Documents reveals shocking human cost of delaying NHS screening all babies for spinal muscular atrophy (SMA) meaning 30 a year will never walk
Jesy Nelson has posted pictures of the support her twins need due to their SMA(Image: ITV)
Three children will die every year while the NHS waits to roll out a blood test for a muscle wasting disease, modelling shows.
The Mirror has seen documents that reveal the shocking human cost of delaying screening all babies for spinal muscular atrophy (SMA). We are campaigning for the £5 check for SMA to be added to the NHS newborn heel prick test which already checks for 10 other conditions, including cystic fibrosis.
Most European nations and the US already check for SMA, so babies can be given drugs which are effectively a cure if administered soon after birth – before muscle neurons have died off. If this diagnosis is delayed, even by a few months, it can mean SMA babies will never walk and in more severe cases will need a machine to help them breath and will need to be fed via a pipe directly into their stomach.
Pop star Jesy Nelson, whose twins have been diagnosed with SMA, is leading calls for newborn screening(Image: jesynelson/Instagram)
READ MORE: Jesy Nelson grilling Wes Streeting means babies could be tested for SMA in huge victoryREAD MORE: ‘Don’t let us down Wes Streeting – your decision on SMA will change children’s lives’
The UK National Screening Committee has delayed recommending a newborn SMA test since life-changing treatments became available in 2019, resulting in dozens of babies being left needlessly disabled each year.
The Mirror can reveal that modelling, seen by the committee, shows that every year screening is delayed results in three babies dying.
The modelling by Sheffield Centre for Health and Related Research (SCHARR) also showed it also results in two more babies growing up needing a machine to help them breath because the muscles in their lungs and wind pipe have wasted away.
The delayed diagnosis due to lack of screening also means 30 SMA babies grow up never being able to walk and confined to a sitting position.
Crucially, the documents seen by the Mirror show that the £6.7million cost of screening all newborns for SMA would be “offset by the long-term cost savings due to lower health care costs”.
Giles Lomax, chief executive of charity SMA UK, said: “The SCHARR model found that implementing screening could result in better outcomes and lower costs compared to the current approach of no screening.
“These results are even more amazing when you look at what was not counted. The study only looked at the money spent by hospitals and doctors. It didn’t include the ‘hidden’ costs.
The Mirror is campaigning for all UK babies to be screened for SMA(Image: )
“This includes expensive pieces of equipment like wheelchairs and breathing machines, or changing their homes to add ramps. It also doesn’t count the money a parent loses when they have to quit their job to stay home and take care of their child.”
Many SMA babies with the more severe Type 1 form can require a nurse remaining at the bedside all night to check they don’t stop breathing. They can also need one or two nurses to accompany them at school.
Then there is the cost to the NHS of repeat hospital admissions when they get common infections like a cold.
Health Secretary Wes Streeting said he has “asked his team” whether a planned NHS pilot to screen some newborns for SMA could be expanded to that all get the blood check as part of the routine NHS heel prick test. The pilot is not due to start until next year at the earliest.
Current plans are for one third of newborns – around 163,000 a year – not to be tested so they can act as the “control group” to compare outcomes with to see how effective newborn screening for SMA is – a decision experts have branded “unethical”.
The possible shift in the Government’s position comes after Mr Streeting met former Little Mix singer Jesy Nelson, whose twin babies have been diagnosed with SMA Type 1 and have been told they will never walk.
The key modelling seen by the Mirror found that newborn screening also enables about 37 more babies with SMA to live a broadly normal life.
However it also estimated that screening for SMA with the current blood test, which is 99.9% accurate, would diagnose and treat three babies for less severe forms of the condition which would not have affected them until adulthood. In these cases, being treated “may be detrimental to their health and wellbeing”.
Earlier this week, Mr Streeting told the Mirror: “Jesy and other campaigners have made a powerful case for doing more on screening and there is some good news on this.
“Planning for a large-scale trial across the NHS is underway, where hundreds of thousands of babies for SMA will be screened from next year to help build the evidence base needed to support a national screening programme.
“I have asked my team to look at whether this evaluation can start sooner, and whether it can be expanded to involve all babies, rather than two thirds as currently planned and will be reporting back to the SMA community on this.”