Urgent call for BAME organ donors

  • 300 adults from the BAME community in east London are waiting for a kidney transplant.
  • Someone from the BAME community will wait twice as long as a white person for an organ donation. 

Tower Hamlets Council in partnership with Kidney Research UK and Barts Health NHS Trust are joining forces to raise awareness of the great need for people from the black, Asian and minority ethnic (BAME) community to register as donors.

The local campaign, delivered by volunteer peer educators, is particularly aimed at the Bangladeshi community and draws attention to the shocking fact that someone from a BAME background will wait twice as long as a white person for a suitable organ donation – if they ever receive one. The lack of donors among the BAME community is leading to an unnecessary loss of lives.

The campaign aims to increase awareness of the risks of kidney disease, the link to diabetes, help residents learn how to manage diabetes properly and engage families in conversations about becoming organ donors.

John Biggs, Mayor of Tower Hamlets said: “We are working in partnership with Kidney Research UK and Barts Health NHS Trust to draw attention to the great need for BAME donors. People may not realise that poorly managed diabetes can often lead to kidney failure so we are urging people to start having these conversations with their family members today.”

There are approximately 18,000 people with diabetes in Tower Hamlets. An Asian person with diabetes is 10 times more likely to have kidney failure compared with a white person with diabetes.

Although many black and Asian patients are able to receive a transplant from a white donor, a tissue-type match from a BAME donor is best as they have a lower likelihood of being rejected but there are not enough tissue-type matches on the donor registration.

The faces of the campaign include Professor Magdi Yaqoob, a consultant in kidney health at Barts Health and Queen Mary University; Dr Ismail Mohamed, a consultant transplant surgeon at the Royal London Hospital; Fartun Dahir, a volunteer and local resident in need of a donor; and Surma Begum, the Hiba Project Coordinator who has two daughters in need of transplants. 

Fartun Dahir shares her story of being diagnosed with kidney failure three years ago: “Before being diagnosed, I was a healthy person with no history of family illness. I’ve been on dialysis for the past three years and I am still waiting for a suitable donor.

“People don’t realise that I have to be on a dialysis machine three times a week, and it takes four hours every time on the machine. I feel completely drained afterwards and quite low.

“It’s hard to enjoy even the simple things in life as I can only have a cup of coffee for the day when I am on fluid restriction. I haven’t seen my family in Saudi Arabia since 2016 as I can’t be away for more than four days.

“Kidney disease has no symptoms so many people don’t even know they have it. I suddenly had headaches and was vomiting for 2-3 weeks when I collapsed. The paramedics checked my blood and realised both of my kidneys had failed, so I was diagnosed with severe kidney failure.

“Donation is so important in our community as there are many people just like me, waiting for a donor on a dialysis machine. If you knew you needed a kidney, would you say no?”

Similar peer educator projects run by Kidney Research UK in west London, Birmingham, Glasgow and Edinburgh resulted in more than 3,000 BAME people signing up to the NHS organ donation register. The peer educator initiative is an evidence-based approach and multi award winning. It is hoped this project can achieve similar results in Tower Hamlets.

For more information and to sign up to be an organ donor visit www.organdonation.nhs.uk/towerhamlets 

To become a volunteer email surmabegum@kidneyresearchuk.org