Dying in Poverty in Scotland 2024

I extend my sincere thanks to colleagues across the chamber who supported the motion for members’ business and helped to secure valuable time for the Parliament to consider what is a crucial new piece of research by Marie Curie.

The “Dying in Poverty in Scotland 2024” report, which is based on research that Marie Curie and Loughborough University carried out on the extent of end-of-life poverty in Scotland, lays bare the prevalence of deaths in poverty in Scotland, with 10,400 people dying in poverty, which equates to one in four working-age people and one in six pensioners, with working-age people with dependent children being most at risk of end-of-life poverty.

The Parliament often discusses the plight of health inequalities—and rightly so—but progress in reducing the disparity in outcomes across health and social care is stagnant and, sadly, the report further highlights that reality on multiple fronts. Indeed, it states that

“more working-age people of a minoritised ethnicity die in poverty in their last year of life, including 47 per cent of Black people”

compared to 25 per cent of white people, and that women are overall more likely to die in poverty than men.

In recent weeks, debate around assisted dying has often referenced the notion of dignity in dying. However, looking at the report and considering the stark figures that I have just mentioned, I think that we can all agree that a dignified death is not a guarantee for many people approaching the end of their lives.

Members might be familiar with an earlier work by Marie Curie and the University of Glasgow—the dying in the margins exhibition, which was shown in the Parliament building last year and documented the impact of poverty on the end-of-life experience of people with a terminal illness. The research in that exhibition captured the reality of the home environment and the barriers that participants experienced as they approached the end of their lives in poverty.

One example that has stayed with me is that of a patient who lived in a housing association home that no longer met their accessibility needs as they got more poorly and infirm. As the tenant was approaching the end of his life, the housing association was not willing to make the necessary investment in adjustments to make the home more suitable and comfortable. That meant that the gentleman could not die as he wanted—in his own home, in a familiar setting—but ended his life in hospital. Any of us with a loved one in that situation would be deeply distressed by such a situation.

It is not good enough. It is important that people at the end of their lives have agency, choice and control, but research for the dying in the margins exhibition in 2023 and the “Dying in Poverty in Scotland 2024” report found that that is not the reality for too many people in Scotland—they do not have that agency, choice and control.

The report recommends that the Scottish Government consider specific support for terminally ill people with dependent children under 16, as well as support for all terminally ill people with energy costs. I would be grateful if the Minister for Public Health and Women’s Health could set out in her remarks what assessment the Government has made of the report and what steps it will take to realise those recommendations. I note that the Consumer Scotland report that was published last week also recommended targeted financial support for those who are terminally ill.

I have now proudly brought two debates to the Parliament relating to the work of Marie Curie. That is for two reasons. First, I have been familiar with its exceptional work from a young age, since I helped to fundraise for the new hospice in the grounds of the Stobhill hospital when I was a pupil at nearby Turnbull high school more than 17 years ago. Secondly, I was fortunate to visit the new hospice at Stobhill last year and to meet several constituents who were nearing the end of their lives. Their experiences and stories have had a lasting impact on me.

One patient comes to mind, whose story I have previously shared in the Parliament. She lived in Bridgeton, which is a deprived area of Glasgow, and was only in her early forties. She approached her general practitioner multiple times to complain of pain that she thought was tonsillitis but was dismissed and repeatedly sent home with painkillers. She had a difficult upbringing and a fairly chaotic lifestyle but felt that she was getting her life back on track when she was struck down by the chronic condition for which she was struggling to get support.

By the time that she was listened to, referred on and diagnosed with neck cancer, it was terminal and too late to treat. She spoke to me through a tube in her throat, in the final stages of her life, and relayed to me her distress at being robbed of her future. She had two young children—it was a very difficult conversation to have with a young mother in that situation. Having overcome so much adversity, she was then robbed of her life at what she felt was a turning point. We talk about the Glasgow effect and poverty and inequality, but it sometimes hits you really starkly, and that was certainly a very moving experience for me.

Paul Sweeney has made a very powerful contribution on what is a massively important issue. Is it not right that society should reflect on how it cares for those at the very start of life—babies and children—but also for those at the end of life? The member has adequately shown that we are not addressing that sufficiently and in the right way at this time and in this place.

I thank my friend for making that great observation. What struck me from the experience of the discussion with that lady, who sadly passed away just the day after I visited, is that from the very early stages of someone’s life they are doomed in many ways to an early death—a premature death. That is the nature of inequality in Scotland today. The social determinants of health at the very early stages of infancy and childhood are critical. We need to understand that if we are to truly solve the ingrained issues of inequality in our society.

I am grateful to my colleague Paul Sweeney for securing this important debate. I pay tribute to him for all his support for Marie Curie. Recently, 2,500 people in Central Scotland have emailed me to stand up for hospice care, and I know that colleagues have had many similar emails. Does he share those people’s fear and mine that, if the Scottish Government does not do more to fund and support our amazing hospices, it will be the poorest people in Scotland who suffer the most?

I completely agree with my colleague. We often underestimate that issue, because the dead have no agency. People in the final stage of their life are just dealing with the immediate trauma and effects of that, so their capacity to reflect and advocate is limited. Monica Lennon makes an important point in that respect, which is why the studies that I have mentioned are so critical. It is also critical that we get hospice care right. When I visited the Prince and Princess of Wales hospice, a third of its beds were unusable because of a lack of nursing staff, due to the differentials in national health service pay rates.

I completely agree with Mr Ewing’s observation—that is absolutely critical. It is a universal truth that we will all face the end of our lives at some point, and most of us will rely on palliative care or hospice care of some kind. Therefore, it is important that we better integrate that. That is the essence of what was aspired to in the national care service, and we should consider how we can better do that. In doing so, we would release capacity in acute hospitals and thus create a virtuous cycle of efficient healthcare expenditure.

The Marie Curie report rightly references the practical financial difficulties that terminally ill people in poverty face but, as evidenced by the constituent who I spoke about, regrettably, that group of people often have less agency and have to advocate more and push harder for answers than their less deprived counterparts. For my constituent and others in Scotland like her, I commend the motion in my name.

I thank my party colleague Paul Sweeney for bringing this important debate to the chamber and everyone at Marie Curie and its partners for producing their vital report.

Everyone deserves as pain-free and peaceful a death as possible, surrounded by those who love them, in a place that comforts them and where they can make choices. However, as with so many things across the course of our lives, the process of death is influenced by the poverty and inequality experienced by so many.

That poverty is the root of the injustice that permeates our society and that is sustained by so many from cradle to grave. I simply cannot accept that, which is what has driven me to speak in today’s debate and in others on the subject. We must do more to end the situation in which so many people have so little while a few have so much. With the inequalities surrounding death so prominent in our national debate, there has never been a better time for the report, or for this debate.

At every stage of a person’s life, including death, poverty is an anchor on their ability to live as others do. I have met constituents who spend much of their final years of life worrying about how they can afford to leave their families behind or even about whether they can afford the care required to sustain a moderate quality of life until the end. The truth is that some in our society are worried about avoiding paying tax on second homes that they want to pass on to their children while others are worried about whether they can afford even the cost of a funeral. That is not a just or fair society.

According to the report, 17 per cent of those who died in 2023 in my home area of East Ayrshire did so in poverty, with 23 per cent dying in fuel poverty. Figures vary across my South Scotland region, but are not drastically different, which means that almost one in five people are struggling to heat their home or to put food on their table. Those people are often aware that, sadly, they are soon to pass. Can members imagine the mental and physical strain that that sort of pressure puts on a person and on their family? I think that we can all agree that nothing could be worse.

We have heard today that simple things, such as needing to make adaptations to a house, can be a luxury for people who are unsure if they can even afford to feed their own family. That is simply unacceptable. I will be clear: I believe that we need not have an economy that works only for the rich; rather, we should have one that ensures that everyone in society has the means to live and die in dignity.

We live in one of the richest countries in the world, but, in 2024, many among us experience constant poverty. From the cradle to the grave, that is all that they have known or will ever know. We must all accept that truth, although it is as unacceptable today as it was many decades ago when the welfare state was transformed by serious Government intervention. I believe that we require a similar revolution in practice and in thinking to address the problems that I, and many others in the chamber, have highlighted today. I call on everyone to think of that and I call on the Scottish Government to respond to the points raised by my colleague Paul Sweeney and others. We must look to ensure that we eradicate poverty in this country, which, as I stated, is one of the richest in the world.

I, too, thank Paul Sweeney for securing this debate on palliative care. I commend Marie Curie for its report “Dying in Poverty in Scotland 2024”, which shines a light on the very difficult situations that many people find themselves in at the end of life. People who are facing terminal illness often lose their incomes and move on to benefits. That can be difficult when someone is facing the end of life, and more so if English is not their first language.

There are many excellent support services out there that help people—Marie Curie, Macmillan Cancer Support and the like—and there are also small local charities that provide support. An example is Western Isles Cancer Care Initiative. WICCI advocates for all people with cancer—something that is even more important for those with a terminal diagnosis—provides small grants and helps people to access support. However, not everyone is lucky enough to be able to access such excellent services.

For people who live in the Highlands and Islands, fuel poverty is also an issue. When people are unwell, they need to be warm, and if there are concerns about the cost of heating that simply adds to the stress. We can only imagine the stress of dying. We will all face it, but it is difficult to imagine. I am sure that we have all faced the stress of losing someone close to us—worrying about their wellbeing and trying to make sure that their last precious days are comfortable and free from worry and that they can live them well. If financial constraints prevent families from ensuring a good death, that adds to their distress and the grief that they have to deal with.

Hospices are crying out for funding, and hospice-at-home services are desperately needed. Most people want to die at home, yet 70 per cent of us will end up in hospital towards the end of our lives, and many who go to hospital will die there because of a lack of hospice care in the community. Such people make up much of the delayed discharge figures, as we have heard. In Highland, £45 million is spent yearly on end-of-life care in hospital, while only just over £11 million is spent on end-of-life care elsewhere. I support Miles Briggs’s proposed member’s bill to improve end-of-life care in Scotland.

I thank my friend for giving way. She made a powerful point about the numbers of people who are dying in hospital at the end of their lives. The position is particularly egregious in rural settings. When I recently had the opportunity to visit Skye with the Health, Social Care and Sport Committee, a number of people there expressed their fear that they would end their lives potentially hundreds of miles from home and far removed from their friends and family, with all the stress that that might place on their relatives who would try to visit them in their final days. Does my friend recognise that the problem is particularly egregious in rural and remote settings that are further afield than the central belt?

Yes, indeed. That is a common situation in the Highlands and Islands, where it is very difficult for families who want to spend time with loved ones.

Highland Hospice knows that and it is leading the charge in Highland. It has formed partnerships with services and the third sector and delivered a 24/7 helpline for people with palliative end-of-life care needs. That alone has saved NHS Highland £2.3 million, while providing support for 415 people in just six months. Kenny Steele, who is the chief executive officer at Highland Hospice, says that delivering better planned and co-ordinated care towards the end of life will result in less unscheduled care in hospital and deliver better value and high-quality care.

However, we need the statutory services to be on board to make sure that that model works. It saves money but, most important, it allows families to enrich the final days of their loved ones, who can live their lives to the end. When days are few, life is precious.

I will.

I agree that that is a huge problem for Highland Hospice. I commend its fundraising effort and the communities that support it, but things should not be that way, and I hope that they will not be in the future if statutory services help the hospice.

Wasting days in hospital really helps nobody, and especially not those who are in their final moments.

I thank Paul Sweeney for leading this debate.

The figures produced, and the human face of what they mean described by Marie Curie in its report, are startling. In Falkirk, one in seven people dies in poverty, in North Lanarkshire it is one in six, and they are not just dying in poverty—they are dying of poverty.

There are other dimensions, too. If a person living in Scotland is black, Asian or from a minority ethnic background, they are twice as likely to die poor than they are if they are white, and while we learned yesterday that men living in Glasgow no longer have the lowest life expectancy in the UK, Scotland still has the lowest life expectancy of all the UK nations.

The gap between the life expectancy of the richest and the poorest is wide, and it gets wider every year. According to the National Records of Scotland, women living in the most-deprived areas are, on average, expected to live 25 fewer years in good health than those in the least-deprived areas. For men, it is 26 years. That is a public health issue. It is also a class issue. It is a political issue.

We are witnessing an immiseration of the poor and rising indebtedness, but it is not just grinding poverty—it is rampant inequality. Spiralling wealth, affluence and greed have come together with this plague of impoverishment.

I am happy to agree with the Conservative member on the importance of inequality in looking at all those issues.

We hear the voices of the rich and the wealthy in this Parliament, whether they are the landlord or the landowner, and we hear the voices of financial capital and the banker of the corporation and the super-rich, but we hear far too rarely the voices of the disinherited and the dispossessed—those who are bearing the brunt of this immoral injustice.

Poverty is not solely a lack of wealth: it comes with a self-reinforcing lack of power. We know that poverty, low pay, unemployment, poor housing and run-down public services invariably go together, and that hopelessness and powerlessness breed a crisis of confidence that leads to demoralisation, then to alienation and then to acquiescence. As Steve Biko attested:

“The most potent weapon in the hands of the oppressor is the mind of the oppressed.”

If we want people to realise all their potential, and not to spend their entire lives—still less their dying days—imprisoned in poverty, and if we want people to be freed from this and to be literate, passionate and fulfilled in all their diversity, then it is clear that we need radical social change.

That change cannot be left to the market and the nostrums of neoliberal economics, which simply fuel inequality. We cannot leave it to short-term mitigations, ameliorations or palliatives. To my own party, I say in all honesty that neither can we leave it to modest reform, to more efficient economic management or to the improved administration of the state. It was John Smith who said that the job of the Labour Party was to

“persuade millions of the strength of our vision, the relevance of our policies and the urgency of our demand for change”.

That is the radical tradition that all of us who want to change the outcomes that are set out in the report must return to—a “slow revolution”, in Danny Dorling’s words, a “long revolution”, perhaps, in the words of Raymond Williams, but a revolution nonetheless.

Too many people are dying in poverty and too many are living and dying in fear, so we must use all the powers that we have—parliamentary and extra-parliamentary—to bring about change. That is our job—to lift people’s horizons out of the hardship of the present by putting forward a vision of the better life, the better death and the better society.

The minister is making a series of helpful suggestions, which are welcome. Will she consider looking at forthcoming legislation and the Housing (Scotland) Bill, in discussion with her colleague the Minister for Housing, to place more obligations on landlords to make necessary adaptations for people who are facing a terminal illness, so that they are more likely to stay in their own home?