Our CEO, Giles Lomax recently attended the NHS ConfedExpo, the UK’s leading health and care conference, dedicated to driving innovation and improving care for patients and the public.

Using powerful examples and real-world experiences from our community, alongside examples of innovative practice across the NHS, Giles challenged NHS leaders, patient organisations, and system partners to place health inequalities at the heart of policy development, service planning, and delivery. He spoke about the importance of designing services around the needs of patients and ensuring that every person living with SMA can access timely diagnosis, equitable treatment options, and high-quality care, regardless of their location.

The event also provided an opportunity for Giles to meet with NHS Chair, Penny Dash, to discuss the implementation of newborn screening (NBS) for SMA. The conversation highlighted how variation in access to screening programmes remains another example of the postcode lottery affecting families across the UK. Early diagnosis through newborn screening has the potential to transform outcomes for babies born with SMA, ensuring they can access treatment at the earliest possible opportunity and giving them the best chance for improved health outcomes.

As SMA UK continues to advocate for change, opportunities like NHS ConfedExpo are essential for ensuring that the voices and experiences of our community are heard by those shaping the future of health and care services. By working collaboratively with decision-makers, healthcare professionals, and partner organisations, we can continue to push for a more equitable healthcare system for everyone affected by SMA.