Former Little Mix singer Jesy Nelson has expressed her fury at MPs in an emotional video following a parliamentary debate on spinal muscular atrophy (SMA) testing. The 35-year-old was visibly distressed throughout the nearly seven-minute clip, describing herself as "heartbroken" after hearing public health minister Sharon Hodgson speak out against a full SMA screening roll-out.
Campaign for Newborn Screening
Nelson has been at the forefront of campaigning for newborn babies to be screened for the rare condition, which causes progressive muscle wastage, following the diagnosis of her twins, Ocean Jade and Story Monroe Nelson. Monday's debate followed Nelson launching a petition that garnered more than 150,000 signatures, after which it was confirmed that SMA screening would be introduced as part of in-screening evaluations (ISE) from October 2026, rather than the originally planned January 2027 launch.
Despite the testing being brought forward, Nelson argued that the limited roll-out is neither ethical nor fair, amounting to a postcode lottery that means 28% of newborns will still go unscreened. Reflecting on the debate, Nelson said: "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. 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?"
Emotional Plea to Health Minister
Nelson revealed she presented a video to Ms Hodgson following the debate featuring two sisters both diagnosed with SMA, yet receiving different treatments, resulting in one being wheelchair-bound while the other could run alongside her. The performer alleged the footage caught Ms Hodgson off guard, who admitted she hadn't grasped the full significance of early intervention. She continued: "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? 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 footage concluded with Nelson visibly distressed as she described the difficulties she faces while caring for her two daughters. She said: "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. 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."
Call for Full Screening Coverage
In the caption, she called on Ms Hodgson and Health Secretary James Murray to set out a clear timeframe for achieving complete newborn SMA screening coverage throughout England. The NHS states that SMA results in muscle weakness, difficulties with movement, respiratory and swallowing complications, muscle tremors, and skeletal issues. The performer revealed in January that her daughters' condition means they're unlikely to ever achieve the ability to walk or recover their neck strength.
Nelson has subsequently taken on the role of patron for the charity SMA UK and, in January, held discussions with the then-health secretary Wes Streeting regarding the transformative difference early identification of the condition could have made for her twins. She made a visit to 10 Downing Street back in April. The Press Association understands that it is gaps in the current evidence base, rather than financial considerations, that are preventing the recommendation of a full screening programme rollout.
Government Response
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.
