SMA screening has sparked fresh debate after former Little Mix singer Jesy Nelson criticised MPs and called the planned newborn testing roll-out across the UK unfair and inadequate.
Doctors diagnosed Nelson’s twins, Ocean Jade and Story Monroe Nelson, with spinal muscular atrophy (SMA), and she said she felt “heartbroken” and “outraged” after a parliamentary debate on the condition.
The singer has campaigned for routine SMA screening for newborn babies, arguing that early diagnosis can transform outcomes. When doctors detect the condition early, treatment can slow or prevent severe symptoms linked to the muscle-wasting disease.
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Public health minister Sharon Hodgson defended the phased introduction of screening, saying limits in testing capacity across NHS laboratories forced the government to stagger the roll-out.
After attending Monday’s parliamentary debate, Nelson posted an emotional video on Instagram and asked why access should depend on location.
“If it’s safe enough for 72% of England to get this tested at birth, then why is it not good enough for the other 28%?” she asked.
Nelson launched a public petition that drew more than 150,000 signatures and helped trigger the debate.
Under current plans, SMA newborn screening will begin in October 2026, three months earlier than first proposed, but it will initially cover about 72% of newborns in England. Several areas will miss out in the first phase, while Wales and Northern Ireland have yet to announce screening programmes.
Health officials said the UK National Screening Committee recommended the gradual introduction so it can assess screening effectiveness and NHS treatment costs before a wider expansion.
During the debate, Hodgson said only seven of the UK’s 13 NHS testing laboratories currently have the equipment needed for screening.
Nelson said delays could have life-changing consequences for families. She described the daily care her children need and said earlier treatment might have changed their experience.
Campaigners and charities welcomed the parliamentary attention but urged ministers to expand screening nationwide and end regional differences in access.
Spinal muscular atrophy affects muscle strength and movement. Gene therapy and other treatments can improve outcomes, but specialists say early diagnosis remains vital because irreversible damage can occur before symptoms appear.
