Psychotropic deprescribing in ethnic minority individuals with a learning disability requires a more nuanced approach

Health inequalities are pervasive across our healthcare system, affecting different patients in different ways and requiring an increasingly nuanced approach to tackle them.

For individuals from an ethnic minority background, health inequalities are well documented. Evidence from the NHS Race and Health Observatory indicates that these individuals often receive poorer healthcare and experience worse health outcomes compared with their white counterparts^​1​. This was exemplified during the COVID-19 pandemic, when people from ethnic minorities were disproportionately affected and exposed to systemic inequities in healthcare access and delivery that heightened their vulnerability^​2,3​.

People with a learning disability also experience inequitable health outcomes. In 2017, NHS England set up the Learning Disabilities Mortality Review (LeDeR) programme to understand why people with a learning disability are dying at a younger age compared with the rest of the population. Reports published since the programme launched have highlighted that individuals with a learning disability die, on average, 20 years earlier than those without a learning disability^​4,5​. 

People from ethnic minority backgrounds who also have a learning disability may face ‘double discrimination’, encountering complex and significant barriers that shape their healthcare experiences^​6​. 

Research by the NHS Race and Health Observatory found that people with a learning disability from minority ethnic backgrounds have a life expectancy of 34 years, compared with their white counterparts who, on average, live to 62 years^​1​. This disparity is further illustrated by data from the LeDeR programme, which demonstrate that individuals from all ethnic minority groups with a learning disability tend to die at a younger age than those of white ethnicity, even when adjusting for factors such as sex, region and socio-economic status^​7​. 

For example, males of Asian or Asian British ethnicity with profound and multiple learning disability have the lowest median age at death, at just 30 years^​7​. While the LeDeR data should be interpreted cautiously owing to under-reporting of deaths among ethnic minority groups, there is an urgent need for targeted interventions to address these inequities.

Overprescribing

One area that has been of growing concern for this group is the overprescribing of psychotropic medicines. Psychotropic medicines are commonly prescribed to manage various mental health conditions and certain neurological disorders, such as epilepsy^​8​. 

While research has suggested that the rate of mental illness in people with a learning disability is double that of the general population, and there is an increased prevalence of epilepsy — other evidence suggests that some of the psychotropic medicines used to treat these illnesses may be overprescribed among those with a learning disability^​9,10​. This is particularly the case when the medicine is prescribed for off-label uses aimed at controlling ‘behaviours of concern’, such as aggression and destructiveness, in the absence of a documented diagnosis^​11​. People from ethnic minority backgrounds are at a greater risk of being prescribed psychotropic medicines to manage behaviours that challenge, with audits highlighting that these medicines are not reviewed as frequently as they should be^​2​. 

Overprescribing in this way not only exposes these individuals to unnecessary health risks, but also imposes significant burdens on them and their carers^​12,13​. The long-term use of psychotropic medicines, especially antipsychotics, is associated with increased risks of obesity, bone health deterioration, metabolic syndrome and cardiovascular disease, all of which exacerbate the existing health inequalities faced by this population^​14​.  In addition to physical health challenges, individuals and carers face emotional burdens, including stress from managing complex treatment regimens, which can lead to medicines being taken incorrectly or discontinued altogether^​12​.

Furthermore, such inappropriate prescribing practices may raise ethical concerns, particularly when medicines are used to address needs that potentially could be met in other ways. Some experts are of the opinion that this overprescribing may potentially be violating the rights of people with disabilities, as outlined by the United Nations^​15​.

STOMP programme

In response to concerns around this overprescribing, NHS England launched the STOMP (Stopping Overmedication of People with Learning Disabilities and Autism) programme in 2015^​16​. This initiative is aimed to reduce inappropriate psychotropic prescribing through adherence to National Institute for Health and Care Excellence guidelines, regular medication reviews and appropriate deprescribing. Despite these efforts, evidence from NHS Digital, published in 2022, suggests decreases in antipsychotic prescriptions have been offset by increases in the prescribing of anticonvulsants and antidepressants^{​17–19​}.

Progress in deprescribing psychotropic medicines is often hindered by barriers, such as time constraints, limited access to non-pharmacological interventions and insufficient social care provision^{​20–22​}.

This is further complicated by the fact that psychiatric conditions may present differently in people with a learning disability in comparison to the general population, as well as the risk of diagnostic overshadowing^​23​. This occurs when symptoms arising from physical or mental ill health are wrongly attributed to a person’s learning disability, leading to delayed diagnosis or treatment. 

STOMP requires a holistic multidisciplinary approach with a view to enhancing quality of life^​19​. Shared decision-making, adherence to the Mental Capacity Act and making ‘best interest’ decisions where appropriate must be integral to this process. 

The West Midlands multicultural STOMP project is a good practice initiative aimed at improving STOMP implementation for people with a learning disability from an ethnic minority background by identifying potential barriers to its implementation^​24​.

Although easy read information in different languages regarding STOMP is available on the NHS England website, this does not go far enough^​25​. More research is needed to evaluate the complexities around enablers and barriers to deprescribing psychotropic medicines within a STOMP framework that meets the needs of diverse communities.

System level issues

People with a learning disability from ethnic minority backgrounds face profound inequalities in healthcare access. These intersecting challenges demand a more nuanced and culturally sensitive approach to healthcare to ensure equitable treatment and outcomes for all individuals, regardless of their ethnicity or disability. 

In addition to supporting individuals with a learning disability, it is important to address the system-level issues. This should include workforce planning to reflect the diversity of the local population, education of healthcare providers in cultural competence and improving the collection and recording of ethnicity data. Community engagement, including awareness campaigns explaining the value of being on a GP learning disability register and attending annual health checks in primary care should also be prioritised, alongside the co-production of STOMP pathways tailored to meet the needs of all individuals with a learning disability^​1,26​.

In conclusion, addressing the overprescribing of psychotropic medicines in individuals from ethnic minority backgrounds with a learning disability requires a multifaceted approach that combines culturally sensitive care, systemic reforms and targeted interventions to ensure equitable and effective healthcare.