Jesy Nelson slams ‘postcode lottery’ for newborns after SMA debate
Former Little Mix star Jesy Nelson has accused the government of creating a “postcode lottery” for newborn babies after a parliamentary debate on spinal muscular atrophy (SMA) screening ended without a commitment to nationwide testing. In an impassioned video lasting nearly seven minutes, the singer said she felt “heartbreak” and “outrage” after hearing Public Health Minister Sharon Hodgson argue against a full rollout of screening for the rare genetic condition.
Nelson directly challenged the minister, asking: “If it’s safe enough for 72% of England to get this test at birth, then why is it not good enough for the 28% of England to not get tested at birth? How does that make any sense?” She described the current plan as telling families in certain areas that they “are not as important” as the rest of the country.
Outrage at the ‘postcode lottery’
Nelson’s anger was triggered by the government’s proposed rollout of SMA screening, which will begin as an in-service evaluation (ISE) in October 2026 — three months earlier than originally planned, but still only covering about 72% of births in England. The remaining 28% of newborns will not be screened as part of this initial phase. Babies in Wales and Northern Ireland are not currently included in any planned screening programme, though Scotland began its own two-year evaluation in March this year — the first part of the UK to do so.
Nelson said she listened to “clinicians, experts, families, MPs all give their arguments as to why this is so important to be rolled out across the whole of England” during Monday’s Westminster Hall debate. She noted that “factual evidence” shows early treatment given from birth is “completely life-changing” for a child diagnosed with SMA. “If your child doesn’t get treatment, they will not see their second birthday, they will die before the age of two,” she said.
After the debate, Nelson said she showed Ms Hodgson a video of two sisters with SMA who received different treatments — one now uses a wheelchair while the other can run. The singer claimed the minister was surprised and admitted she “hadn’t realised the full extent of early treatment’s impact”. Nelson asked: “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, she doesn’t even know the effects that it has?”
The parliamentary debate and petition
The debate was triggered by Nelson’s petition, which gathered more than 150,000 signatures. During the session, a number of MPs called on the government to expand screening nationwide. However, Ms Hodgson argued that decisions about national screening programmes must be made “with great care” to ensure they “do more good than harm” and are delivered “safely and fairly”. She said there remain “many unanswered questions” about the benefits and practical delivery of SMA screening.
A Department of Health and Social Care spokesperson later said the government had “heard” the case made by Nelson and other campaigners. “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 said. They added that babies not included in the evaluation are “not being excluded to form a ‘control group’” and that “the government is considering options to extend the programme further across the country.”
The UK National Screening Committee (UK NSC) has previously recommended against SMA screening, citing a lack of evidence for the effectiveness of a screening programme, uncertainty about how best to support positive results, and insufficient evidence on treatments for asymptomatic individuals. In June 2023, the committee agreed to review its position, endorsing a two-pronged approach: a new cost-effectiveness modelling study and the in-service evaluation that is now set to begin.
The areas of England that will not be included in the initial ISE from October include Bristol, Cambridge, Leeds, Liverpool, Oxford, and Portsmouth — precisely the kind of geographical disparity that has drawn Nelson’s fury.
Nelson’s personal ordeal
Nelson’s campaign is rooted in her own experience as a mother. Her twin daughters, Ocean Jade and Story Monroe Nelson, were both diagnosed with SMA type 1, the most severe form of the disease. In January, she revealed that the diagnosis meant they were unlikely ever to walk or regain neck strength, and that they began treatment too late to prevent irreversible nerve damage.
In her video, Nelson tearfully described the daily reality of caring for her children. “I cannot tell you how heartbreaking it is to know that my children’s lives could have looked completely different. They could have been walking by now. They didn’t have to be on breathing machines, they didn’t have to have coughing machines,” she said. “I have to give them medicine every four hours. I have to turn them every two hours, because they can’t do that themselves. I have to make sure they’re not choking. I have to watch them so closely to make sure that they don’t choke on their own saliva, because this disease has affected their muscles with their swallowing.”
She became a patron of the charity SMA UK, and in January met the then-health secretary Wes Streeting, who intervened to bring the start of the NHS pilot forward from January 2027 to October 2026. She also visited 10 Downing Street in April. Campaigners believe Streeting’s resignation — he was replaced by James Murray on 14 May — led to a perceived backtracking on commitments.
Why early diagnosis matters
SMA is a rare genetic condition that causes progressive muscle weakness and loss of movement. It attacks the motor neurons in the spinal cord, impairing the ability to move, speak, swallow and breathe. Without treatment, the most severe form — type 1, which affects Nelson’s daughters — is often fatal before the age of two. According to the NHS, symptoms include muscle weakness, movement difficulties, breathing and swallowing problems, muscle tremors, and issues with bones and joints.
There is no cure, but several treatments can dramatically slow or halt the progression of the disease if given early enough. The drugs nusinersen (Spinraza), risdiplam (Evrysdi), and the gene therapy onasemnogene abeparvovec (Zolgensma) are all available on the NHS. From 14 May 2026, nusinersen and risdiplam were made routinely available in England after managed access agreements. These treatments are most effective when administered before symptoms appear; data shows they significantly improve survival rates and developmental milestones.
The government’s plan to cover only 72% of births means that an estimated 28% of babies — those born in the excluded areas — will not receive this potentially life-saving early intervention. Modelling studies suggest that newborn screening for SMA could be cost-effective for the NHS, preventing deaths, reducing the need for ventilation, and preventing severe disability. A major national study, the Service Evaluation for Newborn Screening for SMA (SENS), led by the University of Oxford and funded by the National Institute for Health and Care Research (NIHR), will begin in August 2026 and aims to screen up to 755,000 newborns in England.
Internationally, several countries — including the United States, Germany, Japan, Ukraine, and most European nations — already have SMA newborn screening in place. Scotland’s programme, funded jointly by the Scottish Government and pharmaceutical company Novartis, is already under way and its results are intended to complement the English evaluation.
The Press Association understands that current gaps in the evidence base, rather than cost, are cited as preventing a full screening recommendation. But Nelson, and many clinicians, argue that a partial rollout is unethical, particularly when the benefits of early treatment are so stark. As she put it, “To know that there are people that are literally making this decision to make children suffer. I have no words. When are we going to get answers, and when is this going to change, because this cannot go on.”
In the caption of her video, Nelson called on Ms Hodgson and Health Secretary James Murray to provide a clear timeline for achieving 100% coverage of SMA screening across England. No such timeline has yet been given.
