{"id":694778,"date":"2026-07-16T12:21:09","date_gmt":"2026-07-16T12:21:09","guid":{"rendered":"https:\/\/www.newsbeep.com\/uk\/694778\/"},"modified":"2026-07-16T12:21:09","modified_gmt":"2026-07-16T12:21:09","slug":"jesy-nelson-says-national-rollout-of-baby-sma-screening-is-a-victory","status":"publish","type":"post","link":"https:\/\/www.newsbeep.com\/uk\/694778\/","title":{"rendered":"Jesy Nelson says national rollout of baby SMA screening is a ‘victory’"},"content":{"rendered":"

Former Little Mix singer Jesy Nelson has welcomed news there will be a national rollout of spinal muscular atrophy (SMA) screening for newborns, after previously describing it as a “postcode lottery”.<\/p>\n

Nelson began campaigning for newborn babies to be screened after her twins, Ocean Jade and Story Monroe Nelson, were diagnosed with the rare condition<\/a>, which causes progressive muscle wastage.<\/p>\n

The Department of Health announced on Thursday that the national newborn screening programme for SMA will be rolled out across England as part of an evaluation programme from the end of this year.<\/p>\n

Hundreds of thousands of babies will be screened as part of the simple heel prick blood test shortly after birth.<\/p>\n

Nelson 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.<\/p>\n

“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\u2019m incredibly proud to have supported.<\/p>\n

“This is a victory for every family affected by SMA. Whilst it can\u2019t change the future of our children, I know it marks the beginning of a brighter future for future SMA families.”<\/p>\n

In a post on Instagram last month, accompanied by a video of her becoming emotional, Nelson said a previous announcement that screening would come in October was a big milestone but would “only cover 72% of England”.<\/p>\n

She added: “That means some babies won\u2019t be screened simply because of where they live. A postcode lottery like that just isn\u2019t fair.<\/p>\n

“Every baby deserves the same chance, every baby\u2019s life matters.”<\/p>\n

The new development means all parts of England will be covered by the evaluation, which will inform future recommendations on testing newborns by the UK National Screening Committee.<\/p>\n

Former Little Mix singer Jesy Nelson. Credit: AP<\/p>\n

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.<\/p>\n

“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.<\/p>\n

“We are delighted to see the confirmation that the remaining six screening laboratories will begin screening from October 2027, this demonstrates a clear commitment to making newborn screening available across England.<\/p>\n

“No family should face a postcode lottery when it comes to a condition where every day without treatment can lead to irreversible loss of motor neurons.”<\/p>\n

Subscribe free to our weekly newsletter <\/a>for exclusive and original coverage from ITV News. Direct to your inbox every Friday morning. <\/p>\n

SMA can leave babies unable to sit up, crawl or walk. In the most severe cases, it stops them breathing or swallowing.<\/p>\n

Early treatment, however, can delay the progressive nature of the illness and help children live longer.<\/p>\n

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.<\/p>\n

“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.<\/p>\n

“I\u2019m in awe of the campaigners who\u2019ve worked tirelessly to raise awareness of this rare but very serious genetic condition. We\u2019re moving faster and rolling screening out more widely to ensure children get the best treatment from the earliest possible moment.”<\/p>\n

Scotland is establishing a similar screening programme drawing on funding from the private sector.<\/p>\n

The Department of Health and Social Care is taking a similar approach and seeking \u00a35 million of investment to expand evaluation.<\/p>\n

Want a quick and expert briefing on the biggest news stories? Listen to our latest podcasts to find out What You Need To Know. <\/p><\/p>\n","protected":false},"excerpt":{"rendered":"Former Little Mix singer Jesy Nelson has welcomed news there will be a national rollout of spinal muscular…\n","protected":false},"author":2,"featured_media":694779,"comment_status":"","ping_status":"","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[32],"tags":[6491,96,56,54,55],"class_list":["post-694778","post","type-post","status-publish","format-standard","has-post-thumbnail","category-celebrities","tag-celebrities","tag-entertainment","tag-uk","tag-united-kingdom","tag-unitedkingdom"],"_links":{"self":[{"href":"https:\/\/www.newsbeep.com\/uk\/wp-json\/wp\/v2\/posts\/694778","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.newsbeep.com\/uk\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.newsbeep.com\/uk\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/uk\/wp-json\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/uk\/wp-json\/wp\/v2\/comments?post=694778"}],"version-history":[{"count":0,"href":"https:\/\/www.newsbeep.com\/uk\/wp-json\/wp\/v2\/posts\/694778\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/uk\/wp-json\/wp\/v2\/media\/694779"}],"wp:attachment":[{"href":"https:\/\/www.newsbeep.com\/uk\/wp-json\/wp\/v2\/media?parent=694778"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.newsbeep.com\/uk\/wp-json\/wp\/v2\/categories?post=694778"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.newsbeep.com\/uk\/wp-json\/wp\/v2\/tags?post=694778"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}