Jesy Nelson ‘proud’ as NHS announces rollout of SMA screening for newborns
Former Little Mix star Jesy Nelson said she was “proud” to have reached a “major milestone” that will see spinal muscular atrophy (SMA) screenings begin earlier than expected.
The 34-year-old singer launched a campaign for all newborn babies to be screened for SMA after her twins, Ocean Jade and Story Monroe Nelson, were diagnosed with the rare condition that causes progressive muscle wasting.
In a letter addressed to Nelson and Giles Lomax, chief executive of charity SMA UK, Health Minister Wes Streeting confirmed that screenings would start earlier than planned, starting from October 2026 rather than January 2027 as part of in-screening assessments (ISEs).
According to the UK National Screening Committee government website, the ISE is used to test proposed new screening programs or changes to existing programs before they are adopted nationally.
Mr Streeting said: “My officials are still working through the challenges of extending the ISE to the whole of the UK and I will keep you both informed of developments in this area.
“As you know, I would like to see a full rollout. The Scottish authorities are working with the UK NSC to ensure the findings from this pilot can also be shared.”
It comes after the singer met with Mr Streeting earlier this year to talk about the life-changing impact early diagnosis could have on her twins.
The singer has since been campaigning for screening at birth and started a petition to have it added to the newborn blood spot screening test, also known as the heel prick test, which screens for serious health conditions.
Nelson, who recently became boss of SMA UK, celebrated the news with a post on his Instagram story, which he described as a “huge step forward”.
“ISE announced that SMA screenings will start in October 2026 in the UK.
“I am very proud as this is a significant milestone for the SMA Community.”
The singer revealed in January that her daughters’ diagnosis would mean they would never be able to walk or regain their neck strength.
Early treatment can help prevent some of the condition’s most devastating consequences.
Nelson’s twins have since undergone a one-off infusion that puts a missing gene back into their bodies to stop other muscles from dying, but they will not be able to regrow muscles that have already died.
In a statement shared on the charity’s website, Mr Lomax added: “After years of campaigning, we are delighted to see the official announcement that SMA screening in England will begin within six months.
“This milestone will change the lives of many people diagnosed with a heel prick test.
“We will continue to work hard to ensure this SMA spreads to other parts of the UK and into their own countries, no baby should be left behind based on where they live.”
