Christy Hoskings
Betsi Cadwaladr University Health Board
The 100 Stories Project presents the opportunity to support current improvement initiatives and programmes to develop a detailed understanding of the complex systems young people have to navigate when transitioning from children’s to adult services. 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.
Project Background:
Transition is a national priority for improvement, highlighted in a number of change agendas. In February 2022 the Welsh Government released its guidance on ‘The Management, Handover and Accountability of Healthcare Services for Children and Young People During their Transition from Children’s to Adult Services’. Since this time evidence continues to be shared in national reports that there are still issues impacting on the experience and outcomes for young people and families during transition.
Project Objectives:
The project will develop a highly informed evidence base, collating 100 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 to progress behaviour change. This 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.
Project Approach:
The 100 Stories Project design was co-created over 2 years, working with multiply 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’ Technique
- Collating stories through group storytelling
- Completing a ‘Community Enquiry’ for deeper understanding Completing a ‘Theory of Change’ with groups and leaders across the system to create a plan for change
- Supporting the development of strategic plans to implement ‘learning cycles’
- Evaluating the impact overtime through the ‘Most Significant Change’ Model
Community Enquiry: 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
Project Outcomes:
The early thematic analysis is supporting the findings from our data analysis and mapping exercise, which demonstrate we have gaps in services and growing waiting times are having a negative impact on young people, families and professionals. What has been significant in our learning so far, is the multiple systems wide impacts that can influence a child’s journey into adulthood and their access or need for adult services.
Project Impact:
- Transformation Programmes in North Wales are working with the evidence being generated from the project, with Wrexham University supporting further research.
- The PSB’s & RPB’s are engaging with the project to support leadership engagement & commitment.
