Sickle cell is the most common genetic blood disorder in the UK with approximately 17,500 people living with the condition.
The disease which typically affects people of African and Caribbean descent causes intense pain as it produces unusually shaped red blood cells that can block blood vessels which can be life-threatening.
But experts says that the disorder which has been medically known of for 100 years is not recognised, ‘treated equally’ to other blood conditions or “taken seriously.”
Campaigners say that those living with the unpredictable illness do not receive the same type of support despite it affecting every aspect of their lives leaving them unable to plan for the future.
But that overall, both believe that the glaring disparity is down to the fact that those who suffer from sickle cell are not white and are mainly Black or mixed heritage.
Bradley Dravie, 28, who suffered an episode of severe pain known as a crisis was forced to wait 21 hours before he was finally admitted at Kings College Hospital.
Prior to that, the admin assistant has had to spent much of his life in and out of A&E and underwent a hip replacement due to sickle cell at the young age of 20, which he says will need to be replaced every two decades.
But on Boxing Day last year, Bradley says he arrived at Kings hospital by ambulance at 5pm but was not taken to a ward until 2pm the following afternoon.
The 28-year-old who is 6ft 4 told The Mirror he had no choice but to sit on metal chairs in A&E during the torturous wait while battling the pain he described as someone “putting a rope” around his vital organs and “trying to pull it out of your back.”
Bradley said: “Until 5am, I was there by myself and I went to the nurse in charge and I asked her why I was there for so long and hadn’t managed to get a bed, but I could see people walking in and getting beds straight away.
“She responded saying that some people need to be isolated and some people are elderly. They have a scoring system and they asked what my level of pain is and at that point I’m like, ‘this is a 12 out of 10, it’s off the scale.’
“So the nurse said she would add me to the list and I’d be the next to get a bed but I still didn’t manage to get a bed.
“I’ve had a lot of experiences and with some people it’s like they don’t take it seriously at all and some people won’t take it seriously until they see you crying or see the agony in your eyes.”
Although Bradley was given pain relief every two hours according to his care plan, it wore off after 45 minutes each time which meant that having somewhere to lie down would have made a huge difference, as he would have been able to adjust the angle of the bed so as not to put pressure on the areas of recurring pain.
But Bradley’s experience with sickle cell isn’t unique as Professor Dame Elizabeth Anionwu, the NHS’s first sickle cell specialist nurse counsellor says the disease which affects people who aren’t white, isn’t viewed as highly as it should be.’
Speaking to The Mirror Elizabeth said: “You can go to one hospital and find excellent services, and go to another and see tragic cases of individuals dying preventable deaths. That makes you realise there has to be continuous improvement. Covid impacted on the NHS incredibly and they’re still picking up the pieces.
“You’ve got a lack of staff and staff are not up to date on sickle cell or even knowledgeable about sickle cell. Its not viewed in as high a way as it should be. “
Chief Executive of the Sickle Cell Society John James OBE says race plays a part in how the disease and patients are viewed.
John said: “There is an element of race that plays into this because it primarily affects people who look like me who are Black or brown or mixed race or mixed heritage.
“You’ve got to go back and ask yourself why a condition that’s been known about medically for so long and a condition that is probably the biggest blood genetic condition in this country – why is it so underserved?
“Why is there a lack of research and investment and funding? The origins of that are about the fact that it has been neglected as a service and the consequence of that neglect and underfunding and element of racism means that people that live with this condition bear the brunt of variable services.”
Bradley who had his first sickle cell crisis in Year 7, says he’s had to be admitted to hospital six times in the last year due to the disease.
The 28-year-old says he was unable to complete university where he was studying Business Information Technology as a result of having his hip replaced which he left him “depressed.”
Bradley said: “I had my hip replacement. I complained about my hip hurting being in pain but they didn’t take it seriously up until the point I couldn’t walk.
“I was in so much pain I couldn’t bend my leg properly to just sit down. If it was dealt with early, I could have avoided having a hip replacement. By the time they found out what was going on the hip had already decayed and needed replacement.
“I was so depressed. It was so heartbreaking that at such a young age I had to go under a procedure they don’t even like doing for people that are under the age of 60.
“Its like now that I’ve had it replaced and I’ll have to keep having it replaced every 20 years. At the time I was at university, I couldn’t finish. I had to leave. It was a very sad moment for me.”
Speaking to The Mirror, Labour MP for Clapham and Brixton Hill Bell Ribeiro-Addy says Black people who have the condition are discriminated against as they aren’t believed when experiencing pain.
The MP said: “We have a situation where its not treated equally to other genetic conditions and the only difference we can ascertain is not the numbers because its the fastest growing genetic condition in the UK.
“It’s only that the people it tends to affect are not white. There is that prejudice of believing that Black people are not experiencing as much pain as they’re in.
“If you have sickle cell anemia and you’re prone to crisis, you probably have an extremely high pain threshold.
“You also understand that because you are prone to crisis, when you’re in pain you might not be expressing it the way people do. You may not be thrashing about. You may not be screaming. That doesn’t mean you’re not in pain.”
Bell has also called for sickle cell sufferers to get equal support to others in the workplace who have genetic blood disorders.
She said: “The motion is relating to work and recognsing that [sickle cell] is not recognised in workplaces as other conditions are.
“That is another inequality and it means that people in workplaces don’t make reasonable adjustments for it. Those with sickle cell are not asking for anything extra than other with similar conditions get. Its about equality in terms of meeting their specific needs for their conditions.”
But for Bradley who says his life has been derailed by the disease and the treatment he has received, he hopes that more awareness will be raised about the condition that so many suffer from.
He said “I feel like with sickle cell because its a silent disease, you cant see what’s going on. Its not visible. I just to make people aware of how sickle cell can affect your life and the trajectory of your life.”
A spokesperson for King Hospital Foundation Trust said: “We are very sorry Mr Dravie was unhappy with his experience at King’s, and for the delays in finding him a suitable bed. As with hospitals across the country, we are experiencing extremely high demand for our services.
“During his time in the Emergency Department, Mr Dravie was given strong pain relief promptly and regularly as per his treatment plan – the first within 30 minutes of arrival, in accordance with best practice guidelines. We urge Mr Dravie to speak to the clinical team about any concerns.
“When Mr Dravie was transferred to King’s in late 2015 for hip pain associated with sickle cell disorder, a decision was taken with him to manage his condition without surgery, and the reasons for this were explained to Mr Dravie. As time went on and his pain worsened, in consultation with Mr Dravie, he was added to the waiting list and received hip replacement surgery in summer 2017. If Mr Dravie has further questions about this, our sickle cell team will be happy to assist him.”
An NHS spokesperson said: “Sickle cell disorder can have a devastating impact on people’s lives which is why the NHS has worked hard to make life-changing treatment available as part of our wider drive to improve the quality and experience of care for sickle cell patients.
“This includes securing the latest cutting-edge therapies, including revolutionary gene-editing therapy, Casgevy, and blood group genotyping to reduce the risk of adverse reactions to blood transfusions.
“The NHS is also rolling out sickle cell emergency units across the country which by-pass A&E departments and send patients in sickle cell crises straight to clinicians with specialist training to get the pain relief and support they need without delay.”
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