Attitudes Need to Change if Sickle Cell Patients are to get the Treatment they need Exposing the Failings, Offering the Solutions - Abstract
As we approach National Sickle Cell Awareness Month, Sickle Cell Disorder (SCD) remains a little understood life-threatening medical condition. In the global SHAPE study [1] nearly half of medical practitioners cited difficulties understanding the condition, due their patients having a different ethnic background from them, a third found sickle cell (SC) patients challenging to understand. Patients however want patient safety, knowledge and safeguarding from long term risks, organ damage, mental health, poor care, discriminatory behaviors, contaminated blood, etc.
If the above exposes the elephant in the room, it is
exacerbated by poor funding levels, a lack of research, noninclusion in trials, specialist media ignoring patient views etc.
Sadly, healthcare commissioners have been doing the same; never taking action to level up. Indeed, Inquests are generating ‘Prevention of Future Death reports’, recording what people living with SC always knew, SC patients dying are because of poor basic care and/or neglect while in hospital; the findings on race and inequality make for uncomfortable reading. MPs were peaked, prompting the 2021 Parliamentary enquiry on sickle cell named, ‘No One’s Iistening’ [2-10].