Former Little Mix star Jesy Nelson has said she is outraged at MPs in an emotional video following a debate about spinal muscular atrophy (SMA) testing in parliament.
The singer, 35, was visibly upset in the near seven-minute video and said she felt “heartbroken” after hearing the public health minister Sharon Hodgson argue against a full SMA screening roll-out.
Nelson has been campaigning for newborn babies to be screened for the rare condition, which causes progressive muscle wastage, after her twins, Ocean Jade and Story Monroe Nelson, were diagnosed with it.
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The debate on Monday came after Nelson launched a petition, which received more than 150,000 signatures, before it was announced that SMA screening would be rolled out as part of in-screening evaluations (ISE) from October 2026 rather than the planned January 2027 launch.
Despite testing being moved earlier than planned, Nelson claimed the limited roll-out is not ethical and is a postcode lottery, as it means 28% will not be screened.
Speaking about 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?”
Nelson said she showed a video to Ms Hodgson after the debate of two sisters who were both diagnosed with SMA, however, received different treatments, leading one to be in a wheelchair while the other was able to run alongside her.
The singer claimed the video surprised Ms Hodgson, who told her she did not realise the full extent of early treatment.
She added: “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 video ended with Nelson appearing emotional as she shared the hardships she experiences 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.”
In the caption, she called on Ms Hodgson and the 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, problems with breathing and swallowing, muscle tremors, and bone and joint problems.
The singer said in January that her daughters’ diagnosis would mean they are unlikely to ever be able to walk or regain their neck strength.
Nelson has since become a patron of the charity SMA UK and, in January, met the then-health secretary Wes Streeting to speak about the life-changing impact early detection of the condition could have had on her twins.
In April, she visited 10 Downing Street.
The Press Association understands that gaps in the evidence base currently prevent the rollout of a screening programme from being recommended, rather than the costs incurred.
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.
