Patient and public involvement and engagement in co-designing guidance for mental health professionals supporting neurodivergent children and young people in child and adolescent mental health services

Abstract

Neurodivergent children and young people, including those with autism, attention-deficit/hyperactivity disorder and intellectual disability, experience higher rates of mental health difficulties than their neurotypical peers. Despite this increased need, many families encounter barriers when accessing child and adolescent mental health services (CAMHS). These barriers may occur across the service pathway, including referral, triage, assessment, treatment, and discharge. Patient and Public Involvement and Engagement, and professional contributions are essential to ensuring that CAMHS and research reflect the needs and priorities of those who use them. This paper describes a programme of PPIE and professional contribution activities undertaken to co-develop practical guidance for mental health professionals supporting neurodivergent children and young people. We – a partnership between a PhD researcher, a parent with lived experience, a young person with lived experience and two PhD supervisors undertook a programme of PPIE activities, using a co-designed ‘Co-production, Accessibility, Participation and Engagement’ approach, over 12 months (December 2024 to November 2025). NW is a doctoral student, and HTr is a PPIE parent and lived experience partner. Together, we facilitated co-production activities with PPIE members, discussions at parent carer conferences, and with professional contributors to support inclusive participation and prioritise ideas. Parents, carers, neurodivergent children and young people, and professionals from health, education, and social care participated in workshops, co-production activities, and discussions exploring experiences of accessing CAMHS and identifying opportunities for service improvement. Insights shared during these activities informed the co-development of practical guidance for mental health professionals. A total of 60 PPIE and professional contributors took part in co-production activities. Contributors highlighted barriers including communication challenges, misunderstandings of neurodevelopmental differences vs. mental health conditions, fragmented services and limited clinician training in neurodiversity-affirming approaches. These insights informed the development of an open-access guidance resource outlining practical recommendations to support more inclusive communication, service approaches, family participation, and ongoing evaluation of service accessibility. Collaborative involvement with lived-experience contributors enabled the development of practical guidance to improve accessibility and inclusivity within child and adolescent mental health pathways for neurodivergent children and young people. This work demonstrates how structured PPIE and professional contribution approaches can support the development of resources grounded in lived experience and contribute to ongoing discussions about inclusive child and adolescent mental health service design. Neurodivergent children and young people, including those with autism, ADHD and intellectual disability, experience mental health difficulties more often than their peers. Many families report challenges accessing appropriate community mental health services. Long waiting times, limited understanding of neurodivergence, and services designed mainly for neurotypical children and young people can make it harder to receive timely and appropriate support. Patient and Public Involvement and Engagement (PPIE) means working together with people who have lived experience to improve research and services. In this project, parents, carers, neurodivergent children and young people, professionals and researchers worked together to develop guidance for mental health professionals. The aim was to improve how services carry out triage, assessment, treatment and discharge for neurodivergent children and young people. Over 12 months, we held workshops, co-production activities and meetings with lived-experience contributors and professionals from health, education and social care. Participants discussed barriers to accessing services and suggested ways to improve practice. Ideas were discussed and prioritised through structured group discussions. Together, we developed guidance for mental health professionals that outlines practical recommendations for communicating with neurodivergent children, young people, and their families; adapting assessment and therapy approaches; ensuring meaningful participation by families, children, and young people; and evaluating whether services are inclusive. Co-designing guidance with people who use services helps ensure that recommendations are practical, inclusive and responsive to real needs. This work demonstrates how involving families, children, young people, and professionals can contribute to improving accessibility and engagement within mental health services for neurodivergent children and young people.