Jesy Nelson's campaign wins NHS newborn screening for SMA

A campaign led by singer Jesy Nelson has pushed the NHS to introduce newborn screening for spinal muscular atrophy (SMA). The move follows her own experience after her twins were diagnosed with the rare muscle-wasting condition. Now, over 400,000 babies in England will be tested annually from October 2026. Nelson’s 10-month-old twins, Ocean and Story, were diagnosed with SMA Type 1—a condition not covered by the NHS’s current newborn screening programme. At present, the health service tests for 10 treatable conditions, including cystic fibrosis, but SMA was not among them when her children were born.

The mother has since campaigned for universal SMA testing, describing the daily medical care her twins require as emotionally draining. Her efforts gained momentum when a petition, signed by 100,000 people, secured a parliamentary debate. From October 2026, SMA screening will become standard across England. However, the rollout will begin in select areas before expanding nationwide. The change means early detection for thousands of newborns, potentially improving outcomes for those with the condition.

The NHS will now include SMA in its newborn screening, starting with limited regions before full implementation. This decision comes after public pressure and Nelson’s advocacy, ensuring future babies receive earlier diagnosis and treatment. The policy shift marks a significant expansion of the existing programme.