Image source, Jesy Nelson / InstagramImage caption, Nelson made her comments in an emotional, seven-minute video; following a debate in Parliament on Monday
Music correspondentPublished13 minutes agoFormer Little Mix singer Jesy Nelson says she is "heartbroken" and "outraged" by MPs, following a debate about spinal muscular atrophy (SMA) testing in parliament.
The singer has been campaigning for newborn babies to be screened for the muscle-wasting disease after her twins, Ocean Jade and Story Monroe Nelson, were diagnosed with it.
Caught early, the condition is treatable. Without diagnosis, it can cause death within two years.
Scotland introduced screening in March; but a similar scheme for the UK will only have a limited roll-out.
Nelson expressed frustration after public health minister Sharon Hodgson defended the staggered launch, saying: "I cannot believe we are still debating this."
"You are basically telling me that if you live in a certain postcode, you're not as important," the singer said on Instagram, external. "It's outrageous."
Hodgson said that limited testing facilities were preventing a full roll-out of screening for SMA.
The BBC has contacted her and the Department of Health for a response to Nelson's comments.
'It makes no sense'Monday's parliamentary debate, external was prompted by a petition launched by Nelson, which attracted more than 150,000 signatures.
While it was announced that SMA screening would be introduced from October 2026 - three months earlier than initially planned - it will only be available to 72% of newborns in the UK.
Among the areas that will miss out are Bristol, Cambridge, Leeds, Liverpool, Oxford and Portsmouth.
Wales and Northern Ireland, which set their own health policies, have yet to announce screening programmes.
Nelson said the situation left too many children at risk.
"If it's safe enough for 72% of England to get this tested at birth, then why is it not good enough for the [other] 28%?" she asked.
"How do we justify that? How is that ethical? It makes no sense," she said.
Image caption, Sharon Hodgson MP said that limited testing facilities were preventing a full roll-out of screening for SMA in the UK
The staggered roll-out has been introduced under the advice of the UK National Screening Committee, external, which wants to evaluate the effectiveness of screening, and the cost of treatment to the NHS.
The trial will involve seven of the 13 testing laboratories available to the NHS in the UK.
Speaking in parliament, Hodgson said the remaining six laboratories "do not currently have the requisite equipment" for testing.
"If that changes, more labs could be included," she added.
Amanda Martin, MP for Portsmouth North, said she was "alarmed" that parents in her constituency would not have access to the tests.
"We need to ask the Government why babies born in Portsmouth matter less than babies born in other parts of the country?" she said during the debate.
Ruth Jones, MP for Newport West and Islwy, raised the fact that Ukraine had managed to begin newborn screening for SMA "during a war", and asked why the UK was falling behind.
In response to those questions, and others, Hodgson said: "Where we can go further and faster safely, I will push for that to be the case."
Image source, Ken McKay/ITV/ShutterstockImage caption, Nelson wants children to be tested for the disease as soon as possible, after being told her twins may never walk
Speaking about the debate, which she attended, Nelson said she was devastated that the issue wasn't being tackled with more urgency.
"I cannot tell you how heartbreaking it is to know that my children's lives could have looked completely different," she said, fighting back tears.
"They could have been walking by now. They didn't have to be on breathing machines.
"I have to give them medicine every four hours. I have to turn them every two hours, because they can't do that themselves. I have to make sure they're not choking... because this disease has affected their muscles with their swallowing.
"To know that there are people that are literally making this decision to make children suffer... I have no words."
The singer also recounted showing Hodgson a video after the debate, featuring two sisters living with SMA - one who received treatment, and one who did not.
"One is in a wheelchair, the other is running along, pulling her sister along," she said.
Nelson claimed Hodgson was surprised by the video, admitting she hadn't realised the full extent of early treatment's impact.
"How do we have the health minister standing up in parliament arguing why this should not be rolled out across the whole of England, when she doesn't even know how life-changing this treatment is?" Nelson asked.
The charity Muscular Dystrophy UK welcomed Monday's debate, saying it was "encouraging and moving to hear many MPs speaking passionately about SMA newborn screening".
However, it added: "We'll continue to push the UK government to roll out screening in every part of the UK. No more postcode lottery."
In 2021, a life-changing gene therapy drug called Zolgensma was approved by the NHS to treat babies with the disease.
According to SMA UK, the drug delivers a healthy copy of the affected gene to the body, but timing is critical because irreversible damage may have already occurred in the nervous system.
At present, screening for SMA is only carried out on those who have a sibling with the condition.
SMA UK wants the disease to be added to a blood spot test that already checks newborn babies for 10 rare, but serious conditions.
According to the charity, an estimated 47 babies were born with the condition in the UK in 2024, although about one in 40 people carry the altered gene that can cause the disease.
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