With us not for us: Learning from the PANELS project on embedding underserved young people’s participation in integrated care

Background: Young people in the UK have poorer health and wellbeing than in many comparable countries. Integrated Care Systems (ICS) were set up across England in 2021 to enable health, social care and community organisations to work together and improve the health and wellbeing of local people. However ICSs face significant challenges including growing health inequalities, pressures on services and cuts to staff and funding.
Approach: Based in an inner-city area with a very diverse population, high levels of poverty and limited support for young people the PANELS (PArticipation of under-served young people in North East London health and wellbeing Services) project explored how integrated care systems can best involve underserved young people. Taking a rights-based approach, the project focuses on the transition to adulthood (age 15-25) for young people most likely to face health inequalities. More information: https://www.communityactionredbridge.org.uk/panelsproject. The project was funded by a UK National Institute for Health and Care programme development grant and hosted by a National Health Service Trust. It was developed and delivered collaboratively by young people, a community organisation and academic researchers. The overall aim of the project is to create a strong and lasting place-based partnership between young people and adults who work with them. Following a stakeholder mapping exercise and workshop, the project used a community of practice approach to develop a network of professionals who came together to explore what good and inclusive participation of young people in integrated care looks like in practice and explore new ways of working. Local young people were involved from the outset, from an initial workshop which led to two young people being co-applicants and part of the core project team, to a group of young advisors who were involved throughout the project, including coproducing an evaluation. Led by the community organisation and young advisors, the project took a flexible and inclusive approach to involving local young people in ways that worked for them, including engaging with existing groups and services as well as workshops.
Results: ‘Good’ participation needs to be meaningful, flexible, and trauma-informed, working with young people in ways that work for them. Place-based, co-production, and creative health approaches offer opportunities to positively address intersectional barriers and develop services that meet young people’s needs. The role of parents and carers needs further consideration as they can be both facilitators and barriers to young people’s participation. Involving voluntary and community organisations in collaborative opportunities can be challenging due to limited resources and ‘consultation fatigue’. Reorganisation and funding cuts at national and local level create challenges to sustained change. Implications: Involving under-served young people has benefits for integrated care systems and health and care services, leading to services that better meet the needs of the young people who most need them. Inclusive, flexible and young people-centred approaches are essential for coproducing services with young people who are less often heard.