Former Little Mix star Jesy Nelson has expressed her outrage at MPs in an emotional video following a parliamentary debate on spinal muscular atrophy (SMA) testing. The 35-year-old singer was visibly upset in the nearly seven-minute video, saying she felt "heartbroken" after hearing public health minister Sharon Hodgson argue against a full SMA screening rollout.
Campaign for Newborn Screening
Nelson has been campaigning for newborn babies to be screened for SMA, a rare condition causing progressive muscle wastage, after her twins, Ocean Jade and Story Monroe Nelson, were diagnosed with it. She launched a petition that garnered over 150,000 signatures, leading to the government announcing that SMA screening would be rolled out as part of in-screening evaluations from October 2026, three months earlier than the planned January 2027 launch.
Despite the earlier timeline, Nelson argued that the limited rollout is not ethical and creates a postcode lottery, as 28% of babies will not be screened. "I listened to clinicians, experts, families, MPs all give their arguments as to why this is so important to be rolled out across the whole of England," she said. "There is factual evidence that this treatment, if given from birth, is completely life-changing to a child that is diagnosed with SMA. If your child doesn't get treatment, they will not see their second birthday, they will die before the age of two."
Questioning the Health Minister
Nelson directly questioned Minister Hodgson: "If it's safe enough for 72% of England to get this test at birth, then why is it not good enough for the 28% of England to not get tested at birth? How does that make any sense?" She also showed a video to Hodgson after the debate depicting two sisters both diagnosed with SMA but receiving different treatments—one ended up in a wheelchair while the other could run. Nelson claimed the video surprised Hodgson, who said she did not realize the full extent of early treatment.
"How do we have a health minister standing up in Parliament arguing why this should not be rolled out across the whole of England, when she doesn't even know how life-changing this treatment is, she doesn't even know the effects that it has?" Nelson said. "I cannot tell you the outrage that I feel as a mother with two children who are suffering with SMA type one, this awful disease, how heartbreaking it is to hear someone try and argue against why children with SMA, future children with SMA, should be denied of this."
Personal Hardships
The video ended with Nelson appearing emotional as she shared the hardships of caring for her daughters. "I cannot tell you how heartbreaking it is to know that my children's lives could have looked completely different. They could have been walking by now. They didn't have to be on breathing machines, they didn't have to have coughing machines," she said. "I have to give them medicine every four hours. I have to turn them every two hours, because they can't do that themselves. I have to make sure they're not choking. I have to watch them so closely to make sure that they don't choke on their own saliva, because this disease has affected their muscles with their swallowing."
"To know that there are people that are literally making this decision to make children suffer. I have no words. When are we going to get answers, and when is this going to change, because this cannot go on," she added.
Call for Full Coverage
In the video caption, Nelson called on Minister Hodgson and Health Secretary James Murray to provide a timeline for when newborn SMA screenings will reach 100% coverage across England. According to the NHS, SMA causes muscle weakness, movement problems, breathing and swallowing difficulties, muscle tremors, and bone and joint issues. Nelson said in January that her daughters' diagnosis means they are unlikely to ever walk or regain neck strength.
Nelson has become a patron of the charity SMA UK and met then-health secretary Wes Streeting in January to discuss the life-changing impact of early detection. In April, she visited 10 Downing Street.
Government Response
The Press Association understands that gaps in the evidence base currently prevent recommending a full screening rollout, rather than cost concerns. A Department of Health and Social Care spokesperson 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 will be screened for SMA from October – three months earlier than planned – to help build the evidence base needed to support a national screening programme. The babies who aren't currently included in the evaluation are not being excluded to form a 'control group'. The government is considering options to extend the programme further across the country. 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."
Sharon Hodgson has been contacted for comment.
