HC Deb 26 May 1978 vol 950 cc1992-2002

3.15 p.m.

Sir George Young (Ealing, Acton)

I welcome the opportunity to raise briefly the problem of children in long-stay hospitals. It is a sad story of society locking away children already imprisoned by their own handicaps. It involves handicapped children denied contact with normal happy children—handicapped children living in hospitals, neglected by the Health Service, and cared for by nurses abandoned by their colleagues in the medical profession. It is a story of a small number of children who, more than other children, need affection, attention, care and stability but who are denied exactly that by being placed in impersonal, under-financed and remote institutions misleadingly called "hospitals".

Many of these children are not in need of medical or nursing care. They are in hospital for totally different reasons, namely, because there is no residential accommodation in the community, because the family simply cannot cope and has abandoned them because the parents have been made homeless.

The plight of these children has been graphically described in a book by Maureen Oswin, published last month, entitled "Children living in long-stay hospitals". A teacher for 14 years in a cerebral palsy unit in a long-stay hospital, she then spent 18 months in the children's ward of eight long-stay mental handicap wards to prepare the material for her book. I draw on that book to show what is going wrong.

Maureen Oswin says, in her book: In rive of the eight hospitals, some of the children were suffering from what can only be described as the poverty conditions of the 19th century, i.e., chronic catarrh, runny ears, sore eyes, skin diseases, chronic recurring stomach upsets, bad teeth and worms. Some of these disorders might be ascribed to the fact that large numbers of children were living together in somewhat unhygienic conditions (e.g. sharing washing water, flannels and towels)…". In Dickensian London one might have understood this in the poorer homes, but not in twentieth century NHS hospitals.

What comes out very clearly from the book is that the specialist services which ought to be available to handicapped children in hospitals are simply not being offered. Only 75 of the 223 physically disabled children in the study received physiotherapy. The rest received no physiotherapy either because there was not a physiotherapist employed in the hospital or because, if there was, he did not believe in extending physiotherapy to severely handicapped children.

Although speech therapists worked in some of the hospitals, not one of the 223 multiply handicapped children received any speech therapy whatever. Although there were the equivalent of 10½ occupational therapists working in the eight hospitals, only one had offered to advise the special care war staff about their children.

Maureen Oswin has this to say about the subject: Sixty-six of the 223 children in the study were unable to grasp objects because their hands were so affected by their handicaps and allied deformities. The other 157 children had some grasp ability, but only 11 of these could dress or wash themselves, and only 53 could feed themselves. One wonders if these figures of achievement might have been higher if the 157 children with some grasp ability had received the professional skills of an occupational therapist". On social workers, the author is even more critical. She says: None of the social workers in the study took any interest in the life-style of the children in the special-care wards…This total lack of involvement in the life-style of long-stay hospital children is a common failing of social workers throughout the country, and does not only apply to those met in this study…Social workers seem not to recognise the deprivation suffered by children in long-slay hospitals, and their failure to expect the same standards of child care in hospitals as they would expect for a child in residential care in the community serves to perpetuate the division. The study shows that the hospitals did not have enough wheelchairs for non-ambulant children and that there was a lack of suitable furniture and aids.

The study further shows that the children attending hospital schools are way below the standard which I am sure the Minister or I would like to see. The Warnock Committee's report, which was published on Tuesday, shows the lack of understanding that exists between the teachers in the special day schools and the nurses. As a result the children become pawns in demarcation disputes between the two professions. I urge the Minister to organise an early debate on that very important report produced by the Warnock Committee.

What is particularly worrying is the number of children who, despite the 1970 Education (Handicapped Children) Act which stipulated that all severely mentally handicapped children should have the benefit of local authority special education services, are excluded from the schools. The school at one hospital in Miss Oswin's study admitted only two out of 20 children to school full-time. Between them, these children were legally entitled to receive a total of 500 hours' education per week, whereas the total amounted to only 102 hours. Moreover, the shortage of ward staff and general lack of guidance about play meant that those children who did not attend school sat around in the ward doing nothing.

Another major problem, which I touch on only briefly, is the shortage of staff in the wards and the lack of training which too many receive. The impression of overwork is well illustrated by one section of the book. In 92 out of 102 day shifts, four or fewer nurses were on duty in one ward, which contained 27 children, of whom five were blind, 24 were incontinent and non-ambulant, and 19 needed to be fed.

With so few staff, the work of caring inevitably became merely a matter of moving from one routine task to another—washing, changing, feeding—with brief coffee breaks in between. In these circumstances, it was plainly impossible to satisfy the children's mothering needs. One is bound to say that one is full of admiration for what these nurses do in very difficult conditions.

The problem would to same extent be alleviated if the children played with one another, but some wards have unfortunately made this impossible, the children being anchored all day in wheelchairs, bean-bags or small chairs, and therefore denied the opportunity of social interaction. Even though a child is separated from its mother, it can still find a happy and confident place in its environment if it is given adequate play opportunities and encouragement. Regrettably, however, the study showed that, over one weekend in one ward, 20 children received, on average, one minute 15 seconds of mothering care from the staff.

From this inevitably brief survey of conditions in long-stay wards, one general conclusion emerges. There is no advantage in transferring a mentally handicapped child from a home where his parents cannot cope and putting him in a hospital where the nurses cannot cope. If a child has to leave the home and the parents whom he knows and loves, which in itself is a trauma for a normal child, let alone a handicapped one with less self-confidence and a weaker understanding of his environment, in the name of humanity one should put him into as friendly, warm, secure and stable an environment as possible. One should not move him into an impersonal exposed institutionalised special care ward where the one thing that he will not get is special care.

In support of that general conclusion, I quote a paragraph from the report of the Court Committee, "Fit for the Future": It is generally agreed that there is no medical or nursing reason why half of the children at present in long-stay care in mental subnormality hospitals should have been admitted in the first place.' That is underlined by the 1971 White Paper, "Better Services for the Mentally Handicapped", which recommended that services should be made available in the community. I quote briefly again from the Court Report on that situation: it seems to us from visits we have made and the well documented evidence we have received that the variable progress in meeting the special needs of children in hospital has been least satisfactory in this area. We have seen for ourselves how hollow the lives of these children can be. Early to bed, and early to rise, with few toys and little education and nothing to do at weekends, their quality of life and standards of care are all too often subordinate to regimes and staffing dictated by the organisation of a large institution. The conclusion is underlined by the Warnock Report.

From that comes the second conclusion—the need to bridge the yawning gap between the mentally handicapped child at home, where his emotional development may be best encouraged but where the physical problems of looking after him are too great, and the long-stay wards, where the physical problems are efficiently solved but at a desperately high price in terms of emotional deprivation. We must develop and encourage some half-way houses where a balance can be struck between the two.

These children need small homes, not large hospitals. They need permanent friends, not transient doctors. We must therefore shift resources back into the community to provide more support, more domiciliary help—so that parents have a better chance of coping at home—more day-care facilities, where the stress of looking after them can be shared with others, residential places where the child can be left for a day or two while the parents have a holiday, and above all, homes that provide a domestic environment where a child may find conditions similar to his own home but with the qualified care and supervision that he might get in a hospital.

If we could do that, I would join the Minister in appealing to parents not to abandon children in the community but to try to fight the battle together with the services which his Department can provide.

I invite the Minister to explain why there has been such a delay in moving towards this solution of bridging the gap between home and hospital. Maureen Oswin has some very disturbing remarks on this: None of the eight local authorities in this study offered residential places for children with severe multiple handicaps; they all recommended long-stay hospital admission…Only one local authority had plans to provide residential accommodation for non-ambulant multiple handicapped children". The third brief conclusion is that a large number of these children will have to stay in these units. But we can try to improve conditions for them. A recent report by the Tavistock Institute, called "The Psychological Welfare of Young Children Making Long Stays in Hospital" identifies improvements that can be made at small cost to provide a more human environment in the hospital by breaking up the wards into smaller units, by making visiting facilities for relatives easier, and by improving the status of the nursery nurses.

I wish that one-tenth of the energy that the Minister and his colleagues have spent on phasing out pay beds had been spent instead on phasing these wards out of long-stay hospitals.

I think that much more can be done on prevention, to ensure that more of these mentally-handicapped children are not born. France is spending much more of her resources and gives much greater priority to sponsoring relevant research. I believe that over half these mentally handicapped children would not have been born if better preventive medicine had been available.

I know that the Under-Secretary of State has a deep personal commitment, but he does have some questions to answer. These are, in a sense, his children, living in hospitals that he runs and looked after by staff that he employs. Unlike other children, their future is not in their own hands; it is in his. They are entitled to a much better service than the evidence that I have shows they are getting.

3.26 p.m.

The Under-Secretary of State for Health and Social Security (Mr. Alfred Morris)

I am most grateful to the hon. Member for Acton (Sir G. Young) for raising this important subject for debate. I know it to be one in which he has both a genuine and deep concern. With him, I want to see all disabled children receive the very best possible care. He will know of my view that children with very special needs deserve positive discrimination in their favour.

The majority of children in long-stay hospitals are mentally handicapped and, as the hon. Member has done, I shall concentrate on the needs of these children. They are needs that were vividly described in Maureen Oswin's recent study. I have known and respected Maureen Oswin for many years. Her criticisms of the inadequacies and, in some cases, of the sheer deprivation she found are a sharp reminder of what still remains to be done.

There is one point that I know Maureen Oswin and all who work in this important field would want me to make clear from the outset. It is that, although the vast majority of children in long-stay hospitals are mentally handicapped, the vast majority of mentally handicapped children are not in hospital. Over 80 per cent. of mentally handicapped children live with their parents. Others live in the community in residential accommodation provided by local authorities.

The voluntary organisations also play an important part, both in the provision of residential accommodation and in offering support to parents. I must mention in particular the work of the National Society for Mentally Handicapped Children. The Spastics Society also does fine work, and indeed provided funds for Maureen's study. Other mentally handicapped children live with foster parents.

Fostering of mentally handicapped children is a relatively new development and not without its difficulties. I am sure, however, that if it can be made to work successfully it can be of great benefit to the child. I am very much aware of the valuable and pioneering work being done in this area by Dr. Barnardo's, and also in Leeds and Somerset by the local authorities. The Government have been glad to play their part in assisting the development of foster care. As the House knows, following amending legislation which came into effect on 29th August 1977, the attendance allowance can now be paid to children aged 2 years and over who qualify and are boarded out with foster parents by a local authority.

This afternoon, however, our principal concern is with that small minority of mentally handicapped children who are in hospital. There are about 4,500 of them. They are mostly children who are very severely mentally handicapped. They often also have severe physical handicaps or severely disturbed behaviour. A few of them may even appear almost completely unresponsive to the world around them. These children are some of the most vulnerable members of our society, and our duty towards them is correspondingly great.

Let me make my own position very clear. I regard services for these children as far from satisfactory, so I am at one with the hon. Gentleman in seeking further change.

Even the present unsatisfactory position is an improvement on what existed before. The progress there has been is due to the work of successive Ministers and to the advice given to authorities by my Department over the years. I and my colleagues have consistently stressed our concern to improve services for long-stay hospital children. We have given strong guidance and advice which covers many of the points of concern raised by the hon. Member.

Moreover, we are now taking further action to reduce the number of children in hospital. The position in this regard is already far more satisfactory than in the past. The White Paper "Better Services for the Mentally Handicapped", issued in 1971, still represents the basis of our mental handicap policy. This estimated that we would need about 6,300 hospital places for mentally handicapped children under 16 by 1991. As I have shown, at 4,500 the number of such children now in hospital is already 1,800 below that figure. Therefore, we are much ahead of the White Paper's target for 1991. Furthermore, numbers are continuing to fall. As my right hon. Friend the Secretary of State has said, however, many children are still being admitted to hospitals for the mentally handicapped whose needs could better be met in the community if there were adequate provision available there.

We now intend, therefore, to ask health and local authorities jointly to review the needs of mentally handicapped children in hospital with a view to seeing how they can best be met. I know the hon. Member will be pleased to know that we shall also ask them jointly to fix dates after which no mentally handicapped child from their area will be inappropriately admitted to long-term hospital care. By this I mean that no child will be admitted unless he or she does in fact require hospital care. That is what matters most deeply.

In my view, this is not an enormous task. The overall speed with which it can be carried out nationally depends, of course, on the speed with which local authorities can provide the services which are necessary if no child is to be inappropriately admitted to hospital. We realise that authorities have been facing severe economic restraints, but we have stressed again, in the planning guidelines issued this March, the priority they should place on residential accommodation for mentally handicapped children. We shall be watching carefully to see that some authorities do not lag unnecessarily behind others in making the necessary provision. Health authorities will also need to plan for improved supportive services to families.

The hon. Member asked me when the promised guidance will be issued. I cannot give him a definite date as of today. For one thing it is the usual practice, as the hon. Member may know, for field authorities to be consulted, through their associations, on the terms of guidance before it is issued. I can tell the hon. Member, however, that the draft circular is at an advanced stage of preparation within the Department, and also assure him that there will be no unnecessary delay.

We are also putting our money where our precepts are. By this I mean that, as well as issuing guidance, we have made money available to local authorities through joint financing for selected projects which are in the interests both of the National Health Service and the local authority. The amount of money available under joint financing has increased from £8 million in 1976–77 to £21 million in 1977–78. I expect it to reach at least £40 million by 1981–82. This has been an entirely new development, which will contribute significantly to the development of better services. I know that services for the mentally handicapped have already benefited substantially from the availability of these funds.

Our efforts to reduce the number of children in hospital, and thus shift the balance of care for mentally handicapped children away from long-stay hospitals and into the community—a principle already announced in the 1971 White Paper—are one aspect of our attempt to deal with the problems we are discussing. There are people who want the Government to go beyond the policy set out in the White Paper, not just in the sense of saying that the White Paper got the numbers wrong, but by setting a date nationally, after which no mentally handicapped children will be receiving long-term care in hospital. In his letter to The Times on 12th April, my right hon. Friend the Secretary of State made clear his view that there will be a small number of very severely handicapped children who will continue to need the specialist services available only in hospital. I must emphasise that he was talking about a very small number. As I have said, we are committed to putting an end to the admission of every child who can be properly cared for outside hospital. I hope that the review of children in hospital which we are asking authorities to carry out will throw more light on the actual numbers involved.

Time is very much against me. I am deeply conscious that it will not now be possible to answer all the points made by the hon. Gentleman. I hope he will agree that in my reply I have been seeking to approach the matter with a sense of urgency. There is much more that should be said in answer to the very important points that he has made. I can assure him that the points he put forward will be carefully and sympathetically considered. I trust I have shown that our concern in the past to try to improve matters has resulted in tangible improvements upon which we can now build further.

I hope that I have made it clear, too, that we shall not be content until every child for whose care we have some responsibility receives the services to which he or she is entitled. That means more than just meeting the child's special needs. It means providing an environment in which he is able to develop emotionally and socially, as children outside hospital can, and in which he is not deprived of mothering care nor of the opportunities to play and learn. In other words, it means providing an environment in which he can live and develop as a human being.