Frequently asked Q's

• What are the key facts?

  • 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 or believe things that others do not.
  • Negative symptoms are when you lose the ability to do something, or it is affected. For example, losing motivation to do things or becoming withdrawn. They often last longer than positive symptoms.
  • Professionals are not 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
• 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
  • Loss interest in social activities

  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.

  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 can 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 cannot 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 are not 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 do not 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 do not live with schizophrenia,
  • it is 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 is not right to say that schizophrenia equals dangerous.

• 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 in schizophrenia. It can be 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.

  A delusion can happens when:

  • you believe something that others think you’ve misunderstood,
  • you see things in a very different way from everyone else,
  • you have no doubts, but other people see your belief as strange or wrong, mistaken,
  • your explanations of your beliefs don’t make sense to others,
  • your ideas or beliefs can't be explained as part of your background, culture, or religion.

  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. This is sometimes known as ‘word salad’. This can make conversations difficult for other people to understand.

  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
  • Not wanting to leave your home
  • Changes to your sleeping patterns
  • Problems concentrating
  • Not wanting to have conversations with people
  • Feeling that you haven’t got anything to say
  • Losing your normal thoughts and feelings
  • Feeling uncomfortable with people
  • 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
• How is schizophrenia diagnosed?

  Only a psychiatrist can diagnose you with schizophrenia. A psychiatrist is a medical doctor who specialises in mental health.

  There is no single test for schizophrenia and the condition is usually diagnosed after 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.

  You can see your GP if you are worried you might be developing symptoms of schizophrenia. The earlier you get treatment, the better. See the previous section for more information about symptoms of 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 is not a test or an exam. It is about finding 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 experiencing schizophrenia. If they do, they will use a manual to help diagnose you.

  The 2 main manuals usually used by medical professionals in England 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 if I am not diagnosed with schizophrenia but I have some symptoms?

  You might not be diagnosed with schizophrenia, but you might have some of the symptoms for more than one month. You might be diagnosed with something else.

  Depending on your symptoms the kind of things you could be diagnosed with are:

  • schizophreniform disorder,
  • delusional disorder,
  • depressive disorder with psychotic features,
  • bipolar disorder with psychotic features,
  • or other specified or unspecified schizophrenia spectrum
  • and other psychotic disorder.

  Doctors would also want to make sure that your symptoms are not being caused by things like:

  • Other medical conditions. Some medical conditions can lead to brief periods of psychosis.
  • Substance-related disorders. Sometimes, substances like illegal drugs can trigger symptoms of psychosis or delirium.
  • Depressive and bipolar disorders. Sometimes symptoms of psychosis are linked to a mood episode caused by these disorders.
  • A personality disorder. Sometimes people who live with personality disorders can experience brief periods of psychosis.
• 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.
  • Dysfunction of the immune system. For some people the dysfunction of the immune system could play a role in the development of schizophrenia.
  • Menopause. 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
  • Menopause and mental health
• 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 treatments to the NHS. They recommend that you should be offered a combination of medication and talking therapies.

  You can access the NICE guidelines on Psychosis and schizophrenia in adults: prevention and management.

  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 help to reduce the symptoms of schizophrenia.

  Your healthcare professionals should give you advice on your medication options. 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 medication should be reviewed at least once a year.

  Some people find the side effects of newer antipsychotics drugs are easier to manage than the older types of the medication.

  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 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.

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

  Family intervention should:

  • include you, if practical,
  • be carried out for between 3 months and 1 year,
  • include at least 10 planned sessions,
  • take account of the whole family's preferences,
  • take account of the relationship between you and your main carer,
  • have a specific supportive, educational or treatment function, and
  • include negotiated problem solving or crisis management work.

  Family intervention can help to improve how you feel about family relationships.

  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.

  The therapy sessions 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 therapies for more information.

  What are NHS early intervention teams?

  These teams are specialist services. They provide treatment and support for people who first experience symptoms of 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. Also, you can usually refer yourself to your local team. Your carer or a loved one might also be able to refer you.

  You should be able to find details of your local team by searching the internet using the area where you live followed by ‘NHS early intervention team’.

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

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

• Is it possible to recover from schizophrenia?

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

  Everyone’s experience of 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. This can be from NHS mental health teams, social services, family, charities, or other organisations.

  Recovery can be thought of in terms of:

  • clinical recovery, and
  • personal recovery.

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

  Rethink Mental Illness have written reports on severe mental illness. 

• What if I am not happy with my care or treatment?

  If you are not happy with your care or treatment you can talk to your healthcare professional about your concerns.

  If you are still not happy you can:

  • ask for a second opinion,
  • try to get an advocate,
  • contact Patient Advice and Liaison Service (PALS), or
  • make a complaint.

  For more information see our webpages on the following:

  • Second opinions - About your mental health diagnosis or treatment
  • Advocacy for mental health - Making your voice heard
  • Complaining about the NHS or social services

   

• 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
  • Local Minds

  NHS 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.

  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
  • Eat healthy foods and have a balanced diet
  • Keeping physically active 
  • Have enough sleep
  • Avoiding alcohol, drinking only moderately or cutting down
  • Avoiding smoking or cutting down

  For more information see our webpages on the following:

  • Recovery
  • Hearing voices
  • Psychosis
  • Complementary and alternative treatments for mental health
• 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 be 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 here about 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 here on 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.

• What if I am a carer, friend or relative?

  As a carer, friend or family member of someone living with a mental health condition, you might find that you need support.

  How can I get support?

  You can do the following.

  • Arrange carer’s assessment to get extra support.
  • Join a carers’ service or support group.
  • Speak to your GP if your mental health is affecting your day-to-day life.

  How can I arrange a carer’s assessment?

  You can arrange a carer’s assessment if you need support to care for your loved one. Social services may be able to provide you with additional help or a break for you and your loved one.

  See our webpage on Carer’s assessments – Under the Care Act 2014 for more information.

  How can I join a carers’ service or support group?

  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: 
  • Carers UK, and
  • Carers Trust.

  What support can my GP give me?

  Caring for someone with a mental health problem can be challenging. If it is affecting your mental health to the extent that it is affecting your day-to-day life, you can see your GP.

  They can offer you advice and treatment.

  For more information see our webpages on the following:

  • GPs and your mental health
  • Stress – How to cope

  How can I support the person I care for?

  You can do the following.

  • Read information about their condition. This can help you understand more about their symptoms and how they affect them.
  • 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 if you are worried about their mental health. And they’re not been supported by mental health services.
  • Help them to manage their finances.
  • Ask to see a copy of their care plan if they have one. They should have a care plan if they are supported by NHS mental health services.

  You can find information on the Mental Health and Money Advice Website on:

  • Can someone else manage my money for me?

  For more information see our webpages on the following:

  • Supporting someone with a mental illness
  • Getting help for someone in a mental health crisis
  • Respite care - Breaks for carers
  • Suicidal thoughts - How to support someone
  • Responding to unusual behaviour linked to mental illness
  • Confidentiality, information and your loved one - For loved ones of people living with mental illness
  • Worried about someone’s mental health?

  You can find information on the Mental Health and Money Advice Website on:

  • What benefits are available for mental health carers?
• Further reading

  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.

  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.

  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.

  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.

  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.

  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.

  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.

• Useful contacts

  The Hearing Voices Network (HVN)
  HVN 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.

  Intervoice
  A charity that encourages 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.

   

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