Only 1% of BAME Londoners on the organ donor register

According to NHS figures, 62% of Londoners waiting for an organ transplant are either Black or Asian.

Many people from Black, Asian and Minority Ethnic (BAME) communities are more likely to develop conditions such as high blood pressure and diabetes which means they’re more likely to need an organ transplant.

Today, the London Assembly Health Committee publishes a survey looking at attitudes towards organ donation within the BAME community. Of BAME Londoners surveyed, it found:

  • 42% are not willing to donate with many citing cultural or religious reasons.
  • 1% said they are on the organ donor register
  • Bangladeshis and Black Africans are the least unwilling demographic to donate

London’s ethnic minority communities face stark health inequalities when it comes to organ donation. Patients from ethnic minority backgrounds can often wait much longer than white patients to receive vital organ transplants, pitting them against unfair survival odds. National data for 2017-18 illustrates those odds.

Familial consent In London, when a deceased person was eligible to donate organs, 66 per cent of White families consented to donation compared to only 45 per cent of ethnic minority families.5 Under the current donation system, families must consent before a deceased person’s organs are donated. Even if the deceased person was on the organ donor register and had a donor card, their family can override the decision after death. The NHS says that family refusal continues to be the biggest obstacle to organ donation. This is unlikely to change without concerted effort, even with proposed changes to the organ donation system.

The Deemed Consent Bill, currently making its way through Parliament, will introduce a system of presumed consent. This means that, unless the deceased has explicitly opted out of the donor register, their consent to organ donation is assumed. Concerns have been raised about the new system. Among other things, some fear that it may encourage more people to explicitly opt-out of the register, and that the trust between doctors and patients’ families could break down if families’ objections are ignored.

However, it is important to note that, under the current system, people can opt-out, but relatively few do.6 Most people that become deceased donors now are not on the organ donation register when they pass away. Their families, consenting on their behalf, make the choice to donate.

Furthermore, under the current system, even when there is explicit consent from the deceased, where families object, donation does not go ahead.7 Nurses and doctors still defer to families to make the ultimate decision. This suggests that, even in an opt-out system, if families raise strong objections, nurses and doctors are unlikely to proceed. So, it is back to the issue of familial consent, and the question of how to help everyone involved understand and be more comfortable with organ donation.

In order to raise awareness of organ donation within BAME communities, the Health Committee will host the BAME Organ Donor Gala tonight at City Hall.

This special event will feature musical and poetic performances as well as touching stories from living donors, donor recipients and families of deceased donors.

Guests & performers attending include:

  • Levi Roots, Businessman & #BAMEdonor supporter
  • Richard Blackwood, Actor & Comedian
  • AJ Odudu, TV Presenter
  • Tessa Sanderson CBE, Olympic Gold medallist
  • Armstrong Martins, X Factor 2018 finalist
  • B Positive Choir, Britain’s Got Talent 2018 finalists
  • Lonyo, Actor and musician who had a double kidney transplant
  • Orin Lews OBE, Co-founder of the African & Caribbean Leukaemia Trust (ACLT)

The event will take place on Monday 18 January 2019 at 7pm in London’s Living Room, City Hall (The Queen’s Walk, London SE1).

Follow us @LondonAssembly and take part in the meeting discussion using #BAMEDonor.

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