Cultural taboos tackled to increase organ donation

A pioneering science project in Newcastle is tackling cultural taboos to address the country’s chronic shortage of organ donations from black communities.

Only one per cent of black people in Britain are signed up to the NHS Donor Register – but, due to increased rates of diabetes and high blood pressure, they are three to four times more likely than the general population to need a kidney transplant.

And those on the growing waiting list need to find a donor from their own ethnicity if they are to stand a real chance of a successful transplant. Donated organs need to be carefully matched to the recipient to ensure blood and tissue groups are compatible and a match is more likely to be found within the patient’s same ethnic group.

But cultural taboos, myths, misconceptions and misunderstandings surrounding the issue of organ donation have until now deterred many from joining the register to offer the ‘gift of life’ after their own death to others in their community.

Now, in the first project of its kind in the country, Newcastle Science City’s Community Engagement Team has helped a group of residents to begin to save lives by raising awareness and educating their communities about the facts of organ donation and encouraging sign up to the NHS Organ Donor Register.

The Newcastle Science City team worked with the Tyne and Wear Eritrean Community Association, translators and the NHS Blood and Transplant team to design workshops specifically aimed at breaking down cultural barriers surrounding the issue.

Spokesman for the Tyne and Wear Eritrean Community Association, Sirak Hagos, said: “We come from countries where there are lots of taboos and misconceptions about organ donations. But these are not based in religion – they are cultural issues coming from a lack of education and we are lucky that we can change this.”

Awareness raising sessions have so far been held within five communities across the city and have been attended by 130 people. More than 50 percent of attendees said they would seriously consider joining the register after taking part and a second phase of the project is due to be launched to secure signatures.

Sirak added: “When we first introduced the subject people were quite apprehensive. Some had never even heard of the term ‘organ donation’ and we even had trouble translating it. Many people did not even know it was scientifically possible.

“Others had very real experiences of living in countries where there was a threat of organs being sold and traded. We had a huge job in these cases to convince them that this country is different. Now they understand that we all have the opportunity to save lives and we are very grateful to Newcastle Science City for the chance to break down these barriers.”

The idea to tackle the problem occurred to Sirak during a community event hosted by Newcastle Science City. The supply teacher and PHD student, who came to Britain from Eritrea in 1999, floated the idea to apply for funding for community science projects to others in his community and was overwhelmed by the positive reaction – especially from one friend who had personal experience of someone close to him having needed a transplant in the past.

Newcastle Science City community engagement officer Nick Powell said: “This is a perfect example of how we are using science and knowledge to benefit a community and its potential to do good is phenomenal.

“Historically health providers have struggled to engage with the BME population but these specially designed sessions are overcoming communication and cultural issues. We are now considering how this model can be used to broach other cultural issues with health implications.”

Lynn Robson a Specialist Nurse in Organ Donation working as part of the NHS Blood and Transplant northern team said the project has made a significant breakthrough in wider healthcare provision within Newcastle’s black population.

She said: “Many of those attending the sessions were not aware of their increased risk of diabetes, hypertension and high blood pressure and we have used the opportunity to discuss these issues. As a direct result many of those attending have since been to see their GP to get checked out which is a brilliant result.”