The Department of Health has announced that the national newborn screening programme for spinal muscular atrophy (SMA) will be fully rolled out across England, following a campaign by Little Mix singer Jesy Nelson. Her twins, Ocean Jade and Story Monroe Nelson, were diagnosed with the rare condition, which causes progressive muscle wastage.
Campaign Success After Postcode Lottery Concerns
Nelson began campaigning after describing the previous patchy availability as a "postcode lottery." In a statement, she said: "After years of campaigning, it means so much to see the heel prick test for SMA begin rolling out from October, with implementation continuing throughout 2027 until every newborn screening laboratory across the UK is offering the test."
She added: "Today is a day of hope. Knowing that future families will have access to early diagnosis and the opportunity for the best possible outcomes is something I'm incredibly proud to have supported."
Details of the Screening Programme
The screening will be part of the simple heel prick blood test given to hundreds of thousands of babies shortly after birth. The evaluation programme will start from the end of this year, with full coverage across all of England by October 2027. This addresses Nelson's earlier concern that a previous announcement would "only cover 72% of England," leaving some babies unscreened based on location.
Giles Lomax, chief executive officer of Spinal Muscular Atrophy (SMA) UK, said: "After years of campaigning by the SMA community and our partner organisations, this is a hugely important step forward. When newborn screening for SMA begins later this year in October, thousands of babies will benefit from earlier diagnosis and access to life-changing treatment."
Impact of SMA and Early Treatment
SMA can leave babies unable to sit up, crawl, or walk. In the most severe cases, it stops them breathing or swallowing. Early treatment can delay the progressive nature of the illness and help children live longer. Health Secretary James Murray said: "No parent should have to watch their child lose the ability to move or breathe, knowing that earlier treatment could have made all the difference."
He added: "This expansion means babies across England will be tested from birth, giving them the best possible chance of a full and healthy life, and another step in the right direction as we do all we can to reduce health inequalities."
Future Plans and Funding
The Department of Health and Social Care is seeking £5 million of investment to expand the evaluation. Scotland is also establishing a similar screening programme drawing on funding from the private sector. Lomax expressed gratitude: "We are incredibly grateful to the families, clinicians, researchers, supporters and campaigners who have helped us reach this point, and we look forward to the day when every newborn across the whole of the UK is offered this simple, life-changing test."
