Life will never be the same for Leila and Errol Smith after the death of their 22-year-old son Darnell, who lived with disabilities including sickle cell disease . Darnell Smith died on 23 November 2022 after medics took his vital signs just once in 12 hours instead of the prescribed hourly checks. Earlier this year, a coroner called on health bosses at Royal Hallamshire Hospital in Sheffield to take action to prevent future deaths.

Darnell, from Sheffield, received regular treatment for cerebral palsy and sickle cell disease, which is an inherited, long-term and potentially life-threatening condition, most common among Black people. It affects about 15,000 in England. It causes debilitating pain and multiple problems such as severe infections, strokes, chronic fatigue, delayed growth, and progressive tissue and organ damage.

He was also non-verbal, epileptic and entirely dependent on others for his care. As the UK observes Sickle Cell Awareness month in September, Darnell’s parents, Leila and Errol, say they do not feel the inquest’s ruling went far enough. “What we would like is more accountability from the NHS and the members of staff who were working that day,” Errol said.

They say his case reflects the failures of care experienced by patients with sickle cell. “I feel like there’s still a lot of injustice still being done, not just because of what happened to Darnell but also to other sickle cell patients within hospital settings all over England . It’s not.