Care in the Community

HC Deb 14 June 1999 vol 333 cc127-36

Motion made, and Question proposed, That this House do now adjourn.—[Jane Kennedy.]

10.56 pm

Mr. Archie Norman (Tunbridge Wells)

I am delighted to have this opportunity to raise the question of the care of the mentally handicapped—or as we now know them, people with learning disabilities—in the community. I am delighted not just because it gives me a break from the world of corporate mergers and takeovers but because it is a subject in which I have a very personal interest.

I have a brother who is mentally handicapped. He used to be accommodated in a national health service hospital and is now cared for in the community. The subject is also topical in my constituency because The Pines care home was recently threatened with closure. I want to raise the question of The Pines because it illustrates so many of the dilemmas and problems facing us concerning policy on the care of those with learning disabilities in the community.

The Pines was built only 11 years ago. At the time, the 24 residents, who are accommodated in clustered bungalows around their therapy centre, were assured that it would be a home for life, as were their relatives. Most of the residents were moved out of a major NHS hospital. Despite the home's being only 11 years old and ideal accommodation for the relatives and those who live there, it is threatened with closure by the area health authority.

It is not that there are not good arguments for closure or movement; there are of course two sides to every case. This case illustrates the extent to which local authorities and officials are pursuing a policy of accommodating people which to many seems doctrinaire—the policy of normalisation, pushing people with acute learning disabilities and mental handicap into ordinary houses in ordinary streets", despite the fact that, very often, such accommodation is uneconomic and wholly unsuitable for such people. The case also illustrates the lack of involvement of parents and relatives of people with learning disabilities. They are in many ways without any rights; there is a real sense of helplessness when faced with officialdom and official policy.

The Pines is not unique; similar situations arise in many areas across the country. The problem is growing, and is bound to, because, over the past 20 or so years, we have, for understandable reasons, closed so many long-stay beds in NHS hospitals for people with learning disabilities. The numbers have declined from 65,000 in the mid-1960s to 3,000 today. At the same time, the number of care in the community places has only risen from 7,300 to 36,000. By definition, therefore, many of the people previously accommodated in some permanent care of the state are now resident elsewhere.

There is already a shortfall in places. Restcare estimates a shortfall of some 25,000 residential places for people with mental handicap. An increase in demand is forecast for the next two decades because people with a handicap of one kind or another are expected to live longer. Many of these people are currently accommodated with ageing relatives, on whose death those residents will have to be moved into community care.

Now is the time for a thorough review of our whole approach to care in the community of those with learning disabilities. It is time to flush out and to tackle the dogma that has grown up following the abolition of the major residential hospitals, the understandable and absolutely correct move away from institutional care—the dogma that is all about normalisation, moving people into ordinary homes in ordinary streets. It is time to bring back a much more individual approach to care, and to create clustered homes in communities, which I believe to be the way of the future. It is time to create a framework of rights for those people who are, in a real sense, dispossessed by the health services and by the state. These people are in the possession of the state; they are totally dependent. They and their relatives need rights. It is time to clarify responsibility for these people as between the national health service, social services and local authorities.

Mr. John Burnett (Torridge and West Devon)

I wonder whether the hon. Gentleman is aware of the judicial review of the case of Marden house in Exeter, in which the actions of the North and East Devon health authority were successfully challenged in the High Court—the case is now going to the Court of Appeal. A home just like the home that the hon. Gentleman described has been challenged successfully in the High Court. I wonder whether he is aware of that case, and whether that might be of some—

Mr. Deputy Speaker (Mr. Michael J. Martin)

Order. The hon. Gentleman must be careful, because some matters are sub judice.

Mr. Burnett

I take that point, Mr. Deputy Speaker, and I am grateful to you. The case is going through the courts, but it does illustrate—

Mr. Deputy Speaker

Order. If the matter is going through the courts, it is not a matter for us to discuss this evening.

Mr. Norman

I am grateful to the hon. Gentleman for mentioning the case, which shows that the problem is prevalent throughout the country, and that the case in Tunbridge Wells is far from unique.

It is time to end the dogmatic approach and the view that there is one right solution: normalisation. It is time to bring back an investment in communities of people with a learning disability within which they can have a sense of companionship, belonging and role. I believe that there is a great deal more dignity for people with a learning disability if they can live together, if they can choose their friends within a community and if they can find a role in that community, than if they are in a sense isolated in an ordinary street, where they have very little contact with their neighbours and those who live locally.

The time has come to move to medium-sized and clustered homes and away from single houses in relative isolation. It is time to concentrate on care in the community, not dissipation in the community. Many residents today—

Mrs. Claire Curtis-Thomas (Crosby)

I should like to comment on some of the things that the hon. Gentleman has said. He mentioned the dogma of care in the community. As the mother of a daughter with a learning difficulty, not a mental handicap—a term that I find wholly offensive—as someone with a sister with a learning difficulty and some physical difficulties and as, until recently, the daughter of a person who has quadriplegia, I very much welcome the inclusion of my relatives in a community, instead of the ghettoisation that the hon. Gentleman seems to be advocating. I believe that the latter would be a return to the past.

Most of us who are striving to get the best, not necessarily for an individual's parents, but for that individual, very much welcome the ethos that now pervades the social services. My experience of my community is that, at all times, it has tried to do the very best for the individuals whom I love and care for.

Mr. Norman

I thank the hon. Lady for enabling me to clarify the point. I am certainly not advocating a return to the past. The move away from the large, isolated institutions was absolutely right, but we must have the right policy for each individual. There are individuals—relatively able people with relatively slight learning disability—who are well accommodated and can be integrated in local communities and be cared for best in that way. There are problems with that approach—we understand that—but that may be right for some individuals. However, in the case of those with a more acute learning disability who need 24-hour care and attention, it is my experience and belief, which are shared by residents of The Pines and their relatives, that they value being part of a slightly larger community where their choices are greater.

Living in such a community enables people to select their friends from a wider circle. All too often, when they are moved into small homes, with perhaps only three, four or five residents, their friends and companions for life are selected by the state or by the local authority. That cannot be the right approach.

Very small homes are a much more expensive mode of care. There are various estimates of the cost, but it is clear from all those estimates that clustered homes where specialist care and facilities can be shared are likely to be more economic. In a document entitled "The Case for Residential and Village Communities" and prepared for the Rannoch Trust, Baroness Cox and Lord Pearson mentioned that Government figures for annual revenue costs for 1994 showed that it can cost £74,000 a year to support an individual in the community, whereas a place in a congregated village community with all services included can cost £25,000 a year.

There are questions about those calculations, but it is clear that some sharing of facilities is likely to be more economic. There will be a huge problem for the funding of such care, and the most important priority is that in future we should be able to finance the care that all people with a learning disability deserve.

It is estimated that 50 per cent. of those with an acute learning disability require more or less full-time or continuous medical support. It is much easier to provide such support in a slightly larger community.

It is important to remember that people put into ordinary houses in ordinary streets are totally dependent on their professional carer. There is no doubt that many carers are fantastic people who are devoted to the residents, but others have no great qualifications for the role. They are working with people who have complex problems and need complex help and often medical support as well. There is an increased risk to residents who are in the hands of someone relatively unqualified for 24 hours a day. Grouping and clustering in village communities allows much better quality support.

The issue is not whether Government policy supports one form of care or another, but that we need clarification of the right circumstances for the individual. As the hon. Member for Crosby (Mrs. Curtis—Thomas) mentioned, it is a matter of finding the right situation to meet individual requirements. It is not clear how that should be done, although it is clear that, in different local authorities, different solutions are adopted.

Dr. Maurice Brook, vice-chairman of the National Society for Mentally Handicapped People in Residential Care, points out that all too often these people do not have much help or support. Many cannot make decisions without a great deal of help. Some have relatives who can stand up for them, but others do not. They are entirely in the hands of local officials. In many cases, as Dr. Brook states, choice is often denied because of locally based officials. He continues: The most important test is the quality of life of an individual, not any ideological assumption about what model of care is best. Whatever people may say, it is the experience of many that there is an official dogma regarding the best approach.

Dr. Brook goes on to state: The views of parents and relatives should be treated as the views of an individual. In too many areas the Local Authority tries to impose their views. Those who are able to impose decisions that are in conflict with the wishes of parents and relatives are not democratically accountable. I believe that many relatives across the country share that feeling. The time has come to review the entire framework.

The second major issue concerns the rights of those with a learning disability who are resident in homes supported by the NHS or social services. Although there is much talk of rights, in practice the experience of people such as the residents of The Pines and their relatives and the residents of many other homes across the country is that the reality does not match the talk. In too many instances, changes are made without adequate consultation, and where that consultation takes place it is often ignored. I shall illustrate that with the instance of The Pines. I have a letter in my possession written to residents by Kelsey Care, which is a sub-contracted care organisation. In most respects, it is a fine organisation. The letter is dated November 1990. It asks what would happen if ever there was a need or desire to move the residents elsewhere: As the residents of The Pines will have either a tenancy agreement or a licence giving them a certain security of tenure, any decision would have to have the agreement of the persons concerned, parents or relatives, members of staff and the health authority. In reality, that has turned out to be entirely untrue. Today, The Pines is threatened with closure. If it were not for the action taken by residents, many people would argue that it could be in the process of closure now, without adequate consultation and certainly without the permission of the relatives.

Is it not time that people who are so vulnerable and dependent on support from the state and residing in homes maintained by the national health service or by social services had an established set of rights of their own within a clear framework? A process should have to be followed before their lives can be entirely disrupted, before they can be taken to locations to live with people whom they might not know and not of their own choosing, and before they can be moved miles away from their relatives and their families? Is it not time that we established a basic framework that will prevent those things happening without the appropriate permissions and consents of those who are closest to them?

Is it not time there was a more effective process to encourage the involvement of parents and relatives? All too often, the system works to alienate those who should be supportive of people with learning disability in care. That applies not to those who have lived and been brought up at home with support, but in many instances to those who have been institutionalised and have lost touch with relatives.

One illustration concerns financial support. As parents age, people with a learning disability have to move into homes. It would be desirable if parents felt able to leave them bequests or moneys in other forms to provide enhanced support in future. Unfortunately, they fall into the classic means-testing trap whereby if the parents leave them money, that bequest represents a tort in terms of paying for their benefits. As a general practice, the making of bequests and the leaving of moneys in other forms is not done as much as it should be.

Should it not be an explicit part of the Government's policy and programme to involve parents and relatives more substantially and provide them with an on-going involvement or participation in the running of homes? Should not that be part of the new framework?

Is it not time to clarify responsibility for those with severe learning disability? Over the past 20 years, we have seen a huge transition from the NHS and the great NHS hospital institutions into local authority care. However, local authorities vary substantially in their approach to the problem and the way in which they make provision. It is well understood by those who are close to these matters that the level of benefits provided varies as well. Provision is patchy. The danger is that as local authority funding is squeezed, particularly in those areas where the cost of support and of property is much higher, it is the residents who will end up suffering.

Is it not time that, as we make the transition into local authority care and support from social services, the role of the NHS in terms of medical support should be clarified? An NHS Confederation document dated 14 June states: There is a lack of core understanding of what the NHS is responsible for. This hampers service development. Access to general healthcare such as general practice, dental and ophthalmic services is poor. It goes on: There is no up-to-date national government policy on health services for people with learning disabilities. The last policy document was published in 1992 and is in urgent need of updating. I know that some work is being done on updating that policy, but it is high time we had an outcome.

I believe that the time has come for a wholesale review of the framework of policy for those with learning disabilities who are cared for in the community. At times, it is hard to avoid forming the impression that that part of our community is a forgotten corner of society. All too often—as the great institutions are being closed, and rightly so, and as people emerge into the community—there is a risk that they will be dissipated in that community and lost in it; that parents will be disfranchised; and that the most vulnerable people will not be given the rights that we want to afford to them and which we would afford to the average citizen.

11.15 pm

The Parliamentary Under-Secretary of State for Health (Mr. John Hutton)

I congratulate the hon. Member for Tunbridge Wells (Mr. Norman) on his choice of subject for this debate. The issues that he has raised, although they arise from a particular situation in his constituency on which I shall comment in a moment, go much wider and are important for all people with learning disabilities and their parents, relatives and friends.

Health and social services play an important role in the lives of people with a learning disability, because many of them will rely on those services throughout their lives. We need to ensure that they are delivered in ways that are responsive to them as individuals, enabling them to develop their full potential and to be as independent as possible, yet providing appropriate support and protection for those who need it.

The hon. Gentleman raised the particular issue of the future of the Pines in his constituency. As I am sure he would acknowledge, decisions about the provision of services in a particular locality are rightly a matter for the local statutory authorities. Health and local authorities are best placed to make such decisions in the light of their knowledge of local needs and resources, taking into account departmental guidance and the needs and wishes of the local people with learning disabilities and their relatives.

I understand that West Kent health authority has no immediate plans to close The Pines. Choice Consultancy Services, which was employed by the health authority to review learning disability services in the southern part of west Kent, concluded that the service provided at The Pines in some respects fell below currently applied standards. The health authority is therefore unable to give a firm assurance at the moment that reprovision of the service at The Pines will not be considered at some time in the future. It has, however, confirmed that any possible reprovision will involve full consultation with residents and their relatives and will take account of individual needs. That is as it should be.

Services for people with learning disabilities are becoming increasingly responsive to individual needs. Many people with learning disabilities have a greater choice of living, work and leisure opportunities open to them than ever before, giving them a far better quality of life than was possible in the institutions of the past. The hon. Gentleman recognised that in his contribution.

Many health and local authorities are finding that the aspirations of people with learning disabilities and their families are changing and that what might have been acceptable forms of reprovision in the early days of hospital closures need to be replaced by even more integrated and individualised services.

I have visited services—a village community in Berkshire—and have talked to people with learning disabilities and their relatives. Many would prefer to live in ordinary houses in ordinary streets, and we need to try to respond to that wish when it is clearly expressed. Others would prefer to live in larger units or residential or village communities. It is important that, in planning and commissioning the services to be provided in any given area, health and local authorities take decisions based not on rigid ideology, but on what is best for the individuals concerned. I agree strongly with much of what the hon. Gentleman had to say on that point.

People with learning disabilities and their families have a wide range of needs and an equally wide range of views about the best ways of meeting those needs. It is therefore important that, as far as is practicable, individuals and their relatives should be offered real choices.

Mrs. Curtis-Thomas

Will my hon. Friend please clarify one point'? The hon. Member for Tunbridge Wells (Mr. Norman) mentioned financial considerations and said that running a communal home costs substantially less than furnishing an independent home in a normal street. Will my hon. Friend confirm that financial considerations are not given any notable significance in decisions about what constitutes an appropriate home for an individual?

Mr. Hutton

The Department's current guidance to authorities on developing health and social services for people with learning disabilities is quite clear on choice. It states that the aim should be to arrange services on an increasingly individual basis, taking account of age, needs, degree of disability, the personal preferences of the individual and his or her parents or carers, culture, race and gender. The guidance gives authorities considerable flexibility over the provision of services, including residential services. There is nothing to prevent authorities from commissioning, or providing places in, supported living arrangements, group homes, residential or village communities or indeed any other form of provision if they deem that to be appropriate. What is important is what will best meet the assessed needs and wishes of the individual and his or her relatives within the resources available.

Guidance issued in relation to the 1992 directions on choice also made it clear that there should be a general presumption in favour of people being able to exercise choice over the residential services they receive, and that accommodation should not be deemed unsuitable simply because it does not conform to the authority's preferred model of provision. That is an important point.

To help authorities decide on the most appropriate pattern of residential services for their area, the Department of Health commissioned an independent evaluation of the cost and outcomes of various forms of residential provision for people with learning disabilities. This complex research compared dispersed housing, such as supported living and group homes, with NHS residential campuses and village communities. I hope that the results will be published later this month, and I am sure that the hon. Gentleman and my hon. Friend the Member for Crosby (Mrs. Curtis—Thomas) will read the research findings with great interest.

Residential services are not the only services used by people with learning disabilities, and the Department continues to monitor progress in implementing the guidance on learning disability services published by the previous Administration in 1992. In 1997, a national inspection of learning disability services in eight local authority areas found that significant progress had been made in developing more responsive services, such as an expanding range of accommodation, more diverse day services, employment schemes, respite care, domiciliary care services and specialist services for special groups, including those with additional disabilities.

However, the inspection also showed that, despite those significant improvements, services vary both between and within areas, and the range and quality of services currently provided for people with learning disabilities do not yet meet the needs and aspirations of users and carers. I am sure that the hon. Gentleman would agree with me that that is not acceptable. More work needs to be done if we are to provide better services in this important area.

We are taking wider initiatives, which, if I had time, I would go into in more detail. The main thrust of those initiatives, which we outlined in our White Paper "Modernising Social Services", is to raise the quality of services across the board for people with learning disabilities and for other users of social services. We want to ensure that those arrangements are properly enforced, which is why new regional care commissions will operate to national regulatory standards. I hope that that will make a significant contribution to raising the quality and consistency of services.

I hope that the hon. Gentleman welcomes the provisions in the Health Bill that will allow for closer working arrangements between the NHS and social care. Our proposals for pooled budgets, lead commissioning and integrated provision should make it easier for those two statutory authorities to work more closely together. That will be very important, and is of special relevance to services for people with learning disabilities. The provisions in the Health Bill will offer exciting new opportunities for service development.

I shall quickly deal with some of the learning disability initiatives that the Government currently have under way. One of our first steps has been to obtain a clearer picture of current services and of the progress made in implementing the guidance on learning disability services issued in 1992. Officials have studied the plans for the closure of the remaining old long-stay hospitals. To supplement the information obtained from the national inspection, we have undertaken a survey of 21 local authorities and their matching health authorities. The results, which will be published shortly, will provide much useful information to help both local and central decision making.

We have also been working to improve health services for people with learning disabilities. Last year, we published "Signposts for Success", which is good practice guidance on meeting the health needs of people with learning disabilities. That was followed up by regional workshops, and this year we have published "Once a Day", a handbook for primary health care staff. Further work in this area is planned. We are also concerned to improve the skills and competencies of front-line NHS and social care staff.

The needs of users and carers are central to all our thinking. To help us, we have set up a user group for people with learning disabilities and a learning disability advisory group, whose members include users and relatives as well as representatives of the statutory and non-statutory sectors. The groups provide an important forum in which to discuss the many issues surrounding the development of services for people with learning disabilities.

It has not been possible in the time that I have had available to go into some of the subjects to the extent that I would have liked, but I am grateful to the hon. Member for Tunbridge Wells for raising this important subject and for the way in which he couched his remarks. The Government will continue to seek improvements in the quality and responsiveness of services for people with a learning disability. In doing so, we intend to work closely with all those who share our ambition to ensure better services for that vulnerable client group. I should be happy to make sure that the hon. Gentleman is kept fully abreast of any policy developments. We are committed to a first-class NHS and first-class social care for all the people of our country. People with learning disabilities will not be left out of the process.

Question put and agreed to.

Adjourned accordingly at twenty-six minutes past Eleven o'clock.