In this chapter, we discuss RAiISE (Raising Awareness of invisible Illnesses in Schools and Education), a charity founded in the United Kingdom that is led by young people, for young people. From the perspective of the Chief Executive Officer (CEO) and the Board of Trustees, all of whom have lived experience of invisible illnesses themselves or as a parent/carer, we will provide insight into day-to-day life for the charity and its unique journey from an initial idea of one young person diagnosed with a chronic health condition to a national organisation with a global presence. RAiISE is a positive example of young people leading health and wellbeing initiatives with the support of healthcare and education professionals, rather than simple instances of young people’s engagement or involvement. It also highlights the importance of collaboration across sectors, including schools and charities, to ensure that young people with health conditions are adequately supported, acknowledging the wider impact of health on a young person’s life – away from the hospital. In this chapter, we will refer to ‘invisible illnesses’, which for context, is an umbrella term for any health condition that isn’t easily visible to others. This includes chronic conditions such as cystic fibrosis, diabetes, inflammatory bowel diseases and musculoskeletal diseases, among others – but also mental health illnesses such as anxiety, depression and schizophrenia. RAiISE attempts to be as inclusive as possible in reference to invisible illnesses and equally helps to place the spotlight on visible illnesses affecting young people too. The importance of young people’s involvement in healthcare is undeniable, and recent years have shown a positive increase in the inclusion of young people’s voices in decision-making processes in healthcare (Weil et al, 2015).
There is increasing interest in young people’s participation in the design and delivery of health services. But young people’s views are not consistently sought or acknowledged, and they are still often marginalised in healthcare encounters.Drawing on original research and a diverse range of practice examples, Brady explores the potential for inclusive and diverse approaches to young people’s participation in health services from the perspectives of young people, health professionals and other practitioners.She presents a practical new framework, embedded in children’s rights, that shows how young people’s participation can be integrated into services in ways that are meaningful, effective and sustainable.This book explores how young people’s participation can be inclusively and sustainably embedded into health services. Using rich case studies of participation in practice, Brady presents a new evidence-based framework to support policymakers and practitioners to embed young people’s participation more effectively in healthcare practice.