Services to the community - from a mental handicap hospital out-patient clinic JENNIFER DIXON, Senior Social Worker, Chelmsley Hospital, Marston Green, Birmingham Introduction

In recent years there has been a succession of highly disturbing enquiries into conditions in several hospitals for the mentally handicapped. Society is horrified, headlines are made, and those of us working in such hospitals tend to feel that we are all being judged accordingly. An editorial in ’New Society in Novem- ber 1978 pointed out that the Normansfield scandal provides further ammunition for those who want to see mental handicap hospitals bulldozed and replaced by community care. The article goes on to claim that community care for all our patients will never be a reality and, furthermore, that with “imagination, dedication and money” our hospitals could be trans- formed. However, in looking hopefully to the future it is easy to overlook the positive work of the present. Too often our hospitals are seen as isolated entities, detached from the rest of the community. In con- sidering the arguments for community care, as opposed to hospital care, it is easy to forget that the skill, expertise and experience in the mental handicap hospitals is already making a large contribution towards community care.

Dr. Peter Sykes and Dr. M. G. A. Izmeth, in their study “Psychiatric Needs of Residents in Hospitals for the Mentally Handicapped”, in *Apex in Septem- ber 1977 found that nearly 60 per cent of the resident population of a large mental handicap hospital did not require psychiatric advice in 1976. As a result, the psychiatric staff had more time available for com- munity out-patient and domiciliary care and the doctors felt that this was reflected in a drop of admissions in the period. Not all hospitals would be happy to cease routine ward rounds and visits as these doctors did; none-the-less, the skills of the hospital consultant in mental handicap are already being used for the benefit of the wider community. The out-patient clinic

I attended an out-patient clinic held in a mental handicap hospital over a period of six months. For various reasons some sessions had to be missed so that 1 was actually present at 14 clinics. I witnessed 30 interviews, in which 24 different patients were seen. Had I been able to attend each week I could have seen considerably more patients twice. Frequently, both parents accompanied the patient. The number of appointments booked for the morning clinic was generally only three, allowing about three-quarters of an hour per patient. Invariably, relatives got in touch if they could not keep the appointment.

Originally, I attended the clinic to evaluate the possibility of social work involvement in the sessions. However, I became interested in the total service which the patients were receiving, both from our hospital and from the community services. Areas from which patients came

The hospital has sub-regional responsibilities and a wide catchment area. The consultant, whose clinic I

attended, takes patients from part of a large city, a metropolitan borough and a county. A breakdown of the home addresses of the 24 patients is as follows: County patients 2; City patients 10; Metropolitan borough patients 12. Many patients travelled consider- able distances to see the consultant. Age range of patients

Ages ranged as follows: ................. 1

10 - 15 ..................... 15 - 20 . . . . . . . . . . . . . . . .

25 - 35 ....................................... 1 35 - 45 ......................

The majority of patients were therefore of school age and this probably reflects the nature of the catchment area. Frequency of out-patient appointments

Generally patients were seen approximately on a three monthly basis but more frequently if necessary. Parents were encouraged to contact the hospital in a crisis. Sometimes patients are seen for what is expected to be a single appointment. Sources of referral to the clinic

The most usual sources of referral were: (1) School doctors working in the Community Health Service (2) Social services departments.

Other referrals sometimes came from : (1) Consul- tants in a different speciality, for example, paedia- tricians (2) General practitioners. Reasons for referral

The largest single reason for referral was because the patient’s behaviour problems were causing con- siderable difficulties at home, school, or social education centre. Temper tantrums, screaming and hyperactivity were the problems most generally exhibited. These referrals often came together with a request for admission to hospital. The parents needed a service that could help them to understand the probable reasons for their child’s behaviour, how to aim to cope with the outbursts and how to evaluate progress. When parents became confident of the expertise, care and support offered them, they became less anxious about a hospital vacancy.

Other referrals during the period were for two main reasons, assessment and advice regarding placement or guidance concerning problems in puberty.

PART 1: DEGREE OF HANDICAP AND ASSOCIATED DIFFICULTIES Degree of handicaps of patients attending clinic

My initial reaction was one of surprise at the degree and range of handicap from which our patients suffered. Although aware of the large number of special care places urgently required in social educa- tion centres, as discussed in the National Development Group’s Pamphlet 5, Chapter 93, I had not expected so severely and multiply handicapped a group. Handi- caps could be broken down as follows:

Moderate retardation: 7 Severe retardation: 17 Mild physical handicap: 3 Severe physical handicap: 6 Epilepsy: 8 Mental illness together with mental retardation: 2

56 Apex . J . Brit. Inr t . Menr. Hand. , Vol. 7 No. 2, 1979, 56-58

As is apparent, some patients suffered from several handicaps. Those who were moderately retarded, fully ambulant and able to converse at a reasonable level were in the minority. Most patients were severely retarded and suffered from physical disability and/or epilepsy. Some came in wheelchairs and pushchairs, others were carried. Most of the severely retarded patients had little expressive speech and varying degrees of responsive language. Behaviour problems

Several had more than one problem. Of the 24 patients, 17 had behaviour problems.

Temper tantrums/screaming ............ 12 Hyperactivity .............................. 7 Promiscuity ? ................................ . l

In the last instance the father and step-mother of an ESN(M) girl were concerned that her behaviour was possibly promiscuous and sought help in dealing with this. Physical problems

bowel and bladder motions. One 17-year-old mongo1 boy had difficulty with his

PART 2: USE OF COMMUNITY SERVICES BY PATIENTS ATTENDING THE CLINIC

No. of patients attending

ESN(M) community school ..................... 3 ESN(S) community school ..................... 10

Schools

Residential school under auspices of voluntary association .............................. 1

Main centre 3

Special needs group .............................. 2

Adult training and social education centres

One patient had a place at a Birmingham day centre for physically handicapped people but, at the time of her appointment, had been refusing to attend. Community hostels for short-term care County patients City patients Municipal Borough patients

Voluntary societies County patients City patients Metropolitan borough patients

Nine of the 23 families were involved in some volun- tary society concerned with the enrichment of the handicapped person’s life. This is quite a high figure remembering that three of the children attended ESN(M) schools and their parents would be unlikely to be involved with such societies. Also, the two adults aged over 25 were not severely handicapped and did not use special leisure facilities. My impression of the parents involved in the voluntary societies was that they were generally the better educated and more articulate. Physiotherapy

Two parents said that their children were having physiotherapy at school. Others could have been receiving this service and their parents not aware of it. Speech therapy

One parent was aware that her child was having speech therapy. Again, others could have been receiving the service at school and their parents not aware of it. Home help

Service. Health visitor service

Community nursing service

Nursing Service.

....................................... I

2 I 1

2 4 3

No parents were receiving help from the Home Help

Two parents were having visits from a health visitor.

No patient was receiving care from the Community

PART 3: CURRENT INVOLVEMENT OF COMMUNITY SOCIAL WORKERS WITH FAMILIES HAVING A MENTALLY HANDICAPPED MEMBER

The involvement of community social workers was as follows: County patients City patients Metropolitan borough patients

These figures are commented on in the conclusion. PART 4: USE OF HOSPITAL SERVICES BY PATIENTS ATTENDING THE OUT PATIENTS CLINIC Day care

None of the 24 patients was receiving hospital day care other than one 16-year-old girl attending the hospital school who is referred to later. Short-term care County patients City patients Metropolitan borough patients

At the time of the survey, the hospital short-term care facilities were being used by this group of patients more than the community facilities. However, both the city and metropolitan borough were in the process of extending their short-term care facilities and the position might well alter. Some patients come to the consultant with a request for short-term care. Parents who have built up a relationship with the consultant might well choose to put their children under his care for short periods. Psychology department County patients City patients County borough patients

One county patient was still using the psychology service at a hospital which she formerly attended. However, a transfer to our hospital’s psychology service was planned. Social work service County patients City patients County borough patients

One metropolitan borough patient was receiving counselling from a social worker in a city psychiatric hospital; the mother of another patient was a nurse in a city general hospital and had received advice from the social work department there. Community nursing service County patients City patients Metropolitan borough patients

Hospital day school County patients City patients Metropolitan borough patients

PART 5: NEEDS OF PATIENTS ATTENDING

AT PRESENT AND IN THE FUTURE 1 find it impossible to be precise about this. Whilst

I attended the clinic, two families asked for the place- ment in hospital of their child. Another family with a six-week-old Down’s syndrome daughter, came to the consultant for advice and information but remained adamant that they would stand by their previous decision, namely to have their child taken into care. Others seemed willing to continue to try to cope if the hospital guaranteed periods of short-term-care throughout the year and continued to give support through the clinic.

Many factors, both social and economic, will influ- ence whether or not these 24 patients, at present living in the community, will be able to continue to do so. Society has become more sympathetic towards the mentally handicapped child but this sympathy is not always extended to the mentally handicapped adult. For “Community Care” to be successful the com-

1 6 9

5 7 -

2 2 __

- 1 -

1 - -

- - 1

OUT-PATIENTS CLINIC FOR HOSPITAL CARE

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munity as a whole must be supportive towards the mentally handicapped adult and accept that the services which he needs must be located in ordinary streets, such as theirs.

“Community Care” is not cheap and to establish a comprehensive community service, ideally giving a 24-hour cover, would involve considerable financial outlay. Joint local authority and area health authority financing would probably be appropriate.

Conclusions and observations 1. Some of the children attending the clinic are seen by the consultant on his visits to their schools. I felt this was particularly helpful for parents, who then tended to see him as a community or family psychia- trist, not just as a hospital specialist. 2. Part 1 of this paper details the degree of handicap of patients attending the clinic. Overall, the patients were a severely handicapped group and of the 24 patients, 17 had behaviour problems. Many of the parents were under stress and their lives seemed to revolve to a large extent around the needs and problems of the handicapped member. It was apparent that many of the outpatients were more severely handicapped than a large proportion of the hospital population. If these outpatients came into hospital they would need care on high dependency wards. 3. Part 3 which deals with the current involvement of community social workers with families having a mentally handicapped member, shows that 16 out of 24 families had a community social worker visiting. However, discussion with the parents showed that these figures give an over-optimistic idea of the amount of social work time which the families actually receive at present, and certainly of the amount of social work help given in the traumatic days of the handicapped child’s babyhood and infancy. Several parents men- tioned how much they would have appreciated some support and information at that time.

The municipal borough referred to in this paper has recently appointed a multidisciplinary team to work exclusively with the mentally handicapped of the borough. Team members have been systematically

ORGANISING A TOY LIBRARY a description of the “IMS Toy Library Service

This booklet, by Barbara Wroe, BIMH Toy Librarian is based on the series of Toy Library articles originally published in Apex.

It outlines the aims and functions of the BIMH (IMS) Library and goes on to describe the premises and equipment, organisation (including obtaining and record- ing toys) and the clients who use the service. I t concludes with a section on the value of play, a final note of advice and a short list of references and further reading.

Price: 75p post free Published: January 1979

*Now BIMH

Orders to : BIMH Publicatiom, British Institute of Mental Handicap. Wolverhampton Road, Kidderminster, Worcs. DYIO 3PP Cash with orders if at all possible please.

BIMH Teaching Toys BIMH wooden and soft toys have been used in the BIMH Toy Library for some time. As well as being useful for teaching specific tasks they have proved invaluable in aiding increased cooperation, concen- tration and manipulation in mentally/physically handicapped children and adults. Further details, with diagrams, prices and order form are available from:

RlMH Teaching Toys, Ilritish Institute of Mental Hundictip. Wolverhampton Road, Kidderminster, Worcs. DYlO 3PP

visiting all their mentally handicapped residents. Some parents had received a visit for the first time in a number of years. Hopefully this service will continue.

Other local authorities are considering appointing specialist social workers. Unless this is done it would seem likely that the mentally handicapped will continue to be a low priority on the average social worker’s caseload. A number of parents commented that they never saw the same worker on two con- secutive visits, or that they always had to initiate visits themselves by contacting the social services depart- ment.

Clearly, community social workers have a vital role in preventing the unnecessary admission of the mentally handicapped to permanent hospital care. My conclusion, from this very limited survey, is that there are as yet insufficient workers and resources to do this. Planned and regular hospital short-term care and regular lengthy consultations with the hospital psychia- trist obviously helped this group of parents to cope. 4. Regarding the involvement of our hospital social work team in the out-patients clinic, we are obviously not needed to provide a counselling service, as this is done by the psychiatrist within his interview. However, I feel that we should be involved in:

1 . Making links with the community social workers. Where a patient does not have a community social worker, pressure could be brought to bear on the social services department to provide one. 2. If it is impossible to get a community social worker to visit, the hospital social worker could become involved in home visiting and assessing the patient in his home environment. Also, I became interested in the possibility of estab- lishing some kind of group for parents coming to out-patients clinic. Perhaps some type of “Parent Workshops”, run by the multidisciplinary team, would be most helpful.

5. Hospitals such as ours are thought by some to be an anachronism. Those of us working in them acknowledge the need for change, innovation and new ideas. However, whilst continuing to care for our in- patients and rehabilitate as many of them as possible, we are conscious of the needs of the wider community of the mentally handicapped and the part we can play in helping them to continue to live with their families.

References 1. New Society, November 30th, 1978. 2. Sykes, P., Izmeth, N. G. A., Psychiatric Needs of Residents

in hospitals for the Mentally Handicapped. Apex , Septem- ber, 1917, Vol. 5, No. 2 .

3 . Day Services for the Mentally Handicapped. National Development Group Pamphlet No. 5, July, 1977.

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