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 families turn to when they have concerns. 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 and Parent Tips
Developed in collaboration with topic experts, health visitors, and other professionals, our resources draw on the latest available evidence at the time of publication. Each resource is produced through a robust quality assurance process and peer reviewed to ensure accuracy, relevance, and strong alignment with health visiting practice.
Identifying, referring and supporting infants with Spinal Muscular Atrophy
Good Practice Point
🔎 iHV LEARN Programmes:
We offer a range of e-learning and toolkits to support your practice via our learning platform iHV LEARN. Additional resources are available within courses for those who have completed the corresponding training programme.
The Motor Development Toolkit has been designed by leading experts to equip health visiting practitioners in the promotion and assessment of motor development with a range of short videos and resources to support the early identification of atypical motor development/‘red flags’. This toolkit is free to access for iHV members.
The iHV has produced a comprehensive SMA E-Learning programme which is split into two short modules. This e-learning is open to all.
18 June 2026 - iHV Insights Xtra: Spot the Signs. Change a Life: The important role of health visiting in early identification of SMA
Motor Development Programme
🏷️ Cost: From £240
🕒 Duration: 5 Hours
👥 Suitable for: Health Visitors and Skill Mix
Spotlight Learn Workshops
🏷️ Cost: On enquiry
🕒 Duration: 2.5 Hours
👥 Suitable for: Health Visitors, Skill Mix and Multi-agency
External Resources
- 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.
