Jesy Nelson has expressed fury at public health minister Sharon Hodgson after a parliamentary debate on spinal muscular atrophy (SMA) screening, accusing the minister of denying life-saving tests to 28% of newborns. The former Little Mix singer, 35, broke down in tears in a seven-minute video recounting her visit to parliament, where she confronted Hodgson over the limited rollout.
Campaign for Universal Newborn Screening
Nelson’s twins, Ocean Jade and Story Monroe, were diagnosed with SMA type 1, a rare condition causing progressive muscle wastage. She argued that the current partial rollout creates a postcode lottery, with 72% of babies screened while 28% are excluded. “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%?” she asked in the video.
During the debate, Nelson showed Hodgson a video of two sisters with SMA who received different treatments—one now in a wheelchair, the other able to run. She said the minister seemed unaware 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?” Nelson added.
Emotional Plea as a Mother
Nelson described the daily hardships of caring for her twins, who require medicine every four hours and repositioning every two hours. “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 said. “To know that there are people that are literally making this decision to make children suffer. I have no words.”
In January, Nelson became a patron of SMA UK and met then-Health Secretary Wes Streeting to discuss early detection. She revealed her daughters are unlikely to ever walk or regain neck strength.
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 spokesperson added that the government is considering extending the programme further.
