Schizoaffective disorder

Schizoaffective disorder is a severe mental illness. People who live with schizoaffective disorder can experience extreme differences in the way they perceive the world around them, and can find it difficult to tell what is real and what is not real. They can also experience extreme and distressing changes in their mood.

Schizoaffective disorder is its own distinct mental illness, but it does share some of the symptoms of schizophrenia and bipolar disorder. It is sometimes described as sitting in the spectrum of schizophrenia and bipolar disorder. This is because schizoaffective disorder has equally prominent psychotic symptoms and mood symptoms.

You can understand what schizoaffective disorder is by looking at the name of the diagnosis:

Schizo – this part of the word relates to the symptoms of psychosis

Affective – this part of the word relates to mood, and the mood symptoms that exist in schizoaffective disorder.

It is important to note that schizoaffective disorder and schizophrenia are different conditions, though they share some symptoms and treatments. The main difference is schizoaffective disorder has a mood component, which can involve mania or depression, whereas schizophrenia does not.

If you have schizoaffective disorder, or are experiencing an episode, you will have:

• the symptoms of psychosis and
• the symptoms of bipolar disorder, which includes manic, mixed and depressive episodes. We explain these below.

It is important to note that you are unlikely to experience these symptoms all 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.

Psychotic symptoms

Delusions
Delusions are beliefs that are very real to you. However, they probably won’t be shared by or make sense to other people, such as your friends and family. Common examples of delusional beliefs include:

• that you are extremely powerful or important
• that things are connected to you and your life. For example, that a news story is linked to your life or that the radio is communicating with you.
• that someone, or lots of people, are watching you, harming you or trying to hurt you or someone you know.

You might talk about these beliefs with other people, or do things that relate to these beliefs, such as hiding from the people you feel are hurting you. These beliefs won’t be easily explained away by your religion or culture.

Hallucinations
Hallucinations are when you hear, see, feel, smell or taste things that other people do not experience. The most common type of hallucination is auditory (hearing) hallucinations, which can feel like someone talking in your ear or from behind you.

Sometimes delusions will work to help you to ‘explain’ your hallucinations. For example, if you can hear voices talking about you, you might develop delusions that your neighbours are plotting against you, and that these are the voices that you can hear.

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 others are controlling your thoughts or actions, reading your thoughts or putting thoughts in your head. You might become suspicious of the people around you and find it difficult to trust others, or you might believe that you are being controlled by an outside force like god, the devil, spirits or aliens.

Negative symptoms
These are things that you might stop doing, 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 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, being unable to wash yourself or cook food
• Feeling that you want to isolate yourself or withdraw from others.
• Being unable to experience pleasure or enjoyment in things you previously enjoyed.

Significant changes in your level of functioning
Behaving in ways that are strange, unpredictable or don’t have a clear purpose. Or having inappropriate emotional responses. This will be very out of character for you.

Differences in how you move
Being very agitated or restless, or sitting very still and holding unusual postures. These are things that can happen in a condition called catatonia, which can happen to people with schizoaffective disorder 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.

Mood symptoms

If you have schizoaffective disorder, as well as experiencing psychotic symptoms, you will experience mood symptoms. These can be depressive, manic or mixed:

If you are experiencing a depressive episode, you might:

• feel consistently low in your mood
• lose interest in things you usually find interesting
• struggle to concentrate
• eat more or less than usual
• sleep more or less than usual
• feel worthless, guilty or hopeless
• have thoughts of not wanting to be alive or of wanting to end your life.

If you are experiencing a manic episode, you might:

• have an unusually happy mood, feel extremely irritable or be extremely open and communicative
• be extremely active and energetic
• speak and think extremely quickly
• have a higher self-esteem, or feel that you are extremely powerful or important
• need to sleep less than usual, but still not feel tired
• be easily distracted
• act without thinking, or put yourself or others at risk.

If you are experiencing a manic episode, you might do things that you wouldn’t usually do. For example, you might:

• start spending a lot of money on things you don’t necessarily need, using funds you don’t necessarily have
• go on last minute trips or holidays
• start speaking to strangers.

When manic symptoms begin, they can be very mild. However, over time they can start to impact more on how you function day-to-day, and on your relationships with family and friends.

A mixed episode is when you experience a mixture of both manic and depressive symptoms at the same time. These can change from day to day, or even over the course of the same day.

When you are experiencing an episode of schizoaffective disorder, you might find it difficult to realise that you are experiencing the symptoms described above. This can unfortunately make it difficult to seek help.

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 group of symptoms. People with lots of different conditions can experience symptoms of psychosis, including:

• schizoaffective disorder
• schizophrenia
• bipolar disorder
• severe depression

Anxiety disorders 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 anxiety disorder.

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 potentially to develop psychotic symptoms. The psychotic symptoms usually improve as the cause of the delirium is treated.

It can also happen as the side effect of a new or recently prescribed medication.

As described above, psychosis can also happen for no reason at all and not be linked to any other medical condition.

Not everyone who experiences psychosis will be diagnosed with schizoaffective disorder:

• 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.
• Some of these people will go on to receive a diagnosis of schizoaffective disorder 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.

If you have experienced one or more episodes of psychosis and want to understand why you have not been diagnosed with a condition like schizoaffective disorder, 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 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 schizoaffective disorder. There are some ‘risk factors’ that can make schizoaffective disorder more likely to develop, and it often involves multiple factors that work together. These risk factors can include:

Genes

There are specific genetic risk factors that make someone more likely to develop schizoaffective disorder. 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 schizoaffective disorder. 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 schizoaffective disorder 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 brain structure

Studies have shown that some people with schizoaffective disorder 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 schizoaffective disorder after using drugs or alcohol.

Cannabis
Regular use of cannabis from a young age seems to significantly increase the risk of someone developing psychotic symptoms. New research has shown that stronger forms of cannabis, such as skunk, may increase this risk. This is more likely if you start using cannabis in your early teens.

Some people’s brains are more susceptible to developing psychosis due to their use of 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
Amphetamines (also known as speed) can give you psychotic symptoms, but they usually stop when you stop taking the amphetamines. We don’t yet know whether these drugs, on their own, can trigger a long-term illness, but they may do if you are vulnerable.

Alcohol
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 schizoaffective disorder.

Many people report experiencing something stressful in their life before their schizoaffective disorder symptoms began. This can be a sudden event like a car accident or bereavement. It can also be an everyday problem, such as difficulty 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 schizoaffective disorder if you experienced abuse or neglect as a child.

Is there always a reason?

When thinking about the causes of developing schizoaffective disorder, it is important to remember that lots of different things are involved. No single risk factor causes schizoaffective disorder.

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

Your doctor might want to work out what caused you to develop schizoaffective disorder 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. However, if you are using drugs or alcohol to cope, this shouldn’t stop you from receiving timely, evidence-based treatment for schizoaffective disorder.

“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

Because of the complexity of schizoaffective disorder, it is not always possible for a diagnosis to be made quickly. There are several reasons why this is the case:

A lack of understanding

Schizoaffective disorder is not very well understood by the general public. This means that people who have schizoaffective disorder and those who know them might be less likely to realise what it is. Even many healthcare professionals who are not experts in schizoaffective disorder don’t understand what it looks like.

Confusion with other conditions

Depending on what symptoms someone has, schizoaffective disorder can be mistaken for another condition. For example, if someone has more of the symptoms associated with schizophrenia, they might first be diagnosed with schizophrenia or psychosis. Or if someone has mostly mood symptoms, they might first be diagnosed with bipolar disorder.

The time it takes to make a diagnosis

Because of the way schizoaffective disorder works, it is a condition that takes time and care to diagnose correctly. Doctors often need to ‘observe’ someone for a significant period of time to make an accurate diagnosis of schizoaffective disorder.

If you think you have schizoaffective disorder, or have just been diagnosed with it, you might understandably be feeling scared and confused. There is a lot of misinformation about conditions like schizoaffective disorder, and it can be very scary to ask for help. Unfortunately, if you are experiencing an episode of schizoaffective disorder, you might 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.
• Schizoaffective disorder 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 schizoaffective disorder, and help is available.

If you are experiencing any of the symptoms associated with schizoaffective disorder, 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 schizoaffective disorder, you should be assessed by a mental healthcare professional with expertise in the assessment and management of mental illnesses like schizoaffective disorder. 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 that you might be finding difficult, and all the different ways they can help you.

There is no physical test for schizoaffective disorder. 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 schizoaffective disorder, and these things might be helpful at different times and in different ways.

The aim of treating schizoaffective disorder should be:

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

Unfortunately, some of the services we mention in this section 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.

There are different medications that can help to improve the symptoms of schizoaffective disorder. The type of medication you are offered will depend on the kinds of symptoms you have, the kinds of symptoms you are struggling with the most, and how well you respond to different medications.

• Antipsychotics - Antipsychotics are used to treat psychotic symptoms, such as delusional beliefs, hallucinations and disorganised thinking.
• Antidepressants - Antidepressants are used to treat depressive symptoms, such as feeling consistently low in mood, and difficulties with sleeping and eating.
• Mood stabilisers – Mood stabilisers can help to treat manic symptoms, like high mood, impulsive behaviour, trouble sleeping and depressive symptoms.

If you have schizoaffective disorder and tend to experience manic symptoms, you will most likely be offered a combination of a mood stabiliser and an antipsychotic.

If you have schizoaffective disorder and tend to experience depressive symptoms, you will most likely be offered a mood stabiliser, an antidepressant and an antipsychotic.

It is important to note that the same medications can be used for different conditions, and sometimes to treat different symptoms. For example, antipsychotic medications like olanzapine or risperidone can be used to treat manic symptoms, psychotic symptoms and depressive symptoms.

The people treating you and prescribing your medication should explain to you why you are being given certain medications and what they do.

How do antipsychotics work?

Antipsychotics affect different chemicals in your brain, in particular 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 schizoaffective disorder. 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 you as an individual and the type of medication you are taking. 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 interactions between medications on the BNF website.

Health monitoring

You should be offered a full physical health screen 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 tests at least once a year while you are taking the medications you are prescribed to treat your schizoaffective disorder. 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 schizoaffective disorder 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 or depots

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 then 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 schizoaffective disorder and you drive, you are legally required to inform the Driver and Vehicle Licensing Agency (DVLA).

If you experience a relapse of your schizoaffective disorder, 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 schizoaffective disorder, 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 schizoaffective disorder, 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

Schizoaffective disorder 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 schizoaffective disorder, you might find it helpful to get information and support as well. This can be helpful for you and the person who is living with schizoaffective disorder, because the more informed and supported you are, the more you will be able to help them.

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

Learning about schizoaffective disorder

Schizoaffective disorder is misunderstood and many people have never heard of it before. You can help the person you know by finding out more about schizoaffective disorder in your own time, using reliable information from healthcare organisations or charities, some of which we’ve listed below. You could also look for stories from people with schizoaffective disorder to understand what it might mean for you and your loved one.

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 are manic and 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 if you care for someone with a mental illness, 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 schizoaffective disorder 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 under surveillance 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.

“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 schizoaffective disorder 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 and other friends and family of people with schizoaffective disorder.

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

“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

• 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 guidance is for members of the public and looks at the guidance for adults with psychosis, schizophrenia and schizoaffective disorder.
• National Debtline, Debt and mental health – Debtline is a registered charity providing free, impartial, expert debt advice. This page on their website looks at debt and mental health.

Charities

You can find other reliable information about schizoaffective disorder 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 schizoaffective disorder and its support and treatment, which you might find helpful:

Other conditions

• Schizophrenia
• Catatonia
• Schizophrenia in young people
• Psychosis in young people

Treatments

• Antipsychotics
• Antidepressants
• 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 and Michael Robinson and Dr Sofija Opacic.

References available on request.