§ Motion made, and Question proposed, That this House do now adjourn.—[Mr. Hanson.]
11.42 pm§ Mr. Nigel Waterson (Eastbourne)I begin by welcoming the Minister to his new role. I am grateful for the opportunity to highlight the problems faced by my constituent, Margaret Edwards, and others, who, as lone carers, work hard to look after their disabled children at home. Paul Edwards is totally immobile, and suffers from severe cerebral palsy and epilepsy. He requires constant care. Margaret has devoted a large part of her adult life to caring for him, and has sought available assistance by presenting the compelling facts connected with Paul's needs, rather than merely complaining about the very difficult situation that she and Paul face daily.
I think that we would all accept that the birth of a child lays a responsibility on the parents. Equally, it can be easily accepted that, if a child is severely disabled, the parent's responsibilities become much harder to meet. How much more must that be so in the case of a parent who has to care for a disabled child alone.
Margaret Edwards's plight, sadly, is not unique; but it is true that many people in her position might feel, with some justice, that they could not avoid putting their child into some form of permanent institutional care. Margaret Edwards has resisted that option throughout the 19 years for which she has cared for her son, but circumstances have made her choice increasingly unsustainable. I have been doing what I can to assist Margaret and Paul since I entered the House, and have seen at first hand the tremendous efforts that Paul's mother has made to offer him something approaching a normal existence.
At every stage, Paul's mother has made great efforts, on her own, to keep Paul at home and to give him proper care. I corresponded with Motability, and, although progress was made, Margaret Edwards sacrificed her existing car, which meant that she could no longer collect friends to see her and Paul, and took out a loan to purchase a vehicle capable of taking a wheelchair and occupant without transfer. She could only afford an older vehicle, and it has generated its own costs and problems. We worked together to seek timely assistance from the local social services department, and I pay tribute to the devoted staff there.
By the time Paul was 16, he weighed the same as his mother—nine stone—and Margaret Edwards found it increasingly difficult to deal with the average number of 33 lifts that were required each day to cater for Paul's needs. Special adaptations have been made to Paul's home, but it has always taken time, and carers like Margaret find it increasingly difficult to wait—sometimes for years—for practical support of that kind.
I am keen for the House to consider the plight of my constituent, not least because—as Margaret has acknowledged—she is not in a unique situation. We know that many families are held together by the largely unsung work of carers. The Carers National Association has advised me that there are an estimated 5.7 million carers throughout the United Kingdom—about one in eight people. The majority of those carers provide limited assistance, but some 1.7 million provide 20 hours of care or more a week. 277 To highlight the position of Margaret Edwards, it is worth recording that the number of carers who care single-handedly has increased over the past few years, and that more than a third of carers carry out their task without outside help. As I have said, there are a considerable number of lone carers, and they deserve our special attention.
Paul is now 19, and has left school. Although his school years were also difficult for his mother—especially during the long holidays—the problems, particularly financial, have worsened considerably since Paul entered adulthood. It is likely that, if he were not severely disabled, he would be preparing to leave home and make his way in the world; his mother would be able to take up full-time employment again, if she wished, and broaden the scope of her life with new pastimes and a wider circle of friends. All that is denied to both Paul and his mother.
Although Paul attended a day centre, its working hours are less than normal school hours. Margaret Edwards found herself in a grim "Catch 22" situation. Because of her caring role and the fact that Paul will never be able to support himself, she was unable to work enough hours to earn enough to be fully independent and get off income support. Indeed, when she had to have an operation and go into hospital, and was thereafter recuperating, after four weeks her benefits were stopped, and her income was reduced to £40 a week. She also discovered that she was not entitled to respite care for the ensuing two years.
In the past, the Government have expressed their desire to review the social security system, with specific regard to provision for disabled people and their carers. Unfortunately, my correspondence with the Department of Social Security and others on Margaret Edwards's behalf leaves me concerned that the special problems experienced by lone carers may be overlooked. Indeed, a number of ministerial answers contain suggestions that go very little way towards appreciating, let alone addressing, the needs of lone carers.
One suggestion was that Paul might benefit from the social fund towards one-off expenses that he might need to meet. Most expenses that are associated with Paul's care are certainly not one-off. Carpets must be replaced frequently, and special bedroom and bathroom equipment purchased, most of which will probably have a definite life span.
One of Paul's particular needs was for an adjustable bed. His mother approached the social fund for support. I am glad to say that help was forthcoming, but Margaret was told that the fund did not normally provide finance for such equipment, and certainly not for items costing more than around £500; it is worth noting that specialist care equipment is very expensive, and physical adaptations will often be required to the carer's home to ensure that it is safely installed.
However, what carers mainly want is not charitable handouts, although any help is appreciated. Rather, lone carers such as Paul's mother would prefer to have a benefit and tax system that supported them in their desire to seek employment, where possible, and to lead normal, or near to normal, lives, while at the same time maintaining responsibility for their dependent relative.
Carers relieve the state and the rest of society of much cost and responsibility: the state is saved an estimated £34 billion a year as a result. A recent study by London 278 Economics found that small changes in the number of carers could have a profound economic effect. The same study found that, with increasing opportunity costs of caring, fewer people were likely to care, but we all have a responsibility to people such as Margaret Edwards, who give up their lives to care full time for disabled and sick relatives.
Returning to the suggestion that applications to the social fund, for example, address anything other than limited short-term needs, I quote from a letter sent to me by Margaret Edwards:
As for applying to the Social Fund each time Paul or I need `extras' for the home, this is precisely the point carers are trying to make, and which the Government continue to fail to understand. We are NOT unemployed people, and do not want to spend the rest of our lives living off charity. We want to be given full recognition, with a recognised wage, consistent with the work we do, and the actual costs of our disabled relative's needs and cost of special equipment, as well as our quality of life (or rather lack of it!)Lone carers such as Margaret face additional problems, which are faced by anyone dealing with a difficult domestic situation on their own. As I have described, she literally cannot afford to fall ill, or fail in her commitment to Paul. It will no doubt be said that schemes of respite care are available that should enable Paul to receive adequate care while his mother takes a break, but the reality, certainly in East Sussex, is that respite care centres are often called on to deal with admissions, perhaps in the mental health sector, which cause a shortage of space for people such as Paul, and may create an unsuitable environment for young disabled people.
Respite care that might be available only once every few weeks is not sufficient to give Margaret Edwards the support she needs. In her case, the weekend placement had at least once to be cancelled without notice because of a problem involving another client at the respite care home.
It appears that, although carers as a whole deserve increased support, the position of lone carers vis-a-vis couples does discriminate against the former. The earnings limit for single carers on income support and invalid care allowance should be the same as that for married or partner carers who are not in receipt of income support, but do receive invalid care allowance.
I am frankly humbled by the fortitude and hard work that is shown by carers such as Margaret Edwards. We must remember that such carers relieve society of an enormous administrative and financial burden. Such carers do not seek rewards—merely the tools to do the job that they often willingly take on for themselves and their loved one.
What should be done to help? The Department of Health has talked about a national strategy for carers as part of a broader assessment of the working relationship between health and social services. Such a strategy, if properly resourced, would enjoy wide support among carers and hon. Members on both sides of the House. Lone carers' particular difficulties should be considered at the outset of any such policy discussions. I look forward to hearing from the Minister that any public consultation arising in this sector would be as thorough and wide-ranging as possible.
Such a strategy would add little to the lives of people like Margaret and Paul Edwards unless it sought to focus resources more closely towards areas of need, and 279 succeeded, for example, in cutting the average waiting time for special care equipment such as beds and commodes. Such a strategy should also address the need for greater co-ordination between the agencies and professionals with whom both carers and cared for have to deal. That could help further focus resources towards those most in need.
The psychological costs of caring must be reduced by increasing the number of short-term breaks for carers, ensuring that less time is spent organising care, by having more seamless support systems and easier access to that support and improving benefits for carers. The whole question of financial support for carers should be examined. Put more appropriately, the current financial disincentive to be a carer, particularly a lone one such as Margaret Edwards, must be addressed. Margaret Edwards says:
I feel particular notice should be given to the differences between a lone carer and a family where there is a full-time wage earner as well as the main carer. Almost all of my problems could have been resolved far quicker. and with much less stress, had I not been so dependent upon the current social security system.My constituent wanted to help herself and care for her son. Let us help to make that hard task easier, and so acknowledge in an appropriate way the great sacrifices made by all carers.Sadly, any new steps taken to create a carers network or to focus more clearly on the inequitable position of lone carers will come too late for Margaret and Paul Edwards. In a letter dated Monday this week, Margaret tells me that, because of her own poor state of health, she has been forced to take the step that she has fought for so long to avoid—she has had to put Paul into a residential home. As she put it so poignantly:
I am being very cruel to him, in trying to keep him at home. I just do not have the money to give him a life outside these four walls. From when he comes home from the day centre, he becomes a prisoner in his own home.Because of the lack of suitable local facilities, Margaret will face an 86-mile round trip to see Paul, and is already worrying about the costs involved. Margaret's feelings of helplessness are summed up clearly when she says:'Normal' children are able to visit their parents from time to time. For Paul and I this is not an option. They also have the knowledge that their children are capable of letting them know how they are. I will still have all the emotional trauma that will undoubtedly be there, not knowing if he is being cared for properly, and the knowledge that he is unable to inform me of his feelings. In short, I have to put my complete trust in his carers.All Margaret Edwards and other carers want is adequate recognition for the work they do and the necessary support to carry out their labour of love. Lone parents deserve our particular support, and I ask the Minister, on behalf of Margaret and Paul and many others, for that support.
§ The Parliamentary Under-Secretary of State for Health (Mr. John Hutton)I congratulate the hon. Member for Eastbourne (Mr. Waterson) on his success in securing time to debate this very important subject. I am particularly grateful for his kind words of welcome at the beginning of his thoughtful and constructive speech.
The Government value the role that carers play. We recognise that they play an important part in the fabric of our society. One in eight adults gives informal 280 care and one in six homes has a carer. As the hon. Gentleman correctly said, that means that there are nearly 6 million carers in the United Kingdom today
Carers fulfil a vital role in helping relatives or friends and, without their support, many disabled or elderly people would lose the chance to stay in their own homes or with their own families. Caring is something that touches us all. Most of us will have had some experience, either in our own family, or through friends or colleagues, of illness and disability. We therefore know some of the difficult decisions families face and can appreciate the great responsibilities that carers like Margaret Edwards undertake over long periods of time.
On a number of occasions, the hon. Member for Eastbourne referred specifically to the circumstances in which his constituents, Margaret and Paul Edwards, find themselves. It might be helpful if I make one or two remarks about the case to which he has drawn our attention.
East Sussex social services department has agreed a substantial package of support services for Paul and his mother. As the hon. Gentleman said, the services include attendance five days a week at a day service centre, three nights a week of respite care, a Crossroads sitting service and domiciliary care provided in response to requests from Mrs. Edwards. A social worker has been allocated to the family, who I think has—I stand to be corrected by the hon. Gentleman—developed a very good working relationship with the Edwards family.
Equipment has been provided and adaptations have been made to allow Paul to live at home. He has a wheelchair and a specially contoured bed, and ceiling tracks have been provided to lift him in and out of bed. An application by Mrs. Edwards to extend that system to the bathroom, to replace the hoist currently in use, is being considered by the social services department.
The examples that I have given show that the East Sussex social services department has already provided a range of help to Paul and to Margaret, and 1 am sure that the department will continue to consider sympathetically any additional requests for help from them.
Most people do not plan to be carers. Moreover, many people who provide care regard themselves not as carers but simply as people providing the love and comfort that comes naturally to them. It is a role that arises from mutual bonds of family, duty and affection, sometimes at significant personal cost to carers themselves.
In recognising the contribution of carers, we should not ignore the fact that families and carers can sometimes feel over-burdened, unaided and unsupported in their task. Government and statutory agencies clearly have a responsibility to listen to carers and ensure that the right support is available for them at the right time. That is why, on 10 June 1998, my right hon. Friend the Prime Minister announced that he was asking the then Under-Secretary of State for Health, my hon. Friend the Member for Brent, South (Mr. Boateng) to lead a Government-wide review of measures to help carers as part of a national strategy for carers.
The objective of the national strategy is to bring together a range of initiatives designed to address carers' concerns and to give them support. The strategy's terms of reference include drawing together existing work within government that impacts on carers; taking account 281 of the emerging findings of the royal commission on long-term care; and assessing whether any key needs have been overlooked.
The hon. Member for Eastbourne has raised the issue of social security benefits and of how the rules and regulations concerning those benefits impact on the lives of carers. I shall specifically address those issues in a moment. First, however, I should like to reassure the hon. Gentleman that we wish to ensure that there is across Government an integrated approach to carers. The strategy is building on work that has already been done in the past 18 months to strengthen links between Departments on carers' issues and is also maintaining a meaningful dialogue with carers' organisations.
I was concerned at parts of the hon. Gentleman's speech, when he seemed to imply that all the problems that carers are now experiencing date from 1 May 1997. They do not. The previous Government had 18 years to deal with some of carers' particularly pressing concerns, and conspicuously failed to do so. On 1 May 1997, the new Government began to start addressing those issues.
The national strategy for carers is built around ensuring that carers' concerns are no longer ignored. Our approach is both inclusive and flexible. The Government are involving in our work on the issue carers' organisations, carers themselves, recipients of care, representatives of the statutory services, various Departments and people from industry and commerce.
On 30 July, my hon. Friend the then Under-Secretary of State chaired a meeting of Ministers from Departments with an interest in meeting carers' needs. That was the first ministerial meeting ever held specifically on carers' needs. Ministers decided that, within the strategy, work will be undertaken on four specific themes: respitex2014;to which the hon. Member for Eastbourne referred; employment issues; community networks; and meeting health needs.
Working groups to examine each of the four themes have now been established and have all met at least once. The groups each include representatives from key stakeholder groups. Additionally, however—to capture the views of an even wider range of people—next week, there will be in London a full-day UK consultative conference at which we shall discuss how the needs of carers might be better met. Those invited include Ministers and other representatives from both this House and the other place; people from both national and local carers' organisations; representatives of local government; industry and commerce; representatives of religious and ethnic minority groups; and—most important of all—individual carers who have written to tell us about the issues that concern them most.
I deal now with social security benefits and the national carers strategy. The strategy will be taking a critical look at all aspects of invalid care allowance and the other benefits that support carers in their valuable role. We will want to see what is currently available, how well the benefits meet the needs of carers and what changes may be appropriate for the future. It is too early to say what the results of that examination will be, but we expect to include any proposals in the strategy's consultation document. I assure the hon. Gentleman that that consultation process will be wide and meaningful.
282 Nevertheless, social security benefits already make a substantial contribution, whether directly or indirectly, towards informal care. As well as specific provision for carers in their own right through invalid care allowance—which will, incidentally, exceed £830 million in 1998–99, topped up, for those less well off, with income-related benefits—in excess of £24 billion goes towards the income replacement and extra costs needs of long-term sick and disabled people.
Despite that level of spending, there are undoubtedly unmet needs. That is why my right hon. Friend the Secretary of State for Social Security recently announced the latest stages of the process of reforming the welfare state. The Government are determined to help disabled people, and, by extension, those who care for them, especially where the carer and the cared for live in the same home, as is the case with the Edwards family.
We want to help disabled people get back into work. To achieve that, we have announced our intention to modernise incapacity benefit, so that it provides information on what people can do, not what they cannot do, and to help people plan their return to work.
We also intend to introduce a single work-focused gateway. It will help sick and disabled people and their carers consider opportunities for work through personal advisers and a common entry point for all benefits. That will help to improve the service that we give our clients and help them avoid benefit dependency. At the moment, too many claimants experience duplication and confusion. We need to tailor our services to provide a more personalised and professional service and seek to help people become more independent. Obviously, if a carer's duties are particularly onerous, an immediate focus on work would be inappropriate, but we do not intend that people will lose access to their personal adviser.
Also, we are going to provide security for those disabled people who cannot work. We will focus that help on those in the greatest need by introducing the disability income guarantee—a new increase in income support for those severely disabled adults and children with the greatest needs. We expect that some 145,000 adults and 25,000 children will benefit from the disability income guarantee from April 2001. We shall also be reforming the severe disablement allowance so that it provides greater help to those who become disabled early in life, and we shall be extending to children aged three and four the higher rate mobility component of the disability living allowance.
In conclusion, the strategy will be ready for consultation early in 1999. We already know from the research available to us and from the many letters that people send us that carers' main needs are the means to have a break, recognition of the importance of their role, reliable and satisfactory services, relief from social isolation, and information.
I thank the hon. Gentleman for raising some very important issues, both for carers and for those whom they care, and for the constructive tone of many of his remarks. I assure him that his views will be fed into the strategy process. If we, as a Government, can help to meet the needs of carers, then we shall have succeeded in making a very important contribution to improving the quality of life of many of our citizens.
§ Question put and agreed to.
§ Adjourned accordingly at eight minutes past Twelve o'clock.