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Community Care (Mentally Handicapped)

Volume 173: debated on Thursday 24 May 1990

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2 pm

I congratulate my hon. Friend the Minister on his appointment. I owe him a double debt of gratitude because not only is he responding to this debate, but he visited Bolton earlier this week when he had only just taken on his new responsibilities. It was his first regional ministerial visit, and it was most helpful and useful.

I am sure that my hon. Friend will recall that he visited the Heywood pilot project for day therapy services and met some of those suffering from profound physical and mental handicaps and also their families. Those people benefit from the much-needed services provided by that pilot project. Later that day, my hon. Friend visited the health authority headquarters for a unique meeting with people in the area responsible for community care. Six groups were represented: the parents handicap action group; the social services, through its newly appointed chairman and the director of social services; the North Western regional health authority; Bolton health authority; the community health council and the Brookvale voluntary centre at Prestwich, which sent two directors. That centre provides a service that does not really fit the North Western regional health authority model. However, it provides a high quality of service at a relatively low cost, and it has a long waiting list of parents who want their children to go there. The meeting was remarkable, because it enabled many people to get together who otherwise would not often have the opportunity to talk about the need for services.

I wish to concentrate on those who suffer from profound mental and physical handicaps, as they have the greatest priority need. The meeting discussed the need for a centre of excellence in Bolton to provide a service for those people. We discussed the need for both capital and revenue funding and also the need for both the centre itself and the provision of a network of homes. We must not think that we can rely simply on a dispersed network of homes to provide all the necessary facilities and services.

Bolton faces a crisis of need for severely handicapped people with challenging behaviour. There is a chronic shortage of day care therapy, respite care and residential care. The causes of the crisis are numerous, but, in particular, handicapped people are now living much longer because of the better care available. There is a crisis in the immediate locality because of the stop placed on admissions to long-stay mental institutions such as Brockhall and Calderstones. Bolton has a particular problem because of the excess cost of the network homes, which has resulted in a shortfall of provision. There is also a shortfall in the provision of other domiciliary services for those who are still at home. There is a complete inadequacy of domiciliary therapy services for the profoundly multiple handicapped who are at home.

The result of all that is a major problem. There are children who, after they reach the age of 19, are regressing because of the lack of suitable services. Parents are at breaking point. If my hon. Friend the Minister had spent longer in Bolton, he could have met parents such as Mrs. Hargreaves. She has often written to me saying that she does not know how she can continue to look after her son.

Because of the lack of facilities in Bolton, people are being sent elsewhere, and that is the complete opposite of what I understand by community care. In addition, because wards at Brockhall are being closed, people are being moved from pillar to post, from ward to ward, because there is no alternative provision for them in Bolton. As the chairman of the social services committee said, we now have a two-tier service in Bolton. For some there are the neighbourhood network homes, and for others, who are still in the family home, there is a most inadequate service.

The solution that I put forward at the meeting and which I press again now is that we should build and staff a centre of excellence in Bolton which will provide day therapy services for 20 or 25 people each day, and a respite care service with some 12 beds. That would provide a support and advice service for some 80 families and, possibly, a service to other areas—a mini Peto centre in Bolton.

I want to link such a centre of excellence with the need for a medium secure unit, as has been accepted in many of the reports that have been available in recent years which suggest that a unit with two times 12 beds should be considered for Bolton. I press my hon. Friend to investigate the need for such a service in Bolton and to question the North Western regional health authority on its attitude to the provision of funds for such a centre, asking it to explain further its preoccupation with looking only at the provision of neighbourhood network homes on a dowry basis for those coming out of the long-stay institutions.

I mentioned to my hon. Friend the other day that a former permanent secretary at the Department of Health and Social Security said that, if one is not confused about community care, one is not thinking clearly. I have found this a difficult subject to think clearly about, but it is much simpler to understand the issues if one considers where the greatest priority lies. I have no doubt that the greatest priority is those people who suffer from profound mental and physical handicaps and who present challenging behaviour. According to the Department of Health's 1989 report entitled, "Needs and Responses", they present
"One of the most serious challenges to care in the community".
In a recent letter to me, Mencap said that its research into the needs of that group shows
"an abysmal lack of appropriate help, support and relief for these families".
Therefore, in this short debate, I want to concentrate on the needs of that group as the greatest area of priority.

There is no doubt that in Bolton that group experiences the greatest shortfall, and I am sure that that is the case nationally as well. The people we are talking about are not only mentally handicapped; many of them are blind and/or deaf and/or paralysed. It is difficult to think of people with greater needs. We must bear in mind the suffering of those people, the massive burden of care on their relatives and the great love that those relatives give their children, but also the great sacrifices involved.

If it is possible to prove blame in a court of law, damages in excess of £1 million can be assessed for people with such severe handicaps. Various figures have been given, but in a letter that I received yesterday Mencap estimates that there are about 32,000 such people nationally, approximately 50 per 100,000 of the population—a higher figure than some of the estimates that I have seen. If we multiply the 32,000 people by £1 million as the value of the damages that would be assessed if it were possible to prove some blame, we would be looking at a problem which nationally has a value of £32 billion. That is the size of the problem that we are addressing in this short debate.

The problem has been dumped largely on the shoulders of loving carers such as Mrs. Cummings, whom my hon. Friend met. She did not volunteer for the task, but she has taken it on magnificently, and we owe every possible help to such people. In many cases, the problems are too great for parents to cope. We know from the Office of Population Censuses and Surveys that 5,500 severely handicapped children are in institutional care because their parents cannot cope with the severity of their handicaps.

It is totally wrong for such children to be living in institutions of that kind. They need the loving care of a family even more than ordinary children. During the debate, I shall refer briefly to the work of Peggy Jay and Exodus, which has campaigned for years for children to leave long-stay hospitals for the mentally handicapped. The figure has fallen from 4,000 many years ago to about 500 currently, but Peggy Jay is concerned that 12,000 children are still admitted annually for short stays in such hospitals.

When I met Peggy Jay yesterday, I noted some of the points that she made. She said that it was a long-standing problem. From the days of the Curtiss committee in 1946, when mentally handicapped children in residential long-stay mental hospitals were described as the most deprived group in the community, they have consistently been overlooked by successive Governments. In 1981, the then Secretary of State for Health and Social Security, my noble Friend Lord Jenkin, said that long-stay hospitals were no place for children. The present Government, says Peggy Jay, are to be congratulated on reducing the number to 500—but at 12,000, the number of short-stay admissions is far too high.

Until the Government decree that no child should be admitted to long-stay mental institutions, local authorities will continue to fail to provide proper alternatives for respite care, including properly developed fostering and adoption services. I may add that anyone who has visited the Sunflower ward at Brockhall knows how unsuitable those facilities are not only for the children but for adults who are there. I return to last Monday's meeting in Bolton. It is ironic that the problem should have reached crisis proportions in Bolton, because it pioneered the establishment of community care network homes. What has gone so wrong in Bolton? The Parents Handicapped Action Group voices the massive concerns of parents, and the national development team's report published in March 1987 included a lengthy catalogue of failures in Bolton, despite the spending of massive sums on network care homes. At one stage, £1·7 million was provided over three years for the largest pilot scheme in the country. I contend that the bureaucrats failed to identify and serve the real needs of the population.

I quote briefly from the team's report. Paragraph 9 says that joint groups
"have failed in their major objective … of service provision as a whole"
Paragraph 43 says:
"A network to be truly effective needs to offer a comprehensive locally-based service. Bolton Neighbourhood Network Scheme does not as yet offer such a service to clients with special needs … Unless access is obtained to additional resources, wide gaps in the service seem likely to remain."
Paragraph 93 says:
"All efforts should be made to extend the availability of short-term care for adults with mental handicaps. This should include those with special needs and profoundly handicapped people. There is clearly a great deal of unmet need in this respect within Bolton."
Paragraph 140 says:
"Adult residential provision is sadly lacking in quality and quantity and adult special needs provision requires considerable development in terms of day care, residential care and domiciliary support. It is understandable but inexcusable that the most needy individuals should be given the lowest priority in the development of community services."
Paragraph 144 says:
"Short-term care is desperately lacking, in particular for special needs adults."
Paragraph 145 says:
"A separate unit is urgently needed for this handful of individuals, staffed and equipped for this difficult task."
Paragraph 146 says:
"The neighbourhood networks offer an exciting variety of types of accommodation for adults but parents are adamant that there is a place for imaginative accommodation for larger groups which offer more protection and local social stimulation than that which is currently fashionable. Eager young administrators and care workers ignore parents' views at their peril on this matter. Current philosophies may fade as their shortcomings are revealed. We ask that any plan be judged in terms of the quality of life it promises rather than conforming to contemporary and possibly temporary theoretical notions."
That is the very point on which I should like my hon. Friend to question the North Western regional health authority most closely. I asked the North Western regional health authority to carry out a survey of unmet needs in all its areas. I was somewhat surprised to find that it received responses from only two thirds of the areas, but hopefully we will get responses from all of them. However, the responses received show that there is a high level of unmet need.

In a note dated 2 February, Bolton said:
"A major initiative is required if a service crisis is to be avoided … people with profound handicaps, and challenging behaviour … are finding that services are grossly inadequate … Suitably skilled staff must be recruited so that we do not end up with an army of community carers unable to provide the skilled input required."
Bolton community health council sent me a copy of a letter addressed to my hon. Friend the Minister in which the same problem is pointed out:
"there is a major shortfall of accommodation for people who have never been in long-stay hospital. It is estimated that a further 200 residential places are needed right now. … The day service in Bolton is full. … Often people with the greatest need seem to get the least."
What is to be done? The 1989 report by the Department of Health on needs and responses discussed the pros and cons of specialist units versus community placement and gives one of the disadvantages of a specialist unit as "staff burn-out". I have not shown that report to my wife, but I think that she will feel that that is not just a problem for specialists but one that is faced by all those who care for the severely disadvantaged groups that I am concentrating on in this debate.

There is no time to discuss the need for a centre of excellence in detail. The plan has been costed at £1 million a year. I do not know whether all that is totally necessary, but it shows the level that Bolton health authority is considering. I hope that my hon. Friend the Under-Secretary will question the North Western regional health authority about its rigid adherence to a model. I do not believe that any other regional health authority is insisting on such rigid adherence. I ask the Minister to press the regional health authority to look sympathetically at the need to fund a centre of excellence. When he considers the problem nationwide, I ask him to consider whether he can direct more resources towards the care of the profoundly mentally handicapped.

2.16 pm

I congratulate my hon. Friend the Member for Bolton, North-East (Mr. Thurnham) on his choice of subject for this debate, as it is one of substantial importance to a great many people, and to no one more than to him. I am not referring solely to those who suffer from a mental handicap. Equally important, the issue is of concern to parents, to relatives and to friends of people with mental handicap including those, like my hon. Friend, who have adopted mentally handicapped children.

My hon. Friend has raised an important issue about services in the north-west region. I will respond specifically to that issue in a moment, but I would like first to set out the national situation, as we see it, as the context for the regional issues that he raised.

Historically, the place for mentally handicapped people, particularly the severely handicapped, has been seen to be the hospital, under the care of consultants, and particularly of mental handicap nurses. Over recent years, however, it has become increasingly recognised that mentally handicapped people's needs are largely for what we now call social care—accommodation, social support, day services and assistance with using the general facilities of the community such as sports and leisure facilities.

Of course mentally handicapped people need health care, but much of that can be provided through the general services of the National Health Service and does not need to be provided specifically in mental handicap hospitals. Thus, over the past 20 years or more, we have seen a shift away from the residential placement of severely mentally handicapped people in hospital towards caring for them in a variety of community facilities. In parallel with that there has been growing recognition that the lead responsibility for services for people with a mental handicap lies with local authority social services departments rather than with district health authorities.

The Government's decisions on the Griffiths report, set out in our White Paper "Caring for People", emphasise the role of local authority social services departments in providing social care. As such, our proposals go "with the grain" of the way services for people with a mental handicap have been developing in recent years.

But the Government are far from believing that the introduction of the proposals in our White Paper and in the National Health Service and Community Care Bill will address all the issues of importance to people with a mental handicap. It is for that reason that my predecessor, now the Minister for Public Transport, my hon. Friend the Member for Kettering (Mr. Freeman), set in hand a linked series of initiatives which officials in the Department, in collaboration with people from health and social services and the voluntary sector, are currently taking forward. I should like to set those out, partly because this is my first opportunity as Minister to do so, to emphasise that I am keen that the work should go ahead.

First, we are having a look at the whole question of the residential needs of people with a mental handicap, particularly those with a severe handicap. On the one hand, there are people who take the view that the only form of acceptable provision is community-based living in ordinary houses with just three or four mentally handicapped people supported by professional staff. On the other hand, there are those who believe that the security, companionship and skilled nursing support available in mental handicap hospitals offers an important model that should not be allowed to wither away.

My officials have been engaging in a series of visits to a variety of types of residential service in Holland and in this country, and have just completed a series of three full-day seminars to explore the findings of those visits with a much wider range of interests concerned with such services. They have been looking at the underlying values of different sorts of residential service, the practical advantages and disadvantages and, necessarily, costs.

Secondly, in parallel with this review of residential care, the social services inspectorate has carried out a study of day services provided by local authority social services departments. Its report was published last year under the title "Individuals, Programmes and Plans". The Department is now exploring the findings of the series of inspections with a view to seeing what implications there are for current national policy and for the possible issue of guidance to social services authorities.

Thirdly, we are undertaking a fundamental rethink of the continuing role of the National Health Service in relation to people with a mental handicap. As I have already said, the role of the specialist mental handicap hospital in the range of services for people with a mental handicap seems to be in decline. There is certainly a growing recognition that many of the health needs of people with a mental handicap can be met through the ordinary services for people provided by the National Health Service, and that no segregated provision is necessary.

On the other hand, there is recognition that people with a mental handicap have some health problems that need specialist services, and there is concern that, as the move to community-based services develops, the necessary specialist health care will cease to be available. Earlier in the year, the Department established a working party of health and social service managers and professional staff to examine those issues. The working party has already met three times, and it is due to report before the summer holidays.

I now refer to the issue that my hon. Friend referred to as the greatest priority: how to provide services for people with a mental handicap who show severely disturbed behaviour—often called challenging behaviour. Last year, we issued a document called "Needs and Responses", which was a distillation of the best practices that the Department had been able to identify. This year, we aim to set up a series of workshops to explore the views about "Needs and Responses" of professionals and others concerned with providing services for this small but very important group. The workshops will aim to identify whether the Department should undertake any further initiatives in this matter. Again, I hope that those workshops will be held well before the end of the year.

My predecessor's aim in initiating the separate streams of activity was to focus on what he and the Department believed to be four key issues for the development of services for people with a mental handicap, given the general trend of the past 20 years towards community-based services. I cannot, of course, anticipate the outcome of those initiatives, but our hope is to have something substantial to say to health and social service authorities about the development of future services by around the turn of this year.

I have set out the national perspective in some detail because we are aware that some people believe that services for people with a mental handicap are being neglected relative, for example, to the services provided for people with a mental illness. It is certainly the case that, over the past year or two, the Government have had to respond to a range of problems arising from the implementation of the 1975 White Paper, "Better Services for the Mentally Ill" and this has led to the introduction of the care programme approach and the proposed mental illness specific, grant. Both are important advances in the provision for the mentally ill. We have certainly not been overlooking the needs of people with a mental handicap. On the contrary, as I have sought to show, we have initiated a major review of the key policy issues in the area, which I intend will give renewed impetus to the development of appropriate services for the mentally handicapped.

I would now like to turn specifically to the problems that my hon. Friend identified in relation to the services for the mentally handicapped in North Western regional health authority. I was pleased, on my first ministerial visit, to be able to go to my hon. Friend's constituency this Monday and to see for myself some of the services for the mentally handicapped provided in his city of Bolton. Regrettably, as time was short, I could not see as much as I should have liked. In particular, I wish that I had had time to visit some mentally handicaped people who had been resettled into ordinary homes in the Bolton area.

My hon. Friend referred specifically to the concerns of Exodus about the number of children with a mental handicap who are still in hospital. Many of them were admitted to hospital for conditions unconnected with their handicap and should be in hospital for no longer than necessary. Planned admissions for treatment, assessment, therapy or short-term care should normally lead to a special children's unit in or near the neighbouring community. There will often be a managerial part for the children's department of a mental handicap hospital.

I am sure that my hon. Friend will be pleased to hear that the issues related to the number of children in mental handicap hospitals will be part of the wider review of residential care, which was one of the four elements I described as being under way at present.

Will my hon. Friend consider visiting the Wessex region? In the past few weeks, respite care has been highlighted, because the local health authority has contemplated making cuts in the number of houses available for mentally handicapped people. The problem is that people who use respite care are often on the edge of viability for looking after severely mentally handicapped people and only the fact that respite care is available enables them to continue. I ask my hon. Friend to visit the Wessex region soon and to see the position of respite care in the Wansdyke area.

I will look at the position of respite care in Wansdyke, to which my hon. Friend referred, and I will write to him specifically on that issue. I look forward to the opportunity, which I am sure will occur sooner rather than later, to travel to my hon. Friend's part of the world.

When I was in Bolton this week, I was interested to hear different views expressed by the various groups in the area on a range of subjects. It is clear that there is a fund of good will to succeed with resettlement and community services such as therapy and respite care. However, I detected a certain frustration, to which my hon. Friend the Member for Bolton, North-East referred, that the regional health authority appears to be rigid in its interpretation of care in the community and that this is having two effects. First, it is preventing a full range of residential arrangements from being developed; secondly, in directing funds exclusively to the arrangements pioneered by the Bolton neighbourhood network scheme, it is likely to slow down the rate of resettlement out of the hospitals. This arises because that scheme puts a premium upon community support services which are extremely demanding of professional staff time. These are, of course., potentially serious disadvantages, if they are justified. because they stem directly from an explicit agreed policy of the regional health and social services departments.

We are not yet ready to give further guidance on the range of residential care to suit all degrees of mental handicap, because that is part of the process of the policy study, but in view of the feelings I heard expressed in Bolton this week, which my hon. Friend repeated, I shall ask the regional chairman of North Western region to see whether the time has come to begin discussions with all interested parties to see whether a less rigid approach to resettlement funds is required. It may be that the rigidity is seen by some simply because a particular scheme has not succeeded in the past, but the best way to clarify the matter is to ask the regional health authority chairman to pursue it, and I intend to do that. I hope that my hon. Friend will feel that I have responded at least in part to his concerns on that issue.

Finally, I thank my hon. Friend for his hospitality when I visited Bolton earlier this week. I frankly acknowledge that there are some worries about current provisions and that these issues will need to be addressed as our current initiatives in this field are fully developed. In the meantime, I hope that my hon. Friend will welcome my proposal to ask North Western region to consider whether it should be more flexible in the future than it has been in the past.