As planned, organised by the Sickle Cell Society in London; the Patient and Carer Educational Seminar took place in London on Saturday 9th March 2013. We have had varieties of talks from scientists in the field, doctors, specialised Nurses, representatives of Department of Health such as a Senior Commissioner who spoke about how money is allocated to specialised centres or hospitals and the new changes within the NHS, which will be implemented by April 2013. According to Commissioners funds for the improvement of service providers for different conditions are prioritised in link to the number of patients. As for patients with Sickle Cell and Thalassaemia in the UK the current govt stats is about 6,500 which is too low than the original statistic known as 15,000 of patients.
In my turn and on behalf of the Association of Sickle Cell sufferers for Africa and Basic Information also known as ‘ASYABI’, which is a registered charity founded by me in Leeds, as I live with sickle beta-thalassaemia, which is similar to sickle cell anaemia; my talk was mainly focused on the stigma worldwide associated to sickle cell to help commissioners and other decision-makers to understand that the challenges that families and patients with sickle cell face are more complex than what they think because they allocate billions of pounds for the care but less funds are given to charities in the field like ASYABI, which on the ground support on the social aspects this group of patients and families affected by sickle cell. Evidence from the ground supported by expert doctors’ haematologists for sickle cell and thalassaemia proves that ‘when patients with this disorder have less stress; the more they are likely to have fewer attacks (sickle cell crisis) resulting to less hospitalisations, which could held the NHS and Department of Health to save millions by only allocating to charities in the field like ASYABI a few thousands of pounds to succeed on that mission’. My talk has highlighted my personal experience which shown deeply how most sufferers of sickle cell grow up within a highest stigma from their childhood with the perception that they are going to die before the age of 18 because as stated in my talk, I personally grew up with that perception because since the discovering of my condition at the age of 5 in Africa, my extended family was putting off my parents on the basis that ‘anyway, Olivier is going to die soon so you do not need to invest any money on him as it is a waste’. As I have concluded, I grew up with that perception and this made my life so hard that sometimes when my mum was taking me to hospital after the death of my dad in 1992 when I was 12, most of her friends were telling her that ‘Colette your son is going to die my poor sister despite your efforts!’ We have also noticed that the UK authorities failed to understand or have less knowledge about the complexity of sickle cell and in nowadays the health authorities in the NHS field are struggling to understand why most sufferers and families with children with this painful genetic condition are very sceptical to speak about their condition.
Following my talk, we have several testimonies including a lady who had been left by her husband in the UK because she had at the time a child with sickle cell and her husband declined to be the father!