The chair of a significant parliamentary committee has expressed support for the Mirror’s initiative to conduct mandatory testing for a degenerative muscle disease in all infants.
Layla Moran MP, who leads the Health and Social Care Committee responsible for overseeing governmental health policies, has communicated with Health Secretary Wes Streeting regarding the absence of a £5 screening test for spinal muscular atrophy in the routine NHS newborn heel prick examination. Despite the availability of potentially curative treatments within the NHS for some time, this essential screening has not been incorporated.
The increased awareness of this rare disease was propelled by former Little Mix singer Jesy Nelson, who shared her twin daughters’ diagnosis and subsequent challenges. Unfortunately, due to delayed diagnosis and treatment, her daughters face permanent nerve damage preventing them from walking. Tragically, four additional infants each month are diagnosed with SMA under similar circumstances.
Moran emphasized, “I am reaching out following The Daily Mirror’s campaign advocating for universal spinal muscular atrophy (SMA) testing for newborns. Despite recommendations from the National Screening Committee in 2023 and 2025, the initiation of the evaluation process for screening newborns for SMA has not commenced as reported by the newspaper.
“Early detection of SMA in infants is critical for providing timely and effective interventions that can improve outcomes. SMA is often diagnosed too late, resulting in irreversible nerve damage and the development of life-altering conditions.
“Could you please clarify when the assessment for expanding SMA testing will take place and the reasons for the substantial delay in implementing this service within the NHS following the recommendations from the National Screening Committee?”
Jesy Nelson’s experience mirrors that of many other parents facing SMA diagnoses. She recounted how her infants progressively lost their ability to move their legs, leading to their SMA diagnosis at six months after multiple consultations with healthcare providers. Despite reassurances from NHS professionals, Jesy’s twins were eventually diagnosed with the condition.
Jesy initiated an online petition on Parliament, featured in the Mirror, which quickly garnered over 100,000 signatures within a day, potentially prompting a discussion in the House of Commons.
Although the UK National Screening Committee initially excluded SMA from the newborn screening program in 2018, three significant treatments have since been available within the NHS, offering significant relief from the condition.
While an NHS pilot project indicates a full screening rollout may not occur before 2031, NHS Scotland has taken the lead by incorporating SMA screening into their routine heel prick test starting next month. However, infants in Wales and Northern Ireland will not undergo screening based on the existing plan.
Experts argue that ample international evidence supports the immediate implementation of SMA screening for all newborns. Health Secretary Wes Streeting has committed to exploring the feasibility of expanding the pilot to encompass all infants for SMA screening.
Moran further added, “I acknowledge concerns raised regarding the limited scope of testing, potentially leaving around 160,000 infants untested annually, risking late
