Addressing healthcare inequalities faced by British ethnic minorities

Last year over 430 patients in the UK died waiting for a life-saving transplant while another 730 were taken off the waiting list after they were deemed too sick to undergo the procedure. The latest data from the NHS reveal more than 1,100 families declined to donate organs of their deceased loved ones last year. Of these 781 families cited, amongst other reasons, unfavourable religious and cultural beliefs for their refusal. Having spent years researching attitudes towards organ donation in the UK and around the world and through my research as a Churchill Fellow, I am certain a significant number of them are likely to be from black and Asian backgrounds.

The pandemic seriously hampered transplant activity in the last three years and the latest numbers may still not reflect the real changes in organ donation practices after England adopted the Opt-out system in 2020. Even accounting for the temporary distortion in data caused by Covid, the deceased organ donation consent rate amongst minority communities remains worryingly low.

A new All-Party Parliamentary Group (APPG) has now taken it upon itself to address the issue. Formed on the back of a relentless campaign run by Team Margot Foundation the APPG aims to understand why patients from mixed and ethnic backgrounds face healthcare inequalities in transplant and transfusion and to propose concrete policy measures that will ensure everyone has equitable access to treatment irrespective of their ethnicity.

The cross-party committee is currently collecting evidence from a range of stakeholders including patients, donor families, clinicians, grassroots organisations, public health experts, transplant surgeons and community leaders. As a member of the Steering Group advising the APPG, I was recently invited to share the findings of my Churchill Fellowship from my research travels to Israel, India, the US and Qatar.

In 2016, I visited these countries to research how they were making efforts to dismantle cultural and religious barriers to organ donation in their native populations, which are ethnically similar to the UK’s minority communities. My research findings included recommendations on how the UK could adopt some on the methods used successfully in other countries to increase organ donation rates.

The evidence presented to the inquiry thus far has been compelling and underlines the urgency to address the deadly gap in health outcomes for those from diverse backgrounds. It has included deeply personal stories of hope, grief and heartbreak from patients, donor families and healthcare providers. Minority communities now make up 18% of the UK’s population, which translates to 34.5% of pupils in the country’s primary and secondary schools. In the APPG chair Sarah Olney MP’s own words "the NHS is not prepared for this diversity."

I asked Dr. Gurch Randhawa, a professor of Diversity in Public Health at the University of Bedfordshire and one of the leading voices in the country advocating for equitable healthcare for minorities, for his thoughts on the inquiry. Could the scrutiny of the issue at the highest level possible bring meaningful changes, I asked. He seemed hopeful.

“I hope that the inquiry will enable the government to take a systemic approach to tackle the challenge of disproportionate demand for organ donation and transplantation among minority ethnic communities,” he told me.

“We must focus on both the short-term need to increase organ donation by normalising the visibility of organ donors in society as well as the long-term need to take a preventative approach to reduce organ failure rates,” Dr Randhawa said.

The APPG is expected to submit its findings and recommendations by the end of this year. Its timely inquiry could well be the catalyst for future narratives about minority healthcare with positive headlines.