The NHS should provide greater help and support to the relatives and carers of people with psychosis or schizophrenia. In wide-ranging updated guidance on treating and managing psychosis and schizophrenia in adults, the National Institute for Health and Care Excellence says carers' needs should be assessed to ensure they get the right level of support.

Among a number of new recommendations in the updated guideline, NICE says service users should be offered support from people who have recovered from psychosis or schizophrenia. It adds that clinicians should also consider giving advice to people with psychosis or schizophrenia to manage their condition. This should include information and advice about effective use of medication, identifying and managing symptoms, accessing mental health and other support services, coping with stress and other problems, what to do in a crisis and preventing relapse as well as setting personal recovery goals.

Professor Mark Baker, Centre for Clinical Practice Director, NICE, said: “There is considerable fear and stigma linked to psychosis and schizophrenia. The first few years after onset can be very upsetting and chaotic. Over a lifetime, about 1 in 100 people will develop schizophrenia, some people will recover completely from their symptoms; others will improve but may become ill again. This is the second update of NICE's very first clinical guideline. Since the original was published in 2002 there has been a new emphasis on how to detect and treat this condition earlier and also an increased focus on long-term recovery. This guideline sets out how best to treat and manage people with schizophrenia, from the first episode through to management of further acute episodes and longer term care.”

Professor Tim Kendall, Medical Director and Consultant Psychiatrist, Sheffield Health and Social Care NHS Foundation Trust and Director National Collaborating Centre for Mental Health, said: “Schizophrenia is a condition that affects a person's mental state, including their thoughts, mood and behaviour. The nature of the condition varies from person to person, but it can be enormously distressing for the individual and those around them. This cannot be under estimated, nor can the heavy burden placed on their carers. However, there are effective treatment options available and spotting the signs of the disorder early can help ensure the person and their family receives the treatment and support they need to live with the condition.

“Although some people will have persisting difficulties or remain vulnerable to future episodes, there is now strong evidence that most people will recover. To ensure this, we need to find ways to help manage continuing problems and overcome remaining difficulties. As well as recommending effective treatments and care, the guidance also places a strong emphasis on ensuring that patients and their carers have all the information and support they need.”

Professor Elizabeth Kuipers, Professor of Clinical Psychology, Institute of Psychiatry, King's College London and chair of the guideline development group, said: "There have been many developments since the original recommendations were published - we now know a lot more about successfully reducing the risk or preventing the development of psychosis. The newly updated guideline recommends the use of cognitive behavioural therapy (CBT), rather than antipsychotics, for people at risk of developing psychosis, along with interventions in line with NICE guidance on anxiety disorders, depression, and emerging personality disorder or substance misuse if they have coexisting problems.

“The updated guideline also emphasises that people with schizophrenia generally have poorer physical health and recommends routinely monitoring cardiovascular, obesity, respiratory and diabetes risk. It also recommends that people with psychosis or schizophrenia who smoke should be offered help to stop.”

Clive Travis, representing service users on the guideline development group, said: “As a frequent user of psychiatric services from 1994 until 2004, and in full recovery since then, I would like to commend the third edition of the NICE schizophrenia guideline.

“There seemed little science in my care until the latter part of that decade beyond random attempts to get a drug that suited me and other aspects of the care seemed more traditional than scientifically well founded. My initial bout of illness was not intelligently addressed by those treating me until the damage was done. My carers were left with a bitter taste due to lack of support. I was left staggered that I was being expected to accept the challenge of receiving the care afforded me and, until the first NICE schizophrenia guideline was published in 2002, always disavailed myself of the care at the earliest opportunity - either by escaping, absconding, appealing to tribunals and hospital lay panels for release or running away from the dangerous regime.

“I was not alone amongst users to lose my employment, almost as though to do so was part and parcel of the condition. The new schizophrenia guideline makes the possibility of employment part of the recovery and also better recognises the role of the carer.

“The newly updated guideline is a major stride in the long walk which is the history and science of recovery from schizophrenia and psychosis and will enable much of what happened to me to happen less often, less damagingly, in a less costly way or not at all. People with schizophrenia and psychosis can and do get better, get their life back and enjoy it again and this guideline will give them their best chance yet of doing that.”

Key recommendations include:

Referral from primary care: If a person is distressed, has a decline in social functioning and has:

• transient or attenuated psychotic symptoms or
• other experiences or behaviour suggestive of possible psychosis or
• a first-degree relative with psychosis or schizophrenia

refer them for assessment without delay to a specialist mental health service or an early intervention in psychosis service because they may be at increased risk of developing psychosis.

Treatment options to prevent psychosis: If a person is considered to be at increased risk of developing psychosis (as described above): offer individual cognitive behavioural therapy (CBT) with or without family intervention and interventions recommended in NICE guidance for people with any of the anxiety disorders, depression, emerging personality disorder or substance misuse.

First episode psychosis: Assess for post-traumatic stress disorder and other reactions to trauma because people with psychosis or schizophrenia are likely to have experienced previous adverse events or trauma associated with the development of the psychosis or as a result of the psychosis itself.

Support for carers: Carers of people with psychosis or schizophrenia should be offered an assessment (provided by mental health services) of their own needs and discuss with them their strengths and views. A care plan should be developed to address any identified needs and a copy given to the carer and their GP and ensure it is reviewed annually.

Promoting recovery and possible future care: People with psychosis or schizophrenia who wish to find or return to work should be offered supported employment programmes. For people who are unable to work or unsuccessful in finding employment other occupational or educational activities, including pre-vocational training should be considered.

The newly updated guideline on the treatment and management of psychosis and schizophrenia in adults will be published on the NICE website on Wednesday 12 February 2014. NICE has also produced guidance on the components of good service user experience. All healthcare professionals and social care practitioners working with people using adult NHS mental health services should follow the recommendations in the NICE Service user experience in adult mental health guidance.

Ends

Notes to Editors

About the guidance

1. The guidance will be available from 12 February 2014. Embargoed copies of the draft guidance are available from the NICE press office on request.

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