Meeting of the Parliament

Meeting date: Thursday, November 16, 2023

Official Report 1141KB pdf

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Dying in the Margins Project

The next item of business is a members’ business debate on motion S6M-10827, in the name of Paul O’Kane, on dying in the margins. The debate will be concluded without any question being put. I advise members that we are short of time today and a number of members are seeking to speak in the debate. I hope that I can rely on members to co-operate, given that we will be sitting again at 2 pm. We must allow the parliamentary staff sufficient time to do their job in clearing the chamber, so I ask all members to stick to their time, which is seven minutes for the member opening the debate, four minutes for each member in the open debate and seven minutes for the minister.

I ask members who wish to speak in the debate to please press their request-to-speak button.

Motion debated,

That the Parliament welcomes the University of Glasgow and Marie Curie research project, Dying in the Margins, as well as The Cost of Dying photography exhibition taken from the project; understands that the project ran from 2019 to 2023, and was funded by the Economic and Social Research Council (ESRC) and UK Research and Innovation (UKRI); further understands that the project shed light on what it sees as the profound effect that people’s socio-economic circumstances can have on their end of life experience; understands that, as part of the project, participants who were living with a terminal illness were photographed by Margaret Mitchell to create images conveying aspects of their end of life experience, and were given a camera to document their end of life experience themselves; considers that the project highlights the important challenges that are faced by people with a terminal illness who are living with poverty, and what it sees as structural disadvantage, including, but not limited to, unsuitable housing, energy costs and lack of income support; commends the bravery of the project’s participants, their families and carers, who documented their lives at, it considers, the most challenging time, to inform the public conversation around improving the end of life care for those living with poverty, including those in the West Scotland region, and what it sees as structural disadvantage; recognises the expertise of those who worked on the project, including University of Glasgow researchers, Dr Naomi Richards and Dr Sam Quinn, University of Auckland researcher, Professor Merryn Gott, and Marie Curie Head of Research and Innovation, Dr Emma Carduff; notes that the photography exhibition will be displayed in the Scottish Parliament on the week commencing 13 November 2023, and further notes the encouragement for MSPs to visit it and consider how they can tackle some of the issues that it raises.

12:52  

It is my pleasure to have secured today’s debate on the dying in the margins report, which was produced by the University of Glasgow and Marie Curie. I welcome to the Parliament family members and friends of some of the study participants who are with us in the gallery today. I am very pleased that they have all been able to join us to hear us discuss this important piece of work and the stories of their loved ones, which were shared so vividly in the exhibition and in the report.

That is a really important place to start. A dear friend said to me recently that dying is existential. It comes to us all, and the old adage is that there is nothing more certain in life. Despite all that, it touches the life of each person who is caring for a loved one with a terminal illness, and who is left behind, in different ways. We should reflect that we perhaps have only one mother, one father, one child, one brother, one sister or one dear friend, and their death will impact us in different ways. It can be exacerbated by different factors, with poverty clearly being a huge factor in the way that people experience the end of their life.

I thank all the members who signed my motion, and I look forward to hearing all the contributions in the debate. I put on record my thanks to members who have taken additional steps to highlight the work of the research and the exhibition. I thank Evelyn Tweed for sponsoring the exhibition, which is just outside the chamber. I hope that members have had a chance to see it and to discuss the report with colleagues from Marie Curie and the university.

The existence of poverty and destitution in Scotland brings shame on us all. The research conducted by the University of Glasgow and Marie Curie lays bare that poverty and destitution exacerbate the most distressing and difficult periods in the lives of an individual and their family. At a point when communities and the institutions of our society should be wrapping their arms around people to support them, they are too often let down. That we have allowed a system that means that people in their end of life are worried about whether they can heat their homes instead of spending their final months around family and friends is both unthinkable and unacceptable.

That is why I welcome what the research project has put together, because it really rips the cover off the issue. So often, population-level data can blur the real picture of what is happening in people’s lives. This project cannot be accused of that, because of the strong element of case study, because of the photographs and because it relates the experience of people’s lives. It is clear that it puts into high definition for all of us—quite literally—the linkage between poverty and terminal illness.

I thank the project team for that work and for the unique method of research. I also thank the University of Glasgow researchers Dr Naomi Richards and Dr Sam Quinn; the University of Auckland researcher Professor Merryn Gott; and Marie Curie head of research and innovation, Dr Emma Carduff. I additionally thank Margaret Mitchell, who photographed the participants and created the images that have formed the basis of the study. All their hard work, their expertise and, above all, their care and compassion in presenting the issue have allowed us to shine a bright light on this very important area.

It would be wrong not to recognise and thank also those who were at the heart of the research—the participants. I cannot begin to imagine what it must be like to be diagnosed with a terminal illness and to have that put upon you when you are already experiencing huge challenge and difficulty in your life. To follow that up by inviting people into that moment to document it, photograph it, study it and publish it is an incredibly brave decision and one that could not have been easy for many. I thank those who allowed their stories to be told. For those who are no longer with us, we hold them in dear memory today.

I was fortunate to visit Marie Curie’s Glasgow hospice over the summer. I got the opportunity to meet a number of the people who were being supported and cared for there. It helped me to reflect on what I had seen in the exhibition, and I met many people who were perhaps in similar circumstances. I met one man who reminded me a lot of Max, who was one of the participants in the study. Max’s story was typical of many and as informative as any other. He was an army veteran with experience of homelessness and trauma. He desperately wanted to remain at home, with the freedom that we all crave, but that was very difficult, as his home was a flat up four flights of stairs and lacking in other support provisions. Any time his cancer symptoms got too difficult to manage, he was admitted to the hospice. That was even more difficult for him, because he felt that he had been taken away from his dog, Lily, whom he dearly loved, and out of his own community, where he felt comfortable and secure.

Max’s story leads me nicely on to the asks and calls for action that the research makes. Max would have benefited greatly from the third ask in the report, which is to ensure that terminally ill people are offered timely and affordable adaptations to their property. We know from figures available from Public Health Scotland that, from 2021 to 2022, people who were dying spent around 90 per cent of the last six months of their life at home. Those settings are often inadequate, and whether those people can access adaptations can be a postcode lottery. People deserve the dignity of dying in their own home if that is what they choose, and it is incumbent on all of us to work to make that an option for them.

I am conscious of the time allotted, but there are other substantial and important recommendations in the report that I know colleagues will want to reflect on in their contributions, not least recommendations relating to the cost of energy and the cost of being able to heat a home and to have life-sustaining equipment, if that is required, and the money that is available to support people and their carers.

I hope that, when the minister closes, she will reflect on some of those asks directly and give us a sense of what the Government will do to push the agenda forward. I hope that she will meet me, Marie Curie and the researchers to discuss those issues in more detail.

As I said at the beginning, death and dying come to us all, but they do not impact us equally, because our society remains too unequal. In the most difficult moments of life—at the end of our lives—we must afford everyone decency, comfort and respect. I think that that is the very minimum that we would expect for ourselves and for everyone in our society. I hope that, through this debate and the research project, we can reflect on that going forward from here and make a real difference.

12:59  

Dying is not something that most of us want to talk about, but we must. As policy makers, we have a responsibility to all our citizens from cradle to grave. The cradle bit is easy to talk about—doing all that we can to make sure that every child who is born here arrives in safety, comfort and love. It is not everything, but the box of essentials to help parents to keep each new Scottish baby warm and safe—the baby box—is a good reflection of that wish for an equal start.

We are perhaps not as good at talking about the end of life—perhaps it does not have the same feel-good factor—but we cannot ignore inequity at the end of life. We must have our eyes open, which dying in the margins, the joint study and exhibition that has been undertaken by the University of Glasgow and Marie Curie, helps us to do very well. I am very grateful to them for their work, and I am in awe of the research participants. I welcome to the gallery everyone who is involved.

This first-of-its-kind study, examining barriers to and experiences of dying at home for people who are living in poverty, shares the direct experience of participants through Margaret Mitchell’s images and the participants’ words. It is hugely powerful. I am grateful to Evelyn Tweed for sponsoring the exhibition in the Parliament.

I also thank Paul O’Kane for securing cross-party support and bringing this important topic to the chamber, giving us all the opportunity to contribute to this important debate. His speech was very thoughtful and a good start to the debate. Members’ business debates can be quite small affairs, particularly after First Minister’s question time, but I want everyone, particularly those in the gallery, to know that a debate can be the start of something and not just an event in itself.

In opening the debate, Paul O’Kane spoke about Max. For me, it was Marie’s story that struck me, perhaps because she was the same age as I was when I had a serious illness, and I reflect on the quite different experience that I had. Marie specifically spoke about the cost of taxis to get to her treatment. I was fortunate to have a family member move in with me and take on the specific task of running me to hospital, which made treatment a lot easier. In my area, Ayrshire, we have an excellent charity called Irvine & Troon Cancer Care, which provides that service for people who need it. It reflects the—I do not like the term—postcode lottery and the different experiences that folk have. We should not have to rely on location-specific charities to ensure that patients can fully take part in their treatment. It would be interesting to hear the Government’s reflection on that.

I support all the asks that are set out in the Marie Curie briefing. As well as actions for the United Kingdom and Scottish Governments in regard to finance, there are probably policy things that can be done more promptly. Paul O’Kane spoke about aids and adaptations, and I consider that action could be taken on those now. A constituent came to me for assistance when she had been injured falling down the stairs. She had had the aid and adaptation done in her bathroom but not yet on the stairwell, which made recovery quite challenging. We can all imagine how bad that would be.

We have a short debate time, and I know that we want to hear from every member who wants to speak, so I will just say that I will commit to working with others on the topic. I will certainly go to my local authority and health and social care partnership to see whether there are policy changes that can happen promptly to make people’s lives a bit better.

I remind all members who seek to speak in the debate to check that they have pressed their request-to-speak button. If they would do so, that would be helpful.

13:04  

I thank Paul O’Kane for securing the debate. I draw members’ attention to my entry in the register of members’ interests. I am a practising national health service general practitioner, and I directly treat people with terminal illness.

Only two things are certain in life: death and taxes. Although there is often no holding us back from talking about His Majesty’s Revenue and Customs, most of us are not very good at discussing death. Have we told our kids our wishes? Do we know our parents’ wishes? Do we even use the words “death” and “dying” instead of euphemisms?

Death is part of life and we all want people to have a dignified death, with the space to get their affairs in order, say their goodbyes and die peacefully and free from pain. Sadly, not everyone in Scotland is at peace when they die. For those in our communities who are living with a terminal illness and are at their most vulnerable, the financial impact of their prognosis can drain a family’s savings, greatly increasing the risk for many of falling below the poverty line. For people with little or no means, or for those who have lost their job because they are sick, terminal illness is not an equaliser.

The risk of poverty is particularly pronounced for women, Scots from minority ethnic communities and parents with young children. Some even incur debts that will be passed on to their loved ones after they die. According to research with Scots in the last year of their lives, which was carried out by Marie Curie in 2019, 26 per cent died in poverty—that is 2,800 working-age Scots. The charity Crisis tells us that, in 2021, 250 people in Scotland died while homeless. Statistics such as those are important because they provide a sense of scale, but behind every percentage point there are people, families and friends.

“The Cost of Dying” exhibition on display here in Parliament shows lived experiences with poignant and often worrying case studies of those who are trying to make ends meet so they can live the remainder of their lives in dignity. I congratulate the University of Glasgow and Marie Curie on delivering the impactful dying in the margins project, which illustrates the profound effect that socioeconomic circumstances can have on end-of-life experience. In Parliament today, we welcome friends and family who participated in that project: Max’s friend Derek, Stacey’s husband Joost and Linda’s daughter Nicola among others.

The question for us here is how to respond in concrete terms to that study. This Parliament can act in areas of devolved policy, and Marie Curie provides a list of suggestions that are well worth consideration, which include financial support for childcare for all terminally ill Scots, so that families can make the most of the time that they have left together; improved financial support for carers, so that they can focus on looking after their loved ones and making the most of the time that they have left together, without worrying about their finances; and ensuring that terminally ill people are offered timely and affordable adaptations to their property so that they can live the rest of their lives at home, if they wish. Local authorities can review eligibility for council tax support and for discretionary housing support.

As parliamentarians, we must always strive to do better. Having choice, control and the comfort of a dignified death is crucial for the terminally ill, who have already been robbed of so much by their illness. We can do more to help our fellow Scots to make memories with their loved ones and to live as well as they can, for as long as they are able to.

13:08  

I am grateful to Paul O’Kane for bringing this debate to the chamber and I pay tribute to Marie Curie, the University of Glasgow and everyone who took part in their dying in the margins project. The research, and the associated photography exhibition “The Cost of Dying”, movingly highlight the experience of living in poverty with a terminal illness.

There is a strong link between premature death and poverty, and I could say much about the consequences of United Kingdom Government austerity on public health and about the role of the economy in preventing excess mortality. However, for those with a terminal illness, we must focus on the here and now and ensure that they have the support that they need to get the best possible quality of life.

Organisations across the country, including Marie Curie, offer vital support to people with a terminal diagnosis and to their loved ones. One key issue is the need to tackle the double burden of income loss and the increased expenditure caused by a terminal illness. Marie Curie found that two thirds of people with a terminal illness rely on benefits, so it is vital that we ensure sufficient support for people who are in that situation, and for their carers. I would encourage people to contact their local money advice service or MSP to ensure that they are getting everything that they are entitled to, including through Social Security Scotland, which has a fast-track application process for people with a terminal illness, with the aim being to start payments within seven working days.

Research shows that most people would rather die at home. However, for many people with a terminal illness, that is not an easy choice. As the dying in the margins work notes, part of the issue—especially nowadays—is to do with the cost of energy. This week, the Scottish Government’s energy minister, Gillian Martin, wrote to the UK Government on the need for a new social tariff mechanism, to be funded from energy windfall taxes, which would support the people who need it most.

Too many people are struggling to meet sky-high energy bills. Those bills are pushing more people into fuel poverty, and the UK Government must do more. For someone with an illness or disability, there are additional challenges. As Marie Curie points out, people with a terminal illness often start to spend more time at home; they also feel colder because of their symptoms, which means that they have a greater need to heat their home. In fact, research shows that, on average, a person’s energy bill will almost double following a diagnosis of motor neurone disease.

Therefore, I hope that the UK Government will listen to the calls for a social tariff to help the people who most need help with energy bills, and that that will be announced soon.

I commend all the people who took part in the dying in the margins research. I was certainly moved by the exhibition that was held in Glasgow, which is on display in Parliament this week. Sadly, most of those people are no longer with us, but I hope that their actions will help us to ensure that we deliver the best possible support for people to prevent more of our citizens from dying in the margins.

13:12  

I thank my party colleague Paul O’Kane for bringing this very much overlooked issue to the chamber.

I am so glad that I had the opportunity to view the dying in the margins exhibition at the Mitchell library in Glasgow earlier this year. Like others, I found it incredibly moving. Although it is, in many ways, a heartbreaking experience, it is necessary for us to be confronted by those images of people dying in poverty. I hope that all MSPs and staff in Holyrood have had the opportunity to see the main exhibition, or even the smaller exhibition that has been mentioned, and have been able to read the report.

The stories that are highlighted by the exhibits are so often left untold, and the individuals concerned naturally felt that they were not being listened to when the last months of their life were upon them. Such an exhibition provides an outlet for people in that position and shines a light on the warmth as well as the sorrow of the daily lives of people who are living with terminal illness.

As with so many things that we experience across the course of our lives, the process of death is influenced by the poverty and inequality that are experienced by so many. They are the root of the injustice that permeates our society, and for many, that injustice can last from the cradle to the grave.

I simply cannot accept that, which is what drove me to speak in today’s debate. We must do more to stop so many having so little while the few have so much. The rich can often afford to stay at home and receive daily care directly in the place where they have lived and prospered, but for people who have suffered through a life of struggling to make ends meet, it is often the case that no such options exist, and their life ends as it proceeded, with a sense of powerlessness.

I find that to be the final injustice, and one that we should do everything to limit. Everyone deserves to have as pain-free and peaceful a death as possible, surrounded by the people who love them, in a place that comforts them and where the choice—rather than being dictated by what can be afforded—is theirs. I am thankful to Marie Curie for all the dedicated support that it provides to people, but the cost of dying often takes over. The exhibition’s use of the images enhances the words and what we have said in this debate.

I, too, was touched by some of the experiences of people in the exhibition, including Deep and Max. When I saw the image of Max and read the words, I thought, “Good on him that he did what he wanted to do.” We should be supporting that. If our economy did not simply forget about people such as Max, that would not be necessary. However, for many of those in power, it is much more convenient simply to pay no heed to the poverty that blights our society. They forget that it could happen to any of us, and we would then wish for compassion and fairness. Let me be clear: my belief is that we need not have an economy that works only for the rich. We could, rather, have one that ensures that everyone in society has the means to live and die in dignity.

I am conscious of time. I want to make sure that we all look to the conclusions of the report and, as other members have said, that we all work to make sure that we get these things in place.

13:16  

I, too, congratulate Paul O’Kane on securing this debate. The subject has affected many of us deeply. I am not often distracted during First Minister’s question time, but that certainly happened to me today when I was thinking about this debate.

After visiting “The Cost of Dying” photography exhibition, I felt compelled to speak in this debate. Colleagues have already raised serious issues around energy bills, social security support, timely access to affordable housing, and adaptations. I trust that the minister will address those when she speaks.

Seeing the dying in the margins project’s exhibition was a deeply moving experience. It provided a profound visual insight into the harsh realities that people who are living in poverty face at the end of their lives. I am sure that I am not the only one who fought back tears and felt quite overwhelmed by the struggles that the participants faced, and I was also humbled by the resilience that they showed. I thank Marie Curie, the University of Glasgow and especially Dr Emma Carduff, Dr Sam Quinn and Ellie, whom I spoke to that day. Most of all, however, I thank all those who shared their intimate stories and experiences because they wanted to make life better for others. I thank them for that brave and compassionate act, for their insight and for creating such a powerful legacy.

We bear a responsibility to ensure that every citizen enjoys a fulfilling and dignified life right up until the end. However, years of harsh austerity and the cost of living crisis have made a really harsh narrative for the most vulnerable in our society, who face a disproportionate consequence of systematic poverty. The stark reality is highlighted by the “Population mortality impacts of the rising cost of living in Scotland” research that was published in the British Medical Journal. It mentions a projected rise in the number of premature deaths, with the rate being four times higher in deprived areas. If we are to fundamentally change people’s experiences in the final years of life, we must do more to end poverty in every other year of life.

We have heard quite a bit about the costs of terminal illness. It could happen to any of us, but the lived experience of those who are in poverty in their final moments is starkly different. We have heard a lot about the costs that are associated with terminal illness and how it pushes families into further hardship. One of the quotes that I remember from the exhibition was from Amandeep, who said, “Do we heat our house up or do we eat food? It’s very much getting to that point now.” His decision to stay at home created a significant financial burden for his mum, who became his full-time carer. It is not unusual that family members need to reduce their work hours or quit their jobs to become full-time caregivers, and when that loss of income is compounded by the additional costs of terminal illness, there is a double burden on families.

We also heard from Stacey, who should have been reserving her energy but who fought tirelessly for a year to access suitable housing. Stacey did find a home and was then relocated to a hospice. Just weeks afterwards, after Stacey passed away, her partner was asked to move out of the Glasgow property. I am sure that we can all agree that that was not right; surely we can look at doing something to avoid that sort of thing. Scotland must continue to prioritise social security to address economic inequalities, to eradicate poverty and to build financial security for all. Some progressive policies, such as the minimum income guarantee, can play a significant role in that respect.

Nobody should face a relentless battle to meet their basic human needs, and no partner should lose their home when they are struggling with losing their soul mate. I note that, although the Scottish Government is committed to eradicating poverty, today’s debate highlights that we have a very long journey ahead of us. We owe it to all the research participants, their families and citizens right across Scotland to take note of and fully embrace the research and use every devolved power that we have to ensure that everyone can live and pass with dignity, respect, comfort and choice.

13:21  

I thank Paul O’Kane for bringing this important debate to the chamber. I also take this opportunity to thank all those involved in the research for and production of the dying in the margins study, especially all the participants, some of whom are sadly no longer with us. All we can do is ensure that we use their bravery in participating in the project to improve the experiences of others and leave a lasting legacy.

I thank Marie Curie for bringing the exhibition to the Parliament and providing a briefing as well as the images from the project. The photo evidence speaks volumes about what the end of life in poverty looks like. As deputy convener of the cross-party group on poverty, I stress that we need an end to poverty in life, but we must also not forget or lose sight of those in poverty at the end of their life. The project will help to ensure that we do not.

Yesterday evening in the chamber, we talked about the impact of pancreatic cancer and how swiftly conditions can progress. One of the calls from the dying in the margins project is to ensure that terminally ill people are offered timely and affordable adaptations to their property. From experience that has been relayed to me, I know that such things can take far too long. It can be a long-running saga, and it soaks up the time and energy of those who are facing the end of life, instead of their being able to spend that time with friends and family, ensuring quality of life, being able to live well and making memories with loved ones.

The option of moving people from their homes into an already adapted property at the end of life might be a solution on paper, but it is an unwanted disruption to those who wish to stay in the home where they and their families have lived for years. It must be possible to have some creative thinking on how to prioritise or fast-track adaptations for those at the end of life, and medical equipment for individual needs must also be provided swiftly, with any costs mitigated.

The cost of living crisis has pushed up food and energy bills and transport costs, and for those living in poverty, the cost of living has hugely exacerbated the squeeze on already-squeezed budgets. Put simply, it costs money to be unwell. In rural and island areas, those costs represent a greater proportion of budgets. We need a change in the criteria to include those at the end of life, and we should provide increased support to mitigate high energy bills. Although the news yesterday assured us that inflation has now reduced, a figure on a spreadsheet does not lead to milk, bread and other basics falling in cost.

Heating, washing and medical equipment are used more often by those living with medical conditions and at the end of their life. As the Marie Curie briefing highlights, carers are struggling to make ends meet, including 41 per cent of those on carers allowance. Many carers never consider themselves to be carers, as they are partners, parents, friends and children. Indeed, we should recognise that children of younger working-age terminally ill people are vulnerable, too.

Carers’ contributions should not be diminished. Their supportive role is critical to the person whom they care for and to wider society, and there needs to be comprehensive support both for those at the end of life and for their carers. Moreover, once the person is no longer with us, support must be available for families and carers, because after-life costs can have a huge impact on top of the emotional cost.

This is all about dignity, comfort, security and respect. Poverty should not be a trap for anyone at any stage in life.

13:24  

I thank my friend Paul O’Kane for lodging the motion. The study by the University of Glasgow and Marie Curie, supported by the Economic and Social Research Council and led by Dr Naomi Richards, is all the more important because we know that life expectancy in Scotland is not going up—it is coming down. We know that, by 2040, up to 10,000 more people than now will be dying, with end-of-life support needs, in Scotland; that poverty and inequality are rising and fuelling premature mortality; that people are dying before their time.

The fact that much of that is hidden, socially invisible, out of sight and silent is not acceptable; it should not be politically invisible, out of sight or silent. What this important research does is describe the shame of poverty—not the shame of those who are living in poverty but our shame that we allow it to exist at all.

The story told in the dying in the margins report is both harrowing and uplifting. Margaret Mitchell’s images are beautiful. The people in them are beautiful. They bear witness to the real lives of real people in the world as it really is. They are stories, often in the past tense, because most of these beautiful souls are dead, but they are not historical. They are a portrait of what is happening now. It is a mirror up close to the grinding poverty in Scotland today, which strips too many people of human dignity and basic human rights at their time of life, and at their time of death.

It serves as a reminder that being poor is not a simple lack of income and wealth, and that alone; it is also a lack of power. I say to the minister and to members of this Parliament that it is not good enough for us to simply denounce this. The question for those of us with power is: what are we going to do about it?

Are we going to implement the report’s key recommendations on housing, on health and on support for front-line workers? What are we going to do to build a compassionate, decent, humane, democratic and equal society? Because there is a vicious cycle at work here: if you live in poverty, you are more likely to get sick and to live in poor and overcrowded housing, which has a direct link to poor health, both physical and mental.

We do not just want the amelioration of poverty: palliatives; we demand fundamental change. We live in an age of extremes: extreme wealth and privilege on the one hand and indescribable poverty, misery and despair on the other. Because it is a self-evident truth that we live in a class-based society, that there is a class system, that the rich are so rich only because the poor are so poor, and that there is a huge concentration of power in the hands of a few.

We need to change that at its very root—to change the balance of power in order to win not just equality of opportunity but equality of outcomes, so that people do not just live and survive but prosper and flourish. This is about the standard of living, but it is also about the standard of dying. It is about social cohesion and solidarity and about the equal worth of all. Above all else, it is about challenging and changing all the assumptions of the existing social order and replacing them with an ethical, a better and, I would argue, a more socialist alternative.

13:29  

I commend Paul O’Kane for bringing this members’ business debate on the dying in the margins project to Parliament. I thank Marie Curie and the University of Glasgow for their work in capturing the stories, both in the written word and in stunning and poignant images, of the lived experience of those with terminal illnesses and conditions as they approach the end of life. Most of all, I thank those who participated in the study—those who were approaching the end of life and their loved ones—for sharing their stories with great openness and incredible dignity and courage.

I was very lucky, as a few of us were, to meet the loved ones of some of those who participated in the dying in the margins study before First Minister’s question time today, and I also saw those poignant photographs of participants during the summer, at an exhibition in Glasgow’s Mitchell library.

As the convener of the Scottish Parliament’s cross-party group on palliative care, and with Marie Curie based in my constituency, I have a particular interest in the area. However, we must all do what we can to ensure that for those living with a terminal condition and approaching the end of life, in their last few weeks and months, they have as much quality of life as possible and are as comfortable and dignified as possible. We must do all that we can to ensure that people are not dying in the margins.

Inappropriate housing has been mentioned, and it is a clear theme from the dying in the margins project. I know from my constituency case load the challenges with which someone can be presented when they are unable to get swift and suitable adaptations as they approach the end of life. Indeed, I remember a members’ business debate that I held regarding the constructive work that we were trying to do on securing such adaptations for people with motor neurone disease. I think that Maree Todd was the minister at that time.

I again request that consideration be given to establishing a fast-track process for those approaching the end of life. Lack of adaptations can lead to social isolation, compromised safety and dignity and loved ones ending up in hospital or a hospice, as opposed to ending their days at home. I am reminded of Max from the study. Max’s friend, whom I was fortunate to meet earlier, was quoted as saying that he did a runner from the hospice to get back to his dog. That made me smile, because my father tried to escape from a hospice just a week or so before he died. He did not succeed, but he was proud that he had the energy to try. Therefore, Max’s story landed with me on a personal level.

It is also evident from the dying in the margins project that, even when a housing move is secured, it is often during the last few days of life. I saw that from my constituency casework. We saw how loved ones often do not have security of tenancy when they are bereaved, and the impact that that has on them was highlighted strikingly in the study when Joost lost his wife, Stacey. Our Government has a housing bill coming to the Parliament next year, and that might be an opportunity to address some of those issues. I want to work in partnership with the Government to make that happen.

I also note that Mr O’Kane has requested a meeting, and I look forward to attending. The cross-party group on palliative care should have something fundamental to take forward on a cross-party basis.

There were clear financial issues running through the project’s outputs in relation to terminal conditions, and calls were made on the Scottish and UK Governments. I will offer two reasonable requests that were made.

Can we do more in Scotland to support the energy costs of people living with terminal conditions? The additional cost of running medical equipment at home is unfunded by the NHS or local authorities. There are other asks of the Scottish Government in relation to the cost of living. I know that budgets are tight, but can we have a wee look at that again?

There are also asks of the UK Government. If I was diagnosed with a terminal condition while an MSP, my pension would be automatic and I would get a lump sum. People who are diagnosed with terminal conditions in the UK should get their UK pensions early. In my constituency, too many people pay into a pension pot all their life and never draw out a penny because of their life expectancy. That has to change also.

This is not the end of the story for those dying in the margins. Some have now passed, but their legacy will live on. It is up to all of us in the Parliament to ensure that that happens.

13:33  

I, too, thank Paul O’Kane for instigating the debate, and I thank members for their powerful contributions. I, too, had the pleasure of visiting the exhibition at the University of Glasgow. I use the word “pleasure”, because it was a pleasure. The honesty of the photographs and the stories really hit home when I visited the exhibition. There were levels of serenity and acceptance, as well as the colourful clutter of Liz’s flat. All the other speakers have mentioned Max’s dog, Lily, and his great escape to be home with her. The other thing that really struck home for me was Andy’s Post-it notes and the connection that they gave him with his daughter and granddaughter. That was very, very powerful.

I pay tribute to the individuals and their families who took part in the project. I was truly inspired by their courage and strength in sharing their stories at the most difficult times of their lives. I have had conversations with the researchers but, sadly, I have not yet met any of the families. However, in response to Paul O’Kane’s request, I should say that I would be very happy to do so. There is a recognition that they were all doing this to try and change things or, as Paul O’Kane said, to “shine a bright light” on the situation, and I thank them very much for that.

As a Government, we are committed to ensuring that everyone has the dignity, respect and care necessary to their condition right up to the end of their life. That is comprehensive care, as Beatrice Wishart described. We want Scotland to be a place where people and communities can come together to support and care for each other—Ruth Maguire’s speech really emphasised this—and talk openly about planning ahead for when our health changes, and about dying and bereavement. I am sure that we can all reflect on conversations that we wish we had had with our own family members. I am certainly in that position. I would also like to reflect on what Carol Mochan said about affordability. I had a long conversation with a celebrant who emphasised that and the importance of a funeral as part of the grieving process.

One way to start having those conversations is through future care planning, which involves enabling people to talk with health and care professionals about what matters to them. The conversations are recorded and shared as a plan so that the care and support that the person subsequently receives honour that plan. Through the new palliative care strategy that we are developing, we are prioritising work on future care planning, 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 strategy will aim to ensure that everyone who needs it receives well co-ordinated, timely and high-quality palliative care, and care around death and bereavement support, based on their needs and preferences. That support will be available to anyone who needs it regardless of age, illness or socioeconomic background.

Being diagnosed with a life-limiting illness is undoubtedly one of the most challenging things that a person can go through. No person or their family should have to worry about their finances at such a difficult time. That is why the Scottish Government ensures 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, as Collette Stevenson noted. 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. They are eligible for that support straight away, with no qualifying period.

I would like to take the time to recognise the incredible contribution that Scotland’s unpaid carers make to our communities. The pressures that many carers face are well known to most of us. Because of that, my Government is investing more than £88 million per year in local carer support through local authority funding under the Carers (Scotland) Act 2016. The Scottish Government also recognises the extra pressures on people caring for someone with a terminal illness. We have therefore made sure that they have accelerated rights to support in their caring role.

We recognise that too many people are living in poverty, which is why we are committed to breaking that cycle of poverty in Scotland, as Richard Leonard noted. 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. That includes investment to increase the value of our Scottish child payment, funeral support payment and all disability and carers benefits in line with inflation from April 2024, with an anticipated investment of around £300 million. We are also making £83 million available for discretionary housing payments this year to fully mitigate the bedroom tax, to mitigate the benefit cap as fully as possible and to mitigate other UK Government welfare cuts.

We are investing to deliver more affordable and social homes, with £3.5 billion being made available over this parliamentary session. We are taking forward a review of the current housing adaption system, an issue that was raised by Paul O’Kane, Bob Doris and other members. We will make recommendations on how best to improve and streamline the system.

I am aware of and concerned about the pressure on household budgets, including those of disabled people, who are disproportionately impacted by energy costs. My colleague the Minister for Energy and the Environment continually urges the UK Government to take action—she has done so again this week—by using its financial and energy market levers, just as we are doing within our limited powers and fixed budget.

That is why we continue to call on the UK Government to urgently introduce a social tariff mechanism that would provide a much-needed safety net for vulnerable consumers, including disabled consumers and those who rely on medical equipment at home.

I have an awful lot more to say, but I am aware of the time. However, if the Presiding Officer is content, I will put that in a letter to everyone who has spoken.

I recognise that there is more that we can all do. As I said, we are happy to meet with Paul O’Kane.

I again thank those who allowed their stories to be told and the many people from across all sectors who deliver palliative and end-of-life care. The commitment and dedication that that takes, often in extremely challenging and upsetting circumstances, cannot be overstated. I would like to finish by offering my personal thanks for all that you do.

Thank you, minister. I thank members for their co-operation in sticking to their allotted speaking times. That concludes the debate. I close this meeting until 2 pm.

13:41 Meeting suspended.  

14:01 On resuming—