The transition from children's services to adult services for young people with attention deficit hyperactivity disorder: the CATCh-uS mixed-methods study

Changes to the study protocol for strand 1

Our application to CAPSS and BPSU required estimates of the number of expected cases, which we based on the best available evidence to be three transition cases per provider trust over 12 months. These units are designed for rare conditions, or fewer than 300 notifications per year, although our estimates suggested a total of 573 cases. 4,56 To protect the participating clinicians from respondent fatigue, BPSU and CAPSS agreed to run the surveillance for 6 months, with the possibility to extend to the more usual period of 12 months should the number of reported cases be fewer than anticipated. We received 138 notifications from BPSU during the first 6 months, 58 of which were eligible for the study. Case notifications for CAPSS were very similar with 118 notifications, of which 38 were eligible for the study. These numbers presented a case for extension to both BPSU and CAPSS, which was approved.

The BPSU and CAPSS encourage the use of additional reporting sources to check for any cases that might have been missed by the original data source. South London and Maudsley NHS Foundation Trust (SLaM) has created an anonymised, regulated database of clinical records for research purposes: the Clinical Record Interactive Search (CRIS). SLaM was one of five trusts associated with this project and, after the submission of the initial protocol, we were granted access to the database to complete a complementary piece of research that provided data that supported the calculation of a national estimate for transition incidence. This allowed us to compare transition from CAMHS to AMHS in SLaM with reports from CAPSS. Unfortunately, there were no comparable data sets for transition from paediatric services to AMHS. Additionally, SLaM is a national centre of excellence for mental health, with national and specialist services for children and for adults with ADHD, as well as local teams for both age groups in each borough of London served. This level of provision is not representative of the UK.

There was also a minor change to the terminology used in the definition in the first month of the 13-month surveillance period as there was some misunderstanding among clinicians (see Chapter 3, Data validation).

Changes to the study protocol for strand 2

At the project start-up meeting [with co-applicants and members of the Study Steering Committee (SSC) present] it became evident that seeking one informant per area to inform the national service provision map would fail to deliver a complete map. The clinicians and researchers who were present had conflicting information on service provision for some areas because of the idiosyncratic knowledge of individuals. The mapping study developed into a multistakeholder, multi-informant study that included a pilot phase to test the new methodology. We had not planned a pilot for this work, yet it proved essential to work out which stakeholders to include and the most efficient method of mapping services to produce a useful and accurate map.

Changes to the study protocol for strand 3

The adoption of the CATCh-uS study by the National Institute for Health Research (NIHR) portfolio created a lot of interest among health trusts, which then contributed to the study and requested to be added as recruitment sites. This offered an opportunity to diversify our sample geographically and increase the diversity of service models accessed by the recruited patients (with or without follow-up services within or outside the trusts).

In addition, preliminary analysis of our interviews with clinicians highlighted primary care as a potential ‘destination’ for patients with ADHD leaving children’s health care, particularly for young people dropping out of services or for whom no ongoing services were available. Representation of GPs was not originally included in the design of the qualitative study; however, given no existing studies could be identified that included this stakeholder group, the decision was taken, in consultation with the SCC and with approval from our programme manager at NIHR, to recruit a sample of GPs. It was possible to resource this work from the existing funding envelope.

Surveillance methodology design

The BPSU and CAPSS methodology is well established and replicated in 14 countries; the study results influence management, planning and policy internationally. 87 Figure 3 illustrates how the system works. Over 3800 registered paediatricians from BPSU88 and 1000 psychiatrists from CAPSS89 are sent a surveillance orange/yellow ‘reporting card’ (now by e-mail) each month that lists the rare disorders or events currently under study. A limited number of research studies can be featured on the card at any one point in time, and the clinician returns the notification card indicating how many patients they have seen that meet the relevant study criteria. The research team then sends a questionnaire directly to the clinician. Usually BPSU and CAPSS studies run for 13 months; the first month is considered a pilot to identify any potential difficulties raised by clinicians, with the remaining 12 months’ data included as the full study.

FIGURE 3.

BPSU and CAPSS surveillance methodology. Reproduced with permission from Richard Lynn, British Paediatric Surveillance Unit, 2019, personal communication.

Reproduced with permission from Richard Lynn, British Paediatric Surveillance Unit, 2019

Governance and ethics

Both BPSU and CAPSS have a two-phase application process before granting approval to run a study. Phase I assesses the suitability of the research question to this type of surveillance methodology, whereas Phase II ensures that the surveillance definition and questionnaires cover only what clinicians would be expected to know or be able to access from clinical notes. Respondent burden is a prime consideration.

The approval granted by BPSU and CAPSS for this surveillance study was initially for 6 months with review thereafter. Both units were concerned that a large number of notifications would be received that would be beyond the capacity of each organisation and, thus, swamp the system. The plan was to review at 6 months and extend to 12 months, if warranted. At 6 months, 138 notification reports from BPSU and 118 from CAPSS had been received, which allayed the fears that both the clinicians and the surveillance organisations would be overburdened. The surveillance period was duly extended and, in total, ran from November 2015 to November 2016 with a 9-month follow-up post notification from August 2016 to August 2017. Responses were followed up for 3 months after the end of the surveillance and follow-up periods. Relevant ethics approval was sought and granted for this part of the study. Both BPSU and CAPSS have HRA approval for access to case note information without patient/parent consent, provided the study has CAG approval (Integrated Research Approval System registration number 159209, REC reference 15/YH/0426 and CAG reference 15/CAG/0184).

Case definition criteria

The surveillance unit asked consultants to report if they had seen any of the following in the previous month:

• young people with a clinical diagnosis of ADHD under the care of CAMHS or paediatric services who were reviewed within 6 months of the service age boundary

• young people considered to require continued drug treatment for their symptoms of ADHD after crossing the age boundary of the child service

• young people with ADHD and comorbid diagnoses, including learning/developmental disabilities, but only if it was their ADHD that required ongoing drug treatment.

Young people were excluded if they:

• had a diagnosis of ADHD but did not require medication or were unwilling to take it

• required transition to an adult service only for a psychiatric comorbid condition

• had already been notified to the study.

The definition was designed in close collaboration with members of both BPSU and CAPSS and had to be appropriate for both paediatricians and psychiatrists, to ensure that both sets of clinicians would identify young people to be reported in the study in as similar a manner as possible. The development of the definition required an iterative process of discussions and revisions. The final definition that was used unequivocally specified the need for ongoing support from specialist AMHS, as outlined in the NICE guidelines. 36 The aim of the definition was to provide a minimum estimate of the number of young people requiring a transfer from CAMHS and paediatric services to adult services during the surveillance period. Because not all children’s services extend to the age of 18 years, and some extend beyond this age, the age boundary was left unspecified to prevent the loss of cases in measuring when transition was occurring. The requirement for ongoing medication was chosen as a criterion to rule out subjectivity in the application of definitions of ‘ongoing care’. It would not capture those who did not need or want medication but did need ongoing psychological support.

Questionnaires

Baseline notification and follow-up questionnaires were developed using the corresponding systems templates, which comprised structured questions (30 at baseline and 19 at follow-up) with two open-text responses. All four surveillance study questionnaires are available (see Report Supplementary Materials 1–4). The baseline notification questionnaire was sent to all clinicians who reported a case to the study; questions confirmed eligibility and gathered semi-identifiable data on the patient (NHS number, gender, age in months and truncated postcode) to allow duplicate reports of patients seen by both general and specialist services, or by both CAMHS and paediatric services, to be identified. It also collected details of patient treatment and details of the planned transition to an adult service. Any professional with access to the patient notes could complete the baseline notification questionnaire on behalf of the lead clinician if necessary, although the reporting card was sent only to consultant paediatricians and child and adolescent psychiatrists.

Only cases confirmed as eligible in the baseline questionnaire were sent a follow-up questionnaire 9 months later. The follow-up questionnaire was sent to the same clinician who reported the case at baseline, with questions to confirm the outcome and details of the transition. There were nine elements of transition listed at follow-up and only five at baseline. This was to reflect what was stated in the NICE guidelines,33–36 and it was anticipated that at follow-up the transition would have occurred and clinicians would therefore be able to report on factors such as continuity and consistency that would not have been possible at baseline.

E-mail and postal reminders for non-returned questionnaires were sent after 4 weeks and again after 6 weeks, and finally a follow-up telephone call was made if the questionnaire was still outstanding. Clinicians were offered certificates to represent time committed to research to acknowledge their participation.

Data validation

Most BPSU studies choose to triangulate their data with other sources to help improve completeness and accuracy. 90 To check the reliability and validity of the data collected in this surveillance study, additional data were collected using clinical case notes from the Maudsley Biomedical Research Centre CRIS at SLaM. These additional data had several limitations. First, SLaM provides only CAMHS and not paediatric services; only the total numbers of cases and descriptive data captured by both systems could be compared because neither CRIS nor CAPSS allows individuals to be identified. Second, the geographical boundary of SLaM could not directly map with CAPSS data as researchers are blind to patient data and the information provided on each case related to the reporting consultant and not the service or clinic; therefore, the comparison with CAPSS reports could not get closer than the wider boundary of ‘London’. This method enabled a real-time data comparison and provided an indication of the completeness of the CAPSS reporting systems at collecting data on the incidence of rare events and processes in mental health services. We expected that CRIS would reveal fewer cases, as SLaM encompasses four London boroughs and the CAPSS data encompassed the whole of London.

The case definition criteria were the same as those applied to the surveillance study; criteria were operationalised into a structured query language, which was used to identify eligible cases in CRIS. Manual review of the electronic records by two researchers extracted the individual, clinical and service-related characteristics of the case, including details of transition (Table 1). The aim, given the previously mentioned limitations, was to replicate the data collected by the surveillance study.

The CRIS was approved as an anonymised data resource for secondary analysis by Oxfordshire REC (08/H0606/71+5). This project was reviewed and approved by the CRIS patient-led oversight committee (CRIS project reference: 961).

Analysis of surveillance data

Response rates at each stage of the study are described, as are sociodemographic details of the reported cases by each reporting surveillance unit, and overall. The response rate was generated from the number of notification cards returned to BPSU or CAPSS divided by the total sent. Incidence is defined as the number of new health-related events, in a defined population, in a set period of time. 91 Using the data collected in this surveillance study, the incidence rate was calculated by determining the number of confirmed cases of transition in patients with ADHD identified over the course of the study’s 12-month surveillance period. The population at risk (n = 116,651) was derived by applying the estimated prevalence of ADHD (approximately 5% in the child and adolescent population)92 to the total number of young people aged 17–19 years in the UK, as reported in 2016 (n = 2,333,035). 93 Our incidence rates were calculated by dividing the estimate obtained from the surveillance of cases aged 17–19 years by the population at risk and multiplied by 100,000 to provide the incidence rate of transition per 100,000 young people.

Two incidence rates were calculated: the incidence of young people who were eligible for transition and the incidence rate of successful transition in the obtained sample. The incidence rate was adjusted to take into account the non-returned or missing data from the surveillance study (via monthly reporting cards and surveillance questionnaires). The following corrections were made:

1. Correction for unreturned BPSU/CAPSS notification cards. To account for incidence among unreturned cards, a correction to the observed incidence rate was applied, using two assumptions as suggested by Petkova et al. 94 in a previous study:

   • Assumption 1 considers that the incidence observed in the study applies to half of the unreturned cards, assuming no incidence of transition among the remaining half of unobserved cases. The rationale for the assumption is that a larger proportion of missing notification cards are negative (i.e. those reporting no cases that month) given that it is more likely that people will fail to submit a nil return than a positive return. This assumption translates to a correction coefficient derived from the calculation (half of unreturned cards + percentage returned cards)/percentage of returned cards.

   • Assumption 2 considers that the incidence observed in the study applies to all unreturned cards, assuming that all unreturned notification cards follow the same pattern of yes/no responses as those notification cards already received. This assumption translates to a correction coefficient (100/percentage unreturned cards).

2. Correction for unreturned baseline questionnaires. To account for incidence among the unreturned baseline questionnaires, a correction coefficient calculated from the return rate for baseline questionnaires (100/percentage returned baseline questionnaires) was applied. The two correction coefficients described above were combined in the following adjusted rates:

• Adjusted incidence rate 1 –

  • = observed incidence rate × correction for unreturned notification cards (assumption 1) × correction for unreturned baseline questionnaires

  • this estimate applied the study observed incidence rate to half of all missing cases owing to unreturned notification cards and to all unobserved data owing to unreturned baseline questionnaires.

• Adjusted incidence rate 2 –

  • = observed incidence rate × correction for unreturned notification cards (assumption 2) × correction for unreturned baseline questionnaires

  • this estimate applied the study observed incidence rate to all missing cases due to unreturned notification cards and to all unobserved data due to unreturned baseline questionnaires.

The observed incidence rate and adjusted incidence rate 2 will provide a likely minimum to maximum range within which the actual rate is likely to fall.

Characteristics of eligible young people reported

The population of young people reported via surveillance was largely male (80% of BPSU cases and 74% of CAPSS cases) and white British (91%), which would be expected from what is known about the epidemiology of ADHD in children and young people96 (Figure 4).

FIGURE 4.

Ethnicity of the population. (a) CAPSS; and (b) BPSU.

Cases were reported from across the UK, but, as would be expected, the majority (> 85%) were from England (Figure 5). All cases reported from Wales, Scotland or Ireland were identified as white British or white Irish.

FIGURE 5.

Geographical spread of cases in the UK. Owing to low numbers of reports, Northern Ireland and the Republic of Ireland cases are reported together.

Table 4 shows the proportion of clinicians who reported the age boundary that their service works within, and Table 5 shows the range of the age boundary by country. Two cases originated from the USA, but were registered students who were seen in private practice in England. Over 80% of reported patients were aged 17 or 18 years at the point of referral for transition (mean age 17.4 years for BPSU, mean age 17.7 years for CAPSS), although the reported range extended from 14 to 20 years. A small percentage of clinicians (3%) stated that the age boundary for transition was variable. Paediatricians reported a more variable age boundary than child psychiatrists. Services in Wales, Scotland and Ireland appear to have more consistent age boundaries than services in England, perhaps as a result of the smaller administrative area covered.

A large proportion of patients (56% of those reported by paediatricians, 68% of those reported by psychiatrists) had a comorbid condition, which in 25% of cases was ASC. Nearly one-quarter (23%) of patients reported by paediatricians and over one-third (41%) reported by psychiatrists were prescribed more than one medication.

Definition of services

In the light of the complex nature of the provision being mapped, we asked stakeholders to respond to an inclusive service definition of ‘any mental health service for people with ADHD aged 18 years and above’. The categorisation of responses is described in Data analysis.

The online survey

The survey was designed using SurveyMonkey^® (Palo Alto, CA, USA) and in collaboration with the Parent Advisory Group and local clinicians. We used lay terms accessible to all informants and limited the length of the survey to include between five and nine questions (see Report Supplementary Material 6). The same version was used for all respondents. Basic demographic information was collected, including region (from a predefined list) and postcode. Respondents were provided with a checklist of services identified in a 2016 pilot survey and given the opportunity to indicate which of these services they knew, and were asked to provide details of any other services that were not already listed. After identifying a service, informants were asked to indicate if they, or anyone they knew, had experience of using that service for treatment/support of adult ADHD.

Respondents were also asked to indicate their primary role, with the opportunity to identify up to seven non-primary roles; for example, ‘Parent of child with ADHD’ as their primary role, but also a ‘Psychiatrist’ or an ‘Adult with ADHD’. The categories applied and their definitions are available in Report Supplementary Material 7.

Freedom of information

All commissioning bodies within the NHS were sent FOI requests, which give individuals the right to access recorded information held by public sector organisations. 136 The survey was sent via FOI e-mail addresses that were published online. In total, 209 English CCGs, 21 health boards (14 in Scotland, seven in Wales) and seven Northern Ireland health and social care trusts were contacted. These FOI requests asked the same five core questions as the online survey (e.g. template e-mail sent; see Report Supplementary Material 8). In addition, details were requested about the service type (adult, specialist, child and adolescent mental health or other) and interventions available (transitional care, medication, shared care, psychological, diagnosis or other). Respondents were automatically identified as commissioners and were not given the opportunity to indicate additional roles.

Surveillance study

Responses to two questions about service provision were included in mapping data analysis. The first question, included in the baseline questionnaire, asked for the young person’s intended destination (specialist adult ADHD, other AMHS, primary care or other), with identifying details, such as service name. The second, at follow-up 9 months later, asked for confirmation of the service to which the young person had been referred.

Qualitative study

Identified services were checked against services described in the CATCh-uS study qualitative interviews with patients and parents. Any other services mentioned in these interviews were added to the list of services, with the interviewee listed as the informant.

Online survey data collection

Survey links were distributed to potential informants via multiple methods, with the aim of maximising the responses:

• direct e-mails via the mailing lists of AADD-UK, ADHD Foundation and the Royal College of Psychiatrists (Faculty of Child and Adolescent Psychiatry as well as the Faculty of General Adult Psychiatry) (see Report Supplementary Material 9).

• e-mails via all regional Clinical Research Networks, with a request to target nurses, GPs, managers and clinical psychologists, as these groups had not been targeted via their professional organisation mailing lists

• Twitter (Twitter, Inc., San Francisco, CA, USA; www.twitter.com) – sharing the survey link via accounts of the various team members, tagging appropriate organisations

• publication of the link and an explanation in the British Association of Community Child Health, the Royal College of General Practitioners and the George Still Forum.

In addition, awareness of the research was raised through university press releases, organisational newsletters, conference presentations and social media. The survey was open for 34 days from 8 January 2018. An interim analysis of responses was conducted to identify under-represented locations or informant groups. Subsequently, ADHD and clinical organisations in those locations and working with those groups were targeted, with the aim of improving the balance of responses.

Data handling

Data were uploaded to Microsoft Excel^® (Microsoft Corporation, Redmond, WA, USA) and analysed using Stata^® SE15 (StataCorp LP, College Station, TX, USA). Response data were validated against online information, using free-text responses as key search terms and searching for details of the named services online to create a list of identified and verified services. This process allowed researchers to index all identified services and link services with the relevant organisational provider.

Services were categorised into four groups according to how ADHD specific the provision was (Figure 8). As online information was often quite dated or did not specify whether or not adult ADHD could be treated at that service, FOI requests were sent to check service provision of the dedicated ADHD services (see Report Supplementary Material 10). This generated a nested model of service specificity, with four layers of service provision for adults with ADHD in which layers also relate to the degree of certainty about the data. Layer 1 included the greatest degree of certainty as well as specificity.

FIGURE 8.

Stacked Venn diagram showing layers of service identification, decreasing in specificity of service type and reliability of information.

Data analysis

Descriptive statistics, by data source

In total, 2686 different reports were included in the study, with most data (80%) coming from the online survey; 12% of reports came from the clinicians in the surveillance study and 8% from commissioners in response to FOI requests (Figure 9).

FIGURE 9.

Graphic showing mapping study data sources.

Table 10 describes how informants varied in their method of reporting. Health workers contributed the most responses in the online survey, with a further contribution via the surveillance study, but we were pleased that 17% of the responses overall were from patients.

No new services were identified through checking qualitative study interviews; therefore, the qualitative study is not mentioned any further in this chapter.

Descriptive statistics, all data sources

Defining dedicated services

The complexity of health service provision and commissioning in the UK means that there was no way to ensure that health service workers, patients and commissioners identified the same ‘unit’ of ‘service’ when responding to the survey. In addition, like many specialist services in the NHS, such as specialist services for older people and eating disorder services,153,154 specialist adult ADHD services are not clearly defined, which made categorising services in a way that reflected experiences of multiple stakeholders challenging.

Within UK health care, a ‘team’ of clinicians may identify themselves (or be identified by patients) as a ‘service’ when they work across the whole or parts of provider organisations or their constituent units and localities. A ‘specialist service’ may be labelled through the individual perspective of a patient, a clinician, a manager or a commissioner without it necessarily being perceived as such by a provider or commissioner. Highly specialist services may be regional or even national in terms of the ‘catchment area’ from which they are willing to accept referrals; but, equally, as commissioning arrangements are complex and varied, local areas may commission their own specialist teams, which may include dedicated time for practitioners working in generic services to focus on adults with ADHD. This complex picture, paired with the aim of including multiple stakeholder perspectives, made the task of categorising adult ADHD services challenging. The label ‘dedicated’ will cover a range of services, from the highly specialist national and regional to the ADHD consultant who has 1 or 2 days per month within an AMHS.

Service types

Identified adult NHS services (groups A and B) were of most interest as they had scope to provide the range of treatments recommended by NICE via a ‘multidisciplinary specialist team/clinic with expertise in ADHD’;36 however, findings showed that many dedicated services (group A) do not offer the full range of recommended provision. It is possible that other adult NHS services (group B) offer treatments in line with UK clinical guidelines, but we lacked the resources to check these details. There seemed to be an interesting disagreement between health workers’ reports of adults accessing adult LD services for ADHD, perhaps for comorbid LD, and FOI request responses that stated that few of them provided services to adults with ADHD. The range of group C services identified (NHS services for those < 18 years, private and charity/voluntary services) provided a snapshot of ‘alternative’ ways that stakeholders currently access treatment or support for adult ADHD, and such services were surprisingly commonly reported, particularly by health workers.

Geographic variations in provision

Although our maps suggest that services are generally clustered in areas of higher population density (e.g. as illustrated in Figure 13), they also clearly illustrate geographic inequalities in dedicated provision, with areas where services appear to be currently lacking and where young people may need to travel long distances. However, it is possible that treatment is being provided through non-dedicated (group B) services in some of these areas, for example in Scotland, Wales and Northern Ireland, as indicated by FOI responses. The findings tie in with existing evidence of variable specialist service provision for adults with ADHD in the UK, with high levels of geographic variation and identified gaps in care. 75,125,129,155–157 Health-care services in Scotland and Northern Ireland have identified an urgent need to develop capacity and capability for treatment of adult ADHD. 155,156 The current study, with data collected in 2018, identified one dedicated service in Scotland and none in Northern Ireland, but some generic provision.

Various service models are currently employed in the treatment of adult ADHD. 130 One region that initially integrated ADHD services into CMHTs158 now has a dedicated service, implying a move towards specialist provision. By contrast, in one Scottish region where work was carried out to treat ADHD within generic children’s services,159 an adult CMHT was identified by patients and health workers, implying that support for adult ADHD may be being successfully accessed within this generic service. If there was sufficient expertise in generic services, the need for specialist provision would lessen.

Changes in service provision over time

In 2012, Zaman et al. 129 described seven UK services for adults with ADHD, which, if an exhaustive list, indicates that the numbers of dedicated services have increased rapidly over the last decade. The 33 English organisations identified here as providing dedicated services, when compared with 16 mental health trusts identified by Hall et al. ,75 also suggests an increase. However, owing to changing NHS structures, the number of English NHS trusts responsible for providing mental health services has almost doubled since 2013. 160 Examined with proportionality in mind, the 55% of English NHS mental health trusts found to provide dedicated adult ADHD services in 2018 represents only a marginal increase on the 44% found in 2014. 75

Organisation of services

Some controversy remains over how to organise adult ADHD services,159 and there is, as yet, no established, evidence-based service model. Some NHS organisations may treat adult ADHD within non-dedicated AMHS. NICE guidelines specify that services should include a team of clinicians with expertise in the diagnosis and treatment of adult ADHD. 36 Generic adult NHS services’ capacity and availability for treating adults with ADHD represent a grey area that needs urgent further investigation. 130 It is worrying that less than 30% of identified dedicated services provided the full range of NICE-recommended treatments, but, equally, it can be difficult to provide transitional or psychological care to those who live a considerable distance away. Some recommended treatments, particularly transitional care and psychological treatment, could be provided by other services.

Stakeholder perspectives

Analysis of stakeholder perspectives showed that a significantly lower proportion of other adult NHS services (group B) were identified by all stakeholders than the proportion of dedicated NHS adult ADHD services (group A) that were identified. This raises questions over which generic adult NHS services provide accessible treatment for adult ADHD in practice and in line with guidelines. 36,158 The significant differences in stakeholder identification of other NHS adult (group B) services, the majority of which were identified by health workers alone, implies that patients may not be accessing these services. This could be because patients do not know about them, those that attend them did not respond to the survey or only a ‘lucky’ few patients received care from clinicians going beyond the remit of their service to meet patients’ needs. It could also mean that, although health workers believe that general adult NHS services offer treatment to adults with ADHD, in practice referrals to that service are not accepted. This barrier to transition was identified in the surveillance study, which found that only two-thirds of ADHD referrals to adult services were accepted. The fact that large numbers of patients referred were not accepted into adult services is particularly concerning as this can cause significant emotional distress. 58,125,131,161

Non-NHS services and child NHS services

Of the services identified by respondents at group C (child NHS, private and voluntary/charity), the large number of NHS services for those < 18 years replicates research findings that when transition fails or adult ADHD services are not available, child services may keep young people beyond the age boundary of their service. 58,131,155,162 This represents a pragmatic short-term solution to gaps in adult ADHD provision, but one which may lead to suboptimal care,163 and reduce the capacity of CAMHS to work with other younger people. The large number of private and charity/voluntary services indicates their significant role in adult ADHD treatment and support. The large number of private providers raises the question of whether patients are being pushed into paying for care because of the lack of NHS services, although this is an issue not necessarily confined to ADHD.

Methodological issues

To our knowledge, this study was the first national ADHD service survey in the UK to triangulate perspectives from a wide range of patients, health workers and commissioners, and apply multiple methods to optimise responses. Checking provision offered by generic adult NHS services was challenging because of a lack of up-to-date information available online, so we had to rely on informant reports, which could lack detail about what is provided. Study resource limitations meant that we were able to send FOIs to verify provision to LD and dedicated services. Of LD services, only 6% were confirmed by their providers as treating adult ADHD, which implies that, for this subsection of group B at least, not all identified services provided treatment as part of their official remit.

Although large response numbers and a reasonable balance of responses were attained, the majority of responses came from the online survey, which necessarily accessed a sample of interested and computer-literate responders. As it was not obtained via a known sample frame, this approach potentially introduced information bias, but we would argue that our findings still contribute significantly towards knowledge of and reporting of services. For this reason, analysis of service identification by stakeholder group should be treated with caution, as those who may be struggling to access services may be particularly likely to be in contact with the support organisations that supported us to disseminate the survey. Despite efforts to target young people with ADHD, very few responded to the online survey and, thus, their views are under-represented. In addition, we had differential access to stakeholders, with direct e-mail contact from the Royal College of Psychiatrists and ADHD support organisations, which, clearly, are likely to be more concerned than other health disciplines.

Service capacity of dedicated services, in terms of staffing levels, size of service and catchment area, was not evaluated and we lacked resources to confirm the status of other adult NHS (group B) services. The pragmatic definition of ‘dedicated’ ADHD services, adopted when grouping services, was in line with the study aims. A more robust definition of ‘dedicated’ or ‘specialist’ ADHD adult NHS services could enhance the clarity of the service map but would take considerable additional resources to complete with a high level of accuracy. Alternative approaches to mapping provision, such as contacting all providing NHS organisations and asking them to confirm which ADHD treatments are provided and by which type of service, could potentially help clarify complexities in service organisation. However, reporting by health providers alone would not capture patient experience of access to services. UK adult ADHD services continue to change and evolve, and these data provide only a snapshot in time of provision. Thus, any map will need to be regularly updated if it is to provide accurate information.

Future work

Developing optimum and economic service models for treating adults with ADHD remains an urgent priority. The Department of Health and Social Care NHS mandate164 highlighted areas for NHS improvement, with one focus being on providing better care for long-term conditions through improved integration of primary and secondary care services. There is a need to better understand barriers to management of ADHD within primary care and explore ways of supporting this integration. As discussed in the next chapter, a key problem for adults with ADHD is registration with a GP who is willing to prescribe medication if they require it. Future research could map availability of primary care practices to support adults with ADHD either through a shared care model or as standalone practices. Future research should also focus on differentiating between services provided by generic AMHS and those provided by dedicated services for adults with ADHD, so that apparent geographic gaps in provision can be more clearly understood.

Findings reported from the qualitative study also indicate that having a dedicated service and confirmation from a provider of treatments offered does not necessarily mean that the services are provided in practice. Therefore, research is needed to assess the capacity of dedicated services for ADHD, providing an overview of staff numbers and backgrounds, and the time and resources available for them to support their work with adults who have ADHD, as well as waiting lists.

Sample and recruitment

Semistructured interviews were carried out to gather data from seven sample groups comprising three groups of patients at different stages of transition (pre transition, recent post transition and re-engaged patients who re-entered adult services but did not directly transition), parents of children with ADHD who were similarly at different stages of transition, and clinicians from child and adult specialist services and GPs.

To seek diversity of transition experiences, a purposive sampling approach was adopted,170 with individualised recruitment strategies for each sample group. The sampling frames included different NHS regions, ADHD service models, patient comorbidities, age, years of professional experience and gender. We focused recruitment to ensure that we included some girls or young women, who are under-represented among ADHD service attenders given the higher prevalence of ADHD among males. 171 The inclusion and exclusion criteria for each group is available (see Report Supplementary Material 11).

Decisions about sample size were informed by requirements of the sampling frame, our experiences of previous studies on transition and wider methodological writings regarding the anticipated stage in data collection when ‘data saturation’ is likely to occur. 172–175 As advised by the NHS REC, we stopped recruitment once data saturation was reached.

Young people: identifying the population for study

As NHS ethics restricted sampling to currently registered patients, we could not recruit young people who had dropped out of treatment. The pre-transition group (group 1) were aged 14–16 years and attending CAMHS. The post-transition group (group 2) were aged ≥ 18 years and transitioned straight from children’s services without a break in service, whereas the group who re-entered services (group 3) had ceased service contact for at least 1 year (Figure 18).

FIGURE 18.

Three groups of young people representing different stages in the transition process.

Selection and recruitment of young people and parents

We aimed to recruit 20–25 young people for each transition stage subsample from across participating sites. We similarly aimed to recruit 25 parents who would be approximately evenly distributed across the three subsamples of young people. Recruitment of young people and parents was continuously monitored to ensure that it proceeded as planned and that the sampling frame was being evenly populated as we proceeded.

Location of recruitment

Five NHS trusts (listed below in bold type) were initially purposefully selected as recruitment sites to capture both geographical variation and different models of adult ADHD service provision. During the project, we were contacted by other trusts that wanted to support recruitment and we obtained R&D approval for 12 additional trusts:

1. SLaM.

2. Berkshire Healthcare NHS Foundation Trust.

3. Devon Partnership NHS Trust.

4. Coventry and Warwickshire Partnership Trust.

5. Nottinghamshire Healthcare NHS Foundation Trust.

6. South West Yorkshire Partnership NHS Foundation Trust (HRA approved 29 March 2017).

7. Dudley and Walsall Mental Health Partnership NHS Trust (HRA approved 20 January 2017).

8. South Staffordshire and Shropshire Healthcare Foundation Trust (HRA approved 13 January 2017).

9. Torbay and South Devon NHS Foundation Trust as a Primary Integrated Community for Devon Partnership NHS Trust (HRA approved 14 October 2016).

10. Leicestershire Partnership NHS Trust (HRA approved 11 July 2016).

11. Lincolnshire Partnership NHS Foundation Trust (LPFT) (HRA approved 11 July 2016).

12. Somerset Partnership NHS Foundation Trust (HRA approved 11 July 2016).

13. Sussex Community NHS Foundation Trust (HRA approved 11 July 2016).

14. Black Country Partnership NHS Foundation Trust (HRA approved 11 July 2016).

15. Leeds Community Healthcare NHS Trust (HRA approved 11 July 2016).

16. Leeds and York Partnership NHS Foundation Trust (HRA approved 11 July 2016).

17. Sheffield Children’s NHS Foundation Trust (HRA approved 11 July 2016).

On-site recruitment procedure

Each of the five original recruitment sites had an allocated research nurse to facilitate recruitment, while additional sites were similarly supported by their local Clinical Research Network. The recruitment strategy varied slightly for each site as we adapted it to the needs of each of the three groups of young people, parents, and the local context; however, to comply with NHS R&D governance processes, NRES and data protection requirements, the basic procedure followed the five steps described below:

1. Identification of eligible young people by treating clinicians.

2. Clinicians advised the research nurse on how best to approach the young person/parent.

3. Research nurse approached the young person and handed over the information sheet and offered to discuss the study and answer any questions. The young person was encouraged to discuss the study with their parents/carer before making a decision. Participants were informed that they could have a companion to accompany them during the interview.

4. Twenty-four hours after the first contact, the research nurse approached potential participants to seek consent to pass their details to the research team. Potential participants were given as much time as they needed to make this decision. If the patient or parent agreed, the research nurse provided the research team with the completed participant notification sheet comprising details about eligibility.

5. Potential participants were contacted by telephone, text message or e-mail by a researcher to arrange a suitable time and location to conduct the interview. This also allowed the researcher to attend the interview being familiar with the interviewee and aware of any safety issues.

Incentives

Incentives (£10 shopping vouchers) were used to support recruitment of young people. Drawing on evidence that respondents’ sense of choice and control affects study take-up,176 participants could choose how [face to face, telephone, Skype™ (Microsoft Corporation, Richmond, WA, USA)] and where they were interviewed. Bearing in mind the impact of ADHD on individuals’ organisational abilities, we tried to conduct interviews as soon as possible after recruitment and used text messaging to remind participants about their forthcoming interview.

Clinicians working in children’s services

Child and adolescent psychiatrists and paediatricians who took part in the surveillance study and indicated that they were willing to take part in an interview about transition formed the sampling pool. Purposive sampling was used to ensure a spread of geographical locations and types of service provision in the area (adult ADHD mental health services availability, specialised vs. generic). We aimed to recruit 15 clinicians.

Clinicians working in adult services or primary care

A sampling pool of adults’ clinicians was created using data from the surveillance and mapping studies. The surveillance study questionnaire asked for the intended destination of patients following transfer from their service. This information was used to identify and approach clinicians working in adult services. Similarly, participants working in adult services or primary care in the mapping study were asked to indicate if they were willing to take part in an interview. We aimed to recruit 15 adult mental health clinicians and 15 GPs. We also recruited GPs by advertising on Twitter, involving the NIHR Clinical Research Network and through the snowball method, whereby participants were asked to recommend other potential participants to approach.

Data collection

Semistructured interviews were conducted with all participants. Using the principles of the constant comparative method,177 data collection was split into three distinct phases so that interim analysis could inform subsequent recruitment and adjustments to topic guides. It also allowed us to stop the recruitment if data saturation was reached. The first phase ran from April 2016 to November 2016. There was a second phase from March 2017 to May 2017 and a third phase, which focused on GPs, and ran from October 2017 to December 2018. We reached our target number of interviewed parents in November 2016; therefore, no more notifications were accepted after this date. The exception to stopping recruitment during the interim analysis was for group 2 participants. Most sites found that the required follow-up of patients transferring to adult services to check that the young person had attended at least one appointment was more challenging than anticipated. Pausing group 2 recruitment may have risked negatively affecting this longitudinal element of the recruitment process, so group 2 notifications were accepted and these patients approached from April 2016 to May 2017. Following the first phase of data collection, topic guides were revised with some questions added to reflect learning from the interviews conducted and to focus on emerging themes; for example, questions were added to patient topic guides asking patients when they first realised that they might need support as an adult, and about the role of their GP. The third phase with GPs was introduced because of the prominence of reports about the role of primary care in the initial qualitative data collection from all groups.

Consent and confidentiality

Before the interview, the researcher discussed the study with the participant, who was then given the opportunity to ask any questions. Once the participant had agreed to continue with the interview, they were asked to sign the consent form. Copies of the study information sheets and consent forms for all sample groups are available (see Report Supplementary Material 12–17). Parents of young people aged ≤ 15 years were asked to consent to the participation of their child, and we also sought assent from the young person. Interview transcripts were stored on a university server. Digital recorders and any hand-written notes were stored in a locked cabinet until files were uploaded or notes scanned. Any potentially identifying information was deleted.

Content of the interviews

The semistructured interviews were conducted using a topic guide informed by the research questions, existing research and guidelines on transition, and discussions with our PPI group members and the SSC. All interviews were audio-taped and transcribed verbatim. The interviews with young people and parents covered the following topics:

• current and future medication use (e.g. reason for taking, what might make patient want to continue or stop medication in the future)

• current and future contact with services

• experiences of the transition process

• views on key elements of optimal transition (e.g. having a named contact, continuity of care).

The interviews with clinicians included the following themes:

• practicalities related to transition process (e.g. age boundary of the service, existence and use of transition protocol)

• pre-transition dropout

• key elements of optimal transition – continuity of care, parallel care, a transition planning meeting and information transfer

• involvement of young person, parents and/or other services in the process of transition

• personal experiences with good and difficult transitions

• re-entry (clinicians working with adults including GPs)

• management of young people in transition in primary care (GPs).

The topic guides for all sample groups are available (see Report Supplementary Material 18–24).

Analysis

Data were managed using QSR International (Warrington, UK) NVivo 11 qualitative data analysis software. Data analysis followed a framework analysis approach, an approach to thematic qualitative analysis that has been explicitly developed in the context of applied social science research. 178 This method facilitates systematic and transparent data analysis, allowing the researcher to move between levels of abstraction while maintaining clear links to the original data. 179 Figure 19 provides an overview. The approach allows the researcher to identify patterns or commonalities, as well as contradictions in and between participants’ accounts, and to explore and test explanations for those patterns. It is also open to external scrutiny, and the systematic nature of the process means that it can be replicated, which facilitates analysis by different researchers. Data from each of the six samples were analysed separately. In a later stage, findings were compared and integrated to seek consensus and differences in views and perspectives between the stakeholder groups. More detail regarding the analytical approach is available (see Report Supplementary Material 25).

FIGURE 19.

Overview of the different steps in framework analysis, illustrating researcher contributions.

Education

The interviews revealed a strong association between ADHD and its management, and the school environment and academic attainment. School was commonly the place where symptoms were first flagged as problematic and the rationale for medication was often understood as improving academic performance or behaviour in school, with medication breaks reserved for outside term time or weekends:

To help me get qualifications, get the grades I need, help me concentrate. Because I don’t take them at weekends.

Pre-transition patient 13

They’ve actually said that they don’t want him in the college if he’s not medicated . . . So we are caught between a rock and a hard place really. Because he wants to stop taking his medication. He hates being on the medication . . . if he’s not on the medication we can see it straightaway.

Parent 09

I mean we do obviously give drug holidays for weekends and children that are doing well during half-term and things, let them run a bit wild when it doesn’t matter, they’re not learning anything. Some of them can cope, some of them can’t.

Paediatrician 15

Like I say, for the sake of school, that’s what I was taking them for really. So, I was kind of excited, well not excited, but waiting to finish school so I wouldn’t have to take them.

Re-engaged young adult patient 07

Some clinicians in children’s services reported advising patients that medication was to be taken when needed and not necessarily related to education; however, the association with education meant that patients often assumed that treatment would end when school finished. This assumption appears to be reinforced by the timing of trials off medication. In line with NICE guidelines,36 clinicians in children’s services described trialling a medication ‘holiday’ to see if a patient can cope without medication, or if there is an ongoing need requiring transition to adult services. Although clinicians reported that this process was flexible depending on the complexities of patients’ needs, it typically occurred at the end of mandatory education. These clinicians reflected that the timing matched a desire expressed by patients to come off medication once school exams were completed; however, it could mean that if after trialling a period off medication patients wanted to restart their prescription, they may have become too old to return to children’s services:

Particularly once they are past GCSEs [General Certificates of Secondary Education] and they have done their exams, then we would try to wean the medication down and see how they manage without it, but over a long period of time.

Paediatrician 19

It depends on your young person, there are some who are 16 who you start talking about [adult services and transition] . . . You estimate what their trajectory is going to be partly depending on their functioning and all their other needs and their academic engagement, family engagement, their history, their responsibility . . . They tend to disengage from wanting to take medication . . . around 17ish . . . when they finish mainstream education, so if our ADHD kids are moving into more the college based or the apprenticeship based, that’s when they might say ‘I don’t want “meds” anymore’ and if they come off their meds then we would probably discharge them, if they haven’t got any other needs.

Child and adolescent psychiatrist 08

Those who were continuing on to higher education were typically more invested in continuing treatment and, therefore, were more likely to transition:

Some of them will be going to college. Those are probably the ones that are most likely to want to carry on medication . . . because they are more aware that they are not concentrating as well.

Paediatrician 11

If they’re not going to university, if they’re going into employment then it’s [referral to] GP.

Child and adolescent psychiatrist 08

However, young people who had recently transitioned reported seeing a future in which symptoms would improve once formal education was completed, a view also expressed by some clinicians in children’s services:

I can imagine it still [being an issue] because it’s just me, but it’s not going to be that bad if I’m in a job that I like and I’m not having to be forced to do something I hate. It probably won’t be as bad. But having to sit, that’s just what has been really difficult at college and school. So, I think it will get easier.

Transitioned patient 05

I think there’s a small proportion where the ADHD symptoms have genuinely stopped being an issue because they are in a situation where they are doing more of what they want to do . . . they have either left school or are leaving school, they are going on to something they are actively interested in, rather than something they are being forced into doing in the context of school, so they are not having problems in the same way.

Paediatrician 11

Many of the young adults who returned to services regretted their decision to stop treatment because they mistakenly thought they had ‘outgrown’ ADHD, or treatment was no longer necessary as they had left school. They reflected on the timing of transition decisions when they lose the structure of school and gain more responsibilities, including greater consequences if things go wrong:

The bottom line was you are 16, this is it, you’ve got through school. I think they targeted school as that was the battlefield that I need to get beyond to give me a step in later life and once that was achieved it was, yes, you can do it on your own, you don’t need us anymore. There was never any discussion about if you do need post-16 care, this is where to go, this is how to apply, nothing like that.

Re-engaged young adult patient 02

ADHD is different as an adult, and risks and all that . . . Being impulsive can have a bigger impact on you as an adult. So, when you’re a child there’s a bit more safeguards around you, parents, school . . . you’ve got these people round you. And also, you have less responsibility. But then when you’re older, and if you do something impulsive or don’t think it through, as with me, it can have a massive detrimental impact.

Re-engaged young adult patient 13

Parents and young adult patients with ADHD advised that part of accepting ADHD and being invested in continuing support and treatment was identifying strengths and finding a niche, such as a sport or looking after animals, regardless of continuing education:

That was the thing that saved me, is finding something that focuses my brain. Really enjoying something that focuses me makes everything else I do bearable.

Re-engaged young adult patient 21

Because she’s who she is and she’s sort of quirky and loud, she’s started getting into the music photography scene, so she’s been off and she’s been shooting bands . . . I think actually that would probably fit in with who she is. She probably wouldn’t quite fit into an office environment [laughs].

Parent 01

Child and adolescent psychiatrists and paediatricians described how education could play a significant role in transition, particularly if the patient had learning disabilities and/or attended a special school:

A lot of the handover I end up doing is actually to the further education colleges.

Paediatrician 22

I guess if they are in a special school the story is very different, and some of my kids are at special schools, then the process is usually led by education . . . From 14 plus I think people start talking about transition, there’s a transition team and the process is clear.

Paediatrician 02

Clinicians in children’s services described how patients moving area to start university or moving to new supported living arrangements could add a layer of complexity to transition; notably a lack of clarity over funding arrangements and clinical responsibility, including who was going to prescribe ADHD medication. The response to those moving area around the time of transition varied. In some cases, patients were transferred to waiting lists for adult services in their existing local area, some discharged patients to their GP and recommended help from university student health services, whereas others held onto their patients until they were settled in their new area:

It took me about a year and a half to transfer this 17-and-a-half-year-old . . . who was going to uni [university] . . . we weren’t clear what the funding arrangements were . . . I referred this one about 6 months ago and they still haven’t received the confirmation of funding from our CCG . . . it’s just paperwork and bureaucracy that tends to get in the way.

Paediatrician 05

Obviously, the GP won’t prescribe unless the psychiatrists are going to see him, so it landed up with a teenager going to college very much on medication . . . and nobody prepared to prescribe it. Well I can do it for so long, but you can’t start prescribing as a paediatrician for a 20-year-old that’s not in your care anymore. So, we did sort it, but it was very difficult. I think that group of children probably are the ones that land up in limbo because nobody is taking responsibility.

Paediatrician 12

So, what seems to happen is they leave our service, they go on the queue for the adults but don’t get seen by them and when they do, the appointment comes up when they’re off at college anyway.

Paediatrician 18

Medication

Whether a patient was being prescribed ADHD medication at the time of transition appeared to influence whether or not they were referred to adult services, with transition typically reserved for those continuing to use medication. Clinicians in children’s services explained that, although not a decision made in haste, in order to manage resources, patients off medication and without any other significant issues would usually be discharged to GPs:

Ideally if they weren’t on medication you should carry on seeing them, but it’s not going to happen in the real world . . . we don’t have the clinic space, so after they have chosen to go off medication, so you have maybe given them one or two appointments, after that you are going to have to discharge them.

Paediatrician 11

So, at 17 they’re going to have a view whether they’re going to be continuing medication or not in adulthood. So, if it looks like they are likely to want to continue medication then a referral is made at that point . . . If you don’t want medication the adult services won’t see you anyway so on you go with your family doctor . . . If you want to continue with medication there’s a psychiatrist who will see you. If you don’t want to continue with medication, you know, carry on. You’re on your own.

Paediatrician 18

The perception of clinicians in children’s services that medication was an eligibility requirement for adult services was reflected in other stakeholders’ experience of adult services as being medication focused. Adults’ clinicians typically reported that they are commissioned to provide only pharmacological services:

I think they just think that you are druggies and you want drugs. But that was not the case. I wanted to try and get some help.

Parent 14

All they [adults’ clinician have] done really is just met me twice, started me on the medication, seen how I’m going and then tell me they’ll see me in 6 months or a year to see if the medication is still working.

Re-engaged young adult patient 02

It’s the medication that gets you the access to the [adult] service. And if you have ADHD and autism or if you have ADHD and you’re not on medication and you’ve got autism and perhaps I don’t know Tourette’s . . . as well then you wouldn’t access services just because you have more than one thing. But if you had relatively mild ADHD perhaps on medication which you wanted to continue with then you would access services so there’s a bit of inequity there.

Paediatrician 14

The medication focus of services meant that a patient’s choice to stop medication also meant processes to transfer to adult services were not initiated; however, our data suggests that these may not always be thoughtful and future-orientated decisions. Treatment decisions were often described by patients as led by the clinician and parents who ‘know best’ or made to support short-term goals, such as to pass exams:

I just kind of say to do what’s best because really, I don’t know as much as she does about it. Even though it’s me who has it, they know a lot more than I do. So, I just think just let them just try.

Pre-transition patient 08

Do you think you’re going to continue to need support for it once you’re in your 20s?

I’m really hoping not . . . I mean to be fair the only reason I came for medication was to get me through college . . . I’m just about to finish. I mean possibly if I’d have found the right medication, I would be, but I’ve given up on that idea.

Transitioned patient 01

Numerous reasons were given for medication cessation. Some stopped medication as they finished education and ‘slid’ out of services without a conscious decision or action. Others stopped taking medication because of pregnancy or a desire to establish a career where ADHD medication is not permitted, such as in the military services. Medication was also stopped because of a struggle with side effects, such as insomnia, migraines, weight loss and dry mouth. For those who struggled, once short-term goals had been achieved, the ‘bad’ outweighed the ‘good’:

So, can you remember much about why you stopped going to the service when you were younger?

The side effects . . . I just stopped taking it all and then I just didn’t go anymore. Three years I was off [medication]. Because it affects your appetite and affects your sleeping and I was on sleeping tablets, but they weren’t even helping.

Re-engaged young adult patient 03

Yes, we get lots and lots of people who have dropped out of treatment for all sorts of reasons, sometimes because they’ve disengaged, sometimes because they’ve wanted a period without medication. Quite a lot of people seem to want to go into the forces . . . [they] try to white-knuckle life a bit without medication.

Adults’ clinician 06

The experience of patients in group 3 who were discharged after stopping medication but returned to services a few years later was reflected in the adults’ clinician interviews. The re-engagement with services very often followed a profoundly negative experience in their lives, which prompted them to question the influence of ongoing ADHD symptoms on their functioning and seek support:

There’s lots of people who decide they don’t want to continue with the medication. It often is the case and people will be referred back a year or two down the line saying, ‘Actually, things have got really difficult now and I need to rethink about medication’. That’s not uncommon at all.

Adults’ clinician 10

I just went to jail and even when I was sitting in jail I was sitting there thinking, ‘I’m here over something stupid. If I was on my medication I wouldn’t even be here’.

Re-engaged young adult patient 20

I did the stupid thing that all teenagers who know better do, especially when they’re on medication and they see that they are coping and don’t actually tie it back to the fact that it’s the medication that’s meaning that they can cope. I took myself off the medication. I lasted a good couple of years before anything went sideways but then it went sideways in a big way.

Re-engaged young adult patient 08

Clinicians and parents recognised the challenge of discussing treatment options during adolescence when young people were seeking greater autonomy. Both groups spoke of the difficulty of encouraging continuation of treatment when patients were struggling with side effects and views were expressed that it can take time and distance from services for patients to accept a need for external support to manage ADHD:

‘I don’t want to take this medication and it doesn’t make me feel alright, I don’t feel great on it, I don’t feel myself on it, I feel dulled down on it’ is often a comment – ‘and I just don’t want to take it and you can’t make me. I’m 16, I’m 15. I’m a whacking great 6-foot kid, what are you going to do about it?

Paediatrician 11

When you are thinking about young people, there is a tendency to (a) just want to be normal like everyone else and (b) to think well it will all be OK, I’m older now . . . I’ve come out the other side and now I’m going to go out to work and I don’t have to do all that school work anymore . . . it takes a little while before the person finally realises and then is prepared to acknowledge that actually, you know what, I’m not OK and I’m not managing . . . and by then people can be in really serious difficulties.

Adults’ clinician 14

However, patients who had not transitioned but re-engaged with services as young adults expressed a great deal of regret about their involvement in decisions. They reflected that, at the time, they thought they knew best, but wished that their consultant and/or parent had pushed harder for continuation of treatment and service engagement:

The clinician didn’t ask me why I stopped. If I knew what I knew today then I would never have stopped . . . I did not cope at all. I really struggled. And then obviously now with all the trouble that I’ve got now it would have been so much easier if I’d just moved naturally over to the adult ADHD. But I knew best.

Re-engaged young adult patient 14

It’s just that I didn’t feel that they were pressuring me enough to stay with them. After I said I don’t want to be with them they were like, ‘All right, fine. We can’t really force you’. They didn’t really force or, say ‘It will be beneficial for you to stay’. My mum was chatting but I wasn’t really listening. I was 16, 17 . . . Well, I assumed I was a big person. I know what’s right from wrong but I didn’t realise that I actually did need that service as I need help and now I realise that this is what I need.

Re-engaged young adult patient 20

All stakeholders expressed a frustration over the medication focus of commissioned ADHD services. Clinicians recognised the need to provide psychosocial support (e.g. life skills, coaching and psychological therapy) and include those who are unhappy to take or are refusing medication, but typically this was not available:

Unfortunately, medication has been at the moment the only reliable patch, for want of a better phrase, because I’ve not been able to get anywhere with any form of counselling.

Re-engaged young adult patient 08

I think we can offer support as far as medication goes. There’s nothing else. And I think that’s really poor . . . If they don’t want the medication, they can be passed back to their GP and then it would be up to the GP to refer them into adult mental health because any kind of talking therapies or any of that would have to come from them . . . Things like parent education and teacher education, which is so desperately needed, doesn’t exist here. ADHD equals Ritalin [Ritalin^®; Novartis Pharmaceuticals UK Ltd, London, UK].

Adults’ clinician 12

I mean to be fair with ADHD normally the hyperactivity has settled down by [transition], the impulsivity is there to a certain extent, it’s the disorganisation that’s a big problem and the emotional dys-regulation and also the emotional consequence of going through school having to take medication because of behaviour and struggling with social relationships, some of these guys feel quite isolated, quite angry, they’ve got very difficult family circumstances often as well. And so actually that becomes the bigger problem which medication doesn’t normally deal with anyway.

Paediatrician 05

Many of the young adults interviewed had actively sought out interventions such as cognitive–behavioural therapy, group or individual counselling, animal therapy, restricted diets (i.e. avoiding certain foods), exercise or meditation, or had tried cannabis as an addition or alternative to medicinal treatment with varying degrees of success. They discussed how the medication focus of services had meant that they had not known what other non-pharmacological options might have been helpful to have sought them out earlier. On re-engagement with services, they wanted a flexible approach to medication in which they could experiment with being off medication without losing support. They strongly expressed views that medication and mental health support were separate, and that psychological support should be available for adults with ADHD who are off medication:

So, it’s only from getting the help that you realise that you needed it, in a way. So loads of things changed for me: my behaviours and relationships, everything. It had a huge impact on me, having that CBT [cognitive–behavioural therapy], but I wouldn’t have known how much impact that had before doing it, if you know what I mean? And it would’ve been nicer, it would’ve been better to have that CBT or something a few years ago.

Re-engaged young adult patient 13

But some people who don’t like to take the pills I reckon they should at least get some . . . psychological help. Like going to a therapist. Getting trained how to not to go to those urges, like fidget or think before you speak.

Re-engaged young adult patient 05

I said I still want help. I don’t want this to end. All because there’s no medication, I don’t want this help and support to end because it is good.

Re-engaged young adult patient 16

Parents wanted services to help their child learn appropriate strategies for managing ADHD as an adult. A need recognised by some adults’ clinicians, who described undertaking specialist training or joint working outside their limited commissioned services to provide a service to better meet patients’ needs:

I want him to have some help to understand how he can sort himself out and how he can control it himself. There’s only so much I can tell him or he can find out himself . . . driving, going into the workplace and getting some more qualifications is our next stage. So yes, consistency and someone to actually help us manage his ADHD in the next few years.

Parent 05

I’ve been working with somebody that’s got a diagnosis that didn’t want to take medication . . . I worked with her just to do some awareness with her and her mum round the symptoms regarding ADHD . . . she didn’t want to take the medication because it didn’t agree with her and she felt it made her worse so we just worked on how she could manage her symptoms. Me and my colleague . . . went on some CBT [cognitive–behavioural therapy] therapy for ADHD . . . and through that we’ve been doing informal CBT stuff.

Adults’ clinician 07

Ours is more medication and if we can, we use other services . . . The CPN [community psychiatric nurse] has got CBT [cognitive–behavioural therapy] expertise so she will give that . . . probation can offer life skills . . . The OTs [occupational therapists] will do the normal OT [occupational therapy] . . . Accommodation issues will be the social worker will deal with that . . . we’ll just filter them to whoever can help. Generally, we’ve found it’s worked but sometimes we get stuck with very difficult cases, how to handle.

Adults’ clinician 08

Parent involvement

There was a shared belief across different samples that parent involvement supported transfer to adult services. Reflecting difficulties associated with ADHD symptoms, parents (typically mothers) continued to take an active role in adolescent and young adult patients’ engagement with services and treatment. They arranged, transported and accompanied patients to appointments, explained information provided by clinicians and advocated on behalf of patients, ensured that they ate and washed, as well as helping them to learn and implement coping strategies:

I’m there when they make the appointments, but my parents will make the appointments, my parents will do the prescriptions.

Pre-transition patient 09

I usually sort everything out for him.

If he’s got appointments one of us goes with him . . .

Yeah his memory is so poor he don’t remember nothing. So that has to be done for him because he just wouldn’t . . . And spending an hour or so in a car with [son], is a complete nightmare I’ve got to say. It doesn’t matter who takes him, whether it’s a taxi, whether it’s you. He will just flip at the slightest thing.

Parent 20

Because often these kids with ADHD . . . actually still need quite a lot of guidance and with their organisation by their parents so that their parents are more actively involved than routinely.

Child and adolescent psychiatrist 07

Medication management was particularly highlighted as a role parents adopted: sorting prescriptions, observing effects of medication trials and ensuring adherence. Although, as already described, patients were considering short-term goals, the parents that were interviewed perceived an ongoing need for support, with most viewing medication as beneficial to support their child and the wider family:

I have to keep a track of whatever she is taking, the medication. She’s not very good at taking medication . . . because she’s now a young person who is busy out with friends and staying out, she’s not very good, so I need to keep track of her from that perspective.

Parent 03

Do you think her symptoms or the effect that has on her, do you think that will change as she becomes an adult?

No.

You think it’s always going to be there?

Yeah. The thing is when she first got it, I got told ‘Oh she’ll grow out of it’ and I know adults with ADHD so that didn’t make much sense . . . I think in a way it’s learning to live with it. And some things I think she’s doing very, very well in and other things I think we’re going to have to keep an extra eye on that.

Parent 17

I don’t think there’ll ever be a time when he’ll be able to control it to that level. That’s what it is. It’s like an Incredible Hulk . . . That’s all I can explain to you. Until you’ve been through it and experienced it, and seen somebody kick off, and think that’s your child and he can be that nasty, and that angry, and that vicious . . . the main thing in his life that he needs is that little white tablet. It sounds pathetic, I know, but he needs that, and we need him to have that, for our sanity as much as his own.

Parent 07

Parents felt that an emotional immaturity associated with ADHD meant that there was a greater need for continued parental guidance into adulthood. They also suggested that, because of the ‘fight’ required to access and retain health-care support, parents’ drive to overcome obstacles was required during and after transition to see their child fulfil their potential:

[Child psychiatrist] wanted [son] to take kind of ownership of it and responsibility for it. But because of the nature of his condition even when he wants to take responsibility for things they don’t get taken responsibility for . . . he doesn’t see that he needs to take medication almost daily to just get on with tasks that other people don’t even think about . . . I think at some point they kind of need to acknowledge the limitations of the condition to access the service independently like an adult.

Parent 15

Do you know what you would do if you couldn’t get the help you needed for [son] once he’s turned 18?

I would make a big . . . I would just go and sit there, because I’m not willing to get to the stage where he’s not allright. But then you do feel bad doing that and you do feel like you are sort of overstepping the mark. I think we learned quite early on that sometimes thinking that everything is being dealt with and they are busy and you are waiting your turn and they’ll get in touch, it’s not always the case.

Parent 14

This ongoing active role of parents was also recognised as essential by young people who transitioned:

I’m at that stage in life where I’m perfectly capable of looking after myself, I can cook for myself, I can cook, I can clean, I can do all my washing up. But because my brain works at 50,000 miles an hour, I find myself so mentally exhausted from existing that I wouldn’t manage without her looking after me. It’s not that I’m not capable, it’s just that I don’t have the energy in my brain to even consider starting to do that sort of stuff. My mum has always been very involved.

Transitioned patient 01

I wouldn’t have [moved to adult services] myself because no matter how much research I do, I’m not good at confrontation and that is all that tends to happen with my experiences with mental health care. I normally just give up at the second hurdle because I know from my experience it never works properly.

Transitioned patient 21

Parents and clinicians in children’s services expressed concern over differences in care models between child and adult services, notably, a lower tolerance of missed appointments and loss of direct communication with parents in adult services:

I think the issues of transition for our kids would involve the concept of sort of family-based support which would be different from adult psychiatry . . . I think we see quite a lot of problems when individuals are seen just as individuals not in the context of those who have been supporting them up to then.

Paediatrician 16

So, I’m sending him in to see this person. I’m waiting in the waiting room, because he doesn’t like going anywhere on his own . . .  he’s in there and I’m going, ‘What have you talked about?’ And to be fair, he didn’t really want to talk about it. Basically, nothing . . . My son has gone off the rails a bit and once this 18 months is up, I’ve got no control . . . no one gets it. Unless you are bringing up a kid with this problem, no one gets it and all they think is they are an adult, it’s up to them and they [adult services] won’t speak to me anymore.

Parent 23

In CAMHS we will tolerate a level of disengagement . . . still prescribing and seeing them when we can . . . but not having a massively engaged discussion with them . . . we tend to do that via parents or carers. Whereas in adult services that isn’t tolerated . . .

Child and adolescent psychiatrist 08

However, the adults’ clinicians interviewed recognised the importance of working with families and described welcoming parent input (e.g. arranging and attending appointments to support patients), as long as the patient assented. Attaining assent for continued parental involvement prior to the first appointment was acknowledged as a challenge, as was negotiating with families and communicating with patients who were used to parents taking the lead:

When they come to us, we welcome families but it’s entirely up to the young person to make a decision about this . . . We would not automatically send the clinic letters to parents; we send them to young people. This is all-round difficult.

Adult clinician 04

My experience is if the parents are still involved, the transition is often better, smoother, because the parents remind them to take their medication and if they’re ‘good’ parents I think that they learn to take themselves back . . . give more remote support . . . But then there are . . . parents . . . who are really overprotective and don’t let their children go, or can’t let them go, and this then creates problems for those who just pull out because they have enough.

Adult clinician 16

As I say, it depends if they are invested or not, because that’s the hardest thing. When you get them come in and they’ve got their hoodies on and they’ve got their earphones in, or they’re on their phone and they grunt at you, it’s really hard to get them to engage with you . . . I think paediatrics and CAMHS service are very much led by the parents, so all of a sudden, they’re an adult . . . and I’m directing my questions to them. They really struggle with that sometimes . . . it’s trying to get the parents to loosen those reins a bit as well. You have to be very diplomatic . . . especially around medication, really difficult. The young person possibly doesn’t want to be on meds anymore and the parents say, ‘If you are not on your medication you can’t live with me’.

Adults’ clinician 15

Clinicians and parents noted that some parents may be better resourced than others to advocate for their child’s need for ongoing support. A number of parents expressed a view that they would be prepared to ‘go private’ to ensure continued access to support:

There’s a group of kids for whom they have challenging amounts of dopamine transition, but they have a fantastic family, a fantastic neighbourhood and a really dynamic school and actually it comes out as all positive. Whilst if you put that same kid into a dysfunctional family, in a dysfunctional area, in a dysfunctional school it would be all negatives.

Paediatrician 21

Because I work with special needs kids I understand a little bit of the educational side of the system. A lot of people don’t. Some of the parents that I’ve worked with, they haven’t got a hope because they don’t understand the system, they don’t understand what their rights are or where they need to go for help or what to do and haven’t got it in them to be pushing.

Parent 18

Preparation for transition and adult life with attention deficit hyperactivity disorder

Patients reported different levels of readiness for the transfer to adult services. Some felt ready for and welcomed the change in care model and environment, others were overwhelmed by it and saw adult services as less caring, and others were ambivalent. For those who felt ready, they reported being pleased to be more involved in their ADHD management, feeling listened to and taken seriously:

In the child ones I feel like they’re more accommodating to your needs a little bit more. A little bit more like ‘How are you going to cope with your exams? Have you spoken to your school to get extra time?’ But I feel like in the adult one it’s a little bit less, it’s like you need to just find out for yourself kind of thing.

Transitioned patient 05

When I was in CAMHS, that was more them telling me what to do rather than listening to me, so I felt more understood in that appointment with the doctor there in adult services and I felt like I was in a bit more control which to me was good.

Transitioned patient 21

The importance of patient familiarity with adult services before transition was described by a number of interviewees across sample groups; however, the experience of preparation for transition and for adult life with ADHD was varied:

I describe ADHD as trying to pay attention to everything at the same time. And if you’re doing that in a completely new place where you don’t know anything, that’s exceptionally overwhelming, I completely shut down, I feel incapable . . . Just getting to go in there and just seeing it, even if I didn’t have an appointment with someone, even though I just spent 10 minutes sat in the room that would be such a massive help.

Transitioned patient 01

I know from the adult services that some of our people we do refer just don’t attend. That’s why we hope to get this new thing going where we meet . . . a sort of joint appointment . . . because they’ve been very used to us, often for very, very many years and it’s a big jump to meet someone new.

Child and adolescent psychiatrist 01

It’s still a bit hit and miss . . . 60% feel well prepared and that they’re adequately experienced, 40% of people say that they didn’t know about what they’re supposed to know . . . what’s supposed to happen, which is not happening, is that our CAMHS colleagues or paediatrician colleagues start preparing people for that transition process and explain about how adult services work in a different way and, potentially, start that graded reduction of input. So, we are probably not doing that very well . . .

Adults’ clinician 02

Patients in group 1 (pre transition) knew little about transition; they may have been informed about a potential future change of service provision but could not recall it. Experiences of group 2 (post transition) were mixed. Some described feeling unprepared for using adult services, whereas others described feeling informed about the transition process and had attended a joint meeting with their new adults’ clinician. Some interviewees reported that clinicians in children’s services described their own reservations about the limits of adult services to patients. Patients who felt informed about what was going to happen reported that their transition went well:

I didn’t get told about anything; I didn’t know there was any support for adults. And all I heard about support for adults is no doctor really wants to do it, because there’s no money in it.

Re-engaged young adult patient 05

We had a bit of a bad experience with one who was expecting the same service as they were getting from us . . . And they were quite irritated that they didn’t and now I’m making it clear to patients that these guys will not look at your ASD, they won’t manage that side of things . . .

Paediatrician 05

How did you feel about changing?

Alright. Because they prepared me before. It’s not like I came one day . . . ‘Where’s everything gone?’ At least I knew what I was going on, instead of walking in, not knowing what’s going on.

Transitioned patient 17

Parents of pre-transition patients typically did not know at what age transition would occur. One parent had assumed child services would continue to provide support until the end of full-time education. Another assumed CAMHS went on indefinitely and reflected that discussion of transition and remit of services needs to be repeated and reinforced with patients and their families over time. Other parents reflected on their inability to help prepare their child for the move to adult services when they are not themselves informed:

It didn’t really dawn on me that they’d get passed onto just the mental health team. And or I suppose maybe it goes back to his GP . . . they probably have gone through everything that you’re asking, if I knew what they’d said to me, if it had made sense when they first told me, I may have retained it but you just don’t retain it because you’re at the beginning of all this other stuff that you’re thinking ‘Oh right, so what I’ve got to do, I’ve got to get an appointment and then there’s this type of medication, that type of medication’ and you forget that they say ‘He will only be with this team until he’s 18 and then we’ll whatever’.

Parent 15

What do you think the best or the worst things will be about her leaving CAMHS and going on to another service?

Well, the fact that we don’t know what that other service is. It’s this thing called adult services. What is it? It’s like something out of an Orwell novel. What is it? We’ve had no information, we’ve had no contact. In the meantime, she’s going through a really vulnerable time of change. She’s potentially going off to university in a month or so. Where’s the support? What happens if it becomes too much for her? Who does she turn to? There’s just nothing. I’ve said to her, ‘We’ll just have to go private’.

Parent 01

The interviews with patients who had re-entered adult services without transition (group 3) highlighted a need for clearer information for discharged patients about what to do if symptoms deteriorate and support is required. Those who dropped out and re-entered services and those who had been on waiting lists for adult services described information about how to make an appointment and where to get medication, in case difficulties develop, as essential:

So, what might have helped before we decided to drop out, [is] if they gave us some information for later on in life . . . because obviously no one can predict the future, so you don’t know what’s going to happen around the corner. So, it might have been just nice to give a heads up of what we could do if we really found an issue.

Re-engaged young adult patient 06

If I was saying to a 16-year-old, ‘You need to find out. Don’t stop child services until you’ve got the next step forward’. That would be my big thing.

Re-engaged young adult patient 18

Although some clinicians in children’s services described providing this information, others acknowledged that it could be limited, with patients simply directed towards their GP if support is needed in the future. The limited nature of this information was also the experience of parents:

Do you talk to them about what happens kind of later on in life or a few years down the line in their mid-20s if they decide they need more support? I probably would, but it probably wouldn’t be a lot more than saying ‘You’re off your treatment now, I hope everything goes well, you need to go back to your doctor if you wanted to talk about this again’.

Paediatrician 14

They said ‘He’ll be fine and he’s managing’ and at that time I didn’t even think that if we need to come back, where do we go? I thought maybe because he’d seen the group, he will automatically [get] transferred to that route if ever needed . . . So I just assumed that OK fine, maybe he’s got the gist of it how to handle himself.

Parent 25

The accounts of patients, parents and adults’ clinicians consistently indicated that children’s services had provided limited or no information in relation to ADHD as a long-term condition. Some adults’ clinicians reported being surprised by patients’ (and parents’) rudimentary knowledge of ADHD when they first attended adult services appointments. They also reported that young adult ADHD patients are often troubled by a negative perception of themselves as stupid or lazy:

Did anyone ever talk to you when you were 15/16/17 about what to expect with your ADHD over time? No . . . It was all about the now. It was all about what’s happening on this day, that day.

Re-engaged young adult patient 16

What I find most shocking is that when you ask them what is ADHD and what does that mean to you they have no idea . . . And they say, ‘I’m just bad, aren’t I?’ or ‘I’m worthless, I’m useless,’ . . . they don’t actually understand what ADHD is . . . what we’ve tried to do with all our service users with ADHD is for them to become their own experts in ADHD. So if they have a better understanding of what ADHD is and how ADHD affects them then they are more likely to be able to feel they have more control and put stuff into place. But a lot of the youngsters that come have no idea.

Adults’ clinician 15

Reflecting the discussion in Education, interviews with patients and parents suggested that, instead of discussions of possible long-term needs, they are commonly told that ADHD is a condition one grows out of:

Well I rang up CAMHS and they said ‘Well he’s 18’ well I never knew nothing about that because you weren’t really given any information . . . I saw a lady at CAMHS first and she said ‘Well he’s 18 so there’s nothing really we can do’ and told him basically to grow up, it’s time he grew up.

Parent 20

The way it’s put across is basically you’ve got this condition that means you act in a way that is unacceptable by society, therefore you need to take this drug that is going to change who you are to make you fit in to the way that we think you should be. Every kid that I’ve spoken to with ADHD does not know what it is.

Re-engaged young adult patient 02

Parents felt that it would have been helpful if clinicians had explained the restrictions that ADHD medication might have on specific employment. A particular concern across all interviews was unanswered questions about the effects of long-term use of ADHD medication:

One thing that I wasn’t aware of until just after the medication started though was perhaps possible effects of employment, like police and joining the military . . . it would have been useful to have known that.

Parent 22

Not knowing what the long-term effects are. That still bothers me now. It’s an issue that I’ve got now. I’m on a very low dosage at the moment and I try my hardest not to take it when I don’t have to.

Re-engaged young adult patient 02

This expensive drug, it’s a drug of abuse, is this something people are going to take lifelong? It seems like some kind of guidance is needed, otherwise it just sits on our record and they carry on the medication. It seems a bit open-ended.

GP 11

Many of the young adults in group 3 believed that a better understanding of ADHD might have prevented them from dropping out of services. Some described the shock they felt when they found out ADHD was a long-term condition:

So I do feel I just need to be generally more informed about ADHD, about the services that are on offer and that would be much more useful to me, because now . . . well I do accept, with some resentment, that this is something that I will have to deal with for the rest of my life, so if that’s the case then I want to be as prepared as I can be.

Re-engaged young adult patient 07

I explained to [consultant] I didn’t really understand why I was having these issues . . . I kept saying to him, ‘I know I’ve got ADHD, but I’ve grown out of it. I did really well at college’, and all this. He just said, ‘ADHD is actually a lifelong condition but people tend to grow out of the hyperactivity side of it, or it fades away a bit, but there are actually other things that you will struggle with as a result of attention deficit disorder’. That was horrible. I got really upset. I started crying in his office because to me I felt like I’d overcome a massive barrier in my life and then to be hit with the fact that, oh actually, no, this is something that you are going to have to deal with for your whole life.

Re-engaged young adult patient 02

Clinicians in children’s services reported presenting ADHD as a long-term condition, but many acknowledged that their practice could be improved. A few referred to uncertainties about ADHD diagnosis, which may make clinicians cautious in presenting ADHD as a long-term condition:

I was seeing cases that were 17 and a half where there had been no discussion about what was going to happen to them in adulthood . . . But now I’m having those sorts of conversations from a very young age and I find it interesting for those that are on medication when they’re 13, they start wondering are they going to be on it for a long time? And they start “kicking off a little bit and saying ‘I don’t want to take it’”. So then I use the opportunity to have a discussion about ‘Okay why are you on this medication? Are you going to be on it for a long time? And if not, what are the alternatives?’ . . . I take the opportunity to talk about the long-term consequences of ADHD.

Paediatrician 05

I suppose what I’m trying to say is that for something like ADHD where the diagnosis has a whole lot of subjective socially bits coming into it . . . We can have this conversation, it’s not like me saying ‘You must carry on with this insulin for the rest of your life, you might benefit from this now, but you might not we don’t know’.

Paediatrician 14

A lack of dedicated appointment time for preparation for transition was highlighted as a barrier to transition. One clinician described how their current information technology system does not flag when a patient is approaching transition, which affected their preparation:

Some of these families are just moving from crisis to crisis and the appointment is spent more trying to support them through the crisis or specific difficulty, meaning that there’s less time to talk about transition or plan the transition. I think my personal practice at present is that it’s been quite late.

Paediatrician 20

In your opinion do you feel like transition is working quite well in your trust in your area?

I don’t think so because I think a lot of people aren’t thinking about it. And I can understand that. You’ve got long waiting lists, you’ve got more patients really in theory than you can handle . . . It’s not going to be sitting in your mind all the time to look at their date of birth and work out exactly how old they are . . . With our clinical commitments at the moment, we’re two and a half consultants down and that’s probably the same with everybody. The clinical workload is huge and you keep thinking ‘Right I’ll do that next month and I’ll do that at the weekend’ and then something else comes up.

Paediatrician 12

Adults’ clinicians typically placed responsibility for preparation for transition on clinicians in children’s services and speculated that a lack of preparation reflected a lack of knowledge of adult services; however, some felt that familiarity with adult services could happen after transition rather than before. Some clinicians in children’s services thought that adults’ clinicians were better placed to discuss ADHD in adulthood:

To be able to do transitions of children’s ADHD cases into our service [would] have basically been a different clinic each day just doing transition clinics, not doing the actual work of people who are waiting for a year anyway. So, we need to sort of focus. We can manage that expectation at the first appointment, say, ‘This is what our service provides, this is what we are going to do’.

Adults’ clinician 05

The people from adult services who know what more of the challenges are in adult life, because we tend to forget about some of those. We do ask about drugs and alcohol and whatever else you are doing but we probably tend to forget a bit about . . . actually really possibly working as a steeplejack isn’t the best idea in the universe if you have got ADHD, that sort of thing.

Paediatrician 11

Clinicians and parents described a need for better information to be provided about adult services and ADHD in adulthood. The need for this information to be in an accessible format for young people with ADHD was emphasised:

A psycho-educational process where they are prepared to either look at some information, material, or attend educational sessions around the ADHD . . . that would be useful in terms of preparing them for adult life and what ADHD could mean in adult life.

Adults’ clinician 13

We don’t have a website, adults don’t have a website. Our young people . . . they look a bit horrified when you hand them booklets these days. [Laughs.] They all want to go online and Google [Google Inc., Mountain View, CA, USA] it and stuff like that . . . They generally do want to just look at a picture and go, ‘OK, that’s Doctor So-and-so, that’s who I am going to see for my ADHD meds’. . . . We would love there to be better written information for the young people as well, for them to kind of take away and digest and look at.

Child and adolescent psychiatrist 13

I don’t think [son] would look at anything. I don’t think he’d care enough to read about it. He’d watch a video. If there was a little YouTube video [YouTube, LLC, San Bruno, CA, USA], or if somebody came to talk to him that had been through it, again a mentor system, so somebody could say, ‘Right, this is what happened to me. It might not necessarily happen for you but it might be similar’. I don’t think he’d bother to read anything.

Parent 26

Accessibility

The lack of equivalent adult service to which ADHD patients could be transitioned was highlighted as a barrier to transition. Many interviewees reported a lack of adult ADHD service provision in their local area, with one clinician in children’s services describing it as:

. . . almost like winning a lottery if you’re actually seen and something was done about it.

Paediatrician 15

Well we have a transition protocol that involves a structured interview through the clinical nurse specialist service and then of course is the issue of what do you transfer to? We have a process of addressing specific issues that are relevant to a certain stage of life, but we don’t have a transition process to a specific adult service.

Paediatrician 16

There’s not really a lot out there for adults with ADHD . . . because a lot of things with ADHD you can grow out of with age. So, I don’t know if a lot of people just have that perception of when you turn 18 everything goes away.

Re-engaged young adult patient 07

Finding who could support him in terms of the life skills stuff that he needed to know . . . was quite hard . . . I again, haven’t got anyone medically, apart from the GP that I can transition him over to . . . You can do transition, you can try and empower the young people and their carers but if you haven’t got people engaged within adult services or services commissioned within adult services to be the other side of the transition then I think that is more of a challenge.

Paediatrician 09

Both clinicians from children’s services and GPs reported that it could be challenging to find the appropriate service(s) to which to refer patients with ADHD. No local provision could mean no transition, or long delays while funding was sought for services outside the CCG region:

OK, have you encountered any real difficulties with transitioning them?

Only the practicalities of knowing who it is . . . every single time somebody was too old to come back to see me, there would a question of asking the GP who the right person locally is and they would normally suggest somebody who would turn out to say ‘No it’s not me because I don’t cover that area’ or ‘that’s not me because this young person doesn’t have a learning disability’.

Paediatrician 14

Generally, with ADHD we just get stuck to know where to go next . . . I have done a little bit of phoning today actually to try and get hold of the mental health teams for adult services to find out if there has been any development but I have just been passed around between four different people this morning and didn’t get any answers and there’s nothing on the websites for our local services about any ADHD clinics . . . I think we all find it difficult to really know what’s out there even within the children’s services let alone the adult services. So, I’d say no we probably don’t do that very well because we don’t actually have much information about what is available.

Paediatrician 19

We cover a massive area. And we also have lots of people from out of areas . . . [One neighbouring area] doesn’t have any adult services and every time anybody from [there] is actually referred to us and is declined, which makes me wonder what on earth happens to all the children in transition, where do they go?

Adults’ clinician 15

Lack of local provision also meant further to travel for appointments and for medication. Travel was highlighted as a challenge for ADHD patients, with young people reporting that without their parent’s involvement they would struggle to attend appointments. Complicated or time-consuming travel requirements to access services could, therefore, affect engagement with services:

I’m hoping to get transferred to ‘Place Y’ because ‘Place A’ [where the young adult is currently registered] is quite a lot to get to monthly for me while I’ve got a full-time job.

But they didn’t do an adult service then?

No. It stops at 18. He’s now referred to ‘Place A’. [Patient] Oh it’s too far. [Mother] We went once and the journey was just horrendous. We are going again but we’ve got someone taking us . . . But we will then have to go to ‘Place M’ to get his medication. Well that’s another journey.

How long is that to get to M?

That’s over an hour.

Transitioned patient 21

I was in college. I had just started college and I thought I was doing really well . . . I don’t need it, I hate the constant appointments, because I used to have to travel to [place] for my appointments. It was getting a bit too much and I was like, do you know what . . . I’ll be absolutely fine and just stopped the medication. Rung them up and said, ‘Look, I don’t want any appointments anymore, I’m going to do it by myself’.

Re-engaged young adult patient 14

I think the fact that our service is less able to go out, to as many sort of geographical locations, so people are having to travel further, and I think we do quite a lot of people at that stage because yes, having been to quite a local clinic to see someone they know and then realising they are going to have to travel quite a distance to see somebody new.

Adults’ clinician 06

In some interviews, clinicians in children’s services also described a reluctance from young people to be referred to AMHS and having to tackle stigma associated with mental illness with their patients. A few parents also questioned the fit of ADHD with mental health services:

The kids would obviously say, ‘I’m not going to go to where all the nutters go’ . . . I would spend hours trying to persuade this healthy, normal, mentally healthy young person with ADHD or autism that they had to turn up to a transition clinic in the loony bin. It may have been grossly untrue but . . .

Paediatrician 21

It’s a bit daunting . . . like someone had obviously graffiti or something on the wall. It was a bit like . . . and then there was people walking by, staring at you that were being walked about by guards.

Transitioned patient 13

You can see that apart from getting stuff done there’s nothing wrong with [son], he’s very popular. He’s got loads of mates. He’s really polite and patient. So, he’s got loads of good qualities that I think everybody wants their child to have. So then to see him going under mental health where my sister goes, she’s got horrific mental health, it’s really, really bad . . . And so to think [son] is using that same service is a bit odd really.

Parent 15

Typically, patients and parents viewed the accessibility of adult services in a negative light compared with their experience of child services, with concerns reported that adult services were less easy to contact and less flexible with appointments:

I have tried with adults; I rang them obviously the other day and told them to ring me back and they never did.

Transitioned patient 10

What do you think the best or worst things might be about that change into adult service?

If we were to lose what we’ve got now, if we were to lose the communication . . . I think certainly the knowing that [clinician] will always say, ‘If there’s anything between meets and you want to pick up the phone, I’m on the end of the phone’. She makes that quite clear. And I think if we were to lose that, just knowing that they’re there. There’s been the odd occasion where I’ve had to ring for something and they’ll always come back within 24, 48 hours. If they don’t know the answer straight away, somebody will come back, and . . . they’ll offer an extra appointment.

Parent 19

Adults’ clinicians explained that limited time and high workloads meant there were often strict policies in place for appointment non-attendance. Some clinicians recognised the impact of these policies on young people with limited organisational skills, describing how they were adapting practices to respond to patient needs:

The reality is we just cannot have DNAs [did not attends]. We have so little resources to deal with the demand, so if people want to be seen they really need to make an effort . . . if people don’t turn up, we send them an opt-in letter, saying ‘Sorry you couldn’t come but please let us know within 14 days that you wish to be seen again or continue’. . . A lot of people, because by definition we are dealing with disorganised, forgetful population, they would give us a ring and say, ‘Oh yes, I know, I completely forgot about this’ . . . so we would give them another appointment.

Adult clinician 04

If I reduce someone’s medication down, then I contact them by phone about a month later just to see how they are getting on with the reduced dose and then whether we need to adjust it anymore. And that can go on for around four or five appointments and then they come back in for a face to face . . . It just saves them having to keep coming in . . . and we get less DNAs [do not attends] that way because people are more engaging with us and they don’t think they have to give a day up for college or whatever . . . They also know that . . . if they have any concerns then they can always contact me and then I can contact them on the phone.

Adult clinician 15

Remit

Adult clinicians described the fragmented design of adult services in comparison with their perceptions of child services. Interventions provided were often restricted by limited remit of commissioned adult services. For example, a number of clinicians mentioned that their adult ADHD service could not prescribe medication for coexisting sleep or affective disorders:

They don’t have the one umbrella of a service like CAMHS . . . [they] do the ADHD, do the anxiety, do the family therapy or whatever, they come to us and . . . I think that might be a difficulty, that they want to talk about their anxiety as a comorbidity or they want to talk about their low mood, which is fine, we need to pick up on that, but I can’t treat it, they’d need to go back to primary care for that or IAPT [Improving Access to Psychological Therapies] . . . The other thing is melatonin is an issue. A lot of young people come in with melatonin then once they are out of children’s services GPs have stopped it. But we are not commissioned to treat sleep disorders, we are commissioned to treat ADHD, so we’ve been told we can’t prescribe it.

Adult clinician 05

Some people are referred to us with a diagnosis of ADHD but the medication they are currently on isn’t ADHD medication, so somebody coming to us on an antidepressant. And risperidone for aggressive behaviour as well . . . if what they need to do is stay on this medication then unfortunately it’s not a referral that we can accept, because we can’t take anybody, we can’t have people on the caseload that aren’t on medication for ADHD because that’s all we are paid to do.

Adults’ clinician 06

Clinicians described the limited remit of adult services as a shock for patients used to the broader focus of child services. Some expressed views that the lack of joined-up working made it very challenging for patients with ADHD to navigate services. These views were supported by interviews with patients, who found the limited remit difficult to understand:

They are kind of used to just having the one therapist with us and so it is a bit more hard to organise the transition when you are sort of saying you need to go here for that bit and here for that bit.

Child and adolescent psychiatrist 13

A lot of the other aspects of my health are completely separate, well in the NHS are completely separate even though they are not. So, I didn’t really have a chance to talk about much apart from the ADHD and the Asperger’s. [Young person has had anorexia and has self-harmed].

Transitioned patient 21

I did think it was odd that an organisation that’s there for adults with ADHD can’t prescribe my medication. I don’t really think that’s acceptable, because the GP didn’t want to know . . . It’s probably to do with money because it’s quite expensive.

Transitioned patient 09

When trying to find the appropriate service to transition patients to, a common experience for GPs and clinicians in children’s services was the response ‘we are not commissioned to do it’:

We try and refer when they’re adults and then they say there’s no service . . . If there’s mention of learning disability, we’ll give that a go, or if there’s mention of mental health, we’ll give CMHT a go. We’ll see how we can plug these people into a service, but generally that doesn’t really work.

GP 13

Adult psychiatrists . . . are saying they are not commissioned to provide a service for ADHD . . . They are stretching all the services and having to make savings. You don’t have the luxury if you are not specifically commissioned to do something but it’s just not fair on the patients.

Child and adolescent psychiatrist 03

In addition to ongoing medication use, the interviews suggest that eligibility for adult services was based on complexity of need and presence of comorbidities. Higher thresholds for adult services than for child services meant that ‘stable’ or ‘straightforward’ cases were likely to be discharged to GPs rather than transferred to an adult service:

Because we are not urgent because it’s not severe, it affects his life. I understand they see children that are an awful lot more urgent than him, but I think it’s people like [son] that will fall through the net and be left to cope on their own.

Parent 05

He was below the level of illness at the point that he needed transition that would be accepted through secondary services, so then I ended up coming up with a transition plan with his general practitioner.

Child and adolescent psychiatrist 10

Clinicians in children’s services also described getting adult services to accept highly complex cases as challenging. Sometimes the tight remit of adult services could leave those with the more severe and complex problems without a service:

It landed up with me having to write some quite rude letters. I don’t mind that being quoted to say that ‘you can’t leave this child in limbo’. Nobody would prescribe, the GP wouldn’t prescribe, the consultant wasn’t overseeing it. Psychiatry wouldn’t take it on because of the learning disability, social services said his IQ [intelligence quotient ] wasn’t low enough for them to take it on . . . by 19 I managed to sort it out, but it took a lot of hard work.

Paediatrician 12

[Describing a loked-after child with complex emotional needs and conduct disorder] she is one of those that doesn’t fit in anything, any kind of box, but she is massively needy . . . I’ve no idea when I am going to be able to discharge her because I have no way of knowing where she can go, who is going to have the remotest capacity to look after her.

Paediatrician 22

Care Programme Approach (CPA) processes, which include the appointment of a care co-ordinator, were described by some clinicians as administratively burdensome but a need for someone to liaise with other agencies and co-ordinate support for ADHD patients was posited:

CPA is probably underused in children’s services across our trust largely because . . . people don’t feel it adds anything. The young people would get the same number of reviews which are normally held multiagency anyway. So, putting them on CPA is a bit of an admin [administrative] task rather than a clinical task. It doesn’t make any difference to the care they receive.

Child and adolescent psychiatrist 08

We do a lot of screening of those referrals to really make sure that we get this segment of this adult ADHD population that we are commissioned to look after . . . There’s limited funding . . . The idea really is to not provide care co-ordination, so patients who are too complex or too risky . . . who would need a care co-ordinator or involvement of other HSEs. So, we are not staffed to provide the service for these patients . . . So, they then have to go to the community mental health teams and the community mental health teams say ‘No, no, we don’t have a pathway for complex adult ADHD patients’, so they go in circles.

Adults’ clinician 16

The cut-off point for access to adult LD teams was particularly highlighted by clinicians as being difficult for patients, families and services. Although clinicians reported that transferring patients with ADHD and coexisting LD to adult services was typically easier because of established LD services, patients whose LD was borderline fell into gaps between services. Many clinicians in children’s services reported transition for patients with ADHD and autism as similarly challenging, as they would not meet eligibility criteria for adult services:

There’s a subgroup of those with ADHD who have borderline learning needs who have quite a lot of social deprivation . . . We were clear that they needed adult services input because there were ongoing needs for post 18, but we’ve struggled to get them accepted by adult services . . . so their IQ [intelligence quotient] is hovering around 70, so 71 or 72, so they’ve got significant learning needs . . . [but] adult learning disability services won’t take them because their level of functioning is too high . . . but our general adult effective team really struggle to take these young people in, because they’re well below their normal client functioning. So, these kids really fit in a bit of a between the two.

Child and adolescent psychiatrist 08

Sometimes it’s not appropriately sent to us because sometimes they’ve got a lot of LD as well and it may be more appropriate for them to be actually referred to a community adult LD service, but I’m also very aware that there’s a really hard criteria for them to get through and that can be problematic for parents as well, especially if you’ve got someone with LD who has got ADHD and is also extremely aggressive.

Adults’ clinician 15

So that would be a big, big, a big issue, is that we have a few who are ADHD and ASD and, yes, like I say, they probably need a wee bit more support but don’t quite meet the threshold.

Child and adolescent psychiatrist 13

As with learning disabilities, interviewees reported that a psychiatric comorbidity could potentially make it easier to have a service to transition to. However, they noted that adult mental health teams may be configured to manage episodic illness rather than long-term conditions, such as ADHD:

It depends what their other needs are. If they’re hitting 18 and they’ve only got ADHD and they’re off their medicine, then that’s probably them done. But if they’ve got secondary mental health needs then they’d stay in the service for those needs . . . But there’s no one to hand them on to if they don’t have very clear defined mental health needs.

Child and adolescent psychiatrist 08

Adult services are very much moving towards episodes of illness and whilst you are poorly you are seen by psychiatry and then you will be discharged, whereas there’s still a fair bit of monitoring of well people that happens in CAMHS and that can be tricky.

Child and adolescent psychiatrist 10

Clinicians reported that ‘pure’ ADHD without any comorbidities is not that common in routine clinical practice. Many expressed a view that highly specified teams create gaps in provision for patients with complex needs. The varied needs of patients with ADHD led some to suggest that a specific ADHD transition protocol would not work as there would be no adult service that would suit all:

I have been around in the NHS for a long time and my experience is that when . . . someone is looking after one arm, another person is looking after another arm, left ear, right ear . . . it creates gaps and this is what is happening . . . I think locally mental health services are restructuring again, constantly restructuring . . . What happens when people have comorbidities, its mind blowing, and I think it’s actually a problem with then creating more gaps.

Adults’ clinician 04

I am dreading him . . . changing over services, because I know what mental health services in [local area] are and I know how awful they are at the moment . . . I work in the field. I have to battle to get my service users mental health services . . . I have had to sit at A&E [accident and emergency] for 7 hours . . . waiting for a psychiatrist because we haven’t been able to take him to an appointment because they won’t take him onto their books because he doesn’t fit into any of their boxes. He doesn’t fit in the memory clinic, he doesn’t fit this clinic, he doesn’t fit that . . . and they just kept on shunting him over until he became so acutely unwell, and I am not looking forward to that for [son].

Parent 28

In some ways it’s positive that an ADHD service was set up and commissioned but in other ways it’s actually unhelpful because people would have been seen in general services . . . but now because they all get signposted in the ADHD service and everything gets attributed to ADHD they sometimes get less response in this service because our service is so overwhelmed and such a wait.

Adults’ clinician 10

However, this did not mean that access to specialist ADHD staff was not welcomed. Across the interviews, specialist training and increased competence in working holistically with presenting difficulties was deemed important:

It’s absolutely vital to have support that comes from a knowledge of what ADHD is really, because lots of people think they know what ADHD is and astoundingly in some cases know either almost nothing or have an entirely erroneous view of what it’s all about and that really can cause a lot of problems. So, it’s really important for people to be properly trained and have knowledge of what ADHD really is and what ADHD isn’t.

Adults’ clinician 14

He’s got social, emotional problems and behavioural and learning difficulties . . . I think it all comes into one circle really. I mean, you could find something that would help them out for one thing but then another thing would come in and you’d have to find another way to work with that as well.

Parent 09

I think that’s a problem with mental health nursing across the board, because although we’re expected to work with people with dual diagnosis, we don’t, really . . . we really don’t work with many people with ADHD and mental health. Sometimes we do a few with Asperger’s, and autistic spectrum disorders, but . . . I think that’s a competency issue across the board for mental health nurses, that actually, we don’t do it enough to be good at it and recognise it, and then what we do is we try and shoehorn a set of symptoms or presentation into a mental health diagnosis that feels comfortable, which is why we get the emotionally unstable personality disorders, and why we get the conduct disorders.

Adults’ clinician 01

Handover practices

Adults’ clinicians reported that their experience of handover of patient information from child services varied. Although detailed patient information could be provided, handovers could also be very limited:

Some clinicians are really good, they would phone us and we’d say, ‘OK, send us all the relevant information, documents, reports, whatever, from your clinic’ and they would do it, but very often it’s requesting some information, not getting it.

Adults’ clinician 04

So, the paediatricians write us a letter, at usually [age] 17.5, which will say ‘this person has got ADHD and they’re on ritalin’. It’s always the same. There is no indication of how that was diagnosed or when. Well we try and get hold of their notes but sometimes they’ve either been archived or they’re on a different site and they’re medical, they are not mental health, so we can’t access it which is really unhelpful . . . What we end up doing is set out in the NICE guidelines, the architecture is we have to kind of reassess them really, do a full history.

Adults’ clinician 12

Having access to the same case files and using the same paperwork as child services was a reported facilitator to transition. Access to up-to-date patient information was challenging if referrals were from different health trusts or there was a lack of patient engagement prior to transition:

We’ve got the same electronic health records, so we can access that. We don’t access the paediatrician stuff because they are in a different organisation . . . it helps especially with transition . . . I get a bigger picture before seeing a person of what’s been presenting, so that’s helpful, whereas . . . liaising with CAMHS or whatever or phoning them up . . . I wouldn’t have time to do that for every person, so I just wouldn’t do it.

Adults’ clinician 05

For people that are not exactly from our area, to get any information it’s close to impossible . . . it’s kind of very brief, or there is absolutely nothing apart from ADHD being mentioned in a letter, sort of random letter. So, information is not very easily obtainable, and this is what adds to the pressure because we would have to really assess someone to know what is happening and what is the impact on someone. It’s not easy.

Adults’ clinician 04

I think the faces of the people that have had a child in the service from the age of five, when they come in and I say, ‘I’m going to be honest with you, I’ve got this one piece of paper’, they are really quite shocked by that . . . I think, ideally, we would like the last appointment with the previous service to have . . . [provided] an explanation about the service that they are going on to and also to have a final assessment . . . some people get referred having not attended their last planned appointment . . . And that’s really difficult.

Adults’ clinician 06

Limited or out-of-date clinical information could lead to reassessment. Although some adults’ clinicians reported not having a reason to doubt existing diagnoses of ADHD, others felt that it was important to reassess to understand how symptoms are presenting as an adult and the degree of severity. Some adults’ clinicians and GPs reported a mistrust of diagnoses, because of a lack of access to initial diagnostic records and a current care plan. For GPs, this mistrust confounded concerns about prescribing controlled medication for adults with ADHD:

Sometimes . . . we look in their notes and we think well, actually, I don’t know on what basis you ever really were prescribed these drugs, it’s not clear from your notes that you ever had a proper assessment.

GP 14

None of the ones who had the ADHD diagnosed as a child have any ongoing follow-up or any plan that I’ve ever seen. You do end up questioning the diagnosis, whether that diagnosis just becomes a non-diagnosis at 18, if there is no plan and no follow-up and no management plan.

GP 11

This mistrust could be picked up by patients and have an impact on engagement with services. Patients and parents questioned the handover of patient information and valued not having to retell their history. There was a sense from some patients that the ‘reassessment’ in a new service might not recognise the impact of persisting impairment from their ADHD, focusing instead on severity of symptoms:

She [consultant in adult services] just . . . kept saying things like, ‘Well your ADHD is not that severe’. It’s never been measured on severity . . . I feel like it has got a huge impact on my life and she just said, ‘Oh well, it doesn’t really do anything’. It’s like, ‘I just won’t give you medication’. I was like, right, OK. So, I’ve been given this diagnosis and you can’t do anything to help me, so what was the point of having that?

Transitioned patient 10

I don’t know how much my doctor from the child’s place told the one from the adult’s place, it didn’t seem like he knew everything . . . So, it doesn’t seem like they’re working together that well.

Transitioned patient 5

When we went last week [to AMHS], it was so refreshing and so nice . . . the most refreshing thing was, ‘I’ve read your notes, mate’. Because every time you see anybody, you have to start right from the beginning and go through everything.

Parent 21

Joint appointments with both services present or telephone case conferences were viewed as helpful handover practices, whether on a formal or on an ad hoc basis. However, because of demands on time because of high workloads in both child and adult services, clinicians reported that typically these processes were reserved for complex cases:

We have started to hold joint transitional clinics . . . And that seems to have worked really well, there’s a visible and a tangible handing over . . . witnessed by the patient and their parents . . . We’re also able to ask a lot more specific and detailed questions to which we are much more likely to get answers than doing that over the phone or in writing. So, it’s a very worthwhile process and we aspire to rolling that out in other areas.

Adults’ clinician 13

If it’s a consultant who knows me or I know this consultant, gives me a ring, gives me a heads-up or is asking . . . this informal contact sometimes, it’s actually sufficient . . . I think this transition concept, transition process, should be a bridge, slight overlap between children and adult services.

Adults’ clinician 04

The current protocol is that if you felt a joint handover was really needed, a kind of complex case, then you can do that but it’s not routine. So initially when the [transition] panel was set up, the hope was that it would be routine that everyone would have a joint appointment with their CAMHS worker and their adult worker as a kind of handover but that just hasn’t worked out resources . . .

Child and adolescent psychiatrist 13

Clinicians in children’s services also reported not knowing what happens to patients after transition, with few data, if any, passed on to them or collected to monitor transition outcomes:

I’m not sure that I would know if they’ve dropped out after transition . . . I know that nobody has rung me up to say . . . and I wouldn’t always check that they had been seen, honestly.

Paediatrician 09

I don’t think anybody keeps a record of whether the ones that transition stay with the service. We have talked about that a lot, how we would love to know, are they still with them 6 months later, are they still with them a year later? As far as I am aware, nobody collects that data.

Child and adolescent psychiatrist 13

Default role of the GP

Across the interviews, there were numerous examples of child services discharging patients to GPs rather than transitioning to adult secondary services, and adults’ clinicians explained that the bulk of their ADHD patient referrals came from GPs and not child services. Some clinicians in children’s services felt that they had no choice but to discharge to GPs, as there was no-one else who could co-ordinate the transfers to the relevant appropriate fragmented adult services and that it was important to highlight gaps in services:

So, he turned 18, she’d got rid of him.

When you said she got rid of him, do you remember the last appointment?

Literally we just had a letter saying, ‘Now he’s 18 he’s referred back to his GP’.

Parent 23

[Child services] will send a letter saying the age is now out of their hands. But they never actually transfer care to adult ADHD services.

GP 04

So, the overall co-ordination that you’re used to with kids, the GP becomes the overall co-ordinator . . . So, these young people do have a problem in that they’re so used to us co-ordinating care and overall managing them and then suddenly they get to 18 and it’s back to the GP who hasn’t got the time or the expertise to take on our role.

Paediatrician 12

I think previously we would try and do what we could to refer on to another service and persuade adult mental health services to take them, we are now just passing those back to the GP because I think it needs to be really highlighted back to the commissioners in terms of what service is needed.

Paediatrician 19

GPs were also reported as assuming responsibility for care when patients were in ‘limbo’ between child and adult services. This could be the result of long waiting lists for adult services’ appointments and/or gaps in local provision where, for example, the remit of child services finished at 16 years and adult services started at 18 years, or there was no appropriate adult service to transfer to:

You get that sort of situation where you are too late to get something from CAMHS but too early to get something from the adult services and then you’re left in a limbo situation and if you have really significant issues with your ADHD . . . it’s easy to see how a young person might end up in the criminal justice system before anybody in the health-care system gets a chance to actually formally diagnose and really get to grips with it.

Adults’ clinician 14

Until services are properly commissioned, I think there’s going to be an unmet need there. It’s a real problem for primary care because they feel like they’re having to manage things that they don’t necessarily feel comfortable . . . or feel like they’re giving as good as a service as the patient should be getting . . . I think it’s the picking up the patients that’s probably the issue, rather than CAMHS dumping them. I think it’s just that there’s a lack of service in the adult age range, but that’s just my perception.

GP 12

Some parents described how families ‘fell into a black hole’ after child services finished, often with no idea of what was meant to happen or without anyone other than their GP to contact during transition. They questioned the timing of transition at a time of change in a young person’s life and explained that being in limbo could mean symptoms worsened. Some clinicians in children’s services described how they held onto patients with complex needs or offered ongoing ad hoc support to the patient, family or GP when needed to ensure that they were not left in limbo:

The GP’s been amazing, bless her. She doesn’t know what to do. She’s referred him and they just did an assessment and then, ‘We’ll try and find some help’, and then you hear nothing for 6 months and in the meantime my son is smoking dope until it’s coming out of his ears, which he knows makes it worse.

Parent 21

I do have a few who are a little bit more complex or maybe they have got other social issues or safeguarding issues that I’ve tended to hang on to, so I’ve been looking after them for several years.

Paediatrician 19

I’ll put on the letter to the GP that I’m quite happy to supervise, provide the specialist support whilst they’re in the interim so that the whole thing doesn’t crash.

Paediatrician 18

How long did you have to wait as well to get an appointment?

Probably 6 months but I was still seeing CAMHS in the interval, I wasn’t left, because CAMHS didn’t allow that. But I should have been, if you put it that way . . . She refused to shut my case. My case still isn’t shut. They won’t shut it until they know that they are going do the right thing. They just haven’t yet.

Transitioned patient 10

The time between the last child service’s appointment and the first adult service’s appointment varied from a few months to 2 years. Adult services took different approaches to patients trying to re-access secondary care support; some fast tracked patients with a history of ADHD and child service use, whereas others treated all as new referrals, which then meant longer waiting times:

So, there’s a backlog. There’s like 220 people on the waiting list . . . and this is where the problem is, because he’s going to be well into 18 and a half before his name comes up . . . As I said, with his sister we were still waiting 5 months after she was 18 and I’d ring up CAMHS saying, ‘Well, could you please chase the people who you’ve written to? Can I chase them?’.

Transitioned patient 03 [mum]

We see them often coming back when they start studying at university and realise that actually they struggle . . . and ask if the GP can restart their ADHD medication, which the GP can’t because the patient’s now an adult and needs to be seen first by the ADHD service. And then they end up on a waiting list which is again quite unfortunate. We still have quite long waiting lists for assessments in the adult ADHD service.

Adults’ clinician 16

Some GPs took a pragmatic approach to treating patients in limbo between secondary care services. Others felt strongly that prescribing and monitoring ADHD medication was outside their role, even with additional training. For some GPs, this was linked to concerns over the risks of prescribing without specialist oversight. Although some accessed specialist advice through virtual systems or informal relationships with colleagues in secondary services, for others it was accessible only via lengthy referral processes:

You’ve got a family and patient that are suffering, so it was just weighing the risks and benefits really and whether they can afford to wait or actually they did want something to happen . . . [so I] used the dosing that was safe as per BNF [British National Formulary] guidelines . . . and then just closely following up with the patient.

GP 12

I think the role of the GP should be managing their primary health needs and not their mental health needs . . . My personal view is that this is not my job. This should be done by somebody else who knows about it – because they’re proper drugs, not something that I would like to prescribe.

GP 13

Letter from secondary care says, ‘please prescribe this – re-refer back if there is a problem’. No recognition of the fact that there’s months and months worth of waiting lists if you do actually want to refer them back because it’s not all going swimmingly well . . . [it would] be really useful to have fairly quick access to advice . . . on what we could do if things were unstable . . . some support to tweak things which I don’t think we should be doing ourselves.

GP 01

Childrens’ and adults’ clinicians, patients and parents reported variable experiences of primary care. Some families had found their GP’s help invaluable. There were also reports of clinicians supporting GP prescribing while the patient was waiting to be seen in a secondary care service; however, shared care protocols between primary and secondary care were not always implemented, causing concerns about continued access to medication. Stakeholders discussed a number of perceived barriers to shared care and primary care prescribing, including GP workload, funding of prescriptions, responsibility for medication monitoring, different ADHD medication licences for children and adults, and beliefs and knowledge around ADHD. The issue of licensing was also alluded to by parents, who reported that pharmacists had advised them that they could not keep fulfilling ADHD medication prescriptions into adulthood:

We’ve come to a working agreement that we will support GPs in prescribing medication for ADHD if they can demonstrate to us that the [patient] was under a reputable service or an NHS service before, that there is a history of a sound diagnosis follow-up and a stable medication. We would then support GPs in prescribing until we are able to see the young person.

Adults’ clinician 13

The much-vaunted shared care agreement with the GPs has never actually been done. GPs had not signed up to it . . . of 17 GP practices, I think two or maybe three will prescribe, the rest don’t. And they will happily have prescribed for them when they were under 18, happily, because it came from paediatricians, that’s a whole other story. But with us, no they won’t do it.

Adults’ clinician 12

Our own GP, he flatly refused to prescribe stims [stimulant medication], he just said, ‘I’m not doing it’, and it kept going back to the paediatrician . . . he doesn’t really agree with ADHD meds. And I do see why, I think he’s sort of doing it from a dad point of view, but he’s got three daughters but he’s also a GP and, from a patient perspective, that didn’t help me because it started me thinking, well why, what does he know that I don’t, what should he be telling me and why should I not be giving them to him? Then you are stuck.

Parent 14

Secondary care clinicians largely reported that continued specialist oversight was important. In particular, individually tailored medication plans and support of underlying impulsive behaviour was considered to be a specialist role:

I give them much more options in planning their medication, like we could do a combination of long acting and short acting . . . that works really well. People do come back and do see me, and we talk about it and we change the meds and see how they go . . . with the GP they couldn’t do that.

Adults’ clinician 12

Stimulant medication is amber, meaning it has to be specialist overseeing, so GPs cannot take on prescribing responsibility. So, it’s structurally built into the system locally. Which is yet another reason why it’s critical that the adult services have sufficient capacity.

Paediatrician 18

In relation to the issue of limited capacity within specialist services, however, some adults’ clinicians and GPs believed that GPs could manage cases where patients were stable and there was no comorbid mental illness:

I’ve got a couple of people that are really stable, and I’ve just said that I’m going to see them again and then . . . we are going to pass the care on to the GP . . . Not everybody that we get from that transition period needs that ongoing service for a year, otherwise we’d never be able to discharge people and take new referrals.

Adults’ clinician 07

I think with a bit of experience, I’m sure we could manage . . . because you’d just basically titrate it against the behaviour . . . It’s not actually a toxic drug as such.

GP 08

Discussion

The interviews provided a wealth of data about ADHD and health-care services for patients with ADHD. The overall finding is that the experience of transition from child to adult services for young people with ADHD is highly varied. For some it is straightforward, for others challenging. The qualitative strand of this study suggests that transition between child and adult services for ADHD patients depends on how invested stakeholders are in the process and the architecture of services.

Conclusion

The qualitative study found that a number of factors influence transition of ADHD patients from child to adult services. The varied needs of ADHD patients make transition to an equivalent service for adults difficult, and there is currently a lack of patient understanding of ADHD as a long-term condition. Reflecting the results of the surveillance study, the findings of the qualitative study suggest that further exploration is needed about why only some patients with an ongoing need make the transfer to adult services, alongside any attempts to improve the quality of transition processes. Although the recommendations set out in the NICE guidelines were largely agreed upon by stakeholders, the experiences collected confirm that further work is needed to ensure that these recommendations are delivered in practice. Future research could explore models of practice where NICE recommendations are being delivered successfully.

How many young people with attention deficit hyperactivity disorder need and access adult services?

The surveillance study (see Chapter 3) and the triangulation with the electronic case note review addressed this question. After adjusting for non-response and case ascertainment, our estimate suggests that between 270 and 599 per 100,000 young people aged 17–19 years will need continued medication for ADHD in the UK. The association of ADHD with certain population characteristics, such as deprivation, male gender, age and ethnicity,197,198 implies that commissioners and service providers should consider how these estimates may need adjusting to their context.

It is essential that these estimates are regarded as a minimum level of the need for transitional provision for several reasons. First, surveillance requires an easily operationalised and unambiguous definition of need that applies similarly to CAMHS and community paediatric services. Given the NICE guidance for specialist oversight of medication for ADHD,36 we followed only those who needed and wanted to continue their medication. This group constituted only a small proportion of those with ongoing need for support. Data from UK primary care suggest that the majority of young people prescribed ADHD medication when aged 16 years stopped receiving prescriptions by the age of 18 years. 132 Of those who stopped their prescriptions, 7.6% had resumed them after the age of 20 years, and resumption was associated with referral to AMHS. 133 Indeed, the CATCh-uS qualitative study (see Chapter 5) suggests that many young people do not fully understand the potential of ADHD to be a long-term condition or perceive medication as being necessary only in relation to school. These commonly cited reasons for dropping out of services imply a need to support young people to develop greater awareness of the impact of ADHD on their lives and strategies to manage it. 43,196 Indeed, current guidelines would recommend reassessment at the point of transition as part of transition planning, which could prompt such discussions. 67,122 A recent systematic review of transition for long-term conditions in paediatric services suggests that effective preparation should start in the mid-teens, with transition completed by the age of 18 years. 199 Our qualitative work suggests that this recommendation is rarely followed, despite its inclusion in the NICE guidelines.

Second, our qualitative work replicates other studies in indicating a consensus about the need for non-pharmacological approaches as well as medication. 130,196,200 Our estimates obviously do not include those with ongoing problems who wish to access psychosocial interventions only. Finally, as a minority of children with ADHD are treated by specialist health services, some young people are likely to present in adulthood for the first time as their social situation or life experience undermines their ability to cope. For example, only one-third of children with ADHD in the first British Child and Adolescent Mental Health Survey accessed CAMHS over a 3-year period; the equivalent figure for paediatric services was 15%. 100 Although the severity of difficulties predicted access to services in childhood,171 the implication for commissioners and service providers is that some childhood ADHD is missed, therefore, adult ADHD services need to be able to diagnose as well as manage ADHD to support those who present in adulthood for the first time; this group are also not included in our estimates.

Reports from paediatricians and child and adolescent psychiatrists indicated service age boundaries that were most commonly around the age of 18–19 years; the optimum age for transition to be completed. 199 The reported age boundaries in CATCh-uS ranged from 14 to 20 years or more, with greater variability reported by paediatricians than by psychiatrists. Access required attendance in full-time education for some 16 and 17 year olds, which implies a service gap for some of this age group. Our qualitative data echo others in suggesting that, as a result of their difficulties in school, young people with ADHD are more likely than their peers to be out of education at this age, particularly those who are living in disadvantaged circumstances. 67 This is one of several factors that emerge from CATCh-uS and which implies that current service structures may amplify disadvantage; private health care was most often accessed to continue with further and higher education, but would not be affordable to all. Moreover, these data were collected during a period of austerity within the UK, which affected mental health services and support for those with special educational needs disproportionately.

Paediatricians and child psychiatrists reported low rates of continuity of care via the surveillance study. 95 This may represent a failure by the clinicians involved in sharing and retrieving this information or delays in offering first appointments, but our follow-up period extended from 3 to 6 months beyond the age boundary. Arguably, longer gaps represent discontinuity of care. Referral (75% referred, 63% accepted) and first attendance (only 22% were known to have attended their first appointment at AMHS) were key points of drop-out, and, by implication, potential targets for intervention. 95 These findings echo the reluctance of CAMHS clinicians to refer, as reported in the TRACK study,39 as well as the CATCh-uS qualitative study and an allied systematic review. 58 Clinicians fear that cases would not be accepted, were concerned about raising false expectations or did not know where to refer. 58,72 Our qualitative work also suggests that familiarity and clear information about adult services might encourage attendance, in line with recent evidence, as well as the strong wish by those who had dropped out of services that they had received better information about ADHD as a long-term condition and more encouragement to remain engaged with services. 43 Models that have been reported but, to our knowledge, have not been evaluated, include joint clinics where practitioners from adult and child services work together with the young people approaching transition, or a transition team or officer work between services to support young people across the gap. 72,201

Current level of service provision

As we anticipated, our multi-informant mapping process (see Chapter 4) indicated an uneven distribution of services of all kinds for adults with ADHD, which implies that at least some discontinuity of care is explained by lack of provision. Furthermore, our qualitative study indicated that the process for re-entry into health care for those who needed it was often protracted and difficult. A wide range of services were reported, which spanned dedicated or specialist services, generic AMHS, prolonged access to CAMHS or community paediatric services, private health care and the voluntary sector. One implication of continued attendance at children’s services beyond the age boundary is reduced capacity for younger children to be seen, and potentially suboptimal care for young adults still being seen in child services. The recent NHS plan recommends selectively moving to services that support young people from 0 to 25 years, and neurodevelopmental disorders with their impact on maturation might be such an example. 202

The relative merits of the provision of care for adults with ADHD within generic AMHS or dedicated specialist services are a current issue for debate within the field, largely unsupported by empirical evidence. 203 The training, experience and availability of professionals who understand ADHD is arguably more important than their qualifications or the setting in which they work. 130 Our findings also indicate the practical obstacles that can impede engagement with services, for example where adult services are at a distance from home. This problem is more likely with highly specialist tertiary services, which are necessarily provided at regional level.

Service users and carers were more likely to report alternatives to both dedicated and generic AMHS, particularly private health care and the voluntary sector. In contrast, generic mental health services were mostly identified by clinicians alone, which raises the question of whether services users were able to identify and access them or whether or not commissioners were aware that support for ADHD was being offered. If not formally commissioned, adult ADHD services might be particularly vulnerable to decommissioning, particularly in the context of service pressures arising from austerity and the current psychiatric workforce crisis. That our finding that LD services were reported to treat adults with ADHD was not confirmed by our direct contact with trusts is confusing. This may be explained by comorbidities, which were high in our study, which may provide a ‘ticket of entry’ to such services, which then provide support for ADHD in an adult that they have accepted for other reasons. 95,130 These interesting differences emphasise the importance of seeking multiple perspectives when mapping service provision and suggest a lack of clear information. The latter was identified as a barrier to transition in a recent review,58 as well as an important theme arising from our qualitative work.

Clinical guidelines state that the following provision should be available for adults with ADHD: transitional care, assessment and diagnostic services, drug titration, monitoring and review, and psychoeducation. 33,36,41 Both the mapping study and our qualitative work suggest an overwhelming focus of services on the provision of medication for both children and adults, whereas our qualitative work replicates the consensus that psychoeducational treatment options are essential. 36,130,196 Furthermore, our qualitative findings imply that the medication focus of services meant that a decision to stop medication often resulted in the loss of all support, which was compounded by the view that the purpose of medication was to support access to education. Importantly, even among dedicated adult ADHD services, very few services provided the full range of services recommended by NICE. 36

The CATCh-uS qualitative work clearly indicates that GPs are involved in the care of young adults with ADHD in transition by default, without being included in planned transition processes. This may be influenced by the patchy distribution of services reported in the mapping study. Although training and improved access to relevant information might support GPs in this task, some would argue that the variable and complex presentations of ADHD may mean that unsupported GPs may miss important comorbidities, even in ‘uncomplicated cases’. 130

Quality of transition and influences on continuity of care

Transition in health care is conceptualised to extend beyond the simple transfer of clinical responsibility, namely to support a young person into a new life stage in a way that optimises their health and function. 37 As our findings emphasise, transition often coincides with other major life changes, such as leaving or changing type of education, starting work or moving out of the parental home. Young adults are often deprived of familiar support networks while facing increasing demands in several domains simultaneously. 72,204 The difficulties of ADHD may render transition especially challenging, while impaired function during adolescence is particularly detrimental to subsequent health, educational, occupational and social outcomes. 67,196 At its simplest, optimum transition has been characterised by planning, the transfer of information between the child and adult service, joint working and continuity of care. 35,38 Despite setting such a low level of expectation, both our surveillance and our qualitative findings suggest that few young adults with ADHD experience optimal transitional care.

Studies of transition across different long-term conditions suggest that some generic issues undermine smooth transition, all of which emerged in our qualitative work to some extent. These include accessing adult practitioners, negative beliefs about adult care, lack of knowledge about the transition process and lack of self-management skills. 43,44,58 The difficulties of ADHD reduce the ability to organise and regulate the self, which means that developmental capacity may be out of step with chronological age, and provide particular barriers to young adults trying to negotiate adult-focused services. 95,130 As the qualitative work indicates, the cultural gap between child-centred services, which expect parental involvement, and adult-oriented services, in which patient autonomy is assumed and prioritised, can be problematic for young people in transition and their carers. 58,72 Our findings indicated the critical role of parents as advocates, with obvious implications for those who lack such support, such as care-leavers. The balance between parental control and a young person’s autonomy needs to shift over time. The management of this process is arguably more familiar to those working in children’s services, as are the inevitable tensions between the needs and wishes of the young adult and those of their carers,43,72 Young people’s participation in treatment decisions needs to be balanced with the duty to protect their interests according to their developmental capacity. 43 This implies that there are two potential therapeutic targets: how prepared the young person is for transition, and their ability to manage their ADHD themselves.

Role of primary care

Our qualitative findings suggested that primary care plays a pivotal role in the care of young people with ADHD in transition and beyond, whether in a planned fashion or ‘by default’. The rising number of ADHD ‘graduates’ leaving children’s services will place increased demands on primary care provision, with implications for future patient care. We need to better understand GPs’ knowledge and training needs, and to develop and evaluate models of shared care. This work would benefit from a mixed-methods approach involving a similar combination of national surveys and case studies as in the current study.

Although training and support tools for GPs may improve primary care management of ADHD, and are sometimes presented as a possible solution to a lack of specialist services, the options and evidence base for such interventions are not well established. 205 These research gaps can hinder efforts to develop and evaluate services, and to optimise outcomes, and could be addressed in various ways, including the mapping of primary care prescribing practice and shared care arrangements for adults with ADHD; case studies of service models; a systematic review of training and interventions; linked data set analysis to gather more information on pathways between primary and secondary care; and a Delphi study aimed at developing consensus on options for better supporting GPs.

Evaluation of transition models

There is similar lack of evaluation of different ways to support transitions. 201 Although some suggest that continuity of care for young people with ADHD could be supported via technology, the benefits have yet to be empirically demonstrated. 196 Similarly, psychoeducational techniques that have been suggested as vehicles that might improve self-awareness, or organisational, problem-solving and decision-making skills, need evaluation for effectiveness and cost-effectiveness. 196 Our findings suggest that the extent to which young people are prepared for transition and their ability to manage their ADHD themselves are key areas for development in transitional services. 43,44 These studies would involve intervention development and evaluation along the lines of the Medical Research Council complex intervention guidance, whereas service models would require mixed-methods evaluation. 166

Economic evaluations

These could provide a compelling business case for adult ADHD service provision. Scandinavian patient registries suggest that continued ADHD medication into early adulthood is associated with substantially reduced levels of suicidal behaviour,208 depression,209 substance misuse,210 road traffic accidents,211 convictions and violent reoffending. 24 If these findings were replicated and modelled in a cost–benefit analysis, adult ADHD service provision would potentially reduce costs to health and social care, particularly given the recent research showing high levels of ADHD, both diagnosed and undiagnosed, among the prison population. 67

Capacity building

During the programme we endeavoured to develop capacity and are pleased to report the following:

• Dr Astrid Janssens was promoted to Associate Professor in Public Health at the University of Southern Denmark.

• Dr Tamsin Newlove-Delgado is now a Senior Clinical Lecturer at the University of Exeter after being awarded an NIHR Clinician Scientist Fellowship.

• Dr Helen Eke and Dr Anna Price were awarded PhDs based on the theses they completed during the CATCh-uS project.

• Ms Abigail Woodley, a psychology undergraduate student who was placed with us for 1 year, has now completed a masters course in health psychology and is working as a Psychology Assistant, with aspirations to train as a clinical psychologist.

• Ms Molly Beaulah, an advanced-level (A-level) student, assisted with the dissemination of the qualitative findings as a Nuffield Research Placement; Nuffield is using her experience, which convinced her to apply for a place at university, as an example of the impact of this scheme for next year’s advertisements.

• Two psychiatric trainees, Dr Daniel Titheridge, ST5 general adult psychiatry, and Dr Joanna Godfrey ST4 child and adolescent psychiatry, carried out an additional analysis of the qualitative data on reasons for stopping ADHD medication. This will be submitted for publication and has been taken as a poster to the International Congress and the South West Divisional meeting of the Royal College of Psychiatrists in spring 2019 (at which the work was awarded a prize for best poster). Dr Daniel Titheridge was selected to give an oral presentation at the Annual Royal College Child and Adolescent Psychiatry Faculty Conference in September 2019 (Belfast), for which he was awarded the Margaret Davenport Prize for best trainee presentation. He has also been awarded a Medical Research Council Clinical Training Fellowship.

• Parents who were involved in the Parent Advisory Group reported enjoying their experience of being involved in the research: ‘Being heard. Being respected. Feeling part of the team. Feeling I have been valued and contributed in some small way’ (parent adviser).

Oral conference presentations

For a full list including posters presented at conferences, please see Report Supplementary Material 28.

• 27 April 2016: The British Paediatric Surveillance Unit: Celebrating 30 Years of Improvement in Public Health for Children (Royal College of Paediatrics and Child Health, London). Playing With Psychiatrists – CAPSS and its Interface With BPSU.

• 28 April 2016: Cerebra Annual Conference: Improving Mental Health and Wellbeing for Young People with Autism, ADHD and Learning Disabilities (Royal Society of Medicine, London). Transition from CAMHS to Adult Services for Young People With ADHD.

• 6–7 October 2016: The Royal College of Psychiatrists – Joint Conference – Faculties of Child and Adolescent Psychiatry, and General Adult Psychiatry Annual Scientific Meeting (International Convention Centre, Birmingham). Young People With Attention Deficit Hyperactivity Disorder (ADHD) in Transition From Children’s Services to Adult Services (CATCh-uS): A Mixed Methods Study.

• 14 June 2017: Bridging Transitions: Youth Mental Health – Risk and Resilience Conference (Queen Elizabeth Teaching and Learning Centre, Glasgow). Using a Surveillance Study Methodology to Estimate the Incidence of Transition.

• 9 July 2017: European Society for Child & Adolescent Psychiatry: Transition – Child and Adolescent Psychiatry in a World of Change (Geneva). Children and Adolescents With Attention Deficit Hyperactivity Disorder (ADHD) in Transition Between Children’s Services and Adult Services.

• 14 September 2017: The Royal College of Psychiatrists Faculty of Child and Adolescent Psychiatry Annual Scientific Conference (East Midlands Conference Centre, Nottingham). National Survey Mapping Adult ADHD Services: Developing Methods for Mapping Clinical Service Provision.

• 12–13 March 2018: The International Network of Paediatric Surveillance Units Conference (Glasgow). ADHD – The Issue of Transition.

• 28–31 May 2018: 30th European Academy of Childhood Disability Conference. Developmental Medicine and Child Neurology (Georgia). Using a Surveillance Methodology to Estimate the Incidence of Transition for Young People With ADHD Requiring Ongoing Support.

• 23–27 July 2018: Symposium at the World Congress of the International Association for Child and Adolescent Psychiatry and Allied Professions (Prague). In Transition from Children’s Services to Adult Services: The Case of ADHD.

• 26 September 2019: Faculty of Child and Adolescent Psychiatry Annual Residential Meeting (Belfast). Medication Discontinuation in Young People With ADHD.

• 30 January 2020: The Royal College of Paediatrics and Child Health webinar series. CATCh-uS Before We Fall; Transition in Young People With ADHD.

Academic publications

The list of academic publications published prior to the completion of this report are in Acknowledgements, Publications. Please see Report Supplementary Material 26 for other publications published since or in submission.