New review identifies poorer care and lower life expectancy for ethnic minorities with a learning disability

People with a learning disability from Black, South Asian (Indian, Pakistani or Bangladeshi heritage) and minority ethnic backgrounds face shorter life expectancy triggered by poorer healthcare access, experience and outcomes.

The average age of death for people with a learning disability who are from an ethnic minority is 34 years, just over half the life expectancy of white counterparts, at 62 years of age. Of those with a learning disability who die in hospital, 51% from ethnic minority groups have a ‘Do Not Attempt Cardiopulmonary Resuscitation’ (DNACPR) recommendation, compared to 73% for those who are white.

These, and other findings, will be discussed as the independent NHS Race and Health Observatory launches its new recommendations report that examines two decades of research looking into discriminatory barriers preventing equitable healthcare treatment.

Supported by NHS England, the comprehensive five-part report contains data, personal interviews and analyses undertaken by the University of Central Lancashire, in collaboration with Manchester Metropolitan University, Learning Disability England and the Race Equality Foundation.

The report titled ‘We deserve better: Ethnic minorities with a learning disability and access to healthcare’ will be launched online on Tuesday 25^th July between 2pm – 3.30pm. The report is aimed at health and care leaders, policy leads, practitioners and researchers.

Experts by experience who have, or care for someone with a learning disability, will join the panel of key speakers exploring how ethnicity and disability is resulting in compounded discrimination and leading to harmful adverse outcomes. A short video featuring patient group representatives, individuals with a learning disability and carers, will also be featured at the launch.

The review captures the lack of reasonable adjustments and failure to recognise individual needs. Other obstacles identified include language barriers, cultural and religious insensitivity, a lack of information in easy read format, and a lack of information during transitional care in hospital and home.  Authors emphasise the need for healthcare providers to tailor support needs and recognise and record accurate, granular ethnicity data.

Dr Habib Naqvi, Chief Executive of the NHS Race and Observatory, said:

“The disparities identified by this review are unjustifiable and avoidable. For too long, people with a learning disability from an ethnic minority background have received inequitable care and poor outcomes. The NHS Race and Health Observatory will work with all relevant organisations to help drive further, faster progress in ensuring people with a learning disability from ethnic minority backgrounds receive equitable, high-quality health and social care provision. We welcome this report and applaud NHS England for calling this review as a much-needed priority.”

Whist a number of recommendations are primarily for NHS England, the Department for Health and Social Care, and Integrated Care Systems and Boards, the review urgently calls for future research to explore what is driving the lower age at death in ethnic minorities with a learning disability, including avoidable causes of death and modifiable contributory factors.

A consistent theme from those with lived experience was a lack of information, accessible information, contact and support across GP, community and hospital-based services.

Siraaj Nadat, a Senior Quality of Life Facilitator at Changing Our Lives and part of the review’s working group, said:

“They need to see the person first, not the disability or race and work with the person on how best to help them. We need to do more and improve. We need to work with both health and social care. Being a disabled man from a minority ethnic community I am not only passionate to talk about the health inequalities that these communities face but to see change happen.”

There is under reporting of deaths for ethnic minority groups to the Learning Disability Mortality Review (LeDeR) which constitute just 9.1% of the notification data compared to 2021 census data estimates of the ethnic minority population in England of 18.3%.  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. The lowest proportion of notifications to LeDeR was of people whose ethnicity was denoted as ‘Other’, reflecting 1.3% of notifications.

Umesh Chauhan, Professor of Primary Care, University of Central Lancashire, said:

“The findings of the report are strengthened by our approach to work closely with our partner organisations (Manchester Metropolitan University, Race Equality Foundation and Learning Disability England) guided by the working group of people with lived experience looking at not only published research but data currently available to us.

“A series of recommendations include the need to highlight better recognition and recording of ethnicity to help improve culturally-sensitive and appropriate allocation of healthcare resources. However, there are gaps in our knowledge which require exploration, for example the care experienced by certain minority groups such as travellers and the Jewish community.”

Jabeer Butt, Chief Executive, Race Equality Foundation, 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.”

Some carers provided personal accounts of services where they felt racial discrimination. Examples included being spoken to in a distasteful or derogatory way, being denied access to treatment that was deemed to be beneficial or being prompted to pay for services which were expected to be free. This also led to many carers fearing for their loved ones’ futures. One participant cited how discrimination can arise from a health practitioner from an ethnic minority background too.

Aisha Edwards, Parliament Representative, Speak Up Lewisham, said:

“Some disabilities you can see and some of them are hidden, so don’t just assume that a person is fine. Sometimes doctors talk to the carer instead of the patient. It’s just not nice to see. I would like to see people treated better. I really appreciated working on the project and I think people should read and understand the report.”

Other recommendations based on findings include, but are not limited to:

• Adding ethnicity data to the mandated data collected as part of Health and Social Care of People with Learning Disabilities dataset, to enable regular and ongoing analyses.
• Medical Examiners in England should have specific training and advice on identifying deaths of people with a learning disability and autistic people and notification to the LeDeR programme.
• Future research on learning disability should aim to investigate differences in health outcomes by ethnicity.
• All organisations providing health and care for people with a learning disability must meet their statutory requirements of making reasonable adjustments, in line with the Equality Act 2010 to facilitate access to services.
• NHS England and its partners should run an awareness campaign to explain to people with a learning disability and their carers from ethnic minority groups the value of being on the GP learning disability register and attending annual health checks.
• Develop inclusive interventions for carers of people with a learning disability from ethnic minority backgrounds that address the range of challenges faced by carers, including those related to their well-being.

Tom Cahill, National Learning Disability and Autism Director, NHS England, said:

“The NHS locally and nationally is working extremely hard to improve the care and support available to people with a learning disability, but it is crucial that nobody is left behind by these improvements, which is why we commissioned this important piece of work.

“This report is a useful reminder of the need to take specific action to address longstanding health inequalities experienced by people from ethnic minority backgrounds, but most importantly it provides concrete recommendations which can be used to improve care across the country.

“The NHS is already taking actions to address some of the issues this report highlights, including introducing a new requirement in April for GPs to record the ethnicity of people with a learning disability as part of the learning disability annual health check.”

Within four pieces of legislation scrutinised (Carers and Disabled Children Act 2000; Children and Families Act 2014; Care Act 2014 and the Down Syndrome Act 2022 – none contained information or specific policy direction in relation to people with a learning disability from any ethnic minority group.