Jesy Nelson has criticized the government’s response to calls for newborn screening for spinal muscular atrophy, the rare condition affecting her twin daughters.
The former Little Mix singer shared an emotional video after a Westminster Hall debate on Monday, June 22, saying she felt “heartbroken” and “outraged” that ministers had not committed to an immediate full rollout of SMA screening across England.
The Independent reported that Nelson accused the current plan of creating a “postcode lottery” because the first stage of screening is expected to cover most, but not all, newborns in England.
Nelson has been campaigning for SMA to be added to the newborn heel-prick screening test after her twin daughters, Ocean Jade and Story Monroe, were diagnosed with SMA Type 1.
Nelson Said the Debate Left Her “Outraged”
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Nelson’s video followed the parliamentary debate on e-petition 755980, which called for the government to fund and fast-track the process of adding SMA to the NHS newborn blood spot test.
Hansard records Labour MP Lewis Atkinson opening the debate by referring to Nelson’s twin daughters and their diagnosis. He said the petition had been signed by 149,692 people and praised Nelson for using her public platform after sharing the diagnosis in January.
According to The Independent, Nelson said she listened to clinicians, experts, families and MPs argue for wider screening before public health minister Sharon Hodgson responded for the government. Nelson questioned why screening could be considered safe enough for 72% of babies in England but not available to the remaining 28% from the start.
The Petition Pushed SMA Screening Into Parliament
The petition, created by Nelson, remains open until August 9. The petition page says SMA is a rare genetic condition with serious consequences if not treated early, and argues that every baby should be screened at birth so families can get early diagnosis and access to treatment.
Muscular Dystrophy UK said Nelson watched the debate alongside representatives from SMA UK and Muscular Dystrophy UK. The charity said MPs from different parties attended and raised concerns about babies missing early diagnosis because of where they are born.
During the debate, MPs also discussed how quickly treatment can matter for babies with SMA. The UK National Screening Committee says SMA affects nerves in the spinal cord and can affect movement, speech, swallowing and breathing. It also says early detection can allow babies to be referred quickly for clinical assessment and treatment.
The NHS Evaluation Is Due to Begin in October
The UK National Screening Committee says an in-service evaluation of newborn SMA screening in NHS services in England is set to start in October 2026. The evaluation is designed to test the feasibility, acceptability, effectiveness and cost-effectiveness of adding SMA to the newborn blood spot screening programme in real NHS settings.
Muscular Dystrophy UK said the evaluation will cover 72% of newborns in England and does not include babies born in Wales or Northern Ireland. The charity listed Bristol, Cambridge, Leeds, Liverpool, Oxford and Portsmouth among the English areas where newborn screening will not be offered from October under the current plan.
The UK National Screening Committee said the evaluation will begin in seven newborn screening laboratories in England that already have the equipment needed to start screening. NHS England is also exploring how the evaluation could be extended across the rest of the country.
Campaigners Say the Partial Rollout Leaves Babies Unequal
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Nelson’s argument is that families will still miss the chance for early testing if screening depends on birthplace. The Independent reported that she showed Hodgson a video of two sisters with SMA who received treatment at different times and had very different outcomes.
Muscular Dystrophy UK said campaigners still had no clear commitment to end the postcode lottery and offer SMA screening to all babies across the UK. The charity said the debate was a positive step, but added that there is still more work to do.
A Department of Health and Social Care spokesperson told The Independent that planning is under way for a large NHS trial from October and that babies not currently included in the evaluation are not being excluded to form a control group. The department said the government is considering options to extend the programme further.
Nelson is now calling for Hodgson and Health Secretary James Murray to give families a clear timeline for 100% SMA screening coverage across England.