Evan Smith, who had sickle cell disease, died in hospital at the age of 21 from sepsis. He had called 999 from his hospital bed after staff lacked understanding of his condition. But, why is awareness of sickle cell disorders still so limited? Shingi Mararike talks to Dame Elizabeth Anionwu, who singer Dua Lipa honoured at the 2021 Brit Awards, about how awareness has ebbed and flowed since she was Britain’s first specialist sickle cell nurse. Plus, Evan’s parents, Betty and Charles, speak about the day they lost their son, and how they hope his legacy will be one of lasting change.