Involvement of Carers

in the Care of People with Schizophrenia

The Scottish Office and the NHS in Scotland issued a publication "Services for People affected by Schizophrenia. A Good Practice Statement" in 1995. The discussion on "Involving Carers" which took place at the NSF(S) Members day on 28th May 1996, used this Good Practice booklet as source material.

The following is therefore NSF(S)' interpretation of that material, with some quotations from the booklet.

It is hoped that members will find these notes helpful when they are discussing with the psychiatric team the care of the individual with schizophrenia knowing that they stem from the Scottish Office and the NHS.

Why involve carers?

Carers may be relatives, partners or friends, ie anyone who has had to change their lifestyle in order to care for or take responsibility for another who is experiencing mental health problems. The carer does not necessarily live with the ill person.

"The NHS and Community Care Act places patients and carers first". To members of the psychiatric team, the patient's needs are paramount, even although the carers have inevitably been involved when the patient starts to become ill.

What therefore are the advantages of further involving carers?

"Early involvement of the family is often very helpful in developing good therapeutic relationships".

Carers know the patient's history. Sometimes it is only the carer who realises just how ill the individual is.

When patients have leave from hospital, for a few hours or a weekend, they mostly spend that time with their carers and, when discharged in a stable condition, they either go back home to live or visit frequently. Much of their time is therefore spent with informal carers.

Thus carers can help the adjustment back into the community. They can help restore the patient's self-respect and help in compliance with drug therapy, in monitoring of the illness and in maintenance of the drug therapy.

Carers' experience

Professionals who have some idea of what the carers have experienced, will probably get the most co-operation from carers.

The onset of the illness will have left carers confused, angry, hurt, demoralised and frightened of the future. They don't know why this has happened and wonder if they are somehow to blame.

"There are many emotional, financial and social burdens on the carers and on occasions, they may become concerned by threats or acts of aggression".

What do carers want?

They want, firstly, help and treatment for the sufferer. It is helpful to carers to know the diagnosis.

If they are to give the best possible support to the sufferer, they need information, on an ongoing basis because they cannot possibly take in everything at once. Even some family members who can only give minimal support, may want to understand and help.

Carers want information, on

the nature of the illness, what it means for the future

whether hospital treatment and other professional help is available when needed

what are the likely treatments and side-effects

the range of services available including benefits advice

who delivers the services and who co-ordinates them.

Carers may want specialist genetic counselling at some stage as they and other family members may be confused about this.

Carers have a need for support in coming to terms with the diagnosis and what it may mean. Contact with other carers can be very helpful. They should be given information on how to get this help e.g. from NSF (Scotland).

What can professionals do?

They can

listen to the carer and learn of the patient's history
explain what is happening, and help the carer to understand the patient's experience, the treatment and prognosis
give necessary information when required
help families with information on how to cope with difficulties
encourage patients to confide in relatives if these relatives are involved in their care
reduce any feelings of guilt that families might feel, emphasising that schizophrenia is an illness
involve the carer in preparation for discharge planning, including key family members, even visiting the family home. This involvement will improve the quality and nature of the support given by the carers
ensure that services focus on the needs of patient and carer, including domiciliary help, especially with elderly carers
ensure carers have access to someone at hospital or day unit to ask about progress and to access help
ensure that help given to carers is monitored by a reliable questionnaire to record the level of satisfaction.

Carers can be helped to realise that their role is just as important as the other 'expert' i.e. the professionals involved in the care and treatment of the sufferer. Carers are also experts in their own fields.

If carers are helped in these ways they may get back their self-confidence and cope more calmly and surely with the patient.