Jesy Nelson has heralded an “amazing” announcement that the NHS will start testing newborns for a devastating muscle wasting disease.
Health Secretary Wes Streeting has brought forward plans to screen over 400,000 babies in England for spinal muscular atrophy (SMA).
Former Little Mix singer Jesy Nelson had raised awareness of how late diagnosis of her own ten-month-old twins meant they began treatment too late after irreversible nerve damage was done. She has been told they will never walk.
The Mirror is campaigning for all newborn babies to be tested for SMA so they can be given new treatments which are effectively a cure – if administered at birth.
READ MORE: SMA Urgent ‘act now’ plea to save more babies from disability for just £5READ MORE: NHS rolls out Jesy Nelson SMA baby checks for muscle wasting disease in Mirror win
Former Little Mix singer Jesy has been lobbying Mr Streeting for newborn screening but admitted the historic announcement was “bittersweet”.
She said: “This is massive. Now there are potentially 404,000 babies who will be screened over the next 12 months. I just wish this had been here for my babies and for all the SMA babies who never got tested. That’s why I wanted to do this – I don’t want anyone to have to go through this heartbreak.”
The UK National Screening Committee had refused to roll out the £5 SMA blood test out on the NHS since 2018 but Jesy and the Mirror demanded change after she spoke out about the late diagnosis of her twin girls Ocean and Story.
An NHS pilot testing most newborn in England at birth had been delayed for years but Mr Streeting intervened after meeting Jesy so that its start date has been brought forward from January 2027 to October this year.
The pilot will see an estimated 404,000 babies tested in a phased rollout in England but 163,000 newborns will remain untested so they can act as a control group to compare outcomes – a situation experts have branded “unethical”. It means an estimated 11 babies a year will still be diagnosed too late.
Jesy told the Mirror: “It’s just bittersweet because we’re not fully there yet. It’s like literally a postcode lottery because it’s not the whole of England. There’ll be 163,000 babies that won’t get screened – and that is a lot of babies. If you live in a certain part of the country you’re not going to get tested.
“There are truly life changing treatments out there so no baby should be an experiment – showing what the difference is. This shouldn’t even be a thing. All babies should be getting tested and all babies should be living.”
The news was confirmed to charity SMA UK at a meeting with Mr Streeting at 1pm yesterday. It was attended by its chief executive Giles Lomax, whose seven-year-old twins Finn and Zara have SMA. Giles told the Mirror: “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. A huge thank you is also due to The Mirror for raising the profile and awareness of SMA.”
Giles and his wife Becky, from Edinburgh, received the devastating diagnosis of the Type 2 form of the disease only after they were 15 months old. Giles, 38, took over as chief executive of the charity SMA UK, which has now been around for 40 years, campaigning for research and supporting families affected by the disease. Giles added: “SMA UK will continue to work hard to ensure this test 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.”
In a letter to Jesy and Giles, Mr Streeting said: “It was great to meet you both. I really appreciated you sharing your personal experiences of raising children with SMA and applaud the work you have both done highlighting the issue and seeking earlier diagnosis.”
The devolved government in Scotland has taken the decision to start screening all babies for SMA. No such decision has been made in Wales and Northern Ireland where all 47,000 newborns will remain untested annually. Mr Streeting continued: “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.”
When a couple have a baby with SMA, any children they have after are entitled to a test for the condition while in the womb. If positive they are treated immediately and often have no symptoms. Jesy told of meeting such families and seeing the difference early treatment has on subsequent offspring. She said: “It’s life changing when you see it. You can’t even see that they have any symptoms of SMA.
“So that was really tough for me, it just made me think… if this gets rolled out in England this is now what all future SMA babies will look like now. They won’t look like my girls. They won’t be in a wheelchair. You know, it’s just sad but it’s also an amazing day.” Jesy added: “The support of the Mirror has been amazing. Without you guys as well there wouldn’t be as much awareness about SMA.”
The Mirror has been highlighting the SMA testing scandal since 2021. On average 48 SMA babies a year are given the devastating late diagnosis after irreversible disability has occurred. Of these 28 have the most severe SMA Type 1. We told the story of Edward Hall who was diagnosed at eight weeks old after he started choking during a car journey after the muscles that allowed him to swallow had wasted away.
We also spoke to Stephanie Tanner-Boyer who first noticed baby Freddie was less mobile than peers when he was six months. This was initially dismissed by the NHS but by 12 months Freddie was diagnosed with SMA. Due to the family history, younger brother Louis was tested for SMA in the womb. He was positive and so immediately received gene therapy, preventing irreversible nerve damage and any lasting symptoms.
We also spoke to the family of Ollie Williams who was diagnosed at three months old and left needing a feeding tube into his stomach and oxygen machine at night. Ollie’s dad, Ben Williams, told the Mirror: “Any improvement in newborn screening for SMA is positive and very welcome. However, it’s important to be clear about what this announcement actually changes. It is still an evaluation rather than a national roll‑out. For families in Wales and Northern Ireland and parts of England, there is still no screening at all.”
What is spinal muscular atrophy?
SMA patients have a fault with their SMN1 gene, meaning it does not stimulate SMN protein production.
The protein maintains the health of the nerve cells helping transmit signals between the brain and spinal cord and the muscles. Without it these nerve cells, called motor neurons, die off and so the muscles — particularly in the legs, chest and arms — do not get the message to move, and waste away.
What can be done if babies are diagnosed?
There are now three treatments that stop the disease progressing currently approved on the NHS. The first Nusinersen, which has a brand name Spinraza, is injected directly into the spinal chord every four months, and encourages the body to produce more SMN protein.
Evrysdi is taken as a liquid every day for life to increase the production of the SMN protein. Zolgensma, a one-off infusion, carries a healthy copy of the SMN1 gene to the brain and nerve cells, where it delivers the SMN protein. However these treatments are usually administered too late and cannot reverse disability once nerve damage has been done.
What is the heel prick test?
For the Newborn Blood Spot Test, fiveday-old babies have their heel pricked to collect four drops of blood on a special card. The UK only checks for ten out of a potential 50 serious health conditions such as cystic fibrosis.
This compares to 48 in Italy, 31 in Austria and 29 in Poland and Portugal. There is a check for SMA in 65% of EU countries including Poland. Ukraine has even introduced SMA to its newborn screening at a time of war.
The UK is a global outlier in relation to newborn SMA screening which is currently in place in 45 countries including the US and nearly three-quarters of Europe, including countries such as Russia, Turkey and it has even been introduced since the outbreak of war in Ukraine.
Why the delay to newborn testing?
The UK National Screening Committee first decided not to add SMA to the newborn screening programme in 2018. But since 2019 three major treatments have been made available on the NHS, including pioneering gene therapies which can virtually eradicate the condition if administered from birth. A lot of evidence from all over the world accumulated to demonstrate the benefit of early treatment so that newborn SMA checks take place in most developed countries.
Despite this, the committee decided in 2023 that further studies were required. Instead of making a recommendation for screening the NSC insisted that it needed an “in-service evaluation” – effectively a large NHS pilot study.
The NSC reconsidered whether an In Service Evaluation (ISE) was needed in June 2025 and decided it was. Medics treating babies with the life-limiting complications caused by SMA do not understand why the committee has not approved national screening.
The current ISE in England is being funded by the National Institute for Health and Care Research (NIHR). A spokesperson said: “The NIHR is funding a large study to evaluate newborn screening for SMA.
“Its potential impact will be to demonstrate whether newborn screening for SMA can be delivered effectively through the NHS, accurately and quickly identify affected babies, enable earlier treatment than diagnosis after symptoms appear, and provide robust evidence to inform a national decision on introducing SMA screening.”
