MPs Debate SMA Newborn Screening: England's Rollout Confirmed From October, But Not Yet for Everyone

On 22 June 2026, MPs held a Westminster Hall debate on newborn screening for spinal muscular atrophy, triggered by a public petition that gathered more than 149,000 signatures. The debate gave families across the UK the clearest picture yet of when — and for whom — SMA newborn screening will actually begin in England, and it was a genuinely mixed result: real progress, but not the full national rollout campaigners were asking for.

Where the petition came from

The petition, "Review the evidence and fund the addition of SMA to the Newborn Screening Test," was started after former Little Mix singer Jesy Nelson's twin daughters were diagnosed with SMA. It called on the Government to review the evidence and fund the addition of SMA to the NHS newborn heel-prick screening test UK-wide. Having passed 100,000 signatures, it was automatically considered for a Commons debate by the Petitions Committee, which scheduled the Westminster Hall session for 22 June, opened by Lewis Atkinson MP on the Committee's behalf.

What the Government actually committed to

Responding for the Government, public health minister Sharon Hodgson confirmed that NHS England is preparing a large-scale in-service evaluation (ISE) of SMA newborn screening — known as the SENS study (Service Evaluation for Newborn Screening for SMA) — due to start in October 2026, three months earlier than the previously planned January 2027 start. The evaluation, recommended by the UK National Screening Committee and led by Professor Laurent Servois at the University of Oxford, will run across the seven NHS newborn screening laboratories in England that already have the equipment needed to test for SMA.

On the Government's own figures, that means an estimated 404,000 babies — roughly 72% of births in the areas covered — will be offered SMA screening as part of the evaluation, while around 163,000 newborns (roughly 28%) will act as an unscreened comparison group, at least until the evaluation reports and a decision is made on whether to extend screening to the rest of England.

A mixed reaction

Jesy Nelson, who attended the debate, said she felt "outraged" and "heartbroken" that ministers did not commit to an immediate, full national rollout, arguing that if the test is safe and beneficial enough to offer to 72% of babies in England, it shouldn't be withheld from the other 28% simply because of where they happen to be born. She has said she intends to keep campaigning.

SMA UK, which has campaigned on this issue for years and is a named partner in the SENS study, gave the news a more measured welcome. Chief executive Giles Lomax called the October 2026 start "a major milestone," while also noting that the pilot's partial coverage means SMA UK will keep pressing the Government and NHS to extend screening "quickly, consistently and equitably" across all four UK nations.

What this means for families

Scotland has offered SMA newborn screening to every baby since March 2026. In England, whether a baby born from this October is offered the test will now depend on which of the seven participating laboratories serves their area — a postcode-dependent gap TreatSMA has flagged before and will continue to. The evaluation itself is a genuine and welcome step: it is designed to generate the real-world evidence on feasibility, clinical effectiveness and cost-effectiveness that the UK National Screening Committee says it needs before recommending screening for every baby in the country. But for families outside the initial catchment areas, that means more waiting for a test that can be the difference between diagnosis before symptoms appear and diagnosis after irreversible nerve damage has already begun.

We'll keep tracking this story, including which laboratories and regions are confirmed as the October start date approaches, and will report back as soon as there's news on full national coverage.

Sources

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