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I ask people who are leaving the public gallery to do so as quickly and quietly as possible as we resume business.
Our next item of business is a members’ business debate on motion S6M-15411, in the name of Paul Sweeney, on the publication of the Marie Curie report “Dying in Poverty in Scotland 2024”. The debate will be concluded without any questions being put. I invite members who wish to participate to press their request-to-speak buttons.
Motion debated,
That the Parliament welcomes the publication of the Marie Curie report, Dying in Poverty in Scotland 2024; understands that the report is taken from research carried out by Marie Curie and Loughborough University; notes that the report has found that one in four working age people and one in six pension age people in Scotland face poverty at the end of life; understands that terminal illness exacerbates existing inequality; notes the report’s findings that symptoms of terminal illness can result in higher energy costs, costs for housing adaptations and force people to leave the labour market and rely on social security support; considers that these challenges are not confined to the dying person, but also affect family and unpaid carers who, it believes, are too often left to carry out the bulk of caring duties due to what it sees as inadequate support; notes the belief that more must be done to target support to those who are facing dying, death and bereavement, and further notes the calls for governments to consider the report and work with Marie Curie to prevent people in Scotland, including those in the Glasgow region, from dying in poverty.
12:49
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 commend Mr Sweeney on his excellent speech and agree with the points that he makes. Does he agree that we could organise the NHS much better, and that it could support Marie Curie, Macmillan Cancer Support nurses and hospices much more effectively and practically, at much less expense and far quicker for those who require end-of-life care? That can be done without necessarily increasing the overall amount of money that is provided, by getting the public sector to work more effectively with those marvellous charitable institutions in Scotland.
Please begin winding up, Mr Sweeney.
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.
Thank you Mr Sweeney. We move to the open debate. There is quite a bit of interest. I am intending to get everybody in, but I am also conscious that we begin afternoon business at 2 pm, so we will need to leave enough time for the chamber to be prepared for that.
12:59
I thank Paul Sweeney for bringing this hugely important report to the attention of the chamber. I also extend my sincere thanks to Marie Curie and Loughborough University for researching this urgent issue and bringing the reality faced by those dying in poverty to our attention. I commend him for the way in which he narrated the experiences of his constituent—none of us can fail to be touched by what he put to us.
We rightly spend a lot of our energy and resources in the Parliament combating the scourge of child poverty and doing all that we can to ensure that, from the very beginning of life, this nation nurtures our youngest. Despite all the challenges, we are making good progress in that regard.
However, what we do not talk enough about in the Parliament, in our communities and in our homes is dying. As a nation, we find it too difficult, too awkward and too upsetting to speak to one another about the reality of death, dying and terminal illness.
In addition, when we are creating policies and strategies to eradicate poverty, what we do not think about enough in the Parliament is how poverty manifests itself for people who have a terminal illness and their families. No one who is dealing with a terminal prognosis should be worrying about ensuring that they are warm enough, can run any specialist equipment that they rely on and have enough money to get the nutrition that they need to be as well as they can be.
Dying from a terminal illness will always be the most difficult thing that we might face as human beings, and Paul Sweeney outlined how that affected that young mum. It is an existential crisis. However, as a nation, we cannot thole the reality that is faced by too many who simply do not have enough money to live their last moments in comfort and, instead, live in cold surroundings with mounting debt and ever-increasing worry about what they are leaving behind for their loved ones. That anxiety alone is a heavy burden to bear.
In East Ayrshire, which forms part of my Carrick, Cumnock and Doon Valley constituency, 28 per cent of people with a terminal illness die in end-of-life poverty and 23 per cent die in fuel poverty. Far too many of my constituents in rural areas who are reliant on an oil heating system face the most horrendous fuel poverty when dying.
Will Elena Whitham give way?
Yes, in two seconds.
Rates of fuel poverty when dying are also higher for people in older socially rented homes.
Will Elena Whitham reflect on the comments that we have heard about the lack of a budget for aids and adaptations? For example, a housing association in my area needed £3 million but only got £700,000. Although there is an increase in the budget for that this year, it still falls way short of what is needed. Do you share my disappointment that the Government is not stepping up to the mark and delivering the funds that are needed?
Please speak through the chair.
I recognise the issue that Finlay Carson has put to me. I have made representations to the Government on that on several occasions, and have gone back and forth between the health and social care partnership and registered social landlords. I absolutely get the point that Finlay Carson raises, and I will continue to challenge the issue.
Paul Sweeney set out that 10,400 people die in poverty in Scotland—there has been an increase of 27 per cent from 2019. As we have heard, the figure is even higher—one in four—for people who are of working age. In Scotland, one in five people die in fuel poverty in their last year of life.
The report identified particular groups that are at risk of dying in poverty, including working-age parents with dependent children, women and people from minoritised backgrounds. That is why collecting and collating disaggregated data is essential in understanding the issues across groups. As Paul Sweeney outlined, 25 per cent of those from a white ethnicity die in poverty when they face a terminal illness, but a staggering 47 per cent from a black background with a terminal illness die in poverty. We need to understand all the drivers behind that so that we can make coherent policy.
There are steps that the Scottish Government can take that will make an impact, and I ask the minister to reflect on them. We should extend the eligibility for the Scottish child payment to parents living with a terminal illness with dependent children under 16 on the presentation of a benefits assessment under special rules in Scotland—BASRIS—form that confirms that they are eligible under the special rules on terminal illness situations. We should provide extra financial support for terminally ill people with their energy bills, which could include extending eligibility for the winter heating payment to all terminally ill people and reinvesting in the fuel insecurity fund. We should bring forward a minimum income guarantee and work even harder towards eradicating the gender pay gap, which has an impact on women who are dying in poverty.
We urgently need a social tariff for energy to prevent fuel poverty at the end of life, and I urge the United Kingdom and Scottish Governments to make that a reality.
I also support the calls for the UK Government to unlock pensions for people who are close to pension age who have a terminal diagnosis. For those who have not paid enough national insurance contributions at that point, the Government should ensure that they have a pension-level payment. That feels like the right thing to do.
13:04
I say well done to Paul Sweeney, not only for bringing the debate to Parliament but for the speech that he delivered, which was very moving.
Paul Sweeney was quite right to say that Marie Curie’s “Dying in Poverty in Scotland 2024” report is a crucial piece of research, and it is incumbent on all of us—as Elena Whitham rightly spelled out—to take notice of it. The issue is particularly important and topical at the moment, given the assisted dying debates that are on-going north and south of the border. Those debates have raised critical issues in relation not only to that particular ethical decision that we have to make, but to how compassionate our palliative care system is. For that reason alone, I find those debates incredibly interesting. They are also extremely important, because they raise the whole issue of palliative care.
I am glad that it is clear from what we have heard in recent weeks that there is cross-party agreement on how significant this issue is. There is clear acknowledgement that the report’s findings paint a disturbing picture of the lack of support that is available to some of the most disadvantaged in our society in their final moments of terminal illness.
The scale of the numbers is stark. The report found that, in parts of the Mid Scotland and Fife region, around one in five people died in end-of-life poverty. The fact that such a large proportion of people are not receiving support is a matter of concern to us all. I pay tribute to Fergus Ewing, who made an important point about how we might better address that. The report goes into considerable detail—forensic detail, in fact—on the wide variations between different demographic groups. The proportion of single parents of working age who die in end-of-life poverty is as high as four in 10.
As we are all aware, palliative care is predominantly administered by the charitable sector. I pay tribute to the work of the charities Marie Curie and Cancer Card, which provide such a comprehensive service that is so admired by the public to so many people in giving them peace of mind at the end of their lives.
I thoroughly endorse what Liz Smith has said, and I appreciate the way in which she has said it. This is one of the most pressing problems in Scotland right now. Is she aware that, in Highland, one in three acute hospital beds at Raigmore hospital are believed to be occupied by people at the end of life? Highland Hospice believes that at least 40 per cent of those people could receive better care where they wish to be cared for—in their own homes, in the community. Frankly, Raigmore, which provides an excellent service to those who need to be fixed, is in danger of becoming a care home rather than an acute hospital.
I was aware of that statistic, but only because Mr Ewing raised the issue earlier this week when I was in the chamber. I was taken aback by that statistic, because it is very serious. It is one that should make us think very carefully about the way forward. As Mr Ewing has rightly pointed out, we cannot have that circumstance, because hospitals have to get on with so many other things. We must address the issue by ensuring that people who are at the end of their lives get better care than that which it is possible for them to get in hospitals. I am not taking anything away from the care that is provided in hospitals, but I think that we can do things better.
The Finance and Public Administration Committee, of which I am a member, has been looking closely at the economic consequences of Scotland’s ageing population, but the report that we are discussing today highlights the social challenges of the current situation. I pay tribute to my colleague Miles Briggs, who, with his proposed member’s bill on a right to palliative care, is trying to address a lot of the questions that Mr Sweeney flagged up. It is essential that we do something about that issue, and I give my full support to Miles Briggs. We must do this better. I am sure that the Deputy Presiding Officer, of all people, is conscious of that, as the member who introduced the Assisted Dying for Terminally Ill Adults (Scotland) Bill.
I thank both Paul Sweeney and you, Deputy Presiding Officer. I might not always agree on some aspects of the debate, but I think that you have done a wonderful job in bringing that bill to Parliament.
Thank you very much, Ms Smith.
13:09
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 call Bob Doris, who is joining us remotely. [Interruption.] I am sorry, Mr Doris, but your microphone does not appear to be working. Can you start again? [Interruption.] I am afraid that we still cannot hear you.
I will call Rhoda Grant first while we sort out the issue. We will try to come back to you, Mr Doris.
13:14
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.
Will the member take an intervention?
I will.
Please be very brief, Mr Ewing.
Having met Kenny Steele recently, does Rhoda Grant agree that, although the Government works with all hospices throughout the country, Highland Hospice’s funding from the Government amounts to only 25 per cent—£2 million—of its £8 million running costs, whereas many other hospices are fully funded?
I ask Rhoda Grant to conclude.
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 am going to give Mr Doris a little more time to get the audio sorted out. I call Miles Briggs.
13:19
Thank you very much, Presiding Officer. My mic is working, which is good.
I pay tribute to Paul Sweeney for bringing the debate to the chamber. I also pay tribute to Marie Curie for the amazing work that it does in all our communities to support people who are at the end of life and for the research partnership that it has developed with Loughborough University. We know the stark figures that that work has presented. It suggests that, in my region, 20 per cent of working-age people with a terminal illness are dying in fuel poverty.
The statistics in the report are human beings—they are people who are dying. We need to remember that when we throw the statistics around in the chamber. However, we can do something about it. That is why I want to introduce a right to palliative care bill, which a number of members have mentioned.
I launched the consultation on my proposals back in March and received substantial feedback from many organisations and very much so from the hospice sector. The national health service, which was established some 76 years ago, and the founding principle of that service—providing care from the cradle to the grave—underpin the social fabric of our society. However, a number of members, including Fergus Ewing, have highlighted the unrecognised reality that palliative and end-of-life care are predominantly provided by the charitable sector. That is right in many cases, because it provides the quality of care and the wraparound care for family and friends that we want.
We do not have a legal right to palliative care; that does not currently exist. Under current contracts, GPs are obliged to support patients with generalist palliative care. However, far too many patients do not receive such care and do not have their needs met. As we all know, GP resources are completely overstretched. The integration of health and social care, which the Parliament passed legislation on, has not corrected that and has not delivered the change that we all want. Marie Curie’s dying in the margins research brings to light the financial hardship that many people from the most deprived communities in our country face, especially those who face terminal illness.
My proposed bill would establish a legal right to palliative care, but we also need to have conversations about wraparound support. Debates are progressing through Parliament on the national care service. The proposed human rights bill could have been an opportunity to take forward some such debates. The Housing (Scotland) Bill, which is before the Parliament, provides that opportunity, too. However, we need to look towards a better opportunity to solve some of those problems and find solutions that the Government, business and industry can be part of.
I mentioned business and industry. Later today, I will meet Alasdair Allan, the Acting Minister for Climate Action, alongside the fuel poverty campaigner Carolynne Hunter, to discuss progress on the development, along with industry, of a social tariff. The First Minister announced that the Scottish Government is looking to take that forward. I hope that it can be progressed UK-wide and that industry will be part of ensuring that that happens. We would all welcome that, because it is beyond time that a social tariff was developed, and it could present a solution for many individuals in our country.
In its briefing ahead of the debate, Marie Curie made a number of positive suggestions about how terminally ill people could be directly supported with their energy bills. The suggestions included extending eligibility for the winter heating payment to terminally ill people and reinvesting in the fuel insecurity fund. Together, the UK and Scottish Governments can take forward opportunities for us to find solutions that can turn the situation around.
No one should die in fuel poverty—no one in the chamber has raised any question about that—but we need to deliver workable solutions. Early intervention is one of the keys. Many people are not aware of the support that is available and do not seek it when they are at their lowest ebb and are dying. We need to ensure that our systems, especially our welfare systems, can work to change that.
I call Bob Doris, to be followed by Richard Leonard. Mr Doris, you have around four minutes.
Even with the headset off, Mr Doris, I am afraid that we cannot hear you. We will try to rectify that. I will go to Richard Leonard and, in around four minutes, we will come back to you.
13:24
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.
Does Richard Leonard recognise the huge inequalities that exist in rural Scotland? In Dumfries and Galloway, there is no hospice. We have just seen the integration joint board decide to close beds in our cottage hospitals, which means that people who need care at the end of life often have no choice but to stay in an acute hospital, where the facilities are far from adequate.
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.
I call Bob Doris again.
13:29
I very much hope that you can hear me, Presiding Officer.
Third time lucky, Mr Doris—on you go.
Thank you for your patience.
As the convener of the Scottish Parliament cross-party group on palliative care, I welcome the opportunity to discuss once more the issues that relate to tackling poverty for people with terminal conditions and those who are approaching the end of life, as well as their families and carers.
I thank Paul Sweeney for securing the debate, which allows us to consider the thoughtful and, frankly, the rightly fundamentally challenging Marie Curie report, “Dying in Poverty in Scotland 2024”. That challenge provides an imperative for the UK Labour Government and the SNP Scottish Government to work together. No one should be living in poverty, let alone as they approach the end of life. The dying in the margins study by Marie Curie set out the unvarnished reality of living in poverty with a terminal illness. We must all work together to do more.
At the heart of the recommendations from Marie Curie is a direct challenge to the UK Government to use the UK benefits system to tackle poverty at its source by allowing those of working age who have less than 12 months to live to access their state pension if they have sufficient national insurance contributions. The recommendation also says that those who do not have sufficient contributions should be able to access pension credit. I am inclined to support that call and would welcome a meeting with Marie Curie to see how we can progress that, and ask the UK Government to consider the recommendation. I am not suggesting that it will be easy—it will present complexities and financial challenges—but we must try.
A key recommendation for the Scottish Government is to consider whether to enshrine in law an explicit right to palliative care. Mr Briggs, who we have heard from in the debate, is consulting on a member’s bill on that, and I wish him well with it. I have stated in the chamber that I support that right, and I have said that we must not only enshrine that right in law but ensure that it can be exercised in an effective, equitable and consistent way. That does not necessarily require legislation, because we already have in Scotland a palliative care system with some wonderful practice. However, the system is under pressure, it needs to be expanded and it requires innovation. Enshrining that right in law can drive some of that change.
The Scottish Government is consulting on a new draft palliative care strategy. Getting the strategy and future strategies right is key, as is how integration joint boards and others fund, finance and commission services. That sits at the heart of the exercise of any right. Yes—the sector needs more financial support, but the cross-party group also heard that innovation, service redesign and a meaningful partnership with the third sector can improve service and save money.
The additional £4 million for hospices that was announced in Scotland’s budget yesterday will help, as will the Scottish Government’s guarantee that future NHS agenda for change pay awards in Scotland will trigger commensurate uplifts to fund the required pay increases in hospices. I have been calling consistently for that for some time—it will make a real difference. It would also make a real difference to lift the £2.5 million bombshell that UK national insurance increases will inflict on the sector.
I am also attracted to the recommendations to extend the Scottish child payment and winter heating payments to families or individuals in cases where someone is terminally ill, perhaps within the last year of life. That is similar to the calls on the UK Government in relation to pensions. Again, I would welcome a meeting with Marie Curie to discuss that further. I would also welcome a meeting with the minister, along with Marie Curie, to discuss not only those proposals but the on-going challenges that hospices face.
I again thank Paul Sweeney for bringing the debate to the chamber.
Thank you for persevering, Mr Doris.
I call the Minister for Public Health and Women’s Health, Jenni Minto.
13:34
I extend my thanks to Paul Sweeney for bringing this incredibly important and relevant motion to Parliament. The dying in the margins exhibition and research have remained with me, as they have with him, and I reference them very often in my role.
I put on the record my heartfelt thanks to every member of Marie Curie staff and every volunteer across Scotland for everything that they do, day in, day out, to support people who are terminally ill, their families and loved ones. There will be few—if any—in the chamber whose lives have not been touched at some point and in some way by the issues that Marie Curie does such remarkable work to tackle. It is right that we all acknowledge that work, and I thank all members for their contributions.
Elena Whitham mentioned the importance of talking about the reality of death and dying. I agree whole-heartedly with her point, and I do that as a constituency MSP whenever I get the opportunity.
Liz Smith, as always, made a thoughtful and practical contribution. I recognise a lot of the points that she raised.
Carol Mochan, your description of poverty being an anchor was resounding and I thank you for that. I will remind myself of that, because you are right that it is the people who are impacted, and it is the people we need to think about. I cannot disagree with any of the sentiments that you or your colleague Richard Leonard expressed in your contributions.
Please speak through the chair, minister.
My apologies, Presiding Officer.
As Miles Briggs said, raising awareness of the issue is so important.
Bob Doris talked about the actions proposed in the Marie Curie report on social tariffs to protect people who are living with terminal illness from spiralling energy bills and to address recent real-terms cuts and freezes in working-age benefits. I note the atmosphere in the chamber and would very much like to work with members across the chamber to have a discussion to see how we can influence the choices and decisions of the UK Government.
The Scottish Government is assessing the report and looking at where we can make changes. I will touch first on the social tariff mechanism. We have repeatedly called on the UK Government to introduce a social tariff, and we have been working with the current UK Government on that. We have convened a working group made up of energy suppliers and consumer organisations, chaired by my colleague Dr Allan, to establish how a social tariff could operate. We have had a positive meeting with the UK Government and we will share the outputs of that. That is an example of Governments working together, which Bob Doris and Paul Sweeney spoke about.
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?
I thank Paul Sweeney for that intervention. I am sure that Mr McLennan will be listening to the debate and taking heed of the points that are being raised.
A number of members have mentioned the situation with ethnic minorities and actions to access equitable healthcare. The Cabinet Secretary for Health and Social Care has called out racism as a major public health issue, and we are working closely with health boards across Scotland to improve access to and experiences of healthcare, taking a proactive anti-racism approach. I recognise the concerns that members have raised.
On fuel poverty, the warmer homes Scotland scheme has been allocated £65 million this financial year—its highest budget to date—and we are now increasing that by a further £20 million to support even more households.
In recognition of the pressure on household budgets, our winter heating payment was uprated by 10.1 per cent for winter 2023-24 and a further 6.7 per cent for winter 2024-25. Just last Thursday, the Cabinet Secretary for Social Justice, Shirley-Anne Somerville, announced that we will be bringing forward regulations for next winter to introduce a universal pension age winter heating payment. All pensioner households, including those with a person of pension age who is terminally ill, will get support with their heating costs. That is not available elsewhere.
Elena Whitham mentioned the Scottish child payment. It is not possible to pay the Scottish child payment to families with dependent children under 16 on presentation of a BASRIS form, because that does not relate to entitlement to a qualifying reserved benefit. However, the Scottish child payment is just one part of our radically different Scottish social security system, in which we fast track disability assistance applications from terminally ill people, and in which terminally ill people automatically receive the highest rates of disability assistance that they are entitled to. Importantly, there are no time limits on the definition of terminal illness. That decision is made by clinicians.
As Elena Whitham also mentioned, a minimum income guarantee has the potential to deliver transformational change and reduce poverty and equality. We are looking forward to receiving the final report from our minimum income guarantee expert group, which is likely to be early in the new year.
As part of the record spending that was announced in yesterday’s budget, we are supporting the delivery of the highest standards of palliative care and are strongly committed to equitable access to it. As other members have noted, that is why we published our draft palliative care strategy for consultation, which I believe closes on 10 January—it is certainly early in the new year. That is an absolutely important piece of work, and I encourage everyone in the chamber and more widely to contribute to it, because, as Elena Whitham said, we need to ensure that we are thinking about the best deaths for people.
Will the minister take an intervention?
The minister is just winding up.
I absolutely reflect on what Fergus Ewing has been saying about the fantastic work that Highland Hospice does. As the cabinet secretary said earlier in the week, we need to ensure that partnership work with NHS Highland is strengthened. That is an important way to work. We also have important connections with the Scottish Ambulance Service, which provides home support with Macmillan Cancer Support.
On Miles Briggs’s potential member’s bill, I will meet him and Marie Curie early in the new year. On Bob Doris’s point, I am very happy to meet members who have contributed to the debate, because I believe that we have to approach the issue from a very non-political perspective and work together to get the best results for the people of Scotland.
That concludes the debate.
13:43 Meeting suspended.Air ais
First Minister’s Question TimeAir adhart
Business Motion