Meeting of the Parliament

Meeting date: Thursday, January 12, 2017

Official Report 1036KB pdf

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Inequities in Palliative Care

I ask those leaving the chamber, both in the public gallery and on the main floor, to do so quietly. Thank you.

The next item of business is a members’ business debate on motion S5M-02197, in the name of Colin Smyth, on the Marie Curie report on challenging inequities in palliative care. The debate will be concluded without any question being put.

Motion debated,

That the Parliament welcomes the Marie Curie report, Enough for everyone – Challenging inequities in palliative care, which highlights the findings of a seminar held on 15 September 2016; notes that the seminar focused on examining some of the barriers certain groups face in accessing palliative care; understands that 11,000 people who need palliative care in Scotland each year are not accessing it, meaning that one in four people who die in Scotland miss out on the palliative care they need; further understands that certain groups of people receive less palliative care than others with a comparable need and that this is now the responsibility of health and social care partnerships; considers that more effort should be made to identify triggers for palliative care in older people, particularly those with frailty; further considers the need for planning, developing and commissioning services to identify and reflect the palliative and end of life care needs of black and Asian people and other ethnic minorities; understands that there is still a lack of data on the level of need for palliative care for LGBT people in Scotland; further understands that people living in socially deprived areas are much less likely to access health and social care services; considers that more research must be done to understand the obstacles to palliative care in socially deprived areas; notes the report’s finding of the need for greater recognition of the issues relating to isolation, loneliness and spiritual needs in the delivery of palliative and end of life care; notes the view that more research needs to be done around certain groups who are less likely to access palliative care, and further notes the vision set out in the Scottish Government’s Strategic Framework for Action on Palliative and End of Life Care (2016-2021) that everyone who needs palliative care in the South Scotland region and across the country has access to it by 2021.

12:51  

I refer members to my entry in the register of members’ interests, which states that I was employed by Parkinson’s UK when I was elected to Parliament. That employment has ceased.

I thank members from across Parliament for supporting my motion, allowing a timely debate on palliative care to take place today. It is just over a year since the Health and Sport Committee published its thorough and far-reaching report, “We need to talk about palliative care”. That was followed by the publication of the Scottish Government’s “Strategic Framework for Action on Palliative and End of Life Care”, with its vision that everyone in Scotland who needs such care has access to it by 2021; I know that all members share and support that vision. It is therefore an opportune time to take stock, to reflect on what progress has been made in achieving that 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, “Enough for everyone: Challenging inequities in palliative care” is an important contribution to that debate. The report brings together the key findings from discussions at a seminar held on 15 September 2016 by Marie Curie, where over 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, which estimated that one in four people who die in Scotland miss out on vital palliative care. That is an estimated 11,000 people in Scotland each year who need palliative care but do not receive it.

It is important to recognise the benefits of specialist palliative care, not just for those who require end-of-life care but for people with long-term conditions such as Parkinson’s, and other progressive neurological conditions, from the point of diagnosis. It is clear that over the next five years, more than 55,000 people in Scotland may not receive the palliative care that they need if we do not ensure that the vision of palliative care for everyone who needs it is delivered.

By delving below these figures and highlighting the barriers for those who receive less palliative care than others with comparable needs, Marie Curie’s work makes a significant contribution to the debate on how we can deliver that vision. Although it is not an exhaustive list, the report shows specific groups of people who are less likely to receive palliative care, including those aged 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 group in turn, we can see some of the reasons for those inequities. In Scotland, nearly 82 per cent of deaths occur in people aged over 65, yet older people are much less likely to receive the palliative care that they need at the end of life when compared with those in younger age groups. The Marie Curie report highlights a number of reasons for that, including the fact that all too often,

“older people may think their illness is just them getting old. There are also factors around the under-reporting of serious illnesses and under-identification of older people for palliative care”.

This 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. The Marie Curie report makes a number of recommendations to tackle that, for example by providing clearer information for older people regarding the services that are available to them and how to access them. More effort is needed to identify triggers for palliative care in older people, particularly in 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 challenge of inadequate training and support has been identified by Marie Curie as creating a barrier to palliative care for those from black, Asian and minority ethnic backgrounds. There are now more than 200,000 people living in Scotland from a BAME background—double the level in 2001—but many do not access palliative care when they need it. The Marie Curie report highlights the fact that, when people receive palliative care, it is not always sensitive to the different cultural and religious needs of BAME groups. There is also a 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 who provide palliative care, Marie Curie highlights a need for more research at ground level in the field of palliative care to ensure that the needs of those in BAME communities are identified and that evidence-based solutions are found to meet those needs.

Research that was funded by Marie Curie into access to palliative care for lesbian, gay, bisexual and transgender people found that discrimination and a fear of stigma were factors for LGBT people accessing palliative care.

There is also a clear disparity in access to health and social care services between those who live in the most and least deprived communities throughout the country. For example, the report highlights that those who live in the most deprived communities are 33 per cent less likely to die at home than those who live in the least deprived communities. In the Marie Curie report, a number of reasons are given for why people from deprived communities might not access palliative care, and the provision of far more public health and social care support in deprived areas is recommended as a way to break down those barriers.

It is clear from the Marie Curie 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 report highlights a number of recommendations and common themes that can help us to do that. One such theme is on research and data. Professor David Clark, who, as members know, leads the University of Glasgow’s end-of-life studies group based in Dumfries, stated in his report for the Health and Sport Committee in 2015:

“A serious information deficit needs to be filled on data relating to the provision of palliative care in Scotland”.

There is a distinct lack of research on palliative care compared with other health issues. I am pleased that the Government acknowledged that in its strategic framework and I hope that, when the minister responds to the debate today, she will 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 provides an opportunity to reconsider the indicators that are currently used by health and social care partnerships when measuring palliative care in order to ensure that better data can be collected to fully measure the inequities that exist, for example by measuring access by clinical condition and social economic group.

Breaking down the barriers that are highlighted by Marie Curie means providing personalised, effective palliative care in a setting that suits the individual. Therefore, it was encouraging to read in the Government’s health and social care delivery plan that was published last month:

“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 exactly how that will be achieved. For example, will it mean additional resources for integration joint boards to scale up their palliative care provision in the community?

The final theme from the report that I want to touch on is 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 strategic framework, that is the one in which 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 her reply, she said that the Government did not plan

“to run a national campaign in relation to death and dying”.

I am keen to know how the Government intends to deliver the commitment to support greater public discussion on death, dying and care at the end of life.

I am very conscious of time but, although I have been able to touch on only a fraction of the issues that are raised by the report, I know that other members will more than adequately fill the gaps that I have left. I look forward to listening to those speeches and to hearing from the minister on the points that I have raised.

I thank Marie Curie not only for its work on the report that we are debating today, but for the outstanding care and support that it provides for more than 8,000 people and their families around Scotland. Those thanks extend beyond Marie Curie to all the organisations that are involved in the delivery of palliative care, including charities and our amazing national health service staff as well as local council and third and private sector social care providers.

I have focused in my speech 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 that is delivered across Scotland every year. However, we are ambitious, which is why we are all determined that the Government should ensure that care is there for everyone who needs it, wherever they live and whatever their background.

13:00  

I thank Colin Smyth for bringing the debate to the chamber. I also thank Marie Curie for its excellent report on challenging inequalities in palliative care.

I was deputy convener of the Health and Sport Committee when its report was being drafted, and I am currently a member—along with Colin Smyth—of the cross-party group on palliative care. However, I want to speak today from a more personal perspective. In December 2015, my mum passed away. She was frail and elderly, and she had been admitted to a care home a year earlier. The underlying reason for her passing away was vascular dementia, and she passed away in hospital. In May 2016, my dad passed away at St Margaret’s hospice in Clydebank; he had been diagnosed with lung cancer a few months earlier.

I mention my parents for two reasons. First, I like talking about them—I think that it is important that we continue to talk about the people whom we have lost, as that is part of dealing with grief. Secondly, they experienced two very different end-of-life pathways in relation to palliative care.

The motion before us today and the Marie Curie report both express the belief that more needs to be done to identify the triggers for when palliative care should kick in. I contend that, quite often, it kicks in but we do not call it palliative care. Indeed, there is no agreed definition of what palliative care actually is, which is a bit of a stumbling block.

In my dad’s case, it seemed fairly clear—he had cancer, which was terminal. The first question, “Can he stay at home?” is a non-starter when someone deteriorates in that way. The next step is to see whether a hospice place is available, and I will be forever grateful for the support that St Margaret’s hospice in Clydebank gave to my father. However, for certain types of terminal illness, we must go beyond the traditional routes to palliative care. Cancer is an illness for which there is a clear pathway, but for other illnesses that is not so much the case.

Marie Curie’s hospice is in my constituency of Glasgow Maryhill and Springburn. It does an excellent job—in the past year it has had 486 admissions, and it has only 30 beds. Marie Curie does a wonderful job not just in the hospice but across the wider community, with a lot of nurse specialists who provide a variety of support to my constituents and to others elsewhere.

Looking at my mother’s situation, it was clear that staying at home was not an option for her and she had to go into residential care. At the time, we did not think that it was because of the vascular dementia—we just saw a frail elderly lady. However, vascular dementia is terminal. I have no idea whether my mother’s care counted as palliative care. There was a well-intentioned murkiness around it, because care home staff do not like to talk about the fact that your loved one will eventually pass away.

There are questions to be asked such as, “What happens if her heart gives way?”—incidentally, that is not what happened—and “Do you want her to be resuscitated or not?” Those are very challenging conversations that are often had not just with clinical staff but with relatively low-paid staff in care homes, who have chats with families about what they would like for their loved ones.

The more general point that I want to make is that, every day of the week, amazing contributions to palliative care are happening with the support of care-at-home staff, care home staff, hospice staff and others. I do not think that we count all those contributions or define them, and nor do we always appreciate them, so there is a lot more to be done in that respect.

Professor David Clark’s conclusions in the powerful report that he produced for the Health and Sport Committee were quite right. He said that we should remember that palliative care in Scotland is—this is not a boast, I have to say—probably still about the best in the world. Everyone else is playing catch-up, but there is still much more that we have to do. We have not even begun to scratch the surface.

I will make one final comment. Not everyone will get specialist palliative care, and not everyone has to go to a hospice. However, hospices have a huge contribution to make to the wider community. Whether or not they become hubs for strong networks of local care homes and care staff who support the frail elderly at home, we should draw on their excellence and expertise, while also expanding 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 to appreciate the fantastic work that is already being done.

Again, I thank Colin Smyth for bringing the debate to the Parliament and I look forward to all parties working collegiately with the Government to improve the situation in palliative care.

13:05  

I thank Colin Smyth for bringing forward a debate on an issue that is relevant to the shifts in how health and social care are delivered and the spirit of the on-going debate on how we deliver healthcare as a whole. In addition, I commend Bob Doris for his eloquent description of his parents’ deaths. That frank recounting of his personal experience says far more than any dry statistics that I or others might recite.

I also thank Marie Curie for providing extensive evidence in advance of the debate, some of which has already been referred to and which includes in-depth analysis of a variety of minority groups who face particular challenges. I look forward to hearing other members’ contributions to the debate.

I will talk about how palliative care is delivered in my region of the Highlands and Islands, and will concentrate on the role of hospices. Despite the obvious challenges that my region faces daily because of its rurality and relative remoteness on issues such as infrastructure, lack of clinical services and the struggle to attract professionals to take up jobs, we are lucky in that we have incredible and dedicated staff in the public and charitable sectors who provide quality and dignified end-of-life care to thousands of people each year.

In the Highlands and Islands, charities such as Marie 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, Marie Curie has four volunteer helper groups, which provide a vital befriending service that pairs some of the nearly 2,000 Marie Curie volunteers with those who require care and additional support. Such support is vital, and we can and must continue to improve what we offer to patients who require end-of-life care and to their families.

Twice since my election, I have had the privilege of visiting the Cowal Hospice Trust in Dunoon, which is located within the Cowal community hospital, and have had the pleasure of meeting staff and seeing the facilities on offer. The hospice is small, but it provides incredible palliative care to local people, which means that they do not have to travel long distances to receive end-of-life care and can remain close to family and friends. The hospice has strong community backing, and its premises and equipment are largely funded through local fundraising efforts.

However, the reality is that that hospice is unique in my region and in Scotland as a whole. As Hospice UK notes in its briefing, access to hospice and palliative care in Scotland is not equitable and thousands each year miss out on the care that they need—the motion notes that the total is approximately 11,000. Those in rural and remote areas who require specialist palliative care often have to travel for it, which can entail a variety of additional problems, or have to rely on such care being provided at primary care level by a local general practitioner or 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 that we must face head on. We could improve accessibility to palliative care, for example, by piloting the partnership for excellence in palliative support—PEPS—scheme trialled by Sue Ryder in NHS Bedfordshire in England, which was supported in my party’s manifesto for the recent Scottish elections. PEPS involves the creation a 24-hour phone line for access to all palliative care services and brings together 15 organisations in a hub-and-spoke model. That is just one example of how to integrate existing services better and massively improve access to vital specialist information.

Palliative care is a vitally important issue, and I look forward to contributions from across the chamber on how we can develop palliative care in Scotland and ensure that the issues that are raised in the Marie Curie report are given proper attention so that we can move towards resolving many outstanding issues.

13:09  

Scotland has many organisations and charities that focus on people who are either in need of palliative care or are coming to the end of their lives. This is a good opportunity to commend them and thank them all for the work that they do, as Donald Cameron has just done.

Today, thanks to Colin Smyth, we are looking specifically at Marie Curie’s report “Enough for everyone”, which has raised awareness of the inequities in access to palliative care. Marie Curie nurses offer much-needed care and support, in the comfort of their own homes, to people who are living with terminal illness. I am sure that we have all, as politicians or personally, encountered their excellent work.

It is also important that we acknowledge the great work that is done in hospices throughout Scotland. An excellent example in my region is St Andrew’s Hospice in Airdrie, which provides care to people who are living with life-limiting illnesses—free to all, regardless of age, gender or creed—and supports families. It is an example of the kind of care that the Marie Curie report calls for throughout Scotland.

As my husband and I have, the hospice has just celebrated its pearl anniversary. For the past 30 years many families in Lanarkshire, including mine, have experienced the exemplary care that it provides. I am proud to be an ambassador for the hospice’s capital appeal, which needs to raise £9 million to refurbish the inpatient unit. That is quite a task, because that sum is in addition to the £4.6 million that the hospice needs every year to continue the work that it does in supporting and caring for patients and their families and loved ones. To help to raise funds, it has produced a little book called “Pearls of Wisdom”, which contains inspirational and thought-provoking contributions. I will share with members one of the quotations in the book. It is from Cicely Saunders, who was the founder of the modern hospice movement. She said:

“You matter because you are you, and you matter until the end of your life.”

I would now like to touch on a much underreported issue—the need for access to palliative care for babies, children and young people, which was identified by the “Children in Scotland requiring Palliative Care” study. It found that more than 15,000 babies, children and young people aged zero to 25 years live with diagnoses of life-shortening illness, and that two thirds of those who die each year do so without access to specialist palliative care and support. It is a very difficult issue to talk about—Colin Smyth referred to such difficulties earlier—but it needs to be 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 who live in socially more deprived areas are much less likely to access health and social care services. That includes children and young people.

I am sure that all members agree that it is unacceptable that people are dying in hospital while they wait for social care packages. It is imperative that people are properly supported to live and die at home, if they wish to. Everyone who is affected by terminal illness should have access to all the care—including palliative care—and support that they need, regardless of their personal circumstances.

I finish by picking another pearl of wisdom from the book to share with members.

“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 make its vision a reality quickly so that everyone who needs palliative care has equal access to it. I thank Colin Smyth again for raising this vital issue in Parliament.

13:13  

I, too, thank Colin Smyth for bringing this important issue to the chamber this afternoon, and I thank colleagues for their moving and well-informed speeches. I am very pleased to contribute to the debate. I especially thank Marie Curie, Sue Ryder, the Royal College of Nursing and Hospice UK for their excellent briefings.

Marie Curie’s timely report on inequities in accessing palliative care highlights where our focus needs to be to ensure that our health service strives to allow everyone not only to live well but to die well. About 54,000 people die in Scotland each year. With an ageing population, that figure is set to rise—the Government anticipates a 12 per cent increase by 2037. The demand for end-of-life care will surely grow in response to that, as will the needs of those who seek palliative care.

Moving on from palliative care’s 1960s roots in providing meaningful pain-management care and emotional support to people with terminal cancer, today’s palliative care must meet the challenges of a wider range of conditions. Marie Curie’s report outlines how health and social care providers need to recognise the needs not only of people with terminal illnesses, but of people who are living with increasing frailty in their later years. Today’s care must also respect and—Colin Smyth spoke to this very well—respond to the cultural needs of the different groups in our society: people from minority ethnic backgrounds and those who identify as lesbian, gay, bisexual, transgender, queer and intersex. The report also notes that the challenges to accessing healthcare services that are faced by people who live in areas of social deprivation extend to 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, in order to ensure that by 2021 everyone has access to the support that they need. I now turn to the challenge of providing meaningful care.

In preparing for the debate, I saw that a common theme that has been raised across the third sector, the NHS, Government and 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, families and communities. The report “Grasping the nettle: What action can we take to improve palliative and end of life care in Scotland?” by the Scottish Partnership for Palliative Care highlights that a cultural shift is needed in order for us to be willing to discuss those matters, and that everyone—not just care providers—has a part to play in bringing that about. The report says that

“Too often, our culture sees death as a ‘medical failure’”,

thereby blocking discussions about what it means to die well and how our services can fulfil that need. Although current policy focus on increasing independence in old age is essential for our ageing society, that must be balanced with policies and actions that recognise that ill health and death are inevitable. I know that the Minister for Public Health attended the “realistic medicine” event that several members were at last night. Such shared decision making on big issues and the opportunity to have a positive discussion about quality of life and what it means are truly welcome.

We need to ensure that primary health workers have the training and support that are required to open up 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 and tell their carers what matters to them personally. The “Grasping the nettle” report and Sue Ryder recommend for patients a 24/7 helpline to palliative care professionals 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.

I, too, would like to thank the people who work tirelessly in providing end-of-life care, including staff in centres for integrated care, hospice staff—as Bob Doris did, I have visited the excellent Marie Curie hospice here in Edinburgh, in my region—NHS professionals and all paid and unpaid carers in Scotland. I look forward to the minister’s comments on how we can make progress.

In view of the number of members who wish to speak in today’s debate, I am minded to accept a motion under rule 8.14.3 to extend the debate by up to 30 minutes.

Motion moved,

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

Motion agreed to.

13:18  

I welcome the debate on the Marie Curie report and—of course—I congratulate Colin Smyth on bringing this important topic to the chamber. I thank the Royal College of Nursing, Sue Ryder, Alzheimer Scotland and Marie Curie for their briefings. I pay particular tribute to the service in Lanarkshire that Marie Curie provides: 448 patients seen in 4,164 visits, a 24/7 planned nursing service, 61 nurses in Lanarkshire, and 93 per cent of patients who are supported by Marie Curie dying in their 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 well to what I suggest is its mission statement:

“Marie Curie is here for people living with any terminal illness, and their families.”

Palliative care is wide ranging. In relation to it, I want to focus on an area that is of particular interest to me: dementia. Bob Doris spoke very well about his mum’s dementia; indeed, it must be noted that the increasing life expectancy of people in Scotland is likely to mean that more people will experience dementia and that the proportion of people dying with dementia will grow.

With that in mind, Alzheimer Scotland published in November 2015 “Advanced dementia practice model: understanding and transforming advanced dementia and end of life care” on providing integrated person-centred care to people who have advanced dementia and are at the end of life. The model responds to the complexity and intensity of advanced dementia and 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. I not only welcome that framework, but commend the Scottish Government for implementing it to ensure that we deal with this sensitive issue in the way that the Scottish people expect.

It is also important that we in the chamber recognise that many people who die with dementia have other conditions that require care responses. Where their dementia is not their primary concern, that will have an impact on their experience of other conditions and any treatment that they receive, so we must be prepared to deal with such situations.

For the remainder of my time, I wish to reflect on the Scottish Government’s work in recognising the developing nature of how we address dementia, as it formulates health policy here in Scotland. In March 2016, the Scottish National Party Government published its “Proposal for Scotland’s National Dementia Strategy 2016-19”, which was framed as a result of stakeholder engagement in identifying the key areas on which the Government can deliver for people with dementia. It was identified through stakeholder discussion that, in the strategy, the Government should continue to focus on our national and local human-rights-based approach to improving dementia diagnosis rates, services and supports at all stages of the illness and in all care settings, and that that should continue to be underpinned by a rights-based approach to developing and upskilling the dementia workforce through implementation of what is in “Promoting. Excellence: A framework for all health and social services staff working with people with dementia, their families and carers” and “Standards of Care for Dementia in Scotland”. That is important, because framing our action on dementia in a rights-based approach is absolutely how we must take these matters forward.

That, I believe, brings us to the heart of what Colin Smyth’s debate is all about: inequalities—which we must, if we are to adopt a rights-based approach, continue to address. As we know, the work on dementia and palliative care is deeply underpinned by the need to enshrine human rights as a fundamental pillar. That is why the Scottish Government’s integration of the advanced dementia practice model into its strategic framework for action on palliative and end-of-life care is so important; it recognises that human rights is a fundamental aspect in understanding the citizenship and rights of the people whom we are discussing.

Once again, I thank Colin Smyth for bringing this important issue to the chamber and allowing me to reflect on the work that the Scottish Government is doing on dementia care, and on how we can continue to work together to improve approaches to this most important of issues.

13:23  

I, too, thank Colin Smyth for leading this important debate on Marie Curie and its report on challenging inequities in palliative care. Like Donald Cameron, I also thank Bob Doris for his personal and powerful contribution.

The debate gives us the opportunity to acknowledge and appreciate the invaluable work that is performed by Marie Curie nurses, staff and volunteers on behalf of everyone who has received their assistance, including people who are living with terminal illness and their families and loved ones. Equally important, it gives us the chance to highlight some of the challenges that Marie Curie has to address, particularly the various barriers that certain groups in society face in accessing palliative care.

Despite the widespread recognition and deep appreciation of Marie Curie’s palliative care services, the fact is that, each year in Scotland, there are 11,000 people who need palliative care but who do not benefit from it. In other words, as Colin Smyth highlighted, one in four people who die in Scotland does so without the end-of-life care that they need.

To address that gap in palliative care, research that has been commissioned by Marie Curie has highlighted the inequality of access to palliative care among 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, those groups include older people; black, Asian and minority ethnic groups; LGBT people; and people living in deprived areas. People who have mental health conditions are another group that does not receive the necessary palliative care. Vulnerability to mental health issues is significantly increased for people who are 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 people from Marie Curie earlier this week.

It is, therefore, increasingly important that we ensure that a range of support is 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 there is more support for families and carers of people with a terminal illness and that health and social care services are further integrated.

On the issue of integrated health and social care services, I am pleased to highlight the success of the Marie Curie hospice at home pilot that has recently been implemented in Fife, which is the region that I represent. That pilot was introduced to complement existing Marie Curie services and it has three key elements. The first is a managed care service with nursing care for patients and carers, which is what most people associate Marie Curie with. The second element is innovative: a fast-track discharge service that includes emotional support and practical assistance following a patient’s discharge from hospital. The third element is the Marie Curie helper service, which provides companionship, emotional support and practical information, delivered by trained volunteers.

Those elements represent a powerful service which, last year, provided more than 4,000 visits and meant that many more patients were able to return home from hospital in their final days—I do not want to quote numbers, but it is important to highlight that 74 per cent of patients were able to leave hospital under the scheme, compared with 30 per cent previously, which I am sure that everyone will agree 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 who is involved in it and hope that it 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 again thank Colin Smyth for bringing this important debate to the chamber. Like other members, I extend my best wishes to everyone across Scotland who is involved in providing palliative care and thank them for their invaluable support in this area.

13:27  

I echo colleagues in welcoming the opportunity to have the debate and pay tribute to my colleague Colin Smyth for raising this 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 that I have learned a lot from colleagues’ speeches today—I particularly thank Bob Doris—and from the briefings that we received from Marie Curie, the Royal College of Nurses, Hospices UK and others.

We know that, unfortunately, deeply entrenched inequalities exist in many areas of life across Scotland, and deprivation is often the major precipitating factor that affects that. People from deprived areas already suffer disproportionately from health concerns and face issues with access to health and social care services. Sadly, that situation is no different in relation to palliative care.

Despite the fact that people in Scotland’s poorest communities are much more likely to have numerous hospital visits, to require palliative care and to die in hospital, areas with multiple deprivation have fewer referrals to palliative care services, even when similar diagnoses are made, than less deprived areas do. 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 is equally concerning that, as Colin Smyth and others have mentioned, the report highlights that the existing patterns of discrimination that are experienced by black, Asian and minority ethnic people and by LGBTI people can contribute to the lower levels of palliative care that are received by those groups. There needs to be more research to enable us to better understand the problem and how it can be solved.

Elaine Smith made a very important speech, highlighting the particular needs of babies, children and young people.

Dean Lockhart has touched on this already, but I want to reinforce the point that the consideration of mental health is a significant issue in palliative care. The report notes that at least 10 per cent of suicides are linked to a terminal or chronic illness. In addition, those living with severe mental illness tend to die earlier than the average population and mental health issues can be made worse by physical illness. Mental health can affect those living with a terminal illness in a number of distinct ways. Mental ill health problems such as depression and anxiety can be triggered by the diagnosis of a terminal illness and can make physical conditions worse in turn.

There is also a wider issue regarding the mental health of family and carers through the course of their loved one’s illness and the subsequent bereavement. Palliative care as a holistic treatment is well placed to be in keeping with approaches that give mental health parity of esteem with physical health. Any approaches to improve the inequity of provision should be mindful of such issues.

I hope that the Scottish Government will be mindful of Marie Curie’s calls for a fourth stage in the mental health strategy—“Die Well”—to ensure that patients, carers, family and friends are given adequate support throughout the patient’s condition and in their subsequent bereavement. Those with a mental health issue who are dying can often be overlooked as part of the conversation and I hope that the forthcoming strategy will change that.

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 that is set out in the Scottish Government’s “Strategic Framework for Action on Palliative and End of Life Care”, which is that by 2021 everyone who needs such care receives it. Many of those steps have been outlined by Hospices UK.

Although there is more that I wanted to say, I am mindful of the time and the fact that the debate has already been extended. I pay tribute to local hospices in my region. Kilbryde Hospice is my nearest hospice in South Lanarkshire, and Elaine Smith has mentioned St Andrew’s Hospice. We all appreciate their fantastic work and fundraising.

I close by thanking my parliamentary colleagues for their speeches today.

13:32  

As other members have done, I welcome the Marie Curie report, “Enough for everyone”. I thank Colin Smyth for securing the debate, and the other members of the palliative and end-of-life care cross party group—and other members—for their contributions to the debate this afternoon.

The openness of the debate contrasts with the fact that, as a nation, we are not often great at discussing death and dying. We are often reserved and private about such matters, which does not help us to face the certainty of the deaths of all those we know and love with the clear-sighted and practical compassion that is called for.

I would like to thank Bob Doris for his speech and his openness about the recent passing of both his parents. I also thank Alison Johnstone for her remarks. I agree that the debate fits well with the empowering discussions that our medical services need to have with people as part of a realistic medical 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 it, gets access to palliative and end-of-life care. The demand for good person-centred care is growing. More people in Scotland are living longer, which is a good thing, but as we grow older more of us grow frail, with multiple long-term conditions that have specific palliative care needs. The report shows that those needs are not always being met. We want a fairer Scotland and the report reminds us of the challenges that we face and that we are taking concrete steps to address. I am talking about the rights-based approach that was described by Richard Lyle.

We are committed to understanding the needs of our different communities. We want to eliminate discrimination, reduce inequality, protect human rights and build good relations by breaking down barriers that may hinder and prevent people from accessing the care, services and supports that they need.

Our “Strategic Framework for Action on Palliative and End of Life Care” was published in December 2015. It sets out our vision that, by 2021, everyone in Scotland will have access to high-quality palliative and end-of-life care tailored to their individual circumstances. Support that meets people at their point of need—whatever their personal situation or individual characteristics—is what each of us would want for ourselves and those about whom we care. That is why a tailored approach is essential if people are to have the benefit of high-quality palliative and end-of-life care, regardless of their age or mental health—points on that were made by Dean Lockhart and Monica Lennon—wealth or where they live.

Any response to the need that we face will require meaningful engagement with communities and Scottish society as a whole, and we will have to build on the undoubted assets and strengths that we have across our communities. It is therefore essential that we create the right conditions nationally to support communities in their planning and delivery of palliative and end-of-life care services, 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 improve palliative and end-of-life care in sustainable ways that work for the Scottish population as a whole and for the groups who are identified in the report.

We have already done much national work to facilitate and support local planning of palliative and end-of-life care services through integration of healthcare and social care, which is one of the most significant reforms since the establishment of the NHS. Integration authorities bring together NHS boards, local authorities and others to ensure delivery of efficient 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, and are based on real local understanding and flexibility.

The key to the success of that work is the power of integration authorities to drive real change. They will manage more than £8 billion of resources that NHS boards and local authorities previously managed separately. That represents more than 50 per cent of territorial health board expenditure, and more than 80 per cent of local authority social care expenditure. With a greater emphasis on community-based and more joined-up care, integration aims to improve care and support for the people who use health and social care services. That will help to equip providers of local palliative and end-of-life care better in order to meet the unique needs of each individual in their community. That compassion is evident in the services that have been described today by Donald Cameron and Elaine Smith, and innovation is shown in Dean Lockhart’s description of the fast-track discharge service.

As is set out in our “Strategic Framework for Action”, we have asked Healthcare Improvement Scotland to test and implement improvements in 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’s “living well in communities” and “focus on dementia” improvement teams to take that work forward.

Data are vital. Without data, we will not know whether people are getting the palliative and end-of-life care that they need. Bob Doris made that point well. Without data, communities cannot commission local services to meet their people’s care needs, and care plans will remain hard to share. The data challenge is recognised in our “Strategic Framework for Action”, which includes a commitment to support improvements in the collection, analysis, interpretation and dissemination of data and evidence about the needs, provision, activity, indicators and outcomes in respect of palliative and end-of-life care.

A working group is tasked with clarifying the data requirements, to ensure that they are valuable for individuals who are 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 investigating a number of areas in which data collection can be improved, including exploring avenues for improving the available data on specific groups of people, including those who were identified in Marie Curie’s report.

Difficult though it is to discuss, will that include a focus on children and young people from deprived areas who seem to form a particular group that does not access appropriate care?

I will certainly take on board Elaine Smith’s point. From my previous portfolio of childcare and the early years, I know that the issue might also be of interest to Mark McDonald, and I know that there is an awful lot of support from organisations such as Cruse Bereavement Care Scotland and others. One of the things that struck me in my time in that previous post was the support that siblings require when there is the death of a child. Oftentimes, they are the ones who are overlooked in terms of the support that is required.

There is probably a host of other areas that we need to focus our attention on—in particular, around child bereavement and death. It is difficult to talk about, but that is no excuse for shying away from the realisation that we always need to do as much as we can. The getting it right for every child approach is probably quite appropriate for that, and relevant to the point that Elaine Smith raised, as well.

In the moments that I have left, I turn to the values and skills that people need from our health and social care staff. I started by saying how hard we find it as a nation to discuss death and dying—other members also said that. However, skill in having those difficult conversations is absolutely critical for anticipatory care planning conversations because 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. That demanding and challenging staff development need is reflected in our framework, which contains a commitment to support the development of a new palliative and end-of-life-care educational framework. NHS Education for Scotland is working with the Scottish Social Services Council to develop a consistent approach to workforce learning and development, and to share practice across the country.

Lastly, I want to say a bit about palliative and end-of-life-care research, which was a big focus of Colin Smyth’s remarks. As part of the programme of work 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 over 400 relevant research studies to help us to develop a clearer picture of research and data gaps and to support improvement.

Uniquely in the devolved nations, the Scottish Government has also committed funding for a strategic collaboration with Marie Curie. That funding supports a call for research projects addressing priority areas that were identified in palliative and end-of-life care by the James Lind alliance’s priority setting partnership. Two research projects to date have been successful in obtaining funding, and they will be announced shortly. All will be helpful in realising the vision for palliative care by adding to the existing evidence base on palliative and end-of-life care.

In closing, I again welcome the opportunity to respond to the report from Marie Curie and naturally welcome Marie Curie’s support for the Government’s strategic framework. I will close with words that were read by Elaine Smith, which we can all unite behind:

“you matter until the end of your life.”

Our job now is to make that a reality.

13:42 Meeting suspended.  

14:30 On resuming—