Involvement of Carers in the care of people with schizophrenia This paper is based on and quotes good practice statements made by The Scottish Office and the National Health Service in Scotland in the mid 1990s. It is hoped that members will find these notes helpful when carers are discussing with the psychiatric team the care of the individual with schizophrenia, knowing that they stem from official documents. Who are Carers Carers may be relatives, partners or friends; anyone who has had to change their lifestyle in order to care for or to take responsibility for another who is experiencing mental health problems. The carer does not necessarily live with the ill person. Why involve Carers 'The NHS and Community Care Act places patients and carers first'. To members of the psychiatric team, the patient's needs are paramount, even though 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 their relative/friend to see the potential benefits with medication and other therapies. Also they are likely to be the first people to see any changes related to the illness as well as encouraging the maintenance of the medication or 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 patient. It is helpful to carers to know the diagnosis. If they are to give the best possible support to the patient, carers need information, on an ongoing basis because they cannot possibly take everything in 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. ensure they understand the cultural background and issues explain what is happening, and help the carer to understand the patient's experience, the treatment and prognosis give necessary information as required help families with information on how to cope with difficulties encourage patients to confide in relatives especially 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, and even visiting the family home. This involvement will improve the quality and nature of the support given by the carers make sure that services focus on the needs of the patient and carer, including domiciliary help, especially with elderly carers make sure carers have access to someone at hospital or day unit to ask about progress and to access help ensure that help given to carers are 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 'experts' such as the professionals involved in the care and treatment of the sufferer. Carers are also experts in their own fields as well as by their knowledge of the relative/friend. If carers are helped in these ways they may get back their self-confidence and cope more calmly and surely with the patient. Other Reading A check-list for families, Royal College of Psychiatrists, available from NSF(Scotland) Confidentiality, Information Paper No. 5 available from NSF(Scotland) Carers Information Pack, NSF(Scotland), 1999.

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