Unpaid Carers
The final item of business is a members' business debate on motion S3M-3357, in the name of Sarah Boyack, on support for unpaid carers.
Motion debated,
That the Parliament recognises the vital role played by unpaid carers across Scotland in providing essential care and support to people whose lives are seriously affected by illness or disability and the work done to support carers by the Voice of Carers Across Lothian (VOCAL) in Edinburgh and the Coalition of Carers in Scotland; notes that the estimated replacement cost for unpaid carers in Edinburgh has increased by £98.3 million to £554.5 million; is concerned that one in five carers has given up work to provide care, the same proportion suffer poor health, only 40% have had a break from their responsibilities of more than two days and 73% live in fuel poverty, and therefore considers that the contribution made by unpaid carers to the Scottish economy should be recognised by improving the sharing of best practice in the provision of support with other European countries and local authorities across the United Kingdom and by improving the quality of support available for respite care, training, support services and young carers in Scotland.
I was keen to have a debate in Parliament on carers because, over the years, I have met many carers through community groups, campaigns and, crucially, my casework. Our carers are our unsung heroes. There are about 660,000 unpaid carers in Scotland, which is nearly one in eight people, and the work that they do for us saves the taxpayer about £7.6 billion a year. Locally, in the Lothians, there are 71,000 carers and, in Edinburgh, more than 8,000 people care for 50 hours or more a week. It is estimated that, in Edinburgh alone, without the work that carers do, the cost to the public purse would be £554 million.
As I am sure all members agree, carers are important not only because of the money. Carers UK put it superbly when it stated:
"The true value of the care and support provided by carers cannot be quantified, as caring is also an expression of love, respect, duty and affection for another person. However, it is important to recognise the true scale of carers' support provided to frail, disabled and ill people."
One thing that keeps the carers I know going is the knowledge that there simply are no better alternatives for the people they care for. However, we need to acknowledge that many carers pay a price: their health can be affected; they can be isolated; and the physical hard work can take its toll. At my surgeries, I have met carers whose decision to look after somebody for a long period has affected them personally. A key worry for many of them is that they do not know who will look after the person they support if they themselves become ill. That worry can be deeply stressful.
I am told that those providing in excess of 50 hours a week of care are twice as likely to be permanently sick or disabled as non-carers. We need to think about that. Shockingly, around 40 per cent of carers have not had a break of more than two days from their caring responsibilities. I know from speaking to constituents how hard it is to get respite of any sort.
Another major pressure on carers is financial. More than 50 per cent of unpaid carers are in debt; half of them cut back on food to make ends meet; and 79 per cent struggle to pay utility bills—up from 32 per cent in 2007. That probably does not tell us anything that we did not already know about fuel poverty, but the issue is crucial.
People who are cared for often have extra costs that need to be met, and caring for someone is rarely a short-term commitment. Two thirds of carers have cared for somebody for more than 15 years. Women in particular are likely to give up their work to look after somebody. I will bet that every member in the chamber will have a friend or a family member who has had to take that tough decision. Many people put their job on hold in the hope that they can come back to it, but without reliable or flexible care services that is a difficult thing to do.
When somebody is unable to work, the issue is not just about the money; it is also about the loss of social networks and the support that people can get when they are in work.
Without proper support, many people who are carers actually become vulnerable and need support themselves. Parliament needs to debate that issue. More and more people will be living longer—people who care for people, and people who need care. There is a long-term challenge for us. We need to do what we can to make people's lives easier.
On 27 May, we had a fantastic piece of lobbying from carers across Scotland—people who wanted to lobby us for change. We know from recent work by the Social Work Inspection Agency that carers have reported a number of key issues that would make their lives easier and more bearable.
The right to respite care is of key importance. I know that, in its manifesto, the SNP supported an annual right to respite care. I would therefore be keen to hear from the minister what progress she is making on that commitment. The right to training and education on issues relating to the caring role is important, and I believe that that can be delivered on the back of progress that is already being made. There should also be a right to emotional and therapeutic counselling and to social support. Those rights will be crucial in giving people the confidence to keep going when they know that their commitment will be for a long time.
In my casework, another issue that comes up is the right to advocacy. If someone is a carer, they need support. It is one of the hardest jobs there is; it is a constant struggle. Getting their rights met, and the rights of the person they are caring for, is crucial. There is bureaucracy to deal with, including paperwork for appeals and negotiations with social workers, health services and council housing departments. Support is needed for all of that.
Far too many carers do not get the support they need because the hassle of lobbying everybody they need to lobby is simply too much. Caring for somebody is a job in itself. From my mailbag, I know that that job is not getting any easier—the situation is getting worse. In Edinburgh, many people are struggling. The hours for support for carers are being cut, and that directly affects people's quality of life. Even getting assessed can take far too long.
Does the member agree that what she has been saying gives an indication of why many carers are in the position they are in? People who have not been carers do not really realise when they start to slip into that category. They do not describe themselves as carers, and they do not recognise it when others become carers. A Government information campaign is needed.
Margo MacDonald has made a very telling point, and I hope that the minister will pick it up in her winding-up speech.
Earlier, I said that two thirds of carers had cared for somebody for 15 years or more. That is not necessarily the plan when people start out, but once they have made that commitment very few of them would want to step back from it. People do not think of themselves as unpaid carers; they just think that they are supporting a member of the family. More support and more information could be helpful.
Direct payments are a key issue. I understand that in England and Wales carers can use direct support to ensure flexibility in the support that is given to the person whom they look after. However, in Scotland many care packages put together by local authorities operate only within business hours, which prevents people from having any chance of working.
I suspect that we are all aware of cuts in social services, which is certainly a major problem for us in Edinburgh. If carers were normal workers—apparently, there are Scottish Government documents that list carer support under workforce headings—they would have maximum working hours, access to training, tea breaks, holidays, the ability to stop work when they are ill and someone to look out for their rights. However, they do not have any of that. Although we have some fantastic carers groups, such as the Voice of Carers Across Lothian, carers need more support from us. Where is the guaranteed annual entitlement to breaks from caring for those who are in greatest need, which the Scottish National Party promised by 2011?
Carers of all ages face challenges. Respite care is an issue not just for older people but for young carers, too. Young carers are often isolated at school and suffer more often from some form of stigma, which can impact on their personal development. They have mental and physical stress, and it might be tougher for them to get into further or higher education. A lot of issues have to be addressed.
It is not just about recognising the problems that carers have. We have to move from talking about carers rights to delivering them. I thank colleagues for showing their support by turning up for the debate. I ask the minister to set out what more can be done to develop a carers strategy that will make the difference that the hard-pressed carers, who I suspect we all have worked with and know from campaigning, know has to be made. I hope that we can make the difference for those hard-pressed carers and that we can give them the support that they and the people for whom they care so desperately need.
As R A Butler said:
"Politics is the language of priorities".
One is always in the position of judging particular commitments. As a carer of two parents who are both now 91, I, too, am committed in this matter. I recognise many of the feelings that Sarah Boyack mentioned. That has come with the particular job that we do.
Earlier today, I was helping to organise lobbying for boys who suffer from Duchenne muscular dystrophy, which is a tragic and wasting malady that kills most of its victims before they are out of their youth. Costs of optimal care have been put at £200,000 per patient per year. Obviously, only a fraction of cases will get anywhere near that income, but it gives one a frightening statistic for what would be the full costs of care were it to be priced into the system. As Sarah Boyack said, the contribution of unpaid carers saves the taxpayer an estimated £7.6 billion each year.
Sarah Boyack referred to statistics. Projections suggest that by 2037, there will be 1 million unpaid carers, including the parents of boys who suffer from Duchenne muscular dystrophy and people who look after disabled or elderly friends, neighbours or family members. As she said, the financial, physical and mental strain on unpaid carers is immense. I trust that the Scottish Government's "Strategy for Carers in Scotland" consultation will help to improve the situation—that it will improve the financial support and assistance.
However, it might be worth our while to consider unpaid care within its broader social context. On demographics, we in Scotland are medically, socially and economically a nation that is in need of care. It is not an optimistic outlook. I attend too many meetings that are connected with churches or political and cultural bodies and at which, at 64, I find myself to be at least the average age and sometimes the youngest person in the place. Our committed generation is an old generation—it is a grey-haired generation. Nineteenth-century national movements called themselves "Young Ireland", "Young Italy" or even—rather late in the day—"the Young Scots". The welfare economies of western Europe are ageing. Demographics suggest that, by 2037, Scotland will depend on 1 million unpaid carers. The need to involve the younger generations is obvious.
In much of Europe, young people make caring part of their education either by way of a sideways move from national military service or on a voluntary basis. For example, in Germany or Denmark, young people can spend a "social year"—or more than a year—in the community, helping in education, care for disabled people and the elderly, or on environmental conservation projects. In Scotland, such a year would straddle the period between highers and university or school and apprenticeships. I tried to sketch that out in a recent paper for the Scottish Urban Regeneration Forum. Such an approach would act mutually by relieving and supporting unpaid carers, creating social integration and providing competence and training for young people in the period between school and higher education or work. Ideally, young people could accrue some sort of education credit for their first year in higher education or apprenticeship. We could plan things in such a way that caring would become part of education. There is no question but that people who have been through such experiences are more receptive to the idea, and intelligent in making the argument, than those who are deprived of it.
The billions of pounds that such unpaid work would save could flow from our national accounts into the real Scotland, not some ad-man's fantasy of easy money and continuous enjoyment.
I thank Sarah Boyack for bringing this important motion to the chamber.
At the last meeting of the cross-party group on carers, we heard from carers in the Highlands who had made an enormous effort to ensure that everything was sorted so that they could get up at an unearthly hour and travel to our lunch-time meeting. I wish that every member of the Scottish Parliament had heard what those carers had to say. We heard about the additional problems that rural living imposes on people, including in respect of poor public transport and the long distances that people have to travel. We also heard about the difficulties that carers have in dealing with bureaucracy and the costs that they face for respite charges, heating and travel to access health and other services.
In its guidance on charging policies, the Convention of Scottish Local Authorities says that
"it is left to the local authority to decide whether a client has reliable access to other resources such as those of a partner."
The result is that carers who look after a partner or spouse can have their income taken into account during the financial assessment of the person for whom they care. Worryingly, some local authorities are now considering assessing, or are beginning to assess, the income of parent carers when considering the services that it will provide to a disabled young person aged 18 or under. That is contrary to the Executive policy that
"carers should not be adversely affected as a result of their caring role."
Much can be done to improve the lives of unpaid carers and of those for whom they care. Transport is a problem for many. It is costly, if it is available. People who cannot travel on their own are entitled to be accompanied by a companion, but only on buses, whereas the blind persons scheme permits a companion to travel also on rail and ferry journeys. Anyone who needs to be accompanied by a companion should be allowed that.
Of course, not everyone has access to public transport. Services are sometimes not suitable and in some areas do not exist. Private transport is expensive and unpaid carers rarely have big incomes because many must give up work to provide care. Demand-responsive community transport can provide much-needed services and should be included in the national concessionary travel scheme.
Respite care is in short supply. The Government is committed to providing an additional 10,000 weeks of respite care, but thanks to the concordat, the commitment is reliant on the good will of councils. To their credit, some councils are providing respite care, but others are not—or have different ideas about how the weeks should be counted.
It would cost a lot to pay carers from the public purse for the services that they provide. Through their unpaid work, they make a major contribution to the economy, which we should recognise by ensuring that the support and services they can access are as good as possible, right across the sectors.
We need to recognise carers' needs in our health service by providing decent breaks and respite care. We must also provide adequate benefits, in recognition of the additional expenses that carers face as a result of their work.
Carers are everywhere and all of us may become carers at some time in our lives, so we must ensure that carers are seen and supported and that their voices are heard. As politicians, we are responsible for ensuring that carers are supported in every way possible, and for ending the dreadful situation that leaves them living in poverty.
I thank Sarah Boyack for securing this debate and Cathy Peattie for her excellent speech. Conservative members join them in recognising the vital role that unpaid carers play across Scotland and the tremendous contribution that carers make to those for whom they care and to the wider Scottish economy. I will highlight some issues relating to carers that were made known to me just this week—which is not much different from many other weeks—at a surgery on Friday and again by three carers who are fighting the system and battling bureaucracy.
At the reception that Christopher Harvie hosted today, we heard from young men with Duchenne muscular dystrophy and from Eileen McCallum, the grandmother of two young boys with DMD. It is important to remember that often there is more than one carer in the family, for example where grandparents and siblings are involved. The postcode lottery of care is highlighted in a booklet produced by Action Duchenne. Two young boys requested that care packages be the same no matter where people stay and regardless of age. They also asked for equal hospital tests and treatment, wherever people are in Scotland. Obviously, carers' ability to cope depends very much on the care provision and support that are in place.
We heard from Eileen McCallum about the year that her daughter in Edinburgh spent dealing with form filling, social work visits, meetings and changes of staff—all to apply for assistance at home for her two sons with DMD. At the end of the process, she was awarded four hours a week. If emphasis were placed on addressing needs rather than the bureaucracy that Sarah Boyack highlighted, the situation would be much better.
This week, I met the Huntington's disease support group in Inverness. I learned of the group's existence through Hugh Henry's members' business debate on Huntington's. At the meeting, I heard about the excellent, dedicated work of carers in the Highlands. However, it is shocking that only about 6 per cent of Scotland's 660,000 known carers receive the carers allowance. It appears that there are obstacles to accessing the funds.
The 10,000 extra weeks of respite care that are due to be delivered by 2011 are welcome, but I can confirm Cathy Peattie's point that some councils, including Highland Council, have not been increasing the number of weeks of respite care that are available at the rate that is expected in the run-up to 2011. I am not saying that the target will not be met, but the expected year-on-year increases are not happening.
In 2007, new national guidance was issued to improve take-up of direct payments. However, it is not just difficult for carers to get direct payments, it is almost impossible. Councils tell carers that they have all sorts of responsibilities and it would be far better and would make their lives easier if the council continued to deal with the issue, but often carers find that they are short-changed on the level of care.
All the issues that I have highlighted are to be set against the care 21 summary guide for carers that was published in September 2005, which undoubtedly made excellent recommendations for addressing the issues that we are considering today. Four years following the publication of that guide, a briefing on unpaid carers produced by the Scottish Parliament information centre in February confirms that
"The recommendations of the Care 21 report were encouraging, but there has been no shift with regard to additional funding … to create an infrastructure to support carers … There is unclear guidance about charging for carer services."
I hope that the debate not only raises awareness of carer issues but leads to an audit or review of existing services and support for carers, as the Community Care and Health (Scotland) Act 2002 and the recommendations that have been made over the years by the Parliament are not being implemented where they should be.
I, too, thank Sarah Boyack for bringing the debate to the Parliament. This is an important debate, and I am only sorry that its timing means that the attendance is quite low. However, I am sure that, as with previous discussions, many of us feel the issue to be important.
At the Local Government and Communities Committee meeting this morning, we considered the provision of home care services by local authorities. It was clear that, despite a commitment by local authorities to a high-quality service and the dedication of many home care staff, there are huge challenges in delivering home care services. How grateful, then, we should be to the many family members and friends who, without seeking reward, provide care, including the care that we have heard about this evening.
Members have referred to the cost that we would have to pay to provide the same care. Because we do not know how many carers there are, it is difficult to assess that cost, but it is clearly substantial. Whoever they are, carers care as a matter of course. That presents one of the difficulties in identifying carers who move into caring roles and accept caring responsibilities without recognising what they are taking on. Furthermore, they tend to make few demands on the system until things reach a desperate state. We need to do something to identify carers and to offer them the support that is available.
Sarah Boyack referred to the lobbying of the Parliament a few weeks ago when carers from throughout Scotland came here to explain to us their needs. Top of their list of requirements was respite, which many members have mentioned. It is concerning that the respite that does exist is often provided in a way that is inflexible and does not meet the needs of individual families. The question whether respite is for one day a week or to cover a couple of weeks away—or even where the respite takes place—can determine whether or not it is effective.
Although respite is intended for the carer, it is also for the cared person, who needs a break sometimes, and it can bring them some benefit in their lives. We must recognise that respite has to be flexible to meet the needs of the carer and the cared for. It should be adequate, and there should not be a postcode lottery in its provision, which Mary Scanlon referred to. It strikes me that if some councils can provide flexibility, why cannot they all? That is where the Scottish Government could come in, by providing guidance on how to provide that flexibility.
I will mention the role of young carers, and I will start with my usual initial comment: I feel very guilty when we talk about young carers. They should not be caring; they should be enjoying their young lives. However, we know that there are young people who care, and they are even more difficult to identify than other carers.
In West Lothian, where my constituency is, there is a scheme in which young people help to identify young carers in schools. That has been supported by the Big Lottery Fund. However, that funding is coming to an end, and the identification of young carers is at risk if we do not provide more. That would be a great and unfortunate loss, given that we know how to identify carers and make contacts in schools. Let us not lose that.
People in West Lothian are grateful for the work of Carers of West Lothian, which identifies carers, offers them support and campaigns to raise their profile. We need such work in more places throughout Scotland. We must learn from best practice.
Parliamentarians need to support carers, and the Scottish Government needs to ensure that the resources and guidance for local authorities match needs.
I congratulate Sarah Boyack on the selection of her motion for debate. This debate follows hot on the heels of the debate in February on Margaret Mitchell's motion on behalf of the Equal Opportunities Committee, which demonstrates the importance of the subject to members. I endorse that. There will be a spotlight on carers next week too, as it will be carers week. That is all to the good.
I acknowledge the good work that is undertaken by VOCAL, the coalition of carers in Scotland and the many other organisations that support carers throughout Scotland. I was pleased to meet members of such organisations at the beginning of the march to which Sarah Boyack referred.
I want to pick up on points that members made and to reiterate important points that were made during the debate in February. We all know that carers' work greatly complements the work of health, social work and other statutory and voluntary services, and we all recognise and value the work of unpaid carers. Changing demographic projections and the increasing number of people who live in community settings and at home will result in an even greater demand for, and reliance on, unpaid care in the future. That is a huge responsibility and we all need to respond accordingly.
For unpaid carers across the board, we have put in place a broad range of measures, which are supported by £13 million of new resources in health and local government. Those measures are helping to make progress towards the provision of an additional 10,000 respite weeks, and of information and training to support people in their caring roles. As Margo MacDonald said, many carers do not identify themselves as such, so carer information strategies should help to address that. General practitioners and other providers can identify carers who present to the national health service, perhaps as a result of stress or other conditions, and will be able to help them to secure the assistance that they need.
Does the minister agree that we should perhaps go further? Every carer is entitled to a care plan of their own. When someone who has a problem is given a care plan, and a carer for that person is identified, the carer should automatically be offered a care plan too, so that their health and wellbeing can be protected.
I am more than happy to consider that suggestion as part of the development of the carers strategy.
I assure Cathy Peattie, Mary Scanlon and other members that there will be close monitoring of progress on additional respite weeks and on the NHS carer information strategies, which we sign off individually.
I assure Sarah Boyack that work on the guaranteed respite entitlement is being taken forward with carers organisations. The work raises complex issues, not the least of which is the need to avoid displacing resources from one group of carers to another. We need to be careful about that.
We have provided grant funding for work in a number of important areas that will help to inform our carers strategy, including a mapping exercise of young carers services in Scotland, and carer training pilots that focus on carers in rural areas and in black and minority ethnic communities.
Carers' views are fundamental, of course. As part of its inspection of social work services, the Social Work Inspection Agency carried out a survey of carers. Carers returned more than 2,600 questionnaires, which was a good response. The results of the carers survey in the 24 authorities that have been inspected are available and make interesting reading. There is good news, which reflects the progress that is being made. For example, 23 per cent of carers said that the help that they receive meets all their needs, and 38 per cent said that some of their needs are met. There were examples of practice throughout the country fully taking account of carers' needs. In one area, carers of family members who have dementia had the highest praise for all the staff in a dementia centre that even offers a free laundry service for clothes and bedding, which is a big help for the carers.
However, other results reflect that more needs to be done. For example, 23 per cent of carers felt that few of their needs were met, and 17 per cent said that none of their needs was being met. In my view, those figures are too high.
As I said in February, we will revise our carers strategy in partnership with the Convention of Scottish Local Authorities and carers themselves. The emphasis is very much on improving outcomes for carers. Two steering groups, with much stakeholder interest, have been established to drive that work forward. In addition, various sub-groups have been set up to consider the progress that is to be made with the personalisation agenda. I reassure Sarah Boyack that work is under way to extend the availability and scope of direct payments to carers and to the people for whom they care, which will enable their individual needs to be met in a more person-centred way. Perhaps that should have been done in the past, but we are where we are. There are sub-groups on training and development issues for the unpaid and paid workforce; on short breaks; on the role of young carers and wider voluntary sector services; and on supporting transitions for young carers. Much work is therefore in train.
On young carers, I continue to be impressed by the innovative and effective approaches that are being taken by some local authorities, dedicated carer services and the wider voluntary sector. I accept, however, that much more can be done, particularly in mainstream services. We have awarded a small grant to VOCAL to facilitate a carers reference group of 12 carers from across Scotland who have experience of different types of caring, in order to help to progress the strategy. We are consulting young carers through the successful young carers festival and through smaller groups.
I know that caring can incur financial costs, as members have said, especially if people have to give up employment or reduce their working hours. The peak age of caring is between 45 and the early 60s, so it impacts on a crucial stage in a person's life. Carers need to be supported in accessing employment or training, or so that they do not have to relinquish or reduce paid employment. The carers steering group is considering the issues.
Eligibility for carers allowance, to which members referred, and the level at which it is set, are obviously reserved matters, and the United Kingdom Government is examining the carers benefits system as part of its wider reform. Following the poverty protest march in April, which focused on financial hardship, I wrote to the Secretary of State for Work and Pensions about the carers allowance, and I specifically put across the views of the carers to whom I had spoken. My officials will shortly meet the Department for Work and Pensions to ensure that our views are further fed in.
On fuel poverty, to which members have referred, we introduced a new energy assistance package in April. As well as there being continuing support for pensioners, low-income private sector households with young children under five or a disabled child under 16 can for the first time receive help beyond basic insulation measures. That will certainly help some carers.
Sarah Boyack's motion refers to
"the sharing of best practice in the provision of support with other European countries".
I agree with that. Last month, we gave a grant to VOCAL to help with the costs of next year's Eurocare conference in Edinburgh, which will be held from 17 to 20 May.
I thank the minister for that information. We will all look forward to the conference as a good opportunity to talk about what we do in Scotland and to learn from others. What is the minister's timescale for getting the carers strategy in place? It would be good to have it in place and under way for some time before the conference starts.
Sarah Boyack must be a mind-reader, because I was just about to say that we will publish our carers strategy for Scotland early in 2010. Much of the work will obviously be done this year, but I hope that it will be ready in time for the Eurocare conference, which would be a good fit.
There is huge potential to improve the lives of carers throughout Scotland. I think that that view is shared across all the political parties. I certainly hope that members will encourage carers in their areas to ensure that they keep up to speed with what is happening and, if possible, to feed in to the carers strategy. We certainly want to hear their views, so I encourage members to play their part in helping us do that.
Meeting closed at 17:39.