Health service transitions for young people with attention deficit hyperactivity disorder (ADHD): investigating information provision and United Kingdom adult ADHD service availability

Within this thesis I explored transition between child and adult services for young people with attention deficit hyperactivity disorder (ADHD); focussing on the role of information provision, and mapping current availability of and geographic variations in United Kingdom (UK) services for adults with ADHD. A systematic review of stakeholder transition experiences was conducted, providing an overview of current literature. Qualitative interviews were conducted with young people (n=64) and parents/carers (n=28), to explore the role of information through transition. A national survey was piloted and then run to map UK health services for adults with ADHD. Finally, an analysis of regional differences in prescribing of ADHD medication and referrals to adult mental health services (AMHS) was conducted, using primary care records from the Clinical Practice Research Datalink (CPRD) database. The systematic review identified negative transition experiences related to limitations of adult mental health services, inadequate care, and a need for better information. Three themes emerged from the qualitative study: navigating information with help from parent/carer; information on ADHD into adulthood; and information about the transition process, providing insight into how communication may affect transition. The UK mapping study had 2686 responses from commissioners, health workers and service users and identified 294 National Health Service (NHS), voluntary and private services. Of 44 dedicated NHS adult ADHD services, 27% provided all treatments recommended by National Institute for Health and Care Excellence. Analysis of CPRD data revealed significant regional differences in primary care prescribing of ADHD medication through the transition period as well as in referral rates to AMHS. Findings highlight an urgent need to improve information provision and provide accessible adult ADHD services across the UK, to support transition for young people with ADHD and reduce health inequalities. Services need to recognise the crucial role of parents/carers as information navigators, and the importance of young people understanding about ADHD into adulthood and being informed about transition processes. Strategies are needed to reduce negative emotional experiences associated with this information vacuum. The limited number of dedicated NHS adult ADHD services appears to represent a significant barrier to transition, however clarity is needed on optimum service configurations and the role of primary care