Chamber and committees

That is very helpful. The committee would be keen to see that.

Good morning to the panel. I would like to understand the witnesses’ views on the proposed membership of SEIAC. We have had a lot of submissions about who should be in and who should not be in. The bill sets out the balance between employees and employers and the types of expertise. In your view, is it the right mix or are there things missing from the proposal in the bill?

Lucy Kenyon, your submission mentioned the need to broaden the scope of the membership. Do you want to comment on that?

I think that you are making an argument for that formal role within the SEIAC membership, but I wonder whether, more broadly, there is an opportunity to widen the scope via people or organisations having observer status and being able to share views, opinions and expertise. Although I take the point that you make about having a formal status, do you agree that there is opportunity beyond that?

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.

Good morning, panel. It has been interesting to hear your perspectives. The committee is interested in how the bill might change as it goes through the parliamentary process, particularly in light of the amendments that have been suggested or discussed by those who have given evidence and the Government. I will start by asking about amendments.

As we have heard this morning, the Scottish Legal Complaints Commission has backed the oversight powers for ministers in the bill. That is in contrast to the views of the Law Society and the Faculty of Advocates. However, the Government has intimated that it may lodge amendments to change the nature of that oversight. Mr Stevenson, I would like to get a sense of why the Scottish Legal Complaints Commission arrived at its view. What is your view on the proposed amendments? The expression “watering down” has been used. Might the amendments change the nature of those powers?

In your written response to question 9 in the call for views, you propose technical amendments. They have been suggested a lot as a way to tighten the bill. Can you provide an update on any discussion that you have had with the Government on such amendments and any progress to date?

That is helpful. Colin, you said that there are nine practical and proportionate fixes that could provide a framework for your activities. Will you update us on those and give SSDT’s view of the proposed amendments?

It is useful to hear the degree to which consensus can be achieved. There is certainly an appetite for consensus. I am keen for the committee to get access to the further detail.

The minister is actively misrepresenting my speech. I absolutely agree with what has been said about the Tory Government’s attitude to migration in this country, and I said so throughout my remarks. However, the Scottish Government is here to take action. Why can the minister not answer the question from JustRight Scotland about why the Government has done nothing to mitigate the impacts of the Illegal Migration Act 2023, regardless of what happens tomorrow? Will she support Labour’s principles, which I outlined in my speech, which would see a reformed immigration system in this country?