Over the past few weeks, we have submitted responses to two important government consultations focused on education and support for children and young people with complex medical and additional needs.
These included:
SEND Reform Consultation Putting Children and Young People First
Supporting Children and Young People with Medical Conditions at School
Both responses were shaped by the experiences, insights and priorities shared by our members through the SEND survey we circulated last month.
We want to say a huge thank you to everyone who took the time to complete the survey and share their experiences.
Your input strengthened our ability to speak with evidence and real-world insight about the challenges families are facing.
Across both consultations, we highlighted issues our community consistently tells us about, including:
delays and inconsistencies in support
lack of understanding of rare and progressive conditions in education settings
poor coordination between services
the emotional and practical impact on families
the need for flexible, needs-led educational provision
the importance of recognising parental expertise and involving families in decision-making
Importantly, we were able to ensure that the voices of families affected by MPS, Fabry and related conditions were represented in national discussions about future policy and guidance.
This is a really important part of what the MPS Society does as a patient organisation. Rare conditions are often overlooked in wider policy conversations and without direct representation there is a risk that the needs of our community are missed entirely.
By responding to consultations like these, we can help ensure decision-makers hear directly about the realities families are facing.
Our responses also reinforced something we strongly believe: meaningful change only happens when the lived experiences of patients and families help shape policy.
Thank you again to everyone who contributed. Your experiences, expertise and willingness to speak up continue to make a real difference.
Read our responses
