Carers

HL Deb 25 February 1993 vol 543 cc388-410

6.50 p.m.

Lord Ashley of Stoke rose to ask Her Majesty's Government what action they are taking to deal with the financial, physical and emotional problems of carers.

The noble Lord said: My Lords, the truth about carers is that they are saviours, treated as shadows. They save the lives of disabled and frail people, just as much as the medical profession. Without their work the lives of sick and disabled people would be unbearable and impossible. It is time that we looked at carers with fresh eyes and recognised and acknowledged their value as human gold dust. We should treat them with the respect and attention that they deserve.

I should like to pay tribute to the Carers' National Association and the invaluable work that is carried out by its president, the noble Baroness, Lady Seear.

I should also like to pay tribute to Crossroads and the many other organisations and active supporters who do such splendid work. I have done what little I can, along with my parliamentary colleagues in another place. However, the Government have failed to take adequate action.

Carers, who provide invaluable assistance at home to relatives or friends who are ill or disabled, are still undervalued, unappreciated and underpaid. The vast majority of them are not paid at all, thus saving the Government an estimated £20 billion a year, which is an astronomical amount of money.

I should like to put some basic facts on record so that the Government are in no doubt about the magnitude of carers' problems.

There are an estimated 6.8 million carers in the United Kingdom, 1 million of whom provide care or assistance for at least 35 hours a week. In the 1991 Department of Social Security report it was stated that two-thirds of all carers say that caring has an adverse effect on their standard of living. That is a very sad fact. One quarter of them have borrowed money and 60 per cent. have cut back on normal expenditure. Half of them have drawn on their savings. Imagine the poverty, hardship and indeed the desperation involved in those facts. That is what it means to be a carer. The facts speak for themselves and they are eloquent testimony to the burdens that are borne by carers. There are differences of nearly £166 a week between the weekly incomes of comparable carer and non-carer households.

The good news, according to the Minister of State for Social Security in another place in November 1991, is that, An independent income for carers is provided in the form of invalid care allowance - ICA. The bad news is that of the 6.8 million carers only 175,000 receive that amount. By my calculation—and I am not very good at arithmetic—that leaves approximately 6,625,000 carers who do not enjoy that government munificence. That is an absolute disgrace, and I see no reason for ignoring them. Nor is the ICA, which is paid to the minuscule minority, a king's ransom. At £32.55 a week, which would buy perhaps a good cigar or two cigars, it is one of the lowest comparable benefits in the social security system. It represents approximately 12 per cent. of average earnings, even though it is supposed to be an incomes maintenance benefit. It may be enough to maintain someone in Somalia or somewhere like that, but it is not enough to maintain a person in this country at the necessary living standard. It is an insult to carers.

Carers do not only suffer poverty; they suffer lost opportunities. They cannot earn money outside, or, if they can, they have to reduce the hours that they work. Therefore, they cannot build up pension provision or save for the future. They are trapped in a downward vortex and they are inexorably drawn deeper and deeper into poverty. It is a kind of whirlpool. There is no escape from it unless the Government take decisive action.

The older carers who are over 65, who have the greatest difficulty in caring because of their age, are unable to claim ICA for the first time after the age of 65. That is not only an anomaly but it is an injustice that is begging for government action.

One of the main reasons why carers are neglected by the Government—exploited by the Government—is that they are taken for granted. They are prisoners of their own kindness. They are expected to bear the burdens of society simply because of their relationships. The Government have nothing to be proud about in that regard.

Therefore, the first thing that the Government and society should do is to recognise the enormously valuable and skilled work that carers carry out. Mere lip-service is not enough. If I may say so, there is nothing worse than Ministers wringing their hands but doing nothing. Carers must be recognised, and that recognition must be followed by action.

To be frank, the recent up-ratings have had a trifling impact on the situation, and there should be a comprehensive review of the benefit system as it affects carers.

The ICA should be raised to the level of state retirement pension and it should be related more closely to national average earnings. Rights to unemployment benefit should be restored. Older carers should receive a carer's pension.

The organisation Caring Costs has stated that three-quarters of carers are not receiving their rightful benefits. Imagine that. There are all those peanuts available, and the carers are not receiving the peanuts simply because they do not know about them, they are unaware of them, or they find the claim too difficult to make. It is important for the Government to ensure that all carers receive every penny to which they are entitled. They need every penny because at that standard of living every penny counts.

Carers need more than money: they need time off as a legal right. The Royal College of Nursing and the Spastics Society have sent me some profoundly disturbing evidence about the way that carers suffer for lack of time off. I do not have the time to detail that evidence because other noble Lords wish to speak and I should like to make a short speech. However, that evidence is profoundly disturbing. They must be allowed time off as a matter of right that is enshrined in legislation. They need support services. They have the right to be consulted on every aspect of caring and to be treated as the important people they are.

Everyone requires support of one kind or another in daily life. Everyone requires time off from the stresses of work. Everyone needs to be treated with respect. Carers need more support than many, and they suffer far greater stress than most. They deserve the respect of all of us. Those people should be at the head of the queue for benefits rather than at the back, as they are today. I hope that the debate will help to push them a little further ahead of the queue.

7 p.m.

Lord Beaumont of Whitley

My Lords, we must be extremely grateful to the noble Lord, Lord Ashley of Stoke, for introducing this important topic into your Lordships' House. It has attracted a number of highly qualified speakers. The Deputy Leader of my own party, herself at one time a carer, my noble friend Lord Redesdale, who has personal experience, and my own diocesan Bishop will produce more evidence and experience in this matter than I, and I shall therefore keep what I have to say short. Nevertheless, every parish priest must encounter in his own parish cases and problems of people who cannot cope when dealing with the immense difficulties of caring. I am grateful to a lady in my own parish who has drawn my attention to a situation that I shall mention later.

Carers need rest; they need people who are able to take their place and relieve the immense strain under which they work. Indeed, they need people who will enable them to carry out the necessary functions of their ordinary life, for some are virtually prisoners in their own homes, dependent on neighbours for help —often well given. One of the good aspects of this subject is that one is talking of immense love, self-sacrifice and help given by individuals to each other.

The work that carers do and the work that those who relieve carers do measurably improves the welfare of the community. Carers themselves relieve the community of immense expenditure which they take voluntarily on their own shoulders. I do not say that it should be otherwise; God forbid that caring should turn into part of the purchasing ethos into which our community seems to be moving in every other field. Nevertheless, carers need support from the community because the community gains from their work.

Who is prepared to pay for all this? The answer is that the community must pay in some shape or form. A community which undertakes the responsibility for ensuring that none of its members is unnecessarily deprived of modest wellbeing must pay and endure sacrifices to do so. Unless the Government are concerned to demolish the welfare state—I am fairly sure that they are not—they must see that the money is produced and that the requisite authorities manage to take on their responsibilities.

Before I sit down I should like to mention one minor case which may be tangential to the main Question but which has been drawn to my attention. It concerns the reforms that are sometimes needed in the whole pension and care system. In a case that was brought to my notice a wife who is under retirement age has been caring for her husband for many years with resulting damage to her own health. She has now been advised that he must go into residential care. Their income is made up of his retirement and occupational pensions and totals £300 per week. The charge for residential care is £320 per week. The wife has been told that the council will take the husband's whole income in order to look after him. She has a small amount of savings which she is informed she must live on, which will then quickly evaporate. She can then apply for income support.

The appalling and absurd point is that, were the woman to divorce her husband, the pension would be split between them; the council could not take it all and it would have to make up the difference from its own finances. Of course that lady has no intention of divorcing her husband. But she should not be placed in a position where it is an option. They say that hard cases make bad law. But the welfare state exists to see that hard cases are looked after. We must do something about such cases.

7.6 p.m.

The Lord Bishop of Southwark

My Lords, I too want to thank the noble Lord, Lord Ashley of Stoke, for giving us the opportunity to discuss this complex and challenging issue. It is challenging not only for carers but for those of us in society who are concerned to see the welfare of all, whether physical, mental, spiritual or emotional.

Perhaps I may, first, make the point that we should not see the needs of carers only in terms of "problems". To do so can so easily imply that the carers themselves are problems, whereas in practice we owe a tremendous debt to those people, many of whom would not regard themselves as doing anything special. They see it as their duty as wives, husbands, children or parents.

My main concern in the debate is the emotional needs of carers. They are often overlooked even by the carers themselves. Becoming an informal carer is rarely a chosen course of action. Circumstances may thrust the situation onto an unsuspecting family through accident or sudden illness; sometimes it is a gradual process that creeps up on a person unawares —an elderly relative becoming more and more dependent on others until the situation demands a radical reassessment of lifestyle. It may involve the loss of a job in order to be able to look after relatives or the relocation of an elderly person to live with children, with all the added strain that such a new situation brings.

I am reminded of a telling quote from the report by Judith Oliver of the Equal Opportunities Commission in 1982, where she said, You're just assumed to be a 'natural carer'; somehow you will magically find all the necessary physical and emotional resources to cope. It's funny when you consider the effort they go to, to give new mothers advice on how to handle babies —no-one tells you how to handle incontinent, senile parents … because it's not talked about, you think you should 'know' and then in addition to all the other pressures, you feel guilty because you can't cope with it". That lack of widespread understanding and advice may in part be due to the materialistic view of humanity which our society holds; that is, that people are only of worth when they hold the ability or potential to contribute actively to society. Those who care for the disabled, the handicapped and the elderly are often overlooked both in terms of provision of facilities and in emotional support.

I fully endorse the words of the noble Lord, Lord Ashley, with regard to the Carers National Association and its president. It is vital to the support of carers, many of whom feel overwhelmed by the scale of the job they undertake in caring for a loved one and for whom there can be a real sense of isolation and loneliness. Those networks of support are often lifelines for carers. I urge the Government to ensure that those voluntary bodies are enabled to continue their vital work, not on the hand-to-mouth existence that many currently endure, but as part of a nationally-recognised resource that can concentrate on the work of support and care for the carers, without the constant worry of financial crisis hanging over them.

The emotional load tends to fall particularly on women. Despite the many changes in our society towards sharing of caring responsibilities, there is still an underlying assumption that men will care about their relatives, working to make financial provision for them, while women are expected to care directly for their relatives. This extra dimension of caring is not only physically exhausting but it can place a great strain on marriages and on family life when the demands from all sides become overwhelming. There is clear evidence that when the strain becomes too much carers may behave in a way that they themselves abhor: losing their temper or striking out to slap a child or an elderly person.

In order to begin to meet carers' emotional needs three things appear to be necessary. The first is a greater public awareness of what caring often involves and a recognition of both the real satisfaction and the huge stresses which often follow. There is still much that could be done in the employment field to help women and men who are carers: part-time working, flexible working arrangements and career breaks, such as are being introduced by progressive firms for maternity leave. The lack of provision for children with disabilities during school holidays is a constant source of worry for many parents, and effectively reduces their employment opportunities. For those who have to give up work in order to meet the demands of caring, the loss of status can be a difficult additional burden to bear. I would ask your Lordships to listen to these words from a consultant anaesthetist who is looking after his wife: What hurts most of all is that you appear to become suddenly a person whose opinions count for absolutely nothing. I mean, there was I, someone who had people's lives in my hands when they were on the operating table. Then suddenly no one believes what you are saying. I used to tell my sons how bad their mother was getting. I could see them exchanging glances of disbelief … and the really awful thing is that I recognise that I've done precisely the same to patients without realising what I was doing". Secondly, we need to encourage a culture of neighbourliness and friendship, where burdens are to some extent shared. It is perhaps here where the network of voluntary bodies, support groups, churches and other faith groups have most to offer. Thirdly, there needs to be proper support for carers from local social services, with opportunities for regular and reliable assistance. The resources for this are so stretched that they can only respond to a crisis, as the following two short cases from my own diocese will show.

The first case concerns a teacher whose husband has a personality disorder and who also looks after her mother-in-law. The mother-in-law is frail and elderly; she lives on her own and has many practical care needs. There is no space for her to move in with them. Complaints from neighbours have been received after the gas was left on. The carer finds more items blackened by burning in the kitchen each time she goes round. The social services do not have the resources to act "unless something serious happens".

The combined stress of looking after both relatives led to her having a nervous breakdown. The carer's GP has instructed her to stop doing tasks for her mother-in-law. She is now taking long-term sick leave and is likely to have to resign from her teaching job as a result of her own condition. She now feels that three people are in need of financial and emotional support, as a direct result of her own caring role failing to gain adequate support. How serious does something have to be before the social services can step in and offer support and help? Waiting for a crisis is much more costly, both in financial and emotional terms.

The second case concerns a 14 year-old boy who was the prime carer of his father, who died from an AIDS-related illness. After the father became ill and lost his job, the boy's mother went out to work in the evenings to support the family, leaving the 14 year-old to do most of the basic caring tasks. After a long and traumatic illness, his father died. The emotional strain on the 14 year-old seeing his father change from a large fit man to a thin and confused patient was overwhelming. However, this emotional strain was intensified by the stigma of having a father with AIDS and the fear he then faced with his friends. By the time the young man was 16 he had lost all social contact with friends and others, and he now requires psychiatric help.

When caring goes wrong the results can be serious. Carers can and do snap. The whole area of elderly abuse is a sensitive one, but it is now being recognised as a reality. Respite care and holidays are vital to help carers maintain their equilibrium and to recharge their batteries. However, respite care schemes are always at risk by local authority spending reductions. The work done by such schemes as the Crossroads Care Attendants Schemes is vital. I should also like to pay tribute to the splendid work of the Winged Fellowship which provides holidays for the disabled to enable their carers to have a much needed break. Prevention is always better than cure, and the work done to enable carers to renew their emotional and physical strength must be given a much higher priority.

I would urge the Government to put the funding of such agencies on an adequate long-term footing. The financial savings will be quickly gained but, more important still, the emotional needs of carers who bear the brunt of caring in the community will also be more readily met.

7.17 p.m.

Lord Redesdale

My Lords, I too am grateful to the noble Lord, Lord Ashley of Stoke, for the opportunity once again to raise the problems of carers. It is a topic that in many ways should receive a far higher profile than it appears to have. It is quite possible that one reason why carers do not have a high political profile is that many of them do not have the time, because of their obligations of caring, or the financial means to take up the many points that concern them. Indeed many carers feel themselves to be isolated from society. At a recent meeting of Caring Cross, an alliance of voluntary organisations campaigning for an independent income for carers, it was clear that there was a definite feeling of anger among carers that their needs were not being addressed. Certainly the percentage of carers suffering financial hardship due to their position as carers could be taken to show that we are not supporting to the extent we ought people who have devoted their lives to others, often to their own detriment.

For many carers, caring is a full-time career. The person they care for is often dependent on them and I am sure that many of your Lordships could cite examples of carers who spend their entire time looking after a disabled relative, partner or friend 24 hours a day, seven days a week and 52 weeks a year. I have a close friend with distrophic epidermylisis belosa. This condition is, in its severe forms, totally disabling. It is a condition which requires constant attention, often of a medical nature. It often seems that the entire family revolves around the needs created by Johnny's condition. Like many other carers in the same position, there is no escape for the family from the constant need for, and the responsibility of, caring. That can bring on problems of stress. That stress leads many carers to ill-health and the constant worry can bring on depression. One remedy to that problem, as has been pointed out by many noble Lords, is respite care.

I have some experience of respite care, in that I was secretary of Pendower Special Needs Junior Gateway Club. That club was specifically set up to give respite care to the parents of severely mentally and physically handicapped children. It met once a week. I have to admit that, when we took the children away for three hours, that was for some of the parents the only three hours they had to themselves in a week.

With this group, and a number of others, I have also been on various residential holidays. The most memorable was a holiday I took with the Pendower group to Jersey during which I was given the sole responsibility of looking after a hyperactive eight year-old called Ricky. I have to admit that I found Sandhurst far less stressful than a single week looking after that child.

I have taken part in the fund raising for all the holidays I have been on. They were all funded by the groups concerned. It is not an easy task for volunteer groups to raise funds. I am not underestimating the value of volunteer organisations providing respite care. I believe that the noble Lord, Lord Rix, understands better than many, through his connections with Mencap, how important the holidays are. However, I believe that government must bear some responsibility for respite care.

If carers are expected to cope, and to be able to cope, there must be time for them to get away, not from the person for whom they are caring, but from the constant responsibility for care. They must be given a break when they can have time to live their own lives. That must be provided by government. As has been pointed out, the majority of carers are not able to afford respite care themselves.

In the present environment of public spending cuts, perhaps it will seem naive of me to ask for government funding for respite care. However, without that funding, respite care will, in many cases, disappear. Local authorities may evaluate a person's need for respite care, but it is quite certain that, with the present cuts in the budgets of local authorities, money for that service will not be available, and there will be no option for disabled people to choose the type of care they require—which is a matter of great importance.

Can the Minister say whether any specific funding for respite care is being set aside by the Government? That money would enable carers to cope with their responsibilities. It would also save money in the long term because, when a carer can no longer cope, the person cared for will often end up in hospital, where beds are excessively expensive.

Perhaps I may put one last question to the Minister. Why is it that Britain is the only country in the European Community which does not give tax relief to those who fund the 24-hour nursing of disabled or chronically sick patients at home? That is unfair when one considers that, were it not for the financial and other sacrifices made by the carers who provide the service for their loved ones, those loved ones would often end up in hospital putting far more of a burden upon the state. Caring at home is a cheap alternative. However, the fact that it is cheap does not mean that the state does not have some obligation to provide funding for those who cannot afford the care that they would like to give their loved ones themselves.

7.25 p.m.

Lord Rix

My Lords, I am proud to enlist in the ranks of the regiment of the noble Lord, Lord Ashley of Stoke, for this debate. If there are not many of us in the Chamber tonight, at least we know that out there we have a huge army of unpaid and often unsung family, friend and neighbour carers—but particularly family carers—who provide most of what we choose to call community care. Dr. Maurice Ashley wrote some much-read books about the 17th century. When the social history of the 20th century is written, his namesake Jack, Lord Ashley, will figure prominently in that history as a champion of people with disabilities and of those who work for and with them.

If I may be forgiven an aside, I think it is a pity that there has been some success on the part of those who theorise about these things in dividing carers from service users; and in denying the reality that these two groups, just as they need each other in daily life, need each other in a united front on community care. United we stand; divided, there is rather less chance of standing up successfully. And I shall not apologise for using the term "carer", although I understand that "care" and "carer" are frowned on in rather more radical circles.

Where people with learning disabilities are concerned, the carers for most adults and nearly all children are primarily parents. As noble Lords will know from personal experience or the experience of friends and neighbours, for many parents whose children have severe learning disabilities, the special needs of the very early years continue into the teens, adulthood and middle life; and the caring to meet those needs runs on into the so-called retirement years of the parents.

Community care has been hailed as the great hope for elderly people. At its best, it represents a chance for people in the last decades of their lives to re-assert control over their lives; to stay in their own homes, sharing in the life of their own local communities, enjoying supported independence. How very different is the situation for those elderly parents trapped into providing care that they are increasingly less able to deliver to their own satisfaction; trapped in homes that they would long since have exchanged for more convenient homes but for their continuing role as carers; denied the chance to have their own increasing needs met because they must give priority to a son or daughter still totally dependent on them.

I have put to your Lordships on more than one occasion the argument that people with learning disabilities need the opportunity to live in homes of their own with the support that each and every one needs. That same argument applies to their parents. I have heard of a director of social services saying of elderly carers and their adult sons and daughters: "They don't want to be separated; they need each other". Two people drowning will clutch at each other and drown together. How much better if both can be rescued and supported, to survive as friends, rather than drowning in a situation which was enforced, not chosen.

Parents who see their own lives contract in retirement while their friends experience a new freedom, often just accept that as the way things are. "He is my responsibility", they say. If community care is to live up to its name, he or she is also our responsibility. That wider responsibility extends to what is still, as it was 50 years ago, the most stressful concern of all: what happens when I am gone? The Family Committee of the International League of Societies for People with a Mental Handicap met at Mencap last weekend. I know from many encounters with parents from all around the world that this is their greatest concern. We all want to see our children settled. For most of us and most of our children, that means seeing them making their own way, happily married, with homes of their own and a job that is no more uncertain than the next person's job. Sons and daughters with severe learning disabilities have few of those prospects and they and their carers share that great uncertainty.

Community care plans are beginning to put numbers on these issues, just as the personal accounts that Mencap and other voluntary bodies collect put faces on the issues. From North-West Thames region, looking across a number of London boroughs, we have recently had a "Time Bomb" survey looking at the implications for services of simply waiting until parents die, which is what I might call minimalist planning.

Central Television has highlighted the plight of elderly carers in Derbyshire. In that programme two elderly carers were specifically mentioned, Mr. and Mrs. Hopewell. Those of your Lordships who study the Scriptures—and I see that a number who do so are present in the Chamber—will be familiar with the Biblical habit of renaming people when their circumstances change for the better or the worse. How sad it would be if, on 1st April 1993, we had to rename Mr. and Mrs. Hopewell as "Mr. and Mrs. Hope-Dashed" or even "Mr. and Mrs. Hope-Indefinitely-Deferred".

Nationwide, a forthcoming study based on community care plans, in which Mencap and Mencap's New Era Housing Association partners have been involved, will be showing that instead of the current—roughly—2,000 new residential places a year, we need some 5,000 residential places a year.

I am delighted that the Department of Health has recently published Guidance on Standards for the Residential Care Needs of People with Learning Disabilities/Mental Handicap. I am a little disconcerted that the latest figures for the number of places that can be quoted in this new document relate to 1989. If I asked the Government to confirm or deny my estimate that we need to more than double the existing rate of provision of residential care for this particular group, I suspect that I might not get a very helpful answer.

If residential care for the latter group is the only means in most cases of reconciling the support needs of elderly carers and the support needs of middle-aged sons and daughters, in the shorter term we need a continuing increase in the quality and quantity of day services and respite care, as we have already heard from the noble Lord, Lord Redesdale. Both these essential services, which represent a contribution to a partnership between parent carers and the wider community, figure prominently in the guidance on community care. Both feature in community care plans. Both are, as far as I can judge, at risk of diminishing rather than increasing, as local authorities try to align their services with their resources on the one hand, and the greatly increased demands on them on the other hand.

Community care—"care in the community"—call it what one will, but comment on 1st April as the starting date has been restrained, and far be it from me to spoil that conspiracy of good manners. However, I shall note in passing that one of the customs associated with that day in times gone by was for the mighty to swop places with ordinary folk. It might be no bad thing if those who govern our destinies in health and social services swopped places on 1st April for one day with carers. On the other hand, I have the uncomfortable feeling that, while health and social services might do quite well from the deal and learn much to their benefit, the severely disabled people being cared for would not.

Despite my background in a profession where, without the willing suspension of disbelief, it would have been difficult to attract customers, I remain a realist: I do not expect anything very remarkable, for either good or ill, to happen on 1st April when the community care system comes of age—or whatever the appropriate analogy may be for two years of waiting. I set on one side the wealth of guidance and the financial initiatives, and against them the fact that many health and local authorities have done their sums and concluded that during this coming year they will be able to do less, not more. I do not believe that this dialogue of the deaf represents a monopoly of wickedness on one side or the other. I have a suspicion that the reality is that a lot of running is needed just to stand still, and that not all services will be able to maintain that status quo.

What I am sure of is that, in order to hold on to advantages gained, and to take advantage of the sound guidance that has been issued, and the good practice developed in a quiet way in many places, we need two things. The first is the full implementation of the legislation already on the statute book—not least those parts of the 1986 Disabled Persons (Services, Consultation and Representation) Act which would have given people with disabilities advocacy and assessment rights that they do not otherwise enjoy. Carers, too, would benefit from this.

The second essential is absolute clarity that people with problems need to be assessed for services; that the assessment of their needs should have nothing to do with what is currently available or with their ability to pay; and that this assessment must then be used—first to provide a basis for the rational allocation of existing resources, and secondly for the rational and informed planning of future developments. Will the Minister confirm that this is how things should be, and that this is how Ministers will insist that they will be?

I want to ask two other questions. Will the Minister say whether the number of day-service places is currently rising or falling, and by how much it is expected to rise or fall during the coming year? Will the Minister—and this is a more modest request—say by how much she estimates the provision of respite-care places for adults has risen since the OPCS study of 1986–89, and by how much she expects it to have risen by the end of the first decade of community care?

I am afraid that it is an unfortunate habit of mine to close with a quotation from the great and the good in the Who's Who sense. Let me close this time with a quotation from one of the great and the good whose name is not in Who's Who—although I daresay that it ought to be. As my noble friend Lord Ashley remarked of carers, she is human gold dust indeed. She is a widowed mother who lives in Lambeth. She said: My son is 58. He is profoundly and multiply handicapped. I have cared for him for 58 years. What will happen when I pass on? That says it all really.

7.36 p.m.

Baroness Seear

My Lords, I have already explained to the noble Baroness, Lady Cumberlege, and do so now to the rest of the House that I fear that I may have to leave before the end of the debate because I have another engagement which I entered into before I knew about this Unstarred Question.

Perhaps your Lordships will recall that quite a long time ago there was something called the Griffiths Report, which spelt out a wide and encouraging programme for community care. There was then a long, long pause during which a fierce battle was fought between two government departments with powerful protagonists on either side. The carers, whose hopes had been greatly raised by the Griffiths Report, waited and waited and waited. As they waited, their hopes grew more and more frail. We then had the community care legislation, the implementation of which was to be delayed for a further two years for carers. But in five weeks' time, that community care legislation will come into force. It is extremely important that we try to get it right. But, of course, if we have not done a lot to try to get it right by now, it is not likely to be right in five weeks' time. I suppose that there is still a chance to do something about it and, if we do not get it right straightaway, we can improve it.

The fundamental point is that we need to regard the job of the main carer as a job. It has been treated so often as if it were something that people did in the ordinary course of events, but it has not been treated as a job. Community care is a wonderful idea. It means that we should get people out of institutions and move them into the community —into nice, loving communities which, it was presumed, would be adequately financed and would look after those people. The reality is likely to be very different. If people come out of institutions and into the community, the burden of the responsibility—and the burden—will fall (if we are honest about it) very heavily on the families. If those families do not carry that responsibility, then our well-intentioned schemes to move people out of institutional life—and they were well-intentioned schemes—could turn into absolute disasters. Indeed, there is a considerable chance that they will be absolute disasters.

The great majority of families will try to do their best but, by definition, the people leaving institutions will be the least easy to cope with. The burden that will be put on the families who try to cope will be very heavy—in some cases, excessively heavy. We have been told that there are already more than 6 million carers, but they do not all carry anything like the same responsibilities.

If we are to be realistic and if we are to try to obtain the best possible services, targeted—to use the word so beloved of the Government—on those who most need them, we must recognise that among those 6 million, different levels of responsibility are being carried. The numbers carrying very heavy responsibilities are still extremely substantial. It is those in particular on whom we want to direct our attention.

The principle should be that caring is a job. As other speakers have said, if the carers—they are not all family people, of course—did not take on the responsibility for caring for people, they would have to be provided for in some other way, at government expense, in costly institutions of some kind or another. If a person is caring, that person is doing a job. If we could look at it in that way, we would treat such people differently.

It should not be taken for granted that people will do the caring. People should be given the opportunity, without feeling shame or excessive guilt, to say, "This is something I really cannot do." There must be genuine consent to take on the job of caring in people's own homes. The legislation requires that individual plans should be drawn up for people who need to be cared for. There is a danger of concentrating upon the needs of the person to be cared for. Of course they are of the greatest importance, but unless those plans also suit the person who must do the caring, the result will be pretty disastrous. No plans should be made which have not been discussed fully with the person who will do the caring. That person should be able to state what are the limits of the caring they feel they can take on.

The Carers National Association, of which I have the honour to be president, has abundant evidence to show that when carers are consulted, on the whole they ask for a great deal less than people think they will. There is a fear that if they are asked what they want they will ask for the earth. They do not. In most cases they ask for a great deal less than you or I might expect that they would. That is another reason, although a secondary one, why they should be brought fully into the development of plans. Those plans should not be more or less decided in advance. It is no good local authority representatives going along with a cut-and-dried idea as to what the provision should be. They should go with open minds to discuss matters with the person who needs help and equally with the person who has to give that help. Without that, the development of community care will be disastrous.

If we regard caring as a job, then we must look at the financial side of it. Other speakers have pointed out how expensive institutional care is. For men and women doing the job the financial burden can be heavy. It might surprise your Lordships' House to know that a considerable number of men do the job, although not as many as women. It has always been the policy of the Carers National Association to do everything possible to help carers stay in employment for as long as they possibly can. That should be the aim of all those responsible for developing community care schemes. In the longer run, that is to everyone's advantage.

In the early days, the forerunner of the Carers National Association did a survey. It asked the people doing the caring what was their greatest problem. In those days we expected that it would be loneliness or lack of money—the obvious things—but the overwhelming response was, "What will happen to me when I am old?" That is what we must bear in mind all the time. We must look at that factor when we consider the financial problems of carers. We should keep them in employment and support them so that they can, preferably, do full-time work. For many people that will not be possible. They should at least be enabled to do part-time work so that they can maintain their earnings and their pension rights, which are of the greatest importance.

We must consider the pay level of people who have to be at home full time. Other speakers have talked about the invalid care allowance. It is of course merely a contribution. It is a contribution to make up, in some way, for loss of income. It is in no way a payment for the work being done which, in our view, is what it should be. If one accepts that principle, it is ridiculous that people who start caring over pension age should not be able to draw any allowance for doing it. They are still doing a taxing, expensive, caring job. If it is a genuine caring job, there is no reason why they should be unable to receive an allowance just because they start caring at an age when it is assumed that they will not be earning.

Perhaps I may draw attention once again—we raised this point often when the legislation was going through—to the extraordinary nonsense of requiring that someone has to care for a person for 35 hours. A person may be caring for two people. A person may have two infirm, and perhaps tiresome, elderly parents to look after. We should not fool ourselves into believing that these old people are delightful dears that one wants to be with all the time. It is quite the contrary in many cases. If one is caring for two of them, but neither of them for 35 hours, one does not qualify, although one may be spending 55 hours spread over two people instead of 35 hours for one person. That is the legislation of the madhouse. What we are interested in is the length of time a person is tied doing the job and the stress involved. Two tiresome old people must be much more difficult to deal with than, one tiresome old person, unless they can be tiresome to each other and lift the burden in some way. Cannot the Government look at that matter again? It is an absurdity.

It is not just money, important though money is, and we should not underrate it; it is also support of another kind. Most speakers have talked about respite care, and of course that is important. However I have heard it said on a number of occasions that when a carer is asked, "Would you rather have a reliable night's sleep or a holiday?", that carer has said, "Give me sleep every time." Those of us who have looked after people and had broken nights, night after night after night, know full well what that means. I suspect that there will be demands for that kind of help on a large scale when we get down to discussing what carers need. That is not to say that they do not need respite care. Of course, they do. But it is not the only kind of help.

Day centres are enormously important, so that one can get rid of the elderly people for a bit. Why have we been so determined to shut local hospitals? A small cottage hospital may have a day centre where people can go. They get to know the place and the staff, and they make friends with the cat. All that matters enormously. Then, if the person has been to the day centre it is not so difficult to persuade him or her to accept respite care. If one can get the person one is looking after into a day centre once or twice a week, that makes the most enormous difference to the life of the carer. That is of the greatest importance. So is help inside the house. Domiciliary care of one kind or another is vital. The home help service provides essential assistance. If one is looking after a frail, incontinent person one needs a great deal of assistance and one welcomes some help with the running of the house. That is important. Some home helps have gone rather upmarket and are interested in counselling and all that. I am not against counselling, but for my money I would rather have someone do the washing up and clean the floor than give me counselling and helpful advice. I might get that more effectively somewhere else. It is important to have a good home help service as a back-up for those who are looking after old and difficult people.

I wish to mention briefly the emotional stress. Yes, people do it because they love their relations. But we all know that love and hate are closely linked. It is easy for love of the person who is being looked after to turn into hate—and hate is accompanied by guilt. Many people involved in caring are haunted by guilt and need a great deal of help in that respect.

Finally, when the caring is over and the person who was being cared for has died there is a frightful gap. The job may have been awful and the carer may have railed against it, but when it is finished there is for many nothing left. The problems of bereavement are then most acute. The present regulations require that people must get back to work; there is no period for recovery during which the allowances continue. I ask the Government not to break off payment immediately but to allow at least two or three months for adjustment during which the carer can draw allowances before being expected to return to the labour market.

7.51 p.m.

Lord Desai

My Lords, we must all thank my noble friend Lord Ashley for drawing our attention to this important problem. I rise—as I did on a previous occasion when my noble friend Lord Longford drew attention to the matter—as the most ignorant of all noble Lords as regards the practical details. I am amazed that a rich and caring society such as ours can get things wrong not because it is mean or penny-pinching but because it takes a particular view of entitlements. When paying out money from the state to carers we operate on a principle which is exactly the opposite of that which applies to the legal system. Our legal system states that every person is deemed to be innocent until proved guilty. When paying entitlements we operate on the principle that everyone is out to cheat the state unless that is proved otherwise. As a result we construct the most enormous obstacles, site conditions and rules under which claiming is discouraged and, if successful, is inadequate.

When the Disabled Persons Bill was passing through your Lordships' House the noble Lord, Lord Swinfen, said something that I should like to quote. On Second Reading he said: Even if one bounces a rubber ball up and down forever it reaches its own breaking point. Carers are not rubber balls; they are flesh and blood like the rest of us. There may be other strains within their family, apart from the disabled person. There are other members of the family who demand their attention and time. Perhaps they are looking after a disabled husband or child while at the same time, 30 miles away, they have a parent gradually getting older who needs more and more attention as well. Even without the additional strains, looking after one disabled person, where one is never getting a full night's sleep, brings one to the verge of breaking point. If that is allowed to happen … one would end up with two people in care: the disabled person and the carer".—[Official Report, 14/5/86; col. 1234.] Many noble Lords have described practical circumstances which are summarised in that quotation. When considering the financial, physical and emotional needs of carers one is also considering the cared-for person because they are together. I should like your Lordships to consider the problem in a certain light. Let us suppose that we had no problems of money and had no other care in the world and then ask what we would like people to have. First, we would like the carer and the cared-for to have as much freedom to lead as normal a life as possible. The cared-for person should have the freedom to choose not to be cared for by a particular carer, because not all of us like to be cared for by our nearest and dearest. The carer should have the freedom to lead as normal a life as possible, having chosen to undertake this particular kind of task.

The noble Baroness, Lady Seear, said that we should think of caring as a job which should be rewarded or supplemented. The current rules for deciding invalidity care allowance treat the carer worse than an unemployed person. Therefore, rather than treating a carer as having a job, we make their entitlements much worse than those of the unemployed. I hope that eventually—I do not say immediately because I am not as optimistic as I was in my youth—we can treat the carer on the same basis as an unemployed person because there are several advantages. If the carer were treated as a long-term unemployed person the loss of entitlement when the cared-for person dies would disappear. Similarly, one could consider the whole life-cycle of a carer taking into account the pension entitlement. It would be better to think of a carer as someone who has a low-paid job or no job at all. Treating a carer as being unemployed would be a substantial advance on the present situation.

Let us consider for one moment the current rules. There is a £50 earning limit. If a person does not make more than £50 he or she receives £33.70p. That total of £83.70p. is less than one-third of average earnings. By almost any definition it is distinctly below the poverty level. Therefore, we are saying that someone who cares for their nearest and dearest for 35 hours a week should, having chosen to do so, have a standard of living which is only one-third of average earnings.

I do not wish to encourage the Government to spend too much money—I know that they have problems—but not so much money would be involved. We must think radically about the way in which we view the carer and the cared-for. If we ask ourselves what is needed to take good care of the disabled person and what is needed to allow the carer to lead a normal life, we might have a more decent system of entitlements.

Finance is not the only problem; many noble Lords have pointed out the problems of respite care and of what happens to carers during their lives. Unemployed people are entitled to holidays, perhaps four, five or six weeks. Why should not a carer be entitled to a holiday? Why cannot we think of caring as a sub-career and not a proper career? If some of the think-tanks which always exist on the Left, on the Right or in the middle were to give radical thought to the caring and the cared-for, we might achieve a better system of rewarding the carers.

I shall not say any more than that because, as I have said, I am not an expert. However, over the long term I urge the Government perhaps to treat carers more like the long-term unemployed so that they can live lives as close to normal as possible. If we succeed in doing that, we shall have a more decent society because, as other noble Lords have said, carers save more money than they cost.

8 p.m.

Baroness Cumberlege

My Lords, it gives me great pleasure to respond to this debate initiated by the noble Lord, Lord Ashley. He, of course, has been a doughty fighter for disabled people, chairing the all party Lords and Commons disablement group for 23 years, and through his own personal courage and testimony has shown how disability can be overcome.

Although my admiration for the noble Lord's achievements is great, it does not diminish the recognition that there are others whose disabilities are so profound that no amount of courage would enable them to lead independent lives. They will always require the love, care and understanding of others to help them through their daily lives.

The Government can only provide a very broad framework to support these carers. Every carer's need is highly individual, as are the needs of those for whom they care. I believe it to be futile to prescribe a regime for carers. Some are fiercely independent. Others who are physically and emotionally drained are grateful to accept the help offered to them. Increasingly, their needs are being recognised through research and statistical data funded by the department, and through reports such as that commissioned by the Carers National Association entitled Speak Up Speak Out. I join other noble Lords in paying tribute to the organisation for this excellent piece of work and for the many initiatives stimulated by its president, the noble Baroness, Lady Seear, and its national director, Jill Pitkeathly.

The noble Lord, Lord Ashley focused his question on three areas: financial, physical and emotional. I shall address the action which the Government are taking under those headings. The main benefit for carers, as your Lordships are aware, is the invalid care allowance. That is designed to give some financial support to those who forgo the opportunity of full-time work to look after a severely disabled friend or relative. As regards the point made by the noble Lord, Lord Desai, I do not believe that we should equate that benefit with unemployment benefit. Its whole purpose is quite different. Carers are eligible if they spend at least 35 hours a week looking after someone who is receiving either the highest or the middle rate of the care component of the disability living allowance. They are also eligible if the person for whom they care receives either attendance allowance or constant attendance allowance. Carers must be over the age of 16 and under pensionable age when they make their claim. In that way provision is concentrated on those who give up work to care for the most dependent people requiring help.

The noble Lord, Lord Ashley, said that he wished to widen the scope of the invalid care allowance, as did the noble Lord, Lord Desai, and other noble Lords. I recognise that the difficulty with drawing boundaries or setting criteria is that those who just fail to be included have a strong sense of grievance but your Lordships are aware that resources are finite and need to be invested where they are used most effectively. ICA is intended for those carers who spend a substantial amount of time in providing care for severely disabled people.

The Government are not entirely without heart. They are aware of increasing pressures and have enabled a greater number of people to receive invalid care allowance. In 1978 only 5,000 people benefited; today more than 195,000 do so. There has been a similar dramatic increase in the annual amount of benefits received; that is, from £4 million in 1978 to £366 million today.

The growth in invalid care allowance has been accompanied by enhancements to other benefits. Changes made to the attendance allowance enable it to be paid, without delay, to terminally ill people, and to children under the age of two; and, more recently, the further surge in claims arising from the introduction of disability living allowance has enabled more carers to receive invalid care allowance. In addition, from 1st April the amount which a carer may earn without it affecting entitlement to invalid care allowance has increased to £50 a week. That is the fourth successive increase in as many years.

Further help is available to those entitled to the allowance who also receive at least one of the income-related benefits: income support, housing benefit or community charge benefit via the carer premium. Your Lordships may be aware that since October 1991 that premium has continued to be payable to carers for a further eight weeks after their caring duties have ceased. Furthermore, where income support becomes payable for the first time after caring ceases, the carer premium can be paid for up to eight weeks in addition. The extension of payments in this way has helped to cushion carers against a sudden drop in benefit levels at what is often a difficult time for them. As one carer said it is impossible to go from the graveside straight to the Job Centre; a period of bereavement and adjustment is essential. More recently, my right honourable friend the Secretary of State for Social Security announced that from 1st April the earnings disregard in income support for carers has been increased to £15 a week.

The noble Lord, Lord Ashley, made a plea that other carers should receive a carers pension. But carers who have had a long caring career will have credits which will entitle them to state retirement pension. Other carers will have paid contributions prior to undertaking the caring role to similar effect.

The noble Lord also referred to uprating as having a trifling impact. As the noble Lord will be aware, social security benefits were uprated in line with inflation which at the time was 3.6 per cent. Inflation has gone down which will help the poorest social security recipients. My right honourable friend the Chief Secretary to the Treasury has also announced a fundamental review of expenditure which will include social security.

The Government have tried to provide carers with the opportunity to get out and to work if they so choose—a point very well made by the noble Baroness, Lady Seear—but that desire is frustrated if local services or employers are inflexible. A good example is the case of the woman who had an afternoon job with a computer company. Her husband had a stroke and needed care. He got a place at a day centre from 10 a.m. to 3 p.m. but her working hours were 1.30 p.m. to 5.30 p.m. The inflexibility of services meant that she had to give up work in order to look after him. Flexible working hours, job shares and part-time working are recognised by good employers as necessary measures to meet the needs of employees with young children, but those who have similar needs which are generated by dependent relatives are often ignored.

Like the right reverend Prelate the Bishop of Southwark, I look forward to the day when we not only have a wide distribution of child care vouchers but also of elderly care vouchers. I also look forward to the seminar, to be held next month by my honourable friend the Under-Secretary of State for Health, for employers, voluntary organisations and statutory bodies. The purpose of the seminar is to heighten general awareness and produce useful ideas and initiatives for both employers and carers. All of the measures testify to the Government's concern to help carers. It is a record of progressive and measured improvement in the level of financial help given to them.

I turn now to health and social services support. Considerable physical demands are often made on carers and the burden is increased if carers have to perform the household tasks for themselves and their dependants. One of the key objectives of the community care reforms, which will be fully implemented from April 1993, is to make sure that local authorities and health authorities give carers support in these areas. An important objective of the reforms is to promote the development of home, day and respite services for those receiving community care in their own homes.

Local authorities will, in partnership with health authorities, professionals and other interested parties, assess individuals' needs for services and arrange appropriate provision. A combination of services which is designed for the individual may include health, housing and social services, and could involve the provision of disability equipment and adaptations to accommodation, including services provided by voluntary organisations.

We have told authorities that in making assessments, they should take into account the preferences of carers. We know that at the moment that good practice does not necessarily happen. An example which particularly comes to my mind is that of a woman of 35, who is confined to a wheelchair as a result of cerebral palsy. She none the less cares for her mother who is also in a wheelchair following a stroke. The mother needs personal care. However, they manage that between them to their own satisfaction. What they find difficult is hoovering and washing floors. That is not surprising. They asked their local authority for one hour's help with housework per week. They were unable to get this but they were offered 10 hours per week of personal care for the mother, which they do not want or need. The frustrations felt by carers in such situations are often not based on a lack of resources but rather on the inflexible and unimaginative ways in which the resources are used.

Such examples strengthen the Government's determination to make local authorities more sensitive to the needs of individuals rather than trying to make people conform to systems because "people don't, they won't and they shouldn't". Under the new Act, carers who feel that they need community care services in their own right can ask for a separate assessment. Local authorities should already be developing assessment procedures which build upon current good practice. That is well illustrated by the London Borough of Sutton who were faced with an elderly man who continually refused all help offered, though it was clear that he needed it. It was a long while before a social worker asked in frustration, "Well, what do you want?" to which he replied, "I don't want your meals on wheels, I don't want your home help, I value my privacy. What I do want is to be able to go down the Legion with my mates on a Friday night." There was no mechanism for achieving this so an enlightened director, realising that there were probably many cases like this, gave each of the five district teams a £4,000 budget to spend on achieving the hitherto unachievable. It is the Government's policy to encourage such enlightenment and we have been impressed by the effect devolved budgets can have on services.

The noble Lords, Lord Ashley, Lord Beaumont of Whitley and Lord Redesdale, mentioned the value of respite care. That is an element of care which the Government recognise is often a lifeline for carers. Just knowing that a guaranteed break is available can make all the difference between giving up or returning to the task refreshed and renewed. Our policy guidance Community Care in the Next Decade and Beyond specifically tells local authorities that their community care plans should identify how they intend to offer practical help such as respite care. These community care plans must be drawn up in concert with the local authority and the health authority working together and defining the responsibilities of each in order to meet the needs of their shared population. Of course, additional funding will be needed for local authorities to be able to provide this increase in care for those living at home. The noble Lord, Lord Redesdale, and the right reverend Prelate the Bishop of Southwark mentioned that. Some £565 million will be made available through the ring-fenced special transitional grant which will enable authorities to give more support to carers through additional respite and home care schemes.

In addition the social security residential allowance from April 1993 will be payable to people who go into residential homes for short periods. This will also help local authorities to fund respite care. So, for the first time, we will not only have reduced the current disincentive to provide respite care but we will have replaced it by a positive incentive. We look to authorities to make the most of this opportunity and thereby lighten the load on carers.

The noble Lord, Lord Beaumont of Whitley, mentioned changes in charges for residential care. He drew our attention to the fact that husbands and wives' assets may be jointly assessed sometimes to the detriment of one spouse. We recently revised the regulations concerning local authority charges for residential care to bring them into line with the generally more generous income support means test. We consulted widely before laying those regulations. Obviously we have not been able to make all the improvements which individual commentators wish to see but the new regulations will mean that most people are better off. We have given authorities discretion over some important areas for carers; for instance, how the carer's home should be treated when the carer is not a spouse or a close relative.

In addition, we recognise the knowledge and expertise carers and their organisations have in contributing to the pattern and shape of the new services. Local authorities are obliged to publish annual care plans setting out how they intend to discharge their responsibilities. For the first time ever they are legally obliged to consult with voluntary organisations who represent the interests of users and carers. This puts carers in a prime position to influence the future delivery of services. That goes some way to meeting the aspiration of the noble Lord, Lord Ashley, that carers must be respected, recognised and valued. It also goes some way to meeting the wish of the noble Lord, Lord Rix, to discontinue what I think he described as "the dialogue of the deaf".

The noble Lord, Lord Rix, asked some penetrating and difficult questions on the number of community services places and the number of respite care places. I shall have to let the noble Lord have those figures in writing. He may well have anticipated that answer. I do not think I can forecast how the services will grow in the future. The way in which local authorities in particular spend the substantial extra resources that we are making available—over £1.8 billion by 1995–96 —will depend very much on local needs and priorities for community care services.

I turn finally to emotional support. This subject was perceptively addressed by the right reverend Prelate the Bishop of Southwark. I wish to endorse his view that in some ways we are all carers. The noble Lord, Lord Redesdale, gave a personal testimony to that. As children, most of us were taught to help our parents, our brothers and sisters, and this continues throughout our lives. It is a pleasure for both receiver and giver and it is often difficult to pinpoint the moment when someone becomes defined as a carer. It is not surprising that the researchers of Speak Up Speak Out found that after 10 years 14 per cent. of carers did not recognise that they were carers. But we can recognise carers who, with enormous burdens, are still able to join community activities—people who help others and receive help themselves. But, for some who are almost housebound, it is easy to become lonely and depressed. Contact with professional workers can help, but the Government cannot legislate to ensure that every social worker or assessor is endowed with both sense and sensitivity.

That is where voluntary organisations are so important. The right reverend Prelate will be pleased to know that the Government give financial support to hundreds of organisations, many of which have established local support groups and networks for carers and are effective in providing an escape from isolation and depression. The Department of Health alone grants those organisations to the tune of £17.8 million, £2 million of which over the last two years has been given to carers' organisations.

I am aware that I have not touched on community nursing or the comprehensive programme of carer research which is being undertaken or commissioned by the Government, or indeed on the way that the information on the new proposals is being disseminated. However, before I conclude, I wish to tell your Lordships of the recent Government initiative to set up a group of users and carers to monitor and feedback to Ministers the progress being made in implementing the community care reforms. Members of the new group will act as a focal point for their area of the country and their particular client group. We shall expect to hear from them about health and social services and about services provided by the independent sector as well as the statutory authorities. The group will give us a better feel as to how we can continue to go about achieving the aims of community care.

So, in conclusion, the Government have been active in their efforts to help carers. That said, I could not claim that the role of a carer is an easy one or that we can hope to dispel overnight all the problems that carers have to contend with, many of which have been graphically illustrated by noble Lords in this debate tonight. I hope your Lordships' House will acknowledge that the Government have listened, have recognised, and are addressing the problems through their overall community care strategy, a main tenet of which is to place carers at the heart of decision making, not only for those whom they cherish, but also in influencing social policy, both local and nationwide.

House adjourned at nineteen minutes past eight o'clock.