Meeting of the Parliament [Draft]

Meeting date: Thursday, February 29, 2024

Official Report 1120KB pdf

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Marie Curie’s Great Daffodil Appeal 2024

Members of the public are welcome in the gallery, but I invite those who are leaving to do so quickly and quietly, please, because we are about to start our next item of business.

I say to members that we will meet again at 2 pm; therefore, although I appreciate the importance of the debate, I will have to ensure that all members stick to their allocated and agreed speaking times, to allow the staff to do what they need to do to ensure that we are ready to start again at 2 pm.

The next item of business is a member’s business debate on motion S6M-11892, in the name of Paul Sweeney, on Marie Curie’s great daffodil appeal 2024. The debate will be concluded without any question being put.

Motion debated,

That the Parliament welcomes Marie Curie’s Great Daffodil Appeal 2024, which runs throughout March; considers the Great Daffodil Appeal to be Marie Curie’s most prominent awareness-raising appeal; notes that Marie Curie is the largest provider of palliative and end of life care for adults in Scotland; understands that Marie Curie has found that around one in three working age people who die do so in poverty; considers that deprivation and its associated challenges are exacerbated at the end of life; recognises that Marie Curie is able to support people to die at home, if that is their wish, through its Hospice Care at Home team, in 31 out of 32 local authority areas; commends the work of the two Marie Curie Hospices in Edinburgh and Glasgow in providing inpatient care and support for community palliative care; further commends Marie Curie volunteers who, through its companion service, help to tackle isolation and loneliness at the end of life; understands that Marie Curie cared for and supported almost 8,000 people in Scotland in 2022-23 to die in a place of their own choosing; further understands that, despite the best efforts of Marie Curie and other providers of palliative and end of life care, demand for palliative care will increase as Scotland’s ageing population means that by 2040, 60,000 people will die with palliative care needs, which is 10,000 more per year than currently; considers that this rising need for palliative care places a burden on unscheduled care services, reportedly costing the NHS £190 million per year, and unpaid carers, many of whom are ageing or ill themselves, to deliver care and support; further considers that it is likely that many will require more complex palliative care support, as people projected to die with multi-morbidities will reportedly increase by 82%; believes that the current unmet need and growing demand for palliative care will ensure that the care and support from Marie Curie remains an essential service in Scotland; notes the belief that there is a need for a sustainable funding settlement for palliative care, given that less than 40% of Marie Curie costs are covered by commissioned income, and further notes the encouragement for as many people as possible to support the Marie Curie Great Daffodil Appeal in March 2024.

12:48  

I rise to mark Marie Curie’s great daffodil appeal, which runs throughout the month of March. It is an opportunity to raise awareness and funds to help Marie Curie continue to carry out its vital work in Scotland.

Marie Curie is Scotland’s largest provider of end-of-life care and palliative care for adults. Last year, the charity supported 8,000 terminally ill people in Scotland to die with dignity, ensuring that they were comfortable, well looked after and able to die in a place of their choosing.

Marie Curie operates in 31 of the 32 local authority areas in Scotland, but service levels vary across the country. Although Glasgow and Edinburgh are served by dedicated Marie Curie hospices, areas outside the central belt largely have hospice care at home.

Marie Curie services take a significant amount of the strain off the national health service, but commissions from health and social care partnerships cover only 40 per cent of their costs. As the demand for palliative care increases in Scotland—10,000 more people will require palliative care by 2040, which is a 20 per cent increase on the current figure—funding for health and social care partnerships is actually being cut. Nine out of 10 Scots will need palliative care at the end of their lives, so every citizen has a stake in it.

Scotland’s increasing population of people who are over the age of 85 is having the biggest bearing on increasing demand for hospice care. Unfortunately, it is estimated that, by 2040, the incidence of dementia as the main cause of death will rise by 185 per cent.

Recruiting and retaining staff in Marie Curie hospices is proving to be difficult. Hospices simply cannot match the agenda for change pay rise that was rightly given to NHS staff, because no additional funding was made available to them. It is therefore critical that, with demand for palliative care rising in the coming years, we have a more sustainable and fairer funding settlement for the hospices so that Marie Curie can continue to be there for people when they need it.

It is no good simply having a negative feedback loop in which people are stuck in acute hospitals, dying in inappropriate conditions, often without dignity, when they could have a hospice bed, but the hospice cannot be staffed because the staff are not there. It is a perverse and cruel situation for people to be in. That is why initiatives such as the great daffodil appeal are so vital to Marie Curie. When people donate to or take part in fundraising efforts, they make a significant contribution to ensuring that comfort and care is available for those who need it at the most critical moment in their lives.

The work of Marie Curie goes beyond palliative and end-of-life care. I pay tribute in particular to the extraordinary volunteers who give up their time to become Marie Curie companions. They are trained to provide support for people who are approaching the end of their life, and to the families of those people. Those volunteers are truly inspiring; they are there for people at the most difficult of times, providing practical and emotional support such as helping around the house, doing the shopping or talking through how people are feeling when they are faced with such a devastating diagnosis and the end of their life.

The dying in the margins research that was conducted by Marie Curie and the University of Glasgow found that one in three working-age people who die do so in poverty. It is clear that deprivation is exacerbated at the end of life, and I feel that that is a particularly cruel injustice to so many Scots. I have been personally affected by the stories that were shared in the dying in the margins exhibition that came to Parliament some months ago. Those stories should infuriate us all, and invigorate, encourage and inspire us to be stronger advocates for our constituents so that they have housing that is fit for purpose and the social and financial support that they need to empower them to make real decisions with real agency about where they choose to end their lives.

Last year, I had the opportunity to visit the Marie Curie hospice at Stobhill in Glasgow. I grew up with that place and it was the local charity that was supported by Turnbull high school in Bishopbriggs, where I was educated. It was particularly interesting to see the results of the huge fundraising effort that took place 14 years ago—it was probably the biggest public fundraising effort that has happened in Glasgow in recent years—to raise £16 million to rebuild the hospice. Half of that money came from Evening Times readers in Glasgow, which, I think, signifies the importance of that hospice to people across the city.

I was particularly struck by a patient from Glasgow’s east end whom I met there, who very sadly passed away just a couple of days after I visited. She had a difficult upbringing. She had a chaotic childhood and had used drugs, and she faced difficult circumstances, but she finally felt that she had got her life back on track and she was in a good place with her two teenage sons. However, she then got what she thought was tonsillitis or a throat infection.

She went along to her general practitioner to seek help and persisted for more than a year with a chronic throat condition, but unfortunately she was just fobbed off and not taken seriously. When she was finally able to get a diagnosis, it was terminal. She was facing the end of her life, and she was only in her late 40s. I believe that, had she been from a more affluent part of the city and not the east end, her concerns would have been taken more seriously, she would have been approached with more agency from day 1, and she would still be alive today. Cases such as hers put the dying in the margins research into stark perspective, certainly for me, and we must do better. That is the essence of social justice. Having a conversation with her in moments of deep frustration and deep sense of grief about the life that she was robbed of will never leave me.

The great daffodil appeal is an opportunity to promote Marie Curie and all the work that it does to improve people’s lives in the most devastating and difficult of circumstances. I hope that as many people as possible will support this year’s appeal.

12:55  

I thank Paul Sweeney for securing this debate, which marks the launch of the 2024 great daffodil appeal.

I am privileged to have a wonderful Marie Curie hospice at Stobhill in my constituency. As convener of the cross-party group on palliative care, I am well aware of the fantastic work that Marie Curie does not only in hospices but through the services that it provides in people’s homes across many local authority areas. Marie Curie’s dedication, care and compassion make a real difference to those who are living with terminal conditions and are often approaching the end of life, and to their families, which is important.

We are also very fortunate in having a dedicated team of fundraisers in Marie Curie. Many volunteers raise much-needed resources for many of the services that it offers. Many of the donations that are received will be from the families and friends of those who are no longer with us, but who benefited greatly from the services of Marie Curie. My heartfelt thanks go to everyone who makes a donation, no matter how large or small.

The warmth and affection towards Marie Curie sit at the heart of the great daffodil appeal. On 7 May, I will host an event with Marie Curie in the garden lobby of the Scottish Parliament that will celebrate the undoubted success of the great daffodil appeal. I hope to see members at that event.

Every year, the great daffodil appeal is important in securing much-needed resources. However, this year, it will have never been so important. The financial pressures that our network of hospices is under are significant. It has been challenging for hospices to match the very welcome pay awards that the Scottish Government has made to Scotland’s NHS and agenda for change workforce. Finding funds to do so has put particular pressure on reserves and yearly running costs, as have other factors, such as wider inflationary pressures and energy costs. Unfortunately, the Scottish Government and Scotland’s integration joint boards have been unable to respond to those pressures in a way that has been able to fully alleviate or adequately mitigate those pressures. I acknowledge the unprecedented pressures on Scotland’s budget, and I anticipate that our hospice network will continue to do a wonderful job in the year ahead, despite those challenges. However, the pressures will not go away, and there needs to be an agreed and sustainable funding model for Marie Curie and the wider hospice network in the years ahead.

I very much hope that the new Scottish palliative care strategy will take account of the need for financial sustainability, and I hope that our new national care service will entrench within it the explicit right to palliative care for the people of Scotland and drive adequate funding to the sector accordingly in a fair, equitable and sustainable way. The minister knows that I am keen to work with the Government on that. We have discussed that previously, and I hope that we can continue those discussions.

I return to the great daffodil appeal. From its inception, the hospice sector has always sought to fundraise for a significant portion of the money that it invests in services. It is up for that challenge, and it expects that to be the case. That will not and should not change, but that is different from adequate support from the public sector for financial sustainability. Both things can live together.

The great daffodil appeal is fundamental to those efforts for Marie Curie. Marie Curie is a vital and valuable partner. With Scotland’s ageing population, by 2040 an additional 10,000 people each year will need palliative and end-of-life support. That will be 60,000 people in total each year at that stage. We need to grow the hospice network, and we need to innovate so that there are new models of delivering palliative care. Both those things are required. As I said in my members’ business debate in December, I know that Marie Curie is up for that challenge because it has done that successfully previously.

When people support this year’s great daffodil appeal, they are not just supporting those who are approaching the end of life and their loved ones today; they are investing in the future of palliative and end-of-life services for tomorrow.

12:59  

I welcome the opportunity to speak in this debate and I congratulate Paul Sweeney on securing it.

Like other members, I have been a great supporter of Marie Curie for many years. Everyone deserves to get the right care and support at the end of life, and Marie Curie tirelessly shows compassion across all parts of Scotland, including in my Mid Scotland and Fife region. The amazing work that it does shows its full commitment.

As the motion notes, the great daffodil appeal is a phenomenal success for the charity. We are all wearing the emblem this afternoon, and Marie Curie is to be commended for the fact that it is recognised by so many individuals and organisations.

Marie Curie is the largest provider of palliative and end-of-life care in Scotland and across the United Kingdom. Last March, I, like many others, supported the Marie Curie fundraising appeal at an event in the Parliament. I met once again the staff and some of the volunteers who give their time and their talents to support and care for people who are living with a terminal illness, and also their families and the carers who support them. I heard—we have heard this today as well—that over 8,000 terminally ill people across Scotland were supported in their homes or in the hospices in 2021-22. Sadly, it looks like the figures will continue to increase. As Paul Sweeney commented, there is a massive increase in the elderly population and in the number of individuals who require care.

In my area, the charity’s community nursing service made over 250 visits in Stirling and Clackmannanshire alone to support people in their homes. Back in December 2019, Marie Curie published a press release highlighting that by 2040, if current trends continue, two thirds of Scots will die at home, in a care home or in a hospice. The research by Marie Curie, the University of Edinburgh and King’s College London also warned that, without radical investment in community health and social care services to ensure that individuals are supported, there will be a continual rise in the number of people who die in hospital. We want to alleviate that. I hope that the minister will mention that when she sums up.

We need to ensure that Marie Curie nurses will be able to support everyone in Scotland who needs them. We have heard today about the difficulties that we face in funding pay awards and the difficulties due to the cost of living, which is affecting each and every one of us. Marie Curie has to raise about £250,000 a week to deliver its incredible work and cover front-line services. The fact that it does so is a major achievement for which it should be commended.

I look forward to hearing from other members and from the minister. It is vital that Marie Curie can achieve what it wants to, ensuring that individuals have the peaceful and pain-free death that we all deserve and supporting those who are affected by bereavement following deaths from cancer.

13:03  

I thank my colleague Paul Sweeney for bringing this important debate to the chamber. I am not surprised that he chose Marie Curie’s great daffodil appeal as the subject of his members’ business debate, because we have discussed many times the excellent work of Marie Curie and other hospices. He has fought with passion—and he spoke with compassion today—to raise the on-going issue of funding and sustainable resourcing of these essential services. As he mentioned, less than 40 per cent of Marie Curie’s costs are covered by commissioned income, and events such as the appeal are so important.

I will be clear: the Parliament is right to encourage as many people as possible to support the Marie Curie great daffodil appeal this year, as in other years. That encouragement should be given in order to promote the good work that the organisation does and offer people the opportunity to make any donations that they can, but it should not allow us, in this place of power, to ignore the need to properly resource those essential palliative care services.

We have spoken in a few members’ business debates on these issues in previous months, so I pay tribute to the work that Carol Mochan is doing to highlight them.

I agree with her about the sustainable funding model, but does she recognise that the hospice sector believes that fundraising for a large part of the resource that it spends is a vital part of what it does? The sector is not seeking to dilute that, but wants sustainable, leveraged funding from the Government for the future needs for which it will have to plan.

I recognise that fundraising is part of the way that the hospice sector promotes its cause and makes sure that people are aware of the sensitive issues surrounding it. I also think that that should not detract from the fact that we should discuss how we make the sector sustainable and how we make sure that funding is available, particularly as the need for such resources increases. The member and another colleague made points about that. In this place of power, we have to take responsibility for that.

I have said this before, but it is the only way I know how to say it in order to express my feelings: everyone deserves as pain free and as peaceful a death as possible, surrounded by those who love them, in a place that comforts them and in which the choice is theirs. We can all agree that, at some point, we will be touched by the death of a loved one. Should that loved one need end-of-life care over a period of time—palliative care—we would all wish it to be provided in the best way possible, by trained and sensitive care staff who have the knowledge, time and training that are needed to provide support for the physical deterioration as well as the emotional needs of our loved ones and their wider family.

If the chamber will bear with me, I will take the opportunity to mention a meeting that Paul Sweeney and I had with Brain Tumour Research. Among the issues that it raised with us was the impact of a diagnosis on a person’s family and their wider friend network. The diagnosis is often given to young people, including young women who have their lives ahead of them and have families. I thank Theo and Thomas for coming to the Parliament and for talking to us about the important issue of how we support people emotionally as well as the wider way in which we support research into very serious conditions that can cause end of life. It is heartening that Marie Curie is there. As we have said many times in the chamber, we support the hospice care-at-home teams and its two hospices.

I recognise that I am running out of time. I wanted to mention inequalities, but they have already been touched on. I simply cannot accept that someone who is dying cannot get the care and comfort that they deserve. In a time of need such as the end of life, surely we must all be looking to find solutions to provide all the care and comfort that are necessary. I know that the daffodil appeal helps to achieve that aim.

13:08  

I, too, thank Paul Sweeney for securing the time in the chamber for this important annual debate. The great daffodil appeal, which is the most prominent awareness-raising appeal for Marie Curie, runs throughout March.

I take the opportunity, as others have, to thank the staff and volunteers of Marie Curie, who deliver services in 31 out of 32 local authority areas, including its two hospices in Edinburgh and Glasgow, and the at-home services for those who choose to die at home. Volunteers provide support through its companion service, tackling isolation and loneliness. Companions also support families after someone has died. That friendly, familiar support after the death of a loved one is an invaluable offering—I am sure it is valued by many families around the country.

Marie Curie also provides support for planning for end of life. I have previously said in other debates in the chamber that, as a country, we need to do more to support and encourage conversations about what a good death looks like for individuals. As the motion notes, for many people those will be about supporting their desire to die at home.

The way in which palliative care is delivered is already having to adapt to the demand for such support as well as to our ageing population. However, the motion notes that such demand will increase significantly by 2040, in that

“60,000 people will die with palliative care needs, which is 10,000 more per year than currently”.

Further pressure will undoubtedly come from the more complex nature of the health conditions that patients have as a result of their living longer. It is difficult, at the current point, to predict those for the future. The motion suggests that they will increase by 82 per cent, but that figure will undoubtedly vary across local authorities and will depend on socioeconomic factors. That should be kept under review, and services should be supported to adapt to deliver support to people who are in the greatest need.

The diversity of palliative care services and the range of conditions that they can support are vast, but I am not sure that the public, especially people who have never had contact with such services, have an understanding of that diversity. For example, people with conditions such as heart failure, which can be managed for long periods of time, can receive palliative care when it is needed. I believe that we should amplify the message about diversity in the sector wherever we can.

As I am the co-convener of the Parliament’s cross-party group on carers, it would be remiss of me not to mention the support that carers need when a loved one is receiving palliative care. Carers take on financial, emotional and physical burdens without a second thought, to support the people they love. As do many other organisations, Marie Curie provides valuable support to families. However, we must ensure that those families are meaningfully involved in end-of-life planning, they understand what will happen and what support is available and, crucially, they are allowed to express how they want to be supported along with their loved ones.

In the coming years more will need to be done to support the provision of palliative care, to ensure that everyone can receive the fantastic level of care that many members across the chamber have articulated during the debate. I thank Marie Curie’s staff, its volunteers and everyone who will donate to the great daffodil appeal this year.

13:12  

As other members have done, I pay tribute to all Marie Curie nurses, staff and volunteers for their herculean efforts on behalf of dying people and their families. I welcome those of them who are in the public gallery to listen to the debate. I thank Paul Sweeney for allowing Parliament to hold the debate, and I acknowledge his strong personal commitment to the issues that we are discussing.

No one who read Marie Curie’s briefing for the debate can have escaped its stark warning about projected future demand for its services. That is a product of the fact that our population is ageing, but Paul Sweeney rightly suggested that it simply means that we are all invested in the issue and have a stake in it.

Another point that clearly emerged for me was that the difficulty is not just about demand and numbers, but about complexity. Many people are living longer with comorbidities that make such treatment more complex. Gillian Mackay was right to talk about the diversity that is required in the sector’s provision: covers a broad sweep including in-patient hospice care and hospice-at-home care. Paul Sweeney, too, was right to draw attention to the companion service, which does so much to address the needs not only of individuals but of their families, and to tackle the problem of isolation.

We are seeing recognition of the increasing strain that will be placed on Marie Curie’s funding. Bob Doris was absolutely right to say that that will continue to involve a mixed model in which fundraising effort is an integral and important part of Marie Curie’s work. It does not want to roll back from that, but the requirement to provide security of funding, given the likely demand for its services, will be essential.

I note that, this morning, the House of Commons Health and Social Care Committee published a report on end-of-life choices and assisted dying, which rightly draws attention to many issues that Marie Curie addresses, including patchiness of funding and access to services. I drew encouragement from the committee’s finding that there is no evidence that, in jurisdictions where there are assisted dying laws, there is diversion from palliative care services. Indeed, in many instances, there is reinforcement of funding that allows greater access to, and improvement of, those services.

I will take a moment to acknowledge Marie Curie’s engagement with me in the context of my member’s bill on assisted dying, which I hope to introduce to Parliament shortly.

Will the member take an intervention?

I am afraid that I do not have time.

I look forward to continuing to engage with Marie Curie once the bill is introduced.

For now, I again pay tribute to the work that all the staff, volunteers and nurses do, and to the contribution that is made by the wider public through the great daffodil appeal, which I am sure will enjoy overwhelming public support again this year, in order—as Carol Mochan said—to provide the care and comfort that our dying people need and, frankly, deserve.

13:15  

I thank Paul Sweeney for bringing the motion to the chamber today for debate.

It is always a pleasure and a great privilege to speak about Marie Curie and the invaluable service that it provides. Today is no exception. The Marie Curie great daffodil appeal is an initiative that embodies compassion, resilience and community spirit. The appeal runs throughout March each year and champions the cause of providing care and emotional support to people across Scotland who are at the end of life.

The great daffodil appeal is not just a fundraising campaign—it is a symbol of unity and support. By simply donating and wearing a daffodil pin, thousands of people across Scotland demonstrate their solidarity with people who are affected by terminal illness. Volunteers, who embody the spirit of community support that Scotland is renowned for, ensure through their invaluable contributions that Marie Curie continues to offer its crucial services to people who are in need.

In my constituency of Kirkcaldy, in Fife, Marie Curie has been a saving grace for hundreds of families over the years. In 2022-23, Marie Curie made thousands of visits in Fife to support terminally ill patients. It visited more than 500 patients and NHS Fife is incredibly lucky to have 33 Marie Curie volunteers who help to deliver essential services to my constituents. I hear at first hand from constituents about the impact that Marie Curie has made on Kirkcaldy.

Marie Curie nurses and volunteers have been a comforting presence during difficult times for many families across Fife. They have offered not just medical care, but emotional support, understanding and a listening ear to people who are in their most vulnerable moments.

I am constantly in awe of my community and the impressive fundraising efforts that are held annually across the area to support the charity. Our community groups raise awareness every year to support people who are living with terminal illness, and I pay tribute to them and recognise the crucial role that they play in organising fundraising events and activities, and in helping to raise awareness.

As many people will be aware, NHS Fife launched a fully integrated hospice-at-home service, which is run by Marie Curie and NHS Fife. It has reduced the hospital costs of end-of-life care. With Fife having a larger older population and some very rural areas, avoiding hospital admissions whenever possible is always an important aim. The response to the hospice-at-home service in Fife has been incredible. People who have been supported by the service experienced 40 per cent fewer hospital admissions and 68 per cent fewer visits to accident and emergency departments, and were two and a half times as likely to be in the comfort of their home to die.

However, the cost of delivering that crucial and invaluable work is increasing year on year. Marie Curie research projects that, by 2040, propelled by our ageing population, up to 10,000 more people will be dying with palliative care needs. That represents a 20 per cent increase in demand and 90 per cent of all deaths in Scotland. The complexities of multimorbidities, a significant rise in dementia-related deaths and the shift towards community settings for end-of-life care all underscore the urgent need for support and innovative solutions.

Our palliative care services must be fully supported in order that they can respond to the rising demand that stems from changing demographics. That is one of the main reasons why the great daffodil appeal presents a crucial opportunity to support one of Scotland’s greatest community assets. Support that is garnered from the great daffodil appeal goes towards several of Marie Curie’s important programmes: hospice care at home, information and support services, in-person hospice, and companion and home support are just a few of the extraordinary initiatives that Marie Curie provides across Scotland.

In closing, I urge that we all support the great daffodil appeal in any way that we can—be it through volunteering, fundraising or simply wearing a daffodil pin. Let us unite in our efforts to provide hope, care and support for all the people who are in their final moments, and their families. Together, we can make a difference in the lives of many by demonstrating the true spirit of companionship and community that defines Scotland.

13:19  

I thank Paul Sweeney for securing the debate. I commend the work of Marie Curie and wish it well with the daffodil appeal. As well as commending its care services, through which it made 1,532 visits across the NHS Highland area last year, I commend its work on raising awareness of end-of-life care.

Palliative care is not help to die; it is help to live. When days are few, they are precious, and we need to savour each and every one of them. That should not depend on a person’s wealth or where they live. The Marie Curie and University of Glasgow report “Dying in the Margins; The Cost of Dying” shines a light on health inequalities, which occur right through to end-of-life care. There is a 24-year difference between the healthy life expectancy of people who live in our most-deprived communities and that of those who live in our least-deprived communities, which is why I am proposing a “right to food” bill. Given that diet is so important to health and life expectancy, I hope that that would make a difference.

Not only are less-wealthy people more likely to die younger, but they are also less likely to have the facilities that they need to make them comfortable. Even heat is unattainable: 94 per cent of people are concerned about terminally ill family members and friends being unable to pay for energy, which is simply not right, at the end of life. People who live in rural areas are far less likely to be able to access palliative care, because there are very few health professionals, and people live some distance from services. It is often down to the dedication and good will of a few health professionals that people are cared for at the end of life and, indeed, that they can choose to die at home. I pay tribute to those professionals.

Paul Sweeney highlighted the difficulties that Marie Curie faces with increasing demand, increasing costs and decreasing funding. The organisation is asking for funding to be put on a formal footing in order to cut down the time that is spent on negotiations for funding of care. It also asks that the Scottish child payment be extended to terminally ill people who have dependent children. It would be targeted at those who are in most need, given the lower life expectancy of people who live in the most-deprived areas.

For too long, palliative care has been largely ignored, even though most of us will need it. People need to be able to choose where to die, and they have a right to die at home. It is important for a person whose life is drawing to a close that they have good-quality palliative care, but it is also really important that their loved ones have support. Good-quality palliative care in a place of our choosing should be available at the end of life, as should support for family and friends. We all need the right to palliative care.

13:23  

I welcome the debate and thank Paul Sweeney for securing it. The great daffodil appeal is one of the most iconic and recognised fundraising drives of the year. People all over the country wear their yellow daffodil badges, as we do today, with a sense of pride that they are supporting Marie Curie to deliver its world-class palliative care services in our communities and its hospices. I thank all the nurses, staff and volunteers who are part of Marie Curie.

One area of interest in the 2024 appeal is end-of-life poverty and improving the financial package that is available for palliative care. Rhoda Grant has just laid out the specific heating and nutrition challenges that some people face at the end of their life, especially in rural areas.

As a registered nurse and a member of the Parliament’s Health, Social Care and Sport Committee, I have an interest in our social care sector and feel passionately about ensuring that we equip the sector and, indeed, our population for years to come. Across Scotland and internationally, people are ageing better and living longer lives. That is welcome, but it presents challenges, because with age comes a greater risk of health complications and a greater need for social care support and services.

The health committee has carried out several inquiries relating to social care in Scotland, and the conclusions have always had similar themes. One of the main themes is that, as a society, we must be smarter and better prepared to deal with our ageing population, as Marie Curie suggests in its briefing for the debate.

The evidence shows that there must be an onus on healthcare professionals to have realistic conversations with people about their retirement. Future care must best support people staying at home, if that is their choice, and it is absolutely paramount that the care is suited to their needs. That is why the National Care Service (Scotland) Bill is so important.

Marie Curie is at the forefront of pioneering research in Scotland. Indeed, one of its most recent publications, which was produced jointly with the University of Edinburgh, suggests that, by 2040, two thirds of Scots—66 per cent of the population—will die at home, in a care home or in a hospice. Allowing more people to have the opportunity to die in a place that they choose is essential if we are to meet future care needs and reduce the demands on our acute services.

However, as Marie Curie points out, to achieve that, palliative care must have a fair funding settlement. One of the ways that Marie Curie suggests that can be achieved is through the Scottish Government working to a minimum target of 50 per cent statutory funding for independent hospice care providers, including those that provide hospice care at home. Given that, across Dumfries and Galloway, 4,359 visits were made to 542 people and patients by the region’s 31 dedicated Marie Curie nurses, I would welcome the minister’s comments on that ask by Marie Curie. Support from those dedicated nurses allowed 72.5 per cent of those with palliative and end-of-life care needs to die in a place of their choosing. However, again, funding is crucial to enable that support to grow to meet future demand.

It is welcome that, across South Scotland, Marie Curie has seven shops that are raising funds and more than 896 dedicated volunteers. There are shops in Stranraer, Newton Stewart and Dumfries, and there is a supporters group in Lockerbie. I will visit the Dumfries shop with Marie Curie leadership a week on Monday, and I look forward to continuing to support its work.

I again welcome the debate, and I congratulate and thank Marie Curie for the fantastic work that it does day in, day out to support those who require end-of-life and palliative care and their friends and family.

13:27  

I thank Paul Sweeney for lodging the motion for this debate and everyone in the chamber for their contributions. I also welcome the Marie Curie team who have joined us in the gallery. I am sure that they will watch the beginning of the debate on the Scottish Parliament website.

The First Minister sat beside me to listen to Paul Sweeney’s opening speech and said to me that this is a matter that is close to his heart. It is probably fair to say that the work that Marie Curie does is close to the hearts of everyone in the chamber.

Emma Harper was absolutely correct to talk about the iconic daffodil. When I was home on Islay last weekend, some daffodils had come out at the back of my house, and the first thing that I thought of was Marie Curie, so I say to the team that the campaign gets into the public consciousness very well.

I am sure that members will remember that, in December, we stood together in the chamber to celebrate Marie Curie’s 75th anniversary. It has been an amazing 75 years. Marie Curie staff and volunteers have pioneered palliative and end-of-life care, and the organisation has become a significant health and social care partner that provides invaluable support to people and their families at the most challenging points in their life, as well as supporting other health and social care services and teams that deliver palliative and end-of-life care. It is that friendly familiar support that Gillian Mackay noted.

Many colleagues across the chamber have reflected on how much Marie Curie means to them personally. That highlights the broad scope and reach of Marie Curie’s work and why it is so important. Alexander Stewart and David Torrance talked about the sense of companionship and community that is reflected in their communities, as well as Marie Curie’s constant work to raise funds.

It would be remiss of me not to recognise the work of the Marie Curie fundraising teams across my Argyll and Bute constituency. I thank them for their tireless fundraising work.

The work that Marie Curie and its volunteers do, day in, day out, is often done under extremely trying circumstances. It is, as others have reflected, really important; indeed, it is no mean feat, which is why I thank all Marie Curie staff and volunteers across Scotland for their unending hard work and for taking the time to be here today. As Liam McArthur said, we all have a stake in this.

In preparing for the debate, I was drawn back to the Marie Curie quote that I shared during the 75th anniversary debate in December:

“Nothing in life is to be feared, it is only to be understood. Now is the time to understand more, so that we may fear less.”

I feel that that is particularly poignant today, given the subjects that have been raised in Paul Sweeney’s motion and which we have discussed.

During the debate in December, I talked about the round-table meeting that I had convened earlier that month with health and social care partnership chief officers and independent hospices, and I noted that those who had participated had welcomed the frank and open dialogue. Since then, I have visited St Andrew’s hospice in North Lanarkshire to hear about the care that it provides and the challenges that it faces with regard to inequalities. I know that my officials are continuing to meet hospices and chief officers to discuss the draft guidance framework that will support more consistent local planning and commissioning of independent hospice care, and I hope that we can resolve some of the challenges through working in partnership, as Marie Curie has called for.

Paul Sweeney’s motion highlights the increased need for and complexity of palliative care projected by Marie Curie research up to 2040, as well as the financial challenges faced by those nearing the end of life. Last year, I, like many colleagues in the chamber, visited the “Cost of Dying” photographic exhibition, which illustrated the impact of socioeconomic circumstances on end-of-life experiences. Like Paul Sweeney, I was very much touched by the poignant images that were displayed alongside the participants’ harrowing stories, and I was inspired by the courage and strength of the individuals who shared their stories at such a difficult time in their lives.

We recognise that too many people are living in poverty, which is why we are committed to breaking the cycle of poverty in Scotland. We are providing more support for social justice than ever before, with our spending on social security benefits forecast to increase by nearly £1 billion in 2024-25.

I thank the minister for giving such a constructive response to the debate. Might she consider improving the obligations on landlords in the forthcoming housing legislation to ensure that they more readily assist people who face a terminal illness by adapting their homes so that they can stay there instead of ending up in hospital, as they otherwise would?

I thank Paul Sweeney for that intervention and recognise exactly the story from the “Cost of Dying” exhibition that he has referred to. I will continue to have discussions with the Minister for Housing on the matter and am happy to raise with him the issue that the member has just raised with me.

I should add that we continue to support free welfare, debt and income maximisation advice services with funding of more than £12.3 million.

Being diagnosed with a terminal illness is undoubtedly one of the most challenging things that a person can go through. No terminally ill person, or their family, should have to worry about their finances at such a difficult time, so the Government is ensuring that adult disability benefit applications from people with a terminal illness are fast-tracked to provide them with the support that they are entitled to as quickly as possible.

Will the minister take an intervention?

I would like to continue for the moment, but I will take it once I have finished this section of my response, if that is okay.

We also ensure that those who are terminally ill automatically receive the highest rates of assistance that they are entitled to, with no award reviews. Moreover, they are eligible for that support straight away, with no qualifying period.

I welcomed the debate on the dying in the margins project and had a really helpful follow-up meeting with Marie Curie and the University of Glasgow, in which I committed to bringing the issues raised to a future ministerial oversight group on poverty. It is another area where we need to work in partnership to understand the impact of poverty at such a difficult time in people’s lives.

I echo Paul Sweeney’s comments about the minister’s constructive response to the debate. As a lot of the issues that she has touched on will undoubtedly be in the updated palliative care and end-of-life care action plan, can she give us an update on when that revised or updated plan might be ready?

That is perfect timing, as I was just about to say that, through the new palliative care strategy that we are currently developing, we are prioritising work on future care planning and are looking at what information is available, the systems that are in place and what can be done to promote the use of such planning across Scotland. The Scottish Government is proud to be working with Marie Curie and the hospice sector across Scotland to build a new palliative and end-of-life care strategy, which we anticipate will be published for consultation in the spring. I was also thinking that, given the collaborative approach being taken by members across the chamber, it might be helpful if I arrange a briefing for MSPs when the strategy is launched.

We have all agreed a shared aim—that everyone in Scotland receives well-co-ordinated, timely and high-quality palliative care, with death and bereavement support based on people’s needs and preferences, including support for families and carers. We also have a shared principle—we are committed to equitable and timely access to general palliative care and specialist palliative care services as needed by each person of any age living with any illness in all places. We will, as Carol Mochan said, work together to find solutions.

Once again, I thank Marie Curie staff and volunteers for their tireless work, and I look forward to working with them closely on our shared aims over the months ahead.

Thank you, minister. I take this opportunity to thank members for their co-operation in recognising in their contributions the time constraints under which we are operating.

13:36 Meeting suspended.  

14:00 On resuming—