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Westminster Hall

Tuesday 16 October 2001

[Sylvia Heal in the Chair]

Carers

Motion made, and Question proposed, That the sitting be now adjourned.—[Mr.Pearson.]

9.30 am

John Robertson (Glasgow, Anniesland): I am delighted to have secured this debate to discuss an issue that affects not only many of my constituents but people across the country. I am confident that few Members will not have been approached by carers or carers' organisations in their constituencies highlighting the problems that they face.

I should like to acknowledge the care workers and care staff working in the UK, and the voluntary organisations that provide a valuable service to the national health service. This morning, however, I should like to focus on carers who look after a relative, friend or partner who, because of age, illness or a physical or learning disability, needs support and cannot manage without help—in other words, people who provide care through sheer necessity and not through a contract of employment.

The latest figures show that there are nearly 5.7 million carers in the UK, which is approximately one in seven of the adult population. The 1999 general household survey revealed that that number is increasing. For example, in 1999 there were 620,000 adult carers in Scotland compared with 500,000 only four years previously. The survey also showed that the number of carers providing support for more than 20 hours a week has increased by 13 per cent. since 1990. There are approximately 185,000 adults in Scotland at the heavy end of caring.

It must be recognised that providing care ranges from occasional help such as helping with shopping to providing continuous care. It is estimated that approximately 60 per cent. of carers who look after someone in their home provide personal care such as bathing, washing, dressing and toileting. A similar percentage of carers provide physical help such as getting in and out of bed, walking and getting up and down stairs. Approximately 27 per cent. of carers take responsibility for administering medicines, 60 per cent. look after someone with a physical disability, 7 per cent. look after someone with a mental disability and 15 per cent. provide care for someone who is both mentally and physically disabled.

The invaluable contribution made by carers should be properly recognised and supported. They contribute a great deal to society and save the NHS billions of pounds each year, yet they make untold sacrifices and often feel unsupported and isolated. The tasks involved can lead to physical and mental exhaustion and stress, which can affect the health of the carer and have a knock-on effect on the person being cared for.

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Figures show that the peak age for becoming a carer is between 45 and 64. Carers in that age group can feel socially excluded as many give up paid employment and a career to care for someone, and that can lead to financial hardship. As one 56-year-old carer said:


Another carer said:


Young carers also experience stress and isolation as their schooling is often affected. Many of them are unable to enjoy the social activities that their peers take for granted. Worst of all, many carers feel demoralised by the lack of status that their role brings.

The general household survey also uncovered some disturbing facts about the additional help provided, or at least available, for carers. Some 53 per cent. of carers who live in the same household as those they care for said that they were the sole carer. Some 75 per cent. of those receiving care from someone who lives in the same household had no regular visits from professionals such as doctors, district nurses or social workers. The proportion of households that receive visits from health professionals is declining and that increases pressure on the carer.

The Government have already made bold moves to address those difficulties. They are increasing the recognition that carers receive, and easing the burden on their lives. The Employment Relations Act 1999 ensured that, for the first time, those who combined caring with employment would have the right to unpaid time off to deal with difficult caring situations, such as arranging residential care. The 1999 Act encompassed a range of domestic situations, including those involving unmarried partners, and carers who have responsibility for people living outside the family home.

In October 2000 my right hon. Friend the Secretary of State for Work and Pensions announced an extra £191 million aid package for carers; 300,000 of them could benefit from that in the next three years. Those measures led to the Government's consultation on the invalid care allowance, which was widely welcomed. The consultation period ended yesterday, and I look forward to hearing the recommendations that follow it.

The Government's proposal to allow carers who are over 65 years old to claim invalid care allowance for the first time is particularly welcome. ICA not only provides financial help, but confers recognition on the role that carers play. Benefit provisions for carers aim to maintain the income of those who give up the opportunity of full-time work to provide someone with regular and substantial care. It follows that those who have reached pensionable age do not sacrifice the opportunity of full-time employment, but as Age Concern rightly pointed out:


Extending ICA would help to secure equal treatment for all carers, and ensure that conditions of entitlement were uniform. I hope that the widely welcomed proposals to extend ICA to those over 65 years old will be introduced as soon as possible. There are strong arguments to suggest that the ICA should not remain an

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income replacement benefit, but should be extended to cover the additional costs that carers incur through their duties. There is a strong case for waiving the overlapping benefits rule.

Benefits for those who need care are often reduced or taken away altogether. A disabled person who lives alone but needs help from someone outside the caring profession is entitled to the severe disability premium, but once the carer is in receipt of ICA, the premium is scrapped. The person who is cared for is often unaware of that rule, and ultimately loses control of how his or her care is administered.

The premium allows the disabled person a degree of flexibility, but that independence is eroded once the premium is withdrawn. Carer UK and many carers have told me that that is a continuing problem. The severely disabled often face the dilemma of deciding which benefit they should claim. I hope that the Government will look into the matter.

The consultation proposes to allow the carer to receive ICA for eight weeks after the death of the person receiving care. That will make a huge difference to the carer, and will help them not only to cope with the loss of a friend or relative, but to adapt to a new domestic and financial situation. I commend the Government's recommendation and hope that it is implemented soon.

I welcome the proposal to change the name of the invalid care allowance to carers allowance. That will direct the focus away from those cared for and toward the carer, thus increasing awareness, recognition and the status of the role.

Some organisations have called for an increase in ICA. The Scottish Carers Alliance, among others, has called for ICA to be set at the level of the basic state pension. The Government recently indicated that the estimated cost of increasing ICA to that level would be £650 million in 2001-02. However, to be entitled to ICA, someone would have to be caring for more than 35 hours a week. Some carers work less than that, but others considerably more. For the sake of argument, let us assume that the 5.7 million carers in the United Kingdom average a 35-hour week. The minimum wage is now £4.10 an hour. If carers were paid an hourly rate for their work, it would cost the country a staggering £42.5 billion per year. The most recent official figure is £34 billion but that dates from 1993. The introduction of the minimum wage legislation alone does not account for the increase—we must keep in mind the increase in the number of carers during that time.

As things stand, most carers earn approximately £1 an hour. Considering that ICA is intended as replacement income for those who give up or are unable to take up full-time work, the current rate is far from adequate. Carers' organisations commended the Government for raising the earnings limit from £50 to £72, which will then rise in line with the lower earnings limit. That figure has not changed since April 1993, and the new level will make some difference to those who need to combine care with employment.

Some carers are hidden carers. They may not even know that they are carers and, because they are not known to relevant authorities, they may not be aware of the help to which they are entitled. In Anniesland, the

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Princess Royal Trust has pioneered a number of methodologies in partnership with local GPs and pharmacists in order to identify hidden carers. For example, GPs have written to their patients asking them whether they care for someone; pharmacists have been placing surveys in all prescription bags and health centres have been conducting surveys. In order to publicise the benefits and the help available to carers, it is important that those hidden carers are identified. The holistic approach taken in Anniesland has been very successful, and I would welcome a move by the Department to pilot such schemes nationwide. Although the Scottish Parliament has responsibility for many matters relating to health provision, in this area in particular, examples of good practice can be monitored and adopted for the benefit of the whole country.

The Carers and Disabled Children Act 2000 gave carers the right to an assessment by their local authority to determine whether they were able to provide the required level of care. Those assessments can make an enormous difference to both carers and those in need of care. However, many carers complain that it is often extremely difficult to get that assessment, and carers' organisations have told me that the social services, health authorities and other relevant organisations are often unaware of their obligations. I urge the Government to ensure that those professionals are aware of the need for assessments and are equipped to carry them out.

Carers have brought to my attention the poor standard of information and support that is often all that is available when someone in need of care is discharged from hospital. In many cases, someone leaving hospital will require care for the first time and carers often find that they are left without instructions or information on where to turn for help. GPs also need to play their part in identifying and supporting carers, and that requires Government support. Surveys conducted among GPs found that many perceived that they would not be able to meet the carers' needs. However, carers often have relatively modest needs such as needing information or being directed towards sources of help.

Research also reveals that up to 50 per cent. of carers have suffered a physical injury while caring, such as a strained back. A similar percentage of carers said that they had been treated for stress-related problems since they began caring.

Many GPs recognise that they can prevent the health of carers from deteriorating by supporting them. That, in turn, reduces the strain on primary care resources. The NHS plan puts forward prevention as one of the five key challenges that face the NHS, and ensuring that carers receive support will be crucial if the NHS is to meet that challenge.

At the weekend, my mother's kitchen caught fire. She is almost 81, and I suddenly became aware that I was now her carer. The house was gutted and my mother was taken to hospital. She was, I am glad to say, all right. I was not at home at the time, but my wife took the call and we took my mother to my house. My mother has great difficulty in walking. The toilets in my house are upstairs, as are the bedrooms, and the kitchen and living area are downstairs. My mother could not climb the

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stairs. She is an old lady who needs to go to the toilet regularly, and I had to carry her upstairs four times so that she could go to the toilet and then back downstairs to watch the television where she was comfortable.

Although I have a slight knowledge of what to do, it took me eight hours to get help from the local council's social work and housing departments. Can Members imagine what it would be like for someone who had no such knowledge? Clear and concise guidance is needed, including emergency and advice numbers. I hope that the Government will consider looking into ways in which carers' rights and the responsibility of local bodies can be publicised. Carers are often unaware that they can get additional assistance such as respite care, adaptations to the home, equipment for the disabled and meals on wheels. The 1999 general household survey found that only 22 per cent. of carers reported that the person for whom they cared received home help. Only 8 per cent. of those who are cared for received meals on wheels. Most shocking of all, perhaps, was the fact that almost 50 per cent. of carers reported that they had not taken a break of at least two days since they started caring.

I have raised a number of issues relating to the problems that carers face and I would like the Minister to answer some questions. What can be done about the unequal and confusing benefit system? What more can her Department do to ensure that carers are properly identified and supported? What additional help will be given to young carers? Will the Department look at ways of advertising the importance of caring, so that carers are more aware of the help to which they are entitled and so that key professionals are also aware of the problems that carers face?

9.48 am

Mr. Michael Weir (Angus): The hon. Member for Glasgow, Anniesland (John Robertson) has raised an important issue that affects many people throughout the country. Obviously, my particular interest is Scotland where, as the hon. Gentleman said, there are a great many carers. The hon. Gentleman rightly concentrated on the difficulties of the benefit system. For many carers, however, much wider issues affect their daily lives.

The hon. Gentleman mentioned holistic systems in Anniesland, but many other areas require joined-up government to consider the impact on carers and the persons for whom they care. I have some personal experience of that, particularly in regard to the care of children. Many carers of disabled children have great difficulty not only with benefits—including the invalid care allowance —but with the disability living allowance through which money is claimed for children. Negotiating that system and claiming the two allowances can be a nightmare. Many people are rejected on their first attempt and are forced to appeal, and thus the systems drags on. If a person is already caring for a disabled child and dealing with the associated day-to-day difficulties, it can be frustrating and depressing going through the benefits system.

Another problem is education. Hon. Members will be aware of the difficulties that those caring for disabled children face when they try to get them a proper education. Under the education legislation, local authorities can be forced to maintain a record of needs

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for such children. That provides the opportunity for someone to insist on provision for a child's needs, but that, too, can be difficult. Although some local authorities are good at operating the system, others are not, and achieving a record of needs can prove to be a real battle. One reason for that is that a record of needs can be a powerful tool for the parents of a disabled child in arguing that the particular educational needs of the child should be met. Local authorities face the problem of being under tremendous financial pressures. Education for disabled children is suffering, along with other education services, because of a lack of resources.

The Government need to look beyond benefits and examine the whole structure that is designed to help carers and their charges; that includes education and the health service. Although there is often integration between the health service and the social work department of a local authority, those services are overstretched and it is difficult to obtain the necessary level of care. Such matters must be examined.

Some of the proposals mentioned by the hon. Member for Glasgow, Anniesland are welcome. If the Government were prepared to extend the invalid care allowance to those over 65, that would be welcome and would find support throughout this Chamber. It is wrong that people over 65 cannot currently access that benefit. It was also mentioned that the benefit could continue to be payable eight weeks after the death of the person cared for; that would also be welcome. However, a longer-term solution must be considered. Many people give up their careers in their forties to look after relatives for many years, and it is extremely difficult for them to restart their careers later in life. After caring for a disabled person or elderly relative for many years, some people find it impossible to return to the job market. Serious work is required to find the best way of helping those people and to ensure that they are not penalised for their choice—one taken out of love and a sense of duty—to look after a disabled relative. It is important that the Government examine how to adjust for that.

The serious problem of overlapping benefits was mentioned. One of my constituents gave up work to look after her elderly mother. She was advised to apply for the carer's premium invalid care allowance, which she did. She was given the allowance but her mother's benefit was reduced by an equivalent amount. At the end of the day, she was no better off. In fact she was placed in great financial difficulty. The woman had given up her job to look after her mother, who would otherwise have had to be looked after at our expense as taxpayers, and she has been severely financially penalised by the way in which the benefits system works.

I was interested to hear the idea of a holistic approach that would consider all benefits together. The system requires simplification to avoid the situation where claims made for different benefits effectively cancel each other out. There should be a one-door approach so that the carer and the person being cared for can approach the Benefits Agency together and work out the best package for their needs. That would be better than having two applications going down different routes, both of which could take a long time to get through and eventually be pointless because they cancelled each other out. Will the Minister comment on that, and, when considering the report, look in detail at how the

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benefits system can be streamlined to aid situations in which both the carer and the person cared for are on benefits? A holistic approach must go beyond benefits. All Government Departments must be involved in examining how we can help carers, for example through education. In Scotland, that must involve the Scottish Parliament and its agencies.

Carers come from all age groups. We must examine how to support young carers who are looking after parents whose schooling is severely disrupted, and how to put respite care in place to prevent that. Those children's opportunities for the future can be severely damaged because they have taken on the duty of looking after a disabled parent. Job opportunities for those who have been caring for some years also need investigation. Will the Minister examine such points, and comment on them in her reply to the debate?

9.56 am

Dr. Evan Harris (Oxford, West and Abingdon): I am delighted to contribute to the debate. We have some time left, as there have been surprisingly few contributions from Back Benchers. However, those that we have heard make up in quality what we have missed in quantity.

I pay tribute to the hon. Member for Glasgow, Anniesland (John Robertson) not only for introducing the debate at such a timely moment—at the end of the consultation on changes to invalid care allowance—but for having spoken in such a clear and structured way. He has raised many issues, refusing to look at care narrowly. I am pleased to see the Minister from the Department of Health here although some issues that have been raised relate to areas well outside her Department. We recognise that she may have difficulty in giving very detailed responses to questions relating to education, or to the work of the Department for Work and Pensions. The hon. Member for Glasgow, Anniesland let several hon. Members know which areas he intended to cover and I am sure that that will aid the debate.

I hope that the Minister will be able to answer some of my questions or at least recognise that I have asked them. The consultation on invalid care allowance has been widely welcomed. The Liberal Democrat party proposed something similar. Although we are sure that the Government came to a decision separately and deliberatively, we are always pleased at such coincidence of intention about an important change.

The importance of all the proposed changes should not be understated. Sudden bereavement can have a disabling effect on carers. It is unreasonable to expect them to go straight from the caring place to the workplace—from the home to the job centre—immediately after bereavement. That problem will be solved if the Government implement the proposal to allow ICA to be paid for a further eight weeks, as the hon. Member for Glasgow, Anniesland said.

Uprating in line with the lower earnings limit is also welcome. I hope that that will be pegged for the future so that it will be seen to rise as the lower earnings limit rises. There is nothing more difficult in a Member of Parliament's postbag than the complex benefit cases

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that we receive, especially in relation to the so-called overlapping benefits—a phrase that hides some of the complexities and three-letter abbreviations. When I get a letter asking whether the SDP is valid, I think back to my own political history as well as wondering what on earth is going on.

A huge amount of support is available to carers, if they only knew, through the Citizens Advice Bureau, through carers' associations, in my area set up by the Princess Royal Trust, and through tertiary referral from the citizens advice bureau to welfare rights organisations, which do tremendous work. I pay tribute to Peter Turville and his colleagues at Oxfordshire Welfare Rights, whom I have never known to lose an appeal. It is important to recognise the work that is being done.

It is difficult for carers to know that such help and advice exists. Many are too busy caring to realise that it is out there, or too stressed to access it. The Government should consider some form of wider advertising campaign so that the take-up of help and benefits is greater. The Exchequer may see some merit in unclaimed benefits, but it is the policy of all Ministries to try to ensure maximum take-up. It is such a complex area that there should be a way of ensuring, through outreach, that information is more accessible. For example, in my constituency a carers' centre has gone into GP surgeries to offer a carers' clinic, because GPs are often likely to pick up problems that carers are suffering as a result of work load or stress. Although that may not be the first thing that they mention to the doctor, it may be the underlying cause of their complaint. We should take a more holistic approach whereby GPs and other health care professionals think of referring a carer for social services assessment or reassessment and for help and advice with accessing benefits for themselves or for the person for whom they are caring.

As the hon. Members for Angus (Mr. Weir) and for Glasgow, Anniesland said, the earning potential of people with caring responsibilities is significantly impaired by their caring duties. Consequently, they are less likely to be able to contribute to a work-based pension scheme or to make provision through a private pension. Moreover, most of the burden of caring falls upon women, who traditionally have never had the opportunities in the workplace to improve their pension position over and above the state pension. Support for the basic state pension is—the Minister may not find this a fashionable word—a feminist act. We must deal with that indirect discrimination by making extra pension provision for women who may be caring for disabled children because of their traditional caring role or, owing to their greater longevity, are looking after a partner or parent who is disabled or otherwise in need of care. The debate about the appropriate level of the basic state pension and the minimum income guarantee—which requires means testing—has taken too little account of their disproportionate impact on elderly carers.

While I am on the subject of support for carers who are discriminated against, the Minister may be aware of the question of pension sharing for partners who are not married. I have participated in many campaigns concerning people—of the opposite sex or the same sex—who live together but are not married, one of

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whom has taken on a caring role and has been unable to benefit from bereavement benefits from the pension scheme where the person cared for has a pension scheme in the state sector. Traditionally, the private sector has made much greater allowance for that, and it is sad that the state sector has failed in that regard.

The statutory public sector pension scheme has failed to keep pace with the modern era. A carer who has worked in the health service for his or her entire working life as a nurse—a relatively low-paid job—and who is caring for another nurse, will find that the NHS superannuation scheme does not recognise their partnership and position of care. I hope that the Minister will provide for less well-paid workers the same benefits that her colleagues and other hon. Members voted for themselves after considering a resolution for another public sector pension scheme—the MPs' pension scheme.

The hon. Member for Glasgow, Anniesland also mentioned the importance of assessment for carers. There is a statutory right to assessment, but many carers say, "Yes, we have a statutory right to an assessment of our needs, but do we have a similar right to access the care for those needs that the assessment states is appropriate?" To judge by letters that I have received, the squeeze on social services funding that occurred during the last Parliament is a major problem not only in my constituency but in the whole of Oxfordshire and throughout the country. Funding for social services, which is so important in providing help and respite care for carers, was cut in real terms in the first two years of the last Parliament. Overall, funding barely rose during the last Parliament, despite an ageing population and the additional duties that were imposed on social services departments.

Yet again, Oxfordshire and many other local authorities face a squeeze on spending. It is the non-statutory duties—the discretionary provision of services—that are affected. Often, that impacts on support for carers. As we know, there is pressure on beds in the intermediate care sector. When there is such pressure, respite care, for which such beds are often used, is squeezed. Is there a strategy, plan or target—on this rare occasion, I will accept a target from the Minister—in respect of the availability of respite care beds in the NHS or, as a second preference, in social services? In Oxfordshire and many other places, the reduction in community hospital beds serving that function has proved damaging to respite care.

Of course, the Government recognise that without proper provision of respite care, carers are often unable to continue their work. Such a breakdown of care roles can lead to an acute hospital admission. The hon. Member for Glasgow, Anniesland rightly pointed out the amount of what is in effect unpaid work that the state gets out of carers. Official estimates of the value of such work range from £34 billion in 1993 to £42 billion now. Such figures show the possible effect on social services expenditure of failing to provide adequately for continuation of the caring role.

In both social services and in the health service, the pressure for early intervention in care should start with the carer. It is the carer who knows best how well a person is coping. In terms of greater care needs, carers sometimes know better than even health care professionals the likely prognosis for those in care. The

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early provision of extra support and information for carers can increase the independence of those cared for, which, as we recognise, is one of the Government's aims.

The story that the hon. Member for Glasgow, Anniesland tells about his mother is salutary. It shows that even someone who knows their way around the system can find it difficult to combine the burden of caring with accessing all available care in good time. It is important that we recognise the need to empower carers. That could be done by making available a recognised advocacy service to provide carers with advice. Does the Minister have plans to use NHS Direct as a way of ensuring that carers have access to, or at least the ability to be referred to, the appropriate sources? A one-stop shop is a nice idea, although we recognise that NHS Direct may have to refer, or continue to refer, to more appropriate sources.

The hon. Member for Angus raised the issue of carers with responsibility for children having to fight for a statement of special educational needs, a continuation of that statement, or the meeting of the needs identified in that statement. I remember having many long debates about this matter with the hon. Member for Redditch (Jacqui Smith), now the Minister of State, Department of Health, and I know that she continues her interest in that subject in her current duties. Local education authorities are variable in their ability to communicate as well as provide, and I recognise the tremendous work done by the National Autistic Society and the Independent Panel for Special Education Advice in providing advice to carers and parents who have written to me.

It is appropriate that this debate is followed by a debate on long-term care. I shall not stray into that area, but it would be appropriate to mention issues such as continued independence and people living at home who require long-term care. Those issues relate to the needs of carers and the appropriate treatment of that sensitive time when care at home breaks down, often because the carer is ill. The availability of prompt, appropriate and accessible respite for the carer, if he or she becomes ill, and for the cared-for person, needs to be developed to provide a safety net to enable people with caring responsibilities to continue in that role.

In debates on health service funding, not only in the House but in the media, I hope that more attention will be given to the important role played by social services and carers. If budgets for social services and carers are not increased in line with the needs of an ageing population, which are often recognised in the health service, but not in relation to those areas, there will be a greater gap between what is needed and what is available for the carers—the heroes and heroines of today's society.

10.12 am

Mr John Lyons (Strathkelvin and Bearsden): I support the points made by my hon. Friend the Member for Glasgow, Anniesland (John Robertson), and by the hon. Members for Angus (Mr. Weir) and for Oxford, West and Abingdon (Dr. Harris).

The debate has included some wonderful examples of care throughout the UK. No matter which survey or assessment we look at, one consistent point emerges: the

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number of people who are caring and the extent of the care that they provide in the communities that they serve are underestimated. I am also struck by the clear disparity between constituencies: no two constituencies seem to work in the same way. No matter where one looks, there are different approaches: in some places the approach is very good, but elsewhere a lot of attention and support is needed.

As was discussed earlier, carers need to have access to and clear and concise information about the available services. All too often, the attitude seems to be that if carers do not make an approach, they will never find out what is available. We need to reverse that. I welcome the efforts of primary health care trusts, GPs and others to identify carers in communities. That objective has been lost somewhere along the line. We must ensure that GPs and other primary care and social services have that responsibility.

Earlier, the point was made that we have a record of children's educational needs, and there is no reason why we should not have an assessment of the needs of carers and the persons for whom they care. Again, that could be done throughout the United Kingdom so as to ensure that we introduce regulations and support for every carer, on which they could rely, knowing that they have support for what they do and that that support is consistent throughout the country.

Clearly, if we are serious about joined-up health care, whether it is primary care or social care, we must ensure that we do not have only a theoretical approach. It must be a living reality for people out there. Joined-up government is not simply a political matter; people should be able to access services without hitting major problems. That is the core of the argument and the debate. People need positive support to try to make life that bit easier. Accessing services, benefits and support should not be an obstacle course; they should be provided in a seamless way, so that carers are confident that they receive proper support and that the person for whom they care has proper support, and so that nothing that is properly due is denied to the carer and the person being cared for. It is important that we continue to emphasise that.

We must re-emphasis and accept that caring occurs across the age range—from the youngest person to the oldest. I recently received a letter from a woman of 70 asking for support, and I immediately asked myself why the carer was not writing. The person of 70 was the carer; she was caring for her mum of 93. She thought nothing of that and had done it without support for a long time, but now—understandably at the age of 70—felt that she was reaching a point where she was letting her mother down and could no longer continue to do what she had done for years. We must recognise that that is not an isolated example, but that it happens throughout the country, from the very youngest to the very oldest—that is the age range of caring. We cannot allow people to talk about carers being of only one age because it occurs across all age ranges.

We must be serious and, if we value caring, we must put our money where our mouth is and say that caring is not a cost, but an investment. If we treat it as such, we will treat it in the proper and right way.

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10.18 am

Annabelle Ewing (Perth): I thank the hon. Member for Glasgow, Anniesland (John Robertson) for securing the debate. Many important matters have been debated and there is a reasonable consensus among those hon. Members who have spoken, which will please the Minister. We all agree that carers play an excellent and key role in our society and none of us underestimates the importance of carers to us all. However, having talked to carers in my constituency and elsewhere in Scotland, I know that they feel badly let down by the policies of this Government and the previous Government. We must ensure that carers are treated properly and given the respect that they deserve, to which the hon. Gentleman referred. However, I must question whether the limited nature of the proposals that he mentioned will go far enough toward securing those objectives.

I will keep my comments brief because my hon. Friend the Member for Angus (Mr. Weir) has outlined several specific questions that he would like the Minister to address. However, a few points that have arisen merit particular mention. The first concerns the news that carers are to receive a payment after the death of their dependants. That is a welcome development, but why has a period of eight weeks been proposed? What is so special about an eight-week period? Why has a longer period not been proposed, and if that is not possible, will the Minister consider whether an element of discretion could be built in with regard to applications for such payments?

As hon. Members have mentioned, and as my mailbag reveals, a key problem with the benefits system, aside from its complexity, is that discretion is seldom built in to allow an appeal tribunal to examine the particular circumstances of a case and to make a discretionary decision. That is unusual, because an element of discretion is usually allowed, and that is the mark of a fair system. Will the Minister consider, with respect to the eight-week cut-off point, whether an element of discretion could be built in?

The need for more information has been mentioned, and that is of key importance. Many carers do not know what they are entitled to, and that is shocking. I ask the Minister to examine that problem, as it could easily be addressed.

Respite breaks for carers are not specifically covered by the proposals under discussion but, as the subject is being debated, I ask the Minister to outline the Government's intentions in that regard. When one talks to carers they say that one of the major problems that they face is that they do not have sufficient opportunity to take breaks from their arduous duties.

The hon. Member for Glasgow, Anniesland referred to the £191 million package to help carers over the coming three years, but that figure should be put into perspective; £750 million was spent on the millennium dome, which was a colossal waste of money.

Finally, I wish to express my agreement with the comments made by the hon. Gentleman and other hon. Members about the difficulties involved in the overlapping benefits system. It is cynical to offer with one hand what one takes away with the other. That matter should be addressed, as it would help carers, as well as everyone else who has to go through the tortuously complex benefits process.

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I look forward to hearing the Minister's response to my questions.

10.22 am

Tim Loughton (East Worthing and Shoreham): I congratulate the hon. Member for Glasgow, Anniesland (John Robertson) on securing the debate. It addresses a subject that is becoming increasingly important and the hon. Gentleman has personal experience of the daily pitfalls and concerns that affect millions of ordinary people.

It is a pity that more hon. Members are not present. I feel like the token Englishman, as I am the only contributor who does not represent a constituency north of the border. However, I am sure that that is an accident, as the concerns that have been raised apply to the entire United Kingdom—[Interruption.] I acknowledge that the hon. Member for Oxford, West and Abingdon (Dr. Harris) hails from west of the English border.

It is also appropriate that, as has been mentioned, yesterday marked the end of the consultation period on the proposed changes to the carers allowance, as it is now likely to be called. However, today's debate concerns the often neglected army of millions of carers in communities throughout the country, without whom the national health service and social services would be unable to function. As the hon. Member for Glasgow, Anniesland said, there are approximately 5.7 million carers and many hidden carers—at least one in seven of the population. A carer is not only someone in receipt of benefits in recognition of that role. Many care for people on a day-to-day basis, and not only for those with high profile, long-term and chronic diseases such as Alzheimer's disease or Parkinson's disease. Many care for immobile spouses, people with learning difficulties or disabled parents, as the hon. Member for Angus (Mr. Weir) mentioned earlier.

The hon. Member for Strathkelvin and Bearsden (Mr. Lyons) struck a chord when he spoke about older carers. Although it may have been rare for him to have been approached by an older carer in her seventies, as my constituency includes Worthing, which has the largest elderly population in the country, I regularly meet people in their seventies who are caring for parents in their nineties—many people in Worthing are in their nineties—and they cannot continue to do so. Some people have cared for elderly parents for 10, 20, 30, or 40 years and they are physically exhausted. That is commonplace in my part of the country.

It is not only the elderly who need care. Many cases involve children and young adults. For carers involved in such cases, the responsibility may continue for much longer than for those caring for elderly parents.

People are living longer, so the problem is getting worse. If we examine the complexion of carers, we find that most are women, in an age in which increasing numbers of women are going out to work. That means that the pool of carers is decreasing. Also, as we have heard, the impact on potential careers and earnings for such carers is severe, which has repercussions such as the lack of savings and pension plans to contribute to a carer's future prospects for long-term care.

Today's debate is an opportunity to acknowledge and praise the work of the unsung army of carers, to pay tribute to organisations such as the Carers National

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Association that provides essential support, and to raise the profile of everyday issues that affect the millions of carers who we are in danger of being taken for granted. It is in all of our interests to make the job of carers easier. Rather than placing more regulations and onerous requirements in their way, we should be asking them, "How can we make your job easier and provide you with the tools to do it?" Without carers enormous costs would fall on the state.

The hon. Member for Glasgow, Anniesland mentioned some figures that surely underestimate the problem. Glaring statistics such as carers earning the equivalent of £1 an hour are appalling. He also mentioned, rightly, that the carers allowance is not only a financial help, but a recognition of the status of carers. I am aware of the debate on the problem of overlapping benefit. People who receive a state pension no longer receive carers allowance. Someone who retires from a job can take it easy, but there is no retirement for someone caring for an elderly relative, even at the age of 85, probably until that relative dies. There is no retirement for many carers. They do not get the carers allowance after the age of 65 if they are in receipt of the state pension.

I welcome many of the changes that the Government announced to the invalid care allowance and some of the proposals currently subject to consultation. We welcomed much of the Carers and Disabled Children Act 2000, which came into effect just over six months ago, earlier this year. It is right that under the terms of that Act services are provided directly to carers to help them in their caring roles and to help them maintain their own health and well-being. We recognise the terms of that Act, which highlighted families as the natural and appropriate places for caring for children, which is absolutely right.

At the same time, as many hon. Members have already said, we need to recognise the extra duties being placed on already hard-pressed social services departments, in many cases without the full necessary funding associated with those additional requirements. For example, under the Carers and Disabled Children Act 2000, carers grant is to be paid to local authorities at 100 per cent. of the £70 million being given for carers grants for 2001-02, which will ostensibly require no contribution from local authorities. Will the Minister give an undertaking that that will be so next year, so that money is not drained from hard-pressed social services departments through the back door, having placed the extra requirements on them?

An issue of local autonomy is involved, which must be balanced with ensuring that the money goes to the right places. Carers grant guidance states:


Much criticism has been made, in many cases rightly, of the prescriptive, ring-fenced nature of so-called additional funding for local authorities, especially social service departments, which has impeded the flexibility of local social services departments to respond to local circumstances. Beside that, however, we must balance the fact that in some cases funds are being allocated to improve provision for carers, especially in respect of respite care, but are sometimes arrested at source because local authorities view the money as a way of offsetting the costs of care that they already provide.

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It is essential not to tip the balance too far either way. Social services departments are stretched on all fronts, as all hon. Members will agree from their experience with their constituents, whether in child care, care for the elderly, residential care or care in the community. This year there is already a budgeted overspend above standard spending assessment among social services departments of some £916 million, or 10.2 per cent. Authorities must spend more than that merely to fulfil the minimum requirements placed on them. In my area of West Sussex, which has the largest number of elderly people in the country, the social services department needs an extra £12 million merely to stand still and fulfil the extra requirements that the Government have placed on it. We received £7 million, giving a £5 million shortfall.

The problem is getting worse simply because of the demographics involved. By 2007, the number of pensioners in this country will for the first time outnumber the number of people under 16. Over the next 20 years, the number of over-85-year-olds, the most expensive to provide care for, will double to more than 2.2 million. The chances of an over-65-year-old man requiring residential care is 9 per cent., and for women the figure is 13 per cent. Those figures do not take account of nursing care. That means extra requirements on social services, care in the community and carers looking after people who do not enter residential and nursing homes.

An estimated 700,000 people in the United Kingdom have dementia—one in 20 of the population aged over 65, and one in five of the population aged over 80. As hon. Members have said on several occasions, there is a big disparity in the level and standard of guidance and care provided, a point made by the hon. Member for Strathkelvin and Bearsden—

Mr. George Stevenson (in the Chair): Order. We are in danger of straying to the next debate on care of the long-term elderly. I understand the connection, but perhaps the hon. Gentleman would bear that in mind.

Mr. Loughton : I am grateful, Mr. Stevenson. There is a strong connection, but I am concentrating on people with problems such as dementia and Alzheimer's disease who are cared for at home and are not in long-term residential care. The Alzheimer's Disease Society has said that 40 per cent. of those who care for people suffering from Alzheimer's disease have less than one hour a day to themselves, and that places enormous pressure on them.

The hon. Member for Strathkelvin and Bearsden referred to respite care, which is an important consideration. I held a public meeting in my constituency for representatives of disability groups, which included many carers, and a matter that arose time and again was the shortage of respite care facilities for hard-pressed carers. It is crucial that the Government recognise the extent of the problem—the simple voucher system that they have introduced is not sufficient. It is crucial that appropriate cover is available for respite care and that places are available in residential homes, but 100 care homes are closing every

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month. It is essential to recognise the necessity of providing respite care while carers are trained. Carers need training and they need cover to enable them to undertake that training.

Earlier this summer the Carers National Association carried out a survey of 2,000 carers. It highlighted a number of weaknesses in the system. Those weaknesses are worth repeating. Hospital discharges are increasingly likely to be poorly planned, timed and handled. That was highlighted in the survey entitled, "You can take him home now". In 1998, 25 per cent. of patients had to return to hospital within two months of discharge, but that figure has leapt to 43 per cent., which has led to enormous extra pressure on the shortage of acute beds, particularly when there is a bed-blocking problem. In my local hospital, 10 per cent. of beds are blocked by people for whom residential care cannot be found.

The survey also found a huge drop in the satisfaction level of carers since 1998; 72 per cent. of those surveyed said that they had had bad experiences and 43 per cent. said that they had been given too little help. Carers are picking up the pieces when hospitals fail. The number of carers who receive a care plan has fallen from 28 per cent. to 20 per cent. during the past three years. The number who are consulted before discharge has fallen from 71 per cent. to 64 per cent. and the number who say that their comments and concerns had been ignored has increased from 36 per cent. to 45 per cent. Many carers are feeling unloved, ignored and neglected and the Government must address the problem urgently.

I turn to the need for greater employer flexibility. Many companies are rightly latching on to the fact that it is important to recognise the pressures of caring for children or elderly parents if their employees are to remain healthy and to contribute fully as employees. At the moment, there is one pensioner aged over 65 for every 3.7 working people in this country. By 2020, that ratio will have decreased to 1: 3.1 and, alarmingly, by 2040 there will be barely two people of working age for every person aged over 65. The elderly population is increasing rapidly and those who care for elderly patients are likely to be experienced senior employees in their late 40s and 50s whom companies can ill afford to lose.

I pay tribute to companies such as Centrica, which recognises the problem. Its employment policy provides free access to telephones for personal calls for people who must deal with day-to-day matters for their charges; it allows flexible hours and breaks for carers with additional paid leave to match the caring that they may have to undertake. Companies should be more innovative and creative in their thinking.

Carers should feature prominently in the cycle of treatment, post-treatment aftercare and long-term care in the community. They should feature in patient plans for those who require care. That would also benefit hospitals by reducing the avoidable re-admissions that occur all too often. Better information should be available from general practitioners to carers to take the pressure off them and reference has been made to carers clinics and that is an interesting idea. We need greater interaction between carers and social services to ensure the right number and level of expertise of home visits, the availability of the right equipment to those with

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disabilities and the maintenance of that equipment. The need for respite care and training should be recognised and local support groups should be available. The hon. Member for Glasgow, Anniesland suggested that advice numbers and hot lines might also be available.

Above all, carers must be valued by the Government and all of us and their essential work should be recognised by the Government and employers better than at present. I shall repeat my opening comment that they save the country, the NHS and social services an inordinate amount of money and it is incumbent on all of us to make their essential and thankless job as easy as possible.

10.41 am

The Parliamentary Under-Secretary of State for Health (Ms Hazel Blears ): I congratulate my hon. Friend the Member for Glasgow, Anniesland (John Robertson) on securing what has turned out to be a very wide-ranging debate. The contributions from all hon. Members have given me the central message that the issue is not simply a matter for the Department of Health; the needs of carers and their families affect policy across the board. That message has been a benefit of the debate today. I shall try to deal with as many specific points as possible, but I shall also ensure that, where relevant, Ministers in other Departments are made aware of what has been said today to ensure that we provide a co-ordinated response to the many issues that have been raised.

My hon. friend the Member for Glasgow, Anniesland set out the extent of carers in this country. We have almost 6 million carers, including around 1.7 million who devote 20 hours a week to caring, and 855,000 who devote in excess of 50 hours a week to caring. That is an enormous contribution and we all echo the comments that have been made today and pay tribute to the amount of work, dedication, commitment and sheer energy that carers provide in looking after their friends, family and neighbours.

Most caring is undertaken by close relatives, but society is changing dramatically. In modern society, families are often separated, sometimes by vast distances. In times gone by, families lived close together or next door and could pop in and keep an eye on people. Today, families are more fragmented and it is more difficult for communities to provide the support structures that many of us have known in the past.

The age structure of the population is also changing dramatically. During the next 30 years, the number of people aged more than 65 will rise from 17 per cent. to 24 per cent. of the population. We hope that our policies will ensure—the evidence for that is becoming clear—that older people will be fitter and healthier and will enjoy many more years of active life, but we must recognise that there will be a much greater number of older people in the community.

Almost half of us have the chance of becoming carers and my hon. Friend the Member for Glasgow, Anniesland illustrated graphically the shock that many people suffer when they suddenly become carers and have to obtain access to the range of available information. Carers have a tremendous job in juggling their caring responsibilities with their work and families. Around 2.7 million people combine a caring role with

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work and, as the hon. Member for East Worthing and Shoreham (Tim Loughton) said, we must find ways of ensuring that employers and services support working carers so that they do not have to give up work when they take on a caring role. That is important economically, but it is also important in terms of social isolation and social exclusion, and the respect that carers need to be shown. Carers do not work simply to draw in income; many of them need to keep the connection with their work, through continued training and support, to ensure that their lives are not completely devastated by taking on caring responsibilities.

The Government have started from an important point, by asking carers what services they want to be provided. That must be reflected across a range of policies. We start by asking patients—the people for whom we provide services—and the public about their priorities, rather than assuming that we know best. Most carers said that they suffered health problems; many have financial difficulties and problems with stress and isolation within their communities. As hon. Members have said, we must ensure that we provide a joined-up response to what carers have told us, by utilising our various regeneration projects, giving primary care support—which is absolutely crucial in the community—and financial assistance to those in work and to those unable to work due to their responsibilities.

We must also help people make the transition from caring into employment, as that is a difficult time for people. The hon. Member for Perth (Annabelle Ewing) raised that issue, which is a key one for us. She also referred to the payment of the carers allowance for the eight-week period following the period of bereavement. That is linked to the period for which we pay the carers premium in relation to income support; clearly, there must be a cut-off point in the provision for that transition. The hon. Lady made an important point about the difficulties that people face when their circumstances change dramatically, but we are aligning the benefit system to reduce the number of anomalies in it. Hon. Members have referred to the difficulty in finding one's way around an incredibly complicated system. We recognise the points that all hon. Members have made about overlapping benefits—all of us would wish there to be more consistency in the benefits system.

I pay tribute to the carers centres that are springing up in many parts of the community, many of which are supported by the Princess Royal Trust. Those centres can act as one-stop shops, where carers and their families can find help with benefits and social activities. Hon. Members have not so far highlighted the wonderful things that many carers do when they get together; they provide a great deal of support for each other. They do not simply look for support from outside agencies; they get together in self-help groups, in social and family activities. I am personally aware of the tremendous range of facilities that carers centres can provide in our local communities.

We have also launched "Looking after someone", which is part of the Government website. More people are gaining access to the internet and to information online. The website contains a whole range of information for carers, about benefits, support services and facilities in their communities. Perhaps we should make an effort to publicise the breadth of information that is becoming available.

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We have taken a great deal of action for carers in the past few years, based on our strategy from February 1999, when we published "Caring about carers". That was a national strategy to ensure that people obtain information, support and financial help. When that strategy was being developed, the one thing that carers highlighted was the need to have some time out from their responsibilities; they need to find some respite and do something simply for themselves as a break from the pressures of the week. That is why we introduced the carers grant in February 1999, for which £70 million has been set aside this year. The hon. Member for East Worthing and Shoreham asked us to assure him that that would be available in future years. I can give him some good news: the £70 million for this year will increase to £85 million next year and to £100 million in 2003-04. That is ring-fenced funding, which should ensure that the services are provided. It is ring fenced because carers said, "We want that money to be available for breaks and respite care. It must be spent on those crucial services." This is an example of the Government responding to the views of carers who have told us their priorities. It will help local authorities to ensure that carers get the breaks that they want.

Exactly how local authorities spend the money is a matter for them, but we shall monitor their expenditure because we want to ensure that we obtain value for money and that carers obtain value for our investment. The balance between local discretion and national standards is a careful one for us to strike. When carers tell us what they want, we are determined to provide a system that channels money to them and their families to provide crucial breaks. We have already set up a system through the King's Fund that will evaluate that expenditure, so we shall be able to obtain evidence of what local authorities are doing.

It is important that we share good practice. Rather than continually reinventing the wheel, it may be that one local authority has a marvellous scheme from which others can learn; sharing ideas will be extremely important.

It is also important that we respond to carers' individual needs, such as when they want a break, the circumstances in which that can be arranged and what help is appropriate for the person for whom they care. One size does not necessarily fit all because people have different requirements in their families and personal circumstances. Involving carers in designing their breaks will therefore be important.

We have introduced the right for carers to have an assessment made of their needs. I am therefore delighted that there is consensus on the importance of caring services. Sometimes relatively small things can help carers to do their work better, such as practical help at home or the provision of taxi fares. Transport is an issue that has not been raised today, but it is crucial to the independence of carers and those for whom they care. It is important to try to help such schemes.

My hon. Friend the Member for Glasgow, Anniesland, he has pursued benefit issues to good effect for some time. The changes to invalid care allowance, which is to be renamed carers allowance to reflect properly the job that carers do and to give them the

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status, respect and recognition that is fundamental to our policies, mean that it will be extended to carers aged over 65. All Members who have participated in today's debate have welcomed that. The lower earnings limit will also be increased to £72 a week, which will greatly assist people who are able to work as well as to care. The allowance will also be extended to eight weeks after the death of the cared-for person. That package has been issued for consultation, which ended yesterday. It will be possible to introduce those changes by the new procedure of a regulatory reform order, which means that we can get it done faster than would previously have been the case. We shall do that as soon as we can.

In terms of financial support, from April next year the second state pension will boost the second tier pension of low earners, carers and some disabled people. There will also be a reduction in council tax for people with disabilities who live in band A properties and their carers. That package of financial measures will underpin the independence of carers and their families.

Several Members raised the issue of young carers. They are a hidden group who are not immediately visible in the community, which is something that the Government take seriously. Young carers are often faced by the prospect of many years of caring responsibilities. Ensuring that they get access to education and social opportunities so that they can, as far as possible, live the same lives as other youngsters in their communities is key. We must ensure that young people have access to the same facilities as anyone else. It is their right, and it is our duty to provide for it.

Our research shows that in years gone by the hidden group of young carers has not been as high a priority as it should have been. We have therefore introduced the quality protects programme to improve children's social services. We have also funded a project to help the Children's Society to take forward a young carers initiative. The society consults young carers directly about their views and needs and about exactly what should be put in place. It is fundamental to our approach that we will not tell young carers what they need. We want to talk to them about their lives and what they think is important. We want to develop a database and website to ensure that people have information, and a practical guide—a resource pack—for young people, so that they feel supported. They need to know that they are no longer the invisible carers, carrying a huge burden of emotional and physical care, and that people out there will provide accessible help when and where they need it.

We are making progress in helping disabled young people, through examining ways in which the quality protects programme can help a further 6,000 disabled children and their families by 2002.

The complexity of the benefits system has been mentioned, and the hon. Member for Oxford, West and Abingdon (Dr. Harris) raised the possibility of pension sharing for unmarried partners. That has been discussed in Parliament. His points about public sector superannuation schemes were valid and important. I will take up the matter in relation to benefits schemes, although on the many occasions when this has been discussed, issues about the structure of the pension schemes have been raised.

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I will dicuss the complexity of the benefits system and the impact of overlapping benefits with Ministers in the Department for Work and Pensions. I recognise that it can be difficult for carers to find their way through the system.

My hon. Friend the Member for Glasgow, Anniesland referred to the serious problem of identifying carers. Much work is being done with general practitioners in that respect. I understand that an additional question in the census will enable us to identify carers in the community. When we collate the census information, we will be able to add further details to the effective database that we already have about where carers are located. We can then target the best help to them and their families. That is crucial.

Several hon. Members suggested a helpline or a one-stop shop for advertising services. NHS Direct is a gateway into health and social services, but we are also piloting Care Direct, which is specifically designed to target people who are caring, including those who are elderly, disabled or children. That will tell people about the range of services available for them locally. People often want to know what is available for them in their communities, rather than national information. Care Direct will provide a good access point into the range of caring and support services, including benefits, aids and adaptations, and the support available through housing and education. It will enable us to join up the various services that national and local government provide for carers and their families. We will be interested to see the results of the Care Direct pilots, and I can undertake to keep my hon. Friend the Member for Glasgow, Anniesland informed about those services.

Important issues have been raised in today's debate. As the hon. Member for Perth said, we have had a degree of consensus, and I am delighted by that. We all want to do much more to recognise the enormous contribution made by carers. My hon. Friend the Member for Glasgow, Anniesland quoted stunning figures showing the value in financial terms of carers contributions. In addition we must recognise the time, energy and commitment that carers give to their friends, family and neighbours. Many carers in our country look after their friends and family because it is what they have always done and what they want to do. The Government must recognise that our job is to put in place support mechanisms to enable them to do that, while retaining their independence, dignity and respect in the community. We are determined to do that, and I am sure that all hon. Members want us to recognise the tremendous contribution that carers make to our communities.


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