On 23 April 2019, Evan Smith was so desperate for oxygen that he called 999 from his hospital bed. A nurse had refused him oxygen, and he felt dialling the emergency services was his only hope.
Two days later, he was dead.
Smith, a 21-year-old from Walthamstow, north-east London, treasured his family and friends and was an “intelligent and caring young man with a very bright future ahead of him”, said his parents Charles and Betty Smith.
He was also a sickle cell disease patient, which is when red blood cells become crescent-shaped and can lead to health problems and painful symptoms, as blood vessels to certain parts of the body become blocked.
Smith had been admitted to North Middlesex Hospital on 18 April, diagnosed with an infection after becoming feverish following a routine procedure. An inquest into his death earlier this year found he may have survived if staff had recognised his sickle cell symptoms and dealt with them sooner.
The failings and mistakes in this case are familiar to sufferers of sickle cell disease, which most commonly affects people of African or Caribbean heritage.
“Failings in care for individuals with sickle cell disorder are sadly not isolated incidents and… sickle cell patients all too often receive sub-standard care,” says the Sickle Cell Society.
Britain’s most comprehensive inquiry into the experience of sickle cell disease patients, released this week on 15 November, pointed to the role of racism in their sub-standard care. “As sickle is mainly a black illness, they jump to the conclusion that we’re all ‘junkies’ and not in pain at all,” one patient told the all-party parliamentary group for sickle cell and thalassaemia.
The inquiry’s findings are part of a wider story of health inequality in Britain, with black patients – whether they are sickle cell disease sufferers, mothers giving birth, or people detained under the Mental Health Act – all facing discrimination in healthcare.
These longstanding injustices were exposed even further by Covid-19 and its disproportionate impact on black and ethnic minority communities. (It has also been suggested that the resulting loss of trust in the health system could have been one reason behind the slower uptake of the coronavirus vaccine among certain minority groups in Britain.)
Cases like that of Evan Smith, and the countless other experiences uncovered by the sickle cell inquiry, are evidence of the racial inequality that exists in British health services. As Roger Kline, an expert on workplace culture and discrimination in healthcare and a research fellow at Middlesex University, told me last year: “People are asleep at the wheel… Those who are deciding look different from those who are dying. This doesn’t prove they’re racist – it just shows the need for diversity.”