Last Updated on May 8, 2017

There needs to be a shift away from an over-reliance on antipsychotic medication given to people with a learning difficulty to manage challenging behaviour, the National Institute for Health and Care Excellence (NICE) said in guidance published today.

'A significant proportion of the antipsychotic medication given to people with a learning disability is for the management of behaviour that challenges,' said Professor Mark Baker, Director of the Centre for Clinical Practice at NICE. 'Too often medication is the first resort in attempting to manage what is often the result of a complex interaction between multiple individual and environmental factors. This guideline highlights the need for these factors to be considered systematically and comprehensively so that interventions to address behaviour that challenges in people with a learning disability can be tailored and appropriate to the individual.'

Prevalence rates for behaviour that other people find difficult or upsetting are around 5% to 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% 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 problems (including dementia) may be more likely to develop behaviour that challenges.

Behaviour that challenges 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 (such as rocking or hand flapping), 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.

The areas covered by the guideline include the support and interventions that should be available for family members and carers of people with a learning difficulty and behaviour that challenges which aim to improve the health and wellbeing of the family and carers.

The guideline also covers the identification of those at risk of developing behaviour that challenges as well as the assessment of people with learning disabilities who have already developed behaviour that challenges (including assessment of the physical and social environment, parent, carer and staff attitudes and skills and staff competence).

Recommendations on interventions to reduce and manage behaviour that challenges are also included in the guideline. These include environmental changes, psychosocial and pharmacological interventions, and support for family and carers (including paid carers) which aim to improve the health and wellbeing of the family and carers.

Key recommendations in the guideline include:

Team working

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

Support and interventions for family members or carers

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

• Recognise the impact of living with or caring for a person with a learning disability and behaviour that challenges.
• Explain how to access family advocacy.
• Consider family support and information groups if there is a risk of behaviour that challenges, or it is emerging.
• Consider formal support through disability-specific support groups for family members or carers and regular assessment of the extent and severity of the behaviour that challenges.
• Provide skills training and emotional support, or information about these, to help them take part in and support interventions for the person with a learning disability and behaviour that challenges.

Medication

Consider antipsychotic medication to manage behaviour that challenges only if:

• Psychological or other interventions alone do not produce change within an agreed time; or
• Treatment for any coexisting mental or physical health problem has not led to a reduction in the behaviour; or
• The risk to the person or others is very severe (for example, because of aggression or self-injury).

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

The guidance is available on the NICE website www.nice.org.uk/guidance/NG11