SMS community survey results

What our community told us

Earlier this year, The SMS Foundation UK invited families and carers in our community to share their experiences of living with Smith-Magenis syndrome (SMS), the challenges they face, and the support they are able to access.

We received responses from 66 families, providing us with valuable insight into the realities of supporting someone with SMS.

The findings highlight many of the issues we regularly hear about through our work with families. 85% of respondents reported behaviours that challenge and 88% reported sleep difficulties, alongside significant challenges around accessing respite, mental health support and services with an appropriate understanding of SMS and learning disability.

The survey also gives us a clearer picture of where families feel well supported and, importantly, where gaps remain.

These findings will help inform the Foundation’s priorities and services, while also providing valuable evidence that we can use when working with professionals, researchers, service providers and policy makers to advocate for better understanding and support for people with SMS and their families.

We are incredibly grateful to everyone who took the time to complete the survey and share their experiences with us.