People with a learning disability have long faced significant inequalities in health and social care, with research finding they are three to four times more likely to die from avoidable causes, with ethnicity remaining a significant predictor of death at a younger age.1,2 However, the uptake of annual health checks is particularly low among this group.
The We deserve better: Ethnic minorities with a learning disability and access to healthcare report revealed people with a learning disability from Black, Asian, and minoritised ethnic backgrounds face an increased risk of earlier death, at an average age of 34 years compared to their White counterparts, who have a life expectancy of 62 years of age.3 Meanwhile, the most recent Learning Disabilities Mortality Review from 2022, published in November 2023, found that in comparison with those from White ethnic backgrounds, those from Black, Black British, Black Caribbean, or Black African backgrounds faced a 190% increased risk of dying earlier while those from Asian or Asian British backgrounds faced a 150% increased risk.2
The Covid-19 pandemic had a disproportionate impact on minoritised ethnic and migrant communities and these inequalities were only exacerbated for people with a learning disability who experienced significantly higher rates of mortality than the general population.4 For instance, the Care Quality Commission (CQC) reported an increase of 134% in the number of deaths of people with a learning disability during the first lockdown in the UK,5 while the number of Covid-19 deaths among Asian, Asian British, Black and Black British people with a learning disability was significantly higher than the number of deaths from all causes in the corresponding period of the previous two years for these groups.
The Race Equality Foundation and Learning Disability England have been working together for several years to highlight and address the intersectional inequalities experienced by people with a learning disability from Black, Asian and minoritised ethnic communities. In 2024, we focused our attention on annual health checks, embarking on a project to produce a set of awareness raising materials, designed and developed by people with a learning disability from our communities.
To do so, we worked with a co-production group to understand people’s experiences of annual health checks, explore the barriers that prevent people from accessing them, and understand what a good annual health check should look like. The result is a co-produced video and Easy Read leaflet, designed to raise awareness and improve the uptake of annual health checks.
An annual health check should ensure that people with a learning disability receive the necessary care to live well, that any unmet health needs are met, and that ongoing health conditions are treated and managed. As a preventive intervention, an annual health check should contribute to improving wellbeing and ultimately reduce early and avoidable deaths, and there is evidence to show that these checks can improve survival rates.7
The NHS Long-Term Plan (2019) committed to improving the uptake of annual health checks for those aged 14 and over with learning disabilities, setting a yearly participation target of 75%.8 However, the 2022 LeDeR report revealed that 27% of people with learning disabilities did not receive an annual health check in the year before their death.2 Our co-production group was clear that attending an annual health check was an important and crucial step in supporting the health and wellbeing of people with a learning disability.
A good annual health check should begin with a pre-questionnaire, a resource sent in advance to people with a learning disability and their support network, helping them to prepare for the check by explaining the process and what to expect. During the check, key physical assessments should be carried out, including weight measurement, heart rate and blood pressure monitoring, as well as a review of medications, and guidance and help about staying well.
Practical issues, such as the timing of appointments, ease of booking and the length of the appointment itself are also factors in what makes a good annual health check. Our co-production group noted for instance that people with learning disabilities may struggle to communicate and as such need more time to express how they are feeling during an appointment. Following the check, a clear plan with actionable steps for managing the health and care needs of people with a learning disability should be developed, involving both providers of services, those with a learning disability and carers and support networks. This is an important step in ensuring that people feel in control of their health.
Key characteristics of a good annual health check
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Our research also identified ways that the needs of Black, Asian and minoritised ethnic people with a learning disability could be better met. To start, services should work to increase awareness of the importance of being on the learning disability register, and alongside this, work together to provide more accurate ethnicity data across the system more broadly. The co-production group also highlighted the importance of providing information in multiple languages and offering interpreters during appointments to make annual health checks accessible to people for whom English is a second language.
In addition, more engagement work with trusted community members and local organisations was identified as a way of raising awareness and building trust. Lastly, our research found that improving the cultural competency of healthcare providers would help them better understand and meet the needs of Black, Asian and minoritised ethnic communities, including being aware of different cultural beliefs about disabilities and addressing fears that families may have.
The health inequalities faced by people with learning disabilities, and the disproportionately high rates of avoidable deaths faced by Black Asian and minoritised ethnic communities require us all to take urgent action. The Race Equality Foundation and Learning Disability England have focused on annual health checks as one critical tool in reducing the inequalities in health that our communities face. By listening to those with lived experience, our research found that these checks must be accessible, culturally sensitive, and well-supported to be effective, while our co-produced video and Easy Read leaflet highlights the need for tailored, culturally relevant resources and their role in raising awareness of annual health checks.
As we continue this work, the Foundation and Learning Disability England will be working with voluntary sector organisations, delivering training on the importance of annual health checks and how to work with their communities to increase the uptake of this important preventative measure.
This is a sample article from our latest issue of In Focus: Addressing and tackling health inequalities.
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