Mental Health Carers
We come now to the final item of today's business, which is a members' business debate on motion S1M-1189, in the name of Mr Adam Ingram. The debate is on mental health carers and will be concluded after 30 minutes without any question being put.
Motion debated,
That the Parliament congratulates Trust: A Carers Connection on its campaigning for the rights of carers of the mentally ill in Ayrshire; recognises the specific needs of these carers; believes that the rights of carers of people with mental illness should be at least the same as those of other carers, particularly in relation to consultation over care issues concerning the patient, and acknowledges the invaluable work carried out by these carers.
Before I begin, I would like to thank a number of people in the gallery who have come along to listen to the debate: Margaret Paton of Trust: A Carers Connection; representatives from the Mental Welfare Commission; professionals; and many carers from Ayrshire. I also mention Pat Whyte of Majella, who could not make it this evening.
Not long after I was elected last year, I met Margaret Paton and became interested in her work for carers. Trust: A Carers Connection has been working with mental health carers in Ayrshire for many years and is one of the few organisations for carers of people with a mental illness. Predictably, given the lack of public support for carers of the mentally ill, it is a voluntary self-help group that depends entirely on the commitment and determination of Margaret and others to keep going.
I lodged this motion in October because I believe that the rights and needs of mental health carers are not adequately addressed. I hope that the debate will highlight both the significant differences between carers of the mentally ill and other carers, and the fact that those differences are not catered for.
Carers and caring issues have a high profile in the Scottish Parliament. We have held debates on carers and a cross-party group has been set up as a forum for debate on caring. However, everything has been directed at caring in general, and general strategies that are aimed at all carers tend inadvertently to discriminate against and neglect mental health carers. Why should that be the case?
First, the stigma attached to mental illness is an enormous barrier to overcome. It prevents some carers from seeking help, while many others remain hidden, trying to cope in isolation. Other carers do not usually share that experience. A member of Trust: A Carers Connection said:
"People who have experienced mental health problems know what it is like to suffer pain, but their families suffer the hidden pain—not being able to speak about it to anyone, no-one to listen to their problems. The Carers' group has helped me to cope with these problems, giving me support and hope for the future."
Most disabilities carry some form of stigma. However, the stigma that is attached to mental illness makes it one of the great taboos of modern life. Carers need to know where they can go for support from those who have had personal experience of caring in a mental illness situation. Otherwise, there is every possibility that they will keep their situation a secret, with isolation the result.
Secondly, carers of people with serious mental health problems often do not identify themselves as carers. A project explicitly for mental health carers would help to identify hidden carers, would assist in the identification of young carers and/or family members, and would promote the recognition of the needs of carers in mental health services.
Thirdly, carers are often the first to notice a change in the behaviour of the person for whom they care. Indeed, they may be the only person to recognise the development of a mental health problem in the first place. Those carers are not trained; they are thrown in at the deep end with little or no assistance to care for someone who has a condition about which they may know little.
Mental illness is not a consistent condition like that suffered by someone with a physical disability. Mental illness can fluctuate, with people becoming ill quickly and unpredictably. It can manifest itself in different ways, with the person becoming aggressive or withdrawn. It is intensely emotionally demanding of the carer, who may not know the best way to react to and deal with changing behaviour. At such times, it is important to know how best to respond—to be caring, calm and non-emotional—and to be supported in doing so. It is important for carers to be able to access expertise and understanding. Often, such support can be given effectively by other mental health carers as well as by professionals.
Many welcome developments have taken place in caring and mental health, but not in mental health caring. The national carers strategy is not relevant to mental health carers. The Millan committee, which is reviewing the Mental Health (Scotland) Act 1984, is mainly patient centred. I am concerned that the development of a system of nominated people, as recommended in the second draft of the Millan committee's report, may lead to difficulties for the carer if the nominated person is different from the carer, who is often the nearest relative.
It is vital to ensure that carers' rights are balanced against those of the nominated person. For example, the professional care team should inform and consult the carer as well as the nominated person—if they are different—during a compulsory assessment and before discharge from hospital or variations to a community care plan. If those rights were provided for in new legislation, that would be an important step forward in ensuring better support for the carer and a more accurate view of the patient's situation and likely support needs. In some cases, it could also make things safer for the carers.
The nub of the problem faced by carers of people with mental health problems is lack of information. In carers' experience, patient confidentiality is often used as an excuse not to share information with or explain consent to those who care for people with mental health problems. That unacceptable practice can leave the carer under-informed, marginalised and even at risk. The challenge for this Parliament is to ensure that the needs of mental health carers are properly addressed and, in particular, that carers' rights to information and to be involved in decisions that affect them and those they care for are properly recognised in law.
One in four adults will suffer from mental ill health during their lives. They will for the most part be cared for by friends and family, saving the taxpayer some £280 million a year. Service users and carers deserve our attention and a much better deal. That is long overdue.
I congratulate my fellow South of Scotland MSP, Adam Ingram, on introducing this topic for debate. He has highlighted not only the work of carers in Ayrshire—I used to live there, so I know something about that—but the whole issue of mental health, which I believe has not received as much attention from this Parliament as it deserves.
As is evidenced by the benefits system, ours is a society that has for the most part come to terms with long-term, identifiable physical injury and disability, but which finds it hard to cope with the unseen and variable conditions that people who suffer from mental health problems have to cope with. It is time for mental health to stop being the cinderella of the health service and to be given the priority and importance it deserves, not just words and documents. I accept, however, that the Executive's commitments to mental health care are sincere.
Everybody knows someone who has had or is having a mental health problem. Each of us is much more likely to end up being the carer of someone suffering from a mental health problem than from a long-term, physical illness. Only a few minutes ago, we were talking about how stigma had been overcome and awareness increased in relation to domestic abuse. The same concerted effort is needed in respect of mental health. In my view, it is a national disgrace that progress is pitifully slow and that awareness of conditions that are so prevalent in society is so poor.
It is in that environment that carers are placed at such a disadvantage. They often have no more practical information than society at large, yet they are put into the front line of care. Formal support systems are non-existent. It is only groups such as Trust: A Carers Connection or organisations such as the Manic Depression Fellowship that offer help. There is no doubt that mental health carers should have the same input into care decisions as happens with physical illness. Experiences range from having no input into treatments that they do not understand, such as electric shock treatment, to being asked to make snap decisions that they find emotionally difficult to cope with, such as whether they are happy that their partner or child should be detained in a hospital against their will.
I do not believe that many professionals in the health and support services fully understand how disconcerting it is for a carer to see someone whom they know, love and respect undergo an almost complete change of personality. Often, as Adam Ingram pointed out, that can happen more than once. For too long, carers have been on the sidelines. They must be brought into the heart of the decision-making process in the development of care plans, just as if the person being cared for had a stereotypical physical, long-term condition. Doctors, and even community psychiatric nurses, can see a patient for only a few minutes in a week or, perhaps at best, a day. Carers live with the condition 24 hours a day and need to be involved in the process and treated by agencies with the respect that they deserve.
Carers also need practical help. They want support from people who can do shopping, wash the dishes, make the beds, clean the house and wash clothes—the things that keep the day-to-day structure of a life going. From constituents who speak to me about their experiences, I understand that social services find it very difficult to provide that sort of practical help. Instead, they offer unidentified support that is not domestic in nature. It is domestic support that people require.
Let us recognise mental illness for the serious problem that it is, not just in Ayrshire but throughout Scotland. Let us give it the priority and, consequently, the resources that it deserves. Let us ensure that society is better informed. Most of all, let us respect and honour carers for the work that they do and give them the practical support that they need.
Thirteen per cent of adult Scots are carers and their care is estimated to save the taxpayer £34 billion. What we do to care for the carers is woefully inadequate. What we do to help them is also woefully inadequate.
Carers need practical, financial and emotional support. They need information and, sometimes, training. They need information about services and benefits that they should be able to access, as well as information about the condition that affects the person for whom they care and how best to treat it. In a survey, it was found that two thirds of carers had received no information or guidance on the medical needs of the person for whom they were caring. For reasons that Adam Ingram outlined, that is even more important when the person being cared for has a mental illness. How many carers have had the benefit of training in, for example, how to lift or move a patient in a way that is safe for both the lifter and the person being lifted?
Professionals have a working week and a holiday entitlement. Carers are on duty 24 hours a day, seven days a week and 52 weeks a year unless respite provision is available to them. All too often it is not, especially when people with special needs or difficulties are involved. Caring can be exhausting, depressing and isolating. The demands on someone caring for a loved one with mental illness are often particularly complex and difficult. Hurtful behaviour caused by mental illness can be deeply distressing. Adam Ingram also highlighted the hurt that results from the stigma that can be attached to mental illness.
I thank Adam Ingram for lodging this motion. It affords us an opportunity to highlight these issues and to say how valuable the work is of organisations such as the one that he mentioned, which give help and support to carers—people who badly need it.
Like the members who have already spoken, I thank Adam Ingram for lodging this motion.
I do not have a lengthy prepared text with lots of statistics and information, because I want to speak from a personal point of view. This is a subject close to my heart, as some of my close family members have over the years suffered from mental illness.
When I was a young person, I never thought of myself as a carer for someone who was suffering from a mental illness. However, in effect, that was what I was. As a young person in that situation, I was aware that sometimes members of my family were seen as different from members of the families of other kids at my school. I was aware that often, because of the responsibilities that I had, I was unable to take part in after-school activities and activities in the local community that other young people had the opportunity to be involved in. I was also aware, from a very early age, that additional responsibilities were placed on me that would not have been placed on other young people in my community.
I recognise the need for us to change attitudes and to support young carers in particular. We are now identifying an increasing number of young carers, particularly those caring for people who suffer from various forms of mental illness and, sometimes, from both mental illness and addiction problems.
I hope, when we consider this problem, that we recognise that many people care for 24 hours a day, 52 weeks of the year. Many carers would not have it any other way. They want to do the caring; they want to take on the responsibility because they want to be the ones who look after their family members. What they want from society is not to be labelled, stigmatised or excluded. They want support to be available when they need it, in the form in which they need it. I have been a professional worker in social work and the mental health sector, so I know it from that side as well.
I commend the work that is done by all the voluntary organisations and the people who are directly involved in caring. When we develop our policies for the future, I hope that we will listen to what those people have to say and, more important, that we will hear and understand what they are saying and take their views into account.
I commend the voluntary sector for the hard work it does in many sectors. Here we are, yet again: where there is a need, people get together, rise to the challenge and provide, as far it is within their capacity, a help network to deliver services that other members have ably described.
I commend Trust: A Carers Connection for the work that it does in Ayrshire. There are other organisations elsewhere in Scotland. As I understand it, there is neither a national arrangement nor an informal network. I also commend a similar organisation in Grampian, called Care Link.
It is often left to those who have experience of mental illness, or those who have been closely involved with people with mental illness, to drive this forward. There is a grassroots response from those who have such experience. They seek help from professionals and legislators to provide support mechanisms. It is much better that it comes from the grassroots than proceeds on the basis that we produce a national strategy and say, "You will do what you are told." This is a much better approach. It is unfortunate that part of the growing process derives from the fact that support is not in place.
I commend Adam Ingram for bringing this motion to the Parliament. Now that the issue has been aired, I hope that we will hear from the minister about how we will be able to support organisations such as Trust: A Carers Connection and Care Link and how we will encourage the growth of similar organisations elsewhere so that we might be able to put a national strategy and national framework in place for carers of people who are mentally ill.
I congratulate Adam Ingram on securing this debate.
I pay tribute to carers in general and specifically carers of people with mental health problems. I acknowledge the enormous contribution that they make to society. Some of them are in the gallery today; I welcome them. As we have heard, some are also in the chamber. We would like to acknowledge the forceful and moving speech made by Cathy Jamieson.
That carers' issues are being given the higher profile they deserve is a tribute to the years of campaigning carried out by organisations nationally and locally. Among those, I congratulate Margaret Paton and her colleagues in Trust: A Carers Connection on their commitment to support carers of people with mental health problems who live in Ayrshire.
Every carer faces a unique set of circumstances. Carers of people with mental health problems need to have particular skills and sensitivity. I heard what Adam Ingram said about the carers strategy being irrelevant to mental health carers. I would submit that all carers share some important needs.
I will talk briefly about the general strategy, but I accept that most of the debate will be—and ought to be—on the specific needs of those who care for people with mental health difficulties. The main themes of the strategy are information, services, legislation, standards and monitoring. It goes without saying that all have relevance in different ways to carers of people with mental health difficulties. In particular, we know that carers want more support and better information to allow them to make real choices about how they run their lives.
I will briefly remind members of the funding that has been put into the carers strategy. We have asked local authorities to spend £10 million a year on supporting carers. As the statement at the beginning of October made clear, there will be new investment to fund 22,000 extra weeks of respite care for older people. Finally, there has been the more recent announcement of £500,000 over the next three years for voluntary organisations to help with the implementation of the carers strategy. If we bear that general background in mind, I will now turn to Adam Ingram's specific points about mental health carers.
Cathy Jamieson and David Mundell echoed Adam Ingram's opening comment about the specific problem of the social stigma attached to mental illness. We all recognise that that is an issue for people with mental illness and their carers and that we must address it on a broad front through educating the population about mental health and mental illness.
Adam Ingram pointed out that carers of people with mental health problems do not identify themselves as carers. Although we accept that, it is equally an issue for other carers. Furthermore, I accept that that might be an argument among others for specific mental health projects—I note and welcome the fact that there are such projects in Ayrshire and other parts of Scotland.
I also agree with Adam Ingram's point about training and general information and support. It is clear that carers of people with mental health problems have specific needs. That said, I must make a distinction between general information and particular information about certain individuals, which is the most controversial issue he raised. Carers need information to help them understand the health needs of the person they are caring for.
Health professionals should be proactive in seeking patient consent to share information with carers. However, if a patient refuses, that is their right and professionals are obliged to respect that choice. Although that is made clear in guidance from the General Medical Council, it is also right in principle. The particular issue of schizophrenia will be dealt with in the clinical standards on schizophrenia that the Clinical Standards Board for Scotland will issue in the next few days. Debate will continue on that issue; indeed, there are other issues where there is conflict between the patient or user of the service and the carer. However, we must accept that the patient and the user of the service has to take priority. If that proves a controversial idea, no doubt we can discuss it further.
David Mundell asked us to make mental health a priority and hoped that we would have more debates on the subject. Although I am not entirely in control of the debates, I certainly welcome other members lodging motions on the matter. I should affirm that mental health is one of the Executive's top three health priorities. I must also pay tribute once again to the Health and Community Care Committee, which has done a lot of work on mental health, particularly through its inquiry on community care.
I appreciate the minister's comments and am delighted that mental health is one of the Executive's top three clinical priorities. Can the minister be sure that the issue is also a major priority at health trust level? The Mental Welfare Commission has raised concerns that its recent visits have highlighted the same problems as it highlighted five or 10 years ago. Although I appreciate the minister's commitment, can we be sure that the issue is a major priority locally as well as nationally?
That is the challenge for us all. Health policy in general is now about translating the rhetoric of good policy documents into implementation on the ground. We have developed some mechanisms—I shall refer briefly to the mental health and well-being support group—but more work remains to be done on the performance management of mental health services and the general way in which we hold health boards to account for what they do.
Issues arose in Ayrshire some time ago about how much money was spent on mental health services. Members who know more about it than I do may want to intervene. Comparative progress has been made and the Executive will look closely at the health board in Ayrshire, or anywhere else, if it thinks that mental health is not being treated as a priority—although I am not suggesting that Ayrshire Health Board is not making it a priority now.
I could not resist Malcolm Chisholm's invitation to intervene. Is he assuring Ayrshire members that all the problems about the accountability of the health board that were identified in previous debates have been resolved and that everyone in Ayrshire will get their fair shares?
I would not be so rash as to give that guarantee, nor would it be in my power to do so, but people who have seen the report of the mental health and well-being support group into mental health services in Ayrshire—of whom Adam Ingram is one—will know that we can point to increases in budgets for mental health services, both in the local authorities and the health board. Nevertheless, the support group referred to the difference between the announced intended revenue growth and what has happened. I hasten to add that it did not say that there had not been some expansion in resources, but it issued that caveat.
It is important to acknowledge that carers and service users are central to the framework for mental health services. That framework is designed to help health, social work and housing services and the voluntary sector to provide integrated and comprehensive health and social care services for people with mental health problems. The mental health and well-being support group was set up earlier this year to encourage and advance the framework's implementation agenda and its ambitions throughout Scotland. The group will offer support, advice, encouragement and examples of best practice to those who are involved on the ground. The group is an important initiative and its reports are important documents that I hope people will pay attention to in their own areas.
On the general issue of money—I have mentioned the case of Ayrshire—I can point to some extra money for mental health services. The forecast expenditure for mental health this year is up by 8 per cent in local authorities and by 3 per cent in the NHS. More significant, the mental illness specific grant—which has been frozen for some time—will rise by 5 per cent next year, to £19 million a year. A further £5 million has been announced for improvements in NHS mental health accommodation and £2 million has been announced for the mental health and well-being development fund. Ayrshire has claimed £275,000 from that fund and will submit further bids, I am sure.
There is more to providing support than simply resourcing services, important though that is. I pay tribute to all those who support people with mental health problems, many of whom work in the voluntary sector and have mental health problems themselves. We are determined to continue the work that we have started, to give mental health the priority it deserves. We may not be able to make everything perfect but, by continuing to work together, we can and will make a difference.
Meeting closed at 17:34.