Mr. Greville Janner (Leicester, West): I am pleased to have an opportunity to present a petition signed by more than 1,300 people who live in the Beumont Leys area of my constituency, where the electricity showroom is to be closed tomorrow. This is not a matter of huge national concern, but to the people who live in the area it is a disaster. The showroom has provided a service that is now to be destroyed in the wake of the privatisation of the electricity industry and that provides jobs which my constituency can ill afford to lose, as we have the highest unemployment rate in the area. The petition reads:
The Humble Petition of citizens of Leicester, West, Councillors, County Councillors and residents of Beumont Leys in the city of Leicester, sheweth that the House do note the great anxiety of the citizens of Beumont Leys Estate resulting from the proposed closure of the Electricity Showroom in Beumont Centre in Beumont Leys and that the same closure would result in hardship to residents of all ages but especially to elderly and disabled people. Wherefore your Petitioners pray that the honourable House do urge Her Majesty's Government to seek all ways to avoid the closure of the Electricity Show room and to ensure that adequate communal facilities be provided for this estate; that Her Majesty's Government take all appropriate steps to ensure that Beumont Leys in the city of Leicester and all other estates like it be assured of all necessary facilities for the normal communal needs of their communities.
To lie upon the Table.
Considered in Committee .
in the Chair ]
Question proposed, That the clause stand part of the Bill.
`--(1) Subject to subsection (3) below, in any case where-- (a) a local authority carry out an assessment under section 47(1)(a) of the National Health Service and Community Care Act 1990 of the needs of a person ("the relevant person") for community care services; and
(b) an individual ("the carer") provides or intends to provide a substantial amount of care on a regular basis for the relevant person,
the carer may request the local authority, before they make their decision as to whether the needs of the relevant person call for the provision of any services, to carry out an assessment of his ability to provide and to continue to provide care for the relevant person; and if he makes such a request, the local authority shall carry out such an assessment and shall take into account the results of that assessment in making that decision.
(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,
the carer may request the local authority, before they make their decision as to whether the needs of the disabled child call for the provision of any services, to carry out an assessment of his ability to provide and to continue to provide care for the disabled child; and if he makes such a request, the local authority shall carry out such an assessment and shall take into account the results of that assessment in making that decision.
(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.
Column 423(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.
(7) In Schedule 1 to the Local Authority Social Services Act 1970 (enactments conferring functions assigned to social services committees) at the end there shall be inserted--
"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-- (a) a local authority make an assessment of the needs of any person (`the relevant person') under subsection (1)(a) above, and (b) a person (`the carer') provides or intends to provide a substantial amount of care on a regular basis for the relevant person,
the carer may request the local authority, before they make their decision under subsection (1)(b) above, to make an assessment of his ability to provide and to continue to provide care for the relevant person; and if he makes such a request, the local authority shall make such an assessment and shall have regard to the results of that assessment in making that decision.
(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.".'.
Column 424And 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
Column 425but 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
Column 426his 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.
Column 427In 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
Column 428new 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. 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
Column 429know 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
Column 430crucial 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.
Column 431Although 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.