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Miss Sarah Dixon

Volume 951: debated on Friday 9 June 1978

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

3.47 p.m.

I am grateful for what is the second opportunity in 23 years as an Essex Member of raising on the Adjournment the plight of a constituent. In so doing, I declare my interest as the father of an autistic child in the care of the National Health Service. It happens that my daughter shares the same christian name as Sarah Dixon, the multiply-handicapped girl who is the subject of my Adjournment motion. Moreover, my wife and I have experienced some of the difficulties encountered by the parents of Sarah Dixon, of Stewards Green, Epping. We, too, have had to balance the needs of a handicapped child with the needs of the rest of the family.

Sarah Dixon is now getting on for eight. She was one of twins. The other was stillborn. Sarah was born with brain damage which was not immediately diagnosed but required an operation at Great Ormond Street before she was three. Sarah is spastic, mentally retarded and registered as blind. She has the size and strength of a normal seven-year old and is difficult to carry and exercise. Everything has to be done for her.

The House may imagine the burden upon her mother and family. I should like to salute their patient and heroic devotion and to pay tribute to the physiotherapists, occupational therapists, speech therapists, teachers and others who have striven on Sarah's behalf in conjunction with her parents.

In a restrained and sensible letter to me dated 14th March, Mrs. Dixon writes:
"Although one feels one should be accustomed to this after 73- years, I find we all get very much on edge, possibly because as a family we have to be on duty 24 hours out of 24, whereas in a unit obviously the staff would have periods of duty of about eight hours only, and, of course, they would not be as emotionally involved as we are."
The parents had to consider, rightly, the heart-breaking decision that many of us have had to make and look for a residential place for their child away from home. That was in June of last year. The only place then offered was Essex Hall, in Colchester, some 40 miles away. Sarah went there for two three-week periods of short-term care. Essex Hall is now closed to children of a serious category. Although the embargo on the admission of older children has been lifted, the hall is overcrowded and short of staff.

Since I sought to raise the case in the House, the Harlow district administrator, Mr. Webb, whose ready assistance I acknowledge, mentioned two holiday places then available, at Great West Hatch, Chigwell, and on 19th May Mr. Dixon told me that he and his wife had gratefully accepted an offer of short-stay care at Hargrave House, Stansted.

We also appreciate the interest of the National Society for Mentally Handicapped Children which said that a place might be found for Sarah at its home in Norfolk. The society is the first to acknowledge that it is far away for visits and short holidays. For Sarah and those in her position there is no permanent residential unit within reasonable distance of their parents.

There is no disagreement between the two sides of the House that specialised mental illness hospitals should in time give way to psychiatric units forming part of district general hospitals, to day centres and to residential accommodation different from the old hospitals, one of which I know from my own family experience.

The aim is sound. Surely, it is right to rely as much as possible on the loving family, on home care sustained and relieved by day centres, and places of short stay to give respite to the parents and others.

I understand that a hospital for the mentally handicapped is planned and it is intended to site it near Epping. But building will not begin until some time between 1981 and 1986. I am not quite clear how such a hospital would accord with the new aim that I have summarised. Perhaps the Minister will be good enough to say precisely what is intended. Will the right hon. Gentleman also assure me that what is planned for North-West Essex—this new unit—will receive priority no lower than will the unit being considered for the City and East London area?

For a layman such as myself the scene is bewildering. I am uncertain whether the needs of North-West Essex have yet been clearly defined and whether, despite a plethora of joint consultative committees and so on, decisions have been reached on the future siting and financing of the long stay, the short stay, and assessment units and of holiday services for the mentally handicapped of all ages. Is there yet a precise definition of responsibility of health, education and other services and local authorities? It may be that I am not adequately informed, and that is part of the reason for raising this subject this afternoon.

In general, in the National Health Service—I say this because I do not want to be accused of being one of those Members of Parliament who are desirous of curtailing public expenditure but who ask for more public expenditure because of their particular constituency interests—waste abounds. There is misdirection of resources. There is a loss of revenue to the National Health Service of between £30 million and £40 million from the ideological extravagance of closing pay beds and turning consultants into whole-time State employees. That administration, as distinct from treatment and care-of patients, is excessive—

I should hate the hon. Gentleman to go down a wrong track. There has been little loss of income to the NHS as a result of the withdrawal of pay beds because most of the pay beds withdrawn up to now have been beds which have been authorised but have not been used. There is no intention of turning consultants into full-time State employees, because they are entitled to carry out any private practice that they can outside the NHS.

I am obliged to the Minister. I merely want to raise the matter lest anyone should say that Conservative Members of Parliament are asking for more expenditure when they are not concerned with the proper economy of the resources available. I do not think that the figure I have mentioned is necessarily the wrong figure. The Minister has not said that it is wrong.

In that case, I will pursue this matter—which is slightly extraneous—in another way, perhaps by means of a Parliamentary Question or by letter to the Minister.

That there is waste and misdirection of resources is not just the impression of outsiders such as the hon. Member for Epping Forest. It is the complaint of workers of all grades within the services and, indeed, of union representatives. The Minister of State might like to have a look at the white elephant of Witham. I believe that the Royal Commission has already made an interim criticism of the top-heavy and over-elaborate management system. This is something for which I do not wish to blame the Minister of State or his administration, but I hope that he will be able to tell the House of clear, firm decisions that can be given to parents such as my constituents who have nowhere within reach to which they can send children who have become too heavy a charge upon their energies and emotions.

3.55 p.m.

There is a point upon which the hon. Member for Epping Forest (Mr. Biggs-Davison) and myself can agree. I am very pleased that he has raised the case of Sarah Dixon in the House this afternoon and the difficulties her parents are experiencing, because it enables me to talk about her case and the prospects of solving it and the needs of severely handicapped children in the country generally and in Essex in particular.

I am prepared to agree with the hon. Gentleman that in many respects there is a misdirection of resources in the Health Service. This has been going on for 30 years, since the service was founded, and possibly even before then. The acute services have always attracted the great bulk of medical, nursing and health interest and, therefore, the great bulk of Health Service financing. Therefore, throughout the country, services for the mentally ill and mentally handicapped have been neglected and over most of the country are out of date and possibly inadequate because they are out of date.

It is our intention to redirect resources to the sectors of mental illness and mental handicap. Services for looking after the elderly, which often involve the psycho- geriatric elderly, the mentally ill and the mentally handicapped, are top priorities in the allocation of Health Service resources.

The circumstances of Sarah Dixon have been the concern of the Essex social services department and of the health services since about 1972 when attention was first drawn to the implications of the severity of Sarah's handicaps, both mental and physical. The lack of a comprehensive mental handicap service in the Harlow district means that patients and relatives must rely on a service from Essex Hall, Colchester. This is unsatisfactory.

The social services department has maintained close collaboration between the various voluntary and statutory services to ensure that appropriate help and guidance has been made available to Mr. and Mrs. Dixon in addition to regular social work support. Short stay periods of care at the Spastics Society Family Help Centre at Bury St. Edmunds were suggested, eventually tried and subsequently accepted by the family as being beneficial. However, the few specialised long-term centres that do exist in the country would inevitably take Sarah further away from her family. That is one of the major criticisms of Essex Hall. However, should a suitable vacancy occur in any such registered home which the family may choose, the county council would undertake to accept financial responsibility.

Mr. and Mrs. Dixon naturally wish to ensure the most congenial therapeutic environment for Sarah, because she will be leaving a home environment which is obviously highly caring and they wish to provide the closest substitute for the family home life which Sarah has been enjoying up to now.

I am entirely with the hon. Member in his wish to see children such as Sarah receiving the best possible care. It must be admitted, however, that our services for these children are far from satisfactory and, although the present situation is a great improvement on the position in the past, both my right hon. Friend and I—

It being Four o'clock, the motion for the Adjournment of the House lapsed, without Question put.

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

Both my right hon. Friend and I have consistently stressed the need to improve services for these children. The speed with which these improvements can be made is limited, of course, by a number of factors, but we have stressed again the priority which local authorities should place on residential accommodation for mentally handicapped children.

We issued planning guidelines to health authorities this March and we stressed the need to plan for improved supportive facilities to families. As well as issuing guidance, we have also made available joint financing moneys to local authorities. These are National Health Service moneys, but we are willing to see them used for local authority purposes which will assist the NHS in the discharge of its responsibilities, and this includes provision for children in the community.

The amount of money available has risen from £8 million in 1976–77 to about £32 million in this financial year, and it is aimed to level off at about £43 million per year by 1981–82 at today's prices. A large proportion of these moneys have in fact been spent on mentally handicapped children and their provision.

Turning to the Harlow health district, the voluntary association WISH, which stands for "We're Involved with the Severely Handicapped", manages a special care unit at the Great West Hatch Adult Mental Handicap Hospital at Chigwell with the help of some joint finance money, and this unit will shortly be moved to St. Margaret's Hospital, Epping to cater for a larger number of severely handicapped in an improved setting.

Harlow health district is financing the cost of the conversion of that building, and the revenue costs will be shared between the voluntary association, the health authority and the social services, using some of the joint finance money. In the longer term, therefore, if Mr. and Mrs. Dixon find it possible to keep their daughter at home, day facilities will be available in the Harlow district to support them.

But we also want to improve the hospital services for these children. Here we want to aim at giving them the specialist services that they need and an environment which furthers their development in every way.

I wish to pay tribute to the work of the staff in children's wards of mental handicap hospitals, and I take this opportunity of doing so publicly. None of the observations which I am about to make about our mental handicap hospitals should be taken as a criticism of the invaluable work performed by the staff in these hospitals. But they are working under several different sorts of constraint. First, all our efforts and the efforts of staff at bringing about improvements are made considerably more difficult by the legacy of huge, isolated hospitals, of which Essex has quite a number, with which we have been left by our predecessors. Hospital communities of 800, 900 and more than 1,000 are unnaturally large, and it is very difficult in those circumstances to create a homelike environment for residents and, equally important, an environment which attracts staff to work in the service.

In the long term, therefore, there is a need for locally based hospitals for the mentally handicapped where they can be in contact with their communities and their relatives. In the case of children needing hospital care, they should wherever possible be accommodated near their own homes in small domestic units separate from adult units and with close links wherever possible with the children's department of the district general hospital. Together, all these local units should form a comprehensive district service for mentally handicapped people.

In our guidelines which we have issued to authorities, we say that buildings should be designed with the needs of individual residents in mind and for domestic small group living. Children should be looked after in small family-size groups in homelike environments, and their daily lives should be as near to those of non-handicapped, non-hospitalised people as possible. Obviously this will all take a great deal of time.

It was largely with the residual problem of the large hospitals in mind that my right hon. Friend and I asked the National Development Group for the Mentally Handicapped to give us a report on how to improve the existing services in the mental handicap hospitals. After about 12 months of work, it is hoped that the group's report will be shortly presented to my right hon. Friend. This will make recommendations about hospital services for all mentally handicapped people, but the group will be particularly concerned about services for children. I gather that it has devoted a section of its report to them.

Besides this, the Development Team for the Mentally Handicapped has been specially set up by my right hon. Friend to give advice to health and local authorities on a whole range of services for mentally handicapped people. It has been asked by the Secretary of State to pay particular attention to the needs of children, and its panel includes specialists in child care. Its individual reports to authorities normally contain a special section on children's services. The team has completed two years of activity. Its first report of the work that it has been doing is due to be published this month.

Of course, all the good buildings in the world and the proper layout are of no good unless there is adequate staff to provide the services. There is a severe shortage of some of the types that Sarah might need. Physiotherapists, speech therapists and other paramedical staff are in particularly short supply, but this is a national matter and is not necessarily confined to mental handicap. But we wish particular attention to be paid to the development of the rehabilitation services in general.

We are very concerned, too, about the poor staffing ratios that still exist. Some hospitals have still not achieved the modest ratio laid down in the 1969 minimum standards for mental handicap hospitals, but, on the other hand, the number of nursing staff in those hospitals has increased from about 15,000 in 1969 to 23,000 in 1976, whilst the number of in-patients has fallen by about 10 per cent. It is possible that some definite improvement has been taking place, although I readily concede that the patients remaining in hospital probably represent a heavier burden of nursing care than the patients used to represent in days gone by, because, obviously, the patients that have been discharged to the community are the ones who are more capable of looking after themselves and were in times past capable of making a contribution to the running of the hospital.

We shall have a report this year from the Jay Committee of Inquiry into Mental Handicap Nursing and Care. This will give advice on the work of staff who provide residential care for the mentally handicapped, including children, and on the training that they need.

My right hon. Friend the Chancellor of the Exchequer has set aside £50 million for the National Health Service in 1978–79, in addition to the moneys that we already knew we would be getting this year. My right hon. Friend the Secretary of State has told authorities that he is very concerned to see that it is used for the improvement of staffing ratios and amenities in mental handicap hospitals and units. Here is an example of action taken by the Government to use additional resources as may become available for priority needs such as services for the mentally handicapped.

The North-East Thames Regional Health Authority received, as a result of this, £1,390,000 extra, and has decided that 50 per cent. of that sum, about £695,000, will be devoted to the improvement of staffing ratios and amenities in mental illness, mental handicap, geriatric hospitals and other similar units, and of this sum the Essex health authority's share will be £284,000.

One of the problems facing Essex is the need to maintain its existing very large mental handicap hospitals, which were originally built to serve very wide catchment areas, including many patients from London.

I hope that these facts and figures will show the hon. Gentleman that, on one of his concerns, not only is Essex receiving the same priority as the City and East of London Health Authority but that in the current financial year it is receiving a much greater priority than that area from the regional health authority.

The long-term strategy of Essex is to provide local facilities. To this end it plans the provision of a unit to serve the Harlow health district; it currently relies on the Essex Hall hospital, which has not been found entirely suitable for the Dixon family. This unit would provide not only long term care but also assessment and short-stay facilities to relieve families.

The area health authority's proposals are therefore to seek to provide in the Harlow district the services that Sarah requires. I understand that short-term care is being considered at Hargrave House, Stansted, which is a hostel for mentally handicapped children run by the Essex social services department and that there will be short-term care, possibly, at Essex Hall. I hope that, with continuing liaison between the health and social services, it will be possible to provide the necessary support to Mr. and Mrs. Dixon until the health authority's proposed unit becomes available.

We are actively seeking to improve the services required for severely handicapped children nationally. In particular, the Essex AHA is aware of the shortcomings of the services in the Harlow district and is taking steps to provide the facilities to which children such as Sarah are entitled.

I agree with the hon. Gentleman that the system of administration of the National Health Service as a result of the 1973 Act leaves much to be desired. That is common ground between us and that is why we appointed the Royal Commission, which we hope will report at the beginning of next year—I hope in January. Then we shall be able to see what improvements can be made in the organisation of the Health Service to ensure a more rapid and flexible response to situations.

Question put and agreed to.

Adjourned accordingly at twelve minutes past Four o'clock.