UK newborns among least screened in developed world despite Jesy Nelson’s campaign victory

BABY screening in the UK is among the worst in the developed world even after Jesy Nelson’s bid to add her daughters’ condition to the test, campaigners warn. All infants will be checked for spinal muscular atrophy from October, thanks to a crusade by the Little Mix star. Baby screening in the UK checks for fewer conditions than most other developed nations, ranking 28th out of 36 countries Credit: Getty Little Mix star Jesy, 35, began her campaign on spinal muscular atrophy after her twins, Ocean and Story, were born with the disease but were not diagnosed until nerve damage started Credit: Instagram The addition means England‘s NHS blood test, taken in the first week of a baby’s life, will detect 11 genetic conditions. But this is fewer than any other nation in the G10 and most European countries. Sign up for the Health newsletter Thank you! Figures show many including the US, Australia, Canada, Italy – and even Russia – check for two or three times as many. Georgina Morton, chair of the Archangel MLD Trust, said: “We’re one of the richest countries in the world, but when it comes to newborn screening we’re starting to look like a third world country. “Italy screens for 49 conditions, Australia for 40, Norway for 39, yet here in the UK we will screen for just 11 from October. “It is needlessly costing lives and there is simply no excuse for that when it costs literally pennies to screen a child.” The charity is campaigning for metachromatic leukodystrophy, known as MLD, to be added to the list. The NHS newborn blood spot test looks for rare illnesses and disabilities that are present from birth but may not show up until later in life, so doctors can treat them early. Most read in Health They include sickle cell disease, cystic fibrosis and underactive thyroid. A 2025 report by the charity Genetic Alliance UK said: “The UK still lags behind most comparable nations… we must catch up.” Analysis of 36 countries in Europe, North America and Australasia ranked the UK 28th, with only eight countries screening for fewer conditions. They were Romania, Cyprus, Bulgaria, Greece, Malta, Luxembourg, Latvia and Croatia. Within the UK, Scotland tests for 11 and England ten, while Wales and Northern ­Ireland test nine each. Bob Stevens, chair of the Newborn Screening Collaborative, said: “The state of screening in the UK is absolutely lamentable. “We’re one of the wealthiest economies in the developed world but we have one of the worst screening programmes in existence. “This has been a struggle for 10 to 20 years and it’s getting worse. “We should be doing in excess of 20 conditions like most of the EU.” Nick Meade, chief executive of Genetic Alliance UK, added: “When we do deliver screening in the UK it transforms care and support, and has life-saving potential. “There are conditions which have been screened for in other countries for so long that it is difficult to see how much more evidence we could possibly need.” Little Mix star Jesy, 35, began her campaign on spinal muscular atrophy after her twins, Ocean and Story, were born last year with the disease but were not diagnosed until nerve damage started. Jesy is a doting mum to Ocean and Story Credit: Instagram Jesy’s twins have Spinal Muscular Atrophy Type 1 Credit: Instagram/Jesynelson It is similar to muscular dystrophy and causes disability by preventing muscles in the arms, legs and back from working properly. Andy Fletcher, chief of Muscular Dystrophy UK, said: “No baby should miss out on vital early diagnosis and treatment due to where they live. “There are still no plans to introduce newborn screening for SMA in Wales or Northern Ireland. “The longer it takes for newborn screening to be available across the UK, the more babies will be diagnosed too late.” Comment now