Understanding Schizophrenia 25/6/02 7:59 am Page 1

Understanding
Schizophrenia
A booklet for those wanting to
know more about schizophrenia

Understanding Schizophrenia 25/6/02 7:59 am Page 2

This booklet was written

by Dr Sophie Zeman,
Scientific Officer of the
Mental Health Foundation

Published by:
The Mental Health Foundation
83 Victoria Street, London,
SW1H 0HW
Reg Charity No: 801130
Copyright 1997
The Mental Health Foundation
Cartoons drawn by
Simon Whiteman
The Mental Health Foundation

Understanding Schizophrenia 25/6/02 7:59 am Page 1

What is schizophrenia?
Schizophrenia is a diagnosis of mental illness given to some
people who have severely disrupted beliefs and experiences.
While most of the medical profession - psychiatrists and other
doctors - accept and use this diagnosis, some people feel that
it is not valid. This controversy is discussed further later, while
the next sections explain more traditional views.
During an episode of schizophrenia, a persons experience and
interpretation of the outside world is disrupted - they may lose
touch with reality, see or hear things which arent there and act
in unusual ways in response to these hallucinations. These
episodes may develop slowly, but once established usually last
a few weeks and respond fairly well to drug treatment. About a
third of people who experience an episode of this sort never
have another, while others may have continuing problems and
repeated episodes. These are described more fully in the
section on symptoms.

Understanding Schizophrenia 25/6/02 7:59 am Page 2

Who gets schizophrenia?

Schizophrenia affects men and women from all countries,
cultures, backgrounds and walks of life. About 1 in 100 people
will have one episode, and two-thirds of these will go on to
have further episodes.
Schizophrenia usually starts in the late teens or early twenties,
but can also affect older people for the first time. There is often
uncertainty and doubt about what is wrong before a diagnosis
of schizophrenia is made: the people affected may be scared
and confused, relatives dont understand the change in their
loved ones and doctors are hesitant about predicting outcome.

Why do some people get

schizophrenia?
Despite many theories, it is not known why people get
schizophrenia - several factors probably work together to cause it.
One clue comes from the fact that schizophrenia sometimes
runs in families. Schizophrenia was for a time blamed on
upbringing, but we now know that this familial link is largely
genetic. There is 10 times the usual possibility that the child of
someone with schizophrenia will be affected. But it still isnt
known what factor(s) may be passed on from the parent to the
child which increases their risk.
Another clue comes from pictures of the brains of some
people with schizophrenia, showing that these have some
variation from those of people without the illness, suggesting
that the brain may not have developed in the usual way.
Another important thing that seems to happen in schizophrenia
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is that the activity of the brains natural chemical substances neurotransmitters - which allow brain cells to work normally
is disrupted. The main neurotransmitter to be affected is
dopamine - we know this partly because the drugs used to
treat schizophrenia seem to work by reducing the activity of
dopamine. But still, we dont know why or how its normal
activity goes wrong.
Some street drugs - ecstasy (E), LSD (acid),
amphetamines (whizz/speed) and cannabis (hash/dope) are
thought by some people to be triggers of schizophrenic
episodes. They may bring on at least some of the symptoms,
sometimes irreversibly, or can make people who already have
the illness worse.

What are the symptoms

of schizophrenia?
There are two groups of symptom in schizophrenia - doctors
call them positive and negative. The positive symptoms
are abnormal experiences and the negative ones are loss of
normal behaviour. People with schizophrenia may also have
other mental health problems such as depression and
substance abuse and some physical illnesses may be more
common in people with schizophrenia than in others.

Positive symptoms:
The three main positive symptoms are: feelings of being
controlled by outside forces - thoughts and actions taken over;
hearing, seeing, smelling or feeling things which arent there
(hallucinations) and false and unusual beliefs (delusions). These
delusions are sometimes very frightening - people with

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schizophrenia believing for example that people are plotting to

kill them or that their conversations are being recorded. Such
persecutory delusions are very isolating - well-meaning
attempts at explanation often only confirm the idea that no-one
is to be trusted.

Negative symptoms:
The symptoms described above occur in a variety of
combinations during an acute episode, whereas the negative
symptoms tend to be longer-lasting. Some people with
schizophrenia feel tired all the time, cannot concentrate and
lose energy and motivation - a
picture complicated by the sideeffects of drugs used to treat
schizophrenia, which may
be very similar. Simple
things become
impossible, talking to
friends a chore, and
even eating and
keeping warm get neglected. Maintaining relationships and
interest and affection in friends and loved ones may become
difficult, and it is easy to see how someone affected might take
a long time to seem like their old self again.

Myths about schizophrenia

Perhaps the most common myth about schizophrenia is that it is
a split personality, and that the behaviour of people who have
it swings dramatically between normal and dangerously
disturbed. This is not true: people with schizophrenia are rarely
dangerous, but are experiencing things that are unpleasant and
often frightening for them.
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Some people (ranging from those diagnosed with schizophrenia

to those encountering it as professional or non-professional
carers) reject it as a medical diagnosis. They think that the signs
and symptoms are too disconnected for a general diagnosis to
be made. Indeed, some people find meaning and value in their
schizophrenic symptoms and many people who hear voices
have had no contact with psychiatry.
However, even people who disagree about the name or nature
of schizophrenia tend to agree that help and support is needed
for those affected.

How is schizophrenia treated?

There is still much to be discovered about schizophrenia and
how best to treat it. Scientists and people with schizophrenia
sometimes report promising new approaches to treatment or

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things which work for them. For example, the possible value of
certain fish oils has recently received attention. But, as all such
approaches cannot be discussed here, the following section
describes the most commonly beneficial drug and non-drug
treatments.

Drug treatment
The first treatment usually given to people with schizophrenia is
a drug to reduce the positive symptoms - the unusual behaviour
and perceptions of an acute episode. These drugs, which are
called anti-psychotics or neuroleptics, mainly act by reducing
the action of the natural brain chemical dopamine, which is
thought to be overactive. The positive symptoms usually lessen
in a few weeks. However, because of the risk of repeated
episodes, it is usually advisable to continue taking the drugs at
a lower dose for some time, or possibly for ever.
Long-term treatment can be
by daily tablets but is often
given by regular injections.
Some of the common drugs
are chlorpromazine,
haloperidol, Stelazine and
Depixol, although there are
many others and those listed
here have other names.
Newer drugs which differ
from those above in two
main ways should be
mentioned: they act on other
brain chemicals as well as
dopamine (this is thought to

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be important in how they work) and they may help with

negative symptoms as well as positive. These drugs are
clozapine, olanzapine, risperidone and sertindole which, until
recently, were only given to people not helped by other drugs.
Some may cause problems with the blood, which is why, if you
are taking them, your doctor may have suggested regular blood
tests.

Side-effects of drugs
Unfortunately, drugs used to treat schizophrenia do have sideeffects, most commonly problems with movement - stiffness,
shakiness and restlesness. You may be prescribed another
drug to reduce these side-effects, such as benzhexol or
procyclidine.
Other problems include sleepiness, weight gain, problems with
sexual activity, and, in some people who have to take the drugs
for a long time, tardive dyskinesia (TD) - movements of the
face, mouth and tongue, sometimes extending to the limbs,
which may not go away, even if the drugs are stopped.

Non-drug treatment
Drug treatment is useful in recovery from an acute episode and
long-term medication has been shown to reduce the risk of
relapse. There are other steps that people with schizophrenia
and those caring for them can take to improve their quality of
life. For example, gently encouraging people with severe
negative symptoms who have become demotivated and
reclusive to structure their days with achievable aims, and to
accept offers of company, may be very helpful. These social
treatments may be offered by day-centres, drop-in centres,
hostels or hospitals.

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It is also often useful for people with schizophrenia to have

some kind of individual counselling, giving them the chance to
talk about the problems their illness has caused, how they feel
now, and how recurrences can be prevented. There are often
good reasons for involving those living or caring for those with
schizophrenia in some of these discussions, as the input and
support of carers is an important factor in maintaining the
future mental health of a person who has suffered an episode
of schizophrenia.
People with schizophrenia can often, through trying different
treatments and methods of coping, find the package of
care that works best for them. There is increasing interest
in advance directives in many aspects of medical care,

including that of schizophrenia. If people fear that, during a

period of crisis, they will be unable to say how they want to be
treated, or that this will not be taken seriously, they can make
this clear during a period of calm. These directives should not
be ignored unless: they are unclear, they do not apply in the
particular situation that has arisen, or the Mental Health Act is
used to override them.
Crisis Cards are another useful way that people who may have
periods of severe distress or crisis can make their wishes
known. Cards are carried at all times and can draw attention to
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any particular problems or particular help that the cardholder

wishes to receive, and name someone who they wish to be
contacted. Cards can be obtained from Survivors Speak Out
(see Where to get further help).

Are people with schizophrenia

treated as they would wish and
what are their rights?
Some people with
schizophrenia do not accept
the diagnosis itself.
Furthermore, an aspect of the
condition is that people with
the symptoms described
earlier do not believe that
there is anything wrong
- the things they are hearing,
seeing, feeling and being
frightened by are indeed very
real to them - and it may be
difficult to persuade them
otherwise. This can lead to
conflict between people with
schizophrenia and those
looking after them.
Steps sometimes have to be taken to ensure that people in the
acute phase of the illness are admitted to hospital and treated.
Under the Mental Health Act, if two medical opinions and an
approved social worker agree, a person can be detained in
hospital for their health or safety, or that of others. These

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admissions may last for up to 6 months, and be renewed, but

the person detained has a right to appeal at an independent
tribunal. Furthermore, there are strict rules about how such
people must be treated once they are in hospital and about the
information that must be provided to them and their relatives.
The organisation MIND has a department specialising in legal
aspects of mental illness and is a useful source of help (for
contact details, see Where to get further help).
People receiving psychiatric care, including those with
schizophrenia, have rights to support with day-to-day life and
there are a number of things you can expect from your local
services.
You should be automatically assessed to identify your needs in
this respect, but can request it if it doesnt happen. The people
who do these assessments will usually be called mental health
social workers or care managers, are members of your local
Health Authority and often part of your local Community Mental
Health Team (CMHT). They will see what your needs are for such
things as support at home, day or residential care and can also
help to check that you are receiving your correct state benefits
(financial support). The A to Z of Social Security Benefits (see
Further reading about schizophrenia) is also helpful.
People with schizophrenia want and need interesting ways to
spend their time. Many get back into mainstream employment,
others may want to find more supported environments, and
this is being made easier, with schemes for voluntary and paid
work. Disability employment advisors (DEAs), who can be
contacted through your local Job Centre, offer advice on paid
and voluntary work and courses, as can your local Citizens
Advice Bureau.
Local groups such as those set up by Rethink (formerly National
Schizophrenia Fellowship, NSF) (see Where to get further

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help) can help recommend things to do, and Rethink also run
a range of courses.

How can people with schizophrenia,

and their carers, get help?
The first stage
Getting help for people with schizophrenia is often a
complicated process. While carers may be well aware that their
friend or relative is behaving unusually, they themselves may
be adamant that they are not ill and refuse treatment. They may
also know from past experience that drug treatment is all that
they are offered. However useful this may be, the side-effects
may make people very reluctant to take them. It is the right of
everyone to refuse treatment, if they are capable of
understanding its possible benefits and the risks of refusal.
This may mean that people detained in hospital, and who lack
this insight, may be given treatment against their will.
The most obvious route to help for a person with schizophrenia
is through their family doctor (general practitioner; GP), who will
be able to obtain the appropriate specialist psychiatric help, and
may involve social services, especially if there are young
children in the family.

Ongoing care
Once a person with schizophrenia has made contact with the
medical system, which can include a period of time as an inpatient while recovering from the acute phase of the illness,
they may be helped in a number of different ways when they
leave hospital. It is important to remember that this may need

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to involve treatment for other mental health or physical

problems, of which they may be particularly at risk.
A place in a residential hostel with practical and medical
support may be offered, as may access to drop-in services,
classes or workshops. Community psychiatric nurses (CPNs)
visit people with schizophrenia who live at home, and may
work as part of Community Mental Health Teams (CMHTs)
which also include, commonly, occupational therapists (OTs),
social workers (approved social workers; ASWs), psychologists
and psychiatrists.
One member of these teams - the keyworker - takes special
responsibility for the person with schizophrenia, and gets to
know them and their family or other carer. They will draw up a
care-plan as part of what is now also known as the care
programme approach (CPA).
These keyworkers can also offer help and advice about jobs,
voluntary work, education and training and their input should
reflect the findings of their clients needs assessment,
described earlier.
If people with schizophrenia or other mental health problems
need help in a crisis, this can sometimes mean going into
hospital. However, it is clear that people often want to avoid
this, and useful alternatives are being developed, such as home
treatment teams and crisis houses.

Help in an emergency
The section on non-drug treatment, above, describes how
you can help ensure that you are looked after as you would
wish in an emergency or crisis. If you are already in contact
with the psychiatric services you may have a keyworker to
whom you can turn. Other ways to get help rapidly are through
your own doctor (GP), via the Accident and Emergency

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department of your local hospital or, in some areas, by

contacting your local Community Mental Health Team. This
CMHT will have emergency (out-of-hours) social workers and
can usually be found in your local or business phone book.
The police also have a list of people who can offer help in a
mental health crisis - you can find the number of your local
station under Police in the business phone book or you can
dial 999.

Help for carers, family and friends

Carers of those with schizophrenia may not know where to
turn. Where to get further help gives some suggestions.
Furthermore, it is important to remember that, while people
with schizophrenia are very rarely dangerous, the Mental Health
Act described above can be used to obtain emergency and
compulsory help for them, and it may be their carer who
instigates this. It will always be an anguished and difficult
decision, but may ultimately be the right thing for their friend or
loved one. How to get help in an emergency is also described
above.
Carers of those with schizophrenia have two main needs:
getting the best care and treatment for the person they are
looking after, and ensuring that they themselves are able to
cope and take breaks. This is not to deny their involvement
with and concern about their loved ones distress, but there
is evidence that low stress is beneficial to the long-term well
being of people with schizophrenia. The emotional stress of
worried relatives and friends must be minimized - a tired and
over-wrought carer will not provide a peaceful home.
Organisations such as the National Schizophrenia Fellowship
and Carers National Association can offer further advice (see
Where to get further help).

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Are there things we still dont

understand about schizophrenia?
Yes, there are still many things about schizophrenia that we do
not understand: exactly what causes it, why some people get
it, how to prevent relapse and whether approaches to care and
treatment currently taken are best.
Peoples opinions differ - sometimes those of patient, carer and
doctor. While the medical profession certainly has treatments
and alleviations to offer people with schizophrenia, it is
important to remember that the wishes of those diagnosed
with the condition are of great importance. As mentioned
earlier in this booklet, peoples own views of what works for
them, both to keep them well in the long-term and to help
them if a crisis arises must be listened to. Understanding
schizophrenia and finding the best ways to deal with it will
only be achieved by taking peoples experiences and wishes
seriously.

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Where to get further help

Carers National Association
20-25 Glasshouse Yard
London EC1A 4JS
Helpline: 0808 808 7777
General office: 020 7490 8818

Rethink (formerly National

Schizophrenia Fellowship, NSF)
National Office, 28 Castle Street
Kingston-upon-Thames
Surrey KT1 1SS
Tel: 0845 456 0455
Advice line: 020 8974 6814
(Mon-Fri 10am-3pm)
Website: www.rethink.org

This association has a phone

helpline for carers. It works to
improve recognition and services
for them.

NSF Scotland
Claremont House
130 East Claremont Street
Edinburgh EH7 4LB
Tel: 0131 557 8969
Website: www.nsfscot.org.uk

Hearing Voices Network

91 Oldham Street
Manchester
M4 1LW
Tel: 0161 834 5768
This network has set up self-help
groups to allow people to explore
their experiences of hearing
voices.

NSF Belfast
Wyndhurst
Knockbracken Healthcare Park
Saintfield Road
Belfast BT8 8BH
Tel: 028 9040 2323

MIND (National Association for

Mental Health)
Granta House
15-19 Broadway
Stratford
London E15 4BQ
Tel: 020 8519 2122
Information line:
0845 766 0163
Website: www.mind.org.uk

NSF helps people with severe

mental illness, their families and
carers, through support groups,
publications, and a range of
services including employment
projects and training initiatives,
day care and drop-in centres and
accommodation schemes.

Information; local groups offering

a range of community supports;
legal advice. Mindlink is the
part of the organisation
specifically set up to help mental
health service users.

Voices Forum based at the

Kingston-upon-Thames Rethink
address (above), is run by mental
health service users.

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SANELINE
Tel: 0845 767 8000
Website: www.sane.org.uk

we play a vital role in pioneering

new approaches to prevention
treatment and care. Our work
includes providing easily
accessible information for the
general public, funding research
and community projects and
promoting the development of
good services. We are dependent
on voluntary donations to carry
out these activities.

Mental health helpline; emotional

support and practical information
for sufferers, carers or families of
those with mental health
problems, and for professionals.
Survivors Speak Out (SSO)
34 Osnaburgh Street
London NW1 3ND
Tel: 020 7916 5473

The Samaritans
UK-wide helpline:
Tel: 08457 909090

SSO is a campaigning and

information organisation which
helps psychiatric system
survivors - either groups or
individuals - to have their views
heard.

24 hour helpline offering

emotional support to people in
crisis and in danger of taking their
own lives.
United Kingdom Advocacy
Network (UKAN)
Volserve House
1418 West Bar Green
Sheffield S1 2DA
Tel: 0114 272 8171

The Mental Health Foundation

(MHF)
83 Victoria Street
London SW1H 0HW
Tel: 020 7802 0300
MHF Scotland
30 George Square
Glasgow
Scotland G2 1EG
Tel: 0141 572 0125

UKAN is a network of user-led

groups involved in patient
advocacy and planning services.
It also gives advice to other user
groups, giving them examples of
good practice, and acts nationally
as an information sharing service
across all levels of the psychiatric
services.

This booklet has been produced

by the Mental Health Foundation
(MHF). The MHF is the only
charity in the UK concerned with
all aspects of mental health,
including mental illness and
learning disabilities, and as such

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Further reading about schizophrenia

The following list is intended as a guide to seeking further information
and the MHF does not necessarily endorse or support the content of
the publications listed.

General reading
A S.T.E.P. Forward - A guide for people working with schizophrenia
sufferers and their families
Ian Hughes & Joy Abbati-Yeoman, Shadowfax, 1995. 5.95.
Coping with Schizophrenia
Steven Jones & Frank Tallis, Sheldon Press, 1994. 5.99
Not on Your Own
Sally Burningham, Penguin, 1989. 5.99.
A to Z of Social Security Benefits
Catherine Grimshaw, MIND Publications, 1997. 2.50.
A to Z of your Rights under the NHS and Community Care
Legislation
Catherine Grimshaw, MIND Publications, 1993. 2.50.

The Schizophrenia debate

Journal of Mental Health
Volume 2, Number 3, September 1993.
Schizophrenia: A Scientific Delusion?
Mary Boyle, Routledge, 1990. 13.99.

Mental Health Foundation publications

Knowing Our Own Minds: A survey of how people in distress take
control of their lives
Mental Health Foundation, 1997. 15.00 (7.00 to mental health
service users).
Fundamental Facts of Mental Illness
Mental Health Foundation, 1993. 4.50.
A full list of MHF publications can obtained from our Publications
Office, Tel: 020 7802 0304.

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As the UKs only charity concerned with both mental health and
learning disabilities, the Mental Health Foundation plays a vital
role in pioneering new approaches to prevention, treatment and
care. The Foundations work includes: allocating grants for
research and community projects, contributing to public
debate, educating and influencing policy makers and health
care professionals.