Helping people with a learning disability, who have behaviour that challenges, to avoid harm from psychotropic medicines

About the programme

Health Innovation West Midlands (HIWM) is commissioned to deliver the national Medicines Safety Improvement (MedSIP) Programme. This programme has an overarching ambition to help patients get the maximum benefit from their medicines, reduce waste and reduce medication related harm in health and social care, focusing on high-risk drugs, situations and vulnerable patients.

NHS England and Improvement launched MedSIP as part of the national patient safety strategy and this is delivered locally by the West Midlands Patient Safety Collaborative (WMPSC).

This new programme, launched in April 2025, will focus on helping people with a learning disability, who have 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(2).

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.

Key Principles

Key principles for the delivery of this priority are:

  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 over prescribing 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.

Programme Ambitions

The WMPSC will deliver the “Helping people with a learning disability, who have behaviour that challenges, to avoid harm from psychotropic medicines” priority. 2025/26 is year two of a three-year initiative.  2025/26 will focus on moving willing ICBs through Phases 1-4 of the 7 Phase Whole System Approach Framework (WSA7). (See figure 1 and 2).

Figure 1

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.

The figure below outlines the seven-phased, whole system approach which the WMPSC will use to support at least one Integrated Care System.

Figure 2

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)

Patient Story

See Michael’s story below.

References

  1. Mencap. How common is learning disability in the UK? : Mencap; [Available from: https://www.mencap.org.uk/learning-disability-explained/research-and-statistics/how-common-learning-disability.
  2. England N. Health and Care of People with Learning Disabilities, Experimental Statistics 2022 to 2023: NHS England; 2023 [Available from: https://digital.nhs.uk/data-and-information/publications/statistical/health-and-care-of-people-with-learning-disabilities/experimental-statistics-2022-to-2023.
  3. Scheifes A, Walraven S, Stolker JJ, Nijman HL, Tenback DE, Egberts TC, et al. Movement Disorders in Adults With Intellectual Disability and Behavioral Problems Associated With Use of Antipsychotics. J Clin Psychopharmacol. 2016;36(4):308-13.
  4. Scheifes A, Walraven S, Stolker JJ, Nijman HLI, Egberts TCG, Heerdink ER. Adverse events and the relation with quality of life in adults with intellectual disability and challenging behaviour using psychotropic drugs. Research in Developmental Disabilities. 2016;49-50:13-21

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