Spinal muscular atrophy: education with impact

For spinal muscular atrophy (SMA) awareness month this August, we are excited to release our ‘education with impact’ report highlighting the workplace projects recently presented at our first ever SMA MasterClass. This year marks the first time we've supported workplace projects specifically for SMA services, and we were thrilled to see the diversity of topics and the collaborative efforts.

These projects, undertaken by the course delegates during their break between modules 1 and 2, reflect our ethos of transformational learning and showcase how education can drive meaningful change.

‘I was very pleased to see so many of the projects looking at increasing our understanding in order to improve the experiences of people with SMA. We have had specialist services looking to understand patient experiences which is so important. I think my highlight might be seeing the education to, and upskilling of, primary and community services, which is very close to my heart.’

Dr Vasantha Gowda, consultant paediatric neurologist

‘I've really enjoyed hearing about these projects and have particularly noticed the level of deliberate collaboration in so many of them. Several projects were carried out by two or more colleagues as a joint initiative, which really shares the work and embeds it firmly, whilst others have set out to work across specialities or disciplines - and this really elevates care and individuals' experience of it.’

Dr Min Ong, paediatric neurology consultant

Despite the highly specialised care required for SMA, many of these projects focus on ensuring comprehensive and coordinated care across the entire spectrum of life – addressing not only physical needs but also social, emotional and educational health. The involvement of various disciplines, from specialist to community services, emphasises the importance of holistic care.

From a neuro-respiratory clinic for young people to improved intravenous access for therapies, these projects demonstrate clear steps to improvement, tangible outcomes and transferable insights that can help transform SMA services across the UK. Congratulations again to Ushma Patel and Yvonne Julien for their winning project on recognition and early referral within primary care.

Be sure to explore the final section of the report, where we share top tips and actionable takeaways for other services. We hope these insights inspire and motivate healthcare professionals to improve services for people living with SMA and their families.