The scale of the donation crisis in BAME (Black, Asian and Minority Ethnic) communities is growing, despite ongoing activities to arrest it. To find a solution, in February 2018 Labour MP Eleanor Smith launched a review into BAME blood, stem cell and organ donation in England. The review took place over four months and included consulting with NHS Blood and Transplant, charities, community organisations, medical professionals and donors themselves.
Read the full review.
The review has four main findings:
- The role of local, national and international. The work of local organisations is the most effective way of spreading awareness about donation, but they have very little help to sustain or grow their work. The support of national organisations is key in improving and facilitating this. Meanwhile, growing relationships with international organisations is crucial in accessing donations from across the world, and widening knowledge of best practice.
- Normalisation. In cultures that see donation as a normal act, and openly discuss it, donation rates are significantly higher. There are several key ways to begin normalising the idea of being a donor.
- Young people and education. Working with younger people is extremely effective: it is the best way of securing sustainable donations and raising donation rates in the long term. Formalising this within the education system would prevent myths and misinformation spreading, and move the idea of donation from an oddity to something commonplace.
- Race, culture and religion. The importance of understanding, and being sensitive to, the differing perceptions of donation in different races, cultures and religions cannot be understated. This is crucial in effectively planning what will work for each group.
The review delivers a number of recommendations which attempt to solve the declining numbers of BAME donors. They address current structural and cultural barriers and call on individuals, communities, NHS bodies and the Government to act.
The recommendations include:
- A long term government strategy, co-produced with organisations who work in communities, to increase BAME donation rates.
- Cultural competence training for members of the medical workforce who come into contact with potential donors.
- A formalised commissioning process for BAME community organisations, allowing them to access funding to grow and continue their work amongst the hardest-to-reach communities.
- Donation issues and processes to be added to the national curriculum, to ensure younger people have access to accurate information.
- A specific public health campaign targeting BAME communities, which is developed and co-produced by the community itself.
Eleanor Smith MP, Chair of the BAME blood, stem cell and organ donation review said:
“I am proud to have lead this review into donation in the Black, Asian and Ethnic Minority communities. In blood alone it is estimated that we will need 27,000 new donors in 2018/19 from BAME communities just to keep up with the growing demand. I’ve heard from community organisations, medical professionals, charities and donors themselves about the silent crisis BAME communities are facing. This issue needs to be a national priority as this injustice and unfairness can go on no longer. I’m calling on the Government, NHS bodies, communities and individuals to do more by not only highlighting the scale of the problem, but implementing the review’s recommendations immediately so that we can start saving more lives.”
NHS Blood and Transplant have published our Living Transplant Initiatives resources on their website. The videos, leaflets and other materials developed by the projects are available here.
NBTA Co-Chairs, Kirit Mistry and Orin Lewis, met this week with Parliamentary Under Secretary Department of health MP Jackie Doyle -Price. They discussed the issue of how to raise awareness of organ donation in BAME communities.
Jackie Doyle -Price MP said: ”Great to meet with Orin Lewis OBE and Kirit Mistry to plan how to raise awareness of organ donation in black & Asian communities”
NBTA welcomes the announcement of an ‘opt-out’ consultation by the Government.
The focus of the consultation will be on three questions:
- How much say should families have in their deceased relative’s decision to donate their organs?
- When would exemptions to ‘opt-out’ be needed, and what safeguards will be necessary?
- How might a new system affect certain groups depending on age, disability, race or faith?
Orin Lewis, Chief Executive of Afro-Caribbean Leukaemia Trust & Co-Chair of National BAME Transplant Alliance said:
“As a parent of a young man who sadly passed away from Multiple Organ Failure, I gladly welcome the Prime Minister’s decision to instigate a much needed public Consultation on the relative positive and negative merits of England having an Opt Out Donation policy. Looking forward I am expecting a wide spectrum of heated but ultimately constructive views and opinions from key stakeholders across the public domain, with the end goal of ultimately saving many more lives across the wide diversity of patients in England needing an organ transplant.”
The consultation will run until the 6th March 2018.
NBTA members ACLT have launched a campaign called Our Silent Crisis, highlighting the need for organ donations from living people.
In 2016 the waiting list for kidney transplants was made up of 34% Black, Asian or Minority Ethnic (BAME) people. But of all the transplants that took place only 28% were to BAME recipients. The shows the difference between the supply of kidneys and the demand for them.
Across the UK around 5000 people are in need of a kidney and more than 250 people died while waiting during 2016-2017.
The average waiting time for a Black patient needing a kidney is three years. Not only is the number of Black people affected by kidney failure disproportionately high, but the number of Black donors is critically low as well.
Unless ordinary people come forward to become living kidney donors this number will rise, and the number of deaths will too.
- Blood and tissue types are more likely to match in people with the same ethnic background. Matching makes organ transplants possible
- Only 17 people from the Black community donated a kidney in 2016-2017, the lowest figure in 5 years
- Just 189 Black patients received a kidney transplant at the end of 2016-2017, meaning 600 patients are still waiting
Orin Lewis OBE, Co-Founder, Chief Executive of ACLT, said:
“This is a real issue facing our community. Our silent crisis needs to not be silent anymore: More donors of African Caribbean descent need to come forward and help us save lives. Too many people needlessly die waiting while friends, family and colleagues could provide a vital match. We need a game changer soon, if the current trend continues the future looks bleak for our community.”
Nina said ’You don’t need to be brave to be a donor. There’s nothing scary about it. My thing is that could be me. It could be anyone of my nephews, god-children or a family member. I wouldn’t be able to cope knowing that I needed this thing to live and none of you are going to help me.’
Nina’s incredible story can be viewed on YouTube. Please CLICK HERE
To read more about the ACLT living kidney campaign please CLICK HERE