‘No One’s Listening’ to Sickle Cell Patients, and That Must Change

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by Dunstan Nicol-Wilson |

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The results of a government inquiry tasked with investigating the failures of sickle cell care in the U.K., published in a report titled “No One’s Listening,” reveal evidence of substandard care, inadequate training of healthcare professionals, and attitudes that were underpinned by racism. Since these findings were released, there has been increased pressure by government officials to investigate the matter further.

Reports of poor quality of care don’t come as a surprise for many sickle cell patients. For us, this is not new or groundbreaking information. Every sickle cell patient I have met has a story to tell of neglect or mistreatment in a hospital here in the U.K.

The avoidable death of Evan Nathan Smith in April 2019, which triggered the report, is not the only preventable death to have occurred within the sickle cell community. Smith was only 21 when he died in his London hospital bed following a routine procedure after staff failed to recognize the signs of a sickle cell crisis and denied his requests for oxygen treatment. Smith had even dialed 999 — the British emergency services number — from his hospital bed in an effort to get help.

For many sickle cell patients who are experiencing a crisis, the emergency department is the last resort. This is because our experience is that health professionals likely won’t know how to care for us. As a result of my own traumatic experiences in the hospital, it’s difficult for me to trust that the national healthcare system designed to care for me actually will.

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My most memorable experience of mistreatment at the hands of healthcare professionals happened in 2012 — nearly a decade before the “No One’s Listening” report. Failures back then were plentiful.

On one occasion, it took an ambulance crew more than an hour to arrive because I wasn’t considered a priority. And then it took several more hours for me to be seen once I was in the emergency room. This happened despite treatment protocols advising that time is critical when treating a sickle cell crisis, and a quick response is the best way to shorten the duration of one.

Once I was seen, I was given an over-the-counter drug I could’ve taken at home, which had no impact on the pain. I didn’t receive the appropriate medication until a few hours later.

Because I try to keep calm when I’m having a crisis in order to help manage the pain, I’ve had nurses tell me I don’t look like I’m in pain. Other professionals have asked how long I have had sickle cell disease. Other times, I’ve had to justify my requests for more medication, teach professionals about my condition, and explain how I needed to be treated.

In moments like these, it has felt degrading to be confronted by such a lack of empathy and knowledge about the condition I am suffering from. These moments underscore the reality that because sickle cell disease affects predominantly Black people, the lack of research and investment into this disease are the products of deep inequalities within the U.K. healthcare system.

It’s easy to lose hope when you have a genetic condition that nobody seems to care about. For a long time, no one has listened to sickle cell patients, and it feels like what it takes is one of us dying for change to happen.

The inquiry is a step toward highlighting the neglect and systemic health inequalities for sickle cell patients. I hope it will result in some improvements in the standard of care across the U.K. for sickle cell patients. There is so much work to be done.

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Note: Sickle Cell Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Sickle Cell Disease News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to sickle cell disease.

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