LEADING experts and campaigners have stressed the importance of education around organ donation and transplants to mark the start of Organ Donation Week on Monday (2).
NHS Blood and Transplant (NHSBT) said BAME patients are more likely to need an organ transplant than the rest of the population as they are more susceptible to illnesses such as diabetes and hypertension, which could result in organ failure.
However, studies show the number of people from an ethnic background who have signed up to the organ donor register is extremely low. To mark the start of Organ Donation Week next week, Eastern Eye spoke to several experts and campaigners on the importance of awareness within ethnic communities and barriers, which may make people hesitant to sign up as potential donors.
Bobby Mudhar, from Luton, is the founder of The Mandip Mudhar Memorial Foundation, set up in his brother’s memory. The organisation attempts to raise awareness about organ donation in BAME communities. Last year, it received The Queen’s Award for Voluntary Service, the highest award given to local volunteer groups in the UK.
Mudhar’s brother Mandip passed away in 2001. The 20-year-old suffered a fatal head injury after he was involved in a car accident. Sadly, it became evident that Mandip would not recover. The family were approached by a transplant coordinator in the hospital who asked if they would consider organ donation.
“I remember thinking, that’s a tough job coming up to a family and asking those questions,” Mudhar recalled. “But I didn’t dismiss it straight away as I wanted to know more.”
There were several factors which drove the family to consider donation. Mudhar had met other hospital patients who were either waiting for transplants or had undergone surgery to receive a vital organ. He asked if an eye transplant was possible for his brother after they were informed that Mandip had lost permanent sight in one eye.
“It occurred to me that if we were going to a hospital and were waiting for something, then there would be other families in the same situation as us,” he said. “If my brother needed a kidney or a heart, we would have taken it; so if we were in that position, we would ask for it and I’m sure many other families would feel the same way.”
As the family are from a Sikh background, Mudhar spoke to elders from the community on the decision.
The NHS had previously announced that a person’s faith and religious beliefs would be considered when they sign up to be an organ donor. Health bosses said the change would be implemented after it emerged that the main barrier to organ donation among people from south Asian backgrounds is the belief that it is against their culture or religion.
“We wanted to know more as (within the Sikh faith) the body must be washed before it is cremated,” Mudhar said, admitting they were unsure if donation would have an impact on this. He also consulted doctors on the process. It later emerged that Mandip had confided in his sister that he would want his organs donated if anything ever happened to him.
“That made it easier, that those conversations had taken place and I found out more about what (organ donation) entailed,” he recalled. The decision was eventually made to donate Mandip’s organs to those in need.
“I’d do anything for just two minutes more with my brother, so if anyone else got the chance to potentially spend five more years with their loved ones… that time, they wouldn’t have if they weren’t able to get those vital organs,” he said. “It isn’t just about saving someone’s life, it is giving them the opportunity to prolong it.”
Engaging with the Asian community on organ donation means that Mudhar has first-hand experience of people’s perceptions. He said people are understanding of organ donation when they learn more about it.
“I say to people, ‘I can’t think of a reason why we wouldn’t have donated, you can help so many people,’ and I think that resonated with a lot of people,” he said.
Gurch Randhawa, professor of diversity in public health and director of institute for health research at the University of Bedfordshire, has been a prominent figure in backing organ donation.
A recent MadeAtUni campaign, which looks at stories of how universities have improved lives, shortlisted Professor Randhawa’s work on the cause. More than 100 UK universities made submissions. His work focused on increasing organ donation among BAME communities, and the role faith plays in making these decisions. His extensive research with the Organ Donation Taskforce enabled faith leaders to start a dialogue around organ donation with local communities.
As most religious texts were written centuries before organ transplants took place, Randhawa explained that people who have certain religious beliefs don’t want to contravene what they perceive as being really important rituals.
“That it why it is important to work with faith leaders across the UK,” he told Eastern Eye.
He engaged with religious leaders through his Faith Engagement & Organ Donation Action Plan, commissioned by the NHSBT. The plan was published in partnership with faith leaders who co-authored some of the resources based on religion and organ donations. Based on his experiences with local communities, Randhawa said the response was positive.
“Based on our approach, we have this partnership with donor family and community leaders, and if you have that relationship, (people) will listen to you,” he said. “It has to be community led.”
Lord Jitesh Gadhia has also campaigned to raise awareness of donation within ethnic groups.
The peer sponsored the formation of the Jain and Hindu Organ Donation (JHOD) steering group, which has been working in partnership with NHS Blood and Transplant (NHSBT).
“I do appreciate that what happens at the time of death is always a sensitive topic in all cultures,” Lord Gadhia told Eastern Eye. “There is natural human instinct to mentally block-out this subject.
“But I believe that we owe it to ourselves and our families to have these difficult conversations at an early stage. It falls into the same category as writing a will.”
Kirit Modi, chair of JHOD, added that organ donation week provided a “wonderful opportunity” to all Asians in the UK to think about organ donation.
Noting the change of law on organ donation in England, where individuals will be required to opt out of organ donation, which will come into effect in 2020, he said: “I request all Asians to register their decision on organ donation, discuss their decision with family members and to help save lives”.
A spokesperson for NHSBT told Eastern Eye that although many black, Asian, and minority ethnic patients can receive a transplant from a white donor, for many the best match will come from a donor with the same ethnic background.
“That’s why we need more people from these communities to be prepared to donate after death, make their decision known to their family, and provide suitable organs for the hundreds of black and Asian people currently on the waiting list,” the spokesperson said.