A BBC Panorama documentary is the latest swell in an ocean of content which suggests that ADHD is being ‘over diagnosed’. Here, journalist Diyora Shadijanova, who lives with the condition, shares her take on the real issue such talk is obscuring.
In case you've missed it, a new moral panic has dropped. There is a growing fear – one I believe is unfounded – that people are being ‘over diagnosed’ with Attention Deficit and Hyperactivity Disorder (ADHD).
A spat of recent headlines are the most flagrant evidence of this. ‘Why so many celebrities want an ADHD diagnosis’ is the title of one piece, the pernicious subheading stating: ‘By identifying as ill, adults gain a licence to act like naughty children.’ ‘Why I'm sceptical of the ADHD epidemic,’ reads another.
No longer mainly witnessed on the internet, this strain of thought is bleeding out into my IRL existence. Last month, I met a man at a barbecue who informed me of his conspiratorial view that ADHD is a Big Pharma ploy to get people hooked on drugs. Speaking to ADHD-diagnosed friends reveals a list of similar experiences. For people like me who are living with the neurodevelopmental condition, the rise of this rhetoric is alarming.
What is going on with the BBC Panorama investigation?
As a talking point, this also seems to be reaching something of a fever pitch. A recent BBC Panorama documentary (titled Private ADHD Clinics Exposed) examined how some private ADHD clinics might be failing vulnerable patients by charging them large sums of money for mediocre assessment services and poor aftercare, post-diagnosis.
The thing is, there is a wider context of why private ADHD services are exploding in popularity, right now. This includes an increase in awareness about the condition, an underfunded NHS with a growing pool of desperate patients and a rapidly changing world compounding mental health issues.
Without laying this out, I believe the investigative team's narrow focus on potentially dodgy clinics played into the delegitimising idea that we’re experiencing an over diagnosis epidemic.
As I see it, what is actually happening in the world of ADHD diagnoses is this. Less stigma and more awareness about how the condition shows up in traditionally under diagnosed groups such as women and people of colour means that there are communities of people now getting to grips with the idea that symptoms they’ve spent their lives trying to manage could be signals of ADHD.
Data bears this narrative out. In the UK, it is estimated that 2.6 million people have ADHD. A few years ago, however, only 120,000 people had been diagnosed. It looks like, then, the big jump in assessments is not an issue of over diagnosis but rather a natural catch-up.
Many experts agree with this view. ‘ADHD is not becoming more prevalent and the fact that we are playing catch-up does not equate to an exponential increase. A tiny fraction of people in the UK take stimulant medication, the gold standard treatment – far fewer than the 2-4% of the adult population whom we know are likely to have the condition,’ writes Dr Mike Smith, specialist consultant psychiatrist in ADHD from Leeds and York Partnership NHS Foundation Trust and member of the Royal College of Psychiatrists’ Neurodevelopmental Psychiatry Special Interest Group, in the Guardian.
Dr Smith, to note, is featured in the Panorama documentary.
The potential issues in some private clinics
I do think, though, that the BBC investigation highlights an important issue. Some private ADHD companies might be squeezing as many customers as possible through the door and hiring under qualified staff for maximum profit. According to leading experts, this could have troubling consequences for people who simply want help.
A press release issued by the Royal College of Psychiatrists in response to the documentary makes clear that people who’ve received a diagnosis from a private provider need a comprehensive assessment report to get access to medication and the right care.
‘This assessment should include a discussion of the patient’s symptoms, a full review of their mental health history and consideration of information about the patient that has been supplied by people who know them,’ it states.
This is crucial. Within the release, Dr Smith details: ‘I see many people in my clinics who’ve received a diagnosis from a private provider that we cannot accept due to concerns about quality. This is heartbreaking as I must tell them we cannot accept their diagnosis and they must be reassessed. This must change.’
The urgent way forward he is advocating for? ‘We must address the huge gap in NHS resources to see and treat all those who are coming forward as well as those who’ve already been waiting far too long. We also need to ensure that all services, both NHS and private, conducting ADHD assessments are working to high standards so that people are receiving high quality and safe care.’
To stress, this is not to say that all private ADHD clinics are shoddy. In the Guardian piece, Dr Smith states that: ‘Private providers are bound by the same National Institute for Health and Care Excellence (Nice) guidelines as the NHS, and many offer good quality care’.
These words neatly speak to the core issue, as I see it. For me, what we need to laser in on isn't the manufactured panic about ADHD ‘over diagnosis’ but rather NHS underfunding. Thirteen years of Tory governance has translated to years-long waiting lists and, as many seeking answers believe, has pushed people straight into the arms of private companies promising almost same-day results. I wish the Panorama team had focused on this instead.
Why I went to a private clinic for an ADHD assessment
I’ve had direct experiences of this underfunding, which I understand led to bad experiences with the NHS when asking for mental health help. It's why, when I sought out an ADHD assessment last year, I didn't even consider going to my local GP.
I'd heard that waiting lists took years, some climbing to seven, and I needed help earlier than that. I had my assessment done privately, a considerable privilege not afforded to most people who suspect they might have ADHD. I was asked to fill out lengthy questionnaires, the clinic asked for a parent and another person who knows me as an adult to fill out questionnaires about my behaviour. The assessment itself took two hours and was conducted by a psychiatrist.
Afterwards, I was given a comprehensive assessment report and a follow-up chat about my treatment options. But since watching the BBC documentary, even I began feeling paranoid about the legitimacy of my diagnosis.
When such feelings crept in, I had to remind myself that all professional health assessments require a level of self-diagnosis and that, no, I didn’t just ‘make it up’ and pay a shrink £1,500 to confirm my suspicions.
Most people only seek help if they know something is wrong – a broken arm, a persisting migraine or depression so bad that brushing their teeth seems an impossible task. I sought my ADHD assessment because I have been struggling with some of its symptoms, which were affecting my work, personal life and both mental and physical health.
I always knew something in my life seemed off; living through perpetual cycles of anxiety, depression, high highs and low lows was exhausting. My eventual diagnosis brought me so much clarity to my life, and quite frankly, I don't know how I functioned with this disability my entire life. I am now learning to live with it, and my life has improved immeasurably.
If I had the choice to get my assessment with the NHS without eye-watering waiting lists and knew I'd receive specialised care, I would have jumped at the chance (and saved a lot of money, too). I'm sure I'm not the only one.
Yet until the government fixes the NHS mental health services by properly funding and resourcing it, those awaiting an ADHD assessment will stay stuck between a rock and a hard place.