Blog: Organ donation in BAME communities

Published: 3 Sep 2018

Author: Nishtha Chugh
Blog: Organ donation in BAME communities

Donate, organs, gift, save, life – you are probably going to see these words a lot this week. Between 3 and 9 September, which is Organ Donation Week in the UK, these words will compete for your attention on your endless newsfeeds that update as fast as flight departure boards.

You might feel like ignoring these words. But Fez Awan from Blackburn hopes you will pause and ponder over them. Natasha Tiwari from London will want you to think about what they mean. And Ashley De La Mode from Tottenham strongly wishes the words, and the message they carry, will compel you to have a conversation with your family. Fez, Natasha and Ashley are from BAME communities and face a long, agonising wait on the kidney transplant waiting list. Their lives literally depend on the decision you and I take in death.

In this country, three people die every day while waiting for donated organs. At nearly 66%, the UK has one of the lowest donation rates in the developed world.

For BAME communities, the numbers are even grimmer. According to the latest NHS Blood and Transplant figures released in July 2018, more BAME patients are dying than ever before while waiting for organs like kidney, liver and heart. The consent rate in UK minority communities is less than 44%. This matters because transplant success rates tend to be higher when organs come from the same gene and ethnic pool.

Low organ donation rates in British BAME communities are usually attributed to traditional views based in religions and cultures, but through researching the issue on my Churchill Fellowship, I found that the problem was more complex.

After receiving my Fellowship in 2016, I travelled to India, Qatar, Israel and the USA over a period of 18 months to learn how ethnic communities in these countries were changing their minds about organ donation. From youth engagement to community ownership and reciprocation, each country offered fascinating insights into their efforts towards breaking barriers and saving lives.

Below: people sign up to become organ donors in Qatar

Organ donors in Qatar

But the common denominator in every community I visited was the emphasis on ‘normalising’ conversations about organ donation. Having discussions with family members about ‘death’, an ever-sensitive and highly taboo subject in many cultures across the world, and addressing the beliefs that discourage organ donation, emerged as key factors in eventually tilting the scale.

Recognising the ‘silent crisis’, its cost to our NHS, and the need to have a robust model in place, the UK Government recently announced ambitious plans to adopt ‘opt-out’ or ‘presumed consent’ by 2020. This means everyone will automatically be considered an organ donor unless they choose to opt out.  While the new policy continues to divide academics, clinicians and policy makers, everyone agrees that the success of any model decisively depends on prior conversations with families and normalising organ donation in society, regardless of religious and cultural views.

So the next time you see the words organ, donation, gift, life and save, please take a moment to think about where you stand on the subject of organ donation. Do you need to learn more about it? Is it something you would like to consider? During Organ Donation Week, there will be plenty of resources around to help you make an informed decision.

Supporting organ donation personally, without sharing your views with your family, is still job half done. This week, take the opportunity to have this conversation. It may not be easy to broach the subject, but it is necessary. Family members of a deceased person on the organ donor register can still refuse to donate organs, even once the opt-out law is in place. For people like Fez, Natasha and Ashley, having this conversation with your family could mean the difference between life and death.

Apply for a Fellowship

Read Nishtha’s report