× NICE uses cookies to make the site better.  Learn more
A-Z
Topics
Latest

Challenging behaviour and learning disabilities

About

What is covered

This interactive flowchart covers prevention and interventions for people with learning disabilities whose behaviour challenges. It includes the care and shared care provided or commissioned by health and social care, in whatever care setting the person lives.
The age groups defined in the recommendations are as follows:
  • children: 12 years and under
  • young people: 13 to 17 years
  • adults: 18 years and over.
A learning disability is defined by 3 core criteria: lower intellectual ability (usually an IQ of less than 70), significant impairment of social or adaptive functioning, and onset in childhood. Learning disabilities are different from specific learning difficulties such as dyslexia, which do not affect intellectual ability. Although the term 'intellectual disability' is becoming accepted internationally, 'learning disability' is the most widely used and accepted term in the UK and is therefore used in these recommendations. The amount of everyday support a person with a learning disability needs will depend mostly on the severity of the disability. It is important to treat each person as an individual, with specific strengths and abilities as well as needs, and a broad and detailed assessment may be needed.
Some people with a learning disability display behaviour that challenges. 'Behaviour that challenges' is not a diagnosis and is used in these recommendations to indicate that although such behaviour is a challenge to services, family members or carers, it may serve a purpose for the person with a learning disability (for example, by producing sensory stimulation, attracting attention, avoiding demands and communicating with other people). This behaviour often results from the interaction between personal and environmental factors and includes aggression, self-injury, stereotypic behaviour, withdrawal, and disruptive or destructive behaviour. It can also include violence, arson or sexual abuse, and may bring the person into contact with the criminal justice system.
It is relatively common for people with a learning disability to develop behaviour that challenges, and more common for people with more severe disability. Prevalence rates are around 5–15% in educational, health or social care services for people with a learning disability. Rates are higher in teenagers and people in their early 20s, and in particular settings (for example, 30–40% in hospital settings). People with a learning disability who also have communication difficulties, autism, sensory impairments, sensory processing difficulties and physical or mental health problems (including dementia) may be more likely to develop behaviour that challenges.
The behaviour may appear in only certain environments, and the same behaviour may be considered challenging in some settings or cultures but not in others. It may be used by the person for reasons such as creating sensory stimulation, getting help or avoiding demands. Some care environments increase the likelihood of behaviour that challenges. This includes those with limited opportunities for social interaction and meaningful occupation, lack of choice and sensory input or excessive noise. It also includes care environments that are crowded, unresponsive or unpredictable, those characterised by neglect and abuse, and those where physical health needs and pain go unrecognised or are not managed.
Multiple factors are likely to underlie behaviour that challenges. To identify these, thorough assessments of the person, their environment and any biological predisposition are needed, together with a functional assessment. Interventions depend on the specific triggers for each person and may need to be delivered at multiple levels (including the environmental level). The aim should always be to improve the person's overall quality of life.

Safeguarding children

Remember that child maltreatment:
  • is common
  • can present anywhere, such as emergency departments and primary care or on home visits).
Be aware of or suspect abuse as a contributory factor to or cause of behaviour that challenges shown by children with a learning disability. Abuse may also coexist with behaviour that challenges. See NICE's recommendations on child abuse and neglect for clinical features that may be associated with maltreatment.
This section has been agreed with the Royal College of Paediatrics and Child Health.

Safeguarding adults

Adults with a learning disability are vulnerable to maltreatment and exploitation. This can occur in both community and residential settings. A referral (in line with local safeguarding procedures) may be needed if there are concerns regarding maltreatment or exploitation, or if the person is in contact with the criminal justice system.

Updates

Updates to this interactive flowchart

9 January 2017 Learning disabilities: identifying and managing mental health problems (NICE quality standard 142) added.
7 October 2015 Learning disabilities: challenging behaviour (NICE quality standard 101) added.

Person-centred care

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

Your responsibility

Guidelines

The recommendations in this guideline represent the view of NICE, arrived at after careful consideration of the evidence available. When exercising their judgement, professionals and practitioners are expected to take this guideline fully into account, alongside the individual needs, preferences and values of their patients or the people using their service. It is not mandatory to apply the recommendations, and the guideline does not override the responsibility to make decisions appropriate to the circumstances of the individual, in consultation with them and their families and carers or guardian.
Local commissioners and providers of healthcare have a responsibility to enable the guideline to be applied when individual professionals and people using services wish to use it. They should do so in the context of local and national priorities for funding and developing services, and in light of their duties to have due regard to the need to eliminate unlawful discrimination, to advance equality of opportunity and to reduce health inequalities. Nothing in this guideline should be interpreted in a way that would be inconsistent with complying with those duties.
Commissioners and providers have a responsibility to promote an environmentally sustainable health and care system and should assess and reduce the environmental impact of implementing NICE recommendations wherever possible.

Technology appraisals

The recommendations in this interactive flowchart represent the view of NICE, arrived at after careful consideration of the evidence available. When exercising their judgement, health professionals are expected to take these recommendations fully into account, alongside the individual needs, preferences and values of their patients. The application of the recommendations in this interactive flowchart is at the discretion of health professionals and their individual patients and do not override the responsibility of healthcare professionals to make decisions appropriate to the circumstances of the individual patient, in consultation with the patient and/or their carer or guardian.
Commissioners and/or providers have a responsibility to provide the funding required to enable the recommendations to be applied when individual health professionals and their patients wish to use it, in accordance with the NHS Constitution. They should do so in light of their duties to have due regard to the need to eliminate unlawful discrimination, to advance equality of opportunity and to reduce health inequalities.
Commissioners and providers have a responsibility to promote an environmentally sustainable health and care system and should assess and reduce the environmental impact of implementing NICE recommendations wherever possible.

Medical technologies guidance, diagnostics guidance and interventional procedures guidance

The recommendations in this interactive flowchart represent the view of NICE, arrived at after careful consideration of the evidence available. When exercising their judgement, healthcare professionals are expected to take these recommendations fully into account. However, the interactive flowchart does not override the individual responsibility of healthcare professionals to make decisions appropriate to the circumstances of the individual patient, in consultation with the patient and/or guardian or carer.
Commissioners and/or providers have a responsibility to implement the recommendations, in their local context, in light of their duties to have due regard to the need to eliminate unlawful discrimination, advance equality of opportunity, and foster good relations. Nothing in this interactive flowchart should be interpreted in a way that would be inconsistent with compliance with those duties.
Commissioners and providers have a responsibility to promote an environmentally sustainable health and care system and should assess and reduce the environmental impact of implementing NICE recommendations wherever possible.

Short Text

Everything NICE has said on prevention and interventions for people with learning disabilities whose behaviour challenges in an interactive flowchart

What is covered

This interactive flowchart covers prevention and interventions for people with learning disabilities whose behaviour challenges. It includes the care and shared care provided or commissioned by health and social care, in whatever care setting the person lives.
The age groups defined in the recommendations are as follows:
  • children: 12 years and under
  • young people: 13 to 17 years
  • adults: 18 years and over.
A learning disability is defined by 3 core criteria: lower intellectual ability (usually an IQ of less than 70), significant impairment of social or adaptive functioning, and onset in childhood. Learning disabilities are different from specific learning difficulties such as dyslexia, which do not affect intellectual ability. Although the term 'intellectual disability' is becoming accepted internationally, 'learning disability' is the most widely used and accepted term in the UK and is therefore used in these recommendations. The amount of everyday support a person with a learning disability needs will depend mostly on the severity of the disability. It is important to treat each person as an individual, with specific strengths and abilities as well as needs, and a broad and detailed assessment may be needed.
Some people with a learning disability display behaviour that challenges. 'Behaviour that challenges' is not a diagnosis and is used in these recommendations to indicate that although such behaviour is a challenge to services, family members or carers, it may serve a purpose for the person with a learning disability (for example, by producing sensory stimulation, attracting attention, avoiding demands and communicating with other people). This behaviour often results from the interaction between personal and environmental factors and includes aggression, self-injury, stereotypic behaviour, withdrawal, and disruptive or destructive behaviour. It can also include violence, arson or sexual abuse, and may bring the person into contact with the criminal justice system.
It is relatively common for people with a learning disability to develop behaviour that challenges, and more common for people with more severe disability. Prevalence rates are around 5–15% in educational, health or social care services for people with a learning disability. Rates are higher in teenagers and people in their early 20s, and in particular settings (for example, 30–40% in hospital settings). People with a learning disability who also have communication difficulties, autism, sensory impairments, sensory processing difficulties and physical or mental health problems (including dementia) may be more likely to develop behaviour that challenges.
The behaviour may appear in only certain environments, and the same behaviour may be considered challenging in some settings or cultures but not in others. It may be used by the person for reasons such as creating sensory stimulation, getting help or avoiding demands. Some care environments increase the likelihood of behaviour that challenges. This includes those with limited opportunities for social interaction and meaningful occupation, lack of choice and sensory input or excessive noise. It also includes care environments that are crowded, unresponsive or unpredictable, those characterised by neglect and abuse, and those where physical health needs and pain go unrecognised or are not managed.
Multiple factors are likely to underlie behaviour that challenges. To identify these, thorough assessments of the person, their environment and any biological predisposition are needed, together with a functional assessment. Interventions depend on the specific triggers for each person and may need to be delivered at multiple levels (including the environmental level). The aim should always be to improve the person's overall quality of life.

Safeguarding children

Remember that child maltreatment:
  • is common
  • can present anywhere, such as emergency departments and primary care or on home visits).
Be aware of or suspect abuse as a contributory factor to or cause of behaviour that challenges shown by children with a learning disability. Abuse may also coexist with behaviour that challenges. See NICE's recommendations on child abuse and neglect for clinical features that may be associated with maltreatment.
This section has been agreed with the Royal College of Paediatrics and Child Health.

Safeguarding adults

Adults with a learning disability are vulnerable to maltreatment and exploitation. This can occur in both community and residential settings. A referral (in line with local safeguarding procedures) may be needed if there are concerns regarding maltreatment or exploitation, or if the person is in contact with the criminal justice system.

Updates

Updates to this interactive flowchart

9 January 2017 Learning disabilities: identifying and managing mental health problems (NICE quality standard 142) added.
7 October 2015 Learning disabilities: challenging behaviour (NICE quality standard 101) added.

Sources

NICE guidance and other sources used to create this interactive flowchart.
Learning disabilities: challenging behaviour (2015) NICE quality standard 101

Quality standards

Learning disabilities: challenging behaviour

These quality statements are taken from the learning disabilities: challenging behaviour quality standard. The quality standard defines clinical best practice for challenging behaviour in people with learning difficulties and should be read in full.

Learning disabilities: identifying and managing mental health problems

These quality statements are taken from the learning disabilities: identifying and managing mental health problems quality standard. The quality standard defines clinical best practice for identifying and managing mental health problems in people with learning difficulties and should be read in full.

Quality statements

Comprehensive health assessment

This quality statement is taken from the learning disabilities: challenging behaviour quality standard. The quality standard defines clinical best practice for challenging behaviour in people with learning difficulties and should be read in full.

Quality statement

People with a learning disability have a comprehensive annual health assessment from their GP.

Rationale

Annual health checks in people with a learning disability are likely to lead to identification and management of underlying physical health problems at an early stage. Unrecognised physical illness in people with a learning disability may lead to pain and discomfort, which, in turn, may be an important factor in triggering and maintaining behaviour that challenges. Therefore, early identification of physical health problems in people with a learning disability may reduce behaviour that challenges, leading to a reduction in costs associated with assessing and managing such behaviour.

Quality measures

Structure
Evidence of local arrangements to ensure that people with a learning disability have a comprehensive annual health assessment from their GP.
Data source: Local data collection.
Process
Proportion of people with a learning disability who have a comprehensive annual health assessment from their GP.
Numerator – the number in the denominator who had a comprehensive annual health assessment from their GP in the past 12 months.
Denominator – the number of people with a learning disability in contact with a GP service.
Data source: Local data collection.

What the quality statement means for service providers, healthcare professionals and commissioners

Service providers (primary care providers) ensure that people with a learning disability have a comprehensive annual health assessment from their GP.
Healthcare professionals (GPs) carry out a comprehensive annual health assessment for people with a learning disability.
Commissioners (clinical commissioning groups and NHS England) ensure that they commission services in which GPs provide a comprehensive annual health assessment for people with a learning disability.

What the quality statement means for service users and carers

People with a learning disability have a thorough health check from their GP every year. This should include checking their physical health and any medicines they are taking. The checks should help to plan the person’s healthcare over the next year and make sure that any physical health problems are treated.

Source guidance

Definitions of terms used in this quality statement

Comprehensive health assessment
A comprehensive health assessment should include:
  • a review of any known or emerging behaviour that challenges and how it may be linked to any physical health problems
  • a review of physical health
  • a review of all medicines and other types of treatment (for example psychological therapy)
  • an agreed and shared care plan for managing any physical health problems (including pain)
  • discussion with a family member, carer, healthcare professional or social care practitioner who knows the person.
[Adapted from challenging behaviour and learning disabilities (NICE guideline NG11), recommendation 1.2.1]

Equality and diversity considerations

The communication needs of people with a learning disability, particularly the needs of people who are unable to communicate through speech, should be taken into account in a health assessment. Practitioners may need to provide support for those who have limited speech and for those who have difficulty with English.

Initial assessment of behaviour that challenges

This quality statement is taken from the learning disabilities: challenging behaviour quality standard. The quality standard defines clinical best practice for challenging behaviour in people with learning difficulties and should be read in full.

Quality statement

People with a learning disability and behaviour that challenges have an initial assessment to identify possible triggers, environmental factors and function of the behaviour.

Rationale

Early and timely assessment of behaviour that challenges can identify and seek to address the factors that lead to the behaviour and help to understand why the person is behaving in that way. In turn, this should help to reduce escalation of the behaviour that challenges.

Quality measures

Structure
Evidence of local arrangements to ensure that people with a learning disability and behaviour that challenges have an initial assessment to identify possible triggers, environmental factors and function of the behaviour.
Data source: Local data collection.
Process
a) Proportion of people with a learning disability and behaviour that challenges who have an initial assessment to identify possible triggers, environmental factors and function of the behaviour.
Numerator – the number in the denominator who have an initial assessment to identify possible triggers, environmental factors and function of the behaviour.
Denominator – the number of people with a learning disability presenting with behaviour that challenges.
Data source: Local data collection.

What the quality statement means for service providers, health and social care practitioners, and commissioners

Service providers (health and social care providers) ensure that systems are in place for people with a learning disability and behaviour that challenges to have an initial assessment to identify possible triggers, environmental factors and function of the behaviour.
Health and social care practitioners ensure that people with a learning disability and behaviour that challenges have an initial assessment to identify possible triggers, environmental factors and function of the behaviour.
Commissioners (clinical commissioning groups, NHS England and local authorities) ensure that they commission services that provide initial assessments for people with a learning disability and behaviour that challenges to identify possible triggers, environmental factors and function of the behaviour.

What the quality statement means for service users and carers

People who have a learning disability have an assessment when there are signs of behaviour that challenges. The assessment includes the following:
  • a description of the behaviour
  • how often it occurs and for how long
  • how it affects the person
  • what events or situations make the behaviour happen
  • what purpose the behaviour has for the person.
This helps to identify what may be causing the behaviour and any changes that might stop or reduce it.

Source guidance

Definitions of terms used in this quality statement

Initial assessment
An initial assessment should include:
  • a description of the behaviour and its function (including its severity, frequency, duration, purpose for the person and effect on the person and others); the description should be provided by 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 triggering or maintaining the behaviour; the explanation should be provided by the person (if possible) and a family member, carer or a member of staff (such as a teacher or care worker)
  • any involvement of the service, staff, family members or carers in triggering or maintaining the behaviour.
[Adapted from challenging behaviour and learning disabilities (NICE guideline NG11), recommendation 1.5.4]

Equality and diversity considerations

The communication needs of people with a learning disability, particularly the needs of people who are unable to communicate through speech, should be taken into account in a health assessment. Practitioners may need to provide support for those who have limited speech and for those who have difficulty with English.

Designated coordinator

This quality statement is taken from the learning disabilities: challenging behaviour quality standard. The quality standard defines clinical best practice for challenging behaviour in people with learning difficulties and should be read in full.

Quality statement

People with a learning disability and behaviour that challenges have a designated person responsible for coordinating the behaviour support plan and ensuring that it is reviewed.

Rationale

A designated person responsible for coordinating the behaviour support plan will ensure continuity of care both for the person with a learning disability and their family or carers. It will also reduce the need for families or carers to repeatedly give the same information to different staff. Having a designated person responsible for ensuring that plans are reviewed will help to make sure that plans are adjusted as treatment, behaviours and the person’s preferences change. This will in turn promote the use of proactive strategies to ensure regular and effective support for people with a learning disability and behaviour that challenges.

Quality measures

Structure
Evidence of local arrangements and written protocols to ensure that people with a learning disability and behaviour that challenges have a designated person responsible for coordinating the behaviour support plan and ensuring that it is reviewed.
Data source: Local data collection.
Process
a) Proportion of people with a learning disability and behaviour that challenges with a behaviour support plan.
Numerator – the number of people in the denominator with a behaviour support plan.
Denominator – the number of people with a learning disability and behaviour that challenges.
Data source: Local data collection.
b) Proportion of people with a learning disability and behaviour that challenges who have a designated person responsible for coordinating their behaviour support plan.
Numerator – the number of people in the denominator who have a designated person responsible for coordinating their behaviour support plan.
Denominator – the number of people with a learning disability and behaviour that challenges with an agreed behaviour support plan.
Data source: Local data collection.
c) Proportion of people with a learning disability and behaviour that challenges who have a designated person responsible for ensuring that their behaviour support plan is reviewed.
Numerator – the number of people in the denominator who have a designated person responsible for ensuring that their behaviour support plan is reviewed.
Denominator – the number of people with a learning disability and behaviour that challenges with an agreed behaviour support plan.
Data source: Local data collection.

What the quality statement means for service providers, health and social care practitioners, and commissioners

Service providers (secondary care services and social care providers) ensure that people with a learning disability and behaviour that challenges have a designated person responsible for coordinating the behaviour support plan and ensuring that it is reviewed.
Health and social care practitioners ensure that people with a learning disability and behaviour that challenges have a designated person responsible for coordinating the behaviour support plan and ensuring that it is reviewed.
Commissioners (clinical commissioning groups, NHS England and local authorities) ensure that they commission services that provide people with a learning disability and behaviour that challenges with a designated person responsible for coordinating the behaviour support plan and ensuring that it is reviewed.

What the quality statement means for service users and carers

People with a learning disability and behaviour that challenges have one person who is responsible for coordinating the plan that sets out how they will be supported. The person with a learning disability, and their family or carers, knows who this person is and how they can contact them. This gives them a familiar single point of contact and reduces the number of times they have to repeat information to staff. This person will also be responsible for ensuring that the plan is reviewed. The aim of the review is to make sure that the plan is appropriate for the person with a learning disability and supports their daily living.

Source guidance

Definitions of terms used in this quality statement

Behaviour support plan
A behaviour support plan should be developed and agreed with the person with a learning disability and behaviour that challenges and the people who support them, including their family or carers. The behaviour support plan should be based on a shared understanding about the function of the behaviour and should:
  • identify proactive strategies designed to improve the person's quality of life and remove the conditions likely to promote behaviour that challenges
  • identify adaptations to a person’s environment and routine, and strategies to help them develop another behaviour that fulfils the same function 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
  • identify reactive strategies to manage any behaviours that are not preventable
  • 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
  • identify training for family members, carers or staff to improve their understanding of behaviour that challenges shown by people with a learning disability.
[Adapted from challenging behaviour and learning disabilities (NICE guideline NG11), recommendation 1.6.1]
Review of behaviour support plan
The review should involve the person with a learning disability and behaviour that challenges and the people who support them, including their family or carers. The review should help to identify how the plan is helping to make improvements to the person’s life and to reduce or stop behaviour that challenges. The behaviour support plan should be reviewed every other week for the first 2 months and then once a month.

Equality and diversity considerations

The communication needs of people with a learning disability, particularly the needs of people who are unable to communicate through speech, should be taken into account in a health assessment. Practitioners may need to provide support for those who have limited speech and for those who have difficulty with English.

Personalised daily activities

This quality statement is taken from the learning disabilities: challenging behaviour quality standard. The quality standard defines clinical best practice for challenging behaviour in people with learning difficulties and should be read in full.

Quality statement

People with a learning disability and behaviour that challenges take part in personalised daily activities.

Rationale

People with a learning disability and behaviour that challenges often have limited opportunity to engage in meaningful occupation or activity, or may take part in activities that are not meaningful to them. Very high rates of behaviour that challenges have been reported in institutions that typically offer relatively limited activities. Ensuring that people with a learning disability have planned, personalised daily activities will help to reduce rates of behaviour that challenges.

Quality measures

Structure
Evidence of local arrangements to ensure that people with a learning disability and behaviour that challenges take part in personalised daily activities.
Data source: Local data collection.
Process
a) Proportion of people with a learning disability and behaviour that challenges with a personalised daily activity schedule.
Numerator – the number in the denominator with a personalised daily activity schedule.
Denominator – the number of people with a learning disability and behaviour that challenges.
Data source: Local data collection.
b) Proportion of people taking part in personalised daily activities.
Numerator – the number in the denominator who take part in personalised daily activities.
Denominator – the number of people with a learning disability and behaviour that challenges with a personalised daily activity schedule.
Data source: Local data collection.
Outcome
Service user experience of personalised daily activities.
Data source: Local data collection.

What the quality statement means for service providers, health and social care practitioners, and commissioners

Service providers (such as health and social care providers, providers of residential care and providers in educational settings) ensure that systems are in place for people with a learning disability and behaviour that challenges to take part in personalised daily activities.
Health and social care practitioners (including staff in residential settings and educational settings) ensure that people with a learning disability and behaviour that challenges take part in personalised daily activities.
Commissioners (NHS England, clinical commissioning groups and local authorities) ensure that they commission services that plan personalised daily activities for people with a learning disability and behaviour that challenges.

What the quality statement means for service users and carers

People with a learning disability and behaviour that challenges take part in activities planned for each day. The activities should be interesting for the person and should be recorded in a daily activity schedule. This should form part of the behaviour support plan that sets out how they will be supported. The activity schedule should be developed with the person with a learning disability and behaviour that challenges and the people who support them, including their family or carers.

Source guidance

Definitions of terms used in this quality statement

Daily activity schedule
The daily activity schedule should be developed and agreed with the person with a learning disability and behaviour that challenges and the people who support them, including their family or carers. The planned activities should be of interest to the person and be meaningful to them. The activities should be recorded in the daily activity schedule and form part of the behaviour support plan.
Behaviour support plan
A behaviour support plan should be developed and agreed with the person with a learning disability and behaviour that challenges and the people who support them, including their family or carers. The behaviour support plan is based on a shared understanding about the function of the behaviour and should:
  • identify proactive strategies designed to improve the person's quality of life and remove the conditions likely to promote behaviour that challenges
  • identify adaptations to a person’s environment and routine, and strategies to help them develop another behaviour that fulfils the same function 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
  • identify reactive strategies to manage any behaviours that are not preventable
  • 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 be able to be implemented within these resources
  • identify training for family members, carers or staff to improve their understanding of behaviour that challenges shown by people with a learning disability.
[Adapted from challenging behaviour and learning disabilities (NICE guideline NG11), recommendation 1.6.1]

Equality and diversity considerations

The communication needs of people with a learning disability, particularly the needs of people who are unable to communicate through speech, should be taken into account in a health assessment. Practitioners may need to provide support for those who have limited speech and for those who have difficulty with English.

Review of restrictive interventions

This quality statement is taken from the learning disabilities: challenging behaviour quality standard. The quality standard defines clinical best practice for challenging behaviour in people with learning difficulties and should be read in full.

Quality statement

People with a learning disability and behaviour that challenges have a documented review every time a restrictive intervention is used.

Rationale

Restrictive interventions should be used as a last resort and decisions to use them should be based on the principle of using the least restrictive intervention necessary. Documented risk assessment and review of restrictive interventions helps to ensure learning. This will reduce the use of future restrictive practices, identify and mitigate any risks associated with their use and ensure safety, dignity and respect for people with a learning disability and behaviour that challenges. A documented review will also help to ensure that people with a learning disability and behaviour that challenges and their families or carers understand why and when restrictive interventions could be used.

Quality measures

Structure
Evidence of local arrangements and written protocols to ensure that people with a learning disability and behaviour that challenges have a documented review every time a restrictive intervention is used.
Data source: Local data collection.
Process
a) Proportion of people with a learning disability and behaviour that challenges who receive a restrictive intervention.
Numerator – the number in the denominator who receive a restrictive intervention.
Denominator – the number of people with a learning disability and behaviour that challenges.
Data source: Local data collection.
b) Proportion of people with a learning disability and behaviour that challenges who have a documented review every time a restrictive intervention is used.
Numerator – the number in the denominator who have a documented review every time a restrictive intervention is used.
Denominator – the number of people with a learning disability and behaviour that challenges who receive a restrictive intervention.
Data source: Local data collection.
Outcome
Rates of restrictive interventions.
Data source: Local data collection.

What the quality statement means for service providers, health and social care practitioners, and commissioners

Service providers (such as secondary care services, social care providers and providers of residential care) ensure that systems are in place for people with a learning disability and behaviour that challenges to have a documented review every time a restrictive intervention is used.
Health and social care practitioners (including staff in residential settings) ensure that people with a learning disability and behaviour that challenges have a documented review every time a restrictive intervention is used.
Commissioners (such as clinical commissioning groups, NHS England and local authorities) ensure that they commission services that carry out a documented review with people with a learning disability and behaviour that challenges every time a restrictive intervention is used.

What the quality statement means for service users and carers

People with a learning disability and behaviour that challenges who are stopped from moving around (for example, by being held or given an injection of medication) should have a review of how this was carried out and whether it was needed or could have been avoided. A review should help the person understand when and why this approach is used. A review should also make sure that the approach used restricts the person as little as possible.

Source guidance

Definitions of terms used in this quality statement

Restrictive intervention
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.
Documented review of restrictive intervention
Use of a restrictive intervention should be accompanied by a documented review that includes the following:
  • review of the delivery and outcome of the restrictive intervention, whether it was needed and how it could be avoided (and if so, what action will be taken)
  • assessment of the safety, efficacy, frequency of use, duration and continued need for reactive strategies
  • involvement of everyone who cares for the person with a learning disability, including their family members and carers, and the person themselves, if possible.
[Adapted from challenging behaviour and learning disabilities (NICE guideline NG11), recommendations 1.9.3 and 1.9.6]
Equality and diversity considerations
The communication needs of people with a learning disability, particularly the needs of people who are unable to communicate through speech, should be taken into account in a health assessment. Practitioners may need to provide support for those who have limited speech and for those who have difficulty with English.

Use of medication

This quality statement is taken from the learning disabilities: challenging behaviour quality standard. The quality standard defines clinical best practice for challenging behaviour in people with learning difficulties and should be read in full.

Quality statement

People with a learning disability and behaviour that challenges only receive antipsychotic medication as part of treatment that includes psychosocial interventions.

Rationale

Antipsychotics are the most frequently used drugs for people with a learning disability and behaviour that challenges, often in the absence of a diagnosis of a mental health problem. They should be used only if no or limited benefit has been derived from a psychosocial intervention, and treatment for any coexisting mental or physical health problem has not led to a reduction in behaviour that challenges. Psychosocial interventions are the most commonly reported forms of intervention used for people with a learning disability and behaviour that challenges and should be the first-line intervention to address any identified triggers for the behaviour.

Quality measures

Structure
a) Evidence of local arrangements to ensure that people with a learning disability and behaviour that challenges only receive antipsychotic medication as part of treatment that includes psychosocial interventions.
Data source: Local data collection.
Process
a) Proportion of people with a learning disability and behaviour that challenges prescribed antipsychotic medication as part of treatment that includes psychosocial interventions.
Numerator – the number in the denominator who are receiving psychosocial interventions.
Denominator – the number of people with a learning disability and behaviour that challenges prescribed antipsychotic medication within the past 12 months.
Data source: Local data collection.
b) Proportion of people with a learning disability and behaviour that challenges prescribed antipsychotic medication with a recorded rationale for the prescribing decision.
Numerator – the number in the denominator with a recorded rationale for the prescribing decision.
Denominator – the number of people with a learning disability and behaviour that challenges prescribed antipsychotic medication within the past 12 months.
Data source: Local data collection.
Outcome
Prescribing rates of antipsychotics in people with a learning disability and behaviour that challenges.
Data source: Local data collection.

What the quality statement means for service providers, healthcare professionals and commissioners

Service providers (secondary care services) ensure that systems are in place for people with a learning disability and behaviour that challenges to only be prescribed antipsychotic medication as part of treatment that includes psychosocial interventions.
Healthcare professionals only prescribe antipsychotic medication for people with a learning disability and behaviour that challenges as part of treatment that includes psychosocial interventions.
Commissioners (clinical commissioning groups and NHS England) ensure that they commission services that only prescribe antipsychotic medication for people with a learning disability and behaviour that challenges as part of treatment that includes psychosocial interventions.

What the quality statement means for service users and carers

People with a learning disability and behaviour that challenges only have antipsychotic medication if they are also having psychological therapy or other therapies as part of their care. This should help to ensure that medication is only used if other therapies, or treatments for any physical health problems, have not changed or reduced the behaviour that challenges, or if there is a serious risk of the person harming themselves or others (for example, because of violence, aggression or self-harm).

Source guidance

Definitions of terms used in this quality statement

Psychosocial interventions
Psychosocial interventions include a broad range of therapeutic approaches designed to support the person. They are generally non-pharmacological and aim to identify underlying factors for behaviour, reduce the person’s distress and increase their skills. Approaches include communication interventions, applied behaviour analysis, positive behaviour support and cognitive behavioural therapy.
[Adapted from challenging behaviour and learning disabilities (NICE guideline NG11), section 11 of the full guideline]
Equality and diversity considerations
The communication needs of people with a learning disability, particularly the needs of people who are unable to communicate through speech, should be taken into account in a health assessment. Practitioners may need to provide support for those who have limited speech and for those who have difficulty with English.

Review of medication

This quality statement is taken from the learning disabilities: challenging behaviour quality standard. The quality standard defines clinical best practice for challenging behaviour in people with learning difficulties and should be read in full.

Quality statement

People with a learning disability and behaviour that challenges have a multidisciplinary review of their antipsychotic medication 12 weeks after starting treatment and then at least every 6 months.

Rationale

Antipsychotics are the most frequently used drugs for people with a learning disability and behaviour that challenges, often in the absence of a diagnosis of a mental health problem. The use of antipsychotics should be limited and regular review should ensure that there is an appropriate rationale for prescribing. A full multidisciplinary review will also help to reduce prolonged use of antipsychotics and thereby potential side effects.

Quality measures

Structure
Evidence of local arrangements and written protocols to ensure that people with a learning disability and behaviour that challenges have a multidisciplinary review of their antipsychotic medication 12 weeks after starting treatment and then at least every 6 months.
Data source: Local data collection.
Process
a) Proportion of people with a learning disability and behaviour that challenges who have a multidisciplinary review of their antipsychotic medication 12 weeks after starting treatment.
Numerator – the number in the denominator who have a multidisciplinary review of their antipsychotic medication 12 weeks after starting treatment.
Denominator – the number of people with a learning disability and behaviour that challenges prescribed antipsychotic medication within the past 12 months.
Data source: Local data collection.
b) Proportion of people with a learning disability and behaviour that challenges who have a multidisciplinary review of their antipsychotic medication at least every 6 months after the first 12 weeks of treatment.
Numerator – the number in the denominator who have a multidisciplinary review of their antipsychotic medication at least every 6 months after the first 12 weeks of treatment.
Denominator – the number of people with a learning disability and behaviour that challenges prescribed antipsychotic medication within the last 12 months.
Data source: Local data collection.
Outcome
Prescribing rates of antipsychotics in people with a learning disability and behaviour that challenges.
Data source: Local data collection.

What the quality statement means for service providers, health and social care practitioners, and commissioners

Service providers (secondary care services) ensure that systems are in place for people with a learning disability and behaviour that challenges to have a multidisciplinary review of their antipsychotic medication 12 weeks after starting treatment and then at least every 6 months.
Health and social care practitioners ensure that people with a learning disability and behaviour that challenges have a multidisciplinary review of their antipsychotic medication 12 weeks after starting treatment and then at least every 6 months.
Commissioners (clinical commissioning groups and NHS England) ensure that they commission services that provide people with a learning disability and behaviour that challenges with a multidisciplinary review of their antipsychotic medication 12 weeks after starting treatment and then at least every 6 months.

What the quality statement means for service users and carers

People with a learning disability and behaviour that challenges who take antipsychotic medication have their medication checked 12 weeks after they start taking it and then at least every 6 months. Their medication should be checked by a team that includes doctors, nurses and care staff. The check should include how well the medication is working (including whether it is causing any side effects) and whether the person should keep taking it. This should be explained to the person and their family or carers.

Source guidance

Definitions of terms used in this quality statement

Multidisciplinary review
A review of prescribed antipsychotic medication by a team that includes doctors, nurses and care staff that includes the following:
  • a record of the extent of the response, how the behaviour has changed and any side effects or adverse events
  • identification of any physical abnormalities
  • the rationale for continuing the medication, if this is being done, and an explanation of this for the person with a learning disability and behaviour that challenges and everyone involved in their care, including their family members and carers.
[Adapted from challenging behaviour and learning disabilities (NICE guideline NG11), section 1.8]

Equality and diversity considerations

The communication needs of people with a learning disability, particularly the needs of people who are unable to communicate through speech, should be taken into account in a health assessment. Practitioners may need to provide support for those who have limited speech and for those who have difficulty with English.

Family and carer support

This quality statement is taken from the learning disabilities: challenging behaviour quality standard. The quality standard defines clinical best practice for challenging behaviour in people with learning difficulties and should be read in full.

Quality statement

Parents or carers of children aged under 12 years with a learning disability and behaviour that challenges are offered a parent-training programme.

Rationale

Early interventions for parents or carers support them to better understand and manage behaviour that challenges. This can help prevent the behaviour from developing into a long-term problem that is distressing for the person with a learning disability and leads to a greater burden of care for families and the wider service system. Parent-training programmes include training to promote the communication and social skills of children with a learning disability. They are designed to help parents and carers to understand, respond to and support children more effectively, with the aim of reducing and managing behaviour that challenges.

Quality measures

Structure
Evidence of local arrangements to ensure that parents or carers of children aged under 12 years with a learning disability and behaviour that challenges are offered a parent training-programme for behaviour that challenges.
Data source: Local data collection.
Process
a) Proportion of parents or carers of children aged under 12 years with a learning disability and behaviour that challenges who are offered a parent-training programme for behaviour that challenges.
Numerator – the number in the denominator whose parents or carers are offered a parent-training programme for behaviour that challenges.
Denominator – the number of children aged under 12 years with a learning disability and behaviour that challenges.
Data source: Local data collection.
What the quality statement means for service providers, health and social care practitioners, and commissioners
Service providers (secondary care and social care providers) ensure that parents or carers of children aged under 12 years with a learning disability and behaviour that challenges are offered a parent-training programme for behaviour that challenges.
Health and social care practitioners ensure that parents or carers of children aged under 12 years with a learning disability and behaviour that challenges are offered a parent-training programme for behaviour that challenges.
Commissioners (clinical commissioning groups, NHS England and local authorities) ensure that they commission services that offer parent-training programmes for behaviour that challenges to parents or carers of children aged under 12 years who have a learning disability and behaviour that challenges.
What the quality statement means for service users and carers
Parents or carers of children aged under 12 years with a learning disability and behaviour that challenges are offered a training programme to help them better understand and support the child. They learn how to help children improve their communication and social skills, which can help to reduce behaviour that challenges.

Source guidance

Definitions of terms used in this quality statement

Parent-training programme
Parent-training programmes:
  • are delivered in groups of 10 to 15 parents or carers
  • focus on developing communication and social functioning in the child with a learning disability
  • typically consist of 8 to 12 sessions lasting 90 minutes
  • follow a treatment manual
  • are accessible (for example, take place outside normal working hours or in community-based settings with childcare facilities)
  • use practical materials to ensure consistent implementation of the programme.
[Adapted from challenging behaviour and learning disabilities (NICE guideline NG11), recommendation 1.7.2]

Annual health check

This quality statement is taken from the learning disabilities: identifying and managing mental health problems quality standard. The quality standard defines clinical best practice for identifying and managing mental health problems in people with learning difficulties and should be read in full.

Quality statement

Young people and adults with learning disabilities have an annual health check that includes a review of mental health problems.

Rationale

Annual health checks for young people and adults with learning disabilities can be used to identify and monitor mental health problems. Young people and adults with learning disabilities and mental health needs may have difficulty explaining their health problems, so checking for issues and regularly monitoring needs is important to ensure that these are not missed.

Quality measures

Structure
Evidence of local arrangements to ensure that young people and adults with learning disabilities have an annual health check that includes a review of mental health problems.
Data source: Local data collection.
Process
a) Proportion of young people with learning disabilities who have an annual health check that includes a review of mental health problems.
Numerator – the number in the denominator who have had an annual health check that includes a review of mental health problems.
Denominator – the number of young people with learning disabilities.
Data source: Local data collection.
b) Proportion of adults with learning disabilities who have an annual health check that includes a review of mental health problems.
Numerator – the number in the denominator who have had an annual health check that includes a review of mental health problems.
Denominator – the number of adults with learning disabilities.
Data source: Local data collection.
Outcome
a) Identification of mental health needs in young people and adults with learning disabilities.
Data source: Local data collection.
b) Identification of physical health needs in young people and adults with learning disabilities.
Data source: Local data collection.

What the quality statement means for different audiences

Service providers (enhanced GP services) ensure that young people and adults with learning disabilities have an annual health check that includes a review of mental health problems, and that a family member, carer or care worker is involved (as appropriate).
Healthcare professionals (such as GPs) conduct annual health checks that include reviews of mental health problems for young people and adults with learning disabilities, and involve a family member, carer or care worker (as appropriate).
Commissioners (clinical commissioning groups) ensure that general practices are signed up to provide annual health checks that prioritise a review of physical and mental health, for young people and adults with learning disabilities.
Young people and adults with learning disabilities have an annual health check that includes a review of their mental and physical health. This includes:
  • identifying potential new problems
  • looking at all the treatments they are having, to see if they are having any difficulties (for example with going to therapy sessions)
  • reviewing the medications they are taking to see if they have had side effects, any difficulties taking medication or any other problems
  • agreeing a care plan with the healthcare professional for managing any physical health and mental health problems.
If they want, the person may take a family member or carer with them.

Source guidance

Definitions of terms used in this quality statement

Young people
Aged 13–17 years.
Annual health check
This should involve the person with learning disabilities and a family member, carer, care worker, GP or social care practitioner (as appropriate) who knows them. It should include:
  • a review of any known or suspected mental health problems and how they may be linked to any physical health problems
  • a physical health review, including assessment for the conditions and impairments that are common in people with learning disabilities
  • a review of all current interventions, including medication and related side effects, adverse events, interactions and adherence for both mental health and physical health conditions
  • an agreed and shared care plan for managing any physical health and mental health problems (including pain).
[Adapted from mental health problems in people with learning disabilities (NICE guideline NG54), recommendation 1.6.3; and challenging behaviour and learning disabilities (NICE guideline NG11), recommendation 1.2.1]

Equality and diversity considerations

Healthcare professionals should take into account the communication needs of people with learning disabilities. They should make reasonable adjustments and provide support if needed for people who have limited or no speech, who have difficulty with English, or who have other communication needs.
Communication with the person and their family members, carers or care workers (as appropriate) needs to be in a clear format and in a language suited to the person’s needs and preferences.

Assessment by a professional with relevant expertise

This quality statement is taken from the learning disabilities: identifying and managing mental health problems quality standard. The quality standard defines clinical best practice for identifying and managing mental health problems in people with learning difficulties and should be read in full.

Quality statement

People with learning disabilities who need a mental health assessment are referred to a professional with expertise in mental health problems in people with learning disabilities.

Rationale

The mental health assessment should be conducted by a professional with expertise in mental health problems in people with learning disabilities. This ensures that the assessment and subsequent care is effective and tailored to the person’s individual needs and circumstances, and makes reasonable adjustments to take account of their learning disabilities.

Quality measures

Structure
Evidence of local arrangements to ensure that people with learning disabilities who need a mental health assessment are referred to a professional with expertise in mental health problems in people with learning disabilities.
Data source: Local data collection.
Process
a) Proportion of people with learning disabilities who need a mental health assessment and are referred to a professional with expertise in mental health problems in people with learning disabilities.
Numerator – the number in the denominator who are referred to a professional with expertise in mental health problems in people with learning disabilities.
Denominator – the number of people with learning disabilities who need a mental health assessment.
Data source: Local data collection.
b) Proportion of people with learning disabilities who are referred for a mental health assessment and are assessed by a professional with expertise in mental health problems in people with learning disabilities.
Numerator – the number in the denominator who are assessed by a professional with expertise in mental health problems in people with learning disabilities.
Denominator – the number of people with learning disabilities who are referred for a mental health assessment.
Data source: Local data collection.
Outcome
Identification of mental health problems in people with learning disabilities.
Data source: Local data collection.

What the quality statement means for different audiences

Service providers (secondary care providers, mental health services and specialist learning disabilities services) ensure that people with learning disabilities who need a mental health assessment are referred to a professional with expertise in mental health problems in people with learning disabilities.
Health and social care practitioners with expertise in mental health problems in people with learning disabilities conduct mental health assessments for people with learning disabilities. At the assessment, the professional completes a formal mental health assessment questionnaire.
Commissioners (clinical commissioning groups, NHS England and local authorities) commission services that ensure that people with learning disabilities who need a mental health assessment are referred to a professional with expertise in mental health problems in people with learning disabilities.
People with learning disabilities who need a mental health assessment are referred to a professional who has the skills to do this for people with learning disabilities and mental health problems. If possible, this should be carried out in a place familiar to the person, with any family members, carers, care workers or others that they want to involve. If needed, staff should help the person with learning disabilities to prepare for the assessment.

Source guidance

Definition of terms used in this quality statement

Mental health assessment
The assessment should include a review of the person’s previous history (both physical and mental health) and personal circumstances. This is essential when assessing the person’s mental health problem and developing a mental health care plan. A formal assessment questionnaire should be completed as part of the assessment.
[Adapted from mental health problems in people with learning disabilities (NICE guideline NG54), recommendations 1.8.1 and 1.8.6]

Equality and diversity considerations

Healthcare professionals should take into account the communication needs of people with learning disabilities when conducting a mental health assessment. They should make reasonable adjustments for people accessing mental health services, and provide support if needed for people who have limited or no speech or who have difficulty with English.
Communication with the person and their family members, carers or care workers (as appropriate) needs to be in a clear format and in a language suited to the person’s needs and preferences.

Key worker

This quality statement is taken from the learning disabilities: identifying and managing mental health problems quality standard. The quality standard defines clinical best practice for identifying and managing mental health problems in people with learning difficulties and should be read in full.

Quality statement

People with learning disabilities and a serious mental illness have a key worker to coordinate their care.

Rationale

Appointing a key worker would improve care coordination and help services to communicate clearly with people with learning disabilities and their family members and carers.

Quality measures

Structure
Evidence of local arrangements and written protocols to ensure that people with learning disabilities and a serious mental illness have a key worker to coordinate their care.
Data source: Local data collection.
Process
Proportion of people with learning disabilities and a serious mental illness who have a key worker to coordinate their care.
Numerator – the number in the denominator who have a key worker to coordinate their care.
Denominator – the number of people with learning disabilities and a serious mental illness.
Data source: Local data collection.
Outcomes
Patient and carer satisfaction with their key worker’s coordination of care.
Data source: Local data collection.

What the quality statement means for different audiences

Service providers (primary, secondary and social care services that provide care for people with learning disabilities and mental health problems) ensure that people with learning disabilities and a serious mental illness have a key worker to coordinate all aspects of care.
Key workers coordinate all aspects of care and communication for the person, their family members and carers, and the services that are involved. They should maintain regular contact with the person and their family members and carers and specify this in the care plan.
Commissioners (clinical commissioning groups, NHS England and local authorities) commission services that provide a key worker for each person with learning disabilities and a serious mental illness. The key worker should coordinate all aspects of care and communication.
People with learning disabilities and a serious mental illness have a key worker who acts as the main contact for them and their family members and carers. The key worker makes sure that all staff involved are working together, and that the care plan is being followed and is helping. They ensure that any assessments, care and treatments are explained clearly to the person with learning disabilities.

Source guidance

Definitions of terms used in this quality statement

Serious mental illness
A diagnosis of:
  • severe depression or anxiety that is impacting heavily on the person’s functioning
  • psychosis
  • schizophrenia
  • bipolar disorder
  • an eating disorder
  • personality disorder
  • schizoaffective disorder.
[Mental health problems in people with learning disabilities (NICE guideline NG54) and expert consensus]
Key worker
A key worker (also known as a care or case coordinator, or a Care Programme Approach care coordinator) is the central point of contact for the person with learning disabilities, their family members and carers, and the services involved in their care. They are responsible for helping the person and their family members and carers to access services and for coordinating the involvement of different services. They ensure clear communication between all people and services and have an overall view of the person’s needs and the requirements of their care plan. They ensure that services communicate regularly with the person and their family members and carers, in a suitable format.

Equality and diversity considerations

Healthcare professionals should take into account the communication needs of people with learning disabilities. They should make reasonable adjustments and provide support if needed for people who have limited or no speech, who have difficulty with English, or who have other communication needs.
Communication with the person and their family members, carers or care workers (as appropriate) needs to be in a clear format and in a language suited to the person’s needs and preferences. 

Tailoring psychological interventions

This quality statement is taken from the learning disabilities: identifying and managing mental health problems quality standard. The quality standard defines clinical best practice for identifying and managing mental health problems in people with learning difficulties and should be read in full.

Quality statement

People with learning disabilities and mental health problems who are receiving psychological interventions have them tailored to their preferences, level of understanding, and strengths and needs.

Rationale

Children, young people and adults with learning disabilities are at higher risk of mental health problems than the general population. Standard evidence-based psychological interventions are not designed to take account of the cognitive, communication or social impairments associated with learning disabilities. People with learning disabilities can have a broad range of difficulties, so the care setting and interventions need to be adapted and tailored to each person’s preferences, level of understanding, and strengths and needs.

Quality measures

Structure
Evidence of local arrangements to ensure that people with learning disabilities and mental health problems who are receiving psychological interventions have them tailored to their preferences, level of understanding, and strengths and needs.
Process
Proportion of people with learning disabilities and mental health problems who are receiving psychological interventions that are tailored to their preferences, level of understanding, and strengths and needs.
Numerator – the number in the denominator who receive psychological interventions that are tailored to their preferences, level of understanding, and strengths and needs.
Denominator – the number of people with learning disabilities and mental health problems who are receiving psychological interventions.
Data source: Local data collection.
Outcome
Quality of life of people with learning disabilities and mental health problems and their family members and carers.
Data source: Local data collection.

What the quality statement means for different audiences

Service providers (secondary care providers, mental health services and specialist learning disabilities services) ensure that people with learning disabilities and mental health problems who are receiving psychological interventions have them tailored to their preferences, level of understanding, and strengths and needs.
Health and social care practitioners tailor psychological interventions for people with learning disabilities and mental health problems, to match their preferences, level of understanding, and strengths and needs.
Commissioners (clinical commissioning groups, NHS England and local authorities) commission services that ensure that psychological interventions for people with learning disabilities and mental health problems are tailored to match their preferences, level of understanding, and strengths and needs.
People with learning disabilities and a mental health problem have access to psychological (‘talking’) therapies that are designed around their needs.

Source guidance

Mental health problems in people with learning disabilities: prevention, assessment and management (2016) NICE guideline NG54, recommendations 1.9.1–1.9.4, 1.9.8 and 1.9.9

Annually documenting the reasons for continuing antipsychotic drugs

This quality statement is taken from the learning disabilities: identifying and managing mental health problems quality standard. The quality standard defines clinical best practice for identifying and managing mental health problems in people with learning difficulties and should be read in full.

Quality statement

People with learning disabilities who are taking antipsychotic drugs that are not reduced or stopped have annual documentation on reasons for continuing this prescription.

Rationale

People with learning disabilities who are taking medication for a mental health problem would benefit from closer monitoring and a clear rationale for their treatment plan, such as an annual record of the reasons for continuing prescriptions. People with learning disabilities are often given long courses of medication. This is not always helpful, and regular review and agreed shared care protocols are necessary to avoid this.
Effective use of medication to prevent and manage mental health problems is likely to improve the quality of life of people with learning disabilities and their family members and carers, and reduce costs and inappropriate prescribing.

Quality measures

Structure
Evidence of local arrangements to ensure that people with learning disabilities who are taking antipsychotic drugs that are not reduced or stopped have annual documentation on reasons for continuing this prescription.
Data source: Local data collection.
Process
Proportion of people with learning disabilities who are taking antipsychotic drugs that are not reduced or stopped and who have annual documentation on reasons for continuing this prescription.
Numerator – the number in the denominator who have annual documentation on reasons for continuing this prescription.
Denominator – the number of people with learning disabilities who are taking antipsychotic drugs that are not reduced or stopped.
Data source: Local data collection.
Outcome
a) Antipsychotic medication prescribing rates for people with learning disabilities.
Data source: Local data collection.
b) Quality of life of people with learning disabilities and their family members and carers.
Data source: Local data collection.

What the quality statement means for different audiences

Service providers (secondary care providers) ensure that people with learning disabilities who are taking antipsychotic drugs that are not reduced or stopped have annual documentation on reasons for continuing this prescription.
Healthcare professionals (clinicians) annually document the reasons for continuing prescriptions for people with learning disabilities who are taking antipsychotic drugs that are not reduced or stopped.
Commissioners (NHS England) commission services that ensure that people with learning disabilities who are taking antipsychotic drugs that are not reduced or stopped have annual documentation on reasons for continuing this prescription.
People with learning disabilities who are taking antipsychotic drugs (medication to help with psychosis) that are not reduced or stopped have a review of their prescription and the reasons for continuing it recorded every year.

Source guidance

Equality and diversity considerations

Healthcare professionals should take into account the communication needs of people with learning disabilities. They should make reasonable adjustments and provide support if needed for people who have limited or no speech, who have difficulty with English, or who have other communication needs.
Communication with the person and their family members, carers or care workers (as appropriate) needs to be in a clear format and in a language suited to the person’s needs and preferences.

Effective interventions library

Effective interventions library

Successful effective interventions library details

Implementation

Information for the public

NICE has written information for the public on each of the following topics.

Pathway information

Person-centred care

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

Your responsibility

Guidelines

The recommendations in this guideline represent the view of NICE, arrived at after careful consideration of the evidence available. When exercising their judgement, professionals and practitioners are expected to take this guideline fully into account, alongside the individual needs, preferences and values of their patients or the people using their service. It is not mandatory to apply the recommendations, and the guideline does not override the responsibility to make decisions appropriate to the circumstances of the individual, in consultation with them and their families and carers or guardian.
Local commissioners and providers of healthcare have a responsibility to enable the guideline to be applied when individual professionals and people using services wish to use it. They should do so in the context of local and national priorities for funding and developing services, and in light of their duties to have due regard to the need to eliminate unlawful discrimination, to advance equality of opportunity and to reduce health inequalities. Nothing in this guideline should be interpreted in a way that would be inconsistent with complying with those duties.
Commissioners and providers have a responsibility to promote an environmentally sustainable health and care system and should assess and reduce the environmental impact of implementing NICE recommendations wherever possible.

Technology appraisals

The recommendations in this interactive flowchart represent the view of NICE, arrived at after careful consideration of the evidence available. When exercising their judgement, health professionals are expected to take these recommendations fully into account, alongside the individual needs, preferences and values of their patients. The application of the recommendations in this interactive flowchart is at the discretion of health professionals and their individual patients and do not override the responsibility of healthcare professionals to make decisions appropriate to the circumstances of the individual patient, in consultation with the patient and/or their carer or guardian.
Commissioners and/or providers have a responsibility to provide the funding required to enable the recommendations to be applied when individual health professionals and their patients wish to use it, in accordance with the NHS Constitution. They should do so in light of their duties to have due regard to the need to eliminate unlawful discrimination, to advance equality of opportunity and to reduce health inequalities.
Commissioners and providers have a responsibility to promote an environmentally sustainable health and care system and should assess and reduce the environmental impact of implementing NICE recommendations wherever possible.

Medical technologies guidance, diagnostics guidance and interventional procedures guidance

The recommendations in this interactive flowchart represent the view of NICE, arrived at after careful consideration of the evidence available. When exercising their judgement, healthcare professionals are expected to take these recommendations fully into account. However, the interactive flowchart does not override the individual responsibility of healthcare professionals to make decisions appropriate to the circumstances of the individual patient, in consultation with the patient and/or guardian or carer.
Commissioners and/or providers have a responsibility to implement the recommendations, in their local context, in light of their duties to have due regard to the need to eliminate unlawful discrimination, advance equality of opportunity, and foster good relations. Nothing in this interactive flowchart should be interpreted in a way that would be inconsistent with compliance with those duties.
Commissioners and providers have a responsibility to promote an environmentally sustainable health and care system and should assess and reduce the environmental impact of implementing NICE recommendations wherever possible.

Supporting information

Glossary

the expression of distinctive physiological and behavioural characteristics that have a chromosomal or genetic cause
people who provide 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
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)
an assessment of the function of behaviour that challenges, including functional analyses and other methods of assessing behavioural functions
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
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)
events or situations that are dependent on a behaviour and increase the likelihood of that behaviour happening again
an intervention 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
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
when a person intentionally harms themselves, which can include cutting and self-poisoning; it may be an attempt at suicide
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
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
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)
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
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

Paths in this pathway

Pathway created: May 2015 Last updated: October 2017

© NICE 2017. All rights reserved. Subject to Notice of rights.

Recently viewed