When I arrived at the university, the gallery was enshrined with story books and artwork, depicting individuals stories, thoughts and feelings. I felt really privileged to have the opportunity to experience this and to learn about peoples life experiences, some of which were extremely personal and emotive.

The word ‘inspiring’ can sometimes be overused – but this event, and the people involved in the project are truly inspiring. I can only commend the courage it must have taken to speak up and share such personal stories. But sharing different and honest narratives is so important if we really want to drive the change that is needed.  

You’re probably wondering what the 100 Stories Project is all about...

Led by Betsi Cadwaladr University Health Board and Wrexham University Civic Mission, the 100 Stories Project provides the opportunity to develop a detailed understanding of the complex systems young people have to navigate when transitioning from children’s to adult services. The aim was to collate100 stories and narratives from across the system to influence action through generating social proof and using coproduction to work together with all levels of the system over time, progressing behaviour change. This insight, gathered from understanding the experiences of professionals, young people, parents and carers, will enable decision makers to fully understand the challenges within this area and support ongoing action to undertake the changes that are needed through coproduction and the development of systems learning cycles.

The project has a focus on the voices we are not hearing, particularly voices of young people and young adults with a neurodevelopmental condition and/or a learning disability.

The picture in North Wales

The population of children and young people with a disability is increasing in North Wales, this increases the numbers of children that will require transition in the future. The overall population of those with moderate or severe learning disabilities is also increasing in North Wales, which has an impact on the likelihood of continued support into adult services.

Increased waiting times for services are impacting on the age young people are assessed by neurodevelopmental services, leading to later diagnosis. This is affecting the development of transition processes in line with national guidance. The increased wait times also have a possible correlation to needs escalation, which can lead to the need for more intensive support or prolonged support into adulthood.

The project approach

The 100 Stories Project design was co-created over 2 years, working with multiple partners and organisations to consider a safe and effective methodology that has a strong foundation of evidence and ethical safeguards and considerations.

The approach includes:

• Service mapping and data collation
• Training & upskilling participants in ‘Public Narrative’ Techniques
• Collating stories through group storytelling
• Completing a ‘Community Enquiry’ for deeper understanding
• Completing a ‘Theory of Change’ with groups and leaders across the system
• Supporting the development of strategic plans to implement ‘learning cycles’
• Evaluating the impact overtime through the ‘Most Significant Change’ Model

Key learning from the Community Enquiry found…

• Young People are experiencing a gap between children’s and adult services, there is a significant difference in eligibility criteria and availability of provision.
• Waiting times are impacting on young people’s health, social and economic outcomes, limiting opportunities to thrive as adults.
• Professionals are concerned and often feel helpless to change the system.
• Parents and carers are often isolated from the transition process and struggle to navigate the complex system, which then impacts on family resilience.
• Education, bullying and societal attitudes impact on young people and can drive inequalities that lead to poorer outcomes as they become adults.
• Young adults are having to manage systems wide barriers and experience inequality.

What needs to change?

• There is a need to develop a whole family approach during transition.
• A consistent offer between adult and children’s services, with an aligned criteria.
• More consistency and clear information and communication regarding service access and pathways.
• A greater focus on joint working between children’s and adult services and jointly funded services/shared budgets.
• Greater opportunities to connect with children, young adults and families, to enable them to have more voice in service delivery.
• Greater focus on individual need and less focus on an expectation of diagnosis in education, health and social care.
• Work with multiple sectors and society on understanding neurodiversity and learning disability, challenging conceptions/attitudes to open up more opportunities for young people to flourish socially, economically and healthily.
• A greater national focus. Leadership and funding is needed to remove barriers for professionals.

Key Conclusions

The greatest success of the project lies in the detail and content of the stories collated, which has enabled the isolation of recurring themes and the project’s ability to communicate challenges through an alternative medium outside of the traditional forms of reporting.

This has enabled the facilitation of meaningful action, building from the natural human response to listening to real human experience through the medium of storytelling.

The stories have gone beyond the original intention in understanding the experience of transition from multiple perspectives and have in fact highlighted the numerous interlinked complexities of the wider system that impacts on the outcomes of young people as they become adults. This is a significant factor, as it creates further opportunities for cross systems learning, which will support the ambitions of the project to create systems of coproduction to support onward learning cycles and strategies with cross system expertise.

If you’d like to know more about the 100 Stories Project and the impact it’s having, please email good.practice@audit.wales and we can make introductions with the project team.

About the author

Bethan Smith is the Programme Manager for the Good Practice Exchange Team. Bethan has worked for Audit Wales for over 12 years. Prior to this, Bethan worked in a number of roles within the Social Services department of a local authority in North Wales.