Brief

England to begin newborn SMA screening trial backed by Jesy Nelson campaign

The trial will assess how quickly infants with SMA are referred for specialist care before the UK National Screening Committee decides on permanent inclusion.

By Felo News Desk · Published Thu, 01 Oct 2026 07:01:36 GMT

From Thursday, newborn babies in England will be screened for spinal muscular atrophy (SMA) as part of a national trial, a move promoted by singer Jesy Nelson after her twin daughters were diagnosed.

What happened

The trial launches on Thursday across England, adding SMA to the existing newborn blood‑spot (heel‑prick) test that already checks for ten rare conditions. Government data estimate SMA affects about one in 10,000 babies in the UK, roughly 60‑70 newborns each year in England.

What the reports add

The Independent notes that the trial will gather practical evidence on how the screening works in practice, including the speed of specialist referrals, before the UK National Screening Committee considers making the test permanent. The Standard adds that early treatment for SMA works best before symptoms appear and that research suggests the programme could prevent around three early deaths and stop about two babies from developing severe disease each year.

What was said

Jesy Nelson, whose twins Ocean Jade and Story Monroe have SMA, has been the public face of the campaign, saying the condition means her children are unlikely ever to walk. The Independent reported her statement, and the Standard repeated her involvement in the campaign.

How it came about

Nelson’s advocacy follows the diagnosis of her twins, prompting a push to include SMA in the routine heel‑prick test. The trial aims to provide data for the UK National Screening Committee, which will decide whether to add SMA permanently to the newborn screening programme.

Key facts

Newborn screening for SMA begins in England on Thursday as a national trial. (independent.co.uk)
SMA affects about one in 10,000 babies in the UK, roughly 60‑70 newborns each year in England. (standard.co.uk)
The trial will collect evidence on referral speed and care outcomes before the UK National Screening Committee reviews permanent inclusion. (independent.co.uk)
Jesy Nelson is the public face of the campaign after her twins were diagnosed with SMA. (independent.co.uk)