Primary care provision for young people with ADHD: a multi-perspective qualitative study

Background Attention deficit hyperactivity disorder (ADHD) is a highly prevalent neurodevelopmental disorder. UK guidance states that primary care has a vital role in effective ADHD management, including referral, medication prescribing and monitoring, and providing broader mental health and wellbeing support. However, many GPs feel unsupported to provide health care for young people with ADHD. Inadequate health care is associated with rising costs for patients and society. Aim To investigate the experiences of young people with ADHD accessing primary care in England, from the perspectives of people with lived experience of ADHD and healthcare professionals (HCPs). Design and setting A qualitative study. Interviews were conducted with HCPs (GPs, practice managers, and a wellbeing worker) and people with lived experience of ADHD (young people aged 16–25 years and their supporters) located in integrated care systems across England. Method Semi-structured interviews were conducted with participants at five purposively selected general practices (varying by deprivation, ethnicity, and setting). Questions focused on experiences of accessing/providing health care for ADHD. Reflexive thematic analysis was undertaken within a critical realist framework to understand how provision works in practice and to explore potential improvements. Results In total, 20 interviews were completed with 11 HCPs and nine people with lived experience. Three themes were generated: a system under stress, incompatibility between ADHD and the healthcare system, and strategies for change in ADHD primary care provision. Conclusion Standardisation of ADHD management in primary care, providing better information and support for HCPs, and advising on reasonable adjustments for people with lived experience could help improve access to effective treatments for young people living with ADHD.


Background
Attention deficit hyperactivity disorder (ADHD) is a highly prevalent neurodevelopmental disorder.UK guidance states that primary care has a vital role in effective ADHD management, including referral, medication prescribing and monitoring, and providing broader mental health and wellbeing support.However, many GPs feel unsupported to provide health care for young people with ADHD.Inadequate health care is associated with rising costs for patients and society.

Aim
To investigate the experiences of young people with ADHD accessing primary care in England, from the perspectives of people with lived experience of ADHD and healthcare professionals (HCPs).

Design and setting
A qualitative study.Interviews were conducted with HCPs (GPs, practice managers, and a wellbeing worker) and people with lived experience of ADHD (young people aged 16-25 years and their supporters) located in integrated care systems across England.

Method
Semi-structured interviews were conducted with participants at five purposively selected general practices (varying by deprivation, ethnicity, and setting).Questions focused on experiences of accessing/providing health care for ADHD.Reflexive thematic analysis was undertaken within a critical realist framework to understand how provision works in practice and to explore potential improvements.

Results
In total, 20 interviews were completed with 11 HCPs and nine people with lived experience.Three themes were generated: a system under stress, incompatibility between ADHD and the healthcare system, and strategies for change in ADHD primary care provision.

Background
2][3][4] Nearly half of individuals diagnosed with ADHD during childhood continue to experience symptoms into adulthood. 5][8] Treatment options include medication and non-pharmacological support, such as psychosocial interventions.Both offer short-term efficacy in ameliorating ADHD symptoms, 9,10 while medication has been shown to improve long-term outcomes. 6roviding patients with adequate access to support, including medication where needed, enables effective management of ADHD. 11,12s and primary care are the interface between patients and specialist services in the UK.Under National Institute for Health and Care Excellence (NICE) ADHD guidelines, 11 primary care professionals can refer patients for assessment/ diagnosis and prescribe medication under shared care agreements.However, research indicates patchy provision, with long waiting times and limited availability of adult ADHD services. 13,14Often, the components needed to enable shared care prescribing of ADHD medication are not in place. 15Additionally, research indicates that shared care does not work consistently in practice, with concerns over the balance of risk and responsibility. 15,16evious qualitative research has examined stakeholder experiences of ADHD management in primary care from the perspectives of parents and older adults. 17However, young people face additional challenges as they transition into adulthood. 18Appropriate support in this period is critical to maintain engagement with treatment and for future mental health.Therefore, this study aimed to explore the experiences of young people (aged 16-25 years) with ADHD when accessing primary health care, incorporating perspectives of young people with lived experience of ADHD and their supporters, and primary healthcare professionals (HCPs).The objectives were to understand how young people

Participants and recruitment
Previously, the Managing young people (aged 16-25) with ADHD in Primary care study 19 investigated the provision of supportive elements for ADHD in primary care, reported by people with lived experience and HCPs.Potential primary care practice sites were identified via MAP survey responders and purposively sampled from across England to represent a range of local area characteristics (ethnicity, setting, and deprivation).
Participants were recruited via practice sites or participation in the national survey where they indicated a location close to one of the sites.All participants had to be currently residing or working in England.Further detail of our recruitment strategy can be found in the MAP study protocol. 19

Data collection
Data were collected using semi-structured interviews with topic guides (see Supplementary Information S1 for details).Topic guides were initially developed using questions from the MAP survey, and refined following consultation with two research advisory groups, whose members were recruited to support the wider MAP study. 19A young person research advisory group included young people with ADHD and their supporters, and a practice and policy research advisory group consisted of practitioners and service commissioners.Questions focused on experiences of accessing/providing health care for ADHD.Box 1 gives summaries of the topic guides.

How this fits in
Attention deficit hyperactivity disorder (ADHD) is a highly prevalent neurodevelopmental disorder, with negative consequences for individuals and their communities.Research indicates a current failure of health care for people with ADHD in England, but previous recommendations to improve support for ADHD in primary care lack feasible and practical recommendations for healthcare professionals.This study highlights individual-, practice-, and system-level barriers to accessing support for ADHD via primary care, and provides suggestions for how to overcome these barriers from the perspectives of multiple stakeholders.Healthcare professionals and people with lived experience of ADHD provided data, which points to the standardisation of ADHD provision, providing additional information and support for clinicians, and better use of reasonable adjustments for patients with ADHD in general practice.
British Journal of General Practice, June 2024 Interviews took place between March and June 2023 either online via Microsoft Teams or via telephone, with informed consent.All interviews were audio-recorded and transcribed verbatim by an approved third party.All identifiable participant information was anonymised.Recordings and transcripts were stored on a general data protection regulation-compliant server only accessible by members of the research team.

Data analysis
A reflexive thematic analysis was conducted to generate themes, as described by Braun and Clarke, 20 and exemplified by Byrne. 21This was undertaken within a critical realist framework, 22 using NVivo (version 14) to manage the data.A preliminary inductive framework was created by immersion in the interviews and line-by-line coding of two transcripts by two researchers.This was then revised, incorporating deductive codes from the topic guides.Remaining transcripts were coded by three researchers, supported by regular meetings to discuss and refine the framework with the wider team.Coders maintained reflective journals throughout, documenting their personal perspectives.Column summaries were created for the framework matrix, then organised into themes and subthemes, which were applied to the data and refined by four researchers.

Sample
In total, 20 participants (11 HCPs and nine people with lived experience) were recruited from five primary care practices in England, located across five of the seven NHS regions.Practice location characteristics are outlined in Table 1 and individual participant details are given in Table 2.

Findings
Three themes were generated relating to primary care provision for young people with ADHD: a system under stress, incompatibility between ADHD and the healthcare system, and strategies for change.These are summarised in Box 2.
A system under stress Lack of provision.Many participants described difficulties accessing prescriptions for ADHD medication from their GP, especially if they had been diagnosed privately.This is of concern Incompatibility between ADHD and the healthcare system: • Barriers to accessing carea complex system • Consequences for the individual The systems/processes involved in accessing care are counterintuitive to characteristics of ADHD, such as difficulties with organisational skills and attention.These barriers have consequences for individuals.

'But I think just things like inflexible appointment keeping and being thrown off waiting lists because you are not keeping your appointments or making it very difficult for you to enter systems because you have got to fill in very big questionnaires and submit them on time, that kind of thing, that can be hard for people.' (GP-1)
Strategies for change in ADHD primary care provision:  This was acknowledged by most HCPs, although there were some exceptions, with a university practice reporting strong mental health and welfare provision: 'Within the university setting there's often a very strong welfare provision as well as a counselling service if needed, so students here are often very well supported from that point of view.' (GP-4) Some practices offered access to mental health support but with 'nothing specific to ADHD' (GP-1), experiences echoed by both HCP and participants with lived experience.Many HCPs mentioned access to social prescribers who offer 'generic support for people' (GP-1).One GP provided examples of social prescriber assistance: 'Support with learning, support with any issues they might have with housing issues, help with benefits … food banks, that kind of stuff.But that's not specific to ADHD.' (GP-3) Some participants with lived experience felt that, while comorbidities or symptoms caused by their ADHD (such as low mood) might be recognised and treated, the underlying cause (ADHD) was not: 'Throughout the course of all of [my] treatments, I had always said it felt like we were treating a symptom, not the cause

… It just feels like the foundation of what the problem is somehow is not being addressed.' (YoungPerson-6)
Deferring responsibility of care.Most participants with lived experience expressed feeling 'pushed from pillar to post' (Supporter-1) between different NHS services when accessing care.Many described trying Right to Choose (for example, via Psychiatry UK, a private psychiatry service that holds contracts with the NHS) for accessing referrals to mitigate long NHS waitlists, but HCPs pointed out that increased demand via these routes was deferring/moving waitlists: 'I'll be looking to refer them to Psychiatry UK but that could well be a 9-month process; despite the best of intentions, their waiting lists are growing hugely, I believe.' (GP-2) A concern expressed by some HCPs was that to mitigate for long waitlists they were being asked to 'mop up' (PracticeManager-3) after secondary care without recognition of additional responsibilities they were taking on: 'It becomes something else that once upon a time was managed by secondary care, and it suddenly becomes a primary care thing.That's great in many ways, but it's not great in primary care because we're picking up something else from secondary … Maybe there needs to be recognition of that.' (PracticeManager-1)

Variation in ADHD management. HCPs discussed variation within and between practices in terms of shared care, prescribing practice, private versus NHS diagnoses, and knowledge or willingness of individual practitioners to prescribe:
'There is no universal way that people put shared care drugs on a prescribing system.' (GP-1) 'It is different, yes.So, with someone with an NHS diagnosis, there's a fairly standard procedure; they titrate them, they get them stable, and then take over the actual prescribing … for people with a private diagnosis, that's entirely different.'(GP-3) One reported consequence was overwhelming demand at practices with 'neurodiverse friendly' (Supporter-2) systems, including multiple ways to book appointments or ability to email GPs: 'We do attract patients from other practices who are unable to get support and care, and there are some practices who will not accept shared care agreements from private providers.'(PracticeManager-4) People with lived experience discussed negative impacts related to variations in care, including 'no continuity' (Supporter-3) within practices: 'But when you don't see anyone who's a regular in the practice … it's sort of like "Okay, I'll pass it on, pass it on", and it sort of goes under the radar then.' (Supporter-1)

Incompatibility between ADHD and the healthcare system
Barriers to accessing care -a complex system.The most described barrier to accessing primary care was the complexity of the systems/processes involved.Many participants with lived experience found appointment booking to be a 'frustrating' (Supporter-3) process: Both participants with lived experience and HCP found navigating the 'whole rigmarole' (GP-3) of referral processes, medication titration, and supporting transitions between child and adult services to be a highly complex process.

Services were described as 'work[ing] as two separate entities rather than together' (Supporter-2): 'There's a lengthy process from the patient attending their first appointment with the GP, like the process with regards to the referrals and communication, etc., with secondary care … I think sometimes it's not clear who's actually responsible for what.' (PracticeManager-3)
ADHD medication being a controlled substance created another reported barrier for patients, with the need for frequent repeat prescriptions.Shared care protocols were described as a 'minefield' (PracticeManager-3).Participants reported that this made changes to medication type and dose difficult: 'That has been a bit of an arduous process, in all honesty.Getting stuff moved onto

Research
repeat … having to continually follow up on that process.' (YoungPerson-6) HCPs and people with lived experience identified that the healthcare systems people with ADHD must navigate were often incompatible with difficulties associated with ADHD, creating barriers for patients accessing care: 'It is more of a challenge for [people with ADHD] to keep to structures and appointments by systems that may not necessarily have much sympathy with their particular difficulties.'(GP-1)

'One of the main barriers … is the fact that the ADHD referral process … is not very ADHD-friendly, which seems sort of counterintuitive.' (YoungPerson-6)
Consequences for the individual.Several HCPs and participants with lived experience spoke about the mental health cost of living with ADHD and trying to access care, including reports of self-harm and suicidality:

'Just general self-neglect as a consequence of depression associated with ADHD … can lead to suicidal ideation and potential suicide risk or pseudo-suicide risk, and all of which can cause harm.' (GP-2)
Some participants with lived experience referred to an unofficial threshold for care, with exceptional levels of distress apparently needed to access secondary care, making positive management of their condition difficult: 'Why should it have to get to that point before you see someone?You need to get there before to prevent that.' (YoungPerson-4)

Strategies for change in ADHD primary care provision
Clarifying responsibility for care.HCPs and participants with lived experience agreed that clarification or standardisation of responsibilities for provision would be helpful.Some felt that ADHD should be treated similarly to other chronic health conditions, with regular checks and clear guidelines/pathways, or an 'ADHD nurse at the practice' (Supporter-2): 'You have clear guidance and protocols for managing COPD [chronic obstructive pulmonary disease] and asthma, and all these other conditions, so maybe there needs to be one for something like that if it's going to be managed in primary care, so we're very clear what we have to do annually, 6-monthly, but it's funded.'(PracticeManager-1) However, there was disagreement about which services should manage ADHD: 'So maybe if [ADHD] became something managed in primary care, and people pop in and have their asthma review and their smear and diabetic review, they could pop in and have their ADHD review.That might normalise it a bit more, take off some of the stigma.' (PracticeManager-1) 'I really think that, asking us to prescribe medication for a condition technically they're managing shouldn't be at the request of the GP.I wonder why it's not all just undertaken with secondary care.' (PracticeManager-3) ADHD was not viewed as a disability or mental health condition by some HCPs; however, it did not fall into the category of physical health.This uncertain status as a condition resulted in some participants with lived experience feeling that ADHD was not seen as 'important' or 'urgent' (Supporter-2), and was a low priority for primary care: 'We wouldn't necessarily routinely make reasonable adjustments around someone with ADHD like we would for someone with a learning disability or a severe mental illness or autism.' (GP-3) Need for training/information.Many participants expressed a need for improved training and information, such as on care plans/pathways and medication, to help them feel more confident in caring for patients with ADHD: 'Neurodiversity and ADHD, it just needs to be covered as a base just for, like, every GP.' (YoungPerson-4) Furthermore, both groups mentioned the importance of raising awareness of all ADHD traits, with some participants with lived experience mentioning HCPs missing inattentive symptoms, especially in female patients: 'But I do think one of the major barriers for me in terms of accessing support, was awareness of female/inattentive presentations of ADHD.That was a major … and it wasn't until like, the 19th appointment or whatever it was.' (YoungPerson-5) Key roles specifically mentioned by both stakeholders were those of reception staff.Participants reflected that a better understanding and tolerance of people with ADHD would be beneficial: 'I certainly think that general practice could do with a little bit more training to understand, so that they have the ability to train reception staff generally on how to meet the needs of people with ADHD.' (GP-2) Improving provision.Participants discussed a range of ways that support for ADHD in primary care could be improved.Flexibility was highlighted by many HCPs, including varied ways to book appointments/contact patients: 'Flexibility all the way, always to be flexible with the patients.Our senior GP, he is really aware of these patients and is very flexible with them.But he has boundaries with them as well, we've still got to have the boundaries.' (PracticeManager-2) Meanwhile, many participants with lived experience expressed a need for simpler processes, for example, when booking appointments or ordering medication: 'And no more complicated than it has to be.If it can be one document you send in, or like I have my repeat prescriptions, where I don't even have to type in the medication, I just click "Add".Just anything to make it easier is wonderful.'(YoungPerson-2) Other accommodations mentioned included longer appointments, appointment reminders, performing multiple health-related tasks in one appointment to reduce the need for attendance, and staff continuity: 'Don't let them leave without having a blood test … they might have come in about a form for university, but before they leave we must try and do a medication review, get all of those things done, because we know this might be the only opportunity to see them for a few months.'(PracticeManager-4) 'Even if it's a couple of GPs that deal with kids with ADHD, well, even adults, so it's not a different doctor every time.' (Supporter-2)

Summary
Our findings evidence the broad range of challenges people living with ADHD and HCPs experience with regards to ADHD management in primary care, including variability in practice and limited resources.These result in individual and systemic stress. 13articipants suggested that optimal treatment of ADHD in primary care requires reasonable adjustments for patients and established processes, like those used for other chronic health conditions.The data presented here provide important insights to inform practical and feasible improvements to better integrate healthcare provision and reduce health inequalities for this underserved group. 26Figure 1 summarises key recommendations for practice.

Strengths and limitations
This novel study provides a unique perspective on primary care for young people with ADHD from five diverse sites across England, providing insights into current practice from a range of stakeholders.The sites were chosen to include a range of practice types and populations.For example, the university practice had notable differences in reality compared with practices from areas with high levels of deprivation.The diversity of professional/experiential perspectives captured was also a strength.This research bridges a gap in the literature, providing data on the experiences of people aged 16-25 years, an otherwise under-represented group.An additional strength of this research is that the analysis was conducted with researchers from different professional and experiential backgrounds (psychiatry, general practice, allied health professionals, applied health research, and lived experience), enhancing the credibility and trustworthiness of our findings. 27e study has some limitations.Recruiting participants who had previously expressed interest in ADHD research may have resulted in a biased sample, with HCPs with an increased awareness of ADHD and patients with lived experience with polarised experiences of primary care being more likely to take part.Participants varied in sex; however, we did not achieve an ethnically diverse sample of participants with lived experience, thus additional measures to reach underserved groups could be used in the future, such as reaching out to minority participants via community organisations.However, their experiences and reflections remain valid and of interest.Furthermore, our study would have benefited from a broader selection of HCPs (for example, to include social prescribers).This area would benefit from further investigation, especially as roles funded through the Additional Roles Reimbursement Scheme are becoming more widespread in primary care. 282][33] This study demonstrates through stakeholder interviews at five diverse practices across England that the situation is complex, with barriers for both primary care providers and patients.The research has identified challenges including lack of provision; uncertainties in responsibility for care; and variations in provision and care pathways, medication under shared care, and gatekeeper support.5][36] If GPs are not supported in their role as gatekeepers to secondary care and providing ADHD treatment under shared care, as laid out in NICE guidelines, 11 then the most vulnerable patients are unlikely to access treatment, increasing health inequalities.
The complexity of systems and processes involved make ADHD management in primary care frustrating and difficult for both patients and clinicians.Our findings resonate with evidence indicating that shared care and communication between primary and secondary services, 15 concerns for GPs around prescribing a controlled substance, 33 and complex care pathways 17 are barriers to care.These barriers would be challenging for any population but are magnified for patients with executive function difficulties, who, for example, often depend on supporters to help them book and attend appointments. 37revious research has outlined the impact that attempting to navigate barriers to health care has on the wellbeing of young people with ADHD. 38These individual consequences occur in addition to high costs for society of failing to treat ADHD, 1,39 and the additional strain on GPs who already feel burdened by having to find workarounds when appropriate specialist supervision is not in place. 33r findings highlight three areas of focus for improving ADHD provision, all building on evidence from previous qualitative and quantitative research: clarifying responsibility for care, 12,40 better information and training, 17,[41][42][43] and adaptations for people with ADHD in line with the Equality Act 2010. 44HCPs and participants with lived experience highlighted that ADHD is often treated differently from other common longterm illnesses, with fewer patient reviews and varying knowledge among practice staff.Thus, there is a need for clear and established protocols in line with those for other conditions, linking with growing recommendations from previous research for mainstreaming of ADHD care 12 and better organisation of services. 40espite calls for better training for GPs, 16,17 this must be considered within the context of the pressures on primary care.Our findings reflect a need for better-quality information in the primary care environment, including about local care pathways and awareness of how symptoms present in under-represented groups.This links with the recognised importance of information in treatment of ADHD, which was added to the NICE guidelines in 2018. 45One potentially efficient route towards meeting these needs would be to work with HCPs and people with lived experience to

Table 1 . Overview of research sites, participants, local area profiles, and site descriptions Practice research site (number of participants) Profile of local authority Profile of practice, including characteristics of local area as described by participants % 'White' a Rural/urban classification b IMD rank c Summary Quotes
25e provide a drug misuse service … SAS service … for patients who have been removed from their practice having behaved in a way that warranted the police being called.' (GP-2) 'We have an onsite counsellor who's available for brief interventions.' (GP-2) 'We have link workers, and … primary mental health workers.' (GP-3) 'We have a young population … we also have a lot of overseas families and students.'(PracticeManager-4)'Wehavea…[wellbeing]worker who comes to the practice who doesn't provide therapy as such but is very good for exploring complex issues and kind of way finding and thinking about other resources that may be needed or accessible to a particular patient.' (GP-4) 'High deprivation area … one of the most deprived communities in … in England, so lowest 10%.' (GP-5) 'We have a mental health worker … social prescribers.'(PracticeManager-5)a2021Census,percentage of people classing themselves as 'White', with the average in England being 81.0%.23 b2011 Census.24cIndices of Multiple Deprivation (IMD) summaries for local authority districts;25rank of proportion of lower layer super output areas in most deprived 10% nationally, with 1 being the highest rank for deprivation and 195 being the lowest.MH = mental health.PCN = primary care network.SAS = Special Allocation Scheme.RESEARCH | e411 Research given that several participants with lived experience reported that they 'ended up with a private diagnosis because of the [NHS] wait times' (YoungPerson-2): 'So, my GP has refused to take over my prescriptions, so I still get them from Psychiatry UK.They didn't give me a reason, they just said that they won't do shared care.' (YoungPerson-1) Additionally, participants with lived experience overwhelmingly reported receiving no medication monitoring from their GP, with one exception whereby the Box 2.

Summary of themes, with illustrative quotes Theme and sub-themes Summary Illustrative quotes
'The health service in general practice particularly is not paid to support everything.We have limited resources; we have to manage within those limited resources.'(GP-5) 'The particular one is the complete absence, or the paucity of actual services for people with ADHD.So, it's great when I can see somebody with angina.I know I've got a system where I can assess that patient, I can arrange investigations.I can pull together an initial primary care treatment programme and I can refer on … and I know that system's going to work.I don't have that for ADHD.The systems are very poor.' (GP-2)

Table 2 . Participants: unique identifier, role, and additional characteristics
19Participant recruited via Managing young people (aged16-25)with ADHD in Primary care study19(instead of via site) from location within same local area as practice research site.ADHD = attention deficit hyperactivity disorder.British Journal of General Practice, June 2024