Background ADHD affects some individuals throughout their lifespan, yet service provision for adults in the United Kingdom (UK) is patchy. Current methods for mapping health service provision are resource intensive, do not map specialist ADHD teams separately from generic mental health services, and often fail to triangulate government data with accounts from service users and clinicians. Without a national audit that maps adult ADHD provision, it is difficult to quantify current gaps in provision and make the case for change. This paper describes the development of a seven step approach to map adult ADHD service provision in the UK. Methods A mapping method was piloted in 2016 and run definitively in 2018. A seven step method was developed: 1. Defining the target service 2. Identifying key informants 3. Designing the survey 4. Data collection 5. Data analysis 6. Communicating findings 7. Hosting/updating the service map. Patients and members of the public (including clinicians and commissioners) were involved with design, data collection and dissemination of findings. Results Using a broad definition of adult ADHD services resulted in an inclusive list of identified services, and allowed the definition to be narrowed to National Health Service (NHS) funded specialist ADHD services at data analysis, with confidence that few relevant services would be missed. Key informants included patients, carers, a range of health workers, and commissioners. A brief online survey, written using lay terms, appeared acceptable to informants. Emails sent using national organisations’ mailing lists were the most effective way to access informants on a large scale. Adaptations to the methodology in 2018 were associated with 64% more responses (2371 vs 1446) collected in 83% less time (5 vs 30 weeks) than the pilot. The 2016 map of adult ADHD services was viewed 13,688 times in 17 weeks, indicating effective communication of findings. Conclusion This seven step pragmatic method was effective for collating and communicating national service data about UK adult ADHD service provision. Patient and public involvement and engagement from partner organisations was crucial throughout. Lessons learned may be transferable to mapping service provision for other health conditions and in other locations. Electronic supplementary material The online version of this article (10.1186/s12913-019-4287-7) contains supplementary material, which is available to authorized users.

Background UK clinical guidelines recommend treatment of attention-deficit hyperactivity disorder (ADHD) in adults by suitably qualified clinical teams. However, young people with ADHD attempting the transition from children's to adults’ services experience considerable difficulties in accessing care. Aims To map the mental health services in the UK for adults who have ADHD and compare the reports of key stakeholders (people with ADHD and their carers, health workers, service commissioners). Method A survey about the existence and extent of service provision for adults with ADHD was distributed online and via national organisations (e.g. Royal College of Psychiatrists, the ADHD Foundation). Freedom of information requests were sent to commissioners. Descriptive analysis was used to compare reports from the different stakeholders. Results A total of 294 unique services were identified by 2686 respondents. Of these, 44 (15%) were dedicated adult ADHD services and 99 (34%) were generic adult mental health services. Only 12 dedicated services (27%) provided the full range of treatments recommended by the National Institute for Health and Care Excellence. Only half of the dedicated services (55%) and a minority of other services (7%) were reported by all stakeholder groups (P < 0.001, Fisher's exact test). Conclusions There is geographical variation in the provision of NHS services for adults with ADHD across the UK, as well as limited availability of treatments in the available services. Differences between stakeholder reports raise questions about equitable access. With increasing numbers of young people with ADHD graduating from children's services, developing evidence-based accessible models of care for adults with ADHD remains an urgent policy and commissioning priority.

No abstract