Barriers to healthcare faced by people with a learning disability from ethnic minority populations: unpicking the effects of COVID-19

Problem

People with a learning disability face inequalities in their access to care, experience of care and health outcomes. Those from ethnic minority backgrounds who have a learning disability face a ‘double discrimination’, experiencing barriers to healthcare from two sources as members of two marginalised groups. The COVID-19 pandemic highlighted the extent of ethnic disparities in health outcomes and people with a learning disability were identified alongside those from ethnic minority backgrounds as high-risk groups of complications or death related to COVID-19. We aimed to explore the role of COVID-19 in terms of access, experience and outcomes of healthcare in people with a learning disability from ethnic minority backgrounds using a mixed methodology guided by a working group of self-advocates and carers. This is part of a wider project about barriers to healthcare in people from ethnic minority backgrounds with a learning disability.

Approach

We wanted to know what existing research says about the effects of COVID-19, whether there are differences in deaths of COVID-19 and what the experiences and views were of self-advocates. Methods included 1) a scoping review analysing existing literature, 2) quantitative analysis of deaths using Learning from lives and deaths (LeDeR) data and 3) workshop findings of people with lived experience. We will present the elements of our findings that explored the role of COVID-19 and the additional barriers to healthcare it presented to people with learning disability from ethnic minority backgrounds.

Findings

1) We found that there was limited existing literature exploring the effect of the COVID-19 pandemic on people who were both recognised as having a learning disability and came from an ethnic minority, however, we did find the literature documenting people from an ethnic minority background and people with a learning disability were at higher risk of contracting COVID-19. We found literature exploring vaccination rates and attitudes in people from ethnic minority backgrounds with a learning disability, which found differences in attitudes towards vaccination between ethnic groups. 2) In our analysis of LeDeR data, we found that COVID-19 became the leading cause of death across all ethnic groups, but variation between ethnic groups in the proportion of people who died of COVID-19. 3) Our workshop findings suggest that the pandemic led to reduced access to services and a sense of loneliness and uncertainty. They found vaccine hesitancy, with self-advocates describing mistrust, fear and complacency as barriers to vaccination.

Consequences

Our findings suggest that people from ethnic minority backgrounds with a learning disability were disproportionately affected by the COVID-19 pandemic in numerous ways. They suffered poor health outcomes and were at higher risk of hospitalisation, complications and death based on both learning disability and ethnicity. Our findings from workshops suggest existing access difficulties were worsened by the pandemic.