The Sickle Cell Society

What's the No One's Listening report?

So it came about from the Sickle Cell Society and the all-parliamentary group as a result of avoidable deaths of patients across the country pretty much and it basically um yeah it was a report just highlighting the failures that we were that we had for patients and um a lot of it was around compassion around medical professionals not understanding what sickle cell is Not giving the right treatments, not escalating fast enough.

Just really devastating stuff.

I don't know if you heard about a young man called Evan Smith.

I don't know what the right word, because it's not support the fight, because that's not what we're talking about, but it's more about trying to address the fact that there is a massive cost implication to managing and dealing with and living with sickle cell.

Are there any organisations that you guys would recommend that people can get involved in? Let's say someone's like, oh, I'm giving blood already, what more can I do? i don't know if you guys are aware of any i

think the main one would be the sickle cell society and lots there are people that have their own smaller groups or smaller organizations yeah so there's lots online for people to look into and support the main one is the circle cell society yeah

and they do a lot of they do quite a lot of nice things to help sort of give sickle cell kids like opportunities to have sort of like, I don't know, weekend retreats, but everything is sort of, they're factored in the fact they might