I’m tired of watching sickle cell patients have preventable deaths

The past few weeks have been extremely difficult — heartbreaking, even.

Here in the U.K., I’ve seen two recent reports about sickle cell patients dying from negligence. Both of their deaths were preventable.

As MyLondon reported in September, Dave Onawelo presented to the emergency department in December 2023 and told staff he was experiencing a sickle cell crisis. According to a coroner’s report, he was deemed not acutely unwell after an initial assessment and was later refused help by a nurse who said she was “busy with six patients.” The nurse also reportedly told Onawelo’s mother, who had accompanied her son to the hospital, that she was being anxious.

More than an hour later, Onawelo was struggling to breathe, drowsy, and slouched to one side, so medical staff assessed him again. At this point, he began having seizures, went into cardiac arrest, and died soon after.

Recommended Reading

November 19, 2024 News by Marisa Wexler, MS

Grant supports work to expand sickle cell care where most needed

The coroner’s Prevention of Future Deaths report noted that hospital staff “failed to adequately identify a critically ill patient with a pre-existing co-morbidity, sickle cell anaemia, that carried with it a high risk of acute deterioration. Earlier introduction of fluid resuscitation, blood transfusion and [IV] antibiotics is likely to have resulted in a non-fatal outcome.”

These recommendations are standard treatments for a sickle cell crisis. Had the medical team listened to Onawelo and administered proper and timely treatment, perhaps he would’ve lived to fight another day. Instead, his life was robbed. The coroner concluded that “a lack of compassion and clinical curiosity contributed” to Onawelo’s death.

Another report published by The Independent this month shares the result of an inquest into the death of sickle cell patient Wayne Bayley in May 2022. According to the article, Bayley was in prison and raised concerns about his cell’s lack of cleanliness. Officers restrained him, moved him to a segregated cell, and conducted a strip search in which his clothes were cut off. Bayley was then left naked for seven hours.

The article notes that the nurse in charge of Bayley’s care at this time failed to address his deteriorating condition and take vital observations that would’ve demonstrated a need for urgent hospital care. Instead, he was referred for a mental health assessment.

On his way there, Bayley collapsed and told staff he couldn’t breathe. He was ignored, and no care was provided. A few hours later, Bayley died.

The inquest found that Bayley “died of acute chest syndrome – the most common fatal complication of sickle cell disease – caused by the restraint.” Although Bayley’s records clearly stated he had sickle cell disease, his health history was not considered, and he didn’t receive the treatment he needed. I cannot even fathom the level of debilitating pain he must have experienced in his final hours.

The initial autopsy listed Bayley’s medical cause of death as “unascertained,” highlighting a lack of understanding about sickle cell and its complications. The burden of uncovering the truth fell on his family. Instead of having time and space to grieve, they had to fight to get answers and ensure the right people were held accountable for this tragic loss of life.

We must keep screaming

It’s always hard to learn about the death of another sickle cell patient. But that difficulty is heightened when the death resulted from others’ negligence.

We sickle cell patients have screamed. We have shouted. We have sought to teach healthcare professionals about the illness. We have facilitated training sessions. We have used our own experiences and sacrificed our patient confidentiality to help educate so that others don’t suffer the injustices we have. None of it seems to be working.

Patients continue to experience preventable deaths because of a lack of care from those who are supposed to care for us.

I hope the loved ones of patients we have lost know that they’re not alone. Our patient community stands with them. And though it drains us emotionally and tries our patience, we continue to persevere and push for change. We use our experiences and knowledge to work toward a world where sickle cell patients are believed, treated fairly, and receive timely and adequate care. A world where no sickle cell patient dies because people didn’t do their jobs properly.

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.