Team Margot campaigns for more people to join the worldwide registers as potential bone marrow/stem cell donors, especially people from ethnic minorities or those with a mixed heritage. In 2013, 14-month-old Margot
Margot had an extremely rare dual lineage Leukaemia with both Acute Lymphoblastic Leukaemia (ALL) & Acute Myeloid Leukaemia (AML). The consultant haematologist told us that he had only seen 3 such cases in 10 years.
Video blogs on the bone marrow donor’s journey, Margot’s transplant video, Team Margot donor registration events, our original appeal video for Margot & much more !
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
I popped in to see my mother earlier today & whilst there, she showed me the local “Reporting Back” newsletter from our constituency MP and Secretary of State for Education, Justine Greening. In particular, she wanted to draw my attention to the photograph on the back page, which was taken at our Parliamentary Reception earlier this year.
It made me reflect on how fortunate we are to have the ongoing support of so many wonderful people that are Team Margot.
We are hugely grateful to have the continued support of Justine Greening, who alongside many other Members of Parliament, supports the work that Team Margot does to encourage more people to join the bone marrow registers. There’s so much work to do ! and politicians aside, we are also very pleased to have good relationships with Anthony Nolan, DKMS, NHS Blood and Transplant, The Welsh Bone Marrow Donor Registry, ACLT, World Marrow Donor Day (please see their ‘after movie’ below) and Match4Lara, amongst others.
Not to mention all the fantastic people – YOU – who have joined the registers and those who continue to quietly (and sometimes not so quietly !) follow & support Team Margot and our “Giving to help others” message. Because of your help and support, statistically every week for the next 10 years a patient in need of a bone marrow transplant will now find their matching donor.
We are all united in a common cause in the fight against blood cancer & it’s fantastic to have your support and to be working with you.
Together, saving lives