Former Little Mix singer Jesy Nelson has described the roll-out of spinal muscular atrophy (SMA) screening as a “postcode lottery” which “isn’t fair”.
Nelson, 35, campaigned for newborn babies to be screened after her twins, Ocean Jade and Story Monroe Nelson, were diagnosed with the rare condition, which causes progressive muscle wastage.
Earlier this year, Nelson launched a petition which received more than 150,000 signatures, before it was announced that SMA screening would be rolled out as part of in-screening evaluations (ISE) from October 2026 rather than the planned January 2027 launch.
In a post on Instagram, accompanied by a video of her becoming emotional, Nelson said: “We have had some amazing news that screening is due to start in October this year, which is a huge step forward.
“But there’s still a big problem, it will only cover 72% of England. That means some babies won’t be screened simply because of where they live. A postcode lottery like that just isn’t fair.
“Every baby deserves the same chance, every baby’s life matters.”
In the video, she said the limited roll-out was “playing with children’s lives and that is not ok”, and added “it makes me so sad to think that my children’s lives could’ve been so different”.
Nelson said she would be attending a debate in Westminster on her petition on Monday alongside Giles Lomax, the chief executive of the charity SMA UK, and called for supporters to join her when she arrives at 5pm for a photo.
She added: “No baby should miss out because of their postcode. Let’s keep fighting until every newborn has the same opportunity. Thank you for standing with us every step of the way.”
Nelson met then-health secretary Wes Streeting in January to speak about the life-changing impact early detection of the condition could have had on her twins, and in April she visited 10 Downing Street.
She also became a patron of charity SMA UK in February.
When the earlier roll-out for screening was announced, Nelson said she was “proud” of achieving the “major milestone”.
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.
SMA causes muscle weakness, movement problems, problems with breathing and swallowing, muscle tremors, and bone and joint problems, according to the NHS.
Nelson also had a series of complications during her pregnancy, including twin-to-twin transfusion syndrome (TTTS), which the NHS says is caused by abnormal connecting blood vessels in the placenta which leads to an imbalanced blood flow from one twin to the other.
Her pregnancy was documented in Jesy Nelson: Life After Little Mix, a six-part Prime Video documentary series.
Nelson’s twins celebrated their first birthday in May, and Nelson described it as a “milestone”.
The singer 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 their winning song 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.
The NHS has been contacted for comment.