Schizophrenia

Overview

• Schizophrenia is a mental illness that affects the way you think, feel and behave. It affects about 1 in every 100 people.
• Schizophrenia may develop during early adulthood. There are different types of schizophrenia.
• You may experience ‘positive’ and ‘negative’ symptoms of schizophrenia.
• Positive symptoms are when you experience things in addition to reality. For example, you might see or hear things that others do not. Or believe things that other people don’t.
• Negative symptoms are when you lose the ability to do something. For example, losing motivation to do things or becoming withdrawn. They often last longer than positive symptoms.
• Professionals aren’t sure of what causes schizophrenia. There are many different causes. The main factors that can contribute towards the development of schizophrenia are believed to be genetics and the environment.
• There are different types of treatment available for schizophrenia, such as medication and psychological treatments.

About

What is schizophrenia?

Schizophrenia is a serious mental illness which affects the way you think, feel and behave. The symptoms may affect how you cope with day to day life.

You could be diagnosed with schizophrenia if you experience some of the following symptoms.

• Hallucinations
• Delusions
• Disorganised thinking
• Lack of motivation
• Slow movement
• Change in sleep patterns
• Poor grooming or hygiene
• Changes in body language and emotions
• Less interest in social activities
• Low sex drive

Everyone’s experience of schizophrenia is different. Not everyone with schizophrenia will experience all these symptoms.

According to the Royal College of Psychiatrists, schizophrenia affects around 1 in 100 people. For some people, schizophrenia can develop during young adulthood and develop slowly.

The early stage of the illness is called ‘the prodromal phase’. During this phase your sleep, emotions, motivation, communication and ability to think clearly may change.

We have created a video called ‘what is schizophrenia?’ You can watch this video by clicking on the following link:
www.youtube.com/watch?v=J1s4YCloCbo

What is psychosis, and how is it related to schizophrenia?
Psychosis is a medical term. If you live with psychosis, you will process the world around you differently to other people. This can include how you experience, believe or view things.

Experiencing psychosis is usually part of schizophrenia. People who live with other mental health conditions can experience psychosis too.

See our webpage on Psychosis for more information.

What myths are there about schizophrenia?

There are some myths or mistaken beliefs about schizophrenia which come from the media. For example,

• ‘Schizophrenia means someone has a split personality’

This is not the case. The mistake may come from the fact that the name 'schizophrenia' comes from 2 Greek words meaning 'split' and 'mind'.

• ‘If you live with schizophrenia, you can’t work’

Many people who live with schizophrenia can work, either full or part time. Especially if their condition is stable and they have right support. Those who live with schizophrenia are often keen to work and play an active role in society. Work can be a key element in recovery.

• ‘People who live with schizophrenia are dangerous’

Those who live with schizophrenia aren’t usually dangerous. People who live with schizophrenia are far more likely to be harmed by other people than harm others.

There is a higher risk of violent behaviour from those who live with schizophrenia. But, as with people who don’t live with schizophrenia, much of the risk is linked to the use of street drugs or alcohol.

Sometimes people who live with schizophrenia commit violent crimes. The media often report them in a way which emphasises the person’s mental health diagnosis. This can create fear and stigma in the general public. But it should be remembered that:

• violent crimes are also committed by people who don’t live with schizophrenia,
• it’s often later found that the person was failed or neglected by the mental health system, and
• the crime might have been prevented if the person had received the care and support they needed.

So, it’s not right to say that schizophrenia equals dangerous.

Diagnosis, symptoms & causes

What are the symptoms of schizophrenia and how is it diagnosed?

How is schizophrenia diagnosed?

Only a psychiatrist can diagnose you with schizophrenia.

You’ll need to meet with them for an assessment. You may have to see the psychiatrist a few times before they diagnose you. This is because they need to see how often you are experiencing symptoms.

There are currently no blood tests or scans that can prove if you have schizophrenia.

During the assessment your psychiatrist will talk to you about your mental health. They will ask you questions. The conversation might cover:

• your symptoms and experiences,
• your feelings, thoughts, and actions,
• your physical health and wellbeing,
• social and family relationships,
• use of drugs or alcohol, and
• past experiences, including similar problems,

The assessment isn’t a test or an exam. It is about find the right diagnosis and help for you. The more open and honest you are, the easier it will be for the psychiatrist. It will help them to reach the right diagnosis and offer you the right treatment and support.

Once your psychiatrist has assessed you, they might think you are living with schizophrenia. If they do, they will use a manual to help with the diagnosis.

The 2 main manuals used by medical professionals are the:

• International Classification of Diseases (ICD-11) which is produced by the World Health Organisation (WHO), and
• Diagnostic and Statistical Manual (DSM-5) which is produced by the American Psychiatric Association (APA).

The manuals explain which symptoms should be present, and for how long for you to receive a diagnosis.

What is the future of diagnosis in schizophrenia?
There are many research studies being conducted across the world on how to better diagnose schizophrenia. For example, a recent study found through looking at images of the brain, there may be different sub-types of schizophrenia.

In the future, brain scans and other tools may be used to diagnose different types of schizophrenia. This will hopefully allow people who live with schizophrenia to receive more personalised treatments. But these approaches are still being developed.

What are the symptoms of schizophrenia?

The symptoms of schizophrenia are commonly described as ‘positive’ symptoms or ‘negative’ symptoms. This doesn’t mean that they are good or bad.

• Positive’ symptoms are unusual changes in thoughts and feelings that are ‘added on’ to a person's experiences. They are usually called ‘psychotic symptoms’ or ‘psychosis’. Experiencing psychosis is usually part of schizophrenia.
• ‘Negative’ symptoms are a lack of feelings that people normally have.

Both types of symptoms can affect your ability to function.

The negative symptoms of schizophrenia can often appear several years before somebody experiences their first episode of psychosis.

A diagnosis of schizophrenia does not mean that you will experience all types of symptoms. The way that your illness affects you will depend on the type of schizophrenia that you have. For example, not everyone with schizophrenia will experience hallucinations or delusions.

What are the ‘positive symptoms’ of schizophrenia?

The term ‘positive symptoms’ is used to describe symptoms that are experienced in addition to reality . These symptoms can also happen in other mental illnesses. They are usually called ‘psychotic symptoms’ or ‘psychosis’.

The following are some examples of positive symptoms.

• Hallucinations
• Delusions
• Muddled thinking

What are hallucinations?
These are when you see, smell, hear or feel things that other people don’t. For example:

• hearing voices,
• seeing things which other people don’t see,
• feeling someone touching you who is not there, or
• smelling things which other people cannot.

Hearing voices or other sounds is the most common hallucination. It can different for everyone. For example, voices may be:

• female or male,
• someone you know or someone you’ve never heard,
• sounds such as humming,
• in a different language or different accent to your own,
• whispering or shouting, or
• negative and disturbing.

You might hear voices sometimes or all of the time.

What are delusions?
These are beliefs that are not based on reality, even though they feel real to you. Other people are likely to disagree with your beliefs. A delusion is not the same as holding a religious or spiritual belief which others don’t share. For example, you may believe:

• that you are being followed by secret agents or members of the public,
• that people are out to get you or trying to kill you. This can be strangers or people you know,
• that something has been planted in your brain to monitor your thoughts,
• you have special powers, are on a special mission or in some cases that you are a god,
• your food or water is being poisoned, or
• you’re being controlled and your thoughts are not yours and someone else has put them into your mind.

You may not always find these experiences distressing, although people often do. You may be able to stay in work and function well even if you have these experiences.

What is muddled thinking?
If you experience muddled thinking, you find it harder to concentrate. This might make it more difficult to do things like work, study, read or watch TV.

You might find it difficult to join up your thoughts and they might drift off.

Your thoughts might jump about, might lead you to start talking quickly or slowly. Things you say might not make sense to other people. You may switch topics, or your words may become jumbled, making conversations difficult for other people to understand.

This is sometimes known as ‘word salad’.

What are the ‘negative symptoms’ of schizophrenia?

The term ‘negative symptoms’ is used to describe symptoms that involve loss of ability and enjoyment in life.

The following are some examples of negative symptoms. ,

• Lack of motivation
• Losing interest in life and activities
• Problems concentrating
• Not wanting to leave your house
• Changes to your sleeping patterns
• Not wanting to have conversations with people
• Feeling uncomfortable with people
• Feeling that you haven’t got anything to say
• Losing your normal thoughts and feelings
• No energy
• Poor grooming or hygiene

What is cognitive impairment?
Cognitive impairment is another type of ‘negative symptom’. Cognitive impairment is when you have problems with things like:

• remembering things,
• learning new things,
• concentrating,
• making decisions.

For more information see our webpages on the following:

• Psychosis
• Hearing voices

What are the types of schizophrenia?

There are different types of schizophrenia. The International Classification of Diseases (ICD-11) manual describes them as below.

Schizophrenia with paranoia

• Common form of schizophrenia.
• Prominent hallucinations, particularly hallucinations where you hear voices or sounds.
• Prominent delusions.
• Speech and emotions may be unaffected.

Hebephrenic schizophrenia

• Irresponsible and unpredictable behaviour.
• Prominent disorganised thoughts.
• Problems with speech.
• Self-isolation.
• Pranks, giggling and health complaints.
• Usually diagnosed in adolescents or young adults.

Catatonic schizophrenia

• Rarer than other types.
• Unusual movements, often switching between being very active and very still.
• You may not talk at all.

Simple schizophrenia

• Negative symptoms are prominent early and get worse quickly.
• Positive symptoms are rare.

Residual schizophrenia

This type of schizophrenia is diagnosed in the later stages of schizophrenia. You may be diagnosed with this if you have a history of schizophrenia but only continue to experience negative symptoms.

Schizophreniform

Schizophreniform disorder is a type of psychotic illness with symptoms similar to those of schizophrenia. But symptoms last for a short period.

Unspecified schizophrenia

Symptoms meet the general conditions for a diagnosis, but do not fit in to any of the above categories.

What can cause schizophrenia?

Nobody knows exactly what causes schizophrenia. It is likely to be the result of several factors, such as:

• Stress. Some people can develop the illness as a result of a stressful event, such as the death of a loved one or the loss of a job.
• Genetics. You are more likely to develop schizophrenia if you have a close relative who has lived with the illness.
• Brain damage. This is usually damage that has stopped your brain from growing normally when your mother was pregnant, or during birth.
• Drugs and alcohol. Research has shown that stronger forms of cannabis increase your risk of developing schizophrenia.
• A difficult childhood. If you were deprived, or abused, as a child this can increase your risk of developing a mental illness. This includes schizophrenia.

There is research to suggest that may be an association between menopause and schizophrenia. This may be due to the hormonal changes during this stage of life for women.

For more information see our webpages on the following:

• Does mental illness run in families?
• Drugs, alcohol, and mental health
• Cannabis and mental health

Treatment & self care

How is schizophrenia treated?

There are different types of treatment available. Medical professionals should work with you to find the right treatment for you.

The National Institute for Health and Care Excellence (NICE) recommends that you should be offered a combination of medication and talking therapies.

People who live with schizophrenia can respond to treatment differently. For many treatment helps to reduce symptoms to help make daily life easier. You may find that you need to continue with treatment to keep well.

On average, for every 5 people with schizophrenia:

• 1 will get better within 5 years of their first obvious symptoms.
• 3 will get better but will have times when they get worse again.
• 1 will have troublesome symptoms for long periods of time.

What medication should I be offered?

Your doctor may offer you medication known as an ‘antipsychotic’. These reduce the symptoms of schizophrenia, but don’t cure the illness.

Your healthcare professionals should work with you to help choose a medication. If you want, your carer can also help you make the decision. Doctors should explain the benefits and side effects of each drug.

Antipsychotic medication can come as tablets, a syrup or as an injection. The injections are called a depot. You may find a depot useful if you struggle to remember to take your medication, or might take too much.

Your doctor should take your views into account when prescribing you medication.

Your medication should be reviewed at least once a year.

Some older type antipsychotics had bad negative side effects. Some people find that the side effects of newer antipsychotic drugs are easier to manage.

You might have been on an antipsychotic for a few weeks and find the side effects too difficult to cope with. You can ask your doctor about trying a different one.

NICE guidelines state that people who have not responded to at least 2 other antipsychotic drugs should be offered clozapine.

For more information see our webpages on the following:

• Antipsychotics, and
• Medication – Choice and managing problems

What type of psychosocial treatment should I be offered?

Your doctor should offer you psychosocial treatments. These treatments help you to look at how your thoughts and behaviour are influenced by the people and society you live in. This can include the following.

What is cognitive behavioural therapy for psychosis (CBTp)?
NICE says the NHS should offer cognitive behavioural therapy for psychosis (CBTp) to all adults with psychosis or schizophrenia. CBTp does not get rid of your symptoms. CBTp can help you to manage your feelings and symptoms better.

What is family intervention?
NICE recommend family members of people who live with psychosis and schizophrenia should be offered family intervention. This can help to improve how you feel about family relationships. This can help reduce any problems in the family caused by your symptoms.

Family intervention is where you and your family work with mental health professionals to help to manage relationships.

It should be offered to people who you live with or who you are in close contact with. The support that you and your family are given will depend on what problems there are and what preferences you all have. This could be group family sessions or individual sessions.

Your family should get support for 3 months to 1 year and should have at least 10 planned sessions.

Family intervention could be to,

• learn more about your symptoms, and
• improve communication among family members.

Family intervention could help you and your family to:

• learn more about your symptoms,
• understand what is happening to you,
• improve communication with each other,
• know how to support each other,
• think positively,
• become more independent,
• be able to solve problems with each other,
• know how to manage a crisis, and
• improve mental wellbeing.

What is psychoeducation?
This involves learning about your illness, your treatment and how to spot early signs of becoming unwell again. It can prevent you having a relapse. Psychoeducation may also be helpful for anyone who is supporting you, such as family, a partner or a trusted colleague.

What are arts therapies?
In arts therapies you do art activities in therapy sessions with help from a trained professional.

People can benefit from the sessions of any age and art skill level or experience.

They therapy session can be one-to-one or in a group. They can help you express your feelings and thoughts and help you to look at things in different ways. This can help to reduce the negative symptoms of the illness.

See our webpage on Talking treatments for more information.

NHS early intervention teams

Early intervention teams are specialist NHS services which provide treatment and support for people when they first experience psychosis and schizophrenia.

They are usually made up of psychiatrists, psychologists, mental health nurses, social workers and support workers.

Your doctor should refer you to an NHS early intervention team if they think you’re experiencing a first episode of psychosis.

NICE suggests that you should start treatment within 2 weeks of referral.

See our webpage on NHS mental health teams for more information.

What if I am not happy with my treatment?

If you are not happy with your treatment you can:

• talk to your doctor about your treatment options,
• ask for a second opinion,
• get an advocate to help you speak to your doctor,
• contact Patient Advice and Liaison Service (PALS) and see whether they can help, or
• make a complaint.

There is more information about these options below.

Treatment options

You can speak to your doctor about your treatment. Explain why you are not happy with it. You could ask what other treatments you could try.

Tell your doctor if there is a type of treatment that you would like to try. Doctors should listen to your preference. If you are not given this treatment, ask your doctor to explain why it is not suitable for you.

Second opinion

A second opinion means that you would like a different doctor to give their opinion about what treatment you should have. You can also ask for a second opinion if you disagree with your diagnosis.

You don’t have a right to a second opinion. But your doctor should listen to your reason for wanting a second opinion.

See our webpage on Second opinions - About your mental health diagnosis or treatment for more information.

Advocacy

An advocate is someone independent from the NHS. They can help to make your voice heard when you are trying to resolve problems. Advocacy services are usually free to use.

There are different types of advocacy services. The types that might be of use to you in this situation are.

• NHS complaints advocacy. This service can help if you want to complain about the NHS. It’s a statutory service, which means that there has to be a service in your area.
• Community or mental health advocacy. This service could help if you don’t want to make a formal complaint about the situation. But you want help dealing with professionals in the NHS about your second opinion. This isn’t a statutory service, meaning it isn’t available in every area of England.

To find your local NHS complaints advocacy service you can:

• search on the internet – type in ‘NHS complaints advocacy service [city/ county/ London borough]’,
• call NHS 111,
• ask your local NHS Trust or look on their website, or
• ask your local Patient Advice and Liaison Service (PALS). You can search for your local PALS service at www.nhs.uk/Service-Search/Patient-advice-and-liaison-services-(PALS)/LocationSearch/363

To find your local community or mental health advocacy service you can try the following.

• Search on the internet – type in ‘advocacy in [city/ county/ London borough]’.
• Contact your local NHS complaints advocacy service to ask if they know of any community or mental health advocacy in your area.

See our webpage on Advocacy for more information.

The Patient Advice and Liaison Service (PALS)

You could talk to your local Patient Advice and Liaison Service (PALS). The NHS say that PALS are there to help patients resolve problems with care and treatment.

You could ask PALS if there is a local policy on second opinions. If there is, you can then mention the policy when asking your doctor to reconsider.

You can find your local PALS by searching on the NHS Choices website:
www.nhs.uk/service-search/other-services/Patient-advice-and-liaison-services-(PALS)/LocationSearch/363. Or you can call NHS 111 and ask for their contact details.

Complaints

If you still have no success, you can complain using the NHS complaints procedure.

This is where your concerns are investigated in further detail.

You can ask a member of your health team to explain how to make a complaint

You can ask for the complaints procedure of the service you are complaining to.

See our webpage on Complaining about the NHS or social services for more information.

What can I do to manage schizophrenia?

People manage living with schizophrenia differently. You can try different things to find something that works for you.

Support groups

You could join a support group. A support group is where people come together to share information, experiences and give each other support. Hearing about the experiences of others can help you feel understood. This may help you feel less alone and boost your self-confidence.

You might be able to find a local group by searching online.

You can search for local mental health support groups below:

• Rethink Mental Illness: www.rethink.org/about-us/our-support-groups
• Local Minds: www.mind.org.uk/about-us/local-minds

Recovery college

Recovery colleges are part of the NHS. They offer free courses about mental health to help you manage your experiences.

They can help you to take control of your life and become an expert in your own wellbeing and recovery. You can usually self-refer to a recovery college.

Unfortunately, recovery colleges are not available in all areas. To see if there is a recovery college in your area you can use a search on the internet.

Peer support through the NHS

Your doctor may offer you peer support with someone who has lived experience of psychosis, and who are now in recovery. They should be able to offer advice and support with:

• side effects,
• recognising and coping with symptoms,
• what to do in a crisis,
• meeting other people who can support you, and recovery.

Self-management techniques

Managing your condition on your own is called self-help. Health professionals may offer you help to manage your condition on your own. They may call this a self-management programme.

You can try some of the suggestions below to manage or cope with upsetting experiences:

• Speak to a supportive, friend, family member or someone else who lives with schizophrenia or has experienced psychosis
• Do things that you find relaxing such as having a bath or listening to music
• Try to stick to a sleep pattern, eat well and look after yourself
• Set small goals such as going out every day and rewarding yourself when you achieve a goal
• Try a complementary therapy such as meditation, massage, reflexology or aromatherapy
• Do regular exercise such as walking, swimming, yoga or cycling
• Try relaxation techniques, mindfulness and breathing exercises

You can read more about the following things by clicking the links:

• Practise mindfulness and meditation: www.mindful.org/meditation/mindfulness-getting-started
• Eat healthy foods and have a balanced diet: www.nhs.uk/live-well/eat-well
• Keeping physically active: www.weareundefeatable.co.uk and www.rethink.org/advice-and-information/living-with-mental-illness/wellbeing-physical-health/physical-activity-and-mental-health
• Have enough sleep. www.rethink.org/advice-and-information/living-with-mental-illness/wellbeing-physical-health/how-can-i-improve-my-sleep
• Avoiding alcohol, drinking only moderately or cutting down: www.rethink.org/advice-and-information/about-mental-illness/learn-more-about-conditions/drugs-alcohol-and-mental-health
• Avoiding smoking or cutting down: www.rethink.org/advice-and-information/living-with-mental-illness/wellbeing-physical-health/smoking-and-mental-health
• Wellbeing and physical health. www.rethink.org/advice-and-information/living-with-mental-illness/wellbeing-physical-health

For more information see our webpages on the following:

• Recovery
• Hearing voices
• Psychosis
• Complementary and alternative treatments for mental health

Recovery

Is it possible to recover from schizophrenia?

Many people who live with schizophrenia have recovery journeys that lead them to live meaningful lives.

Recovery can be thought of in terms of:

• clinical recovery, and
• personal recovery.

What is clinical recovery?

Your doctor might have talked to you about ‘recovery’. Some doctors and health professionals think of recovery as:

• no longer having mental illness symptoms, or
• where your symptoms are controlled by treatment to such a degree that they are not a big problem.

Sometimes this is called ‘clinical recovery’.

Everyone’s experience of clinical recovery is different.

• Some people completely recover from schizophrenia and go on to be symptom free.
• Some who live with schizophrenia can improve a great deal with ongoing treatment.
• Some improve with treatment but need ongoing support from NHS mental health teams and social services.

What is personal recovery?

Dealing with symptoms is important to a lot of people. But some people think that recovery is wider than this. We call this ‘personal recovery.’

Personal recovery means that you can live a meaningful life.

What you think of as being a meaningful life might be different to how other people see it. You can think about what you would like to do to live a meaningful life and work towards that goal.

Below are some ways you can think of recovery.

• Taking steps to get closer to where you would like to be. For example, you may want a better social life.
• Building hope for the future. You could change your goals, skills, roles or outlook.

For many, recovery is an ongoing process.

What can help me recover?

You may want to think about the following questions.

• What do I want to achieve by this time next year?
• How can I do it?
• Do I need support to do it?
• Who can support me?

The following things can be important in recovery.

• Hope. You might find it helpful to read stories from people about their recovery or to join a support group.
• Acceptance. It can be helpful to accept your illness but also to focus on the things you can do. It helps to have realistic goals.
• Control. It might help you be more in control of things in your life, like treatment or support options.
• Stability. Having a stable housing and financial situation can play a big part in recovery. You might need to get help with these things.
• Relationships. Contact with people can help you to stay well.
• Treatment. The right treatment can help to start and maintain recovery.
• Lifestyle. Things like sleep, exercise, diet, and routine can be important.
• Being active. New activities can help you to learn new skills and meet new people. This might include working, studying, volunteering, or doing things like gardening or joining a club.

See our webpage on Recovery and mental illness for more information.

Sometimes it can be helpful to hear other people’s recovery stories.

Risks

What risks and complications can schizophrenia cause?

Physical health

Research suggests that people with serious mental illness, such as schizophrenia, have a shorter life expectancy. People with mental illness may die 15 to 20 years earlier than the general population.

This may because people who live with serious mental illness are at higher risk of having a range of health issues. This includes being overweight, having heart disease, smoking and diabetes.

Because of these issues when you start taking antipsychotic medication, your doctor should do a full range of physical health checks. This should include weight, blood pressure and other blood tests. These checks should be repeated regularly.

Mental health professionals are responsible for doing these checks for the first year of treatment. Responsibility may then pass to your GP.

You can read more about ‘Severe mental illness and physical health checks’ here: www.rethink.org/advice-and-information/living-with-mental-illness/wellbeing-physical-health/severe-mental-illness-and-physical-health-checks

Your doctor or mental health team should offer you a programme which combines healthy eating and physical health checks. You should be supported by a healthcare professional to help stop smoking.

Problems with alcohol and drug use

Researchers have found that people and live with schizophrenia can have serious problems with drug or alcohol use. Also, more likely to smoke tobacco than the general population.

See our webpage on Drugs, alcohol and mental health for more information.

You read our information and advice on ‘Smoking and mental health’ here: www.rethink.org/advice-and-information/living-with-mental-illness/wellbeing-physical-health/smoking-and-mental-health

Suicide

The risk of suicide is increased for people with schizophrenia. Research indicates that around 5–13% of people who live with schizophrenia die by suicide.

Key risk factors for suicide include:

• previous suicide attempts,
• feelings of hopelessness,
• depressive symptoms,
• family history of psychiatric illness,
• physical health issues associated to schizophrenia,
• not having treatment,
• younger age,
• alcohol and drug use,
• family history of depression,
• family history of suicide, and
• not using treatment.

See our webpage on Suicidal thoughts – How to cope for more information.

Carers, friends & family

What if I am a carer, friend or relative?

It can be sometimes be challenging if you are a carer or loved one of someone who lives with schizophrenia. But you can get support.

How can I get support for myself?

You can do the following.

• Speak to your GP about medication and talking therapies for yourself.
• Speak to your relative’s care team about family intervention. For more information about family intervention see the previous section above.
• Speak to your relative’s care team about a carer’s assessment.
• Ask for a carers assessment.
• Join a carers service. They are free and available in most areas.
• Join a carers support group for emotional and practical support. Or set up your own.

For more information see our webpages on the following:

• Stress – How to cope
• GPs - What to expect from your doctor
• Talking therapies

What is a carers assessment?
Giving care and support to someone can have an impact on your life. It can affect your mental and physical health. You may feel tired overwhelmed or find it hard to stay in employment or take part in social activities.

If your role as carer has an impact on your wellbeing, you may be able to get funding or services from your local authority (LA). They will look at what services you need by carrying out a carer’s assessment.

See our webpage on Carers’ assessment: Under the Care Act 2014 for more information.

How can I find carers services and support groups?
You can get peer support through carer support services or carers groups. You can search for carer support groups on the following websites:

• Rethink Mental Illness: www.rethink.org
• Carers UK: www.carersuk.org, and
• Carers Trust: www.carers.org/search/network-partners.

How can I support the person I care for?

You can do the following.

• Read information about schizophrenia, hearing voices or psychosis.
• Ask the person you support to tell you what their symptoms are and if they have any self-management techniques that you could help them with.
• Encourage them to see a GP or their NHS mental health team if you are worried about their mental health.
• Ask to see a copy of their care plan. They should have a care plan if they are supported by a NHS mental health team.
• Help them to manage their finances.

For more information see our webpages on the following:

• Supporting someone with a mental illness
• Getting help for someone in a mental health crisis
• Suicidal thoughts - How to support someone
• Responding to unusual thoughts and behaviours linked to mental illness
• Confidentiality and information sharing - For carers, friends and family
• Worried about someone’s mental health?
• Hearing voices
• Psychosis

Further reading

At Rethink Mental Illness, we have done some reports into severe mental illness. You can read more about this here: www.rethink.org/aboutus/who-we-are/the-schizophrenia-commission

Eleanor Longden – The voices in my head
This video tells Eleanor’s story about the voices she hears. She talks about her journey back to better mental health. She makes the case that by learning to listen to her voices she was able to survive.

Website: www.ted.com/talks/eleanor_longden_the_voices_in_my_head

The BBC – Why do people hear voices in their heads?
This BBC radio programme looks at what causes people to hear voices. You can listen to it online or download it.

Website: www.bbc.co.uk/programmes/w3csvtc3

Understanding Voices
A website produced by Durham University together with mental health professionals, voice-hearers and their families. The website aims to make it easier for people to find information about different approaches to voice-hearing. It includes ways of supporting those who are struggling with the voices they hear.

Website: www.understandingvoices.com/

Me and My Mind
A website produced by the South London and Maudsley (SLaM) NHS Foundation Trust. The service is for young people in the SLaM area. But there is lots of useful information on the website and resources you can download.

Website: www.meandmymind.nhs.uk

Avatar Therapy
Researchers have been looking into how computer-based treatment may help with hearing voices. This treatment is known as avatar therapy. Avatar therapy is not available on the NHS at the moment.

In this therapy you create a computer-generated face with a voice which is like a voice you hear. This is called an ‘avatar’. You work with a therapist to talk to the avatar and gain more control over the voice you hear.

Results show that this therapy is helpful for some people. But there is more research taking place.

Avatar Therapy UCL webpage: www.phon.ucl.ac.uk/project/avtherapy

Caring for someone with psychosis or schizophrenia
This is a free, online course provided by Kings College in London. It is aimed at people who care for people who live with psychosis or schizophrenia.

Website: www.futurelearn.com/courses/caring-psychosis-schizophrenia

NHS self-help guide - Hearing voices and disturbing beliefs
This booklet is for people who experience voices or disturbing beliefs. It has been produced by a group who have personal experience of hearing voices and disturbing beliefs. It incudes information as well as space to write in your own experiences.

Website: www.web.ntw.nhs.uk/selfhelp

Useful contacts

The Royal College of Psychiatrists
Their website has reliable information about different mental illnesses.

Telephone: 020 7235 2351
Email through online form: www.rcpsych.ac.uk/about-us/contact-us
Website: www.rcpsych.ac.uk

The Hearing Voices Network (HVN)
HVN are a charity. They give information, support and understanding to people who hear voices and those who support them. They also support people who have visual hallucinations and people who have tactile sensations. They have a list of self-help groups across the country.

Email: info@hearing-voices.org
Website: www.hearing-voices.org

Intervoice
Intervoice are a charity. They encourage people all over the world to share ideas through their online community. You can also find information about hearing voices through their articles and resources.

Email: info@intervoiceonline.org
Website: www.intervoiceonline.org

© Rethink Mental Illness 2023

Last updated February 2023
Next update April 2023

Version number 10.3

You can access a fully referenced version of this information by downloading the PDF factsheet by using the link at the top of this page.

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