For anybody concerned with supporting someone with a learning disability described as having behaviour that challenges, there is unlikely to be anything in the new NICE guidelines that will come as much of a surprise. Key messages are to work with the person and their supporters, understand the function of the behaviour and work in the least restrictive way possible to reduce the impact of the behaviour on the person’s quality of life.
What is important however is that the guidelines have been produced and now exist to guide practice in this area. Nice Guidelines are produced by an agreed set of methods and involve comprehensive and systematic literature searches to identify relevant evidence.
Clinical evidence is appraised by the development group using the GRADE system which is used for rating the quality of evidence in systematic reviews and guidelines and grading the strength of recommendations in guidelines.
Interestingly, the evidence from systematic reviews was graded as ‘low’ or ‘very low’ quality without using the formal GRADE approach as NICE point out that a specific methodology has not been developed to grade this type of evidence. This low or very low grading of course impacts on the confidence with which the review group can make recommendations for practice as will be seen. NICE guidelines also go through an external consultation with stakeholders.
Definitions and prevalence
The guidelines used definitions of challenging behaviour derived from Emerson’s 1995 definition:
“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).
And the more recent Royal College of Psychiatrists (2007) definition (which is very similar to Emerson’s)
“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.”
The authors also point out that published estimates of the prevalence of challenging behaviour in people with learning disabilities have also been beset by methodological difficulties, using different populations, different definitions etc. they suggest however that the best estimate of an accepted range for prevalence of behaviour that challenges, is approximately 5 to 15% of people with a learning disability who are known to services.
There is however, they suggest, broad agreement that challenging behaviour results from a multiplicity of causes including biological, psychological, social and environmental.
The recommendations in the guidelines are structured under headings. We have not reproduced all the recommendations in this post, but have drawn attention to some key points under the headings as follows:
General principles of care
- Clear focus on the person and their family and supporters, taking into account the severity of learning disability and developmental stage; communication difficulties, and physical or mental health problems
- Support and interventions to be delivered in the least restrictive setting aiming to prevent, reduce, or stop the development of future episodes of behaviour, focusing on improving people’s support and increasing skills
- Prompt and coordinated access to specialist assessment, support, and intervention services when required for advice, supervision, and training
- Staff training for proactive strategies to reduce the risk of challenging behaviour and to deliver reactive strategies.
- Recognise impact on family members or carers and offer information on access to family advocacy and consider family support and information groups
- Provide skills training and emotional support to help family and carers take part in and support interventions.
- Strategies for early identification of initial behaviour that challenges including clear recording, awareness of physical health problems; environmental factors and changes to the person’s environment
- Annual physical health checks to include review of behaviour that challenges and any link to physical health problems along with review of current health interventions, including medications and related side effects, adverse events etc.
- The process to be person centred, with a focus on outcomes of reducing behaviour that challenges and improving quality of life taking into account resilience, resources, and skills of family members and carers
- Risk assessment to include regular review of suicidal ideation, self harm and self injury; harm to others; self neglect breakdown of family or residential support; exploitation, abuse, or neglect by others; rapid escalation of the behaviour that challenges.
- Functional assessment to be varied in complexity and intensity in line with complexity and intensity of the behaviour that challenges
- If a mental health problem might underlie behaviour, consider initial screening using mental health assessment scales
Psychological and environmental interventions
- Consider parent training programmes for parents or carers of children aged under 12 years with emerging, or at risk of developing, behaviour that challenges.
- Consider personalised interventions based on behavioural and cognitive behavioural principles and a functional assessment of behaviour, with clearly identified target behaviours and agreed outcomes and specified timescales to meet intervention goals.
- Consider antipsychotic drugs only in combination with psychological or other interventions and only if
- psychological or other interventions alone do not produce change within an agreed time
- treatment for coexisting mental or physical health problem has not led to a reduction in the behaviour
- the risk to the person or others is severe
These guidelines are a helpful pulling together of key recommendations for practice based on a comprehensive search and appraisal of the literature.
They reinforce exiting good practice in highlighting the need for person centred approaches; working with families, supporters and carers; functional assessments and clear targeted behavioural support planning. The guidelines suggest the use of psycho-social interventions, proactive strategies within the context of a positive behavioural support approach and the use of medications to manage challenging behaviour in some clear and specific circumstances.
However, it must also be noted that the quality f the evidence upon which the recommendations are based was usually low or very low, meaning that the majority of recommendations are phrased as ‘consider…’.
It is also important to recognise that the swift response of specialist teams recommended by the guidelines must be set in the context of the reality of available resources. We know from the increasing numbers of people who find themselves being placed far away from their local communities of support as a result of challenging behaviour that the capacity to deliver local services is currently insufficient.
There also exist currently limitations to the competencies of staff in some residential and supported living settings to recognise and understand the underlying causes of challenging behaviour and implement appropriate support plans as a result of lack of training, supervision and ongoing practice leadership.
We have posted many times on this site about the use of anti-psychotic medications in challenging behaviour. Following the guidelines set out by NICE should see a reduction in their use, but this must be accompanied by investment in skills, competencies in functional assessment, behavioural support planning and positive behavioural support approaches if the guidelines are to achieve what they no doubt set out to – significant improvements in the quality of life of people with learning disabilities who have behaviour that challenge.
Challenging behaviour and learning disabilities: prevention and interventions for people with learning disabilities whose behaviour challenge; Easy Read version
Emerson E, Bromley J. The form and function of challenging behaviours. Journal of Intellectual Disability Research. 1995;39:388-98.
Royal College of Psychiatrists. Challenging behaviour: a unified approach. College Report CR144. London: Royal College of Psychiatrists, British Psychological Society and Royal College of Speech and Language Therapists; 2007.