For Neurodiversity Celebration Week, we are celebrating the voices and experiences that help shape the services we provide for children, young people and families.

One of those voices belongs to Katie Lidington, Patient Leader within Essex Children and Young People’s Services at NELFT, whose journey from service user to service leader is helping ensure lived experience sits at the heart of how services are designed and delivered.

Katie’s journey with health services began as a young person navigating mental health and neurodevelopmental services herself. Those early experiences gave her a unique perspective on the importance of being heard and understood within healthcare systems.

Katie chose to turn her experiences into something meaningful.

“Navigating services from a personal perspective gave me insight into what it feels like to be on the receiving end of care. That experience inspired me to become involved so I could help improve services for others.”

Katie first became an involvement representative, before volunteering as a Participation Worker within Essex Children’s Services, helping to develop participation groups and strengthen co-production with young people and families.

Her commitment and insight quickly led to a paid role, where she continued to support meaningful participation across services.

Katie went on to take on several roles supporting participation and engagement across children and young people’s services, helping ensure that young people’s voices are heard and influence how services are designed and delivered. Today, as Patient Leader, Katie’s role is focused on embedding co-production as a golden thread throughout Essex Children and Young People’s services.

“At the heart of my role is ensuring that the lived experiences of children, young people, families and carers help shape the way services are designed, delivered and improved,” she says.

This means moving beyond traditional engagement and consultation, and towards shared decision-making, where people who use services become equal partners in shaping them.

Katie is particularly passionate about ensuring participation is inclusive and representative, so that the voices of children and young people from diverse backgrounds and experiences are heard.

“I strongly believe that young people, families and carers should feel genuinely heard, valued and respected,” Katie says. “Their involvement should never feel like a tick-box exercise.”

“My approach is about bringing compassion and humanity into how services are shaped,” she explains. “When we work in true collaboration with people who use our services, the changes we make are more insightful, accessible and representative.”

For neurodevelopmental services supporting children and young people, this partnership approach is especially important.

Neurodiversity Celebration Week recognises that differences are natural in how people think, learn and experience the world. Ensuring services are designed with neurodivergent children, young people and families is essential to delivering compassionate and effective care.

This Neurodiversity Celebration Week, Katie’s journey reminds us that lived experience is not just valuable, it is essential in creating services that are inclusive, compassionate and responsive to the needs of every child and young person.