Am sort of new to this blogging thing but I’ll give it my best shot anyway. I want to talk about sickle cell. At least my hope is that I would generate a bit of a debate about the condition. Am also hoping to find people out there, both sickle cell sufferers and medical professionals who work with them. Perhaps, if I can get this discussion going, the question l would like us to address ourselves to is the issues of welfare support for sickle cell sufferers.
Sickle cell is a pretty mind boggling condition to say the least. In those communities where the demographic is predominantly black, you can be sure that sickle cell is there and having a severe impact on the community, in an almost silent way partly because, in my view, sufferers don’t talk about it. It’s almost like a taboo subject to a lot of sufferers and their families. There is a fair bit of stigma around the condition, I can’t figure out why. Meanwhile the despair, anxieties depression the agonising periods, the almost tsunami like devastation going on inside sufferers continues.
I’ve come into contact with so many suffers in the last few months. I have cried my eyes out looking at the devastating impact of this condition on them. When it comes to welfare benefits or support for sufferers however, it is even more shocking that it is near impossible to get the right support or benefits. Yes, as a life long condition, it is legally a disability, as per the equality act 2010. This legal recognition however does not give sufferers any kind of protection or entitlement. It is almost like, what is the point of the act?
As I said in the beginning, my hope is to generate some debate. I do believe that there are a lot of people out there with huge experience of the benefits and welfare system and also of the impact of sickle cell and are therefore able to tell us why it is so difficult for sickle cell sufferers to get benefits. Even those that are poorly seem to be turned down for employment and support allowance and personal independence payment. So why is that?