A complex patchwork of suspicion, ignorance and shame is preventing Black communities in the UK from donating – and having – much needed organ donations.

But while there is deep distrust in institutions of authority and a reluctance to discuss the myths around donation, there are also hundreds of Black living donors registered in the UK and those numbers are thankfully growing.

These issues and the continued work to dispel the cultural and faith-based myths around giving donations in particular, were discussed at a webinar hosted by the charity ACLT earlier this week. Black People: Let’s Talk, Organ Donation was a webinar aimed at finding out what are the issues behind improving the odds of finding matches particularly in donors from the African and Caribbean communities.

organ donations
ACLT founders Beverley De-Gale OBE and Orin Lewis OBE

ACLT founders Beverley De-Gale OBE and Orin Lewis OBE were joined by clinicians, members of the clergy and prominent personalities who had received and are in need of donated organs.

Due to an extreme shortage of potential African and Caribbean donors, BBC 1Xtra Presenter and Podcaster DJ Ace – himself in need of a kidney transplant – spoke of the irony that Black and Asian communities have an across-the-board mistrust of authority including the police, Central Government and the NHS.  Yet, he lamented that it is because of that mistrust these communities are worse off when it comes to treating non-communicable diseases like diabetes and it is worse with regard to the need for organ donations due to renal failure.

“I’ve been on dialysis for three years and I’m in a section where it’s just me and a few Asian people and I’m seeing white patients come in for a few months, and then they come in and they have their dialysis and then they are gone [because] they’re getting transplants. They’re in and out.  Whereas we’ve been here looking at each other for three years and that’s sad.” he said.

Radio Presenter DJ Mr. P agreed and went even further.  He believes the hesitance to address these issues is not relegated to Africans or West Indians or even men specifically.  He believes cultural taboos are at the root of the wider communities’ ability to speak frankly about the topic.

organ donations
BBC 1Xtra Presenter and Podcaster DJ Ace needs a kidney transplant

“I think it’s a cultural thing and there are certain conditions or diseases that are in our community that are taboo and that we don’t want to talk about.  Mental health is a huge one.  What we are dealing with re organ donation has an impact psychologically.  You have one condition which has a knock-on effect on another condition.  This conversation needs to happen far more often and on far more platforms.  It’s not a problem that we should be looking to other people to solve and we have to deal with it”, he said.

During the webinar, Consultant Transplant and Organ Retrieval Surgeon Mike Stephens provided context and clarity around how organs are retrieved, and the degree of respect and sensitivity shown to the deceased.  He was at pains to dispel the myth that families are rushed into donating the organs of those who have passed tragically and suddenly, and that the operating theatre is often adorned with their favourite music and photos and other memorabilia – depending on theirs and their family’s wishes.

“When we’ve got ourselves set up in theatre and the organ donor is brought in, the first thing that we’ll do once we’ve got our checks sorted is [we] have something called a moment of honour.  It is a brief pause; a reflection; a thanks to the donor and their family for allowing this process to continue. For allowing life to continue. This isn’t something that you get used to as a surgeon”, he said.

The question of faith was vigorously discussed by the panel as De-Gale pointed out that many are fearful, they will not gain safe passage to the afterlife if their bodies are not “whole” after they pass (due to having donated organs).

President of the Adventist Church in UK and Ireland Pastor Ian Sweeney admitted that discussing death with families of the dying or the bereaved is always hard.  But the best thing we can do is prepare ourselves for death; [by] having uncomfortable conversations, making wills and to educate each other within the family.  He believes family influence can be even stronger than faith, especially because hesitance and mistrust in the Black community is also linked to issues of providing consent.

While pastor Sweeney made it clear that organ donations is not seen as something that is anti-faith, Founder Gift of Living Kidney Donation (GOLD) Dela Idowu suggested people look at organ donation in the same context of ‘giving’ encouraged by organized religion.  She added that despite historical reticence to discuss or participate in living organ donation, there are more than 500 Black living donors in the UK.

The number of people from Black and Asian backgrounds who have received life-saving organs has hit record levels since the law was enacted; but there is still a stark difference between them and their white counterparts where donating and those in need of a life-saving transplant are concerned.

ACLT remains committed to providing hope to patients living with blood cancer and illnesses where a matched donor (stem cell, blood or organ) is required to save a life. Further outreach is planned for early June 2021.

Watch a recording of Black People: Let’s Talk, Organ Donations on YouTube below:

This article was written by Katrina Marshall

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