Last Updated on May 10, 2016

The National Institute for Health and Care Excellence (NICE) has issued a new quality standard to help people with a learning disability and behaviour that challenges, and their families and carers, receive the personalised care and support they need, where they need it, when they need it.

Behaviour that challenges may serve a purpose for the person with a learning disability. For example, it might produce sensory stimulation, attract attention, avoid demands or help communicate with other people. This behaviour often results from the interaction between personal and environmental factors (for example, an empty or restrictive environment) and includes aggression, self-injury, stereotypic behaviour (such as rocking or hand flapping), withdrawal, and disruptive or destructive behaviour.

Prevalence rates for behaviour that other people find difficult or upsetting are around 5% to 15% in educational, health and 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% to 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 conditions (including dementia) are more likely to develop behaviour that challenges.

Services for people 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. In addition, very few early intervention services specific to behaviour that challenges are routinely available for children with a learning disability.

Carers of people with a learning disability and behaviour that challenges often receive insufficient support from professionals who do not have the required expertise and do not provide help early enough. The failure of services, and families not being able to cope, are likely to lead to over-medication for people with learning disabilities, disengagement by professionals, and eventually ‘out-of-area’ placements.

Professor Gillian Leng, Deputy Chief Executive and Director of Health and Social Care for NICE, said, 'All too often people with a learning disability and behaviour that challenges are given antipsychotic medicines, rather than properly addressing the sometimes complex interplay of environmental and individual factors that can be at the root of such behaviour.

'The NICE quality standard focuses on ensuring that an assessment of both the overall health of people with a learning disability, and of the behaviour that challenges, is carried out which then leads to personalised care planning and access to meaningful activities. The quality standard aims to ensure that the approaches used by staff to support people with learning disabilities follow the least restrictive practice and promote privacy and dignity.'

The quality standard includes eight statements aimed at staff who support people with learning disabilities. These include:

• People with a learning disability have a comprehensive annual health assessment from their GP.
• People with a learning disability and behaviour that challenges have an initial assessment to identify possible triggers, environmental factors and the function of the behaviour (ie why the individual is behaving in a particular way).
• 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.
• People with a learning disability and behaviour that challenges only receive antipsychotic medication as part of treatment that includes psychosocial interventions.
• Parents or carers of children aged under 12 years with a learning disability and behaviour that challenges are offered a parent-training programme.

Glynis Murphy, Professor of Clinical Psychology and Disability at the University of Kent and specialist member of the committee which developed the quality standard, said, 'Very often behaviour that challenges develops in childhood and results from a combination of personal characteristics (such as poor communications skills or autism, in addition to learning disabilities) and aspects of the environment (such as a barren or restrictive environment). People with such behaviour need early functional assessments and behaviour support plans, but they often receive too little service, too late, and families and care staff are not often offered the training they need in basic behavioural methods. This quality standard highlights what is needed to drive measurable improvements to the lives of people with learning disabilities and their families.'

The quality standard is available at www.nice.org.uk/guidance/QS101