 The next item of business is a member's debate on motion 2197, in the name of Colin Smith, on Marie Curie's report on challenging inequities and palliative care. The debate will be concluded without any questions being put. May I ask those members who wish to speak in the debate to press their request-to-speak buttons? I call on Colin Smith to open the debate around seven minutes, please, Mr Smith. Thank you, Presiding Officer. Can I refer members to my register of interest where it states that I was employed by Parkinson's UK when I was elected to Parliament, but that employment has ceased. I want to begin by thanking members from across Parliament for supporting my motion, allowing what is a timely debate on palliative care to take place today. It's just over a year since the Health and Sport Committee published its third and far-reaching report, We Need to Talk About palliative care. That was followed by the publication of the Scottish Government's strategic framework on palliative care and end-of-life care, a framework with a vision that everyone in Scotland who needs care has access to it by 2021, a vision that I know all members share and support. It's an opportune time to take stock to reflect on what progress has been made in achieving this vision and what more needs to be done over the next five years to ensure that it becomes a reality. Marie Curie's excellent report on enough for everyone challenging inequities and palliative care is an important contribution to that debate. It brings together the key findings from discussions from a seminar held on 15 September 2016 by Marie Curie, where more than 70 experts from across the country came together to talk about the challenges of inequities in palliative care and to seek solutions. The report highlights the research that was commissioned by Marie Curie and published by the London School of Economics in 2015 that showed that it is estimated that one in four people in Scotland who die miss out on vital palliative care. That's an estimated 11,000 people in Scotland who need palliative care each year but don't receive it. It's also important to recognise the benefits of specialist palliative care for people with long-term conditions such as Parkinson's and other progressive neurological conditions from the point of diagnosis and not just for those requiring end-of-life care. It's clear that over the next five years over 55,000 people in Scotland may not receive the palliative care that they need if we do not ensure that the vision of care for everyone who needs it is delivered. By delving below those figures and highlighting the barriers those who receive less care than others with comparable needs, the work by Marie Curie makes a significant contribution to the debate on how we can deliver that vision. Although it's not an exhaustive list, the report shows specific groups of people less likely to receive palliative care, including those over 85, those from Black, Asian and minority ethnic communities, those who live alone and those who live in areas of deprivation. If we look at each of those groups in turn, we can see some of the reasons for those inequities. In Scotland, nearly 82 per cent of deaths occur in people over 65, yet older people are much less likely to receive the palliative care that they need at the end of life when compared to younger age groups. Marie Curie highlighted a number of reasons for that, including the fact that all too often older people may think that their illness is just them getting old. There are also factors around the underreporting of serious illnesses and the under-identification of older people for palliative care. That becomes more complex around the issue of frailty with frail older people often dying without a defined single terminal illness and without receiving the benefits of palliative care. A number of recommendations are made in the Marie Curie report to help tackle that. For example, providing clearer information for older people as to what services are available to them and how to access them. More effort is needed to identify triggers for palliative care in older people, particularly those with frailty. Practitioners need the right training and support to ensure that those who require palliative care are identified from the point of need. The challenges of inadequate training and support has also been identified by Marie Curie as creating a barrier to palliative care for those from Black, Asian, minority and ethnic backgrounds. There are now more than 200,000 people living in Scotland from a BAME background, double the level of 2001. However, many do not access the palliative care when they need it. The Marie Curie report highlights the fact that, when people do receive care, it is not always sensitive to the different cultural and religious needs of BAME groups. There is also fear of discrimination, a lack of translation services and a shortage of female doctors for Muslim women. As well as more training and support for those providing palliative care, Marie Curie highlights a need for more research at ground level in the field of care to ensure that the needs of those living in BAME communities are being identified and evidence-based solutions are found to meet those needs. Research that is funded by Marie Curie into access to palliative care for lesbian, gay, bisexual and transgender people also found that discrimination and a fear of stigma was a factor when it came to accessing palliative care for LGBT people. There is also a clear disparity in the access of health and social care services between those living in the most and least deprived communities throughout the country. For example, the report highlights that those living in the most deprived communities are 33 per cent less likely to die at home compared to those living in the least deprived communities. Again, a number of reasons are given as to why people from deprived communities may not be accessing palliative care in the Marie Curie report. The need for far more public health and social care support in deprived areas is recommended as one way to help to break down those barriers. It is clear from the report that there are significant inequities when it comes to the provision of palliative care across Scotland. If we are to meet the 2021 vision, we need to break down those barriers. The Marie Curie report highlights a number of recommendations and common themes that can help us to do that. One such theme is about research and data. Professor David Clarke, who members will know, leads the University of Glasgow's end-of-life studies group based in Dumfries, stated in the report for the Health and Sport Committee in 2015 that a serious information deficit needs to be filled on data relating to the provision of palliative care in Scotland. There is clearly a distinct lack of research and palliative care compared with other health issues. I am pleased that the Government acknowledges that in the strategic framework, so I hope that when the minister is responding to the debate today, she can outline how the Scottish Government plans to support the development of an evidence base to show progress towards its 2021 vision. The forthcoming national review of health and social care targets also provides an opportunity to reconsider the current indicators that are used by health and social care partnerships when measuring palliative care to ensure that better data can be collected to fully measure the inequities that exist. For example, measuring access by clinical condition and social economic group. Breaking down the barriers that are highlighted by Mary Curie means providing personalised, effective palliative care in a setting that suits the individual. It was encouraging to read in the Government's health and social care delivery plan that was published last month that the availability of care options will be improved by doubling the palliative and end-of-life provision in the community. I hope that the minister will outline how exactly that can be achieved, while it, for example, means additional resources for integrated joint boards to scale up their palliative care provision in the community. The final theme that I want to touch on that comes from the report is once again the fact that talking about palliative care and dying does not come naturally to many including myself, even though death is the most unavoidable event in our lives. Of all the areas in the Government's framework, I think that this area is the one that least progress has been made. The Health and Sport Committee wrote to the cabinet secretary on 16 November about progress in the implementation of the framework, and in the reply, the cabinet secretary said that the Government did not plan to run a national campaign in relation to death and dying. I therefore would be keen to know from the minister how the Government intends to deliver the equipment to support greater public discussion on death and dying care at the end of life. I am very conscious of time, although I have only been able to touch on a fraction of the issues in the report, and no other members will more than adequately fill the gaps that I have left. I look forward to listening to those contributions and also to listening to the minister on the points that I have raised. In conclusion, I want to place on record my thanks to Marie Curie not only for her work on the report that we are debating today, but for the outstanding care and support that she provides for over 8,000 people and their families across Scotland. Those thanks extend beyond Marie Curie to all the organisations involved in the delivery of palliative care, whether they are a charity, or an amazing NHS staff, or a local council third, or a private sector social care provider. The focus on my contribution has been on tackling the inequities in the provision of palliative care, but I know that tens of thousands of families benefit from the outstanding palliative care being delivered across Scotland every year. However, we are ambitious, and that is why we are all determined to see the Government ensure that care is there for everyone who needs it, wherever they live and whatever their background. I would move to the open speeches of around four minutes, please. Can I have Bob Doris, followed by Donald Cameron? Thanks, Presiding Officer, and I start by thanking Colin Smyth for bringing this matter to Parliament today, and also to Marie Curie for the excellent report on challenging inequalities in palliative care. I was the deputy chair of the Health Committee when that report was drafted. I am currently, along with Colin Smyth, on the cross-party group of palliative care, but I want to speak today from a more personal point of view. In December 2015, my mum passed away, frail, elderly and admitted to a care home a year earlier. The underlying reason for passing away was vascular dementia, mum passed away and a hospital. In May 2016, my dad passed away as a Margaret's Hospice in Clydebank. He had been diagnosed with lung cancer a few months earlier. I mentioned them for two reasons. First, I like talking about them. I think that it's important that we continue to talk about people who have lost that part of dealing with grief, but also because they are two very different end-of-life pathways if you like in relation to palliative care. The motion before us and Marie Curie's report believes that more needs to be done to identify the triggers for when palliative care should kick in. I would contend that, quite often, it kicks in, but we don't call it palliative care. Indeed, there is no agreed definition of what palliative care actually is, and that's a bit of a stumbling block as well. In my dad's case, it seemed fairly clear that it was cancer and that it was terminal. Can you stay at home? That's just not a starter when you deteriorate. Let's look to see if a hospice place is available or be forever grateful for the support that St Margaret's and Clydebank gave to my father. However, we have to go beyond the traditional routes to palliative care for certain types of terminal illnesses and cancers, obviously, one where there is a clear pathway and others not so much. I should put on record that Marie Curie's hospice is indeed in my constituency of Mary Helen Springburn, and they do an excellent job. In the past year, they have had 486 admissions, 30 beds, and they do a wonderful job not just in the hospice but across the wider community, with a lot of nurse specialists and a variety of support that they give my constituents, not just Mary Helen Springburn but others elsewhere. However, if we are to look at my mother's situation, staying at home didn't become an option for her. She had to go into residential care. We didn't think at the time that it was because of the vascular dementia. We just saw a frail elderly lady, but vascular dementia is terminal. I have no idea if my mother counted as receiving palliative care or not. There was a well-intentioned muckiness around it, because care home staff don't like to talk about your loved one will eventually pass away. What happens if her heart gives way? That's not what happened incidentally, but what happens if her heart gives way? Do you want her to be resuscitated? Those are really challenging conversations that are not just clinically-led conversations, but often relatively low-paid care staff. Care homes have chats with families about what they would like to see with loved ones. The more general point that I want to make is that I think that every day of the week there are amazing contributions to palliative care happening at home with care at home staff, care home staff and hospice staff and beyond. I don't think that we count it. I don't think that we define it. I don't think that we always appreciate it and a lot more has to be done. It's also worth saying that I think that Professor David Clark was quite right in his powerful report that he did for the Health and Sport Committee, but he also said that we should remember that palliative care in Scotland is probably still, and this is not a boast, I have to say, probably about the best in the world. Everyone's playing catch-up, but there's so much more we have to do. We haven't even began scratching beneath the surface. I will give one final comment. Not everyone is going to get the specialist palliative care. It doesn't mean that you go to a hospice, but hospices have a huge contribution to making to the wider community, whether they become hubs of the wider community and have strong networks with local care homes and local care home providers and care staff that support those frail elderly at home. We should draw on their excellence and expertise, but we should expand what we do in the community. However, the biggest thing that we have to do in the community is to talk about death and dying and appreciate the fantastic work that already goes on out there. I thank Colin again for bringing this debate to the Parliament. I look forward to working collegiately across all parties and with the Government to improve the situation in palliative care. I call Donald Cameron to be followed by Elaine Smith. Thank you, Deputy Presiding Officer. I begin by thanking Colin Smith for bringing this issue forward for debate. It is especially relevant, given the shifting changes that we are witnessing to the way that health and social care are delivered, and also in the spirit of the on-going debate as to how we deliver healthcare as a whole. I also commend Bob Doris for his eloquent description of his parents' deaths. That frank recounting of his own personal experience says far more than any dry statistic that I or others might recite. I would also like to thank Mary Curie for providing extensive evidence in advance of this debate, including some in-depth analysis that was already referred to into a variety of minority groups who faced particular challenges. I look forward to hearing the contributions of others in relation to this issue. However, I begin by talking about the way that palliative care is delivered in my own region, the Highlands and Islands, and I concentrate on the role of hospices in Scotland in particular. Despite the obvious challenges that my region faces on a daily basis, given its rurality and relative remoteness—whether that is about infrastructure or lack of clinical services or the struggle to attract professionals to take up jobs—we are lucky that we have incredible and dedicated staff in the public and charitable sectors who provide that quality and dignified end-of-life care to thousands of people each year. In the Highlands and Islands, charities such as Mary Curie work in close partnership with our NHS and provide support to two hospices in my region, the Highland Hospice in Inverness and the Bethesda Hospice in Stornoway. Across Scotland, as a whole, Mary Curie has four volunteer helper groups and a vital befriending service that pairs some of the near 2,000 volunteers with those who require care and additional support. Such support is vital and we must continue to improve what we offer to patients who require end-of-life care and also to their families. I have also been privileged to visit the Cowell Hospice Trust in Denun, which is located within the community hospital there. I have been there twice since the election and had the pleasure of meeting staff and seeing the facilities on offer. It is a small hospice, but it provides incredible palliative care to local people, meaning that residents do not have to travel long distances to receive end-of-life care and can remain close to family and friends. It is also a hospice with strong community backing and with premises and equipment largely funded through local fundraising efforts. However, the reality is that that is rather unique not only to my region but to Scotland as a whole. As hospice UK note in their briefing, access to hospice and palliative care in Scotland is not equitable with thousands missing out on the care that they need each year, and as the motion notes, that is about 11,000 approximately each year. In many instances, those who require specialist palliative care in rural and remote areas either have to travel, which can entail a variety of additional problems or need to rely on such care being provided at a primary care level by a local GP or a nurse. When I delivered my maiden speech to Parliament, I spoke about the need for a greater focus on delivering vital services to people, especially those who live on the periphery of Scotland. That is the challenge when we must face it head on. One example of how we could improve the accessibility to palliative care is by piloting the partnership for excellence in palliative support, the PEPS scheme, which has been trialled by Sue Ryder in NHS Bedfordshire in England and was supported in my party's manifesto at the recent elections. PEPS involves the creation of a 24-hour phone line for access to all palliative care services, and it brings together 15 organisations in a hub and spoke model. It is just one example of integrating existing services better and massively improving access to vital specialist information. I look forward to hearing other contributions today on how we develop palliative care in Scotland and to ensure that the issues raised in Mary Curie's report are not only given proper attention but that we move forward to finally resolving many of the issues that remain outstanding. Thank you very much, Presiding Officer. Scotland has many organisations and charities that focus on those, either in need of palliative care or coming to the end of their lives. That is a good opportunity to commend and thank them all for the work that they do, as Donald Cameron has done. Today, thanks to Colin Smith, we are looking specifically at Mary Curie's report enough for everyone, which has raised awareness of the inequities in access to palliative care. Mary Curie nurses offer much-needed care and support to people living with terminal illness in the comfort of their own homes. I am sure that we have all encountered the excellent work, whether as politicians or personally. It is also important that we recognise the great work that is done in hospices around Scotland. An excellent example of what we are reaching is St Andrew's hospice in Airdrie. The hospice provides care to people living with life-limiting illness and is free to all, regardless of age, gender or creed, and it supports families. It is a real example of the kind of care that the report would like to see across Scotland. Like myself and my husband, the hospice has just celebrated its peril anniversary. For the past 30 years, many families in the Lanarkshire area, including my own, have had experience of the exemplary care that they provide. I am also proud to be an ambassador for the hospital's capital appeal, which needs to raise £9 million to refurbish the inpatient unit. That is quite a task, because it is in addition to the £4.6 million that is needed every single year to continue what they do, supporting and caring for patients, their families and loved ones. They have produced a little book called Perils of Wisdom, which contains inspirational and thought-provoking contributions to help to raise funds. One of the quotes in the book is from Cecily Saunders, the founder of the modern hospice movement, if I could just share it with you, which says that it matters because you are you, and it matters until the end of your life. A much under-reported issue that I would like to touch on now is access to palliative care for babies, children and young people. That is identified by the children in Scotland-requiring palliative care study. It found that over 15,000 babies, children and young people aged 0 to 25 years live with life-shortening diagnosis, and that two thirds of them who die each year in Scotland do so without access to specialist palliative care and support. That is a very difficult issue to talk about. Colin Smyth referred to such difficulties earlier, but it is one that needs addressed. Overall, we must find ways to encourage people to access the palliative care that they need. The Marie Curie report tells us that people living in more socially deprived areas are much less likely to access health and social care services, and that includes children and young people. I am sure that most people in the chamber, most members, in fact all of us, would agree that it is unacceptable that people are dying in hospital waiting in social care packages, so it is imperative that people are properly supported to live and die at home as they wish to. Everyone who is affected by terminal illness should have access to all of the care and support that they need, regardless of their personal circumstances, and that includes palliative care. I am going to finish by picking another pearl of wisdom from the book to share with the chamber. Sometimes what a person needs is not a brilliant mind that speaks but a patient heart that listens. I thank all the kind and patient-hearted staff and volunteers who provide palliative and end-of-life care. I urge the Government to quickly make their vision a reality so that everyone who needs palliative care has access to palliative care in an equal way. I thank Colin Smyth again for raising this vital and important issue in the chamber. I also thank colleagues for their moving and well-informed contributions. I am very pleased to contribute to today's debate. I especially thank Mary Curie, Sue Ryder, the Royal College of Nurses and Hospice UK for their excellent briefings on the important issue. Mary Curie's report into the inequalities in accessing palliative care is timely and it highlights where our focus needs to be to ensure that our health service not only strives to allow everyone to live well but to die well. Around 54,000 people in Scotland die each year. With an increasingly ageing population, the figure is set to rise with the Government anticipating a 12 per cent increase by 2037. The demands for end-of-life care will surely grow in response to that, as will the needs of those seeking palliative care. From palliative care's roots in the 1960s, providing meaningful pain management, care and emotional support to those with terminal cancer, today's palliative care must meet the challenges of a wide range of conditions. Mary Curie's report outlines how health and social care providers need to recognise the needs not only of those with terminal illnesses, but of those living with increasing frailty in their later years. Today's care must also respect and respond, and Colin Smyth spoke to this very well, to the cultural needs of different groups in our society, for example those of minority ethnic backgrounds and those identifying as LGBTQI. The report also notes that the challenges to accessing healthcare services faced by those living in areas of social deprivation extends into palliative and end-of-life care. The Government's strategic framework for action sets out the steps that we need to take to begin to set and measure indicators of palliative care provision across the country to ensure that everyone has access to the support that they need by 2021. It is that challenge of providing meaningful care to which I would now like to turn. Preparing for this debate, a common theme that has been raised across the third sector, across the NHS and Government, indeed in our neighbourhoods and communities, is the need for a more open culture around death and dying. Our healthcare workers will struggle to provide meaningful care if we are not ready to have frank and honest conversations about what a good death means to us as individuals, as families and communities. The Grasping the Nettle report from the Scottish Network for Palliative Care highlights that a cultural shift is needed for us to be willing to discuss these matters and that everyone has a part to play in bringing this about, not just care providers. The report says that too often our culture sees death as a medical failure. Blocking discussions about what it means to die well and how our services can fulfil that need. While the current policy focus on increasing independence in old age is essential for our aging society, I believe that that must also be balanced with policies and actions that recognise that sometimes ill health and death is inevitable. I know that the Minister for Public Health attended the realistic medicine event that probably several of us were at last night. I think that that shared decision making around some of those big issues and the opportunity to have a positive discussion about quality of life and what it means is truly welcome. Presiding Officer, we need to ensure that primary health workers have all the training and support that is required to open those compassionate discussions about what treatment and emotional support a person may want at the end of their life. Everyone should have the opportunity to plan ahead to tell their carers what matters to them personally. Grasping the nettle report and Sue Rider recommend a 24-7 helpline to palliative care professionals for patients to ensure that people feel that they have a sense of autonomy and control in making important decisions about the end of their lives and the care that they would like. In closing, I too would like to thank those who work tirelessly in providing end-of-life care, whether they are in the centre for integrative care. Hospice staff, such as Bob Doris, who have visited the excellent Marie Curie hospice in my region here in Edinburgh, are NHS professionals. All those who work in care, Scotland's many paid and unpaid carers. I look forward to the minister's comments on how we can progress those issues. Just before I call Richard Lyle, in view of the number of members wishing to speak in today's debate, I would be minded to accept a motion under rule 8.14.3 to extend the debate by up to 30 minutes. Can I ask Colin Smyth to move such a motion? Members in agreement. No one having disagreed, I extend the debate understanding order rule 8.14.3. Richard Lyle, to be followed by Dean Lockhart. Thank you, Presiding Officer. I begin my remarks this afternoon by welcoming this debate on the Marie Curie report and, of course, congratulating Colin Smyth on bringing this important topic to the chamber. I also wish to thank the Royal College of Nursing, Sue Ryder, Alzheimer's Scotland and Marie Curie for their briefings. I pay particular tribute to the service in Lanarkshire, which Marie Curie provides 448 patients seen in 4,164 visits, 24 seven-plan nursing service, 61 nurses in Lanarkshire, 93 per cent of patients supported by Marie Curie dying in the place of choice. Other agencies provide care in my area, but I know that Marie Curie supports the people of Lanarkshire well. Marie Curie lives up to what I would suggest is its mission statement. Marie Curie is here for people living with any terminal illness and their families. Part of care is wide-ranging. I want to focus on an area in relation to the topic that is of a particular interest to me and that is dementia. Bob Doris spoke very well in his speech regarding his mum's dementia. Indeed, it must be noted that, as life expectancy of people in Scotland increases, it is likely to mean that more people will experience dementia and the proportion of people dying with dementia will also grow. With that in mind, in November 2015, Alzheimer's Scotland published its advanced dementia practice model, which sets out a model for providing integrated personal centre care for people with advanced dementia and, at the end of life, which responds to the complexity and the intensitivity of advanced illness and dementia. That model is due to be tested as part of the implementation of the Scottish Government's strategic framework for action on palliative and end-of-life care, a framework that I not only welcome but commend the Scottish Government on implementing to ensure that we are dealing with this sensitive issue in the way in which the Scottish people would expect. It is also important that we in this chamber recognise that many people dying with dementia will also have other conditions requiring a care response. Whether dementia is not only their primary concern, it will have an impact on their experience or other conditions in any treatment that they receive and we must be prepared to deal with those situations. In the remainder of the time that I have in this debate, I wish to reflect on the Scottish Government's work and recognise the development nature of addressing dementia as it formulates health policy here in Scotland. The SNP Scottish Government published in March 2016 the proposal for Scotland's national dementia strategy, which was framed through the stakeholder engagement to identify the key areas that the Government can deliver for those with dementia. The strategy identified through stakeholder discussion that a Government should continue to focus on our national and local human rights, based approach to improve dementia diagnosis rates and services and supports at all stages of this illness and in all care settings. That should continue to be underpinned by the right-based approach to developing and upskilling the dementia workforce through implementing promoting excellence and the standards of care for dementia in Scotland. That is an important issue, as framing our action on dementia within a rights-based approach is absolutely the way in which we must take these matters forward. That, I believe, gets to the heart of what Colin Smyth's debate today is about, inequalities. If we are to adopt a rights-based approach, then we must continue to address such inequalities. Therefore, we know the issue of dementia and palliative care are deeply underpinned by the need to enshrine human rights as a fundamental pillar to what is being done. That is why the integration of advanced dementia practice model by the Scottish Government into the Scottish Government's strategic framework is so important. It recognises that human rights are a fundamental aspect to understanding the citizenship and the rights of people. I want to conclude this afternoon by once again thanking Colin Smyth for bringing in the important issue to the chamber. He is allowing me to reflect on the work that the Scottish Government is doing in dementia care and how we can continue to work together to improve the approaches that are undertaken on the most important of issues. I would also like to thank Colin Smyth for leading this important debate on maricuri and the report on challenging inequities in palliative care. As Donald Cameron said, I would also like to thank and recognise Bob Doris for his personal and powerful contribution in this debate. This debate gives us the opportunity to acknowledge and appreciate the invaluable work performed by maricuri nurses, staff and volunteers on behalf of everyone who has received their assistance, including people living with terminal illness, their families and loved ones. Equally importantly, this debate gives us the chance to highlight some of the challenges that maricuri has to address going forward, in particular the various barriers certain groups and society face in accessing palliative care. Despite the widespread recognition and deep appreciation of the palliative care services that maricuri delivers, the fact remains that there are still some 11,000 people who need palliative care in Scotland each year but who do not benefit from it. In other words, as Colin Smyth highlighted, one in four people died in Scotland without end-of-life care that they need. To address the gap in palliative care, research commission by maricuri has highlighted the inequality of access to that care across certain groups in Scotland. The fact is that certain groups of people receive less palliative care than others with a comparable need. As others have mentioned in this debate, that includes older people, black Asian and minority ethnic groups, LGBT people and people living in deprived areas. Another group that does not receive the palliative care required are people who have mental health conditions. Vulnerability to mental health issues is significantly increased for people living with a terminal illness, and that can often go untreated and unsupported. People often develop mental health issues as a result of their terminal illness, and there are many people suffering in this area who are not getting the support that they need. That was highlighted to me as a major challenge when I spoke to Marie Curie earlier this week. It is therefore increasingly important that we ensure that there is a range of support available for those who need end-of-life support. That includes access to psychiatrists and counsellors, as well as suitable medication. It is also crucial that we see more support for families and carers of people with a terminal illness and the further integration of health and social care services. On the issue of integrated health and social care services, I am pleased to highlight the success of a Marie Curie hospice at home pilot that has recently been implemented in my own region of Fife. The pilot in Fife was introduced to complement existing Marie Curie services, and it has three key elements to it. First of all, a managed care service with nursing care for patients and carers, which is what most people associate with Marie Curie. Secondly, and this is where it is an innovative scheme, it also offers a fast-track discharge service, which includes emotional support and practice assistance following a patient's discharge from hospital. Thirdly, the Marie Curie helper service provides companionship, emotional support and practical information by trained volunteers. All of that together is a very powerful service. The hospice at home service in Fife provided over 4,000 visits per year and meant that many more patients were able to return home from hospital in their final days. I do not want to quote numbers here, but it is important to highlight that 74 per cent of patients were able to leave hospital under the pilot scheme compared to 30 per cent previously. Everyone will agree that that is a great improvement. The Fife hospice at home pilot is a great example of integrated health and social care, and I commend everyone at Marie Curie involved in the pilot scheme. I hope that that can be expanded to other areas in Scotland. It is a testament to the hard work and forward thinking of everyone at Marie Curie. I thank Colin Smyth for bringing this important debate to the chamber and, as other members have said, I extend my thanks and best wishes to everyone across Scotland in providing palliative care and their valuable and invaluable support in this area across Scotland. The last of the open debate speakers is Monica Lennon. I would also like to echo colleagues in welcoming the opportunity to have this debate today and pay tribute to my colleague Colin Smyth for raising the important issue. The Marie Curie report on challenging inequities in palliative care is a welcome and sobering recognition of the problems that many patients face when accessing palliative and end-of-life care. I feel like I've learned a lot already from colleagues' contributions today, particularly thanks to Bob Doris, but also from the briefings that we've had from Marie Curie, Royal College of Nurseries, Hospices UK and others. We know that deeply entrenched inequalities unfortunately exist in many areas of life right across Scotland, and deprivation is often the major precipitating factor that affects that. People from deprived areas already suffer from disproportionate health concerns and access to health and social care services. Sadly, this is no different when palliative care is considered. Despite the fact that people in Scotland's poorest communities are much more likely to have numerous hospital visits to require palliative care and dying hospital, areas with multiple deprivations have fewer referrals to palliative care service, even when similar diagnoses are made compared to less deprived areas. That is troubling, and I support the calls from Hospices UK and others for more support to be given to improving the data on the barriers to care that people experience. It's equally concerning that the report highlights the existing patterns of discrimination experienced by Black, Asian, minority ethnic people and LGBTI people, as Colin Smith and others have highlighted, which can contribute to the lower levels of palliative care that are received within those groups. More research needs to happen to allow us to better understand this problem and how it can indeed be solved. Elaine Smith made an important contribution highlighting the needs of babies, children and young people in particular. Dean Lockhart has just touched on it, but I think that it should also be reinforced that a significant issue in palliative care is the consideration of mental health. The report notes that at least 10 per cent of suicides are linked to terminal or chronic illness. In addition, those living with severe mental illness tend to die earlier than the average population, and existing mental health issues can be made worse by physical illness. Mental health can affect those living with terminal illness in a number of distinct ways. Mental health problems such as depression and anxiety can of course be triggered by the diagnosis of terminal illness and in turn make physical conditions worse. There is also a wider issue regarding the mental health of family and carers through the course of their loved ones condition and subsequent bereavement. Palliative care is a holistic treatment that is well placed to be in keeping with approaches that treat mental health and parity of esteem with physical health, but any approaches to improve the inequity of provision should be mindful of that going forward. I hope that the Scottish Government will be mindful of Mary Curie's calls for a fourth stage in the mental health strategy for dying well to ensure that patient carers' family and friends are given adequate support throughout the patient's condition and subsequent bereavement. Those who are dying with a mental health issue can often be overlooked as part of the conversation, and I hope that that will change with the forthcoming strategy. In order to make those changes, there are a number of steps that can and must be taken if we are to achieve the vision set out in the Scottish Government's framework for action on palliative and end-of-life care, that everyone who needs that type of care will receive it by 2021, and many of those have been outlined by hospices UK. I am mindful for a time when there was more that I wanted to say, but I appreciate the timespinning that is already today. Again, I would like to pay tribute to local hospices in my area, South Lancer Cobright Hospice, as is my nearest hospice Elaine Smith has mentioned, St Andrew's. I think that we all appreciate the fantastic work and the fundraising that goes on as well, but I will finish there, and again, thanks to colleagues for their contributions today. I now call Eileen Campbell to close the debate. Around seven minutes, please, minister. Thank you, Presiding Officer. Unlike others, I also welcome the enough for everyone report produced by Marie Curie, and I thank Colin Smyth for bringing forward that motion. The other members of the palliative and end-of-life care cross-party group and other members more generally for their contributions to the debate this afternoon. I think that the openness of this debate perhaps is in contrast to the fact that, as a nation, we are not often great at discussing death and dying. We are often reserved and private, which has not helped us to face the certainty of the death that all of us know and love with the clear sighted and practical compassion that it calls for. I would also like to particularly thank, as others have, Bob Doris for his contribution and the openness about the recent passing of both his parents. I would also like to thank as well Alison Johnson for her remarks, and I agree with her that this debate fits well in with the empowering discussions that our medical services need to be having with people as part of that realistic medicine approach. The findings of the Marie Curie report are important and will help us all to move forward on our shared vision of ensuring that everyone, including those who have not been accessing palliative and end-of-life care, do indeed get access to it. The demand for good person-centred care is growing. We have more people in Scotland living longer, and that is a good thing. As we grow older, more of us grow frail, with multiple long-term conditions involving specific palliative care needs—needs that the report shows are not always being met. We want a fairer Scotland, and that report reminds us of the challenges that we face and which we are taking concrete steps to address—that rights-based approach that Richard Lyle described. We are committed to understanding the needs of our different communities, and we want to eliminate discrimination, reduce inequality, protect human rights and build good relations by breaking down barriers that may hinder people and prevent them from accessing the care and the services and the supports that they need. Our strategic framework for action on palliative and end-of-life care was published in December 2015, and it set out our vision that by 2021, everyone in Scotland will have access to high-quality palliative and end-of-life care, which is tailored to their individual circumstances, support that meets the needs of their point of needs. Wherever that personal situation or individual characteristics may be, it is what each of us would want for ourselves or those we care about. A tailored approach is absolutely critical if people are to have the benefit of high-quality palliative and end-of-life care, regardless of their age, their mental health points that were made by Dean Lockhart and Monica Lennon, their wealth or poverty or where they live. Any response to the needs that we face will require meaningful engagement with local communities and with our Scottish society as a whole, building on the endowed assets and strengths that we have across all of our communities. It is therefore essential that we create the right conditions nationally to support the local communities in their planning and the delivery of palliative and end-of-life care services to help to ensure that the unique characteristics of each individual are met. That is reflected in our framework for action, which contains a series of commitments to help to improve palliative and end-of-life care in ways that are sustainable and work for both the Scottish population as a whole and for those groups that are identified in the report. We have already done much national work to facilitate and support the local planning of palliative and end-of-life care services through the integration of health and social care, one of the most significant reforms since the establishment of the NHS. Integrations authorities bring together NHS boards, local authorities and others to ensure the delivery of efficient and integrated services. Such services, including palliative and end-of-life care services, are commissioned in response to the needs and choices of people and communities based on real, local understanding and flexibility. Key to the success of the work is the ability of integration authorities' power to drive forward real change. They will manage more than £8 billion of resources that NHS boards and local authorities previously managed separately, representing more than 50 per cent of territorial health boards expenditure and more than 80 per cent of local authorities social care expenditure. With a greater emphasis on community-based and more joined-up care, integration aims to improve care and support for those who use health and social care services. That will help to better equip providers of local palliative and end-of-life care to meet the unique needs of each individual in their communities. That compassion that has been so evident in the services that Donald Cameron, Elaine Smith and many others described, and that innovation that was felt in the description of the fast-track service that Dean Lockhart spoke about in his remarks. I set out in our strategic framework for action that we have asked Healthcare Improvement Scotland to test and implement improvements in the delivery of palliative and end-of-life care. That work includes developing better ways to identify all those who might benefit from palliative and end-of-life care, especially the frail and the elderly. To date, five integration authorities, including Glasgow City, East Ayrshire and the Western Isles, are collaborating with Healthcare Improvement Scotland to live well in communities and to focus on dementia improvement teams to take that work forward. Of course, data is vital. Without it, we will not know whether people are indeed getting the palliative and end-of-life care that they need. That was a point that was made well by Bob Doris. Without it, local communities cannot commission services to meet their people's care needs and care plans remain hard to share. This data challenge is also recognised in our framework for action, which includes a commitment to support improvements in the collection, analysis, interpretation and dissemination of data and evidence relating to the needs, provision, activity, indicators and outcomes in respect of palliative and end-of-life care. Our working group is tasked with clarifying the data requirements to ensure that they are valuable for both individuals receiving care and to assist integration authorities in planning, commissioning and improving their local services. Working with NHS Information Services division, the data group is also investigating a number of areas in which data collection can be improved. That will include exploring avenues for improving the data available relating to specific groups of people, including those that were identified in Mary Curie's report. Ilein Smith, I thank the minister for taking the intervention. Is it difficult to discuss whether that will include a particular focus on children and young people from deprived areas who seem to be a particular group that does not access appropriate care? Ilein Campbell I will take on board the point that the member makes from a previous portfolio. I know that that will be work that might be of interest to Mark McDonald in the early years. Through that portfolio, there is an awful lot of support for cruise bereavement counselling and others, as well as recognising one of the things that struck me in that time and that post around the support that siblings require. If there is a death of a child, often times they are the ones that are overlooked in the support that is required. I think that there is a whole host of other areas that we probably need to have an attention and focus on, particularly around child bereavement and child death. It is difficult to talk about, but I do not think that that is any excuse to shy away from the realisation that we always need to do as much as we can. I think that the GERFEC approach is probably quite appropriate for that and the points that Ilein Smith raises as well. Finally, in the moments that I have left, I want to turn to the values and the skills that people need from our health and social care staff. I started at the start and, as others have said, how hard we find it as a nation to discuss death and dying, yet it is a skill at having these difficult conversations, which is absolutely critical for anticipatory care planning conversations. Having those conversations and sharing what matters to the person at the end of their life can make all the difference to how and where they die. The demanding and challenging staff development that is reflected in our framework contains a commitment to support the development of a new palliative and end-of-life care educational framework. NHS Education for Scotland's NES is working with the SSSE to develop a consistent approach to workforce learning and development and to sharing practice right across the country. Lastly, I want to say a bit about palliative and end-of-life care research. That was a big focus of Colin Smyth's remarks. As part of the framework that is set out in our framework, we have established a research forum that will complement the aims of the framework. We have provided funding to support the group to undertake a systematic review of more than 400 relevant research studies to help us to develop a clearer picture of research and data gaps and to support improvement. Uniquely among the devolved nations, the Scottish Government has also committed funding for a strategic collaboration with Mary Curie. That funding supports a call for research projects addressing priority areas addressed by the James Lind Alliance priority setting partnership and palliative end-of-life care. Two research projects to date have been successful in obtaining funding, and those will be announced shortly. All of those will be helpful in realising the vision for palliative care, adding to the existing evidence base around palliative and end-of-life care. In closing, I again welcome the opportunity to respond to this report from Mary Curie and, naturally, welcome Mary Curie's support for the Government's strategic framework. To close with the words read by Elaine Smyth that we all, I think, can unite behind, you matter until the end of your life. Our job now, though, is to make that a reality. This meeting is suspended until 2.30pm.