora given a peaceful room only after she had died and not while she was dying? She calls for dedicated end-of-life suites in children’s hospitals, and for parents’ concerns to be heard, especially when a child is autistic or non-verbal. That is what hospices offer every day and it should be the standard everywhere.
Around 40 per cent of the cost of adult hospice care comes from the Government. However, pay parity is a floor, not a funding model. I will conclude by asking the minister some questions. Will they confirm, in relation to the upcoming budget, that the £9.4 million is recurring and that it will cover next year’s NHS pay awards? Will the Government deliver the national funding framework for hospices that was first promised in 2023? Will it ensure consistent family-centred palliative care in every setting, including for children, and will it consider Stephanie’s call for dedicated end-of-life suites?
None of us will meet death by choice, but what we can choose is whether, when it comes, someone will be there; someone skilled, unhurried, kind and caring. As Bob Doris mentioned, let us not leave that to chance.
18:34
I commend my colleague Bob Doris on securing the important members’ business debate. As the motion outlines, demand for palliative care is only projected to grow. Like others in the chamber, I thank everyone who works within the hospice sector across the country for their supreme care and dedication.
Hospices are a key partner in the palliative care sector and are well-loved charities in their local communities. I am proud of my constituency for many reasons; one of those is the Ardgowan hospice. Despite the financial and economic situation and the deprivation rates in my area, the hospice receives more funding per head of population than most other hospices. The vast majority of that is down to the generosity of the Inverclyde community. That highlights how much people in Inverclyde care about their local hospice. In a smaller area such as mine, few, if any, families have not encountered its services.
This year marks Ardgowan hospice’s 45anniversary. I was honoured to speak at an event at the Beacon Arts Centre in Greenock during the summer. Purple represents Ardgowan hospice and I am always happy to show my support for it, which is the reason for my tie and the Ardgowan hospice badge that I am wearing today. It is also why I took part in the recent annual go purple fundraising campaign. I am proud and delighted to be sponsoring its 45anniversary event in the Scottish Parliament on 24 March next year, which everyone is invited to attend. Forty-five years is a remarkable milestone for a community hospice. I was privileged to meet some of the founding members of the hospice at its annual event, and I was delighted to talk to them and to gain a full understanding about why they felt that Inverclyde needed to have the Ardgowan hospice. The event in March will provide an opportunity to reflect on what has been achieved and to recognise the extraordinary people who have made the achievement possible. In its 45 years, Ardgowan hospice has become one of Inverclyde’s most valued institutions, offering support that extends far beyond clinical care and touching the lives of countless people across our community.
The motion mentions that a large portion of the work that hospices do takes place within communities. Increasingly, people want to be cared for at home. In addition, more patients receive care on the in-patient ward, further demonstrating how the needs of patients are changing and how hospices are adapting. As I have previously indicated in the chamber and as colleagues have touched on in the past, hospices are doing that work with little financial support from the state. Ardgowan hospice delivers essential services on behalf of our health and care system, yet too much of its income is reliant on fundraising and charitable donations. I have already mentioned the generosity of my constituents, but I am sure that the Presiding Officer and other members will agree that vital end-of-life palliative care services should not have to depend so heavily on charitable giving. That is why I support the hospice sector’s calls for improved funding and I have continually raised those concerns in the chamber.
We cannot expect hospices to continue to deliver high quality care to a growing number of patients who have increasingly complex needs without adequate funding. If we were honest with ourselves, if the NHS had to deliver a comparable service, I expect that the cost would far exceed that of the services that hospices deliver. I have been told that the existing funding structure means that smaller hospices often receive less than their fair share in comparison to larger hospices, which also benefit from greater brand recognition and visibility.
In closing, I believe that we need a palliative care system that reflects the realities of modern healthcare, and ensures that everyone who can benefit from hospice support is able to access it when they need it. We need a system that is funded fairly so that smaller hospices such as mine in Greenock can continue to deliver for their communities. The fairer funding model must form part of wider dialogue on palliative care reforms. I hope that the minister will provide an update on that in her closing comments.
Jenni Minto is the final speaker in the open debate.
18:39
I, too, give my heartfelt congratulations to Bob Doris for securing the debate to recognise hospice care week, which took place last month. I know how hard he and others in the chamber have worked to ensure that hospices are promoted—if I can use that word—in the chamber. As others have done, I thank the hospices and palliative care staff who do so much work for all of us.
I wholly support the theme, “Don’t leave hospice care to chance”. I have noted before in the chamber that my father-in-law spent his last few days in a hospice, my own father’s end-of-life care was in a community hospital and I have friends whose loved ones have died at home, with care given by healthcare staff. Each of them received the compassionate end-of-life care that they and their families hoped for, in a loving and kind environment. Is it too much to ask that everyone gets that chance? I do not believe that it is. When it comes to palliative and end-of-life care, I truly believe that, as has been shown this evening, we in the chamber can be bigger than the sum of our parts. As Bob Doris’s motion notes, consensus and a cross-sector approach are vital for us to achieve good life, good death and good grief for everyone in Scotland.
In the previous parliamentary session, one of the secondary schools in my constituency visited Parliament. I met the young people, and, after a bit of chat, the questions started to flow. I was asked, “What have you been doing today?” I had just come out of a meeting talking about end-of-life and palliative care. I wondered whether I should mention that. I decided that I would, and what followed was a conversation about death, what those young people might want when they died and what they might want for their families. I began to wonder what would be said when they got home. After all, we do not talk about death much in Scotland. However, we need to, and that is the strength of this debate and of the approach of not leaving things to chance.
In my office, I have an original piece of art, “The Hungry Caterpillar”, which was gifted after a visit to CHAS’s Rachel house in Kinross. It was created by two wonderful sisters: prints of their feet form the caterpillar’s body. CHAS is an amazing organisation, as many other members have said. It gives children and their families genuine choice and dignity, and, when I visited, I saw the warm and thoughtful care it provides—as others have commented on.
Launching “Palliative Care Matters for All” was such a privilege for me, and I know that the Scottish Government will be working hard to implement it collectively and collaboratively. Jackie Baillie highlighted CHAS’s specific asks, and I have much sympathy for David Green’s comments about Highland hospice, which is a fantastic organisation. Alongside CHAS, it looks at other ways to operate, because those organisations know the communities that they are supporting and the distances that people have to travel. CHAS and Highland hospice know the support that they can provide—to young people in CHAS’s case, but more generally across the Highlands in the case of Highland hospice. CHAS asks that the Scottish Government uses the implementation of its “Palliative Care Matters for All” strategy as a practical test of public service reform, through strengthening shared responsibility and accountability across the NHS, local government and the voluntary sector, enabling more care closer to home, which is exactly what David Green was talking about, too.
Perhaps there is knowledge in that regard that would support the redistribution of the spend that the NHS is making in hospitals, as Bob Doris talked about, because too many people are spending their last year in hospital. There are many helpful voices in other organisations that can help drive that change. I am thinking of Calum’s Cabin, based in Bute, and Oban’s Dove centre—organisations that know the best ways to support individuals and families, who turn to them for support and where there are gaps. Bob Doris and David Green mentioned a number of organisations in rural and island areas. I want everyone in Scotland who needs it to receive palliative care around dying and bereavement support that is based on what matters to them.
As we all know, the hungry caterpillar turns into a beautiful but fragile butterfly. Children are beautiful and fragile, too. Adults are, too—especially those who need palliative or end-of-life care. Let us keep that thought in our hearts as we come together across the chamber to deliver the long-term palliative and end-of-life care that Scotland deserves.
Thank you. I invite the Minister for Community Care, Alison Thewliss, to respond to the debate.
18:44
I want to start by thanking all members who have contributed to this evening’s debate, which has shown the clear cross-party consensus that exists on the importance of hospices and palliative care to all of us and to all of our constituents across Scotland.
I also congratulate Bob Doris on bringing the debate to the chamber and for hosting the hospice care week reception a few weeks ago, which I was pleased to be able to address. It was my privilege to put on record to that audience of hospice leaders, clinical and support staff, volunteers and people who have been supported by hospices this Government’s recognition of the extraordinary contribution that Scotland’s hospices make to people, families and communities across the country.
In much the same way as this evening’s debate has done, that event made it very clear that, as Bob Doris and others have pointed out, the impact of hospices extends far beyond their physical buildings and reaches into homes, care settings and our local communities. At the most difficult of times, hospices play a vital role in ensuring that people living with serious progressive illnesses can access expert symptom management, emotional support and truly personalised care. Their contribution extends to families, carers and loved ones, whom they help to navigate difficult circumstances with compassion and practical support. As was made very clear to me when I listened to the experience of Holly Smith during the hospice care week event, that support has a lasting personal impact long after a loved one’s passing. Cara McKee mentioned the Ayrshire hospice, which provided support not only to her father-in-law but, through its provision of groups and classes, to her mother-in-law. I know that it also runs a much-loved men’s shed, which provides great support to men in the community.
In the context of the delivery of Scotland’s palliative care strategy, which was published last year—I recognise the incredible work that Jenni Minto did to bring that strategy into being—it is important to recognise that the hospice sector is a source of expertise for the wider health and social care system, through partnership working, advice and specialist knowledge. The hospice sector’s leadership in education, workforce development and research helps to strengthen services right across Scotland. Recently, I was pleased to meet the Scottish hospice leadership group and Hospice UK to learn more about the sector nationally, its contribution and its key priorities.
Although the sector is adept at innovating and responding flexibly to changing needs and demands, we recognise the current challenges that hospice organisations face, and we are committed to working constructively with them and their wider partners to address those, where possible.
Our 2026-27 budget provides £9.4 million for independent hospices to help to ensure that they are supported to pay their staff, who deliver essential palliative care services, in line with their NHS counterparts. I was pleased to write to the Health, Care and Sport Committee, which Helen McDade chairs, on 22 October to inform Parliament that that resource has been allocated to NHS boards for immediate onward payment to hospices.
Our programme for government makes clear our commitment to ensuring that pay parity is maintained throughout this session of Parliament, and we are beginning collaborative work with the hospice sector to agree and formalise a mechanism for calculating and embedding support for pay parity across future years’ funding. Bob Doris tempted me to announce funding for future years, but I am afraid that he will have to wait until the budget on 3 December for that. Although that increased funding will help to address immediate pay challenges, we acknowledge the importance of longer-term financial sustainability for hospices. I very much hear what has been said by all members this evening about the significance of funding.
The Scottish Government remains committed to the development of a new national framework to support more effective planning and commissioning of the palliative care that is provided by independent hospices. My officials met the Scottish hospice leadership group and Hospice UK last week and are engaging closely with them to develop terms of reference for that work. It is really important to get that right.
We will work closely with the hospice sector and key partners in the statutory sector to take forward the development of a new national framework, recognising that integration joint boards remain legally responsible for the planning and commissioning of palliative care services, including independent hospices, to meet the needs of their local communities.
Bob Doris mentioned ambulances and A and E. Yesterday, I met the Scottish Ambulance Service as part of its annual review. There is ongoing development and refinement of the links between A and E and ambulance services with hospice care providers to improve the service that they provide and to ensure that they get that right for patients and their families. I know that they have worked with Macmillan to improve that provision and are committed to ensuring that it works well.
Another key issue that I have discussed with the hospice sector is the contribution of independent hospice organisations to public service reform, as we seek to simplify the structure of the NHS and improve outcomes for people and communities. As Miles Briggs and others have highlighted, the hospice sector is well placed in that space, as it often works across arbitrary boundaries and is able to find solutions for people and to work collaboratively. There is clearly an appetite among those in the hospice sector to be actively engaged in discussions on the development of public service reform. They have the potential to contribute positively to that agenda, given their considerable expertise.
Briefly, I welcome all the comments so far. Does the minister agree that we need to make sure that the statutory duties that IJBs have in the planning and commissioning of services do not crowd out collegiate partnership work in the co-production and design of services, and that the hospices are not just a commissioned service but are key strategic partners?
Absolutely. That is key to getting it right—having that collaboration so that things can work well together. If it is simply a somebody-gives-the-money-somebody-takes-the-money relationship, that will not work to make those services effective. I am very open to hearing the views of the palliative care community, including independent hospices, about potential opportunities to consider different ways of doing things that will help to serve people better. I note the comments of David Green about Highland hospice, whose representatives I met at the reception a couple of weeks ago. The cabinet secretary is visiting the hospice, so I do not want to get in the way of that particular meeting; however, if further discussions are to be had on the issue, I am more than happy to have those.
Q Manivannan asked about paediatric end-of-life suites. We are absolutely committed to developing a new paediatric palliative care suite in the Royal hospital for children in Glasgow. A suitable space has already been secured within the hospital, with work to develop the suite being led by NHS Greater Glasgow and Clyde, working closely with CHAS. That project is built on the work of the late Molly Cuddihy, whom we greatly admire, and we pay tribute to her and her family for everything that they have contributed.
Members have talked about hospices in their areas. I should not like to pick favourites or talk about the ones that I have visited so far, but they have left an incredibly strong impression on me. I committed at the reception—as I do again today—that I will do my very best to get around as many hospices as I can, because I really value their contribution and I want to know what they do to deliver for their communities, because people have reflected on how special and strongly loved they are in their communities.
I congratulate the St Margaret of Scotland hospice on its newly refurbished ward, which Marie McNair mentioned and which is named in honour of Professor John Welsh. I thank him for all his contribution to the hospice sector.
I put on record my sincere thanks to everybody who works or volunteers in Scotland’s hospices for all that they do, year round—the difference that they make to people and their families at the most difficult times in their lives.
I also thank everybody who fundraises for those local hospices, because we have heard how valued they are. Often, that personal commitment is what drives people to do that fundraising—to thank and to give back. Stuart McMillan reflected on the very deep roots of the Ardgowan hospice, which I congratulate on its 45 years of service to the community in Inverclyde.
The commitment and connection that hospices have with their communities is incredibly powerful and strong. I look forward to continuing my relationship—and the Scottish Government’s relationship—with the independent hospice sector, to ensure that everybody in Scotland who needs palliative care is able to access that compassionate and high-quality support. As Paul McLennan mentioned, the services are compassionate, skilled and valued. We thank them all for everything that they do, and I look forward to working very closely with them as we move forward.
That concludes the debate, and I close this meeting of the Parliament.
Meeting closed at 18:53.
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