Working safely and effectively with children and young people

1.1.1.

Health and social care professionals working with children and young people with psychosis or schizophrenia should be trained and competent to work with children and young people with mental health problems of all levels of learning ability, cognitive capacity, emotional maturity and development. [2013]

1.1.2.

Health and social care professionals should ensure that they:

• can assess capacity and competence, including ‘Gillick competence’, in children and young people of all ages, and
• understand how to apply legislation, including the Children Act (1989; amended 2004), the Mental Health Act (1983; amended 1995 and 2007^[1]) and the Mental Capacity Act (2005), in the care and treatment of children and young people. [2013]

1.1.3.

Consider children and young people with psychosis or schizophrenia for assessment according to local safeguarding procedures if there are concerns regarding exploitation or self-care, or if they have been in contact with the criminal justice system^[2]. [2013]

1.1.4.

Health and social care providers should ensure that children and young people with psychosis or schizophrenia:

• can routinely receive care and treatment from a single multidisciplinary community team
• are not passed from one team to another unnecessarily
• do not undergo multiple assessments unnecessarily^[2]. [2013]

1.1.5.

Help the child or young person to continue their education. Contact the school or college, subject to consent, to ask for additional educational support if their performance has been affected by their condition. [2013]

Establishing relationships with children and young people and their parents or carers

1.1.6.

Work in partnership with children and young people with psychosis or schizophrenia of an appropriate developmental level, emotional maturity and cognitive capacity and parents or carers. Offer help, treatment and care in an atmosphere of hope and optimism. Take time to build trusting, supportive, empathic and non-judgemental relationships as an essential part of care^[2]. [2013]

1.1.7.

When working with children and young people with psychosis or schizophrenia:

• aim to foster autonomy, promote active participation in treatment decisions, and support self-management and access to peer support in children and young people of an appropriate developmental level, emotional maturity and cognitive capacity
• maintain continuity of individual therapeutic relationships wherever possible
• offer access to a trained advocate^[2]. [2013]

1.1.8.

When working with children and young people with psychosis or schizophrenia and their parents or carers:

• make sure that discussions take place in settings in which confidentiality, privacy and dignity are respected
• be clear with the child or young person and their parents or carers about limits of confidentiality (that is, which health and social care professionals have access to information about their diagnosis and its treatment and in what circumstances this may be shared with others)^[2]. [2013]

1.1.9.

Discuss with young people with psychosis or schizophrenia of an appropriate developmental level, emotional maturity and cognitive capacity how they want their parents or carers to be involved in their care. Such discussions should take place at intervals to take account of any changes in circumstances, including developmental level, and should not happen only once^[2]. [2013]

1.1.10.

Advise parents and carers about their right to a formal carer’s assessment of their own physical and mental health needs, and explain how to access this^[2]. [2013]

Communication and information

1.1.11.

Health and social care professionals working with children and young people with psychosis or schizophrenia should be trained and skilled in:

• negotiating and working with parents and carers, and
• managing issues relating to information sharing and confidentiality as these apply to children and young people. [2013]

1.1.12.

If a young person is ‘Gillick competent’ ask them what information can be shared before discussing their condition and treatment with their parents or carers. [2013]

1.1.13.

When communicating with children and young people with psychosis or schizophrenia and their parents or carers:

• take into account the child or young person’s developmental level, emotional maturity and cognitive capacity including any learning disabilities, sight or hearing problems or delays in language development
• use plain language where possible and clearly explain any clinical language
• check that the child or young person and their parents or carers understand what is being said
• use communication aids (such as pictures, symbols, large print, braille, different languages or sign language) if needed. [2013]

1.1.14.

Provide children and young people with psychosis or schizophrenia and their parents or carers, comprehensive written information about:

• the nature of, and interventions for, psychosis and schizophrenia (including biomedical and psychosocial perspectives on causes and treatment) in an appropriate language or format, including any relevant ‘Information for the public’ booklets
• support groups, such as third sector, including voluntary, organisations^[2]. [2013]

1.1.15.

Ensure that you are:

• familiar with local and national sources (organisations and websites) of information and/or support for children and young people with psychosis or schizophrenia and their parents or carers
• able to discuss and advise how to access these resources
• able to discuss and actively support children and young people and their parents or carers to engage with these resources^[2]. [2013]

1.1.16.

When communicating with a child or young person with psychosis or schizophrenia, use diverse media, including letters, phone calls, emails or text messages, according to their preference^[2]. [2013]

1.1.17.

Copy all written communications with other health or social care professionals to the child or young person and/or their parents or carers at the address of their choice, unless this is declined^[2]. [2013]

Culture, ethnicity and social inclusion

1.1.18.

When working with children and young people with psychosis or schizophrenia and their parents or carers:

• take into account that stigma and discrimination are often associated with using mental health services
• be respectful of and sensitive to children and young people’s gender, sexual orientation, socioeconomic status, age, background (including cultural, ethnic and religious background) and any disability
• be aware of possible variations in the presentation of mental health problems in children and young people of different genders, ages, cultural, ethnic, religious or other diverse backgrounds^[2]. [2013]

1.1.19.

When working with children and young people and their parents or carers who have difficulties speaking or reading English:

• provide and work proficiently with interpreters if needed
• offer a list of local education providers who can provide English language teaching. [2013]

1.1.20.

Health and social care professionals working with children and young people with psychosis or schizophrenia and their parents or carers should have competence in:

• assessment skills for people from diverse ethnic and cultural backgrounds
• using explanatory models of illness for people from diverse ethnic and cultural backgrounds
• explaining the possible causes of psychosis and schizophrenia and treatment options
• addressing cultural and ethnic differences in treatment expectations and adherence
• addressing cultural and ethnic differences in beliefs regarding biological, social and family influences on the possible causes of mental health problems
• conflict management and conflict resolution^[3]. [2013]

1.1.21.

Health and social care professionals inexperienced in working with children and young people with psychosis or schizophrenia from diverse ethnic and cultural backgrounds, and their parents or carers, should seek advice and supervision from healthcare professionals who are experienced in working transculturally^[3]. [2013]

1.1.22.

Local mental health services should work with primary care, other secondary care and local third sector, including voluntary, organisations to ensure that:

• all children and young people with psychosis or schizophrenia have equal access to services based on clinical need and irrespective of gender, sexual orientation, socioeconomic status, age, background (including cultural, ethnic and religious background) and any disability
• services are culturally appropriate^[2]. [2013]

1.1.23.

Mental health services should work with local voluntary black and minority ethnic groups to jointly ensure that culturally appropriate psychological and psychosocial treatment, consistent with this guideline and delivered by competent practitioners, is provided to children and young people from diverse ethnic and cultural backgrounds^[3]. [2013]

Transfer and discharge

1.1.24.

Anticipate that withdrawal and ending of treatments or services, and transition from one service to another, may evoke strong emotions and reactions in children and young people with psychosis or schizophrenia and their parents or carers. Ensure that:

• such changes, especially discharge and transfer from CAMHS to adult services, or to primary care, are discussed and planned carefully beforehand with the child or young person and their parents or carers, and are structured and phased
• the care plan supports effective collaboration with social care and other care providers during endings and transitions, and includes details of how to access services in times of crisis
• when referring a child or young person for an assessment in other services (including for psychological interventions), they are supported during the referral period and arrangements for support are agreed beforehand with them^[2]. [2013]

Referral from primary care

1.2.1.

When a child or young person experiences transient or attenuated psychotic symptoms or other experiences suggestive of possible psychosis, refer for assessment without delay to a specialist mental health service such as CAMHS or an early intervention in psychosis service (14 years or over). [2013]

Assessment in specialist mental health services

1.2.2.

Carry out an assessment of the child or young person with possible psychosis, ensuring that:

• assessments in CAMHS include a consultant psychiatrist
• assessments in early intervention in psychosis services are multidisciplinary
• where there is considerable uncertainty about the diagnosis, or concern about underlying neurological illness, there is an assessment by a consultant psychiatrist with training in child and adolescent mental health. [2013]

1.2.3.

If a clear diagnosis of psychosis cannot be made, monitor regularly for further changes in symptoms and functioning for up to 3 years. Determine the frequency and duration of monitoring by:

• the severity and frequency of symptoms
• the level of impairment and/or distress in the child or young person, and
• the degree of family disruption or concern. [2013]

1.2.4.

If discharge from the service is requested, offer follow-up appointments and the option to self-refer at a later date. Ask the GP to continue monitoring changes in mental state. [2013]

Treatment options for symptoms not sufficient for a diagnosis of psychosis or schizophrenia

1.2.5.

When transient or attenuated psychotic symptoms or other mental state changes associated with distress, impairment or help-seeking behaviour are not sufficient for a diagnosis of psychosis or schizophrenia:

• consider individual cognitive behavioural therapy (CBT) (delivered as set out in recommendation 1.3.29) with or without family intervention (delivered as set out in recommendation 1.3.28), and
• offer treatments recommended in NICE guidance for children and young people with any of the anxiety disorders, depression, emerging personality disorder or substance misuse. [2013]

1.2.6.

Do not offer antipsychotic medication:

• for psychotic symptoms or mental state changes that are not sufficient for a diagnosis of psychosis or schizophrenia, or
• with the aim of decreasing the risk of psychosis. [2013]

Referral from primary care

1.3.1.

Urgently refer all children and young people with a first presentation of sustained psychotic symptoms (lasting 4 weeks or more) to a specialist mental health service, either CAMHS (up to 17 years) or an early intervention in psychosis service (14 years or over), which includes a consultant psychiatrist with training in child and adolescent mental health. [2013]

1.3.2.

Antipsychotic medication in children and young people with a first presentation of sustained psychotic symptoms should not be started in primary care unless it is done in consultation with a consultant psychiatrist with training in child and adolescent mental health. [2013]

Assessment and care planning in secondary care

1.3.3.

When carrying out an assessment:

• ensure there is enough time for:

  –

  the child or young person and their parents or carers to describe and discuss their problems

  –

  summarising the conclusions of the assessment and for discussion, with questions and answers

• explain and give written material in an accessible format about any diagnosis given
• give information about different treatment options, including pharmacological and psychological interventions, and their benefits and side effects, to promote discussion and shared understanding
• offer support after the assessment, particularly if sensitive issues, such as childhood trauma, have been discussed^[2]. [2013]

1.3.4.

Ensure that children and young people with first episode psychosis receive a comprehensive multidisciplinary assessment. The assessment should address the following domains:

• psychiatric (mental health problems, risk of harm to self or others, alcohol consumption and prescribed and non-prescribed drug history)
• medical, including medical history and full physical examination to identify physical illness (including organic brain disorders) and prescribed drug treatments that may result in psychosis
• psychological and psychosocial, including social networks, relationships and history of trauma
• developmental (social, cognitive and motor development and skills, including coexisting neurodevelopmental conditions)
• physical health and wellbeing (including weight and height, and information about smoking, diet and exercise, and sexual health)
• social (accommodation, culture and ethnicity, leisure activities and recreation, carer responsibilities [for example, of parents or siblings])
• educational and occupational (attendance at school or college, educational attainment, employment and functional activity)
• economic (family’s economic status). [2013]

1.3.5.

Routinely monitor for other coexisting mental health problems, including depression and anxiety, and substance misuse, particularly in the early phases of treatment^[3]. [2013]

1.3.6.

Develop a care plan with the parents or carers of younger children, or jointly with the young person and their parents or carers, as soon as possible, and:

• include activities that promote physical health and social inclusion, especially education, but also employment, volunteering and other occupations such as leisure activities
• provide support to help the child or young person and their parents or carers realise the plan
• give an up-to-date written copy of the care plan to the young person and their parents or carers if the young person agrees to this; give a copy of the care plan to the parents or carers of younger children; agree a suitable time to review it
• send a copy to the primary healthcare professional who made the referral^[2]. [2013]

1.3.7.

Support children and young people to develop strategies, including risk- and self-management plans, to promote and maintain independence and self-efficacy, wherever possible. Incorporate these strategies into the care plan^[2]. [2013]

1.3.8.

If the child or young person is at risk of crisis, develop a crisis plan with the parents or carers of younger children, or jointly with the young person and their parents or carers, and with their care coordinator. The plan should be respected and implemented, incorporated into the care plan and include:

• possible early warning signs of a crisis and coping strategies
• support available to help prevent hospitalisation
• where the child or young person would like to be admitted in the event of hospitalisation
• definitions of the roles of primary and secondary care professionals and the degree to which parents or carers are involved
• information about 24-hour access to services
• the names of key clinical contacts^[2]. [2013]

1.3.9.

For children and young people with first episode psychosis who are unable to attend mainstream school or college, facilitate alternative educational input in line with their capacity to engage with educational activity and according to their individual needs, with an ultimate goal of returning to mainstream education, training or employment. [2013]

1.3.10.

If the child or young person and/or their parent or carer is unhappy about the assessment, diagnosis or care plan, give them time to discuss this and offer them the opportunity for a second opinion^[2]. [2013]

Treatment options for first episode psychosis

1.3.11.

For children and young people with first episode psychosis offer:

• oral antipsychotic medication^[4] (see recommendations 1.3.14–1.3.26) in conjunction with
• psychological interventions (family intervention with individual CBT, delivered as set out in recommendations 1.3.27–1.3.33). [2013]

1.3.12.

If the child or young person and their parents or carers wish to try psychological interventions (family intervention with individual CBT) alone without antipsychotic medication, advise that psychological interventions are more effective when delivered in conjunction with antipsychotic medication. If the child or young person and their parents or carers still wish to try psychological interventions alone, then offer family intervention with individual CBT. Agree a time limit (1 month or less) for reviewing treatment options, including introducing antipsychotic medication. Continue to monitor symptoms, level of distress, impairment and level of functioning, including educational engagement and achievement, regularly. [2013]

1.3.13.

If the child or young person shows symptoms and behaviour sufficient for a diagnosis of an affective psychosis or disorder, including bipolar disorder and unipolar psychotic depression, follow the recommendations in bipolar disorder: assessment and management (NICE guideline CG185) or depression in children and young people: identification and management (NICE guideline CG28). [2013]

Choice of antipsychotic medication

1.3.14.

The choice of antipsychotic medication^[5] should be made by the parents or carers of younger children, or jointly with the young person and their parents or carers, and healthcare professionals. Provide age-appropriate information and discuss the likely benefits and possible side effects of each drug including:

• metabolic (including weight gain and diabetes)
• extrapyramidal (including akathisia, dyskinesia and dystonia)
• cardiovascular (including prolonging the QT interval)
• hormonal (including increasing plasma prolactin)
• other (including unpleasant subjective experiences). [2016]

1.3.15.

When choosing between olanzapine and other ‘second generation’ antipsychotic medications^[5], discuss with the young person and their parents or carers the increased likelihood of greater weight gain with olanzapine.

Inform them that this effect is likely to happen soon after starting treatment. [new 2016]

How to use oral antipsychotic medication

1.3.16.

Before starting antipsychotic medication^[4], undertake and record the following baseline investigations^[6]:

• weight and height (both plotted on a growth chart)
• waist and hip circumference
• pulse and blood pressure
• fasting blood glucose, glycosylated haemoglobin (HbA_1c), blood lipid profile and prolactin levels
• assessment of any movement disorders
• assessment of nutritional status, diet and level of physical activity. [2013]

1.3.17.

Before starting antipsychotic medication, offer the child or young person an electrocardiogram (ECG) if:

• specified in the SPC for adults and/or children
• a physical examination has identified specific cardiovascular risk (such as diagnosis of high blood pressure)
• there is a personal history of cardiovascular disease
• there is a family history of cardiovascular disease such as premature sudden cardiac death or prolonged QT interval, or
• the child or young person is being admitted as an inpatient^[3]. [2013]

1.3.18.

Treatment with antipsychotic medication^[4] should be considered an explicit individual therapeutic trial. Include the following:

• From a discussion with the child or young person and their parent or carer, record the side effects the child or young person is most and least willing to tolerate.
• Record the indications and expected benefits and risks of oral antipsychotic medication, and the expected time for a change in symptoms and appearance of side effects.
• At the start of treatment give a dose below the lower end of the licensed range for adults if the drug is not licensed for children and young people and at the lower end of the licensed range if the drug is licensed for children and young people; slowly titrate upwards within the dose range given in the British national formulary (BNF), the British national formulary for children (BNFC) or the SPC.
• Justify and record reasons for dosages above the range given in the BNF, BNFC or SPC.
• Record the rationale for continuing, changing or stopping medication, and the effects of such changes.
• Carry out a trial of the medication at optimum dosage for 4–6 weeks^[3]. [2013]

1.3.19.

Monitor and record the following regularly and systematically throughout treatment, but especially during titration^[6]:

• efficacy, including changes in symptoms and behaviour
• side effects of treatment, taking into account overlap between certain side effects and clinical features of schizophrenia (for example, the overlap between akathisia and agitation or anxiety)
• the emergence of movement disorders
• weight, weekly for the first 6 weeks, then at 12 weeks and then every 6 months (plotted on a growth chart)
• height every 6 months (plotted on a growth chart)
• waist circumference every 6 months (plotted on a percentile chart)
• pulse and blood pressure (plotted on a percentile chart) at 12 weeks and then every 6 months
• fasting blood glucose, HbA1c, blood lipid and prolactin levels at 12 weeks and then every 6 months
• adherence
• physical health.

The secondary care team should maintain responsibility for monitoring physical health and the effects of antipsychotic medication in children and young people for at least the first 12 months or until their condition has stabilised. Thereafter, the responsibility for this monitoring may be transferred to primary care under shared care arrangements. [2013]

1.3.20.

Discuss any non-prescribed therapies that children or young people, or their parents or carers, wish to use (including complementary therapies) with them. Discuss the safety and efficacy of the therapies, and possible interference with the therapeutic effects of prescribed medication and psychological interventions^[3]. [2013]

1.3.21.

Discuss the use of alcohol, tobacco, prescription and non-prescription medication and illicit drugs with the child or young person, and their parents or carers where this has been agreed. Discuss their possible interference with the therapeutic effects of prescribed medication and psychological interventions and the potential of illicit drugs to exacerbate psychotic symptoms^[3]. [2013]

1.3.22.

‘As required’ (p.r.n.) prescriptions of antipsychotic medication should be made as described in recommendation 1.3.18. Review clinical indications, frequency of administration, therapeutic benefits and side effects at least weekly. Check whether ‘p.r.n.’ prescriptions have led to a dosage above the maximum specified in the BNF, BNFC or SPC^[3]. [2013]

1.3.23.

Do not use a loading dose of antipsychotic medication (often referred to as ‘rapid neuroleptisation’)^[3]. [2013]

1.3.24.

Do not initiate regular combined antipsychotic medication, except for short periods (for example, when changing medication)^[3]. [2013]

1.3.25.

If prescribing chlorpromazine, warn of its potential to cause skin photosensitivity. Advise using sunscreen if necessary^[3]. [2013]

1.3.26.

Review antipsychotic medication annually, including observed benefits and any side effects. [2013]

How to deliver psychological interventions

1.3.27.

When delivering psychological interventions for children and young people with psychosis or schizophrenia, take into account their developmental level, emotional maturity and cognitive capacity, including any learning disabilities, sight or hearing problems or delays in language development. [2013]

1.3.28.

Family intervention should:

• include the child or young person with psychosis or schizophrenia if practical
• be carried out for between 3 months and 1 year
• include at least 10 planned sessions
• take account of the whole family’s preference for either single-family intervention or multi-family group intervention
• take account of the relationship between the parent or carer and the child or young person with psychosis or schizophrenia
• have a specific supportive, educational or treatment function and include negotiated problem solving or crisis management work^[3]. [2013]

1.3.29.

CBT should be delivered on a one-to-one basis over at least 16 planned sessions (although longer may be needed) and:

• follow a treatment manual^[7] so that:

  –

  children and young people can establish links between their thoughts, feelings or actions and their current or past symptoms, and/or functioning

  –

  the re-evaluation of the child or young person’s perceptions, beliefs or reasoning relates to the target symptoms

• also include at least one of the following components:

  –

  normalising, leading to understanding and acceptability of their experience

  –

  children and young people monitoring their own thoughts, feelings or behaviours with respect to their symptoms or recurrence of symptoms

  –

  promoting alternative ways of coping with the target symptom

  –

  reducing distress

• improving functioning^[3]. [2013]

Monitoring and reviewing psychological interventions

1.3.30.

When providing psychological interventions, routinely and systematically monitor a range of outcomes across relevant areas, including the child or young person’s satisfaction and, if appropriate, parents’ or carers’ satisfaction^[3]. [2013]

1.3.31.

Healthcare teams working with children and young people with psychosis or schizophrenia should identify a lead healthcare professional within the team whose responsibility is to monitor and review:

• access to and engagement with psychological interventions
• decisions to offer psychological interventions and equality of access across different ethnic groups^[3]. [2013]

Competencies for delivering psychological interventions

1.3.32.

Healthcare professionals delivering psychological interventions should:

• have an appropriate level of competence in delivering the intervention to children and young people with psychosis or schizophrenia
• be regularly supervised during psychological therapy by a competent therapist and supervisor^[3]. [2013]

1.3.33.

Trusts should provide access to training that equips healthcare professionals with the competencies required to deliver the psychological interventions for children and young people recommended in this guideline^[3].[2013]

Pharmacological interventions

1.4.2.

For children or young people with an acute exacerbation or recurrence of psychosis or schizophrenia, offer oral antipsychotic medication or review existing medication^[4]. The choice of drug should be influenced by the same criteria recommended for starting treatment (see recommendations 1.3.14–1.3.26). Take into account the clinical response to and side effects associated with current and previous medication, and monitor as described in recommendation 1.3.19^[3]. [2013]

1.4.3.

Aripiprazole is recommended as an option for the treatment of schizophrenia in people aged 15 to 17 years who are intolerant of risperidone, or for whom risperidone is contraindicated, or whose schizophrenia has not been adequately controlled with risperidone. [This recommendation is from Aripiprazole for the treatment of schizophrenia in people aged 15 to 17 years (NICE technology appraisal guidance 213).] [2013]

Psychological and psychosocial interventions

1.4.4.

Offer family intervention (delivered as set out in recommendation 1.3.28) to all families of children and young people with psychosis or schizophrenia, particularly for preventing and reducing relapse. This can be started either during the acute phase or later, including in inpatient settings^[3]. [2013]

1.4.5.

Offer CBT (delivered as set out in recommendation 1.3.29) to all children and young people with psychosis or schizophrenia, particularly for symptom reduction. This can be started either during the acute phase or later, including in inpatient settings^[3]. [2013]

1.4.6.

Consider arts therapies (for example, dance movement, music or art therapy or dramatherapy) for all children and young people with psychosis or schizophrenia, particularly for the alleviation of negative symptoms. This can be started either during the acute phase or later, including in inpatient settings^[3]. [2013]

1.4.7.

If arts therapies are considered, they should be provided by Health Professions Council (HPC) registered arts therapists, with experience of working with children and young people with psychosis or schizophrenia. The intervention should be provided in groups unless difficulties with acceptability and access and engagement indicate otherwise. Arts therapies should combine psychotherapeutic techniques with activity aimed at promoting creative expression, which is often unstructured and led by the child or young person. Aims of arts therapies should include:

• enabling children and young people with psychosis or schizophrenia to experience themselves differently and to develop new ways of relating to others
• helping children and young people to express themselves and to organise their experience into a satisfying aesthetic form
• helping children and young people to accept and understand feelings that may have emerged during the creative process (including, in some cases, how they came to have these feelings) at a pace suited to them^[3]. [2013]

1.4.8.

Do not routinely offer counselling and supportive psychotherapy (as specific interventions) to children and young people with psychosis or schizophrenia. However, take the child or young person’s and their parents’ or carers’ preferences into account, especially if other more efficacious psychological interventions, such as CBT, family intervention and arts therapies, are not available locally^[3]. [2013]

1.4.9.

Do not offer adherence therapy (as a specific intervention) to children and young people with psychosis or schizophrenia^[3]. [2013]

1.4.10.

Do not routinely offer social skills training (as a specific intervention) to children and young people with psychosis or schizophrenia^[3]. [2013]

1.4.11.

When psychological interventions, including arts therapies, are started in the acute phase (including in inpatient settings), the full course should be continued after discharge without unnecessary interruption^[3]. [2013]

Hospital care

1.5.6.

If a child or young person needs hospital care, this should be in a setting appropriate to their age and developmental level. [2013]

1.5.7.

Before referral for hospital care, think about the impact on the child or young person and their parents, carers and other family members, especially when the inpatient unit is a long way from where they live. Consider alternative care within the community wherever possible. If hospital admission is unavoidable, provide support for parents or carers when the child or young person is admitted. [2013]

1.5.8.

Give verbal and written information to children and young people with psychosis or schizophrenia admitted to hospital, and their parents or carers, about:

• the hospital and the ward in which the child or young person will stay
• treatments, activities and services available
• expected contact from health and social care professionals
• rules of the ward (including substance misuse policy)
• their rights, responsibilities and freedom to move around the ward and outside
• meal times
• visiting arrangements.

Make sure there is enough time for the child or young person and their parents or carers to ask questions^[2]. [2013]

1.5.9.

Undertake shared decision-making routinely with children or young people in hospital who are of an appropriate developmental level, emotional maturity and cognitive capacity, including, whenever possible, those who are subject to the Mental Health Act (1983; amended 1995 and 2007). Include their parents or carers if appropriate^[2]. [2013]

1.5.10.

Ensure that children and young people of compulsory school age have access to a full educational programme while in hospital. The programme should meet the National Curriculum, be matched to the child or young person’s developmental level and educational attainment, and should take account of their illness and degree of impairment. [2013]

1.5.11.

Ensure that children and young people in hospital continue to have access to a wide range of meaningful and culturally appropriate occupations and activities 7 days per week, and not restricted to 9am to 5pm. These should include creative and leisure activities, exercise, self-care and community access activities (where appropriate). Activities should be facilitated by appropriately trained educational, health or social care professionals^[2]. [2013]

1.5.12.

Children and young people receiving community care before hospital admission should be routinely visited while in hospital by the health and social care professionals responsible for their community care^[2]. [2013]

1.5.13.

Promote good physical health, including healthy eating, exercise and smoking cessation. [2013]

Rapid tranquillisation and restraint

1.5.14.

Healthcare professionals undertaking rapid tranquillisation and/or restraint in children and young people with psychosis or schizophrenia should be trained and competent in undertaking these procedures in children and young people. [2013]

1.5.15.

Occasionally children and young people with psychosis or schizophrenia pose an immediate risk to themselves or others during an acute episode and may need rapid tranquillisation. Be particularly cautious when considering high-potency antipsychotic medication (such as haloperidol) in children and young people, especially those who have not taken antipsychotic medication before, because of the increased risk of acute dystonic reactions in that age group^[3]. [2013]

1.5.16.

After rapid tranquillisation, offer the child or young person the opportunity to discuss their experiences. Provide them with a clear explanation of the decision to use urgent sedation. Record this in their notes^[3]. [2013]

Psychological interventions

1.8.2.

Offer family intervention to families of children and young people with psychosis or schizophrenia to promote recovery. Deliver family intervention as described in recommendation 1.3.28^[3]. [2013]

1.8.3.

Consider family intervention particularly for families of children and young people with psychosis or schizophrenia who have:

• recently relapsed or are at risk of relapse
• persisting symptoms^[3]. [2013]

1.8.4.

Offer CBT to assist in promoting recovery in children and young people with persisting positive and negative symptoms and for those in remission. Deliver CBT as described in recommendation 1.3.29^[3]. [2013]

1.8.5.

Consider arts therapies (see recommendation 1.4.7) to assist in promoting recovery, particularly in children and young people with negative symptoms^[3]. [2013]

Pharmacological interventions

1.8.6.

The choice of drug^[4] should be influenced by the same criteria recommended for starting treatment (see recommendations 1.3.14–1.3.26)^[3]. [2013]

1.8.7.

Do not use targeted, intermittent dosage maintenance strategies^[9] routinely. However, consider them for children and young people with psychosis or schizophrenia who are unwilling to accept a continuous maintenance regimen or if there is another contraindication to maintenance therapy, such as side-effect sensitivity^[3]. [2013]

Interventions for children and young people whose illness has not responded adequately to treatment

1.8.8.

For children and young people with psychosis or schizophrenia whose illness has not responded adequately to pharmacological or psychological interventions:

• review the diagnosis
• establish that there has been adherence to antipsychotic medication^[4], prescribed at an adequate dose and for the correct duration
• review engagement with and use of psychological interventions and ensure that these have been offered according to this guideline; if family intervention has been undertaken suggest CBT; if CBT has been undertaken suggest family intervention for children and young people in close contact with their families
• consider other causes of non-response, such as comorbid substance misuse (including alcohol), the concurrent use of other prescribed medication or physical illness^[3]. [2013]

1.8.9.

Offer clozapine^[4] to children and young people with schizophrenia whose illness has not responded adequately to pharmacological treatment despite the sequential use of adequate doses of at least two different antipsychotic drugs each used for 6–8 weeks^[3]. [2013]

1.8.10.

For children and young people whose illness has not responded adequately to clozapine^[4] at an optimised dose, consider a multidisciplinary review, and recommendation 1.8.8 (including measuring therapeutic drug levels) before adding a second antipsychotic to augment treatment with clozapine. An adequate trial of such an augmentation may need to be up to 8–10 weeks. Choose a drug that does not compound the common side effects of clozapine^[3]. [2013]

Education, employment and occupational activities for children and young people with psychosis and schizophrenia

1.8.11.

For children and young people of compulsory school age, liaise with the child or young person’s school and educational authority, subject to consent, to ensure that ongoing education is provided. [2013]

1.8.12.

Liaise with the child or young person’s school and with their parents or carers, subject to consent, to determine whether a special educational needs assessment is necessary. If it is agreed that this is needed, explain to parents or carers how to apply for an assessment and offer support throughout the process. [2013]

1.8.13.

Provide supported employment programmes for those young people with psychosis or schizophrenia above compulsory school age who wish to return to work or find employment. Consider other work-related activities and programmes when individuals are unable to work or are unsuccessful in their attempts to find employment^[3]. [2013]

1.8.14.

Mental health services should work in partnership with local stakeholders, including those representing black and minority ethnic groups, to enable young people with psychosis or schizophrenia to access local employment and educational opportunities. This should be sensitive to the young person’s needs and skill level and is likely to involve working with agencies such as Jobcentre Plus, disability employment advisers and non-statutory providers^[3]. [2013]

1.8.15.

Routinely record the daytime activities of children and young people with psychosis or schizophrenia in their care plans, including educational and occupational outcomes^[3]. [2013]

Why this is important

A major problem with trials of treatments for populations of children and young people deemed to be ‘at risk’ or ‘at ultra-high risk’ of developing psychosis is identifying the precise symptoms and/or behaviours or (risk) factors that are most strongly associated with the development of psychosis; and conversely, which (protective) factors are likely to be associated with a lowered risk of later psychosis. At present, identified factors have a low predictive value, with only about 10–20% of children and young people who have been identified as at high risk going on to develop psychosis. If these risk and protective factors could be refined, it would be possible to better target children and young people who are most at risk, and reduce the numbers of those thought to be ‘at risk’ who do not go on to later develop psychosis.

Why this is important

A number of interventions have been trialled in an attempt to avert the development of psychosis, including drugs, psychological interventions and other interventions. A relatively recent, moderate-sized randomised controlled trial of omega-3 fatty acids has shown the best evidence of any intervention, to date, reducing the rates of transition from ‘high risk’ states to a sustained psychosis. However, this is a single trial, which is underpowered, undertaken in one centre and lacks any health economic analysis.

Why this is important

A number of interventions have been trialled in an attempt to avert the development of psychosis, including drugs, psychological interventions and other interventions. After the first episode of psychosis, family intervention as an adjunct to antipsychotic medication substantially and significantly reduces relapse rates. A single small trial combining CBT family treatment with individual CBT without antipsychotic treatment suggested an important reduction in transition rates to the first psychosis.

Why this is important

The personal and financial cost of psychosis and schizophrenia to the person, their family and friends, and to society is considerable. The personal cost is reflected in a suicide rate of nearly 15% among people with schizophrenia, a lifelong unemployment rate that varies between 50 and 75%, depending on geographical location, and reduced life expectancy. The additional cost to the healthcare system for one person with schizophrenia is estimated to reach over £50,000 per year, on average, throughout their life.

Currently, the mainstay of treatment is antipsychotic medication, but the potential adverse effects are such that there is considerable impetus to develop alternative treatment strategies to allow either lower doses or to remove the need for medication entirely. It has been recognised that psychological interventions as an adjunct to antipsychotic medication have an important part to play in the treatment of schizophrenia. NICE guideline CG82 identified family intervention and CBT as adjunct treatments and current evidence suggests that these interventions are cost saving. However, evidence for adjunctive family intervention and CBT is lacking in children and young people with psychosis. Furthermore, there has been one recent positive trial of CBT as a first-line treatment, without antipsychotics, for young people in the early stages of psychosis.

Why this is important

Currently, about 30% of people with schizophrenia have symptoms that do not respond adequately to treatment with an antipsychotic. Although precise figures are unavailable, especially for children and young people, smaller percentages of people do not respond when a second, alternative, antipsychotic and an adequate course of psychological treatment have been tried. For these people, clozapine, which has a different dopamine receptor subtype blocking profile from other antipsychotics, has become an important treatment option in adults. However, evidence is lacking (only one study) about the effectiveness of clozapine for ‘treatment-resistant schizophrenia’ in children and young people.

Why this is important

Rapid weight gain associated with antipsychotic medication and poor physical health (smoking, lack of exercise) leading to type 2 diabetes and metabolic syndrome are major sources of morbidity and premature mortality in young people with psychosis and schizophrenia. Most evidence of adverse effects comes from short-term studies of antipsychotics (maximum 8–12 weeks). In contrast, very little is known about the longer term adverse effects of these drugs. Evidence is needed both on longer term adverse effects as well as on effective early intervention strategies that reduce these risk factors and improve physical health outcomes.