Introduction

This quality standard covers the recognition, early intervention and management of bipolar disorder, psychosis and schizophrenia (including related psychotic disorders such as schizoaffective disorder, schizophreniform disorder and delusional disorder) in children and young people under 18. For more information see the bipolar disorder, psychosis and schizophrenia in children and young people topic overview.

Why this quality standard is needed

Bipolar disorder is a potentially lifelong and disabling condition characterised by episodes of mania (abnormally elevated mood or irritability and related symptoms, with severe functional impairment or psychotic symptoms for 7 days or more) or hypomania (abnormally elevated mood or irritability and related symptoms, with decreased or increased function for 4 days or more), alternating with episodes of depressed mood. Prevalence data for children and young people are limited. The peak age of onset is 15–19 years, and the condition is rare in children under 12 years. There is often a substantial delay between onset and first contact with mental health services.

Psychosis and the specific diagnosis of schizophrenia represent a major psychiatric disorder or cluster of disorders that alter a person's perception, thoughts, mood and behaviour. The symptoms of psychosis are usually divided into 'positive symptoms', including hallucinations (perception in the absence of any stimulus) and delusions (fixed or falsely held beliefs), and 'negative symptoms' (such as emotional apathy, lack of drive, poverty of speech, social withdrawal and self‑neglect). The prevalence of psychotic disorders in children aged between 5 and 18 years has been estimated to be 0.4%. Schizophrenia is very rare in pre‑pubertal children but incidence increases significantly from 15 years onwards.

Bipolar disorder, psychosis and schizophrenia are commonly preceded by a 'prodromal period', in which the child or young person's behaviour and experiences are altered. Not all children and young people who experience early symptoms will go on to develop bipolar disorder, psychosis or schizophrenia, but it is important to identify those at risk so that appropriate support can be provided.

The long‑term outlook for young people with psychosis and schizophrenia is worse when onset is in childhood or adolescence. Early referral to specialist mental health services is very important, so that appropriate interventions can be provided to improve outcomes and long‑term outlook.

Diagnosis of these conditions is complex, and diagnostic instability is usual in children and young people. Bipolar disorder is particularly difficult to diagnose in children and young people because of the nature of its presentation and complex comorbidities such as anxiety disorders, substance misuse, personality disorders and attention deficit hyperactivity disorder.

Treatment includes pharmacological and psychological interventions. Antipsychotic medication may be used for a limited period during episodes of mania or hypomania in young people with bipolar disorder. Antipsychotic medication is also the primary treatment for psychosis and schizophrenia, but there is limited evidence of its efficacy in children and young people. There are also concerns that children and young people are more sensitive than adults to the potential adverse effects of antipsychotics, including weight gain, metabolic effects and movement disorders. A range of psychological interventions are also offered to children and young people with bipolar depression, psychosis or schizophrenia, including individual therapies and family interventions. The provision of these therapies for children and young people is variable and evidence of efficacy is limited.

The care pathway for children and young people with bipolar disorder, psychosis or schizophrenia has many common elements, although it is important to note the differences in the approaches to treatment. This quality standard will focus both on areas of improvement that are common to these conditions, such as monitoring of antipsychotic medication, healthy lifestyle advice, education and carer support; as well as on condition‑specific improvements related to referral for assessment and family intervention.

The quality standard is expected to contribute to improvements in the following outcomes:

  • duration of untreated psychosis

  • severe mental illness premature mortality

  • hospital admissions

  • educational attainment

  • health‑related quality of life

  • service user experience of mental health services

  • quality of life for carers

  • detention rates under the Mental Health Act.

How this quality standard supports delivery of outcome frameworks

NICE quality standards are a concise set of prioritised statements designed to drive measurable improvements in the 3 dimensions of quality – patient safety, patient experience and clinical effectiveness – for a particular area of health or care. They are derived from high‑quality guidance, such as that from NICE or other sources accredited by NICE. This quality standard, in conjunction with the guidance on which it is based, should contribute to the improvements included in the following 3 outcomes frameworks published by the Department of Health:

Tables 1–3 show the outcomes, overarching indicators and improvement areas from the frameworks that the quality standard could contribute to achieving.

Table 1 NHS Outcomes Framework 2015–16

Domain

Overarching indicators and improvement areas

1 Preventing people from dying prematurely

Overarching indicator

1a Potential Years of Life Lost (PYLL) from causes considered amenable to healthcare

i Adults ii Children and young people

Improvement areas

Reducing premature mortality in people with mental illness

1.5i Excess under 75 mortality rate in adults with serious mental illness* (PHOF 4.9)

iii Suicide and mortality from injury of undetermined intent among people with recent contact from NHS services ** (PHOF 4.10)

2 Enhancing quality of life for people with long‑term conditions

Improvement areas

Enhancing quality of life for carers

2.4 Health‑related quality of life for carers** (ASCOF 1D)

Enhancing quality of life for people with mental illness

2.5i Employment of people with mental illness** (ASCOF 1F & PHOF 1.8)

ii Health‑related quality of life for people with mental illness** (ASCOF 1A & PHOF 1.6)

3 Helping people to recover from episodes of ill health or following injury

Improvement area

Improving outcomes from planned treatments

3.1 Total health gain as assessed by patients for elective procedures

ii Psychological therapies

iii Recovery in quality of life for patients with mental illness

4 Ensuring that people have a positive experience of care

Overarching indicators

4b Patient experience of hospital care

4c Friends and family test

4d Patient experience characterised as poor or worse

i Primary care

ii Hospital care

Improvement areas

Improving people's experience of outpatient care

4.1 Patient experience of outpatient services

Improving hospital's responsiveness to personal needs

4.2 Responsiveness to inpatients' personal needs

Improving experience of healthcare for people with mental illness

4.7 Patient experience of community mental health services

Improving children and young people's experience of healthcare

4.8 Children and young people's experience of inpatient services

Improving people's experience of integrated care

4.9 People's experience of integrated care** (ASCOF 3E)

Alignment with Adult Social Care Outcomes Framework and Public Health Outcomes Framework

* Indicator is shared

** Indicator is complementary

Indicators in italics are in development

Table 2 Public health outcomes framework for England, 2013–16

Domain

Objectives and indicators

1 Improving the wider determinants of health

Objective

Improvements against wider factors which affect health and wellbeing and health inequalities

Indicators

1.3 Pupil absence

1.5 16–18 year olds not in education, employment or training

1.8 Employment for those with long‑term health conditions including adults with a learning disability or who are in contact with secondary mental health services** (NHSOF 2.5i & ASCOF 1F)

2 Health improvement

Objective

People are helped to live healthy lifestyles, make healthy choices and reduce health inequalities

Indicators

2.9 Smoking prevalence – 15 year olds (Placeholder)

2.10 Self‑harm

2.14 Smoking prevalence – adults (over 18s)

4 Healthcare public health and preventing premature mortality

Objective

Reduced numbers of people living with preventable ill health and people dying prematurely, while reducing the gap between communities

Indicators

4.3 Mortality rate from causes considered preventable** (NHSOF 1a)

4.9 Excess under 75 mortality rate in adults with serious mental illness* (NHSOF 1.5)

4.10 Suicide rate

Alignment with Adult Social Care Outcomes Framework and Public Health Outcomes Framework

* Indicator is shared

** Indicator is complementary

Indicators in italics are in development

Table 3 The Adult Social Care Outcomes Framework 2015–16

Domain

Overarching and outcome measures

1 Enhancing quality of life for people with care and support needs

Carers can balance their caring roles and maintain their desired quality of life

1D Carer‑reported quality of life** (NHSOF 2.4)

People are able to find employment when they want, maintain a family and social life and contribute to community life, and avoid loneliness or isolation

1F Proportion of adults in contact with secondary mental health services in paid employment** (NHSOF 2.5i & PHOF 1.8)

3 Ensuring that people have a positive experience of care and support

People know what choices are available to them locally, what they are entitled to, and who to contact when they need help

3D The proportion of people who use services and carers who find it easy to find information about support

People who use social care and their carers are satisfied with their experience of care and support services

3E: The effectiveness of integrated care (Placeholder)** (NHSOF 4.9)

Alignment with NHS Outcomes Framework and/or Public Health Outcomes Framework

** Indicator is complementary

Indicators in italics in development

Patient experience and safety issues

Ensuring that care is safe and that people have a positive experience of care is vital in a high‑quality service. It is important to consider these factors when planning and delivering services relevant to bipolar disorder, psychosis and schizophrenia in children and young people.

Coordinated services

The quality standard for bipolar disorder, psychosis and schizophrenia in children and young people specifies that services should be commissioned from and coordinated across all relevant agencies encompassing the whole bipolar disorder or psychosis and schizophrenia care pathways. A person‑centred, integrated approach to providing services is fundamental to delivering high‑quality care to children and young people with bipolar disorder, psychosis or schizophrenia.

The Health and Social Care Act 2012 sets out a clear expectation that the care system should consider NICE quality standards in planning and delivering services, as part of a general duty to secure continuous improvement in quality. Commissioners and providers of health and social care should refer to the library of NICE quality standards when designing high‑quality services. Other quality standards that should also be considered when choosing, commissioning or providing high‑quality bipolar disorder or psychosis and schizophrenia services are listed in related quality standards.

Training and competencies

The quality standard should be read in the context of national and local guidelines on training and competencies. All health, social care and education practitioners involved in assessing, caring for and treating children and young people with bipolar disorder, psychosis or schizophrenia should have sufficient and appropriate training and competencies to deliver the actions and interventions described in the quality standard. Quality statements on staff training and competency are not usually included in quality standards. However, recommendations in the development sources on specific types of training for the topic that exceed standard professional training are considered during quality statement development.

Role of families and carers

Quality standards recognise the important role families and carers have in supporting children and young people with bipolar disorder, psychosis or schizophrenia. If appropriate, health and social care practitioners should ensure that family members and carers are involved in the decision‑making process about investigations, treatment and care. In line with the Care Act it is also important that health and social care practitioners recognise the need to give carers information and support in their own right.