Tags: SMA

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:

Nestlé and Danone formula milk recalls

Some infant formula products have recently been recalled. This is because they might contain a harmful toxin called cereulide, which causes food poisoning with symptoms of vomiting and diarrhoea.

The Food Standards Agency (FSA) has issued a series of food alerts since Monday 5 January 2026, detailing a range of di􀆯fferent formula milks contaminated with, or potentially contaminated with, the toxin cereulide.

The alerts are as follows:

  • 5 January: Nestlé recalls several SMA Infant Formula and Follow-On Formula as a precaution because of the possible presence of cereulide (toxin)
  • 9 January: Update 1 – Nestlé recalls several SMA Infant Formula and Follow-On Formula as a precaution because of the possible presence of cereulide (toxin)
  • 24 January: Danone recalls Aptamil First Infant Formula because cereulide (toxin) has been found in this batch
  • 3 February: Update 1 – Nestlé recalls several SMA Infant Formula and Follow-On Formula as a precaution because of the possible presence of cereulide (toxin)
  • 3 February: Update 2: Nestlé recalls several SMA Infant Formula and Follow-On Formula because of the presence of cereulide (toxin)
  • 4 February: Update 3: Nestlé recalls several SMA Infant Formula and Follow-On Formula because of the presence of cereulide (toxin)
  • 6 February: Danone recalls several Aptamil and Cow & Gate First Infant Milk and Follow on Milk formula products because of the possible presence of cereulide (toxin)

See this news page from the FSA which provides all the alerts on one webpage: Infant formula recalls | FSA.

Brands of Danone, Nestle and other manufacturers of formula milk are being recalled in many countries, not just the UK.

The concern is that certain batches of a range of di􀆯fferent types of Danone formula milks sold in the UK under the ‘Aptamil’ and ‘Cow & Gate’ brands, and certain batches of a range of di􀆯fferent types of Nestlé formula milks sold in the UK under the ‘SMA’ and ‘Little Steps’ brand names, are either known to be contaminated or may be contaminated with a toxin called cereulide which causes food poisoning.

The symptoms are nausea, vomiting, diarrhoea and abdominal cramps very shortly after consumption.

The FSA alerts list all of the aff􀆯ected formula milk products and the batch numbers and where these can be found on the product packaging.

First Steps Nutrition Trust information

First Steps Nutrition Trust has produced a leaflet with the latest updates on the recalled infant formula, as well as advice for parents and carers, and also advice for health professionals.

Download First Steps Nutrition Trust leaflet with full details of the product recalls

  • On the 2nd page of the document is a list of first infant formula products and brands that have not yet been affected by the recalls. (First Steps Nutrition Trust thought it may be helpful for people who have only used one brand to know what the other brand names are, when they are looking at the shops, or searching online, or however they access their formula, to know what names to look for.)
  • On pages 4-6 (the last 3 pages) is the consolidated list of all of the product names, brands, pack size, best before dates and batch numbers (where available) of recalled products – grouped according to product category, with first infant formulas listed first.

For more information, please contact Dr Vicky Sibson [email protected]

Please share this information with colleagues and others who are supporting formula feeding families.

The vital role of health visitors in supporting families with SMA type 1

Health visitors play a vital role in listening to and supporting parents or carers when they have health or developmental concerns about their children. Health visitors also play a vital role in observing and detecting the early signs of complex conditions and disabilities in infants and children.

They are well placed to observe infants who may have Spinal Muscular Atrophy Type 1 (SMA Type 1) for example, which, although is a rare condition, is incredibly important to spot early as this improves the outcomes for infants.

We are delighted to launch our new Good Practice Points (GPPs) on SMA Type 1. The aim of this GPP is to support health visitors to recognise the early and important signs and symptoms of SMA, and optimise on all their contacts with young infants and their families. Early recognition is important as it speeds up the diagnosis and treatment which can make a significant and life-changing difference to outcomes and prognosis.

There are 3 very specific symptoms to be aware of in infants and these are:

  • An infant who cannot raise their head when on their tummy
  • An infant who has floppy arms and legs
  • An infant who is not reaching for things.

Health visitors should look out for these signs when reviewing gross motor development in young babies, and refer to a GP for review and referral to a Paediatric Neurologist if an infant presents with any of these specific symptoms. There is more information on SMA Type 1 and the other types of SMA in the GPP.

Go to GPP - Identifying, referring and supporting infants with Spinal Muscular Atrophy – type 1

We are grateful to our authors and funders for writing this GPP to equip health visitors. It originated from the awareness by Paediatric Neurologists of the vital role that health visitors have in early detection of SMA and the difference that their intervention can make to a young infant. We are currently working with our authors and will involve parents in creating a resource for parents and carers on SMA.

Click here for more information about symptoms of SMA Type 1

Calling all health visitors: We invite you to find your inner warrior and share your stories on social media. How have you made a difference to babies, children and families? Support the #TurnOffTheTaps campaign and raise the profile of health visiting so every baby can get the best start in life. Together we are stronger. #InvestInHealthVisiting

Find out more about the #TurnOffTheTaps campaign