Service types

Gaining a clear picture of provision was not straightforward because of differences in NHS service organisation by country and region of the UK. For example, many health services in England are funded via commissioning bodies, whereas in other countries, such as Wales, the commissioning process is often described instead as planning and financing, with the agencies responsible the same as those responsible for service delivery. Differences in the structures of the respective National Health Services of each country in the UK, and how they function across the four jurisdictions, may have influenced the number of responses we had, as well as the way that services were reported.

Informants reported experiences of treatment for adults with ADHD at a range of service types. However, only 44 were ‘dedicated’ NHS services for adults (those with ‘ADHD’ or ‘neurodevelopmental’ in their name) and, of these, less than one-third offered the full range of treatments recommended by the NICE guidelines.¹ Although treatment with medication was available at more than 80% of dedicated services, psychological treatment was available at only half. It is possible that the treatments recommended by NICE that were not available at some dedicated services were provided by other local NHS services. This seems to us to be unlikely, given that previous research suggests that patients struggle to access the full range of recommended services, including support for young people who are transitioning between services, and psychological treatments.^{Reference Price, Janssens, Woodley, Allwood and Ford6,Reference Eke, Ford, Newlove-Delgado, Price, Young and Ani18,Reference Young, Adamou, Asherson, Coghill, Colley and Gudjonsson21} Dedicated services did not indicate to us that they sourced these treatments for patients elsewhere, but further research could explore this explicitly.

Owing to the current complexity of the organisation of services for adults with ADHD in the UK, it was difficult to assess whether a lack of a dedicated service equated to the lack of any commissioned service for adults with ADHD in that area. Existing evidence suggests that young people with ADHD may not meet referral criteria for generic adult mental health services, and there can be difficulties in accessing treatment related to a lack of training and specialist knowledge among staff.^{Reference Coghill4,Reference Price, Janssens, Woodley, Allwood and Ford6} Some stakeholders would argue that UK regions with no ‘dedicated’ services represent a gap in provision of care for adults with ADHD. Although an additional 99 ‘non-dedicated’ UK adult NHS services were identified, their existence was most commonly reported only by health workers, rather than service users or commissioners. This suggests that these services may be less accessible, with possible implications for resourcing. Existing qualitative research suggests that service users may be more satisfied with the care for adults who have ADHD that they received at dedicated or ‘specialist’ services.^{Reference Matheson, Asherson, Wong, Hodgkins, Setyawan and Sasane22}

A surprisingly high number of ‘other services’ were identified at which support had been experienced, including child NHS services, private and charitable services. These may represent additional choice and a richer variety of healthcare options, although this needs consideration in the context of difficulties faced by patients trying to access appropriate NHS care for adult ADHD.^{Reference Belling, McLaren, Paul, Ford, Kramer and Weaver23} Previous research suggests that clinicians who work in NHS-provided services for children may continue to deliver treatment beyond the upper age specified for their service in locations where no service for adults is available. This may have an impact on the capacity to respond to younger children in need.^{Reference Young, Adamou, Asherson, Coghill, Colley and Gudjonsson21} There are also reports of adults seeking privately funded healthcare when no other route to treatment is available,^{Reference Wong, Asherson, Bilbow, Clifford, Coghill and DeSoysa24} and 40 such services were reported in the present study, highlighting potentially significant out-of-pocket expenses incurred by people with ADHD. This raises concerns for the well-being of the most vulnerable members of the population for whom private healthcare is not an option and who lack advocates to negotiate or navigate services on their behalf.

There is still no clear consensus on optimal models for the provision of care for adults with ADHD;^{Reference Coghill4} the NICE guidelines state only that a service should be provided by teams of ‘healthcare professionals with training and expertise in diagnosing and managing ADHD’.¹ Future research should explore different models of service provision within primary and secondary healthcare services, including evaluations of their effectiveness and cost-effectiveness. There is also scope for further mapping to explore the uptake and availability of shared care for ADHD, as qualitative research suggests that some young adults are treated exclusively by their GPs, while others experience difficulties finding a GP willing to prescribe medication even under shared care arrangements.^{Reference Janssens, Eke, Price, Newlove-Delgado, Blake and Ani20} This suggests that the implementation of shared care arrangements may be highly variable.

Strengths and limitations

This research has provided the most extensive data to date about the availability of services for adults in the UK who have ADHD, and it extends existing region-specific and single-source information^{Reference Hall, Newell, Taylor, Sayal, Swift and Hollis10,Reference Hall, Newell, Taylor, Sayal and Hollis14} by triangulating reports from a range of stakeholders. The use of FOI requests to contact commissioners ensured that staff with time and resources responded to enquiries, and proved effective, with a 90% response rate. The novel survey methodology, including collaboration with partner organisations, was a rapid and effective way of gathering reports from a range of stakeholders across the UK.^{Reference Price, Janssens, Dunn-Morua, Eke, Asherson and Lloyd16} However, although a target minimum number of responses was received from all but one UK region, the use of non-probabilistic sampling methods meant that respondents were not selected randomly. Necessarily, informants would have been computer literate and interested in ADHD. It is possible that this introduced bias, with survey informants more likely to be those who had struggled to access healthcare. The use of multiple informants and methods, combined with the high number of responses, mitigated the risk of bias and made it likely that the vast majority of relevant services were identified.

A clearer definition of ‘dedicated’ services would have improved the quality of the service map. However, given the complexity of health service provision in the UK, which made it difficult to be sure that health workers, service users and commissioners were identifying the same unit of ‘service’ when responding to the survey, we chose our definition to ensure that specialist teams and those generic services with practitioners with dedicated time to focus on adults with ADHD could be included on the map. The methodological decision to label services as dedicated meant that identified services comprised a range, from highly specialist national and regional services to clinicians with only a few days a month dedicated to ADHD-related work within their generic adult mental health service. Resource limitations meant that service details were checked only with providers of dedicated services, and their capacity, in terms of staffing levels, and key indicators such as waiting-list times were not evaluated. During analysis, differences in service organisation by country and region of the UK made it difficult to ascertain whether an area without a dedicated service was also therefore an area without a commissioned service for adults with ADHD. Findings from the analysis of differences in reporting should be considered in the context of the balance of survey responses, with the majority of responses coming from health workers. As UK health services for adults with ADHD are continually evolving, this research provides only a snapshot in time. However, this baseline map of services has been hosted by the UK Adult ADHD Network (https://www.ukaan.org/adult-adhd-service-map), which will maintain and update it over time, so that it is a useful resource for all stakeholders.

Implications

Given the importance of continuing treatment for ADHD into adulthood where needed,^{Reference Kooij, Bijlenga, Salerno, Jaeschke, Bitter and Balazs5,Reference Lichtenstein, Halldner, Zetterqvist, Sjolander, Serlachius and Fazel7,Reference Chang, Lichtenstein, D'Onofrio, Sjolander and Larsson8} the increasing numbers of young people with ADHD graduating from child services and the existence of effective evidence-based treatments,^{Reference Bolea-Alamanac, Nutt, Adamou, Asherson, Bazire and Coghill3} these data highlight the urgent need to improve provision and access for this vulnerable population. Clearly defined, accessible and equitable services for adults with ADHD are needed, combined with better information about what is available for public and professionals. The map of services is a tangible resource to provide better quality and accessible information to all stakeholders, the lack of which has been identified as a barrier when patients need to transition into adult services.^{Reference Price, Janssens, Woodley, Allwood and Ford6}

The geographic gaps in the availability of NHS dedicated services for adults with ADHD, as well as limited availability of the treatment options recommended in the NICE guidelines, suggests that where someone lives will have an impact on whether or not appropriate treatment is available to them, which is contrary to the stated aim of the NHS of equitable access to appropriate healthcare for people with long-term conditions, and should be addressed as a matter of urgency.