Youth Out Loud! spoke to young Disabled people and their families about their experiences accessing NHS and social care services. Listen to their insights and their thoughts for change.

Introduction

Youth Out Loud! (YOL!) discuss the key learnings from interviews and surveys completed with young people and the parents of young Disabled people; and what it is like to access NHS and social care services.

Interview 1: The gap between children and adult services

YOL! spoke to a young person diagnosed with hereditary spastic paraplegia and ataxia, here they explain about accessing specialist services, issues with dual diagnosis and transitioning from children to adult services and what it’s like to not be able to communicate using the full name of their disability.

Interview 2: What does it mean to have an intermittent disability?

YOL! met a parent whose son was born with club feet. They need regular operations, which leave them needing support for a brief period of time after each operation, but unable to access carers or help with parking.

Interview 3: Navigating the diagnosis process 

YOL! spoke with a parent about the diagnosis process they went through, getting to appointments with other family members and how the diagnosis of their daughter affects other parts of their life.

Interview 4: Transitioning to adult services

YOL! spoke with a parent about transitioning to adult services, losing a service, role of carers and more.