Tags: newborn screening

National screening for SMA at birth to be rolled out across England

  • National newborn screening programme for Spinal Muscular Atrophy (SMA) to be rolled out
  • England-wide initiative will give clinicians a better chance of spotting SMA in babies before symptoms appear
  • Early diagnosis of the disease can allow babies to live full and healthy lives

The Institute of Health Visiting (iHV) welcomes the government’s announcement that all babies across England will be tested for a rare but serious genetic condition from birth, giving them the best chance of successful treatment before symptoms appear.

The government will expand newborn screening for Spinal Muscular Atrophy (SMA) throughout the country as part of an evaluation programme. It will begin later this year and hundreds of thousands of babies will be screened thanks to the expansion of the scheme.

SMA can leave babies unable to sit up, crawl or walk. In the most severe cases, it stops them breathing or swallowing but, caught early enough, treatment can significantly improve outcomes for affected children.

Testing works through a simple heel prick to collect a small sample of blood from the baby, taken shortly after birth.

Secretary of State for Health and Social Care, James Murray, said:

“No parent should have to watch their child lose the ability to move or breathe, knowing that earlier treatment could have made all the difference.

“I’m in awe of the campaigners who’ve worked tirelessly to raise awareness of this rare but very serious genetic condition. We’re moving faster and rolling screening out more widely to ensure children get the best treatment from the earliest possible moment.”

The SMA screening evaluation will begin across England in the autumn, and the programme is moving faster than originally planned. Labs are set to start testing babies for SMA from October 2026 – three months ahead of schedule – after the government committed to speeding up the rollout earlier this year.

The Department of Health and Social Care will seek investment to fund the rollout.

A similar programme has already been established in Scotland drawing on funding from the private sector, and the Department of Health and Social Care will look to take a comparable approach in England, working collaboratively with partners to deliver the rollout ahead of schedule.

Campaigner Jesy Nelson said:

“Today is a day of hope. Knowing that future families will have access to early diagnosis and the opportunity for the best possible outcomes is something I’m incredibly proud to have supported. This is a victory for every family affected by SMA, whilst it can’t change the future of our children, I know it marks the beginning of a brighter future for future SMA families.”

Through the National Institute for Health and Care Research (NIHR), the government has already announced funding for a £4.1 million evaluation to assess the feasibility and effectiveness of adding SMA to the heel-prick blood test given to newborns as standard.

This study, led by scientists at the University of Oxford, will inform future UK National Screening Committee recommendations on SMA screening for newborns.

Vicky Gilroy, iHV Director of Innovation and Research, said:

“iHV is delighted that this essential screening will now be offered to newborn babies across England. Every baby deserves the best possible start in life, and early screening alongside timely access to treatment will make a significant difference for babies born with spinal muscular atrophy (SMA). This is a hugely positive step that will help ensure affected children receive the earliest possible support and care.”

As a universal preventative public health service, health visiting is uniquely placed to support families to understand complex genomic information, navigate pathways, and access early intervention services and appropriate treatment – this can make a life-changing difference.

Early identification and intervention is vital for all babies and young children with motor development conditions – and the iHV will keep calling for equitable service provision across the UK.

iHV has a great range of resources contained in our:

Parents of newborn babies not aware of consequences of screening

A team of University of Manchester researchers have found that changes are urgently needed in how parents are informed about newborn bloodspot screening to ensure they understand it and its consequences for them and their baby.

The research, funded by the National Institute for Health Research, suggests changes could be made which would not only ensure parents are better informed, but which could be more cost-effective than current practice.

Newborn screening is seen as one of the top public health advances of the developed world.

A blood sample taken soon after birth enables nine serious conditions such as cystic fibrosis and sickle cell to be diagnosed within the first weeks of life, meaning that treatment and care can start immediately.

However, the information that has to be presented before screening is complex – relating to nine rare but very serious conditions.

Dr Cheryll Adams CBE, executive director iHV, commented on the research:

“This is very interesting research, but I can’t help but wonder whether it might have been helpful for the researchers to have considered the potential health visitor role in this as part of their antenatal visit.  That contact is timely being close to the birth and it could become part of a package of important information such as the immunisation programme which is discussed by the health visitor.”

Read full Manchester University press release