Equal Opportunities Committee, 25 Mar 2008

Meeting date: Tuesday, March 25, 2008

Official Report 235KB pdf

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Carers

Agenda item 2 is a round-table discussion on carers. Before we start, I will introduce myself and ask everyone round the table to do likewise. All that is required is a brief indication of who you are and who you represent.

I am Margaret Mitchell, the convener of the Equal Opportunities Committee and a member for Central Scotland.

I am a member of the Scottish Parliament for Central Scotland.

I am the policy manager at Carers Scotland.

I am a member for North East Scotland.

I am network co-ordinator for the coalition of carers in Scotland.

I am a member for the West of Scotland.

I am chief executive of Crossroads Caring Scotland.

I am a member for Glasgow.

I am the chief executive of Enable Scotland, the Scottish organisation for people with learning disabilities.

I am project manager at the Lighthouse Foundation family support project.

I am the MSP for Hamilton North and Bellshill.

I am the chairperson of North Lanarkshire Carers Together.

I am an MSP for Glasgow.

I am the young carers project co-ordinator for Perth and Kinross.

Thank you.

Our purpose in holding a round-table discussion on carers is to gain greater understanding of any areas where unpaid carers feel that they face discrimination. Depending on the issues that are raised during the discussion, the committee will decide on possible follow-up work. It will help if everyone keeps in mind that we are looking for practical issues and suggestions that are within the competence of the devolved Administration.

Although the discussion will take place in a round-table format and we will take a less formal approach, in that participants will be able to talk to each other to respond and seek clarification, it will help if everyone indicates to me when they want to speak, so that we have a semblance of order.

We have highlighted several broad issues that we want to touch on. I will start by asking about access to services. Are services sufficient and is there a problem? Would someone like to start off that wide-ranging discussion?

Although there are differences throughout Scotland, in general, access is difficult for most carers. Our submission states that about 40 per cent of carers find that their access to services is poor or that the services that are available do not meet their needs. For carers who are trying to maintain employment, that can make the difference between staying in employment or having to give up their job. Problems with access to general support services can have a knock-on effect on access to other services, such as health services. If a carer cannot get cover to attend, for example, an appointment with a general practitioner, it can have an impact on their health.

Following on from what Fiona Collie said, good health care for carers is important. Carers put their own health on the back burner while they carry out their caring role, and often, a few years down the line, they are decidedly unwell—they may be depressed or may suffer from all sorts of conditions. It has been suggested in recent discussions that perhaps carers should get an MOT once a year, with the GP practice nurse taking their blood pressure, doing a blood test and all the usual things. It is better to prevent carers from becoming ill than wait until there are two casualties—the person being cared for and the carer.

It has been suggested that, when the needs of the disabled person or whoever is in need of care are assessed, the carer's needs should be assessed at the same time. Is that done now?

Carers assessments are being done, but they may not be reaching their full potential. Carers often say that they are fine, but the person who does the assessment has to reach beyond that.

And dig a bit deeper.

At the cross-party group on older people, age and ageing, we heard that an older person who cares for her 60-year-old son could access only 25 days a year of respite care. Is that the maximum in all local authorities or is there a postcode lottery? Do local authorities allow different amounts of days or hours?

I am sure that Jack Ryan can give more detail on that, but it seems that respite care is provided on the basis of what the local authority can offer and also on the basis of assessed need. Provision varies widely.

Perhaps Norman Dunning can give us an overview.

Our experience is that respite care varies between local authorities, and even between different places within a local authority area. There is no uniform standard. It is certainly worth considering whether at least a minimum standard should be recommended—if not laid down—by the Parliament.

May I continue with my next point, convener?

Yes.

Carers have a statutory right to an assessment under the Community Care and Health (Scotland) Act 2002, but the problem is that they have no right to services after they have been assessed. I have received feedback from a number of our members that the assessments lack credibility. What is the point of assessments if there is no follow-through? It seems logical to us that local authorities should have a duty to fulfil the assessments, just as they have a duty to fulfil other community care assessments. Without that, the assessments will continue to lack credibility and carers will not come forward for them.

In relation to Elizabeth Seaton's point about MOTs for carers, we are particularly concerned about older carers. Sandra White touched on that. We are aware of a lot of carers in their 70s and 80s who look after their sons and daughters, who are becoming elderly. Our group of elderly carers suggested to us that routine assessments should be offered. We do not want to force assessments on people, but carers should be offered an assessment when they reach the age of 60 or 65. Social services should get in touch with them every three or four years and say, "Can we help?"

We sometimes forget that carers do not necessarily identify themselves as carers, particularly if they have been caring for 30 or 40 years or more. They do not necessarily wear that label. Sometimes, they need somebody to come and knock on their door, saying, "Do you need a bit of help?"

That is a valid point. When we passed the legislation that introduced assessments, we did so with the best intentions, but if there is no requirement to provide care or services that meet people's needs, the legislation is not doing what it was intended to do.

I will pick up on Norman Dunning's point about assessments, but with particular regard to young carers. Section 9 of the 2002 act clearly identifies that young carers—such as children who have a caring role—have a right to an assessment of needs as well. I agree that the credibility of the carers assessment is sometimes questioned, but it is important for children in the caring environment to be identified as young carers, so that they can access other services, especially in the education environment, where other legislation applies, including the Education (Additional Support for Learning) (Scotland) Act 2004. Whether or not the carers assessment is credible, it is the first port of call for young carers, and they can move on from there.

I agree with what others have said. Carers have to go through several stages to access services. The first stage is identification as a carer, which is improving through, for example, the national health service care information strategies. The next stage is assessment, which can be a barrier. Apart from anything else, waiting times for assessments are long. We did some research with our members and found that one in seven had to wait six months for an assessment.

The next stage is whether services are available when someone has been assessed as needing them. We found that one in five did not receive the services that their assessment showed they should have, the main service being respite. I am sure that the committee knows that there is a great shortfall in respite provision. Carers do not receive as much respite as they need, which can affect employment, and in many cases, especially when they look after somebody who has complex needs, the services that they require are not available from their local authority and they end up with no services at all.

My first question comes from a root of complete ignorance. Is access to respite care services means tested and, if so, does the means testing vary between local authorities or is the same means test applied nationally?

My second question is on assessments. In the old days of the record of needs, local authorities could minimise the impact on their budgets by delaying assessments, thereby delaying their responsibility to provide the services that were required as a result. Is there any anecdotal evidence that that is happening?

On charging for services, there is some confusion, which we are concerned about. As you know, carers should be regarded as partners in care and, as such, they should not be charged for services. However, the Convention of Scottish Local Authorities guidance is unclear. If someone looks after their partner, their income can be taken into account. In effect, they are charged for services. Also, research by Carers Scotland shows that people often do not take the full amount of respite because they feel that they cannot afford to pay for it. That can affect health and employment.

Each local authority sets its own charges. Some carers from Fife have told us that the charges there have changed. The rate per hour is very high, and if someone needs two carers for moving and handling reasons, for example, they are charged double. Because of that, some of our members have reduced the amount of respite that they receive.

On Hugh O'Donnell's second question, there is anecdotal evidence that measures are delayed to save money. A number of carers believe that to be the case, but we cannot evidence it through research.

I do not want to change the direction too much, but so far we have discussed access to services, general concerns about the lack of provision, the failure of agencies to provide assessments, and resource allocation. I am interested in the employment side, and particularly employment discrimination. Can anyone give us anecdotal or statistical information on the extent to which people are denied employment because it is known that they are a carer? Are people denied promotion because it is known that they care for someone? In particular, are young people denied the opportunity to—

I am going to stop you there, Michael, to ensure that we cover matters in an organised way. We will move on to employment—someone expressed an interest in asking that question before you came in.

I just wanted to get that question in, Margaret. Thanks.

It is worth putting on the record the amount of money that unpaid carers save the Scottish economy every year. The figure helpfully was given in the written submission from Carers Scotland: it is £7.6 billion, which puts in perspective the cost of looking after carers and ensuring that they continue to be able to perform their task.

We were talking about local authorities providing assessments. I recently held a training session, along with Carers Scotland, for social workers and NHS staff. The social workers all held up their hands and said that there was no point in carrying out assessments, as there are no resources to provide what people need. Perhaps the problem comes down to a lack of resources going into the community to pay for the services that are required.

My point concerns carers who are stigmatised in our society. Our charity works with families in which a family member is addicted to drugs or alcohol. Many of the families that are registered with us consist of grandparents who have had to take over the role of caring for their grandchildren because of their own child's addiction. Most of the families that we deal with do not have social worker involvement, so they find it difficult to access services that can help them.

The new kinship carer allowance is coming in at the beginning of April, but as an organisation we do not have the right information to give to families about how they can access it. There is a good document entitled "Getting it right for every child in kinship and foster care", but most of our families cannot access it, and they do not realise that they need to go to organisations such as Citizens Advice Scotland to get information on how they can do so. We could overcome that by, for example, educating service providers and running a media campaign to raise awareness about how those families can access that money.

Many of those families are really desperate. I will talk about three of them. One is a grandmother who looks after her two grandchildren because of her daughter's addiction. She has had to take on three jobs, because she does not get anything—all she gets is child benefit. Another lady, who is a pensioner, does not get anything—all she gets is child benefit—and she is finding it difficult to manage. Another grandparent cares for her grandchild because her son died and, again, all she gets is child benefit.

There must be thousands of families that need to be given information. Those people are carers, because they have taken over the care of children. We all have a responsibility to ensure that children are safe and have a happy childhood. I strongly advocate a little extra help for those invisible carers.

Many people do not even realise that they are carers.

We are moving quite fast and covering lots of different points. If one thing comes out of the discussion, it should be pressure for—and I am sure that there will be—a media campaign for the kinship carer allowance. The committee should definitely push for that. I am sure that the Government would be receptive.

I would like to hear examples of good practice, because sharing them so that other areas can copy them is the way to improve. Otherwise, one might be dismissed as complaining. One example of good practice is that, in the case of elderly couples, there are GPs who are careful to consider that the person who is the carer might be older and have needs themselves.

Elizabeth Seaton talked about resources. I have an example that might be useful. A man was housebound, and as a result he was visited at his house by a chiropodist or podiatrist. His carer was also housebound, but she could not be seen at the same time. Instead, she had to make a separate appointment, so her feet were not seen to.

Does anyone have an example of good practice that they would like to be extended?

From the discussion, it is clear that access to services starts with assessment. There are some good examples of assessment models; in particular, the minimum standards for assessment model that is going through at the moment. There is a type of assessment called the user-defined self evaluation tool that is much more person-centred and ensures that carers are asked about employment and so on. It is a full assessment, and there is a review process afterwards.

We need to ensure that there is proper guidance, that the standards are implemented throughout Scotland, and that there is training for staff. One of the difficulties is that staff are not promoting carers assessments in the way that they should be—they might say, "You're entitled to an assessment, but is it really worth while?" They need to be properly signed up to assessments and to promote them to carers. They also need to view carers as whole people, rather than just identify one or two things that they might need.

At Crossroads Caring Scotland, we provide short breaks in a home. We have 48 services throughout the country. Our managers say that carers come to us far too late. People tend to access the service when they reach crisis point. We were really encouraged when the care 21 report "The Future of Unpaid Care in Scotland" was published, because it made statements about using respite care and other services as a form of prevention, and about the need for those services to sustain the caring relationship and to help people to remain in their homes.

The key point, however, is that we have not seen a shift with regard to additional funding. As voluntary organisations, we are always coming to government and saying that it is all about extra money, but in this instance we are talking about a long-term investment in the country. The convener mentioned the £7.6 billion that Scotland saves by having carers; if we used a fraction of that every year to give people a regular break—a couple of hours here and there—we might be able to sustain a fairly huge workforce in the community.

I recently came across an example of good practice involving a man who had to give up his job around 20 years ago to look after his wife who suffered brain damage following a heart attack. She needs constant care, so we go in twice a week and give the chap a break of two or three hours. Every couple of years he does a different degree with the Open University, which keeps his mind alive and his confidence up. We have also been able to provide additional care that allows him to sing with a choir. Those small things enable him to sustain his wife at home full time. Other than that, she goes into respite care only for a week to allow him to take a break away; the rest of the time he is there. He is not asking for the £7.6 billion to be invested to replace that care; he is asking for a little contribution.

It is a lifeline to enable him to carry on and to give him some stimulus.

I will follow on quite neatly from what Jack Ryan said. As I said earlier, it is crucial to find and identify carers before the situation reaches crisis point. A lot of people never come for any sort of help until that point is reached. Two councils in Scotland—Dundee and South Lanarkshire—have undertaken studies of older carers in their areas, and in each case they identified a lot of people who were not known to be carers but who were in a caring situation.

The fear is that if they are identified it will cost more. Well, it does not necessarily cost more, because breakdown can be prevented by giving people the help that they need beforehand. Knowing the things that people are seeking is not rocket science. For instance, they want to know how they can let someone know when they have a problem or there is an emergency, particularly if they are a single carer. They wonder how, if something happens to them, somebody will know the needs of their son, daughter or whoever they are looking after. There are good schemes around to do that, which we can take to people.

People want to know what services are available in their area and how they can get services that may ease their task now and build up their resilience. We looked at examples of what has been done south of the border, where in some local authorities dedicated workers have been appointed to network with carers. The aim is first, to identify carers, and secondly, to help them to support one another, so that people build up informal networks of support, which are very helpful. Such measures are not hugely expensive.

I suppose that the appointment of dedicated workers to identify carers enables people to build up expertise.

Exactly.

The Lighthouse Foundation is great at working in partnership with other organisations. We have a good relationship with Strathclyde Police, HMP Kilmarnock and the Scottish Drugs Forum. We also work closely with and refer many young carers to advocacy services. Every organisation needs to realise that it cannot work in isolation—we must all work together to benefit our families.

That is an important point.

I want to pursue the issue of partnership working. In North Lanarkshire, voluntary organisations are working well with the NHS and the council. Recently, our development staff member began to input to general practitioner surgeries, to encourage GPs to flag up carers, which they might not normally do. She takes along a video and information packs. We have had positive outcomes from the initiative, which seems to be working extremely well.

That is a good way of identifying carers, because people may go to the GP when they are under pressure. If the GP delves a little deeper, they may find that there is a caring issue.

GPs have not always been open to suggestions, but now they are. There is a similar six-week project in pharmacies in Lanarkshire. They put up a notice that asks "Are you a carer?" and provides details of a freephone helpline. Organising the project took a bit of doing because pharmacists, like GPs, are independent and do not have to abide by particular rules. That is an example of good practice in North Lanarkshire.

That will certainly widen the net, as some people who never go to their doctor go to the pharmacist because they self-medicate.

That is right.

I can highlight a current example of good practice for young carers in the education system in Perth and Kinross. It is widely known that it is extremely difficult for people to identify themselves as carers—child carers are doubly disadvantaged. We have worked closely with schools—predominantly secondary schools—in Perth and Kinross. Secondary schools hold integrated team meetings, to which only statutory members such as social workers, police officers, community workers and head teachers used to be invited. For the past 18 months, our project has also been involved in those meetings, which has allowed us to identify potential young carers who are in transition from primary school to secondary education and has flagged up cases of young people who are struggling, some of whom may be young carers, so that we or other support agencies can provide them with assistance.

Schools in Perth and Kinross have become far more aware of young carers' potential needs. It is not enough just to identify someone as a young carer—schools must also understand what that means for the individual. For example, detention after school may be detrimental to a young carer. Before we became involved, schools had no understanding of that. At the beginning, there was opposition to our involvement in integrated team meetings. On several occasions, we were asked to leave after the five-minute introduction to meetings, before people got down to the nitty-gritty of talking about children. However, the situation has changed over time. We will always come up against that problem, especially when we approach new environments, but our involvement in integrated team meetings has had a positive impact. In the past 18 months, there has been a 40 per cent increase in referrals from schools.

I presume that attitudes have changed because of the benefits in your being at meetings to give greater insight and to solve potential problems.

The arrangement also allows schools to be more open to identifying potential support opportunities for young carers, such as drop-in sessions, classes and assemblies. We had difficulty getting involved in teacher training days, but we have been involved in a couple and the system is becoming increasingly open, although some institutionalised barriers still exist in education.

It is obvious that the issue should be slotted into teaching training days, if there is the will to do that.

The network of local carer organisations is an example of good practice. Scotland is strong in that respect, compared with other countries. There are, in all but a couple of areas—parts of Argyll and Bute and the Western Isles—centres where people can receive information, advice, emotional support, training and so on. Capacity needs to be addressed. Under NHS care information strategies, more health staff are signposting carers to such centres. The general medical services contract is having the same effect. At some centres, referrals have gone up by 100 per cent, but corresponding additional resources have not been made available to help them cope with that increase. The centres are incredibly important and provide carers with a vital service. We need to be aware that they are increasingly under pressure and need additional resources.

I want to highlight cases in which the cared-for person will not accept services under any circumstances. Such cases represent really difficult situations in which carers need support. In one case involving an older couple, the local authority provided an ironing service for the carer to give her a break from something that she had to do. It also provided some equipment in the home to save her having to do a lot of bending and lifting. Local authorities must be more creative about what they put in place when a cared-for person will not accept services. That is true of a number of people.

The issue is sensitive. Authorities cannot take a one-size-fits-all approach and must be more flexible, so that they offer services that people will accept. That can make the difference.

Definitely. Often individuals do not want to receive personal care services and would be happier for their husband or wife to provide them. We must ensure that there is support for those carers.

My point relates to a comment that Kathleen Bryson made. When you were talking about family alcohol and drug problems, you referred to "stigmatised" carers. I am not sure whether you meant that the family was stigmatised or that the carer, specifically, was stigmatised. That is an issue for the Equal Opportunities Committee. Do you mean that carers are stigmatised? If so, who stigmatises them? Are they stigmatised by public services or by people generally? What are the effects of such stigmatisation on the carer and the cared-for person?

Many of the families that are registered with us do not want their neighbours to know that their child is a drug addict because of the theft and other crime that is associated with that, so they tend to be isolated. In some cases, people have to take over care of their grandchildren. Until they come to us to get a bit of extra support, they feel that there is no one to whom they can turn. Society in general tends to look down on people who have a family member with an addiction.

It then becomes harder to reach the carer.

Indeed, because they do not want other people to know what is happening in their lives. I know a grandmother who has had to take over the care of her grandchildren because her son is an addict and his name is never out of the papers for mugging old women and so on. Although the woman needs financial support, she does not know where to get it and is embarrassed to ask for help. We need to think about the whole package.

We have heard about some positive examples such as the Perth and Kinross project. Could the committee see the paper on that project?

On stigma and access to information, which Kathleen Bryson has just touched on, we should speak to the Government about launching an information campaign that is targeted not just at services and agencies, but at carers themselves.

Are young carers benefiting from education or are they—as I assume—finding themselves to be at a disadvantage in that respect? I think we know the reasons why they might not be benefiting from education, but can anyone give us examples?

Education has a negative impact on young carers. If you ask them whether their priority is to get themselves up, get themselves on the school bus and get to school by the time the bell rings at 9 o'clock, or to do what they do every day and look after the cared-for person at home, they will tell you that there is no contest. Their number 1 priority is the care that they provide at home.

The stigma that attaches to a caring role, no matter what it is, can be made worse by mental health or drug and alcohol difficulties. One in four young carers will suffer from mental health difficulties at some point in their life, and they certainly find it extremely difficult to socialise in a school environment. Everyone describes young carers as being mature beyond their years, but that can mean that they find themselves unable to communicate with their peers. They cannot talk about what was on television the night before or what they did at the youth club, although they can name all the medication that their father, brother or mother is on—which, of course, is of no interest to their peers. As a result, they find themselves massively isolated in school. With young carers facing such isolation, the low priority that they give to attending school and the school's understanding of their needs, you have a time bomb on your hands.

I know that other members want to get in, but I have another quick question. Is it the case that some young carers do not necessarily come forward to projects such as yours because, for example, they care for drug-addicted parents and that because of the stigma they simply slip through the net?

One of our duties of care is to ensure that information is available for young people to access voluntarily. After all, if young carers do not come forward, we cannot identify them and give them support. We need to raise awareness of young carers, their needs and rights and how they can access support. We raise awareness not only through social education classes in schools; we also ensure that information is freely available in schools and that teachers—who, unlike us, are around pupils every day—are made aware of information that should be passed on to a pupil who might turn out to be a young carer. People have already mentioned information sharing and partnership working. You do not have to be Einstein to work out that through information sharing a teacher, guidance teacher or head teacher should be able to spot potential physical health, mental health or drug and alcohol problems in a pupil's home and conclude that that pupil might have a caring role.

I always get upset when we talk about young carers; after all, they are children and should not be expected to have a caring role. I am glad that you mentioned their rights and needs, because I believe that that is where we should be concentrating our efforts.

As an ex-teacher, I think that it is essential that teachers are aware of pupils' family circumstances, and it is absolutely fine for these issues to be raised in social education classes or whatever. However, I am concerned that some schools simply accept that children with caring duties at home will prioritise those duties over their education. That is a very dangerous road to go down, and I believe that we need to strike a balance in that respect.

The education system should be picking up such matters. For example, young carers are clearly identified in the Education (Additional Support for Learning) (Scotland) Act 2004; however, they want to be recognised not as different but as equal to their peers, and the support mechanisms that are established in schools should allow that.

My point is that support mechanisms should be available at home to ensure that they do not have to be supported in their work at school.

Sorry—I get your point.

Young carers can sometimes irritate teachers either because their minds are always elsewhere and they lack concentration or because they are always disrupting classes. However, they might be unable to concentrate because, for example, their house was in turmoil that morning. The answer might be as simple as allocating that child a card that they can pass to the teacher, allowing them to leave the classroom discreetly and with no questions asked for five minutes so that they can phone home.

All the support mechanisms that are put in place should be designed to reduce the stigma that is attached to being a young carer. We are not asking for massive support structures in schools—

But you ought to be asking for much more. You should, for example, be demanding that there is no such category as young carer.

The first thing that a young carer wants is to be recognised as a child with the right to attend school and have an education—end of story.

I think that we share the same view. In an ideal world, we would start from the position that Marlyn Glen has set out.

If you do not ask, you do not get.

I take your point. However, the evidence that we are receiving this morning has set out some helpful examples of good practice that could be reproduced throughout Scotland.

We have a bit of a backlog of people who want to speak.

Perhaps I can highlight another example of good practice. In one of the families whom we deal with, the partner died of an addiction problem. The mother referred herself to seek support and although the child goes to school he is very disruptive, always gets into trouble and keeps getting excluded and expelled. Although he is 10 years old, he has such a reputation for bad behaviour that it is always commented on at his various conferences. When we got involved with his case, we went to the school and had a conference with the teacher at which we explained the child's situation. We have referred the child to our play therapist counsellor, who has put mechanisms in place for him, and we are working with the mother. The child's problem has been identified and resolved, so perhaps we are making a wee difference in that respect.

Just through communication.

Yes, just through everyone talking with each other. It is all about partnership.

On the point that was made by Stewart McFarlane and Kathleen Bryson about partnership, do issues of confidentiality have a negative impact on interdepartmental or interagency partnership working? Perhaps someone could say, by way of an example, "Here's a way we have overcome it" or "Here's a problem that we faced as a result of it". I am thinking of the philosophical differences among, for example, an education department, a social work department and a voluntary organisation.

We have an information-sharing consent form that we ask our families to sign, and that seems to work. If anyone has a concern about the safety of a child, confidentiality issues should not be involved.

There should not be any confidentiality barriers to sharing information. The getting it right for every child agenda—Kathleen Bryson mentioned that earlier—is about collaboration among all the voluntary, private and statutory agencies, especially on the protection of, and duty to, every child.

The confidentiality circumstances are improving, but for us it is a question of partnership working and building relationships with our local authority providers of children and education services, education and health. The situation with education and the children and education services has improved dramatically in the past four years. A confidentiality barrier was in place when I started, but as a result of some good practices, including the one that I mentioned earlier, the sharing of information has become far easier. It is a question of building relationships—confidentiality should not be a barrier.

I want to follow the discussion, which Marlyn Glen's question took us into, on the discrimination that people feel or experience in education and the workplace. That was, essentially, what I wanted to ask about earlier. Is there any evidence that the discrimination that people feel or experience is diminished if a proper assessment is carried out and resources are put in place? Is it about the attitude of those who deliver the services or employment, or is there a failure of the agencies properly to assess what people, especially young people, need?

I will bring in Bill Kidd, as I want to widen out the employment perspective.

The question is linked but is wider. I read in the Carers Scotland submission that between 170,000 and 180,000 people are new to caring each year, but about the same number cease to be carers for whatever reason—perhaps the death of the person who is cared for or their being taken into full-time care. Is there continuing care for the carers once they cease to be in that role, either from the caring organisations or the Government, or are they just cast out to search for the employment or education opportunities that they have missed out on during their years of caring?

So we are looking at the experience of older carers in employment.

Carers who have been bereaved—I am one—are not thrown out of the voluntary organisations. In fact, they are welcomed because of their expertise and the help that they can give in supporting such organisations. Further education also exists, and we can go on different courses. Generally speaking, we do not cast out our bereaved carers.

Many carers who are of working age, and those who are still children, will have missed out on opportunities that they would have had if they had not been in a caring role. Do they take up those opportunities, or do they never make up the ground that they have lost?

If someone has been in a caring role for a long time, it is difficult for them to catch up. People can access lifelong learning through their local councils, but it is difficult. People may want to do that, but others may slip through the net and decide to stay at home and do their own thing. However, the care exists if they want it, and there are courses that are geared towards older people.

From the voluntary organisations' perspective, it is not that carers are thrown out once they stop caring, but there is no specific support to help working-age carers back into work. There is no specific support to help them to retrain or regain some of the skills that they lose while they are carers. Our research has shown that, for a number of carers, there is a lifelong impact on their earning potential and career progression. Having a caring role can knock them back by five or 10 years. Even six months out of the working environment can have an impact.

I want to take a step back and ask whether older carers in particular can maintain their employment. That touches on Michael McMahon's question. Can people get days off because they are carers without losing promotion opportunities or their employment? Norman Dunning mentioned the situation south of the border, where the legislation seems to provide for a duty to carers, whereas in Scotland carers have only to be "considered". What is the general feeling among the panel?

Many carers find it difficult to continue employment and end up giving it up because the care services that would support them and enable them to go to work do not exist. Sixty per cent of carers at the sharp end have to give up employment because of their caring responsibilities. Carers who continue to work often find that more flexible schemes, such as direct payments, work better than trying to get a care package from local authorities. It can be difficult to access direct payments, so easier access to such schemes would certainly help carers in employment.

Another point about carers who are juggling employment and caring responsibilities is that care packages are often put together for working hours. It is difficult for such people, almost more so than for any other carer, to get a break from caring. They need so much support to enable them to get to work, and they take on the caring responsibilities when they come home. When do they get a break?

First, I do not think that sufficient is done to help ex-carers back into work and to assess their skills and knowledge. One thing that is forgotten is that people who have been family carers know a lot about caring, and there is a lot in the caring professions that such people can do. Organisations such as mine are keen to recruit those people.

We did some work with the equal access to employment programme in Glasgow about working with employees in carers centres. One disabling factor that we found was the attitude and responses of the professional workers around the carers. Both their support workers and workers in the employment field did not think that they could work. They would see that someone had caring responsibilities and immediately assume that they could not do this, that or the other, without doing a detailed assessment, which contrasts with the work that we would do with an employee who became disabled. As an employer, we would be obliged by law to carry out a careful assessment of what the person could do and the barriers that we would have to overcome. People do not seem to do that for carers. There is sometimes an assumed barrier, which needs to be overcome.

Our work has brought to light a number of barriers to work that carers themselves have recognised. The barriers are pretty obvious, so I will not rehearse them all, but they relate to the difficulty of balancing the care role and the working role. They also relate to the unpredictability of the caring role. A carer may have made arrangements, but the situation might change or go wrong. That will have to be accommodated, although both the carer and the employer might think that that cannot be done. There is an irony in that we have learned a lot from working with employees who have child care responsibilities, but we have not translated that learning to employees who have other sorts of caring responsibilities.

Sandra White was right to mention the legislation south of the border. We would like that legislation to be examined. The committee will know about the opinion of the European Court of Justice that to discriminate against a person who is caring for a disabled person is almost equivalent to discriminating against the disabled person. If that opinion becomes a full European judgment, Parliament will have to take it on board. It will be a big issue for employers. However, we could pre-empt any problems by thinking through how we can help carers get back into work. We have to make the best use of carers' skills, which are much undervalued.

You mentioned unpredictability and you should not have any qualms about stating what you might consider to be the obvious. It is good that we get such views on record during our round-table discussion.

Michael—has the question that you asked earlier been answered, or do you wish to raise it again?

I wanted to ask about availability of resources for assessments. If people are properly assessed, many of the barriers might disappear. Claire Cairns almost answered my question earlier with the statistics that she gave: when proper assessments are carried out and proper support is offered, many barriers can be broken down. Work that is done at the front end can lead to a reduction in the barriers later on. Is it a question of assessing people properly and allocating resources properly, rather than waiting until a person reaches a critical point and needs urgent support? If that happens, and if the person has not received support earlier, it will appear that they have been discriminated against.

Resources and effective assessment are important in arranging for services that suit carers. The legislation in England and Wales requires local authorities to take account of a carer's employment and of any wish to take part in education, lifelong learning and leisure. However, that requirement does not apply in Scotland. Nothing in any of the guidance for social workers says that, when assessing a carer, they have to take the carer's employment into account. Time and again, if a person is discharged from hospital, it is simply expected that the carer will care for them. No effective plans are in place that allow for the carer to be asked what he or she has on their plate, whether they have a job, whether they have children, and whether they have other family responsibilities. None of those things is taken into account.

When assessments of carers became more widely publicised, as has happened over the past five or six years, Crossroads Caring Scotland, as a provider, was almost standing with a catcher's mitt, expecting to receive an influx of new clients. However, that influx has not arrived; assessments of carers are not being carried out. A general issue arises to do with discrimination against carers, because they are not getting access to assessments.

I want to add a point about carers in employment. I have been doing some work with the Scottish Court Service, which offers strong support for carers. I have been very impressed by the way in which the SCS, as an employer, has been working with all its staff members who are carers. People are brought together in conferences and the SCS does its own assessments. That is partly because the organisation's chief executive is a carer who recognises that the care that a staff member provides is not the only issue at stake. In hard-nosed business terms, that person has been trained and is a resource. Unless they are invested in, the chances are that their employer will lose them, which will give rise to recruitment and training issues. Investment in carers is worth while not only from a hard-nosed business point of view—it also produces in an employee a feeling of loyalty to their employer, as a result of which they will work a few more hours at home or do a bit extra in the office.

We have just been given an excellent example of best practice.

Yes—I have been impressed with what I have seen.

Fiona Collie and Jack Ryan made excellent points and pinpointed what I wanted to say. There is a big worry about young carers who go into employment ending up in the benefits trap. I was amazed to read that, to be eligible to receive the carers allowance of £48.65 a week, a carer is allowed to earn only £95 a week, which results in their being caught in the benefits trap. At the same time, young professionals are encouraged to work abroad for a year and get paid for doing so. The Government now says that it will pay for all young people to take a gap year.

Benefit issues are obviously dealt with at Westminster. It all comes down to legislation. Local authorities and businesses will not voluntarily let people take time out because they are carers, so the legislation must be examined. We might be able to move on when the European Court of Justice decides one way or t'other.

People who are carers and who are in employment suffer because their pensions are affected and they cannot move on in their professions, with the result that they are caught in the benefits trap. We must give the matter serious consideration. Young people in that position will not obtain the education qualifications that will enable them to get a decent job.

I wanted to say that, even if it was just a rant.

Good stuff.

Many assessments are done on a person-centred planning basis, which often relates to the disabled person or the person who is in receipt of care. Can you envisage a method of assessment that encompasses the family unit, including the carer? Would such a method of assessment be a step forward in the provision of good practice to address some of the gaps about which we have spoken?

Would anyone like to deal with that question?

I will try to.

It is a bit outside the box.

A properly done PCP involves the carer. The most important thing for a recipient of care is usually their family and maintaining and improving their environment, which involves working with the people in that environment, including their carers. I would be quite worried about a PCP that did not take into account carers' interests and values and the compromises that are involved. Family work involves compromises because what is good for one member of a family might not be good for another. That must be taken into account; the situation is not pure.

In answer to the question, I can envisage such a method of assessment. Indeed, I would go further and say that such assessments are being carried out. I like to think that the staff whom I employ adopt such a family perspective.

If I may, I will return to the discussion about respite for carers, which is often seen as being different from the needs of the people who receive care, although the two are totally intertwined. If someone who is cared for has a holiday, takes a part-time job or goes on a social outing, their carer will receive respite. We must consider those two issues together. When we responded to the Scottish Government's consultation on respite care, we said, "Let's get a definition that is workable and wide enough to encompass such activities." I do not have such a definition, by the way. We must recognise that, in providing respite for carers, we provide the person who is being cared for with valuable opportunities for advancement and development.

That ties in to what I was going to say about the barriers to young carers entering further education or employment. It is slightly different for an adult in a caring role to go back into employment. I do not want to go back over the school scenario, but some young carers of school-leaving age have not managed to utilise the best possible avenues to achieve qualifications. On top of that, although they are allowed to go into further education—or to stay at home, because they now have the time to be the full-time carer they want to be—that avenue is closed off almost immediately due to lack of qualifications. For the majority, caring has been part of their socialisation and there are no other avenues for them to explore.

Getting employment can be a huge barrier. I know young carers who have gone into jobcentres and been asked, "How many hours a week can you work?" They have said that they want to work only certain hours because they have got a caring role and the response has been, "What caring role? Are you lazy? Don't you want to work full time?" There are stereotypical barriers for the young carer.

Respite services were mentioned. I would like more progress to be made on that, but it will come down to resources. I would like more progress to be made on allocating respite services for young carers at an earlier age so that they can access further education and either qualifications or career opportunities. It is about things that are as simple as accessing a college course. A young carer might leave school at 16 and be genuinely interested in the construction industry or the music industry. They might be aware that courses are available, but that is not an opportunity for them if their caring role at home must continue. There is very little for young carers aged 18 to 25—there is no transition. Services exist sporadically throughout Scotland—more so in England—for 18 to 25-year-olds, so I would like more.

We have almost come full circle to assessment and targeting, and ensuring not only that that gives a carer flexibility according to their specific needs, but that the services are in place—the respite that you are talking about.

I ask Marlyn Glen and Hugh O'Donnell to put their questions together.

I suppose that it is a given that the vast majority of carers are female. There are still huge expectations that women will care for children, partners and parents. I guess that that goes for young carers as well. Are there specific barriers and challenges for different carers? Is there a specific problem for minority ethnic carers?

Are the challenges facing new carers different depending upon the nature of the ailment that the cared-for person has? Kathleen Bryson made a passing comment about families of people with an addiction being labelled as problem families. Are some services harder to access for people with particular caring responsibilities, depending on the needs of the cared for?

We are looking for specifics.

In answer to the first question, carers are women, men, black and ethnic minority, from rural areas and older people, so they face similar difficulties to those that the general population faces, but there are also specific difficulties linked to their caring role. For example, a rural carer will have great difficulty accessing a number of services if they cannot get transport, which is a huge issue. Something that came up in our research was that even when someone has transport, if the weather is bad, that is it. How on earth could they hold down a job? They could not plan effectively.

On black and minority ethnic carers, I have just got hold of some research that shows that young Asian men are three times as likely to be carers as young white men. That statistic surprised me, because it had not come out before. We must build services and support based on the demographic changes in our country and on how caring roles are changing. Younger people are taking on the caring role and they will need specific support.

New carers will be in different circumstances depending on who they care for. We receive the biggest number of complaints from older carers who care for another older person. They often have the most difficulty in accessing the full package of services that they need, and often the person for whom they care has to go into residential care. We highlighted to the cross-party group on carers the fact that someone had said that that was tantamount to divorce, because they could not live with their husband any more, and yet we have the Human Rights Act 1998. New carers who are older face specific problems.

I am glad that you touched on transport, which I am sure is a big issue for carers of all ages.

Fiona Collie said that the ratio of carers who are young Asian men to carers who are young white men was three to one. Do you know the ratio of young Asian women carers to white women carers?

I do not have that figure, but I can get it for you.

Thanks.

I come back to Hugh O'Donnell's comment about barriers for new young carers. One issue is recognising that someone is a carer. For example, the 2001 census did not include drug and alcohol misuse as a caring responsibility. If the census does not recognise that that is a caring responsibility, the individual involved will almost instantaneously come across barriers. I believe that the next census will not include young carers at all. I do not know whether that has changed, as there was a petition on the issue, but I know that it was proposed that young carers would not be included at all in the next census.

We will find that out for you—that is not too rash a promise for the committee to make.

On ethnic minority carers, I come back to a theme that I mentioned earlier, which is that one has to go out and find the carers, because caring is hidden within many of those communities. We now have two part-time workers—one in Glasgow and one in Edinburgh—from the ethnic minority community who do just that. They reach out and try to find people who have a caring responsibility in those communities.

That is a struggle, for several reasons, among them the fact that people do not come forward and do not understand the system. We should not underestimate the complexities of the Scottish care system, for children or for adults. An illustration of that is provided by one of our prominent members in Edinburgh, who is a lecturer in material sciences at one of the universities and is a highly educated man with perfect English. If you were to listen to his story about trying to find his way through the system and unravel how he could get support for his disabled child, it would make you weep. What hope is there for someone who is not so well educated, does not have a good command of the language and comes from a very different culture?

Complexity is one issue, but there are also cultural barriers and perceived cultural barriers. There are two sides to that. One is that undoubtedly within some communities there are high expectations, particularly of women, that the caring role will be kept within the family. Perversely, social services and health workers also assume that because a person is from a certain community, they are bound to deal with the issue themselves.

There is almost a double jeopardy.

Yes, there is a double jeopardy.

My plea is for more work on such issues. We work with people with learning disabilities, but I guess that the situation is repeated for carers in many other situations. To repeat my earlier theme, we must help carers to come forward and be identified, so that we can get in place support measures that will prevent later breakdown and save the community money in the long term.

One example of good practice is in Glasgow City Council, which funds two ethnic minority care workers who work with local service providers to try to ensure that they recruit people from ethnic minority communities for the services. It is a lot easier for people to access services, such as respite at home, if the person who provides the service is from the same community, in part because of language and culture issues. Simple measures, such as having somebody of the same sex, can make it a lot easier for carers from those communities to access services.

I have visited Hollybush House in Ayrshire. Have any of you come across issues and new challenges for people who look after veterans who have come home with post-traumatic stress disorder? Is there a new role for carers as a result? Is that an issue in North Lanarkshire?

No.

So nobody has come across that issue—that is interesting. Is that a potentially hidden carer role?

That is potentially an issue that we will have to look into, but it has not come to the surface at this time.

That is interesting, because there were a lot of people from the Lanarkshire area in respite care in Hollybush House—people get three weeks of respite care there. I wondered whether the issue had surfaced, given that more and more veterans are coming home with that condition.

Perhaps the carers feel that they get support at Hollybush and so do not access support nearer home—I do not know. We will look into the issue, because it would be interesting to find out about it.

There may be an issue.

Marlyn Glen has a question, after which, in the remaining time, I will give everyone an opportunity to talk about any issues that we have not covered. Have a think about whether there is something specific that you would like the committee to do and tell us. Now is your chance to put that on the record. I cannot guarantee that we will do it, but we would certainly be interested to hear about it.

The witnesses could answer this question in summing up. Are you asking for new legislation from the Scottish Parliament? If you are not sure, will you find out from your organisations whether they think there is a need for that?

I have a basic question about an issue that has always bothered me and which shows my inexperience in some matters. I mentioned the benefits trap and how much money adult carers can get. How much financial support do young carers get?

I have a question for Kathleen Bryson about kinship carers. Have grandmothers, or others that she works with, been put under pressure by social work departments to say that they are the guardians, because then they receive no money?

For a good percentage of the grandparents with whom we are involved and who look after their grandchildren, because they have an agreement with the child's parent, there is no social work involvement. Some of them would love to access social work services, but because there is not a desperate need and the child is not in danger any more, social work does not get involved. Therefore, as far as I am aware, they cannot access the kinship care money.

That is the nub of the issue. I have heard that, when grandparents go to social work to access any form of money, they can be told to put themselves forward as guardians, but people who become guardians do not get any money. There is a catch-22 situation. I seek clarification on that.

Yes, that is the case for most of the families that we deal with. Some of them want social work involvement and some do not because they are scared that if they get it, the kids will be taken into care. For many families, it is a catch-22 situation.

Young carers receive no financial benefit until they are 16, when they can apply for the carers allowance if they are not in education or a full-time job.

Is that a reserved issue dealt with by Westminster?

Yes.

But we still have to be aware of it.

It goes back to service provision for 18 to 25-year-old carers. Westminster is trying to provide a more fluid transition of access to support as young carers become adult carers. There is a massive provision gap.

We need to monitor the transition from primary to secondary school to see whether we can continue to provide support into adulthood.

Has everyone had their say now?

I have a general point about accessing services that touches on a question that was asked. Access to services can vary depending on a person's condition. We are caring for my father just now and, over the past few years, I have found the services disappointing and the experience frustrating—indeed, my experience reflects that of many of the people we support. My father has now been diagnosed with cancer and the difference in the level of support and the sensitivity with which the situation is handled is incredible. We are really pleased with the support that he is now getting. That shows that there are really positive messages about the care that is out there and that it can be done, but we need to learn lessons from some of the more intense types of support. That level of support should be the norm instead of waiting until people are in real difficulty before we step in.

I now feel that my father is getting good support and so are we. The information that we get is so much better than it was when my father suffered from general ailments and was hospitalised but discharge was not such a big issue. Since he has been diagnosed with cancer, the palliative care is very good. There is much to learn from such provision.

I have a brief example that shows the other side of the coin. We run a prison project that supports families of prisoners in HMP Kilmarnock. Committee members may not realise that there are about 600 prisoners in HMP Kilmarnock, 85 per cent of whom are in for committing crimes to fund their addiction. Many of the families who have had to take over the care of children or grandchildren get absolutely no financial support. There is an invisible crowd of people out there who could do with a bit of support from the Government.

Now is the moment for people to raise anything that has not been highlighted or to tell the committee something specific that they would like it to do. In time-honoured tradition, we will go round the table—in the opposite direction, just to throw you all off.

I thank the committee very much for inviting me today and allowing me to have my say about young carers, because I do so enjoy having my say about young carers. I believe that a lot is yet to be done on equal opportunities for young carers and I would like something to be done in the immediate future.

My point is about carers allowance, which is a Westminster issue. When a carer reaches 60, they lose their carers allowance. The person they care for does not disappear in a puff of smoke at that point, but what little money the carer receives does. The fact that the carer has not worked for many years depletes the money that they could have put towards a pension fund. Therefore, they face further poverty as they reach old age because they have no pension and no stamps with which to back themselves up having given up work to carry out their caring role.

Although that is not within our remit—

I know that.

There is nothing to stop us asking the Scottish Government to make representations to Westminster on those specific points.

Thank you.

I would love it if you could do something to help kinship carers understand how to access the money. That information should be made public, and it should tell carers what to do and where to go. Alternatively, the information could be given to the agencies that are involved with families, especially those who are affected by drug and alcohol misuse.

I have mentioned this before, but there should be a duty on authorities to implement assessments and not just a duty to carry them out. Authorities should be expected to identify carers and to offer over-65s a follow-up assessment every two to three years to ensure that there is proper planning for the carer and the person whom they care for.

That suggestion is perhaps related to Elizabeth Seaton's idea of an MOT, which she wants to happen annually.

I am encouraged by the fact that we are having this type of discussion. I have been with Crossroads Caring Scotland for 10 years and the amount of contact that I have had with government has increased substantially over the past four years.

Simply having this dialogue here is encouraging. The care 21 report said many good things, and everyone is beginning to speak the same language, but the big concern is that resources are required, and they are needed sooner rather than later. We are talking about time bombs and demographic changes, so although we are saying the right things and identifying potential weaknesses, we are not ready to fund it all yet, which is a worry. If we do not have the infrastructure to support carers in the longer term, we could face real difficulties.

I concur with that. Marlyn Glen talked about new legislation, but I would rather have proper implementation of existing policy and legislation. On Norman Dunning's reference to assessment, I would like guidance on good practice to improve assessment procedures for carers and provide more resources for respite, including the 10,000 respite weeks that local authorities must provide. There should be good monitoring and evaluation of those who are involved. We should research flexible working to ascertain which carers take it up, whether there are barriers to accessing it and whether anything can be done to support employers or make them aware of their existing responsibilities.

I reiterate what I said about practice guidance. When the Community Care and Health (Scotland) Act 2002 was implemented, it came with policy guidance but not practice guidance, which was never developed. All the guidance goes back to the 1995 act; it is out of date and the information on how an assessment should be carried out and what it should include has not caught up with the times.

On the relationship with work, the Government indicated in the care 21 report that it was not sure whether employment was part of the Scottish Government's remit. My opinion is that it would be good for the Government to promote the need to support carers in the workplace, irrespective whether there is legislative provision for it.

Finally, I want to highlight something from Northern Ireland. Section 75(1) of the Northern Ireland Act 1998 states that "public authorities" should

"promote equality of opportunity … between persons with dependants and persons without."

That definition includes carers, so I wondered whether the Scottish Parliament could consider such promotion of equal opportunity for carers. I can send the committee more information about that.

That would be helpful. We have considered the possibility of legislation for carers, but we perhaps do not make enough of existing legislation, as Claire Cairns said. We could do more to ensure that it does what was intended.

I thank all the participants for their attendance. I know that the committee feels that the session has been worth while. We use the round-table format so that we can go in different directions and pick up and expand on various issues as they arise. We asked you for examples, and there was no shortage of tangible issues that we can run with. Some of them are problematic and need further consideration; others are examples of good practice that we would want to promote.

I hope that we have provided a platform for highlighting and raising awareness of what is a real issue of equal opportunities: fairness, which, by and large, unpaid carers in Scotland today clearly do not get. Thank you again for your contributions. I hope that you, too, found the session worth while.

Meeting suspended.

On resuming—