Pictured above (L to R): Dr Daniel McCloskey (Team Margot), Jacob Knox-Hooke (Race Against Blood Cancer), Yaser Martini (Team Margot), Alan Prosser (Director of the Welsh Blood Service), Chris Harvey (Head of the Welsh Bone Marrow Registry), Orin Lewis OBE (ACLT), Deborah Pritchard (Head of Transplantation Services).

note: The charity, Team Margot Foundation was wound down in December 2024, however Dr Daniel McCloskey & I continue to be advocates for donation and continue to actively campaign, much as we first began, simply as ‘Team Margot’.

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Last month, Daniel and I attended a National BAME Transplant Alliance (NBTA) meeting with the Welsh Bone Marrow Donor Registry (WBMDR) – please see the ‘about’ section below. 

I have long felt that UK plc owes a lot to the Welsh for their independent thinking and approach. A good example of this is how Wales led the way regarding UK organ donation, introducing the Human Transplantation Act (Wales) 2013. The rest of the UK subsequently followed their lead.

Team Margot last met the WBMDR team prior to the publication of the “Where are our nation’s donors?” report, in late 2023. At the time, Alan Prosser, Director of the Welsh Blood Service told us that the All-Party Parliamentary Group (APPG) inquiry had asked all the right questions and explained that it had come at the right time for them; the APPG report provided a superb basis upon which to build their new strategic direction, following the introduction of buccal swabs in Wales.

So we were curious to learn what had since changed.

Prior to 2021, WBMDR recruited stem cell donors via blood donation only. This meant that the team could only focus on recruiting from the cohort of blood donors, amounting to just 3% of the Welsh population. The introduction of buccal swabs meant that WBMDR could recruit stem cell donors from the other 97% of the population too, providing an enormous opportunity for change.

Alan Prosser reiterated what he had told us 18 months previously and he and the team talked us through their thinking and how they adopted a fresh approach to every facet of their work, to form their new strategic direction.

It might sound daft, but it was really refreshing to hear that there is clear governance and accountability in place; the Welsh Blood Service has responsibility for the supply and use of both blood and stem cell donations and the health minister in Wales has responsibility for ensuring effective delivery and reducing health inequalities facing patients. Unfortunately, the same cannot be said for the current arrangements in England – hence the headline recommendation that was made in the “Where are our nation’s donors?” report calling for improved governance and accountability.

It was explained how the new strategic direction adopted by the team in Wales is entirely data centric and they explained how data informs their approach e.g. with their decision to recruit volunteers from ethnic minorities aged between 16-45.

The Welsh approach to stem cell recruitment means that they take a ‘pop up’ approach, physically going to the places where the people are that they are seeking to recruit. Whilst they accept that this loses efficiency, the trade-off means that they are right in the heart of communities. This approach has already been reflected in the results achieved with an annual recruitment total of over 5,500 donors against an annual target of 4,000 donors and an increase of minority ethnic donors to around 18% of the total recruitment.

According to the most recent UK stats, WBMDR currently makes up only 3% of the total number of potential donors on the UK Registry, however when you consider the Welsh registry volunteers as a proportion of the Welsh population, WBMDR is notably more effective that the other UK registries.

What Wales demonstrates is that with the right leadership, commitment to data, and real community engagement, change is possible. 

We can’t help feel that the rest of the UK must now catch up. In England, where the majority of the UK population lives, there is a corresponding  lack of equivalent strategic clarity and accountability.

And that’s costing lives.

Team Margot
Together, saving lives

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ABOUT NHS Wales and WBMDR

National Health Service (NHS) in Wales is devolved, meaning responsibility for its operation and funding lies with the Welsh Government, separate from the NHS in England. The Welsh Bone Marrow Donor Registry (WBMDR) is part of the Welsh Blood Service (WBS) and was formed in 1988; it has a Human Tissue Act licence, is World Marrow Donor Association (WMDA) certified and JACIE accreditation (Joint Accreditation Committee ISCT-Europe & EBMT) is currently pending. 

WBMDR has a multi disciplinary team of doctors, nurses, scientists and co-ordinators, enjoying support from other NHS Trust departments. It operates on a cost recovery basis and can stake a claim to being the most sustainable domestic registry in the UK. 

WBMDR provides a complete registry service for Wales. If a volunteer on the Welsh Registry is selected as a match, the Registry performs the medical assessment, consents the donor and collects the stem cells. It exports stem cells from donors on the WBMDR for international & UK patients  and imports stem cells & cord blood for patients transplanted in Wales.

There are Currently over 75,000 volunteers on the registry, made up from blood donors and now swab recruits (introduced 2021, postal only until Dec 2023).

Jan 2024 : swab recruitment introduced at schools/colleges/universities in Wales 

WBMDR recruits 16-30 year olds and 16-45 for volunteers from ethnic minorities (Feb 2024).

During the year (ending March) 2024/25 – WBMDR recruited 5,757, with increased volunteers from ethnic minorities.

Yaser

Husband to Vicki and father to Oscar (2007), Rufus (2008), Digby (2015), Humphrey (2017) & Margot (2012-2014)