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

28th September 2021

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.

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.


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