Telling stories: learning from patients' and families' experiences of specialist child and adolescent mental health services

Abstract Increasingly, patients', relatives', carers' and practitioners' experiences and values are recognized as important aspects of health-care decision-making. Arguably, practitioners, patients and carers should participate as co-producers of health care. The roles of patients and carers are changing as practitioners and their educators value more highly their experiences and expertise. One way of promoting co-production and user engagement in specialist child and adolescent mental health services is to actively involve patients and their carers in educating health-care practitioners. This recognizes that service users, or patients, can contribute in unique ways as experts in their illnesses. The aim of this paper was to explore the experiences and opinions of patients and their families about their specialist mental health care and inform a web-based educational resource for practitioners. This paper reports a qualitative study of the views, experiences and expectations of young people and their carers who were known to the specialist child and adolescent mental health service in Gwent. Qualitative, in-depth interviews were conducted with 15 families. Analysis of the transcripts focussed on the families' journeys into and through the service, their positive and negative experiences, and the impact of their mental health problems. Themes emerged that concern difficulties in gaining access to appropriate services because of lack of clarity in referral routes, poor communication among different agencies, and the impact of diagnoses on the young people and their families. Families known to the services were satisfied with the information and support provided by the services. Most identified particular staff or agencies that they had found helpful in their journey. The study reported here captured a rich seam of experiences and opinions that have since been translated into a web-based educational resource. The information from this study will equip practitioners to work more effectively with young people who are distressed or unwell and their families.