The chair of a powerful parliamentary committee has backed the Mirror campaign to test all babies for a muscle wasting disease.

Layla Moran MP is chair of the Health and Social Care Committee which scrutinises the Government on health policy. She has written to Health Secretary Wes Streeting to ask why a £5 check for spinal muscular atrophy still has not been added to the NHS newborn heel prick test - years after potentially curative treatments became available on the NHS.

It comes after former Little Mix singer Jesy Nelson raised the profile of the rare disease by bravely speaking out about the diagnosis of her twin girls. She has been told they will never walk after being diagnosed and treated too late before irreversible nerve damage had been done. Every month four more babies are diagnosed with SMA in similar circumstances.

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Ms Moran said: “I am writing to you following The Daily Mirror’s campaign to ensure testing is available for all newborn babies for Spinal Muscular Atrophy or SMA. The newspaper reports that an in-service evaluation of the use of screening of newborn babies for SMA has yet to commence, despite the National Screening Committee having indicated in 2023 and in 2025 that an evaluation should be undertaken.

“Early diagnosis of SMA for babies is vital in ensuring that effective treatments can be provided and lead to better outcomes. As I am sure you are aware, SMA is often diagnosed far too late and the disability cannot be reversed once nerve damage has occurred, leading to life limiting conditions developing.

“Could you please indicate when an evaluation into the expansion of SMA testing will take place and why there has been such a severe delay in the NHS adopting this service since the National Screening Committee’s recommendations?”

Jesy Nelson’s story is strikingly similar to so many other parents of SMA babies. She has described how her babies slowly stopped kicking and moving their legs in the first weeks and months after they were born. They were eventually diagnosed with SMA at six months after numerous visits to the GP and healthcare visitors checking in on them. The NHS had repeatedly assured Jesy that the twins were fine.

Jesy set up an online petition on the Parliament which she launched in the Mirror on Friday, triggering an unprecedented response, reaching 100,000 signatures in just one day. The issue could now be debated in the House of Commons.

The UK National Screening Committee (UKNSC) first decided not to add SMA to the newborn screening programme in 2018 but since 2019 three major treatments have been made available on the NHS which can virtually eradicate the condition.

The plan for an NHS pilot means full screening rollout is unlikely before 2031 on the current schedule. However NHS Scotland has just decided to go ahead with newborn screening for SMA and will add it to their routine heel prick test from next month. Babies in Wales and Northern Ireland will not be screened under the current plan.

Experts insist there is enough evidence internationally to justify immediately rolling out SMA screening for all newborns. Health Secretary Wes Streeting has promised to ask the committee whether it would be feasible to expand the pilot so that all babies are screened for the condition.

Ms Moran continued: “I understand that concerns have been raised with regards to the limiting of testing to certain babies, meaning that around 160,000 babies will not be screened each year, risking an average of 11 SMA babies being diagnosed late each year.

“England is now an outlier amongst European counterparts for SMA screening not being widely available to all newborns. England should follow the example of NHS Scotland who have recently introduced the screening programme and implement the trial sooner rather than later.”