My mum won’t benefit from the blood transfusion rule change, but many will

This week offered a pretty special moment for me. I was sad my mum was not here to witness our success, however. I often think about my mum. We sadly lost her in 2015 at the tender age of 60. It was cruel that she was taken so young. She neither got to see me being elected to the London Assembly nor to parliament, but I know she would be proud, this week especially.

On Monday, the new Health Secretary Sajid Javid parted company from his predecessor by listening to the Black women in parliament – and our friends at Terrence Higgins Trust, National AIDS Trust and One Voice Network – and changing the blood donation rules. A ban that should have been removed in June when the much publicised outdated rules on gay and bisexual men donating blood were finally modernised. A ban that was removed in Scotland and Wales, but not England. A ban that hugely impacted potential Black blood donors, unnecessarily turned Black people away and prevented more from coming forward in the first place.

Based on antiquated HIV science, the rule was a three-month deferral period for anyone with “a partner who has, or you think may have been, sexually active in parts of the world where HIV/AIDS is common” and references “most countries in Africa”. Existing robust screening rules means its deletion will have no impact on the security of the nation’s blood supply. As Javid told the Evening Standard, deleting this question “will not compromise safety”. It will reduce HIV-related stigma and is a win for many more besides.

In fact, the biggest beneficiaries will be sickle cell patients. People like my late mum. People who are Black African, Black Caribbean and of Black mixed ethnicity are more likely to have the rare blood sub-group, such as ‘Ro’, that many Black sickle cell patients need. ‘Need’ being the operative word.

As my mum’s principal carer, I remember time and again how she would have to go for blood transfusions. They were part of her monthly cycle. We would dread the winter months, as the cold weather would exacerbate her sickle condition and mean more frequent treatment. That blood was literally her life support. Often I would hear nurses talking about the need to put out an “urgent call” for more donations. In fact, I received a text of this nature from NHS blood and transplant a week ago last Wednesday. It was a telling reminder about the change we were fighting for.

I remember being with my mum and being thankful to those who had donated, pint after pint. I remember feeling guilty because I was so scared to give blood and when I finally plucked up the courage I was turned away because of insufficient iron. I remember hearing about this antiquated rule for the first time and thinking it just didn’t make sense – both the question and the science behind it. I vowed to do something about it.

Since my election, it has been an honour to partner with Terrence Higgins Trust, National AIDS Trust and One Voice Network on this campaign. To get not one but two scientific bodies to recommend its removal was a great step. To see the scientists ignored in June was a knock-back. But we carried on regardless. I was so proud of my colleague Taiwo Owatemi – a pharmacist by trade – who took up the same cause and worked with me and others to make the Health Secretary listen. Finally it worked.

I hope this change is one less barrier to Black donors coming forward. That more Ro blood can flow into the NHS and patients like my mum. That there will be fewer Black girls fearing the winter and whether there will be enough blood for their mum each Christmas.

Our work is never done. Recently I exchanged emails with Beverley De-Gale OBE, co-founder of African Caribbean Leukaemia Trust (ACLT), discussing their recent drive to promote new donors and the campaign ‘Bonded by Blood: A Mother’s Story’. Just last weekend, I joined the NHS Blood and Transplant and the ACLT to promote new donors at Lambeth Town Hall. The latter are reviving their #BlackBloodChallenge, where they encourage supporters to post their blood donation appointment confirmation to persuade others to go forward. This week has been a real boost to the campaign.

My mum will never benefit, but many like her will. Instead, I dedicate this victory to her, the wonderful Maria Da-Silva.