Children are suffering painful and avoidable deaths because of a ‘political’ choice not to test newborns for more diseases, doctors claimed last night.
The NHS carries out ‘heel prick’ tests on babies of around five-days-old to check for 10 treatable conditions, including cystic fibrosis.
Yet by comparison those born in Italy are screened for 48 diseases and conditions, with 39 checks in Norway, 36 in Poland and 31 in the Netherlands.
Just this week, former Little Mix singer Jesy Nelson demanded the NHS expand the heel prick testing to check for spinal muscular atrophy, which her twin seven-month-old daughters have.
She suggested that because the youngsters received a late diagnosis of the rare muscle disease they will now ‘probably never walk’.
Now the Daily Mail can reveal the UK National Screening Committee, which advises ministers on disease testing, ruled against adding another muscular disease to the heel prick test at their latest meeting.
Members rejected calls from parents and medics to introduce checks for metachromatic leukodystrophy (MLD) even though effective treatment is available on the NHS if it is caught early enough – and tests cost around £1 each.
Last night, doctors and parents called on Wes Streeting to overrule the committee’s guidance and introduce the checks.
Jesy Nelson on This Morning demanding the NHS expand the heel prick testing to check for spinal muscular atrophy, which her twin seven-month old daughters have
Paediatric consultant Dr Simon Jones, a leading expert in metabolic diseases at St Mary’s Hospital and a professor at the University of Manchester, said: ‘I’ve seen children who received treatment grow up healthy – and I’ve watched others deteriorate and die because they were diagnosed just weeks too late.
‘This is no longer a medical decision, it’s a political choice.’
The UK NSC held its last meeting in November and published its decision to advise against screening for MLD on Thursday, based on cost-effectiveness and the amount of evidence available.
Unless Wes Streeting intervenes they will not review the evidence again until 2029/30 – condemning more families to face watching their youngsters die.
MLD is a devastating, degenerative disease affecting one in 40,000 babies with the majority of children dying before their fifth birthday, gradually robbing them of the ability to walk, talk and see.
A life-saving gene therapy has been available on the NHS since 2022, however, only six of the 36 children born with it since then have been diagnosed in time to receive that treatment.
The NSC suggested instead that MLD testing be considered for a limited trial, with a different approval process, which experts fear could delay diagnoses and evidence gathering for decades.
Dr Jones added: ‘This is absolutely heartbreaking for the families impacted by MLD right across the country.
Paediatric consultant Dr Simon Jones: ‘I’ve seen children who received treatment grow up healthy – and I’ve watched others deteriorate and die because they were diagnosed just weeks too late. This is no longer a medical decision, it’s a political choice’
‘Metachromatic leukodystrophy destroys children’s lives, but again the committee has refused to add it to newborn screening, even though treatment only works if babies are caught before symptoms appear.
‘Ministers need to stop the endless reviews and act to prevent more needless deaths.
‘No parent should have to bury their child because the Department of Health is still making up its mind about a test that could have saved them.’
Only one condition has been added to the UK newborn screening programme since 2015.
Leah Scott, 37, from Norwich, whose daughter died of MLD at age five and twin boys Oscar and Phelix, ten, were saved after receiving treatment for MLD, said: ‘We have treatment available through the NHS, and we have the ability to screen for MLD.
‘Children are dying who did not need to die.
‘While America acts to save lives, Britain’s politicians are choosing bureaucracy over our babies.
‘We’re not asking Britain to be world-leading. We’re begging it to simply not be last.
Nala Shaw, 6, with Ally Wallace, 35, and Teddi Shaw, 4. Amy’s daughter was the first to be treated with Libmeldy on the NHS
Ally Wallace said: ‘If the decision is not taken to screen kids, more families will have to suffer every single day knowing that if they lived in Norway, or America, their child would be playing with their friends, not condemned to death’
‘When the Health Secretary published his ten-year NHS plan promising “prevention first”, was this what he meant? Prevent screening so children die faster?’
She added: ‘Wes Streeting could end this misery, save lives and give families hope today by simply overruling this awful, illogical recommendation that puts bureaucracy before children’s lives.’
Michelle Keyte, 44, from Lincoln, has a nine-year-old daughter, Penelope, who was diagnosed with MLD in time to receive treatment but her 14-year-old son Lucas was diagnosed too late.
She said: ‘Wes Streeting can save these children with a single signature.
‘I couldn’t look in the mirror knowing I had the power to stop children dying, but chose not to use it. I hope Mr Streeting feels the same.
‘The hypocrisy is breathtaking. He writes glossy documents about preventing disease while his officials fail to take practical and real steps to do just that.
‘Mr Streeting needs to take action, approve the inclusion of MLD into the newborn screening programme and then turn this system around.’
Ally Wallace, 35, from Shilbottle, whose daughter Teddi, now four, was the first to be treated with Libmeldy on the NHS, said: ‘If the decision is not taken to screen kids, more families will have to suffer every single day knowing that if they lived in Norway, or America, their child would be playing with their friends, not condemned to death.’
Shaun Scott, 40, with Leah Scott, 37, Oscar Scott, 10, Phelix Scott, 10, and Aiden Scott, 4. Leah’s daughter died of MLD at age five and her boys Oscar and Phelix were saved after receiving treatment for MLD
Michelle Keyte, 44, with Lucas Keyte, 14, and Penelope Keyte, 9. Michelle said: ‘Wes Streeting can save these children with a single signature’
Her other daughter, Nala, six, was diagnosed too late for treatment, with Ally adding: ‘My daughter lost everything – her mobility, her speech, her future – all because no one tested her at birth.’
