‘You are basically telling me that if you live in a certain postcode, you’re not as important’
Jesy Nelson has accused the government of creating an “outrageous” postcode lottery after the public health minister argued against a full national rollout of newborn screening for spinal muscular atrophy (SMA). In an emotional nearly seven-minute video, the former Little Mix star said she could not contain her anger at hearing the minister stand in Parliament and question why every baby in England should be tested for the disease at birth.
Nelson’s twin daughters, Ocean Jade and Story Monroe, who are now 13 months old, were both diagnosed with SMA type 1 — the most common and severe form of the rare inherited genetic condition. It affects the motor neurons that control voluntary muscle movement and is the number one genetic cause of infant mortality. Without treatment, the NHS says, children diagnosed with the condition are unlikely to see their second birthday. Nelson revealed in January that her daughters would never walk or regain neck strength, and they rely on breathing machines, coughing machines and round-the-clock care to prevent choking on their own saliva.
The singer’s public campaign for universal screening began with a petition that gathered more than 150,000 signatures, forcing a parliamentary debate on Monday. Dozens of MPs called for nationwide screening to be added to the routine newborn heel-prick test. But Public Health Minister Sharon Hodgson told the debate that the government could not yet recommend a full rollout, citing “many unanswered questions about the benefits and practical delivery of screening for SMA”.
Nelson was present for the debate and afterwards confronted Hodgson directly. She showed the minister a video of two sisters with SMA who had received different treatments: one was in a wheelchair while the other could run. According to Nelson, Hodgson admitted she had not realised the full extent of what early treatment could achieve. “How do we have a health minister standing up in Parliament arguing why this should not be rolled out across the whole of England, when she doesn’t even know how life-changing this treatment is?” Nelson asked.
Hodgson told MPs that decisions about national screening programmes must be made “with great care”, ensuring that screening does more good than harm and that it is delivered safely and fairly. She said there remained unanswered questions about the benefits and practical delivery of screening for SMA. The Press Association understands that gaps in the evidence base, rather than cost, are cited as the reason preventing a full recommendation. The UK National Screening Committee last reviewed SMA screening in October 2018 and did not recommend it, citing insufficient evidence on effectiveness, treatment and testing. In June 2023 the committee agreed to reconsider, and in August 2025 it published a review of the need for an in-service evaluation.
Why 28% of babies will miss out – and what it means
The government has announced that SMA screening will be introduced as part of an in-service evaluation (ISE) in England from October 2026 — three months earlier than originally planned, after then-health secretary Wes Streeting intervened. But the ISE will only cover approximately 72% of babies in England, meaning more than a quarter of newborns — 28% — will not be screened. Nelson has described this as a “postcode lottery” and condemned the decision as unethical.
The phased rollout will be delivered across seven NHS newborn screening laboratories and is expected to screen up to 755,000 newborns. A companion research study, the SENS trial, funded by the National Institute for Health and Care Research (NIHR) and led by the University of Oxford, is due to begin in August 2026, with final results not expected until 2031. Campaigners, including the charity SMA UK, of which Nelson is a patron, argue that the pace is far too slow, especially given that many other developed nations — including the United States, which added SMA to its federal Recommended Uniform Screening Panel in 2018, and most of Europe — already screen all newborns at birth.
Scotland introduced newborn screening for SMA on 23 March 2026 as part of its own in-service evaluation. In the US, Illinois began testing all newborns in June 2020, and international evidence shows that countries which screen for SMA prevent deaths and lifelong disability while also saving health service money. Newborns treated before symptoms appear are far more likely to achieve gross motor milestones.
The current plan for the English pilot means that more than 160,000 babies a year will remain untested to form what some campaigners describe as a “control group”, though a Department of Health and Social Care spokesperson insisted that the babies not included are “not being excluded to form a control group”. The spokesperson said: “Jesy and other campaigners have made a very powerful case on screening for spinal muscular atrophy, and we have heard that case. Planning is under way for a large-scale trial across the NHS, where hundreds of thousands of babies will be screened for SMA from October – three months earlier than planned – to help build the evidence base needed to support a national screening programme.” The spokesperson added that the government is considering options to extend the programme further across the country, and that “we hope families can feel reassured that progress is being made, with more treatments available for spinal muscular atrophy than ever before”.
Wes Streeting, who as health secretary met Nelson and SMA UK chief executive Giles Lomax in January and later invited Nelson to 10 Downing Street in April, had asked NHS England to look at expanding the pilot so all newborns would be tested. His resignation and replacement by James Murray have raised concerns among campaigners that the government may have “rowed back” on earlier commitments. Hodgson told the debate that decisions must be robust enough to support a lasting national programme. “There remain many unanswered questions about the benefits and practical delivery of screening for SMA,” she said, “and those questions matter because the answer we seek must be robust enough to support a lasting national programme.”
Nelson, who has become a patron of the charity SMA UK, ended her video by directly challenging Hodgson and Health Secretary James Murray to provide a clear timeline for achieving 100% coverage. “If it’s safe enough for 72% of England to get this test at birth,” she asked, “then why is it not good enough for the 28% of England to not get tested at birth? How does that make any sense?”