Public services are dismissing sickle cell patients because the illness disproportionately affects Black people, campaigners have warned.
The blood disorder is prevalent among African and Caribbean communities and advocacy groups say this means it remains poorly understood within state institutions, often leading to the needless suffering and even death of those diagnosed.
The issue has gained wider attention following the high-profile cases of two Black men, Richard Okorogheye and Evan Nathan Smith, who lived with the disease and died amid claims their vulnerabilities were overlooked by the NHS and police.
Chris Abdullahi, co-founder of charitable initiative Sound of Sickle, told The Independent it is common for sickle cell patients’ painful symptoms to be ignored by healthcare practitioners.
He said he has heard similar accounts “well over 100 times” from across the UK.
“Just last week someone else mentioned that they were in hospital and had to battle their nurses for pain medication from opioids to something as simple as ibuprofen,” the 27-year-old, who also lives with sickle cell, said.
These experiences serve to further entrench the “massive sense of distrust” in the healthcare system which is evidenced through lower vaccine uptake in Black communities, Mr Abdullahi explained.
A lack of awareness about the disease has led sickle cell patients to often form informal support networks, through which information can be exchanged about the best hospitals at which to maximise the chances of their condition being taken seriously.
Source: The Independent, 18 April 2021