The estimated population of England now stands at 53 million with an estimated black population above 1.1 million. Whereas, there is a huge concern as raised today 21st November 2017 at an event hosted at Bradford Blood Donor Centre and under the leadership of Mr. Ian Trenholm, Chief Executive for NHS Blood and Transplant, who through their communications Manager invited ASYABI to this event in which interviews were to be given to BBC and other media (Press). The Association of Sickle Cell sufferers of Yorkshire and Africans and Basic Information also known as ‘ASYABI’ was represented by its founder, Mr. Olivier Mmounda A Nyam, who on behalf of this patient group based in Leeds is working in the voluntary capacity (no paid) through his role of Chair & Project Manager and he lives with sickle cell. Mr. Ian Trenholm, CEO of the NHS Blood and Transplant, has donated his own blood as a way to call forward more donors.
The NHS Blood and Transplant took this opportunity and via his Chief Executive to raise a concern on the ground that despite that there are 15,000 patients with Sickle Cell Disease (SCD) with more than 240,000 of carriers of the sickle cell gene in the UK, but only 10,000 black people in England are donating their blood to save lives and added that ‘even patients with sickle cell disease who are transfused in the regular basis do not turn up to such events in which volunteer’s donors could see them and they could appeal for more donors from the black communities in England’. As put to him and also to BBC News through the interview given by Mr. Mmounda, ASYABI’s founder who attended this event on behalf of those affected by sickle cell in the Yorkshire to support this campaign. The issue raised by the NHS Blood and Transplant on fewer black individuals who are donating their blood is more complex because according to ASYABI’s research for about nine (9) years now in the field of sickle cell disease or anaemia (SCD) in the UK, less than 300 patients and families across the UK take part directly to sickle cell awareness events such as conferences, seminars, etc. because most patients do not want to present themselves as suffering from this genetic and not contagious condition including the large number of parents who are shameful to speak out on the condition of their kids to their own extended families.
For instance: a well known stigma in Africa based on the current ongoing death of thousands of kids with sickle cell each year and before the age of 5 associated to malaria’s complications had promoted for decades in that continent that huge stigma that “he/she will die tomorrow or before the age of 18 because of his/her sickle cell condition”. Mr. Mmounda did a testimony on his own experience as a patient in Africa where he was born and grew up prior going to France in 2003 where he had some surgeries (operations) of hips’ replacement linked to the complications of his sickle cell in Cameroon where such medical’s operations would be fatal and has had a reviewed surgery in the UK (Leeds) in February 2017 in which he was fearing for his life as such operations are very complex.
Only in Leeds there are 95 patients (adults) with sickle cell, but less than 3 out 40 are keen to attend events on their own cause. Most patient with this condition and through their parents carried this stigma for decades from Africa to Europe, etc. including Caribbean’s which according to ASYABI’s findings in the UK have the same / similar stigma in which for most parents ‘it is a blessing to see their kids to succeed in life by fulfilling their full potential despite the pains that their affected kids with sickle cell go through from the childhood’. For instance in Africa there is the lack of support groups well funded by Africans’ government who for those in a position of power with kids with the condition sent them abroad for adequate medical follow up.
One of the huge concern according to ASYABI’s findings in the UK is that “public institutions such as the NHS Blood and Transplant only raised such issues to big or advanced charities in the field as for instance for the sickle cell aspect in which more advanced charities are led by those with professional kills as staff members who for most of them are not the front line (inspiring patients / parents) so those advanced charities do not help enough initiatives lead by patient groups such as ASYABI”. There is one kind of competition among us rather than to work together to bring forward and inspire more patients and families to speak out about their condition and social challenges. More details on ASYABI’s findings is available on its main proposal for the UK on the stigma linked to sickle cell can be found on its business plan which led this patient group to become a Registered Charity in July 2012.
ASYABI was set by Mr. Mmounda in June 2008 after his first detention in the UK associated to his failed Asylum claim in which according to his testimony he did not receive any support from any charity in London when he was at that period detained at Colnbrook / Harmondsworth removal detentions centres in London and staffs in these detentions knew nothing about sickle cell and when he was released in June 2008 and came back to Leeds in which due to stress he was admitted to hospital for a sickle cell crisis (pain in the bones) and during his admission, a nurse at the emergency service at Leeds General Infirmary asked him ‘what does sickle cell crisis means?’ That was how he felt that something was needed to be done to increase the awareness and patient group initiatives across the Yorkshire and in the UK. So he started giving talks at colleges that he attended with the help support of some volunteer teachers, churches, community events, etc.
ASYABI is urging more people from the black community in England to go forward and donate blood to please save more lives because most patients with sickle cell disease and thalassaemia rely on regular blood transfusions in England. ASYABI thank all of you from NHS Blood and transplant teams from all level including a big thanks to BBC News for promoting and supporting this campaign for more blood donors.
Photos attached to this article: Mr. Ian Trenholm, CEO NHS Blood and Transplant and Mr. Olivier Mmounda and the Reporter Ali Fortescue from BBC News. See more photos of this campaign on ASYABI’s facebook page: https://www.facebook.com/asyabi.yorkshire or visit: www.asyabi.co.uk
Olivier MM. A. N.