§ Order for Second Reading read.9.33 am
§ Dr. Hywel Francis (Aberavon) (Lab)
I beg to move, That the Bill be now read a Second time.
I am proud and privileged to present to the House my Carers (Equal Opportunities) Bill. In doing so, I believe, as everyone does in the House, that the personal is the political. At the outset, I should record my appreciation of the great cross-party support that I have received, as represented by my excellent Bill team, and the enormous support outside the House, in particular from Carers UK and Carers Wales, which have been a constant source of encouragement and professional guidance, representing as they do the voice of 6 million carers in this country.
Over the past two months, I have benefited from discussions with the Under-Secretary of State for Health, my hon. Friend the Member for South Thanet (Dr. Ladyman), the carers Minister, and his officials. I know he has some issues and concerns, and I look forward to his response today. I have also benefited from encouraging support from Jane Hutt, the Welsh Assembly Minister for Health and Social Services, and her officials.
On 25 June 2001, in giving my maiden speech, I spoke of a journey of hope, from social exclusion to social justice, for people with disabilities and their carers. I made a pledge in that speech to work on their behalf. I begin on that personal note because my wife and I were carers for over 16 years of our son, Sam, who had Down's syndrome and who died nearly seven years ago. In common with millions of carers, the experience profoundly changed our lives.
The day after the private Members' Bill ballot was 5 December—national carers' rights day. On that day, I met a group of young parents of children with disabilities, through the Neath Port Talbot carers enablers project. I saw in their faces and heard in their voices the same mixture of anxiety and hope that Mair and I experienced nearly 24 years ago. Those parents are beginning a journey of hope. We need to give them the resources of hope to sustain them on their journey.
1016 That moment with those young carers confirmed for me what we had felt for a very long time, and I am sure that many in the House today share this feeling: carers need a life beyond their caring responsibilities. That is what the Bill seeks to achieve.
Carers UK defines carers as those in society who look after family, partners or friends in need of help because they are ill, frail or have a disability. The care they provide is unpaid. That is the definition for the purposes of the Bill. There are 6 million carers in the UK, amounting to 12 per cent. of the population. Heavy-end carers—those providing more than 50 hours of care per week—have increased in number to 1.25 million. My own local authority area, Neath Port Talbot, has 22,000 carers. They account for the highest proportion of carers in any local authority area in the UK. Similarly, Neath Port Talbot has proportionately the greatest number of heavy-end carers in the country. In part, that is a legacy of the heavy industries in my locality.
I believe that a society is defined by the way it cares for its carers. I believe, too, that the labour of love provided by carers defines that society. Today, we are acknowledging that carers should have equality of opportunity to have a decent life in our society. We are building on the firm foundations provided by many national and local carers' organisations as well as recent legislation supported by many parties and successive Conservative and Labour Governments.
My Bill is not an exercise in a top-down central Government approach. It has grown from previous enabling legislation and the hopes and aspirations of carers, carers' organisations and statutory bodies, particularly in health and education. This growing tide from below—from outside Parliament—was summed up for me in an e-mail I received this week. I shall quote a substantial part of it:I very much support this Bill.I am a carer of my son who was diagnosed with a mental illness and has been in hospital care for over 5 years. From the start of that period I have had great difficulty in getting information from the statutory services or any consideration of my needs as a carer in support of my son. In helping my father-in-law to care for his wife who suffers from dementia, it is my experience that the needs of the carer within social services are only considered as they directly affect the care of the user of the service… The cost of this legislation, if any, will be more than offset by the benefits to the people accessing services. I am also a member of the Board of Directors of a Primary Care Trust and I know that within my own Primary Care Trust there is support for the needs of carers and the PCT would support the aims of this Bill and Clause 5 in particular. Our Board also includes a member of the local district council who also supports the needs of carers. I hope you are successful in getting past the Second Reading and beyond.
In my constituency of Aberavon—as elsewhere—we are blessed with a wide range of excellent carers' organisations, a supportive council for voluntary service, and in Neath Port Talbot county borough council, a progressive local authority. That can be replicated in many parts of the country with organisations and sectors supporting the Bill.
§ Ms Debra Shipley (Stourbridge) (Lab)
In my constituency, the Government have made money available for various matters related to carers. Unfortunately, the money for the last couple of years has been used mainly for researching projects. Carers have told me that they are concerned that that money
1017 may be freed up within the council for it to spend as it wants and will not necessarily be targeted directly at carers, who obviously need it. Does my hon. Friend support my calls for any money for carers to go specifically to carers, rather than being dissipated across the council?
§ Dr. Francis
My hon. Friend makes an important point, and I support her on it.
The roll of honour of local carers' groups in my constituency includes the epilepsy support group, the autistic spectrum disorder support group, Crossroads, the council for voluntary service, with its enablers project and parents and carers forum, Age Concern, the cancer carers group, the Down's Syndrome Association, and SNAC—the special needs activity centre. SNAC plays a special role for local young carers in providing play, recreational and educational support services for all children and young people with special needs and their families. In many ways, its work captures in microcosm what this Bill seeks to achieve across the whole of England and Wales.
I now turn to the purpose of my Bill and the principles that underpin it. For the first time, it looks beyond the specific needs of carers as carers, and asks how we ensure that the health and well-being of carers is enhanced by securing equal opportunities for them beyond their caring responsibilities?
For me, the Bill seeks to tackle three problems. The first is the lack of opportunities that carers may have because of their caring responsibilities. The second is the lack of information that carers have about their rights. The third is the lack of focus on their health and well-being.
§ Linda Perham (Ilford, North) (Lab)
In relation to what my hon. Friend said about availability of information, the Redbridge carers support service has written to me to say that it has contact with nearly 800 people in my constituency who are missing out on benefits, services and other support because they have not had the information. I know that there is existing guidance under previous legislation, but I hope that the Bill will improve on that so that information is available for carers.
§ Dr. Francis
My hon. Friend is absolutely right. The Bill addresses that question centrally.
The three problems that I have mentioned are simple but vital matters which, if overcome, would make such a difference to so many carers. Most of the change is about attitude and culture. It is about valuing carers and their role, not hiding them away, pretending that they do not exist, or feeling that because they are caring away we do not need to worry about their health or their well-being.
Before I start to go through the clauses, I want to set out the position that carers' rights have reached today, and pay tribute to the many Members of the House and Members of the other place, from all political parties, who have furthered carers' rights. First, there was the Carers (Recognition and Services) Act 1995, another private Member's Bill, which was promoted by the 1018 Minister for Pensions, my hon. Friend the Member for Croydon, North (Malcolm Wicks). That Act established for the first time in law the principle that a carer could request an assessment of their ability to care. It gave all carers that right, irrespective of age—whether a young carer aged 11 caring for a parent with mental illness, the parent of a child with severe disabilities, or a woman looking after her elderly parents. The Bill went through with Conservative Government support.
The second important piece of legislation was the Carers and Disabled Children Act 2000. With Labour Government support, it was guided through the House by the former Member for Stalybridge and Hyde, now Lord Pendry. It established the right for a carer to request an assessment of their ability to care even if the disabled person refused an assessment. It also gave local authorities the power to provide services to the carer, as long as they were not intimate services for the disabled person.
§ Mr. Andrew Dismore (Hendon) (Lab)
I well remember the debates on that Bill, and I think that I spoke in support of it—on one of the many Fridays on which I come into the House. I recall that when I was researching for that Bill, I was staggered by the number of children and young people who are engaged in caring responsibilities. It struck me that we had to do a lot more to support that group of people. I am sure that when my hon. Friend comes to describe his Bill, which I wholeheartedly support, he will refer specifically to how to help young people and children who take on such amazingly difficult responsibilities.
§ Dr. Francis
It so happens that this specific Bill relates to children or young people over the age of 16, but my hon. Friend makes a very important point.
The Carers and Disabled Children Act 2000 opened up a new degree of flexibility for local authorities, which some, like Hertfordshire social services, have used to spend the carers grant. The Act also introduced vouchers for breaks, so that local authorities could have flexibility and direct payments for carers, so that they could buy their own services rather than have them provided for them.
Finally, there was the Community Care (Delayed Discharges etc.) Act 2003, which was improved by the Government, with the support of all parties, and gave carers new recognition at the point of hospital discharge.
What those Acts do not do is see the carer as a whole person. The previous Acts, landmarks though they were, do not recognise that a carer might have or need to have a life outside caring, and that they need to balance such family responsibilities. For example, both Acts talk aboutassessments of the carer's ability to provide and continue to provide care".Any services have to be provided which willhelp the carer to care".And carers must be upfront and know about their rights if they are to exercise them. Even provisions in the Community Care (Delayed Discharges etc.) Act 2003, important though they are, talk about providing the carer or patient with services that make it safe to 1019 discharge the patient. Nowhere in current legislation do we establish the principle of equality of opportunity for carers.
We do not make it easy for carers to know about their rights, as we have heard. Nor do we view their health and well-being as important. And yet, as a country, we are thoroughly dependent on the support provided by carers. Their input has been estimated at a staggering £57 billion per year—equivalent to the spending on the national health service. In many ways, they are the alternative national health service.
I now want to move on to the detail of the Bill under each clause. The Bill, as we see from the title, focuses on equality of opportunities for carers, and this is achieved mainly under clause 1, which I will take a little time to explain. My aim in including this clause was to set a new principle for carers. We know from all our constituents that carers face multiple barriers in accessing the sorts of things that most people take for granted: work, leisure, learning and training opportunities. These barriers exist because of their caring responsibilities—because they are responsible, by default, for the care of a disabled, frail or chronically ill person. We know that they often cannot leave the house unless they feel that the person for whom they care is safe.
A few of the barriers that carers face in attempting to return to work include: the difficulty of finding alternative care while they attend courses or go to work; the need to make care decisions that directly and negatively affect the carer's ability to work or attend college; and stereotyping by social services, which do not always see carers as needing to have a life outside caring. Assumptions are made all the time that carers should not be working or be on courses, but should be caring for the disabled person.
§ Mr. Hilton Dawson (Lancaster and Wyre) (Lab)
I am sympathetic to what my hon. Friend seeks to do, but I want to tease out a little more the point that it applies to young people only if they are over 16, which he made earlier in response to my hon. Friend the Member for Hendon (Mr. Dismore). A host of issues relate to children of all ages who take on caring roles in relation to parents and siblings. Can my hon. Friend the Member for Aberavon (Dr. Francis) say something about why the Bill does not apply to children under 16? Whether one regards it as in their best interests or not, such children often end up with substantial caring tasks.
§ Dr. Francis
I anticipated such a question and have been reflecting on the answer. The issues that my hon. Friend raises relate more to the Children Act 1989. Although I would like to have a revolution, what this matter is undergoing is more in the nature of evolution, and my private Member's Bill is tackling a very specific issue relating to adults. However, I endorse his point.
We know from research that the carers who provide substantial amounts of care are the most likely to be working part-time or to be out of work. Many have given up work in order to care. Carers have told me of their particular experiences, and in one case, a simple change to the days on which an older woman attended a day centre meant that her carer lost her job.
How would clause 1 help? As with similar duties in the draft Disability Discrimination Bill, local authorities would have to examine their policies and procedures to 1020 see whether they included barriers to carers' having the kinds of opportunity listed and whether, by changing their practice, they could remove those barriers. Clause 1 would make social services departments think very carefully about how their policies and procedures impacted on carers and their ability to access work and training opportunities. They would have to look at their assessment procedures for carers to ensure that they explored work and training issues, and internal training programmes for staff would have to emphasise the need for carers to have opportunities.
Clause 1(1) contains an important principle. We want to move away from seeing a carer as a client to seeing them as a person with a life that they need to combine with caring. Barriers for other groups are fully recognised, and it would be inconceivable to suggest that disabled people, women or people of a different racial origin should not have the right to equality of opportunity. The drafting of the clause draws heavily on several pieces of legislation, including section 14 of the Learning and Skills Act 2000 and the Northern Ireland Act 1998, as well as the draft Disability Discrimination Bill.
I do not believe that there would be significant costs attached to the provision. I have examined the explanatory notes on the draft Disability Discrimination Bill, which contains a much broader clause. Those notes say that most public authorities already carry out such exercises to comply with the Race Relations Act 1976. If similar disability legislation is forthcoming, the costs of the exercises that I have outlined this morning will be negligible, because they will simply be routine.
Local authorities have welcomed clause 1. Commenting on my Bill, the executive responsible for adults and community care in Surrey said thatthis is an important step forward in getting the full force of the law behind something that Surrey has been developing for several years.
§ Linda Perham
I am glad that my hon. Friend has mentioned costs, which are a concern, and perhaps concern the Government. However, does he not agree that the better health and employment prospects that might be realised by carers as a result of the Bill might well offset any costs?
§ Dr. Francis
My hon. Friend is absolutely correct, and I shall address that point several times during my contribution. The Association of Directors of Social Services and the Local Government Association have been in discussion with me through Carers UK. They believe that costs to them from the Bill would not be an issue because what it would achieve in changing the practice and culture surrounding carers, and in improving standards, would be much more significant.
If we take the approach of making services more flexible for carers who want to go into education or remain in work, we will do ourselves a favour economically, as my hon. Friend the Member for Ilford, North (Linda Perham) said. British Gas has written to me in support of the Bill, and has told me that it introduced positive employment policies for carers some years ago. It knows from carers in its work force just how difficult it can be to juggle work and care when 1021 there is not flexibility of services. One of its employees, Tony Camp-Bell, who works in Southampton, has said that one of the main reasons why he can remain in work is British Gas's flexibility, which has allowed him to adapt his working hours to fit in with his caring responsibilities. However, not all carers benefit from such enlightened employment policies, and they all need the assurance that their employment needs will be taken into account by social services when making decisions about support.
I understand that there are some concerns over clause 2. My main aim in including it is to ensure that there is a robust planning mechanism behind the provision of information for carers. I see it as important for local authorities to look at information provision for carers strategically and to work with health bodies to deliver that information. Such a mechanism could be an important conduit for information about benefit rights and forms of support that exist outside statutory provision.
Clause 2 is drafted to fit with the language used in the Local Government Act 2000. However, I understand that there are some concerns over the clause, which I am willing to discuss if my Bill is fortunate enough to proceed to Committee stage. Nevertheless, I remain keen for health bodies, in particular, to plan for and help in the delivery of useful information to carers. We would never let a nurse administer medication without knowing how to do that or how to deal with serious side effects. Why, then, do we let carers struggle on without such vital information?
§ Mrs. Angela Browning (Tiverton and Honiton) (Con)
Clause 2 is very important. All too often, carers stumble across information simply by accident, perhaps because someone has said something, or they have happened to read about it. As Members of Parliament, when we come across such cases, we wonder why on earth someone who has already been in touch with that carer has not given them that information; however, there is no statutory requirement for that to happen. The hon. Gentleman is right to emphasise the possible cost difficulties, but there must be a way to make progress on this matter. Not getting information is one of the biggest problems for carers, who often find that information that could have helped them was out there, but that no one had the responsibility to tell them about it.
§ Dr. Francis
I am grateful to the hon. Lady for her support on that matter. I am sure that if she is a member of the Committee at the Bill's next stage, she will support me on that point.
§ Ms Shipley
Looking at the last couple of words of clause 1(2), "leisure opportunities", may I again mention to my hon. Friend the younger people whom some of our hon. Friends have already mentioned? I am sure that all hon. Members present, on both sides of the Chamber, are very concerned about those young people. Leisure opportunities for young carers are virtually nonexistent and I feel that there are many places in your Bill where the needs of young carers could be introduced, perhaps in Committee. Will you undertake in Committee to consider the issue of leisure opportunities for young carers?
§ Mr. Deputy Speaker (Sir Alan Haselhurst)
Order. Before I call the hon. Member for Aberavon (Dr. Francis) to reply, I would point out to the hon. Member for Stourbridge (Ms Shipley) that she used the second person, but these things have nothing to do with me. She started well, but then she slipped.
§ Dr. Francis
I would certainly wish to incorporate the valuable point that my hon. Friend mentioned.
The aim of clause 3 is to ensure that carers get information about their rights in a more consistent way. This would mean that, around the time of the community care assessment, a potential carer would be informed of their rights by word of mouth, or by a leaflet, for example. Guidance published under existing carers Acts states that carers should be offered information in this way. However, the evidence suggests that information about assessments is not provided systematically to carers. The most recent social services inspectorate report stated that it should be, however, and that is consistent with every other Government report on carers and information about their rights. It is also consistent with Carers UK's research.
The National Autistic Society told me that a major consequence of the failure to provide effective support for people with autistic spectrum disorders is the additional financial and emotional burden that falls on carers. Caring for a person with autism can place enormous pressure on a family. The society's 2003 report, "Rights in Reality", found that more than half the respondents were not aware that they were entitled to a carer's assessment from their social services department.
The provision in clause 3 has been tried and tested. The wording has been borrowed extensively from legislation that is already in force in Scotland and Northern Ireland—another example of the way in which devolution works. Effectively, I am seeking to extend the benefits of legislation that carers in Scotland and Northern Ireland have to carers in England and Wales.
I have considered the matter of costs carefully, and have received advice from the Scottish Executive. Many local authorities already produce information about carers' rights, use other organisations' materials, or use the Department of Health's leaflet. Many, but by no means all, publish information on their websites. Enough information on carers' rights already exists for local authorities to link to it easily. It is therefore unlikely that there would be any costs involved in the production of information.
As I have already mentioned, the Scottish Executive have already implemented similar legislation. This was supported by the Association of Directors of Social Work. The Executive concluded that the legislation was unlikely to lead to a large increase in carers' assessments. They based this on a report entitled "Focus on Carers", which found that only one third of carers wanted some practical support, and that most of this could be dealt with outside the statutory sector. Since the implementation of the legislation on 1 September 2002, monitoring systems have been put in place to track 1023 progress and developments. To date there is no evidence to suggest that social work departments have been inundated with requests for assessments. Although the carers grant in England is no longer ring-fenced, spending will increase to £125 million, with further increases in 2005–06. In theory, those funds are available to improve services for carers and fund information programmes, even if the Government cannot direct local authorities as to how to use the funds.
What impact would the provision of information have on carers? The perspective of the carers whom I have spoken to is very clear. They rate information as one of their top priorities. They cannot understand why they are not told automatically about their right to request an assessment. Obtaining information about rights is the first step for a carer towards getting support at the right time, if they choose to do so. One carer providing more than 100 hours of care per week told me:Now I know what it is, I know that if I can't cope, there is somewhere I can go to ask for help.I hope that this part of the Bill will lead to carers having more choices about how to live their lives.
I turn now to clause 4. The barriers to equal opportunities for carers span many boundaries. My aim is to ensure that social services, as the lead authority, get the support from other vital authorities in order for the Bill to work effectively. One problem that carers face is that they are often passed from pillar to post. Local authorities say that they find it hard to engage other authorities. The drafting of clause 4 is based on section 27 of the Children Act 1989, which organisations have found very helpful in terms of working together.
§ Mr. Dai Havard (Merthyr Tydfil and Rhymney) (Lab)
I would like to return to the question of younger people. The Library research paper on equal opportunities for carers shows that there are 97,500 carers under the age of 16—that is the official figure. My hon. Friend has just touched on the point that social services have responsibility for such people, but in many cases these days, social services and education services are being brought together in local authorities because people are beginning to understand the point that he is making in the Bill that the co-ordination of different organisations that have worked in silos in the past gives them power without necessarily incurring a great deal of extra cost. I understand why some people are not caught by the Bill at present, but can he see a way in which his co-ordination arrangements could incorporate some of those people?
§ Dr. Francis
My hon. Friend makes an important point, and I would certainly support it in the continuing discussions that will take place on the Bill.
Housing has been highlighted as a vital issue. One case that came through Carers London highlights this point perfectly. A woman was discharged from hospital into unsuitable housing. Her son, who was ready to go to college, had to leave in order to help her to move around her flat. She has now been rehoused and he is considering going back to college, but this has happened only after a year of negotiation. My Bill could have helped the situation for that young man caring for his mother.
1024 Clause 5 deals with the co-operation of local authorities and health bodies. There are two important principles set out in the clause. The first is the issue of working together. The second is the issue of focusing on the health needs of carers as a specific group. I want to ensure that there is good joint working—and shared responsibility for joint working—on aspects of this Bill. The Bill would create many good opportunities for good joint working. The NHS often does not see carers as part of its responsibility, although in some areas of good practice it does.
The second part of the clause focuses on carers' health. Statistics show that carers are more likely to suffer from ill health than non-carers. One Carers UK survey found that half of the carers providing 24-hour, seven-day-a-week care had suffered a physical injury as a result of their caring responsibilities. We have to ask ourselves how many of these injuries could have been preventable, had carers been given the right advice. Some carers have had to give up caring because their health has broken down. That is why I have included the second part of this clause, which would place a duty on health bodies to promote the health and welfare of carers.
§ Mr. Dismore
Does my hon. Friend's reference to health include safety as well? I know from my previous life as a lawyer just how many professional carers, such as nurses, still suffer far too many injuries—through lifting and moving patients, for example. Will the Bill ensure that carers who are not professionals receive the training that they need to be able to move the person that they are caring for without risk to themselves and, equally importantly, without risk to the person being cared for?
§ Dr. Francis
Yes, the Bill will give consideration to that issue. At present, the promotion of the health and welfare of the population is covered by section 22 of the National Health Service Act 1977. That provision is fairly broad, as it gives health bodies a duty to promote the health and welfare of persons. Clearly, this would include carers. However, this is translated as a duty of care to patients. That lack of specificity is causing carers a problem. Except in terms of good practice, the NHS does not generally regard carers as important or see why it should promote their health unless they are patients or become ill. My Bill seeks to change that.
Let me say something about costs. The activities envisaged in the clause include the provision of information for carers, moving and lifting training courses, anti-stress courses and health checks. I understand that some people fear that the clause duplicates existing provisions. I have canvassed a number of views on that, and would be willing to discuss them in Committee.
Let me end by referring again to the breadth of support and good will I have received, inside and outside the House and in the other place. It would be invidious to mention some organisations and exclude others, but I want to refer in particular to some of them simply to illustrate what they can do to enhance the health and well-being of carers in the future by means of the Bill.
I begin with employers British Gas managing director Mark Clare has written stating the company's firm support for the Bill. I have also heard from 1025 BT on behalf of Centrica, HSBC, Listawood, the Metropolitan police, Nestor Healthcare and PricewaterhouseCoopers. Caroline, Waters, director of People Networks, BT and chair of Employers for Carers wrote to me:We support the Bill as being beneficial to business and the economy, and would like to offer any help you believe would forward the Bill and improve the inclusively of the employment proposition.I have also received warm support from representatives of local government—from the Local Government Association, the Association of Directors of Social Services and from my own local authority. Mr. Colin Preece, director of social services, has told me how much his team of care professionals have been encouraged by a Bill that gives proper status to carers in his locality. I have also received a very supportive letter from Mr. Sandy Blair, on behalf of the Welsh Local Government Association. He raised concerns relating to costs which I hope will be allayed by what I have said today and by subsequent discussions.
A wide range of national organisations supporting carers have expressed support, including the Alzheimer's Society, Crossroads—Caring for Carers, the National Autistic Society, Help the Aged and the Parkinson's Disease Society. I want to mention two others in particular. The Stroke Association's motto—"Caring for today, researching for tomorrow, working for change"—could be adopted for the Bill. Its parliamentary officer Peter Bainbridge wrote to me:The Stroke Association supports your Bill as it will ensure that the vital work of carers in England and Wales is recognised and rewarded and that support is given to help them lead a more fulfilling life beyond their caring duties.The Children's Society, also supporting the Bill, raised a number of crucial issues faced by young carers in relation to their education.
I have received vital messages of support from a range of major educational and guidance bodies that would be critical in providing lifelong learning opportunities for carers through e-learning and flexible learning. They include the Open University—which has long campaigned for and worked with carers—the Guidance Council, the new NHSU and the adult learners' body NIACE—the National Institute of Adult Continuing Education—which sent an enthusiastic message of support. I should declare an interest as its most recent national vice-president. NIACE wrote:Lifelong learning can provide a chance for people with caring responsibilities to gain new skills and knowledge. Already carers saved the public purse millions of pounds a year and continuing education can help them become even more effective in their role. In addition, learning can help carers maintain their own employability for the future. Quite apart from that, educational opportunities can offer a much-needed respite break from the demands of care provision.It went on:The adult learning advocacy body, NIACE, wholeheartedly supports this Bill. NIACE is aware of colleges, universities, local education authorities and voluntary organisations which have developed learning opportunities for carers. By giving local authorities statutory duties in this field, we can ensure that the best are joined by the rest.
1026 The TUC recently highlighted the impact of carers lack of employment opportunities on economic inactivity in its report "Full employment—the next steps". Its general secretary, Brendan Barber, wrote to me:The role of unpaid carers in the UK is often undervalued. This Bill will ensure that important opportunities for carers to access lifelong learning are at least recognized. The TUC sponsors this Bill.
Given that this is an equal opportunities Bill, it was gratifying to receive support from the Equal Opportunities Commission, and from my friend Dr. Kevin Fitzpatrick, disability rights commissioner for Wales.
It is appropriate for me to conclude with the words of a carer at the public launch of the Bill. Lynn Coleman, from my constituency, spoke for all carers when she said:carers and their families are not making great demands. They just want an ordinary life outside of their caring role, something which is often taken for granted by many people. The people we care for, be they children, very young or older adults, they are special to us, but we still want the opportunity to have a life besides caring. With more information, appropriate specific childcare facilities, opportunities to work, lifelong learning and leisure, could be dramatically improved. This fulfilment would then mean that a carer can return to their caring role refreshed and ready to continue.Those are modest requests, and it is our duty to respond to them. The Bill deserves to succeed; the Bill will succeed.
§ Mrs. Angela Browning (Tiverton and Honiton) (Con)
I congratulate the hon. Member for Aberavon (Dr. Francis), and wish his Bill every possible success. We have seen legislation relating to carers in the past, but what strikes me is that although there is a process out there, it does not translate into action.
For those with responsibility for caring for someone—such as the hon. Gentleman—it is tempting to fill in the forms, tick the boxes and sit back and wait to see what happens. When my local authority started sending me—as a carer—forms asking me to identify my needs, which was certainly a step forward, on three occasions I wrote in large letters across the form, "If my son's needs were met, my needs as a carer would be much reduced." So much that affects carers is reflected by the package of care received, or not received, by the people for whom they care. Carers may spend years fighting to secure the package to which those people are entitled; that in itself adds to the stress and strain of the caring responsibility. I hope that as the Bill progresses we will not lose sight of the fact that the needs of the individual with a disability, or with other caring requirements, must not be overlooked.
I entirely agree with what the hon. Gentleman said, particularly about information, which I mentioned briefly in an intervention. All too often, we encounter what is almost a jobsworth attitude. I do not think that that is necessarily because the people involved with a carer or the person being cared for are themselves uncaring or inconsiderate; but everything has become so compartmentalised. The health professionals who deal with the family will have one set of responsibilities—clearly, they are to the fore—but we need a much more holistic approach.
1027 Whether we are talking about the individual concerned or the carer responsible for that individual, we should consider the term "well-being", which, although somewhat nebulous and difficult to enshrine in statute, I hope we all understand. What matters is the well-being, in a holistic sense, of such people; indeed, that term encompasses many aspects of the Bill. They need little windows of opportunity in their daily lives to do all the normal things that everybody else does.
The House will be aware that I have a particular interest in autistic spectrum disorders. I recall talking to a group of young parents whose children suffered from autistic spectrum disorder. We discussed the issues that concern parents of children with autism, and the services available to them in my constituency. One young mum said, "It is so difficult, because of course, with autism, you can't take the child into an unfamiliar environment." Parents cannot simply drop such children off with grandparents or others who might look after them for an evening, while they go out for a meal. Indeed, it is quite difficult having strange people coming to the house to baby-sit, because such children need familiarity and people who understand them.
The conversation with that young mum was really rather moving. She said that her mother-in-law came to stay, and that the autistic child actually got on quite well with her. The mother-in-law baby-sat one night, in order that the parents could go out for a meal. It was the first time that they had been out as a couple on their own for nine months. She said, "We went out to dinner, and we sat there with a lovely meal in front of us. We looked at each other and, frankly, we just did not know how to start a conversation with each other." To me, that encapsulates the concept of "well-being" as it affects that family. For younger parents in particular, who, in addition to that caring responsibility, have other children to look after, the pressure on their marriage is enormous. Social services, health professionals and everybody who comes into contact with such people in making carers assessments need to look beyond the obvious needs and consider the question of well-being in a more holistic way. We all know that family breakdown and the pressures that people come under in such circumstances can lead to major crises. At that point, the statutory services have to intervene to give support.
I hope that the hon. Gentleman's Bill can reach out and ensure that an overarching look is taken at carers' needs, informing carers of their rights and looking at matters in a very practical way, as he outlined so well. In terms of the needs of those who have the opportunity to work for one or two days a week, the practical details of the carers' needs should be dovetailed. For example, if someone has the opportunity to attend a day-place for one or two days a week, we must ensure that that marries up with the carer's needs on those specific days.
The fact is that, if we consider carers' needs from a practical point of view, this is not rocket science; it is simply common sense. Indeed, it is rather sad that we need to introduce a Bill to try to implement measures that ought to be implemented as a matter of course. After 12 years as an MP whose constituency casework involves a wide range of disabilities and the needs of the frail and elderly, I am still shocked to discover that a carer has not been made aware of a particular benefit, service or support group. The hon. Gentleman mentioned a very impressive list of charitable bodies, 1028 which we all recognised, that support the Bill, yet I often encounter people who have been diagnosed with Parkinson's or Alzheimer's, only to find that they have not even been given the name of their local support group. The provision of such information does not have huge resource implications; it would not cost the NHS or social services budgets an arm and a leg. The problem is compartmentalisation in respect of individuals who have a particular job to do. They do that job, but they do not think outside the box and consider that such information would be useful. I hope that the Bill will address the practicalities of overcoming that problem, which can indeed be overcome.
§ Mr. Patrick McLoughlin (West Derbyshire) (Con)
Everybody respects my hon. Friend's personal experience of this matter, but does she agree that providing support for a family so that break-up does not occur constitutes not an expense for the state, but a great saving? Moreover, it is also a lot better for the individual being cared for.
§ Mrs. Browning
My hon. Friend is absolutely right. We come back to that rather nebulous phrase "well-being". Well-being does not present itself as being of critical and urgent importance. All too often, in terms of the services that we provide—including those that carers themselves need—unless there is a crisis, nobody feels that they need do anything, but unless we look at this issue differently crises will increasingly occur. Apart from the resulting human misery, the cost to the public purse is enormous, as my hon. Friend suggests. We should do anything that we can to avoid such situations occurring in the first place.
Of course, the difficulty is that social services and health authorities work to national budgets. It is a big leap forward to say, "Spend a little bit today to avoid spending a huge amount two or three years down the line," because such a view does not focus on this year's budget, and it is this year's budget that people concentrate on. That is how the funding structure works at both national and local level, which makes it even more difficult to take a holistic view, and to take into account well-being.
As the hon. Member for Aberavon mentioned, the statutory services—nursing, say—have very clear guidelines for very good reasons. For example, there are now clear rules for professionals who have to lift somebody who is in bed, or assist them in getting in and out of bed. Those are common occurrences for carers, but one is not allowed to lift someone in and out of bed alone: two people must be present to do the job. But as we all know, desirable though that is, at home it is a practical impossibility. That creates a huge health risk for the carer concerned. Often, very elderly people have to look after even older relatives. It is really quite frightening to see people who are themselves frail lifting others in and out of bed unaided.
There are practical things that could be done to help. Apart from instructions on the safest way to assist somebody in and out of bed—for the patient's sake and that of the carer—there are practical measures such as turning sheets. Such sheets are put into the bed, and help a carer swing the person round and get their legs over the side of the bed. It is very simple: it is a large sheet of plastic that eliminates the need to take the initial weight 1029 as one lifts somebody in and out of bed. There are many such devices, but such information is never disseminated to carers; again, it seems to be reserved for the professionals. There is a lack of thinking outside the box.
All these initiatives could make a huge difference, but we should note that, at its heart, this Bill is an equal opportunities Bill. It is important to recognise that, as extraordinary as it sounds, there are people who are working as carers—sometimes for many hours a week—who do not realise that they are carers. My own son is 32, so I have been his prime carer for 32 years. It has become a way of life and one has dealt with the situation for many years, almost since day one, so one does not think of oneself as a carer. Caring simply becomes an integrated part of one's family's way of life.
I remember, on being elected to this House at the age of 45, attending some of the excellent meetings that we have had with the Carers National Association. It asked me to do something. Its people said to me, "As you are a carer yourself…"That is absolutely true: I was 45, but I had not realised until they said it that I was a carer. It is something one does; it is part of one's way of life. Others, of course, do not have that experience, but subsequently become carers. With elderly people in particular, there is a deterioration in health and well-being, either mental or physical, and frailty creeps up on them. It is obvious when someone has a stroke or accident, leading to a significant change in their circumstances. The caring role is clear, but it is still important that those needs are addressed.
All too often, however, many people—particularly the elderly—are caring for someone who is getting frailer and frailer by the year, so the caring need becomes greater and greater, but they do not realise that they have a caring need themselves. It almost becomes a way of life. In those circumstances, the statutory bodies that have contact with those people—GPs, district nurses, Benefits Agency staff—should think outside the box.
I hope that, in the context of the Bill, those people will see that they can do something extra that will make a difference. What is the Bill all about? It is about making a difference for the better. It would be wrong for me, a carer, to say that carers expect the state to do everything—of course we do not. We love and cherish the people we care for, and we always will. Whatever the state does or does not provide for us or the people we look after, we will always have that loving care for them. My gosh, though, in many cases, help can make a big difference to the quality of life and the ability to carry on caring where people might otherwise feel that they could not cope any more.
I wish the Bill Godspeed. I hope that it will gain support—I am sure it will—on both sides of the House. I shall do everything that the hon. Member for Aberavon asks to assist him. He hinted that he had invited me to serve on the Committee.
§ Mr. Tom Clarke (Coatbridge and Chryston) (Lab)
It is always a great pleasure to follow the hon. Member for Tiverton and Honiton (Mrs. Browning), who speaks with personal knowledge of these issues. We all know of her interest in autism and how she has put her experience to good use, not only in her own circumstances, but to the advantage of many people, including those who will be affected by the Bill.
I am sure that the hon. Lady would want me to begin by sincerely congratulating my hon. Friend the Member for Aberavon (Dr. Francis) on introducing an excellent and comprehensive Bill, which has remarkable support. I also congratulate him on his outstanding speech and the clarity of his presentation, so that no one was in any doubt about what the Bill is designed to do or its impact on carers in his own constituency and throughout England and Wales.
In warmly congratulating my hon. Friend, may I, in the spirit of non-partisanship that we experience in the House on Friday mornings when we debate private Member's Bills, briefly explain why a Scot should be present this morning firmly supporting a Bill that applies to England and Wales? First, I am a Member of the United Kingdom Parliament and I accept my responsibilities as such. Secondly, I have for some time had an interest in the issues that my hon. Friend has raised in his excellent Bill, which dovetails with my Disabled Persons (Services, Representation and Consultation) Act 1986, to which I shall return. I want to see carers in every part of the UK enjoy the respect and support to which I believe they are entitled. In that spirit, I fully support my hon. Friend's Bill.
My hon. Friend was generous enough to refer to the Scottish Executive, and he, like me, welcomes their consideration of the Bill, which they broadly welcome. Carers UK argues in one of its papers that in Scotland we are perhaps a little ahead of where the Bill can take us, and that might be true. Equally, it has been argued that if the Bill were enacted—we all hope that it will be—it would take this House a little ahead of Scotland. I do not object to that and think it is a compliment to how we deal with our constitutional affairs. I welcome this House building on best practice introduced by the Scottish Executive in legislation for England and Wales. If we go further than the Scottish Executive and they want to emulate us, then that is better still. That is why not only Carers UK but Carers Scotland and, interestingly, Carers Northern Ireland strongly support the Bill.
The Bill is very good because it takes on board the problems and challenges that carers face—every hon. Member knows about those problems. It is about equal opportunities because many carers are being unfairly denied opportunities, and it seeks to put that right. The duty to promote equality of opportunity for carers takes us to many fields. I was delighted when my hon. Friend the Member for Aberavon referred to lifelong learning, which is extremely important. We, as a society, should not sit back and say that carers should simply focus on the disabled person whom they are looking after without taking on board the fact that carers are also entitled to a life for themselves. Carers may have responsibilities in their families and communities, and they certainly have responsibilities in their own relationships, and every clause of the Bill endorses that view.
1031 The duty to tell carers about their right to an assessment is, of course, extremely welcome. Hon. Members have already said that every carer does not necessarily know about that right, but they should. I have always wanted the rights of people with disabilities and carers to be assessed. I welcome the clause that provides the duty to plan information delivery for carers to local authorities.
Like my hon. Friends, and as somebody with a local authority background, I welcome the priority that most local authorities give to those matters, and it would be wrong to say otherwise. There are, of course, resources problems, but in my experience, local authorities have been taking their responsibilities seriously during the past decade, and the Bill seeks to give them statutory help in ensuring that information delivery—what carers can achieve and the help that they can obtain—is made available to carers.
The Bill refers to the duty to promote and safeguard the health and welfare of carers, which is profoundly important. Over the years, I have been slightly distressed by the view taken by consultants in the health service in various parts of Great Britain. Some, but not all, of them have said that measures of this kind add to what they would describe as "bureaucracy" within the service. Nobody would deny that there is a lot of bureaucracy within the NHS, but anything that gives the health service the right to recognise the problems of health care for carers, including the inevitable stress and mental health problems, and allows our health service to deliver, take on board and respond to the pressures on carers is right for not only carers, disabled people and families but the health service. It costs a lot of money if carers reach a point at which they simply cannot cope any longer, because that places even more demands on the limited resources of the health service. Therefore, I welcome that aspect of my hon. Friend's Bill.
The Bill also refers to the duty on local authorities to work with social services and other departments. Experience shows the wisdom of including such a provision in the Bill. We tend to think that such issues are a matter for social services in England and Wales, and for social work in Scotland. However, the needs of carers can be interdepartmental, because they can include housing or education. How often do people come to our surgeries and tell us that all they want—all that represents happiness for them—is a walk-in shower? There then follow numerous letters and telephone calls. We all want to see cross-departmental co-operation, with a one-door approach, that would lead to happiness for people in such situations. The Bill will assist in that, and it is right that, helpful and positive as local authorities are, that should be brought to their attention in statute.
My hon. Friend referred to the reports that he has received of the Bill's reception. I was not surprised and nor was he—and I think that the House will welcome this intervention—to discover that on the issue of employment, several organisations, but principally the TUC, have welcomed his Bill. Given that we have accepted that carers have the right to feel that they, too, can seek employment or training, or to earn more money than they do at present, the TUC should be congratulated on its progressive thinking. For example, there are problems in some areas of the country in our manufacturing industries. The carers themselves clearly 1032 support the TUC—and, by implication, the Bill—on the issue of employment. Carers UK has written to Members of Parliament about the Bill, and it says:According to research by Carers UK, 6 out of 10 carers providing substantial amounts of care, had given up paid work to care… In the same research, 7 out of 10 carers found themselves financially worse off since becoming a carer.That is profoundly unfair. The document continues:A recent Social Services Inspectorate Report shows that carers stress the value of being able to go out to work… 80 per cent. of carers are of working age.Let us consider the advantages to the carer and to the disabled person of the carer having a job. In some cases, it might be a part-time job, but it still means that the carer can talk with colleagues or confide in friends at work and return to the home rejuvenated and able to take on the task of caring renewed and refreshed. The task of caring can be enhanced if the TUC case for more training and employment opportunities for carers is accepted.
I also welcome the views of the Employers' Forum on Disability. My hon. Friend gave the names of several companies that see the need for the Bill and accept the sheer common sense of ensuring that carers have an opportunity to work, and to contribute to and enrich society.
Perhaps because of my own experience of Bills of this nature—although my hon. Friend brings the situation up to date—I turn to the issue of implementation. I know that my hon. Friend the Minister is sympathetic and will almost certainly reply positively to the representations of my hon. Friend the Member for Aberavon, but I wish to offer my hon. Friend the Minister my support in his efforts—which I know that he will make the minute the Bill is enacted—to ensure that it is implemented, clause by clause. My hon. Friend the Minister will understand why I say that. I do not wish to dwell on my Act—the Disabled Persons (Services, Consultation and Representation) Act 1986—because it was introduced a long time ago, but even today, only half has actually been implemented. I have been told by Secretaries of State from various Governments that they have introduced legislation that transcends my Act. I did not take that view at the time, and I do not do so today. Therefore, if the Bill is enacted, the campaign for implementation—led, I suspect, by carers themselves—will proceed apace. We want to see the health service, local authorities, employers, and everybody who can make life that bit better for carers, exercising the responsibilities contained in the Bill.
The Bill is, above all, about people, and the presentation of it by my hon. Friend the Member for Aberavon certainly underlined that. We can all tell stories of moving cases in our constituencies that demand a practical response. Mencap is among the many organisations supporting the Bill and has done a fine job on the issue. It recently published a document called "Breaking Point", and the leaflet that advertises it includes some case studies. For example, we can all think of constituents in circumstances similar to those related in "Mandy's story", which reads:The day I reached breaking point, I broke down in front of my kids. I told them, 'I just can't take this any more. I have to go.' Can you imagine how scared they were?I was ready to walk out on them all. I had hurt my back lifting Natasha, and I just physically and mentally could not go on.1033 Happily, that lady received help, although it might not have been sufficient or have matched the help that she will get when the Bill is enacted. The leaflet also tells "Emily's story":One morning my husband turned to me and said, 'You know caring for Duke is going to be a lifelong commitment, and I just can't do it.' He said it was him or Duke, our disabled grandson. The day I had to make that choice was the hardest day of my life.
I know that the House is very keen that people should not be placed in a position where they are forced into making those choices, into tearing relationships apart, and that, to the contrary, we want to give positive support to those carers, who have, as has been said, saved the Treasury so many billions of pounds in seeking to do what they all seek to do in a loving relationship.
Before I conclude, I should like to ask the Minister how he considers that the impact of direct payments is influencing the way in which we, as a society, are dealing with the problems of carers. If it is not possible for him to reply this morning, he may wish to write to me. When I was leading for the Opposition and facing the right hon. Member for Richmond, Yorks (Mr. Hague), I had the pleasure of working on the various stages of the agreeable Bill that became the Community Care (Direct Payments) Act 1996. That measure was widely welcomed. Thanks to that legislation, even setting aside the role of social services and the NHS and the other public bodies, if people, particularly those living in rural areas, where there is still a great deal of poverty—very often, as we know, poverty and disability equate—felt that those services were not readily available, direct payments gave them the chance to purchase that package of care. All the evidence is that the legislation is working, and working well. I simply ask the Minister, when he gets the opportunity, to tell us his Department's thinking in terms of its impact on carers, because they were very much in our mind during the passage of that legislation.
Given that in supporting the Bill we are arguing for access for carers to health services that are necessary, to support that is necessary from local authorities and others and to leisure, work, education and those vital learning opportunities, I want to end by referring to a family in my constituency, in the mining village of Crowood. Mary and Albert have a son, Gerry, who is now approaching his fifties. Albert had spent most of his days as a miner. In the last decade or so he has developed a fairly serious heart condition. Gerry attends an adult training centre. But when Albert requires hospital treatment, it becomes very difficult indeed for the necessary respite care to be provided so that Mary can visit Albert in hospital and so that that little family unit can continue in as normal a way as possible.
My hon. Friend the Member for Aberavon has told me that many of his constituents are present today, and I think that we all welcome that. When my own Bill was passing through the House I invited Mary to come and listen to some of the proceedings. While she was here, she showed me her arm, and I saw that from her shoulder to her fingertips, the whole arm was absolutely black as a result of years of lifting and caring for Gerry. It is for people and families like that that I welcome the Bill today. I again congratulate my hon. Friend on his 1034 vision. I know that many people will rightly continue to call it Sam's Bill. It deserves success and I am sure that my hon. Friend will achieve just that.
§ Tony Baldry (Banbury) (Con)
I congratulate my hon. Friend the Member for Aberavon (Dr. Francis) on introducing the Bill and compliment him on the way in which he did so. He said in his introduction that it was a journey of hope. I suppose that most of us, during the time we are privileged to be here, entertain a genuine hope that wherever we sit in the House, we can help take people from social exclusion to social justice, and I am very happy to be able to support the Bill.
Carers are essential to the community. Carers look after family, partners or friends who are in need of help because they are ill, frail or have a disability. The care that they provide is unpaid. Without carers, social services would be under even more strain. But without being given every opportunity to access their rights, carers are put under considerable strain themselves. The Bill would remedy that. I understand that the Government support much of this excellent Bill and I very much welcome that. I understand that the Opposition also support the Bill. I understand that the Government want some further qualification of clause 5 and other minor parts of the Bill, and that Ministers have said that they will consult on those over the next six weeks. As we have heard, the Bill seems to command universal support from all those concerned, including employers, from HSBC to PricewaterhouseCoopers, the Local Government Association and very many others, who have signed up to support the Bill drafted with the help of Carers UK.
As the right hon. Member for Coatbridge and Chryston (Mr. Clarke) tellingly said, if the Bill passes into Committee it is crucial to consider carefully how it might best be implemented. As he said, all too often we see private Members' Bills enacted only to have the frustration of their not being implemented, and our constituents do not always fully understand that. I hope that the Minister will be able to address that point when he responds, because implementation is crucial.
Carers are growing in number. The 2001 census found that there are now some 6 million carers throughout the UK. That is a staggering 10 per cent. of the population—12 per cent. of the adult population. There are about 1,000 carers living in north Oxfordshire and I suspect that my constituency is pretty typical of most constituencies. In Cherwell district it is expected that there will be a 50 per cent. increase in the number of people aged over 65 by 2021—something like 15 per cent. of the population—and retirement age is the point at which many of us will move towards being increasingly in need of some form of care. But of course, as we have heard in today's debate, caring is not only about the elderly. Far more attention must be given to caring for children and, for that matter, carers who are children.
In anticipation of the debate, I got in touch with the Banbury carers centre, an excellent carers centre, which started to be funded a number of years ago with money that came in part from the Princess Royal Trust for Carers. I asked whether the staff of the centre would help me. I prepared a questionnaire, and on my behalf they 1035 sent it to 1,000 people in the constituency who they knew to be carers. It was an enormous survey, so that people were able to respond in total anonymity, and of the 1,000 questionnaires sent out, 200 were responded to. That was a pretty good sample of those known to be carers.
I had asked 15 questions. I asked the carers for whom they were caring, what contact they had with social services, what information they received from social services, whether anyone at any point explained to them their rights as carers or explained to them community care legislation, and finally whether there were any other issues of concern to them as carers locally. So that was a pretty extensive survey, of a large number of carers with a fairly typical experience of caring.
What struck me about the responses to every question was their unanimity. To almost every question, I got the same response from practically everyone who replied. I of course point out that some carers strongly supported the work of Oxfordshire social services. Carers who did get some help from the authorities praised the quality of that help. However, the reality is that fewer than 2 per cent. of the carers who responded to my questionnaire had received any, or adequate, help from social services, and even in the cases where carers had said that they received good help from social services, it was often to assist them in getting the benefits to which they were entitled from other agencies. That at the very least suggests that even those carers fortunate enough to have the help of social services were failed by other parts of the system.
It is likewise fair to suggest that the minority of carers in receipt of help from social services to cover all—I emphasise, all—of their needs are looking after a relative with many, varied and complex needs. For example, one carer explained the excellent help that Oxfordshire social services were giving to his 80-year-old wife, who is sufferingadvanced stages of Lewy's Body Dementia, breast cancer; has had four mini-strokes, cannot walk and has to be fed and taken around in a wheelchair".Of course that is the sort of case where only social services could help, and they clearly have a statutory responsibility to help.
Carers locally are telling me that when social services do not have a clear statutory responsibility to assist, they are left on their own. No one explains any of their rights to them. No one gives them any information about taking a break; no one from social services tells them how they might look after a relative or friend coming out of hospital; and no one offers to explain community care legislation to them. Carers' rights are not explained to them. That is what 98 per cent. of typical carers under a typical local authority told me.
Given such an overwhelming thumbs down for social services' communication, my next question of how readily information was received became somewhat academic. I was particularly perturbed by the lack of information given to carers about basic benefits to which they could well be entitled, and especially the carer's allowance. It is extraordinary how most carers found out about the allowance. Usually they were told by relatives, friends; sometimes by their GP. Some of them read an article about the allowance in the press or spotted a leaflet in their local post office. One carer, 1036 whom I knew, even heard about it from another mother on the maternity ward. Very often, carers find out about the allowance because they are told by a fellow carer. As my hon. Friend the Member for Tiverton and Honiton (Mrs. Browning) said, all too often carers have to brief other carers.
That makes some sense, but I am truly staggered that only one person out of the 200 who replied to the questionnaire told me that they had received information about the carer's allowance from the local social services. That means that a carer is as likely to learn about the allowance when giving birth in hospital as she is from the local authority. These are carers who are known to the carers centre in north Oxfordshire, not carers who are almost forgotten and left on the fringes of society, as some must certainly be.
Somewhat disturbingly, three carers who responded asked, "What allowance?", "What is carer's allowance?" and, in capital letters, "Never heard of it." That carer's known to the carers centre are oblivious to the carer's allowance demonstrates the extent of the challenge ahead and the need for the Government to implement the measures in the Bill as speedily as possible.
It is clear from my survey that north Oxfordshire carers would know nothing about their rights and benefits if it were not for the carers centre and other local charities such as Mencap and Age Concern. That is not to say that social service do nothing. Oxfordshire county council has a number of online publications available to carers, such as the fair access brochure on benefits and the "better care, higher standards" booklet. These are good, clear guides but the problem is that they are only available online. They are not getting out to most carers. That was indicated by the fact that fewer than a dozen carers responded to my survey by e-mail. Many carers do not have internet access. That goes back to the social exclusion point that was made by the hon. Member for Aberavon (Dr. Francis).
§ Mr. Huw Edwards (Monmouth) (Lab)
I am sure that we have all listened with great interest to the results of the hon. Gentleman's survey. Does he not think that the results demonstrate that there is a need for a national survey of the services received by carers to ascertain whether the pattern is nationwide?
§ Tony Baldry
I am sure that that would be welcome. I was genuinely surprised by some of the responses to my questionnaire. A national survey would be extremely helpful.
I note that on its website the county council stresses the importance of word of mouth. It is right to do so. Word of mouth is incredibly important. Surely it would be better, however, if carers were systematically given information about their rights, including their entitlements, so that they could make informed decisions and choices in their lives.
That brings me to the other crucial aspect of the Bill. The measure would ensure that social services and health bodies positively consider carers' health, in the broadest sense. It would ensure that carers are given more opportunities in leisure, education, training and employment. That is what all carers need. That was what almost all carers brought to my attention when I asked what other concerns they had about caring. 1037 Two specific worries are especially prevalent. The first is that the carers allowance stops at retirement age. I have a handful of carers' comments. One says:Carers allowance is only paid until state retirement pension is received. The claimant remains eligible but no actual payment is made. Thus the older you become, the more help you need, the less you receive.Another carer explains:We live in rented accommodation and after 17 years of retirement our savings are insignificant—therefore by caring for my husband at home I, and many like me, are saving the health services a great deal of money but because I receive a pension of £43 I am disqualified for carer's allowance.That seems crazy. The idea that retirement diminishes someone's caring responsibility is absurd. The burden of responsibility often becomes higher and harder.
It is not only the elderly who are unfairly penalised when it comes to benefits. Parents at the children's respite care home in Banbury, Sycamore house, tell me that even those parents who receive the highest level of disability allowance for more than one child receive only one carer's allowance. It is set against the parent, not the child, even though it is the child who is really the beneficiary. Moreover, invalid carer's allowance is not even a mandatory benefit for parents with disabled children. It is monstrous that carers, and those for whom they care, are penalised if they have more than one care need. That is not even to touch on the staggering complexity of the benefit forms and the difficulty of negotiating the benefit system, which further penalises people.
The other central concern of carers is respite care. Respite care needs take many forms. One carer outlinedthe lack of respite care and long term planning, tailored to help in times of family emergency.Another explained how
there is not enough respite care available unless your child is so severely disabled they cannot do anything for themselves.A more elderly carer told me thatmy main concern is that respite becomes less when my husband reaches 65 years old, which is this year. This will make things more difficult and may result in having to put my husband in residential care.Surely at least allowing the opportunity, as the Bill does, fully to assess the availability of care in the home would be a better option.
Respite care is often about simply having contact with other carers and other organisations. One carer says:I would like to be contacted now and again to see if there's any help needed and not to be forgotten by everyone, feeling alone and isolated.For other carers, it seems just about being able to take a break. As one puts it,if one can never leave the patient alone, one cannot get out at all, it is particularly difficult when one is nearing 79 and has bad health.
I sense that for other carers, respite is part of feeling more secure and more stable. One carer said to me:Our concern is respite care in this area. What happens to our son if anything happens to us? How do we go about finding help?That last comment is the crux for many carers and the reason for the Bill.
1038 There are schemes such as "family link" in north Oxfordshire, which effectively allows for the exchange of respite care between families with severely disabled children. Yet some parents have ended up waiting four years to find a link family, which raises reasonable questions about the wider awareness about such schemes. There is also the bizarre situation with emergency relief, where carers must give one week's notice that they will require emergency respite care in the home. It seems somewhat strange that it is necessary to give a week's notice that there is an emergency. Overall, to get much-needed respite, carers effectively have to enter into some sort of bidding process whereby those who shout loudest are most likely to get it, not necessarily the neediest.
Many carers also have concerns over local health care, and especially being able regularly and easily to contact their GP. There are specific concerns in Banbury that I shall not take up because I know that many other Members wish to speak. For example, I shall not detain the House about the closure of a GP practice in the centre of Banbury.
Those working in local social services endeavour to do their best for local carers, but the reality remains that their resources are stretched to the point where often only the neediest get proper assistance. All carers need help.
It is to be hoped that the Bill will serve to indicate that every carer needs proper access to their rights as carers, to their benefits—such as the carer's allowance—and to full availability of respite care, wherever in the United Kingdom they are found.
Many local authority departments, such as education and housing departments, need to be more fully involved in carers' welfare. Only a proper assessment of all carers' needs will ensure equal opportunity. Much of that is about process and getting information to carers; it is not necessarily about placing additional financial burdens on local authorities. I very much hope that the Bill will get its Second Reading today, go speedily through Committee and be enacted, and that the Government will then speedily implement its provisions, because carers deserve the best.
§ Mr. Roger Berry (Kingswood) (Lab)
It is a pleasure to speak in support of the Bill, and I congratulate my hon. Friend the Member for Aberavon (Dr. Francis) not only on his good luck in securing a high place in the ballot, which is always something to celebrate, but on his wisdom in choosing this Bill and the manner in which he presented it at the beginning of the debate. He deserves the warmest congratulations from all hon. Members.
I welcome the other speeches that we have heard so far this morning. I congratulate the hon. Member for Tiverton and Honiton (Mrs. Browning), my right hon. Friend the Member for Coatbridge and Chryston (Mr. Clarke) and the hon. Member for Banbury (Tony Baldry) on what they have said. Not only do I agree with every word that they have said—they have said some very important things—but I find therefore that the temptation now is for me to repeat some of the points that have been made already, so my speech may be slightly briefer than might otherwise have been the case. 1039 At the latest estimate, just over 10,000 of my constituents are carers. As we will all know, they, like carers in every other part of the United Kingdom, are in a variety of circumstances. There is the 84-year-old man who cares for his wife, who has dementia. There is the single mother who cares for a child with multiple disabilities and is trying to maintain a part-time job, and there are young people—indeed, some are children—who have caring responsibilities. The scale of that caring responsibility has been referred to already.
We are in a society that often wishes to attach a monetary value to as much as possible, perhaps for good reason, and whether the figure is that carers provide £ billion-worth of care annually£or £65 billion, or £50 billion—it is, as my hon. Friend the Member for Aberavon rightly said, a level of support and social care that is at least on the same scale as the total cost of the national health service. The extent of the support provided by carers is mind-boggling—to use a technical term—but that figure also suggests something very obvious as well: such social care could not conceivably be left to the market, even if that were desirable, which it is not, or, because of the cost if for no other reason, be provided in any way other than through the voluntary efforts of the 6 million or so carers throughout this country. That is the only way in which such care could possibly be provided, so the rest of society has an obligation to provide support for carers.
One of the tragedies of the current situation, which we all recognise, is that society as whole does not care enough for carers. We have that social obligation, and we must make further progress to do more. In recent years—since 1995—three Acts have moved us towards a recognition of the enormous value of caring in our society, and by the same token, persuaded us that we as a Parliament have a responsibility to provide that support on behalf of the rest of society. That was welcome progress, but my hon. Friend's Bill takes us the further, major step forward that is now required.
My hon. Friend and the hon. Member for Tiverton and Honiton both referred to the draft Disability Discrimination Bill. I hope that the House will endorse my hon. Friend's Bill with enthusiasm, but it is important that at the same time, the Government have produced that draft Bill to seek to complete that journey. I congratulate the Government most warmly on doing that, and on the specific content of that draft Bill.
My right hon. Friend the Member for Coatbridge and Chryston and I serve on the Joint Committee now considering that draft Bill, and it is important that we recognise the connections between securing equal opportunities for disabled people and securing them for carers. Of course that is not to say that there are not very many disabled people who do not rely on carers at all—very many of them live independently and are employed, and so on—but there are also very many who do rely on carers. In providing better rights for disabled people and access to transport, and so on, we are also providing a bit of respite for carers, who would otherwise have to provide that support. By the same token, the more we can provide help and assistance to carers, the more the family members and friends whom they care for will benefit, so we are talking about two closely related issues. I very much welcome not only the Bill, which is, of course, our primary concern, but the Government's proposals for disabled people's rights.
1040 As all hon. Members know, perhaps from personal experience, and from our constituency casework and the research of Carers UK, the Princess Royal Trust for Carers and many other organisations—the hon. Member for Banbury has done his own survey—many carers do not receive the support that they need. That point comes out time and again—so why is it so difficult for carers to secure that support? As the hon. Member for Tiverton and Honiton said, the first reason why many carers do not receive the support that they need is that they do not regard themselves as carers; they simply get on with the job.
For many years my father cared for my mother, who has dementia, but he still does not regard himself as having been a carer. People can be in their 70s or 80s, spending every waking moment looking after someone, and they just get on with it. They do not regard themselves as carers. So with the best will in the world, it is not just these debates that pass those people by, but however active carers organisations and local authorities are—and very many are—if people do not regard themselves as carers, all this talk about assessments, services and financial support, and all the literature on carers that might be available, passes them by.
Every year roughly 2 million people will cease to be carers and 2 million will become carers. In the next 12 months, 2 million people will become carers. If a large number of them do not appreciate that they can gain access to some support, it is hardly surprising that they will find themselves struggling on without the support to which they are currently entitled. The first problem is that many carers do not regard themselves as such—they do not self-identify.
The second point is that, as I have said, many carers do not appreciate the fact that support is available or that they have rights to have an assessment. They do not appreciate the fact that they might be able to secure financial benefits or support from social services departments, NHS bodies and so on.
The third point is that the available support is often inadequate. That is no reflection on many of the people who work for the NHS and in social services departments. I know many people in my constituency who work for the local authority social services, the mental health care trusts and other NHS trusts, and they are dedicated public servants. They know what public service is all about and are doing their level best to ensure that as far as possible, carers get the support that they need, but there is a systemic problem. We cannot rely on a few people to ensure that carers secure equal opportunities. That must be embedded in the whole structure of the work of local authorities and the NHS. So the Bill should be warmly welcomed.
The local branches of the Princess Royal Trust for Carers, Crossroads and so on are very active in Kingswood, and I have learned a lot about these issues from them. Carers and carers' organisations tell me that the first problem is information, because there is a need to ensure that carers know what they are entitled to. Surveys suggest that only between a quarter and a third of carers have an assessment—that is not very many. Surveys also show that half of those who have not had an assessment do not realise that they could have one. I have no doubt that everyone who speaks will refer to the 1041 need for information—not because we cannot think of anything else to say, but because it is such a central matter.
If carers do not have basic information, they do not get to first base, because they simply do not know what support is currently available. The Carers (Recognition and Services) Act 1995 and the Carers and Disabled Children Act 2000 made progress in that direction, but the Bill must be especially welcomed because clause 3 would give local authorities a duty to inform carers of their right to an assessment of their ability to provide care. That provision is absolutely essential to the Bill. I also welcome the fact that clause 2 would create a duty to ensure that carers were informed of services provided by local authorities. If the Bill goes through, there should be a step change in the information provided to carers—that is the first thing that needs to be done.
Something like 75 or 80 per cent. of carers are of working age, and many juggle their employment and caring responsibilities. Handling the stress and pressure caused by that is often difficult. That was the theme of last year's carers week, because many carers are of working age and the situation gives rise to several specific issues. Hon. Members rightly talk about the importance of child care. We talk about spending more on child care and the need to ensure that proper child care is available so that parents who wish to work have that opportunity, not only for their own benefit but for that of their families, the economy as a whole and the wider society. We should consider employment opportunities for carers in the same way.
If it is right—as it is—to address the inadequate provision of child care because it is a reason why many families cannot earn a decent income through employment, how much more true it is that the lack of opportunities for carers to have a part-time job, or a full-time job, is a major reason why carers and those for whom they care may be living on low incomes? It is important to address the employment problem, so I warmly welcome the fact that clause 1 would give local authorities a duty to have regard to providing services likely to encourage participation by carers in education, training and employment.
The other key provision in the Bill addresses carers' health needs. We all know that carers often find that their caring responsibilities put their own health at risk. The Princess Royal Trust for Carers carried out a survey in spring 2002 that showed that 85 per cent. of carers found that caring had an adverse impact on their health. Not only are caring responsibilities and the problem of raising money to support the family there, but your own health—I apologise, Mr. Deputy Speaker, I mean the health of carers—is also under enormous pressure, for obvious reasons, so that should be addressed. I warmly welcome the fact that my hon. Friend's Bill would do that, and thus support the essential provision in clause 2 that would require NHS bodies and local authorities to co-operate to promote the health and welfare of carers.
Good local authorities and good NHS bodies are doing much of that work already, but many are not. Even the good ones are not doing enough. The Government deserve congratulations on their national strategy for carers—the first such strategy ever published. I argue that the Bill is not only consistent
1042 with the Government's national strategy, but absolutely essential if the strategy is to have the required impact. As my right hon. Friend the Member for Coatbridge and Chryston said, implementation is everything. The national carers strategy, which has already been warmly welcomed, will be welcomed even more enthusiastically if measures such as those in the Bill ensure that we can deliver on what we have promised. Carers UK says that the Bill will make a real difference to carers—I am sure that it will. It should thus have the enthusiastic support of the Government and the House.
§ Hywel Williams (Caernarfon) (PC)
I congratulate the hon. Member for Aberavon (Dr. Francis) on his good fortune in securing his slot in the ballot and on introducing the Bill, which I am pleased to see. He is a historian by profession, so he will know, although perhaps other hon. Members might not, that he and I share the name of a great reforming king of Wales: Hywel Dda—Hywel the Good. In the early mediaeval period, he codified Welsh laws and brought forward elements such as more equal rights for women, which he did slightly earlier than we managed in this place. He also brought forward an interesting idea on criminal responsibility whereby not only criminals, but their families and extended families, were responsible. That form of community policing might have commended itself to the Home Secretary had he been in the Chamber. The hon. Member for Aberavon and I share the name, and he clearly follows in a glorious tradition—I congratulate him on that.
Being Welsh, I suffer, as does the hon. Gentleman, from the classic Welsh question when one is introduced to someone whom one has not met before: "Who are you?" and "Who are you, really?"—the second question that is always asked. I suffered, as I am sure he has, from my mother joining me when I was meeting somebody of some standing, such as a poet, a teacher, a preacher or a musician, and saying, "Tell him who you are—exactly." So, let me tell the House that the hon. Gentleman is not only the Member for Aberavon, but the son of Dai Francis, the inspiring and inspired leader of the National Union of Mineworkers in Wales. During the 1970s and 1980s, he showed many others how to appreciate the value of industrial trade unionism. He also had wider interests because he was committed to equal rights and human rights throughout the world. In that sense, the hon. Gentleman is truly tad y mab—the son of the father, or perhaps these days, to put it more correctly and prosaically, the child of the parents.
I am pleased to support the Bill as a social worker in the 1970s and a social policy and social work teacher. I am pleased that its aims and intentions are clear. Some time ago, I had the opportunity to write a bilingual training package on community care in Wales called "Gofal: Gofal yn y Gymuned"—"Gofal: Care in the Community". We had to wrestle with the complexities of the law on community care while preparing the package, and I shall illustrate that by mentioning a small example of the difficulties that we had. By the way, I am glad to see the prominence that the hon. Gentleman gives to the fact that the Bill will apply to England and Wales—its application in Wales will be welcome.
1043 My small example is that of LACs and WOCs—some hon. Members will be familiar with them, but others will not. A LAC is a local authority circular and a WOC is a Welsh Office circular, or at least it was when we had a Welsh Office. The problem was that not all LACs were WOCs, and some WOCs were slightly different from the equivalent LACs. Working our way through that minefield was a nightmare. I hope that when the Bill is implemented, which I hope will happen very shortly, we will not face similar problems with LACs, WOCs or their modern equivalent.
The Bill is admirable for addressing the wide range of carers' experiences of life, taking into account social, educational, training and employment factors. It is high time that carers are not seen one dimensionally as just carers and nothing else. The hon. Gentleman said that his aim was to address the attitude of public bodies, local authorities and health authorities. I am full of admiration for his determination to do that. As a teacher, working with people and learning how to deal with other people in the "people business", as we used to call it, I worked with knowledge, skills and attitudes. Knowledge is dead easy to teach; skills are more difficult to teach; attitudes are almost impossible to teach. It is very difficult to change people's attitudes. I commend him for attempting to do that. If we get the attitude straight, a lot of the other stuff follows. That is a good thing.
What is the other stuff that is involved? It means giving people who have caring responsibilities greater opportunities in education, training and so on, and providing proper information. I began as a social worker in 1974, 30 years ago this year, I regret to say; it is a long time ago. I remember trying to persuade people of the virtue of the attendance allowance, which had just been introduced. A great deal of publicity surrounded it and a lot of information was available on it. I started working in the Rhymni valley, which had a large number of people with disabilities who could benefit from attendance allowance, as it was then, and the provisions of the Chronically Sick and Disabled Persons Act 1970.
One example comes to mind of a lady whom I saw a number of times. She was a carer, looking after her daughter with Down's syndrome. I realised that Mrs. Parry did not get up from her chair during my time with her. She sat propped up in it during our interviews. Eventually, I asked her whether she had any difficulty. She said, "My hips have gone completely; they are shot. I can scarcely walk." I asked her how old she was. She said, "I was 66 last week." Hon. Members will know that that fell just outside the age limit to apply for attendance allowance for her daughter. That was in 1976 or 1977.
In terms of the provision of information, I was dismayed to find only three or four weeks ago that an older couple of my acquaintance did not know enough about the attendance allowance to claim it, although they had a right to receive it for several years. Those people are highly educated, well informed and well connected within the local community. There was no reason why they should not know about it, but they did not and had missed out on many thousands of pounds and the help that the attendance allowance would have given them. I cannot put enough emphasis on the need
1044 for proper information to be provided. The benefit of information on all aspects of people's lives when they have caring responsibilities is important.
As for the focus on health and well-being, I have a personal reason for supporting the Bill warmly. My late father and my mother have cared for my brother for 31 years following a serious road traffic accident. He still lives at home. My mother is in her early 80s and has been a carer all those years, since the early 1970s, but would never see herself as such. She had to be persuaded to identify herself as a carer. She wanted nothing to do with us after that, but she accepted that she was a carer. Her health now needs attention, but she still devotedly cares for Geraint, my brother. The focus on her health and well-being is important and will become increasingly so. I welcome that element of the Bill most warmly.
The hon. Gentleman said that he was open and happy to discuss aspects of the Bill should they cause any controversy. He is most courteous and I am sure that he would be happy to do that. However, I encourage him not to discuss them too much. Let us get the Bill through the House quickly and in its entirety, as far as that can be achieved, and implemented quickly, as other hon. Members said. It is an honour to support the Bill. I commend it to the House.
§ Jane Griffiths (Reading, East)(Lab)
I add my voice to those hon. Members who have congratulated my hon. Friend the Member for Aberavon (Dr. Francis) on taking this opportunity to introduce this very important Bill, which I hope and trust will have the Government's support. I know that it has the support of hon. Members on both sides of the House.
In supporting the Bill, I want to highlight briefly some of the problems faced by older carers. All our constituencies have a large number of people who are members of the first generation of parents who have cared for their children with disabilities, who are now adults. Those parents are reaching retirement age and although they may not have health problems of their own, they anticipate that they will have them and are fearful for the future of their adult offspring when they are no longer around to take care of them.
A family in my constituency, John and Irene Flen and their daughter, Lisa, who has Down's syndrome, are in exactly that situation. The parents have retired, although Mrs. Flen was not able to work for most of her adult life because of her caring responsibilities. When Lisa was born, Mrs. Flen was told, as was common at that time some 40 years ago, "It's a Mongol. Put it away and forget about it. Have other children." Like many others of their generation, Mr. and Mrs. Flen did not do that. They were told that Lisa would live perhaps only a few years, but she is 40, she is fine and she is a good friend of mine. People like Mr. and Mrs. Flen—there are many of them and their numbers will not diminish as we all live to a greater age—have had their opportunities for work, education, personal development and even holidays curtailed drastically because of their need to care for their sons and daughters. That is why the Bill is so important.
Some hon. Members said that the Bill should not be necessary because what it is trying to achieve is common sense. The hon. Member for Tiverton and Honiton
1045 (Mrs. Browning) said that, and she was right, but unfortunately it is necessary. There are statutory duties on local authorities and public bodies of various kinds, but a change in attitude enshrined in law is what we need for a better future for carers and for those for whom they care.
When local authorities perform their statutory duties, they comply with the law, but because of the way the law stands there is a tendency for them to talk about adults with learning disability as though they were all the same. Some adults with learning disability are able, can work and live more or less independent lives. A great many, however, cannot and will never be able to. That puts carers in a dilemma. Some will want to promote their offspring going to work and leading an independent life while others know that that will never be possible for their offspring. They feel that they are treated as just one mass of people whose needs are all the same—they are not. Equality of opportunity, if it is to mean anything, is the recognition that each person is an individual, has individual needs and is different from each other person—their starting point in the world is not the same as the person next to them. That is why the Bill is so important. I implore the Government to support it, and I hope and trust that they will do so.
§ Mr. Paul Burstow (Sutton and Cheam) (LD)
I add my congratulations to the hon. Member for Aberavon (Dr. Francis) on his success in the ballot, his wisdom in selecting such a subject as the basis for a Bill, and his diligent drafting to get it to where it is today. I appreciate the level of work in negotiations and discussions of the nuances of the text and how Government lawyers and others look over that. That process is ongoing and I appreciate the hon. Gentleman's hard work.
I come to this debate not only to respond from the Front Bench on behalf of the Liberal Democrats, but with the honour and privilege of being one of the Bill's sponsors. That might indicate my party's general approach to the Bill: we support it and hope that it will secure support from the Government and ultimately make its way on to the statute book. I agree that it is important not just to progress this legislation to enactment but to ensure that it is implemented, rolled out across the country and leads to the changes in attitude and culture to which hon. Members, especially the hon. Member for Reading, East (Jane Griffiths), have referred.
As has been said, the Bill is about the health and well-being of people; it is about stepping back and recognising that when one looks at a carer, one should see first the person and identify their needs as a whole rather than trying to isolate their role as a carer. The latter is not possible, yet all too often we have tried to make that distinction. The Bill is about the culture and attitude in organisations, and the way in which society values and regards carers. It is about knowledge and information. Such knowledge is all too often held in the wrong places or by people who do not appreciate that it is their duty to share it with carers, their families and others. This is all about ensuring that people have access to that information, and that in turn they can access the 1046 services and support to enable them to realise their full potential and to enjoy a rounded life in which they feel able to continue to discharge what they see as their responsibility to care for a loved one.
The Bill is one of a number over the years that have sought to drive forward and widen the rights of carers. That process began with the Carers (Recognition and Services) Act 1995, which established for the first time the right to an assessment. However, that right was coupled with the right of the individual who needed care to seek an assessment. In effect, the Bill blocked the opportunity of carers to receive a separate assessment once the individual receiving care services chose not to have a local authority assessment. That anomaly was rightly sorted out by the Carers and Disabled Children Act 2000, which decoupled the requirements on the assessments of carers and of those receiving care services.
The Bill rightly goes on to recognise one thing that we missed when scrutinising the 2000 Act: the need to place a duty on organisations that carry out the assessments and others to tell people that they are entitled to such assessments. The hon. Members for Tiverton and Honiton (Mrs. Browning) and for Reading, East rightly asked why on earth we should have to include such a provision in a Bill. As today's speeches have shown, it is necessary to create a clear duty to tell people of their entitlement so that a real difference can be made to their daily lives.
I agree with many of the comments of the hon. Member for Tiverton and Honiton, and I want to pick up her point that we are not talking about rocket science or things that necessarily add greatly to expenditure from the public purse. We are talking about doing things differently in service provision and the way in which organisations are configured and operate. Ultimately, we are talking as much about saving money as we are about spending it. I will come to how the Bill could result in profound savings and make a difference to quality of life.
It is right to state clearly that we must support carers in their caring role, but that we must go beyond that. As has been said, carers are undoubtedly the backbone of our care system. The 2001 census revealed that there were 5.9 million carers. The Carers UK report, "Without Us", which used an Institute of Actuaries model, came up with the savings to the rest of us in society made by that caring: £57 billion. It is worth bearing in mind that the estimate by Carers UK back in 1993, on the previous occasion that such a figure was produced, was £34 billion. Therefore, in the space of eight years, the estimate of the value of carers' contributions in this country has risen by 70 per cent., which is much more than the rate of inflation. The cost of alternative care has risen by 42 per cent. over the same time. The proportion of care provided by carers has substantially increased over that period; it has more than doubled.
I shall not dwell on this point today—perhaps it is a matter for other debates—but it is interesting to note that more home care hours are provided today to fewer households. I cannot help but wonder whether there is some relationship between the fact that informal carers are caring for more hours and the state is caring for fewer people in their households for fewer hours. That is an interesting correlation. I am sure that the Minister 1047 will assure me that it is not a statistical one on which we can rely, but it certainly seems to feature in carers' minds. They do not always get access to the services because of eligibility criteria that often have regard for the fact that there is a carer in the household, which results in the downgrading of the need of the person receiving care and they do not receive quite as much.
In addition to the census figure, the Carers UK report, "Could It Be You?" estimated that at some point three in every five people will end up as a carer of a person with a long-term medical condition or disability. The study concluded that, on the basis of existing public policy on community care and so on, by 2037 nearly an extra 3.5 million carers will be needed to cope. That suggests that there will be 9.6 million carers in this country by 2037. On the basis of the £57 billion saving, and let alone any effect of inflation, carers will be saving the country £92.7 billion by that year.
I want to talk about why the Bill can make a difference to the health of carers. There is mounting concern about the health and well-being of carers, particularly among the young and old who are vulnerable in their own right. Carers UK research, "Ignored and Invisible", found that half of carers surveyed had suffered a stress-related illness and that half had suffered a physical injury. According to the Office for National Statistics, those caring for 50 or more hours a week are twice as likely to become permanently sick and disabled and twice as likely to describe their own health as poor.
According to data in the 2001 census, 9,000 children aged five to 15 provide at least 50 hours a week, and a further 18,000 provide 20 hours or more a week. As interventions on the hon. Member for Aberavon revealed, there is a need to explore in Committee how we ensure that children who are carers are properly supported and how we might make the Bill more applicable to their needs by dealing with the interrelationship of legislation on carers and the Children Act 1989.
More than 1 million people aged 65 and over provide care and 382,000 of them are providing care for more than 50 hours a week. Less than a third of those people provided a heavy burden of care, and they did not regard their own health as very good. More than a quarter, or 103,000, rated their health as not good, and 44,000 people over 85—I could not believe that figure, and checked it again today—provided 50 hours or more of care a week. That is a stunning number of people who, at that stage in life, may be afflicted by their own problems, disabilities and ailments. What view would the Government take if 9,000 children aged five to 15 worked outside their homes for 50 hours a week or more? Education Ministers would rightly protest about the effect on their academic education, and others would rightly campaign about their welfare. Surely, that is an unacceptable burden to place on children. Whether it is the young or the over-65s who are working as carers, if they were in paid employment, they would be breaching the European working time directive. There would and should be an outcry about the numbers who are shouldering that heavy burden of more than 50 hours of care a week.
Caring, as has already been said, can seriously damage people's health, and the Bill offers a practical way of addressing that health consequence. At present, as has been said, the NHS is not very good at identifying 1048 and meeting the needs of carers, whom it treats as just the friends or relatives of the patient. However, the dynamics of the relationship between the carer and the cared-for is far more complex than a simple dependency. It is about interdependence between the carer and the cared-for at psychological, social and biological levels. I therefore hope that the Bill will enable the NHS to focus clearly not just on patients needs but on carers needs, and will ensure that in health promotion activities carers are given proper priority. The need for training in, for example, lifting, should be properly addressed.
The national priorities guidance of 1998 gave GPs the task of identifying carers by April 2000 although the target was reset to 2002 because of data protection problems. This is one of the few issues affecting carers about which I have not asked a written question, so I wonder whether the Minister would save me the trouble of tabling one by telling us about progress towards that target. It would be extremely useful if he could do so.
I have minor concerns about some clauses, which I hope to explore further in Committee. Clause 1(1) refers to "social services functions". The hon. Member for Kingswood (Mr. Berry) asked whether we needed to take a systemic approach to the problem and embed within local authorities a view of carers' needs and welfare that may extend beyond social care and social services departments. Why does the Bill simply refer to "social services functions" in respect of promoting equal opportunities for carers? That issue needs to be considered, and we need to explore in Committee the way in which clause 1 interacts with clause 2.
The hon. Member for Stourbridge (Ms Shipley) made some important points about leisure opportunities, and I know of the need for such opportunities from my experience over the past few years of shadowing carers in my constituency, thanks to the local carers centre in Sutton. I met a woman called Jenny who has a 10-yearold son called James with attention deficit hyperactivity disorder and autistic spectrum disorder. She has struggled to get services, but is now reasonably happy with those that are provided. However, she has a second son, Lewis, who is in infant school. Lewis is an informal carer—he supports his mother, makes her laugh, and looks out for his older brother. Jenny told me how isolated she feels, particularly in school holidays, when it is difficult to manage the play needs of both children and find something appropriate for them. Consequently, school holidays are difficult. The centre identified the need for regular supervised holiday activities to be available for the child with autistic spectrum disorder but also for Lewis. I hope that such provision will be made when the Bill is rolled out across the country. Clause 4 refers to the role of the local education authority. We also need to consider the role of children's trusts, and examine the way in which they will interact with the new legislation in fulfilling children's needs. I therefore look forward to the opportunity to examine the Bill in more detail.
I should like to draw the attention of the House to some good practice because, as been said, we must make sure that the rest catch up with the best. My local authority, the London borough of Sutton, has worked with and for carers since about 1986, and was one of the first local authorities in the country to produce a carers strategy, which it has recently revised and updated. Next week, on 9 February, it will launch its revised and
1049 updated multi-agency strategy, which has been drawn up by professionals, but has also sought to involve and consult carers themselves. I should like to put on record my appreciation for the work that the Princess Royal Trust for Carers does to support carers centres throughout the country.
My locality has been blessed with an effective carers centre since 1994. It has helped to change the lives of many hundreds of people by providing the information that we have discussed today. I was struck by some of the words in the carers plan that it produced. For example, one carer said:When life is difficult, well meaning people will offer kind words and flowers, but what I really need is practical help and solutions".Those poignant words from a Sutton carer are included in the plan. At the end of the day, we are offering important and perhaps useful kind words, but we are not necessarily delivering change—change will be a consequence of the Bill being enacted. Life changes when people become carers. Things that they took for granted stop, and it is hard suddenly to find that one's husband or wife needs support, but can themselves no longer provide as much support as they once did. No matter how deep the love that binds people together, caring 24 hours a day, seven days a week grinds people down. The price that carers pay goes unrecognised.
The hon. Member for Kingswood made a crucial point about self-identification. Many people do not identify themselves as carers, as the hon. Member for Tiverton and Honiton said. In my constituency, there are 16,000 carers, but only 3,000 on the register. Three thousand carers show up on the radar, but the rest do not. The Bill must help people to recognise that they are carers, and ensure that local authorities and other agencies take the necessary steps to seek them out. If we do not do so, the health bill and the consequences for society will be huge. I applaud the hon. Member for Aberavon for introducing the Bill, and hope that we can turn fine words and rhetoric into practical action and a tangible change in the quality of life for all the carers in this country.
§ Mr. Wayne David (Caerphilly) (Lab)
Like other Members in the House, I warmly welcome the Bill. I am delighted that it has cross-party support and pleased that, outside the House, support has already been given by a wide range of opinion across a range of organisations: British Gas, HSBC, PricewaterhouseCoopers and the National Institute of Adult Continuing Education, which have all been mentioned. Significantly, Jane Hutt, the Welsh Assembly Government Minister for Health and Social Services has also lent her support. I note what has been said about the Bill following the good example of what has happened in Scotland and Northern Ireland.
From my own experience, I am very conscious of the fact that my mother cared for her mother, who had senile dementia for many years. She looked after her mother with great care and attention, but, inevitably, a strain was put on her and the whole family. My father cared for my mother for a number of years and, in a sense, after losing my father the year before last, I have become a carer now, although—this point has been made—I seldom think of myself as filling that role.
1050 I have to say, however, that what I am doing is nothing compared to what my hon. Friend the Member for Aberavon (Dr. Francis) and his wife did for many years with their son Sam. For 16 years, they gave him love and a great deal of care. I know that from my contact with the family. It is entirely appropriate, therefore, that the Bill has become known as Sam's Bill. I pay tribute to my hon. Friend for bringing forth the legislation and for consulting so widely with so many people. I very much hope that the Bill commands a consensus in the House and has the wholehearted support of the Government.
It is true that carers have rights and they get support, but often that is more apparent than real. For example, under current legislation, although carers have the right to an assessment, that assessment does not always happen. When it does, it often does not take account of carers' wider needs and considerations, such as their broader need with regard to employment, training and lifelong learning.
Therein lies the importance of the Bill, which will change things for the better in three important ways: first, carers will be given more, better and systematic information so that they can make well-informed choices about their lives; secondly, carers will be considered by social services departments and by the health service; and, thirdly, assistance will be given to carers so that they have more opportunities in leisure, education, employment and training.
It can be difficult to understand how such a Bill will materially affect and improve people's lives. I want to show by way of example what might happen if the Bill is enacted. I shall quote a hypothetical case study from Carers UK, which cites in a briefing, which I know all Members have received, the example of a parent with a disabled child. This is the carer speaking:I tried to talk tosocial servicesabout going back to work but they said my situation was just too difficult. They would not even discuss it with me. I was at the end of my tether after one particularly bad week and was close to losing it. Whilst I was sorting out yet another problem with our benefits at the Citizens' Advice Bureau I found a leaflet about the local college that had all sorts of courses for people like me—no confidence, nothing to offer! And they were on at times when I can sort out a bit of care for Danny"—the sonand they are fairly flexible so that hospital appointments and the like wouldn't get me thrown off the course. I really look forward to studying and I cannot believe how my life has changed… I feel I've got all sorts of opportunities and I feel like I'm worth something. Danny too, gets more out of me because I'm happier, and I feel like I have a life too, outside of my caring.That is a graphic example of what could happen to so many people if we show political commitment across the House, and if the Government have the will, to turn the Bill into law.
It is also worth pointing out the fact that the Bill is required for economic reasons across the country as well as for personal reasons affecting individuals. The TUC has said clearly that it will bring economic benefit to this country, citing the fact that some 80 per cent. of carers are of working age. That is a large number of people who are potential employees. However, it is also important to point out the fact that, although the Bill 1051 presents economic opportunities, it will not impose extra costs for any authority, whether it is a local authority or indeed national Government.
Many Members have spoken eloquently about the Bill. I have found this a particularly moving debate, and have been struck by how much common agreement exists already on both sides of the House. I hope that the Bill will receive the endorsement of the House today, that it will proceed to Committee, and that it will eventually reach the statute book. I sincerely hope that it will be implemented effectively, as Members have said, and that due credit will be given to my hon. Friend who has brought it forward as a private Member's Bill.
§ 12.5 pm
§ Mr. Paul Goodman (Wycombe) (Con)
It is a pleasure to follow the hon. Member for Caerphilly (Mr. David), who followed me when I made my maiden speech and was very kind about it. He spoke from his experience today, and now I have a chance to follow him.
First, I congratulate the hon. Member for Aberavon (Dr. Francis) on introducing this Bill. He has great expertise and interest in the needs of carers, as we all know, and he set out the case for the Bill extremely methodically, thoroughly and comprehensively. I follow him in paying tribute to the work of Carers UK and carers organisations everywhere, including the South Bucks Carers Association, which is currently based in my constituency, which does so much to help the efforts of carers in Buckinghamshire, and is making special efforts to reach ethnic minority carers in Wycombe.
The Bill has the support of the official Opposition in principle. I want to make it clear to the hon. Member for Aberavon now that we will provide whatever support we can in Committee to help to get it on to the statute book. I say that unreservedly.
Before turning to the details of the Bill, I want to revisit briefly the background against which it is set, about which many Members have spoken knowledgeably.
The statistics relating to carers are awesome. Some 7 million people in the UK are looking after someone who is frail, sick or has a disability—some 10 per cent. of the population. More than 300,000 people become carers every year, and as the hon. Member for Sutton and Cheam (Mr. Burstow) reminded us, three out of five people will become carers during their lifetime. According to Carers UK, the support that carers provide is worth £57 billion a year, which is more than we spent on health in 2001–02, as the hon. Member for Kingswood (Mr. Berry) pointed out. Apparently, carers save each taxpayer some £10,000 per head.
Those are necessarily dry, cold and abstract statistics, but behind the statistics is a moving human story, to which all Members who have spoken have alluded, which tells us a lot about the way we live now. Life spans are increasing, and as people live longer they are increasingly prone to disability. It is a striking thought for all of us that if we live long enough, we will probably gain a disability of one sort or another. At the other end of the life cycle, more children with disabilities are surviving for longer because of improved medical care. And families, who must deal and cope with those needs, for a whole complex series of reasons, are smaller and more fragile than they once were.
1052 Several hon. Members, including my hon. Friend the Member for Tiverton and Honiton (Mrs. Browning), have referred to the extraordinary strain that those responsibilities place on the well-being, as she put it, of carers. In particular, they place a strain on the larger number of carers who are women, and who may give up working in the labour market because they feel they have no choice but to do so. Later, they may feel that they no longer have the skills or the confidence to reenter the labour market, whether when they want to do so or when they feel that they have no choice but to do so, for the sake of themselves and their families. If they do work in the labour market, they may feel that their employer does not always understand their needs.
Carers may feel bewildered about where to go for help and advice when a child with a disability arrives, or when a loved one becomes ill and frail. This has been a common theme in our discussion this morning. As the survey that my hon. Friend the Member for Banbury (Tony Baldry) conducted in his constituency showed, carers may well not know their rights under law, and may feel bewildered about how to deal with the interlocking and multi-faceted problems that they face, particularly in regard to respite need.
Even the most dedicated carer is bound to feel in need of a break from time to time, when faced with the prospect of caring unceasingly for another person. The hon. Member for Sutton and Cheam suggested that the responsibilities that carers undertake out of love can grind a person down. Even the most dedicated carer can sometimes feel that that is happening. My own experience, as a constituency Member of Parliament, of talking to carers in my area has taught me that taking a break from caring is one of the most frequent desires that they express. The carer is often in need of care themselves.
It is no wonder, therefore, that according to the Carers UK report, 55 per cent. of carers reported significant health problems, while 43 per cent. reported that they had sought medical treatment for depression, stress or anxiety since becoming a carer. According to the "Missed Opportunities" report, only 32 per cent. of carers have been assessed by social services, and of those, 57 per cent. did not receive any extra support. Nearly 50 per cent. of carers had not been informed that they had the right to an assessment.
These interlocking problems are clearly illustrated by a single observation made to me by the South Bucks Carers Association. The point was first made in this debate by my hon. Friend the Member for Tiverton and Honiton, and it has been echoed round the Chamber throughout our discussion. It is that carers do not always like being called carers, because they feel that caring is something that comes as naturally to them as breathing. The hon. Member for Kingswood (Mr. Berry) was right to say that the formidable responsibilities that carers face cannot altogether be sloughed off on to the market. Nor can they be sloughed off on to the state or the rest of civil society. There has to be a partnership between the three, based on equal opportunity. That is where the Bill comes in.
The Bill seeks to provide solutions to some of the problems that have been aired in the debate, and the official Opposition support it in principle. However, we shall want to make a number of inquiries in Committee about the detail of the provisions. Those inquiries will be 1053 based on the following argument. There is general agreement among all the main political parties that Britain is over-centralised; localisation is now the buzzword. The House would presumably agree, therefore, that new statutory or regulatory duties to be placed on local authorities or other bodies should not be undertaken without good reason. It is therefore important to ask, when examining the Bill on Second Reading, whether the additional duties that it seeks to place on local authorities and other bodies are necessary.
Clause 2, for example, seeks to ensure that provision for informing carers is written into the community strategies drawn up jointly by local authorities and health authorities. Some people might argue that there would be a danger, if the Bill were passed, of successive good intentions being written into community strategies to a point at which those strategies became overloaded or overburdened by the requirements of different sections of the community, and thus became unworkable. The official Opposition are not persuaded by that argument, because it seems reasonable to judge each potential addition to a community strategy on a case-by-case basis. The hon. Member for Aberavon made a good case for that this morning. We shall be interested to hear whether the Minister agrees with that assessment.
In regard to clauses 1, 3, 4 and 5, Carers UK has comprehensively set out the argument thatthere would also be some longer term savings through better health of carers, more sustained employment, and return to work for some carers.We would be interested to know if the Government agree. It could be argued—the Minister may refer to this—that the various duties that the other four main clauses would place on local authorities and other bodies could incur extra costs. I am not convinced of that myself, but it should be considered in Committee.
Perhaps the Minister could provide us with any information he has about the impact in cost and other terms of the duty that local authorities already have in Scotland and Northern Ireland to notify carers of their right to an assessment. I think the hon. Member for Aberavon said that he had been told by the Scottish Executive that there were effectively no extra costs.
I will not follow the path trodden by the hon. Member for Caernarfon (Hywel Williams). He spoke of LACs and WOCs, bodies altogether outside my experience. I wondered whether in Scotland there might be such bodies as SOCs—but I will not go further down that path, Mr. Deputy Speaker, as it is one that you would not encourage me to tread.
We welcome the Bill unreservedly, and look forward to examining it closely in Committee with a view to supporting it. We believe that it offers the prospect of improvement in the lives both of carers and of those for whom they care, and of their being given the equality of opportunity that it seeks to confer.
§ Mr. Huw Edwards (Monmouth) (Lab)
It is a pleasure to speak in this debate, but I sometimes wonder whether such debates should be held on a Tuesday or a 1054 Wednesday evening, when I think many more Members on both sides of the House would like to take part. I had the good fortune to speak on the last private Member's Bill relating to carers, introduced by the former Member who is now Lord Pendry. It became the Carers and Disabled Children Act 2000, and it had cross-party support. I am delighted by the support expressed today by the hon. Member for Wycombe (Mr. Goodman) on behalf of the Conservatives, and the hon. Member for Sutton and Cheam (Mr. Burstow) on behalf of the Liberal Democrats.
I echo others in congratulating my hon. Friend the Member for Aberavon (Dr. Francis). He is an historian, and a person of great knowledge and erudition. It was a pleasure to sit with him recently on a plane travelling to Atlanta with the Welsh Select Committee. He told me first of his familiarity with Paul Robeson and his family; then he told me about Sam, his son, who sadly died at the age of 16, and had given him a lifelong interest in issues relating to carers and learning disabilities.
I have the honour to be president of the Chepstow branch of Mencap, and worked for Mencap nationally some time ago. I have worked with Lambeth social services, have had the pleasure of being a lecturer in social policy, and have been involved in the training and education of many people who have worked in the caring professions. I have a great interest in caring and in the carers' movement in my constituency.
I listened with some envy to some Members talking about carers' centres. Mine is a very rural constituency, where it would be almost impracticable to have such a centre in all the areas of population. The Bill will improve the information given to carers in a number of ways. We should note the fact that the internet is increasing access to such information.
I hear regularly from one of the carers in my constituency, Hermione David, who cares for her disabled husband and has done so for many years. Earlier this week she invited me to meet carers attending a pampering session. I have never been to a pampering session, and I could not go yesterday: I had to assure my constituent that I would be here to support the Bill and give all the assistance I could to my hon. Friend. There are about 9,000 carers in the Monmouthshire part of my constituency, and several thousand in the Torfaen part.
I have only been to Buckingham palace once. I went to a royal garden party. I was able to take two or three of my constituents, and I decided to invite representatives of the carers' movement. I took three, one of whom worked as a carers support worker. My own mother came as well. She lived in Neath, in the local authority area represented by my hon. Friend, and she too had been a carer, looking after her own elderly mother. I remember thinking, even when she was in her 60s, "If this goes on much longer, her own health will seriously deteriorate." It was at that point that I intervened and got social services to provide support for my mother in her responsibilities as carer for an elderly mother in her 80s.
I will never forget that Buckingham palace garden party. I stood for the national anthem at the end of that glorious afternoon, noticed that 9,000 people were standing to attention, and realised that that number represented every carer in my Monmouth constituency. Such is the massive number of people who are carers in this country.
1055 Of course, none of us knows what the next telephone call will tell us; our whole lives could be transformed on hearing that somebody whom we are close to has had an accident or a stroke, or has developed a debilitating illness that will transform their lives—and ours. I am very pleased that services for carers have improved in my constituency. I recently attended carer support groups in Chepstow. Carers from Gloucestershire county council and others looked on in envy at what was happening in Monmouthshire, because services there have significantly improved. They have improved in recent years from a fairly low base, because local authorities did not have the legislative responsibility to provide support for carers.
It is to the credit of this House and previous Members of it that the rights of disabled people have developed significantly in recent years. There was the legislation to which the hon. Member for Caernarfon (Hywel Williams) referred. It was known as the charter for the disabled, and was introduced by Alf Morris, the then Back Bencher who became the first Minister with responsibility for the disabled. Since that legislation, access issues have been part of the country's natural vocabulary. Such developments have occurred because of legislation that this House has enacted.
In my experience, carers are often a most sceptical group. Such people often come to my surgeries to discuss pensions or operation waiting lists, but when I ask a few questions, I find out that the main frustration in their lives is not necessarily that they need that particular pension problem sorted out or that particular operation to be done quickly. The problem is that other responsibilities impede them; they are conscious that their inability to get the operation that they need, for example, is related to their responsibility as carers. The great thing about the Bill is that it recognises the roles and responsibilities of carers outside their direct caring responsibilities. To date, legislation has focused on carers' responsibilities as carers, and has not adequately recognised their social roles outside caring.
Hermione David wrote to me recently. She said:Alison Short our last chairperson"—of the carers' group that she attends in Chepstow—lost her husband when she was 55. Too old for a career, but she was a seamstress and had eked out an existence since then until she receives her pension.Recognising people's needs in terms of work, leisure activities, education and other aspects of their social roles is a key principle of the Bill. Hermione David told me:I totally dread the day that I may lose Davidher husband.We lose our confidence completely and, as I have said, I feel locked in a bubble watching the world go by.That is a sad statement from somebody who has worked very hard on behalf of other carers.
Carers whom I know are often very sceptical about the terminology that many of us use. We talk the language of equal opportunities, social inclusion, social exclusion and social justice, but that language may not come naturally to them. If ever there is a group of people who say, "I'll believe it when I see it," it is carers. However, I do believe that carers are now "seeing it". They are seeing assessments being undertaken, although 1056 perhaps not as quickly as they should. They are seeing the direct payments—payments that they are getting as a result of recent legislation on carers. They are seeing access to respite care, which might not have been there before.
I would have loved to be able to introduce the Bill that my hon. Friend is introducing. I have entered the ballot several times since I have been a Member of Parliament, but never come high enough to be able to introduce my own Bill. I did once have a ten-minute Bill—and nothing mystifies people outside the House more than what such a Bill actually is. I have to inform them that, sadly, they often last only 10 minutes—but at least the principle—that there should be a right to assessment and support for respite care, if the carer is deemed to be in need of it—was incorporated into the Bill that was introduced by Tom Pendry when he was an MP.
My hon. Friend the Member for Aberavon made some important points on what the Bill is about. He stressed the wider role and responsibilities of carers, their lack of opportunities, and the lack of information and focus on their health and welfare. Local authorities have statutory responsibilities for carers; health authorities and health trusts do not, as yet, have such specific responsibilities to be mindful of the health and welfare needs of carers. I am very pleased that the Bill will bring that about.
I congratulate my hon. Friend and thank other hon. Members for their contributions. It is noticeable that when hon. Members speak about this subject, they usually mention the experience of meeting carers in their own constituencies, and sometimes, as we have heard today, they speak about their own personal experiences. I wish my hon. Friend every success with the Bill and I am happy to offer him whatever assistance I can.
I sincerely hope that the Government will support the Bill. I was pleased and encouraged by the Prime Minister's response to my question last week and his recognition of the national carers strategy. Though he did not say it at the time, we should not forget that the Prime Minister's first reception when he took office was for carers. That was a significant expression of the Government's commitment to providing support for carers. I am glad that if we can get the Bill through, we shall have still more legislation on that subject. I wish my hon. Friend every success.
§ Mr. Martin Caton (Gower) (Lab)
It is a great pleasure to be called to speak in this excellent debate. When I sit down and the Minister rises to speak, I hope that he will give the green light, which will be a perfect finish to an important debate. If we can turn the Bill into an Act, it will bring real benefit to a section of our society that all too often in the past has been taken for granted.
First, I congratulate my close constituency neighbour, my hon. Friend the Member for Aberavon (Dr. Francis), on securing the silver medal in the private Member's Bill ballot and, more importantly, on introducing such a valuable legislative proposal as his chosen Bill. I also congratulate him on setting out so clearly the Bill's provisions and the benefits that it will bring.
My hon. Friend's personal experience and his total commitment mean that the Bill could have had no more appropriate or dedicated champion. Indeed, many of us 1057 recall that, when he entered the House in 2001, a major theme of his maiden speech was the need to improve the rights of carers as well as those of disabled people. He reminded us of the same principles in his opening speech this morning.
My hon. Friend has dubbed this legislation "Sam's Bill", after his disabled son, whom he and his wife, Mair, cared for until, tragically, he died at only 16 years of age. In common with my hon. Friend the Member for Caerphilly (Mr. David), I am one of only a few hon. Members who had the pleasure and privilege of knowing Sam. No one who met Sam could fail to be touched by his vivacity and warmth, so it is entirely appropriate that his name should be attached to a measure that is all about improving the quality of life for many people.
According to the 2001 census, 5.2 million of our fellow citizens are carers, although I am sure that my hon. Friend and other hon. Members are nearer the mark in talking about 6 million or 7 million. The numbers are underestimated for the very reason cited by the hon. Member for Tiverton and Honiton (Mrs. Browning)—that so many carers, like herself, do not regard or define themselves as carers, so when they were filling in their census form they omitted the section on carers. Even on the census figures, however, more than 850,000 people are dedicating more than 50 hours a week to providing care, as the hon. Member for Sutton and Cheam (Mr. Burstow) said. Many of those carers carry out their responsibilities despite not being in good health themselves. In fact, only 41 per cent. of those providing 50 hours or more of care per week are in good health.
There are various figures for the cost of replacing carer support, but I shall quote the Carers UK figure of more than £50 billion for England and Wales, because the Bill relates to England and Wales. As a society, we are completely dependent on that body of people, but until fairly recently their needs, views and ambitions have received little attention in public policy debates. To be fair, I must add that the situation has changed in the past decade, and especially since the current Government were elected in 1997.
Interestingly, a lot of the progress has, as today, come through private Member's Bills. Hon. Members have pointed out that the Carers (Recognition and Services) Act 1995 took us forward by providing assessments for carers, but in a fairly restricted way: first, the assessment was tied to the assessment of the cared-for person; secondly, the assessment examined only the carer's ability to continue to provide care. In 1999, the Government published their national strategy for carers, which identified many of the main issues that our carers were concerned about, including the barriers that local authorities still faced in providing help that would benefit carers as individuals.
Those issues were in turn picked up in Tom Pendry's Carers and Disabled Children Act 2000, which came into force in 2001. It requires local authorities to assess carers, at their request, without any connection being made with the person being cared for, to see whether they can continue to provide care unaided, and to identify needs that could be satisfied through its services. It also enables local authorities to pay carers and the 1058 parents of disabled children for services that they would otherwise provide, which is another important step forward.
The fact that we still have not gone far enough was revealed by separate surveys carried out by Carers UK and the Princess Royal Trust for Carers in 2002. The Princess Royal Trust for Carers report showed that only one quarter of carers surveyed had had an assessment, and that only half of those who responded even knew that they could have an assessment. Similarly, the Carers UK survey found that 32 per cent. of eligible respondents had had an assessment. Again, about half those surveyed were not aware that they were entitled to an assessment, and about one third of them did not even understand the purpose of such an assessment. Those results occurred despite the Department of Health having issued good policy guidance entitled "Ensuring Carers are aware of their Rights to an Assessment".
The Bill's objectives—ensuring that carers are systematically given information, including information about their rights, so that they can make informed decisions about their lives; ensuring that carers' health in its broadest sense is positively considered by social services; and helping to give carers more opportunities in leisure, education, training and employment—are, in the main, clearly shared by the Government. That is evidenced by various pieces of practical guidance issued by the Government, most notably by the Department of Health.
The Bill turns good Government advice that is not being followed across the whole of England and Wales into clear statutory requirements. There will be a new duty for social services to promote equality of opportunity for carers, particularly with regard to carers' health and well-being. They must examine the services that they provide to ensure that they include the necessary flexibility to allow carers to work, have a break and enter training or lifelong learning opportunities. Local authorities will have a duty to tell carers about their right to assessment, and they will be required to plan information delivery for carers. Health and social services will have a duty to promote and safeguard the health and welfare of carers, and all council departments will have a duty to work with social services to deliver the Bill's objectives, if they are requested to do so.
I am sure that I am not the only Member of Parliament who has been asked to visit a disabled or chronically sick constituent in their home to discuss home adaptation, benefits or other matters and had the door opened by a frail and stressed person whom one initially assumes is the cared-for person, only to find out as the conversation goes on that they are, in fact, the carer. Alternatively, I am sure that I am not the only MP to have had the door answered by a 16 or 17-year-old trying to get their mum's or dad's tea and do their homework at the same time. I am sure that we all feel at such times that something really must be done to help the carer as well as the cared-for. Sometimes, as the Member of Parliament or the councillor, one can help such individuals, but whenever I am involved in such a case, I cannot help thinking of the hundreds of similar cases in which help has not been provided. The Bill is designed to tackle those cases.
1059 The Bill represents a cultural change from what has gone before. Importantly, for the first time, it considers the carer as a whole person, an individual. We are moving on from defining carers solely by the role that they have taken on in caring for someone else. Carers are people whose health, well-being, education, future employment prospects and opportunities for fun should be taken into account. Through the Bill, my hon. Friend seeks to do exactly that. We should support him. Let us turn Sam's Bill into Sam's Act as quickly as we can. Then, as my other hon. Friends have said, let us ensure that it is properly implemented.
§ The Parliamentary Under-Secretary of State for Health (Dr. Stephen Ladyman)
I am delighted to be able to respond to this debate on behalf of the Government. As several hon. Members have pointed out, it has been a very good debate—good humoured, with almost complete consensus and much good will on a issue of great concern to us all. My hon. Friend the Member for Aberavon (Dr. Francis) is right to bring it before the House in the form of this Bill.
I congratulate my hon. Friend. His support for carers comes not only from his constituency experience, but from his personal experience. He understands only too well the challenges faced by carers and appreciates their needs, because of his personal experience. If, through this Bill, we are able eventually to improve the lives of carers, it will be a special memorial for his son, Sam. I congratulate my hon. Friend on bringing Sam's Bill before the House.
There has been almost total agreement on the Bill today. I am delighted that there is such strong support for carers, and I hope that nobody doubts my own personal commitment to carers and to seeing their lives improved, as well as to legislation and measures to help them. However, it is my job as a Minister to bring some realism to many of the comments that have been made today. As I address the points that hon. Members have made and express the Government's concern about some parts of the Bill, I hope that nobody will doubt my personal commitment to carers or the Government's commitment to them.
The Bill and the debate are in the strong tradition of support for carers that has been expressed in the House previously through private Members' Bills. The House and the country should be in no doubt that the Government recognise the crucial role that carers play. We do not and must not take them for granted. Carers are vital to our communities. They enable people to stay in their own homes and remain independent for as long as they wish, and also to enjoy their lives. Carers' contributions, both to our society and to those they care for, need to be acknowledged and promoted.
When my hon. Friend introduced his Bill, he mentioned the many organisations and businesses that support it. I am delighted by that, because we will need their support to implement the Bill, if enacted. I was especially heartened when my hon. Friend mentioned some of the companies that are supporting the Bill, including British Gas and BT, both of which strongly support carers in their own work. Those companies have shown that imaginative support in the workplace can not only improve carers' lives, but improve their business opportunities.
1060 We are rapidly approaching a period of full employment—as a result, I am delighted to say, of the Labour Government's work—which my right hon. and hon. Friends have dreamt about since becoming involved in politics. As we move into that period of full employment, competition for employees and for quality employees will become harder and harder, and companies that have imaginative and flexible work practices will be at an advantage to those that do not, and that includes those who have imaginative work practices in relation to carers.
Carers have huge talents. As several hon. Members have said, many people in the middle of their career suddenly find becoming a carer forced upon them. It is not their choice; they are obliged to become a carer due to their personal circumstances. These are people with huge talents, good qualifications and great experience, and it would be awful if they were to be lost to the work force.
Companies such as British Gas and BT can score by doing some simple things that do not cost very much but which encourage people to get back into the workplace. It can be as simple as ensuring that they have access to a private telephone line to make calls during the working day; it can be as simple as allowing flexible working hours, or allowing employees to take leave at short notice—simple things that make a huge difference.
§ Mr. Edwards
My hon. Friend has spoken about the contribution of companies such as British Gas, which sponsored the visit of carers whom I took to Buckingham palace some years ago, but does he feel that there is anything in the Bill that will allow companies to have flexible working hours; and if not, does he think that it might be possible to introduce such a provision in other legislation?
§ Dr. Ladyman
I am grateful to my hon. Friend for his intervention because I was just about to cover that point. The Bill does not help companies; what it does is to ensure that when councils and the health service are taking action to support carers, they consider how they can best plan those services to ensure that people can get back to work. My hon. Friend is right to say that if the Bill does not cover the need to help companies to take on carers, Members of the House and the Government will have to look at other ways of helping businesses to do those things. My colleagues in other Departments are very interested in exploring those opportunities and I am sure that they would warmly welcome any ideas that Members of the House have. Nevertheless, the Bill is a private Member's Bill and if such Bills are to get anywhere they must be fairly finely focused and fairly narrow in their intentions, so my hon. Friend the Member for Aberavon was absolutely right, when drafting and introducing the Bill, to keep it focused on a certain area of public service, instead of trying to make it too wide and thereby jeopardising its progress.
Although companies such as British Gas and BT have recognised the needs of carers and the benefits that they, as companies, can get from supporting carers, arid although their support for the Bill is very welcome, they will not pick up the costs of the Bill, so the House—and the Committee if the Bill makes progress today—must ensure that we focus on those people who will have to pick up the bills, and on where the money will come 1061 from. When we are speaking to our constituents and to people who are lobbying for changes in service, we are all sometimes guilty of thinking that all that is necessary is to pass the legislation and ask the Chancellor for the money to pay for it. I fear that is not how it works. Hon. Members should realise that if this Bill is passed, the Chancellor will come to me and say, "I hope you have the money to pay for it."
§ Dr. Ladyman
If we consider the Bill in Committee, we shall be able to explore specific costs. Several Members have mentioned the experience in Scotland as a result of implementing legislation that is similar to the clause on the duty to inform. I was delighted to learn from the Scottish Executive that their legislation has not increased costs significantly. That is the sort of information and practical experience that we must have before us if we are to allow the Bill to go forward.
§ Dr. Ladyman
My hon. Friend is right. There must be a cost-benefit analysis. All too often we are not good at doing that. As has been said, there will be huge cost benefits in correctly implementing the Bill.
§ Mr. Burstow
I shall add to the point made by the hon. Member for Kingswood (Mr. Berry). When, as we hope, the Committee is appointed and meets, will the Minister write to Committee members to set out the Government's estimates of both the costs and the benefits to inform our debates?
§ Dr. Ladyman
It will be my intention to put as much information before members of the Committee as possible so that we can have a proper, informed and constructive debate.
§ Mrs. Browning
When we talk about information and spreading it more widely so that carers are informed of key information, there is a danger that, with limited resources, and a requirement to spread information, a secretariat could be set up that would lead to the employment of many more people and a big advertising campaign that lasts all of five minutes, with the entire budget being spent on that. We should be looking at quite a low budget. There needs to be a little direction: who needs to know this, what is the information, where is it and how do we disseminate it. We do not need to employ umpteen new officials with offices and secretaries and all the rest of it. I could do it in a week for the Minister. It would be a little weekend job that I would do for nothing. In administrative terms, it is fairly straightforward and low budget.
§ Dr. Ladyman
I am sure that the hon. Lady will have many constructive suggestions for us in Committee. I 1062 shall listen to them all with care. I would not go so far as to say that I would have great confidence that she could do the work in a week. However, I am sure that she can help us to facilitate the process so that it is done much more quickly than otherwise would be the case.
I certainly agree with the hon. Lady that it is not a matter of taking on lots of managers and administrators, for example. It seems that she has missed one of the key things that it is necessary for us to do to implement the Bill. Many Members have talked about the need for implementation. I believe that the hon. Member for Caernarfon (Hywel Williams) was a social sciences teacher. We must ensure that all social workers who have to conduct carers' assessments and who will come across carers understand their duties. They must be trained so that when they encounter someone who has a care need, they automatically think, "If this person has a care need, they probably have a carer somewhere. Let's look around and find out who the carer is." We must not fall into the trap, which was mentioned by the hon. Member for Tiverton and Honiton (Mrs. Browning) and my hon. Friend the Member for Kingswood (Mr. Berry), whereby carers do not recognise that they are carers. If people do not recognise that they are carers, they will not ask for the benefits that are available to carers. If carers do not recognise that they are carers, we must ensure that social workers recognise it.
§ Mr. Burstow
The Minister is making an important point, which I endorse, about such recognition being incorporated in social workers' training. Does he agree that it is important that other professionals, especially those in the primary care team such as GPs, district nurses and health visitors, have such training and are tasked to do what he says? Perhaps he will answer the question that I asked earlier about whether the 2002 target for GPs to recognise carers has been met, or where we have got to with that.
§ Dr. Ladyman
The hon. Gentleman is right to suggest that training must extend across more professions than just social workers. It has to go right across the health service and include primary care trusts, health visitors and school nurses, for example. We can do a huge amount. Of course we are moving forward with the Green Paper, "Every Child Matters", and we must train people to ensure that we spot children who are carers—a subject that I shall return to in a moment.
It would probably not be a good idea for me to try to respond off the cuff to the specific question about the target, but I will write to the hon. Gentleman and put a copy of the letter in the Library so that everyone else knows exactly what progress has been made.
§ Mr. Caton
I am very interested in the concept of the cost-benefit analysis. Will my hon. Friend assure us that the analysis will be conducted as holistically as possible, rather than on a departmental basis. I agree with colleagues who do not foresee the Bill producing any extra cost. However, if the Government identify that there might be extra costs, either at local government or departmental level, will he weigh them against the benefits, perhaps in health terms, of getting people off some benefits and into employment?
My hon. Friend is right to suggest that such things need to be looked at holistically. We must 1063 put into practice many of the notions of joined-up government that we all too often enjoy talking about, and we must ensure that those principles apply to our analysis of the benefits.
§ Mr. David
I thank my hon. Friend for his generosity in giving way again. I want to ask him a specific question before he moves on to other points. Reference has been made to the Scottish model, and it is important, in this post-devolution situation, to learn lessons from north of the border, but we will he give a commitment to the House to publish a short paper, summarising what has happened in Scotland and highlighting the lessons to be learned?
§ Dr. Ladyman
I do not know whether I can commit to produce a paper about what has happened in Scotland. I should have to ask my colleagues in the Scottish Executive whether they would be prepared to do that—it would be presumptuous of me to write a paper about their experience —but I am certainly happy to share with colleagues, especially those who may serve on the Standing Committee, what information we gather about the Scottish experience.
My hon. Friend the Member for Stourbridge (Ms Shipley) said that the carers grant will no longer be ring-fenced for next year. The ring fence will be removed for next year, but it is still a targeted grant. A very explicit memo explains to councils what the carers grant is intended to do, and we will back that up with inspections of councils to ensure that carers are still being cared for.
I have a confession to make. As many hon. Members will know, I have occasional Stalinist tendencies, and I worried very greatly about whether it was a good idea to reduce the ring fence for exactly the reason mentioned by my hon. Friend the Member for Stourbridge. I asked myself whether carers would not get the money that they were supposed to get in future; but, in the end, I concluded that the change was necessary if we are to trust local government, if we believe in localism and if we believe that it is right for local government to make decisions based on local priorities.
We recognise the fact that local government may be able to help carers in various ways at different costs, according to their local circumstances, and it is important that we put that trust into action and give them the freedom that they need to act on their own behalf. I think that, on balance, it was right to remove the ring fence, and we will wait with interest to discover what impact that will have, but I am confident from the discussions that I have had and the clarity of the targeting that carers will still be fully supported by the Government.
Hon. Members will know that the carers grant started in 1999–2000 at £20.million. It has risen to £50 million, £70 million and £85 million, and it is £100 million this year. It will be £125 million next year and £185 million the year after that. In 2002–03, the grant—it was £85 million in that year—provided no fewer than 2,140,632 breaks for 143,231 carers. Of those who benefited from the breaks, 49,694 carers were supported with breaks by children's services—that included young carers—and 93,537 carers of adults benefited. Some 31,082 carers also received services other than breaks.
1064 Additionally, of course, we have the short break voucher scheme, which helps disabled people and their carers by delivering a service that offers flexibility in the timing of breaks and a choice of how support is provided. It gives service users and their carers an alternative to direct payment, which requires more administration and management on their part. I hope that hon. Members who mentioned ring-fencing will be reassured that significant extra money is going into the carers grant. It is still our intention that the money be spent on carers, but local councils will have the flexibility to decide exactly how to implement the system.
Several hon. Members raised the important matter of information, including my hon. Friends the Members for Ilford, North (Linda Perham) and for Kingswood, and the hon. Members for Sutton and Cheam (Mr. Burstow) and for Tiverton and Honiton. The Government continue to work with voluntary organisations and local authorities to ensure that the provision of appropriate and up-to-date information for carers is available in a variety of formats. The Department of Health is currently funding several projects through section 64 of the Health Services and Public Health Act 1968 to support the provision of information for carers. They include the Carers UK helpline, which is known as Carers Line, and carers online, which is the roll-out of standards for local information throughout the country. Ring Around Carers is a project that reaches out to hidden carers by using the power of local radio to help people to identify themselves as carers and then uses telephone conferencing as a way to bring carers together to discuss their experiences. That is especially interesting in the light of comments made by the hon. Member for Tiverton and Honiton. She said that carers often do not identify themselves as carers, so the project is one way of helping them to do that. Start Here is a project that is designed to provide accessible touch-screen information to people who need services and carers about a wide range of health and community services.
The Government have a dedicated carers' website at www.carers.gov.uk, which was launched in 2000 to provide a central point for information and signposting to relevant services. It now includes a discussion forum to enable statutory authorities to exchange information on best practice and innovation in carers' services. The Department of Health is closely involved with the office of the e-envoy in the development of the online government store, which will have a dedicated carers area that will create a one-stop shop for carers. Although the points that carers do not get the information that they need were well made—we shall come on to how we may improve that through the Bill shortly—I hope that hon. Members accept that we are doing some things to ensure that information is available and that we are trying to spread that information as widely as possible.
My hon. Friends the Members for Hendon (Mr. Dismore), for Lancaster and Wyre (Mr. Dawson) and for Stourbridge, and others, mentioned young carers, and it is important to take account of them.
My hon. Friend the Member for Aberavon correctly explained that the Bill focuses on carers of 16-plus. It is important to ensure that private Members' Bills are focused. If they try to do too much they will never make 1065 progress. That is not to say that the subject is not important, and the Government and the House will need to consider it further. I remind hon. Members that although carers' assessments apply only to 16-plus carers, a young carer can be considered as a child in need. Social workers assessing adults should be aware of the possibility that children in the house may be providing informal care and should take their needs into account.
The national strategy for carers sets down specific commitments to improve support for young carers, including improving the education of GPs, primary health care teams and social workers on the needs of young carers. Under the quality protects programme, the Government framework for the assessment of children in need and their families, published in 2000, indicates that young carers should not be expected to carry out inappropriate levels of caring, which have an adverse impact on their development and life chances. Services should be provided to promote the health and development of young carers while not undermining the parent. It is important to remember that such assessments are not optional for social services.
As part of a section 64 project, the Department of Health has funded the Children's Society to develop the young carers initiative. The key outcomes of the project are to consult young carers directly about their views and needs relating to current legislation and guidance, and, following that consultation, to develop a database and website strategy and to produce a practice guide and resource pack. We are also working with Connexions to help 13 to 19-year-olds and with other organisations to improve the range of services for young carers.
§ Mr. Burstow
I have listened carefully to what the Minister says about the Government's work on child carers. Does he, as a Minister in the Department of Health, have the policy lead on young carers or is it the responsibility of the Minister for Children in the Department for Education and Skills? If that responsibility lies with him, will he undertake to talk to his colleague in the DFES about its drafting of child protection legislation to ensure that that addresses some of the concerns raised?
§ Dr. Ladyman
My right hon. Friend the Minister for Children has the lead in respect of the delivery of social services and education services for children. I have responsibility for children's health. The needs of young carers fall into both our portfolios, which is why we work closely together. We meet several times a week and constantly discuss the cross-departmental issues in respect of children. Although a bit of the issue falls into both our portfolios, the hon. Gentleman can be assured that we are tackling the problem in a joined-up way. I shall certainly ensure that my right hon. Friend is aware of his comments. I know that she is aware of the needs of young carers.
The hon. Member for Tiverton and Honiton made some important points. She said that had her child's care needs been properly met, the burden on her as a carer would have been much reduced. That is true. I take that as a given and we should get that message out to the field. However, it must not be assumed—I know that she 1066 did not do this, although her words could have been read in such a way—that the only way to meet the needs of a carer is by addressing the needs of the cared-for person.
§ Mrs. Browning
The Minister is right. I did not intend to say that that is the only way to meet the needs of the carer. I was merely flagging up the fact that underlying the needs of carers are the needs of the cared-for person. If their needs are not properly met, the person who often carries the burden for that is the carer.
§ Dr. Ladyman
The hon. Lady is right. I heard her speech, and there have been few times when she has spoken in the House, especially on these issues, that I have not wondered why she is not on the Labour Benches rather than the Conservative Benches—no greater compliment can I pay her. She was right to encourage professionals to use their imagination and to think out of the box. We need to get that over to them.
My right hon. Friend the Member for Coatbridge and Chryston (Mr. Clarke), who apologised to me for being unable to return to the Chamber for the closing speeches, made several important points. While he was making them, I had a quick look in "Dod's" at his background and noticed that he has an interest in astrology. When he started asking me lots of questions about what the future holds, I was tempted to intervene to ask him to tell me. He was right to identify the need to address various issues such as how the legislation will work, what it will do and how much it will cost. I shall return to that.
My right hon. Friend also asked some specific questions about the impact of direct payments and the Government's attitude to them. I believe that direct payments can fundamentally overhaul the way in which we deliver all social care services, both to those who are cared for and to their carers. I have met people who have severe physical disabilities, those who have severe learning disabilities and others with moderate support needs who tell me that receiving direct payments instead of direct care has transformed their lives. We need to translate that to carers.
Carers have the option of receiving a direct payment. That takes us back to the point about training people who advise carers. It is a duty on councils to make a direct payment. It is their duty not just to offer a direct payment but, under legislation, to make a direct payment, and doing so should be councils' first choice. People are supposed to opt out of a direct payment scheme not opt into it, but very few local authorities seem fully to have taken that message on board and are therefore not making the option clear to people who use care services.
§ Mr. Edwards
My hon. Friend mentions the need to train people who advise carers. Does he therefore agree that it would be important to include as standard in all training and education programmes for social workers, doctors, nurses, occupational health workers and health visitors an element about the needs of carers, and information on the legislation, policy and duties on local authorities? What input can my hon. Friend have into those training programmes to try to bring that about?
§ Dr. Ladyman
We can do a number of things. For example, there is the Social Care Institute for 1067 Excellence, whose job it is to identify best practice and to ensure that it is disseminated throughout the sector. We can work with that body. In a moment, I will talk about a number of specific issues that we have taken up concerning the roll-out of direct payments. We have established the direct payments development fund and built a number of other services around the scheme to try to get the message over and to help roll out the scheme.
In addition, we are in the middle of a series of national conferences, at which the Department of Health is explaining to people from local authorities and the voluntary sector their duties and best practice in making direct payments. I have recorded a speech for those conferences in which I express my support for direct payments. It is being played at all the conferences around the country, and I will be appearing live at the one in London—so they have that to look forward to. I have no doubt that the touts will already be out selling tickets. Therefore, our commitment as a Government to getting the message over cannot be doubted. We have set up a national direct payment steering group comprising representatives from across Government, local government and voluntary organisations, including Carers UK, to monitor, comment on, and have an input into national policy development, particularly the progress of the development fund. The take-up of direct payments in each local council is a key performance indicator this year, and has already proved to be a powerful incentive to local councils to think about direct payments more imaginatively. The performance indicator shows that in England in 2002–03—I apologise to my hon. Friends and all Welsh colleagues in the House, as I do not have the figures for Wales—an average of 23 people per 100,000 received direct payments. There was, however, considerable variation across councils, suggesting that many of them could make significant improvements. In 2002, there was a 400 per cent. increase on the previous year's take-up. Although we started from a low base, progress in driving forward the use and take-up of direct payments is improving all the time.
The hon. Member for Banbury (Tony Baldry) spoke about implementation, as did several other hon. Members. I was fascinated to hear the results of his survey, and I would be grateful if he gave me a written summary. A key tool for the Government in ensuring the implementation of both our existing policies and the Bill, if it is enacted, is the inspection and performance assessment frameworks. The hon. Gentleman mentioned, as did several other hon. Members, carer's allowance and funding for carers. He said that carer's allowance stops when someone starts to claim retirement pension. The explanation, of course, is that carer's allowance is a benefit to replace lost income. Someone who is caring is not working. Consequently, they lose income, so carer's allowance is provided. The state pension is also a benefit to replace lost income when someone retires. An enduring rule of the benefit system for several decades under Governments of all political persuasions is that people cannot receive two benefits for the same purpose. Hence, when someone 1068 takes up a state pension on retirement they lose their carer's allowance. The carer's allowance, however, is not the only support that we provide for carers.
§ Mr. Berry
My hon. Friend will appreciate that we have all heard that argument on countless occasions. We understand the logic, but it is simply based on the historical circumstances in which the carer's allowance was established. The issue is whether or not carers over 65 should get increased support for their caring activities, not least because if they did not undertake them it would be far more expensive for the Government to fund them.
§ Dr. Ladyman
My hon. Friend has made those points before, and I am aware of his feelings on the issue. However, carer's allowance is not intended to cover the costs of caring, which ought to be met by other means and benefits. If the costs of providing care for an individual are not being met, one needs to look holistically at the package of costs for both the cared-for person and the carer to make sure that there is not a net cost to the carer.
§ Dr. Ladyman
It would depend on the level of care that was needed if someone was over 65, but an obvious resource is attendance allowance, which can be paid at both lower and higher rates, depending on whether the older person requires care at night.
In addition, older people with care needs are also entitled to a carers assessment and they are entitled, if they want to, to ask for those care needs to be provided for by a direct payment rather than as direct care. There are several different methods for ensuring that household income is maintained in that process. However, I encourage my hon. Friend to take up those issues with a Minister from the Department for Work and Pensions and leave us poor old Health Ministers alone.
§ Mr. Edwards
I am grateful for the advice that my hon. Friend the Minister has given to me and my hon. Friend the Member for Kingswood on taking up the matter with Ministers at the Department for Work and Pensions, which we most certainly will, but, significantly, the one thing that he forgot to mention—perhaps he is not aware of this—is that there is an element for carers in pension credit. One of the problems with pension credit, however, is that a lot of people do not realise that they are eligible for it. If they do not realise that they are eligible, many carers might not realise that they are eligible for the carer's element as well. Would it not be more helpful to have a better package overall to meet the financial needs of carers over 65, rather than the hotch-potch of different benefits, which many people are not aware of?
§ Dr. Ladyman
It is not that I am not aware of this matter, but that I was coming to it. I was about to point out the fact that those benefits are available and to link that to the Bill because, once again, we are dealing with 1069 one of the reasons why we need to improve the information flows to carers, whatever age they are—there is a panoply of benefits. My hon. Friend can argue that they are too complex and he can take that argument up with the Department for Work and Pensions, but, from our point of view and from the point of view of today's debate, I would argue that this matter highlights one of the reasons why we need to consider some principles that are behind the Bill introduced by my hon. Friend the Member for Aberavon. That will enable us to ensure that we are providing such information to people so that they can make a claim for those benefits to which they are entitled.
I suspect, for example, that if we were to do a survey of all our constituents and work out how many of them are entitled to attendance allowance but are not claiming it, we would probably be surprised by the number. The Department for Work and Pensions works had to try to encourage people to apply for attendance allowance, and in these areas my hon. Friend's Bill will be important in getting the message out.
The Minister's hon. Friends have been, as he put it, getting at him slightly on the point about benefits. Will he reflect, perhaps after the debate, on the fact that one of his arguments for not doing anything on invalid care allowance for over-65s is, "Things have always been done this way."? Until quite recently, the Government were deploying that argument in respect of hospital downrating. Perhaps it is time for the same damascene conversion as has happened on hospital downrating, which would allow the over-65s to benefit from a worthwhile benefit such as carer's allowance.
§ Dr. Ladyman
My hon. Friends are not getting at me. They are championing those people who have support needs. That is what they always do, and I am delighted that they do it. The Government do not undergo damascene conversions either. It is just that we recognise that we cannot fix the entire world in a day, or even a year, so we eat the elephant a mouthful at a time. Hospital downrating is one of the issues that we came to as soon as we could. Each of the measures that we are discussing today—I have no doubt—will be reviewed in due course and improved as finances and opportunity become available.
For the information of the House, the number of people receiving carer's allowance has risen from 367,000 to 408,000 over the last five years, which is an 11 per cent. increase. That includes 20,000 pensioners. Expenditure has improved significantly as well, so the message is starting to get out there and people are starting to take up carer's allowance, but perhaps not at the rate we would like them to. We will continue to work on that.
The hon. Member for Caernarfon, who is a former social worker, also raised attendance allowance and the lack of information. I have agreed that he was right to do so. My hon. Friend the Member for Reading, East (Jane Griffiths) spoke movingly of her constituents. The notion that someone can be told on giving birth to a child effectively to put her away and have other children horrifies us these days, but that was the attitude many 1070 years ago. We have to move away from that attitude as dramatically and quickly as possible. She was right to highlight that experience.
The hon. Member for Sutton and Cheam mentioned home care, and he acknowledges that home care hours have increased, although I have recurrent discussions with him over the significance of targeting home care on fewer households. I continue to take the view that it is right to target it on the households where it can do most good. As a result of that approach, we have seen a 30 per cent. increase in the number of people receiving intensive home care and therefore being able to remain in their own homes and cared for by individuals there, rather than having to go into residential or nursing care. The facts speak for themselves, and show that that policy is working.
The hon. Member for Sutton and Cheam also suggested that carers assessments might discount the level of care provided to the cared-for person because of the presence of a carer. That is bound to happen, because the presence of a carer is taken into account when undertaking the assessment, but one purpose of the Bill is to ensure that while we take the carer's presence into account, we also take into account their needs. The presence of the carer should not cause a discount to the extent that the carer loses their own life, and cannot go out to work or to study. My hon. Friend's Bill introduces that important principle.
The hon. Member for Sutton and Cheam was right to raise certain concerns over clause 1(1), and we shall return to that in Committee because the provision needs to be properly focused.
My hon. Friend the Member for Caerphilly (Mr. David) mentioned a case study involving a carer who returned to study, and then saw herself as being worth something. What struck me about that story was not the fact that care had to be organised to enable that carer to return to study; it worried me that she did not think that she was worth anything until she was studying. We must get over to the people who provide care how much we appreciate them and how much they are worth to us and to the person for whom they care, as well as help them to expand their lives, for example, by returning to study.
I am delighted that the hon. Member for Wycombe (Mr. Goodman) committed the official Opposition to supporting the Bill, at least in principle. We will need to work together to improve it, and I shall say a little more about that in a moment. My hon. Friend the Member for Aberavon, the Committee and the Government will need the help of the official Opposition to ensure that what emerges from Committee is a Bill that we can all support.
The hon. Member for Wycombe mentioned the Scottish experience in respect of clause 3. My information is that Scotland will tell us that the provision will not lead to a huge increase in costs to councils. That will provide reassurance as we move forward with the Bill.
My hon. Friend the Member for Monmouth (Mr. Edwards) reminded us that none of us knows what is round the corner. Like him, I am afraid that I have never had a private Member's Bill. Before I became a Minister, I put my name in the hat every year but never saw it appear at any position on the league table, let 1071 alone one that would allow me to have a debate. I know that my hon. Friend will work closely with us on this Bill, so he will be able to make a contribution.
I should like to take up the point that my hon. Friend made about none of us knowing what is around the corner, and to encourage all hon. Members to consider what would happen to one of us if we were forced into a caring role at short notice. How would we reorganise our lives? I am very fortunate never to have been in that position. It is difficult enough to combine ordinary child care with professional duties. My little girl spends half her life sitting quietly at the back of meetings while I try to combine my official duties with some child care. But it must cause a devastating change in a person's life suddenly to find that they have intensive care duties placed upon them out of the blue.
§ Mr. Edwards
On the comments that the Minister made about my contribution, I am well aware that he does not have responsibility for my constituency or for Wales. What discussions has he had recently with Jane Hutt or other Ministers in the Assembly about this Bill and other legislation relating to carers? If he has had none recently, what discussions does he intend to have in the future?
§ Dr. Ladyman
I can assure my hon. Friend that my officials are in close contact with officials from the Wales Office, and that I am in communication with Jane Hutt about the Bill. I am aware of her support for it and that of the leadership of the Welsh Assembly, and we shall work hard with them to ensure that the changes that we make to the Bill in Committee will not compromise that support. There is a strong Welsh flavour to the Bill, from my hon. Friend the Member for Aberavon and other hon. Members all round the Chamber, and it would be disastrous to end up with a Bill that was good for England but had no benefits for Wales. We shall work hard to ensure that that does not happen.
My hon. Friend the Member for Gower (Mr. Caton) drew on his experience as a constituency MP to highlight the fact that there are carers in every household, and that many of them are frail and have severe care needs of their own.
We have established that support for carers must revolve not only around the needs of the person being cared for but around the carer's own needs. That support must ensure that they are able to make choices as individuals. It is also important to ensure that those who want to care are able to do so. It is equally important to make it possible for those who wish to do so, to combine normal everyday activities such as work and hobbies with caring. Providing care for those we love should be a choice rather than a chore. Thus far, we are all on common ground. I have no doubt that a desire to achieve these objectives is shared by us all.
However, before we get carried away with good intentions, I now have to put my ministerial hat on and become a bit of a party pooper. There are four things that we, as legislators, must take into account. First, any new legislation must fit within the framework of the modernisation of public services. We cannot say to councils that they must plan their services based on what they and local people believe they need, and then tell them what to do and how to do it. Councils cannot be 1072 micro-managed from Whitehall either by Ministers or by well-intentioned private Member's Bills. We have to ensure that councils have a general duty to care for carers, but then allow them to fulfil that duty in ways that best meet local priorities.
Secondly, new legislation must complement existing laws in terms of substance and approach. Poor practice is unacceptable, but let us not forget that legislation is about changing the law, not about repeating it. Improving practice in the field relies on other mechanisms, such as inspections and the performance assessment frameworks. Thirdly, any new legislation should be able to deliver real and concrete change without placing disproportionate burdens on local councils.
Fourthly, the change that we bring about must be worth while, deliver real improvements and build on the existing legislative foundations. Thanks to earlier work and support by Members of this House and the other place, I am glad to say that those foundations are strong. The Carers and Disabled Children Act 2000—which was itself a private Member's Bill, introduced by my noble and very good Friend, Lord Pendry of Stalybridge, when he sat in this House—has developed carers support beyond that established by the Carers (Recognition and Services) Act 1995. It took the key step of recognising carers as separate individuals with sometimes quite different needs from those of the person for whom they care.
By enabling carers to request an assessment of their own needs and enabling councils to support carers through services, direct payments and vouchers, the Act gave carers the ability they now have to make real choices about their lives. That flexibility is fundamental in enabling them to pursue their own lives and interests as well as caring.
Of course, having established the general statutory framework within which councils must meet the needs of carers, and having devolved to them the responsibility to meet those needs in ways that best suit individual and local circumstances, we have a duty to assess how well they are fulfilling those duties. We do that through the performance assessment system. Some Members may know that my Department is currently developing a measure to assess the value and impact on carers of the support provided at local level. That will make it clear to councils what their key priorities should be, and enable Government to see where carers are being well served and where they are not.
Given the statutory framework we have, and given what we can do through performance assessment to ensure that the needs of carers are met, we must now ask whether we need any more laws in this area. We know that caring can affect both the health and the financial status of carers and their families. Access to employment opportunities both helps to maintain self-confidence and prevent people from falling out of the labour market. The Government are committed to enabling carers who wish to work to do so, as well as encouraging employers to develop carer-friendly employment policies and encouraging councils to provide more flexible support services that take account of carers who work.
My hon. Friend's Bill seeks to address some of those vital concerns for carers and the wider economic environment, but—this is where I shall start to worry 1073 him—I am not convinced that, as it stands, it meets my four tests. While the Government agree with the general intention that carers be supported to ensure their own health and well-being through assessment and access to better information, we feel that the provisions as currently drafted would not necessarily deliver that outcome. Parts of the Bill duplicate existing legislation, and it is difficult to see exactly what others will actually mean for councils or carers. For example—this was raised by the hon. Member for Sutton and Cheam—the scope of clause 1(1) seems to me uncertain, and the clause does not make clear what social services would be required to do if charged with that duty.
§ Mr. Goodman
Given the reservations that the Minister is expressing, do the Government intend to improve the Bill in Committee with a view to its enactment?
§ Dr. Ladyman
Yes. I shall encourage the House to give the Bill a Second Reading so that we shall be able to do that very thing. Whether it is given a Third Reading will depend entirely on whether we are successful in Committee—although I know that my hon. Friend the Member for Aberavon is committed to working with us to make appropriate changes so that we can support it. I have no doubt that he will confirm that if he is given an opportunity to speak again today.
The scope of the regulation-making power in clause 1(3) is particularly unclear. We recognise that it is a legitimate aspiration that councils should change their attitudes to carers, but as the Bill stands, it is unclear what that would mean to social services departments in practice. If we are to pass the Bill, we shall need to ensure that it is focused and clear in its application and tailored to the exercise of social service functions.
Perhaps of more concern to us is the fact that some components of the Bill go against everything that the Government believe in, in terms of local autonomy and decision making. It is crucial for councils to be able to make strategic decisions about what best suits their populations and employees. They must be able to respond to individual needs.
We should not and must not be too prescriptive. If the Bill were to continue in its present form, clause 2 would mean central Government dictating to councils the form and content of their community plans. This is not how we envisage modernisation of the health and social care systems. Local authorities already have a duty to participate in the preparation of a plan. We are therefore considering whether we can ensure health bodies' participation through existing powers in section 28 of the Health Act 1999, in order to deliver the best outcome for carers. It may be possible to come up with an alternative but effective way to meet my hon. Friend's objectives. We will doubtless discuss such possibilities if the Bill proceeds to Standing Committee.
It is important to remember that councils already have considerable responsibilities in law to support carers, and we must not lose sight of the role of work force training and best practice. More legislation will not necessarily change people's behaviour. Guidance and training in best practice is undoubtedly one of the 1074 most effective ways to ensure that those involved are aware of their responsibilities. A good example is the guidance issued with the Carers and Disabled Children Act 2000, which gave a very clear message: carers assessments should include the impact of caring on their working lives. For many carers, this is the key to addressing their support needs. No assumption should be made that people will give up work to care. I shall repeat that message, because many councils throughout the country need to hear it: no assumption should be made that people will give up work to care. We are also exploring the use of existing powers relating to the conduct of carers assessments in a way that will complement existing guidance and further support carers.
Carers must be offered as a priority the possibility of continuing to work, in order to maintain their confidence and well-being. This is particularly true when they are unexpectedly thrust into the role of caring by events outside their control. That happens all too often when people are discharged from hospital. There are many examples of good practice guidance to support both the NHS and councils in performing this duty. Clause 5 also gives me cause for concern, as it seeks to separate carers from the population in terms of recognition by the health service. That not only prejudices the generality of the clause, but further separates carers and locks them into their caring role.
But before my hon. Friend gets the idea that I am being too negative about his Bill, let me reassure him that parts of it have the potential to result in real change for carers. One such is clause 3, on the duty to inform. As a Government, we continue to work to ensure that everyone gets what he or she is entitled to in terms of rights and benefits. We know that without an assessment, carers are often unaware of the support available to them. It is important to recognise that there is an abundance of best practice information and guidance for people working with carers. This information is produced, often in partnership, by central Government and local government, as well as by the voluntary sector. However, it would seem reasonable for the Bill to ensure that the few who do not routinely inform carers of their rights follow the practice of the majority who do.
Another of the Bill's commendable aims is to ensure that councils are able to work more readily in partnership with their colleagues across local government and in the NHS. We know that some partners in health and social care have not been as engaged with carers' issues as we would like; this provision will give social services a lever with which to influence their priorities. Clause 4 is intended to foster joint working to deliver a more cohesive service for carers, and with some work, it will do just that. It seems a very wide provision, but it is modelled on section 27 of the Children Act 1989.
In summary, the Bill has the potential to make a real difference for carers, and it could be remodelled to deliver that change in a practical way. I want to release that potential, and to work with my hon. Friend the Member for Aberavon to that end. I am very hopeful that we will be able to work together, along with others who will join us in Committee, to achieve a positive outcome. As it stands, the Bill gives me some real cause 1075 for concern. I understand the sentiments and intention behind it, which the Government accept and welcome, but—this is a genuine reservation—this work.
I therefore hope that the House will give my hon. Friend's Bill a Second Reading, and that it will allow him to take it into Committee, where we can do the necessary work and make the amendments that we have identified to ensure that it delivers real changes for carers. If we succeed in that objective, the Government will be delighted to support the Bill without reservation on Third Reading. I can assure my hon. Friend that, if that is the position that we reach, no one will be happier than me.
I congratulate my hon. Friend once again on introducing the Bill. If he receives the leave of the House to speak again, I hope that he will confirm his willingness to work with the Government to make the necessary amendments. If we do that, I can see Sam's Bill becoming Sam's Act and making a real difference to carers' lives.
§ Dr. Francis
With the leave of the House, I rise to thank right hon. and hon. Members for their support today, particularly those who have spoken so eloquently and movingly of their experiences. I thank the hon. Member for Wycombe (Mr. Goodman), the official Opposition spokesman, for his warm support. I also 1076 thank the spokesmen for the Liberal Democrats, Plaid Cymru and the Scottish National party. Ulster Unionists have also offered their support. I also thank all those people outside the House for sending their letters and e-mails of support over the past couple of weeks.
I have learned a great deal from our debate today, particularly about the broad definition that we all have of cost and benefit in supporting carers. I am delighted that there are so many supporters of Oscar Wilde's definition of the philistine as someone whoknows the price of everything and the value of nothing".Carers outside the House will have listened carefully to our debate and they will know that carers are beyond price. That is the House's view, and we are beginning, at last, to value carers as we should.
I thank the Minister for his response. I can assure him that, as the Bill progresses and we debate the issues further, the result will be that he and the Government will be able to support the Bill on Third Reading. Everyone outside the House, particularly carers arid carers' organisations, will be delighted with that outcome. We all look forward to the Bill becoming law.
§ Question put and agreed to.
§ Bill accordingly read a Second time, and committed to a Standing Committee, pursuant to Standing Order No. 63 (Committal of Bills).