The Health Secretary has publicly supported Jesy Nelson’s call for improved screening processes for spinal muscular atrophy (SMA), following the diagnosis of her twin daughters with the rare genetic condition.
Wes Streeting commended the singer for challenging the current system, pledging to review not only SMA screening but also the broader application of genomic medicine within the NHS.
Nelson, a former member of Little Mix, revealed on Sunday that her babies, Ocean Jade and Story Monroe Nelson-Foster, had been diagnosed with SMA1, the most severe form of the condition.
Her announcement highlighted a critical gap in UK healthcare: newborn screening for SMA is not routinely available, although Scotland is set to introduce it from the spring. The UK National Screening Committee currently does not recommend universal screening but has commissioned further work to reassess this stance in light of treatment advancements.
Speaking to ITV News, Mr Streeting expressed his admiration for Nelson’s candour. "My heart goes out to Jesy Nelson and I think the way she has spoken about what must be an unimaginably frightening situation has been commendable," he said. "She’s challenged us to go further on screening, and she is right to do so."
The Health Secretary acknowledged the significant progress in treating SMA, noting, "There are now more treatments available for spinal muscular atrophy than ever before... we are seeing children with SMA now not just living and surviving but thriving."
He added, "Where I think Jesy Nelson is right to challenge and criticise is how long it takes to get a diagnosis, and there is screening available, and that’s why I’m determined to look not just at screening for SMA, but to make much better use of genomic medicine."
Nelson shared her family’s ordeal in an Instagram video, describing "the most gruelling three/four months and endless appointments" leading to the diagnosis.
The 34-year-old voiced her frustration, explaining that in other countries, a simple heel prick test at birth can detect SMA1, allowing for early intervention that can dramatically alter a child’s prognosis.
"The majority of this can be prevented if it’s detected from birth and all it takes is a heel prick," Nelson stated. "It’s not in this country, there’s many countries where it is tested at birth with just a simple heel prick, and I don’t think anyone understands how much this can change your child’s life – it can literally save their legs, it can save so many parts of their body and essentially stop them from dying."
We’re deeply moved and saddened by Jesy Nelson’s news that her twin daughters have been diagnosed with Type 1 SMA.
— Spinal Muscular Atrophy UK (@SMA_UK_) January 5, 2026
SMA UK is here for everyone affected by SMA, No family should face the heartbreak of a preventable delay in diagnosis.
Full statement here: https://t.co/AXsaCcuClv pic.twitter.com/O0ubDWp6TS
SMA is a progressive genetic condition that causes muscles to weaken and waste over time, impacting mobility, breathing, and swallowing.
SMA, affecting approximately one in 10,000 babies worldwide, is the most common and severe form. Without treatment targeting the altered genes, babies with SMA1 typically do not live beyond two years. Symptoms include floppiness, inability to raise heads, difficulty sitting, and impaired breathing and swallowing.
Muscular Dystrophy UK has advocated for universal newborn screening for SMA, arguing that early diagnosis is crucial for effective treatment and improved outcomes.
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