 Gwbod gwyllwch ddwyllfa hwn o'i dweud i'u ddweud i'r ddweud o phoelwch, ond ynghylch yn ddigonwadau nifer 123957 i'r ddoton o unrhytau cerys gynhyrch o'r diwethaf o r沒事 ar gyfer y llunsion. promentol i12957 i ddweud i'u ddweud i'u ddweud i chi rhaid i'u ddybyg. o'r ddweud o'u mwyaf i ddweud o'r ddweud o'r ddweud o'u cwmwysgol, oedd yn mynd gwybodaeth i gael y cwmwyfodol. Gweithiwch i ddod i'r ddweud o'u ddweud. Rwy'n gweithio i gael ymgymru i'r dysg ystod yn byw o'r ffarnedig sy'n bwysigol. Rwy'n gweithio i'r ddweud o'r ffarnedig sy'n bwysigol i'r ddweud o'r ddweud o'r ffarnedig sy'n bwysigol i'r ddweud o'r helping on access and on Val Air to treatment carried out on behalf of the charity by the London School of Economics. I am also grateful to colleagues across the political divide who fought to make the debate right to take place. He defined us the active, holistic care of people with advanced progressive illness involving the management of pain and other symptoms and the provision of psychological, social and spiritual support. Clearly, Val Air to treatment is the benefit to many people as they approach the end of their lives Not just to those with terminal cancer, which is the condition most commonly diagnosed in those who actually receive this form of care. But many people in the UK today who would derive benefit from palliative care are either not offered it or receive it for only a very short time before they die. The common facts are stark and clearly indicate why positive action needs to be taken to support people living with a terminal illness and their families. If they are to be sure of getting the care that they need as their condition progresses. Of the 54,000 people who die in Scotland each year, it's estimated that between 35,000 and 40,000 should have some palliative care. But the LSE study for Marie Curie found that nearly 11,000 who need it are not in fact receiving it. And only one in five people with a non-cancer diagnosis are identified for palliative care. With carers across the UK claiming that seven out of every ten people with a terminal illness do not get all the care and support they need. And even a quarter of cancer patients are not receiving palliative care. Specific groups of people less likely to be considered for palliative care are those aged over 85, those who live alone, those from black, Asian and minority ethnic communities and those who live in areas of deprivation. This is simply not good enough and indicates significant inequity of provision today, a problem which will undoubtedly get worse as our population ages and less action is taken urgently to address the situation. At present a third of the patients in Scottish hospitals are in their last year of life and half of Scotland's deaths occur in hospital even though most people's preference is to die at home or in a homely setting. So we're already well short of providing the end of life care which most people seek. And given the predicted 13% increase in deaths over the next 25 years and the fact that many of us who live well into advanced old age will have multiple and complex health problems such as dementia, heart failure, chronic obstructive pulmonary disease or the complications of diabetes or long term obesity, there is a clear and urgent need for the conversation about terminal care which is being recommended by Marie Curie. We should acknowledge that people with all types of terminal disease and not just cancer can benefit from palliative care and this ideally should be planned for from the point of diagnosis of the terminal nature of the illness so that an appropriate care pathway is in place as the condition progresses and this care can be delivered within the community in a hospice or when necessary in hospital. A significant amount of work remains to be done if we achieve a gold standard of palliative care for the maximum number of patients who require it. There has to be a conversation between policy makers, health and social care professionals, service planners and communities about what sort of care and support we want to give to people with terminal illness when their needs are becoming more complex, are often not being met and are likely to grow in number. At the outset, health and social care professionals should be prepared to speak openly and honestly to patients and their families and carers about the terminal nature of their illness and help them to plan their care pathway, letting them know what services will be available to them and enabling them to make decisions which will help them as their condition progresses. Many health professionals and many families are uncomfortable about having conversations which acknowledge that death for their patient or relative is inevitable sooner rather than later. Although, depending on the condition and treatment, terminally ill people may live for days, weeks, months or even years after the diagnosis is made. We need to try to change the culture in Scotland today and encourage more open discussion about death. People seem happy enough to make a will and there is growing discussion about organ donation but there is still a barrier about acknowledging impending death. Professionals need to be given training and support to ensure that they are able to give high-quality person-focused care to people with terminal illness and better links need to be developed between generalists and specialists like cardiologists, neurologists and those who specialise in palliative care. As integrated health and social care develops, the new integrated boards should be looking to have palliative care at the heart of their strategic plans because ineffective co-ordination of care between services such as health and social care or general and out-of-hours practice and between different organisations can lead to unnecessary delays in care and support. Despite shortcomings in gaining access to it, palliative care in Scotland is recognised as being of a high standard but we do need to make more progress in achieving equitable access to good quality terminal care for all patients who require it and Marie Curie has several suggestions for government which I will quote and which they think will move things forward. Firstly, that a reference to terminal illness, dying and death should be included in its planned revision of the 2020 vision document for Scotland. Also that palliative care should be an early priority for integration as I've just described and that in the new strategic framework for action on palliative and end-of-life care due to be published later on this year there should be a clear commitment to ensure that everyone with a palliative care need has access to it by 2020. The robust data is collected to measure progress and the experience of patients and their families, that training and support is given to health and social care professionals to deliver effective care for people who are terminal ill and that a clear resource commitment is made to achieve the aims and objectives of the strategy. Presiding Officer, we live at a time when more and more people are living into healthy and active old age thanks largely to modern developments in medical techniques and pharmaceutical products but all of us are mortal and sooner or later many of us will require palliative and end-of-life care, some earlier in life following congenital or degenerative neurological or other conditions or malignancy, others much later from diseases I've already referred to. I would like to think that we can in the foreseeable future achieve a high standard of such care for everyone who needs it, whatever their personal circumstances and wherever they live in Scotland. Not only is this desirable, it should also be cost effective with enough trust estimating potential savings of £500 per person by enabling people at the end of life to be cared for at home or in the community. Presiding Officer, I look forward to the debate and to the minister's response and I hope that everyone agrees that high quality, accessible palliative care is what we would all wish to achieve and what we should be striving for. The report that has outlined the work done by Marie Curie and the research undertaken on their behalf by LSE. The report changing the conversation demonstrates very ably the need that there is in Scotland to do exactly that, to change the conversation about death and dying and how we support those who are at that stage in their lives. In previous debates recently on the issue of Marie Curie, we talked in some length about the fact that it isn't just cancer sufferers who are looked after by this charity. There are a whole range of people who do benefit but many, many more who could benefit. Nanette Millan has comprehensively covered her arguments that we need to look at the care pathways available to people from the point of diagnosis. I would like to concentrate my remarks on the carers, the people who support others through a terminal illness. Caring for someone who is at their end of their life can be physically and emotionally draining, not least because the carer knows that their loved one is never going to get better. Many people who care for someone living with a terminal disease do not see themselves as a carer and therefore do not look for or even get the support and help that they actually need. The report of Marie Curie commissioned from the LSE shows just how important carers are to people living with a terminal illness. The report highlights that people who don't have a live-in carer are less likely to report that they have sufficient help and support and also, and importantly, likely to have a worse perception of pain management and are far less likely to access community-based services. Those are serious deficiencies in the system. The LSE report also demonstrated that over 50 per cent of people die in hospital, but that the vast majority of those would rather die at home. The report suggests that having a carer was the single most important factor associated with home death, while living alone, conversely, increased the likelihood of a hospital death. It is often difficult for people to navigate their way through the various layers of professional and personal treatment and care that is involved in sometimes complex conditions. It is often up to the carer to try to navigate through that perilous journey. However, carers need support, and they are often anxious and stressed, because not only do they have to watch their loved one going through the most difficult time, but they may have given up work to look after someone. They may have had to reduce their household expenses in order to cope. They may find that they are having to pay more for bills, as looked after people very often need additional heating and additional supplies and special food, but they themselves can often be physically tired and emotionally drained because of the tasks that they have to do. Carers put their own lives in hold and often neglect their own needs because of their dedication to their role. In some cases, they will still be trying to manage that role alongside the others that they fulfil in the family setting, as mothers, as wives, as husbands, as fathers and as mothers, as well as perhaps trying to be the breadwinner if that is possible for them to continue to do. Importantly, Mary Curie does not think that this is good enough, and neither do I. Mary Curie argues that those caring for people with a terminal illness should automatically qualify for support and that that should be underpinned by legislation. They think that health boards and health professionals should ensure that carers are involved in discussions about the care of the person they are looking after. In addition, Mary Curie believes that there needs to be more support for carers and that, crucially, that should be a consistent provision across Scotland. Mary Curie is to be congratulated for many things, but this report comes at a very important time. I, for one, would very much like to thank them for identifying what needs to be done going forward, as well as for all the things that they have done for so many years. I thank them for securing a debate on this subject and giving us the opportunity to discuss this important matter in the chamber. I also congratulate Mary Curie on the production of this important document. As changing the conversation makes clear, however, because life expectancy is improving, people with a terminal illness are living with more complex needs than before. It also makes clear that people in Scotland in the last six months of life spent anywhere between 10 and 22 days in hospital. Despite the fact that most people want to be cared for in their homes at the end of their life. At a recent meeting of the cross-party group on dementia, we discussed end-of-life and palliative care. We were fortunate enough to have Richard Meade of Mary Curie and Amy Dalrymple of Alzheimer's Scotland as guest speakers to explain the work their organisations are doing around palliative care for people with dementia. In addition to this report, Mary Curie has recently produced a report on living and dying with dementia in Scotland, which sets the scene as far as Scotland is concerned. We know that almost 90,000 people in Scotland are living with dementia and this is set to double by 2031. Close to 60 per cent of people die in hospital, but, as I said earlier, the vast majority of people prefer to live at home. By way of comparison, dementia sufferers in particular, a very small number of those are receiving palliative care, whereas 75 per cent of terminal cancer patients receive palliative care. When dementia sufferers do get palliative care, it is usually only within the last few weeks of their life. As Mary Curie suggests, only 20 per cent of those who would benefit from palliative care who are dementia sufferers actually receive such assistance. Why are people with dementia, and indeed others, not getting the care they need at the end of their life? There are a variety of reasons. Location is certainly one of the factors. People in rural communities are clearly at a disadvantage, as indeed are those who live on their own. It is also clear that the NHS and voluntary providers have a limited capacity to deliver the necessary palliative care training and support to care homes. Care homes have a limited capacity to make staff available for training and to improve practice. There is also hampered by the rapid turnover of staff, which is prevalent in many care homes, which makes it harder to embed and sustain this approach. We have problems, but, in relation to dementia in particular, as a terminal illness, we have to accept that there are implications on the type of care that is provided to those with dementia. For many, they have little or no access to specialist care. If dementia is identified as a terminal diagnosis, we need to ensure that they are provided with the care and support that they need in the same way as any other terminal illness. There are also issues in identifying dementia as a cause of death on death certificates as the ultimate cause of death. Often an infection or other common illness is registered, creating a culture where dementia is not recognised as a cause of death in its own right. We must work to improve that. I think that there has been some improvement, some increase in the prevalence of dementia on death certificates. Indeed, my own personal experience, my mother died last year. She had a variety of illnesses, but the cause of death was stated to be dementia. In addition, what can we do generally to help tackle the situation? With an ageing population, it is vital that policy makers, health and social care professionals and charities work together to ensure that people with dementia in particular are receiving the appropriate care and fully supported at the end of their life. I would like to see that dementia, end of life care in dementia in particular, is a core part of the national dementia strategy. We can work towards the point where people who might benefit from palliative care do indeed get that. We also need to focus on collecting appropriate data so that there is a clear national picture of the level and quality of care being received. However, there are some positives. More generally, we now have a new palliative care, palliative and end-of-life care national advisory group set up at the end of last year. Of course, the Government has now published new guidance to support clinical and care staff who are planning and providing care during the last days of life. There are positives, but I hope that the minister will comment on them in his closing remarks. I would like to start by congratulating the net mill on securing this debate and pointing out the importance of the report by Marie Curie for the future of the health system as a whole. We have seen the numbers relating to palliative and community care and through them the underlying causes for the lack of equal and accessible care for everyone who needs it. That is why I want to confirm my support for the work of every person who is involved in making these services more accessible. I note the report's findings that tens of thousands of people are dying each year without having been given palliative care and that more than half of those who passed away at hospitals had wanted to do so. I found it disturbing that there are visible differences in the care that different groups of people receive based on their age or their ethnic or social background. It is a promising indicator towards the goal of better health that advantages in technology, medicine and care help people to live longer but more people are developing multiple long-term conditions. The rising numbers of people living with multiple and complex conditions also means that the pressure is rising for hospitals, while at the same time we know that more than 50 per cent of people want to be cared for at home towards the ends of their life. In fact, the report notes that investment in healthcare remains very much focused on acute services in a hospital environment and not on services in the community. There are unplanned hospital admissions that take up valuable bed days, while resources could be directed towards people's needs at home. Of those undesirable hospital bed days, people are losing between 10 to 22 days as they could have been spending that time with their families during the last six months of their lives. As Mary Curly rightly put it, the current situation is not fair. If we are to make palliative care more equally accessible to everyone who needs it, we have to ensure that inequalities that are to be to the detriment of people receiving care are of course eliminated. No one should be denied care because of where they live, how old they are or their ethnic background. There is an opportunity to improve the situation through the integration of health and social care, which of course will be implemented by early next year. Should resources be allocated appropriately and fairly and implementation involving all the relevant stakeholders, a lot of people will benefit through increased systemic support and care that treats each person with a terminal illness equally as important. There are other underlying problems that should also be discussed. Many people struggle, understandably so, to come to terms with their conditions, making them withdraw socially and often developing feelings of loneliness and depression. This is the last thing that we want of course for people with terminal diseases to not feel as equal members of society because of their illnesses and conditions. Tackling social isolation must be a top priority in terms of how care is provided, so we can have clear uninterrupted information and involvement of the care receiver, close family and their friends. I have spoken about my support for equal access to palliative care for everyone who needs it. I also want to point out our commitment for zero tolerance on any kind of inequality in receiving such care and our support for ensuring sufficient resources for the integration of health and social care in the community. I hope that the discussion will develop robustly and allow for a multitude of constructive opinions. I would like to finish not just by thanking the net mill but also Mary Curie for this report. Michael McMahon, after which we will move the closing speech from the minister. I join in with colleagues in congratulating the net mill for securing this evening's debate and also thanking Mary Curie for producing the change in the conversation on terminal illness report, which I think is very timely and important. During the last Edinburgh festival, I attended a number of diverse events that were all very enjoyable for a range of reasons. However, the one that affected me most was a variety show during which my emotions were pulled in all directions. It is the event that has stayed in my memory the most and will live with me for the longest time. It was an event that was effectively a showcase pulling together a few of the performers who were performing as part of what was called death on the fringe. That was a series of shows and events looking at death and dying and was essentially a festival within the festival. Some acts were serious, some were comical, but they all made you think about what it means to live well and die well. Death on the fringe was part of the on-going charity-led campaign Good Life, Good Death, Good Grief, which works to promote more openness about dying, death and bereavement. That campaign's aim is to make people aware of ways to live with death, dying and bereavement and help them feel better equipped to support each other through those difficult times. The specific event that I attended was used to promote a further event, which was held last November, when Good Life, Good Death, Good Grief campaign initiated to absent friends, which is a people's celebration of storytelling and remembrance. That provided opportunities for people from across Scotland to remember and tell stories about dead loved ones. Good Life, Good Death, Good Grief are currently finalists in the Scottish charity awards for that work and I wish them well because their campaign has certainly been one of huge significance. As Scotland must break free from the cultural shackles that prevent people from talking about end-of-life issues and death itself. Death, dying and bereavement affects all of us, yet talking about and planning for the experiences and practicalities associated with death, dying and bereavement can be very difficult. A few years ago, the cross-party group on palliative care had a presentation and discussion on the history of how we treat death in this country. It was both fascinating and concerning to discover why we as a nation have developed such a dismal, morose and cheerless attitude towards this subject. We have also seen in the cross-party group experiences from palliative care experts who have gone to Africa and seen how the attitude towards death and dying in countries contrasts so startling with the manner in which we debate the subject. We need to become more open about death, dying and bereavement because it is holding us back and it is impacting on adversely on how we deliver health services. Because GPs find it difficult to discuss death and dying with patients and because patients find it uncomfortable to discuss how they might die, we create an environment in which we curtail an understanding around terms such as palliative and hospice and direct barriers that prevent people from obtaining effective services and support. Mary Curie is therefore correct when she says that everyone living with a terminal illness should have access to high-quality care and support that meets their needs. We have to break down the barriers that prevent that from happening. To get to that point, we need to transform the conversations about terminal illness so that people can have the best possible quality of life and death regardless of their circumstances. It should not be those with the loudest voices in the sharpest elbows who get access to the services that people need, especially those from the most deprived communities. We have to make people more comfortable using words such as death, dead and dying and enable them to make choices relating to their own death and dying. Health and social care professionals and volunteers in all care settings must be made able to have discussions relating to death, dying and bereavement with patients and their families. We often hear about the importance of starting early with our young people on reading and writing and the environment and other issues, but we must also ensure that children grow up treating dying as an inevitable part of ordinary life. Pallidive care is often ignored or at best tagged on to far too many of our health strategies. We have to make it available, accessible and appropriate and central to meeting the multiple needs of each individual person requiring additional care to live well. Mary Curie's report emphasises yet again why we need to make that so, and it is very welcome for having done that. Closing speech from the minister. Minister, seven minutes all thereby. I begin by thanking Annette Millan for securing this debate. What is a sensitive but very important subject? I can also thank Mary Curie for all her work that she undertakes across the communities of Scotland. The report by Mary Curie published last month changing the conversation is very helpful. The report along with the Mary Curie Commission London School of Economics report has been referred to. Both helpfully emphasise the importance of creating the conditions where conversations about all of these pressing issues lead to action that will make clear the essential priorities for the future co-ordination, planning and delivery of high-quality pallidive and the end of care for everyone who needs this. Those are issues that must be considered for everyone, including people living with a wide range of conditions, whereas children and young people and their families are also sadly affected by conditions where cure is not possible. Our commitment in Scotland to a new strategic framework for action was made in recognition of the need for a nationally agreed set of actions that will deliver the changes that organisations such as Mary Curie and others have highlighted as being urgently required equity of access to pallidive and end-of-life care services irrespective of where you live or what clinical condition you have will be a central element of the framework. We have established a new national advisory structure, a fresh stakeholder engagement arrangements and detailed plans to support our commitment to publish a strategic framework for action towards the end of this year. The structures now in place provide more effective links with GPs, hospice chief executives, nurses, pallidive care specialists and the leadership of NHS boards, local authorities and national scrutiny and improvement organisations. We will achieve improvement by working with people encouraging participation to make sure that everyone feels that they can work together towards a common aim that will see pallidive care available to everyone at the earliest possible opportunity. The leadership changes that we have introduced regarding the integration of health and social care set in place a new framework for how services are organised during human rightly spoke of the opportunity to improve through the integration process. Of course, integrated joint boards will now be responsible for commissioning a pallidive care services in hospitals and communities, ensuring that combined resources from health and social care are targeted through strategic commissioning. We will expect the new integrated joint boards to take account of all the issues raised by organisations such as Marie Curie and ensure that their strategic commissioning plans describe how resources, skills and services will be able to demonstrate and describe how everyone who needs pallidive care gets this, no matter where they live or what condition they are living with. Of course, part of the integration process is part of the integration process. The third sector has an important role, and Rod Campbell spoke about the role of the third sector. He mentioned Alzheimer's Scotland. In particular, it is important to remind ourselves that dementia is a terminal illness. In that regard, there are around 1,500 NHS or NHS paid for dementia, continuing care or dementia specialist beds in Scotland, providing some of the most complex, intensive and challenging care for people in advanced stages of dementia. In regard to Alzheimer's Scotland, who was mentioned by Rod Campbell, Scottish Government officials recently met with Alzheimer's Scotland to ensure that the work that they are doing on a service model for dementia care at the end of life informs our strategic framework for action that I referred to earlier. In taking forward our work in relation to pallidative care of Scottish Government, I fully recognise that we need to address the taboo that exists in Scotland around discussing death and that is something that Michael McMahon spoke about in his contribution. We are supportive of good work like the Scottish Partnership for pallidative care, good life, good death, good grief, and the alliance that Mr McMahon mentioned that is being undertaken around people being able to talk about death and dealing with related issues in relation to the point that was made by Mr McMahon and others being able to feel confident about discussing death. The Scottish Government is working closely with the General Medical Council in Scotland to support doctors who often report a need for advice on having the confidence to have an open conversation with their patients around such matters. The establishment of a communication coalition is also being considered. That is in response to growing calls from key stakeholders to have a more visible strategic commitment and support more dialogue regarding care preferences when cure is not possible. We need to be bold and want to create the conditions for people to feel able to approach those issues and to move away from medicalisation of some aspects of pallidative end of life care. People know what matters most to them and need to be supported to talk to doctors, nurses and care staff about this. Talking about preferences for care and being more open when time is becoming short often leads to a much better quality of life relief that difficult conversations no longer need to be feared or avoided. We know that most people want to plan care that supports them to be at home with their families at the end of their lives. That is why anticipatory care planning is now central to health and care in Scotland. The cross-sector group has been established with representation from health, social care housing, third and independent sector and service users to help to embed anticipatory care planning at every locality and enable people to think ahead and to record their wishes. Four people need to be supported to have their care plans in place. In that regard, people being supported at home rightly highlighted the important role of carers of those with eternal illness. I should say that the Scottish Government published new guidance to support clinical care staff for planning and providing care during the last days and hours of life at the end of last year. One of the key four principles that was identified is that consideration is given to the wellbeing of relative or carers attending the person. Of course, we have the Public Care of Scotland Bill, which will ensure better and more consistent support for carers and young carers so that they can continue that caring role. In that regard, we have rightly emphasised the importance of being able to have data and information to describe progress. We are particularly interested in the voices that are used in England and our future plans. Therefore, we must include the enhancement of a national approach to measurement and monitoring. That includes a key indicator on end-of-life care as part of the requirements to measure improvements in health and wellbeing that comes under health and social care integration. Those indicators will, of course, need to be tested over time and evolve to reflect the changing needs of individuals. I will ask the Scottish Government officials to ensure that we also encourage the local use of voices survey questions to support improvement and provide data at a national level to inform future strategy and policy development. The aim is that there is a good quality and anticipated care plan in place for those who need it, and we will consider if there are any additional qualitative and quantitative measures required on which we can build and improve. In addition, the Scottish Government has been working in partnership with the NHS, COSLA and the third sector to develop a new framework to effectively listen and respond to the voice of those who use health and social care services over time as it is implemented. The stronger voice initiative will provide an increasingly robust framework in Scotland for continuing dialogue with people on what they want from health and social care services. I hope that that gives an indication, Presiding Officer, of the great importance that its Government places in relation to supporting those who are at the end of life and what is always a difficult circumstance for them and their families. Of course, we will always be very willing to consider what more we can do.