Schizophrenia

People who live with schizophrenia can experience extreme differences in the way they perceive the world around them, and can find it difficult to recognise what is real and what is not.

Schizophrenia is not as common as some other mental illnesses, such as depression and anxiety. However, it is not rare. The World Health Organization estimates that schizophrenia affects approximately 1 in 200 adults.

Schizophrenia is most likely to develop between the ages of 20 and 30, though it also develops in younger and older people.

Schizophrenia is more likely to develop later in women than in men. It most commonly develops in women between ages 25 and 35, and in men between ages 15 and 25. 

If you have schizophrenia you might experience some of the following symptoms. It is important to note that you are unlikely to experience these symptoms all of the time. Instead, you are likely to experience different symptoms at different times, and these symptoms will be more or less severe depending on a number of factors.

The symptoms of schizophrenia can be grouped into positive symptoms and negative symptoms.

This can sound confusing, as though positive symptoms are good and negative symptoms are bad. However, positive and negative mean something different in schizophrenia.

Positive symptoms

Positive symptoms in schizophrenia are things that you start doing, or which start happening to you.

Positive symptoms are the symptoms experienced in psychosis, and you can read about these in more detail in our psychosis resource. Examples of positive symptoms include:

• Delusions – Beliefs that are very real to you, but probably won’t be shared by or make sense to other people, such as your friends and family. For example, believing that you are extremely powerful or important, believing that things are connected to you and your life, or believing that you are being watched or followed.
• Hallucinations – Hearing, seeing, feeling, smelling or tasting things that other people cannot. The most common hallucinations are auditory (hearing) hallucinations.
• Disorganised thinking – Thinking and speaking in confused or disjointed ways that don’t make sense to others.
• Believing that you are being influenced or controlled – Believing that someone or something is controlling your thoughts or your actions, putting thoughts into your head or removing thoughts from your mind. Or believing that your thoughts are being broadcast from your mind so that people know what they are.

Negative symptoms

Negative symptoms in schizophrenia are things that you stop doing or experiencing, such as:

• Showing less emotion than you usually do. This might be through your facial expressions, eye contact, body language, or your tone of voice.
• Speaking less than usual or not speaking at all.
• Being unmotivated to do things you usually do or to pursue your goals.
• Being unable to look after yourself like you usually would. For example, no longer washing or feeding yourself properly.
• Feeling that you want to isolate yourself or withdraw from others.
• Being unable to experience pleasure or enjoyment in things you previously enjoyed.

Negative symptoms might be less obvious than positive symptoms, or they might seem like the symptoms of another condition, such as depression. Even though they can be less noticeable to others than positive symptoms, negative symptoms are still extremely difficult for the people experiencing them.

Negative symptoms can also cause challenges with work or family life, as they can be mistaken for deliberate laziness or rudeness.

Finally, if you have schizophrenia you might also experience the following things:

Differences in how you move

• being very restless or agitated
• holding strange postures that would usually be uncomfortable
• staying in the same position, unless moved by someone else, and then staying in the position they moved you into
• appearing to be unconscious, and not reacting to things happening around you.

These are things that happen in catatonia, which is a condition that can happen to people with schizophrenia and other mental illnesses. If you have lots of these symptoms, you might be diagnosed with catatonia as well. Catatonia is extremely serious, and should be treated quickly. You can find out more about this in our catatonia resource.

Significant changes in your level of functioning

You might show behaviour that is disorganised, strange, unpredictable or doesn’t have a clear purpose. You might also have inappropriate emotional responses to things happening around you. This will be very out of character for you.

You do not necessarily need to experience all of these symptoms to be diagnosed with schizophrenia. You might have:

• mostly positive symptoms
• mostly negative symptoms
• or a mixture of both.

To be diagnosed with schizophrenia, you should experience:

• at least two of the positive or negative symptoms described above
• most of the time
• for at least one month.

You will also have significant challenges in your social or work life as a result of your symptoms.

You won’t be diagnosed with schizophrenia if your symptoms are caused by:

• another health condition – for example, a brain tumour
• the effects of a substance or medication – for example, corticosteroids
• withdrawal from a substance or medication – for example, alcohol withdrawal.

Separating delusions from reality

It might be difficult for other people to realise that you are experiencing delusions. This is especially the case if there are things in your life that connect to your delusions, or if your delusions are based on real things. For example:

• Religion - If you are religious, believing that you can speak to God through prayer might be a normal part of your belief system. However, if these beliefs start to become more intense or extreme, or start to impact on your relationships with others, this might be a sign that you are unwell.
• Employment – It might be hard for others to realise you are experiencing delusions if you have a job that is linked to your delusions. For example, if you have had to work with classified information, such as in the Government or the army, and you have delusions about surveillance.
• Personal life – Things might have happened to you in your personal life that led to you being controlled or surveilled. For example, being in an abusive relationship. If you develop delusions that you are being followed or controlled, it might take longer for others to realise that you are unwell.

If you are experiencing delusions, the thoughts and ideas you have will be more extreme than usual, and will probably seem strange or out of character to others.

Psychosis is a term used to describe a cluster of symptoms. People with lots of different conditions can experience symptoms of psychosis, including:

• schizophrenia
• schizoaffective disorder
• bipolar disorder
• severe depression

Other mental health conditions like generalised anxiety disorder or obsessive-compulsive disorder (OCD) could also lead to someone developing psychosis. This could happen as the result of extreme stress associated with the condition.

Psychosis can also happen when someone:

• has a brain injury
• is withdrawing from alcohol
• is sleep deprived
• has taken recreational drugs, such as cannabis or cocaine
• is withdrawing from recreational drugs
• has an infection, such as a urine infection. Infections can sometimes cause a condition called delirium, which can cause people to become disorientated and sometimes to develop psychotic symptoms. The psychotic symptoms usually improve as the cause of the delirium is treated.

Psychosis can also happen as the side-effect of a new or recently-prescribed medication, or when withdrawing from medication.

Sometimes it isn’t possible to work out why someone has developed psychosis.

Is it schizophrenia or psychosis?

Not everyone who experiences psychosis will be diagnosed with schizophrenia:

• Some people only have one ‘episode’ of psychosis. This means they experience psychosis, recover, and never experience it again.
• Some people have multiple episodes of psychosis throughout their lives.
• Some people go on to receive a diagnosis of schizophrenia or a related psychotic disorder. The diagnosis you receive might sound quite complicated, and you can ask your doctor to explain what the different parts of your diagnosis mean.

It can also take some time to receive a diagnosis of schizophrenia, and you probably won’t receive one when you first become unwell. If you have experienced one or more episodes of psychosis and want to understand why you have not been diagnosed with a condition like schizophrenia, speak to your doctor. There may be reasons that your doctor does not feel that one of these diagnoses best describes your experiences.

“When I look back at my experience of when I was diagnosed, I didn’t understand why it happened at that specific time. I didn’t know that you had to have seen the symptoms for at least a month, and I thought I was doing well and that the diagnosis was indicating that I wasn’t doing well. But now I understand that that wasn’t the case. My diagnosis didn’t indicate how well I was.” Ashley

We don’t always know what causes someone to develop schizophrenia. There are some ‘risk factors’ that can make schizophrenia more likely to develop, and often multiple factors are involved. These risk factors include:

Genetic factors

There are specific genetic risk factors that make someone more likely to develop schizophrenia. Similar genetic risk factors are involved in whether someone develops schizophrenia, severe depression or bipolar disorder. There are also environmental risk factors, and these can interact with genetic risk factors to increase or decrease your risk of developing these conditions.

For example, you might have genetic risk factors that mean you are more likely to develop schizophrenia. However, if you grow up or live in a stable environment, this could protect you from developing a severe mental illness.

Having a relative with the condition

Having a relative with a severe mental illness like schizophrenia makes it more likely that you will develop a severe mental illness yourself.

If you have a parent with a severe mental illness, you have a 1 in 3 chance of developing a severe mental illness yourself.

Differences in the brain

Studies have shown that some people with schizophrenia seem to have differences in their brains. These differences are both in the structure of the brain and in the chemical processes taking place in the brain.

Drugs and alcohol

Some people develop schizophrenia after using drugs or alcohol.

Regular use of cannabis from a young age seems to significantly increase the risk of someone being diagnosed with schizophrenia. Research suggests cannabis can as much as double the risk. New research has shown that stronger forms of cannabis, such as skunk, may increase this risk. This risk increases if you start using cannabis in your early teens.

Some people’s brains are more susceptible to developing psychosis or being diagnosed with schizophrenia if they use cannabis. You can find out more about cannabis, how to stop using it and what kind of support is available in our cannabis and mental health resource.

Amphetamines (also known as speed) can give you psychotic symptoms, but these usually stop when you stop taking the amphetamines. We don’t yet know whether these drugs on their own can lead to someone developing a long-term illness. However, they might do if you have other risk factors.

Some people develop psychotic symptoms during or soon after intoxication with or withdrawal from alcohol. It is more likely if you drink alcohol in large amounts or over longer periods of time. These symptoms will usually improve if you stop drinking alcohol.

Stress

Significant stress can make you more vulnerable to developing a mental illness like schizophrenia. Many people report experiencing something stressful in their life before their schizophrenia symptoms began. This can be a sudden event like a car accident or bereavement. It can also be an everyday problem, such as difficulties with work or studies, or more long-term problems with family relationships.

Abuse or neglect

As with other mental illnesses, you are more likely to develop schizophrenia if you experienced abuse or neglect as a child.

Autism and ADHD

If you are autistic or have attention deficit hyperactivity disorder (ADHD) you are more likely to develop schizophrenia. This might be because some of the factors that affect whether someone is autistic or has ADHD are also involved in whether someone develops schizophrenia.

Is there always a reason?

When thinking about the reasons people develop schizophrenia, it is important to remember that lots of different things are involved. No single risk factor causes schizophrenia.

Many people will experience the things described above and never develop schizophrenia. Some people develop schizophrenia and have none of these risk factors. It is important to remember that whatever the reason, if you develop schizophrenia, it is not your fault.

Your doctor might want to work out what caused you to develop schizophrenia in case this can help to treat you. For example, if you are taking drugs, helping you to stop taking drugs might be an important part of you getting better. Remember, if you are using drugs or alcohol to cope, this shouldn’t stop you from receiving timely, evidence-based treatment for schizophrenia.

“There’s a common misconception in the public that there’s something that must have happened to someone, either trauma or drugs. But for some people they don’t have any of those things. Sometimes it just happens and there’s nothing that you could have done to prevent it – it doesn’t mean that you’re mentally weak. It’s just one of those things.” Dr John Crosby

If you think you have schizophrenia, or have just been diagnosed with it, you might understandably be feeling scared and confused. There is a lot of misinformation about schizophrenia, and it can be very scary to ask for help. If you are experiencing an episode of schizophrenia, you might also be unable to tell that you are unwell. This can make it difficult to seek help.

Here are some important things to bear in mind:

• The sooner you get help and support, the more likely you are to get well, and the better your outcomes will be in the long term.
• Schizophrenia is treatable and people with the condition can live full and happy lives.
• There are lots of services available that are designed to support people with schizophrenia, and help is available.

If you are experiencing any of the symptoms associated with schizophrenia, speak to your GP. They will probably refer you to a specialist mental health service or your local Early Intervention in Psychosis service. You can find out more about this specialist service in our psychosis resource.

Assessment

If you have symptoms that suggest you might have schizophrenia, you should be assessed by a mental healthcare professional with expertise in the assessment and management of mental illnesses like schizophrenia. They should find out more about:

• your mental health
• whether you are using drugs or alcohol
• any medications you are taking
• any physical health conditions you might have and your general physical wellbeing
• your relationships and support networks - for example, if you are supported by a carer
• any traumatic or difficult experiences you might have had in the past
• your education and employment history
• your general quality of life.

This might seem like a lot of information. However, it can help the people treating you to understand how you live, things you might be finding difficult, and all the different ways they can help you.

There is no physical test for schizophrenia. Instead, the person assessing you will try to find out about any symptoms you might be experiencing. This will help them to make an accurate diagnosis.

There are lots of different things that can help someone who has schizophrenia, and these things might be helpful at different times and in different ways.

The aims of treating schizophrenia should be:

• helping you to reduce your symptoms
• relieving any distress or disruption to your daily life that you might be experiencing
• helping you to get your quality of life back.

Unfortunately, some of the services we mention here are not always available across the whole of the UK. Some services might be available, but you might not be able to access them straight away.

Antipsychotics can help to reduce the symptoms of schizophrenia, particularly ‘positive’ symptoms.

How do antipsychotics work?

Antipsychotics affect different chemicals in your brain, particularly a chemical called dopamine. It is thought that psychotic symptoms like delusions and hallucinations are caused by the brain producing too much dopamine. Antipsychotics work by reducing the levels of dopamine in the brain, which can improve or reduce psychotic symptoms. 

Other brain chemicals such as serotonin, noradrenaline, histamine and glutamate are also thought to be affected in schizophrenia. Many antipsychotics also affect the levels of these chemicals. 

Do antipsychotics have side-effects?

All medications have side-effects, and these can vary depending on the person and the type of medication. Your doctor should explain the side-effects that you might have if you start taking an antipsychotic, and give you the opportunity to discuss your medication and any concerns you might have.

You should also be offered a leaflet that explains the common side-effects associated with the medication that has been recommended for you. Take time to read this leaflet, and if you have any questions ask the person who is prescribing your medication.

If you feel like the medication you are taking is giving you unpleasant side-effects, speak to your doctor. They should support you to find a medication that treats your symptoms but doesn’t cause you intolerable or unpleasant side-effects. Your doctor should also consider any other medication you are taking when prescribing you antipsychotics, and the potential interaction between these. You can read more about this on the BNF website.

Health monitoring

You should be offered a full physical health screening before starting any antipsychotic. This will include:

• blood tests, to screen for conditions like diabetes mellitus and high cholesterol
• physical observations (such as blood pressure, heart rate and temperature)
• height and body weight checks, and possibly checks of your body mass index (BMI)
• an ECG, which measures the electrical activity of the heart
• a discussion around smoking, alcohol intake and drug use, if these are relevant to you.

It is important that you have physical health monitoring at least once a year while you are taking the medications you are prescribed to treat your schizophrenia. These health checks can be performed by your GP or your mental health team. Speak to your mental health team to find out who will do your physical health checks, and what will happen if any health problems are identified.

Some things can interact dangerously with antipsychotics, including certain other medications, alcohol, illegal drugs and cigarettes. It is important that you speak to your doctor:

• before you start taking any other medications
• if you are drinking alcohol
• if you are using illegal drugs
• if you consume a lot of caffeine (especially if you do this sometimes but not all the time)
• if you decide to start, stop or cut down on smoking cigarettes. If you stop smoking this can increase the amount of antipsychotic in your blood, so you might need a lower dose of medication. This is especially important if you are taking clozapine (you can read more about clozapine in the next section).
• if you have an infection, as these can alter the levels of medication in your body.

Why is health monitoring necessary?

People with schizophrenia can experience worse physical health, particularly cardiovascular health, which is why it needs to be carefully monitored. Your doctor might recommend that you make lifestyle changes, manage your medication differently or take additional medicines to prevent certain side-effects (such as weigh gain), if it will help to improve your physical health.

Which antipsychotic will I be given?

There are lots of different antipsychotic medications. All antipsychotic medications have been consistently shown to be similarly effective, apart from clozapine which has been shown to be more effective. What does vary from one antipsychotic to another are the kinds of side-effects that people get when taking them, and how severe these are.

You might be advised not to take certain antipsychotics if you:

• are able to get pregnant
• are taking certain other medications
• have certain other health conditions such as diabetes mellitus or high blood pressure.

Your doctor should consider all of these things, and work in partnership with you to choose an antipsychotic that works best for you.

“I had an experience where the person treating me asked if I could change medication. I thought deep down that it wasn’t the right decision, but I went ahead with it and then I regretted it afterwards and had a bit of a relapse. I realised if I trusted that I knew that medication was helpful, that would have helped. Know you have a voice and you can share your opinion.” Ashley

Clozapine

Clozapine is the only antipsychotic that has consistently been shown in research studies to work in people where other antipsychotics have not worked well. Your doctor might suggest you are started on clozapine if:

• you have tried at least two different antipsychotic medications for at least several weeks and
• you continue to be troubled by psychotic symptoms.

If you start taking clozapine, you will receive the usual physical health checks, as described in the previous section. You will also receive closer monitoring:

• For the first 18 weeks that you are taking clozapine, you will need to have a blood test once a week.
• After this, for up to a year after starting clozapine you will need to have a blood test every two weeks.
• After one year, you will need to have a blood test every four weeks for as long as you are using clozapine.

Blood tests

If you are taking clozapine, you must have regular blood tests called a full blood count. This is to check for a very rare potential side-effect of clozapine where the number of white blood cells in your body is reduced. White blood cells fight infection and if you don’t have enough of them, you can become very unwell. Regular blood tests can help doctors to ensure there is no sign of this happening.

You might also need a different blood test, called plasma level monitoring. This test monitors how much clozapine is in your blood. It might be used to make sure you are taking the correct dose of clozapine and to rule out or diagnose any health issues associated with clozapine use.

Evidence is beginning to emerge which suggests that in the future, some people may not need blood tests as often as they do currently. If guidance around this changes, your mental health team will discuss this with you.

It is very important, if you are taking clozapine, that you take it as prescribed. If you miss your clozapine dose for more than 48 hours, you should contact your doctor urgently for advice before taking your next dose of clozapine. This is because it can be unsafe to take a full dose after a break. 

Side-effects

People taking clozapine can also experience some other side-effects. Some of these are similar to those listed in the previous section about all antipsychotics, but some are particularly common with clozapine, including:

• weight gain
• tiredness
• constipation.

Clozapine can also cause some people’s hearts to beat faster than usual (known as sinus tachycardia). This can be the body’s normal response to starting clozapine. However, it is also a symptom of heart damage. Because of this, if someone continues to have sinus tachycardia they should be checked for other signs and symptoms of heart damage.

These side-effects can sound worrying, but most are easily managed. Many people who take clozapine find it very helpful for staying well, and have a manageable (or low) level of side-effects.

How long will I have to take medication?

Many people want to know how long they will have to take medication, and if they will be able to stop taking it in the future. It can be really difficult to predict how long someone might need to take medication for, and it can depend on a lot of different things.

There is a high risk of relapse if you stop taking your medication within 1 to 2 years of starting it. Relapse means becoming very mentally unwell again. Staying on medication can significantly reduce the risk that you will experience any further relapses.

Some people will need to take medication for a long time, and some people will need to take it for the rest of their lives to stay well. How long you will need to take medication will depend on you and your unique situation.

What will happen if I stop taking my medication?

If you stop taking your medication, you might become unwell again. The more times you have a relapse, the more difficult it can be for you to become well again. You also might not have the same level of recovery each time. This is one of the reasons that your doctors will encourage you to keep taking your medication.

If you want to stop taking your medication or are thinking about doing so, we strongly advise speaking to your mental health professional or GP first. They should discuss the pros and cons of stopping your medication, any risks that might be involved, and the best way to do it.

“In my experience, people that are compliant with medication are the ones that have stayed well. That's my lived experience. I came off medication so many times to go back in the military, which led to a sort of revolving door syndrome.” Michael

Long-acting injectables

Long-acting injectables, also known as depot medication, are medications that are given as an injection into a muscle (intramuscular injection), rather than taken as a tablet. The medication is then slowly released into the body over a number of weeks.

The medication in a long-acting injectable is the same as in a tablet. Some people prefer a long-acting injectable to a tablet, because they don’t have to remember to take their medication every day. On the other hand, some people don’t like injections, or prefer the idea of choosing to take a tablet each day.

Research shows that people who use long-acting injectables have better outcomes than people who take antipsychotic medications in tablet form. You can find out more about long-acting injectable antipsychotics in our information resource.

“It’s easier for me to have an injection once a month, especially with the sleep pattern that I’ve got. If I go on a night out and then I end up staying over at someone’s house, I don’t have to be worrying about whether I’ve got my tablets. From a convenience point of view an injection at the GPs once a month is a lot easier to manage.” Michael

Psychological therapies or talking therapies are where you talk to a therapist on your own or in a group about the problems you are having.

Psychological therapies are recommended as a treatment for psychosis, schizophrenia and schizoaffective disorder, and there is a lot of evidence that they are effective. You should be offered a psychological therapy at the same time as medication, as this can make both things more effective.

How helpful you find different psychological therapies will depend on you and your unique situation.

Unfortunately, it can take some time to access psychological therapies depending on where you live.

Cognitive behavioural therapy (CBT)

CBT helps you to learn more helpful ways of thinking and reacting in everyday situations. Unlike some other talking therapies, CBT focuses on your current challenges rather than on your past experiences.

You should be offered individual CBT, which is where you meet with a therapist on your own, for at least 16 weekly sessions.

How can CBT help me?

CBT can help you to:

• understand links between your thoughts, emotions and behaviours in relation to your symptoms
• understand how your beliefs relate to the symptoms you have
• develop alternative ways of coping with your symptoms
• feel less distressed by your symptoms.

When will I start CBT?

Psychological therapies are usually more helpful if you are able to engage in them and complete work outside of your scheduled sessions. If you are mentally unwell, it might be better for you to start CBT when you are more stable. This is because in CBT you might need to challenge some of the delusions or beliefs you have. If you are not ready to do this, it could damage the relationship between you and your therapist, and cause your mental health to get worse.

Art therapies

Art therapies use different forms of creative expression to help people explore their thoughts and feelings. Art therapies can involve things like painting, photography, sculpture, music and writing.

Art therapies can help you to:

• express yourself
• find new ways of communicating with other people
• represent your experiences through art.

Art therapies might help to improve your negative symptoms.

Family interventions

Family interventions are different kinds of support that you and your family can be given to help improve your recovery.

There are lots of different ways of working with families. However, family interventions should be performed by mental health professionals and cover the following things:

• psychoeducation - helping you and your family to understand your diagnosis better
• managing and reducing stress
• helping you and your family to process your emotions effectively
• learning to think about thoughts and beliefs in a different way
• problem solving.

Family interventions might include you or they might be offered to just your family to start with. Family interventions should be offered for at least three months, for at least 10 sessions.

Other therapies

There are other therapies that are not covered in detail here, such as voice dialogue (or avatar) therapy, as these are not necessarily widely available across the UK.

If you are very unwell, you may need to spend some time in a psychiatric hospital to help you recover. This can be helpful if you:

• need a high level of treatment and care
• are at risk of harming yourself or others
• are at risk of being harmed by others.

Being sectioned

In some cases, you may need to be assessed under the Mental Health Act, and detained in a hospital setting. This might happen if it isn’t safe for you not to be in hospital or to make decisions about your care on your own. This is also known as ‘being sectioned’, and means that you will be kept in hospital by law.

There are many different kinds of section, and you can find out more about them in our being sectioned resource. This resource only applies to England and Wales, and there are other laws and regulations in Scotland and Northern Ireland.

If you have been detained under the Mental Health Act, your doctors should still ask your opinion about your treatment and help you to be part of the decision-making process as much as possible. In some situations, your doctors might need to speak to a close friend, family member or carer about your treatment. There are rules around information sharing, which you can find out more about in our information resource on caring for someone with a mental illness.

Independent mental health advocates

If you are detained under the Mental Health Act, you are automatically entitled to access an independent mental health advocate (IMHA).

IMHAs are individuals who have good knowledge of:

• the Mental Health Act
• the rights of individuals who are detained under the Mental Health Act.

IMHAs are fully independent of the mental health trust whose care you are admitted to hospital under. They can support you with appealing your detention and attend your ward reviews. They can help to ensure your views and opinions are heard and considered by the people treating you.

You can find out more about IMHAs on  the Mind website.

You might be able to receive your care and treatment in the community. This means that you can stay living at home, or in supported accommodation, and be treated by a community mental health team.

Community mental health teams are made up of lots of different roles, including psychiatrists, mental health nurses, occupational therapists, psychologists, support workers and more.

As well as providing you with mental health support by reviewing your medication or providing you with psychological therapies, they can also help you with other things like employment, housing or applying for benefits.

Supported accommodation

It can be a complex process to get supported accommodation, if this is something you need. Getting it depends on collaboration between all of the people involved in your care. The focus of you getting care in the community should be on promoting your independence while ensuring you have the right support.

Teams in the community

There are different teams that can support you in the community:

• Early intervention in psychosis team – This team provides intensive support to people with a first episode of psychosis, some of whom might have a diagnosis of schizophrenia or schizoaffective disorder.
• Assertive outreach team – This team provides extensive help and support for people who have had a diagnosis of schizophrenia or schizoaffective disorder for a long time. This can be especially helpful for people who find it difficult to work with other services, or who have not been able to take their medications regularly for various reasons.
• Crisis resolution and home treatment team – This team can help you if you are becoming mentally unwell as an alternative to you being admitted to hospital.
• Vocational rehabilitation – This includes day centres, day hospitals and community health centres. These facilities offer different activities such as back-to-work courses, education, art and cooking. You might also be able to make connections with other people who are experiencing similar things to you.

The availability of these services can vary widely depending on where you live.

Social support

If you are struggling to look after yourself in the community, it might be helpful for you to be allocated a social worker, who will undertake a Care Act assessment to understand whether you have any unmet social care needs.

The Care Act assessment might recommend that you are offered:

• a package of care in the community in your own accommodation
• a supported living placement
• an assessment from an occupational therapist

A Care Act assessment might take place when you are admitted into a psychiatric hospital, or when you are in the community.

Recovery looks very different for different people. It depends on lots of different things, including how consistently you take your prescribed medication, your level of engagement with mental health services, and the support you receive from friends and family. You can do all of the ‘right’ things to get well and stay well, and still experience ups and downs in your symptoms.

It can be helpful to try not to think of recovery as ‘having no more symptoms’, as this might not be possible. Instead, you could think of recovery as:

• being able to do the things you used to do
• understanding your condition
• learning what helps you to stay as well as possible
• knowing the signs of when you are becoming unwell, and what help you need when you are.

There are lots of things you can do to support yourself to stay as well as possible. Your mental health team should provide you with a staying well plan and work with you to complete it. Your staying well plan should be reviewed on a regular basis and modified if necessary. It is important that this plan is produced in collaboration with you and the people involved in your care, and that the things it covers are relevant to you.

Other important things you can do to support yourself include:

Avoiding things that cause you stress

These things will be different from person to person, but might include:

• Triggering environments – This could be certain places or people that cause you to feel particularly stressed.
• Drugs and alcohol – While drinking or taking drugs might be enjoyable at the time, in the long-term it can have a negative effect on your mental health. Drugs and alcohol can cause your mood to deteriorate, making you feel paranoid or causing you to start hallucinating. Drugs and alcohol can also interact with your medication and potentially be very dangerous.

“Good stress can cause relapse as much as bad stresses do.” Debra

Doing things that support your wellbeing

Many of these are things that everyone can do to help them stay mentally and physically well. They can be particularly helpful if you have a mental illness:

• Eating well – Try to eat regularly, avoid skipping mealtimes, and eat foods from the key food groups. You can find out more about eating well on the NHS website.
• Exercising – Staying active has been shown to support good mental health. Try to find an exercise that you enjoy that you can do regularly. This could mean going for a brisk walk, going swimming, or trying out a local exercise class.
• Staying in touch with your mental health team – Reach out to your mental health team if you are struggling, and find out what kinds of support they can offer you in the areas you need help with.
• Financial and housing stability – Difficulties with money or housing can be some of the most stressful things we experience. If you are struggling with your housing or finances, take a look at our resource on benefits, financial support and debt advice, which explains what kinds of benefits you might be entitled to and how to get them. If you have an occupational therapist in your mental health team, they might be able to help you with this.

“I cannot stress how much I have found that eating well, exercise, sleep and managing stress are on a par with taking meds to ensure a reasonable quality of life. I also avoid all other drugs, alcohol and nicotine. I appreciate this might be hard for a lot of people, but the benefits are very worthwhile.” Debra

“Your diagnosis is helpful, but it doesn’t define you. Something that’s helped me is having hobbies, because sometimes you may feel isolated. But if you realise there’s support systems around you, like loved ones and health professionals, it helps make the journey of recovery easier.” Ashley

Understanding your relapse signature

Your relapse signature is a way of describing the things that you typically start to do or behaviours you start to show when you are becoming mentally unwell. It is called a ‘signature’ because it is unique to you.

You and the people close to you can look out for these things and have an agreed plan for what to do if you start to do these things. Signs you are becoming unwell might include:

• not sleeping
• isolating yourself or going out more than usual
• speaking or acting differently than you usually do
• a decline in your work or school performance
• being more irritable or aggressive, including towards family and friends

An important thing to consider with relapse is ‘loss of insight’. This is when you stop being able to tell that you are unwell, and that your symptoms are not real.

Recovery Colleges

Recovery Colleges provide online and in-person courses on mental illness, mental health and wellbeing. They are aimed at people who have been mentally unwell and who are looking to learn more about their condition and how they can support their recovery. Recovery Colleges also have courses aimed at family, friends and carers.

Recovery Colleges are available at many NHS mental health trusts, and also online through Recovery College Online.

“I started going along to a couple of courses two or three years ago and learnt more than I’d learned in the previous 35 years.” Debra

Social prescribing

An important part of your recovery can be spending time with others doing things that you find enjoyable. Social prescribing helps to connect people to community services and groups local to them that can help to support their mental and physical health.

For example, if you enjoy gardening, social prescribing might involve putting you in touch with a weekly gardening group near you where you will be able to meet with others and spend time together doing what you enjoy.

You can find out more about this in our social prescribing resource.

If you have been very unwell, your work life will probably need to change. This might mean getting more support from your employer, taking a break from your job, or finding a different job if your current job causes you stress. These changes might not need to be permanent, but it is important to think whether there are any changes you can make to help you stay as well as possible.

Informing your employer

If you have been diagnosed with a mental illness, you might be wondering whether to tell your employer. Some people are worried about speaking to their employers about their diagnosis in case they lose their job, are mistreated, or are treated differently to their colleagues.

Mental illnesses are considered a disability by the Equality Act 2010 and the Disability Discrimination Act 1995 in Northern Ireland. This means that it is against the law to discriminate against someone because they have a mental illness.

If you do tell your employer about your diagnosis, they have a legal responsibility to support you.

Reasonable adjustments

Your employer might need to help you make reasonable adjustments to your job. For example, if you have been unwell but are ready to return to work, they could offer you a phased return. This might mean working half days instead of full days or working part-time and then slowly increasing your hours to full-time again.

Think about what kinds of adjustments might be helpful for you and speak to your employer. You can find out more about reasonable adjustments on the Acas website.

Access to Work

Access to Work is a service provided by the Department for Work and Pensions (DWP) that can offer practical and financial support to people with disabilities. It is available to people who are employed, self-employed, or looking for employment.

Access to Work can provide support or adaptations beyond the ‘reasonable adjustments’ described above. For example, Access to Work might help your employer to pay for a job coach or additional training for you.

“I’m only working part time, but Access to Work has been hugely helpful to me managing my experiences in work and a lot of people don’t know about it. If you can get the support of your community mental health team to apply, it can make such a difference.” Alice

If you are diagnosed with schizophrenia and you drive, you are legally required to inform the Driver and Vehicle Licensing Agency (DVLA).

If you experience a relapse of your schizophrenia, you will need to stop driving as it would not be safe for you to drive. However, you may be able to start driving again if you have been well for at least 3 months. Your doctor should be able to help you to understand whether or not it is safe for you to drive.

Following your recovery from a relapse of your schizophrenia, the DVLA will write to your GP or psychiatrist to request that they assess whether it is safe for you to drive again.

You can find out more about mental illnesses and driving on the DVLA website in the section on psychiatric disorders.

If you know someone who has schizophrenia, you might be wondering how to support them. Here, we’ve suggested some things that you can do.

“If it hadn’t been for those people in my life who stayed in my life all the time I was under care, I don’t think I’d be where I am now, where I’ve really got a quality of life.” Michael

Supporting yourself

Schizophrenia can also affect the people who know the person who has received the diagnosis. If someone you know or care for has been diagnosed with schizophrenia, you might find it helpful to get information and support as well. This can be helpful for both of you, because the more informed and supported you are, the more you will be able to help the person you know.

If you are very close to someone with schizophrenia, you should be offered a family intervention where you can find out more about schizophrenia and what it means for you and them.

Learning about schizophrenia

There are many myths about schizophrenia which we look at later on in this resource. Because of this, if you don’t know anyone with schizophrenia, you might have some beliefs about it that aren’t true. You can help the person you know by informing yourself about schizophrenia, using reliable information from healthcare organisations or charities, some of which we’ve listed below. You could also look for stories from people with schizophrenia to understand what you and your loved one can expect now and in the future.

“Empower yourself with accurate and reliable knowledge to better understand schizophrenia so that you are in a better place to help your friend or family member. You can remind them of the most important information at tougher times, and help them to get the most out of their care by asking clarifying questions if the reality of their care isn’t matching what they should be receiving.” Nichola

Finding out how you can help

Ask the person you know if there are any particular things that you might be able to support them with. They might ask you for practical help, like helping them to organise their finances. Or they might ask you for emotional support, like attending an appointment with them.

If you are closely involved in someone’s care, there might also be times when you have to speak to doctors about their treatment, help make decisions or advocate for them. You can find out more about this in our resource on caring for someone with a mental illness.

Financial support

If the person you know has periods of time where they spend a lot of money, or if they are vulnerable to being exploited by others, you might be able to help them to put some steps in place to protect their money. This must be a decision that you make together.

You can find out more about benefits, financial advice and debt in our information resource. You can also visit the National Debtline website to read more about money, debt and financial support for people who have a mental illness.

You can also visit the Citizen’s Advice website, or find your local Citizen’s Advice. You should be able to speak to an advisor about the benefits you are entitled to, and they may be able to support you in filling out forms and getting supporting evidence.

Understanding delusions

It can be hard for family and friends to know how to respond when someone they know has thoughts or ideas that are obviously untrue. Family and friends often wonder whether to challenge these thoughts, agree with them, or just ignore them. It is important to remember that for the person experiencing the symptoms of schizophrenia it can be impossible to tell these symptoms from reality.

You might find it more helpful to validate their feelings, rather than the beliefs that are causing their feelings. For example, if the person you know is scared that they are being surveilled by the Government, rather than trying to convince them that this isn’t happening, you could instead respond to the feelings they are having by saying:

“That sounds really scary, I’m so sorry. Is there anything I can do to help you feel safer?”

Unfortunately, you won’t always be able to help someone to feel better when they are in a crisis. It will depend on your relationship and the nature of their delusions.

“My husband says you’re stealing all my money, I’ll say I’m very sorry you’re upset about that, let’s see what we can do about it”. Janet

If you are a carer

If you spend time looking after someone who has a mental illness, you might be considered a ‘carer’. Caring for someone with a severe mental illness like schizophrenia can be very difficult at times, and it is important that you are able to support your own physical and mental health as well. Even if you don’t see yourself as a carer, you could still be entitled to certain benefits and support.

If you are a carer, you are entitled to a free carer’s assessment. This will help to work out what might make your life easier. You can find out more about how to get one on the NHS website.

You might also be able to find local support groups specifically for carers, friends and family of people with schizophrenia.

Find out more about being a carer in our resource on caring for someone with a mental illness.

Most people don’t know very much about schizophrenia and take a lot of what they know about it from the media.

There are a lot of myths and misconceptions about schizophrenia that can make life for people with the diagnosis more difficult and dangerous. Here, we look at three common myths about schizophrenia that you might have heard.

These myths can be incredibly upsetting to hear if you have schizophrenia or know someone who does. Speak to someone you trust about how you are feeling if you hear something upsetting about schizophrenia.

Myth 1: Schizophrenia is untreatable

Schizophrenia is treatable, and people with schizophrenia can live happy and fulfilling lives in the community. The myth that schizophrenia is untreatable ignores the fact that people with schizophrenia live among us and that many of us know and love someone with schizophrenia. It also makes people with schizophrenia less likely to get help or to tell others about their condition. This means that they are more likely to stay unwell for longer.

“When I was first diagnosed in 1986, I was told my marriage was a failure and that my husband and I didn’t suit each other and that it was over. I was told I’d never be well enough to have children and that my life expectancy was about 50 on the medication at the time. I’m now 65 with two grown up children and a grandson, and I’ve been married 43 years. So there’s hope, there’s always hope.” Debra

Myth 2: People with schizophrenia have multiple personalities

Schizophrenia is often confused with ‘multiple personality disorder’. This is a completely different diagnosis and its real name is ‘dissociative identity disorder’.

People with schizophrenia do not experience having multiple personalities. The voices and ideas they experience feel like they are coming from outside of them rather than from inside their head. For example, for people hearing voices these can feel like someone talking into their ear, from behind them, or in the distance.

Myth 3: People with schizophrenia are all dangerous

Unfortunately, there is a common public perception that all people with schizophrenia are violent or dangerous. This assumption contributes to the stigma associated with having a diagnosis of schizophrenia. It can make people less likely to get help when they become unwell. It can also lead to members of the public, and family and friends of people with schizophrenia, feeling intimidated or scared when they have no reason to be.

The majority of people with schizophrenia never commit acts of violence. People with schizophrenia are also more likely to be the victims of violence than to commit acts of violence themselves. They are also more likely to self-harm or die by suicide than the general population.

However, the likelihood of people with schizophrenia committing acts of violence is higher when compared with the general population. This is more likely in people who use recreational drugs like cannabis or misuse alcohol. This is less likely when people with schizophrenia are receiving treatment.

This is why it is important that people with schizophrenia are encouraged to seek out the care they need and deserve, and are supported by the people around them at times when they might be more vulnerable. Schizophrenia is not a condition to be feared.

“In the media and the news when something terrible happens like a murder, and the accused is ill, the newspaper will always refer to them as a paranoid schizophrenic, regardless of what the diagnosis is.” Michael

Psychosis and schizophrenia in adults: prevention and management, information for the public, NICE – The National Institute for Health and Care Excellence (NICE) provides guidance on the standards of care and treatment that people with different health conditions should receive. This information is for members of the public and looks at the guidance for adults with psychosis and schizophrenia.

Charities

You can find other reliable information about schizophrenia and other mental health problems through the following charities:

• Mind
• Rethink Mental Illness

Related resources

Below are some of our resources that are related to schizophrenia and its support and treatment, which you might find helpful:

Other conditions

• Psychosis
• Schizoaffective disorder
• Catatonia
• Schizophrenia in young people
• Psychosis in young people

Treatments

• Antipsychotics
• Long-acting injectable antipsychotics

Support and care

• Benefits, financial support and debt advice
• Caring for someone with a mental illness

This information was produced by the Royal College of Psychiatrists’ Public Engagement Editorial Board (PEEB). It reflects the best available evidence at the time of writing.

Expert authors: Dr Declan Hyland, Dr Angeliki Tziaka, Dr John Crosby and Dr Louay ElTagy

Experts by experience: Alice Evans, Ashley Nsimbi, Debra Knychala, Janet Seale, Mark Ellerby, Michael Robinson and Dr Sofija Opacic.

References available on request.