Helping people with a learning disability, at risk of behaviour that challenges, to avoid harm from psychotropic medicines

Behaviour that challenges is not a diagnosis, it describes a range of behaviour that some people with learning disability may display when their needs are not being met.

Where possible, psychotropic medicines should be avoided for behaviour that challenges. But when needed, prescribing should be at the lowest dose, be reviewed regularly, and stopped as soon as possible.

There are about 1.3 million people with a learning disability in England(1). Approximately 14% of people with a learning disability are prescribed antipsychotic medicines compared to 1% of people without a learning disability.

Psychotropic medications include antipsychotics, antidepressants, anxiolytics (benzodiazepines), anti-seizure medication (antiepileptics), sedatives (including hypnotics) and stimulants. They affect the working of the brain and impact on a person’s mood, thoughts, perceptions and behaviour. These medications can often have side-effects and can also affect a person’s quality of life, so should only be used if there is a clear clinical indication. 

We aim to support selected Integrated Care Systems across England to take a systems approach to change that brings together NHS providers, social care, voluntary sector and lived experience. 

We have estimated the possible harms that could be avoided from this work as: 

• For every three people with a learning disability and behaviour that challenges who are prescribed an antipsychotic for longer than three months, one person will develop a movement disorder who would not have if all three were supported without antipsychotics.(3) 
• For every two people with a learning disability and behaviour that challenges who are prescribed a psychotropic medication for any duration, one will have side-effects that significantly lower their quality of life, who would not have if both people had been supported without psychotropic medication.(4)

1. Management of behaviour that challenges requires proactive care planning and shared decision making with patients and their carers/ advocates, that incorporates non-pharmacological management* to reduce overprescribing of psychotropics and the associated avoidable harm.
2. Multi-agency, system working is vital to ensure a co-ordinated approach that enables holistic support and improved accessibility across the entire pathway of  care.
3. A recognised challenge is how to balance short- and long-term health needs and goals in this patient group, weighing up the risk vs benefits of using psychotropics which is often complicated by a fear of destabilisation and variability in access to non-pharmacological management*. 

*e.g. Positive Behavioural Support (PBS), sensory integration, social prescribing and psychological approaches including mindfulness and lifestyle interventions. 

• Personas for people with learning disabilities
• Toolkit for how to use the Personas
• Medications and my Mental Health information toolkit
• Easy Read Medication Leaflets