Health Secretary Wes Streeting has pledged to review screening for a severe genetic condition after former Little Mix singer Jesy Nelson revealed her twin daughters have been diagnosed with it.
Nelson's Emotional Appeal for Newborn Testing
In an emotional Instagram video posted on Sunday, the 34-year-old singer shared that her babies, Ocean Jade and Story Monroe Nelson-Foster, have been diagnosed with spinal muscular atrophy type 1 (SMA1). This is the most severe form of the progressive condition, which causes muscles to weaken and waste over time, impacting mobility, breathing, and swallowing.
Nelson described "the most gruelling three/four months and endless appointments" leading to the diagnosis. She voiced her frustration that in many other countries, a simple heel prick test at birth can detect SMA1, enabling early intervention that can dramatically improve 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... 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."
Streeting's Pledge to Review NHS Screening
Responding to the news, Health Secretary Wes Streeting told ITV News he was moved by Nelson's story and agreed with her call for action. "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."
Streeting acknowledged the significant medical advancements in treating SMA, noting that more treatments are available than ever before. However, he conceded that Nelson was right to criticise the time it takes to get a diagnosis in the UK.
"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," Streeting said. "That’s why I’m determined to look not just at screening for SMA, but to make much better use of genomic medicine."
The Current UK Screening Landscape
The UK's position on SMA screening is currently under review. The UK National Screening Committee does not yet recommend universal newborn screening for the condition, although it has commissioned further work to reassess this stance in light of new treatments.
There is a postcode lottery in place, with Scotland set to introduce routine newborn SMA screening from spring 2026. Without early treatment targeting the altered genes, babies with SMA1 typically do not live beyond two years.
Charities like Muscular Dystrophy UK have long campaigned for universal screening, arguing that early diagnosis is crucial for effective treatment. Streeting's comments suggest the Westminster government may now be prepared to accelerate changes to the NHS screening programme, potentially bringing England, Wales, and Northern Ireland in line with Scotland's planned approach.
