Spinal Muscular Atrophy (SMA) is a rare but serious genetic condition.

Lower motor neurons degenerate, causing muscle wasting (atrophy) and weakness. It may affect crawling and walking abilities, arm, hand, head, and neck movements, breathing, and swallowing. Early identification of SMA is critical. Early treatment makes a life-changing difference for babies with SMA, helping them access assessment, diagnosis and treatment as soon as possible to significantly improve outcomes, including life expectancy.

Health visitors are uniquely placed to observe early development, identify potential concerns, and ensure that babies are referred promptly for assessment. They are also among the first professionals to notice signs of developmental differences during routine contacts, or the first professional who families with concerns turn to. Worries about motor development expressed by families and carers should always be taken seriously

Health visiting teams do not diagnose SMA, but they play an important role in early identification. The iHV has worked with SMA UK to create a number of resources to support your practice.

iHV Resources

Good Practice Points:

GPP – Identifying, referring and supporting infants with Spinal Muscular Atrophy

iHV LEARN Programmes:

Spinal Muscular Atrophy (SMA)

The iHV has produced a comprehensive e-learning programme which is split into two short modules:

Module 1: Spotting SMA – Learning objectives:
- Define Spinal Muscular Atrophy (SMA)
- Understand the genetic cause of SMA
- Identify the key signs and symptoms in babies

Module 2: Taking action – Learning objectives:
- Recognise why early identification and referral are important
- Know when to take action and how
- Understand the importance of ongoing support for the family

Click here to access iHV LEARN.

Insights:

Spot the Signs. Change a Life: The important role of health visiting in early identification of SMA

This Insights Xtra Webinar aims to give you the confidence and knowledge to identify SMA early, understand current treatment options, and support babies, children, and families living with the condition.

Expert speakers include:

Portia Thorman — Head of Advocacy & Communication at SMA UK and parent of a child with SMA
Dr Mariacristina Scoto — Consultant Paediatric Neurologist, Great Ormond Street Hospital
Katie Danagher – Health Visitor Team Lead, 0-19 Children’s Public Health Service North Tyneside Council

External Resources:

SMA UK

SMA UK is committed to supporting everyone affected by SMA so that they have access to the best care, support and treatment and there will be no barriers preventing full inclusion in society. They do this by providing support, informing and advocating for families affected by SMA.
Specific areas which may be of use:
- An experienced Support Team which offers opportunities for families to link in with other families and adults in the strong and supportive SMA community when the time is right for them.
- SMA Care UK is specifically for healthcare professionals, it provides clinical recommendations which are evidence-based and consensus-based guidelines for SMA patient care in the UK, agreed by SMA Care UK working groups.
- They will, however, be linked with a treatment centre. Regional Neuromuscular Centres (RNMCs), this page lists the RNMCs for adults and children across the UK. Some offer specialist care as an RNMC, but don’t offer treatment.

Associated iHV Resources:

Also see the following iHV pages:

Motor development toolkit – available via iHV LEARN

Previous iHV Insights:
- The Generation Study: Genomics in action (26/02/2026)
- Improving the lives of babies and children with SEND (19/06/2025)
- Launch of the iHV Motor Development Toolkit (21/11/2024)
- Gross motor skills: discussing gross motor development in babies and young children (29/02/24)