Item 3 is an evidence session for our palliative care inquiry. Before we hear from the witnesses, I put on record our thanks to the staff and service users at Rachel House in Kinross and Ardgowan hospice in Greenock, who hosted visits from committee members this week. I, and the members who accompanied me yesterday, found our visit to Ardgowan hospice extremely helpful and useful, and having spoken to Rhoda Grant, who is not here today, I know that she had the same thoughts about her visit to Rachel House. We thank everyone who made possible our engagement, which has made this inquiry all the more meaningful.
I welcome our witnesses. Amy Dalrymple is head of policy at Alzheimer Scotland; Trisha Hatt is senior service development manager for Scotland at Macmillan Cancer Support; Richard Meade is head of policy and public affairs at Marie Curie; and Maria McGill is chief executive of the Children’s Hospice Association Scotland. We do not expect opening statements, and in the interests of time we will move straight to questions.
I thank the witnesses for their detailed written submissions, which were extremely useful. I will focus on a couple of points in Macmillan’s submission that introduce some of the issues. Macmillan says:
“There is a growing misperception that palliative and end of life care is a generic speciality which can be universally applied across all conditions”.
You go on to say that
“cancer creates a unique set of challenges”,
and that there is a
“Misperception that all cancer patients receive good palliative and end of life care”,
although studies have found that
“between one quarter and one third of cancer patients had not been identified as having palliative care needs.”
I think that all the submissions place legitimate emphasis on the need to extend palliative and end-of-life care to many conditions, rather than just cancer, and many of them suggest that there is a role for generalists in palliative care. I want to explore the potential for tension between those two areas—although I am sure that there is really no tension, in that they cover the totality of the issue.
We are here to support the provision of palliative care for all on the basis of need, not diagnosis. In cancer services there has been a lot of emphasis on delivering palliative and end-of-life care, but a growing number of patients with a diagnosis of cancer are living longer, as you know, and we know from talking to patients and their families that people do not always get the care that they need, particularly during the palliative and end-of-life care phase.
Macmillan has a lot of experience and would like to help to extend palliative and end-of-life care across all diagnoses. We are in a unique position, in that we have had a lot of focus on palliative and end-of-life care and our clinical nurse specialists have a lot of skills. We support the upskilling of generalist staff. There are a number of cancer patients who receive palliative and end-of-life care from generalist staff across the piece, whether that is in their home, in hospital, in a care home or wherever they need care.
Do the other witnesses want to respond? Does Richard Meade want to comment?
You raised the issue of palliative care being a generic form of care. Palliative care is one of the truest forms of person-centred care, and it is important to emphasise that it can be very different, depending on the different patients who receive it and on their families. The needs of the patient and their family should always be put at the centre of the care. The care should be holistic; it is often about not just medical interventions and pain and symptom management but emotional, spiritual and psychological support, as well as planning—what matters to the person and what they want to happen in the time that they have.
11:15
First, I thank the committee for enabling the voices of children and families to be brought to the inquiry.
Palliative care for children and young people is perhaps a little different in several ways. One relates to the range of conditions. We in children’s palliative care see more than 400 conditions but few children and young people with cancer. In fact, the latest figures that I have, which are for 2009, show that of the 450 children who died then, only 36 had cancer. We in children’s palliative care meet a different situation. That said, it is important that every child or young person who has a life-shortening condition receives the best-possible quality of care wherever they are in Scotland and whenever they need it.
Our view, which supports what Macmillan is trying to say, is that the literature on palliative care and the experience of palliative care tends to be more about cancer than other conditions. The research into dementia and palliative care is still developing—it is at a relatively early stage.
We suggest that palliative care is not generic in itself. You need the two specialisms—the condition specialism and the palliative specialism—to come together and to work together to give the person-centred care that Richard Meade described. All four of us here probably agree, but we come at the answer from different places.
I am happy with those answers.
One of the problems is that palliative care seems to mean different things to different people, even within the medical profession. Yesterday we heard from a specialist nurse in palliative care who said that when such nurses talk about palliative care to junior doctors, the junior doctors sometimes think that they are talking about end-of-life care. When we talk about people requiring palliative care, the perception in the wider community is about end-of-life care rather than the holistic care that Richard Meade talked about. Do we need to get a clear message out that palliative care is a person-centred approach to the needs of the individual, that it is not necessarily end-of-life care and that it is not just for cancer patients?
I—
Well—
It would be helpful if I was allowed to convene. I let Malcolm Chisholm get away with it earlier but you see how quickly people take advantage and call out their answers. I shall prevail. Amy Dalrymple will go first.
Thank you, convener.
For dementia care, we are looking at the development of what we call an extended palliative phase. Prognosis and identifying the end-of-life phase are difficult with dementia, particularly when somebody is dying of dementia, rather than with dementia. Someone might be dying of something else but dementia is having an impact on their experience, or they might be dying of dementia. If somebody is dying of dementia, it is hard to identify their end-of-life phase. We therefore encourage a palliative approach a lot earlier.
We need to work out how we approach the language around that when we speak to the family and the person themselves because of the conflation of palliative care with end-of-life care. That comes from the palliative care approach being developed with specific conditions in mind. We are trying to broaden it out to other conditions. We need to look at how we adapt palliative care and the conversations around it in order to enable families and people who have those conditions to be comfortable with and accept it so that they can access it and the benefits that it might bring.
I would like to pick up a couple of points. There is a comparable symptom burden in all types of terminal illness that palliative care can support. Palliative care should be introduced from the point of need, which can be very different depending on the person and their condition or conditions. It could be needed for years, months, weeks or days. That is a really important point.
Barriers have been mentioned, and we need to make sure that there is enough training and education not just for specialist palliative care practitioners but for generalists, such as GPs and district nurses, and for hospital consultants in different specialisms to ensure that they understand how to link in with palliative care when the time is right for the patient. Sometimes it is just about starting the conversation such that when someone is seriously ill, there is a point at which somebody talks to them about their condition and about what matters to them in the potentially short time that they have left, and plans for that.
It is part of a wider issue about having open and honest conversations. That is not just an issue for our health and social care professionals; it is a societal issue. We need to have more open and honest conversations about the end of life and being terminally ill, what that might involve and how we approach it.
I agree whole-heartedly with Richard Meade that this is a societal issue. Open and honest conversations are incredibly important for everyone, particularly the children and families whom I represent. For children, their condition’s timespan might extend into years, so palliative care for children is often around for years. Palliative care should be involved at the point of need. One of the barriers is that perhaps the benefits and positive impacts that palliative care can bring to a child with a life-shortening condition are not as well known as they might be to families and particularly to the professionals on whom we rely for referrals. There are a multitude of barriers, one of which is around the willingness of all of us in society to have open conversations about our wishes in terms of our place of care and place of death, and, particularly for children, about the benefits of early referral to palliative care.
I agree with what everyone is saying about the palliative care agenda—it is an issue for everyone. It is everyone’s business; it is not just the business of clinicians and social care staff. It is about the public being able to find it in themselves to understand at what stage their needs become palliative. We can use things such as holistic needs assessments, which take a person-centred approach and identify that person’s real needs, which could be housing or other things that are not key to their diagnosis. Palliative care could start very early after diagnosis. As Richard Meade said, it is different for every person.
People’s palliative care needs can change throughout their condition. They might need some quite intense support at the start, and then have a period of needing fewer services. Palliative care can come in and out. People do not have to get a certain level of palliative care throughout; it can change.
Dennis, do you want to come in?
Thank you, convener. I was waiting to be asked.
You have been asked now. Are you going to continue to waste the precious time that we have? [Laughter.]
Trisha Hatt stated that palliative care is everybody’s business; Professor Clark said that too. He also said that Scotland is providing some of the best palliative care in the world, although he recognises that there is still a lot to be done. In recognition of that—and picking up Richard Meade’s point that things change—I would like to know whose business it really is to identify when a person on that pathway requires palliative care. They could be getting care from someone else, such as social care. What is the trigger for palliative care and who identifies the need for it? What steps do we need to take to ensure that people get the care that they require when they need it?
That goes back to upskilling generalist staff so that people right across the piece have the skills to recognise when the person’s needs change.
An example of that is the improving the cancer journey service that we support through Glasgow City Council and NHS Greater Glasgow and Clyde. That service identifies the person’s needs and signposts them to, or directs them back to, a clinician—whether that is the specialist, the general practitioner or the district nurse—or social care.
The question is who the relevant person is to support the person at that time. The issue goes back to ensuring that staff across the piece are skilled in recognising what support is required, whether that is done through a conversation, through sitting down and supporting someone with a holistic needs assessment or through anticipatory care planning. All those things get taken into consideration in identifying the proper support. It is everyone’s business.
I was interested in the distinction that Dennis Robertson made between social care and palliative care. At the moment a full range of professionals is involved in delivering palliative care who do not necessarily recognise that they are doing that. There is an argument to be made that all the care that is delivered in relation to dementia is palliative because it is not curative, to use a stark definition of palliative care.
Dennis Robertson asked about the trigger for bringing in specialist palliative care services to provide care or—preferably, for us—to support the professionals who are already providing care to continue to do so. I note that that continuation of personnel is important for people with dementia and other cognitive difficulties. Palliative care needs to be brought in in a multidisciplinary way by the whole team. In an ideal world, the team works in a co-ordinated way to provide the health and social care supports for the person with dementia, with everyone interacting with one another and helping the person to have the best quality of life. When the palliative care specialism is identified as being necessary to support that delivery of care and maintain the person’s quality of life, it needs to be brought in. However, that needs to be done in a team way; it needs to involve the person, where possible; and it needs to involve those who are closest to them.
It is everyone’s business. A range of screening tools is available to help and support professionals to identify the triggers for palliative care. Again, it goes back to education and training. We need to ensure that, when we have good, useful tools, their use is supported and they are widely used. We must make sure that health and social care professionals have the training supports to use them.
Dennis Robertson asked about triggers and identification. It is really important that all health and social care professionals have an awareness of the benefits that children’s palliative care can bring. Referral to a palliative care service for a child with a life-shortening condition does not mean the end of curative treatment. It simply means that that child and family have access to a life-enriching experience and to professionals who are perhaps better able to manage symptoms, who have the time and the ability to sit down with the family and understand what matters most to them and who can work with the entire team around the child to help to make that happen. Everyone needs to have an awareness.
There are some identification tools that can be used for adults, but there are fewer in children’s palliative care. It is a newer specialism within palliative care, so we have some research to do to get those tools right.
One of the triggers involves the carers, whose needs must be identified, too. The trigger can come when it is identified that a carer who frequents one of our information and support services, for example, or the GP service is not coping, because that is when we can identify that the person for whom they are caring has other needs.
I am interested in what Amy Dalrymple said about social care naturally developing into palliative care. A lot of palliative care goes unrecognised as part of good-quality social care.
I understand that, where specialist palliative care is provided—other witnesses can give powerful examples of that—there is a perception that it kicks in at some point. However, a few of us will have personal experience with our families in which it was not a case of something kicking in but, particularly with dementia, a general deterioration over time that also comes with getting old and frail. Dementia also brings significant issues, whether in the general social care sector or a specialist unit.
The issue is how we map the good-quality palliative care that exists out there. For example, vascular dementia is a condition in which people unlearn basic things, such as being able to communicate or to swallow, eat and chew. How do we map out and support the good practice in dealing with that condition? I suspect—I draw on personal experience in saying this—that a significant number of people in the general social care residential sector have additional palliative care needs. How those needs are being provided for is a mixed bag. I am not sure that local authority and third sector organisations are able to develop a system to identify where those additional care resources are needed or to draw in other agencies to support that work.
I am aware that I am talking specifically about dementia, but how do we map out and quantify practice? I suspect that, over generations, there has been an unmet need in the residential care sector, so it is okay to admit that there is a gap there and work towards addressing it. How do we provide the evidence and then the method by which to deliver and improve the quality of care for people in those situations?
11:30
I will have to try very hard to provide a brief response, but I would be happy to have a full meeting with you on the issue if you are interested. We have been looking at the issue in a lot of detail. Towards the end of October, we will publish a full report on how we envisage such care should be provided. I will, of course, send a copy to committee members.
Dementia is underdiagnosed in residential care, which means that there are people in that setting who we do not know have the condition, which means that they will not necessarily have their needs met. As you say, there are pockets of good practice. A hospice may join up with a care home. There may be good relationships between, for example, a community hospital and a care home, and they may share their skills.
We need to bring in the health element, too. For example, you talked about people with swallowing problems. A speech and language therapist is needed to deal with that. The responsibility for that would sit not necessarily with the local authority but with the health board. We hope that the integration of health and social care, including the budgets, should lead to more co-ordinated support. It is crucial that the partnerships exist with the third and independent sectors to ensure that there is co-ordination. I pay tribute to the independent care sector for recognising that and for starting to do its bit in making links with the new health and social care partnerships.
We suggest that a dementia practice co-ordinator is required to co-ordinate all the parts of care that are needed to make sure that someone with dementia is supported in the best way. On your example of vascular dementia, we must make sure that staff in residential care homes are not asked to do a complex care support job unsupported or untrained. They need access to training and specialist support to enable them to provide the care that they are expected to provide.
Does anyone else wish to respond?
Sorry, convener, it is your job to bring in other speakers, but I wondered whether the other witnesses would agree that we have to realise that palliative care builds up gradually over time and that we must get better at quantifying it. Sometimes, we quantify matters when something major happens, such as when a diagnosis is made or when there is a significant downturn in people’s health. That is when palliative care kicks in—that is when we start to do the bean counting of palliative care, if you like.
I will come back in later, convener, but I wanted to make that general point.
It seems that you will prompt some responses from the witnesses. When you get those responses, we will see whether you want to come back in.
I agree with Bob Doris that palliative care is sometimes prompted by a significant event or a diagnosis. Because palliative care for a child can extend over a significant period, it needs to be provided from the beginning. For example, a child might have a series of short planned breaks in one of our hospices, to enable their family to continue to care in the community where they want to be. A family can be supported by a package of care and the CHAS at home team, so that they have access to specialist expertise as and when they need it. Sometimes, a series of short planned breaks over a number of years is enough for families, who describe such breaks as a lifeline that enables them to continue to cope at home. As things change, as they often do, we can come in—seamlessly, we hope—to support families with specialist support. We also support the team around the child, which is an incredibly important part of the work.
In relation to transitions and considering risks for people, all of us, including clinicians and social care staff, have a lot of experience. We can know that at some stage a person will require palliative care, so it is about identifying that need early on. We use the tools that we talked about to ensure that support is in place before we get to the crucial point, so that things do not fall through and someone has to be admitted or their choice of place of death is not adhered to. It is about having a single point of access, particularly for people in residential care homes, to the range of care and support that is out there.
I think that we all agree that there are great examples of care in social care settings, as well as in primary care settings from GPs and district nurses, and that great care can be provided without the need to refer to specialist palliative care.
The bigger issue that is being highlighted is the lack of data and information on the true picture. For example, I think that there are just short of 12,000 people on the palliative care register, but it is estimated that 40,000 people who needed palliative care die each year. Where are some of those people, and how can we get to the true number? A big part of the issue is the need to do more to identify people who have palliative care needs, whatever setting they are in. That would help us to understand where good practice is going on, where there is unmet need and what we can potentially do to meet need and improve care.
I want to go back to the triggers for referral. In Greenock yesterday we heard that people had referred themselves through word of mouth, not to access palliative care—although I suppose that it is palliative care in the broadest sense—but to access transport and support services to get chemotherapy and radiotherapy in Glasgow. Even when people were accessing a service, it was difficult to get them to confirm who had referred them.
People seek palliative care because they have knowledge of it, and we know that palliative care is more accessible when someone has cancer. There is a difficult discussion to be had about the move from curative to palliative care when people have chronic obstructive pulmonary disease or heart disease, for example. In some cases, when people move on to palliative care they think, “That’s it. They’ve done all they can for me and now I’ve been sent home”—the witnesses will have heard all of that. Some people do not want to avail themselves of palliative care because of that perception, and others do not know about palliative care. There are people who would benefit from palliative care who are not getting it. It is the committee’s job to try to pick our way through all that.
It is important to say that access to palliative care sometimes comes down to the healthcare professional that a person sees. There are examples of great care being provided by general practitioners who refer people for not just specialist but generalist care. If a GP is prepared to sit down with the person and have an open and honest conversation about what is important to them and what they might need, the person gets good care. However, that is not happening in every setting.
The convener expressed the opinion that everyone who has a cancer diagnosis gets access to palliative care. We know that the numbers are increasing. Thankfully, people are living longer due to good research and treatment, but some are living longer with difficult problems and increasing palliative care needs.
There are good models of joined-up care out there. As I explained earlier, the improving the cancer journey service is one example that has been driven forward by social care. That is about identifying people when they are diagnosed, which is when we can start to do the holistic needs assessment.
Patients say that, generally, they are well cared for. They have lots of care, but their outside needs, such as their housing, spiritual or family needs, are not always addressed. We need to look at examples of good models of care like that.
I hope that I said that someone who has cancer is more likely to get palliative care.
Yes.
We understand that and recognise that there is an unmet need even in that area. There is a challenge in extending that principle right across the board and whether that is possible.
Absolutely.
I remind the committee that the situation with children who have cancer is different in palliative care. Excuse me for reminding you.
I also want to build on the data that Richard Meade talked about. There is some good news around data in that CHAS, supported by the Scottish Government, commissioned research from the University of York, which is due to be published in November. It will tell us the number of children and young people in Scotland who have a life-shortening condition and where they are based by health board. It is a point-in-time exercise and it will be incredibly useful. The numbers that we have at the moment tell us that there are about 4,000 such children at any one time. CHAS saw 400 children last year, but we think that the research will tell us that there are many thousands. We have much work to do to make sure that every baby, child and young person can have access to the palliative care that they need when they need it.
We also need to bear in mind that there is a choice. With some families that I know of, coming to a hospice is not right for them. Our service works hard to be flexible so that we can accept the child into our care and make sure that they have access to it, but support them in their home. The family can still have respite and the child can still have outings and experiences that they might not otherwise get. That all happens outwith the hospices. We give families the choice and ensure that our services are child and family centred.
I put on the record my thanks for the excellent work that all your organisations do for real people in Scotland.
Richard Meade talked about good-quality data. I will refer to a quote in the Macmillan submission that I was concerned about at first, although I later realised why it had been put in. It says:
“A recent English study found half of all patients dying at home received no/partial pain control. This must improve.”
However, the footnote shows that that is from the
“National Survey of Bereaved People (VOICES) 2014”
and that
“this data is not collected in Scotland”.
I know that that was put in as a long bowl to get someone like me to ask why the data is not collected in Scotland. Trisha Hatt’s submission says that 10,800 people have unmet palliative care needs and Richard Meade says that the figure is 12,000. Some people say that no one knows, and some say that it is 20,000. How do we collect that data? If someone tells me that I have cancer, I expect that I will be put up on a board and told that I will be seen by so-and-so, so-and-so and so-and-so. Why is the data not being collected in Scotland? Why do we not have the exact statistics that we need to ensure that the great work that you guys are doing is carried on and that people in Scotland get the attention and care that they deserve?
11:45
I will try to unpick some of that. We do not have an accurate picture but we have best guesses and estimates, and we can use the palliative care register as an indicator. We need to see much more movement in the area of data. I know that David Clark picked up on that in his oral evidence and in his report to the committee. Identification is a big part of getting the data; we must ensure that we pick up those who have palliative needs, whether through the palliative care register or something else.
On how we might achieve that, the Scottish Government has committed to producing a strategic framework for action on palliative and end-of-life care, which will be published by the end of the year. I am confident that capturing data will be a big part of the framework, which will be very helpful.
I turn to the types of data that we need, and that brings me to Richard Lyle’s point about VOICES, or the views of informal carers—evaluation of services survey. We need to see the quantitative data because we need to understand the numbers with regard to how many people need palliative care, when they get it, the kind of interventions that they receive and the outcomes. However, we also need to understand the quality of that care, particularly when we are talking about patients’ personal outcomes in terms of what matters to them and what they want in the time that they have. We need to measure that as well, which is where VOICES is useful, because it asks bereaved carers about the care that their loved ones received, which is important information.
To be fair, Jamie Hepburn, the Scottish Government Minister for Sport, Health Improvement and Mental Health, committed in May to look at introducing VOICES work in Scotland, primarily at a local level. We fully support that and hope that the Scottish Government develops it and takes it forward. If we can get a VOICES survey in Scotland that can develop a baseline for what quality palliative care looks like, that would be as important as the quantitative data.
That shows us that, on the data, there are already numbers available. However, we all agree that we need baseline data. We have GP palliative care registers, but we need to understand why some patients are not registered on those. Is it because they are in a care home and the staff feel that they need to refer them to a specialist service to get them on a palliative care register? I agree with Richard Meade that we need to look at a number of things. Having the support of the Scottish Government is fantastic, because it will get us together in gathering the information that is out there.
It is perhaps a reassurance that we will have the data for children next month, so children and young people’s palliative care is perhaps leading the way in that respect. We are delighted to be able to do the work on that with the University of York. As David Clark said last week, the data will allow us to begin to develop and test some models based on evidence. We can assess what is the best model of care that, in the financial circumstances, can be developed across Scotland to meet the needs of those children and young people.
I support the use of VOICES in the way that was described. VOICES has been used in England for more than 10 years, and Professor Addington-Hall has done a remarkable job with that work. However, my understanding is that it is not used for under-18s. If we are going to use that work in Scotland, we should consider developing it to ensure that it captures every death.
On the data point, it is really hard to see how many people with dementia require palliative care and how many people’s dementia will impact on their experience of palliative care. However, there will be people whose very mild dementia will not impact on their experience of palliative care so much.
There are probably about 46,000 people with a diagnosis of dementia, but the trajectory of dementia is so variable that it is very hard to predict how many of them will be coming to the end of their life. However, depending on the type of dementia that they have, we would want to introduce elements of palliative care early on before end-of-life care. We have to look at where those people are, which will have an impact on how the care is delivered. At the moment, most people with dementia who are coming to the end of their life are in a care home, but increasing numbers are in their own homes and significant numbers are still in hospital. Very few people with dementia are in hospices, even compared with the general population in hospices. In general, hospices are not accessed by people with dementia. That happens to a small extent, but we are talking about only a very small number of people.
Therefore, it is extremely hard to work out how many people with dementia have unmet palliative care needs. The Scottish Government is doing some work to look at the incidence of dementia and when in people’s lives they get dementia. As older people get it, that will be nearer the end of their lives, so people will spend two or three years living with it rather than between five and nine years, which is the usual trajectory for Alzheimer’s.
I cannot give you an answer. Although a lot of work is being done, a lot more still needs to be done. We still need an up-to-date study of prevalence in Scotland. We do not have that at the moment. We use the European figures to give us the best outline that we can get, but it is difficult to pin down the figures for Scotland. The fact that dementia is underdiagnosed is one reason why it is harder to pin down those figures. We need to improve our diagnosis rates so that we can improve planning for palliative care.
I have got the excellent answers that I wanted—thank you.
I want to ask about respite care, which Maria McGill mentioned briefly in relation to CHAS. I know that Maria is very familiar with Robert Watson’s “What About Us?” campaign. In his petition to the Parliament, he makes the point that the majority of adult hospices provide palliative care but no respite. He believes that the importance of respite cannot be overestimated and that the provision of adequate and appropriate respite should be seen as an integral part of palliative care, rather than an add-on. I would be interested to hear the panel’s comments on that.
I am happy to start; I am sure that others will want to join in.
I am incredibly proud of Robert Watson’s achievements in lodging his petition and managing to get a parliamentary debate on the issue. I was very proud of Parliament the night that it was debated.
You are right that respite is incredibly important. That is certainly the case with this particular group of young people—there are around 90 young people in CHAS over the age of 18 who are likely to make the transition to adult services over the coming years. For some, the issue is about having a place to go for respite, whether that is an adult hospice or another facility. Some young people want to embrace self-directed support, which they will use to have a different form of respite.
We have been working with every adult hospice in Scotland, bearing in mind that it is necessary for the young people concerned to have a choice about where they want that respite to be. We are working with Marie Curie in Glasgow and have some focus groups coming up with young people and their families to help us and Marie Curie to understand what could be provided for young people. In addition, we are working with Leuchie House in North Berwick to test a break there. Our staff are working with Leuchie House staff and a group of young people to find out whether that is a possible model.
We are seeking to find respite for this group of young people in a variety of ways. Some of them are supported by CHAS, but the number of young people who live in our communities with life-shortening conditions is increasing. When they were diagnosed, it was thought that they were likely to die before they reached adulthood but, with medical advances, they are living much longer. In England, the number of such young people has increased from 19 per 10,000 members of the population to 35 per 10,000, so there is perhaps a significant and hidden need.
This is a good opportunity to talk about carers. I agree that respite is very important, but the role of carers in caring for people who are terminally ill and at the end of life often goes unrecognised. I know that the committee has heard from us on the issue through its work on the Carers (Scotland) Bill, but it is worth reiterating that a live-in carer is the single most important factor in whether someone can die at home, which is often what people would prefer.
Many of those carers do not get the support that they need. Often they are not identified as being carers by statutory services—whether by GPs or by social care—and often they do not identify themselves as carers; they simply see themselves as a family member, a loved one, a wife or a husband. The support that we give carers is really important in ensuring that the good care that a person is getting at home continues.
Respite care for carers is particularly important. It could be for just a few hours so that a carer can get away to get some shopping or to have a bit of personal time or it could be a bit of support overnight so that they can get some rest. As part of this inquiry, we need to look at the role that carers play to ensure that good palliative care and good care for people can continue.
We have been talking to carers as part of the development of our work that I talked about earlier, and they say that they need support in two ways. They need support to do the job of caring, which includes providing palliative care—we talk about social carers providing palliative care but informal carers are providing it as well. Carers also need support to be themselves—to have their own life and to maintain their quality of life.
We know that carer stress and the breakdown of the informal caring relationship is the single biggest factor that precipitates somebody accessing or moving to a care home. We want people to maintain being able to be at home if that is appropriate for them and as far as that is their choice. We also want moving to a care home to be seen as a positive choice, not as something that happens just because of carer stress. That means that we need to be able to support the carer as well as the person with dementia.
Our carers talk about the need for respite. Respite for somebody with dementia normally takes place in a care home rather than in a hospice. At the very end of life, somebody is likely to be in a care home anyway, so the issue is almost the other way round and is about making sure that the carer remains involved in providing care when the person is in a care home.
When somebody is at home, the carer needs respite and, as Richard Meade says, it needs to be flexible. It does not necessarily need to be for one week every six weeks; it might need to be on a Friday afternoon every week to enable the carer to go out and do things—to see their friends, play football or whatever it is that they want to do—to enable them to maintain their own resilience.
The system has an interest in ensuring that respite is provided so that carers can maintain their resilience and keep doing the caring role, as the system really relies on those carers. Therefore, respite is really important.
The other thing that carers for people with dementia often say that they would like is support to be able to do things with their partner or parent—the person they are caring for. It is not respite as such—it is not a break from the caring role—but support to be able to go on holiday or to have a day out as a family, so that needs to be considered alongside respite. It can play the same role so it is important that we think about that as well when we talk about this issue.
Often care homes provide respite, but it is important to be able to provide respite at home and to adapt to the needs of the person with dementia and the carer. It is about maintaining continuity. If somebody gets confused when they move to a different environment, they might start becoming stressed and exhibiting signs of stress behaviour. To maintain their sense of security, it is important that respite can be provided at home.
I hope that that feedback is helpful.
Respite is really important for people and we need to identify the need for it as early as possible. People are affected by cancer right across the age spectrum, so it is about being innovative in looking at ways of providing respite so that it is not just provided in hospices or care homes. It is about looking at what is out there and at what we can do with support from volunteers, through programmes such as the Macmillan helping matters programme. As Richard Meade identified, people might just need respite for a couple of hours every other day or a couple of times a week. Those are the things that parents and families tell Macmillan. They want the need for respite to be identified early on so that it does not just come at a critical point in their care journey.
12:00
To go back to the issue that Nanette Milne raised about young people, respite has a dual purpose. Often it is mums and dads who care for young people, albeit with a care package, and respite is incredibly important for them so that they can participate in life and socialise with people their own age. However, the young people themselves are often dependent on mum and dad or a care package, and if young people in their late 20s have to go to bed when the carers come in, which is sometimes at 7 or 8 o’clock, or when mum and dad can help them to bed, society is not enabling young people who have a life-shortening condition to live their life in the way that they should live it, nor in the way that, I believe, they have a right to live it.
It is incredibly important to find creative and innovative ways of providing respite that suit people. That could mean bringing together young people with the same condition, so that they can share their experiences, socialise and, my goodness, go out to the pub together. We should be able to support that. Self-directed support can do a bit of that, but some young people like to have respite together, and we need to work together to find ways to provide that.
CHAS, working alongside Volunteering Matters, has been testing using volunteers with children and families at home. We have specially trained volunteers who go into people’s homes and provide practical support, such as making beds, doing some cleaning, making a meal or taking the dog for a walk. One of the important things that they are asked to do is to help siblings with homework, to ensure that they can continue to participate in learning at school and become the wonderful, confident young people that we want and need them to be. There are different ways in which we can offer respite support.
Bob Doris would like to come in, but before that—
Convener—
You have already been in, Dennis. I am asking those who have not asked a question whether they want to come in. After that, I will return to those who have already asked a question.
As nobody else wants to come in, we will have Bob Doris and then Dennis Robertson.
Thank you convener—I know that time is against us a little.
Last week, I asked Professor Clark about the opportunities that the Carers (Scotland) Bill presents, and the issue has come up a bit today. We hope that, ultimately, a huge number of people will come into the system and will get carer assessments and young carer statements. There will eventually be guidance on how those are set out and done consistently, and on quality and training. Is there an opportunity, during the preparation of the young carer statement and the carer assessment, to find out whether the person doing the assessment or preparing the statement believes that the carer is or is likely in the near future to be providing a palliative intervention on behalf of the family member or loved one? If so, is that an opportunity to start to collect more of the data as consistently as possible and in a structured fashion?
I will sneak in a little second question here. We have mentioned the palliative care register. This is to do with my lack of knowledge, but I am not sure how people get on that register. That seems a really obvious question. Could one feed into the other?
Could we have quick responses to that, please?
As you know, in our submission on the Carers (Scotland) Bill we have asked for people who are caring for somebody with a terminal illness to have their care plans fast tracked. If that goes ahead and is part of the bill, it should, we hope, give an opportunity for whoever is filling in the plan to ask the carer what kind of care the person they are caring for needs and whether they are on the palliative care register. There is a really good opportunity there.
Another point that we have made in relation to the Carers (Scotland) Bill is that there should be a greater role for GPs in identifying carers. That is a good place to pick up someone who is in palliative care, so there is potentially some crossover. As I understand it, GPs maintain the palliative care register; they admit people on to the register. There is definitely an opportunity there.
What qualifies people to go on the register?
I think that it is the GP’s decision, based on the diagnosis, but others might correct me on that.
Initially, all patients with a cancer diagnosis went on the palliative care register, but—
So the register is limited to cancer.
No, it is not, but there is a need for more people with other diagnoses to be added to the register. People with a cancer diagnosis often have multiple comorbidities: they may die as a result not of their cancer but of other conditions.
We will make some inquiries on that.
Richard Meade makes a great point: the carer assessment would be a fantastic way to collect that information. If we get a sudden surge of people with carer assessments, we will need to be prepared to be able to support them.
If you asked a carer whether or not they were providing a palliative care service, I am not sure that they would be able to tell you. The system needs to be a bit cleverer than that. The person doing the assessment must be able to assess whether the care that is being provided is of a palliative nature or not.
The proposed carer support plan and the assessment of personal care must be joined up in order to plan which future services will be required under both.
I have a brief supplementary on Trisha Hatt’s point about comorbidities. I am a bit worried that we are moving into silos in talking about dementia, cancer and so on. A lot of people, perhaps just as a result of the ageing process, have sensory or mobility problems. They may have acquired arthritis, or they may have heart disease or be experiencing the effects of a stroke. I understand that other conditions exacerbate illness, but what becomes the principal condition for which we are offering care? Is it the heart disease, the dementia, the cancer or the stroke?
It is the person and their need. First and foremost, we need to ask what the person and their family needs in order to cope with a series of conditions that they may experience over a number of days, weeks, months or even years.
I absolutely agree. People need specialist input for their specific conditions, but we need to look holistically at the person and their extended family in order to address their needs in a comprehensive and co-ordinated way.
At Alzheimer Scotland, we are concerned when someone’s dementia impacts on their experience of or access to care. We are trying to overcome the barriers that dementia currently creates, but—as I said earlier—we are not interested only in that aspect.
There are people who die of their dementia, and there are many others who die with their dementia, with the dementia having had a significant impact on their experience. I could give you statistics on that, but time is short.
It is important that we look not only at the person but at how the different conditions impact on each other. If the primary condition is physical, such as COPD, the psychological effects of dementia will have an impact. It is very important that each condition is looked at and that we bring together the particular specialised inputs that are required for each condition so that people can access them. We need to ensure that nobody is prevented from accessing the specialist input that they require for one condition—dementia, for example—just because they have another condition.
The issue is not silos, but the need to ensure access and bring everything together, and to recognise that care is not just about dealing with one condition that someone may have.
I have a quick question on funding, following on from the aspirational talk about how we would like the world to be.
The written submission from CHAS says that the NHS boards and local authorities will jointly meet 25 per cent of its funding. In a previous meeting of the committee, we received some evidence that around 13.5 per cent of the total cost of NHS funding for CHAS is administered through NHS Tayside. In that evidence session, the health board’s interim director of finance, Lindsay Bedford, told us that there was a commitment to revisit the baseline and confirm the agreement of hospice running costs. Has that happened yet?
Thank you for providing me with the opportunity to discuss this matter. I am sure that there is a willingness on the part of NHS Tayside to meet us—a meeting was planned but, unfortunately, we had to reschedule it. We hope to meet NHS Tayside to discuss the baseline before the end of October. However, that discussion concerns the 25 per cent figure. As you will know from my submission, there is what I would call an anomaly between the funding of children’s hospice services and the funding of adult hospice services. My ambition in my early discussions with the Scottish Government is to achieve 50 per cent funding of agreed hospice costs, which I am sure that the committee will support.
We will broaden out the discussion to cover that. We tried to establish what level of support there was for the hospices but, to put it politely, the response of the health boards with regard to adult hospices was inadequate. Does anyone have a comment to make on that?
For us, the issue is not to do with hospice funding; it is about people getting charged for care. Because care tends to happen much more in the social sector, the discussion is much more about the issues around how health and social care funding join up. Those are the biggest funding issues that I suggest the committee could think about further.
Funding arrangements for adult hospices are set out in a chief executive letter, and the figure is supposed to be 50 per cent.
While my microphone is on, I should say that all the evidence suggests that investment in palliative care services can be completely offset by the savings that are made in acute services, and that you can end up in a situation in which most people can be cared for at home, which would be their choice, and the NHS is saving money.
We attempted to get information on the 50 per cent target but the information that we received was inadequate. Do you have any information on whether that target is being met?
I would have to check.
There are no further questions. I thank everyone for their attendance and for their written evidence, which will be helpful to us. We know that you will be watching us carefully in the coming weeks.
12:12 Meeting continued in private until 12:42.