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Schizophrenia is a psychiatric diagnosis about which there is much
disagreement. There are a number of theories as to diagnosis, cause
and treatment. The aim of this leaflet is to provide a range of
information, as well as some practical advice.
What is schizophrenia?
The diagnosis of
schizophrenia is currently widely used in the mental health system,
and subsequent treatment is based on that diagnosis. The symptoms on
which a psychiatrist will base a diagnosis are divided into what are
termed 'positive' and 'negative' symptoms.
Positive symptoms
Thought disruption. A
person said to be experiencing thought disruption seems unable to
follow a logical sequence of thought - ideas may be jumbled and make
little sense to others.
Auditory hallucinations.
Some people hear voices that others around do not hear. The voices may
be familiar friendly or critical. They might discuss your thoughts or
behaviour, or they might tell you what to do. Hearing voices does not
inevitably mean a label of schizophrenia.
Delusions or
hallucinations. These are defined as beliefs or experiences that are
not shared by others. You might believe, for instance, that you are
being pursued by secret agents or that you are controlled by external
forces that are putting thoughts into your mind.
These 'positive' symptoms
constitute what is described as 'psychosis'. These symptoms are
treated with drugs known as major tranquillizers. Most psychiatrists
equate such symptoms with a psychiatric disorder, but others believe
that such psychological episodes are logical or natural reactions to
adverse life events an extreme form of distress.
Negative symptoms
While the above 'positive'
symptoms may be the most easily identified, there are others
associated with schizophrenia. You might feel apathetic, lacking in
concentration and emotionally flat; you may want to avoid people and
feel you need to protect yourself from them. These are described as
'negative' symptoms.
It is difficult to say
which may be symptoms of schizophrenia, and which are simply reactions
to the ways anyone experiencing mental ill-health may be treated in
this society. People with mental health problems are not generally
treated well, so it is hardly surprising that isolation, depression or
hopelessness can result.
Some people believe that,
because psychiatric experts cannot agree about the definitions, causes
and consequently the treatments for schizophrenia, that it should not
be used as a diagnostic category at all.
Who is diagnosed with schizophrenia?
About one in
100 people may at some point in their lives be diagnosed with
schizophrenia - usually as young adults. This figure is the same for
women and men. You may be more likely to be given this diagnosis if
someone in your family has been. It has been estimated that around a
third of people diagnosed with schizophrenia experience only one
episode. Another third may have further occasional episodes, while a
further third live with schizophrenia as an ongoing problem.
Social and cultural
difference
The holistic approach to
schizophrenia stresses the need to look at individual experience, and
the importance of understanding what the voices or hallucinations mean
to the individual. Hearing voices, for instance, holds a different
significance within different cultures and spiritual belief systems.
Misdiagnosis can occur when a psychiatrist has very different
cultural, religious or social experiences to a patient. For example
there is considerable concern in Britain about the disproportionately
high number of young African-Caribbean men given this diagnosis, which
has led some experts to question whether the entire theory of
schizophrenia is based on racist ideologies (see 'Debating
schizophrenia' OpenMind 87, Further reading).
Are people diagnosed with
schizophrenia dangerous?
The popular
myth about schizophrenia is that you have a 'split personality' and
swing between being calm and being out of control. It is probably the
psychiatric diagnosis about which there is the most media
misinformation. We are all aware of sensational stories about
'schizophrenics' who are dangerous unless drugged and kept in
institutions. In fact, the number of homicides committed by people
with any mental illness diagnosis has remained at the same low level
for 10 years. In this same 10-year period the total number of
homicides committed in Britain has considerably increased.
Recent Australian research
(1998) found that people with drug problems (alcohol and illicit
drugs) are twice as likely to commit a violent crime as someone
diagnosed with schizophrenia, and concluded that the relationship
between schizophrenia and serious criminal offending is so tenuous
that prediction of violence is 'virtually impossible'.
What causes
schizophrenia?
It is not easy to identify
the causes of a form of mental distress whose definition is so
contested. The following have been considered as possible causes.
Genes
Genes are the physical
means by which characteristics of biological families are shared.
Researchers have not been able to identify a 'schizophrenia gene'. It
is suggested that while particular genes might make you more
vulnerable to the symptoms described as schizophrenia, this does not
mean you will develop them. Developmental, environmental and
psychological factors are also involved.
Biochemical
Biochemical research has
been centred on dopamine, a naturally-occurring brain chemical, but it
remains unclear whether it has a role in developing schizophrenia.
Despite the absence of a proven link, it is dopamine on which major
tranquillizers are designed to work.
Family experiences
It is generally accepted
that our early experiences of family life impact on the development of
our personalities. There have been theories put forward about 'types'
of family that might contribute to causing schizophrenia, but none
have been proven.
Stressful life events
Studies, and personal
accounts, suggest that schizophrenia can be triggered by stressful
events such as the loss of someone close to you or a change of job.
Other ongoing pressures, for example poverty or homelessness, or
harassment on the grounds of race or sexuality, may also contribute.
Overall, most experts
conclude that schizophrenia is caused by a combination of factors;
someone's genetic make-up could make them more vulnerable, but
stressful events or particular family or life experiences 'trigger'
the onset of symptoms.
Living with
schizophrenia
If you go to your GP with
symptoms of schizophrenia, they are likely to refer you to a
psychiatrist. You may want to go somewhere that feels safe and
undemanding; at present, this means hospital. Unfortunately, these are
not always the safe, comfortable places intended. It can be upsetting
to be around others who are distressed, and the lack of privacy and
support can also be difficult to cope with.
A stay in hospital may,
however, provide the opportunity for you to have your needs assessed
to enable you to live independently. Before leaving there should be a
meeting to plan what services you need, and help you get access to
them. In addition, many hospitals now have service-user or patient
groups which you may find useful and supportive.
Mental health service
users and survivors have campaigned for some years for alternatives to
hospital treatment - in particular for residential crisis support
centres that rely less on drug treatments and offer more in the way of
talking treatments and informal support. There are some independent
crisis services currently in existence. Mind's 'Crisis services'
factsheet gives details (see Further reading).
If you are unwilling to go
into hospital you might be compulsorily admitted under the Mental
Health Act 1983. Mind's series of Rights Guides give information about
your rights under this Act (see Further reading). Your local community
health council (CHC) should also be able to give you information, and
MindinfoLine can refer you to Mind's legal unit for legal advice.
Medication
Major tranquillizers -
also known as neuroleptics or antipsychotics - might be prescribed to
lessen your positive symptoms. These can be administered in tablet,
syrup or injectable form, daily, weekly, fortnightly or monthly.
All major tranquillizers,
to varying degrees, have a sedative effect, which might make it more
difficult to cope with distressing symptoms or to use talking
treatments. They can cause, for instance, trembling hands, stiffening
of muscles, blurred vision or dizziness. Long4erm use can cause
permanent damage to the central nervous system (known as tardive
dyskinesia).
The new antipsychotics,
introduced during the 1990s, include clozapine, risperidone,
sertindole, olanzapine, quetiapine and amisulpide. These seem to have
fewer side-effects, as well as some effect on negative symptoms. Other
antipsychotics, which have been widely used for the last 30 years,
include chlorpromazine (brand name Largactil) and haloperidol; these
do not seem to have any beneficial effect on negative symptoms and
often have adverse side-effects, some of which are severe and
long-term.
There is now significant
evidence that maintenance on low doses is more effective in dealing
with symptoms, as well as lessening side-effects. If you are taking
these drugs you should have the dosage reviewed regularly with the aim
of keeping it as low as possible. Advocates based in your hospital, or
local mental health groups including Mind, can also offer support and
advice about coping with these drugs, and alternatives to them. See
Mind's Making Sense of Treatments and Drugs: Major Tranquillizers,
and Mind's Briefings on major tranquillizers for more
information (Further reading).
Community care
Everyone referred to
psychiatric services in England should have their needs assessed and
care planned within the Care Programme Approach (CPA). This should
provide you with an assessment of your social and health care needs, a
care plan, a keyworker and regular review. You are entitled to say
what your needs are, and have the right to have an advocate present.
The assessment might also include carers and relatives. The same
system effectively applies in Wales. (See Mind's 'Brief guide to the
care programme approach', Further reading).
As part of the CPA, or
separately, you can request social services to make an assessment of
your needs for community care services. This covers everything from
daycare services to your housing needs, with the aim of providing
services in your own home or appropriate supported accommodation. You
might need careworkers, and - since many areas have introduced a
charge for services -the cost of services may need to be included in
the needs assessment.
Direct payments
Once your community care
assessment has confirmed your need for services, you may be eligible
to claim direct payments to enable you to purchase the care you need
rather than having it provided by social services. Direct payments
cover such things as employing your own careworker and day centre
charges. Your local social services, or the Centre for Independent
Living (see Useful organizations) should be able to tell you whether
you are eligible.
Community mental health
teams
Often, community care
assessments are made by the community mental health teams to which you
are likely to be referred on leaving hospital. Their aim is to enable
you to live independently. They can help with practical issues such as
sorting out welfare benefits and housing, and other services such as
day centres or drop-in centres. They can also arrange for a community
psychiatric nurse (CPN) to visit you at home; CPNs administer
injections, and may provide other practical help.
What can I do for myself?
There is increasing
awareness that, while drugs may lessen 'positive' symptoms, most have
little or no effect on feelings of isolation, depression, withdrawal
or lack of motivation. You may want therefore to think about trying
coping strategies which other people have found useful. Such
strategies include talking treatments, self-help groups, supported
living environments, getting involved in day centres or employment
projects, volunteering, or changing the way you do paid work.
Accommodation
Supported housing is an
arrangement where help is immediately at hand, both from staff and
other tenants. Levels of support vary between projects, but the role
of all supported housing staff is to enable you to live independently.
Supported housing is provided locally by mental health projects,
including local Mind associations in some areas (see Mind's 'Housing
advice' factsheet, Further reading).
Talking treatments
There are different kinds
of talking treatments, including counselling, psychotherapy and
cognitive behavioural therapy. It can sometimes be difficult to get
access to talking treatments if you cannot afford to pay, but some
local voluntary projects, including local Mind associations, offer
free services. Mind's booklets Understanding Talking Treatments and
Getting the Best from your Counsellor or Therapist, as well as the
'Counselling' and 'Psychotherapy' factsheets may be helpful (Further
reading).
The aim of cognitive
behavioural therapy is to enable you to identify connections between
your thoughts, feelings and behaviour, and to develop practical skills
to manage your thought patterns and feelings to avoid crisis
situations developing. There is considerable evidence to suggest that
this process is particularly useful for those experiencing the
symptoms of schizophrenia. You generally need a referral from your GP
(See Mind's 'Cognitive behaviour therapy' factsheet, Further reading).
Self-help groups
It can be useful to share
experiences and ways of coping, to campaign for better services, or
simply to support each other. The Voices Forum is a user-run group of
people who have been diagnosed with schizophrenia, linked with the
National Schizophrenia Fellowship. The Hearing Voices Network is
another self-help group which can advise on strategies for dealing
with hearing voices (see Useful organizations).
Other practical things
you can do
There is no right or wrong
way to feel about either the symptoms, diagnosis or treatment of
schizophrenia. You are likely to have lots of different feelings,
which may change over time. You may feel that you want to cut yourself
off and avoid talking to anyone. However, there are practical things
you could try, which others have found helpful.
Think about how you like
spending your time, and set up a routine to try and include
pleasurable activities, even when it feels particularly difficult. You
may wan to try to avoid situations you find particularly stressful; if
you have a job, you may be able to work shorter hours, or work in a
flexible way to avoid stress. Under the Disability Discrimination Act
1995 employers with more than 15 employees must provide 'reasonable
adjustments' to facilitate the new or ongoing employment of disabled
people, including those with a diagnosis of mental ill-health.
Local voluntary
organizations also run volunteer or employment projects which could
enable you to gain skills, training and experience in a supportive
setting (see Mind's 'Employment' factsheet, Further reading).
What can partners,
friends or relatives do to help?
It can be very shocking
when someone you are close to experiences the symptoms of
schizophrenia. You may be unsure what you should do. Finding out about
the reality of schizophrenia may help - including about different
coping strategies that you might be able to support and encourage your
partner, friend or relative to try.
It may be helpful to
discuss with the person when they are feeling OK what it is they want
from you when and if they do experience a crisis. It can also be
useful to state clearly what you feel you can and can't deal with. A
person experiencing the symptom of schizophrenia wants the same things
we all want: to feel cared about, not to feel alone, and to have
someone with whom to discuss feelings and options. It is very
important to avoid blaming the person or telling them 'to pull
themselves together'.
It is equally important to
avoid blaming yourself, and to get support in coping with your own
feelings, which may include anger, guilt, fear or frustration. There
are a number of voluntary organizations which provide help for carers
(see Useful organizations), and social services are also obliged to
assess your needs for practical and emotional support.
It is not necessary to
agree with what seem to you to be delusions or hallucinations.
Equally, denying them may not very helpful. It is usually more
constructive to focus on the person's feelings, which may make it
easier for you both to communicate constructively.
You might need to provide
practical help. If you do act on the person's behalf, it is important
to consult them and not 'take over'. It may also be possible to find
an independent advocate to act on their behalf. Local mental health
projects, including local Mind associations, may be able to help.
Compulsory hospital
admission
If you feel your loved
one, or others, are at serious risk of harm, it may be necessary to
think about compulsory hospital admission as a last resort. The
'nearest relative' as defined under the Mental Health Act 1983 can
request a Mental Health Assessment from an approved social worker to
look at treatment options and decide whether someone should be
detained. (For more information see Mind's 'Outline guide to the
Mental Health Act', Further reading).
Useful organizations
You should be able to get
information about local mental health services from your GP social
services department, local Mind association, community mental health
team, community health council or council for voluntary services.
Details should be in local telephone directories. Other useful
organizations are listed below.
Carers National
Association
20-25 Glasshouse Yard, London EC1A 4JT
tel. 0171 4908818
Minicom 0171 251 8969
Advice line 0345 573 369
They provide advice and information to carers and campaign on their
behalf.
Hearing Voices Network
c/o Creative Support, Fourways House, 16 Tariff Street, Manchester
Ml 2EP
tel. 0161 228 3896
User network for people who hear voices; provides information about
local support groups as well as about how to cope with voices.
National Centre for
Independent Living
250 Kennington Lane, London SE11 5RD
tel. 0171 587 1663
They provide information and advice on personal assistance and the
development of new schemes. They can also provide information about
direct payments.
The National
Schizophrenia Fellowship (NSF)
28 Castle Street, Kingston upon Thames, Surrey KT1 1SS
tel. 0181 547 3937
Produces information about schizophrenia and campaigns for better
understanding of schizophrenia.
Voices Forum can be
contacted at the NSF London office (above). They can give you contact
numbers for groups in northern England, southern region and Wales.
Further reading
Accepting Voices - A
New Analysis of the Experience of Hearing Voices Outside the Illness
Model
M. Romme & S. Escher (Mind 1993) £13.99
Black People and
Sectioning
D. Browne (Little Rock Publishing 1997) £9.50
Cognitive-Behavioural
Therapy of Schizophrenia
D. Kingdon & D. Turkington (Psychology Press 1994) £12.95
The Cognitive
Neuropsychology of Schizophrenia
C. Frith (Taylor & Francis 1992) £11.95
The Dialectics of
Schizophrenia
R Thomas (FAB 1997) £15.95
Hearing Voices-A Common
Human Experience
J. Watkins (Hill of Content 1998) £7.99
Living with
Schizophrenia - An Holistic Approach to Understanding, Preventing and
Recovering from Negative Symptoms
J. Watkins (Hill of Content 1996) £9
Schizophrenia: The
Positive Perspective - In Search of Dignity for Schizophrenic People
P. Chadwick (Routledge 1997) £15.99
Social Skills Training
for Schizophrenia - A Step-by-Step Guide
A. Bellack et al (Guildford Press 1997) £19.95
The Voice Inside -A
Practical Guide to Coping with Hearing Voices
P. Baker (Handsell Publishing/Mind 1997) £3
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