Meeting of the Parliament

Meeting date: Thursday, December 21, 2023

Official Report 860KB pdf

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Marie Curie (75th Anniversary)

We are in the home straight.

The final item of business is a members’ business debate on S6M-09975, in the name of Bob Doris, on 75 years of Marie Curie. The debate will be concluded without any question being put.

Motion debated,

That the Parliament congratulates Marie Curie on its 75th anniversary; recognises that, since its inception in 1948, Marie Curie has provided palliative and end of life care and support to millions of people affected by terminal illness and those dealing with dying, death, and bereavement across the UK; understands that Marie Curie works closely with NHS Scotland and is the largest provider of palliative care services for adults outside the NHS; believes that access to appropriate palliative care services is a key element of ensuring the best possible end of life experience; welcomes what it sees as the invaluable contribution of the Marie Curie nursing and volunteer services and its two hospices in Edinburgh and Glasgow; commends its most recent report, How Many People Need Palliative Care?, which was published on 6 July 2023 and maps palliative care need across the UK into the late 2040s; understands that, according to the report, palliative care need will increase by more than 25 per cent across the UK by 2048; notes its prediction that the number of 85 year olds living in Scotland will increase by 90 per cent by 2048 to 257,000; considers that, while welcome, this presents a challenge to palliative care services as the number of people with comorbidities in need of complex person-centred care and pain management at the end of life will also increase; understands that Marie Curie is the largest charitable funder of palliative and end of life research; commends the work of all at Marie Curie, including its clinical staff, support services and volunteer helper services, who work to ensure that everyone has the best possible end of life experience, and looks forward to further developing Scotland’s public policy and delivery framework to most effectively meet that goal.  

13:49  

It is a privilege to lead the final debate in 2023 of Scotland’s Parliament to congratulate Marie Curie on celebrating its 75th anniversary this year.

That we have such a parliamentary debate just before Christmas is fitting. As many of us head off for our Christmas break, the work of Marie Curie staff will continue undiminished. They will provide dignified, respectful, caring and compassionate palliative and end-of-life care in a hospice setting and in people’s homes over the entire holiday period. That will not stop. Marie Curie staff and its army of volunteers and fundraisers deserve our heartfelt thanks and support for all that they do, not just over the festive period but all year round. I will say more on that later.

Our thanks to Marie Curie must reach back some 75 years since its inception in 1948. Across the UK, Marie Curie has provided palliative and end-of-life care and support to millions of people affected by terminal illness and those dealing with dying, death and, importantly, bereavement. Marie Curie serves the communities that I represent with hospice-at-home services across Maryhill and Springburn and beyond, as well as at its inspirational hospice at Stobhill.

I use that word “inspirational” quite deliberately, and I extend the description to the wider hospice movement, including St Margaret of Scotland hospice in Clydebank, which showed great love to my father in the last weeks of his life. Marie Curie is inspirational and unflinching in the love, care, compassion and support that it offers people approaching the end of life, as well as their families.

Marie Curie has come a long way since its first home was opened in 1952 at the Hill of Tarvit in Cupar in Fife. Initially, it provided residential care to cancer patients and ran a home nursing service, with clinical advice provided primarily by general practitioners.

Marie Curie’s willingness to innovate, change and adapt has been crucial over the years, which is another theme that I will return to. It saw significant change in the 1980s, moving away from providing long-term nursing care to cancer patients and becoming increasingly focused on palliative and end-of-life care in communities and hospices. It was caring for more patients, who were more seriously ill, for shorter periods of time. Medical care was and is led by consultants in palliative medicine, and specialised services are provided by allied health professionals. Marie Curie hospices also developed a wide range of day services, reaching out into their communities.

The 2000s witnessed further change and innovation. Marie Curie committed to providing palliative and end-of-life care to all people diagnosed with a terminal illness, irrespective of their diagnosis, and, in 2014, to reflect that, it removed “Cancer Care” from its name.

Marie Curie has two hospices in Scotland: the one in my constituency and another in Edinburgh. However, it is a truly national service and, one way or another, offers hospice-at-home services across 31 of Scotland’s 32 local authorities.

Its report from July entitled “How many people need palliative care?” demonstrates why we need Marie Curie and others more than ever. We need their expertise, dedication and innovation. Palliative care needs are set to increase by more than 25 per cent by 2048, and modelling work suggests that the number of 85-year-olds living in Scotland will increase by 90 per cent to 257,000 by 2048. We should celebrate and welcome that scenario, but we must also address the clear service and funding challenges that will be presented to government at all levels, as well as to the wider public sector and all delivery partners that support palliative and end-of-life care.

The growing challenge of supporting all those with multimorbidities who will be in need of complex person-centred care and pain management at the end of life is daunting, but it should also be cherished. Offering love and ensuring dignity and quality of life to all in such situations is the core business of a humane, caring and compassionate society.

I said earlier that I would return to the issue of the support required. I welcome the Scottish Government’s recently announced strategy steering group to oversee the development and delivery of a new palliative and end-of-life care strategy and associated work programmes. We can all agree with the principles that will underpin the new strategy, including equitable access to general and specialist palliative care services and the development of a fair, transparent and ethical commissioning and funding process. Marie Curie and Scotland’s network of hospices and hospice-at-home services will be key partners in delivering on those ambitions, and they will also be key partners in developing the innovative new models of palliative and end-of-life care that will be required, as Marie Curie has always done since its inception in 1948.

I want to offer some suggestions to support that innovation. The debate on pay pressures and funding gaps in the hospice sector has been well rehearsed in the Scottish Parliament in recent months. The £16 million gap that has been identified has been driven, in large part, by the hospice sector trying to keep pace with the very welcome and significant pay awards that the Scottish Government has made to national health service workers.

Any new sustainable funding model for hospices must have an in-built mechanism by which NHS pay awards in Scotland recognise the clear and obvious knock-on effects on pay pressures in the hospice sector. That should form part of any ethical commissioning and funding process that is developed.

I note that some of the communities that I serve have significant levels of deprivation. Areas of deprivation are more likely to have a higher proportion of people living with multimorbidities, and doing so at an earlier age; have lower levels of healthy life expectancy; have less financial resource; and, often, have more precarious support networks. That must be taken into account when we map out how to deliver the equitable access to general and specialist palliative services that we are all committed to.

Perhaps we need to start being explicit in legislation about a right to palliative and end-of-life care, as that might focus minds and drive the budget decisions of the people who are tasked with designing future provision across Scotland. I ask the minister to consider what opportunities are presented in the proposed human rights bill and the National Care Service (Scotland) Bill, which will progress through this Parliament, to do just that, and I ask her to work with me, Marie Curie and others to achieve that end.

I conclude by congratulating Marie Curie on its 75th anniversary, and I end as I began, by passing on my heartfelt thanks to all those who offer such wonderful palliative and end-of-life care. Of course, I also wish everyone a merry Christmas and very happy new year. [Applause.]

13:57  

It does not seem that long since I hosted the round-table session on the dying in the margins study by Marie Curie and the University of Glasgow. That was back in November, and there was a members’ business debate on that study in the chamber. A few weeks after that, I led a members’ business debate entitled “Charitable Hospice Care to Meet Future Need”.

I see many familiar faces in the chamber. I thank Bob Doris for bringing the subject of hospices back to the chamber at what is perhaps a more poignant time of the year, when it means more to most, and I am delighted to have the opportunity to speak on the subject again.

Marie Curie has done excellent work over the past 75 years, and it continues to provide vital services to those who need palliative and end-of-life care. It supports millions of people who are affected by terminal illness and those who are dealing with dying, death and—importantly—bereavement across the UK.

Marie Curie is the largest charitable funder of palliative care research in the UK and the largest third sector provider of palliative and end-of-life services for adults in Scotland. As Bob Doris has said, there are two Marie Curie hospices in Scotland—in Edinburgh and Glasgow. In 2022-23, Marie Curie supported more than 8,100 people in Scotland; in the same year, around 8,815 people died in the Lothian region, 90 per cent of whom had a palliative care need. Hospices are critical in meeting that need. Indeed, across the region, Marie Curie hospice care-at-home teams made 4,060 visits to 672 terminally ill people.

In November, I visited the Marie Curie hospice in Fairmilehead. When I entered it, I was immediately enveloped by a calmness and serenity that gave me a sense of wellbeing and care. I was given a tour of the facilities and had the chance to speak to members of staff. Early Marie Curie homes were housed in converted buildings that were not ideal for the type of care that they delivered; the hospice at Fairmilehead, which was opened in 1966, was the second purpose-built building that was designed and built by Marie Curie in the UK. It was designed to care for those who were seriously ill with advanced conditions. In the past year, the Marie Curie hospice service in Edinburgh and West Lothian has supported a total of 1,690 patients with in-patient, out-patient and, importantly, community and day therapy services.

I think that many people have preconceived ideas about hospice care. Most of Marie Curie’s work is done in the community, with the majority of hospice care being delivered beyond hospice buildings and walls and out in people’s homes. That gives people the option to die with their friends and family, at home and supported by teams of experts. Marie Curie has a fast-track team that helps people with tasks such as washing, caring and showering as they get close to the end of life. Crucially, it keeps them out of a hospital setting; the team is essential to keeping people in the right place and offers family support to relatives.

It was disappointing that this week’s budget made no mention of the support needed by hospices to address the £16 million deficit that the sector faces. The rapidly growing need for palliative care in Scotland means that the vital contribution made by hospices will become increasingly important, and I hope that the issue will be considered in future.

In closing, I echo what Bob Doris said about Marie Curie’s inspirational work across the country, about how supportive it is to families and those at the end of life and about how innovative it continues to be. I thank Marie Curie for 75 years of care and wish the charity well in the future.

14:01  

I thank Bob Doris for securing the final members’ business debate of the year. I reiterate my thanks to Marie Curie as it celebrates 75 years of palliative care, research and end-of-life services across the UK.

The work that Marie Curie has done, and continues to do, to support millions of people affected by terminal illness, death and bereavement is absolutely invaluable to our communities and our healthcare system. However, if Marie Curie is to have another 75 years of success, urgent Government support is required.

As Bob Doris said, we know that demand for palliative care is set to increase over the next 25 years and that, by 2040, two thirds of all deaths in Scotland will be in care homes and hospices. The unmet need for palliative care remains significant, with one in four people unable to access support at the end of life. As costs have increased, there has been an inevitable decrease in the amount of activity that Marie Curie and other charitable hospices can offer.

As a result of rising inflation and the pay uplift for NHS nurses, palliative care providers have been left with a £16 million deficit. They have had to increase their nurses’ pay to stay in line with the NHS and avoid losing staff. That is entirely linked to action taken by the Scottish Government, yet there was no offer of any remedial funding in Tuesday’s budget. I hope that the minister will reflect on that.

I thank Jackie Baillie for giving way, partly because that allows me to place on record my thanks to colleagues for signing the motion that allowed this debate to go ahead.

Does Jackie Baillie agree that money is in very short supply and that we need a sustainable future funding model that takes all that into account? Does she agree that we need not a short-term solution but a long-term strategy?

On this occasion, I am happy to agree absolutely with Bob Doris. There is a need for something now to help hospices over this hurdle but, as Mr Doris entirely correctly suggested, there is a need to build that in.

Marie Curie and other hospices need more than warm words of congratulation; they need the sustainable long-term funding that Bob Doris and I agree on. The service simply cannot be expected to provide care as demand rises in the coming years when current funding arrangements cover less than 40 per cent of their costs. We all agree that palliative care services are important, as are the people who work in hospices and palliative care. That work is two-thirds funded by donations from the people, companies and trusts that decide to support the sector.

I agree with Bob Doris again in paying tribute to St Margaret of Scotland hospice, which helps people in my constituency, and I also pay tribute to Children’s Hospices Across Scotland, which provides care for children with life-limiting illnesses.

If the Government truly values Marie Curie and other hospices in Scotland, it needs to support them properly and should ensure a minimum of 50 per cent statutory funding for providers. It should also assess the impact of future NHS pay awards on the hospice sector, to ensure that funding is provided to allow hospices to match NHS pay awards for their staff. Failure to do so will widen the gap between those who can and those who cannot gain access to palliative care, which will put extra strain on the NHS and cost the taxpayer millions of pounds.

Just as every person should be born with the very best start in life and receive healthcare throughout their life as and when they need it, so each and every one of us should have a right to die with dignity and care. The Scottish Government has a duty to prioritise palliative care staff and services in line with the work that is done in the NHS and social care. The Government must do more to support hospices such as the Marie Curie ones. The organisation has done so much for the people of Scotland for the past 75 years and, for that work, Marie Curie has our heartfelt gratitude.

14:06  

I join my colleagues in congratulating Marie Curie on its 75th anniversary. I am grateful to Bob Doris for raising that important milestone in a members’ business debate.

Death is a part of life, and it is important that the fairness, equality and dignity that we aim to provide in life are extended to those who are approaching death. Marie Curie’s work over the past 75 years has made that a reality for many.

In its capacity at the front line, Marie Curie has offered crucial insight into the needs and challenges of those it cares for. I support its calls for more research to better understand the rise in demand that we face. Scotland’s population is ageing and the proportion is higher in rural and island communities, so a disproportionately large amount of future palliative care is likely to be required in those areas. However, research that was published in The BMJ found that terminally ill patients who live in rural and remote areas are at significant risk of being hidden and forgotten. I would like to see further research into the challenges that they face.

Marie Curie highlights the four As—availability, accessibility, accommodation and affordability. Availability of resources—from specialist teams and social care workers to equipment and technology—is more limited. Accessibility challenges abound because of the lack of public transport, the poor road conditions, the need for accessible vehicles and the long distances. Accommodating the needs of terminally ill people can be more difficult because of a lack of accessible housing. On affordability, being terminally ill costs an individual between £12,000 and £16,000 a year on average. That is compounded by the rural premium, which puts terminally ill people in rural communities at much greater risk of poverty.

Applying to rural settings policy that is designed in and for urban areas does not work. Research is much needed to better understand how we can overcome those challenges. Thank you to Marie Curie for all the research that it has done over the years, which has been of extremely high quality.

I was pleased to sponsor the exhibition about the dying in the margins project and photographs from Marie Curie and the University of Glasgow. I am sure that members will all agree that that was a powerful piece of work. The loved ones of the participants who came to Parliament were generous with their time. They spoke to me about their loved ones participating in the exhibition and said that that was a legacy.

It is up to us to ensure that the legacy is one of change and improvement. I call on the Government to support more such research, to ensure that no one is forgotten or left behind and to ensure that demand is met. Finally, I wish you all a very merry Christmas.

14:09  

I want to start by paying tribute to and thanking Bob Doris for bringing this debate—the final debate before recess—to Parliament and for his work chairing the cross-party group on palliative care. It is important to recognise the cross-party working that takes place in the Parliament on this issue.

As we look forward to Christmas, which is just round the corner, it is quite telling that many families will be using the services that our hospice sector provides. Marie Curie will be at the heart of that, especially for many of my constituents in Lothian. I put on record our thanks to Marie Curie at what will be a difficult time but what must also be a really good time for people who are celebrating Christmas—some know that it might be their last Christmas. The work that hospices will be doing to make sure that many wishes come true for people this Christmas is incredibly important.

Across Scotland, what our hospice sector does day in, day out, 24 hours a day, must be recognised and understood. I put on record my thanks to Marie Curie and our whole hospice sector for what they do.

However, as has been outlined—I associate myself with what other members have said—we know that there is huge unmet need for palliative care in Scotland. Despite Marie Curie and our hospices trying to meet that need and fill that gap, there is unmet need, because around one in four people do not have access to the palliative care and support that they need at the end of their life. As we have heard and as Bob Doris outlined, poverty is often a barrier to accessing palliative care, which is one of the key challenges that we must address.

I was taken by a point in Marie Curie’s briefing for the debate. It compared a finding from the “Report on a National Survey Concerning Patients with Cancer Nursed at Home” from 1952 with a 2022 survey and found many overlapping problems that we have not resolved. That should result in a real demand that we all step up to address this issue, because we know that the need for palliative care is increasing and that an ageing population will present more challenges for our health service. Our hospice sector will be there, wanting to help to fill that gap. We as parliamentarians, and the Government especially, need to be there to help.

The funding problems that the sector faces today and will face in future are at the heart of what the Government must look at. We see a cross-party consensus on what needs to be a better deal for our hospice sector. Many people will have views on how that is shaped, and I know that the Government has views on it. However, it is an emergency situation for some hospices that are using their own reserves now, and that needs to change. I hope that, in the new year, the Government will look towards a solution.

I hope that the new year will present opportunities for the palliative care sector. We have the National Care Service (Scotland) Bill. I hope that, unlike what we did as a Parliament on the integration of health and social care, we will make sure that the hospice sector is at the heart of what that bill delivers. That is why I hope that the Government will also look towards enshrining a right to palliative care in the bill. We need to solve the problems that prevent us from addressing the issues. A person should be able to have a prompt assessment, and some people want specific services to be developed. Positive conversations around death can then take place with family and friends, with the individual at the heart of the decisions.

I hope that, from this and previous debates, the Government will take away the fact that there is real cross-party belief in the need to look at what palliative care means in Scotland for the future and understand that that is an ask of Government. There is an opportunity for Parliament to unite to do something that sustains and takes forward our palliative sector next year.

As others have done, I pay tribute to Marie Curie for what it has achieved over the past 75 years. It is a remarkable milestone anniversary, but I know that it is not resting on any laurels. It wants to make sure that it is there for every family and individual.

Deputy Presiding Officer, I take this opportunity to wish you, everyone else in the chamber and those watching a very merry Christmas.

Thank you, Mr Briggs.

14:14  

I, too, thank Bob Doris for bringing the motion to Parliament for debate and Marie Curie for its 75 years of providing palliative care across Scotland and the UK.

The first Marie Curie home in the UK was opened in 1952 at the Hill of Tarvit in Cupar, Fife. Since then, its UK hospice network has grown, with nine hospices now offering in-patient and out-patient care and a broad range of day therapies to meet the needs of individual patients.

As others have said, the two Scottish hospices are in Glasgow and in my constituency of Edinburgh Pentlands, at Fairmilehead. I have visited that hospice on many occasions, the most recent time being only two weeks ago, when I took part in the lights to remember event.

In the past year, the Marie Curie Edinburgh hospice and the West Lothian care-at-home team supported a total of 1,690 patients through their in-patient, out-patient, community and day therapy services. I should point out that my wife is a district nurse who provides palliative care to patients in West Lothian and works alongside the Marie Curie care-at-home team, which provides support to those individuals.

Demand for the service is increasing as Scotland’s population is ageing, with the census highlighting that, between 2001 and 2021, the over-65s had increased from 16 per cent of Scotland’s population to 20 per cent, which is an increase of nearly 267,000 people in that age category. Although, compared with previous decades, life expectancy for men and women is increasing, there is a downside in that those who are over 65 have more health problems and the amount of time that is spent in ill health is also rising. That puts pressure on our health service, including those who are working to improve end-of-life care.

The Marie Curie report “How many people need palliative care?” provides basic estimates of the future need and indicates that there will be a significantly higher need for palliative care in the future. The report states:

“The methods used in this report can provide a headcount of how many people in the population need palliative care, but they do not indicate what the service implications are for meeting this need, what the gap is between need and the current provision of care and services, or which groups or individuals are most likely to miss out. More research is needed to model population need for different types of services, alongside improved data on service access, outcomes, and patient and carer experiences.”

The member is making a crucial point. Does he agree that my point about the weaker support networks in deprived communities and the more numerous financial vulnerabilities in those communities means that we might need to put more intensive support into those particular areas when we are mapping need and provision in relation to palliative and end-of-life care?

I totally agree with that, and I will come to that point in two seconds.

I welcome the announcement in the report that Marie Curie will commission research to help answer the questions of population need for different types of services, alongside improved data on service access outcomes and patient and carer experiences.

It is important that we better understand what support people require as they reach the last few months of life. Therefore, I welcome the Scottish Government’s creation of a strategy steering group to oversee the development and delivery of a new palliative and end-of-life care strategy. The aim is to ensure that everyone in Scotland receives

“well-coordinated, timely and high-quality palliative care, care around death and bereavement support based on their needs and preferences including support for families and carers.”

The strategy will also aim to understand and respond to issues of financial insecurity, housing and employment, and it will provide information in accessible formats for everyone who requires end-of-life care, and their families.

I thank the dedicated staff at Fairmilehead Marie Curie hospice, who will be working over Christmas and new year, for all that they do to support those people who are reaching the end of their lives.

14:18  

I thank Bob Doris for bringing this important debate to the chamber.

Everyone deserves as pain-free and peaceful a death as possible, surrounded by those who love them, in a place that comforts them and in which the choice is theirs. We can all agree that, at some point, we will all be touched by the death of a loved one, and that, should that loved one need end-of-life care over a period of time—palliative care—we would all wish that to be provided in the best way possible, by trained and sensitive care staff, who, as Bob Doris indicated, are passionate about what they do and have the knowledge, time and training to support not only the physical side of our loved one’s deterioration but their emotional needs and those of the wider family.

As we have heard, since its inception in 1948, Marie Curie has developed to do just that. I welcome the commitment of Marie Curie to working with those at the end of life. Nowadays, Marie Curie works not only in hospices but in people’s homes, in our communities and with our NHS. My South Scotland region is served by NHS Ayrshire and Arran, NHS Borders and NHS Dumfries and Galloway. I know that patients and staff from all of those health boards hold that working relationship in high regard.

The report that others have mentioned talks about numbers of visits. In my region, in 2022-23, 59 people in NHS Ayrshire and Arran were seen, 95 people in NHS Borders were seen and there were more than 4,000 visits in NHS Dumfries and Galloway. Every number represents a person who may be in pain and feeling overwhelmed and lonely as they approach those last days of life. Like others in the chamber, I am thankful that we have a dedicated organisation such as Marie Curie, which does its best to provide visits to patients, often in very challenging circumstances.

I will raise three issues that have been touched on by others and that really struck me about the provision of end-of-life care and the provision of hospice care in 2023, as we go into 2024. We can all agree that it is valuable work and a service that we want to continue. For that to be a reality, we need to address the issue of funding. We have heard that statutory funding has not kept pace and that hospices across Scotland face a £16 million deficit. We need the Scottish Government to make clear what steps it can take to support the funding of hospices. That links to my next point, which is about staffing.

We all agree that hospice staff are trained to the highest level and need to be seen on a par with NHS colleagues.

On the point about funding, the member will recognise the immense public goodwill for hospice care across Scotland. That was exemplified by the efforts to rebuild the Marie Curie hospice in Glasgow, which raised £16 million around 10 years ago, more than half of which was from readers of the Evening Times. That shows the level of public goodwill to support hospices, but, as the member says, with increasing demand, that kind of fundraising is not sustainable to grow the capacity that we need. The state needs to intervene.

Carol Mochan, I can give you the time back.

That is a very well-made point. We have addressed how much Scottish people value hospices, and they would do everything that they can to ensure that that funding continues. Therefore, we, in the Parliament, have a responsibility, as does the Government, to do everything that we can to fill that funding gap and have the sustainable plan that Bob Doris and others mentioned.

We need to not only value the work of our colleagues in hospices but recognise the pay gap and ensure that it does not continue. We do not want to lose staff or discourage people from moving to the sector, because it is so important.

Finally, I will raise a point that I have raised many times in the chamber, which is the injustice of inequality. Others have mentioned it, so I will not labour the point. Members have spoken about the dying in the margins exhibition, and we all know that a picture expresses 1,000 words. The richest of us can often afford to stay at home and receive daily care directly in the places in which we have lived and prospered, but for those who have suffered through their life and struggled to make ends meet, often no such option exists. They leave their life with the same sense of powerlessness that they had in aspects during their life. It is simply not right that that happens.

Surely, in a time of need such as the end of life, we must look to find solutions to provide all the care and comfort necessary.

14:24  

Thank you, Deputy Presiding Officer, for the opportunity to speak in the debate. I, too, will start by paying tribute to Bob Doris for bringing the motion to the chamber today, to celebrate the 75th anniversary of Marie Curie. It was great to hear from our colleague Gordon MacDonald, because one of my earliest memories of being an MSP was when Gordon MacDonald and I met at Ainslie Park swimming pool, in my constituency, to throw our support behind a swimathon to raise money for Marie Curie.

I say that to pay tribute to all those who have undertaken fundraising initiatives over the past 75 years to support the work of Marie Curie. I was invited by Marie Curie to support that fundraising initiative along with Gordon MacDonald. Gordon MacDonald talked about the hospice in his constituency. Marie Curie’s offices are in my constituency of Edinburgh Northern and Leith, at Links Place. The reason I wanted to mention that and speak today is to pay tribute not just to those who provide palliative care, which others have rightly emphasised, but to the organisational and policy teams at Marie Curie.

During my time as an MSP, those teams have made a significant contribution to a range of parliamentary considerations and activities, including this debate. I remember Marie Curie’s input during the passing of the Social Security (Scotland) Act 2018, which is a better piece of legislation because of Marie Curie’s input, along with that of many other stakeholders. Since the passing of the act, the implementation of social security in Scotland has benefited from much advice, ideas and emphasis on certain areas from Marie Curie. We recognise the huge contribution that Marie Curie has made over its years of existence to providing and enhancing palliative care and making the case for palliative care. Throughout that time, and particularly in recent years, the policy team has, in relation to the experience that I can advocate for, made an important difference to the process of policy making and law making.

14:26  

I, too, thank Bob Doris for lodging the motion for the debate, and I thank members in the chamber for their contributions. Mr Doris has been a champion of our palliative care for many years now, as is evident in his role as co-convener of the cross-party group on palliative care alongside Miles Briggs, and through his tireless work inside and outside the chamber to support Marie Curie and other hospice services.

I agree with the many members who have said that it is poignant to be here today having this debate. It would also be remiss of me, particularly given my role as the minister for women’s health, if I did not pay tribute to the woman who made all this possible, Marie Curie herself. Her life was dedicated to science and advancing our knowledge of medical physics. She is an inspiration to me and, I know, to many women across the world. Like the organisation that bears her name, we have much to thank her for.

If you might indulge me, Presiding Officer, I will quote Marie Curie:

“Nothing in life is to be feared, it is only to be understood. Now is the time to understand more, so that we may fear less.”

That is particularly poignant, given the subjects that we are talking about in the debate.

I congratulate Marie Curie on its achievements over the past 75 years, and the staff and volunteers who have pioneered palliative and end-of-life care. Marie Curie has provided invaluable support to people and their families at the most challenging points of their lives, as well as supporting other health and social care services and teams delivering palliative care and end-of-life care.

I note Ben Macpherson’s point about the importance of Marie Curie’s policy team supporting the Social Security (Scotland) Act 1998, and I know that it has a lot to engage with on palliative care.

Many colleagues across the chamber have reflected how much Marie Curie’s services mean to them, their families and their constituents. That highlights the broad scope and reach of Marie Curie’s work, and why it is so important. As Carol Mochan says, it is delivered in hospices, in communities and in people’s own homes.

Bob Doris’s motion highlights the increased need and complexity of palliative care that is projected by Marie Curie research up to 2040. We reflected on that during Sue Webber’s members’ business debate earlier this month, and in the debate that we had on the cost of dying. Those issues were discussed in the context of sustainable hospice care to meet future need. As Bob Doris said, Marie Curie is well placed to help with that challenge. In 2022-23 alone, Marie Curie has delivered care and support to more than 8,000 people across Scotland. Therefore, it is vital that we learn from the wealth of experience that organisations such as Marie Curie bring to inform our work and support the development of sustainable, high-quality palliative and end-of-life care services.

As I have said before, I have made it a priority to meet or visit a number of hospices, as well as convening the round-table event on 5 December with Marie Curie, among all the other independent hospices in Scotland, and health and social care partnership chief officers.

Discussion at that meeting was open, frank and valued by participants, who noted that that was the first time that such a dialogue had been opened. They were grateful for the chance to discuss those important issues, even though the financial situation remains challenging. I recognise the £15.5 million gap. I will strive to help where I can. Because health and social care partnerships are responsible for planning and commissioning adult palliative care services, we have been engaging with them to explore solutions and options for longer-term sustainable planning and funding for hospices.

At the meeting, colleagues also welcomed our wider work on the development of a new palliative care strategy. There are real opportunities to address the commissioning of independent hospice care through wider consideration of national and local leadership, responsibility and accountability by the strategy steering group, which was established to oversee the development and delivery of the new strategy.

One of the key issues that we need to address is the fact that, before health and social care integration, a chief executive’s letter provided the certainty and opportunity for our hospice sector to fund the work that it does. Is the minister considering whether that could be reformed as part of the national care service to achieve the sustainable funding that the sector desperately needs?

I note Miles Briggs’s intervention. The care service does not sit within my remit, but I will discuss that with Ms Todd.

The aim is to publish the new strategy for consultation in spring 2024. Marie Curie is a key partner in our strategy steering group, along with the Scottish hospice leadership group and CHAS. We have all agreed a shared aim that everyone in Scotland should receive well-co-ordinated, timely and high-quality palliative care around death and bereavement support, based on their needs and preferences, including support for families and carers.

I appreciate Evelyn Tweed’s comments regarding rural and island areas, given where I live. I know that Marie Curie nurses operate in my constituency, and we need to recognise inequalities across Scotland, as Gordon MacDonald highlighted.

We also have a shared commitment to equitable and timely access to general and specialist palliative care services, as needed by each person of any age living with any illness in all places. As Carol Mochan said, it is about putting the individual at the heart. The key question is how to achieve timely and equitable access.

I am keen that we continue to focus our improvements through the development and delivery of the new palliative care strategy. We will build on the research published by Marie Curie and develop a strategy based on evidence—including our wider analysis of current and projected needs and our mapping of governance, services and support—and underpinned by what matters to people and their families based on their understanding and experiences of palliative care. It will be important for the strategy’s steering group members to continue to engage, as they are already doing, with the National Care Service (Scotland) Bill and the forthcoming human rights bill.

We want people to receive care where they feel most comfortable, wherever possible.

I apologise for interrupting the minister. I am listening carefully to what she is saying. She mentioned that the National Care Service (Scotland) Bill is Ms Todd’s responsibility. The human rights bill will be another minister’s responsibility. Ms Minto has a cross-cutting responsibility for palliative and end-of-life care. So that representations do not get fragmented as we move forward, what assurances can the minister give that there will be a single point of contact for MSPs who wish to progress this matter in Parliament on a cross-party basis?

Mr Doris makes a good point about who is the right person to speak to, which I recognised when I was on the back benches. I will take that away and make sure that we have absolute clarity on which minister is the appropriate one to contact.

I will start my last sentence again. We want people to receive care where they feel most comfortable, wherever possible. For many, but not all, that will be at home, supported by their family, friends and care staff. For some, it will be in a hospice. I again thank all who work in Marie Curie for the commitment and dedication that they show each day, often in extremely challenging and upsetting circumstances. I offer my personal thanks for all that they do on every day of the year.

I conclude with another Marie Curie quote, which I will certainly consider over the Christmas break:

“One never notices what has been done; one can only see what remains to be done.”

On that note, I wish everyone a very happy Christmas and a good new year when it comes.

That concludes the debate. I take the opportunity to be the last to wish all in the chamber and in the gallery—in particular, all those with a connection to Marie Curie—a merry Christmas and a happy and healthy 2024.

With that, I close this meeting.

Meeting closed at 14:35.