Former Little Mix star Jesy Nelson has expressed profound outrage at Members of Parliament following a recent debate concerning spinal muscular atrophy (SMA) testing, describing the situation as a "postcode lottery" for vulnerable newborns.
The singer, visibly emotional in a nearly seven-minute video, shared her "heartbreak" after Public Health Minister Sharon Hodgson argued against a full national rollout of SMA screening.
Nelson's impassioned campaign for universal newborn screening stems from her personal experience, as her twin daughters, Ocean Jade and Story Monroe Nelson, were both diagnosed with the rare condition, which leads to progressive muscle wastage.
The parliamentary debate on Monday followed a petition launched by Nelson, which garnered over 150,000 signatures.
While it was announced that SMA screening would be introduced as part of in-screening evaluations (ISE) from October 2026 – three months earlier than initially planned – Nelson contends that this limited rollout is unethical. She highlights that the current plan means 28% of babies will not be screened, creating an unacceptable disparity.
Speaking about the debate, Nelson stated: "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. 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."
She directly challenged Ms Hodgson’s stance, asking: "So my question to Sharon is, 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?"
Nelson recounted showing Ms Hodgson a video after the debate, featuring two sisters with SMA who received different treatments, resulting in one using a wheelchair while the other could run. The singer claimed Ms Hodgson was surprised by the video, admitting she hadn't realised the full extent of early treatment's impact.
"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 questioned. "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. You are basically telling me that if you live in a certain postcode, you’re not as important as the other 72% of England."
The video concluded with Nelson tearfully describing the daily challenges 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. 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," she shared.
"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." In her video caption, Nelson urged Ms Hodgson and Health Secretary James Murray to provide a clear timeline for achieving 100% SMA screening coverage across England.
According to the NHS, SMA manifests as muscle weakness, movement difficulties, breathing and swallowing problems, muscle tremors, and issues with bones and joints. Nelson revealed in January that her daughters’ diagnosis meant they were unlikely to ever walk or regain neck strength.
Since then, Nelson has become a patron of the charity SMA UK. In January, she met with the then-health secretary Wes Streeting to discuss the transformative potential of early detection for her twins. She also visited 10 Downing Street in April.
The Press Association understands that current gaps in the evidence base, rather than cost, are cited as preventing a full screening programme recommendation.
A Department of Health and Social Care spokesperson stated: "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.
