Learning Disability Today
Supporting professionals working in learning disability and autism services

People with learning disabilities from ethnic minority backgrounds dying at half the age of white peers

People with a learning disability from ethnic minority backgrounds die at an average age of just 34, compared to an average age of 62 for white people with learning disabilities.

This significantly shorter life expectancy is triggered by poorer healthcare access, language barriers, cultural and religious insensitivity, and a lack of information during transitional care in hospital and home.

This new, stark research is published in a report titled We deserve better: Ethnic minorities with a learning disability and access to healthcare, which reviews the barriers to healthcare faced by people with a learning disability from ethnic minority backgrounds.

Authors of report worked closely with a group of experts by experience

The report highlights that the intersection of ethnicity and disability results in compounded discrimination, and this discrimination exacerbates inequalities in relation to health outcomes and healthcare.

While these existing disparities are predominantly due to the social determinants of health, they are then fuelled further by discrimination, racism and marginalisation.

In turn, people with a learning disability from ethnic minority backgrounds experience poorer access and experiences of healthcare services and poorer health outcomes.

To explore these barriers further, researchers from the University of Central Lancashire worked in collaboration with Manchester Metropolitan University, Learning Disability England and the Race Equality Foundation to produce this new report.

The authors worked closely with a group of experts by experience who either have or care for someone who has a learning disability, and are from ethnic minority backgrounds. The working group guided the research process.

The importance of good communication

In light of the report’s findings, the authors are now calling on healthcare providers to tailor support needs and recognise and record accurate, granular ethnicity data, as currently, there is under reporting of deaths for ethnic minority groups to the Learning Disability Mortality Review (LeDeR).

Indeed, of Learning Disability Mortality Review (LeDeR) notifications from 2018-2021, 90.2% were of people denoted as ‘white’, and 9.1% were of people of ethnic minority groups. This compares to 2021 consensus data which estimates the ethnic minority population in England to be 18.3%.

The authors are also urgently calling for new research which explores what is driving the lower age at death in ethnic minorities with a learning disability, including avoidable causes of death and modifiable contributory factors.

Jabeer Butt, Chief Executive of the Race Equality Foundation and co-author of the report, said: “Our report suggests that people from ethnic minority backgrounds with a learning disability experience disparities in healthcare, and some also experience discrimination. We found that there was often a clear lack of reasonable adjustments made and a failure to recognise and accommodate an individual’s needs when receiving care. The intersection of disability and ethnicity compounds discrimination and exacerbates inequalities in healthcare access and the experiences of people with a learning disability from ethnic minority backgrounds.

“We want clinicians and those working within healthcare to have much better and effective communication with their patients and understanding of learning disability. It’s so important that reasonable adjustments are adhered to. Healthcare providers should do more to actually implement existing policies relating to people with a learning disability. Coproduction is one of the best ways of helping to address health inequalities. We need to hear patient voices more and act on any disparity.”

Online event will launch the report

The report will be launched at 2pm today at an online event hosted by the NHS Race and Health Observatory and the Race Equality Foundation.

The webinar is for those working in health and care, practitioners, researchers and those interested in closing the gap in health inequalities. It will present key messages from the research and hear from those with lived experiences and researchers.

During the webinar, recommendations on how to improve the experience of those from ethnic minority backgrounds living with a learning disability will be outlined.

Key speakers include:

  • Prof Umesh Chauhan, Lead Author – GP Partner, Professor of Primary Care, University of Central Lancashire
  • Tom Cahill, National Learning Disability and Autism Director, NHS England
  • Christina Roberts, Lead Author – Research Assistant, University of Central Lancashire
  • Samantha Clark, Working Group Co-Chair – CEO, Learning Disability England
  • Jabeer Butt OBE, Working Group Member – CEO, Race Equality Foundation
  • Aisha Edwards, Working Group Co-Chair – Parliament Representative, Speak Up Lewisham
  • Siraaj Nadat BEM, Working Group Member – Senior Quality of Life Facilitator, Changing Our Lives.

To reserve a spot at this free event, click here.

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