§ Motion made, and Question proposed, That the sitting be now adjourned.—[Mr. Kemp.]9.30 am
§ Mr. Gary Streeter (South-West Devon)
It is a great privilege, on carers' rights day, to raise the issue of carers in the House. I am delighted that so many colleagues are present and able to take part in this important debate. I am grateful to whatever system it is that operates behind the scenes that ensured that this important subject was chosen.
The purpose of my remarks is first to pay tribute to those many people who demonstrate such sacrificial love and care on those who need their help—often, but not always, members of their own families—and who do it day in, day out. I pay tribute also to the many organisations that, under the banner of carers' rights day, are taking steps in every locality to ensure greater awareness of the needs of carers and of the people for whom they care. It is a great privilege to take part in this debate.
It will be salutary for us to think for a moment of the scale of the issue, and of what is involved for those who, every moment of every day, are ruled by the needs of others. Some of the families to whom I have been speaking since being told that this subject had been selected for debate have humbled me by demonstrating such commitment, such dedication, to the people for whom they care.
The scale of the problem is immense. Nearly 7 million people care full time or part time for loved ones who are frail, disabled or chronically ill and who could not manage without their help. One in eight of our population is a carer, and in Devon, 69,204 people are carers. Week in, week out, many of us talk and listen to carers in our constituency surgeries, and we hear of their struggles, problems and aspirations. Although the expression is overused, the words "unsung heroes" come to mind.
There is no question that society would collapse without those carers. However, at times in the history of mankind, disabled children would have been left out on the hillsides to die. Even in modern times in Europe, such as in Ceaucescu's Romania, children with mental or physical disabilities were abandoned in awful institutions and neglected. Thank heavens that does not happen in our society—thanks largely to the work of 7 million unsung heroes.
In our country, 1.8 million people care for others for more than 20 hours a week, and nearly 1 million spend 50 hours a week or more caring for their loved ones. We know from our surgeries that many spend not 50 hours a week but 24 hours a day looking after a disabled son or daughter or an elderly parent.
This year, 301,000 people will become carers for the first time. A particularly challenging statistic is that 51,000 young carers under 18 years of age not only cope 178WH with school and the turbulence of the teenage years—those of us who are parents know all about that—but have to go home at 3.30 or 4 pm to care for parents who are disabled or challenged in some way. They require our special support. One million parents care for their disabled children. If ever a statistic demonstrated the love of parents—in many instances it is mainly that of the mother—it is that 95 per cent. of disabled children are cared for in the home, not in institutions. We have all met people who commit their lives to caring for their disabled children. Carers collectively save the state £57.4 billion per annum. I am sure that the Minister would be horrified if all the carers in the country suddenly said, "We shall not do it any longer; the state must provide the services that we have willingly been giving free for all these years." The Chancellor of the Exchequer would have a difficult day trying to find the money to do that. It could not happen.
It is a salutary fact that most carers are caring for a husband, wife or partner, son, daughter, mother or father. Although we often think that the family is under threat—it is certainly changing shape in many quarters—we must remind ourselves, today of all days, that blood is thicker than water; family does work, it is the important building block of a strong society. The statistics demonstrate the meaning and the immense value of family.
Those of us who are married said in our wedding vows, "For richer, for poorer, for better, for worse, in sickness and in health." We said it and we meant it. For many families, it is an everyday reality. We do not know in advance how our families will develop. We do not know when a child is born, or when our parents reach 50, 60 or 70, how their health will be. Some people say that that is unfair. Yes, it is unfair and there are no guarantees. However, the humbling lesson is that 7 million people have said, "Yes, it is unfair, but we will love through and provide the services anyway." It is important to recognise that.
The state could not take over these responsibilities even if it wanted to—it would not be right for it to try to supplant the natural family responsibility. However, we want the state and society to give the right kind of help. There are three distinctive layers: the family on the front line, the state, in the shape of both national and local authorities, and the wider community—charities, voluntary organisations, churches and all of us as neighbours. Each of us can play a part in helping the nation's carers.
We all have favourite examples of carers in our constituencies who have come to us for help, whether in writing or at our surgeries. I think of a man, now in his late 60s, who has been caring for his blind wife for more than 30 years. Many carers experience unrelenting pressure, day in, day out. I do not notice such things, but my wife tells me that the blind wife always looks terrific: she is well dressed—as she cannot dress herself, her husband dresses her—and they are active as a couple. They attend many events in the village, at the local church and in a larger association. They are always there, always active, always playing their part. That man is a hero. Uncomplainingly, he cares for his wife in a remarkable way.
In recent days, I have been talking to a family whose daughter is blind. She cannot walk, talk or eat and she is partially deaf. She always has tubes in her. The rest of 179WH her family have devoted their lives to raising Vicky in her own home. It was a surprise to me to learn that the parents' main concern is not for themselves—"How could this happen to us?"—but that their other two children should live lives that are, in their words, more normal; not bogged down by tubes or blood testing all the time. They want their children to have proper holidays, away from such pressures. All these people deserve our support. I am sure that we have all met elderly people in our constituencies who care for their disabled adult children. Their abiding fears are what will happen to, and who will look after, their sons and daughters when they get too old to help them or die. That is such a difficult subject. Care will pass to another group, and it will not stay within the family in the same way.
Carers care sacrificially, but their care is not cost free. The Princess Royal Trust for Carers carried out a survey recently, and some of its members' responses are interesting. It states:Over eight out of 10 carers said that caring had a negative impact on their own health. Almost nine out of 10 reported that they feel stress, anxiety, depression or loss of sleep, due to being a carer. Carers also saw the sheer relentlessness of caring and its effects on their mental and physical well-being as being their biggest problems.The majority of carers would like to take a break from caring. Those more likely to say they wanted a break were female, those caring for 15 hours a day or more, those caring for a son or daughter and carers aged 44 years or under. Carers need different types of help to take a break. Overall around two thirds of carers would need help with respite care, one third would need help from a sitting service and a third would need financial help, to take a break.Caring does not come without a price. The mum in the family that I spoke to over the weekend talked about being permanently tired as a result of caring for her child.
That is the scale of the issue, but what can we do about it? I pay tribute to the Government for the additional resources that they have made available in the past few years, and for their focus on the issue. It is much to be welcomed and commended. The debate is not about wagging the finger at anyone to say that they are not doing enough.
The Carers UK website contains the understatement of the century when it states thatthe benefits system is complicated".That has always been true. It is certainly true in relation to people who try to get help as carers. Some help goes directly to the disabled person, and some goes to the carer. Different rules apply for people under 18 or over retirement age. Some help comes from social services under a completely different system, and there is respite care, the new assessment system, some day-centre services and home visits from the local social services, for example. That last form of help is patchy and differs throughout the country. Sometimes it is excellent, but sometimes it is not so commendable. Much of the help is necessarily means tested. The forms seem to become longer and more complicated.
We are all concerned about the take-up of disability living allowance, invalid care allowance and related benefits, especially among those who have cared for 180WH many years. Those who have recently started to care and have had access to better information are more aware, but those who have been caring for a loved one in the home as a matter of course for 10, 15 or 20 years are less likely to be aware of the support available. What more can we do about that?
§ Mr. Oliver Heald (North-East Hertfordshire)
Does my hon. Friend agree that there are no real take-up figures for invalid care allowance? It might be useful if the Government undertook some high-quality research on the subject. I have noticed that the quarter following carers' rights day last year saw a 12.5 per cent. increase in claims for the allowance. That suggests a large unmet need.
§ Mr. Streeter
My hon. Friend makes a characteristically important point. I would not want the Government to load more accounting and reporting requirements on the system, but some forensic research would be excellent. One reason for us being here to support carers' rights day is to make more people aware of it. I have appeared in much of the local media this morning, and I hope that more people in Devon and Cornwall are now aware of their entitlements and will come forward for them.
The lack of awareness continues, despite the excellent work that some of the carers' associations are doing. In my constituency, the Ivybridge Carers Association and the Plymouth carers centre provide information, distribute leaflets and help people to access the systems. However, too many people still struggle to get the help that they desperately need. I ask the Minister what plans she might have to introduce greater simplicity and to streamline the system. I know how complicated the issue is, and I understand that there is no magic bullet or wand. What steps could be taken to increase take-up, by improving simplicity and streamlining the system?
The daughter of a family to whom I was speaking over the weekend had been having free respite care. Now that she is 18, however, the family has to start paying for that. The daughter and her needs have not changed, but suddenly the rules have changed. Maybe that is inevitable, but should it be? The family cannot find out what changed respite care will cost in their changed circumstances, and they have stopped having it. That is the last thing that we want to happen. The situation is like an elderly person not turning their fire on during the winter because they are frightened of the cost. Is there a way of ensuring that the system is simpler?
Recently, the Ivybridge Carers Association talked to me about concern over the fairer charging policies that some local authorities are introducing. My hon. Friend the Member for Wycombe (Mr. Goodman) intends to raise the issue, so I do not want to focus too much on it, except to say that people have genuine concerns that fairer charging policies are leading to increased charges for many people. We do not want to see that.
Is there a plan to simplify and streamline? Are there plans for a greater nationwide awareness programme? Is there anything more that the Government can do to make more carers aware of their entitlement? I think that even the term "carers" leads to some confusion, because some of the full-time professionals who work in domiciliary care and similar roles are also described as 181WH carers. People may hear the word "carers" and think, "Well, that doesn't apply to me—that's fully paid people." The Government are skilled at the right use of language to get their point across. Is there scope for better language?
It is important that the Government do what they can, but also that there is a wider response to the problem. I feel strongly about a more holistic approach among employers. Best-practice employers are getting better at family friendly policies on such issues as their employees' having to collect children from school, and are showing a greater awareness of school holidays and of the needs that a family have when a child is born and children are at school. However, there is less awareness of the stresses and strains on families caring for a disabled person or an elderly relative in the same way. I was quite taken with the words of the chief executive of Carers UK, Diana Whitworth, on that organisation's website. It reads:Four million people in the UK juggle work and care and nearly three million of these carers look after an older relative. Our ageing population means more and more of us will end up caring for an older relative—and many of tomorrow's parents will also have 'elder care' responsibilities.A sea change in employers' attitudes is needed. Tomorrow's workforce will include a higher proportion of carers and flexible working patterns will have to become the norm rather than the exception.
I am not sure whether this is an unusual thing for a Conservative to say, but I genuinely believe that employers—particularly larger employers—should follow best practice, in terms of flexible working arrangements. It is not all about the bottom line. We should be building a sustainable country, and family friendly policies are an important part of that. I hope that we can make some progress in that area.
§ Mr. John Randall (Uxbridge)
My hon. Friend is raising some important points. Perhaps I should speak as an employer. The advantage of a small family business is that one is aware of individual needs, although many employees are frightened to come forward to say what caring needs there are at home because they feel that that might be difficult. We should encourage employees to tell employers what the problems are, and ensure that employers do not discriminate against people who care for others.
§ Mr. Streeter
I am grateful to my hon. Friend for raising that important point, and debates such as this can make us aware of such issues. Central and local government are massive employers and can lead by example. It is matter of attitude, not simply of new rules and regulations. As my hon. Friend says, it is about encouraging employees to step forward and employers understanding the issues.
My next point is my most important. I hope that help and support can be tailored to particular family situations wherever possible, although I know that that is difficult. I have spoken to several charities that are active on this issue, and I asked them which point it was most important to make in this debate. In different ways, they all said the same thing: we should not make assumptions about the sort of help that carers and families need. Wherever possible, our help should be flexible enough to meet particular needs.
182WH A few days ago, I learned that this issue had been selected for debate and I felt strongly that respite care was the most important issue. Being the sort of person I am, I would want to get away as often as possible from the pressures that we are discussing. Interestingly, however, the Princess Royal Trust for Carers survey, from which I read earlier, found thatfour out of ten carers … would not like to take a break. Given the emphasis on carers' breaks as the major new service for carers this finding deserves some attention from policy makers and perhaps more research on the reasons for this. These carers might benefit from other types of support. Some local authorities have used the Carers Grant to fund different types of support for carers, including mobile phones, IT equipment and other equipment needed at home.I am all for that. It is important that we listen to individual families and carers so that our support systems are sufficiently flexible to give them the support that they need. Earlier, I mentioned a couple who were caring for their daughter. Their main concern was not for themselves but for their other two children, whom they wanted to have a break from the tubes and blood tests, as they put it.
It is important that central and local government take that principle on board, which is why I was interested in the consultation that took place earlier this year on the respite voucher scheme. Although the scheme comes back to respite care, which is still important for many people, I liked the principle behind it. It would empower people to make their own choices by giving them a voucher that they could take wherever they wanted. I am in favour of applying that principle in other areas, such as education and health, because the money should follow the consumer or the patient. It was the Government who introduced this interesting scheme. I know that the consultation ended in June, but I want to know what has happened to it since. Has it become lost in the mists of Whitehall or is it about to emerge to delight us all over the next few weeks? It could make a real difference by ensuring that help is tailor-made to families' and carers' needs. I hope that it can be introduced.
Local authorities have ring-fenced money for respite care, a move that I welcome, but it is not necessary for them to provide the care themselves because there are some excellent charities that can make the provision. On the Winged Fellowship Trust website, I read about some of the excellent holidays that the trust provides for families with disabled children. They are the sort of holidays that I would like the family in Ivybridge to have access to, and the voucher scheme might facilitate that.
It is important that there is much more awareness of carers' needs, of the daily pressures on them and of the immense love and care that they give. There is a need for greater simplicity in the benefits system, and all Governments have tried to simplify it, but it is extremely difficult to do so. Does the Minister have anything new to tell us about that?
My main point, however, is that we should try to give these unsung heroes the help that they want and need, without assuming that we know what it is. 183WH The message should also ring out loud and clear from this debate, from all corners of the House and all parts of the United Kingdom: every carer—particularly on carers' rights day—we salute you.
§ Andrew Selous (South-West Bedfordshire)
It is a privilege to follow my hon. Friend the Member for South-West Devon (Mr. Streeter) in this debate. I, too, am pleased to be able to contribute to the debate on carers' rights day.
We rightly salute the 1 million people who work for the national health service and for social services departments. However, as my hon. Friend said, 1 million people care for loved ones and family members for more than 50 hours a week—many of them for 24 hours a day. A further 1.8 million people care for loved ones for more than 20 hours a week. There are 7 million carers in this country.
We need to remember that carers are not a group parcelled away separately in society; they are not in a place that those of us without such responsibilities are lucky enough to have nothing to do with. We are all potential carers, and most of us will be carers at some time. Seven out of 10 women and six out of 10 men will be carers at some time. The subject affects us all, whether for short, intense periods or for long periods. We heard the moving story of the gentleman in my hon. Friend's constituency who has cared for his wife for 30 years or so.
I am deeply alarmed by a projection that I have seen that by 2037 we shall face a shortfall of 2.1 million carers. The people who need care will suffer if they cannot get it from close members of their family. I am also concerned about the extra demand that will be placed on social services departments.
My hon. Friend the Member for South-West Devon mentioned the tremendous importance of strong families. I have raised that theme before, and I shall continue to do so as long as I am a Member of Parliament. Sadly, we are the divorce capital of Europe. More marriages—40 per cent. of them—break down in this country than in any other country in Europe. Obviously, when relationships fall apart, the onus of caring for a partner, husband, wife or other family members can similarly be broken down.
That is one of many aspects of public policy of which the Government should be aware. They should examine the impact of family breakdown on people who need to be cared for. I hope that that argument will be fed back to the groups within the Government who study such issues cross-departmentally.
It is easy to talk about statistics such as the 7 million carers and the 1 million people caring for more than 50 hours a week. However, every carer is in unique circumstances, dealing with their own stresses, including isolation, exclusion from the community and, not least, severe financial demands. I welcome the fact that since October 2002 people of 65 or over who become carers for the first time have been able to claim benefits. I am proud that my party called for that from December 1999. However, to give credit where it is due, the Government introduced the measure.
184WH Invalid care allowance, which, from next April, will be renamed carers allowance, can be claimed only if the cared-for person is in receipt of attendance allowance or disability living allowance. Yet more than half the people entitled to those benefits do not claim them. Take-up is an important issue. I know that take-up throughout the benefit system is a matter of concern to the Minister. As the Minister will know from previous debates on the minimum income guarantee and other benefits, the issue exercises social security Ministers in relation to a wide range of benefits. We certainly need to concentrate on increasing the take-up of attendance allowance and disability living allowance.
This morning I spoke to a representative from Carers UK who told me that many people find benefit application forms the equivalent of wading through a small novel. I make a plea to the Government to make applying for disability living allowance, in particular, simpler, and to advertise the availability of the benefit more widely so that more people know about it. That will enable carers to claim those benefits to which they are entitled, including the newly named carers allowance from next year and the premium on income support.
Since I became a Member of Parliament, several constituents have come to see me about claiming disabled facilities grants to extend or change their homes so that they can care for a sick or disabled family member. That is an excellent scheme, which enables families to provide care at home for members of their family who need it. An extension, a lift, a downstairs bathroom, or wider corridors can transform a family's ability to care for someone in their own home. I know that in my constituency, South Bedfordshire district council has a very limited pot of funds for that purpose so, sadly, it turns down many applications for grants, severely restricting the plans of those who apply for them. Of course, the system is properly controlled. The council acts on the advice of the professionals involved, such as occupational therapists, to ensure that appropriate extensions are put in place and that families do not try to take advantage of the scheme.
I am aware that certain local authorities in the eastern region seem to have money left in their budgets at the moment. The East of England Development Agency seems to have lots of money, which it is looking to spend on various things by the end of the year. I am also aware of the Government's plans for regional assemblies. I put in a plea that the Government should move some of that money to boost the amount that local authorities have available for much-needed disabled facilities grants. Those grants can be lifesavers and they encourage independence and care within families—exactly the things that we should support.
Last week, the Second Reading of the Community Care (Delayed Discharges) Bill took place. That Bill sets out procedures that will apply to people leaving hospital and will impose fines on local authorities that do not provide people discharged from hospital with somewhere to go within three days of their discharge. Carers UK is very concerned about that and believes that the Bill could be bad news for carers. Carers UK has conducted a substantial amount of research on the issue and discovered some alarming information. At present, 45 per cent.—nearly half—of carers are not consulted at all when the person for whom they care is discharged. That is very worrying. In addition, we know 185WH that a fifth of carers do not receive a copy of the discharge plan from the hospital. There has also been a big increase in the number of people readmitted to hospital within two months of discharge. Between 1999 and 2001, it rose from 19 per cent. to 45 per cent. Those figures should ring alarm bells for the Government, who should consider carefully the effect of legislation on carers. We need to give statutory backing to the guidance on discharge so that carers have the full force of the law behind them to ensure that what is in the guidance notes comes to pass, and that people are not made to go home before carers are ready to care for them properly.
We have already heard from my hon. Friend the Member for South-West Devon that some 4 million people in this country juggle work and care; some 3 million of those look after older relatives. They are a group of carers coping with particular demands and stresses as they move daily from the work to the caring environment. I pay tribute to employers such as HSBC, Lloyds TSB, British Telecom, Centrica and the national health service that have worked with Carers UK to develop carer-friendly employment practices. Credit where credit is due—they have made significant steps forward. We should encourage more employers to walk that route. It may be more difficult for very small employers to follow the same route as larger ones, but those who are able to should be encouraged to do so.
Perhaps a carer-friendly employer mark could be developed that larger employers could put on their writing paper to advertise the fact that they have made progress in developing carer-friendly practices. That would not be the heavy hand of legislation, but would encourage best practice.
People who have been caring full time and want to return to the employment market will have gaps in their employment record on their CV. I know people, including members of my family, who feel rather embarrassed about the time that they have been out of the labour market caring for others. That should not be the case. The fact that people have spent a period of time caring for someone who desperately needed it should be seen almost as a gold star on their CV.
My hon. Friend the Member for South-West Devon said that it was not all about the bottom line. However, people who have been through the hard times and shown that they have the duty and sense of obligation, day in day out, to look after someone in great need would make sterling employees and be particularly loyal to their employer; they should come highly commended to employers. Carers should not be embarrassed or try to tuck the fact away, but say with pride, "I cared day in day out for a sick relative, which is why I was out of the labour market. I hope you will respect the strengths that I have gained from that experience."
Many employers are taking steps to introduce good child care facilities. I salute and commend those excellent, much-needed steps, but as my hon. Friend said there is less progress in providing facilities for those who care for older relatives. We know that employees who care for older people are reticent about making their employers aware of their needs. We should encourage them to come forward, and encourage employers to take a responsive and sensitive approach.
186WH I welcome the fact that those who have become carers in the past year seem to be more aware of the benefits, respite care and assessments to which they are entitled. Research conducted by the Princess Royal Trust for Carers and other organisations has shown that people who have been caring for many years are less aware of their rights and entitlements and the extra help that they can receive than those who have recently become carers.
In some parts of the country, GPs register their patients' carers. We need to extend that excellent scheme. I do not want to load GPs with extra administration—they should receive specific funds to help them cope, although the requirement would not be that onerous—but if we could extend the scheme nationally, for the first time we would have a register of the 7 million carers about whom we have been talking this morning.
As far as I am aware, there is no register of carers. If that information were available, it could be passed on to the Department for Work and Pensions, which would then know who was entitled to the new carers allowance and the income support premium. Local authorities would be able to make carers aware of respite care schemes and the assessments to which they were entitled. Such a scheme could make a big difference, and I commend it to the Minister. Perhaps she will be kind enough to give me her initial response in her winding-up speech.
Some information is available to carers. Carers UK does some excellent work, which includes running Carers Line on 0808 808 7777. It is available from 10 am to midday and 2 pm until 4 pm every Monday to Friday. It is worth putting that number on the record because if people read the record of the debate they may be encouraged to ring Carers Line to find out about their entitlement.
I should also like to commend my county council in Bedfordshire, which has been running a countywide short breaks bureau and helpline for two years through the Bedfordshire Rural Communities Charity. People can ring a freephone number to get vouchers to provide short-term respite care to enable them to go to the shops, visit a friend or take a break. The helpline has been running successfully for two years, and I know from constituents who have come to see me in my surgeries that it is greatly appreciated. Indeed, many people have asked me whether it would be possible to extend the scheme.
One of my constituents, Mrs. Maureen Fuller, has given me permission to mention her case. I spoke to her yesterday, and I have seen her on a number of occasions since my election to Parliament. Mrs. Fuller cares for her daughter Julie, who has learning difficulties and has been in a wheelchair for many years. Mrs. Fuller is Julie's sole carer, and she has raised a number of particular issues.
Mrs. Fuller lives in Leighton Buzzard, which was once described to me as being about eight miles from everywhere, and there are no facilities in the town where her daughter can be cared for on a daily basis. Eight miles may not sound very far from the nearest facilities, but Julie Fuller has great difficulty travelling in transport in her wheelchair to the nearest day centre because she gets pressure sores. There are plans, which will possibly be implemented in conjunction with 187WH Mencap, to open a small unit to care for people with learning disabilities in Leighton Buzzard. I strongly support those plans.
Respite care has been mentioned this morning. It provides people with an important and welcome break. Sometimes it is not just a break but a necessity. In the next few weeks Mrs. Fuller will go into hospital, so she will need to find somewhere—she hopes that she has done so—for her daughter Julie to stay meanwhile. She told me that when Julie has gone into respite care in the past, those caring for her have not always properly read her notes. That small practical detail is tremendously important. When carers hand over to someone, they should have confidence that the notes will be properly read so that the person's day passes as well as it possibly can.
It is important that agencies who provide carers for people such as Julie have sufficient back-up to cover for their staff when they are sick or go on holiday. For a carer, it is the most alarming and worrying thing in the world if they are expecting someone to come in at 9 o'clock every morning to wash and dress the person for whom they care and nobody turns up. Unless one has been in that situation it is impossible fully to imagine the upset, worry and concern that it causes. I flag that up on behalf of Mrs. Fuller and the many other people who no doubt have to cope with the same situation.
§ Mr. Paul Goodman (Wycombe)
I begin—how else could I?—by congratulating my hon. Friend the Member for South-West Devon (Mr. Streeter) on securing the debate and my hon. Friend the Member for South-West Bedfordshire (Andrew Selous) on making a fine speech. It is a privilege to take part in this debate, although I feel a sense of inadequacy in doing so, for two reasons. First, the most useful contribution of all was made by my hon. Friend the Member for South-West Bedfordshire when he gave the free Carers Line number and rightly said that people who leaf through Hansard to read the debate may care to take note of it. Secondly, I feel a deeper sense of inadequacy—my hon. Friend the Member for South-West Devon mentioned this—in the face of carers who come to my surgery week in, week out and have to deal with challenges and difficulties that I for one would feel unable to cope with or to bear. I am sure that the Minister and all hon. Members who speak in the debate will have had such experiences.
That leads me to praise the work of carers of all backgrounds in my constituency who care for sick, infirm or chronically ill relatives or friends. In my year or so as the Member of Parliament for Wycombe, I have often been struck by the fact that many of these carers would be unable to cope were it not for the network of charities, clubs, churches and faith communities that keep them going. Often, these organisations are staffed by volunteers who are recently, or not so recently, retired and are carers themselves. That should go on the record, too. I want particularly to praise the work of the South Bucks carers centre in High Wycombe, which provides information, advice and support for carers in the area.
As my hon. Friends said, carers who have been caring for the longest are often least aware of the good things that the Government are trying to do for them. I 188WH particularly draw attention to the needs of my ethnic minority constituents, whom the South Bucks carers centre makes great efforts to help. As carers in these communities may speak English as a second language, or not at all, they often have the most difficulty in getting access to the services and means of help that are provided by the state or by voluntary groups. There is a high concentration of poverty and challenges to carers among the elderly, and in particular among elderly women, who may not take up benefits to which they are entitled. Reference has been made to the carers allowance, which is due to be introduced soon.
Let us consider the take-up of some benefits: for example, of the minimum income guarantee, which carers often need and which helps them to look after the people for whom they are caring. The number of people who do not take up such benefits may be as high as 1 million. Will the Minister respond to the points raised by my hon. Friends about take-up? What do the Government intend to do for older, ethnic minority carers, who, because of the language barrier and the work that they often have to undertake in the home—looking after children—are not aware of the advice and support that they can receive?
§ Mr. Heald
Does my hon. Friend agree that the full range of ethnic minorities have this difficulty? It does not affect only one ethnic minority. Carers UK in London is launching its campaign today in Soho among the Chinese community, where there are particular problems in conveying such information to carers.
§ Mr. Goodman
There is a small Chinese community in High Wycombe and I would agree with my hon. Friend. He is absolutely right to say that the problem is not restricted to certain ethnic minorities. My hon. Friend the Member for South-West Bedfordshire and I have often made that point in our work for the Select Committee on Work and Pensions.
I could not possibly cover all the challenges faced by carers in this brief debate. However, carers in my constituency have consistently asked me to raise a point about the effect of the Government's so-called fairer charging policy, which I prefer to call the means-testing policy on carers. I was interested to learn that my hon. Friend the Member for South-West Devon has had the same point raised by carers in his constituency. Until recently, charges for home care were essentially at the discretion of local authorities. In Buckinghamshire, clients were asked to contribute an average of between £25 and £35 a week. I do not believe that I have received one complaint from my constituents about the policy that previously applied.
As the Minister will know, Government policy now obliges councils to provide home care to the very poorest people, if they did not do so before. That is obviously admirable in principle but, financial pressures being what they are, it means higher charges for those who may not be the poorest carers, but who are often in challenged circumstances. Such carers feel that they are being penalised for saving, being thrifty and exercising prudence. The extra weight of the charges may make them feel that they cannot afford the consequences of the Government's fairer charging, or, as I prefer to call it, means-testing policy. For example, Mrs Hackshaw in High Wycombe asks me to urge 189WHthe Government to review their thinking on the question of their 'Fair Charging for Home Care' policy.She writes:My husband suffered a severe stroke in January 1998, since when he has had to have constant home care for which I already pay what I consider to be a fair charge.My husband and I are both aged 74, and worked from the age of 16 to 65 without any unemployment or benefits of any kind. We were careful with our income, bought a house, raised two children, one of which we helped through university, and managed to save a small amount for our retirement. Now we are being penalised for being prudent which is grossly unfair.
I have a letter from Diann and Patrick Douneen of Marlow, who make a point about the complexity and difficulty of the forms. They say of their parents, who cannot understand the forms:They are a proud and independent generation, many of whom have fought for this country, but due to life's circumstances are not always able to pay for their needs as they become house bound and frail.Mrs. Geers of Hughenden Valley, near High Wycombe, plays a part in caring for her 92-year-old mother-in-law. She writes:She is often confused, is very unsteady after suffering a stroke and needs help with washing and dressing, but the home care enables her to retain a measure of independence in her own home, which she values. She has always been very careful not to waste her money, but as a result of her thrift she is likely to have to pay around £200 a week from now onwards".She continues:It seems to me scandalous that she will be required to pay possibly 10 times as much for these vital services—no other sector of the community would tolerate such a massive increase at one fell swoop in charges of any sort, but those requiring home care are probably the most vulnerable group in our society, and least able to express their plight.
It is hard for me to overestimate the anger and distress of many of my constituents at the imposition of this fairer charging or, as I prefer to call it, means-testing policy on carers in Buckinghamshire. As the local government settlement is due on Thursday, I would be grateful if the Minister were to indicate what the Government might be able to do to relieve these difficulties. I do not want to make points in a partisan spirit, but these are the concerns of my constituents, and it is fair to voice them.
I was interested when my hon. Friend the Member for South-West Bedfordshire drew attention to the additional burden that is likely to be placed on carers in future years, and their declining numbers. I am sure he would agree that one of the main drivers of that potential loss of carers is the breakdown of family structure in Britain. Rightly, he has consistently urged the Government to find ways of keeping people together. He has asked the Government—as have I—to take up the Prime Minister on something that he said in 1998—that marriage is the most reliable means of keeping two people together. If the Government did a little more, and I believe they could do more, to encourage people to stay together and to encourage marriage, many of the burdens placed on carers might be relieved a little. I know the challenges for the Government are great, but I hope that the Minister will respond to these points.
§ Mr. Paul Burstow (Sutton and Cheam)
I add my congratulations to the hon. Member for South-West Devon (Mr. Streeter) on his good fortune in securing a timely debate on an important subject. We have heard some detailed speeches about carers' concerns. I shall briefly pick up on a few issues and illustrate them through experiences in my constituency. We heard the hon. Gentleman set out the statistics that underpin the debate. It is worth stressing that the bulk of care is provided by informal carers and not the state. Often these carers are family members, but there are others, as we have heard.
The hon. Gentleman documented clearly the impact that that role can have on a person's health, wealth and well-being over time. It does take its toll. It is right to stress that in developing services for carers, as well as those for whom they are caring, we should ensure that they are not designed on a single template or based on a one-size-fits-all approach. We must ensure that they meet the needs of the individual.
Today, however, especially because the Minister is responsible for the benefits system, I shall raise some issues relating to the way in which that system sometimes gets in the way of, or certainly does not assist, carers and those for whom they are caring. The hon. Gentleman referred to the Carers UK website describing the system as complex. Sometimes it is not only complex but inaccessible, and access to benefits is an important issue for many carers. Research by Carers UK has revealed the financial hardship endured by carers. Eight out of 10 said that, on becoming a carer, they became financially worse off.
A case from my constituency highlights how the benefits system can let carers down. A daughter returned to her parents' home to care for them. The mother had suffered a stroke and required constant care day and night. The father was about to go into hospital for an operation. Both had clear and demonstrable care needs. The daughter took on the caring role. She applied for invalid care allowance, which is to become the carer's allowance, but she was turned down on the ground that she was fit for work. She had an interview at the local Benefits Agency office, where she explained her circumstances. However, instead of listening and offering help and suggestions, the official pressured her into applying for jobseekers allowance.
§ The Parliamentary Under-Secretary of State for Work and Pensions (Maria Eagle)
On what date was that?
§ Mr. Burstow
It was in the past month, so I hope that the Minister can pick up on the case when she responds to the debate. As I said, the daughter was asked to apply for the JSA and eventually she gave in and did so. It would be helpful if the Minister would give us extra information. I shall explain why in a moment. The daughter made it clear on the application form that she was available for work between 11 pm and 5 am—while her mother was asleep. The Benefits Agency official saw that that was set out on the form in black and white, and my constituent has been monitored over the past few weeks on that basis.
The case came to my attention when I told the Sutton carers centre in my constituency that this debate was to take place and asked it for an example of how the 191WH benefits system sometimes lets carers down. Eddie Parsons, the carers' information and support worker, told me about the case and accompanied my constituent to her next interview at the Benefits Agency to support her and again explain her circumstances to the officials. During the interview, she was accused—the precise wording was not taken down—of evading work, of trying not to take on a work responsibility. Finally, the Benefits Agency worker explained that the daughter's ICA claim had been turned down because her mother did not receive attendance allowance. Why that had not been flagged up at the start of the process beggars belief.
According to a 1998 survey by the Department for Work and Pensions, anything between 40 and 60 per cent. of those entitled to attendance allowance do not claim it. In the case to which I have referred, the parents were unaware of their entitlement, a problem that other hon. Members have mentioned. As a consequence, the benefit was not claimed, the entitlement was not established and the ICA was not available. The parents are now applying for the benefit, but have been told that they may have to wait for two months and go through appeal procedures to get it.
The system let the mother down in the first instance by not ensuring that she was aware of her entitlement to attendance allowance. Secondly, the system let down the carer by not listening when she explained her circumstances and not signposting a way forward that would enable her to gain entitlement to the ICA and to discharge the caring responsibilities that she had chosen to undertake.
This afternoon, I shall attend a question time session with carers in my constituency as part of carers' rights day. I hope that the Minister will go beyond her intervention and explain what I can tell them about how such a circumstance can transpire and what can be done to ensure that it does not happen again. We have also heard that, at present, there are no reliable figures for the take-up of ICA. Research is therefore needed to underpin our understanding of how we can target take-up campaigns more effectively.
We know that one of the most important changes in a person's life that leads to the onset of a caring role is the discharge of a loved one from hospital. In that context, reference was made to research carried out by Carers UK, which found that 70 per cent. of carers who took on a caring role were not consulted about whether they wished to do so. I hope that when the Department of Health issues fresh guidance on discharge planning, we can ensure that information on benefits checks is built into it. Those who are about to be discharged should be given advice about their likely entitlements so that they can make further inquiries, and carers should also be given that advice through their assessments.
We have not yet mentioned blue badges, or disabled parking badges, in this useful debate. A short while ago I met a constituent—the carer of a young child who has attention deficit hyperactivity disorder and whose condition is on the autistic spectrum—who was concerned about the eligibility criteria for disabled badges. I have had several letters in my mailbag recently on the same issue. The constituent applied for a disabled badge and was told that it could not be made available because the scheme was designed according to the 192WH recipient's ability to walk. However, the concern in this case was the ability of the recipient to walk safely, because of the child's autistic condition and their challenging behaviour, which made life very difficult for the carer and the parent to carry on with their caring duties. I would have welcomed the opportunity to expand on that issue.
Will the Minister ask the Department of Transport to examine the criteria, so that they can be made more flexible? In that way, the situation would be improved for thousands of carers in the United Kingdom, and probably hundreds in my constituency, who have responsibility for caring for disabled children and who would find a disabled badge a god send.
We have had a useful debate, which has illuminated some of the concerns of carers in the UK. It is not the first debate on the issue this year. That demonstrates that hon. Members on both sides of the House are concerned about the value that we place on carers. They are the backbone of our caring system, and it is our duty to ensure that they receive the support that they deserve.
§ Mr. Oliver Heald (North-East Hertfordshire)
I shall take up the point made by the hon. Member for Sutton and Cheam (Mr. Burstow) about the blue badge scheme. My experience of that issue is different from his but I, too, am concerned, and I hope that the Minister will comment on it.
The case concerned a child with mental health problems. A badge had been issued to the family, but they found that they received abuse, and had difficulty in using the badge, because members of the public did not understand that the child was entitled to it on the basis of the sort of safety concerns outlined earlier. The public did not appreciate that, because the nature of the badge implies that it is related to physical mobility and walking.
The hon. Member for Sutton and Cheam made another good point about the complexity of the benefits system, which echoed that made by my hon. Friend the Member for South-West Devon (Mr. Streeter). In the example given by the hon. Member for Sutton and Cheam, it was the fact that the mother had not received attendance allowance that had led to the surprising events in relation to invalid care allowance. Does the Minister have any plans to simplify the system, and, if so, will she outline them?
I congratulate my hon. Friend the Member for South-West Devon on securing the debate, and for doing so in such a timely way; we are discussing carers on carers' rights day. It is not often that the House of Commons is as efficient as that. I notice, Mr. Deputy Speaker, that you are looking doubtful at that statement, but I believe it to be unusual that we manage to be that effective.
I notice that early-day motion 254 on the Order Paper today also highlights the support of many Members for carers' rights day, and pays tribute to Carers UK and to Lloyds pharmacy for all their support for that day.
My hon. Friend started by talking about the scale of the issue; the 7 million people in the country who are looking after someone who is sick, frail or disabled. Many of those carers are unaware of the help that is available to them. Carers UK conducted a survey in 193WH which it found that half the number of carers said that it took them two years to realise that they were, in fact, carers, and were therefore entitled to receive help. Last year's carers' rights day led to a 12.5 per cent. increase in claims for invalid care allowance in the following quarter, which is worrying.
As I said, there are no accurate take-up figures for ICA, and it would help to know the exact scale of the problem when targeting campaigns. The research undertaken by the Princess Royal Trust for Carers—which shows that the carers who have cared for the longest period of time are those with the least information—could be properly tested. We could examine ways to tackle the problem for the generation that is not receiving the advantages brought by the more recent changes.
It is right to welcome the Government's actions in extending ICA as an underlying benefit and in providing the extra payments after death. Those are caring measures that we should all welcome. It was right of my hon. Friend to mention "Without us…?", the Carers UK report that demonstrated the economic value of carers, replacing whom would cost £57.4 billion. It is also worth remarking that the number of carers has risen by 70 per cent. in eight years. As my hon. Friend the Member for South-West Bedfordshire (Andrew Selous) said, the projections are worrying. Given the estimates for the increase in caring need, as many as 9 million carers could be required by 2037. One of the documents that Carers UK produced highlights the case of a carer from Liverpool—Roger, aged 48—who made the point:We save the country a fortune by a life of long hours, hard work, physical and mental pressure.
It is right that we should recognise that and pay tribute to it today, but there is a moral and an economic imperative in giving support to carers. I visited several carers' groups in the past year, and spoke at a "Rethinking Severe Mental Illness" meeting in Oxford. What impressed me was that not everyone had wanted to be a carer—many had found it extremely hard—but by coming together in a carers group they could provide each other with a tremendous measure of support.
A young man and his carer were talking about the drugs that are now available to tackle schizophrenia. The group had a wealth of knowledge about the different medications that are available, which brings me to an important point that has already been mentioned; we do not always know exactly what information carers want. The information that we give should he informed by the views of carers themselves. We should make as much use as possible of carers' groups and the voluntary sector when we consider the issue. The Princess Royal Trust for Carers found that all too many carers want more information about medication and its side effects. Six out of 10 believe that they do not have enough information about medical procedures such as giving injections, using catheters and dialysis. A third of carers said that they found the sources of advice and help difficult to use. Paragraph 8.8 in the summary of conclusions states:A significant minority of these carers were shown as lacking access to support, information and contact with health and social care professionals. A picture emerged of 'information-poor' carers.194WH Do the Government have a strategy for tackling the problem? It would help if they did the requisite research and knew more about it. Producing a plan to deal with this information-poor group would be an extremely good contribution.
Some carers say that they would appreciate information about simple things such as lifting techniques. They can suffer illness because they do not have the requisite knowledge. How should we best tackle that problem?
We have heard a good deal from the Government about respite care. That is welcome, but I want to ask for two points of information. In mental health, 700 more staff are projected for 2004 to enable carers to take more breaks. That is the target. I have asked several parliamentary questions but found no evidence that, two years into the NHS plan, any of the extra staff have been employed anywhere. Can the Minister give an assurance on that? Secondly, what of the voucher scheme? It is a long time since consultation and most of us expected that something would have happened by now. Will the Minister also help us on that?
On the recommendations from the trust, my hon. Friend the Member for South-West Bedfordshire mentioned the register proposed in paragraph 8.11. Do the Government welcome it and what is their response?
On premature discharges from hospital, the Minister will know that Carers UK stated:Our research shows that policies to reduce delayed discharge can result in patients being sent home too soon and without proper support. The proportion of patients readmitted to hospital within two months more than doubled—from 19 per cent. in 1999 to 45 per cent. in 2001.The Minister will know that the more recent figures are even worse.The same research found carers struggling to cope when members of their family were sent home. Nearly half of those surveyed said that they had not had enough support.Given that many of the carers are elderly and not in good health themselves, it is terrible if patients are sent home too early. The reason is probably connected with bed blocking. The Minister knows that 60,000 care home places have been lost in recent years as a result of Government policy. Bed blocking happens in virtually every hospital in the country. Are risks being taken by sending patients home rather than to an institutional placement? If so, what are the Government doing to halt this unfair burden on the carer?
Does the Minister agree that employers could do more through carer-friendly practice? Do the Government have any proposals to encourage that? My hon. Friend the Member for Wycombe (Mr. Goodman) referred to charges. What is the Minister's take on that? The wider range of care is obviously welcome, but could the position be ameliorated?
Carers' rights day provides a great opportunity across the country, with 250 events taking place. It should help people to learn more about help available through the benefits system and community services. Everyone welcomes what is happening today. However, would it not be better if the information were made simpler through a streamlined system that people could more readily understand? It is surely a criticism of the Government's overall policy on benefits that it is impossible for many people to understand the system or 195WH involve themselves with it. The complexity of forms is a real problem. Are there any plans to simplify the system, the procedures and the forms? It would greatly assist many people who do not currently take up their benefits.
§ The Parliamentary Under-Secretary of State for Work and Pensions (Maria Eagle)
The debate has been good as well as timely. The hon. Member for South-West Devon (Mr. Streeter) has been assiduous in securing it on the right day. He took his opportunity to set out both the current situation and the concerns of his constituents in detail. I congratulate him on that.
I shall set out briefly what the Government have done to improve the support and help given to carers and will use the rest of the little time available to answer the many questions that have been put. I shall do my best to canter through them, and I hope that hon. Members will forgive me if time constraints mean that I do not reach all of them.
This is one of the first Governments to have focused on the needs of carers in the way in which we have done—to be fair, the hon. Gentleman recognised that and said that he approves of what the Government have been doing—which has resulted in an extra £0.5 billion package to provide fuller support for carers than they have had previously. Until 1976, the benefits system did not recognise the work of carers at all, so this is a major change for a system that has been going since the 1940s. Invalid care allowance is the only real recognition of the work that carers do. As hon. Members have said, there are many interfaces with social services and elsewhere. Some of that is welcome but other aspects of it cause some of the complications that have been mentioned.
The aim of the extra package is to improve the support for carers, particularly older and poorer carers and the many who seek to combine work with their caring responsibilities. As a result, the ICA earnings limit was increased in April 2001. Many carers work, and ICA is a maintenance benefit; it exists to give a measure of financial support to those who have to give up work. To be eligible, one has to do 35 hours of caring per week. That does not leave much time for working, which is why I was surprised and appalled to hear the story told by the hon. Member for Sutton and Cheam (Mr. Burstow). I hope that he will give me the full details in writing, because what his constituent was told was wrong. The mistake should have been spotted earlier. The story sounded so bad that I would like to look into it. His point about attendance allowance is correct. For the carer to be entitled to ICA, the disabled person who is being cared for has to receive a qualifying benefit. On the evidence of the circumstances that the hon. Gentleman outlined, his constituent's mother should have been eligible for attendance allowance. I hope that the problem can be sorted out.
There has been an increase in the earnings limit from some £50 to £75, plus additional expenses, to enable those who care to stay in touch with and remain in the labour market. There has also been an increase of £10 per week in the carer premium for carers at the lower end of the income scale. As many hon. Members have mentioned, carers often pay a financial penalty for the 196WH caring that they do. The premium focuses on their needs. An extra £10 per week in income-related benefits via the carer premium has been widely welcomed and benefits more than 233,000 carers.
The name of the benefit will—at last—change to carer's allowance in April 2003. It amazes me, but it is a feature of the social security system that changing the name of a benefit can take longer than making any of the other reforms that we have made. That is because ancient computer software means that we cannot generate letters with the right name on them until it has been updated next April. At that point, we will at last have completed the package of increased support.
There is an eight-week run-on of ICA when a disabled person dies. It is incredibly insensitive for virtually the first letter for someone to receive after they have been bereaved to be from us saying, "Give us your book back. We want the money back." The eight weeks will at least enable carers a little time to adjust to the new circumstances that they face. Often, bereavements following care for many years are even more difficult to adjust to than others.
From October, we have also extended ICA to the over-65s. There have already been 18,000 applicants for ICA who are over 65, 7,500 of whom have underlying entitlement to ICA in income-related benefits, and 4,000 of whom receive payment as well because they are poorer carers. We have focused on those poorer and older carers whom Opposition Members mentioned.
Many hon. Members raised the issue of take-up and whether there were take-up figures for ICA. Entitlement to ICA is increasing and the numbers are increasing annually. The forecast for this year is up to 421,000, whereas the 2000–01 figure was 390,000. As ever in the benefits system, we send out general information to try to encourage people to take up that to which they are entitled. Of course, the basic responsibility is to claim. We cannot seek out everyone for every benefit; we would spend our entire budget on that if we were to try it. We want people to claim their entitlements.
We have reduced the length of forms. The minimum income guarantee form has been cut from 40 pages to 10. We have recently completed an experiment to cut heavily the attendance allowance form for over-75s, and that has been successful. New computers in disability benefit centres mean that we can tailor our forms and identify people's requirements in a much more focused way, instead of having to ask people to fill in a general form about everything. We are also conducting experiments in Glasgow on the disability living allowance. There has been movement due to the introduction of new computer technology. The old technology has restricted us in the past.
§ Maria Eagle
I wish I could give way, but I have hardly any time and will not reach most of the points made.
Many hon. Members mentioned employment. With Carers UK, we are funding a project called "Action for Carers and Employment", which will assist carers to keep in touch with the labour market. The average time on ICA is two and a half years, so it is tremendously 197WH important to give carers who care for such periods that sort of information. They will not then be disadvantaged if they want to return to work.
Flexibility in provision was referred to. The Carers and Disabled Children Act 2000 allows for direct payment, which is an excellent way to ensure flexibility. It means that resources go to specific carers to be used as they want, to meet their needs when they want them met. That means that the local authority does not tell them when they will be given provision. The authority in the area represented by the hon. Member for South-West Devon has made direct payments, which I welcome.
The short-break voucher scheme was led by the Department of Health. Guidelines are being drafted and we expect publication early in the new year. That is another way to increase flexibility where direct payments are not taken up or not quite as appropriate, so that some respite care is given.
Hon. Members also referred to the fairer charging policies. They arise out of "Charging with Care", the Audit Commission report that suggested that there was too great a disparity between charging policies. Department of Health guidance has been issued on the subject. Local authorities are not required either to charge or to charge more than they do. I am sorry to hear the point made by the hon. Member for Wycombe (Mr. Goodman) about massive increases. The Government do not require them. Social services budgets have been increased by the Government by more than 6 per cent. this year, so there should be money available to enable local authorities to make good choices. I hope that the local authority in the hon. Gentleman's constituency will bear that in mind.