After Jesy Nelson speaks out, doctors say children are suffering avoidable deaths because of ‘political’ choice not to expand checks for babies

Children are suffering painful and avoidable deaths because of a ‘political’ choice not to further test newborn babies for diseases, doctors claimed last night.

The NHS carries out ‘heel prick’ tests on babies aged around five days old to check for 10 treatable conditions, including cystic fibrosis.

However, those born in Italy are screened for 48 diseases and conditions; of these, 39 are in Norway, 36 in Poland and 31 in the Netherlands.

Just this week, former Little Mix singer Jesy Nelson demanded the NHS expand heel prick testing to check for spinal muscular atrophy in her seven-month-old twin daughters.

He suggested that since the rare muscle disease was diagnosed late, young people will now ‘probably never walk’.

The Daily Mail can now reveal that the UK’s National Screening Committee, which advises ministers on testing for the disease, decided against adding another muscle disease to the heel prick test at its latest meeting.

Members have rejected calls from parents and medics to be checked for metachromatic leukodystrophy (MLD), even though effective treatment is available on the NHS if caught early enough and tests cost around £1 each.

Last night doctors and parents called on Wes Streeting to override the committee’s guidance and introduce the checks.

Consultant paediatrics Dr Peters, a leading expert on metabolic diseases at St Mary’s Hospital and professor at the University of Manchester. Simon Jones said: ‘I have seen children who received treatment grow up healthy and others deteriorated and died just because their diagnosis was made a few 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 on Thursday to recommend against MLD screening based on cost-effectiveness and the amount of available evidence.

Unless Wes Streeting intervenes, they won’t review the evidence again until 2029/30; This will condemn more families to face watching their young people die.

MLD is a devastating, degenerative disease that affects one in 40,000 babies; The majority of children die before their fifth birthday, gradually destroying their ability to walk, talk and see.

A life-saving gene therapy has been available on the NHS since 2022, but since then only six of 36 children born with it have been diagnosed in time to receive the treatment.

NSC instead recommended that the MLD test be evaluated for a limited trial with a different approval process; Experts fear this could delay diagnoses and evidence gathering for decades.

Dr Jones added: ‘This is an absolutely heartbreaking situation for families affected by MLD across the country.

Pediatric consultant Dr. Simon Jones: ‘I have seen children who receive treatment grow up healthy; I have seen others deteriorate and die because they were diagnosed just a few weeks too late. “This is no longer a medical decision, it is a political choice.”

‘Metachromatic leukodystrophy is devastating children’s lives, but the committee has again refused to include it in newborn screening, despite the treatment only working if babies are caught before symptoms appear.

‘Ministers need to stop endless investigations and take action to prevent further 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 save them.’

Only one condition has been added to the UK newborn screening program since 2015.

Leah Scott, 37, from Norwich, whose daughter died of MLD aged five and whose ten-year-old twin boys Oscar and Phelix were rescued after being treated for MLD, said: ‘We have treatment available through the NHS and we have the ability to screen for MLD.

‘Children who don’t need to die are dying.

‘While America steps up to save lives, Britain’s politicians choose bureaucracy over our babies.

‘We are not asking Britain to be a world leader. We beg you not to be the last.

With 6-year-old Nala Shaw, 35-year-old Ally Wallace, and 4-year-old Teddi Shaw. Amy’s daughter became the first person to be treated with Libmeldy on the NHS.

Ally Wallace said: ‘Unless the decision to screen children is made, more and more families will have to suffer knowing that if they lived in Norway or America their children would be playing with their friends rather than being sentenced to death.’

‘Is this what the Health Secretary meant when he published his ten-year NHS plan promising ‘prevention first’? Do you want to prevent screening so that children die faster?’

He added: ‘Wes Streeting can end this misery, save lives and give families hope today by simply rejecting this terrible, illogical advice that puts bureaucracy before children’s lives.’

Michelle Keyte, 44, from Lincoln, has a nine-year-old daughter called Penelope. His daughter was diagnosed with MLD in time for treatment, but his 14-year-old son Lucas was diagnosed too late.

He said: ‘Wes Streeting could save these children with one signature.

‘I couldn’t look in the mirror knowing I had the power to stop children dying but I chose not to use it. I hope Mr Streeting feels the same.

‘The hypocrisy is breathtaking. While he writes glossy documents aimed at preventing disease, his officials fail to take practical, real steps to do so.

‘Mr Streeting needs to take action, approve the inclusion of MLD in the newborn screening program and then reverse this system.’

Ally Wallace, 35, from Shilbottle, whose daughter Teddi, now four, was the first person to be treated with Libmeldy on the NHS, said: ‘Unless the decision is made to screen children, more families will have to suffer every day knowing that if they lived in Norway or America their children would be playing with their friends rather than being sentenced to death.’

Shaun Scott (40), Leah Scott (37), Oscar Scott (10), Phelix Scott (10) and Aiden Scott (4). Leah’s daughter died of MLD at the age of five, and her sons Oscar and Phelix were rescued after receiving treatment for MLD.

Michelle Keyte, 44, with Lucas Keyte, 14, and Penelope Keyte, 9. Michelle said: ‘Wes Streeting could save these children with one signature’

Her other daughter Nala, six, was diagnosed too late for treatment and Ally added: ‘My daughter lost everything – her mobility, her speech, her future – because no one tested her at birth.’