England to screen newborns for SMA after celebrity campaign

The UK government will add spinal muscular atrophy (SMA) to England’s newborn screening programme from October. The policy change, announced on the eve of a new Prime Video documentary, follows a high-profile campaign by former Little Mix singer Jesy Nelson.

Nelson had been filming a documentary about her life since leaving the band and the birth of her premature twins, Ocean and Story. What producers captured instead was the moment the seven-month-old girls were diagnosed with a life-threatening muscle-wasting condition.

The documentary captures the family receiving the news via an iPad video call at their home in Essex. Nelson’s mother, Janice White, had sounded the alarm after noticing the babies were not kicking their legs. “I feel like I’m going to be heartbroken for the rest of my life,” Nelson tells the camera afterwards.

The significance of the film lies in its exposure of a critical gap in public health infrastructure. As a consultant in the documentary states: “We’ve already somehow wasted a lot of time [in treating the twins], as unfortunately SMA is still not part of the newborn screening in the UK.”

If diagnosed at birth through a standard heel-prick blood test, gene therapy could have stopped the twins' muscles from wasting entirely. Because the diagnosis came late, the lost muscle cannot be healed. Without any intervention, the condition is fatal by the age of two. The twins now require specialist equipment to move, eat, sit up and possibly breathe.

Nelson subsequently launched a campaign to mandate SMA screening, becoming a patron of the charity SMA UK. The documentary features her confronting the then-UK health secretary, Wes Streeting, on breakfast television to demand a change in the rules.

The announcement that England will adopt the test marks a partial victory, but it also highlights a fragmented approach to healthcare standards across the region. Scotland has already implemented the screening, with a quick prick from a midwife delivering results in just 66 minutes. Wales and Northern Ireland, however, remain excluded from the new English mandate.

Beyond the policy debate, the film underscores the immense, often invisible care burden placed on families. Following Nelson’s separation from the twins’ father, Zion Foster, her mother moved in to provide full-time care. The documentary shows the daily realities of this workload, from burned saucepans left on the stove during emergencies to specialist chairs hidden behind the washing machine.

As the documentary closes with the twins celebrating their first birthday, the policy victory in England provides a bittersweet ending. For Nelson, the early diagnosis she was denied will now protect other families across the country.