Double Discrimination: The Healthcare Inequalities facing People with a Learning Disability from Black, Asian and Minority Ethnic Communities
People with a learning disability have long faced serious health inequalities, with recent figures from the Learning Disability Mortality Review (LeDeR) showing that they are dying 25 years younger than the general population [i] and are more likely to die avoidably. A recent report from the Race Equality Foundation examined how these inequalities are exacerbated for people with a learning disability from Black, Asian and minority ethnic (B.A.M.E) groups, with the impact of the COVID pandemic demonstrating just how serious the situation is.
Throughout the pandemic, people from B.A.M.E communities have died disproportionately, as have people with a learning disability, with the Race Equality Foundation’s report pointing out that people with a learning disability are six times more likely to die from COVID - and 40% of the deaths were of people from Black and Pakistani communities. People of Bangladeshi origin are twice as likely to die from COVID, even before having a learning disability is taken into account.
Much of this is a sad reminder of evidence from the LeDeR review earlier this year, which showed the shocking disparity in life expectancy of males with a learning disability from ethnic minorities. The lowest median age at death averaging just 33 years old (2018-2020) was for males from minority ethnic groups who have severe, profound and multiple learning disabilities. Yet the median age of death of white British men with severe, profound and multiple learning disabilities was by comparison, 59 years old.
It is true that the LeDeR report urges us to view these alarming figures with caution, as many people from B.A.M.E communities are missing from the data. My worry is that this 'caution' could make it easy to be complacent, or reluctant to take action. The very fact that representation from B.A.M.E communities in the LeDeR data is low (which is gathered only after a person has died), shows us that adults with a learning disability in these groups are underrepresented in the healthcare system, and unlikely to be accessing the help and support they need when they are alive. The data, combined with the knowledge that so many people are 'missing', provides an even more urgent call to action.
A lack of representation – as well as awareness – is also an issue with the GP Learning Disability register. The register (England only) provides the GP with a list of people who have a learning disability. If one is on the register it makes it easier to liaise with healthcare professionals who should recognise people’s individual needs and help them get access to the services and support they need in a timely way. It also entitles people to annual health checks which we know are key to tackling some of the health inequalities people with a learning disability face, with the most recent LeDeR report showing that people who had not had an annual health check in the previous year were 1.5 times more likely to die (18-49 years old). The GP learning disability register in England is also used as a tool in the prioritisation for COVID vaccination, and entitles people to a flu jab.
Data from the Quality Outcomes Framework (2019/20) shows that only 308,000 of the 1.2 million people with a learning disability in England were on the Learning Disability register. Using data from LeDeR, we can reasonably assume that those missing from the register
include a very high number of people from B.A.M.E backgrounds. This is why in the coming months, Mencap, alongside people with a learning disability, will be focusing on how we can raise awareness of the benefits of the GP Learning Disability Register amongst underrepresented B.A.M.E communities and encourage more people to sign up.
There is much that still needs to be done. With so little information available, because of the lack of focus on the experiences of people from B.A.M.E groups, it can sometimes feel like there are more questions than answers.
Mencap has not always done enough to engage with and support the thousands of people with a learning disability from B.A.M.E communities who experience intersectional discrimination - and as part of our commitment to equity and inclusion we know we must do better.
We are building stronger links to local communities and within our new ways of working we are supporting people to build their own capabilities. This is the start of a new project to ensure that those who are doubly discriminated against can access the healthcare they deserve.
[i] University of Bristol (2021) University of Bristol LeDeR annual report 2020
Data from LeDeR’s report suggests that in 2018-2019, the disparity between the median age at death for people with a learning disability (age 4 years and over) and the general population (all ages) was 23 years for males and 27 years for fe