Young Carers
The final item of business is a members' business debate on motion S1M-1959, in the name of Donald Gorrie, on young carers.
Motion debated,
That the Parliament congratulates the young carers who, at their recent conference in Linlithgow, formed a National Young Carers Forum; pays tribute to the huge contribution to family life made by young carers; welcomes the support given by some local authorities to local young carers' groups, and urges the Scottish Executive and local authorities to give a high priority to bringing together national and local staff and resources in education, social work and health to provide joined up services to ease the burden on these young people, who are often the only person holding their family together.
The genesis of the motion was the recent meeting of young carers groups in Linlithgow, at which they formed themselves into a national forum. Like other members, I have supported local young carers groups, which perform a valuable service. The meeting was the second time that such groups had come together and the first time that they had agreed to form a national organisation. The Parliament should encourage the Executive to give practical support to that organisation.
The young people obviously benefited a lot from sharing experiences and discussing their problems and opportunities, as well as just having a good time, but they were extremely critical of most teachers and social workers with whom they came into contact. They said that the teachers and social workers were often ignorant of the commitments that the young people had and did not bother to find out why the youngsters were missing school a lot or falling behind with their work. They said that social workers varied, but quite a lot of them were unhelpful to those young people's cause. We have to address many issues.
Local carers groups are very important in that they allow the young people to share experiences and to socialise, so that they have a combination of a good time and learning how to deal with the various problems that they confront.
Undoubtedly, many young people carry a huge burden. They sustain family units. They perhaps have elderly or disabled family members and they are the only people who are capable of looking after them. They perhaps have a single parent who has a problem with alcohol or drugs and has to be sorted out and perhaps the younger children need to be looked after. Some of those quite young children carry an enormous burden. I found their stoicism and acceptance of the tasks that are placed on them extremely humbling.
Some councils have started to give good support to the young carers groups. In particular, West Lothian Council seems to have given distinct support. It enabled the national gathering to take place and provides continuing staff and financial support to build up young carers organisations. However, other councils have not yet started on that path. We have to encourage them to do so.
Carers—especially young carers—experience difficulty because dealing with them requires the joined-up government that we all talk about and do not have. Teachers, social workers and general practitioners have to co-operate, first to identify young carers and then to do something about them. Identifying them is a huge problem.
This is one of those iceberg-type things: a great many young carers do not figure in the statistics at all. Nobody really knows about them, partly because the young carers do not know how to approach the system and partly because they are afraid to approach it; young carers fear that social workers will break up the family and send people off to residential homes and so on. We have to get over that innate fear in families with problems and the feeling that the local social work department is some sort of malign force.
We have to provide support for young carers in school. The number of carers who are bullied is remarkable. It is perhaps because they miss out on school and their minds are elsewhere that they are more prone to being bullied than other people. The whole issue of helping those young people to cope with the benefits system, which is baffling to adults and much more baffling to children, and of helping them to help themselves is serious. The Parliament is very suited to getting something done about that.
I hope that the minister will accept some national responsibility for the very small sum of money that would help the new national forum develop, that he will encourage councils to support carers groups and that we will develop a system of co-operation between departments and between national and local government and voluntary organisations. That will help young carers, who are shouldering huge burdens on our behalf. If young carers were removed, many families would collapse. They perform a very important function for society. I think that we should applaud their actions and do what we can to support them. I look forward to the minister's contribution along those lines.
I congratulate Donald Gorrie on securing the debate. In national carers week, it is right that the Parliament recognises a group of carers who give their time and energy and often receive very little support in return.
When I became an MSP, I received a briefing from Sutherland Young Carers Project, which believed that there were more than 70 young carers in Sutherland alone. That is a significant number given the population of the area. I was also amazed at how that group had been able to identify those carers in a remote, rural community. I agree with Donald Gorrie that, as a priority, we must consider ways of identifying young people who are performing the role of carer.
The Sutherland, Skye and Lochalsh young carers organisation, for example, has worked closely with schools to identify those involved in caring for a close relative. That includes going to the school and speaking to the pupils. We need to involve other agencies and general practitioners to ensure that the young carers are all identified. In the study that was carried out in Sutherland, one of the young carers was five years old. It is difficult to envisage how children so young could be identified as carers without all the agencies working together.
Once carers have been identified, it is essential to give them the support that they need. There are a number of groups in the Highlands and Islands that are trying to doing that. I am impressed with the vision that such groups have shown in bringing support to young people.
The distance that many young carers live from one another can hamper efforts to provide support and can reduce their social contact with people who are in a similar situation. One of the ideas that is being put into practice is to encourage more access to e-mail and the internet, which allow young people to contact fellow young carers on a regular basis. That opportunity has been taken up by many young people in the area. Schools have allowed young carers time off to meet carers in other areas, which is a very good thing, because it is not always possible for them to meet people who are in a similar situation. That social contact is very important.
I am pleased that in its consultation proposals on new laws to help carers the Government has highlighted proposals for young carers. The report of the Scottish carers legislation working group addressed whether young carers should have statutory rights to assessment. The Executive has pointed out that a statutory right could cause difficulties if parents did not believe that an assessment was warranted. However, I have discussed the issue with carers groups, which generally favour the right to an assessment. They acknowledge that cases must be handled sensitively and that an assessment of the whole family's needs may be required. If the whole family were assessed and additional care were put in place, that would take the pressure off the young carer and remove the care burden from them.
It is essential that young people should be able to reach out for help without the threat of a family break-up. They need to know that their family can be supported and can remain as a unit.
There are also less obvious ways in which young carers can be supported. Ensuring that carers in remote rural communities have proper access to services and transport is a key issue. I encourage the Scottish Executive to address that issue across departments and other interests. I am sure that the Executive will act on the views that it receives in the consultation and will ensure that all carers groups feel that they have an input.
It is important that in the consultation the Executive targets young carers, who often do not realise that they are carers. They have no preparation, no training and no example to follow. Their lives are turned upside down. In rural areas social isolation is compounded by physical isolation. The least that we can do is listen to their views about what they need and endeavour to produce a real change for them.
I hope that the Parliament and the Executive will keep this issue high on the agenda and work together to help an important sector of our community.
I, too, congratulate Donald Gorrie on bringing this important issue to the fore once again.
Many young carers are carers not through choice, but because the burden lands on them. They care for a parent or a sibling unselfishly, against a background of missed school, lost education and poorer job prospects. They are also likely to be socially isolated: they cannot readily join clubs or go away on trips because of the need to remain at home to provide care. Their whole childhood is affected and their health may be at risk. I was shocked to discover the significant finding that children from families in which a parent suffers from mental illness are themselves at risk of developing mental health problems.
The social and educational needs of young people with caring responsibilities have been neglected. Children who are carers have rights—rights as children. For example, they have the right to education and the right to be able to go out to play.
As Donald Gorrie said, there is a problem identifying young carers. That is why I welcome the census question on carers. I hope that it will allow us for the first time properly to quantify the number of young carers in Scotland.
Caring can often go on for years, and young carers can encounter problems when they move into adulthood. They may have difficulty finding work or a home of their own, or in establishing relationships. There are parallels between the problems that they face and the problems faced by looked-after children.
Some time ago, I attended a briefing session for MSPs presented by young carers from across Scotland, who spoke about their experiences with great directness and often with a great deal of humour. Everyone who attended that briefing was touched by the stories that the young carers had to tell. It is important that young carers have a voice, because only by listening to them can we provide the support structures that they need.
There is no doubt that greater assistance for young carers could be provided through more coherent, integrated services for young people. Health, social work, education and other services must work together to provide information and support, both practical and emotional, along with services that are geared towards ensuring that young carers' education and general development do not suffer. There is a need for co-operation between adults and children's services in social work departments. That might mean that the community care assessment of a disabled parent has to take into account that person's role as a parent.
The Children (Scotland) Act 1995 places a duty on local authorities to provide support to children in need, but only 6 per cent of known young carers have been assessed under that act, notwithstanding the fact that one third of young carers at secondary school miss lessons, have educational difficulties or signal in some other way that they are children in need.
The young carer's assessment is an important policy area because it will provide a framework for assessing young carers, giving those who are aged under 16 a direct assessment of their needs. The outcomes from the consultation that is being considered by carers' organisations will be warmly welcomed as a positive step forward.
I share Donald Gorrie's view that the problem is identifying young carers, of whom around 6,000 have been identified in Scotland.
The "Strategy for Carers in Scotland", which was published in November 1999, contains excellent commitments to young carers. When the minister sums up the debate, I ask him to give us an update on the proposal to introduce
"legislation to enable carers under 16 to have for the first time a direct assessment of their needs"
and the further commitment that local authorities are
"to pay particular attention to young carers' services."
A further proposal from the carers' strategy, which Donald Gorrie mentioned, was that the Executive was to
"work up proposals for research on what support is available to young carers in Scotland and what guidance is needed for professionals in health, education and social care.
The strategy also mentioned schools.
While the strategy's commitments and proposals are first class, we would have expected some progress on them after 18 months.
Eighty-six per cent of young carers are of compulsory school age and one in five of those children misses school regularly because of their responsibilities. Lateness for school, tiredness and missing school can lead to underachievement. We should not consider only the problems of school-age children, as their problems are likely to stay with them throughout their lives. As others have said, young carers can become isolated from their peers and may experience emotional problems such as stress, depression and the feeling that they have no control over their life or environment.
I have served on the Health and Community Care Committee for two years, during which we have examined care in the community for the mentally ill, the disabled and the elderly. We have complained a lot about councils failing to meet needs but, having done some reading for the debate, I was suddenly made aware of the fact that while some needs can be identified, we should be concerned about the needs that cannot be measured. I became aware that a level of responsibility that would be difficult for an adult to undertake mars the childhood of young carers. The problems of someone with a physical difficulty are evident—it is easier to assess their needs and for support groups, doctors, nurses and social workers to meet those needs.
When I was reading up on the issues that surround this subject, I learned that the most serious problems are those of children who care for parents with drug and alcohol problems. Not only are those problems immeasurable, they are exacerbated by the household debts that can arise when a parent's addiction becomes the household's main financial priority. I do not understand drug and alcohol problems and I do not know how I would cope in such a situation, but we expect children to cope with adults who can change from being loving parents to being violent and aggressive in a short period of time. It is little wonder that the lives of young carers can be muddled, confused and unstable, which can result in children becoming ill-equipped for relationships in adulthood.
Many children are drawn into the world of illegal drugs before they have any understanding of what that world is all about. All they have is a willingness to tend to their parents' needs to get the love and security they seek, while their parents offer little or no guidance or support in the early years.
When the minister sums up the debate, I ask him to consider the problems of drug and alcohol abuse, rather than the needs that can—or cannot—be measured, or the availability of access to the internet or NHS helplines. When someone presents at a GP surgery with alcohol or methadone addiction problems, we should also take into account the children in their household.
I join other members in congratulating Donald Gorrie on securing this debate, which is on an important area. It is useful to celebrate the occasion of the formation of the national young carers forum. I support Donald Gorrie's call for that forum to be helped.
I feel strongly that, among other things, young carers need to have an advocate. The problem for many young carers is that they have to find their own way round so many different services and so much bureaucracy that it is extremely difficult. Instead of things being made easier for them, things are made more difficult.
Mary Scanlon referred to needs assessments. Young carers are entitled to needs assessments, but do they know that? How do they know that they are entitled to needs assessments? If we do not identify young carers in the first place, they will not look for needs assessments.
Much more careful planning and much more joined-up thinking is needed. Young carers need relief and respite as much as adult carers do. The welcome additional funds that are going into respite care, which the Executive has announced, need to be used for young carers.
The other thing that we need, which the Executive has largely recognised, is one point of contact for all young carers—or at least for the vast majority of them, who are of compulsory school age—which must be the school. We need to establish units like the one in Alloa Academy, in which youngsters who are in difficulties or who are having problems can be supported or helped. Such units are important. The unit in Alloa Academy takes youngsters who have perhaps arrived in the morning tired and without breakfast—perhaps having supported a difficult family situation in which they have acted as the carer—and negotiates on their behalf what they will do within the school that day. The unit provides them with breakfast, if that is the first thing they need.
There is a caring approach within the school. Previously, although individual teachers may have recognised the problem and on occasion endeavoured to give support, such children either ended up being excluded from school or would feel that schooling—which was already difficult for them—was becoming impossible. I welcome the establishment of such units and I hope that they will be extended. I know that the Executive's strategy documents have recognised that problem, which Mary Scanlon also referred to. We need to hear how progress is being made.
Community schools are an example of where progress is undoubtedly being made in joined-up thinking. Community schools involve not only the teachers and those in the units that I mentioned but other health professionals and other care workers. Such schools provide a better opportunity for joined-up thinking.
However, there has not been enough joined-up thinking about the group that I am most concerned about—the people who have either a temporary illness or an illness, such as a terminal illness, that is of a fixed period. The current division between primary care and social work does not serve people in those circumstances well.
During my 30 years in general practice, there were at least four periods when we had social workers attached to our practice. The enhancement to my ability as a doctor and to the ability of my team to provide a comprehensive service to families and to recognise the needs of groups such as young carers who have to deal with a family illness was very much enhanced during those times.
Reversal of the separation of social work and primary care would provide the opportunity for joined-up thinking. There would be ready identification, which would mean that services could be provided.
I thank Donald Gorrie for giving us the opportunity to have today's debate.
I congratulate Donald Gorrie on securing today's debate, which follows national carers week. I join him in congratulating the young carers who, at their recent conference in Linlithgow, formed a national young carers forum.
As more than one member has said, estimates show that there are more than 6,000 young carers in Scotland—that is, carers under the age of 18. The wide range of roles embraced by the word "carer" and the fact that some young carers and the people for whom they care are not known to the statutory agencies mean that the figure is likely to be much higher, as Rhoda Grant confirmed.
Many young carers find that helping to care for an ill or disabled parent, or other relative, is rewarding. However, many are likely to find themselves spending a large part of their time providing care or taking on full responsibility for doing so. Like Donald Gorrie, I pay tribute to the huge contribution that they make to family life.
Young carers, like all carers, need recognition of, and support for, the invaluable work that they do. At a reception hosted in Edinburgh Castle by the First Minister and Mrs McLeish to mark the start of national carers week, the Scottish Executive paid tribute to the remarkable contribution made by Scotland's carers, including our young carers. I was pleased to meet some young carers at that event, two of whom specifically lobbied me in support of Donald Gorrie's motion. We need to ensure that we listen to carers if we are to fulfil our commitment to support them as a central and vital component of a modern health and social care service that is fit for the 21st century.
Mary Scanlon and others demanded Executive action and a report. Our commitment to carers is evidenced by our carers strategy and the changes that we have introduced as a result, which are already beginning to benefit young carers. Young carers support groups are now expanding as a direct result of the £10 million a year for carers services that is available to local authorities under the strategy. As I indicated in yesterday's debate, we are monitoring the use of that money and the extent to which carers have been involved locally in decisions on its use.
Young carers will also benefit from the additional resources that are being made available from this April to authorities to provide an extra 22,000 weeks of short-break services across Scotland each year by 2003-04. A total of £5 million is being put in this year; £6 million will be put in next year; and £11 million will be put in by year 3. Social inclusion partnership resources are also helping young carers. For example, £210,000 is being spent in Dundee on a project to identify and support young carers and £500,000 has been given to the voluntary sector for carer-related projects, including £37,000 to the Princess Royal Trust for Carers to help to develop standards for young carers projects and to help with other purposes. We plan to do more.
Mary Scanlon asked about legislation. We are consulting on proposals for legislative changes to help carers, including the proposal to give young carers for the first time the legal right to a direct assessment of their support needs. Rhoda Grant commended that and, of course, young carers support projects have been consulted about it.
I wonder whether it would help to inform the consultation process on legislation, and whether it would be an indication of positive support by the Executive for the national young carers forum, if the minister agreed that it would be helpful to hear the stories of some young carers in this chamber and to have young carers from throughout Scotland come to this chamber—in a similar way to what has happened on other occasions on other issues—so that we can hear their stories and hear what they would like from legislation.
The consultation has certainly been very inclusive already. I am sure that, during the stages of the long-term care bill, the Health and Community Care Committee will ensure that that request is complied with.
Mary Scanlon also asked about research. We will shortly be commissioning research to establish how young carers' needs are being addressed across the key agencies of health, education and social work—the very agencies that Donald Gorrie mentions in his motion. Through that research, we hope to identify best-practice examples of how best to meet needs. Thereafter, through guidance, we shall promote those examples across the various agencies. That will result in more effective partnership working, quicker decision making and better support packages for young carers.
Donald Gorrie referred to teachers. Teacher education institutions have been asked to include the needs of young carers in initial teacher training. The research that I referred to will help to assess its impact.
The carers strategy focuses on services, legislation, monitoring, standards and information. I have covered, albeit briefly, the first four. The last aspect—information—is important for all carers, but perhaps particularly so for young carers.
To help to raise awareness of young carers issues in schools and to help young carers—hidden or otherwise—we have made young carer information packs available to all primary and secondary schools in Scotland. I am pleased to say that we are also helping to fund, through the Princess Royal Trust for Carers, the creation of a young carers website and the production of a young carers practice guide, which will set out best practice on how support projects for young carers can be delivered efficiently and effectively.
Of course, there is more to do. Several members have referred to the need to address the issue of hidden carers. We are determined to do that. In fact, that is a major subject of the consultation paper that has been drawn up by the carers legislation working group.
Richard Simpson made an important and interesting suggestion about advocacy. We are driving that agenda forward and have asked health boards and their partners to have integrated advocacy services in place by the end of the year. The intention is that there should be seamless services across health and community care.
In conclusion, it is vital that the many young carers who have made a conscious decision to help vulnerable family members should be supported and protected from the stresses that caring can bring. At the same time, we need to protect those young carers who may not be caring through choice and we need to safeguard young carers against having to provide inappropriate levels and types of care.
In discussions on those complexities, the voices of young carers need to be heard. That is why we helped to fund the young carers conference, which led to the establishment of the national young carers forum. I welcome the concept of the forum as an avenue for discussing the wide range of issues that affect the lives of young carers and I look forward to the forum's contribution to improving those lives.
I end by welcoming once again the two debates that we have had on important carers issues this week and by assuring members of our determination to make further progress on those issues for the benefit of all concerned.
Meeting closed at 17:42.