01/03/2024

BBC Panorama has exposed private health clinics assigning ADHD diagnoses in the UK without due process. However, the answer to this problem is not to doubt the veracity of those who come forward for support. People who ask, wait, pay, are in trouble. To suggest that they’re making it up plays on all the stigma and stereotypes that have plagued people with hidden disabilities for decades; we must guard against overinterpretation of the anecdotal examples in the programme.

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There’s a big difference between a journalist playing a part and the thousands of people who seek help. Those who have had online assessments after showing up for testing and who have found the medications helpful shouldn’t doubt themselves or their experiences. Those who are still struggling should continue to ask for interventions and further evaluations.

Neurodiversity researcher Dr. Monique Botha commented: People are looking for what they need. That’s why so many who make an appointment end up with a diagnosis. This is only a scandal if people think that people are unable to know themselves reliably.

Diagnosis is increasing but ADHD is not overdiagnosed

Diagnoses of ADHD have skyrocketed in the UK in recent years and prescriptions for ADHD medication have almost doubled since 2016. However, the number of prescriptions is still far below the 3-7% of the population who he estimates he has ADHD. Women are the fastest growing group because we were systematically excluded from gender criteria until about 10 years ago. What we don’t need now is a widespread fever that makes women doubt themselves and distrust their doctors.

The NHS has a capacity problem, this is evident in most areas of healthcare, but with public knowledge of ADHD, autism and neurodivergence more generally, the numbers coming forward for diagnosis and treatment is exceeding the capacity of fully qualified assessors. All evidence still points to systemic underdiagnosis and diagnosis is favored against those with the persistence and advocacy to acquire healthcare through the NHS or the resources to go private. Shortcuts are plentiful, from the private clinics showcased in the program to the use of online assessments, the market is ripe for finding cost-effective ways to acquire this label.

Are shortcuts safe?

No. The short-cut diagnosis is by no means safe and, as Panorama rightly points out, this is a national scandal for the UK.

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To solve this situation, we need to train more diagnosticians, not find shortcuts. Registered nurses, psychologists and general practitioners could all play a greater role, while providing the critical analysis and differentiation needed to signal those with more complex needs. The NHS fails to meet its diagnostic obligations for ADHD and autism, won’t even look into dyslexia and dyspraxia and people are struggling with risky self-medication, depression and anxiety as a result.

Diagnosis changes lives and shapes identity. It is a deeply vulnerable time, we cannot let people feel unsupported and exposed. We need to invest more in research to understand the underlying mechanisms and elucidate supportive intervention pathways before even considering shortcuts.

How should we diagnose?

The difficulty with ADHD symptoms, such as poor concentration, impaired working memory, trouble sleeping, emotional dysregulation, and excessive drive to move, is that ADHD isn’t the only reason these can crop up. PTSD, thyroid dysfunction, Long Covid, and other complex syndromes such as mast cell activation can coexist or even be the sole cause of the same behavior patterns. These symptoms must cause exclusion for a diagnosis to be made and, if not, should still justify a professional response. People don’t pay money to see a psychiatrist if they are perfectly fine. If it’s not ADHD, what is it and how can we help?

The diagnosis of ADHD is based on a detailed background assessment, identifying whether the individual has had symptoms throughout the lifespan, as would be expected in a neurodevelopmental condition versus an acquired change through disease, injury, or a trauma. The detailed background assessment and interview cannot be cut short, it requires time and thorough listening/observation from a trained professional, while weighing up alternative possibilities.

NICE guidelines confirm this approach and state that those making the diagnosis should be appropriately trained and regulated health professionals, including doctors, nurses and psychologists. This rigor was clearly lacking in the examples presented by Panorama and must be considered. However, let’s also apply some nuances, all health conditions can be misdiagnosed by shortcuts and often are, in the context of underfunded public health infrastructure.

Should we exclude online assessments?

No. Professor James Brown, from Psychiatry-UK, cited two recent peer-reviewed research papers, which methodically explored online ADHD assessments, rather than a couple of anecdotal examples.

ADHD assessments can be implemented remotely, most often maintaining high standards.

As a profession and society, we should recognize the significant potential of these platforms to deliver high-quality, evidence-based care when designed and implemented well.

The point is, a skilled professional, who takes care and time during the process, can be effective online or in person. It’s time and rigor that count, not the forum. Additionally, evidence suggests that many neurodivergent people find it easier to build relationships online and prefer this method of interacting.

Jon Chanter, CEO of Psychiatry-UK reports: Of the medical specialisations, psychiatry is the only ideal to be done online: there is rarely a need for a physical exam and the discretion and convenience of seeing the doctor from home is very appreciated by our customers.

Her colleague Dr. Richard Mellor concurs: What surprised me when I started working online was how often it seems easier to develop a therapeutic relationship when the patient feels more in control of the situation.

Conversely, questionnaire-based online screening has been used for many years for triage and may still have a place in an evaluation pathway, but it should never be used in place of diagnosis. Online questionnaires should meet basic psychometric standards and should be very clear to direct people to further immediate support if needed.

The true extent of the scandal

Withdrawing access to diagnosis altogether sets a dangerous precedent and requires careful consideration for us as a society, as far as preventive rather than crisis-driven healthcare is concerned. This is happening across the country, leaving people with no choice but to see private alternatives or self-medicate.

Neurodivergence, when left untreated/unsupported, leads to higher levels of incarceration, lower levels of employment, and worse health outcomes. While we may need to improve our standards of diagnosis, ignoring people until they’re in dire straits is a political decision, not a medical or psychological one.

When neurodivergent people have the adaptations and flexibility they need, they often find success in school and work. If we want our fellow citizens to have equal opportunities and realize their potential, we need to work harder to protect services, prioritize early assessment and signal effective support.

The diagnosis of ADHD leads to a simple and inexpensive treatment that can make a difference for hundreds of thousands of people, otherwise more exposed to social and health risks. It is not safe or efficient to exclude people from treatment. The scandal is not a false diagnosis, it is underfunded, last minute services that do not meet strategic planning and preparation for the needs of a population. Dr. Shevonne Matheiken added this comment:

“A better use of media resources, in my personal opinion, would be to draw attention to the dire state of the current NHS waiting lists for adult ADHD assessments and to highlight the role of systemic inequalities in access differentiated to specialists, underdiagnosis and misdiagnosis (particularly in women and adults of ethnic minorities). This would complement the voices of neurodivergent adults, rather than risk antagonizing the ongoing efforts of lived experience advocates and ND-led organizations to change many outdated and harmful narratives that sadly exist.”

Shortcuts are no good. But not even the disbelievers who are in trouble.

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