How Jesy Nelson’s SMA Campaign Helped Bring Newborn Screening Across England

A national programme was announced

On 16 July 2026, the UK government announced a national evaluation of newborn screening for spinal muscular atrophy, known as SMA, across England. The programme was scheduled to begin in October 2026 and expand during 2027. It uses the existing newborn blood spot test pathway to assess whether earlier identification can improve outcomes for babies with the condition.

The distinction matters. The announcement created a national evaluation programme rather than an immediate permanent addition to every newborn screening panel across the United Kingdom. The official statement described a phased approach in England, supported by NHS England and the National Institute for Health and Care Research.

Jesy’s role in the campaign

Jesy Nelson became one of the most visible public voices calling for faster newborn screening after her twin daughters were diagnosed with SMA type 1. She backed a public petition, spoke in interviews and documented the family’s experience in the Prime Video film Jesy Nelson: Life Changing.

The government announcement thanked Jesy for helping draw attention to the issue. It also recognised the work of families, clinicians, researchers and organisations including SMA UK. The change was the result of a wider campaign, not the work of one person alone.

Why early diagnosis matters

SMA is a rare genetic condition that can cause progressive muscle weakness. Public health bodies and campaigners have focused on newborn screening because treatment can begin before symptoms become advanced. The evaluation is designed to collect the evidence needed for a long-term screening decision.

For Jesy, the announcement was a milestone in a campaign that began with a deeply personal diagnosis. Her response framed it as a victory for families who had spent years asking for earlier testing, while keeping the emphasis on the next phase of implementation and research.