Jesy Nelson blow as SMA babies 'have been forgotten' after Wes Streeting resigns

Jesy Nelson blow as SMA babies 'have been forgotten' after Wes Streeting resigns EXCLUSIVE: Jesy Nelson and other parents of babies born with spinal muscular atrophy (SMA) attended a debate in Parliament demanding all newborns are tested for condition Babies like Jesy Nelson’s twins who have a devastating muscle wasting disease “have been forgotten” by the government, campaigners say. The former Little Mix singer and other parents of babies born with spinal muscular atrophy (SMA) this week attended an MPs debate calling for all newborns to be tested for the condition. NHS treatments are now effectively a cure, but only if administered at birth before irreversible nerve damage in the first weeks of life. In an update from the government on Monday night, health minister Sharon Hodges told MPs and campaigners that an NHS pilot was still refusing to test more than 160,000 newborns a year - to be sure that screening “will do more good than harm”. Campaigners believe the resignation of previous health secretary Wes Streeting - who three months ago promised to look into expanding screening to all newborns - has meant the government appears to have “rowed back on this commitment”. Mr Streeting’s successor is James Murray. SMA UK said that in the 12 weeks since Mr Streeting promised to task the NHS with making a proposal for England-wide testing, 12 more untested babies will have been born with SMA. Their parents will now be noticing loss of movement in their newborns but many will not have a diagnosis confirmed for several months. Giles Lomax, chief executive of charity SMA UK, whose eight-year-old twins Finn and Zara have SMA, told the Mirror: “Yesterday was a big moment for the SMA community. However we left Parliament feeling extremely disappointed with the government’s response and lack of urgency when we know every moment matters. “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. “Why was there no detailed handover to the new Secretary of State? At the moment, the government has chosen to exclude babies and we believe this is just wrong.” An NHS pilot testing most newborn in England at birth had been delayed for years but former Health Secretary Wes Streeting intervened after meeting Jesy so that its start date was brought forward from January 2027 to October this year. However under current plans over 160,000 newborn babies a year will remain untested to form a “control group”. When making this announcement in April, Mr Streeting said he would ask NHS England to look at expanding the pilot so that all newborns are tested. However two months ago Mr Streeting resigned as health secretary leaving the fate of these babies in limbo. During the Westminster Hall debate in Parliament, dozens of MPs spoke and all called on the government to expand SMA screening nationwide. At the end of the debate, health minister Sharon Hodgson said: “I know that many families and advocates feel that the government has moved too slowly towards a decision on screening for SMA and I understand that frustration. “Decisions about national screening programmes must be made with great care and we must be confident that screening will do more good than harm and that it can be delivered safely and fairly, and that we are making the best possible use of NHS resources for the babies that fundamentally depend on them. “There remain many unanswered questions about the benefits and practical delivery of screening for SMA and those questions matter because the answer we seek must be robust enough to support a lasting national programme.” International evidence shows countries which screen prevent deaths and lifelong disability, as well as saving the health service money. Most of Europe now screens at birth for SMA as part of the newborn heel prick test. Mr Lomax continued: “On April 1 the previous Secretary of State said ‘his officials were working through the challenges related to expanding the In-service Review to the whole of England and that he would like to see full roll out’. “Exactly 12 weeks later, we receive no update from the government regarding expansion, and in fact it was apparent that they were rowing back on this commitment. “What has changed in the last 12 weeks? Yes a new minister but why a different approach? What this feels like is a kick in the teeth for the SMA community and rare diseases more widely. “The minister said ‘we need robust data to make national decisions’. When will the UK government look outside their own borders to the international and clinical network? The evidence is clear. Screening is the best method for improved health outcomes. “The community has been fighting for years and we will continue to raise these issues of inequity and a postcode lottery until the government takes action.” Former pop star Jesy Nelson has joined forces with the Mirror to campaign for all newborns to be checked for SMA. The 34-year-old has highlighted how late diagnosis of her own one-year-old twins meant they began treatment too late after irreversible nerve damage was done. She has been told they will never walk. A spokeswoman for the Department of Health and Social Care 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. “We hope families can feel reassured that progress is being made, with more treatments available for spinal muscular atrophy than ever before. We want to see more children with SMA not just surviving but thriving.”