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This paper presents findings from a UK mixed-method study that aimed to understand parents/carers' views and experiences of support received from health services for primary school age (4–11) gender diverse children and their families. Data was collected via an e-survey including 10 open-ended questions with 75 parents/carers addressing experiences with (i) primary health services, including general practice (GP) clinics and child and adolescent mental health services (CAMHS) (ii) specialist gender identity development services (GIDS) (iii) non-health related support including transgender groups and online resources. Findings are organised into four themes: 'journey to health service provision', 'view on health services used', 'waiting' and 'isolation'. Discourses about gender diversity, childhood and the validity of trans healthcare shape parental experiences, including their desire for better information, more certainty in healthcare pathways and more expedient access to support services to reduce anxiety, distress and isolation. The emotional costs of waiting are compounded by the material costs of accessing the limited number of specialist services. Experiences could be improved through ensuring GPs and CAMHS are better prepared, expanding access to trans-specific support groups for those caring for children and young people, and exploring the provision of school-based support for gender diverse primary-age children. [ABSTRACT FROM AUTHOR]

The increase of chronic illness as a leading cause of death has given rise to self-care and expert patient initiatives. Caring for chronically ill people places a tremendous economic burden on the health care system, informal carers, the labour market and benefit system (Department of Health 2001, 2004, 2005). Thus, in many countries health policy encourages patients to become ‘experts’ in the self-management of their conditions in the belief that it will help save money and improve health and well-being (Wanless 2002). For example, the notion of ‘expert patients’ has emerged in UK policy and is pivotal to government plans to modernise the National Health Service (NHS) by linking patient expertise to ideas of empowerment, a better quality of life, self-esteem and a user-driven NHS (Department of Health 2001; Fox et al 2005). Self-management and expert patient initiatives aim to encourage chronically ill patients to become more actively involved in decisions concerning their care and well-being (Lorig and Holman 2003; Lorig et al 1985, 1999, 2001). [ABSTRACT FROM AUTHOR]