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.
Page design copyright © Genesis Software 1997