Understanding Schizophrenia

Schizophrenia is the name psychiatrists use to describe

what they see as a form of mental illness. It is a condition which results in a dramatic disturbance in the individual’s thoughts and feelings; they start to experience the world very differently and their behaviour may change and appear bizarre to others.

We do not know what causes this condition. but some of the most distressing symptoms can be controlled with drugs. Some people make a complete recovery but others unfortunately do not. and often end up living lonely and

impoverished lives.

There are many, sometimes conflicting, views about schizophrenia, which we look at in this leaflet. We do not try to tell you what to think, but hope you will draw your own conclusions from the information and ideas presented here.

Every person's experience of schizophrenia is unique.

The range of symptoms is so wide that what is called

'schizophrenia' may well cover several different

conditions. It can in fact be difficult to distinguish

schizophrenia from other forms of medically categorised

mental distress, such as manic depression. Some critics of

psychiatry say that schizophrenia, because it is so difficult to define, should be dropped as a diagnostic category.

Here is how one person experienced it: She was constantly pestered by voices: 'I didn't have any control of them and they used to wear me down and give me a headache and make me ill... Rhythms used to catch in my mind as well...things like a tapping...and it would be playing constantly and I'd end up exhausted.'

And with the voices went visions: '1 used to see houses and people used to come, and when I went to bed at night they used to send a little thing in, I don't know what, it used to run round the wall and talk to me...'

While people are diagnosed and treated as schizophrenic, it is useful to know what symptoms the psychiatrist looks for:

To the listener, it seems as if the person is unable to follow through a logical sequence of thoughts - ideas are jumbled up and often do not make sense.

The person hears imaginary voices. These may be discussing the individual's thoughts or behaviour, or urging him or her to take a certain course of action.

The person develops false beliefs - they may become convinced that they are being persecuted perhaps by secret agents or they may feel under the control of an external force which is inserting thoughts into their mind.

What these symptoms have in common is that the individual is out of touch with reality. But some people argue that these experiences are simply the way a person is expressing fear and confusion, and that an attempt should be made to understand what they mean to that person.

There are many other symptoms, some less distinctive. Apathy, lack of concentration and depression may be associated with schizophrenia.

Cultural differences confuse the issue even further.

Take, for example, a white, male psychiatrist, born and raised in English middle class society, and a patient who is a black woman, brought up in rural Jamaica and now living in a poor inner city area of England. With their very different experiences of life, they will not see or understand the world in the same way. They may have different political and religious beliefs, and express

their thoughts and feelings in very different ways. It would not be easy for them to communicate clearly with each other, especially if the patient is feeling distressed.

All too often the psychiatrist is overworked, has little time and has not had special training to understand people from cultures other than his own. All these factors can lead to a misdiagnosis.

About one in 200 people at some point in their lives, usually when they are young adults. They are evenly divided between men and women. It is more common among some groups of people than others. Currently there is concern about the high proportion of young Afro-Caribbean men who are being diagnosed as schizophrenic. You are also more likely to be diagnosed as schizophrenic if someone in your family already is.

It has been estimated that about one third of people diagnosed as having schizophrenia only experience one episode; another third have further episodes with periods of remission in between; and the remainder experience it as a chronic condition they have to live with the rest of their lives.

In popular mythology someone with schizophrenia has two personalities - perhaps alternating between being calm and being out of control (sometimes called a Jekyll and Hyde character). This misuse of the word 'schizophrenia', often sensationalised by the media, increases the confusion and creates unnecessary fear of violence. People diagnosed as schizophrenic are rarely violent.

It is not easy to identify the causes of a form of mental

distress which is so difficult to define. There are so many

factors which influence feelings and behaviour that it is

hard to deduce which factor has had which effect.

The following have been looked at as possible causes:

Genes are the means by which characteristics of parents are passed on to children. As yet researchers have not been able to identify a 'schizophrenia gene'.

BIOCHEMICAL:

We have differing levels of chemicals in our bodies and differing levels of response to them. Some affect our emotional and mental states. Recently research has focused on a chemical in the brain called dopamine. But it cannot

be said with any certainty that dopamine has a role in causing schizophrenia.

It is generally accepted that our early experiences of family life affect the development of our personalities. There have been several theories about the type of family background which may contribute to someone becoming

diagnosed as schizophrenic, but none have been proved. Researchers have found that a relapse is more likely if the individual's family is over-protective or over-critical.

Some studies suggest that schizophrenia is more likely to occur if the person has recently experienced stressful life events, such as the death of a spouse or a change of job. Stresses which are spread over a longer period, such as poverty or continuous racial harassment, may also be contributory causes.

Many psychiatrists conclude that schizophrenia is caused by a combination of factors: perhaps a person's genetic make-up makes them vulnerable to schizophrenia, which is 'triggered off' by stressful events.

There is no instant 'cure' for schizophrenia. Drugs can

control some of the symptoms. Some people have found

counselling or psychotherapy useful. Living where there is

support from staff and other residents can help people to

cope better, as can attending a day centre where people

feel accepted and enjoy the activities.

Unfortunately these services are often not available locally. Drug treatment may be all that is offered, with admission to hospital when the situation is

desperate.

It is worth seeking as much advice as possible about the services in your area. Try asking your GP, the social services department, community health council, citizens advice bureau and voluntary organisations such as MIND.

The first step is usually to contact your GP, who may refer you to a psychiatrist.

Major tranquillisers, such as Largactil, Stelazine and Modecate, are often prescribed. You may be given tablets or a syrup to be taken daily, or an injection which is given weekly, fortnightly or monthly.

People react to these drugs in different ways. Some find that they reduce disturbing symptoms such as hallucinations. This may enable them to lead reasonably normal lives in the community. Psychiatric research indicates that they may also prevent relapse. This is why many psychiatrists suggest a low-dose maintenance medication.

But the drugs also have a sedative (slowing down) effect. This can make it harder for the person to cope with frightening symptoms.

In addition they can often cause trembling hands, stiffening of muscles, blurred vision and other distressing effects. Depending on their severity, these may be a minor inconvenience or a considerable discomfort. Prolonged

use can cause permanent damage to the central nervous system (tardive dyskinesia).

Anyone who is on these drugs should have the dosage reviewed regularly. The aim should be to keep it as low as possible. MIND believes that there should also be advice and support for people who want to stop taking them.

MIND 's Making Sense of Treatments and Drugs.' Major Tranquillisers gives more information about these drugs.

People who have been diagnosed as schizophrenic, or as suffering from other forms of mental distress, have found it useful to meet together. This may be to share experiences on ways of coping; to campaign for better

services; or generally to support fellow sufferers. Voices Forum is a group of people who have been diagnosed with schizophrenia. It is user-run and associated with the National Schizophrenia Fellowship (see Useful Addresses).

Talking treatments give people a chance to talk through their difficulties with someone who is committed to listen and help. By talking about what has gone wrong in your life you may begin to make sense of problems and gain a better

understanding of how to cope with them.

Psychotherapy and counselling are forms of talking treatments. The therapist or counsellor may see people individually or in groups. Therapists working with people diagnosed as schizophrenic arid their families can help

them to improve the way they communicate, which makes a relapse less likely.

There is more information in the advice leaflet

'Understanding Talking Treatments'.

These nurses can visit you at home. They may offer practical help, a chance to talk or give you a drug injection.

They may be based in a local social services office or at a hospital. They can help you to get the most out of local services and welfare benefits. Hospital social workers help people leaving hospital to settle back in the community. They may be able to find you accommodation.

ACCOMMODATION:

There are hostels where people in need of support can live for a limited length of time and be helped by the staff to gain the confidence to live independently again. Sheltered housing schemes offer less intensive support to a group of

residents who can live there as long as they want.

A 'Housing Advice Leaflet' is available from Mind’s Information Unit.

These vary widely and may provide such services as therapy groups, counselling or advice, a chance to learn new skills, such as cooking or crafts, day trips or the

opportunity for a cup of tea and a chat. Some require a referral by a social worker or psychiatrist.

If you are particularly distressed you may need shelter and protection in an environment which is not too demanding. At present hospital is often the only place that provides this. It will give staff the opportunity to assess your

needs and try to find the best way to help you. And, for those close to you, it will provide some relief.

Most admissions are voluntary but, if you are unwilling to go into hospital, you may be admitted compulsorily, under the Mental Health Act,1983. MIND has produced a series of four 'Rights Guides' which explain your rights under this Act. You can obtain further advice from the community

health council, a law centre or solicitor, or Mind’s Legal Department.

Unfortunately, being in a psychiatric hospital or the psychiatric wing of a general hospital, is often a distressing experience. The place is often very drab with little privacy. People miss their own possessions and surroundings, and it can be frightening to be with other people who are acting in a disturbed way. There may be little opportunity to talk to the staff. If you stay

in hospital a long time you may become so used to the institutional routine that you find it hard to face the demands of the outside world again.

Many people who have been diagnosed with schizophrenia would like to see alternatives to hospital treatment. They would prefer residential centres for crisis support which are more informal and less reliant on drugs – true places of asylum where the emphasis is on talking treatments and friendly informal support.

When someone is discharged from hospital they may be given brief out-patient appointments with their psychiatrist.

An episode of schizophrenia will obviously cause you

many difficulties. The symptoms are frightening. You

may behave in ways which upset other people. When

you feel calmer you may find it hard to find the

motivation to sort out your life. It can be discouraging

to find that the support you need is not available. But

there are people who will be sympathetic, and others

who have come through similar experiences, may be

able to help you.

When you are over the worst, you will probably feel depressed, angry, ashamed and guilty. You may find difficulty in trusting other people and want to cut

yourself off. These feelings are to be expected, but it will not help to keep them secret. Try and talk about them to friends and family, or a counsellor.

There are also practical things you can do. Try and work out what activities will make you feel better, and set up a routine so that you do them even if it is hard to make the effort. They may include some regular exercise, listening to music or visiting friends.

It is usually important to take things gradually and to avoid situations which you find particularly stressful.

If you have a job, you may be able to arrange to work shorter hours until you have regained your confidence. If you are unemployed you may come up against discriminatory attitudes. A number of employers do however now operate an equal opportunities policy. There are also various schemes which enable you to train or get some experience in a supportive setting.

Mind’s Information Unit has produced a leaflet on 'Sheltered Work, Training and Employment Opportunities'; and another on 'Work, Earnings and their Effect on your Benefits'.

It is extremely upsetting and exhausting when a close

friend, or someone in your family, goes through an

episode of schizophrenia. You may want to help but find

that you cannot communicate with the person. They may

even be hostile to you.

It is important that you find support in coping with your own feelings. The people and organisations mentioned in this leaflet (see Where To Get Help) may be able to assist you. The National Schizophrenia Fellowship offers advice

and support, and has local branches (see Useful Addresses). Ask your friends to listen to you. If you are living with the person, try to get some time for yourself and involve as many people as possible in caring for them.

There are no easy answers. It can help if you bear in mind that the person concerned is suffering and is not being deliberately difficult. But you do not have to passively accept their behaviour or views. If the person does something you find offensive, say so.

It is not productive to argue with the person about their fantasies, nor is it useful to play along with the delusions. You can state your position, which may be 'I

don't see it like that, but let's not argue about it.' Concentrate instead on the feelings behind the ideas and fantasies; ask them if they are frightened for instance. In other words empathise with their emotions and encourage them to talk about them.

A person diagnosed with schizophrenia will benefit from the sort of caring we all appreciate. They may need a gentle push and encouragement if they are still very withdrawn, and praise for their achievements.

Practical help will be needed, perhaps with sorting out financial matters, welfare benefits, collecting a prescription etc. It is important not to take over more than necessary, and to do things together when possible. If you do act on their behalf, consult them and keep them informed so as not to increase fear and suspicion.

If all else fails, particularly if they or others are at serious risk, it may be necessary to take this drastic action. The 'nearest relative' as defined under the Mental

Health Act 1983, has the legal right to request a Mental Health Assessment from an approved social worker (ASW) to look at treatment options and to decide whether the person should be detained.

For more information about the Mental Health Act see Mind’s leaflet 'An Outline Guide to the Mental Health Act'. There is more information for friends and relatives in the advice leaflet 'Understanding Caring'.

'Understanding and Helping the Schizophrenic '. Silvano Arieti. Penguin Books. 1981.

'Schizophrenia: A Guide for Sufferers and their Carers'.

Jacqueline M. Atkinson. Turnstone Press Ltd. 1985.

All these books should be available from libraries.

The National Schizophrenia Fellowship (NSF), 28 Castle St,

Kingston upon Thames, Surrey KT11SS (081-547 3937).

NSF- London Advisory Centre,

As above (081-974 6814).

NSF - Birmingham Advisory Centre, Room 88189, 191

Corporation Street, Birmingham B4 6SE (021-236 4286).

Voices Forum, as NSF- London Advisory Centre.