Ben Whitelaw | Guardian Professional
Organ donation within BME (black and minority ethnic) communities is becoming a serious public heath issue, as the need for transplants among its members increases. According to NHS Blood and Transplant, 26% of people waiting for an organ transplant are from BME groups, with the majority of those needing a kidney transplant.
However, in March just 0.4% of those on the organ donor register were black and 1.3% were from Asian ethnic groups. With the success of organ transplantation heavily dependent on blood type and with very few type B donors – the predominant blood type of Asian and Afro-Caribbean groups – on the register, the racial mix of donors needs to match demand more closely.
In a recent paper, Gurch Randhawa, professor of diversity in public health and director at the institute of health at the University of Bedfordshire, found that minority ethnic groups are disproportionately affected by demand for transplants compared to the white population as a result of genetic predisposition and increased prevalence of underlying conditions.
His research, published last week by the Race Foundation to coincide with National Transplant Week, also concluded that those in the BME community were prevented from joining the register due to religious and cultural factors that meant they did not think they were permitted to donate. Common fears included thinking that cremation would be delayed and that doctors wouldn't work as hard to cure an illness for someone registered for organ donation.
"Much like other countries which are far more successful than us, we've got to find a way of proactively addressing these concerns with the public," says Dr Randhawa.
He says the key is making sure that people in BME groups are fully informed. That doesn't mean throwing leaflets and DVDs at them either, he says, but speaking to people face to face. Funded by the Department of Health as part of the organ donation task force delivery board, Randhawa has attended events around the country and recently joined religious gatherings in Neasden and Chigwell to talk to Hindu and Sikh communities.
"Where it works best is when you've got the community on their terms in their environment," he says. "If they then want to get faith based advice, it's far better that those people are in the room when you're giving them that information so that they can be part of the dialogue."
This grass roots approach to organ donation has worked elsewhere: in July 2009, Kidney Research UK instigated the Peer Educator programme to raise awareness about all aspects of organ donation, particularly the issue of consent to using organs following death, which is more frequently withheld by people in BME groups.
The programme enlisted seven peer educators from Harrow in Londonto conduct awareness raising sessions about organ donation. Over a two year period, they went out to mela festivals, libraries and places of worship, signing up more than 2,000 people to the organ donation register.
Neerja Jain, a projects development manager at Kidney Research UK, says: "Sometimes concerns were of a religious nature, but some were they were just concerns that Joe Bloggs walking along the street might have. Sometimes it was people who were very open minded but perhaps had never thought about it and never given the opportunity to talk about it."
"Some people didn't want to approach the stall and some events didn't want to have people in." adds Tim Hoyle, public health projects officer for NHS Harrow and health trainer lead on the project. "But then as word of mouth got round and people heard about it, they began to embrace it. What would often happen is that people might not approach the stall the first time, but might do on the second or third. It was a drip feed effect."
In one particular case, having found it difficult to get those from the Muslim population to sign up, a peer educator contacted the Sharia Council for guidance and discovered that a fatwa was issued in late 1990s saying organ donation was allowed and seen as a positive step.
"One time a Muslim woman came to one of the stalls and said 'I'm not allowed to do it'," says Hoyle. "Our peer educator gave her the fatwa, she went away, read it and came back and signed up on the spot. That was the barrier for her. It's just about letting people find a way for themselves."
"I really do think this sort of grass roots approach has a tremendous amount of applicability across a wide range of healthcare," says Prof Anthony Warrens, dean for Education at Barts and The London School of Medicine and Dentistry, who witnessed the prevalence of kidney disease in his former clinical practice in west London and was subsequently supported by Kidney Research UK to undertake research that culminated in the Peer Educator programme. "If you compare the cost of a programme like this with the cost of treating a patient, irrespective of the human benefit of helping that person, the cost to the NHS is an easy one to justify. Our model has been shown to work."
Money for the Peer Educator programme has run out, with new funding being sought to continue the scheme in other areas. "All the evidence shows you, if you want organ donation to become usual you have to make it accessible in everybody's day to day lives," says Dr Randhawa. "You've got to think about what the ways of getting people to talk about it and the only way to do that is to do it via their normal social network."
THE SITUATION IN THE UNITED STATES IS NO DIFFERENT. BLACKS ARE APPROXIMATELY 18 PERCENT OF THE POPULATION HOWEVER REPRESENT OVER 30% OF THE TRANSPLANT WAIT-LIST - THEIR DONOR DESIGNATION RATE IS VERY LOW. FOR MORE INFORMATION ABOUT MINORITY DONATION AND WHAT YOU CAN DO IN THE U.S. PLEASE VISIT MOTTEP.