Former Little Mix star Jesy Nelson has said she is “proud” of having reached a “major milestone” as a rollout of screenings for spinal muscular atrophy (SMA) is to begin earlier than expected.
The singer, 34, campaigned for all newborn babies to be screened for SMA after her twins, Ocean Jade and Story Monroe Nelson, were diagnosed with the rare condition, which causes progressive muscle wastage.
In a letter addressed to Nelson and Giles Lomax, the chief executive of the charity SMA UK, health secretary Wes Streeting confirmed that screenings will be rolled out earlier than planned and begin as part of in-screening evaluations (ISE) from October 2026 instead of January 2027.
According to the UK National Screening Committee government website, ISE is used to test proposed new screening programmes or changes to existing programmes before being adopted nationally.
Mr Streeting said: “My officials are still working through the challenges related to extending the ISE to the whole of England and I will keep you both updated of progress in this area. As you know, I’d like to see a full rollout. Scottish officials are working with the UK NSC to ensure that findings from this pilot can be shared, too.”
It comes after the singer met with Mr Streeting earlier this year to speak about the life-changing impact early detection of the condition could have had on her twins.
She has since been campaigning for screenings at birth and launched a petition for it to be 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 a patron of SMA UK, celebrated the news in a post on her Instagram story, which she described as a “big step forward”.
She said: “ISE have announced to start screening for SMA in England will now begin in October 2026. I am so proud, as this is a major milestone for the SMA Community.”
The singer announced in January that her daughters’ diagnosis would mean they are unlikely to ever be able to walk or regain their neck strength.
Early treatment can help prevent some of the most devastating consequences of the condition.
Nelson’s twins have since had a one-off infusion that puts a missing gene back into their bodies to stop other muscles from dying, however, they will not be able to regain any muscles that have already died.
In a statement shared on the charity website, Mr Lomax added: “Following years of campaigning, we are delighted to see the formal announcement that screening for SMA will start in six months’ time in England. This milestone will change the lives of so many diagnosed through the heel prick test.
“We will continue to work hard to ensure this SMA is rolled out to other parts of England as well as the home nations, no baby should be left behind based on where they live.”
