 The members of the public in the public gallery are in the public gallery to leave the Chamber quickly and quietly because we are going to go back into session to move on to our next item of business. The next item of business is a members' business debate ond M10827, in the name of Paul O'Kane, on dying in the margins. This debate will be concluded without any questions being put. I would take this opportunity to advise members that we are short of time today and there are a number of members seeking to speak in this debate. I hope that I can rely on members to co-operate with the fact that we will be sitting again at 2pm. We must allow the parliamentary staff sufficient time to do their job in clearing the chamber, so I would ask all members to stick to their time. That is seven minutes for the member opening the debate, four minutes for each member in the open debate, and seven minutes for the minister. Thank you. I would ask those members who would wish to speak in the debate to please press the request-a-speak button and I call on Paul O'Kane to open the debate. Mr O'Kane. I'm very grateful, Deputy Presiding Officer, and it is my pleasure to have secured today's debate on the dying and the margins report produced by the University of Glasgow and Marie Curie. I want to begin by welcoming to the Parliament family members and friends of some of the study participants who are with us in the gallery today. I'm very pleased that you have all been able to join us here to hear us discuss this important piece of work and indeed the stories of your loved ones that were shared so vividly in the exhibition and in the report. Indeed, I think that 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, of course, that there is nothing more certain in life. Of course, despite all of that, it touches each of our lives in different ways for those who are caring for loved ones with a terminal illness, who are left behind. I think that we should reflect that for every single person, you only have one, perhaps one mother, one father, one child, one brother, one sister, one dear friend and their death will impact and affect you in different ways. Of course, it can be exacerbated by different factors and indeed poverty being so clearly a huge factor in terms of the way that people experience the end of their life. I also want to take time to thank all members who signed my motion. I look forward to hearing all the contributions in the debate today. I once put on record my thanks to members who have taken additional steps to highlight the work of the research and the exhibition. Indeed, Evelyn Tweed for sponsoring the exhibition, which is just outside the chamber and I do hope that members have had a chance to see it and to discuss the report with colleagues from Marie Curie and from the university. The existence of poverty and destitution in Scotland is a shame upon us all and the research conducted by the university and Marie Curie lays bare that poverty and destitution exacerbate the most distressing and difficult periods in an individual's life and their family. At a point where 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 more worried about whether they can heat their homes rather than spend their final months around family and friends is both unthinkable and unacceptable. That is why I so welcome the research project that has been put together because I think it really rips the cover off the issue. So often population level data can blur the real picture of what's happening in people's lives but this project can't be accused of that because of the strong element of case study of the photographs of the experience of people's lives. I think it's clear that it puts into high definition for all of us quite literally the linkage between poverty and terminal illness. I also want to at this point thank the project team for that work and for the unique method of research. So thank you to the University of Glasgow researchers, Dr Naomi Richards and Dr Sam Quinn, the University of Auckland researcher, Professor Merringott and Marie Curie head of research and innovation, Dr Emma Curdouth. I want to additionally thank Margaret Mitchell who photographed the participants and created the images that have formed the basis of the study. All of the hard work, the expertise and above all I think their care and compassion to present this issue has allowed us to shine such a bright light on this very important area. It would also be wrong not to recognise and thank at this point those who were at the heart of the research, the participants. I can't begin to imagine what it must be like to be diagnosed with a terminal illness. To have that put upon you when you are already experiencing huge challenge and difficulty in your life. And then to follow up by inviting people into that moment to document it, to photograph it, to study it and publish it. That's an incredibly brave decision and one that couldn't have been easy for many. So thank you to those who allowed their stories to be told and 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 and I got the opportunity to meet a number of the people who were being supported and cared for there and it really helped me on what I had seen in the exhibition and I met many people who were perhaps in similar circumstances and I met one man in particular who reminded me a lot of Max who is one of the participants in the study. His story, Max's story was typical of many and I think is as informative as any other. He was an army veteran with previous experience of homelessness and trauma. He desperately wanted to remain at home with the freedom that we all crave and that was very difficult being a flat up four flights of stairs lacking in other support provisions in the accommodation and anytime his cancer symptoms got too difficult to manage he was admitted to the hospice but that was even more difficult for him because he felt he was being taken away from his dog Lily who he dearly loved and out of his own community where he felt comfortable and secure. Max's story I think leads me nicely on to the asks and calls for action which the research makes. Max would have benefitted 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 but those settings are often inadequate and accessing 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 upon all of us to work to make that an option for them. I am of course conscious of the time allotted Presiding Officer but there are of course other substantial and important recommendations in their report which I know colleagues will want to reflect on in their own contributions not least the cost of energy and the cost of being able to heat a home and have life-sustaining equipment if that is what is required not least the money that is available to support people and their carers. I do hope that when the minister closes she will perhaps reflect on some of those asks directly and give us a sense of what the Government is going to do to push this agenda forward and indeed I hope she will meet with me, Mary Curie and the researchers in order to discuss these in more detail. Presiding Officer we must come to us all but it does 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 and I think that is the very minimum we would expect for ourselves and for everyone in our society and I hope that this debate today the research project and going forward from here we can reflect on that and make a real difference. Thank you Mr Opin I now call Ruth Maguire to be followed by Thank you Dying is not something that most of us want to talk about but as policy makers we have a responsibility to all our citizens from cradle to grave I think that the cradle bit is easy to talk about doing all we can to make sure that every life born here is in safety, comfort and love it's not everything but the box of essentials to help parents keep each new Scottish baby warm and safe the baby box is a good reflection of that wish for an equal start the end of life where maybe not as good at maybe it doesn't have the same feel good factor but we can't ignore inequity at the end of life we must have our eyes open something that the joint study and exhibition Dying in the Margins Glasgow and Marie Curie helps us do very well I am very grateful to them for their work and particularly in all of the research participants and I welcome everyone to the gallery this first of its kind study examining barriers to and experiences of dying at home for people living in poverty shares the direct experience of participants through Margaret Mitchell's images and the participants own words it is hugely powerful I am grateful to Evelyn Tweed for sponsoring the exhibition here in Parliament I also want to thank Paul O'Kane for securing cross-party support and bringing this important topic to our chamber giving us all the opportunity to contribute to the important debate I thought a speech was very thoughtful and a good start for us Members' debates in here can be quite small affairs particularly after FMQs I would want everyone particularly those in the gallery to know that this can be the start of something and not just an event in itself Paul in opening spoke about Max Marie's story struck me I think maybe perhaps because she was the same age as I was and I would reflect on the quite different experience that I had personally having a serious illness to that of Marie Marie specifically spoke about the many costs getting to her treatment I was fortunate to have a family member move in and take the specific task of running me to hospital that made treatment a lot easier In my area in Ayrshire we have an excellent charity called Ayrshire Trun and Cancer Care who provide that service for people who don't have it but I think it reflects that kind of I don't like the term postcode lottery but the different experiences relying on specific location charities to make sure that patients can fully take part in their treatment it would be interesting to hear the Government's reflection on that I would say I support all the asks in the Marie Curie briefing I think there are things as well as actions for both Governments to do in terms of finance there are probably policy things that can be done more promptly Paul spoke about the aids and adaptations again I would reflect that that's something that action could be taken on now personally I've had experience of a constituent coming for assistance where she'd been injured falling down the stairs she's had the aid and adaptation done in her bathroom but not on the stairwell yet making recovery really quite challenging we can all imagine how bad that would be it's a very short speaking time and I know we want to hear from everybody so I would just say that I will commit to work with others on this topic and certainly we'll go to my local authority and health and social care partnership and see if there are those policy changes that can happen promptly and make people's lives a bit better thank you thank you Mr Gwia could I remind all members to check that those who are seeking to speak in the debate that they have in fact pressed the request to speak button if they could check that would be helpful Sandra Gawhani to be followed by Collette Stevenson Dr Gawhani thank you to Paula Cain for securing this debate and I wish to draw members attention to my register of interest as a practicing NHS GP where I directly treat people with terminal illness only two things are certain in life death and taxes and while there's often no holding us back from talking about his Majesty's Revenue and Customs most of us are not very good about discussing death have we told our kids our wishes do we know our parents wishes or even use the words death and dying instead of a euphemism death is a part of life and we all want people to have a dignified death the space to get their affairs in order to say their goodbyes to die peacefully and in pain but sadly not everyone in Scotland is at peace when they die and for those in our communities who are living with a terminal illness at a time when they're at their most vulnerable the financial impact of their prognosis can drain a family savings for many greatly increasing the risk of falling below the poverty line for people with little or no means or who've lost their job because they're sick terminal illness is not an equaliser and the risk of poverty is particularly pronounced for women are Scots from minority ethnic communities and parents with young children some even incur deaths that will be passed on to their loved ones when they are dead according to Marie Curie research in 2019 of those Scots in the last year of their lives 26% died in poverty that's 2800 working age Scots the charity crisis tells us that in 2021 250 people in Scotland died homeless stats like this are important as they provide a sense of scale but behind every percentage point is a person family, friends the cost of dying exhibition here in parliament provides such lived experiences with poignant case studies often worrying about how to make ends meet or live the remainder of their lives in dignity and I'd like to congratulate the University of Glasgow and Marie Curie research for delivering an impactful dying in the margins project the project illustrates the profound effect that socio-economic circumstances can have on the end of life experience and in parliament today we welcome friends and family who participated in the dying in margins project Max's friend Derek Stacey's husband used daughter Nicola amongst others Deputy Presiding Officer the question for us in this chamber is how do we respond in concrete terms to this study in areas of devolved policy this policy, this parliament can act and Marie Curie provides a list of suggestions that are well worthy of consideration and these include financial support for childcare of all terminally ill Scots so families can make them most of the time they have left together improve financial support for carers so they can focus on looking after their loved ones and making them most of the time that they have left together not worrying about finances ensure terminally ill people are offered timely and affordable adaptations to their property so they can live the rest of their lives at home if they wish as for local authorities they can review the eligibility for council tax support housing support as parliamentarians we must always strive to do better having choice control and the comfort of a dignified death is crucial to the terminally ill who have already been robbed of so much by their illness we can do more to help our fellow Scots help them make memories with their loved ones and live as well as they can for as long as they are able to thank you I now call Collette Stevenson to be followed by Karen Wachan I am grateful to Paul Cain for bringing this debate to the chamber and I want to pay tribute also to Marie Curie and the University of Glasgow for their dying and the margins project and of course to everyone who took part the research and the associated photography exhibition the cost of dying highlight in such a moving way the experiences of living in poverty with a terminal illness Presiding Officer there is a strong link between premature death and poverty and I could see lots about the consequences of the UK Government austerity on public health and the role of our economy in preventing excess mortality however for those with a terminal illness we must also focus on the here and now and ensure that they have the support they need to have the best quality of life possible Organisations across the country including Marie Curie offer vital support to people with a diagnosis of a terminal condition and equally to their loved ones one key issue is tackling the double burden of income loss and increased cost of living expenditure brought on 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 in this situation and indeed their carers I would encourage people to contact their local money advice service or MSP to ensure 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 and the margin work notes part of this and particularly nowadays is the cost of energy The Scottish Government's energy minister Gillian Martin wrote to the UK Government this week in terms of the need for a new social tariff mechanism for energy windfall taxis which would support the people who need it most to many people are struggling from sky high energy bills which are pushing more people into fuel poverty and the UK Government must do more for someone with an illness or disability that are additional challenges and as Mary Curie points out people with a terminal illness often start to spend more time at home and also feel colder due to their symptoms which means a greater need to heat their home too In fact research shows that average energy bills almost double following a diagnosis of motor neuron disease We hope that the UK Government listens to the calls for a social tariff to help with the energy bills for those who need it most and that this is announced soon So to conclude I commend all the people who took part in the dying and the margins research I was certainly moved by the exhibition held in Glasgow and that is also in display here in Parliament this week Sadly most of them are no longer with us but I hope their actions help us to ensure we deliver the best possible support for people to prevent more of our citizens from dying in the margins Thank you Thank you Ms Stevenson and I now call Carol Mocken to be followed by Stephanie Callaghan Ms Mocken Thank you to my party colleague Paul O'Kane for bringing this very much overlooked issue to the chamber I am so glad I had the opportunity to view the dying and the margins exhibition at the Mitchell Library in Glasgow earlier this year I as others have said found it incredibly moving and although heartbreaking in many ways it is necessary that we are confronted by these images of people dying in poverty I hope that all MSPs have had the opportunity to see it even the smaller exhibition that has been mentioned and indeed been able to read the report The stories highlighted by these exhibits are so often left untold and the individuals affected naturally feel that they are not being listened to at a time when the last months of their life are upon them An exhibition like this provides them with an outlet and shines a light on the warmth as well as the sorrow of the daily lives of those living with terminal illness Like so many things across the course of our life the process of death is influenced by the poverty and inequality experienced by so many It is the root of the injustice that permeates our society and that injustice can sustain from the cradle to the grave for many I simply cannot accept that and that is really what drove me to speak in today's debate We have to do more to stop so many having so little whilst the few have so much The rich can often afford to stay at home and receive daily care directly in the place that they have lived and prospered but for those that have suffered through a life of struggling to make ends meet often no such options exist and their life ends as it proceeded in a sense of powerlessness I find this to be the final injustice and then one that we should do everything to limit Everyone deserves a pain free and peaceful death as possible surrounded by those that love them in a place that comforts them and that the choice is theirs not dictated by what can be afforded I am thankful of course to the Maricuri for all the dedicated support that they provide to people but often the cost of dying takes over and I think the use of the images enhances the words in the exhibition and what we have spoken about here I was touched too by some of the people in the exhibition I'm deep and of course by Max and when I saw that image and I read the words I thought good on Max and he did what he wanted to do and we should be supporting that If our economy did not simply forget about people like Max this would not be the case but for many of those in power it's much more convenient to simply pay no heed to the poverty that blights our society but they forget that it could happen to any one of us and then we would wish for compassion and fairness let me be clear it is my belief that we do not have an economy that works only for the rich but rather ensures everyone in society has the means to live and die in dignity I'm conscious of time the clock is not aware but I want to make sure that we do all look to the conclusions of the report and make sure as other members have said we all work to make sure that we get these things in place I also thank Paula Keane for securing today's debate I think it's affected many of us deeply and it's not often I'm distracted during the FMQs but certainly it happened for me today when I was thinking about today's debate After visiting the Costa Dine photography exhibition I felt really compelled to speak today and colleagues have already raised serious issues around energy bills social security support timely and affordable housing adaptations and I trust the minister will address these when she speaks later on today The Dine and the Margins exhibition was a deeply moving experience and that visual insight into the harsh realities that people face at the end of their life in poverty was really really profound I'm sure I wasn't the only one that was fighting back tears and felt really quite overwhelmed by the struggles participant faced and also really quite humbled by the things that they showed to So today I would like to thank Marie Curie and Glasgow University especially Dr Emacher Duff Dr Sam Quinn and Ellie who I spoke to that day but most of all I want to thank all those who shared their intimate stories and experiences because they wanted to make life better for others so I thank them for that brave and compassionate act for their insight and for creating such a powerful legacy Presiding Officer, we bear a responsibility to ensure every citizen enjoys a fulfilling and dignified life right up until the end but years of harsh austerity and the cost of living crisis have made it a really harsh narrative for the most vulnerable in our society who face a disproportionate consequence of systematic poverty and the stark realities highlighted by the population mortality impacts of the rising cost of living in Scotland report published by the British Medical Journal and it talks about a projected rise in premature deaths with the rate being four times higher in deprived areas and if we are to fundamentally change the experience in the final years of life then we must do more to end poverty in every other year of life We've heard quite a bit about the costs of terminal illness it can happen to any of us but the experience loved by those in poverty in their final moments is starkly different We've already heard a lot about the costs associated with terminal illness and how it pushes families into further hardship and one of the quotes that I remember from the exhibition came from a man deep he 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 made it a significant financial burden on his mum who became his full-time carer and it's not unusual that family members need to reduce their work hours or quit their jobs to become those full-time caregivers so you're compounding that loss of income with the additional costs of terminal illness which means it's acting as a double burden on families We've also heard from Stacey who should have been reserving her energy but she was fighting tirelessly for a year to access suitable housing and Stacey did find a home and was then relocated to a hospice and her partner just weeks afterwards after Stacey passed away was asked to move out of the Glasgow property and I'm sure we can all agree that that just is not right and surely we can look at doing something to avoid that Scotland must continue to prioritise social security to address economic inequalities to eradicate poverty and to build financial security for all and there are some progressive policies such as the minimum income guarantee that could play a significant role so in closing I just want to say that nobody should face a relentless battle to meet their basic human needs and no partner should lose their home or go on with losing their soul mate and I do know that while the Scottish Government is committed to eradicating poverty that today's debate highlights that there's a very long journey ahead and we owe it to all of the research participants their families and citizens right across Scotland to fully embrace this research to really take note of it and to use every devolved power that we have to ensure that everyone can live and pass with dignity, respect comfort and with choice Thank you I now call Beatrice Wishart to be followed by Richard Leonard Thank you, Presiding Officer and thank you to Paul O'Kane for bringing this important debate to the chamber today I'd also like to take the opportunity to thank all those involved in the research and production of the Dying in the Merchant study and especially thank all the participants sadly some no longer with us We can only make sure we use their bravery in participating in this project to improve the experiences of others and leave a lasting legacy Thank you also to Marie Curie for bringing the exhibition to 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 CPG on poverty I'd like to stress that we need to see an end to poverty in life and we must not forget or lose sight of those at the end of life and this project will help ensure that we don't Yesterday evening in the chamber we spoke about the impact of pancreatic cancer and just how swiftly conditions can progress One of the calls from the Dying in the Merchant project is to ensure terminally ill people are offered timely and affordable adaptations to their property From experience relayed to me I know that this can take far too long It can be a long running saga soaking up time and energy for those facing the end of life rather than time spent with friends and family ensuring a quality of life living well and making memories with loved ones Options to put people from their homes into an already adapted property at end of life might be a solution on paper but an unwanted disruption for those wishing to stay in their home where they've lived for years and their families Some creative thinking around prioritising or fast tracking adaptations for those at the end of life must be possible 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 For those living in poverty the cost of living is hugely exacerbated already squeezed budgets put simply it costs money to be unwell In rural and island areas these costs are a greater proportion of budgets We need a change in the criteria to include those at the end of life to ensure increased support to mitigate high energy bills News yesterday assured us that inflation has now reduced but that figure on a spreadsheet does not mean milk, bread and other basics will fall in cost Heating, washing and medical equipment are used more often by those living with medical conditions and at the end of life and as the Marie Curie briefing highlights met, including 41 per cent on carers allowance Many carers never consider themselves carers being partners, parents friends and children and we should recognise that children of younger working age terminally ill people are vulnerable too Carers contribution should not be diminished their supportive role is critical to the person they care for and for wider society There needs to be a comprehensive support for those at the end of life and support for their carers and once that person is no longer with us support must be available for families and carers after life costs can have a huge impact on top of the emotional cost To conclude this is about dignity comfort, security, respect poverty should not be a trap for anyone at any stage of life Thank you I now call Richard Leonard to be followed by Bob Dorris Mr Leonard Can I thank my friend Paul O'Cain for tabling this motion This study by the University of Glasgow and Marie Curie supported by the ESRC led by Dr Naomi Richards is all the more important because we know that life expectancy in Scotland is not going up it's coming down 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 fueling premature mortality that people are dying before their time that much of this is hidden socially invisible is out of sight and it is 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 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 that is hiding poverty in Scotland today which strips too many people of human dignity of basic human rights at their time of life but at their time of death as well 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 so I say to the minister it is not good enough for us to simply denounce this the question for us 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 on support for frontline workers what are we going to do to build a compassionate society a decent society a 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 to live in poor and overcrowded housing which has a direct link to poor health, physical and mental as well so 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 an 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 only so rich because the poor are so poor that there is a huge concentration of power in the hands of a few so we need to change this at its very root so we need power to win not just equality of opportunity but equality of outcomes for people not just to live to survive but to prosper, to flourish this is about the standard of living but about the standard of dying as well it is about social cohesion and solidarity about the equal worth of all and above all else it is about challenging and changing the assumptions of the existing social order and replacing them with an ethical a better and I would argue a more socialist alternative Thank you Mr Leonard and I now call Bob Doris Thank you, Presiding Officer I commend Paul Wacad for bringing this member's debate and dying the margins to Parliament this afternoon and of course my thanks to Marie Curie and to Glasgow University for their work and capturing these stories images, the lived experience of those with terminal illnesses and conditions is the approach at the end of life but most of all to those who participated in the study to those who were approaching end of life and their loved ones for sharing their stories with openness, with incredible dignity and courage I was very lucky as a few of us were to meet the loved ones or some of those who participated in the dying and the margins study earlier before First Minister's questions and I saw those point photographs of participants earlier this year at an exhibition during the summer in Glasgow's Mitchell Library as the convener of the Scottish Parliament's cross-paragraphed part of care and with Marie Curie based my constituency I've got a particular interest in this area but we must all do what we can to ensure that the last few weeks and months of those living with terminal condition and approaching the end of life has as much quality of life quality of life and is comfortable and dignified as possible we must do all we can to show that people are not dying in the margins now inappropriate housing has been mentioned and it's clear, it's a clear theme from dying in the margins and I know from my constituency caseloads the challenges that can be presented by being unable to get swift and suitable adaptations as you approach the end of life Indeed I remember a member's debate I held in this place regarding loads with MND and securing such adaptations I think Marie Todd was the minister at that time and the constructive work we're trying to take forward in relation to that so I again request consideration for a fast-track process to be established for those approaching end of life lack of adaptations can lead to social isolation compromise safety and dignity and lead to loved ones ending up in hospital or a hospice as opposed to ending their days at home and a minder of Max from the study in such circumstances and Max's friend who was fortunate to meet earlier was quoted as saying he did a runner from the hospice basically to get back to his dog that made me smile actually because my father tried to escape from a hospice just a week or so before he died he didn't succeed but he was actually proud that he had the energy to do so so that really landed with me in a very personal level it's also evident from dying in the margins that even when a housing move is secured it's often during the last few days of life I saw that from my constituency case work as well and we saw how loved ones often do not have security of tenancy when they are bereaved and the impact this has on them highlighted strictly again in the study when you just lost his wife Stacey our government has a housing bill coming to this parliament next year and this may be an opportunity to address some of these issues I want to work in partnership with government to make that happen I also wrote Mr O'Keyden's request to the meeting I would look forward to attending also I think the cross-party party of care should have something fundamental to take this forward on a cross-party basis there were clear financial issues running through the report in relation to terminal conditions and calls in both Scottish and UK governments let me offer just two reasonable requests that I think were made can we do more in Scotland to support the energy cost of those living with terminal conditions that additional cost sometimes running medical equipment at home unfunded by the NHS or by local authorities and there are other asks in relation to the cost of living to the Scottish Government but can we just have a wee look at that again but also to the UK government if I was diagnosed with terminal condition in this place my pension would be automatic and I would get a lump sum people diagnosed with terminal conditions in the UK they should get their UK pension early and my constituents are too many people who pay into a pension pot all their life and never draw out a penny because of life expectancy and that has to change also because of the time given that the time is tight can I finish off more by saying this is not the end of the story for those dying in the margins some have now passed but the legacy will live on it's up to all of us in this place to make sure that that happens thank you Presiding Officer thank you Mr Doris and I call on Minister Jenny Minto to respond to the debate minister thank you Presiding Officer I too would like to thank Paul O'Kane for instigating the motion for this debate and to those in the chamber for their very contributions I too had the I'm going to use the word pleasure because it was a pleasure the honesty of the photographs and the stories really really hit home when I visited the exhibition at the University of Glasgow there was levels of serenity and acceptance as well as the colourful clutter of Liz's flat and as everyone else has mentioned Max's Lily the dog and his great escape to be home with her and I think the other one that really struck home with me as well was Andy's post-it notes and the connection that that gave him with his daughter and granddaughter very very powerful so I would really like to take this opportunity to personally pay tribute to the individuals and their families who took part I was truly inspired by their courage and strength and in the sharing of their stories through the most difficult times of their lives and I think having had conversations with the researchers sadly I haven't yet met any of the family but given Paul's request I'm very happy to do so I think it was the recognition that you were all doing this to try and change things and I thank you very much for that as Paul Cain said to shine a bright light on the situation 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 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 and I think Ruth Maguire's speech really emphasised this to talk openly about planning ahead for when our health changes and about dying and bereavement and I'm sure we can all reflect on conversations we wish we'd had with our own family members and I know I'm certainly in that position I'd also like to reflect on what Carol Mokhan said about affordability and I had a long conversation with a celebrant who emphasised that and the importance of a funeral in part of the grieving process one way to start having these 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 the care and support they subsequently receive honours that plan through the new palliative care strategy which we're currently developing we're 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 this 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 this support will be available to anyone who needs it regardless of age, illness or socio-economic 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 this government ensures that adult disability benefit applications from people with a terminal illness are fast tracked to provide them with the support they are entitled to as quickly as possible as collect Stevenson noted we also ensure that those who are terminally ill receive the highest rates of assistance that they are entitled to with no award reviews they are eligible for this 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 this my government is investing over 88 million per year in local carers support and charity carers act funding the Scottish Government also recognises the extra pressures on people caring for someone with a terminal illness and we have therefore made sure that they have accelerated rights to supporting 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 a billion pounds in 24-25 this includes investment to increase the value of our Scottish child payment funeral support payment and all disability and carers benefits by inflation from April 2024 and at an anticipated investment of around 300 million we are also making 83 million pounds available for discretionary housing payments this year to fully mitigate the bedroom tax to fully mitigate the bedroom tax to mitigate the benefit cap as fully as possible and to mitigate against other UK Government welfare cuts we are investing to deliver more affordable and social homes with 3.5 billion pounds being made available over this parliamentary term and we are taking forward a review of the current housing system which was raised by Paul O'Kane and Bob Dorris and possibly more and we will make recommendations on how best to improve and streamline the system I am aware 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 environment continually urges and it has done so again this week the UK Government to take action using the financial and energy market levers they have just as we are doing within our limited powers and fixed budget that is why we continue to call on them to urgently introduce a social tariff mechanism that will provide a much needed safety net for vulnerable consumers including disabled and those who rely on medical equipment at home I've got an awful lot more to say but I'm very aware of time so if you're content I'll put this in a letter to everyone that has spoken so to close I recognise there is more we can all do and as I've said we'd be happy to meet with Paul O'Kane I'd like to conclude by again thanking those who allowed their stories to be told and also by thanking the many people from across all sectors who deliver palliative care palliative and end-of-life care the commitment and dedication that this takes often in extremely challenging circumstances cannot be underestimated and I would like to finish by offering my personal thanks for all that you do thank you minister and thank you to members for their co-operation in sticking to their allotted speaking times and that concludes the debate and I close this meeting until 2pm thank you