Yesterday, Margot’s auntie Nadia and I attended our first NBTA meeting, at the Department of Health.
NBTA is The National Black, Asian and Minority Ethnic Transplant Alliance, a forum of organisations set up by the Department of Health, who work together on behalf of Black, Asian and Minority Ethnic (BAME) patients and communities. NBTA aims to address the disproportionality in stem cell, blood and organ donation through raising awareness of inequalities, promoting the importance of transplantation, with the aim of increasing the number of BAME donor registrations and consent to transplantation.
The meeting was attended by officials from the Department of Health, NHS Blood and Transplant, transplant physicians, faith groups and people who are working in the Black, Asian & ethnic minority communities that are underrepresented on the various transplant registers.
The primary reason for meeting was to discuss the NBTA response to the Living Donation Initiative – a NHSBT funded initiative to encourage living organ donation amongst families in the BAME communities.
It gave us a fascinating insight as to what happens behind the scenes and also where we might contribute. Here’s one very quick & easy way:
HOW YOU CAN HELP
One of the very simple follow up actions Nadia and I came away with relates to the Organ Donor Register.
We learned that the Organ Donor Register doesn’t have all the basic details they need to communicate efficiently with those on the Organ register. If you are already on the Organ Donor Register, NHS Blood and Transplant will have your postal address but until about 18 months ago they didn’t record email addresses. This is a barrier to communication because it’s too expensive to write to people by post so there is a basic need for email addresses.
The need for better communications has arisen following the realisation that around 120 people a year who have pledged to give their organs when they die are having their wishes revoked by their loved ones. That doesn’t just represent 120 people who are denied organs each year, but a multiple of this figure, because each person is able to donate a number of organs following their death.
Margot’s story touches upon organ donation & this is something that I spoke about on LBC Radio earlier this year – to listen to the discussion, please click: https://youtu.be/sX_7X_-m-F4
If you are already on the Organ Donor Register, please update your details here: https://www.organdonation.nhs.uk/register-to-donate/amend-your-details-on-the-register/
It literally takes 2 minutes.
And if you aren’t yet on the Organ Donor Register but would like to be, you can sign up here: https://www.organdonation.nhs.uk
Together, saving lives
Previous blog posts about organ donation
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.