Meeting of the Parliament

Meeting date: Wednesday, December 6, 2023

Official Report 1047KB pdf

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Charitable Hospice Care

The final item of business is a members’ business debate on motion S6M-11352, in the name of Sue Webber, on charitable hospice care to meet future need. The debate will be concluded without any question being put.

Motion debated,

That the Parliament thanks charitable hospices, across both adult and children’s services, for providing vital palliative and end of life care and bereavement support to an estimated 21,000 people in Scotland in 2022-23; commends the care that they deliver, which reaches out into communities and people’s homes, through services such as hospice care at home, supporting not only patients but also their families and loved ones; understands that demand for palliative care is predicted to increase by 20 per cent by 2040, and that the care that people need will be more complex; further understands that around 8,200 people die in poverty every year in Scotland; considers that people impacted by poverty face barriers in accessing hospice care; believes that everyone should have access to hospice care if they require it; considers that hospice care reduces pressure on NHS services by supporting people to stay at home and avoid unnecessary hospital admissions; notes reports that unscheduled care costs the NHS £190 million per year for those in the last year of life; understands that the use of unscheduled care services by those in the last year of life in the most deprived areas of Scotland is almost double that of those in the least deprived areas; welcomes that charitable hospices work in partnership with colleagues in the NHS and across the health and care sector; understands with concern, however, that the impact of matching the recent NHS pay awards, alongside rising running costs, is expected to leave the hospice care sector £16 million in deficit in 2023-24, meaning that hospices may need to make tough decisions about the services that they can provide to patients and families in the future, and notes the belief, therefore, that a new national funding framework for hospice care is vital to ensure the ongoing sustainability of the sector and to allow charitable hospices to continue to support the NHS and provide high-quality palliative care to people in the Lothian region and across Scotland.

17:20  

It is a privilege to be able to bring this debate to the Parliament. Not that long ago, back in November, I hosted, on behalf of my colleague Miles Briggs, a round-table event on the dying in the margins study from Marie Curie and the University of Glasgow. It was heartening to see such strong cross-party support at that meeting, and I am delighted to see such strong representation from members on all sides of the chamber today, too.

Ahead of the debate, I have been working with Hospice UK, Marie Curie and St Columba’s Hospice Care to understand more about the key issues that hospices face, particularly the problems surrounding funding. I thank them all for their support in preparing for the debate.

Why are we here? First and foremost, it is because the funding of hospice care is unsustainable. Hospices face an expected deficit of £16 million this year, as statutory funding has not been keeping pace with historical and recent spiralling costs. In particular, the cost to hospices of matching the national health service pay awards in order for pay to remain fair and competitive for their staff has been highlighted to me as an issue.

With the demand for palliative care increasing and the health and care system under significant strain, the support that charitable hospices provide has never been more crucial or critical. Hospices provide vital support to general practitioners, district nurses, care homes, hospital teams and social care through training and education, specialist clinical expertise and strategic leadership.

Hospices bring more than £60 million of charitable funding into the local health and care system each year, and we should not hide from the fact that they lessen the demand on our statutory services by reducing the number of emergency admissions, reducing the length of stays in hospital and supporting people to stay at home. They are, therefore, worth every penny, as they provide significant value for money.

The harsh fact is that the number of people in Scotland who need palliative care is predicted to rise by 20 per cent by 2040. In addition, they will need more complex care, further adding to the pressure on the already overstretched NHS. Charitable hospices are a key part of a cost-effective solution to those pressures, but they can do their work only if the funding and the hospices themselves are sustainable.

Hospices are struggling to stand still, let alone invest in responding to the future challenges that they face. Current funding arrangements do not support hospices to innovate and grow their services. In Scotland, there are 16 charitable hospices—14 for adults and two for children and young people. St Columba’s Hospice Care and Marie Curie hospice Edinburgh, along with Marie Curie’s hospice care-at-home teams, provide hospice care across Lothian. In November, I had a very informative visit to the Marie Curie hospice at Fairmilehead. I am ashamed to say that, in all the years that I have been in this world and living in Edinburgh, that was the first time that I had been there.

In 2022-23, about 8,815 people died in the Lothian region, and 90 per cent of them had a palliative care need. Across the region, 4,060 visits were made to 672 terminally ill people by the Marie Curie hospice care-at-home team. Marie Curie hospice Edinburgh and the West Lothian service supported a total of 1,690 patients through their in-patient, out-patient and community and day-therapy services.

I think that a lot of people have a preconceived idea of what hospice care is and what a hospice is all about. They just see a building and think only of rooms and beds and people being there to die. However, that cannot be further from the truth. Most of Marie Curie’s work is done in the community, with the majority of hospice care delivered beyond the hospice buildings, out in people’s homes and in the community. Hospices give people the option to die with their friends and family in their own homes, 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 their life. Crucially, that keeps them out of acute hospital settings. The team is essential to keep people in the right place, and it also offers family support to relatives.

I would like to touch on the work of St Columba’s Hospice Care in Edinburgh. In March 2023, it began a trial of a groundbreaking new virtual ward service. As far as we have been made aware, it is the first hospice in Scotland to roll out a development of that kind. The new service across Edinburgh and East Lothian provides patients and families with an alternative model of care, and it allows patients to be fully cared for in their own homes or in places of residence towards the end of life. The care and expertise that the team provides allows patients to remain at home with a very high level of support, which would otherwise require in-patient hospice or hospital-setting care.

The cost to the health and social care service of caring for people in the last year of their life is vast. Almost one in three people in Scottish hospitals are in their last year of life, and 95 per cent of people in Scotland use NHS unscheduled care services in the last year of life, which represents a total cost of nearly £190 million. That is why hospices are crucial.

In 2022-23, hospice care providers made more than 123,000 visits to people’s homes to deliver vital support. As I stated earlier, hospices provide vital support to GPs, district nurses, care homes, hospital teams and social care through their training and education, specialist clinical expertise and strategic leadership. They also bring more than £60 million of charitable funding into the local health and care system each year.

Earlier this week, the Minister for Public Health and Women’s Health attended a round-table event on hospice funding. I heard that, rather disappointingly, the minister opened the meeting by saying that the hospice sector’s call for remedial funding to address the £16 million deficit that the sector faces over the next three to five years is unaffordable. The minister also said that that meeting was the “start of the discussion” and that it would feed into other meetings that are due to be held soon. However, there is no clear timeline for next steps.

I hope that this debate will go some way towards shaping the minister’s thinking and that it will get her up to speed with the invaluable role that hospices play in our society, as our population ages and as people’s needs as they approach the end of their lives become increasingly complex.

In conclusion, I think that we can all agree that a new national funding framework for hospice care is vital to ensure the on-going sustainability of the sector and to allow charitable hospices to continue to support the NHS and provide high-quality palliative care to people in the Lothian region and across Scotland.

17:28  

I thank Sue Webber for bringing this important debate to the chamber.

I want to speak today because Ardgowan hospice is based in my constituency, and I am sure that almost every family in Inverclyde has had some connection with the hospice, through either a relative or a friend, over the years. The local hospice is loved and respected by the community, and it is a facility for everyone, no matter what their financial situation.

However, the past few years have brought many challenges not only to Ardgowan hospice but to every hospice across the country. The pandemic affected their ability to fundraise, and the past year has been extra challenging, given the exorbitant energy increases and the impact that the NHS pay awards have had on their finances.

I regularly highlight both the positives and the challenges that my Greenock and Inverclyde constituency faces. Inverclyde has been facing economic and social challenges for many years, which has meant that we have lost many of the larger businesses, and our population has shrunk to just over 77,000 people. As a result, the pool of organisations and people from whom hospitals can seek donations has decreased.

Ardgowan hospice therefore gets creative by organising a range of fundraising events every year. That includes the 12 days of kiltmas, which the hospice chief executive and I are currently doing. We are wearing a kilt for 12 days straight, starting on St Andrew’s day, last week. Today is day 7, and there is a JustGiving page if anyone is interested.

The organisation also organises the ever-popular Ardgowan hospice ball, as well as fire walks, sky dives and Christmas appeals. A local actor, Martin Compston, who is one of the hospice’s ambassadors, currently features in its campaign for funds to upgrade one of the rooms for family members to stay in overnight. As members can see, its fundraising team is busy all year round, and those activities help the hospice to engage with the wider community.

Although that is positive, it is clear that the funding model for hospices needs to change. With each hospice across Scotland receiving a different percentage of public funds to help it to deliver services, there is no parity in the sector. Consequently, Scottish hospices have come together to work collectively on the issue, which I whole-heartedly welcome.

I know that the financial situation that the Government faces is tough. Just this afternoon, we debated the fiscal framework, with a wide variety of political points being raised by all sides in the chamber. This debate does not need to follow in that vein. However, the hospices letter that was sent to the minister, dated 20 November, clearly highlighted the situation that Scotland faces and set out hospices’ asks. For me, one of the most important asks is about the future, and I believe that we need to have a wider discussion in order to find a solution to the longer-term funding situation for all our hospices. I hope that that will provide a more stable operating position for hospices, so that they can focus on what they need to do.

However, the first point that needs to be addressed concerns the here and now. I do not profess to have all the answers, but I suggest that consideration be given to looking at the overall health budget to see whether there is any underspend that could be used. I say to the minister that I know that such decisions are tough and that the recent letter that was sent by the Deputy First Minister to the Finance and Public Administration Committee outlined the desperate financial situation that Scotland faces this year and in future years. As the Minister for Community Wealth and Public Finance said in his closing comments in the previous debate, it is estimated that that situation will last for up to 10 years, and potentially more. Therefore, attempting to find any resource to help will be challenging, to say the least, but I urge the minister to look again at the budget.

With the increasing age of Scotland’s population, the demand for hospice services will only grow. Not every person will want to go to a hospice at the end of their life, but the need for high-quality palliative care will only increase, including in the community. Other excellent organisations and agencies deliver that, too, but we have to face the fact that demand for hospice care will only increase in future years. That is why a fairer funding model to ensure the stability of our vital hospice sector is needed.

17:32  

I thank my friend and colleague Sue Webber for securing this important members’ business debate, and I put on record my thanks to the organisations that have provided helpful briefings ahead of today’s debate. I also thank those organisations for the services that they provide across Scotland and, perhaps more importantly, the love and support that they give to families at the most difficult time that anyone can imagine.

From the age of seven, I have known and valued the contribution that hospices make to people when they and their families need them. I say that because the final memories that I have of my mum are of seeing her in the hospice and leaving her to go on a charitable fun run. I remember the kindness and care that the staff showed not only to me but to my family members following her death. Throughout the time that my mum and family needed hospice services, they were there for us. That is why I make no apology for the fact that, throughout the time that I have been lucky enough to serve in this Parliament, I have advocated for our hospices across Scotland, because we need to make sure that they succeed. We have already heard some important speeches about why that is the case.

Marie Curie’s briefing for the debate starkly outlines the fact that, in the years to come, 60,000 people a year across Scotland will need hospice services in a community setting. The country needs to start planning for and funding that 20 per cent increase.

As there are no other Lanarkshire MSPs in the chamber tonight, does the member agree that we should promote St Andrew’s hospice, which is based in Airdrie, and the fantastic work that it does for patients and in fundraising all year round?

Absolutely. All of us have probably been invited to visit our local hospices and have seen not only the amazing work that they do at the most difficult time but the roots that they have in our communities.

I very much welcomed the work that the Government undertook with Children’s Hospices Across Scotland in the previous session of Parliament. I lobbied ministers to bring the parity in funding for children’s and adult hospices that we, as a country, expected to have. I very much welcomed the agreement that they signed to provide about £30 million over a five-year period—which has now come to an end—to fund services for children with life-limiting conditions and the support services that their families need. I am sorry to say that, in reality, that has not been delivered. Indeed, the Government agreement to provide 50 per cent of costs amounted to only about 30 per cent of funding.

Adult services in Scotland are in a more difficult position today, with the average hospice receiving about 25 per cent of costs for the provision of statutory services. We need things to change. One of the issues—I know that this has been raised in previous debates—is that the integration of health and social care and the creation of integration joint boards have led to a postcode lottery when it comes to funding our hospice sector. That urgently needs to change, too.

I very much welcome the constructive meetings that I have had to date with the minister on the issues. It is really important that they are taking place on a cross-party basis. However, there needs to be—as has been raised by other members—real action. First, we need to put hospices on an even keel to address the deficits that they face. As has been mentioned, the NHS agenda for change pay settlements have placed an additional £16 million cost on the hospice sector. The sector needs urgent support to ensure that it can retain staff. We do not want a staffing crisis to be the next problem that the sector faces.

As Stuart McMillan outlined, it is critical that we have an equal partnership and a new funding framework. I think that all of us here will agree on that, but of importance is how the Government makes that a reality in order to deliver a minimum of 50 per cent of the costs of delivering core hospice services. I believe that arrangements used to be set out via a chief executive’s letter, but the sector is crying out for a framework. I hope that the minister can take that on board as the key ask from the debate.

We must have a dynamic funding mechanism to support future needs. We know from all the briefings what that will look like. Our NHS will not be able to meet that demand, so our hospice sector has to be ready to do so.

The founding principle of our NHS was to provide a health service from the cradle to the grave. Without the hospice sector, we will not have that. For people who access palliative care and their families, that would be not only a tragedy but completely unacceptable. We know that many hospices are already using their reserves to fund core services. That is not sustainable.

I hope that the minister will take from today’s debate the pressing need for a new deal for our hospice sector. Cross-party support exists for that, and we can work together to ensure that we deliver for people when they really need it.

17:37  

I thank Sue Webber for bringing the debate to the chamber, and I put on record my thanks to hospices across adult and children’s services for the vital palliative end-of-life care and bereavement support that they have provided to more than 20,000 Scots in the past year.

CHAS runs Robin house in Balloch, which is in my constituency. It truly is a place of joy for the children and their families who use its services. I have constituents who have been cared for by St Margaret of Scotland hospice in Clydebank, and I know of the fantastic work that Marie Curie and the Prince & Princess of Wales hospice undertake in Glasgow. There will be many more besides.

I debated whether to spend my four minutes waxing lyrical about the essential and excellent work that our hospices do across Scotland, but others have already done so. Consequently, eloquence is out the window and straight talking is the order of the day—the minister should expect nothing less.

Our hospices are struggling with rapidly rising costs. The round-table session that was held with the minister yesterday was an opportunity to address that, especially before the budget, but she failed to take that opportunity. Where was the commitment to a minimum of three-year funding in the funding framework? Where was the national monitoring and oversight? Where was the provision to match NHS pay awards and the need to ensure pay parity? All of that is entirely missing from the framework.

The minister has a leadership role to play, which I think she would acknowledge. Getting everyone together at the round-table session and carrying out partnership working and local collaboration are, of course, constructive. However, as Sue Webber said, opening the meeting by telling hospices that their call for remedial funding for the next three to five years to address the £16 million deficit that the sector is facing is unaffordable was, frankly, wholly unacceptable.

The Government has reallocated money that had been intended for its independence referendum, and I welcome that. However, it has a constitutional futures division that eats up £2 million a year in staffing costs. Over the next five years, that expenditure would come to £10 million, which is more than halfway to what is needed by hospices. Surely that would be a better use of that money.

The additional costs that I refer to arose in part because of the Scottish Government’s actions in giving a wage rise to nurses in the NHS. They deserve every penny, but so do nurses working in hospices. Unfortunately, if hospices cannot offer the same pay, their nurses will leave in order to get better pay. It is irresponsible of the Government to shrug its shoulders and say that there is nothing that it can do. Again, the issue is about leadership.

We know that, for every £1 of statutory funding that is invested in hospice care, there is a saving to the taxpayer of £6 for child hospice care and £4 for adult hospice care. However, that is possible only if hospices are sustainable and treated as equal partners, with more than a passing nod from the Government in recognition of the significant financial contribution that they make and the risk that they undertake.

With all due respect, the Scottish Government cannot afford to watch another area of the health and social care sector descend into crisis on its watch. It must be involved in workforce planning and action needs to be taken on remedial funding in the budget. There needs to be a clear funding framework.

I will make a final point, because I have been around so long that I remember things. In the “Strategic Framework for Action on Palliative and End of Life Care—2016-2021”, the then Cabinet Secretary for Health, Wellbeing and Sport, now the Deputy First Minister, said:

“This Strategic Framework outlines the areas where action needs to be taken to ensure that by 2021 everyone who needs palliative care will have access to it.”

That strategic framework has come and gone. The palliative care strategy was then promised in the programme for government in 2021 and was to be developed and published over one year. That timescale has also come and gone, and the strategy has not been delivered. Where is the commitment to hospices and palliative care? To be frank, we have yet to see it.

17:42  

I thank Sue Webber for bringing this important debate to the chamber. I speak in the debate having spent 14 years working as part of the nursing team at the St Margaret of Scotland hospice in Clydebank. I also make my contribution as a member of the cross-party group on palliative care.

As has been said, Scotland has many excellent hospices that provide round-the-clock care. Marie Curie, the largest third sector provider of hospice care services in Scotland, supported almost 8,000 terminally ill folk in 2022-23, and, for more than 30 years, families across Scotland caring for a child with life-limiting conditions have been able to turn to Scotland’s only children’s hospice service, Children’s Hospices Across Scotland—CHAS.

The St Margaret of Scotland hospice, where I used to work, was the first hospice in Scotland when it was founded in 1950. Since that time, it has provided medical support to patients who have complex care needs and has also provided spiritual, psychological and social support for patients. That comprehensive approach ensures that individuals receive the care that is right for them at the time of their greatest need. Every year, it touches the lives of approximately 1,800 people, and it does so with compassion and dedication.

My time in the St Margaret’s hospice team was incredibly rewarding and a real privilege, but it was also immensely challenging. Caring for patients with advanced life-limiting illnesses and complex care needs is not easy; it is an incredibly emotional job that requires resilience and empathy. The care that those who work in a hospice provide extends well beyond the patients themselves. They also get to know and care for the families and friends of the patients and provide a level of support for them during what, for some, is the last few weeks or months that they will have with their family and friends.

My sincere and eternal thanks go to the St Margaret of Scotland hospice team, which is ably led by Sister Rita as chief executive. The members of the team have touched the lives of many, including myself, and they continue to provide the exceptional care that we would all hope for, should we or a relative need it.

I recognise that all our hospices are facing challenges with funding at this time. Charitable donations make up a large part of their funding, and I know that many people are unable to donate because of the cost of living crisis. That is a real challenge for hospices.

I welcome the fact that the Scottish Government is currently developing a new palliative and end-of-life care strategy. The strategy will, I hope, aim to ensure that everyone in Scotland receives well co-ordinated, timely and high-quality palliative care that is based on their needs and preferences, including support for their families and carers. Alongside that, the wider commitment from the Scottish Government to the national care service will ensure a level of high-quality social care across Scotland. The service will oversee the delivery of care, improve standards, enhance pay and conditions for workers and provide better support for unpaid carers. It is important that the relevant legislation works in partnership with providers of palliative and end-of-life care to ensure that the service recognises and responds to the growing need for palliative care across our community.

As has been mentioned, hospice care in Scotland will continue to have evolving needs, and I am glad that the Scottish Government recognises that. Hospices play a crucial role in Scotland’s healthcare system. They do not just provide medical care; they are a source of compassion and support for patients in the final stages of their life, and they offer stability and reassurance for their families and friends. Hospices are underpinned by those core values, and I cannot thank them enough.

17:46  

I am delighted to be able to speak in this important debate in the name of my colleague Sue Webber.

Scotland’s ageing population means that more people will need palliative care in the years to come, and it is therefore vital that we ensure the financial viability of hospices and the third sector delivery of that care. To put that into context, it is estimated that, by 2040, 60,000 people will die with a palliative care need, representing a 20 per cent increase in demand; the number of people dying with more than one terminal condition will have increased by more than 80 per cent; and two thirds of all deaths in Scotland will be in a community setting such as people’s own homes, care homes and hospices.

We know that people in the final year of their lives are significant users of unscheduled care, with nearly 500,000 service contracts across Scotland. Thus, services must be available 24 hours a day. That is why hospices and third sector partners are so important. They reduce pressure on unscheduled care services, which cost the NHS a staggering £190 million a year for those in the final year of their life.

I note the financial constraints that are placed on charitable hospices with regard to matching NHS pay awards, making it impossible to operate in a financially secure way, which has forced the sector into a £16 million deficit for this current year. I also note the need for a new national funding framework for hospice care to ensure the financial stability of the sector. However, I would like to focus my remarks on CHAS.

I am privileged to have the Rachel House children’s hospice in Kinross in my region, and I know that everyone will be aware of the fantastic work that CHAS does to support families and patients. For more than 30 years, CHAS has been Scotland’s only children’s hospice service, and it works diligently to ensure that no one should face the death of their child alone. It provides world-class emotional, practical and medical support from the point at which the child’s condition is diagnosed right through to bereavement or transition to adult services. I have visited Rachel House and can say that the whole surroundings are perfectly arranged to make what is a very difficult time as comforting as possible. We need only look at some of the testimonials to truly see how amazing the service is. One parent said:

“The death of a child is indescribably devastating and we will always be grateful to the entire CHAS team. I cannot imagine getting through those days, weeks and months without their support”.

Unfortunately, the need for the service that is provided by CHAS has never been higher. According to the latest available figures, in the coming years, the number of children in Scotland who die young might rise by more than 40 per cent, and there is no evidence that that number is dropping. However, CHAS is facing undue pressures, with a budget deficit of £2.3 million this year. That is largely due to the unavoidable cost burden of trying to match NHS pay awards in an organisation where staffing costs represent 75 per cent of its expenditure. Having to ensure that the charity remains competitive within the specialist care market leaves it with little option but to do all that it can to match the comparative grade levels in the NHS. However, CHAS does not receive any additional statutory funding when NHS awards are made, which leaves it at a massive disadvantage. That is even more significant when we realise that 70 per cent of the charity’s income is raised through the amazing generosity of the Scottish public.

The stark reality is that the Scottish Government’s funding for CHAS is declining. In 2016, the then Cabinet Secretary for Health, Wellbeing and Sport committed to public funding for pay parity between children and adult hospices at 50 per cent of agreed costs. Unfortunately, that actually came to 30 per cent.

As another parent told the Scottish Government, investment is needed and

“this service is a vital service for those who will lose a child due to chronic illness … put the needs of our precious children as a priority, Please.”

I urge the Scottish Government to meet its programme for government commitment to sustainable funding to ensure that CHAS continues the excellent work that it provides to Scotland’s terminally ill children and their families. Again, I thank my colleague Sue Webber for bringing the topic to the chamber.

17:50  

I congratulate Sue Webber on securing the debate.

Hospices are essential to end-of-life care but, unfortunately, they are not available everywhere. First of all, we must ensure that everyone has access to high-quality palliative care, be that in a hospice, at home, in hospital or in another setting. People need to have choice as to where that care can be accessed. As that can depend on someone’s life-limiting condition, people need information both to make an informed decision and to understand what their needs might be, how their care can be delivered to enable them to have a good death and where that care needs to be delivered if they require specialist care. Most people want to die at home, and that should always be the starting point. We have a right to a home birth but we do not have the right to die at home.

There seems to me to be a hierarchy of end-of-life care, with cancer patients tending to get better-quality care than those with age-related illnesses such as dementia and organ failure. It is hard to understand why that is, but it needs to change. We need to ensure that everybody has the same rights and ability to access end-of-life care.

Other members have spoken about hospices struggling financially. That is the case with many charities that depend on NHS funding. Highland hospice, which is an amazing organisation in the Highlands, receives around 25 per cent of its funding through statutory funding and fundraises to meet the other 75 per cent of its costs. In comparison, Roxburgh house in Aberdeen, which provides much of the same care, receives 100 per cent of its funding, because it is an NHS facility. I do not think that any hospice is looking for 100 per cent funding, but there needs to be a narrowing of the funding gap between NHS and independent hospices.

Highland hospice is revolutionising how end-of-life care happens. It runs an end-of-life care together project with NHS Highland, Macmillan Cancer Support, Connecting Carers, Marie Curie, Highland Senior Citizens Network and Scottish Care. All of those organisations working together has enabled the development of the service, which offers a 24/7 helpline for agencies and families looking after someone requiring end-of-life care.

The hospice also provides a palliative care response service. That is being rolled out in Inverness, and the hope is that it will be rolled out more widely. The service provides palliative care at home, and it helps cut costs to the NHS by preventing hospital admissions. It is very important to delivering the service that the final year of life is pre-planned, so that services can be put in place and are ready for when they are required. It is important that all the stops are pulled out to ensure that people have the death that they would wish for and, indeed, that their families are witness to that, as it helps with the grieving process.

I will touch on funding not just for hospices but more widely. In my region, there are many community groups that provide support to older people and people with life-limiting and chronic conditions, but many have not had a funding uplift for decades. Because of underfunding, they cannot continue to provide the services that they do and will fail, and it will mean a loss of community care provided by the voluntary sector as well as more hospital admissions. It is a false economy, because hospitals are not geared up for that kind of care; it costs more and it is not good for the patient or their family. We need to invest in end-of-life care as we do at the start of life—they need to have equal importance.

17:54  

I thank Sue Webber for securing this debate on the future needs of charitable hospice care. It provides an opportunity to discuss some of the matters that I have been considering for some time now, in my capacity as convener of the cross-party group on palliative care in this Parliament.

Palliative care is personal to us all, first and foremost. As an elected representative, I am fortunate to have a Marie Curie hospice at Stobhill in my constituency. As a son, I was humbled to have St Margaret’s hospice in Clydebank look after my father with great care, love and compassion in the last few weeks of his life. However, hospices are not silos; they are a vital part of the fabric of our community, offering a wide range of supports, and they are actively involved in a broader range of palliative care support, not least with many of them delivering a model of care that is often described as “hospice at home”.

Such services will only grow in importance, with the requirement for palliative care set to increase by 20 per cent by 2040. Generally, with an older and frailer population, care needs will increase, yet resources for the sector are badly stretched; indeed, we have heard about the funding gap of £16 million that has been identified. We have to expand the hospice movement, not see it contract.

It is clear to me, therefore, that a new funding model needs to be developed to support hospices. We need to better understand the relationship with the NHS and health and social care in order to help reduce the frequency and impact of unplanned admissions to hospital for those in the last year of life. We also need to understand the relationship with delayed or unsafe discharge from the acute sector, when those approaching end of life could otherwise be at home and, indeed, the relationship with hospices and public models of social care that are delivered or procured through the network of Scotland’s health and social care partnerships. In that respect, I am thinking of the round table that was held just the other day.

It is fair to say that there is a variety of funding models, various service level agreements across the country, and a varied level of public funding being invested across 32 local authorities to support hospices or hospice at home services across the country. Variable models lead to variable outcomes and levels of service on offer across Scotland. Funding and provision of services are often inconsistent. Any national care service that we develop must help secure appropriate, dignified, sufficient and equitable provision of palliative care right across the country. I have met Hospice UK, Marie Curie and the minister to discuss many of those issues.

It is often said that death is the great leveller but, by that point, it is too late. In public policy, we must ensure that end of life is the great leveller for us all. With two thirds of people with a terminal illness relying on benefits, we can see that that is not necessarily always the case—it is not a level playing field. Perhaps through NHS agenda for change pay settlements, which we heard about earlier, there could be an expectation that hospices will be given funds to help match that pay award instead of drawing on shrinking reserves.

I know that it will be challenging, but we could move towards that. Perhaps the next NHS pay settlement could, as a matter of course, look at the financial impact on the hospice sector as a fundamental issue before any pay offer is agreed. I would like to see funds for hospices linked to agenda for change in the future. I do not think that we can move to 50 per cent agreed core cost funding, but it has to be a target—we have to get there.

None of us is naive about the Parliament’s funding predicament, but we have to move in that direction. We need longer service level agreements with health and social care partnerships and a clear line of accountability when those partnerships say that they are delivering what they have been told to deliver as part of any national model, and hospices say that that is simply not happening. That must change, too.

There is huge cross-party support in the chamber for all of that. We all agree that there has to be a new national funding settlement; however, none of us knows how that will be funded. I say to Jackie Baillie and others that that is where we have to come together as a Parliament and not play party politics. This is far too important.

Due to the number of members who wish to speak in this debate, I am minded to accept a motion without notice under rule 8.14.3 to extend the debate by up to 30 minutes.

I invite Sue Webber to move a motion without notice.

I will do a George Adam. Moved, Presiding Officer.

Excellently done, Ms Webber, if I may say so.

Motion moved,

That, under Rule 8.14.3, the debate be extended by up to 30 minutes.—[Sue Webber]

Motion agreed to.

17:59  

I thank Sue Webber for bringing such an important debate to the chamber. I want to highlight the critical role that Ayrshire hospice plays in my region and how such a charity can make a significant difference by providing compassionate care to those in need when they need it and, by doing so, relieve pressure on the NHS.

Earlier this year, I met Tracy Flynn, the chief executive officer of Ayrshire hospice. Tracy is passionate about the hospice and about giving the best care to everyone in the community, and the hospice itself goes beyond cancer care with a dedicated community team covering the entire region. Its 24/7 availability not only serves as a lifeline to families in moments of crisis but prevents unnecessary strain on the NHS by reducing emergency admissions. In addition to comprehensive cancer care, the hospice offers a range of services, including respite and response, bereavement counselling, the living well service and more.

Tracy also emphasised the importance of effective collaboration between the hospice and community hospitals. It is clear to me, and it is crucial to acknowledge, that a well-functioning hospice, such as Ayrshire hospice, provides immeasurable cost savings for the NHS. However, hospices exist in a challenging landscape. Only just over a third of hospices’ income comes from statutory funding; they have to fundraise the rest. As has been said, hospices face an expected deficit of £16 million this year, largely due to the cost of matching the NHS pay awards. The fact is that, to retain their key specialist staff, they need to match those pay rises.

Ayrshire hospice is one of three Scottish hospices that are funded directly by the health board, not by the health and social care partnerships. It has received just under 50 per cent of its funding from NHS Ayrshire and Arran, which falls short of covering the pay awards. Hospices must provide those pay awards independently in order to retain and recruit clinical staff.

Hospices are seeking a new framework for funding that will provide future guarantees, and they want funding that fully covers the pay awards to be passed on—and in a timely manner, too. That new framework could ensure that funding reaches hospices directly, preventing a widening gap between hospices and the NHS. Hospices also wish to remain independent but, in order to innovate and support palliative and end-of-life care that is fit for the future, they require more sustainable funding.

Through her dedication, Tracy Flynn has fostered strong relations with NHS Ayrshire and Arran, and I am pleased to hear that the new hospice building is well on track to be opened in autumn or winter 2024. However, not all hospices are as fortunate. I have previously raised those issues in the chamber with the Minister for Public Health and Women’s Health, and I would like to take this opportunity to thank Jenni Minto for meeting me and Tracy Flynn in the Parliament.

We need to commit to supporting our hospices and guarantee that individuals in need can access high-quality care. Our hospices play a crucial part in the healthcare system. As the demand for palliative care increases—indeed, it is predicted to increase by 20 per cent by 2040—and with the NHS under significant strain, the importance of the support provided by charitable hospices has never been more important.

18:03  

I, too, thank Sue Webber MSP for bringing the debate to the chamber and everyone here for their thoughtful contributions. I have listened carefully and with much interest to what members have said. Everyone’s comments illustrate the invaluable nature of hospice care and support that we have in Scotland. It is something that is close to my heart, as members I have spoken with directly understand.

I have taken the past six months to visit and meet people in as many hospices as possible across Scotland. What has struck me about all those visits and meetings is the breadth of care and support that hospices provide across our amazing country. As Sue Webber said, hospices are more than simply buildings. We all need to reflect on that, because many people assume that that is what they are. As Rhoda Grant highlighted, Highland hospice has an amazing partnership with a number of organisations in Highland and is doing work that is similar to the work that Sue Webber highlighted is happening in the Edinburgh area.

I, too, thank Hospice UK and Marie Curie for their helpful briefings ahead of the debate. Most importantly, I thank all those who work in hospices across Scotland for delivering high-quality palliative and end-of-life care services, often under difficult circumstances. Sue Webber’s motion makes it clear how vital hospices are in delivering such care for people and their families, but it also reflects the challenges that we face in developing our palliative care and end-of-life services to meet the needs of our ageing population.

As other members said, Hospice UK estimates that the number of people who need palliative care in Scotland will increase by 20 per cent by 2040. That is why we need to create the right conditions nationally to ensure that our local palliative and end-of-life care services, including hospices, have the support that they require to meet that need. Scottish hospices are well placed to help to address those challenges, given their expertise in providing vital support to people and their families, as well as supporting other health and social care services and teams that deliver palliative and end-of-life care.

When the minister was out visiting the various hospices, I was at the Marie Curie hospice in Fairmilehead. They mentioned a pilot that has recently taken place in England, where the equivalent of NHS 24 has a button to press to enable families at home to access out-of-hours advice quickly, rather than waiting in the often lengthy NHS 24 queues to get a district nurse out. Has the minister considered innovative solutions to help such people?

I have been trying to go round and listen to hospices to hear what they have done. Sharon Dowey discussed what is happening in Ayrshire, and there is a lot of innovation there. Rhoda Grant talked about what Highland hospice is doing with its phone lines. I have also spoken to St Margaret’s hospice in Marie McNair’s constituency about the ambulance service that it is providing. We are looking at all that, and it is about understanding the breadth of services that hospices are providing. I have been trying to listen and learn about that.

In planning for the future, we must be cognisant of the challenges of the present. I understand the financial pressures that hospices face, and I have shared with Scottish hospices the financial challenges that we as a Government face. As Rhoda Grant rightly highlighted, there are differences across the sector, which I am examining.

On 17 August, as many people have said in their speeches, I wrote to the Scottish hospice leadership group and Hospice UK to inform them that, unfortunately, their request for £15.5 million was not affordable, given that the Scottish Government is facing the most difficult financial situation since devolution. My reason for sending that letter was to have a level of honesty with them and be able to start discussions, which was incredibly important. It is also important to reflect that it is the responsibility of integration joint boards, including locally elected representatives, to make informed decisions on how best to resource services, including hospice services, to meet the needs of their local communities, given the budgets that are under their control.

However, I have also been clear that we are keen to support the hospice sector where we can. As many members mentioned, yesterday, I met representatives from Scottish hospices and health and social care partnerships to discuss in more detail the challenges that hospices face. We shared a draft national framework to support a more consistent approach to local governance, commissioning and resourcing between integration joint boards and independent hospices. It was clear from the discussions not only that there were some strong relationships between health and social care partnerships and independent hospices but that we all need to do more to promote and support those relationships. That includes local authorities, health boards, health and social care partnerships and Government. Bob Doris and Sharon Dowey emphasised the importance of that collaboration.

I welcome the open, frank and honest discussions that we had yesterday. We agreed on the need for more clarity about roles and responsibilities, nationally and locally, in relation to strategic planning for palliative care, and more specifically to commissioning hospice services. The representative of one of the health and social care partnerships said that they would bring the discussion to their meeting next week. That is positive. We have raised the issue and health and social care partnerships are listening—I hope that it will now rise up their agendas.

On 12 December, we have a specialist palliative care meeting, and there will be more meetings with health and social care partnerships in the new year. I think that the hospices and the health and social care partnerships welcomed that open dialogue yesterday. I have asked my officials to reflect on the issues further, particularly through the development of new national framework guidance.

We are also developing the new palliative care strategy, which prioritises work to address leadership, responsibility and accountability for all palliative care across a complex landscape of partnerships and relationships. I hope that the strategy will be published in 2024.

As 2024 is long, can the minister give us an indication of when in 2024 the strategy will be published, given that hospices have already been waiting for it for two years?

I would love to give a more precise indication. I will go back to my officials to get the date, which I know is next year. We are working hard on that and I want to see it driven through. As Rhoda Grant said, people need choice—and that needs to be the right choice for them.

The overarching aim of the strategy is to ensure that everyone who needs it receives well-co-ordinated, timely and high-quality palliative care, care around death, and bereavement support based on their needs and preferences. That support should be available to anyone who needs it, regardless of age, illness or socioeconomic background. I reflect on what Roz McCall said about CHAS and the importance of the care that it provides. When I visited CHAS, there was a sibling there who was still getting support. That is very important.

As I said in the recent debate on the dying in the margins project, 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 the Scottish Government ensures that adult disability benefit applications from people with a terminal illness are fast-tracked to provide them with the support that they are entitled to as quickly as possible.

It is also important to reflect on the importance of the dying in the margins project and debates such as this one in ensuring that we are talking about death and allowing people to start planning.

Once again, I thank all those working in hospices for the commitment and dedication that they show each day, often in extremely challenging and upsetting circumstances. I finish by offering my personal thanks for all that they do and for this debate, which is incredibly important.

Meeting closed at 18:13.