Do mentally handicapped people require specialist community nursing care? HILARY JONES, Community Nursing Sister,

,formerly of Princess Marina Hospital, Northampton now working in the Bromsgrove area, based at Lea Hospital, Bromsgrove, Worcs.

The current trend in the care of mentally handicapped people is to’ enabb them to live in the community alongside their families and friends, rather than banishing them to hospitals miles away from home. However, a family which has to cope with a handicapped member has innumerable problems to face, and it is essential that back-up services are provided. During the past ten years a specialist community nursing service has developed throughout the country to care for the mentally handicapped within their own homes and other residential accommodation in the community. The following article evaluates the role of the community mental handicap nurse.

It is difficult for staff on a hospital ward to cope with furniture smashing, clothes ripping, faeces smearing, incessant screaming, constant headbanging and the numerous other behaviour problems associated with mental handicap - but it is a different situation to be faced with this type of behaviour at home. A nurse is trained to cope with a doubly incontinent, cerebral palsied adult - the wards have various labour-saving devices to help in the management of such people - but parents are often at a loss to know just how to handle their handicapped child.

Role of the community nurse Only specialist community nurses have had the

essential experience in mental handicap nursing which will enable them to carry out their duties as advisers and supporters to families of the mentally handicapped. They have probably spent a minimum of four years on the wards and they know the pressures that dealing with a multitude of behaviour problems can bring.

They know how difficult it can be to dress a severely handicapped, spastic adult. They know how many sets of clothing a handicapped child needs each day, how short a time a new toy can last before it is broken, how frightening it can be to watch someone have a series of epileptic fits, how embarrassing it is to take someone shopping and see him urinate on the floor, pull down the displays or eat the sweets at the cash desk. They know the frustration involved in spending months trying to teach a child to feed himself - the joy when eventually he puts the spoon to his mouth himself. By having this experience and understanding, community nurses should be able to contribute posi- tively to the families they visit. They are not likely to be repulsed when hearing of someone’s dirty habits and they can offer practical advice and guidance on eliminating such behaviour.

Knowledge of available services Other people, such as social workers, health visitors

and the staff of voluntary organisations also play an important part in the care and support of the handi- capped in the community. However, they have other duties to perform for other client grou s and, therefore, cannot be expected to have the speciafb knowledge of mental handicap which community mental handicap nurses can offer.

By being specialists, community nurses devote their whole time to mental handicap services. Throughout their training they will have worked at special schools, adult training centres and day nurseries and will have spent some weeks at different hostels. Their experience within the mental handicap hospital will have included spending time in the training departments, school and psychology department. Whilst on the wards they will have dealt with a wide range of handicap, from a low- dependency adult who works in the laundry, to a pro- foundly handicapped spastic child who requires total nursing care.

In the nurse training school they will have been taught basic anatomy and physiology, first aid, causes of mental handicap, the care and training of different types of patients and behaviour modification techniques. They will have learnt also about more abstract subjects, such as stress, mental mechanisms and so on, which now become far more realistic.

I t is because of this comprehensive training that specialist community nurses have so much to offer. They are able to answer the countless questions which worry parents, who are often reluctant to ask the doctors for further information. They can advise on training and management of the child and know when to contact other professionals, such as the psychologist, speech therapist, physiotherapist and occupational therapist, whom they think have something to offer the individual with whom they are working.

It is part of the community nurse’s role to visit special schools and adult training centres and to liaise between them and the parents. They should also attend Gateway clubs, toy libraries and voluntary organisation meetings, which broaden their outlook and enable them to inform families of the different facilities available. By visiting such places they are able to see their clients in many different situations and can, therefore, build up a picture of their behaviour and personality which is necessary for their long-term management.

An important part of a community nurse’s role is the link-up between hospital and home. Many mentally handicapped people now receive “phased-care” at hostels, community units or in hospital. This means that the person goes into such an establishment on a regular basis which not only benefits him, as it enables training programmes to be initiated and established, but it also gives the family a well-deserved break. Phased-care prevents many permanent admissions to

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hospital and many more families arc able to be helped on this basis. Community nurses are able to liaise between wards and families and they can initiate and monitor training programmes, so that there is con- tinuity of approach whether the child is at home or away.

Parental support When parents are told that their child is handicapped

it corns as a greai shock. Guilt feelings come to the fore, parents often blaming each other for causing the handicap. I t takes many parents months, or even years, to come to terms with the fact that their child will never be normal and there is a tremendous fear about the future.

It is very important for a community nurse to visit the parents a t this stage, as they often have a need to discuss the situation with someone who can reassure them and offer advice. The nurse may be able to put the parents in touch with others in the same predica- ment and will be able to give them information about various organisations which exist for the benefit of handicapped people and their families, such as the National Society for Mentally Handicapped Children and Adults, the Down’s Children Association, the Hyper- active Children’s Support Group, and numerous others. Parents often feel that they are the only people who have ever produced a handicapped child. The reassurance that there are hundreds like them in their area often helps them to come to terms with ihe situation.

As thc child gets older, the community nurse is able to become more involved. Practical advice on feeding, toileting, washing and dressing can be given and the nurse can liaise with other professionals to provide aids such as Manoy plates, non-slip mats and so on. Parents need to have thc elements of behaviour modification explained to them in simplc terms - often they allow their children to be unruly and undisciplined “becausc they don’t know any better” and this often leads to szvere behaviour problems in adolescence.

Adolescence brings with it many new problems - parents often cannot accept that, although their child has a baby’s mind, he may be sexually mature. A community nurse should be able to talk freely to the parents, who often are relieved to discuss their prob- lems with someone who understands and who can offer advice and reassurance.

The step from school to adult training centre is as worrying for the families as a normal schoolgirl going for her first job. Here again the nurse can explain the

different routine, tell the child about others who go to the centre and generally reassure the families. By this time the parents are often getting old and they may worry incessantly about the future. Now is the time to alert the Social Services Department, and try and arrange some form of phased-care, so that the wrench of finally leaving home will not be too great.

I t is also a community nurse’s role to monitor stress situations and to try and prevent a breakdown. For example, ihe young mother, who feels suicidal and on the verge of battering her child, may just need a week‘s break - so relief care must be arranged. An elderly widow, looking after a middle-aged, handicapped daughter may soon be unable to cope - again pro- vision musi be made. l t is only by being a specialist in the field of menta-l handicap that the nurse knows of the facilities available to such people and can get help when necessary.

Before community nurses were employed, parents were often left to bring up their handicapped child without any help whatsoever. This led many of them to abandon their children in mental handicap hospitals, never visiting them in case they were made to take them home. Nowadays times have changed, and many parents at last get the support they need. They feel that they are able to cope with their child at home and know that ihey can contact the community nurse if any cmergencies occur. They can talk out their problems in their own home and be given practical advice. any information they require, and the opportunity to discuss their child’s particular problems with other relevant professionals.

Conclusion Which other professional group has the benefit of

many years experience of working in a residential setting with so many different types of mental/multiple handicap? Which other professional group has worked in the various training establishments, again catering for a wide range of handicap? Which other group of professionals has had such a long, intense training, solely on the subject of mental handicap? Which other group of professionals knows the strains and stresses which often occur when dealing with the handicapped - in a home situation?

In my mind there is a very strong case to provide adequate community nursing services. Experience is what matters, and a Registered Nurse for the Mentally Subnormal is the only person who has had such a wealth of experience in dealing with mentally handi- capped people.

Continued f r o m page I21 to be used on rare occasions. If we really do want to understand the handicapped child’s world, before we gently lead him to share ours, we would do well to study olfaction in depth. Smelling is a very private affair. It does not require vast sums of money from parents or teachers. We need to begin by building up a collection of items that have distinctive smells, such as soap, polish and rubber and then, if there is suffi- cient interest, we can put together an “olfactory paint box”, so that many everyday flavours (plus smelling strips) are available to be used in the home or the classroom.

With profoundly handicapped children it is necessary to look for preferences as demonstrated by selective mouth exploration, headlmouth co-ordination, hand pantomiming, early vocalisation and so on. With the more able child we can look for new and spontaneous language and we can play guessing and memory games.

I feel the smell of success in my nostrils but need guidance and backing to take the ideas further. The aim would be to produce practical teaching suggestions and a safe kit for day-to-day use with children.

References Chapman, E. K. Vi.wally Hnndicapped Children and Young

Fraiberg, S. Insights froin the Blind”, London : Souvenir Press,

Moncrieff, W. R. Odours. London: Heinemann, 1970. Rowc, A,, et al. Englisla through Experience. London: Blond

People. London: Routlcdge and Kegan Paul, 1978.

1977.

Educational Books 2nd Edn.. 1974. Sarnat Harvey, B. Olfactory reflexes in the newborn infant.

Shoesmith, K. Scent and Smell. London: Burke Books Ltd., J . Paediat. ; 1978, p.624.

1973. * * *

Hampstead Child Therapy Clinic, 21 Maresfield Gardens, London, WI will supply a reading list, based on the work of thcir Study Group on Blind Children.

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