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The All-Party Parliamentary Group (APPG) for Ethnicity Transplantation and Transfusion (ETT) today published its report “Where are our nation’s donors?”. This follows an inquiry held by the Chair of the APPG – Sarah Olney MP along with Jackie Doyle-Price MP and Rt Hon Mark Tami MP – earlier this year. The inquiry received 54 pieces of written evidence and held two oral evidence sessions with expert witnesses.
The report says that the UK’s mixed heritage and ethnic minority population face a double whammy of inequity as they are more likely to need donors due to conditions which disproportionately affect them, such as sickle cell and kidney disease, but less likely to find well-matched donors on the blood, stem cell and organ donor registers. This is particularly true for patients in need of stem cell transplants for the treatment of blood cancer, where matched tissue type (most often found in donors from a similar ethnic background) is critical to successful outcomes.
Key recommendations include:
Sarah Olney MP (Lib Dem, Richmond Park), Chair of the ETT APPG said:
“This is a very thorough and damning report. There has been over a decade of inaction and our first recommendation is that the Government should urgently appoint a minster to drive progress.”
“We heard that data collection is fragmented, and that it does not capture ethnicity in sufficient detail to facilitate the development of a strategy which would deliver a big enough pool of donors to support those needing transplants and transfusions. This is why we recommend the first task for a new minister should be to establish a unified approach to recording ethnicity and religion, so we have completeness and accuracy of data needed to identify donors, evaluate treatments and save lives.”
“Finally, we need to improve education and awareness around donation in diverse communities. For too long, services and communication have been focussed predominantly on a white audience. With one in five of the UK population now mixed heritage and ethnic minority, rising to one in three of school age children, this has to change.”
Jackie Doyle-Price MP (Conservative, Thurrock) said:
“This report highlights what we have known for a long time – that lower rates of donation in some communities is leading to inequality in outcome for those in need of organs and stem cells. This must be tackled in order to save lives. Ministers need to show leadership to break down the practical and cultural barriers to progress.”
Beverley De-Gale OBE, Co-Founder of ACLT and mother of Daniel De-Gale said:
“In 1996, my six-year-old son, Daniel, was diagnosed with blood cancer. As a person of colour his chances of finding a donor were less than one in 250,000 and he died after a long battle with the disease. This is a very important report because over a quarter of a century has passed since Daniel’s diagnosis and little or nothing has been done to solve the problem.”
Gurch Randhawa, Professor of Diversity in Public Health, University of Bedfordshire said:
“The evidence submitted to the inquiry showed that there are totally unacceptable inequalities for mixed heritage and ethnic minority patients in need of transplant and transfusion treatments, including signs that those organisations responsible for rectifying this situation don’t appear to have a financial strategy which makes proportionate mixed heritage and ethnic minority recruitment viable. Families testified that donors aren’t being found, and donors are invisible in society, which means lives are being lost. Despite these inequalities being known for many years, it was disappointing to learn that so little has been done to address them”.
Yaser Martini, from the charity Team Margot Foundation, said:
“These are serious issues that don’t just affect healthcare; they affect our wider society in our education system, in employment, our national culture and social inclusion. The APPG aims to serve as a catalyst to break down departmental silos and increase political urgency on these critically important issues, ultimately to save and improve more lives.”
Ends.
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For more information on the inquiry, the “Where are our nation’s donors?” report and its recommendations, please contact: Yaser Martini | yaser@teammargot.com | +44 7770 672 559
The report was launched today in the House of Commons. For further information about the launch, photographs or interviews, please contact Yaser Martini
About: Team Margot Foundation (charity no: 1160236) provides secretariat support to the All-Party Parliamentary Group (APPG) for Ethnicity Transplantation and Transfusion (ETT) to raise awareness of health inequalities and to promote policy change to help save and improve more lives through greater ethnic donor participation.
APPG Report Where are our nation’s donors?APPG Report Where are our nation’s donors? Further information can be found on the Team Margot website – www.teammargot.com/appg
The All-Party Parliamentary Group for Ethnicity Transplantation and Transfusion (ETT) Executive members are: Honorary President – The Baroness Benjamin DBE OBE; Chair – Sarah Olney MP (LibDem); Vice Chair – Rt Hon Mark Tami MP (Lab); Officers: Feryal Clark MP (Lab), Fleur Anderson MP (Lab), Jackie Doyle-Price MP (Con), Marsha De Cordova MP (Lab), Sir Peter Bottomley MP (Con).
Husband to Vicki and father to Oscar (2007), Rufus (2008), Digby (2015), Humphrey (2017) & Margot (2012-2014)
Team Margot’s mission
To help save and improve lives by educating, inspiring and motivating people, especially from ethnically diverse communities, to register as blood, organ, stem cell and bone marrow donors and to provide a range of support to families caring for child cancer patients.
Team Margot also provides secretariat support to the All-Party Parliamentary Group for Ethnicity Transplantation and Transfusion.