Sickle cell disease is a condition which affects Black people, and people from other ethnic minorities. Too many are dying needlessly from it.
Claudia williams, narrating:
Hi, I’m Claudia, and this is the Sensemaker.
One story, everyday, to make sense of the world.
Today, the racism in the NHS that’s putting lives at risk.
His absence has created such a vacuum in the house and we’re still grieving yeah every day. I don’t even know how I make it day by day devastating to see my son just pushed right before my eyes5News
You are listening to the parents of a young man called Evan Nathan Smith.
Evan was like a lot of 21 year olds. He’d just graduated from university and was entering the world of work, he was a massive Manchester United fan, he loved hanging out with his friends.
So far, so normal.
But he was also one of the 15,000 people in the UK who live with sickle cell disease, a genetic blood disorder. Occasionally, it can be fatal but with timely treatment, it doesn’t have to be.
Evan was admitted to hospital on the 17th April 2019 to remove a stent in his gallbladder.
It’s a fairly routine procedure.
So when he died there were serious questions to answer.
Sickle cell diseases disproportionately affect people of African, Caribbean, Middle Eastern, Indian and Mediterranean descent. Researchers think this might be because the diseases evolved in places where malaria is common.
The inquest into Evan Smith’s death found that had medical staff identified his symptoms sooner and treated him immediately, he wouldn’t have died.
His death triggered a parliamentary inquiry about sickle cell diseases and thalassemia, another genetic blood disorder. The findings have just been published and they are damning.
While sickle cell patients generally have good things to say about specialist haematology departments, they don’t always when it comes to doctors in A&E. According to the report, “serious care failings” are found in acute services.
It isn’t uncommon for these failures to lead to deaths.
And this is what happened to Evan Smith.
At first he was released from hospital but then he was readmitted to hospital he quickly realised that something wasn’t quite right.
In the early hours of the 23rd he felt breathless.BBC News Daily
Evan complained to doctors about pain in his hip. And his blood oxygen levels were worryingly low.
He even told doctors directly that he was worried about a sickle cell crisis happening after all, he knew what the warning signs were.
At this point, alarm bells should’ve been ringing for the medical staff. But still no one caught on to what was happening.
He requested for oxygen from the from the nursing staff, he was refused but because he knew that he needed oxygen so desperately he eventually took his mobile phone and down 999.BBC News Daily
It turned out he was right to be worried: he was experiencing a sickle cell crisis.
Doctors ordered a blood transfusion the next morning but because of delays it didn’t happen until later in the day.
And by that point, it was too late.
By now, Evan had sepsis. He died at 5:55am on April 25th 2019. The cause? Multiple organ failure. It gets worse. Because, as the parliamentary inquiry found, the mistakes made in Evan Smith’s case were not an anomaly.
The report confirmed what sickle cell patients had been saying for decades.
There was evidence to suggest that negative attitudes towards sickle cell patients were often underpinned by racism.
Over the years, both patients and concerned medical professionals have pointed to the lack of training in generalist care for sickle cell diseases.
In 2016 the Royal College of Nursing said nurses needed better training on spotting sickle cell symptoms. They warned of a poor level of awareness and knowledge in A&E departments.
Arguably, the treatment for sickle cell patients is the clearest example of the way the medical profession – both in research and in care – can discriminate against ethnic minorities, especially black people.
Because this pattern – of patients not being believed when they’re in pain and not being diagnosed in a timely manner – points to a wider issue.
Now, why are black women in the UK four times more likely to die from complications in pregnancy and childbirth than white women, deaths among women from Asian backgrounds are also two times higher than for white women one charity is trying to find out why those disparities exist.Channel 4
And it begins with training. There are significant racial disparities when it comes to medical education: medical students are often taught how to spot symptoms in white patients but not in ethnic minorities.
For example: the way that doctors are taught to spot a lack of oxygen in the blood is to see if the patient’s lips or fingertips have turned blue.
But that’s not what happens to a black patient with low oxygen levels. As a result, doctors miss the signs that could help them save a patient’s life.
There is hope on the horizon.
After nearly three decades, potentially life-changing treatment a new drug known as crizanlizumab is set to be rolled out to 5,000 people over the next three years.Sky News
Progress in gene therapy has meant they’re closing in on a cure for sickle cell diseases.
But ultimately, doctors in emergency wards are the first line of defence.
They are there in those critical – life or death – moments.
And if they aren’t being properly trained to identify symptoms in patients whatever their colour, more people may lose their lives.
This story was written by Nimo Omer and produced by Imy Harper.
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