§ Question proposed, That the clause stand part of the Bill.
§ The Chairman of Ways and Means (Mr. Michael Morris)
With this, it will be convenient to consider the following: New clause 1—Assessment of ability of carers to provide care: England and Wales—
—(1) Subject to subsection (3) below, in any case where—
§ (2) Subject to subsection (3) below, in any case where—
- (a) a local authority assess the needs of a disabled child for the purposes of Part III of the Children Act 1989 or section 2 of the Chronically Sick and Disabled Persons Act 1970; and
- (b) an individual ("the carer") provides or intends to provide a substantial amount of care on a regular basis for the disabled child,
§ (3) No request may be made under subsection (1) or (2) above by an individual who provides or will provide the care in question—
- (a) by virtue of a contract of employment or other contract with any person; or
- (b) as a volunteer for a voluntary organisation.
§ (4) The Secretary of State may give directions as to the manner in which an assessment under subsection (1) or (2) above is to be carried out or the form it is to take but, subject to any such directions, it shall be carried out in such manner and take such form as the local authority consider appropriate.
§ (5) Section 8 of the Disabled Persons (Services, Consultation and Representation) Act 1986 (duty of local authority to take into account ability of carers) shall not apply in any case where—
- (a) an assessment is made under subsection (1) above in respect of an individual who provides the care in question for a disabled person, or
- (b) an assessment is made under subsection (2) above.
(6) In this section—
community care services' has the meaning given by section 46(3) of the National Health Service and Community Care Act 1990;
child" means a person under the age of eighteen;
disabled child" means a child who is disabled within the meaning of Part III of the Children Act 1989;
disabled person" means a person to whom section 29 of the National Assistance Act 1948 applies;
local authority" has the meaning given by section 46(3) of the National Health Service and Community Care Act 1990; and
voluntary organisation" has the same meaning as in the National Assistance Act 1948.
|"Carers (Recognition and Services) Act 1995 (c.00)|
|Section (Assessment of ability of carers to provide care: England and Wales)||Assessment of ability of carers to provide care.".'.|
And the following amendment thereto: (a), at end of subsection (2) insert—
'(2A) Where the carer making a request for an assessment under subsection (1) or (2) above is unable to communicate either orally or in writing by reason of any mental or physical incapacity, it shall be the duty of the local authority to whom the request has been made to take such steps as are required to enable that person to provide the information necessary for a proper assessment of his ability to provide the care in question.'.
§ Clause 2 stand part.
New clause 2—Assessment of ability of carers to provide care: Scotland—
' —(1) Section 12A of the Social Work (Scotland) Act 1968 (duty of local authority to assess needs for certain services) shall be amended as follows.
(2) After subsection (3) there shall be inserted—
(3A) Subject to subsection (3B) below, in any case where—
§ (3B) No request may be made under subsection (3A) above by a person who provides or will provide the care in question—
- (a) by virtue of a contract of employment or other contract; or
- (b) as a volunteer for a voluntary organisation.
§ (3C) Section 8 of the Disabled Persons (Services, Consultation and Representation) Act 1986 (duty of local authority to take into account ability of carers) shall not apply in any case where an assessment is made under subsection (3A) above in respect of a person who provides the care in question for a disabled person."
(3) In subsection (8), after the definition of "medical practitioner" there shall be inserted—
'person' means a natural person.".'.
And the following amendment thereto: (a), after new subsection (3A)(b) at end insert—
(3AA) Where the carer making a request for an assessment under subsection (3A) above is unable to communicate either orally or in writing by reason of any mental or physical incapacity, it shall be the duty of the local authority to whom the request has been made to take such steps as are required to enable that person to provide the information necessary for a proper assessment of his ability to provide the care in question.'.
§ Mr. Malcolm Wicks (Croydon, North-West)
The grouping of the clauses and amendments represents the heart of the Bill. While they specifically relate to England, Wales and Scotland, the policy intentions have implications for Northern Ireland, which we shall return to later. In considering the Bill and the amendments to it, one increasingly recognises the complex nature of policy and of the legislation. It is complex for three reasons, which I should like to set out for the Committee.
First, the Bill relates to a formidable array of past legislation, certainly for England and Wales and also for Scotland and for Northern Ireland. For England and Wales, there is the National Assistance Act 1948, the Chronically Sick and Disabled Persons Act 1970, the Children Act 1989 and the National Health Service and Community Care Act 1990. Other legislation is also relevant, so the matter is complex legislatively.
Secondly, the matter is complex because the policy intentions behind the Bill as originally drafted—and as it is today—are that it should apply to carers throughout the United Kingdom. I have met carers in Northern Ireland, Wales, Scotland and England and, although all individuals vary, their needs in many respects are the same. It would be totally wrong if the legislation could not apply to the whole of the United Kingdom, either directly or by negotiations with the Northern Ireland Office, so that it could apply there also. Given the legislative background in Wales, Scotland and Northern Ireland and the variations between our nations, we are dealing with a complex matter.
The third reason why the Bill is complex, and rightly so, is that we seek to include all carers. Carers vary enormously. While in the popular mind we perhaps think of an adult, often herself or himself quite elderly, looking after a frail, elderly relative, and while such people may represent the bulk of caring by family carers, two other groups need to be included in our deliberations and, more important, in our legislation.
First, there is a group of parent carers—parents who look after children with mental or physical disabilities. They often have to undertake major burdens. It is our intention that they will be included in the legislation. They account for the amendments that I have tabled today. Another group that has to be included is children who are carers. They are a newly recognised group. The Minister and I had an opportunity yesterday to meet a small delegation of carers from various parts of the country. They had an opportunity to talk with us about their needs. I know that all hon. Members want to ensure that we develop social policies and legislation which recognise that group of children.
For the reasons that I have given, we are dealing with a complex matter and we need to get the legislation right. Therefore, I make no apology that during our negotiations and discussions, not least with the Department of Health 425 but also with the Carers National Association, we saw the need to amend the original Bill heavily today. That is why later I shall invite hon. Members to delete some clauses and to approve new clauses.
One of the reasons why we found the legislation complex is that inevitably in British government and political life we tend to compartmentalise different areas of policy. The Bill seeks to bring together community care and children's welfare. The National Health Service and Community Care Act 1990 deals mainly with community care. The Children Act 1989 deals with children's welfare. Our original thought was simply to amend the National Health Service and Community Care Act, but if we had done so, the Bill would not have been a vehicle for dealing with the welfare needs of children—either those needing care or those who are carers.
Therefore, in this legislation we want to deal with family care in the round. We want to integrate the different issues. I well recall as a young student of social policy at the London School of Economics and later at York university that, in the era of the Seebohm report, an attempt was made to develop a family service. Since that time, we may have become more specialised again. There is always a tension in social services between the generic and the specialised. The Bill is an attempt to move back to the more general. Human beings and carers tend to have the habit of coming in the round. Departments and legislation sometimes seek to compartmentalise their needs, and therefore do not recognise them fully.
In grappling with the complexities, I have debts of gratitude that I should like briefly but sincerely to acknowledge. The idea of the legislation came first from the Carers National Association, one of the leading voluntary organisations in social welfare. I pay tribute to the director, Jill Pitkeathley, who more than any other person in this country has put carers on the map. I also pay tribute to Francine Bate of the Carers National Association, who has acted as my major guide and mentor and negotiator with the civil service and others on the Bill. I also acknowledge Jenny Jeger, the honourable parliamentary adviser to the association, and its legal adviser, Luke Clements. Many staff members have spent much time on the Bill on my behalf and on behalf of the House. Many other voluntary organisations have contributed.
I am also grateful to the Under-Secretary of State for Health, the hon. Member for Battersea (Mr. Bowis), for the way in which he has approached the Bill. Right from the start, people said to me that private Members' Bills seldom got on to the statute book. They said, "I guess you are just trying to raise the issue of carers to get it noted for a few days." I said, "No, we are serious about having a recognition of carers stamped on to our statute book." I approached Ministers and asked seriously to discuss the matter. We have seriously discussed it. Sometimes the discussions were difficult because of the complexity of the process, but I am grateful to the Minister and his officials, and to parliamentary counsel, who has more than helped me draft the complex amendments to the Bill.
I also thank the Leader of the House, who from an early stage took an interest in the Bill because of his past commitments. Although Leader of the House, he is to some extent Minister of social services emeritus, I believe. I also thank my Front-Bench colleague, my hon. Friend the Member for Wakefield (Mr. Hinchliffe), for 426 his keen encouragement of my efforts and his advice and expertise. He may seek an opportunity to say later in the debate that the measure reflects the development of policy in the Labour party and his strong personal commitment to the needs of carers.
We are dealing with a formidable number of people. According to the general household survey data, which are now somewhat out of date and therefore probably understate the numbers, there are some 6.8 million carers throughout Great Britain. At one end of the continuum, some may care for a few hours a week. At the other extreme, I have met people who care literally around the clock for a loved one—for someone with dementia or someone with a major physical handicap.
I am particularly struck by the fact that an estimated 1.5 million carers provide care for 20 hours a week or more. It is often considerably more. It is certainly the policy intention of the Bill to target that group of carers who carry the major burden. That caring army of 1.5 million people is a larger labour force in our welfare society than the entire labour force of the national health service and social services departments combined.
Much thought has been given to community care policy in this country. Despite many, often significant, differences of party political opinion, there is major consensus that community care is the right policy, but that we need to think hard about how to make it not merely a policy statement but a reality.
The White Paper "Caring for People", published in 1989, contained six key objectives on community care reform. One of them related to carers.to ensure that service providers make practical support for carers a high priority.The White Paper stated:Assessment of care needs should always take account of the needs of caring family, friends and neighbours.That was a key objective, but it was not included as a legal obligation in the Act of Parliament.
I should note that the Department of Health issued guidance to social services authorities, which stated clearly:Carers who feel they need community care services in their own right can ask for a separate assessment.This could arise if the care plan of the person for whom they care does not, in their view, adequately address the carer's own needs".In that guidance, the policy intention behind my Bill—to enable carers to have their own assessment of needs—was spelt out, so why do we need the Bill? Simply because, despite much good practice from local social services departments, most carers are not being recognised by departments and only a minority have received a separate assessment.
The Carers National Association sponsored an important report entitled, "Community Care: Just a fairy tale?" by Norman Warner, who was a Department of Health official at one stage and later became a director of a social services department. His survey found that only 13 per cent. of carers received a separate assessment, and nearly 80 per cent. felt that community care reforms had made no difference to their lives. Indeed, 8 per cent. considered services to have got worse.
427 In my discussions with carers throughout Great Britain, to whom I listened before deciding on the amendments, many complained, although carers are not a complaining group, that they were not being recognised. In Northern Ireland, a woman caring for three people told me:No-one ever asks, how are you?In my borough of Croydon, a carer told me:
The thing that makes me so angry is that no-one ever asks. No doctor ever says "Do you need help? Have you had any sleep?'There is now some concern that, because of resource constraints, many hard-pressed social services departments are using the existence of a carer to withdraw services from the cared-for person. I have come across examples. Scope, which was formerly the Spastics Society, has also produced examples of how services can be withdrawn. To quote one example from its report, "Disabled in Britain", which was published last year:Home help service (was) taken away when I got married. My husband also has a disability (but) it was assumed that he would take on the role of home help … We used to have a district nurse for help with a bath—that stopped when I got married. The point is that no consideration is taken about my husband's disabilities.To quote another example:I have had home care withdrawn because my mother and father are regarded as providing sufficient care—my 78-year-old mother is in the early stages of senile dementia and my 80-year-old father has Parkinson's Disease—I now have to rely on friends for help.Sadly, the fact that a person who needs care has a family member who is acting as carer is sometimes used as an excuse to deny services—it is still happening. That is wrong. It is not recognition, but the reverse, and the Bill aims to end all that.
What do carers want? If one listens to them and considers the extraordinary role that they play in our community, the remarkable thing is how modest their demands are. Sometimes I think that they are far too modest. They willingly continue in their role of carer and ask for very little. According to research commissioned by the Carers National Association, however, 90 per cent. of carers surveyed agreed with the statement:Social services should be required by law to assess carers" needs separately.That is the intention behind my Bill.
On the detail of the amendments, hon. Members will see from the amendment paper that I want to delete the key clauses and to establish new ones. It is important that I explain why. It has become apparent that substantial amendments will be necessary to ensure that the Bill places on the statute book the policy intentions behind it.
New clause 1 is an example. As I stated, we need to cover the whole of the United Kingdom. I referred to the complex web of legislation that governs the field in the different countries of the UK, and I know that hon. Members would want to ensure that all carers are covered by the Bill's policy intentions. Because of the different legislative arrangements, it has been helpful to draw on the expertise of parliamentary counsel.
New clause 1 would withdraw our original definition of "disabled person". I am advised that that would not enable parent carers of disabled children to be included and that the term "disabled person" might not have applied to the care of a frail elderly person. By means of 428 new clause 1, we want to include more carers in the measure rather than exclude carers, so it is a positive rather than a negative amendment.
When we first considered some of the issues, we were struck by the fact that it was difficult to legislate. At one stage it seemed that we would have serious difficulties in including parent carers in the Bill. The good news is that, by discussing the matter positively with the Minister and his colleagues in the Department of Health, we have managed, through new clause 1, to ensure that parent carers—those providing regular and substantial care to disabled children—are covered, as are all other carers of people being assessed under section 47 of the National Health Service and Community Care Act 1990.
Parent carers are of vital importance. As Contact a Family, a leading voluntary body in the field, stated:There are an estimated 360,000 disabled children in the UK, of which 98.5 per cent. are cared for at home by their parents. The Joseph Rowntree Foundation recently reported that most parent carers find "the stresses associated with the care of their disabled child to be wide-ranging, unrelenting and sometimes overwhelming'.The Social Services Inspectorate (1994) reported that "very often parents have been left alone to deal with a multitude of emotional, practical and social problems'. Indeed, 'many parents were unable to get access to the support they required in order to continue caring for their child, until they reached crisis point'.The purpose of the Bill is to ensure that support and recognition are given before parents reach that crisis point.
Parent carers and other carers of children are dealt with in subsection (2) of new clause 1. If the Bill is enacted, it will give most carers the right to an assessment when a person is being assessed for community care services under section 47 of the National Health Service and Community Care Act 1990, but disabled children are not assessed for services under that Act, so we should not assess the needs of their carers under that provision. New clause 1 would give parents or other carers of disabled children the right to an assessment when their child is being assessed under the Children Act 1989 or section 2 of the Chronically Sick and Disabled Persons Act 1970.
§ Mr. Alan Howarth (Stratford-on-Avon)
Would that right apply also in a case where parents were exploring the possibility of an educational statement for the child?
§ Mr. Wicks
The hon. Gentleman raises an important point about the relationship between the way in which local education authorities assess such needs and what we intend for social services departments. My judgment is that the answer to his question is yes, if the Bill becomes law, parent carers would have the right to have their needs assessed. But the hon. Gentleman raises a more important issue, by implying that, if the Bill goes through and guidance is issued by the Department of Health, we need to ensure that there is proper co-ordination and discussion with the Department for Education, so that local education authorities, social services departments and health authorities sing from the same hymn sheet when it comes to assessing needs in that area.
I mentioned young carers in my introductory remarks. None of us knows how many children play the role of carer. Estimates vary; early estimates suggested 10,000 to 20,000, while recent research suggests up to 40,000. We need better research in that area to establish the facts, not least so that local authorities can plan properly, but we 429 know that children carers exist and probably exist in larger numbers than we recently thought. The Minister and I had an opportunity only yesterday to meet some of those young carers.
May I illustrate the position facing young carers? The first case is that of a young 17-year-old woman who went to live with her grandmother following some problems at home. Her grandmother claims attendance allowance and has bad arthritis. The 17-year-old woman is still trying to finish her studies at the local college, but when she approached the social work department to ask whether her grandmother could have some rails in her bathroom, she was told that as she, the carer, was now present in the home, all her grandmother's home care would be withdrawn. The 17-year-old explained that, although she was helping in the evenings, she was out at college all day and could not provide support in the daytime. She was told that her grandmother was now low priority as she was no longer alone, and that going to college was her choice, which she could give up if it was too difficult. Her needs and right to study were entirely disregarded.
The second example is of Richard, a 12-year-old boy who looks after his mother who has rheumatoid arthritis. His father left the family two years ago, so Richard is the major carer. Before he goes to school, he helps his mother to dress, combs her hair and makes her bed. Some days, he goes home and gets his mother's lunch but he tells his school friends that he is going home to feed the dog in case they laugh at him. When he comes home in the evening, he does the vacuuming, tidies the kitchen and prepares the tea. He then helps his mother have a bath. He often does not manage to finish his homework, which means that he gets into trouble at school. Twice a week, the local authority provides domiciliary care, but some days the woman cannot come, which means extra work for Richard.
Those cases show that, while many children in that position are among the most responsible children in our society, they are effectively being robbed of their childhood and education. The implication of the point made by the hon. Member for Stratford-on-Avon (Mr. Howarth) applies here. In assessing the needs of young carers, we must ensure that assessment and recognition are matched in both local education authorities and social services departments, because education is a crucial aspect.
In carrying out assessments of people being cared for, local authorities should consider all the circumstances of those people, including whether children in their families provide care. The service provided should then try to ease the burden on children or young people providing care. Under part III of the Children Act 1989, local authorities have a duty to safeguard and promote the welfare of children in need.
I hope that local authorities are assessing the needs of children within the framework of the Children Act, but evidence and experience show that that is not always or even usually the case, and we need substantial improvement. It is vital that children and young people be seen as children first and carers second. We must try to address their needs by a different route compared with that for adult carers. It must be acknowledged that children are different from adults.
Assessment should therefore take account of the fact that childhood and adolescence are stages of development that form the basis for adult life. We must not assume that it is appropriate for children and young people to take on the same caring responsibilities as adults. However, it is 430 crucial that young people are not excluded from asking for an assessment under the Bill. We have had to grapple with the complexity of relating the needs of the child-carer both to community care objectives and, perhaps more important, to objectives of enhancing children's welfare.
Having shown the different groups of carers that the Bill will cover and, I hope, explained that I shall ask the Committee to reject clause 1 and introduce new clause 1, because we want to be inclusive rather than reject groups of carers, I now move on to assessment. At the heart of the Bill is a recognition that carers with a major burden should have their needs assessed by the local authority social services department. The basic philosophy behind the measure is that it is crucial to ensure that local authorities take proper account of carers' circumstances when carrying out an assessment of the need for community care services of the person being cared for.
Clearly, the carer and the person being cared for may have different needs, but it would be wrong to conclude that there should be different or separate assessment procedures for each. We are dealing with delicate and difficult issues concerning human relationships, which are often very close. As they are so close, they are sometimes extremely fraught. The circumstances of each party must be seen together. At the same time, however, the new clause acknowledges the fact that services provided for the person being cared for also greatly affect carers.
I stress two important points. First, the new clause makes it clear that we are concerned about carers who provide or intend to provide regular and substantial care. That means that both those who already care and those who may be about to assume a caring role, perhaps because of an accident or severe illness, will fall within the scope of the Bill. It is particularly important that we assure those about to assume a caring role, for example, when someone is being discharged from hospital, that they are covered by those provisions.
That is vital, because we all know cases, either within our families or communities, or among our constituents, where a person's life is transformed when, for example, an elderly mother or father slips on ice in winter and breaks a hip or suddenly has a stroke. One day the person is leading a perfectly normal life and, within days, he must face up to a burden. We should not be too romantic because being a carer can be a burden.
The Bill's purpose is to ensure that those suddenly facing that situation are covered by the provision and can say to the social services department, "My relative may have to leave the hospital within days. May I now have my needs and potential needs as a carer assessed?" That is another way in which the new clause will considerably improve and strengthen the Bill. We do not want carers' needs to be considered only as a last resort. Local authorities must be able to respond to the needs of carers and of people receiving community care services before any difficulties arise, if necessary.
The second argument is that, through the new clause, the carer will be assessed on his or her ability to provide and to continue to provide care. That emphasises what already exists in Department of Health policy guidance and in other statutes. Assessments should not assume a carer's willingness to continue to provide care, which is important, because we would make mistakes if we felt that the only thing that we wanted to do for carers was to lock them into a caring position.
431 Although most people are in that position out of love and family ties and are only too willing to take on those great burdens in our community, we must give carers choices. If some people say in all honesty, "I have a job and a career; I am looking after my young children; I simply cannot take on that role," we must respect that, and the assessment must respect that. The same applies if a person says, "I have been doing this for three years almost round the clock; I want to be the main carer in future, but I want to do slightly less"—not least because many of our carers are also workers.
That needs to be part of our policy agenda for the future. It is wrong that at the moment many carers—usually women, but sometimes men—must give up careers to become full-time carers. I hope that, as a result of the legislation before us and community care legislation in general, but also through a greater recognition of the issue by employers, trade unions and Government, we shall come to recognise the needs of the worker carer. Sometimes it is not wrong for a carer to say, "I want to do rather less in future." We must recognise that in legislation, and—more important—in terms of good practice.
The important change that has been made to the Bill, with regard to carers of disabled children, most of whom are their parents, is that the mechanism by which a carer can request an assessment has now been created by reference to legislation—the Children Act 1989, which provides services for children rather than legislation appropriate for adults.
Before I conclude, I should like to say something about the assessment procedure and services. The Bill as published, which we seek to amend today, separates the needs of the carer and those of the person being cared for. Of course, an assessment must take into account the circumstances of the whole family or the situation in which a person will be cared for. The services provided must reflect that holistic approach. We should avoid encouraging the possibility of two totally different assessments. The Bill will not seek to create two parallel rafts of services, one aimed only at the carer and one at the person being cared for.
The person being cared for will remain the central concern of community care policy under my Bill. Community care services will continue to be provided to those people, but the Bill will give the first recognition in statute of the fact that carers must be fully taken into account when decisions are taken on what services to provide.
One can go only so far in legislation in spelling out one's policy intentions, so much will depend on guidance issued by the Department of Health and, through that guidance, much will depend on the practice—one hopes, the good practice—of local authority social services departments.
In arguing the case for a legal right to an assessment of needs, I do not envisage a social worker visiting a home with a clipboard and ticking or crossing boxes in a bureaucratic manner. That would be almost worse than useless, and insulting to the carer. I envisage that the social worker will visit and have a discussion with the carer, in which the carer can explain the difficulties and the life she leads, often doing so not in the presence of the person being cared for.
432 I repeat that, although a caring relationship is based on affection and love, one cannot be too romantic about it. Just as, in the horrible jargon, the "user"—the person being cared for—should have a right to an assessment with the social worker at which the carer is not present, so there should be a right for the carer to be able to sit down with the social worker and explain the position.
§ Mr. Alan Duncan (Rutland and Melton)
We have heard a great deal from the hon. Gentleman about assessments and needs. I believe that hon. Members on both sides of the House would be happy to agree with all that. However, before he finishes speaking about new clause 1, will he clarify exactly what it is likely to mean in practical terms as regards the arrangement between the carer and the person cared for?
§ Mr. Wicks
I shall mention that in my concluding remarks, but obviously it is vital. It would not impress the carers of Britain—or, indeed, the hon. Gentleman—to have an assessment that did not lead to practical support.
Good practice is vital. I shall give a practical illustration of the way in which the assessment of carers' needs becomes important. When a social services department assesses the needs of the person being cared for—let us say, an elderly relative—the elderly relative, perhaps with senile dementia or with other major handicaps, may well not say to social services, "I want respite care. I think that it would be good for my daughter to give her a break," so that someone else can look after her for two weeks in a nursing home. However, when the carer has the discussion with the social worker, she or he may well say, "I am going crazy here. I am pulling my hair out. I am about to have a breakdown. I must have a break."
If the Bill works in practice as I intend it to, it would enable the social services department to say, "Although the elderly person did not mention respite care, the carer is crying out for it, and among the services that we provide, albeit to the cared-for person, respite care will be there regularly." That is an illustration of the way in which I hope that the legislation will work.
§ Dr. Norman A. Godman (Greenock and Port Glasgow)
May I draw to the attention of my hon. Friend the fact that the present practice in the Strathclyde region of Scotland is that the carer must agree to the assessment made by the appropriate social worker?
My hon. Friend's admirable Bill comes at an awkward moment for social work departments in Scotland because of the reorganisation of local government. Those new social work departments, under the new authorities, will need the type of guidelines that he spoke about a minute ago.
§ Mr. Wicks
Indeed. I am grateful to my hon. Friend, because he reminds us that although, in making out the case for new legislation and for policy development, we must talk about bad practice and about neglect, in many parts of our countries there is much good practice. We need to draw on that good practice if the guidance issued by the Department of Health is to be the guidance that is required. I recognise the good practice in my hon. Friend's region and in many parts of the country. I repeat that, throughout Great Britain, only a minority of carers—fewer than one in five—receive a separate assessment of their needs. However, we need to draw on that good practice.
433 I recognise that the reorganisation in Scotland poses difficulties, but, more positively, new departments and new councils may well be able to look afresh at their priorities and take that one into account. Although it might be awkward for councils, it would be even more awkward for carers if the implementation of the Bill were delayed, as my hon. Friend would be the first to recognise.
I shall say more about the services that might flow from the measure, because it would be frustrating indeed if we simply introduced an assessment that did not lead to positive change and more service support for carers, and indeed the person being cared for. One needs an assessment of needs, because people's needs vary enormously. I do not want social services to visit a home offering a pre-ordained package of care. I want those people to listen and learn from the person who best knows what care is required—the carer.
The services and support required vary—home help might be required or it might be help with bathing or putting an often large and heavy person to bed in the evening or getting him or her up in the morning. My talks with carers in different parts of the country suggest that often it is the need for respite care that people stress. We all need a break from time to time. We have just returned from an Easter recess. While I spent most of mine preparing my notes for this morning, other hon. Gentlemen no doubt had a break.
§ Mr. Wicks
Hon. Ladies did not, because a woman's work is never done, which is one of the Bill's themes. We are trying to correct that, and I am grateful to my hon. Friend for reminding me of that.
We all need a break. When we talk to carers, as many hon. Members have done recently, we are struck by the fact that some carers never get a break. Such people wish that, if only for one evening a week, they could be free of their caring tasks. They wish that someone could come in to look after their elderly relatives or their children with disabilities, so that they could go out with their husband, wife or partner, get away from it all and have a break. That is a modest demand, but some carers never have an evening off and never have a holiday. If only there were respite care so that the person could be cared for—perhaps still in his or her own home or a nursing home—and so that the carer and his or her partner could take that break. That would make a difference. I hope that such practical support will flow from the recognition of carers' needs. At present, that tends not to happen.
One carer in Croydon told me that she almost cracked up—to use her phrase—at one stage. She told me that no one ever mentioned respite care. She said that the social worker once said to her, "You have done a great job—keep up the good work." As the carer said to me, that sort of statement denies someone the right to ask.
I shall now outline the Bill's implications in Scotland. Colleagues will have recognized that the amendments also apply to Scotland. Given the legislative background and the fact that there are different laws in Scotland, the Bill will apply there in different ways. There are 700,000 carers in Scotland. I had the opportunity of meeting a few of them in Edinburgh only recently. Obviously, we are determined that the policy intentions should apply to Scotland.
434 The amendments enable the legislation to cover most carers in Scotland; certainly the provisions are the same for those adults caring for elderly relatives and for young carers. I am advised, although I am not an expert on Scottish legislation—colleagues might be—
§ Mr. Wicks
Yes, the Under-Secretary of State for Scotland, the hon. Member for Edinburgh, West (Lord James Douglas-Hamilton), is an expert. When I refer to colleagues, I include the Minister.
I am advised that we need to implement the policy intentions as they affect adult carers—normally parents looking after disabled children—in slightly different ways in Scotland. We have had positive discussions with the Scottish Office. I know that the Minister of State, Lord Fraser, would allow me to quote from his letter to me of 11 April in which he set out his policy intentions. On parent carers, he said that he agreed with the principles underlying the proposal of the Under-Secretary of State for Health,but if we are to secure corresponding provision in Scotland for assessment of the needs of adult carers for disabled children, this will have to be done in some other way. We will be prepared to instruct an appropriate amendment to the Children (Scotland) Bill in the course of its passage through Parliament. This would provide for the same intention as that reflected for England and Wales in subsection (2) of the new clause proposed for amendment to the Carers (Recognition and Services) Bill. I trust you will find this acceptable.Colleagues may have a view on whether it might have been possible to have exactly the same legislative arrangements for our countries so that Scotland was entirely in line, in its legislation, with England and Wales. I have no judgment or expertise on that.
My concern was not with legislative niceties, but with the carers themselves. Carers in Scotland are, in many ways, the same as carers in England, Wales and Northern Ireland. I am confident that, with new clause 2, which looks after most of the carers of Scotland, and with a clear statement from the Minister, the policy intentions behind the Bill will also apply to Scotland.
§ Dr. Godman
I am pleased to hear that Lord Fraser is offering support, because clause 20 of the Children (Scotland) Bill places a specific duty on local authorities to minimise the difficulties faced by children with disabilities. That Bill contains a provision to provide that sort of service to disabled children.
§ Mr. Wicks
I am grateful to my hon. Friend for making that point. As the Bill proceeds, no doubt there will be an opportunity for Scottish colleagues to ensure—although I do not think that they need to do so—that the policy intention is included in the Bill, but to have some discussions on the subject of children in Scotland.
I apologise to the Committee for taking a long time to describe the provisions under this group of amendments. We are dealing with the heart of the Bill and I have been given the opportunity to outline the overall policy intentions. While it is up to the Committee and its Chairman, and not me, I suspect that we shall make faster progress later.
§ Lady Olga Maitland (Sutton and Cheam)
I support the hon. Member for Croydon, North-West (Mr. Wicks) in his introduction of new clause 1. I agree with him that the Bill should deal with family care in the round. It struck 435 me as unusual and strange that the Bill should have been initially constructed without reference to children. It is logical and plain common sense to include within the Bill's provisions, certainly in the new clause, the cares and concerns of children.
I have met many parents of children who have been severely disabled. I have sat with them in their homes and met them at various centres. I am deeply aware of the frantic work they do. They are almost Cinderellas in the sense that people take their love for their children for granted. It is also taken for granted that parents will care for their children unstintingly and with 24-hour energy—almost beyond the strength of any man—and still come up smiling, but parents are carers and need a tremendous amount of support.
Children who are severely disabled, who display aggressive and challenging behaviour, who are wakeful and who do not sleep or conform to any normal pattern of behaviour, can drive their parental carers to distraction. Some children never sleep, which means that parents have to get up throughout the night. The father then has to go to work the next day when he is weary and exhausted. It is important that those parents, as carers, should be included within the terms of the Bill, and should have their needs assessed.
If the carers break down, the whole system breaks down. Parents are naturally determined to hang on because they love their children so much, but many do not realise that they could seek help. We must provide parents with the assistance that they need. As the hon. Member for Croydon, North-West said, the provision of respite care is essential not just to relieve tension but to enable parents to forge their own personal relationships. They must keep their families together and they can do that successfully only if they have some privacy. We must provide parents with that kind of support.
Parents often have other able-bodied children who can suffer dreadfully when parental attention is concentrated on a disabled child. Those able-bodied children have needs and concerns and the resulting rivalry among siblings must also be taken into account. We must examine that issue in the broader context of this Bill; we should not simply say that it comes within the orbit of different legislation, such as the Children Act 1989 and so on. That is rather like sifting through the laundry and saying that one can have the socks but not the vest.
I wish to draw to the Committee's attention to the case of a mother who has had a very trying time looking after her 16-year-old son, Stephen, who is profoundly mentally handicapped. That mother has the additional burden of caring for an elderly mother-in-law who suffers from senile dementia. One can only imagine what it must be like in that household. That mother receives voluntary assistance, but no statutory help. Her child can perform basic tasks for himself, but, although though he is 16, he has the mental capacity of a four-year-old. He therefore needs constant supervision in performing daily tasks, such as getting up in the morning, getting dressed, going to the bathroom and cleaning his teeth. Those routine activities that able-bodied people take for granted place enormous stress and strain on that mother, who is also caring for another invalid relative.
436 That mother is also concerned about another issue that was not raised by the hon. Member for Croydon, North-West but that I believe should also be taken into account. Parents are deeply anxious about what will happen to their disabled children when they reach the age of 19 and are therefore no longer eligible to receive immediate care. What will become of those children, and where will they go to engage in daytime activities? Even more worrying is the question of what will happen to those children when their parents die.
The mother to whom I have referred says that she spends a lot of time worrying because she can see that her son Stephen faces a bleak future. At the moment, that young man is conditioned to life within an established routine and pattern within the home. When his mother dies, he will be uprooted from his home, and his mother is extremely anxious about what will happen to him after that.
We must try to reassure parents in that situation that their children will not be thrown on to the streets. We must establish a proper care plan, which may be discussed with parents while their children are young—it should not be left until the children concerned are in their 20s—because that is when parents begin to worry and fear for their children's future. We must take those factors into account.
I also draw attention to the plight of parents of teenagers who develop schizophrenia. The illness is a curse—I can think of no stronger word to describe it. I am filled with admiration for Marjorie Wallace, who is the founder and director of Schizophrenia—A National Emergency, the charity which helps the victims of schizophrenia. She has done some heroic work in highlighting the problems of schizophrenia, which had previously been the skeleton in the family closet.
One has only to talk to a parent whose child has developed schizophrenia to know what the phrase "hell on earth" means. The illness places a terrifying strain on parents, partly because it takes a long time to diagnose properly. The parents of a child who stays up all night playing loud music and then sleeps during the day may eventually take that child to receive professional help only to be told that their child is experiencing adolescent behavioural problems. Therefore, it may be some time before the child receives the appropriate drug treatment.
Another problem is that children with schizophrenia may suddenly refuse to take their medication and erupt into dangerous violence. Parents need a tremendous amount of support from their general practitioners and social services. In a time of crisis, they must be able to have their children sectioned if that proves necessary. Violent teenagers are very powerful and they can cause a great deal of harm. I have talked to parents who are terrified of their children but, because they love them so much, wish to care for them at home.
A unique feature of the illness is that children afflicted with it can become suicidal. Therefore, parents are fearful for their children's safety and cannot turn their backs on them for even a moment. Children with schizophrenia may also do themselves tremendous harm. They are able to ignore the feeling of pain and so may deliberately place their hands on a hot stove top and injure themselves. The illness places a terrifying strain on parents and we must be aware that they need special attention, vigilance and support. Therefore, the new clause is an essential part of the Bill.
437 The issue of children who are carers is equally important. It is a twilight world and, as the hon. Member for Croydon, North-West said, it is difficult to know how many child carers there are. There may be 10,000 or 40,000—I have a feeling that the figure is probably closer to the latter. I believe that we must train teachers to ask questions and seek information about children's life styles if they become aware that children are not performing normally at school.
If children do not do their homework, if they look tired and anxious and are fidgety, with poor concentration spans, teachers should not accept simple explanations. They should visit the family concerned or they should alert social services. Teachers must be alert to the fact that those children could be carers. As the hon. Gentleman said, a child who is a carer may be too embarrassed to tell his friends that, instead of running home to feed the dog, he is going home to look after mum.
In my surgery I recently dealt with the case of a young woman—she is now 19 or 20—who has looked after both her parents for much of her life. Her parents, who are now in their 40s, suffer from crippling arthritis. Throughout her childhood, the daughter rushed home from school to ensure that her parents took the right tablets. She always worried about them a great deal. Now she has left home because she has married and become a mother herself, with two tiny children adding to her burdens—but she still rushes to her parents, worrying about them. I am full of admiration for the lifelong commitment of this young girl. I regret to say that Sutton social services, although up to speed in many other areas, has not yet understood that enabling that girl to live close to her parents so that she can look after them will prevent them from becoming a heavy burden on resources.
It is essential to bear in mind the needs of young carers. I heard only yesterday of the case of a father who recently suffered a stroke. To his mortification, the only person at home to whom he can turn is his 15-year-old daughter. This young girl has to deal with all the most personal aspects of his life, including going to the toilet. Frankly, only an adult capable of more objectivity should be put in such a position. It becomes a deeply stressful relationship: the father is humiliated and embarrassed by what the girl has to do for him, and she is not getting the support that she clearly deserves.
Far too many such cases come to light by accident. People are suffering silently at home instead of being given the attention that they require. I very much doubt whether this girl's case would ever have come to light under the provisions of the Children Act. I feel sure, however, that this Bill would scoop her up and provide her with the support that she so desperately needs. That is another reason why I hope that the clause will stand part of the Bill.
Social services departments are the key to the whole Bill, so I shall discuss their role. I have held long conversations with the social services department in Sutton on this subject. To its credit, it already assesses carers on a voluntary basis; but those people are brought to the attention of social services by the circumstances of those for whom they are caring. At present, social services makes its assessments quite speedily. If someone needs immediate help, he or she can be given it in a matter of hours—although usually it would take up to a couple of 438 weeks. That in itself is a vast improvement on what happens to children who are given education statements, a process that can take six months or more.
We all appreciate that those assessments must be carefully planned and carried out. I agree with the hon. Member for Croydon, North-West that a clipboard approach is wrong. Assessments should be done privately in carers' homes, preferably outside the hearing of the cared-for person. That is essential, because, owing to the nature of their problems, cared-for people can become very introspective and can take it for granted that the only person who can possibly look after them is their spouse, mother or daughter. They can become quite frantic if they hear conversations in which it is suggested that they might be given respite care or a temporary sitter. All that calls for a great deal of tact and flexibility.
Respite care should come high on any list. It is important to take into account the feelings of carers as well as the feelings of the people who are cared for. I know of a number of cases when the cared-for person has blackmailed his nearest and dearest, saying in effect, "You cannot possibly suggest that I be looked after by anyone else." For instance, I knew a wonderful elderly lady who used to look after her father, who was in his 90s. I am sorry to say that in the end she died before her father because she was so worn out. He would not accept any respite care or any alternative help. Firmness is called for in such cases.
Next there is the problem of the benchmark: at what point should help be given, and on what scale? On the answer to that question, many other things will depend. If an assessor examines only the condition of the cared-for person and prescribes services in that context, he is missing the point. Assessors should also scrutinise the condition and health of the carer, because if the carer is not fit and well the whole show will fall apart. The carer may be physically mobile and able to get out to the shops and perform basic tasks, but may also be rather fragile. Meanwhile, the cared-for person, although perhaps in a wheelchair, may be physically quite robust, while still needing help. We need to be careful not to be blinded by the physical condition of the disabled person, who may be fairly well, while forgetting that the carer may be getting ever frailer.
It would also be very cruel if a marvellous assessment plan for a carer were drawn up, but there were not enough resources to back it up. I therefore urge the Minister to tell us whether he will be putting more resources into this important sector, and whether they will be ring-fenced. I realise that that is rather a challenging request, but I am worried by the fact that some local authorities do not share my idea of correct priorities. I believe that any local authority's top priority should be its social services—I have no doubt about that. Sutton, a Liberal Democrat-controlled borough, has cut social services spending by 1.6 per cent., yet it has employed a play development officer and a dance development officer, and it is spending £40,000 keeping a public library open on Sunday afternoons. Those items of expenditure do not carry anything like as much importance as social services, in particular its task of caring for carers and people with disabilities alike. We therefore need to ensure that money cannot be devoted to other less important sectors—hence the need for ring fencing.
439 Resourcing needs to be carefully thought through. The guestimate for my constituency is that about 19,000 carers are to be found there, of whom 1,300 have been identified, helped and funded. As a result of the Bill, many more carers will come to light, so we shall need the resources to give them the back-up they need. It is therefore essential to think that through carefully and not to repeat what happened with the Child Support Agency, which was an excellent idea originally but which stumbled on many rocks along the way. I conclude that that was due to a lack of forethought. In this sector, which affects so many people's lives, it would be a cruel trick if we merely identified the need but did not come up with the resources to meet it.
I give a warm welcome to the ideas expressed by the hon. Member for Croydon, North-West, and I hope to have an opportunity later to make further contributions.
§ Ms Rachel Squire
I, too, am delighted to have the opportunity to speak in support of the Bill, and in support also of new clauses 1 and 2 and the amendments. I congratulate the Minister, the hon. Member for Battersea (Mr. Bowis), and the Government generally for supporting the Bill and for ensuring its passage through the House of Commons. It is a refreshing and welcome change for right hon. and hon. Members on both sides of the Chamber to speak with one voice, and to make that voice heard to the benefit of 6.8 million carers.
I, too, praise the work of the voluntary sector, and most notably the Carers National Association, for all the work that it has done for and with carers and for providing invaluable advice and assistance to all hon. Members on both sides of the Chamber and those in another place who have taken an interest in carers and community care.
I am not in a position to name all the individuals who have been involved with the Bill. My hon. Friend the Member for Croydon, North-West (Mr. Wicks) has mentioned some of them. It would take too long to try to name all those who have been responsible for putting the Bill on the statutory road. It would be remiss of me, however, not to praise my hon. Friend the Member for Croydon, North-West. I trust that it will come as not too much of a shock to him for me to pay tribute to the tremendous work that he has done. I am aware that sometimes over the past few weeks I have tended to behave more at times like a nippy sweetie, to use a good Scottish expression.
§ Ms Squire
I shall explain the meaning of the term later.
I was tending to behave in that way rather than as a supportive colleague. I was constantly demanding to know what was happening and what was going on. We would not be here today, however, if it had not been for my hon. Friend's commitment, expertise and hard work. That he chose to introduce the Bill among many hundreds of other legislative possibilities speaks clearly of his commitment to carers. No one could have spoken more eloquently of their need than my hon. Friend.
The Bill enables carers to make their voice heard. It recognises carers as individuals with their own identity and needs. It recognises also that carers' needs are not always identical to those of the people for whom they are 440 caring. It recognises too that the United Kingdom's 6.8 million carers are individual men and women, including young people, and not an amorphous identical mass.
There may be some who ask why we need the Bill, why carers need their own assessment and why their voice is not already heard. Like other hon. Members, I shall give a few examples of why the Bill is so necessary.
Carers are too often the last to ask for help for themselves. All too often they see the responsibility of caring for someone as a pressure, trauma and stress that they should be able to deal with whatever the circumstances. I agree with the comments by the hon. Member for Sutton and Cheam (Lady Olga Maitland) about some of the pressures facing parent carers, especially as they remain carers when their children become adults.
I still remember vividly, when I was a social worker in Birmingham, meeting an elderly couple. The woman was in tears and her husband was shaking with emotion. They had come to ask whether the social services department could arrange a week's holiday for their son. Their son was in his 30s and had learning difficulties. It emerged that they had never had a day's break from caring for him since he had been born.
The elderly couple were physically exhausted. Their tears and upset were more than anything due to feeling guilty about coming to ask for one week's holiday. They somehow felt that they were failing in their responsibility as parent carers to ask for one week's break. Although it is now 17 years later, and five years after the enactment of the National Health Service and Community Care Bill, we would be wrong to think that there were not still hundreds of thousands of carers in our communities in similar positions, not asking for help themselves because they feel that they should cope. They seem to take the view that to ask for help would be a failure on their part.
The Bill will tell all carers that they have rights, too. I hope that it will ensure that the majority of carers will have an assessment of need. The report published by Scope earlier this year on the experience of long-term care by parents with disabled children and families has already been mentioned. The survey revealed that only 13 per cent. of carers had received an assessment of need. The Carers National Association survey 1994 survey revealed that 80 per cent. of carers felt that community care reforms had made no difference to their lives. It has already been stated how frequently carers miss out because they are seen as a lower priority when there is a conflict between demands and insufficient resources.
We would all like to think that we already support carers, and that if we have not been carers ourselves, we have friends, relatives or neighbours who have been or who are.
Yet another example which sticks in my mind of how the present system is failing carers—it has already been touched upon by my hon. Friends—is that of Sadie Taylor, a woman from Lanarkshire who spent seven months caring for her terminally ill husband. I asked Sadie what sort of support she received from the health board and the social work department. She told me that generally it had been very good. She added, "Rachel, what I most needed at times was for someone to ring to ask me how I felt." That point has been made by my hon. Friend the Member for Croydon, North-West.
441 Sadie's experience reflects another concern, which is that in the development of community care there can too often be a false division drawn between health and social care. If we needed care, we would all choose to receive that care in our own homes rather than in a residential or nursing home, or a hospital. The Bill recognises, however, that our needs can have tragic results on the health of the carer. That is nowhere more clearly demonstrated than by the demands made on a carer by someone who has reached the severe stages of dementia or Alzheimer's disease.
In my constituency, I shall never forget hearing of a woman who had been caring for her husband, who had Alzheimer's disease. He had become so frail and restless that when they went to bed at night she tied her pinkie—her little finger—to his to ensure that she was woken up when he started to try to wander round the house. The neighbours went to investigate one day when they had not seen either the husband or the wife. They found the husband still alive but his wife was dead. The general practitioner diagnosed that her death was due to exhaustion.
There are many carers who are close to exhaustion. It is to be hoped that they are receiving much support. The Bill recognises, however, that it is never easy for a carer to look after his or her own health. Time and again carers say, "I can't afford to be ill."
I said at the start that the purpose of the Bill is to recognise carers as individuals; indeed, to recognise that any six carers will have six different sets of needs. Again, as has already been said, we must develop not a set fixed agenda of services, but a pick-and-mix range of care and support. The amendments that I have tabled to new clauses 1 and 2, on communication difficulties, are one small example of that.
None of us could ever anticipate every possible need or requirement, for in community care we are dealing with millions of unique individuals. My amendments, though, ask the Government and my hon. Friend the Member for Croydon, North-West to recognise the need to address the communication requirements of deaf and disabled carers, who, when they are being assessed for services to enhance their ability to provide care, may require particular communication assistance. For example, it may be vital that an interpreter fluent in sign language is available during the assessment of care, or for there to be technical communication aids.
Although section 8(2) of the Disabled Persons (Services, Consultation and Representation) Act 1986, requires a local authority to provide communication services when assessing the abilities of a deaf carer, I understand that that part of the Act has never been fully implemented. I do hope that my hon. Friend and the Minister will address those concerns in the implementation of the proposed legislation.
Another area on which I would like to touch is the overall value of the care that is provided by carers. Although we have talked about the 6.8 million carers in the United Kingdom, the Bill is of immediate priority to the 1.5 million full-time carers who care for someone for more than 20 hours a week. We recognise that no accurate value can be placed on the community care that they provide, but it is estimated at more than £30 billion a year.
Caring for someone can create financial hardship as well as emotional, physical and psychological stress. For instance, many carers have to give up work. A survey by 442 Caring Costs found that 53 per cent. of carers had given up work to care for a relative or someone at home. Such carers lose out on national insurance credits and pension entitlements. Caring at home costs a lot. It runs up fuel bills. It may involve special dietary requirements and medical supplies. Again, I came across one family in my constituency who for a period had to spend £49 a week just on bandages and other essential medical supplies. That is a lot of money for anybody's income.
Not only are carers unable to save money, but they often draw on their savings to subsidise the extra costs of disability. A Department of Social Security report four years ago found that two thirds of carers reported that caring had had an adverse effect on their standard of living. Yet only 0.5 per cent. of the social security budget goes on direct financial support to carers in their own right. I know that the Government have demonstrated their recognition of the financial penalties that carers may incur, most recently in the passage of the Jobseekers Bill, when they agreed to change the rules in favour of ex-carers by looking at their contribution record prior to caring when it came to an assessment for the benefit.
I ask the Government to give an assurance that they will give serious consideration to the confusing complexity of benefits to carers, and in particular to look at three areas. First, people who give up work to care may not be covered by mortgage insurance protection by voluntarily giving up employment, and could be hit drastically by the Government's plans to limit help with mortgage interest for people on income support. Secondly, I ask for assurances about the impact that incapacity benefit will have on carers, either on the person for whom they are caring or, indeed, the carers themselves, because the majority of carers are in the age range 45 to 65. Their own health may be becoming frail. I think that we are all aware of the increasing number of carers in their 60s or 70s who care for people in their 80s and 90s.
The third area about which I am particularly concerned, in terms of the financial pressures on carers, is the additional personal tax allowance. As hon. Members know, it is £1,720 per annum and is given to married men whose wives are permanently disabled and who also have a child or children to care for. The Treasury estimates that around 10,000 married men carers currently benefit from that allowance, yet it is not available to married women in a similar position. The Treasury admits that the allowance is both anachronistic and an anomaly. Even the Inland Revenue admits that it is unfair. Yet rather than extend that allowance to the 8,000 or 9,000 women who might be entitled to it if the rules were changed, it appears that the Treasury is threatening to abolish the entire provision for the men who currently receive it, as well as deny it to those women.
Although the Bill does not deal with financial support for carers, I ask the Government to tackle that discrimination in the additional personal allowance. The cost of doing so has been estimated at just over £2 million, a relatively small price to pay. It would help carers to remain in work and not have to draw on state benefit.
We have heard a lot—we will hear a lot—in today's debate about how carers are valued and should be praised for their tireless devotion, but sometimes praise is not enough. People are poor because they care. They are financially penalised because they care. Carers deserve a better deal. I hope that the Minister will use his influence to 443 that end and that we can look forward to the Chancellor, in his November Budget, extending the additional personal allowance to married women who are carers.
I make particular mention of my concerns in Scotland, as an hon. Member who represents a Scottish constituency. As has already been said, there are approximately 700,000 carers in Scotland—one in seven of the population. I am delighted that the Bill applies to Scotland, but I share my hon. Friend's concerns that it will leave carers of disabled children in Scotland in a worse position than carers in England and Wales. New clause 1 applies to England and Wales and allows a carer to ask for an assessment of his or her needs, whether caring for a disabled adult or for a disabled child. In Scotland, the amendments relate only to the community care assessment procedure for disabled adults, so the carer of a disabled child would not have the right to request an assessment of his or her needs.
It has been suggested that amendments to the Children (Scotland) Bill will be tabled to bring the position in Scotland in line with what is proposed for England and Wales, and I appreciate that. I hope that today the Minister will make a further commitment to table amendments to that Bill, incorporating the Chronically Sick and Disabled Persons Act 1972 in the new disabled child's assessment.
§ The Parliamentary Under-Secretary of State for Scotland (Lord James Douglas-Hamilton)
Amendments will be tabled, although I cannot guarantee that it will be done on Report; the proposal may be made in a Lords amendment, but the House of Commons will consider it. Our purpose is to achieve maximum consistency with the reforms south of the border.
§ Ms Squire
I thank my hon. Friend for that assurance, which will be welcomed by all hon. Members. The position of young carers is also relevant to the Children (Scotland) Bill, and we must ensure that the same provision is made for them in Scotland, as in England and Wales.
I must praise the current support for carers in many parts of the country, which is provided by voluntary associations, local authorities, health authorities and health boards. Like my hon. Friend the Member for Greenock and Port Glasgow (Dr. Godman), I am well aware of the efforts that many Scottish local authorities have made, particularly Strathclyde and Lothian regions and my local council, Fife region.
I share my hon. Friend's concern about the disruption to services and co-operation that local government reorganisation may cause. Only this week, however, I received a copy of a specific strategy for carers from Fife region. That strategy was drawn up after extensive consultation with carers, and with the voluntary sector and the health board. It states that carers' needs should be assessed, and that a care plan should be devised in conjunction with them. I hope that, by the end of today's debate, that commitment will look like becoming a reality for carers from Brixton to Belfast, from Cardiff to Croydon and from Thurso to Tredegar.
444 Let me finish by quoting the words of a carer from Fife who wrote to me about her experience. Her words clearly support the Bill. She wrote:During one crisis in my caring I turned to my church minister because I felt I had failed in my own expectations of myself and he asked me quietly, 'Who do you think you are—God'!The majority of us want to do the job well. It is for people we are committed to and love, but we cannot begin to do that until we come to terms with ourselves and others' expectations of us, their understanding and recognition of our limitations. If there is one thing that has become clear to me it is the fact that 'No man is an island'.We all need help, some of us more than others.So all you people out there—meet us half way, don't just write about us—help us.
§ Mr. Peter Thurnham (Bolton, North-East)
I congratulate the hon. Member for Croydon, North-West (Mr. Wicks) on his success in securing not only a Second Reading but a Committee stage for his Bill. I must admit that I was somewhat alarmed when I looked at the amendment paper and found that clauses 1, 2 and 3 were to be deleted; I wondered what would be left of the Bill. The hon. Gentleman, however, has been able to resubstantiate it by means of the new clauses. I also congratulate him on securing Government support: that is, of course, an important part of putting a private Member's Bill on the statute book.
The Bill itself is important. We are dealing with a huge army of carers, numbering some 7 million; I believe that 1.5 million are full time. The hon. Member for Dunfermline, West (Ms Squire) estimated the value of the unpaid services provided by those carers at some £30 billion—I hope that she will forgive me if I do not refer to her as my hon. Friend; Friday seems to be a very friendly day. Perhaps it is part of the spirit of the new Labour party for Labour Members to call Ministers their hon. Friends, but I do not think we need continue the practice throughout the debate.
Earlier, the value of care was estimated at £20 billion, but it may be impossible to put a value on the love that is part of the whole business of caring in the home. It is also difficult because so many different figures are used. The other day I met private care workers at Longsight Lodge, a sheltered home for old people in my constituency. They were paid £3.50 an hour. Voluntary services and private companies such as the Red Rose organisation in Lancashire charge £4.45 an hour for their care workers.
I was surprised to see an advertisement in the Bolton Evening News recently. Bolton council was advertising for care workers aged 18 or more, offering £4.21 an hour. That priced their services well above those provided by the voluntary sector. I wondered why a council that should consider itself to have an enabling role should take on the role of provider, at a cost substantially greater than that in the private sector. I feel that my hon. Friend the Minister should look into the question of costs and accounts. Indeed, I believe that my right hon. Friend the Chief Secretary to the Treasury has forwarded a letter from me to my hon. Friend about cost, asking whether local authorities are contracting out enough care work to the voluntary sector.
I believe that the position should be monitored, but I have found it difficult to obtain figures showing whether that is being done and whether—as is required by the 445 community care legislation—85 per cent. of care is being put out to the voluntary and independent sectors. My hon. Friend the Minister should ensure that we are given better value for money, given the substantial sums that the Government are spending on community care.
§ The Parliamentary Under-Secretary of State for Health (Mr. John Bowis)
I am delighted to learn that my right hon. Friend the Chief Secretary to the Treasury is seeking my advice. The 85 per cent. requirement is indeed being monitored: that is one of the purposes of the audit that takes place before the figures come to the Department. Once they have been properly audited, we shall have the full picture.
§ Mr. Thurnham
I had hoped to be able to elicit the information by means of a parliamentary question, but sofar that has proved rather difficult. I wrote to my right hon. Friend the Chief Secretary the other day; he wrote back, saying:
what you say about Bolton does look worrying. If local authorities are ignoring opportunities to reduce costs through sensible outsourcing, it certainly casts a fresh light on the allegation that they are unable to manage their responsibilities within existing financing constraints.There is certainly a great need for carers. The first of the four categories listed by the hon. Member for Croydon, North-West was that of adult carers looking after adults in need of care, but he also raised the important question of looking after disabled children, of which I have had personal experience. The figures suggest that there are some 350,000 disabled children living at home, while an estimated 5,000 more are so severely disabled that their families have been unable to cope with them, so they are receiving residential care.
We should do all that we can to provide loving family homes for those children. The extent to which care services are available to help foster families and adoptive families are important, and show the value of the Bill. Respite care, which has been mentioned, is one of the important factors in determining whether a family is able to foster or adopt children.
I was delighted by the opening of Grosvenor house in my constituency. It was formerly a children's home but is now a respite care home for people suffering from mental and other disabilities. The Duke of Westminster was kind enough to lend his name to the new building, which was established as a result of the efforts of Bolton handicap action group, which I helped to form in 1987. I was appalled at the number of people whom I met who were struggling to look after mentally handicapped "children" who are now adults and plainly in need of considerable care. Those people said that they could not manage without more help. We brought them together and formed the action group, which has certainly had an impact on the local authority in pressing for much better services.
I think immediately of constituents with difficulties who have met me on a number of occasions. They include people such as Mary Cummings and her husband, the parents of David Cummings who needs a great deal of care, and Nora Hargreaves and her son Paul. Paul is severely disabled and his mother wanted to go away for a few days because her doctor said that she could not manage to look after her son any more. She thought that if she had a break she might be able to continue to look after him. The local authority said that it would take Paul for a short spell of respite care but then said, "We are 446 sorry. He is too disabled and we cannot take him in." That 65-year-old lady was looking after her son yet the council said that he was too difficult to look after.
Another difficult case is that of Daniel Heaton, a youngster in my constituency who is reaching the end of his time at school as an autistic child. His parents are concerned about the extent of care that he will need when he leaves school and the amount of help that they will be able to have. Their love for that child is apparent. They do not want him to have to leave home but they know that they will need considerable help to look after him and find sufficient day services properly to occupy his time.
The work carried out by Contact a Family has already been mentioned. I endorse its good work and that of its director Harry Marsh. I have had contact with the organisation over many years both nationally and through the work that it does locally in Pendlebury children's hospital in Manchester.
I do not intend to speak for long because I want to leave time for us to reach my own Bill. Fridays can be difficult and I should not like my Bill to fall to the vagary of being talked out, nor do I want to be a spectacular own-goal scorer in that respect.
I was interested in the comment by my hon. Friend the Member for Stratford-on-Avon (Mr. Howarth) about children with special educational needs and his question about whether, during statementing, some account should be taken of their need for care. I am concerned about the statementing process in Bolton. The Audit Commission has highlighted the long delays. I understand that fewer than 9 per cent. of the statementing cases in Bolton have been completed within the statutory six-month period. That is an example of how the bureaucratic process can be impossibly slow and cumbersome in dealing with what are often the urgent needs of parents. My hon. Friend raised a wise point and perhaps the Minister will be able to consider it further.
I wish the hon. Member for Croydon, North-West all success in the passage of his Bill. I shall watch it proceed with great interest both for its own importance and as an example of how my Bill will follow his.
§ Ms Liz Lynne (Rochdale)
I am pleased to support the hon. Member for Croydon, North-West (Mr. Wicks), and I congratulate him on getting his Bill this far. I also congratulate the Minister on his work in supporting the Bill. I am pleased that young carers—those under the age of 18—will be included, because they have a difficult time. Many children are under a great deal of stress and often have to suppress their own needs because of the needs of the parents for whom they are caring. They could have many problems in later years because of the build-up of that stress and the fact that they did not have a proper childhood because they did not get the back-up they needed.
It is estimated that there are 40,000 young carers, and they have many different problems. The Carers National Association has spoken about several young carers and I shall mention the problems of one of them. Jenny is aged 14 and her father has Alzheimer's disease. She helps her mother care for him. He is often confined to a wheelchair and has difficulty eating, sleeping, speaking, bathing and dressing himself. Jenny also looks after her younger brother. Her mother works at night, leaving Jenny in sole charge of her brother and father. Jenny's school friends 447 are unsympathetic because they think she is making it up, as her father looks normal. She gets very tired, and her school work has started to suffer.
That is just one case, but I know of many more cases of, children similar to Jenny who suffer because their school friends do not understand. Quite often, the adults do not understand, either, and in some cases that applies to the teachers. We heard of a young child who was not able to do his homework. The teacher did not recognise that the reason for that was that he had to care for a relative.
Many young people fear being taken into care, and the parent for whom they are caring often feels that the child might be taken into care if that is reported to social services. I certainly hope that, when the Bill is passed, that fear will be addressed. I am sure that it will help parents and their young carers to come forward.
The Bill gives many new opportunities to local authorities but, as the hon. Member for Sutton and Cheam (Lady Olga Maitland) said, the money for community care has to be found and the Government must provide it to make sure that the Bill's provisions can be paid for.
Not only young carers but all carers will be helped by the Bill. For many years, carers have been largely ignored by everyone and had to get on with their daily lives while caring for relatives or friends. Their contribution is enormous but it is not properly recognised. They have helped the public purse because, without them, the cost to the Treasury would be immense. Those 6.8 million carers make a contribution to the country and that is why I plead for more money for community care.
Carers suffer many diverse problems and must be assessed individually. For example, those looking after elderly people suffer many problems. I shall quote another example given to me by the Carers National Association. A Mrs. Smith gave up her job to care for her 84-year-old aunt, who is in the early stages of dementia and is incontinent, and for her 86-year-old mother, who has arthritis and is underweight and very frail. The aunt lives in Enfield and the mother in South Woodford. She travels to and from her aunt and mother caring for them. The aunt was discharged following a lengthy spell in various hospitals. Mrs. Smith fully explained her caring responsibilities and the intolerable stress she was under, but no domiciliary services were arranged. She asked for respite care but it was flatly refused. Under the Bill, Mrs. Smith would have the right to an assessment of her ability to continue caring following assessments of both her relatives. Those are but two of many examples.
The Alzheimer's Disease Society has said that 66 per cent. of carers have been caring for more than three and a half years. Half of all carers spend approximately 80 hours a week on their caring responsibilities for a relative or friend suffering from dementia. A year-long study of 100 selected carers, by the Alzheimer's Disease Society, was issued in April 1994, and showed that 59 of those carers had not received an assessment. Only 13 had received a separate community care assessment, and 61 had not been offered a regular review of care. I was going to say that that is incredible, but it has been happening for some years. Let us hope that the Bill and the clauses that we are debating will address that matter once they have been passed into law.
448 Carers need respite care, day care facilities, sitting services and—above all—a holiday, as they have been caring for year after year with no help whatsoever. If their needs were better assessed—which they can be under the Bill by a local authority—services could be provided.
A few years ago, one of my constituents came to see me—this took place before I was elected as a Member. I was at the time working with the parents of children with learning disabilities in my constituency, and we set up a parents' group on statementing. A man whose son was suffering from learning disabilities—several friends of mine have children with such problems—came to see me. He and his wife had been caring for their child without complaint for many years. The man was thought of as very strong, and he had always said, "I can cope; I can manage." That is what most carers do.
My constituent saw me that day and asked whether I could do anything to help him, as he felt that he was on the verge of a nervous breakdown. He said that he could not handle it any more, and that he did not think his wife could, either—although she would not admit to that. Respite care for such people is so cost-effective. If they do not get that break, they will have a breakdown or something else will happen to them, and they will be unable to care for their child or relative. In the end, that child or relative will have to be taken into care.
No matter how welcome the Bill is, it is a modest measure, because it does not address the underfunding of care in the community. I am grateful to the Minister for going this far, but the Bill does not address several points with which carers have problems, such as the need to introduce a carer's benefit.
In considering the new clause, we must consider also the financial problems of carers. It is estimated that 26 per cent. of all carers, and 40 per cent. of older carers, are living in actual poverty. There are enormous financial costs for those carers, and unless money can be found for community care, I do not think that those carers will benefit from the Bill.
Carers must give up work to meet their commitment, and many middle-aged carers who then find that they need to return to work cannot get a job. We must address all those issues, and I hope that the Minister will look at them. We must address the problems with incapacity benefit, and I am sure that the Minister will put pressure on his Government colleagues on that matter, as there are knock-on effects from cuts in incapacity benefit.
I am grateful, as the hon. Member for Dunfermline, West (Ms Squire) was, that the Government have accepted some measures in the Jobseekers Bill, although I wish that they had gone further and allowed a national insurance holiday for employers who take on a carer who has been caring for a number of years. I hope that the Government will do that in future. I very much welcome the Bill, and I also welcome the fact that it has all-party support, but the Minister must take the other needs of carers on board. Finally, I must say again that I am grateful to the hon. Member for Croydon, North-West for introducing this excellent Bill.
§ Mr. Piers Merchant (Beckenham)
I give my strong support to the cause. People might wonder why we are having this debate, as it appears that we all agree on the basic principles of the Bill, but there is a good reason why 449 the matter should be aired—even if it is only briefly. So many people are affected by the implications of caring, and of the legal framework in which it operates at present and will operate in the future, that it is only right that the concerns are aired and that the efforts made to address the problems are discussed.
I congratulate the hon. Member for Croydon, North-West (Mr. Wicks)—he is a neighbour of mine—on the zeal with which he has approached the subject, and on the efforts and energy which he has put in to bring the Bill before the House and to get it to this stage. I listened with interest to the brief Second Reading debate. I would have liked to speak in that debate, but I am at least getting an opportunity to make a brief speech now.
Like my hon. Friend the Member for Bolton, North-East (Mr. Thurnham), I was somewhat alarmed when I first looked at the amendment paper and saw that the amendments in the name of the Bill's promoter, the hon. Member for Croydon, North-West, appeared to hack the Bill into nothing by removing clause after clause. I moved on, however, to look at the new clauses and saw that the Bill was being recast in a way that made it technically more effective in terms of its practical operation. I congratulate the hon. Gentleman on his flexibility and wisdom in taking advice on that technical area to ensure that what is enshrined in the legislation works. That is what matters.
The new clauses will make the Bill effective and will bring support to the 6.8 million unsung heroes—an amazing figure, which includes 10,000 to 40,000 children—who act as carers. They give tremendous care and support with love and devotion. The value of that support is inestimable, and it is impossible to put a figure on it because there is no alternative way of providing the quality and nature of that care.
It is possible to cost the savings on a more practical level, but it is very difficult to reach an accurate figure. The amount saved has been estimated at £30 billion, and those resources would have to be found to provide even a minimal alternative system to give just the practical elements of care.
It is wrong to talk too much in terms of costs and alternatives, because, in reality, there is no alternative. Care must be provided by those who have a direct connection with or emotional attachment to the person who needs care. That is why carers play such a valuable and inestimable role, and why they deserve every support to enable them to carry out that function effectively.
We have all learnt about this problem from our experiences with our families. I dare say that there is hardly a family in this country that has not—for one reason or another—experienced the need to provide care and support for a relative. My experience is probably typical. I first came across the problem as a child when a great-uncle was taken ill and went blind. He had led an active life, but he suddenly changed from being the person who more or less ran the household into someone in need of permanent care and attention, and he took to his bed. Not only was the household robbed of his support, effort and work, but he needed round-the-clock care.
The care was provided by his wife, my great-aunt. They were a fairly elderly couple. My aunt had to provide care for some eight or nine years. It completely wore her out, and at the end of that period she died, principally as a result, I have no doubt, of the strain that she had been put under in the last years of her life. It is perhaps ironic that, 450 as often happens in such circumstances, her husband lived on for many years. He was taken abroad by his daughter, who lived many thousands of miles away. She was able then to perform the role of carer. She was a qualified nurse and, of course, she was much younger than the mother, so it was perhaps a little easier for her. She was able to see him through many further years of life.
The example illustrates the pressure that carers are put under. They are people who are not trained, and perhaps did not anticipate playing such a role. They are suddenly landed with that responsibility, often during the latter years of their life, and the strain can be tremendous. Often, they are the sort of people who do not ask for help yet need help on a regular basis.
My grandmother required support in her declining years. Now my father, who is an elderly man not in the best of health—although I am glad to say that he is recovering—needs the support of my mother. In all those cases in my family, I have seen the need for family members to become carers. In all cases, there was no support from outside, but support would have been helpful—not so much for the people who needed the care as for the carers, when under stress or difficulty or when facing new challenges. They needed to be given advice and respite care or simply to be supported so that they could carry out the function that they wanted to fulfil more effectively.
Perhaps I should add—this is no great revelation—that in all the cases that I have described from my personal experience in my family, the people cared for most strongly want the support of their closest relative. They do not want support from outside. They do not want a stranger providing for them. That is not lack of gratitude. It is a perfectly normal human reaction, particularly if people are sick and require support. They do not want to start building up a relationship with someone from outside. They do not want the "authorities" to become involved unless it is absolutely necessary. They far prefer to receive support in the comfort of their own home from people they know. That is the real value of carers.
I have spoken from a rather narrow perspective, but there is also a huge national and social problem. It has been brought into sharp highlight recently by the Carers National Association, particularly Jill Pitkeathley. At the beginning of this Parliament, I attended a meeting held near this place addressed by my right hon. Friend the Secretary of State for Health, who has had experience of the problem in her previous existence in social work. It was the first time that I had ever heard carers' problems discussed at length at a political level rather than at a personal level or in individual cases.
Since then, I have been contacted by a number of campaigners in my constituency. As a result, I recently attended a meeting of the all-party disablement group, at which representatives of the Carers National Association went into further details. I subsequently attended a lobbying meeting. All that has helped me to grasp the extent of the problem—not only the depth of individuals' difficulties but the breadth of the problem throughout the country. I call it a problem not because there is anything wrong with the system of caring that carers provide but because there are clear gaps in the support that the people who provide the valuable service require.
451 11.45 am
I was particularly struck by the difficulties faced by young carers. I have not previously come across young carers in any personal capacity. I learned of the difficulties that they experience. Some harrowing experiences have been described today. Young children suddenly have to grow up because they have an additional burden of responsibility. That makes one realise how important it is to deal with the problems that have become associated with caring.
Of course, not all examples are the worst. Nevertheless, it is important to tailor legislation and support from outside to provide means of help for those worst cases. Only in that way can we hope to pass legislation that is in any sense adequate. The most important thing that is required is simple recognition. In so far as the Bill provides that, it performs a vital service. It says in sharp headlines within this place and, I hope, in law that carers exist across the country in large numbers and need the recognition of the law and the system to carry out their functions properly.
The Bill introduces—the clauses in this group specifically do so—a requirement for carers to be assessed. That is important. We have heard today, and I have given examples, of carers ending up as the people most in need of care. To prevent that, a proper assessment needs to be made at an early stage so that it can be judged whether they can cope and to what extent they need support in doing so.
The new clauses enable local authorities to give support. The Bill does not go as far as I would like—I am sure that the hon. Member for Croydon, North-West agrees with me—but it is important to see it as a first stage. So long as authority and power are given to local authorities to provide support, that can be followed up later with greater pressure, both legally and in other ways, to ensure that support is forthcoming.
I make no apologies for mentioning again a most important element of the new clauses that we are discussing and of the Bill—the provision of respite care. If I were asked what single most important contribution could be made, I would say that it was the provision of respite care to enable carers to continue without becoming completely drained of all energy, and to have the opportunity to recharge their batteries.
We often talk of care as something provided for and by the elderly. That is indeed the case in the majority of examples; but we should not allow the debate to pass without remembering that young people both give and need support. I make special mention of the increasing number of people who, sadly, suffer as a result of the ravages of HIV. Often, the people who suffer from the advanced complications that HIV creates are those most in need of support because of the nature of the illness. They find it most difficult to adjust to receiving support because generally they are young people who have been active until recently and because, sadly, there is still stigma attached to the illness, so provision is not easily forthcoming. I hope that HIV sufferers will be specifically considered when the Bill is implemented.
The Bill plays an important part in building on the care in the community system—a system which I strongly support and which has already shown itself to be effective and helpful. I am surprised that such a major reform has been introduced without more difficulties than have been 452 presented. I do not disguise the fact that there have been difficulties and that difficulties remain, but in general the system has come on stream surprisingly successfully. If it is to work properly, it is important to include carers' needs as a central part of the provision of care in the community. The new clauses will achieve that. They will do more than is done now and will establish a deep official link between caring and care in the community, which I am glad to see.
I am also glad that the Government, through the Under-Secretary of State for Health, my hon. Friend the Member for Battersea (Mr. Bowis), have constantly shown support for the thrust of the Bill and its practical implications. By creating a carer's right to be assessed and making it an essential first point, when it is requested, we will greatly strengthen the position of carers and greatly improve the quality of care in the community.
I must draw hon. Members' attention to two aspects of the problems facing carers. The Carers National Association carried out a survey that showed that 47 per cent. of members had experienced financial difficulty since becoming a carer, 65 per cent. said their own health had suffered, 20 per cent. had never had a break and 33 per cent. got no help or support. That is a powerful sign of the amount of support that is needed and it builds on the personal examples that we have heard.
The British Medical Association's report "Taking Care of the Carers" estimated the value of carers at between £33 billion and £39 billion. Both those factual investigations add further clarity to the need to support carers. The Bill will provide for that support, which is why I strongly support the new clauses and the Bill. Of course, it will not make everything perfect and more will need to be done, but the essential thing is that it will provide greater recognition for carers, which will bring them greater support. For that reason, the Bill is a most important stepping stone.
§ Dr. Godman
I shall be brief, and I must first compliment my hon. Friend the Member for Croydon, North-West (Mr. Wicks).
In my brief intervention, I want to fire a couple of questions across the bows of the Under-Secretary of State for Scotland, the hon. Member for Edinburgh, West (Lord James Douglas-Hamilton). I will not call him my hon. Friend, but he is a fair-minded adversary. He and I have campaigned—if he will forgive the immodesty—to reform child care law in Scotland, and some of my questions will be directed to that issue.
As we know, there are about 700,000 carers in Scotland, with about 16,000 in my area of Inverclyde. I promised members of the Inverclyde Elderly Forum and the local branch of the Alzheimer's Society of Scotland that I would be here today.
I must against stress that, in Strathclyde, present guidelines and practices focus on a needs-led assessment of the person requiring care. The carer has to be involved in the assessment at all stages. Indeed, before it is concluded, the carer is asked if he or she agrees with it.
Shortly before she resigned from the social work department, my wife carried out such an assessment in a hospital. Many are carried out in hospitals, although ideally they should be carried out in a person's home. My wife and the daughter of the person needing care agreed that the very elderly and frail lady concerned should be returned to the daughter's home. As a social worker, my 453 wife was able to ensure that the carer received certain assistance. As the Minister knows, my wife became a regional councillor, which forced her resignation.
Needs-led assessment is a long-established practice in Strathclyde and takes into account the needs of the carer, but the Bill will strengthen such assessments, which is why I welcome it. The Bill will also iron out some of the inconsistencies in Scotland.
My questions to the Under-Secretary of State for Scotland have largely been answered by his honourable assurance that clause 20 of the Children (Scotland) Bill will be amended, but new clause 2 mentions "disabled children". Is it likely that clause 20 will have to be amended in this or the other place to take that into account? Clause 20(1)(a) of that Bill says that the services provided by a local authority shall be designedto minimise the effect, on such disabled children as are within the authority's area, of those children's disabilities".Clause 20(1)(b) continues:to give those children the opportunity to lead lives which are as normal as possible.I should have thought that one of the objects of my hon. Friend's laudable Bill is to ensure that the carers of such children are given assistance by local authorities, so there is much compatibility between it and clauses 19 and 20 of the Children (Scotland) Bill.
If the Under-Secretary of State for Scotland cannot answer now, perhaps he will be good enough to write to me and place a copy of his letter in the Library. How has the Scottish Office publicised the rights of carers to a needs-led assessment of their needs? That is an important and serious question. Many elderly people are unaware of their rights, for example, to certain social security payments. There is a genuine ignorance of their rights. It is essential that elderly carers in particular are alerted to the rights that they will be given under the Bill—I am convinced that my hon. Friend's Bill will become an Act of Parliament.
Will the Under-Secretary of State for Scotland also say whether section 12A(4) of the Social Work (Scotland) Act 1968 needs to be amended where the provision of services required by a disabled person is concerned?
Following the comments by the hon. Member for Bolton, North-East (Mr. Thurnham), I believe that the working party that is examining the ownership and management of private residential homes for the elderly is to publish its report in the autumn. Can the Minister confirm that, because eventually many people who care for elderly relatives cannot do so adequately and, often on the recommendation of a social worker, they are encouraged to allow the person to take up residence in a private residential home for the elderly?
As the Minister knows, there is serious disquiet about the ownership and management of some such homes. At the fatal accident inquiry into the Glencova home in Glasgow, the sheriff described the elderly people in the home as being treated like livestock, for money. So there is real concern when carers cannot look after elderly people, who then must go into a home. Many homes are excellently run and well managed by professionally qualified individuals, but there remain many questions concerning some homes.
This wholly admirable measure will be introduced in Scotland at a time when the social work departments are to disappear, along with regional councils. That does not 454 mean that the essential and important services provided by the social work departments are to disappear also; the new councils will take on that important role and significant functions. At the last moment, Lord Fraser introduced an amendment to the Local Government (Scotland) Bill, which stipulates that the new councils must appoint a senior social work officer with prescribed social work qualifications. So I hope that social workers will be re-employed in the new councils and take their skills, experience and knowledge to their new employment.
The Minister knows of my concern that many of those who will shape the policies, procedures and practices of social work departments have no experience as administrators in the regional councils. In the recent election in Scotland, the overwhelming majority of successful candidates elected to the new authorities are district councillors.
In Inverclyde, four of the 20 new councillors are regional councillors and of the 82 in the new Glasgow authority, fewer than 20 of the successful candidates are regional councillors. So the majority of councillors have no experience of the implementation of social work policies, procedures and practices. That holds true for education and other functions as well. If the Minister is to issue guidelines, they must be issued to councillors as well as to chief social work officers and their staff.
The measure is wholly admirable, and will bring relief to many of my constituents. I meet many carers as I go about my work, as does any hon. Member, and I know the remarkable, selfless, devoted attention they give their loved ones who are infirm or suffer from disabilities. It behoves us to protect the carers, as well as seeking to protect those who need care. I welcome this measure and hope that, at some point, the Minister will answer the few concerns that I have voiced today.
§ Mr. Duncan
Thank you, Mr. Morris, for allowing me a few moments to make some observations on the new clause, which I am happy to support and which goes to the nub of the Bill introduced by the hon. Member for Croydon, North-West (Mr. Wicks).
As the hon. Member for Greenock and Port Glasgow (Dr. Godman) said, carers' self-sacrifice is inestimable. Amidst the many criticisms which some hon. Members on this side of the House receive from constituents in the current climate, the "thank you" that sticks most in my mind was when a couple came up to me and said, "Thank you, you have changed our lives." I was taken aback but then recalled that, a year earlier, the couple had come to see me at my constituency surgery. They were very unhappy and about to divorce. The man could not get a job and they looked bedraggled because they had been caring for their Down's syndrome child and desperately needed respite care. A year later, having received that care and been able to put the child into a home for long periods, their whole lives had been transformed. That is the sort of case that the Bill will deal with.
At present, we appear to have too sharp a segregation between private care in the family home and the care provided by the social services. The Bill will better link the two, so that the resources of social services are used more productively to assist those trying to keep a family together and provide care within the household setting.
455 May I inject a note of caution? As I suggested in my intervention to the speech by the hon. Member for Croydon, North-West (Mr. Wicks) early this morning, the Bill is essentially a statement of intent rather than a legal document of practice. It is more difficult to legislate for intent and what one wishes to happen than to lay down a set of rules that must be met. At times, it will be difficult to assess whether the law has been adhered to or been broken because, by and large, it is a gesture, albeit a worthy gesture, rather than a detailed set of requirements.
So my note of caution is simply that we must be careful about exactly how the Bill will translate in practice, if it is enacted, as I hope it will be. I would not like it to become a first step towards the universal provision of, for example, a minimum allowance for all carers in all circumstances. Rather, it should become exactly what hon. Members on both sides of the House have said: a means to ensure that discretionary decisions can sensibly be taken to alleviate some of the real burdens carried by those who care almost full time, day and night, for a loved one in their own households.
I support the Bill, with the proviso that it should not be the first step to a massive extension of universal care in all circumstances. It should be an important empowering measure to enable social services to alleviate the burden on those who, in a private setting, currently take on all the responsibility and face too heavy a burden in doing so. In that spirit, I hope that the hon. Member for Croydon, North-West accepts the support that I give the Bill. I hope that, once enacted, it will not be abused by calls that are too loud for too massive a subsequent provision.
§ Mr. Alan Howarth
I am extremely pleased to be a sponsor of the Bill introduced by the hon. Member for Croydon, North-West (Mr. Wicks). I congratulate him not only on introducing the Bill but on how he has negotiated the developing substance of the Bill and on how he spoke today. He paid tribute to the Carers National Association and other organisations, and I readily join him in those tributes. However, he was a little too modest, because his work, from the time before he was in the House and throughout the period during which he has been a Member, means that he has a depth of knowledge and commitment in this area. The Bill is an admirable expression of that.
I also congratulate and thank the Under-Secretary of State for Health, my hon. Friend the Member for Battersea (Mr. Bowis). His speech on Second Reading was both characteristic of him and heartening. He spoke on behalf of the Government and, evidently, on his own behalf, with humanity and warmth.
The Bill articulates and fills out the legislative provisions of the National Health Service and Community Care Act 1990 and the Children Act 1989. Although the guidance issued by the Government in amplification of those measures has made it clear that Ministers expect assessments to be made of the needs of carers, none the less the requirement is not adequately specified in the legislation currently on the statute book. This measure is a timely and necessary amplification of existing legislation.
I am pleased that the hon. Member for Croydon, North-West chose to incorporate the word "recognition" in the title of the Bill. The colossal contribution that carers make to the well-being of our society and the lives of 456 those for whom they care deserves to be recognised. Carers give what they give willingly and lovingly and undertake immensely demanding responsibilities, which are all too often also immensely exhausting.
I have been reminded of that truth with special vividness in several meetings and conversations that I have had in my constituency recently, in which I have again been made aware of the sheer goodness of carers. I have also noted again what are all too often the inadequacies of the support that we give them.
I have not sought the permission of the people concerned to name them, so I will not. I shall only say that Mrs. K, my constituent, who is 81, cares for her husband, who has diabetes, who has lost both legs and who has Parkinson's disease. Fortunately, they receive significant respite, because he spends one week in three at a community hospital, but the burden that his wife carries in the other two weeks is enormous. Mrs. K contacted me because she was, understandably, deeply worried about the increase in the charges that they were expected to pay for the support that they receive from the social services department. They have been receiving 13 hours of help a week. Previously, they were being charged £7 a week. Suddenly, early this year, they were given to understand that they would be charged £7 an hour and that the cost to them would increase to £91 a week.
Let me also mention Mr. and Mrs. D, who have two adopted sons, one of whom is autistic and the other of whom has Down's syndrome. They are struggling to keep their heads above water. The building society is struggling not to repossess their home, but they are in deep financial difficulty and just at this moment they have been told that they are to lose the six hours a week of respite help that they have been receiving. That is wrong in itself and it is enormously short-sighted. We should not only honour- our carers, but give them a sensible and decent amount of support.
I shall name another person, by whom I was deeply impressed, as were other hon. Members. That person is Patricia Mighty, who came to give evidence to the informal Select Committee on the family, chaired by the hon. Member for Hammersmith (Mr. Soley), last year. The hon. Member for Croydon, North-West and my hon. Friend the Member for Bolton, North-East (Mr. Thurnham) also served on that committee. I am sure that they would endorse what I say.
When Patricia Mighty came, accompanied by Francine Bates of the Carers National Association, she moved us all to admiration for the work that she was doing in looking after a father with multiple disabilities, a mother developing cancer and a 12-year-old son, while holding down a job as a part-time helper in an old people's home. It is an heroic performance. However, although we were moved to immense admiration for her, we were also moved to an intensified disquiet and shame about the inadequacy of public support for a person in the position in which Patricia Mighty finds herself.
I am glad that we have heard no suggestions in today's proceedings of the type that one sometimes hears, to the effect that there is too great a tendency for people in this day and age to dump their responsibilities on the state. That is precisely what the 6.8 million carers in this country are not doing. They willingly shoulder responsibilities that they believe to be natural and appropriate, but they also need help.
457 The measure confers a new right on carers: a right to request an assessment. Sometimes we hear that there is an excessive emphasis on rights as opposed to responsibilities. Those carers take responsibility and we, their fellow members of society, have a responsibility towards them, and in many respects we express that responsibility by public provision.
The Bill provides, therefore, that carers may be assessed for their needs, to be part of the formal assessment of the services that it may be appropriate to provide. However, it is worth emphasising, as I understand new clause 1, that the disabled person remains very much at the heart of provision and that the assessment that may be made of the carer's needs is an assessment made in the context of the assessment of the needs of the disabled person. It may be worth emphasising that, to offer reassurance to disabled people who fear that, in the emphasis that we wish to give to recognition and support for carers, they themselves may somehow be marginalised or their interests made subordinate.
I do not believe that many people have that fear. Nevertheless, we all know that, although the caring relationship is time and again a caring relationship of love, it can also be fraught with mutual stress and strain, and it may be worth offering that consideration by way of balance and reassurance.
I am especially pleased that, in the development of the content of the Bill, due focus has been put on the needs of young carers. The reality of their predicament is too little recognised; their needs are too little understood. They experience a type of premature adulthood, and it is a bitter irony that they and their families should, not infrequently, live in fear of the young carer being taken into care. As a result of the Bill, their needs will be better focused and, I hope, will be met in future with better understanding.
It is good that subsection (2) of new clause 1 is targeted at the needs of carers of disabled children. The psychological shock for parents and other members of the family on identification of the disability of a child can be very great. Sadly, the experience thereafter is almost always that of an immense struggle, everything being uphill work, with families—especially parents—struggling to secure the provision that is appropriate and having to deal with agencies that are all too often defensive and fragmented.
I hope that the measure will help us to achieve greater coherence and co-ordination of provision in support of parents who are carers of disabled children. Whether it is in educational statements, which we mentioned earlier, or in providing transport or aids and equipment, we need to take a more coherent total approach to what is needed to support such families.
I do not suppose that those people's lives will be instantly transformed as a consequence of the Bill reaching the statute book, but if it now becomes part of our official policy to recognise and support their needs, and to provide a formal assessment of their needs, that is an important civilising advance of principle.
It is right that we take those steps. We are, after all, a society that is affluent, and if we are to be a decent society, that is what we should do.
458 To take a carer's needs into account will enable a more cost-effective use of resources to be achieved because expenditure on carers, assuming that it is on sensibly designed and well-monitored policies, is investment. On any rational cost-benefit analysis, we should provide adequate levels of support for our carers.
I congratulate my right hon. and hon. Friends who are Ministers at the Department of Health, as I suspect that they will have undertaken a dialogue with the Treasury, which may not always have been straightforward or easy. I do not find occasion to praise the Treasury as often as I would wish, so let me congratulate Treasury Ministers on their recognition, at least in this sector, that it is necessary to spend money in order to save money, and that support for carers is an investment.
The best research of which we are aware suggests that the work of unpaid carers saves the Exchequer about £34 billion a year. It would be improvident not to provide by way of public expenditure enough funding to keep the carers on the road. It has been well calculated that, if 10 per cent. of the 6.8 million carers were to buckle under the strain and drop out, the result would be an additional £2 billion charge on public expenditure. Carers are willing donkeys, but we should not drive them until they drop. The cost of failing to support them adequately will be huge.
Let us consider the typical costs of local authority residential care. The cost of care for a younger physically disabled person is £498 a week, for a mentally handicapped person, £296 a week, for an elderly person, £178 a week and for a mentally ill person, £167 a week. It will certainly be cheaper to fund adequately support for carers. It has been convincingly computed that the average value of unpaid care for a week for people with severe disabilities is £205. It would be short-sighted fiscally not to provide sufficient support to enable carers to continue performing their role.
It is also short-sighted if the terms and extent of our support are insufficient to enable carers, where they can reasonably do so, to be in work. The hon. Member for Dunfermline, West (Ms Squire), in the course of her sensitive and thoughtful speech, observed that 53 per cent. of carers had given up work in order to care. I have noted that only 20 per cent. of all carers work part-time. As a result, we are losing the benefit not only of the tax payments and national insurance contributions that those people would contribute to the Exchequer, but of the broader contribution that they might make through their employment to the overall performance of the economy.
Of course, I recognise that we could quickly find ourselves spending a lot on additional support for carers. I recognise the problem that any responsible Government face in finding sufficient resources in the short term, but we are not talking about lavishing resources on anyone. We are not talking about lavishing resources on all the 6.8 million carers, who include large numbers of carers who might more appropriately be termed informal helpers. We are talking of between 1.5 million and 2 million carers who are at the heavy end of caring—those who care more than 20 hours a week and provide physical as well as personal care.
What such people typically ask for by way of additional support is characteristically modest—often not more than four hours' relief a week, so that they can get away and have a break. I should like them to receive more help than that; I should like them to receive more additional help in 459 terms of respite care, sitting help, day care and holidays. But it is critical that we support those 1.5 million to 2 million people—who make only modest requests—to enable them to maintain their care, not just because it is the decent thing to do, but because hard-headed calculation shows that that is what we need to do.
We need to take care to ensure that the various Government policies work consistently towards the end of supporting carers.
Among the implications of the Bill and new clause 1, which now forms the Bill's heart, is the implication that we should review invalid care allowance. The conditions of eligibility for invalid care allowance remain very restrictive. I find that people are often surprised when I remind them that someone qualifies for that benefit only if he or she cares for a person for more than 35 hours. If he or she happens to care for two people for 20 hours each, he or she does not qualify. Someone qualifies for the allowance only if the person being cared for is in receipt of attendance allowance or disability living allowance and only if the carer is earning less than £50 a week and is under retirement age. Other benefits such as income support are deducted, pound for pound, in relation to invalid care allowance.
It is a benefit that few people obtain. Only 20 per cent. of full-time carers receive invalid care allowance and that allowance is modest. It is less than £35 a week, which represents only 11 per cent. of national average earnings and is only little more than three quarters of the adult rate of income support. It is not enough, and the Social Security Advisory Committee has urged the Government to make the benefit more generous.
I understand how difficult it is for my right hon. Friend the Secretary of State for Social Security to respond as positively as he would wish to everyone pleading for an increase in a specific benefit, but invalid care allowance represents only half of 1 per cent. of the social security budget, so it would not put us on the road to fiscal ruin if my right hon. Friend could find the margin to do a little more. That is an illustration of where we need to ensure coherence in our policy. If invalid care allowance is insufficient to provide an adequate level of help and to support sufficient numbers of people, fewer carers will be able to carry on providing the cost-effective support that they do provide.
Other hon. Members who have spoken in the debate have mentioned the importance of at least monitoring carefully the impact of incapacity benefit. The tougher eligibility rules for incapacity benefit as compared to invalidity benefit may mean that not only those who are cared for, but some carers, may lose benefit. That could have perverse results for the public purse.
I echo the plea made for careful consideration of the policy that the Government may introduce to withdraw income support for mortgage interest payments. Carers are likely to be rather poor candidates for private mortgage protection insurance. Typically, those households are poor. Carers suffer as a result of loss of earnings and damage to their careers, pension provision is often less substantial and they have fewer opportunities to save. They also face higher domestic costs. It would be wrong to compound their poverty and insecurity with the threat of repossessing their homes.
460 It is likely that private insurers would not offer cover to carers, whom they would term "voluntarily unemployed". I do not think that my right hon. and hon. Friends would contemplate leaving carers without a safety net, whether it is provided by the state or by private insurance. If carers feel that they cannot shoulder the risk in the face of that insecurity, the added costs involved in care provision will fall on the state. The Government have recognised that private insurance mortgage protection may be unsuitable for the elderly and for some other groups. I hope that they will accept that carers should be included in that latter category.
I echo the plea that has been made to the Government to consider extending the employers' national insurance contribution holiday to people who have received invalid care allowance. As recipients of ICA, they are not required to sign on and it would be very unfair to penalise them subsequently as a result of a proposal that is intended to help them. Some 64 per cent. of former carers, and 76 per cent. of those aged over 50, are not in work one year after ceasing their caring responsibilities. I am sure that, in the spirit of the legislation, we shall look for better ways of helping them to rebuild their lives and return to society when they have completed their caring responsibilities.
I was glad also that the hon. Member for Dunfermline, West referred to the additional personal tax allowance.
I recognise that we can only gradually build up support for carers, whether it is through local authority service provision or through the benefit system. The Bill, and new clause 1, which is at the heart of it, establish the principle that we should provide that support with new clarity and force. In this area, as in others, generosity will reap rewards in terms of humanity, social cohesion and our self-respect as a society, as well as economically and politically. I congratulate the hon. Member for Croydon, North-West, as well as my right hon. and hon. Friends on their support for the policies embodied in the Bill.
§ Mr. David Hinchliffe (Wakefield)
The Carers (Recognition and Services) Bill represents the culmination of a lot of effort by many people and many important organisations that have worked for many years to reach this point. As I did not have the opportunity to speak on Second Reading, although I was present in the Chamber for that brief debate, it is important to pay tribute to a number of important individuals and organisations connected with the measure.
Obviously, I must start by paying tribute to my hon. Friend the Member for Croydon, North-West (Mr. Wicks) for his immense efforts on behalf of carers and for piloting the legislation to this stage of the parliamentary process. During my time in Parliament, I have seen a number of hon. Members make their names on issues with which they have had no personal affinity simply through the luck of the private Members' Bills ballot.
In this instance, it is important to emphasise that for many years my hon. Friend has had a deep personal commitment to the issues that are addressed in the legislation. It is highly appropriate that he should receive the plaudits for piloting this important measure through the House and into law. He has been a passionate campaigner on the issues addressed in the legislation and I pay a sincere tribute to him for his efforts in that regard.
461 It is also appropriate for me to refer to—according to her own description—the "nippy sweetie", my hon. Friend the Member for Dunfermline, West (Ms Squire), who has prodded me on many occasions, almost physically at times, about Labour's policy in respect of carers. She has been very dynamic in her support of the legislation.
Together with other hon. Members, I must single out the Carers National Association for special tribute. I have been aware of that organisation since the 1970s, when it operated under a different title and, was concerned with single women and their elderly dependants. It is marvellous to see the efforts of so many people who have been directly connected with caring culminate in today's legislation.
I do not wish to embarrass anyone any further, but I think that it is important to place on record my personal appreciation of the contributions of Jill Pitkeathley and Francine Bates. I should also mention a former colleague, Sylvia Heal, who has been particularly active in the Carers National Association campaign on behalf of young carers, which has resulted in a major shift in opinion on how we can assist that group. Sylvia is a classic example of how former Members of Parliament can lead more useful lives than they can by just sitting on the boards of privatised former public companies. She has done a marvellous job, as have her colleagues in the Carers National Association.
There are a number of local carers groups in my constituency who never stop reminding me of their needs and concerns. In some cases, they have travelled down 200 miles, while campaigning, to the House of Commons in support of this and other measures that affect them.
I should also mention a number of other organisations that have offered me assistance with policy issues relating to carers. There are too many to mention, but I must refer to the Alzheimer's Disease Society, the Caring Costs campaign, Scope, Contact a Family and many others, including Age Concern. They have all been helpful and have worked to bring to public attention issues relating to carers and their needs.
Last, but not least, I pay tribute to the Minister. Earlier this week, he nearly had to render first aid to me at the Dispatch Box; possibly he was in a caring mode himself at the time—
§ Mr. Hinchliffe
Anyway, I pay tribute to the constructive role that he has played. It is not often that I pay tribute to the Minister, but today is one such occasion. I appreciate the fact that he and his officials have gone out of their way to ensure that this measure is likely to become law before too long.
The Opposition support the central principle of this measure: the separate assessment of the ability of carers to provide care. I should like to set out why the Labour party concluded that a measure like this one was needed, and why we fully support it. As the Minister and my hon. Friend the Member for Croydon, North-West will know, we supported the community care reforms of 1990 but expressed our concern that they might give insufficient consideration to certain issues. One or two of us who were involved at the time should perhaps plead guilty to not having campaigned enough for a measure to meet the needs of carers.
In April 1993, when the changes in community care were taking place, the Labour party issued a discussion document called "New Directions in Community Care". 462 The document set out in some detail our concerns about the need for support for carers, which we felt had not been sufficiently dealt with in the 1990 legislation. We referred in the document to the key objectives set out in "Caring for People" and mentioned by my hon. Friend the Member for Croydon, North-West. Those objectives included ensuring that service providers made practical support for carers a high priority; the assessment of care needs, as my hon. Friend said, should always take account of the needs of the caring family, friends and neighbours.
We made clear our view that many carers were sceptical about whether that would really happen. We know of excellent examples in various parts of the country of local authorities and organisations giving carers genuine support, but we wanted to ensure that such practice became far more widespread so as to enable the changes of 1993 to have a real impact. Indeed, we made the following point:Too often carers are treated not as partners in care but as alternatives to service support.The same point has been made by a number of hon. Members today. We referred to information that had been published at about the time of the care changes by the Office of Population Censuses and Surveys. The latest evidence was that carers were receiving even less help then than they had been some five years before. That was an obvious source of worry.
We also identified a number of areas for which we felt that carers needed assistance. By that stage, thanks to the efforts of the Carers National Association, we had recognised the central point of this Bill—thatcarers must be the focus of support just as much as the people they are caring for.I am delighted to see that that point has become the central element in the Bill.
The document to which I referred, "New Directions in Community Care", which was issued at the same time as the care changes, predicted that in many respects the changes would prove to be a false dawn for many users and carers. I take no pleasure in saying that, to some extent—I think that the Minister will concede that this is the position—there have been problems. Reports have proved, especially those relating to carers, that the changes amounted to a false dawn.
In April 1994, the Alzheimer's Disease Society published a study of 100 selected carers. It was clear that 59 had received no assessment of their needs. Indeed, only 13 had a separate assessment. The National Federation of Women's Institutes undertook a study of rural carers. Over the same period, it found that one in three carers in rural areas received no regular support or help. My hon. Friend the Member for Dunfermline, West referred to Scope. The research of the Carers National Association has also been mentioned. It showed that in 1994 the care changes had made no difference to nearly 80 per cent. of the carers who were surveyed.
We took account of these findings in publishing, in consultation with a range of organisations, including those that I mentioned, the Labour party's consultation paper, entitled "Making Carers Count", in September 1994. I think that the Minister will be familiar with that document's central features. We began by saying that our main concern was to ensure that carers should have separate rights in law. We took the view that there was a need for a measure along the lines of the Bill that was drafted by the Carers National Association. We said also 463 that there should be the opportunity to have separate community care assessment. I sincerely welcome the fact that those specific points are addressed today.
The Opposition especially welcome the fact that the Bill covers both parent carers and young carers. In "Making Carers Count", we stated that the particular needs of thousands of young carers should be recognised and that young carers should have, access to the same services as other carers.
The needs of young carers have been unrecognised by hon. Members on both sides of the Chamber. Indeed, it has been said by hon. Members on both sides of the Chamber that perhaps none of us has been fully aware of the extent to which their needs have not been focused upon. The experience of many carers has been that of isolation: they have felt entirely alone in tackling a difficult situation that others could not fully appreciate. If that is a factor with adult carers, it is even more of one when it comes to young carers. I hope that the implementation of the Bill will lead to recognition of the isolation factor. Young carers have even less mobility and less ability to communicate their needs than adult carers. In many respects, they are not appreciated. Often, their difficulties and the problems with which they are struggling are unrecognised.
Given my social work background, I was aware, as were some other hon. Members, that there were young carers. However, even I was surprised by the numbers of young carers as revealed by the estimated figures produced by some respectable research. The figures focused our attention on the numbers of children and young persons involved in caring. We became aware of the 10,000 informal carers under the age of 16 years as a result of the Sandwell and Tameside work in 1989. That came as a shock to me. As my hon. Friend the Member for Croydon, North-West has said, numbers up to 40,000 have been mentioned. I do not know the basis of that research. We know, however, that many children and young people are tackling the task of caring, often without recognition.
I know from my own direct social work experience—it is somewhat dated, because it goes back to the 1970s, but I believe it still to be relevant—that often the young carer was seen as the problem. I can recall cases of non-school attendance that brought the circumstances of a child or young person to the attention of local authorities. Those young people were then seen as the problem, and not part of a much wider issue. I hope that the Bill will ensure that they are focused upon and that their needs are specifically taken into account.
I am ashamed to admit that I can recall several children being taken before juvenile courts who were found to be young carers. They were not at school because they were carrying out difficult caring tasks. It is not right that they should be seen as the problem. The wider issues should be addressed, and I hope that we shall start to do that with the elements in the Bill.
I pay tribute to the work of the young carers research group at Loughborough. A little while ago, I had the privilege at a conference of meeting Saul Barker, its director. I commend to hon. Members his speech at that conference and some of the publications that the research group has produced, which tell, in their own words, the story of young carers' experiences. They are very moving 464 experiences and have been recorded by the carers' colleagues at Loughborough. The Bill offers some possibility of the problems being addressed.
I want to be brief, as we want to make progress today, but I shall make just one or two cautionary points on resourcing, which I hope the Minister will address. That point has been mentioned by a number of hon. Members on both sides of the Chamber. My main concern about the Bill in its revised form is whether, in the present context and given the difficulties that they face, local authorities will be able to do justice to what we are asking of them in this measure.
The Minister will recall that, a few weeks ago, we debated the special transitional grant for the current financial year. I do not want to go into detail, but I think that he will accept that there are and have been, for whatever reasons—we are not here to debate them today—severe problems in the implementation of the care changes during the current financial year. We may well see even greater problems in that. I would welcome the Minister's thoughts, when he replies, on how the Government will address those points.
I feel strongly that it would be wrong to build up hopes, as has happened so often in this place, in social legislation and then not deliver the goods at a local level, particularly in a matter as sensitive as this. It would be helpful if the Minister would tie in some of these policies with other governmental or departmental policies. As the hon. Members for Stratford-on-Avon (Mr. Howarth) and for Sutton and Cheam (Lady Olga Maitland) mentioned, housing policies, DSS policies—a whole range of areas—have a bearing on the position of carers.
I know that my hon. Friend and others have given examples of carers and their circumstances. I recall many examples from my time in social work. The most harrowing, perhaps, from my point of view, was being a carer with my wife a number of years ago. As a number of hon. Members have said, when it happens, one suddenly realises the extent to which this issue must be addressed politically.
There are very real needs and problems that the House should tackle. I hope that the measure will prove to be a major step forward for the vast number of people who are directly affected by these issues.
§ Mr. Bowis
I echo the many tributes that have been paid to the hon. Member for Croydon, North-West (Mr. Wicks) for the imagination that he has shown not only in bringing the measure to the House but then going through its consideration to see how best it could be proceeded with. I am grateful to him for the enormous amount of work that he has put in. He was kind enough to pay tribute to my officials and to the officials in other Government Departments—indeed, my right hon. Friend the leader of the House was described as the emeritus Minister with responsibility for social services—and those tributes are gratefully received, but it is a two-way exercise. I am grateful to the hon. Gentleman for what he has achieved, and through him to Jill Pitkeathley and her colleagues at the Carers National Association. I echo the tributes that have been paid to the many organisations in the caring world that represent people with needs and those who look after them.
465 The two new clauses really contain the main thrust of the Bill. The debate has summed up the whole Bill, in a way. The Bill has received its Second Reading and passed its Committee stage. We are looking, as the hon. Gentleman said, to make changes to the Bill, so that the whole of the United Kingdom is covered.
My hon. and Scottish Friend the Under-Secretary of State for Scotland has been with me throughout to listen, intervene and confirm the pledge on the Children (Scotland) Bill. He will be following up any specifically Scottish matters that have been raised by hon. Members. I know that the hon. Member for Croydon, North-West has received reassurances on Northern Ireland, in terms of how Northern Ireland carers will be brought into the measure. The hon. Gentleman also rightly pointed out that part of the reason for the changes was the need to cover different categories, and happily we are able to achieve that.
Hon. Members on both sides of the House have referred to the importance of helping the family "in the round". We have the family as a whole in mind. The hon. Gentleman described a "carers' army", pointing out that caring involved more people than the national health service and social services put together. The NHS used to be described as the third largest employer in the world—after the Indian railways and the Red army. I am glad to say that we are looking after the carers' army today: I would rather look after that army than look after the Red army any day.
My hon. Friend the Member for Sutton and Cheam (Lady Olga Maitland), the hon. Members for Wakefield (Mr. Hinchliffe) and for Rochdale (Ms Lynne) and others mentioned resources. They are indeed important, and a number of messages have been delivered to me on this subject—to be passed on to avid followers of our debates in the Treasury and the Department of Social Security.
The question of ring fencing also arose. We have been able to ring-fence the transitional grant covering the new responsibilities involved in community care, but we have not been able to ring-fence all social services resources; it is for local authorities to make the necessary decisions. We have, however, been able to increase resources for respite care, and day care in particular. We managed to provide a further £20 million last year, and a further £30 million in the current year. That is proof of our commitment.
Another message that we have received is that the Bill on its own is not enough: social services departments must implement it. We have probably all been struck by cases of which we have heard today, in which the arrival of a carer has been seen as an excuse for the withdrawal of service. Our own message to social services departments is that that is not good enough. They should not assume anything; they should check that carers can cope, and that support for the user ensures their ability to do so. If they do not do that, they may find that they must take on the whole responsibility. I also agree that there should be discussions rather than clipboards.
My hon. Friend the Member for Stratford-on-Avon (Mr. Howarth), among others, called for support for special educational needs. Although we are not amending the Education Act 1981, which deals with such needs, other services—including the health service—have a duty to play their part in assessments for the purpose of statementing. If parents need support in that regard, it is initially the responsibility of local education authorities, 466 but it may become clear during that process that some needs are best met by social services departments. Measures in the Bill may play their part, but I shall bear in mind what my hon. Friend has said when we draft the guidance that is so crucial to making the legislation work effectively.
§ Mr. Matthew Carrington (Fulham)
I am concerned about the drafting of the guidance. Some social services departments, and possibly education departments, may well be tempted to use the voluntary assessment to impose a method of caring; in other words, they may intervene and say that the caring is not being done in the right way. Will my hon. Friend reassure me that that is not the intention, and that it will be up to the carer to decide what method is appropriate for the family and the disabled person involved?
§ Mr. Bowis
My hon. Friend is right to say that we want carers to be genuinely listened to, and want their wishes to be met. I shall bear my hon. Friend's thoughts in mind when we prepare the guidance.
As the hon. Member for Croydon, North-West said, we are changing the Bill radically, but that does not mean that certain categories of carer will be excluded. We are widening the scope. We have been able to avoid problems of definition by not having a specific definition of a disabled person or private carer but by relating it to those being assessed under the National Health Service and Community Care Act 1990.
We must ensure that local authorities take proper account of carers' circumstances when carrying out an assessment of those using community care services. Carers and users have different needs but those needs are linked. We do not want to create parallel rafts of services or parallel assessment procedures. There should be a strong bond between the assessment of carers and those being cared for.
Some carers who look after those they love will not want anything as formal as an assessment. The Bill makes that an option and local authorities should continue to follow our guidance and take due account of the informal care that is provided to a person who is receiving community care services, irrespective of whether the carer asks for a formal assessment. Whether assessments are formal or informal I hope that they will be seen as a chance for carers to have their say, in private if necessary, on what responsibilities they can take up and on those that they cannot be expected to cover.
Our guidance states that assessment should not assume a carer's willingness to continue to provide care. The starting point should not be, "You are coping fine aren't you?", but, "How are you coping with your current caring responsibilities, and how do you think you will cope in future?"
Hon. Members have spoken about parent carers and disabled children who, of course, are not assessed for services under the National Health Service and Community Care Act. Therefore, it is right to propose that parents or other carers are assessed in the light of Acts that are relevant to them. Like the hon. Member for Croydon, North-West, I want to ensure that parent carers have the same rights of assessment of their needs as carers of adults.
The hon. Members for Croydon, North-West and for Wakefield (Mr. Hinchliffe) and many other hon. Members spoke about young carers. They are of particular interest 467 to me and I have a special commitment to ensuring that the issue remains on our agenda. We must recognise the role of young carers. As the hon. Member for Croydon, North-West said, yesterday we had the pleasure of meeting a group of young carers that he had brought to the Palace of Westminster to see how this place works. That was an invaluable and memorable meeting for both of us. I certainly found it so.
As we listened to those young carers, our response was not one of pity but of admiration for their gutsy determination. We heard the concern that has been expressed in the debate that some young people are worried about asking for help in case their responsibilities are taken away from them and they will be taken into care and the family broken up. That must not be what it is all about.
We learned yet again that children must be allowed to be children first. They must be allowed the freedom to make mistakes and not forced to grow up too fast. They should be able to play with their friends without having to worry about whether mum is okay. They should be enabled to achieve their full potential at school and to feel comfortable with their peers and not to be too different from their friends.
I shall not quote in detail the messages that we have received. The Sefton carers newsletter came with notes from two carers, one of whom is a 13-year-old whose mother has multiple sclerosis. The two of them live alone and that child simply said:People who look after their mum need someone to talk to.That is often what it is all about. It is about having someone to contact. It is important for them to know other young carers but they should also know an adult who can make sure that they are okay. They should also have the support of the young carers groups that we met and who give such excellent support to young carers in various parts of the country.
Young carers appear to have suffered from a lack of recognition in the past. That has changed and I am determined that their needs should become more visible. Our social services inspectorate is planning further work to spread good practice in that field and I intend to ensure that the topic remains on the agenda. At the end of next week, our chief inspector will send out a letter reminding authorities of the importance of making links between community care legislation and legislation for children to ensure that the needs of young carers and the people for whom they care are met.
The hon. Member for Dunfermline, West (Ms Squire) tabled amendments and, while I welcome the principles behind them, I feel that the matters would be tackled better by accompanying guidance. If a carer or a person being cared for has communication difficulties, arrangements must be made to establish their views and capabilities, to ensure that an assessment is carried out in a meaningful way.
The principles in the hon. Lady's amendments would be best covered by departmental guidance, and I am pleased to assure her that guidance will be issued by the Department if the Bill is passed. That guidance will go into considerable detail about the way in which assessments of carers should be carried out, and it will cover carers with communications difficulties.
468 We will also consider the problem of more general language difficulties. The provision of sign language, an interpreter, large print or braille may need to be made if communication is to be effective, and people for whom English is not the first language must also be taken into account. I hope that the hon. Lady accepts the assurance that her concerns will be addressed comprehensively in departmental guidance. I hope that she will feel able to withdraw the amendments.
I commend new clause 1 to the House, as I commend the Bill as a whole.
§ 1 pm
§ Mr. Wicks
We have had a full and positive debate about the Bill but, because it has been positive and conducted in such a good sprit, it will no doubt fail to be fully reported in the newspapers. If one of us had thrown a blancmange at another Member, you would have ruled it out of order, Dame Janet. It would, however, have made the front pages of the papers. It is a problem of our times that newspapers do not discuss serious public policy matters as they are debated by the House.
There is not enough time to respond to all the valuable points made by colleagues from both sides of the House, and I recognise the need to make progress. The hon. Member for Sutton and Cheam (Lady Olga Maitland) raised important issues about parent carers. I was particularly struck by her point that parents who care for a disabled child who has grown up and become an adult worry very much—understandably—about what will happen to their child when they die or can provide care no longer.
I am sure that she was right to say that that is one of the things which must be taken into account in any sensitive assessment of need. It is surely right that discussions with such parents take place sooner, rather than later. If discussions only start when the parents can care no more, or when one of them has died, it is too late. That is an insensitive time.
The hon. Lady also raised important issues about the needs of those caring for schizophrenics. That is one of the most difficult and heart-rending situations in the whole debate, and I am pleased that it was raised in that way.
My hon. Friend the Member for Dunfermline, West (Ms Squire) used some Scottish language—which we did not fully understood—to describe her role in the Bill. I am bound to say that she has been a great source of strength to me personally, not only during the framing and pursuit of this Bill, but in discussions on the whole issue of community care. She said to me—rather humbly, I thought—that she had acted as my parliamentary private secretary during the framing of the Bill. She did, in fact, act as a tough-minded and rather brutal Chief Whip. I am standing behind the Opposition Deputy Chief Whip, so I know what a brutal Whip looks like.
My hon. Friend the Member for Dunfermline, West tabled two important amendments regarding those carers who have communication difficulties. She will have heard the Minister's statement that that matter may be best tackled in guidance, not least because—as the Minister said—other groups, including those for whom English is not the first language, may want their needs to be looked at in the guidance. Again, it comes down to good practice.
469 I, too, hope that, having had a discussion and raised the important issue, she will accept the need for guidance on the matter and withdraw her amendments.
I was pleased by the discussion about the position in Scotland. I am pleased that the Under-Secretary of State for Scotland, the hon. Member for Edinburgh, West (Lord James Douglas-Hamilton), said in an intervention that he would ensure maximum consistency between England and Wales and Scotland. We welcome that assurance.
I know that the hon. Member for Bolton, North-East (Mr. Thurnham) wished to be brief because his Bill will come up for discussion later. He made the point that he did not want to speak for too long, lest he talked his Bill out—and, more important, mine. He referred to the danger that he might score an own goal. I am sure that, in order to prevent that, those of us who are present will seek to play the role of David Seaman, the Arsenal goalkeeper and prevent the hon. Gentleman from scoring an own goal.
§ Mr. Wicks
My hon. Friend the Member for Wakefield does not understand jokes about football and the way it should be played.
The hon. Member for Rochdale (Ms Lynne) raised several issues, but particularly focused on young carers. I was grateful both for her contribution to the debate on that issue and for her support and the support of her party for the Bill.
The hon. Member for Beckenham (Mr. Merchant) made an important speech. We last joined in debate in this Chamber on the issue of the Croydon tramlink. He did not want it to go to Beckenham, for some strange reason. We thought that the people of Beckenham deserved it. Today we are running along the same lines in supporting the Bill. The hon. Gentleman spoke movingly about his own experience and the experience of his extended family of the issues at stake. He was right to remind us that the matter is no academic issue. Within any extended family, with few exceptions, people either need care or are carers. In many families, there are both.
My hon. Friend the Member for Greenock and Port Glasgow (Dr. Godman) raised the important implications for Scotland. I take the point that, with new councils and social work departments in Scotland, any requirements on those departments will be particularly challenging. I am sure that the Under-Secretary of State for Scotland heard my hon. Friend's view that guidance should be aimed not only at the officials and directors of social work but at new councillors; that we should find ways of informing new councillors about the implications of the Bill, albeit within the context of general community care.
The hon. Member for Rutland and Melton (Mr. Duncan) supported the Bill but sounded a note of caution about its implementation. We do not want to introduce a new universal provision for carers, whether they want it or not. We are about a greater sensitivity than that, even though we are establishing rights in law. Again, it will come down to good practice. In framing guidance, I expect the Department of Health to consult wisely not only with organisations but with groups of carers. I have certainly found that the experts and the best teachers are the carers.
The hon. Member for Stratford-on-Avon (Mr. Howarth) has been a great supporter of the Bill from its inception and he is one of its supporters. I am grateful for his kind 470 words. I thank him not only for his important speech today but for his support throughout this endeavour to put the Bill on the statute book.
I have already paid tribute to my hon. Friend the Member for Wakefield, even though he does not get the soccer jokes. I repeat those tributes. He has been a strong supporter of carers and a committed one. I am grateful for his words today. I am also grateful for the words of the Minister. I have already paid tribute to his role. I was grateful for his response to a colleague in which he said that the Bill was not in the business of imposing anything on carers. The assessment is not an examination. It is the opportunity for the carers to take control and discuss with the appropriate authorities what would make their lives better. It is obviously a voluntary assessment—it would never be compulsory, but it was important to clarify that.
I also welcome the Minister's strong words about young carers and his important statement today that, next week, the chief inspector for social work and his department will issue a letter to social service authorities about how the needs of young carers are best met.
In addition to the fact that young carers are on the face of the Bill and have the same rights as any other carer, the extra guidance from the chief social worker will be very welcome indeed. It is a clear sign that we are moving in the right direction.
When we met young carers yesterday, the Minister and I were impressed by them and by the fact that, through the Carers National Association, with support from appropriate public authorities, they are in young carers groups and have the opportunity to meet people in similar situations. That is clearly a major source of support for young carers and I hope that the House will find ways to encourage more such groups—although I notice that occasionally they are known as the YCs, but we will ignore that—because we need more of them in more parts of the country. Perhaps the Minister's Department can help to encourage that.
Those of us who do not get 100 per cent. in procedural exams are faced with some complexities when we look at the papers before us. May I remind colleagues that we are largely rewriting the Bill for good and positive reasons—to include more carers—so, when the question is put that clause 1 and 2 should stand part, I invite hon. Members to vote no because we are taking out the old clauses and will later have an opportunity to vote in favour, I hope, of new ones. I will say no when the question is put and supporters of the Bill should do the same.
§ Question put and negatived.
§ Clause 1 disagreed to.
§ Clause 2 disagreed to.