Our role during the APPG’s first Parliament

To view and download the 2023 Inquiry report, click here or on the image above. Please read on below for more on the report recommendations.

The All-Party Parliamentary Group (APPG) for Ethnicity Transplantation and Transfusion was first established on 6 December 2022.

Initially, the Group was Chaired by Sarah Olney MP, with the charity, Team Margot Foundation providing secretariat support. Following the announcement of the General Election, the Group ceased to exist on 30 May 2024.

On Monday 14 October 2024, the Group was re-constituted with a new Chair, Bell Ribeiro-Addy MP and a new secretariat in charity NBTA, led by Orin Lewis OBE. Team Margot was delighted to assist in this process and to hand on the baton.

Please click on the links below to access our archive and for more detail on:

• The 2023 Inquiry into ‘diversity, donation and delivery’ and the resultant “Where are our nation’s donors?” inquiry report, published in December 2023

Group activity during 2023 and the first half of 2024

• Group 2023-24 Newsfeed

What follows below is a brief summary of the work of the Ethnicity Transplantation and Transfusion APPG, during its first Parliament. For more on the work of the APPG today, please visit NBTA’s website: https://www.nbta-uk.org.uk/

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The Group focused on tackling the critical issue of donor diversity in the UK, across all forms of donation including organ and stem cell transplantation, as well as blood transfusion.

The Group ran Parliamentary events and acted as a coordinator between key stakeholders, including amongst others NHS Blood and Transplant (NHSBT), Department of Health and Social Care (DHSC), the Department of Education (DoE) as well as key campaigners and many charities that operate within the sector, alongside supportive parliamentary figures.

Notably, the Group ran an inquiry last year, which culminated in the launch of a seminal report in December entitled: “Where are our nation’s donors?”. This report spotlighted the alarming lack of ethnic diversity in the various UK donor pools and the stark inequity that exists when it comes to transplant and transfusion treatments for the UK’s ethnic minority and mixed heritage population.

The report repeatedly recorded that lives are being lost. And that we cannot, morally, ignore this known problem a moment longer.

The “Where are our nation’s donors?” report underscored what has been known for all too many years: that UK’s ethnic minority and mixed heritage 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.

It’s a national scandal.

The “Where are our nation’s donors?” report made key recommendations, including:

A new minister to be appointed for transplant and transfusion health inequalities, with cross departmental responsibility for improving outcomes – improved governance and accountability being essential for progress to be made

Improved data, reporting and transparency – the group’s most startling discovery is how little hard data is available and the lack of progress in getting hold of it. The group made recommendations on how this could be addressed, working with the Race Health Observatory, DHSC and NHSBT

Improved education, awareness and activity – with a review of funding for charities and community campaign groups and wide action to build a culture of donation across the whole UK population

To view or download the Group’s Stakeholder Pamphlet, please click here or on image above

What do we want to come out of our inquiry and the work of the Group ? More donors in general, more donors from mixed heritage and ethnic minority communities in particular, greater visibility of donors within UK society and for our healthcare services to be attuned to the needs of our whole population.

The “Where are our nation’s donors?” report provides a detailed blueprint that outlines all the areas needing urgent attention to effect positive change. This document serves as a guide for future Group initiatives, ensuring that our collective work continues to inspire and facilitate improvements in donor advocacy and health equality.

The Group met with key stakeholders in the weeks following publication of the report and will follow up again up to ensure progress is being made.

For more detail on the Group’s activity during the last Parliament, please visit: https://www.teammargot.com/2024-group-activity-to-date/