Hairdressers in the UK have been trained to chat to clients about organ donation, helping bring about a record number of BAME organ transplants. With minority groups least likely to have a Covid vaccine, what can be learned from the initiative to increase uptake?
The UK’s coronavirus vaccine programme might be considered a success so far, but behind the speedy rollout is a concerning reluctance to have the jab among black, Asian and minority ethnic (BAME) communities.
The government has hinted that there will be more collaboration with faith groups and community leaders in the coming weeks to boost uptake. Prof Gurch Randhawa, a public health expert at Bedfordshire University, says liaising with “trusted messengers” is essential in getting BAME communities on board and should have been done sooner. “These groups are well placed to build confidence with the COVID-19 vaccine,” he explains.
Proof, were it needed, is such community members’ work promoting organ donation, which has helped bring about a record number of lifesaving organ transplants for people of BAME backgrounds.
Hairdresser Ireena Mwanza is one such trusted messenger. Inside her monochrome, silver-gilded hair and beauty salon in Romford, Essex, she chats to her clients about “everything”.
“We discuss men, dating, business, married life, single parenting – and organ donation,” she says. The latter is a recent addition in Mwanza’s 19 years as a hairdresser, after she signed up to a project run by the charity Action on Blood. Called Hair2Debate, it trains hairdressers and barbers in black salons in London and Essex to start these vital conversations.
Former investment banker Abiola Okubanjo set up Action on Blood in 2016. Originally, it was to organise blood donation in north-east Nigeria in response to a humanitarian emergency caused by the Islamist Boko Haram militants’ insurgency. When she returned home to London, she continued the charity to boost awareness of all types of donation among local black communities.
The idea of using hairdressers as envoys for her mission came naturally. “Getting your hair done can be a whole day event, and hair salons and barbershops are really lively places – a lot happens there,” Okubanjo says. “But you hear a lot of misinformation there too. And since the hairdressers often have authority in that situation, I thought they should know all the facts, so they can start conversations about organ donation, or nip into other conversations when the topic of organ donation comes up.”
There has long been a crisis of supply and demand in organ donation for people from BAME communities. They are disproportionately affected by conditions such as diabetes, which can require organ transplants, and there is a shortage of BAME donors.
Why? Research suggests it is complex: a historic mistrust of the government and NHS; a fear of medical exploitation along class and ethnic lines among some groups; a perception that certain religions do not permit organ donation (although none of the major religions object to it).
As a result, BAME patients tend to face lower chances of finding suitable donors and longer waiting times. But in 2019-20, the highest-ever number of BAME patients in the UK received the lifesaving organ transplants they needed – 1,187 people, according to NHS Blood and Transplant (NHSBT). The number of BAME people donating organs after death has also increased, from 67 in 2015-16 to 112 in 2019-20.
While there’s “no single intervention” behind this limited but promising development, says Prof Randhawa, the awareness-raising work of community groups and faith-based organisations has been key.
We discuss men, dating, business, married life, single parenting – and organ donation
This community work has been boosted by government funding allocated by NHSBT to promote England’s move to an opt-out organ donation system in May 2020, similar to that in Wales. The law change means that unless someone registers a decision not to donate organs after their death, consent is presumed (although a dead person’s family’s approval is still requested after their death).
Churches, temples, gurdwaras and mosques have hosted events to discuss the issue with their worshippers and dispel myths. Fears about having their DNA tampered with or sent to the police – or even cloned – have been raised in the past. Another myth circulating in the African-Caribbean community is that if you’re signed up as a donor and are involved in an accident, medics won’t try as hard to save you.
Ads about organ donation have been broadcast in Urdu on local radio stations, while information about the opt-out law change has been shared in Punjabi-subtitled videos on social media. Imams in north-east England have hosted events, where medics answer questions about organ donation and Muslim scholars discuss why it can be considered halal. Hindu and Sikh organisations have used the concept of Sewa – a Sanskrit word referring to selfless service in both religions – to deliver the message, using the hashtag #OrganSewa.
Meanwhile, Action on Blood has also partnered with Yinyinola, a care home provider for elderly BAME people. They have made booklets for carers to give to community elders as a prompt to discuss end-of-life wishes with family – since not knowing a loved one’s wishes is one of the main reasons bereaved relatives refuse to donate their organs.
This approach has been successful, Randhawa suggests, because it tackles the biggest barrier to people becoming donors: lack of trust. “People need to trust the message, and the messenger,” he says. “The message needs to be culturally competent, and come from trusted people.”
Another factor behind improved transplant rates has been a change to NHSBT’s kidney offering scheme, says Lisa Mumford, head of organ donation and transplantation studies there. Since September 2019, higher priority has been given to “difficult to match” patients – with rare tissue types or blood groups – who tend to be BAME patients.
The change was needed, Mumford says, to make the system fairer and reduce the length of time people wait for a transplant – people such as Fez Awan. The 34-year-old from Blackburn, Lancashire, who was born with renal failure, had to wait eight years for his third kidney transplant in July 2020 while undergoing dialysis for most of that time. On average, a white person will only wait a year and a half for a kidney.
“Living through that has made me want to raise awareness and educate BAME people,” he says. Randhawa points out that the increase in BAME organ donation isn’t a straightforward success story: a stark imbalance between donors and patients in need of transplants remains.
People need to trust the message, and the messenger. The message needs to be culturally competent, and come from trusted people
In the financial year 2019-20, 32 per cent of people on the transplant waiting list were from BAME groups, but only 7 per cent of deceased donors came from these communities. Besides, almost 75 per cent of people opting out of the new system have been from BAME, mostly Asian, backgrounds. The disproportionate impact of Covid-19 on BAME communities is likely to be a reason for this, Randhawa suggests, with “trust in the government at an all-time low”.
The pandemic has already caused a sharp fall in all deceased organ donation. What can be done? Randhawa urges the government to collaborate with the same trusted BAME community groups that are working to improve organ donation rates as part of their Covid-19 strategy.
As for Mwanza, much as she misses “the exciting personalities and everyone chatting together” of pre-Covid times, she plans to continue talking about organ donation over braids and colour treatments when the salon reopens. “I’ve definitely changed minds. Even just with the Action on Blood posters on the wall and me saying that I believe in organ donation, some of my clients have come round.”
Because for her it’s personal: a friend’s father died in September 2020, after waiting three years for an organ transplant. “By the time he got it, his body collapsed and rejected it,” she says. “Some black people are unsure about organ donation, but I say to them: ‘If your life was at risk, wouldn’t you want someone to save you?’”
In focus: Surinder – the kidney donor on a mission to change attitudes
“Around Christmas 2018, I was scrolling through Facebook to avoid a university assignment when I saw a kidney donor appeal for a two-year-old girl, Anaya Kandola. I emailed the nearest hospital with a donor site to ask to be tested. It was where I worked at the time – I’m a radiographer.
I couldn’t believe it when I found out I was a one-in-100,000 match. I was determined to go ahead with the procedure: I have two daughters myself and I’d want someone to help if it was my child. The operation went well, the transplant was a success, and at Diwali 2019 I first met Anaya and her family. It’s amazing to see her alive and well. Her parents had been told that if she hadn’t found a kidney donor within the next month she wouldn’t have survived as her blood pressure wasn’t coping with dialysis.
People tell me they couldn’t do what I’ve done, but I try to encourage them to consider donating their organs after death. There are barriers to organ donation in the Sikh community: there’s a mentality that if you give an organ away, you’ll come back without it in the next life. I’ve given a talk about what I’ve done at the temple I go to with my family – I want to do everything I can to get the message out.”