Guidance

Recommendations

Recommendations

People have the right to be involved in discussions and make informed decisions about their care, as described in making decisions about your care.

Making decisions using NICE guidelines explains how we use words to show the strength (or certainty) of our recommendations, and has information about prescribing medicines (including off-label use), professional guidelines, standards and laws (including on consent and mental capacity), and safeguarding.

1.1 General principles of care

Working with people with a learning disability and behaviour that challenges, and their families and carers

1.1.1

Work in partnership with children, young people and adults who have a learning disability and behaviour that challenges, and their family members or carers, and:

  • involve them in decisions about care

  • support self‑management and encourage the person to be independent

  • build and maintain a continuing, trusting and non-judgemental relationship

  • provide information:

    • about the nature of the person's needs, and the range of interventions (for example, environmental, psychological and pharmacological interventions) and services available to them

    • in a format and language appropriate to the person's cognitive and developmental level (including spoken and picture formats, and written versions in Easy Read style and different colours and fonts)

  • develop a shared understanding about the function of the behaviour

  • help family members and carers to provide the level of support they feel able to.

1.1.2

When providing support and interventions for people with a learning disability and behaviour that challenges, and their family members or carers:

  • take into account the severity of the person's learning disability, their developmental stage, and any communication difficulties or physical or mental health problems

  • aim to provide support and interventions:

    • in the least restrictive setting, such as the person's home, or as close to their home as possible, and

    • in other places where the person regularly spends time (for example, school or residential care)

  • aim to prevent, reduce or stop the development of future episodes of behaviour that challenges

  • aim to improve quality of life

  • offer support and interventions respectfully

  • ensure that the focus is on improving the person's support and increasing their skills rather than changing the person

  • ensure that they know who to contact if they are concerned about care or interventions, including the right to a second opinion

  • offer independent advocacy to the person and to their family members or carers.

Understanding learning disabilities and behaviour that challenges

1.1.3

Everyone involved in commissioning or delivering support and interventions for people with a learning disability and behaviour that challenges (including family members and carers) should understand:

  • the nature and development of learning disabilities

  • personal and environmental factors related to the development and maintenance of behaviour that challenges

  • that behaviour that challenges often indicates an unmet need

  • the effect of learning disabilities and behaviour that challenges on the person's personal, social, educational and occupational functioning

  • the effect of the social and physical environment on learning disabilities and behaviour that challenges (and vice versa), including how staff and carer responses to the behaviour may maintain it.

Delivering effective care

1.1.4

Health and social care provider organisations should ensure that teams carrying out assessments and delivering interventions recommended in this guideline have the training and supervision needed to ensure that they have the necessary skills and competencies.

1.1.5

If initial assessment (see section 1.5) and management have not been effective, or the person has more complex needs, health and social care provider organisations should ensure that teams providing care have prompt and coordinated access to specialist assessment, support and intervention services. These services should provide advice, supervision and training from a range of staff to support the implementation of any care or intervention, including psychologists, psychiatrists, behavioural analysts, nurses, social care staff, speech and language therapists, educational staff, occupational therapists, physiotherapists, physicians, paediatricians and pharmacists.

Staff training, supervision and support

1.1.6

Health and social care provider organisations should ensure that all staff working with people with a learning disability and behaviour that challenges are trained to deliver proactive strategies to reduce the risk of behaviour that challenges, including:

  • developing personalised daily activities

  • adapting a person's environment and routine

  • strategies to help the person develop an alternative behaviour to achieve the same purpose by developing a new skill (for example, improved communication, emotional regulation or social interaction)

  • the importance of including people, and their family members or carers, in planning support and interventions

  • strategies designed to calm and divert the person if they show early signs of distress

  • delivering reactive strategies.

1.1.7

Health and social care provider organisations should ensure that all staff get personal and emotional support to:

  • enable them to deliver interventions effectively for people with a learning disability and behaviour that challenges

  • feel able to seek help for difficulties arising from working with people with a learning disability and behaviour that challenges

  • recognise and manage their own stress.

1.1.8

Health and social care provider organisations should ensure that all interventions for behaviour that challenges are delivered by competent staff. Staff should:

  • receive regular high‑quality supervision that takes into account the impact of individual, social and environmental factors

  • deliver interventions based on the relevant treatment manuals

  • consider using routine outcome measures at each contact (for example, the Adaptive Behavior Scale and the Aberrant Behavior Checklist)

  • take part in monitoring (for example, by using Periodic Service Review methods)

  • evaluate adherence to interventions and practitioner competence (for example, by using video and audio recording, and external audit and scrutiny).

Organising effective care

The recommendations in this section are adapted from the NICE guideline on common mental health disorders.

1.1.9

A designated leadership team of healthcare professionals, educational staff, social care practitioners, managers and health and local authority commissioners should develop care pathways for people with a learning disability and behaviour that challenges for the effective delivery of care and the transition between and within services that are:

  • negotiable, workable and understandable for people with a learning disability and behaviour that challenges, their family members or carers, and staff

  • accessible and acceptable to people using the services, and responsive to their needs

  • integrated (to avoid barriers to movement between different parts of the care pathways)

  • focused on outcomes (including measures of quality, service-user experience and harm).

1.1.10

The designated leadership team should be responsible for developing, managing and evaluating care pathways, including:

  • developing clear policies and protocols for care pathway operation

  • providing training and support on care pathway operation

  • auditing and reviewing care pathway performance.

1.1.11

The designated leadership team should work together to design care pathways that promote a range of evidence-based interventions and support people in their choice of interventions.

1.1.12

The designated leadership team should work together to design care pathways that respond promptly and effectively to the changing needs of the people they serve and have:

  • clear and agreed goals for the services offered

  • robust and effective ways to measure and evaluate the outcomes associated with the agreed goals.

1.1.13

The designated leadership team should work together to design care pathways that provide an integrated programme of care across all care services and:

  • minimise the need for transition between different services or providers

  • provide the least restrictive alternatives for people with behaviour that challenges

  • allow services to be built around the care pathway (and not the other way around)

  • establish clear links (including access and entry points) to other care pathways (including those for physical healthcare needs)

  • have designated staff who are responsible for coordinating people's engagement with a care pathway and transition between services within and between care pathways.

1.1.14

The designated leadership team should work together to ensure effective communication about the functioning of care pathways. There should be protocols for sharing information:

  • with people with a learning disability and behaviour that challenges, and their family members or carers (if appropriate), about their care

  • about a person's care with other staff (including GPs)

  • with all the services provided in the care pathway

  • with services outside the care pathway.

1.2 Physical healthcare

1.2.1

GPs should offer an annual physical health check to children, young people and adults with a learning disability in all settings, using a standardised template (such as the Cardiff health check template). This should be carried out together with a family member, carer or healthcare professional or social care practitioner who knows the person and include:

1.3 Support and interventions for family members or carers

1.3.1

Involve family members or carers in developing and delivering the support and intervention plan for children, young people and adults with a learning disability and behaviour that challenges. Give them information about support and interventions in a format and language that is easy to understand, including NICE's 'Information for the public'.

1.3.2

Advise family members or carers about their right to carer assessment, and assessment for respite care and other support (see the NICE guideline on supporting adult carers for recommendations on identifying, assessing and meeting the caring, physical and mental health needs of families and carers).

1.3.3

When providing support to family members or carers (including siblings):

  • recognise the impact of living with or caring for a person with a learning disability and behaviour that challenges

  • explain how to access family advocacy

  • consider family support and information groups if there is a risk of behaviour that challenges, or it is emerging

  • consider formal support through disability‑specific support groups for family members or carers and regular assessment of the extent and severity of the behaviour that challenges

  • provide skills training and emotional support, or information about these, to help them take part in and support interventions for the person with a learning disability and behaviour that challenges.

1.3.4

If a family member or carer has an identified mental health problem, consider:

  • interventions in line with existing NICE guidelines or

  • referral to a mental health professional who can provide interventions in line with existing NICE guidelines.

1.4 Early identification of the emergence of behaviour that challenges

1.4.1

Everyone involved in caring for and supporting children, young people and adults with a learning disability (including family members and carers) should understand the risk of behaviour that challenges and that it often develops gradually. Pay attention to and record factors that may increase this risk, including:

  • personal factors, such as:

    • a severe learning disability

    • autism

    • dementia

    • communication difficulties (expressive and receptive)

    • visual impairment (which may lead to increased self-injury and stereotypy)

    • physical health problems

    • variations with age (peaking in the teens and twenties)

  • environmental factors, such as:

    • abusive or restrictive social environments

    • environments with little or too much sensory stimulation and those with low engagement levels (for example, little interaction with staff)

    • developmentally inappropriate environments (for example, a curriculum that makes too many demands on a child or young person)

    • environments where disrespectful social relationships and poor communication are typical or where staff do not have the capacity or resources to respond to people's needs

    • changes to the person's environment (for example, significant staff changes or moving to a new care setting).

1.4.2

Consider using direct observation and recording or formal rating scales (for example, the Adaptive Behavior Scale or Aberrant Behavior Checklist) to monitor the development of behaviour that challenges.

1.5 Assessment of behaviour that challenges

The assessment process

1.5.1

When assessing behaviour that challenges shown by children, young people and adults with a learning disability follow a phased approach, aiming to gain a functional understanding of why the behaviour occurs. Start with initial assessment and move on to further assessment if, for example, intervention has not been effective or the function of the behaviour is not clear (see recommendations 1.5.4–1.5.11). Develop a behaviour support plan (see recommendation 1.6.1) as soon as possible.

1.5.2

When assessing behaviour that challenges ensure that:

  • the person being assessed remains at the centre of concern and is supported throughout the process

  • the person and their family members and carers are fully involved in the assessment process

  • the complexity and duration of the assessment process is proportionate to the severity, impact, frequency and duration of the behaviour

  • everyone involved in delivering assessments understands the criteria for moving to more complex and intensive assessment (see recommendation 1.5.8)

  • all current and past personal and environmental factors (including care and educational settings) that may lead to behaviour that challenges are taken into account

  • assessment is a flexible and continuing (rather than a fixed) process, because factors that trigger and maintain behaviour may change over time

  • assessments are reviewed after any significant change in behaviour

  • assessments are focused on the outcomes of reducing behaviour that challenges and improving quality of life

  • the resilience, resources and skills of family members and carers are taken into account

  • the capacity, sustainability and commitment of the staff delivering the behaviour support plan (see recommendation 1.6.1) are taken into account.

1.5.3

Explain to the person and their family members or carers how they will be told about the outcome of any assessment of behaviour that challenges. Ensure that feedback is personalised and involves a family member, carer or advocate to support the person and help them to understand the feedback if needed.

Initial assessment of behaviour that challenges

1.5.4

If behaviour that challenges is emerging or apparent, or a family member, carer or member of staff (such as a teacher or care worker), has concerns about behaviour, carry out initial assessment that includes:

  • a description of the behaviour (including its severity, frequency, duration and impact on the person and others) from the person (if possible) and a family member, carer or a member of staff (such as a teacher or care worker)

  • an explanation of the personal and environmental factors involved in developing or maintaining the behaviour from the person (if possible) and a family member, carer or a member of staff (such as a teacher or care worker)

  • the role of the service, staff, family members or carers in developing or maintaining the behaviour.

    Consider using a formal rating scale (for example, the Aberrant Behavior Checklist or Adaptive Behavior Scale) to provide baseline levels for the behaviour and a scale (such as the Functional Analysis Screening Tool) to help understand its function.

1.5.5

As part of initial assessment of behaviour that challenges, take into account:

  • the person's abilities and needs (in particular, their expressive communication and receptive communication)

  • any physical or mental health problems, and the effect of medication, including side effects

  • developmental history, including neurodevelopmental problems (including the severity of the learning disability and the presence of autism or other behavioural phenotypes)

  • response to any previous interventions for behaviour that challenges

  • the impact of the behaviour that challenges on the person's:

    • quality of life and that of their family members or carers

    • independent living skills and educational or occupational abilities

  • social and interpersonal history, including relationships with family members, carers, staff (such as teachers) or other people with a learning disability (such as those the person lives with)

  • aspects of the person's culture that could be relevant to the behaviour that challenges

  • life history, including any history of trauma or abuse

  • recent life events and changes to routine

  • the person's sensory profile, preferences and needs

  • the physical environment, including heat, light, noise and smell

  • the care environment, including the range of activities available, how it engages people and promotes choice, and how well structured it is.

1.5.6

After initial assessment, develop a written statement (formulation) that sets out an understanding of what has led to the behaviour that challenges and the function of the behaviour. Use this to develop a behaviour support plan (see recommendation 1.6.1).

Risk assessment

1.5.7

Assess and regularly review the following areas of risk during any assessment of behaviour that challenges:

  • suicidal ideation, self-harm (in particular in people with depression) and self-injury

  • harm to others

  • self-neglect

  • breakdown of family or residential support

  • exploitation, abuse or neglect by others

  • rapid escalation of the behaviour that challenges.

    Ensure that the behaviour support plan includes risk management (see recommendation 1.6.1).

Further assessment of behaviour that challenges

1.5.8

If the behaviour that challenges is severe or complex, or does not respond to the behaviour support plan, review the plan and carry out further assessment that is multidisciplinary and draws on skills from specialist services (see recommendation 1.1.5), covering any areas not fully explored by initial assessment (see recommendation 1.5.5). Carry out a functional assessment (see recommendations 1.5.9–1.5.11), identifying and evaluating any factors that may provoke or maintain the behaviour. Consider using formal (for example, the Adaptive Behavior Scale or the Aberrant Behavior Checklist) and idiographic (personalised) measures to assess the severity of the behaviour and the progress of any intervention.

Functional assessment of behaviour

1.5.9

Carry out a functional assessment of the behaviour that challenges to help inform decisions about interventions. This should include:

  • a clear description of the behaviour, including classes or sequences of behaviours that typically occur together

  • identifying the events, times and situations that predict when the behaviour will and will not occur across the full range of the person's daily routines and usual environments

  • identifying the consequences (or reinforcers) that maintain the behaviour (that is, the function or purpose that the behaviour serves)

  • developing summary statements or hypotheses that describe the relationships between personal and environmental triggers, the behaviour and its reinforcers

  • collecting direct observational data to inform the summary statements or hypotheses.

1.5.10

Include the following in a functional assessment:

  • a baseline measurement of current behaviour, and its frequency and intensity, and repeated measurements in order to evaluate change

  • measurements including direct observations and scales such as the Aberrant Behavior Checklist and self-reporting

  • a baseline measurement of quality of life (such as the Life Experiences Checklist and the Quality of Life Questionnaire)

  • assessment of the impact of current or past interventions, including reactive strategies.

1.5.11

Vary the complexity and intensity of the functional assessment according to the complexity and intensity of behaviour that challenges, following a phased approach as set out below.

  • Carry out pre‑assessment data gathering to help shape the focus and level of the assessment.

  • For recent‑onset behaviour that challenges, consider brief structured assessments such as the Functional Analysis Screening Tool or Motivation Assessment Scale to identify relationships between the behaviour and what triggers and reinforces it.

  • For recent‑onset behaviour that challenges, or marked changes in patterns of existing behaviours, take into account whether any significant alterations to the person's environment and physical or psychological health are associated with the development or maintenance of the behaviour.

  • Consider in‑depth assessment involving interviews with family members, carers and others, direct observations, structured record keeping, questionnaires and reviews of case records.

  • If a mental health problem may underlie behaviour that challenges, consider initial screening using assessment scales such as the Diagnostic Assessment Schedule for the Severely Handicapped‑II, Psychiatric Assessment Schedule for Adults with a Developmental Disability or the Psychopathology Instrument for Mentally Retarded Adults and seek expert opinion.

After further assessment

1.5.12

After further assessment, re‑evaluate the written statement (formulation) and adjust the behaviour support plan if necessary.

1.6 Behaviour support plan

1.6.1

Develop a written behaviour support plan for children, young people and adults with a learning disability and behaviour that challenges that is based on a shared understanding about the function of the behaviour. This should:

  • identify proactive strategies designed to improve the person's quality of life and remove the conditions likely to promote behaviour that challenges, including:

    • changing the environment (for example, reducing noise, increasing predictability)

    • promoting active engagement through structured and personalised daily activities, including adjusting the school curriculum for children and young people

  • identify adaptations to a person's environment and routine, and strategies to help them develop an alternative behaviour to achieve the function of the behaviour that challenges by developing a new skill (for example, improved communication, emotional regulation or social interaction)

  • identify preventive strategies to calm the person when they begin to show early signs of distress, including:

    • individual relaxation techniques

    • distraction and diversion onto activities they find enjoyable and rewarding

  • identify reactive strategies to manage any behaviours that are not preventable (see section 1.9), including how family members, carers or staff should respond if a person's agitation escalates and there is a significant risk of harm to them or others

  • incorporate risk management and take into account the effect of the behaviour support plan on the level of risk

  • be compatible with the abilities and resources of the person's family members, carers or staff, including managing risk, and can be implemented within these resources

  • be supported by data that measure the accurate implementation of the plan

  • be monitored using the continuous collection of objective outcome data

  • be reviewed frequently (fortnightly for the first 2 months and monthly thereafter), particularly if behaviour that challenges or use of restrictive interventions increases, or quality of life decreases

  • identify any training for family members, carers or staff to improve their understanding of behaviour that challenges shown by people with a learning disability

  • identify those responsible for delivering the plan and the designated person responsible for coordinating it.

1.7 Psychological and environmental interventions

Early intervention for children and their parents or carers

1.7.1

Consider parent-training programmes for parents or carers of children with a learning disability who are aged under 12 years with emerging, or at risk of developing, behaviour that challenges.

1.7.2

Parent-training programmes should:

  • be delivered in groups of 10 to 15 parents or carers

  • be accessible (for example, take place outside normal working hours or in community‑based settings with childcare facilities)

  • focus on developing communication and social functioning

  • typically consist of 8 to 12 sessions lasting 90 minutes

  • follow the relevant treatment manual

  • employ materials to ensure consistent implementation of the programme.

1.7.3

Consider preschool classroom-based interventions for children aged 3–5 years with emerging, or at risk of developing, behaviour that challenges.

1.7.4

Preschool classroom-based interventions should have multiple components, including:

  • curriculum design and development

  • social and communication skills training for the children

  • skills training in behavioural strategies for parents or carers

  • training on how to mediate the intervention for preschool teachers.

Interventions for behaviour that challenges

1.7.5

Consider personalised interventions for children, young people and adults that are based on behavioural principles and a functional assessment of behaviour, tailored to the range of settings in which they spend time, and consist of:

  • clear targeted behaviours with agreed outcomes

  • assessment and modification of environmental factors that could trigger or maintain the behaviour (for example, altering task demands for avoidant behaviours)

  • addressing staff and family member or carer responses to behaviour that challenges

  • a clear schedule of reinforcement of desired behaviour and the capacity to offer reinforcement promptly

  • a specified timescale to meet intervention goals (modifying intervention strategies that do not lead to change within a specified time).

1.7.6

Consider individual psychological interventions for adults with an anger management problem. These interventions should be based on cognitive‑behavioural principles and delivered individually or in groups over 15 to 20 hours.

1.7.7

Do not offer sensory interventions (for example, Snoezelen rooms) before carrying out a functional assessment to establish the person's sensory profile. Bear in mind that the sensory profile may change.

1.7.8

Consider developing and maintaining a structured plan of daytime activity (as part of the curriculum if the person is at school) that reflects the person's interests and capacity. Monitor the effects on behaviour that challenges and adjust the plan in discussion with the person and their family members or carers.

1.8 Medication

1.8.1

Consider medication, or optimise existing medication (in line with the NICE guideline on medicines optimisation), for coexisting mental or physical health problems identified as a factor in the development and maintenance of behaviour that challenges shown by children, young people and adults with a learning disability (see also recommendation 1.10.1).

1.8.2

Consider antipsychotic medication to manage behaviour that challenges only if:

  • psychological or other interventions alone do not produce change within an agreed time or

  • treatment for any coexisting mental or physical health problem has not led to a reduction in the behaviour or

  • the risk to the person or others is very severe (for example, because of violence, aggression or self-injury).

    Only offer antipsychotic medication in combination with psychological or other interventions.

1.8.3

When choosing which antipsychotic medication to offer, take into account the person's preference (or that of their family member or carer, if appropriate), side effects, response to previous antipsychotic medication and interactions with other medication.

1.8.4

Antipsychotic medication should initially be prescribed and monitored by a specialist (an adult or child psychiatrist or a neurodevelopmental paediatrician) who should:

  • identify the target behaviour

  • decide on a measure to monitor effectiveness (for example, direct observations, the Aberrant Behavior Checklist or the Adaptive Behavior Scale), including frequency and severity of the behaviour and impact on functioning

  • start with a low dose and use the minimum effective dose needed

  • only prescribe a single drug

  • monitor side effects as recommended in the NICE guidelines on psychosis and schizophrenia in adults and psychosis and schizophrenia in children and young people

  • review the effectiveness and any side effects of the medication after 3–4 weeks

  • stop the medication if there is no indication of a response at 6 weeks, reassess the behaviour that challenges and consider further psychological or environmental interventions

  • only prescribe p.r.n. (as-needed) medication for as short a time as possible and ensure that its use is recorded and reviewed

  • review the medication if there are changes to the person's environment (for example, significant staff changes or moving to a new care setting) or their physical or mental health.

1.8.5

Ensure that the following are documented:

  • a rationale for medication (explained to the person with a learning disability and everyone involved in their care, including their family members and carers)

  • how long the medication should be taken for

  • a strategy for reviewing the prescription and stopping the medication.

1.8.6

If there is a positive response to antipsychotic medication:

  • record the extent of the response, how the behaviour has changed and any side effects or adverse events

  • conduct a full multidisciplinary review after 3 months and then at least every 6 months covering all prescribed medication (including effectiveness, side effects and plans for stopping)

  • only continue to prescribe medication that has proven benefit.

1.8.7

When prescribing is transferred to primary or community care, or between services, the specialist should give clear guidance to the practitioner responsible for continued prescribing about:

  • which behaviours to target

  • monitoring of beneficial and side effects

  • taking the lowest effective dose

  • how long the medication should be taken for

  • plans for stopping the medication.

1.9 Reactive strategies

1.9.1

Only use reactive strategies for children, young people and adults with a learning disability and behaviour that challenges as a last resort and together with the proactive interventions described in section 1.7. When risks to the person with a learning disability or others are significant, or breakdown in their living arrangements is very likely, consider using reactive strategies as an initial intervention and introduce proactive interventions once the situation stabilises.

1.9.2

Ensure that reactive strategies, whether planned or unplanned, are delivered on an ethically sound basis. Use a graded approach that considers the least restrictive alternatives first. Encourage the person and their family members or carers to be involved in planning and reviewing reactive strategies whenever possible.

1.9.3

If a restrictive intervention is used as part of a reactive strategy, follow the NICE guideline on violence and aggression for the safe use of restrictive interventions and carry out a thorough risk assessment. Take into account:

  • any physical health problems and physiological contraindications to the use of restrictive interventions, in particular manual and mechanical restraint

  • any psychological risks associated with the intervention, such as a history of abuse

  • any known biomechanical risks, such as musculoskeletal risks

  • any sensory sensitivities, such as a high or low threshold for touch.

    Document and review the delivery and outcome of the restrictive intervention and discuss these with everyone involved in the care of the person, including their family members and carers, and with the person if possible.

1.9.4

Ensure that any restrictive intervention is accompanied by a restrictive intervention reduction programme, as part of the long-term behaviour support plan, to reduce the use of and need for restrictive interventions.

1.9.5

Ensure that planned restrictive interventions:

  • take place within the appropriate legal framework of the Human Rights Act 1998, the relevant rights in the European Convention on Human Rights, the Mental Health Act 1983 and the Mental Capacity Act 2005, including the supplementary code of practice on deprivation of liberty safeguards

  • are in the best interest of the person to protect them or others from immediate and significant harm

  • are a reasonable, necessary and proportionate response to the risk presented.

1.9.6

Regularly review and reassess the safety, efficacy, frequency of use, duration and continued need for reactive strategies, including restrictive interventions (follow the NICE guideline on violence and aggression for the safe use of restrictive interventions). Document their use as part of an incident record and use this in personal and organisational debrief procedures to inform future behaviour support planning and organisational learning.

1.10 Interventions for coexisting health problems

1.10.1

Offer children, young people and adults with a learning disability and behaviour that challenges interventions for any suspected or coexisting mental or physical health problems in line with the relevant NICE guideline for that condition (see also recommendation 1.8.1). Adjust the nature, content and delivery of the interventions to take into account the impact of the person's learning disability and behaviour that challenges.

1.11 Interventions for sleep problems

1.11.1

Consider behavioural interventions for sleep problems in children, young people and adults with a learning disability and behaviour that challenges that consist of:

  • a functional analysis of the problem sleep behaviour to inform the intervention (for example, not reinforcing non-sleep behaviours)

  • structured bedtime routines.

1.11.2

Do not offer medication to aid sleep unless the sleep problem persists after a behavioural intervention, and then only:

  • after consultation with a psychiatrist (or a specialist paediatrician for a child or young person) with expertise in its use in people with a learning disability

  • together with non‑pharmacological interventions and regular reviews (to evaluate continuing need and ensure that the benefits continue to outweigh the risks).

    If medication is needed to aid sleep, consider melatonin. In May 2015, this was an off-label use of melatonin in people aged 55 years and under. See NICE's information on prescribing medicines.

Terms used in this guideline

Adults

Aged 18 years or older.

Behavioural phenotypes

The expression of distinctive physiological and behavioural characteristics that have a chromosomal or genetic cause.

Carer

A person who provides unpaid support to a partner, family member, friend or neighbour who is ill, struggling or has a disability. This does not include paid carers (care workers), who are included in the definition of staff.

Children

Aged 12 years or younger.

Expressive communication

The ability to express thoughts, feelings and needs verbally (using words and sentences) and non-verbally (for example, using gestures, facial expressions, gaze, signing and other methods that supplement or replace speech or writing).

Functional assessment

An assessment of the function of behaviour that challenges, including functional analyses and other methods of assessing behavioural functions.

Reactive strategies

Any strategy used to make a situation or a person safe when they behave in a way that challenges. This includes procedures for increasing personal space, disengagement from grabs and holds, p.r.n. (as‑needed) medication and more restrictive interventions.

Receptive communication

The ability to understand or comprehend language (either spoken or written) or other means of communication (for example, through signing and other methods that supplement or replace speech or writing).

Reinforcer

An event or situation that is dependent on a behaviour and increases the likelihood of that behaviour happening again.

Restrictive interventions

Interventions that may infringe a person's human rights and freedom of movement, including locking doors, preventing a person from entering certain areas of the living space, seclusion, manual and mechanical restraint, rapid tranquillisation and long-term sedation.

Self‑harm

When a person intentionally harms themselves, which can include cutting and self‑poisoning. It may be an attempt at suicide.

Self‑injury

Frequently repeated, self‑inflicted behaviour, such as people hitting their head or biting themselves, which can lead to tissue damage. This behaviour is usually shown by people with a severe learning disability. It may indicate pain or distress, or it may have another purpose, such as the person using it to communicate.

Staff

Healthcare professionals and social care practitioners, including those working in community teams for adults or children (such as psychologists, psychiatrists, social workers, speech and language therapists, nurses, behavioural analysts, occupational therapists, physiotherapists), paid carers (care workers) in a variety of settings (including residential homes, supported living settings and day services) and educational staff.

Stereotypy

Repeated behaviours, such as rocking or hand flapping, that may appear to have no obvious function but often serve a purpose for the person (for example, to provide sensory stimulation or indicate distress or discomfort).

Treatment manual

Detailed advice and guidance on how to deliver an intervention, including its content, duration and frequency. A treatment manual may also include materials to support the delivery of the intervention for staff and people receiving the intervention.

Young people

Aged 13 to 17 years.