Profoundly Mentally Handicapped (Scotland)

– in the House of Commons at 4:22 pm on 3rd March 1988.

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Motion made, and Question proposed, That this House do now adjourn. —[Mr. Maclean.]
10.1 pm

Photo of Mr Jimmy Dunnachie Mr Jimmy Dunnachie , Glasgow Pollok

Thank you, Mr. Speaker, for allowing me the opportunity to address the House in an Adjournment debate.

I wish to draw the Government's attention to the plight of Scotland's profoundly mentally handicapped, and to the provisions made by local authorities, health boards and voluntary organisations in providing care for that group and respite care for their families.

I should like to begin by defining, as best as I can, what it means to be profoundly mentally handicapped, to outline the problems in caring for that group and, finally, to suggest ways to improve facilities for this most deserving, and all too often forgotten, section of society.

Profoundly mentally handicapped people are very severely disabled, usually as a result of a congenital handicap, brain damage at birth or impaired development before birth. They have poor co-ordination and are often immobile, cannot feed, wash, dress or toilet themselves, are often incontinent, sometimes doubly incontinent, frequently have severe loss of hearing or sight, and do not have full powers of speech. In some cases they suffer acute epilepsy, taking multiple fits in rapid succession.

Profoundly mentally handicapped people therefore need constant round-the-clock care and attention to fulfil their most basic needs. They are totally dependent on those who look after them. That total dependency must never be forgotten. The degree of care that they need makes them different from other handicapped groups in society. There are roughly 5,000 people in Scotland in that category. A cause of great concern is that accurate figures cannot be obtained, which makes it difficult to plan community care programmes.

How then are the profoundly mentally handicapped cared for at the moment? Most of them are cared for at home where, in their natural environment, they are given all the tender, loving care that their parents so selflessly offer. It is generally agreed by parents, carers, the medical profession and, indeed, the Government, that the best care for this group is given when they are living at home in their neighbourhood communities.

But the parents of profoundly mentally handicapped people need support to help them to fulfil the task which, after all, demands all the time, energy and love that they can give. They also need a sign to reassure them that their children can exist and be happy without them in another environment which will also give them love and care.

Recent years have seen an increase in respite care facilities and in the provision of support services which are so vital in allowing parents to renew the great resources of strength that their everyday routine demands. Indeed, such back-up services have proved to be a godsend to such families, offering them the lifeline that they so desperately seek.

I have witnessed the excellent work done in the area of respite care because one such project, Mitre house, is in my constituency of Glasgow, Pollok. Such facilities give parents a breathing space in which to enjoy such luxuries as taking a holiday, going to a wedding, taking their other children out for the day or attending hospital, all in the knowledge that their profoundly mentally handicapped children are safe and happy.

I have also seen the great benefits that day care facilities can bring to profoundly mentally handicapped people and their families. It is to the credit of Strathclyde regional council that it has increased the number of day care places from zero in 1976 to 200 last year. I have also seen the increase in independence, albeit it in a limited way, that creating specific places for the profoundly mentally handicapped in Strathclyde's adult training centres, such as the one in Priesthill in my constituency, can bring to this group and the accompanying relief that it gives to their families.

But those services, admirable as they are, only tinker with the problem because they are not wide enough to resolve it. The demand for services is far greater than their supply. That is in no way a criticism of the local authorities, health boards or voluntary organisations, because they all do a magnificent job within the limits of their resources. It is rather a plea for additional resources to be given to them to allow them to continue and expand their work.

There are still too many profoundly mentally handicapped people in institutions. Department of Health and Social Security allowances and day care facilities are insufficient and there are not enough community-based back-up services.

The various sectors have combined in recent years to overcome many of those problems. A typical example is the co-operation that exists between regional councils and the voluntary sector in providing residential accommodation in small locally based units. But such co-operation needs funding. Financial support must be given to provide the necessary day care facilities and to top up DHSS allowances.

The health boards are finding it difficult to cope with the demand for community-based specialist services such as speech therapy and physiotherapy. That is due to the general underfunding of the National Health Service, but it is a particularly tragic result since those services are so vital to the needs of the profoundly mentally handicapped and their families.

The Scottish Office statement of January 1987 acknowledged the need for additional local government resources, but it made no commitment to increase resources specifically for the profoundly mentally handicapped. Rather, the Government are waiting until they see the outcome of the Griffiths report for England and Wales.

Scotland's profoundly mentally handicapped cannot wait. Their plight is urgent and desperate. It is the plight of people who cannot speak for themselves. Therefore, it is our duty to plead on their behalf. With the urgency and desperation of that plea in mind, I would consequently ask the House to consider the following proposals.

First, I ask the Government to review their method of collecting information relating to the definition of being profoundly mentally handicapped. That would allow more accurate figures to be obtained, and, as a result, would allow the caring agencies to plan their community care programmes more accurately.

Secondly, I ask for the immediate release of money to local authorities to help them provide care for this group and respite care for their families. I further ask that the health board be given enough funds to allow it to meet the demands for community-based specialist services.

Thirdly, I hope that the Government will seriously consider the suggestion of Strathclyde regional council that the pitifully small DHSS residential care allowances be augmented with special rates for the profoundly mentally handicapped. Alternatively, if the Government decide to pass the full financial cost to local authorities, I ask that assurances be given that those authorities will receive the necessary funding to allow them to meet the needs of the profoundly mentally handicapped.

The way forward lies in the continued co-operation that already exists among the sectors that care for the profoundly mentally handicapped. I have already testified to the good work being clone by three sectors in Strathclyde. It is echoed by similar provision being made by local authorities, health boards and voluntary organisations in other parts of Scotland. All these agencies need money to maintain existing services and to develop the new programmes of care that are so desperately needed.

I have already said that the profoundly mentally handicapped cannot speak for themselves. They do not form a powerful pressure group in today's rush-hour society, but their needs are constant, urgent and basic. Their silence is a plea for human understanding and dignity. It is a silence that compels us as a caring, Christian society to listen, to act and to give them the best that we have to offer. So I ask the House to hear the pleas of the profoundly mentally handicapped and I ask the Government to release sufficient funds to allow the continuation and expansion of the services that are so vital to the needs of these people and their families.

10.12 pm

Photo of Mr Michael Forsyth Mr Michael Forsyth , Stirling

I am grateful to the hon. Member for Glasgow, Pollok (Mr. Dunnachie) for raising what is clearly a most important subject. His considerable experience in local government in Strathclyde before entering this House has clearly stood him in good stead in pursuing this matter with such vigour and obvious conviction, and I congratulate him on securing this debate and on his contribution to it.

It is difficult to be precise about the numbers of people who suffer from mental handicap. At one extreme, the handicap may be so slight as to be almost undetectable to others in daily living; at the other extreme there are those who are profoundly mentally handicapped—the group which we are talking about tonight.

It is a cruel fact that people with such handicaps have severe problems, which include difficulty in communicating their wishes and feelings to those who would like to help them. For that reason, they have to rely on other people to act on their behalf, to protect their rights and promote their welfare. The hon. Gentleman makes a plea on their behalf for human dignity and understanding. I am sure no one would dissent from that and I can assure him and this House that, as a Government, we are very much alive to the needs of this group. I hope that I can make that clear tonight.

On the health side, services for the mentally handicapped were of course identified in " Scottish Health Authorities Priorities for the Eighties" as being in the highest category of priority for the provision of services, and we have made clear to health boards and local authorities the emphasis that the Government wish to be placed on that priority group. It is only right that we should all do what we can to redress the balance in favour of handicapped people, and I have listened carefully to the hon. Gentleman's plea for additional funds.

We have backed up our commitment with real increases in the money available. Since 1979, gross expenditure on the NHS in Scotland has grown by about 28 per cent. in real terms. In 1979, it was £1,053 million. This year it is estimated to be £2,334 million, an increase of more than 120 per cent. in cash terms. It is a similar story for local authority expenditure on social work services, and I shall turn to that later. The profoundly mentally handicapped are receiving benefits from these increases. The hon. Gentleman has acknowledged this, but, if I may say so, in a rather negative way.

Some profoundly mentally handicapped people have particular medical problems which require that they are cared for in specialist mental handicap or general hospitals for most of the time. Others live in residential schools that specialise in education appropriate to their needs. Many profoundly mentally handicapped people live at home all their lives and are cared for by their parents with help from a number of statutory and voluntary agencies.

The hon. Gentleman laid great stress on respite care, and was right to do so. I am pleased that hospitals have also increasingly been providing respite care. Such facilities are now available in most mental handicap hospitals, as well as psychiatric and geriatric hospitals and units, and in units for the younger physically handicapped and in a number of general hospitals. This recognises that it is of the utmost importance that relatives and other carers get a break from the burdens of constant care. Profoundly mentally handicapped people living at home will be supported by the primary care health services and community mental handicap nurses.

We have long recognised a need to move towards less reliance on the long-stay institutions and the evidence is that, even for those with the most severe form of handicap, less and less is hospital seen as the best solution. The numbers of mentally handicapped people in hospital have been decreasing steadily in recent years, from 6,678 in 1979 to 5,459 in 1986. That most welcome trend is due to considerable work in the hospitals to assess, train and discharge patients and to the provision of community facilities both for former patients and for those who, not so long ago, might have been admitted to hospital. The joint planning and support finance arrangements are also making a significant contribution in the controlled move towards greater community care. However, it is important to stress that community care is not the panacea for all ills. Great care is needed to avoid discharging people from hospital before proper facilities are available for them in the community.

For some, the specialist facilities of hospital will remain the most appropriate form of care and we accept that conditions in hospitals must be improved. We have committed substantial sums to achieve that in recent years. For example, at Lennox Castle two new 12-bed intensive care wards, when fully commissioned within the next few months, will allow for the provision of care and treatment on a concentrated basis for groups of mentally handicapped people including those with profound mental handicap. Since 1979, we have provided in excess of 2,000 new and replacement mental handicap and mental illness beds, at a cost of over £60 million.

Nowhere is that provision more evident than in two of Scotland's largest mental handicap hospitals. At Lennox Castle, against a falling patient population, the Greater Glasgow health board last year opened four new 30-bed wards to replace unsatisfactory accommodation, at a cost of £2.5 million with a 20 per cent. increase in nursing staff. At the Royal Scottish national hospital over the past two years, the Government have provided the Forth Valley health board with capital resources of £2 million to carry out significant improvements in the fabric of the buildings, once more against the background of a falling patient population. Around 300 of the population live in new or upgraded accommodation, providing higher amenities and more privacy. Further improvements are under way. The health board has been successful in recruiting around 140 nurses—an increase of 25 per cent. and there have been a number of other staffing improvements at the hospital. The Mental Welfare Commission for Scotland, which had been critical of conditions at both these hospitals, has now publicly acknowledged the improvements which have been made.

The improving levels of care and services which profoundly mentally handicapped people are receiving in hospital or otherwise under the NHS are only part of the story. Happily, many handicapped people are able to remain in the familiar surroundings of their own homes. The hon. Gentleman has paid tribute to those carers and I too have the greatest admiration for the dedication of families and other carers in looking after seriously handicapped people.

In looking at the care of the mentally handicapped in the community, perhaps I could turn first to education. Though not mentioned in detail by the hon. Gentleman it has long been recognised that even profoundly mentally handicapped children are capable of benefiting from education.

It is clearly important that special needs should be discovered and addressed as early in the child's life as possible. Education authorities may therefore start making appropriate provision for a handicapped child, even when he or she is below school age. A contribution in helping to identify such children whose difficulties may not always be immediately apparent will commonly be made by doctors, health visitors and social workers. That is typical of the co-operative and collaborative effort that is encompassed throughout community care.

There were, at the last count, 1,070 profoundly intellectually impaired children or young persons at school, of whom 808 attend special schools. That represents just over 10 per cent. of those children recorded as having special educational needs. The money provided for special education needs in 1987–88 amounted to £59.5 million. Next year it will be increased substantially, by some 18.5 per cent., to £70 million.

While many parents of profoundly mentally handicapped children may wish to have their children living with them at home once they leave school, there will be some for whom that will not be possible. In the past, admission to hospital has been the only available choice in most cases, but the position has changed in recent years as the "Balance of Care" study published a year ago shows.

The move towards care in the community is being brought about in a number of different ways. Local authorities themselves are devoting a larger proportion of their budgets to services for the mentally handicapped—5.5 per cent. in 1979–80 as against 7.8 per cent. in 1986–87 — but the budgets themselves are larger, as overall resources which we have made available have grown substantially in the past eight years. The planning figure for social work current expenditure in 1988–89 is 36 per cent. greater in real terms than in 1979–80 and 5.5 per cent. above authorities' own budgets for social work services in 1987–88.

Although there has been a substantial move away from the provision of fully staffed residential accommodation for those who are mildly or moderately mentally handicapped, some residential facilities are still being developed on a more traditional model. Those are undoubtedly serving a purpose for more severely mentally handicapped persons by allowing them to sustain their lives in the community in an environment which is fully supportive of their needs.

However, it is in the expanding field of day care that significant strides are being made in the development of community services for the care of mentally handicapped people. Day care, as well as allowing some respite, can provide much- needed scope for mentally handicapped people to develop skills and gain a sense of achievement in a variety of activities. In 1986, local authorities provided 6,542 day care places as against 4,387 in 1979, an increase of some 50 per cent. The voluntary sector also makes a valuable contribution as the hon. Gentleman said, providing a further 450 places.

Local authorities have increased the amount of residential provision for mentally handicapped persons which they make at their own hand, from 594 places in March 1979 to 865 places in 1986. There has also been a marked increase in the amount of accommodation provided by the voluntary sector. The number of places in voluntary establishments registered by the local authority has increased from 493 to 712 in the same period, but the range of accommodation which can meet needs extends to group homes and a variety of supported accommodation, including many schemes provided by housing associations. Together they make a sizeable contribution to housing in the community for the handicapped with over 460 units as at December 1987.

Photo of Mr Brian Wilson Mr Brian Wilson , Cunninghame North

If the Minister is so concerned—I am sure he is—about the care of the mentally handicapped, can he tell us why he and his colleagues insist that the mentally handicapped should pay the poll tax? Does he not think that it runs contrary to the philosophy he is espousing? It has been confirmed in written answers to me that as soon as the mentally handicapped are released into care in the community they will be liable for the poll tax. How on earth can that be justified? Will it not be a severe deterrent to people who are trying to rehabilitate the mentally handicapped in the community to find that they will be hammered by the poll tax on top of everything else?

Photo of Mr Michael Forsyth Mr Michael Forsyth , Stirling

I regret having given way to the hon. Gentleman. He will know that the proposed community charge is subject to a rebate scheme. He will also know that the severely mentally handicapped are exempt from the community charge. It is another example of the hon. Gentleman's attacks on the community charge, which seem to be based on a lack of information about what we propose.

Photo of Mr Michael Forsyth Mr Michael Forsyth , Stirling

I will not give way to the hon. Gentleman again.

Not all the schemes to which I referred are designed to cater for the profoundly mentally handicapped, and there is still a need for additional residential accommodation. In that connection, I welcome the opening recently of a number of voluntary sector establishments. For example, the Fred Martin project for multiple and profoundly handicapped people is an inter-agency venture run by Barnardo's which has enabled some 16 people to be removed from hospital and accommodated in ordinary domestic-sized premises. Another, run by the Scottish Society for Autistic Children, is Balmyre house in Alloa — a residential hostel providing 24 places for young adults suffering from autism.

I very much agree with the positive things that have been said by the hon. Member for Pollock tonight about respite care. It is an area of growing interest in social work, not just for the mentally handicapped but for the whole range of clients whose care is provided in their own homes or elsewhere in the community. The role of residential accommodation in meeting respite care needs is recognised and the voluntary sector has a major role, as witnessed by such organisations as Crossroads, in the care of the physically handicapped.

While the main funding responsibility for local social work services rests with local authorities, developments in respite care have been made possible in some cases such as Mitre house run by the archdiocese of Glasgow to which the hon. Member for Pollock referred, with financial support from the Government through the urban programme.

Other bodies have been helped through a special programme of grants recently provided by us. Of the various projects which received grant aid for three years through the care in the community initiative commenced in 1985, four were for the mentally handicapped. Over the three years, the projects will have received some £165,000. In practical terms they have brought short-term respite care to 15 families in Dunfermline; helped extend day care in Skye; provided the opportunity for mentally handicapped people in Glasgow to live away from their families for short periods; and helped a number of people in Edinburgh into supported accommodation.

I should also mention the action taken within the past few weeks to help another five projects get under way by offering capital grants totalling about £150,000. Much of this relates to the cost of converting and fitting out accommodation. Some of the projects will provide residential accommodation in the community, and others—the hon. Gentleman will be delighted to hear this—will provide respite care facilities.

We have had an interesting and, I hope, useful debate this evening on this important area of the National Health Service and local authority activity. We have heard also of provision outwith these areas by families and the voluntary sector. It is to the hon. Gentleman's credit that he has chosen to highlight the needs of these disadvantaged people and their carers. In my response, while I was, perhaps, not able entirely to satisfy the hon.

Gentleman's questions, I hope that I have demonstrated that care and services for the profoundly mentally handicapped are generally being provided at an appropriate level, and that where improvements can be made these are being addressed. I have noted the hon. Gentleman's view that planning would be facilitated by better statistical information. There are difficulties, but I shall certainly look at this matter to see whether any improvements might be practicable and I am grateful to him for making the suggestion.

I have also noted the hon. Gentleman's reference to difficulties with regard to provision of speech therapists and physiotherapists. As recently as 22 February I met COSLA to discuss this very matter, and I agreed at that meeting to take up the matter with health board chairmen. I shall be doing so when I meet them on 18 March. Perhaps I could mention that in the NHS we have managed to increase the numbers of speech therapists by 32 per cent., and physiotherapists by 28 per cent. since 1979.

We continue to pursue the move from hospital care to community care, where proper facilities are available. To those who say, "Do more," I point to the considerable improvements that have already been made, and to the substantial increases in funding that we have given to the NHS and to local authorities so that services can be maintained and further improved for this important group of people and their carers.

Photo of Mr Jimmy Dunnachie Mr Jimmy Dunnachie , Glasgow Pollok

May I thank the Minister for his reply to me, but say that he leaves me somewhat baffled. The group that I am talking about are the Cinderellas, those with mental illness. They have little or no help. I am surprised when you tell me this, as I know for a fact that when we talk about—

The motion having been made after Ten o'clock and the debate having continued for half an hour, MR. SPEAKER adjourned the House without Question put, pursuant to the Standing Order.

Adjourned at twenty-nine minutes to Eleven o'clock.