Former Little Mix star Jesy Nelson has expressed her “heartbreak” and “outrage” at MPs following a parliamentary debate on spinal muscular atrophy (SMA) testing.
The 35-year-old singer appeared visibly distressed in a video, reacting to public health minister Sharon Hodgson’s arguments against a comprehensive SMA screening roll-out.
Ms Nelson has been a vocal campaigner for universal newborn screening for the rare condition, which causes progressive muscle wastage.
Her advocacy began after her twins, Ocean Jade and Story Monroe Nelson, received an SMA diagnosis.
The recent debate on Monday was prompted by a petition launched by Ms Nelson, which garnered over 150,000 signatures.
While it led to an announcement that SMA screening would be introduced as part of in-screening evaluations (ISE) from October 2026 – earlier than planned – Ms Nelson remains critical.
She says that the limited roll-out is “not ethical” and constitutes a “postcode lottery,” leaving 28 per cent of newborns unscreened.
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.
open image in gallery“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.
open image in gallery“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.
She rose to fame after winning The X Factor in 2011 with Little Mix alongside Leigh-Anne Pinnock, Perrie Edwards and Jade Thirlwall.
She left in December 2020 after the group had spent nearly a decade together, with chart-topping singles including Cannonball, Shout Out To My Ex and Wings.
She has released two songs as a solo artist: Boyz, which featured US rapper Nicki Minaj, in 2021 and Bad Thing in 2023.
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.