Ex-Little Mix singer Jesy Nelson met Wes Streeting in Parliament to demand newborn screening for spinal muscular atrophy (SMA) after her twins were diagnosed late
Jesy Nelson has asked Health Secretary Wes Streeting why it has taken her case before a devastating muscle wasting disease has “started to be taken seriously”.
Former Little Mix singer Jesy met Mr Streeting to demand he rolls out newborn screening for the muscle wasting disease which her twin babies have. The devastating diagnosis of spinal muscular atrophy (SMA) which means she has been told by medics her children will likely never walk.
The Mirror is campaigning for a simple £5 check for SMA to be added to the NHS newborn heel prick test – so babies can be treated and effectively cured before irreversible nerve damage is done in the first weeks of life. Most developed nations already test for SMA at birth.
In a meeting filmed by ITV’s This Morning, Jesy said: “Why did it have to take me to come along with a platform for people to take this seriously?”
Mr Streeting responded: “That is a fair question and my inbox has been full of families in a similar position. People are so grateful to you.”
READ MORE: Jesy Nelson’s bravery praised by Wes Streeting as star campaigns for newborn testREAD MORE: NHS newborn test to stop kids being left disabled is ‘no brainer’, expert proves
Mr Streeting continued: “I wasn’t aware of how the testing has come on leaps and bounds and I appreciate people watching this will be like ‘what the hell, you are the Health Secretary’.
Jesy asked him: “After today what do you feel are the next steps?”
Mr Streeting replied acknowledging that she has been “like a dog with a bone” highlighting the issue and said he was “hopeful” because an NHS evaluation study looking at screening was “set up and designed” ready to start.
Jesy was joined by the charity SMA UK in her meeting with Mr Streeting where they stressed the devastating consequences of a late diagnosis. Part of the meeting was filmed and will be aired on ITV ’s This Morning on Tuesday.
Pharmaceutical firm Novartis estimated 33 UK babies every year are left in a wheelchair because they are being diagnosed too late.
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. At least 16 children born with SMA since 2019 have died.
The committee has decided more research is needed and it is preparing an NHS pilot so children in some areas of England will be screened but not others so it can compare outcomes for children. It means screening rollout is unlikely before 2031. However NHS Scotland has just decided to go ahead with newborn screening for SMA and will add it to their routine heel prick test from the spring.
Giles Lomax, chief executive of charity SMA UK, who met Mr Streeting with Jesy, told This Morning: “This is not acceptable. There is a solution available and we can really change the future of anyone diagnosed with SMA going forward.”
READ MORE: ‘Our son can’t breathe or sit without support – NHS test delays are costing lives’
In a statement released after the meeting on Monday, Mr Streeting said it was a “privilege” to meet ex-Little Mix star Jesy Nelson and praised the singer for sharing her personal experience. He said: “It was a privilege to meet Jesy and hear first-hand about her family’s experience. It takes real bravery to share something so personal, and I have no doubt that by doing so she’ll give hope and reassurance to other families facing the same fears.”
He added: “Jesy made a powerful case for doing more on screening, and she’s given us a lot to think about. We are making progress. The UK National Screening Committee has recommended a large-scale study into newborn screening for SMA and as part of a trial in the NHS, hundreds of thousands of babies will be screened for SMA.
“There are now more treatments available for spinal muscular atrophy than ever before, and we are seeing children with SMA not just surviving but thriving.”
Zolgensma is a one-off gene therapy which saves a baby’s ability to sit, crawl, walk as well as to breath and eat unaided. It was made available on the NHS in 2021 and is effectively a cure if administered before muscle neurons have died off in the first weeks and months after birth.
The infusion, manufactured by Novartis, targets SMA’s genetic root cause by replacing the function of the missing or non-working SMN1 gene with a new, working copy of the gene.
Rob Hastings, chief medical officer at Novartis UK, said: “We would like to express our sympathy to Jesy and her family and praise her for bravely sharing her children’s experience with SMA. We strongly urge the Government to expand newborn screening for SMA across the UK, to bring us in line with the majority of countries in Europe where SMA is routinely screened for at birth.”
When diagnosed late, SMA children with the more severe Type 1 form typically require a wheelchair, breathing support, are fed through a pipe directly into their stomach and need a nurse at their bedside overnight to check they don’t stop breathing.
READ MORE: Wes Streeting praises Mirror campaign demanding baby test after Jesy Nelson heartbreak
First time mum Jesy previously told ITV’s This Morning that she will “never accept” that “we could have saved their legs” before her twins were diagnosed. She said: “If these were the cards I was always going to be dealt and there was nothing I could do about it then it’s almost easier to accept.
“But when you know there is something that could be done about it and it is life changing for your child, that’s the part that I cannot accept.
“That’s what’s alarming, when you have healthcare visitors coming round and they are saying ‘they’re fine, they’re doing really well’. It took my mum to say: ‘They don’t move their legs how they should be moving.’
“Every day I would start to see it gradually less and less. And it makes me so sad when I watch back the videos now. They are moving their legs, then in week two and three it gets less and less and then after a month it just stops.
“That’s how quick it is – and that’s why it is so vital to get treatment from birth… it stops any of the muscles that are still working from dying but any that have gone, you can’t regain them back.”
It follows reports Jesy has split with fiance Zion Foster, who is the father of twins Ocean Jade and Story Monroe.