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I must make some progress, as Back Benchers will want to make their own contributions. I was talking about the changes taking place in our society, to which we have a duty to respond. The demographic realities
are that people are living longer, which will continue, and that disabled people want not just longer lives but full lives. There have been medical advances too. Another fact, which is often missed, is that people are demanding—not being forced—to remain in their own homes rather than going into institutions. The implication of that for the role of carers is profound, and will become even more profound.
We must also recognise that carers are people first, with their own needs, aspirations and fears. They need help with caring, but—I do not think that the hon. Member for South-West Surrey mentioned this once—they want a life as well, and public policy should reflect that.
I have already referred to the tremendous progress made in recent years. I am not suggesting that the Conservative Government did nothing, but we were presented with a pretty blank piece of paper in terms of the commitment that Government were willing to make to carers historically. We introduced the 1999 strategy—the Prime Minister’s strategy—we awarded an annual carers grant to every local authority, and we produced the Carers and Disabled Children Act 2000. I referred earlier to the Carers (Equal Opportunities) Act and the right to request flexible working.
Pension credit legislation is going through Parliament, and a tremendous package of support—which is overdue—was announced several weeks ago, involving a partnership between the Treasury, the Department for Education and Skills and my Department. That will significantly enhance the support available to disabled children and their families in every community. There will be many more short breaks and much more respite care, along with lead professionals, and a focus on a transition that is often difficult—the cliff edge between being a child or a young person and becoming an adult.
We are now about to make a reality of our announcement of a couple of months ago of a new deal for carers. The national telephone helpline will mean that carers have easy, ready access to information focused on their needs. Carers tell us that they want to be able to make a call or to log on to the web and to know that they will end up in the right place and have their needs met.
The Minister of State, Department of Health (Ms Rosie Winterton): Signposted.
Mr. Lewis: Carers want to be signposted in an appropriate way, as my right hon. Friend says.
We are developing the expert carers programme, so that carers in every community have the training and support to develop the skills and confidence not only to be able to look after the person they are caring for, but to engage on a far more equal footing with professionals. There is also the emergency respite care fund. Carers themselves have told us that one of the greatest difficulties they face is a sudden caring breakdown, a sudden difficulty with the person they are looking after and a sudden need for emergency support. We will make further announcements later this week about the consultation. Over time, we want to bring about a system that is on their side, and which gives carers a life of their own. Issues have to be addressed.
I was interested by the curious contribution of the hon. Member for South-West Surrey on the question of information sharing, because he said that information could be shared, but only within a Department. But the first thing that carers say to us is, “We want a holistic, cross-Government approach. Each one of us is a person, not a series of compartments as represented by Government or local delivery mechanisms.” To suggest that the Conservative party is happy for electronic data to be shared, but only if it is within a Department, misses the point and fails to listen to what carers tell us about their priorities.
I turn to the question of social care, which is massively important to the quality of carers' lives. We need a new consensus for a new settlement. We must recognise that society is changing so rapidly that we need a new balance between the state and the responsibilities of families and individuals. That settlement must be fair but it must also be sustainable. We must be clear that resources will always be finite. The question is: what, on a long-term basis, is both just and sustainable in terms of funding a social care system that is fit for purpose to meet the challenges of demographic change?
In the context of changing the social care system, we also need to transfer a lot of power and control from organisations to those who use services and to their families through individual budgets, direct payments, person-centred planning and self-directed support. We need to move away from a system in which professionals determine the life chances of individuals, and transfer a maximum amount of power and control to those who use services, and to their families.
I pay tribute to the Under-Secretary of State for Work and Pensions, my hon. Friend the Member for Stirling (Mrs. McGuire), who has worked alongside me on that agenda in making tremendous progress for disabled people in our society. She has not only served as the Minister with responsibility for disabled people but has been the champion of disabled people across Government, and she has continued to make the point that every Department must fulfil its responsibility.
I now move on to the national health service. It seems that we have to do more in terms of access to general practitioners. They are often the gatekeepers. for carers, they are the trusted professionals. We need to ensure that in future GPs give far greater priority to identifying carers and ensuring that they are referred to the right service and to the place where they will have their needs met.
As the hon. Member for South-West Surrey said, we must also acknowledge that the health of carers often deteriorates as a consequence of fulfilling caring responsibilities. That has implications for the NHS. Carers, more than most, require a truly integrated approach at local level between local government, the local national health service and the voluntary sector. We need services in local communities to be much more joined up. We need to move from a notion of partnership to one of integration, and to recognise that the prize that we now seek is not simply a synergy between the NHS and social care. In order to protect the health and well-being of carers, the NHS, all the services local government commissions and provides, and the voluntary sector need to harness their resources efficiently and in a joined-up way.
Employment is another issue. Some carers might want to combine their caring responsibilities with having a job, and others who have been out of the labour market for a long period might want to have the chance to re-enter it. We must look into what support we might give them. Education and training are important factors.
It is right that the system draws a distinction between adult services and children’s services, but we need to ensure that that does not lead to young carers being failed. There is a danger of that happening. We know from evidence and research—and from some powerful and sad recent stories—that there are many hidden cases of children and young people fulfilling caring responsibilities for a parent. A child or young person should not do that alone without having a lot of support. That affects their education, and their chance to do the things that children and young people ought to do. Society and Government need to take a fresh look at the support that we offer young carers, not only through our Department but in the education system.
The hon. Member for South-West Surrey asked about the benefit system. I agree that we need to examine benefits, taxation and pensions in an integrated way. The key issue here is the financial impact of caring on the carer and their family. In no circumstances should a carer have to live in poverty as a consequence of having made the choice to care.
In an Adjournment debate last week, my hon. Friend the Member for Aberavon (Dr. Francis), who has now left the Chamber, raised the issues of leisure, friendships and social relationships. Many carers tell us that they suffer isolation and loneliness. Therefore, it is crucial to ensure that carers have access to leisure opportunities—to a social life, to friendships and to informal networks.
The reform of public services is not only about addressing leadership, management, targets and organisational changes. We must not forget that pressure from those who use services and who fight and campaign for them is also important. That is why having a voice, information and advocacy are crucial. We must ensure not only that we change public services by reforming systems, but that we transfer a lot more power and opportunity to influence public services at the local level to those who use them, and to their families.
The support we give to carers will define the character of our country as we face up to future challenges. We must care for them and be compassionate, and we must empower and support them so that they can maximise the quality of life of the loved one or friend whom they are caring for. Carers are usually better placed than the state to offer appropriate care, but they need the state to be on their side. They need a state that is active and enshrines rights in law, that provides accessible and quality information, advocacy and support, that personalises public services so that respect and dignity are at their heart, and that ensures that choosing to care does not mean giving up one’s own life.
As a result of demographic change, medical advances and changing expectations, the needs of carers will become more, not less, important in the future. Caring will ask new questions of every family and community, of the state and the voluntary sector, of the husband and the wife, and of the son and the daughter. This Government will provide leadership and
ensure that carers are at the heart of a new contract with the people, so that the system is on their side and they can have a life of their own. To make that aspiration a reality is the prize, and it must become a shared mission.
9.9 pm
Sandra Gidley (Romsey) (LD): I welcome the chance to debate these issues today, at the beginning of carers week. Although there has been a little bit of acrimony, it is fairly obvious from the speeches of the Minister and of the hon. Member for South-West Surrey (Mr. Hunt) that there is a genuine will to do something, so I do not intend to make many party political points this evening.
At the beginning of carers week, we are obviously celebrating the contribution that carers make to society. The Carers UK website published today the results of a survey that it carried out on behalf of 3,500 carers, who are probably fairly representative of the 6 million out there. The results highlighted the negative impact that the role of carer can have on a carer’s relationship with their partner. Some 66 per cent. said that their relationship had suffered, and 60 per cent. said that they had little quality time. Interestingly, when they did have such time, 21 per cent. used it to catch up on sleep, so it is clear that other things suffer, too. Importantly, nearly two thirds—63 per cent.—felt a loss of identity.
For many people, caring is a long-term commitment, so it is worrying to note that three quarters of carers have not had a regular break from caring in the previous 12 months, and that 38 per cent. have not had a single day off in the last 12 months. I will be kind and concede that the Government have put £25 million toward respite care, which was mentioned in an earlier intervention. That is of course very welcome, but it is targeted at emergency respite care only. We have to look at ways of freeing up money to make sure that people have regular access to respite. As constituency MPs, we have all probably had people coming to see us saying, “I could cope if only I knew that I was going to get regular time off at some point in the future.” Services are so stretched that even if time off is booked—of course, booking time off has an impact on people’s lives because they cannot therefore be spontaneous; they have to sort out their social lives weeks, if not months, ahead—it is often cancelled at the last moment or changed because an emergency has arisen involving someone with a greater need. Carers realise that there are people with greater needs, but it is difficult if we cannot honour even small commitments.
In a trial on the Isle of Wight, carers received regular respite every few months. Respite care was always with the same nursing home, so the staff got to know the individual concerned and the carer got to know the people in whose care their loved one was being entrusted. The system seemed to work very well. If people feel that they are being treated as human beings and can have a regular break, they can carry on caring for longer. Some work needs to be done on the economics—perhaps as part of the strategy—because we do not really know the answers at the moment. That system seems like a good thing, but perhaps some pilots are called for properly to assess the long-term benefit.
The survey to which I referred also looked at carers’ financial situation. The Minister rightly made the point that nobody should be financially worse off because they have caring responsibilities, but the reality is that 67 per cent. said that they were, and 28 per cent. said that they felt unable to support the family properly. One in five carers is forced to give up work, but many of them are missing out on the benefits, pensions and practical support that is available. Here, there is something of a double whammy. As has been pointed out, caring is a full-time occupation. Many people who suddenly acquire these responsibilities do not also have the time or energy to access the very complex benefits system and to work out what they are entitled to. As has also been pointed out, even if they did have the time, the system is complex, inconsistent and bureaucratic.
According to estimates, carers actually save the economy £57 billion each year, but carer’s allowance is still very low at £48.65 a week. Rates of unclaimed benefit also remain high. Although, in theory, part of the problem is being tackled, in practice, carers are not getting the little to which they are entitled. I agree that there must be a wholesale review of the carers benefit system, including the provision that is available to retired carers. That is another anomaly that must be reviewed, and I am sure that during the review, it will be brought to the Minister’s attention time and again.
The anomaly for young carers is that they cannot claim benefits if they take part in education for 21 hours a week or more. By young carers, I mean young adults who may wish to take part in some education. The anomaly is a disincentive to young carers, because they do not have the resources to carry on furthering their education or training, and if they do not take the opportunity when most of their peers do so, they could be locked into a lifetime of social exclusion.
Annette Brooke (Mid-Dorset and North Poole) (LD): Is my hon. Friend concerned about what might happen to young carers when the school leaving age is raised to 18, and about whether the Government will give that every consideration in the review?
Sandra Gidley: My hon. Friend makes a very good point. She has a long commitment to the subject of young carers, and I hope that her point will be addressed by the Minister when she winds up, because it is valid.
The issue is about joined-up government. There are Ministers present from two different Departments, but it has already been pointed out that the Department for Education and Skills has a role to play, and I suggest that the Department for Communities and Local Government has a role, too.
Mark Williams (Ceredigion) (LD): One of my hon. Friends talked about young adults and the challenges facing them as carers. Is my hon. Friend aware of primary school children who have been undertaking caring roles? Children as young as eight years old—at arguably the most formative time in their education—are taking on caring roles out of necessity. Does she agree that we must urgently consider models to support those children?
Sandra Gidley: My hon. Friend makes an excellent point, and I shall return briefly to that subject later in my comments.
Older carers often have to change jobs. The survey that I mentioned said that 57 per cent. felt less able to focus on a career, and respondents also quoted reduced promotion prospects and the fact that they were unable to take up training opportunities. Some 40 per cent. found it difficult to get back on the job ladder when returning to work. When asked how their working life could be made easier, one fifth felt that they needed greater support from their boss, and 18 per cent. more understanding from colleagues. Again, access to carers advice came up during that part of the survey.
There is a need to ensure that the way in which companies structure their training programmes does not discriminate against carers. Often, companies’ work practices are assessed for gender, and parental provision is also taken care of. It is also important to note that 80 per cent. of carers are of working age, and 3 million already combine work and care. Advice needs to be made available to them so that they can perhaps change their career slightly, or learn how to suggest alternative working practices to their employers. Of those people who were not working because of their caring responsibilities, one third said that they would return if the right alternative care and flexible support were available.
The peak age for caring is 45 to 64 years old, and the cost of replacing the expertise of a worker of that age is immense. Flexible working is one way forward, and I recognise the Government’s efforts in that direction, but many companies still enshrine the old ways of working, and I do not think that quite enough has been done to encourage companies regarding the way forward.
At a recent meeting with BT, I learned that 75 per cent. of its work force were flexible workers. The company decided that it would be resented if flexible working was available only to parents or carers, so the same provision was offered to everybody. As a result, BT has identified average productivity gains of 21 per cent., cost savings, increased customer satisfaction, increased creativity and energy and—no surprise—a decrease in sick leave. To introduce a green theme to the debate, BT calculated that it had saved 12 million litres of fuel. Flexible working is good for people and good for the environment so I hope more will be done to encourage other companies to follow those who have successfully adopted those practices.
My hon. Friend the Member for Mid-Dorset and North Poole (Annette Brooke) mentioned young carers; there are 175,000 in the UK, 13,000 of whom care for more than 50 hours a week. In 1999, the national carers strategy made a number of proposals to improve recognition and support for young carers, but unfortunately only 18 per cent. of young carers actually receive an assessment of their needs. I am sure Ministers agree that the problem urgently needs to be addressed. Sometimes, there is a family decision not to seek support, so more work needs to be done with families to reassure them that if social services are aware of the problems they will not take the children away and break up the family, as that may be a concern. Sometimes, however, lack of support is simply indicative of a failing system.
There is often poor awareness in schools. Teachers may tell a child off for not doing their homework or for being late, when the situation may have been prompted by the child’s caring responsibilities. Such an approach does not encourage school attendance.
Last week, in the debate in Westminster Hall, my hon. Friend the Member for Mid-Dorset and North Poole recommended a whole-family approach—a point echoed by the Minister in his speech. My hon. Friend welcomed more joined-up thinking between adult and children’s services, because they are all part of support for the family. The system may fall down because a parent who needs support during the night may not meet the criteria for adult social services, yet in practice there is a huge impact on the child who may have to get up every night to undertake caring responsibilities.
The Government have greatly progressed the agenda. Mention was made earlier of the carers hotline. I rang the hotline because I thought it was such a good idea—as the Minister said, people want access to advice when they actually need it—so I was a little surprised to hear a recorded message:
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