Introduction

This quality standard covers the care of children, young people and adults with a learning disability and behaviour that challenges. For more information see the challenging behaviour and learning disabilities overview.

Why this quality standard is needed

Some people with a learning disability display behaviour that challenges. 'Behaviour that challenges' is not a diagnosis and is used in this quality standard to indicate that although such behaviour is a challenge to services, family members and 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 can include aggression, self‑injury, stereotypic behaviour, withdrawal and disruptive or destructive behaviour. This quality standard uses the following definition of behaviour that challenges:

'Culturally abnormal behaviour(s) of such an intensity, frequency or duration that the physical safety of the person or others is likely to be placed in serious jeopardy, or behaviour which is likely to seriously limit use of, or result in the person being denied access to, ordinary community facilities.' (Emerson, 1995)[1].

The Royal College of Psychiatrists' 2007 report Challenging behaviour: a unified approach defined 'challenging behaviour' very similarly as:

'Behaviour of such an intensity, frequency or duration as to threaten the quality of life and/or the physical safety of the individual or others and is likely to lead to responses that are restrictive, aversive or result in exclusion.'

Services for children, young people and adults with a learning disability and behaviour that challenges were described in Mencap's 2013 Out of sight report as fragmented and at times ineffective and unresponsive to family needs, sometimes to the point of being abusive. For children and young people, services are generally provided within education (through their school and the educational psychology service), as well as through paediatric services and generic child and adolescent mental health services (CAMHS). Families report that they have to deal with a number of disconnected services and that many are unable to help. Moreover, very few early intervention services specific to behaviour that challenges are routinely available for children with a learning disability.

For adults, care is often managed through a community learning disabilities team (CLDT), which includes a range of professionals. In many areas, social workers are integrated into the CLDT. For adults with a learning disability and behaviour that challenges, day services, or the residential/supported living service, may try to support them initially. Depending on the nature of the behaviour that challenges, there may be a referral to the CLDT and the adult's family or carers may also have access to the CLDT through the local GP or other agencies.

However, carers often receive insufficient support from professionals who do not have the required expertise and do not provide help early enough[2]. The failure of services, and families not being able to cope, are likely to lead to overmedication for people with a learning disability, disengagement by professionals, and eventually 'out‑of‑area' placements.

This quality standard is focused on ensuring that assessment leads to personalised care planning and access to meaningful activities. The statements aim to ensure that the approaches used by staff to support people with a learning disability follow the least restrictive practice and promote privacy and dignity.

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

  • quality of life

  • experience of care

  • patient safety

  • safeguarding

  • control over daily life

  • premature mortality

  • physical and mental health and wellbeing

  • personal dignity.

How this quality standard supports delivery of outcome frameworks

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

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

Table 1 The Adult Social Care Outcomes Framework 2015–16

Domain

Overarching and outcome measures

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

Overarching measure

1A Social care‑related quality of life*

Outcome measures

People manage their own support as much as they wish, so that they are in control of what, how and when support is delivered to match their needs

1B Proportion of people who use services who have control over their daily life

1C Proportion of people using social care who receive self‑directed support, and those receiving direct payments

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

1D Carer‑reported quality of life**

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

1E Proportion of adults with a learning disability in paid employment

1G Proportion of adults with a learning disability who live in their own home or with their family

1I Proportion of people who use services and their carers who reported that they had as much social contact as they would like

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

Overarching measure

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

3A Overall satisfaction of people who use services with their care and support

3B Overall satisfaction with social services of carers

Outcome measures

Carers feel that they are respected as equal partners throughout the care process

3C The proportion of carers who report that they have been included or consulted in discussions about the person they care for

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

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

People, including those involved in making decisions on social care, respect the dignity of the individual and ensure support is sensitive to the circumstances of each individual

4 Safeguarding adults whose circumstances make them vulnerable and protecting from avoidable harm

4A The proportion of people who use services who feel safe

Outcome measures

Everyone enjoys physical safety and feels secure.

People are free from physical and emotional abuse, harassment, and neglect and self‑harm

People are protected as far as possible from avoidable harm, disease and injuries

People are supported to plan ahead and have the freedom to manage risks the way that they wish

4B The proportion of people who use services who say that those services have made them feel safe and secure

Placeholder 4C Proportion of completed safeguarding referrals where people report they feel safe

Alignment with NHS Outcomes Framework

* Indicator is complementary

** Indicator is shared

Indicators in italics in development

Table 2 NHS Outcomes Framework 2015–16

Domain

Overarching indicators and improvement areas

1 Preventing people from dying prematurely

Overarching indicator

1a Potential years of life lost (PYLL) from causes considered amenable to healthcare

i Adults ii Children and young people

1b Life expectancy at 75

i Males ii Females

Improvement areas

Reducing premature death in people with a learning disability

1.7 Excess under 60 mortality rate in adults with a learning disability

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

Overarching indicator

2 Health‑related quality of life for people with long‑term conditions*

Improvement areas

Ensuring people feel supported to manage their condition

2.1 Proportion of people feeling supported to manage their condition*

Enhancing quality of life for carers

2.4 Health‑related quality of life for carers*

4 Ensuring that people have a positive experience of care

Overarching indicator

4b Patient experience of hospital care

Improvement areas

Improving hospitals' responsiveness to personal needs

4.2 Responsiveness to in‑patients' personal needs

Improving children and young people's experience of healthcare

4.8 Children and young people's experience of inpatient services

5 Treating and caring for people in a safe environment and protecting them from avoidable harm

Overarching indicators

5b Severe harm attributable to problems in healthcare

Improvement areas

5.6 Patient safety incidents reported

Alignment with Adult Social Care Outcomes Framework

* Indicator is complementary

Indicators in italics in development

Table 3 Public health outcomes framework for England, 2013–16

Domain

Objectives and indicators

4 Healthcare public health and preventing premature mortality

Objective

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

4.3 Mortality rate from causes considered preventable**

4.4 Under 75 mortality rate from all cardiovascular diseases (including heart disease and stroke)*

4.5 Under 75 mortality rate from cancer*

4.6 Under 75 mortality rate from liver disease*

4.7 Under 75 mortality rate from respiratory diseases*

4.12 Preventable sight loss

Alignment with Adult Social Care Outcomes Framework and/or NHS Outcomes Framework

* Indicator is shared

** Indicator is complementary

Service user experience and safety issues

Ensuring that care is safe and that people have a positive experience of care is vital in a high‑quality service. It is important to consider these factors when planning and delivering services relevant to people with behaviour that challenges and a learning disability.

NICE has developed guidance and an associated quality standard on service user experience in adult mental health services (see the NICE pathway on service user experience in adult mental health services), which should be considered alongside this quality standard. They specify that people receiving care should be treated with dignity, have opportunities to discuss their preferences, and be supported to understand their options and make fully informed decisions. They also cover the provision of information to service users and their family members and carers. Quality statements on these aspects of service user experience are not usually included in topic‑specific quality standards. However, recommendations in the development sources for quality standards that affect service user experience and are specific to the topic are considered during quality statement development.

Coordinated services

The quality standard for learning disabilities: challenging behaviour specifies that services should be commissioned from and coordinated across all relevant agencies encompassing the whole care pathway for people with behaviour that challenges and a learning disability. A person‑centred, integrated approach to providing services is fundamental to delivering high‑quality care to people with a learning disability and behaviour that challenges.

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

Training and competencies

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

Role of families and carers

Quality standards recognise the important role families and carers have in supporting people with a learning disability and behaviour that challenges, in addition to the full involvement of the person themselves. If appropriate, health and social care practitioners should ensure that family members and carers are involved in the decision‑making process about investigations, treatment and care.



[1] Emerson E (1995) Challenging behaviour: analysis and intervention in people with learning disabilities. Cambridge University Press