Newborn screening for spinal muscular atrophy to roll out in England from October
Jesy Nelson welcomed the rollout of newborn screening for spinal muscular atrophy in England, set to begin in October.
The Full Story
A plain summary built from the channels that reported this story.
Newborn screening for spinal muscular atrophy (SMA) will be rolled out in England from October, following a campaign by former Little Mix singer Jesy Nelson. Her twin daughters, Storey and Ocean, were diagnosed with the rare genetic condition last year. The screening will be added to the existing heel prick test, which is offered to all newborns at around five days old. Scotland already includes SMA in its newborn screening. England's programme will begin as a pilot study, with the aim of achieving nationwide coverage within 15 months. Wales and Northern Ireland do not yet have the laboratory equipment needed to carry out the test.
SMA causes progressive muscle weakness and can affect basic movements such as breathing and swallowing. In the most severe cases, it can be fatal before the age of two. Breakthrough drugs can now correct the defective gene responsible for the condition, but they must be given as soon as possible after birth to prevent irreversible damage. Early diagnosis is therefore critical. Jesy Nelson's daughters have received a life-changing drug that halts the progression of the disease, but they have already suffered some permanent harm and are unlikely to be able to walk.
The announcement has been welcomed by families and campaigners. One mother, Dharmesh, whose son Sebastian has the most severe form of SMA, said: "Every day counts, every minute counts." Another family featured in the coverage is that of Edward, who was diagnosed at eight weeks and received early treatment. His mother said: "Without early intervention and early treatment, the symptoms are far more severe." Around 50 cases of SMA are diagnosed each year in England. The new screening programme is expected to transform the outlook for children born with the condition. A panel of experts will later decide whether to make the screening permanent across the whole UK.
On screen
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Key Claims
Claims reported during this story's coverage, mapped by channel. Ordered by how many channels carried each claim.
| Claim | Channel 5 | BBC One | ITV |
|---|---|---|---|
| Jesy Nelson campaigned for early SMA testing after her twin daughters were diagnosed with the condition. | |||
| Newborn screening for spinal muscular atrophy (SMA) will be rolled out in England using a heel prick test, with full coverage expected by October 2026. | |||
| Scotland already includes SMA screening in its newborn blood spot test. | · | ||
| A child named Edward was diagnosed with SMA at eight weeks and received treatment before the condition worsened. | · | · | |
| Early treatment for SMA can correct the defective gene but must be given soon after birth. | · | · | |
| Jersey Nelson welcomed the rollout of SMA screening in England from October, after her twins were diagnosed with the condition. | · | · | |
| Wales and Northern Ireland do not yet have the lab equipment to carry out SMA screening. | · | · |
Channel Perspectives
What each channel focused on, with key quotes.
This channel gave a very brief, factual summary of the story, focusing on the key announcement and Jesy Nelson's role. It did not include any additional context, expert quotes, or details about the timeline or other regions. The tone was neutral and concise, typical of a news bulletin.
- “Former Little Mix star Jesy Nelson has welcomed screening for babies for a rare muscle wasting disease.”
- “Hundreds of thousands of newborns will now be screened as part of the simple heel prick test.”
This channel provided a more emotional and detailed report, including footage of Jesy Nelson's personal video diary and a quote from a campaigner. It highlighted the importance of early treatment and the fact that Scotland already screens. The tone was sympathetic but also informative, with a focus on the human impact and the medical breakthrough.
- “I can't believe this is happening.”
- “It's a massive moment, but we have to not lose sight of the fact that there are around 2,000 people living in the UK with SMA.”
This channel framed the story as a 'day of hope' and focused on the positive outcome for families like Edward's, who benefited from early diagnosis. It included a direct quote from Jesy Nelson expressing joy. The tone was uplifting and celebratory, with less emphasis on the challenges or delays.
- “Jesy Nelson has called today a day of hope.”
- “It's just the most incredible news for the whole of the SMA community, for future SMA babies.”
This channel provided the most critical and detailed analysis, questioning why it took a celebrity campaign to prompt action. It included a mother's frustration about delays and gave specific timelines for Scotland, England, Wales, and Northern Ireland. The tone was more investigative and slightly sceptical of the government's pace.
- “It shouldn't take a celebrity to reveal and bear her soul and her experience and her heartache and grief to become the catalyst.”
- “Every day counts, every minute counts.”
Broadcast Timeline
News broadcasts tracked for this story, in time order.