The personalization of service provision and responding to patients' expressed needs are key components of government plans to improve children and young people's mental health services in England. This qualitative study explored the use of patient experience research in these services. Despite national level commitments to listening to and acting on the "patient's voice," both service users (young people) and parents of this group reported never having been invited to participate in patient experience research. Most professional respondents reported that such research was frequently tokenistic and conducted solely to meet an administrative requirement. Senior policy makers justified the limited investment in, and use made of patient experience research, by pointing to what they felt were more urgent priorities facing children and young people's mental health services. These included unprecedented levels of demand and critical underfunding of mental health services and related youth- and community-based services. The conceptualization of patient experience research within the National Health Service (NHS) as a service improvement issue was found to have led to its status being diminished to one concerned with relatively cosmetic matters, such as the color scheme or choice of pictures on the walls of clinics. Senior policy makers argued that it was important to rethink the role and value of patient experience research, and to recognize its unique contribution to addressing the existential questions facing services.
Keywords: children and young people; mental health; patient feedback; patient perspectives/narratives; patient safety; patient satisfaction; qualitative methods.
© The Author(s) 2020.