I was recently invited to speak to members of the National BAME Transplant Alliance (NBTA), a coalition of organisations that seeks to promote awareness of blood, organ and stem cell transplant. The NBTA has been around for the best part of a decade, engaging third sector and statutory bodies in the discussion around expanding access to donation-reliant therapies to UK patients of all ethnic backgrounds. It counts amongst its members ACLT, Race Against Blood Cancer, and Team Margot, charities with whom I’ve had the fortune to engage during this project.
The talk, which took place today, was an opportunity present some initial thoughts and emergent findings from Mix and Match. I gave an overview of some the key elements that I’ve seen playing a role in minority ethnicity donor recruitment. I suggested that messages and the organisations and appeals behind them often enrol a combination that flags the would-be donor’s ethnicity, their action as as ethical choice, and do this in a way that emphasises emotion, often through using individual narratives of bereavement.
In particular, I explored how these personal narratives are key to much recruitment work, but that this presents a set of challenges, particularly around ensuring support for people who decide to share their stories. As such, I suggest that we have to understand stem cell donor recruitment work not simply as an “upping numbers” effort, but as something that necessarily – through using narratives as a kind of powerful currency – has to support individual patients who find themselves running appeals. In the UK, charities and stem cell registries are busy doing this multivalent work, and should be supported to do it and acknowledged for it.
Stills from my presentation to the NBTA
The presentation maps on to some of the evidence I provided at the recent APPG, but also links into themes from a paper that is currently under review. As soon as this paper is available, I will ensure it is accessible via this website.
It was really great to share the talk with a range of people and organisations actively involved in this area, both at NHSBT and the Department of Health and Social Care, as well as third-sector organisations. The discussion after the talk demonstrated some of the really strong consonances of the findings of this project in relation to general donation and donor recruitment (be it stem cell, blood or organ), but also to racialised health issues such as vaccine uptake, and participation in research.