Agenda item 6 is an evidence session on the Scottish Government’s strategic framework on palliative care and its response to the committee’s report on palliative care. I welcome the Cabinet Secretary for Health, Wellbeing and Sport, Shona Robison, and her officials Janice Birrell, senior policy/implementation manager, and Professor Craig White, divisional clinical lead and chair of the national advisory group for palliative and end-of-life care.
Cabinet secretary, when you previously appeared before the committee, it was remiss of me not to give you the opportunity to make opening remarks. You have that opportunity today before we move to questions.
Thank you very much for giving me the opportunity to discuss the important issue of palliative and end-of-life care. I very much welcome the committee’s report “We need to talk about palliative care”. This is an important time for palliative and end-of-life care in Scotland, as we have seen unprecedented public discussion of end-of-life issues, and we need to build on that conversation. I was struck by the comprehensive way in which the committee assembled the written evidence and was informed by the oral evidence that was presented to it. I also commend the committee for meeting service users during its visits to Rachel house and Ardgowan hospice.
I firmly believe that, as part of delivering person-centred health and social care, it is vital that we listen to and learn from people who use the services. With more adults in Scotland living with long-term conditions that involve specific palliative care needs, and with more children with life-shortening conditions living into adulthood, I fully recognise the need for robust and effective action to address the changing needs.
On 18 December, I had the privilege of launching the Scottish Government’s “Strategic Framework for Action on Palliative and End of Life Care” at the Marie Curie hospice in Edinburgh. I was deeply grateful for the opportunity to speak to patients and staff there to hear directly about their individual experiences. I also pay tribute to the hard work of all the charities, the members of the public, the representatives of the health and social care sectors and the many others who helped to develop the framework. I am extremely pleased to tell the committee that the strategic framework has received a positive response around the world, with positive recognition coming from members of the World Health Organization and the Altarum Institute in the United States.
The vision that is set out in the framework is that by 2021 everyone in Scotland will have access to good-quality palliative and end-of-life care that is tailored to their symptoms and life circumstances. We are committed to ensuring that people can access high-quality palliative and end-of-life care regardless of their age, diagnosis, socioeconomic background or where they live.
The new health and social care partnerships and the independent hospice care and voluntary sectors will in local areas across Scotland play a central role in meeting the growing and changing need that I referred to. Only by focusing on local capacity and local solutions can we deliver the best care and support for all who are at the end of life, their families and their carers.
I recognise that significant improvements have been made in the delivery of palliative and end-of-life care in recent years; the committee heard about them from Professor David Clark of the University of Glasgow, who is a world-leading authority on the subject. Scotland has a good reputation for its palliative and end-of-life care—indeed, the number of doctors and nurses who work in specialist palliative care services in Scotland has increased—but I fully understand that we can still do a great deal to improve the provision of palliative and end-of-life care. I recognise that that will not be an easy task; it will require a great deal of hard work and commitment by many individuals and organisations across health and social care, the independent hospice care sector and the voluntary sector.
The framework outlines the Scottish Government’s 10 commitments for action to support effective implementation over the next five years, and we have also committed £3.5 million to supporting national improvements and building capacity. The framework’s 10 commitments, which provide a clear direction for improvement, are designed to improve palliative and end-of-life care in ways that are sustainable and which can be applied in many settings. Training and education are a key priority that we have identified for targeted action, and we have to ensure that medical, nursing and care staff are supported to recognise when time is becoming short and when sensitive conversations with people and their loved ones can make an enormous difference.
I am happy to report that work to fulfil the commitment has begun. NHS Education for Scotland is recruiting three regional practice education co-ordinators to work across the NHS and social care services on establishing an integrated and collaborative approach to palliative and end-of-life care education provision across health and social care partnerships.
We agree with the committee’s finding that there is a need to improve the information that we have. That is why we have committed to improving the way in which information is recorded, shared and accessed across the sectors, which includes the capturing of end-of-life care preferences for where people would like to be cared for when time becomes short. It is recognised that those preferences and what it might be possible to provide might well change—that depends on an individual’s clinical condition—but we need to get better at anticipating and recording care needs and at having an open discussion with people about what matters most to them.
It is important for staff across the sectors to be supported in improving the delivery of palliative and end-of-life care and, as part of the strategic framework, we will support clinical and cost-effectiveness evaluations. I note that a review of hospice funding is also being planned as part of the implementation process.
That has been a run-through of some of the key elements of our response. I am happy to answer members’ questions.
Thank you, cabinet secretary. Nanette Milne will ask the first question.
Good morning. I was delighted with the Government’s response to the committee’s report, given the amount of work that went into it. It is good that there is mutual thinking on the issue, and I am sorry that I will not be in Parliament to see the progress that will be made. However, I know that there is a lot of work ahead.
I will pursue the conversations that are had with the people in question. From what I have heard from witnesses who have given evidence and so on at various meetings that I have attended over the past couple of years, it seems that we as a country still do not talk about death, about planning for it and about end-of-life and palliative care. I am concerned about an issue that I think Marie Curie first raised with me—that healthcare professionals find it difficult to talk to their patients about the matter. I fully understand that. When I was a young doctor, we were thrown in at the deep end without any training at all to speak to patients about the fact that they were dying. That was not easy, and I am sure that a lot of mistakes were made because we had no training in that.
It is important to change the culture on that early so that, once someone is diagnosed with a terminal condition, the plan is openly and freely discussed with healthcare professionals. Will you give more detail about what the framework will do to drive the new culture of openness in the community?
The training and the support for healthcare professionals are a key part of the framework, but the wider conversation about how we as a society deal with such issues is more challenging. As a society, we have found that conversation difficult. Perhaps it is a bit easier now than it was a decade or a couple of decades ago, but it is still very challenging.
That is why we have been looking at extending the views of informal carers for the evaluation of services—VOICES—survey so that it is Scotland-wide and at using opportunities in working with the Health and Social Care Alliance Scotland, the Scottish health council and others to really keep the conversation going in the public arena about end-of-life and palliative care, dying in general and the fact that people should be able to express their preferences and the family should be encouraged to talk about that. None of that is easy. When it comes to an individual having that conversation, the theory is one thing, but the practice is another. The support for newly qualified staff in particular is important.
Anticipatory care planning is important, as it gives a focus for the discussion. If there is an anticipatory care plan, there is something to talk about with the person and the family, and in some ways that can make things a lot easier, as there is already a focal point.
As the cabinet secretary mentioned, NHS Education for Scotland and the SSSC are making good progress. In fact, the interviews for the posts that were mentioned are taking place today.
One advantage of NHS Education for Scotland and the SSSC being involved is their existing involvement in curriculum planning and training across the professions. Since the framework was developed, organisations have started to share their local training needs analysis with NES and the SSSC. For example, just in the past week, NHS Tayside has shared with us surveys that it has done of medical and nursing staff, who were asked to rate their confidence in such issues, and that will inform the needs analysis that the three new postholders will do across the country.
In talking to stakeholders, we have heard that initiatives such as the good life, good death, good grief initiative, which the committee’s inquiry report referenced, are important in designing future approaches around the public conversation. The learning from the good life, good death, good grief initiative needs to be scaled up across the country so that we reach more people. In turn, that will mean that, when people need to have conversations, they will be less concerned by some of the barriers that have been reported.
Is it the plan for training and support to start pretty early at the undergraduate level for nurses and particularly doctors? I presume that, once they are in post, there must be on-going training or support—I do not know what it would be called. I feel that that has to be introduced early and progressed so that nurses and doctors continue to develop confidence in raising the issue with people. The issue has to be introduced early, when a decent amount of anticipatory care can be planned.
Absolutely. There is early inclusion in the curricula and particularly in the practice-based aspects of health and social care professionals’ training. As you said, the aim is to help people in the professions to realise that such conversations do not just belong where there is recognition of the end of life or deterioration. One wants to have the conversations earlier as part of the care and support planning.
11:00
It is important to talk about the subject. I thought that the chief medical officer’s annual report was very good on the challenge that we face. As a committee, we have flagged up education, training and so on, which will assist in some ways, but we are dealing with a much deeper problem in the professions—the pressure to do something even when it will make no difference. The CMO highlighted the issues around that. When it comes to palliative care and the end of life, it is important that people have the opportunity to understand the consequences of decisions about whether to take intensive treatments. The committee touched on that in the context of access to new drugs, particularly in relation to cancer and the end of life.
Members may remember that the clinician at Ardgowan hospice, who deals not only with cancer—in relation to which it seems to be easier to talk about these things if there is an inevitability about the situation and a timescale that can be applied—but with respiratory illness, said that having such a discussion with a patient who has a respiratory illness would be seen from the clinician’s point of view as abandoning that patient and sending them home. We are dealing with deep-seated issues in the culture of the national health service. Education and training are all very well, but the chief medical officer has suggested that we need to do something more. Do you agree?
The CMO’s report was very good and quite challenging in some ways, as it reflected some of the on-going debates. We are in a different place from where we were years ago, as people can now live for a long time in a palliative care situation and their needs and requirements will change over that time. That is why the anticipatory care plan is so important, because the discussion about someone’s wishes should happen not at an end-of-life point but when they are more able to have the discussion, which I hope would involve their family, about their expectations of their care pathway—it might be over quite a long period—and, at the end of that, their end-of-life choices. There should maybe be a focus on those issues and more priority given to that discussion, in addition to recognition of the importance of the right medication or intervention, which will always be clinical judgments.
Part of the debate that the chief medical officer has sparked off is about whether there is overmedicalisation of people’s care. That is sometimes about the expectations of families and patients. If people hear about a drug or something that could enhance the time that they have, it is a natural instinct for them to want to access such a treatment.
Clinicians have to have a conversation with the patient about, for example, what the expectations are, what the treatment would do, what the likely outcome would be and any side effects. There are sometimes quite dramatic side effects, which in an end-of-life situation might not always be in the person’s best interests. Those discussions are always difficult, which is why it is best to have them as early as possible in the process.
I know that the committee has previously heard evidence about the importance of considering the issue across a wide range of conditions and not only as something that relates to the end of life. The chief medical officer asked some of the clinicians and the people who work in clinical lead roles, such as me and my colleagues, to advise her on themes. We advised her on some of the issues that relate to palliative care and the committee’s inquiry report.
That advice very much informed some of the thinking about the conversation that the chief medical officer wants to have with doctors about realistic medicine and how we build on the good work that is being done to put people and families at the centre of conversations about anticipating future care needs. To go back to Nanette Milne’s point, that might raise issues about confidence and skills for doctors. Both issues are linked in the conversation that the chief medical officer initiated in her report.
That also highlights that there is now evidence that intensive care does not lead to better outcomes. The chief medical officer has cited some American studies on stage 4 cancer in which people who opted for hospice at home had better outcomes than those who opted for intensive care. We are going to have to have a debate about support for education and training that will encourage not the clinicians but the individuals concerned to make that choice. There needs to be discussion with the individual about their options and the fact that it is not just about intensive treatment. I do not know that education and training of the workforce will help to change that dynamic.
Ultimately, it will always come down to clinical judgment in discussion with the patient and their family. Sometimes people will choose a different option if they are made fully aware of the side effects and what to expect, for example. It is about having the full range of information about the options and what they will entail, and having the discussions early enough to make a proper and informed choice.
Some of the practical issues that can cause panic or a failure of pain control leading to a last-minute hospital admission at the end of life need to be overcome to make sure that, at that stage, people are still able to make their choice and that the choice to have their end-of-life care at home is supported and sustained. I am sure that the committee has, as I have, heard of cases in which that was the active choice, but because of a lack of confidence in what to expect at the end, or because of pain-control issues, for example, people have ended up in hospital when they would not have, had the pathway been delivered as it should.
Those are the things that we want to get in about, with implementation. How can we ensure that the person’s wishes are delivered, that the professionals and the patients are confident that they will be supported in their choice, and that the families are involved? I cannot stress enough that the families have to be involved in the discussion. In end-of-life situations families can, understandably, become quite upset and distressed. We have to make sure that everybody is clear about what the choices are.
We are already working closely with the living well in communities work stream; a specific strand of that work is linked to anticipatory care planning. Two new clinical appointments have been made to that work that is hosted by and based in Healthcare Improvement Scotland. Wider work is looking at emergency care and treatment planning; we are ensuring that the anticipatory care planning work is linked to and has an oversight of the wider emergency care and treatment planning. That is out for consultation. I am happy to share with the committee the hyperlink to that work. Earlier discussions will have been had with a patient, but that work aims to establish the crisis points and to ensure that emergency care and treatment plans are in place for those times. The work very much links to the wider anticipatory care planning, but takes on board what the key preferences are when times become a bit difficult.
I want to focus on the implications of a person’s earlier decisions before an emergency arises. What is the likelihood that such a discussion would take place? What would that discussion look and sound like? Is there any consistency across the board or guidelines about that, or is it simply a case of doctor knows best?
In NHS Lanarkshire, a consistent approach across the care homes setting on anticipatory care planning has been piloted over recent years. I think that all but one care home in the Lanarkshire area use the same anticipatory care plan. Data demonstrate that inappropriate hospital admissions have declined over that time. Work is on-going to fit with the local infrastructure in order to ensure that a care lead is identified and that, in discussion with families, clear plans are put in place. We are trying to spread and share such work.
In evidence, the question has come up whether death at home, or closer to home in a residential setting, is a better death than dying in hospital. We have not measured that. We know that more people are dying at home and it is said that that is better. Do we know about the quality of those deaths and the impact on individuals and their families? I do not think that we do.
I suppose that that view is based on people’s preferences being delivered. You are right about the need to look at the quality of the experience and the need to make sure that what we think is the better solution—given that we know all the challenges in busy hospital wards, including ensuring privacy and dignity, although that is delivered in most cases—is the better solution. Craig White will say a bit about the quality of people’s experiences.
As the committee will know from its other debates on spreading quality improvement and safety initiatives, we have learned through other work, including the Scottish patient safety programme, about the best ways to spread reliable care processes to make healthcare safer. We have been learning how we can use the work that Janice Birrell mentioned in regard to NHS Lanarkshire to support health and social care partnerships in implementation in their local systems. That will reduce variations in when and how the conversations take place. You are absolutely right that we want to be able to measure that. The committee’s inquiry report identified, as you know, an urgent need to measure, and to describe the quality of, care.
We have been supporting work in NHS Lothian on how to ask people about their experience of care and how to use the VOICES framework that has been mentioned to ask bereaved relatives for their reflections on the quality of care. It is important that we are, rather than waiting for a survey once every year or two years, looking at how data can be made available—again, learning from our work on safety—to teams every day and week so that they can continuously improve the quality of care.
There is variation, but as the cabinet secretary said, we want to accelerate progress on consistency in the care process so that, in keeping with the vision, by 2021, everyone, irrespective of their condition, will know when, how and with whom such conversations will take place.
We heard evidence from Dr David Carroll from NHS Grampian. He said that although having the conversation is fine, the conversation must be continued, because patients—and sometimes their families—may well change their minds about the care that they want: they may even wish to end their life.
That brings me to the HIS in-year response. You suggest that HIS is looking at the methodology for inspecting what is going on at present. Do you have a timeframe for that?
11:15
You are right to note that an anticipatory care plan is not produced once and then frozen in time. People’s needs change, which may lead them to a different conclusion about the care that they want, including end-of-life care. There must be an on-going co-ordinated conversation so that everybody is clear about the person’s wishes.
Craig White can talk about the timeframe.
I think that Dennis Robertson is referring to Healthcare Improvement Scotland’s work on improving outcomes—
Just the HIS methodology.
There are three elements of that work. The first concerns our commitment to support HIS and others in their work in meeting the commitment to improve the quality of palliative and end-of-life care.
Last week, Janice Birrell and I met representatives of HIS, Scottish Care and the Care Inspectorate, as well as the two new clinicians who have been appointed to lead in anticipatory care planning work. In terms of a timescale, the work is under way. We have asked HIS to submit a report describing how its existing work can support the commitments to palliative and end-of-life care and—importantly—how that links in with on-going work on the national care standards, and with the inspection process for strategic plans for health and social care partnerships on which HIS and the Care Inspectorate are currently working. That process is happening and we are linking it to our on-going review of the outcomes of the work and the guidance that health boards have been given on their local delivery plans. We have invited health boards to submit details of how the strategic framework will be implemented. We have tried very much to link the work with all the existing programmes of work and with the annual monitoring and governance mechanisms in boards and partnerships.
I have a quick supplementary on the difference between hospital and community palliative care, particularly in an emergency situation. The committee did not take a lot of evidence on that, but it seems that there is a different set-up in hospital, where things happen very quickly. There is a huge intervention, and then staff realise that they cannot really help somebody.
We need a different kind of palliative care to assist the families of people who were hale and hearty half an hour ago and suddenly become ill. Has any thought been given to how that happens, especially in a busy intensive treatment unit or emergency department?
Yes. Interestingly, I recently inquired into what happens in an emergency department. I visited the accident and emergency department at Ninewells hospital a few months ago and saw for myself that even in a busy A and E department there is good practice to ensure that a quiet area is provided to give people dignity and peace at the end of life.
As you can imagine, that is quite challenging, but the boards have assured me that they make such arrangements even in busy A and E departments, when it would be stressful to move the patient and their family somewhere else. Obviously one would not, ideally, want someone to have end-of-life care in A and E, but if the clinical judgment is made that it would be better not to move someone at that stage, when they are very much at the end of their life, there is good guidance on how that can be done in a dignified manner. As I said, I saw for myself how it is done at Ninewells.
One of our commitments is to provide health and social care partnerships with guidance on commissioning. As the committee may be aware, the partnerships will be responsible for commissioning palliative care in hospitals, as well as in community settings. We will make sure that some of the issues that have been mentioned by the cabinet secretary are clearly reflected in the guidance on commissioning, so that people who present at accident and emergency departments receive high-quality palliative and end-of-life care.
The work around transforming urgent care—which is led, as you know, by Sir Lewis Ritchie—is also relevant. Sir Lewis and I will meet later today to discuss the issue that has been raised and will ensure that the work can take into consideration issues such as people presenting at urgent care services, and the need to look at the most appropriate care setting.
My main question is about children. I visited Rachel house hospice as part of the committee’s inquiry. It struck me that palliative care for children is quite different from palliative care for adults; it quite often deals with children—from very small babies—with life-limiting conditions, who might not see adulthood. Would the definition of palliative care be different for them?
Looking further ahead, as care gets better and people learn more about those life-limiting conditions, I expect that some of those children will live into adulthood. There seems to be a gap in the definitions. I notice that, in your report, you talk about ages 0 to 25, but such cases can sometimes last up to the 30s. Families facing such situations depend on children’s hospice services, which give them huge support, but after that the families can feel cast out, I guess, because the adult support for life-limiting conditions is not on the same scale.
I think that there is recognition—there certainly is in our response—that the needs of children and young people can be very different from those of adults. You touched on something quite important, which is that through the development of medication, technology and new ways of supporting children and young people with life-limiting illnesses, such children and young people are now, thankfully, living much longer than was previously the case. We need to make sure that the transition from children’s services to adult services is as smooth as possible, and that the needs of children and young people are recognised as being quite distinct from those of adults. I hope that that comes through in our response.
Craig White or Janice Birrell might want to add a little bit in response to the question about definitions.
I think that there is a specific definition for children and young adults in the summary of the wider evidence. We have been working with the Children’s Hospice Association Scotland and have been at a number of meetings at which we met the transition team that has been appointed to CHAS. That team is currently testing different models of respite care for a number of young adults who are used to coming together to meet within CHAS, in order to determine how those young adults might best be supported. In recognition of the fact that one size does not fit all, different models will be tested. CHAS is doing work on provision of short breaks to give support to individuals and their families.
I will talk about definitions and transition issues. As chair of the national advisory group, when the framework was being presented, I was keen to seek assurances from experts including clinicians and the chief executive of CHAS that our framework and the evidence summary accurately reflected the issue around definitions. The medical director of CHAS confirmed that the Government’s commitment to the 0 to 25 age group is very much in keeping with its service model.
On anticipation and transition, we expect that the children who are living longer with the sort of conditions that CHAS clinicians see will also benefit from the commitments that we have made for adults as they transition from CHAS services to adult services.
I welcome the Scottish Government’s announcement that £3.5 million is being allocated to the framework. As regards the Scottish Government’s response to the committee report, under the heading, “Where is palliative care provided?” the impact of home care visits being limited to 15 minutes is a concern of numerous people and has been raised several times. The committee recommended that the Scottish Government investigate the issue. In your response, you comment:
“Local authorities allocate care on the basis of an individual’s assessed needs. It’s clear that no-one should have a 15 minute or shorter visit when it is not appropriate.”
You add that a short visit might be appropriate if a medicine is being dispensed, for example. You go on to state:
“The Scottish Government have developed a new joint inspection regime to ensure that people get the level of support, through free personal care, that they have been assessed as needing, and that the quality is no less than the people of Scotland deserve.”
You also state that you will implement inspections, which will
“include the commissioning processes by councils that determine the volume and length of visits needed to deliver safe, compassionate care services for Scotland’s older people.”
I have a sheltered housing complex behind where I stay. On occasions when I am leaving my home or coming back I see care workers visiting clients. That happens several times a day but they are different workers, and some arrive on foot and some by car. That could be organised better. What inspection regime do you intend to develop in order to get away from the constant comments that people are only getting 15-minute care visits?
That is a big area. People should get the care package that they require according to their needs—it should be needs led. As you have outlined, a lot of work has gone on to try to improve the quality and the inspection regime around all those issues, including how councils commission services.
We are moving into new territory in the world of integration. The health and social care partnerships have had their shadow year, and from 1 April they will move into full integration. That will make a big difference. For example, the joined-up nature of people working in multidisciplinary teams gives us the opportunity to get away from a situation in which someone’s living room can feel like Sauchiehall Street, with lots of different people coming in. Big improvements have already been made in that regard, but integration helps us to take that to the next level.
Through reform of primary care, integration also gives an opportunity for the right professionals to be spending the right amount of time with the patient. You can see how important that will be in an end-of-life or palliative care situation in which the person’s needs are more complex. Reform of primary care should free up general practitioners to spend more time with the more complex cases. It is about making sure that packages of care—care in its total sense—are joined up and multidisciplinary, and that communication is good so that we minimise the number of different faces that a person will see and so that there is more continuity of care. There is a big opportunity there if we get integration and the new models of primary care right.
The framework is important and implementation is critical. A lot of big changes are happening or will happen in palliative and end-of-life care. Getting the changes right could make a huge difference to the quality of care that people receive through their lives and at the end of their lives. We need to get that right.
11:30
I certainly agree, and I hope that the many aspects that have emerged in the past year or so will make a difference to people’s lives and the care that they will receive. Given that this particular work will be carried out by local authorities, are you confident that we can monitor what is happening locally?
Inspections are moving to a whole-system approach, and we are trying to reflect the work of inspectors as the service changes and becomes more integrated. Instead of looking at just one element, we want to take the approach that we take when inspecting older people’s services of looking at the whole range of services and getting a picture of all of them, not just the hospital element.
The same can be said for palliative and end-of-life care. When we inspect those services, we will have an opportunity to look at the whole system, which I think makes more sense and, indeed, is the direction of travel as far as inspection is concerned.
We have secured agreement in principle from three health and social care partnerships—Glasgow City, East Ayrshire and Western Isles—to test out how our commitments can be implemented and discussions are going on with other health and social care partnerships. Yes, inspections are important, but in order to get continuous quality improvement, we want care staff to have access to information that can influence day-to-day improvements, including the number of staff who are involved with somebody’s care, the length of time they are there for, what they do and whether the individual’s needs have been met. The teams need those data to look at as part of our approach to improvement. Inspection is part of that work, but as a result of other quality improvement work, we have found that if we allow teams to have these data as part of our commitment to improving measurement they can start to identify variations such as too many people being involved in a person’s care or people not getting all the time that they might want. That will allow action to be taken without people having to wait for an inspection further down the line; indeed, we empower the staff to improve as they go along.
Thank you.
As far as education and training are concerned, we all know that someone who is being cared for at home will see carers, home helps, social workers or whoever three times a day, every day of the week. They are the people who provide the care, while those who are being cared for might see their doctor or nurses perhaps only once a fortnight. The question is, therefore, what are we inspecting? Are we inspecting the basic principles of continuity of care?
We are inspecting quality.
Absolutely. I think that you are right, cabinet secretary; at some points, care can be too busy. That said, a perhaps more important issue from my experience is how the individual receiving personal care relates to the person who is delivering it.
There is also the issue of care workers not getting the professional support that clinicians and nurses get with regard to resilience. Carers might have been trained to lift, handle and so on but in the main they have not had the training and education to understand palliative and end-of-life care and what they are dealing with in that respect. Instead, they use their instincts and personal experience in order to provide empathy or whatever.
Care workers could also be caring for people for a long time, and that brings us to the issue of attachment, which has been recognised for nurses and clinicians. Care workers, however, get no support when the person they are caring for dies. For that workforce to be the workforce that we need it to be, it needs to be considered in the hierarchy of clinicians, nurses and whoever. After all, the people who are delivering care day in, day out are not those highly trained and highly paid people, and I hope that the strategic framework reflects the fact that those who deliver care need education, training and support.
I agree. The work on the SSSC that Craig White has mentioned should help with that, but we need to monitor the situation and ensure that that level of care is recognised. If a care worker has a wealth of experience in delivering palliative and end-of-life care, we need to look at opportunities not only to recognise that in their skill levels, but to support them.
You are right to say that people get attached to the individuals in question—after all, they might see them every day—but the question is: what support do those staff get in an end-of-life situation?
Absolutely. That issue came up in the meeting that I referred to earlier with colleagues in Healthcare Improvement Scotland, the Care Inspectorate and Scottish Care. There was an agreement last week that Scottish Care, as a representative organisation, would be involved in the work that we want to support in health and social care partnerships. That was for the reasons that you said—so that the whole range of care workers is involved and the issues around providing high-quality care that matter to them are taken account of.
To pick up on the convener’s point about outcomes, the measurement framework that we want to develop needs to link with the health and wellbeing outcomes that are part of the integration work and legislation. We also want to develop specific indicators for palliative and end-of-life care that relate to quality outcomes.
Will you monitor the continuity principle and measure how many different care workers a person has had over a week or a month?
We want the partnerships that we will support and that will test the local work to develop and test out measures. Certainly, at those meetings we will be happy to keep an eye on that work and make sure that they are doing it as part of their monitoring. We do not want to impose from the centre how or specifically what they measure. Because the need for measures has been identified by Scottish Care at the meetings, it is already on the list of things that we are looking to discuss with partnerships.
I suppose that I am pressing you to recognise that continuity of care is a priority and a principle that applies when a person is receiving end-of-life palliative care within the national health service. Why would it not be a priority and a principle that is insisted upon and measured if a person is receiving end-of-life palliative care in any other setting?
It is a fundamentally important aspect. I am sure that work on the VOICES survey that I talked about, and which Janice Birrell may also remember, covers that point too, so we would have multiple points at which to monitor continuity of care.
We can keep the committee informed of that work as it is taken forward and tested out. We will make sure that we home in on that issue in the feedback to the committee about continuity of care.
One of the models that I have seen involves sending a note—to the individual, their family or their carers—of who is going to see the person every day. It can be seen at a glance whether the same or different people are going in every day, or whether the same three people are going in daily over the period of a week. That is a model; I am not sure whether it is replicated across the country, but as an at-a-glance mechanism it is quite simple to use. If the individual does not have the capacity to understand the note, someone else can see who is coming and say whether it is who they thought it would be.
I think that that approach is possible. It could also help in the development of the workers, who could take pride in being part of a palliative care team that can go in in specific cases.
Absolutely.
There is all sorts of potential in that model, and opportunities to release potential. There are carers out there—
With a lot of experience.
—who are very good at providing care and who do it now, but whose potential might not be recognised.
I have a supplementary on that point.
I will give you a supplementary but it will test the patience of the committee.
I know what the convener is saying and I understand the responses, but surely if we are looking at care being patient-centred, the most appropriate people should go in at the appropriate time for that person’s care, because what is appropriate will change. The continuum of what is needed changes quite often. At one point a nurse with a very good specialist background might be going in, but if the person suddenly recovers, they might go back to receiving social care.
That is about making sure that the person’s needs are kept under review. If there is a requirement for more intense support—if someone’s care needs change—of course their care should change.
I think that what the convener was saying—which I agree with—is that, where basic care needs are being met, the continuity of people involved in that care is very important. Relationships are formed and people get to trust folk, and that is very important in a personal care situation, where the person is quite vulnerable. We want to make sure that, through the testing and the work that was mentioned, we hold on to continuity of care as a key aspect of care. How we measure it can be taken forward. Janice Birrell outlined one simple way of identifying whether there had been continuity. We will take that work forward and I am happy to keep the committee informed.
I will move on to a couple of other points, but I want to focus on the health and social care partnerships too, although some of the issues have been dealt with already.
I was pleased to see in the strategic framework that the first two commitments on the Scottish Government’s list of 10 commitments relate to health and social care partnerships—we have heard today about the work of Healthcare Improvement Scotland.
The recommendations refer to the provision of expertise, guidance and so on. We know that health and social care partnerships have a great many commitments to deal with, and I am sure that everything will happen in due course, but to what extent is palliative and end-of-life care on their radar at present? The Scottish Partnership for Palliative Care recommended that all health and social care partnerships should have
“an identified lead for palliative and end of life care”
and that partnerships should ensure that palliative care is included
“within strategic and operational plans”.
To what extent are you looking at those plans in terms of the attention that they give to palliative care? The plans are in place, but to what extent are the partnerships focusing on that area at the start of their existence?
You raise an important point. As you know, the partnerships are required to produce a strategic commissioning plan by 1 April that covers all their functions, including responsibility for palliative and end-of-life care in hospitals and communities.
You may remember that the legislation sets out the requirements for engagement as part of the strategic planning process so that the third sector and the independent sector—all the right people, including local communities—are able to be part of the engagement process.
We will provide guidance specifically to support the partnerships in developing the content of their strategic commissioning plans with regard to palliative and end-of-life care services. Officials—with Craig White and Janice Birrell as the key contacts—are in the process of meeting each health and social care partnership to discuss progress on palliative and end-of-life care as well as other issues.
It is early days, but we have made it very clear to partnerships that we expect to see a focus on palliative and end-of-life care in the commissioning plans. We want to see a coherent plan laid out for how the partnerships will take that work forward and how they will involve all the providers in the third and independent sectors. The partnerships can articulate and lay out what those local plans look like. Craig White has been more involved with that aspect.
Janice Birrell and I are in daily contact with the Scottish Government’s integration team, which is linking up and meeting with the partnerships. We want to maintain the high levels of awareness that have resulted from the committee’s inquiry and the publication of the framework.
As I mentioned earlier, the local delivery plan guidance that the chief operating officer of NHS Scotland issued last week encourages NHS boards to have those conversations with partnerships in their areas in order to keep palliative care a high priority and to look at how their future plans will address the issues. The chief social worker adviser, Alan Baird, and I attended a meeting with all the chief social worker officers, and I met the health spokesperson for the Society of Local Authority Chief Executives. We have been doing that work to ensure that the various stakeholders and leadership groups that will influence commissioning in the local plans are not only aware of the framework but have the opportunity to connect. They have our contact details so that we can connect them with the third sector organisations and the areas that are a bit further forward with some of this work.
11:45
In commitment 7 of the framework, the Scottish Government commits to working with stakeholders to
“Seek to ensure that future requirements of e-Health systems support the effective sharing of individual end of life/Anticipatory Care Planning conversations.”
We had some discussions on that topic with some of our witnesses. There are questions in relation to what is recorded. We had some issues around just how many different summaries there seem to be: emergency care summaries, palliative care summaries, key information summaries for anticipatory care plans, and so on. Also, who would that information be shared with? I am not really sure where e-health has got to, but to what extent will it be possible for that information to be widely shared and to have the necessary information on the record?
I will let Craig White talk about some of the details around that but, in essence, the key people will require access to information. For example, we talked earlier about the possibility that someone who planned to stay at home could end up being admitted into an acute setting. Even with the best-laid plans, sometimes these things happen. It is important that information is available to the staff within that acute setting about the needs of the person, particularly if they are in an end-of-life situation. Craig, do you want to say a little bit about where we have got to with the palliative care register and so on?
Yes. I will mention two areas that I have been involved with and then Janice Birrell can describe some of the specific conversations that we have been having with e-health colleagues about future systems.
Following the agreement to dismantle the quality and outcomes framework in relation to GPs from 1 April, we have reached an agreement with the British Medical Association and general practices that they will continue to maintain some of the disease registers that include palliative care, which are linked very much with the key information summary.
I have also asked that some of the clinicians working in community and hospital settings identify some of the issues that they encounter—not just things that work well with the key information summary but areas that need improvement, which is crucial information as we design the future e-health systems. Janice has been leading on that work in relation to e-health. Perhaps she could comment a bit more on the future commissioning of the new systems.
NHS National Services Scotland has been invited and commissioned to do a specific and rapid piece of work to make sure that, in its current state, the key information summary is being used and accessed. NSS will also look at how best practice could be spread because we know that, while in certain areas of Scotland the electronic key information summary is accessed quite frequently, it is more challenging in other areas.
Beyond that, a group has already met to start thinking through what the requirements might be around sharing the appropriate pieces of information across the health and care settings electronically. The group will consider what information about an individual and their care preferences it is appropriate to be able to access. Some of that information is captured on the anticipatory care plan and the electronic key information summary.
That piece of work has already started and colleagues in e-health are pulling together a multidisciplinary team that will include colleagues from health and social care integration to start teasing out what the requirements might be.
In the future, it might be that the key information summary is not the platform that is identified; it might be that more than one platform that is already in existence could be used. We are not yet clear about what the outcome of the exercise will be, but the work has started.
We had a discussion about the palliative care register. Is it important to get more people on the register? There seemed to be different views about that, but it was unclear to us why so many people did not seem to get on the register, particularly if they had conditions other than cancer. Is that fairly crucial in terms of what you have been talking about, or is it not as central as some people might think?
I guess that it goes back to one of the issues that we were talking about earlier: the need to have available the key elements of information that would allow conversations to take place. If key pieces of information about a person’s condition, medication, circumstances and care preference are available quickly, clinical and care staff can have the conversations that they are not able to have if it takes a long time to get the information or if it is not there at all. We have been told that, where the information is available on the register or is accessible and updateable in a secondary care setting, there is an improvement in conversations with people who are living with such conditions.
We did some work with NHS Lothian, where we found that medical staff were taking up to an hour and a half to locate information in different systems. The key information summary was not accessible, and there were information technology problems. We supported Lothian with some improvement work and it reduced that time to less than five minutes. The board subsequently reported a huge impact on the quality of care because staff could have an informed conversation with people who were on the register or whose information had been uploaded. We want to continue to support that link between e-health and point of care.
I have one last question, on funding.
Cabinet secretary, you spoke about a review of hospice funding, and the committee raised issues in its report about the funding of the children’s hospice. However, there is a more long-standing issue that relates to the contribution that NHS boards make. We found it difficult to get information about that; it may be that there is not a common way of calculating the contribution, which makes it difficult to compare boards. The impression seems to be that some boards, if not a majority, are not contributing the 50 per cent that was agreed or required many years ago. Can you comment on the current situation and say what the review might involve?
There are a few issues there. First, Craig White and Janice Birrell have had regular meetings with CHAS. I am sure that you are aware of this, but NHS Tayside commissions services from CHAS on behalf of the 14 boards in Scotland. There have been a number of joint meetings with NHS Tayside and CHAS, and we expect that the review of that agreement will be concluded by the end of the current financial year. We have had positive updates on how those discussions are going.
Secondly, on hospice funding more generally, we felt that it was important to announce the review of hospice funding as part of the implementation to address the disparity between children’s hospices and adult hospices, and to pick up on some of the wider issues such as the need to ensure that there is equity in the contributions. The review, which I would like to be concluded by the end of this year—and certainly no later—should pick up on all those issues.
We are fortunate to have a hospice quality improvement forum in which many of the chief executives of the adult independent hospices meet. Through that group, and through discussions around our commitment to support clinical and health economic evaluations, we want to address the level of funding. We learned from the committee’s work that it was very difficult to compare the position in different parts of the country because of the differences in the way in which data, including financial data, were collected.
You will know Professor David Clark from his report. My colleagues and I worked with Professor Clark on the framework. We have asked him and his team to complete a mapping exercise of specialist palliative care services across the country. That work will be available in April. We want to link that with financial data to have an accurate description of service and to evaluate models with our health economics colleagues.
Janice Birrell and I have visited several models of care. For example, I visited Strathcarron hospice, which is collecting financial data on its hospice at home service. That is part of our commitment to support health economic evaluation. We want to address some of those issues that your report highlighted.
Do you think that that debate will encourage different models? There has been discussion about the number of empty wards in hospitals and the cost to boards if that increases, which means that they may consider providing palliative care wards in some of our general hospitals.
We need to look at a range of models. There is scope for new thinking in the shift of focus to primary and community care, such as in the community hub model that we have been talking about, which brings together a range of professionals. The Clackmannanshire hub is already up and running and has some in-patient beds, some of which may well be for palliative and end-of-life care. In the north-west Highlands there is an agreement with a care home that is supported by a GP and nurses to provide palliative and end-of-life care in commissioned beds.
There are various models and it will not be a one-size-fits-all approach, because it might differ between more remote and rural areas, and more urban settings. We need a wider range of choices and, to ensure that the capacity is there, we will need more hospice at home and more community-based end-of-life palliative care beds. That is particularly the case when things happen that might not require someone to go into an acute bed but might mean that they need additional support that could be difficult to deliver in the home environment. There will need to be an expansion of those types of service and there will probably be a range of models.
I am just flagging up the issue that increased contributions from health boards do not necessarily equal increased finance for specialist palliative care provided by hospices. The debate has tended to be around that point and whether the requirement has been met to fund 50 per cent of the running costs of hospices. Even if we get a greater focus from the health service and health boards, that will not necessarily equal money going into hospices; rather it will be for funding a broader model.
The hospice movement will always have a key role to play, no matter what other services are developed—the hospice provision will always be a critical element. The point that I am making is that we will need more provision and there are models to be tested out. It will not be one size fits all and we will need greater capacity in all settings.
I saw one unusual setting, which was a mental health ward in a hospital, and hospital at home delivered the specialist palliative care element of that care package. I am not sure how the board captured that and fed it into its specialist palliative care spending under that budget heading. The care was delivered beautifully, but it was not clear how that spend was captured. That is where it gets quite complex. I think that the committee recognises that palliative care and specialist palliative care will be delivered across many settings. The difficulty is how you report those pockets and how they are funded.
12:00
I do not disagree. I have identified an anxiety within the hospice movement. We are embarking on change. One particular value of hospices is that they are very well regarded in delivering such services. As any progress is made, having an Ardgowan or St Margaret’s hospice badge—even if it is a badge of partnership—will be important for palliative care that is being delivered under different models in communities. It is also important to have those discussions with the hospices to say that they are part of the future.
Absolutely, and I would want to reassure the hospices that their role is critical. However, we need to look at how we expand services and what the options are for different models. We also need to harness some of the opportunities that are presenting themselves. If we get the new primary care model right, GPs will have more time to spend with patients who need it, perhaps in palliative, end-of-life care situations. We need to look at it in the round.
Linked to the theme of measurement, we have been talking this week about how we support the hospices to better use the data that they collect, so that they can describe the services that they provide. On enabling more people to access palliative care, we want to use the expertise in Scotland on data linkage so that, when someone is cared for by a hospice, we get the data on what care is being provided and can link that to our other information systems.
The committee will be aware of the work that was done by Marie Curie, based on English data, about the approximately 11,000 people in Scotland who might benefit from palliative care each year. For us to take that work forward in Scotland we have to have data linkage between hospices and other systems. This week, we think that we have identified a way to start—with speed and urgency—to link the data from the hospices and plug it in more effectively.
I am aware that time is moving on, but I want to return to an earlier point. Rhoda Grant was talking about young adults and the support that we give them as they move through life. Janice Birrell mentioned respite that was available for young adults with long-term or life-limiting conditions who are living longer with those conditions. I know that you are doing some pilot work with Marie Curie, CHAS and Leuchie house. Do you have any timescales for reports on those pilot projects?
The first pilot was held towards the end of last year. I have not seen any of the outputs from that evaluation. A group of young men went to Leuchie house to trial a short respite break. I was at the meeting before the break took place and I know that Leuchie house was very keen to tease out what was required and what should be in place to help support that short break.
CHAS has been doing work to link in transition teams and has done some work in Highland to see how transition might look for young adults there. The CHAS team is looking at the current cohort but also at plans for youngsters who are coming up to that age when they need to transition on. That team has been in place for only a year and has done a huge amount of work in a short space of time.
Can you keep the committee updated on that?
Yes.
On my recent visit to Leuchie house, I was very impressed by the level of care needs that the team can manage. It is a great environment and they do a lot of activities and provide a very good-quality respite opportunity, but I was struck by the high level of need that they can manage, which is not the case in many other respite places. I was very impressed.
Thank you.
I thank the cabinet secretary and her colleagues for that very interesting session.
12:04 Meeting continued in private until 12:32.Previous
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