Jesy Nelson has spoken out in anger after MPs debated SMA screening in Parliament, calling the current system unfair for families across the UK.
The former Jesy Nelson said she feels “heartbroken” and “outraged” after hearing plans for a limited rollout of SMA screening. SMA screening has become a key issue for the singer after her twin daughters received the diagnosis.
Nelson has pushed for nationwide testing since doctors diagnosed her twins, Ocean Jade and Story Monroe Nelson, with spinal muscular atrophy. The rare condition weakens muscles and can become life-threatening without early treatment.
On Monday, lawmakers discussed the issue after Nelson’s public petition gained more than 150,000 signatures. The debate focused on plans to begin SMA screening in parts of England from October. However, the programme will only cover around 72 percent of newborns during its first stage.
That means thousands of babies in several cities will not receive the test at birth. Nelson strongly criticised that decision and said it creates a “postcode lottery” for families. She argued that every child should receive equal access to life-saving checks.
In an emotional social media video, Nelson questioned why some babies would miss out. She said early diagnosis could have changed her daughters’ lives completely. According to Nelson, her twins now need constant care, including medication every four hours and physical support throughout the day.
She explained that the condition affects their breathing, movement, and swallowing. Health minister Sharon Hodgson defended the staggered rollout during the debate. Hodgson said only seven of the NHS’s 13 testing labs currently have the equipment needed for SMA screening.
She added that more centres could join if resources improve. Several MPs also challenged the limited rollout and raised concerns over fairness. Campaigners and health charities welcomed progress but called for wider coverage. The charity Muscular Dystrophy UK said no family should face delays based on where they live.
SMA screening remains a major focus for Nelson’s campaign. She vowed to keep fighting for full national access. For now, SMA screening continues to divide opinion as pressure grows on ministers to expand the programme faster.
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