Attention deficit hyperactivity disorder and the rise of the private diagnosis

Nada Khan is an Exeter-based NIHR Academic Clinical Fellow in general practice and GPST4/registrar, and an Associate Editor at the BJGP. She is on Twitter: @nadafkhan

It’s a topic that is emotive for patients, parents and carers.  The diagnosis of attention deficit hyperactivity disorder (ADHD) can be a difficult area to navigate, with significant delays in the referral and diagnostic process frustrating patients and clinicians alike.   A recent BBC Panorama ‘expose’ of private ADHD clinics suggests that some online providers are over-diagnosing ADHD following inadequate clinical assessments.  Patients are increasingly turning to private providers both out of pocket and through right-to–choose arrangements, and ultimately, GPs may be asked to take on prescribing of medications initiated by private clinics.  What are the implications for patients and GPs with the increasing use of private clinics in ADHD diagnosis?

Diagnosing ADHD

ADHD is common, with a prevalence of 3-4% amongst UK adults.¹  As a lifespan disorder, many people will start exhibiting symptoms or get a diagnosis in childhood, but why do adults want a confirmation of a diagnosis?  Some people want an explanation, an answer for why they are as they are, or to access treatment.  Adults receiving a diagnosis of ADHD describe a sense of relief as their ‘lifelong quest for an explanation of their difficulties’ is answered, alongside feelings of anger or sadness at not being diagnosed sooner.²

Given that some adults may feel that they have struggled for years without understanding themselves, getting a timely answer to whether they have ADHD is an important step to coming to terms with their past and thinking about their future.  Currently, in the UK, GPs refer on to secondary care for assessment, diagnosis and access to care including initiation of medication.  But, the wait time for ADHD clinics is long.  I’ve just moved from Leeds, where the ADHD assessment team is currently booking in patients who were referred to the service in December 2020.  Delays in diagnosis can be especially frustrating for adults who may already feel a sense of loss for years spent undiagnosed.³  Has ADHD dropped off the healthcare agenda?  Current arrangements for assessment pathways have meant that mental health services are ‘swamped’ by referrals for ADHD, and specialists have called for national NHS data on ADHD referrals and waiting lists to better understand the scope of the problem.⁴  It’s not, then, surprising that more adults are choosing to go to private clinics to reduce their waiting time, anxiety, and feel a sense of moving forward with their lives.

ADHD assessment

The concern raised by the BBC Panorama report is that some private providers might be overdiagnosing ADHD, with little attention paid to a person’s past mental health history or the comprehensive assessment needed for a diagnosis.  A Royal College of Psychiatry guideline on assessing adults with ADHD suggests that a ‘good quality assessment takes time and is ideally multidisciplinary….longitudinal assessment is also advised’, and should include a mental state examination, a developmental history, collateral information from other sources and consideration of features of other neurodevelopmental disorders.⁵  NICE guidelines reaffirm this approach, suggesting that a diagnosis of ADHD should only be made by a healthcare professional with training and expertise in diagnosing ADHD based on a full clinical, psychosocial, developmental, psychiatric history alongside corroborative reports and assessments.¹  Despite this guidance, the BBC Panorama report suggests that several key aspects of this holistic assessment, such as the psychiatric and corroborative history, might be missed out by some providers.

Just like our secondary care colleagues, private providers may then suggest initiation of a drug treatment for ADHD, and then, depending on the local shared care agreements, a request may be made to the patient’s GP to continue prescriptions.  GPs need to feel confident about taking on the clinical and legal responsibility for prescribing any medications under a shared care arrangement.  At the core of any shared care agreement is the patient’s best interests, agreement and preferences.   But how do GPs feel about taking on prescribing for ADHD medications if there are concerns about the integrity of an assessment?  A small study of GPs in Northern Ireland indicated that doubts about the robustness of the diagnosis was one of the main reasons why GPs declined shared care prescribing arrangements for ADHD.⁶  Not all private providers are the same, some providers may be providing good quality assessments, indeed, by psychiatrists or clinical psychologists working privately alongside their role in the NHS.  The GMC shared care guidance states that ‘if you prescribe based on the recommendation of another doctor, nurse or other healthcare professional, you must be satisfied that the prescription is needed, appropriate for the patient and within the limits of your competence.’⁷  The challenge for GPs will be deciding, based on the evidence provided by each provider, that they are satisfied that the prescription is needed and that the assessment complies with National Institute of Clinical Excellence (NICE) guidelines.

Where does this leave GPs and patients? 

So, where does this leave GPs, and more importantly, people wondering if they have ADHD?

A group of primary, secondary and tertiary care professionals recently got together to discuss the state of ADHD services in the UK.  This group recommended the development of ADHD specialism within primary care, suggesting that treatment could be initiated by appropriately qualified clinicians in primary care.⁸  The authors suggest that the relegation of adult ADHD diagnosis to specialist services is ‘at odds with its high prevalence and chronic course’.  Is managing ADHD risky, or too complex for GPs?  In the BJGP, Cubbins et al suggest that no, it’s not, and that GPs with extended roles should take up a greater role in ADHD care.⁹  I can imagine the pushback on this in an overstretched workforce, but perhaps this could be a role that members of the multidisciplinary team, such as mental health practitioners, could take on under supervision from specialist mental health teams.  But these are roles, and specialisms that will take time to develop, and in the meantime, perhaps GPs and patients need to know which private providers are providing appropriate assessments and management plans.

Finally, I haven’t touched upon the perspective of those who feel that ADHD is at risk of being overdiagnosed or inappropriately medicalised.  I’d suggest reading the piece published here in BJGP Life which explores avoiding harm in difficult and ‘delicate’ diagnoses.  Navigating the complexity of diagnosing ADHD is an issue that will challenge GPs and patients alike, but if there’s one thing everyone agrees on, it’s that the current system and wait times isn’t working for anyone.

References

1. Attention deficit hyperactivity disorder: diagnosis and management: National Institute for Health and Care Excellence; 2018 [Available from: https://www.nice.org.uk/guidance/ng87/chapter/recommendations#diagnosis.
2. Young S, Bramham J, Gray K, Rose E. The experience of receiving a diagnosis and treatment of ADHD in adulthood: a qualitative study of clinically referred patients using interpretative phenomenological analysis. J Atten Disord. 2008;11(4):493-503.
3. French B, Perez Vallejos E, Sayal K, Daley D. Awareness of ADHD in primary care: stakeholder perspectives. BMC Fam Pract. 2020;21(1):45.
4. Muller-Sedgwick US-M, J. Why are Adult ADHD waiting lists not mentioned in the NAO 2023 report? BMJ. 2023;380:324.
5. Attention deficit hyperactivity disorder (ADHD) in adults: Good practice guidelines. Royal College of Psychiatrists in Scotland; 2023.
6. Carrington IM, McAloon J. Why shared-care arrangements for prescribing in attention deficit hyperactivity disorder may not be accepted. Eur J Hosp Pharm. 2018;25(4):222-4.
7. Shared care: General Medical Council; 2021 [Available from: https://www.gmc-uk.org/ethical-guidance/ethical-guidance-for-doctors/good-practice-in-prescribing-and-managing-medicines-and-devices/shared-care.
8. Asherson P, Leaver L, Adamou M, Arif M, Askey G, Butler M, et al. Mainstreaming adult ADHD into primary care in the UK: guidance, practice, and best practice recommendations. BMC Psychiatry. 2022;22(1):640.
9. Cubbin S, Leaver L, Parry A. Attention deficit hyperactivity disorder in adults: common in primary care, misdiagnosed, and impairing, but highly responsive to treatment. Br J Gen Pract. 2020;70(698):465-6.

Featured photo by Maria Ionova on Unsplash.