Parents of children with spinal muscular atrophy (SMA) have expressed concerns that Wales is being left behind as other parts of the UK introduce routine newborn screening for the condition. Following campaigning, including by former Little Mix star Jesy Nelson, SMA testing will be implemented in England and trialled in Scotland.
However, routine newborn screening for SMA will not be introduced in Wales or Northern Ireland. The Welsh government stated it has followed guidance from the UK National Screening Committee (NSC), which has not recommended routine newborn screening for SMA.
Warren Davies, whose three-year-old daughter Ophelia-May has SMA type 2, said it felt like the Welsh government was "playing god because they have the opportunity to effect change and they are choosing not to". Ophelia was diagnosed in February 2025, at nearly two-and-a-half years old, after her parents noticed physical delays.
Mr Davies stated that data indicates medication outcomes are greater with an earlier diagnosis. The Welsh government acknowledged SMA as "a devastating diagnosis" and said the in-service evaluation in England would help inform a future recommendation from the UK NSC regarding SMA screening across the UK.