In transition between child and adult services for young people with Attention Deficit Hyperactivity Disorder (ADHD); the need for transition and the use and usefulness of the National Institute of Health and Care Excellence (NICE) guidelines

Abstract

This thesis focussed on the transition between child and adult services for young people with Attention Deficit Hyperactivity Disorder (ADHD). It aimed to estimate the incidence of transition, and identify guidelines and protocols for transition and how these are implemented. It also considers the influence of the National Institute of Health and Care Excellence (NICE) guidelines within current health service provision. A multi-method approach was used. A systematic review of existing guidelines for ADHD transition was conducted, providing an overview of current literature. A surveillance study was carried out to estimate the incidence of transition, and to identify whether clinicians adhere to the elements of optimal transition. Clinicians from the surveillance study were invited to participate in a qualitative interview, to gain further insight into their perspectives of the NICE guidelines and how these are used. Finally, the NICE guidelines are considered in a legal context and the question of whether the law can play a part in the transition of young people with ADHD is discussed. In 2016, 315 young people in the British Isles required a transition to an adult service, but only 22% of them completed the transition and were seen in the adult service. An estimated incidence rate of transition was calculated between 202.9 and 511.2 per 100,000 population aged 17-19 per year. The estimated rate of successful transition ranged between 38.5 and 96.9 per 100,000 population aged 17-19 per year. The only available guidelines for transition are the NICE guidelines, and any locally produced protocols are based on what NICE recommend. Interviews with clinicians (n=38) indicated that information transfer occurs between services, but joint working and continuity of care is often not evident, despite the surveillance study demonstrating that a period of joint working is a strong predictor of successful transition. Full implementation of the NICE guidelines could enhance the transition process and have a positive impact on the wellbeing of the young person. However, NICE guidelines are not mandatory, and adherence is poor. In summary, the findings of this thesis highlight the substantial need for transition in ADHD. Current practice does not closely follow the NICE guidelines. Considering the long term implications of poorly managed ADHD and transition for young people and society, it raises questions about the purpose of NICE guidelines if there is a lack of adherence, and clinicians do not consider them a priority