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We deserve better

Tracey Bignall, Senior Policy and Practice Officer at Race Equality Foundation

Promoting equality of healthcare services for BAME communities

Tracey Bignall, Senior Policy and Practice Officer at Race Equality Foundation

Healthcare equality is a fundamental principle of any just and inclusive society. In the UK, however, significant disparities persist in access to healthcare services for people from ethnic minorities with learning disabilities and autism.

From our recent research with the NHS Race and Health Observatory, people with a learning disability from Black, South Asian (Indian, Pakistani or Bangladeshi heritage) and minority ethnic backgrounds face shorter life expectancy as a result of poorer healthcare access, experience and outcomes.

The report ‘We deserve better: Ethnic minorities with a learning disability and access to healthcare’, is a comprehensive five-part review containing data, personal interviews and analyses undertaken by the University of Central Lancashire, in collaboration the NHS Race and Health Observatory, supported by NHS England, with Manchester Metropolitan University, Learning Disability England, and the Race Equality Foundation. The review examined two decades of research into discriminatory barriers preventing equitable healthcare treatment.

We found that people with a learning disability die at a younger age than people without a learning disability, and they have more health problems. And this is even worse for people with a learning disability who are from ethnic minority backgrounds. They die even younger than white people with a learning disability, and they have more problems with their care.

The We Deserve Better report, taken together with several other studies, highlights the stark disparities faced by people from ethnic minorities with learning disabilities and autism in accessing healthcare services. Also, a report by Mencap, found that individuals from ethnic minority backgrounds often encounter language barriers, cultural insensitivity, and a lack of understanding from healthcare providers. These issues can lead to misdiagnosis, inappropriate treatment, and delayed care.

We’ve also seen a lack of representation of people from ethnic minorities in clinical trials and research studies, leading to limited knowledge about the unique healthcare needs of this population. This knowledge gap hampers the development of culturally sensitive interventions and equitable healthcare policies.

Social care professionals can play a crucial role in bridging the gap and ensuring proper access to healthcare services for individuals from ethnic minority backgrounds with learning disabilities and autism. They are vital champions in ensuring equitable access to healthcare services. They can aid support in three key ways – advocacy, education, and guidance.

Within our complex healthcare system, social care workers can be key advocates for ethnic minorities with learning disabilities and autism to navigate the system. They can ensure that the voices of these individuals are not lost in busy healthcare settings. Social care professionals can also use their expertise and dedication to  help support any unique concerns of their clients.

Social care professionals are also educators, imparting vital knowledge to healthcare providers that can extend beyond conventional medical training; they can also have the cultural competence and the nuanced requirements of individuals with learning disabilities and autism from diverse backgrounds, which can enlighten healthcare workforce and pave the way for informed, culturally sensitive, and responsive patient care.

Within the complexity of our healthcare system, social care professionals can be real pillars of support and guidance. They offer not only their expertise but also empathetic assistance to individuals and their families. Navigating some of the  bureaucracy of healthcare systems can be daunting, but social care professionals can guide and provide reassurance through healthcare services.

Most significantly, the ability of social care professionals to provide emotional support and guidance to individuals and their families, helping them navigate the complex healthcare system is crucial.

From our research, we believe that the following recommendations would help promote equity of access:

  1. Government Initiatives: The government should implement policies and initiatives that promote diversity and inclusion in healthcare, including funding for research on healthcare disparities among ethnic minorities with learning disabilities and autism.
  2. Cultural Competence Training: Healthcare professionals should receive mandatory training on cultural competence to improve communication and understanding with patients from diverse backgrounds.
  3. Community Engagement: Healthcare organisations should engage with ethnic minority communities to better understand their needs and preferences, facilitating the development of tailored healthcare services.
  4. Research and Data Collection: More research is needed to understand the unique healthcare needs of ethnic minorities with learning disabilities and autism. Data collection should include ethnicity and disability status to identify disparities accurately.
  5. Awareness Campaigns: Wider society should be engaged through public awareness campaigns to promote acceptance and understanding of individuals with learning disabilities and autism from all ethnic backgrounds.

Addressing healthcare disparities among ethnic minorities with learning disabilities and autism in the UK is essential for achieving equity in healthcare services. Research has shown that barriers related to language, culture, and healthcare practices continue to hinder proper access to services, leading to adverse outcomes. Social care professionals play a pivotal role in advocating for their clients and bridging the gap between communities and healthcare providers. To promote equity of access, the government, healthcare sector, and wider society must work collaboratively to break down barriers, foster cultural competence, and ensure that every individual receives the healthcare they deserve, regardless of their ethnic background or disability.

References

  1. ‘Mencap’s Treat Me Well Campaign Report (2019)’. This report provides insights into the healthcare experiences of people with learning disabilities, including those from ethnic minority backgrounds, in the UK. Mencap. (2019). Treat Me Well: A Report into the Healthcare of People with Learning Disabilities.

 

  1. ‘Equality and Human Rights Commission (EHRC) Report (2018)’. EHRC conducted research into the experiences of people with mental health conditions, learning disabilities, and autism in the criminal justice system and healthcare settings. Equality and Human Rights Commission. (2018). Being Disabled in Britain: A Journey Less Equal.

 

  1. ‘NHS England’s Learning Disability Mortality Review Programme (LeDeR)’ Reports. These reports analyse the mortality rates of people with learning disabilities, including disparities based on ethnicity. NHS England. (Various years). Learning Disabilities Mortality Review Programme (LeDeR).

 

  1. – ‘We deserve better: Ethnic minorities with a learning disability and access to healthcare’ (2023) report by the University of Central Lancashire, in collaboration with Manchester Metropolitan University, Learning Disability England and the Race Equality Foundation. Supported by NHS England.

Kirsty

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