Jesy Nelson and other parents of babies born with spinal muscular atrophy (SMA) have accused the government of forgetting these infants after the resignation of former Health Secretary Wes Streeting. Campaigners attended a Westminster Hall debate on Monday demanding that all newborns be tested for the condition, which can be effectively cured if treated at birth before irreversible nerve damage occurs. However, Health Minister Sharon Hodges told MPs that an NHS pilot would still exclude over 160,000 newborns a year to ensure screening “will do more good than harm.”
Government Delay Sparks Anger
Streeting had promised in April to task NHS England with expanding the pilot to cover all newborns, but his resignation two months ago left the initiative in limbo. Giles Lomax, chief executive of SMA UK, whose eight-year-old twins Finn and Zara have SMA, said: “During that 12-week period since Wes’s announcement, another 12 babies are likely to have been born with SMA and they will face a life of complex health care needs. These babies have been forgotten.” He added that the government appeared to be “rowing back on this commitment” under Streeting’s successor, James Murray.
NHS Pilot and Control Group Concerns
The NHS pilot, which will start in October 2026 (three months earlier than originally planned), will test most babies but still leave over 160,000 untested each year to form a control group. International evidence shows that screening prevents deaths and lifelong disability while saving the health service money. Most European countries now screen at birth for SMA as part of the heel prick test. During the debate, dozens of MPs spoke in favour of universal screening, but Minister Hodges stressed the need for “robust data” and said decisions must be made with “great care.”
Jesy Nelson’s Personal Campaign
Former Little Mix singer Jesy Nelson, whose one-year-old twins Ocean and Story have SMA, has joined forces with the Mirror to campaign for universal testing. She has highlighted that late diagnosis meant her twins began treatment too late after irreversible nerve damage, and they will never walk. Lomax described the government’s stance as “a kick in the teeth for the SMA community and rare diseases more widely,” urging the UK to follow international clinical evidence.
A Department of Health and Social Care spokeswoman said: “Jesy and other campaigners have made a very powerful case on screening for spinal muscular atrophy, and we have heard that case. Planning is under way for a large-scale trial across the NHS, where hundreds of thousands of babies for SMA will be screened from October – three months earlier than planned – to help build the evidence base needed to support a national screening programme.” She added that the government wants to see more children with SMA “not just surviving but thriving.”
