Frequently asked Qs

• What are the key facts
  • Schizoaffective disorder is a mental illness. It combines symptoms of schizophrenia and mood disorders, like mania or depression, or both.
  • Genetic and environmental factors can increase your risk of developing schizoaffective disorder.
  • The treatments you will be offered are medication, talking therapy, and other things like family intervention and art therapy. 
  • Your NHS mental health team should support you and help you to learn how to manage your symptoms.
  • You can learn self-care and management skills to help your symptoms.
• What is schizoaffective disorder?

  Schizoaffective disorder is a mental illness. It combines symptoms of schizophrenia and mood disorders, like mania or depression, or both. 

  It can affect your thoughts, emotions, and actions.   

  How many people experience schizoaffective disorder?

  It is hard to find accurate figures for how many people experience schizoaffective disorder. But schizoaffective disorder is less common than schizophrenia.  According to the Royal College of Psychiatrists, schizophrenia affects around 1 in 100 people. 

  For more information see our webpages on the following:

  • Psychosis
  • Bipolar disorder
  • Schizophrenia
• What causes schizoaffective disorder?

  Psychiatrists do not know precisely what causes schizoaffective disorder.  

  But genetic and environmental factors can increase your risk of developing the illness. 

  What are genetic factors?

  Schizoaffective disorder is slightly more common if other members of your family have schizophrenia, schizoaffective disorder, or bipolar disorder.  

  This suggests that genetics may have a role to play in the development of schizoaffective disorder.  

  What are environmental factors?

  Environmental factors are your personal experiences. It is thought that stress can contribute towards a schizoaffective episode. Stress can be caused by many different things such as bereavement, debt, or employment problems. 

  It is thought that childhood trauma can be a factor in the condition developing in later life.  Research shows that bad treatment in your childhood can make psychosis more likely.  

  There is information on self-help techniques further down this page. Self-help can help you to manage your symptoms and stress. 

  See our webpage on Does mental Illness run in families? for more information.

• What are the symptoms of schizoaffective disorder?

  Schizoaffective disorder combines symptoms of schizophrenia and mood disorders, like mania or depression, or both. 

  What are the symptoms of schizophrenia?

  Schizophrenia is a mental illness which affects the way you think. Symptoms can affect how you cope with day-to-day life. Symptoms include.   

  • Hallucinations. You may hear, see, or feel things that are not there.
  • Delusions. You may believe things that are not true.
  • Disorganised speech. You may begin to talk quickly or slowly, and the things you say might not make sense to other people. You may switch topics without any obvious link. 
  • Disorganised behaviour. You might struggle to organise your life, or stick to appointments, for example.
  • Catatonic behaviour. You may feel unable to move or appear to be in daze. 
  • Negative symptoms. These are symptoms that involve loss of ability and enjoyment in life. They can include the following things. 
    
    • Lack of motivation
    • Slow movement
    • Change in sleep patterns
    • Poor grooming or hygiene
    • Difficulty in planning and setting goals
    • Not saying much
    • Changes in body language
    • Lack of eye contact 
    • Reduced range of emotions
    • Less interest in socialising or hobbies and activities 
    • Low sex drive

  See our webpage on Schizophrenia for more information. 

  What are the symptoms of mania?

  You may experience the following if you have mania. 

  • Feeling overly active, energetic or restless.
  • Feeling more irritable than usual.
  • Feeling overconfident.
  • Talking very quickly, jumping from one idea to another or having racing thoughts.
  • Feeling elated, even if things are not going well for you.
  • Being easily distracted and struggling to focus on 1 topic.
  • Not needing much sleep.
  • Thinking you can do much more than you can, which could lead to risky situations and behaviour.
  • Doing things you normally would not which can cause problems. Such as spending lots of money, having casual sex with different partners, using drugs or alcohol, gambling or making unwise business decisions.
  • Being much more social than usual.
  • Being argumentative, pushy or aggressive. 

  Mania is associated with bipolar disorder.

  See our webpage on Bipolar disorder for more information. 

  What are the symptoms of depression?

  You may feel the following if you have symptoms of depression. 

  • Low mood,
  • Less energy, tired or ‘slowed down’,
  • Hopeless or negative,
  • Guilty, worthless or helpless,
  • Less interested in things you normally like to do, 
  • Difficulty concentrating, remembering, or making decisions,
  • Restless or irritable,
  • Sleeping too much, not being able to sleep, or have disturbed sleep,
  • Changes in appetite, or changes in weight, or
  • Thoughts of death or suicide or attempt suicide.

  See our webpage on Depression for more information.

• How is schizoaffective disorder diagnosed?

  A psychiatrist might diagnose schizoaffective disorder after a mental health assessment. 

  You can read more about mental health assessments from the NHS here.

  You may get a diagnosis of schizoaffective disorder if you have depressive or manic symptoms with symptoms of schizophrenia. 

  It might take more than one assessment for the psychiatrist to reach a diagnosis. 

  Psychiatrists will use the following manuals to help to diagnose you:

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

  The manuals are guides which explain different mental health conditions and their symptoms. They also explain how long certain symptoms should last for before a diagnosis should be made. 

  To get a diagnosis of schizoaffective disorder you should have had a combination of symptoms of both psychosis and mood symptoms . Your symptoms should be clearly there for a number of weeks. And should not be because of another condition or substance or medication.

• How is schizoaffective disorder treated?

  Schizoaffective disorder combines symptoms of schizophrenia and mood disorders, like mania or depression, or both. So, the treatments for schizoaffective disorder are the ones that are recommended for these conditions.

  For more information see our webpages on the following: 

  • Bipolar disorder
  • Depression
  • Schizophrenia 

  But below is a short summary of treatments for the different elements of Schizoaffective disorder.

  How is schizophrenia treated?

  Guidelines the NHS follow say you should be offered.

  • Medication, usually antipsychotics  
  • Psychosocial treatment. This helps you to look at how your thoughts and behaviour are influenced by the people and society you live in
  • Psychoeducation. This involves learning about your illness, your treatment and how to spot early signs of becoming unwell again,
  • Family intervention. You and your family work with mental health professionals to help to manage relationships.
  • Talking therapy.
  • Art therapy. This can help you reduce negative symptoms by expressing feelings and thoughts to help you look at things in different ways. 

  See our webpage on Antipsychotics for more information. 

  How is depression treated?

  Depression is usually treated with:

  • talking treatments
  • medication
  • Self-help techniques
  • guided self-help and digital therapy
  • physical exercise
  • light therapy
  • Brain stimulation treatments
  • mindfulness and meditation
  • behavioural therapy
  • peer support groups and coping strategies.

  How is mania treated?

  You will usually be offered mood stabilising medication if you are experiencing symptoms of mania. 

  You might be offered psychological therapy too.

  See our webpage on Mood stabilisers for more information. 

  What treatment guidelines do the NHS follow?

  NICE stands for the National Institute for Health and Care Excellence. They recommend guides for NHS health professionals to follow when thinking about treatment and support for different conditions. The care and treatment for schizoaffective disorder can be found in the following links to the guides:

  • Psychosis and schizophrenia in adults: Prevention and management.
  • Bipolar disorder: Assessment and management.
  • Depression in adults: Recognition and management.
• Who will manage my treatment?

  There are different NHS mental health teams that can support and treat you. Health professionals from different backgrounds work in the teams shown below. They work together to help your recovery. 

  What are NHS early intervention in psychosis teams (EIT)?

  NHS early intervention in psychosis teams (EIT) should support you if you experience psychosis for the first time.  

  The National Institute for Health and Care Excellence (NICE) say that EIT services should be open to people of all ages.    And you should start your treatment within 2 weeks of being referred. 

  You can usually self-refer to your local EIT. This means that you can contact them and ask for help, without first seeing your GP or another medical professional.  usually your family or friends can refer you too.  

  You should be able to find your local EIT on the internet. You can use a use a search term like ‘NHS early intervention psychosis team Leicestershire’. Or you can call NHS 111 and ask for contact details for your local team.  Or you can ask your GP to refer you.

  What is are NHS community mental health teams (CMHT)?

  Your local community mental health team (CMHT) can support you to recover from mental health issues. 

  They can give you short or long-term care and treatment in the community.  

  You might move from an early intervention in psychosis team to a CMHT if you need longer term care.

  You usually need to be referred to CMHT by your GP or another medical or social care professional. 

  What are NHS crisis teams?

  Your local NHS crisis team can support you if you need urgent mental health help in the community. 

  They offer short term support to help prevent hospital admission. But they can arrange for you to go to hospital if you are very unwell.

  A crisis team can also support you when you are discharged from a short stay in hospital.

  You can get crisis support by: 

  • Contact NHS 111 for urgent mental health support: You can call NHS 111 or visit this link. You will need to answer some questions. They will refer you to an appropriate service or tell you what to do next.
  • Contact your local NHS mental health team, if you are already being treated by them. You should have a care plan that says who to contact if you need urgent help.
  • Ask your GP for an emergency appointment. They can make a referral to the local NHS crisis team if necessary.

  What are NHS assertive outreach teams (AOT)?

  An AOT may work with you if you have complex or severe mental health needs and find it difficult to engage with mental health services.  Staff will usually visit you in your home.

  The team aim to give you support, so that you can get the treatment or care that you need from other services. 

  There is not an AOT in every area. You usually need your CMHT team to refer you to your local AOT team. 

  How can my GP support me?

  If your symptoms respond well to treatment, you might be discharged back to your GP. 

  Your GP should monitor your symptoms.

  GP surgeries have a register of people with severe mental illness, such as schizoaffective disorder. If you are on the register your GP should offer you an annual physical health check.  

  Your GP can prescribe repeat medication that you need for your condition. But they should consult with a psychiatrist if your medication needs to be changed.

  Your GP can refer you back to the NHS mental health teams shown above if necessary.

  For more information see our webpages on the following:

  • GPs and my mental health
  • NHS mental health teams 

  For more information see our webpage on Severe mental illness and physical health checks.

• What are self-care and management skills?

  Below are some ideas for self-care and management.

  What are peer support and self-management programmes?

  Peer support means that you get support from people who live with mental illness too. 

  • You can get peer support by joining a support group, or
  • You may be able to get peer support and self-management programmes through your mental health team.

  You can search for local support groups in the links below:

  • Rethink Mental Illness
  • Local Minds

  Peer support and self-management programmes might be able to give you information and advice about:

  • how medication can be helpful,
  • help you to notice and manage your symptoms, 
  • how to access mental health support,
  • how to access other support services, 
  • how to cope with stress and other problems, 
  • what to do in a crisis, 
  • help you to build a social support network, 
  • help you to notice when you are becoming unwell, and 
  • help you to set personal recovery goals. 

  What are recovery colleges? 

  Recovery colleges are part of the NHS. They offer free mental health courses to help you manage your symptoms. They can help you to take control of your life and become an expert in your own wellbeing and recovery.  

  You can usually self-refer to a recovery college.

  Unfortunately, recovery colleges are not available in all areas.  Search online to see if there is a recovery college in your area. 

  How can I manage voices I hear?

  Is it important to some people who live with psychosis to manage the voices they hear with alternative methods to medication.

  These resources might help, including one for carers:

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

  Website: www.ted.com/talks/eleanor_longden_the_voices_in_my_head

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

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

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

  Website: https://understandingvoices.com 

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

  Website: www.meandmymind.nhs.uk 

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

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

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

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

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

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

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

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

  What is a wellness action plan (WAP)?

  A WAP looks at things like how you are affected by your illness. And what you could do to manage your symptoms.

  There are guides that can help with this. You can ask your healthcare professional to make one with you. Or ask them for a template.  

  You can read more about wellness action plans here.

  You can see an example of a wellness action plan here.

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

  If you are not happy with your care or treatment you can: 

  • talk to your doctor about your care and treatment, 
  • ask for a second opinion,
  • get an advocate to help you speak to your doctor, 
  • contact Patient Advice and Liaison Service (PALS) by clicking here, or
  • make a complaint. 

  You can find more information about: 

  • Second opinions – About your mental health diagnosis or treatment 
  • Advocacy for mental health – Making your voice heard
  • Complaining about the NHS or social services
• What risks can schizoaffective disorder cause?

  The risk of suicide is higher if you live with schizoaffective disorder.  

  The right treatment can help control your symptoms and help to lower the risk of suicide.  

  You can make a crisis plan. You can do this yourself or you can ask someone to help you. A crisis plan can help you if you have suicidal feelings. Usually a plan will include people, services, and activities that can help you. 

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

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

  How can I get support?

  You can do the following.

  • Family therapy through the NHS. You can read more about ot on this NHS page – scroll down to ‘Family therapy’.
  • Speak to your GP if your mental health is affecting your day-to-day life.
  • Ask for a carer’s assessment from your local social services.
  • Join a carers service. They are free and available in most areas. 
  • Join a carers support group for emotional and practical support or set up your own.

  For carers’ services and support groups please visit the links below:

  • Rethink Mental Illness
  • Carers UK
  • Carers Trust

  How can I support the person I care for?

  You can do the following:

  • Ask the person you support to tell you what their symptoms are. Also, if they have any self-management techniques that you could help them with.
  • Encourage them to see a GP if you are worried about their mental health.
  • Ask to see a copy of their care plan if they have one. They should have a care plan if they are supported by a care coordinator.
  • Help them to manage their finances.

  For more information see our webpages on the following: 

  • Supporting someone with a mental illness
  • Getting help for someone in a mental health crisis
  • Suicidal thoughts - How to support someone
  • Responding to unusual behaviour linked to mental illness
  • Carer’s assessments – Under the Care Act 2014
  • Confidentiality, information and your loved one
  • Worried about someone’s mental health
  • Stress – How to cope

  You can find more information about:

  • What benefits are available for mental health carers?
  • Can someone else manage my money for me?

  by clicking this link.

• Useful contacts

  The Hearing Voices Network 
  This service gives support and understanding for those who hear voices or experience other types of hallucination.

  Address: 86-90 Paul Street London EC2A 4NE 
  Email: info@hearing-voices.org      
  Website: www.hearing-voices.org 

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

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

• Is this information accessible?
  • There is an accessibility function on this webpage called Recite.
  • On the desktop site, click on the icon in the top right-hand corner next to ‘Donate.’
  • On the mobile site, scroll right and click on the ‘Turn on accessibility’ icon.
  • You can watch a short video about Recite here.