Over the weekend I started writing a post on diagnostic constructs and neurodiversity as I pondered how to think about mental ‘disorder’, its symptoms and causes, and what implications a different framework could have. On Monday (15th May 2023) BBC’s Panorama revealed their findings of their investigation into private clinics diagnosis ADHD. You can watch the episode here (or read about it here and here)
While I still wanted to publish my thoughts, it felt like they couldn’t come at a worse time. Here’s a snippet from my last post to give you the jist of why:
With so many psychological disorders, there is no one cause and many have overlapping symptoms or might affect the same areas in a different way. And sometimes the same symptom can have completely difference causes in different people. Take executive function deficits (planning, working memory, inhibition, selective attention etc) for example. Executive dysfunction is characteristic of ADHD, but it’s also seen in depression, anxiety, autism, schizophrenia and people who have experienced trauma. It’s theorised that executive function deficits are so common among psychiatric disorders as they occur developmentally downstream of other impairments, whereas in ADHD they are a primary impairment. It’s why impairment of executive functions doesn’t necessarily mean ADHD.
But what even is ADHD? Well it’s just a label for a set of symptoms, but none of those symptoms are exclusive to ADHD. Even when they look like ADHD, they might not necessarily be ADHD – even if they’re mistaken for ADHD. They could be though if we changed how we defined the construct of ADHD. Everyone has ADHD symptoms sometimes, but that doesn’t mean it’s ADHD. It’s the frequency and level of impairment that is often most telling, as well as the history of the symptoms, but what if we changed that? What if we just said anyone with these symptoms at any time has ADHD? Aside from the diagnosis becoming fairly meaningless, it would probably catch people who have executive function deficits for other reasons if they weren’t ruled out first.Life’s A Game Of Tags & Categories
Ever since things started coming out about the Panorama documentary I have been umming and ahhing about whether to publish those thoughts as I saw so many ADHDers distressed by it. There have been many valid points made on Twitter surrounding the piece, including:
While I agree that most people who seek a private assessment at the cost of several hundred quid are likely fairly sure they have ADHD and I don’t think seeking a diagnosis for a condition you have should be as difficult as it is, I also think it’s important to note the validity of some of the concerns raised – and I wasn’t alone in this thinking:
This thread highlights some problems with the investigation, starting with the fact the NHS knew it was an investigation (else the reporter would have ended up on the waitlist like everyone else) and the standard of care and thorough NHS assessment the reporter received may not be the same for others going through the diagnostic process.
Geriant also made some great points about patient safety:
He concluded the thread with a message to the ADHD community…
And it was that that gave me the courage to publish my last piece that I quoted above. Despite still being a student, I wrote my last post because I do think I have insight into some things that others in the ADHD community, but also the wider neurodivergent and/or mentally diagnosed communities, may not have access to.
I added my thoughts to the post I was writing, but I also wanted to make a separate post on this specific topic to expand on them without hijacking my original post – especially since I’d spoken about ADHD specifically.
The Panorama shed light on some shocking practice, but I think it is also important to note that these are not concerns for every private clinic. The lack of professionalism by the psychologist from Harley Psychiatrists shocked me, but felt like nothing compared to the casual diagnoses ditched out by others – especially when compared to my own experience. I think there is also something to be said about private clinics popping up out of nowhere with ‘ADHD’ in name to capitalise on the surge of people seeking an ADHD diagnosis – there is definitely something that doesn’t sit right with me about that!
While I’m not sure whether I agree with Dr Jessica Taylor when she says ADHD is over-diagnosed (I think it is much more complicated than that and varies across different populations), I do question whether all new ADHD diagnoses are ADHD. The pandemic likely had a big effect on our attention and executive functions and that paired with the rise of posts about ADHD, as well as many of the private clinics that have popped up to capitalise on this and the NHS right to choose, may mean that some of the new diagnoses of ADHD are actually misdiagnoses and impairment may be due to other things which were not ruled out. That said, I think this is more a problem with clinical standards and the need to conduct thorough assessments, collect accurate medical histories and rule out alternative causes of impairment.
Making some of the points I made in my previous post was not been easy given the current discussions within my communities, but I hope I have made it clear I am not questioning all new diagnoses. I myself have a private diagnosis after an NHS psychiatrist suggested ADHD but didn’t have the resources to properly assess me. Having had bad experiences with psychiatrists in the past I ended up going to a private clinic run by NHS doctors from the Maudsley (where I was on the waiting list anyway) and they also do not run a permanent clinic from their street address (presumably because they’re also working NHS jobs). The point I’m mostly trying to stress when I talk about misdiagnosis and other causes is the importance of a thorough assessment. There definitely seem to be some shoddy private clinics about that don’t take patients safety as seriously as you’d expect, so it’s not a huge leap to question the thoroughness of their assessments and accuracy of diagnosis too!
Even if a correct diagnosis is made, more care needs to be taken when prescribing medications such as psychostimulants. While you can absolutely find stronger and more dangerous drugs on the street compared to a private clinics, patients should be able to trust that their doctors are taking the appropriate precautions when prescribing them controlled drugs and informing them thoroughly of the risks and potential side effects as well as considering and monitoring any interaction the medication may have with other medicines or health conditions – mental or otherwise. Some might say such drugs should not be the go to treatment option, but it is important to note that stimulant medication is generally the most effective treatment for ADHD, even if there are other options available (such as non-stimulants, dietary changes etc.)
Despite my agreement with a lot of the points raised and the importance of being open to criticism when it comes to the diagnostic process, I always feel anxious when ADHD is in the media – especially more recently.
How do you feel about Panorama’s documentary?
EDIT: Dr Mike Smith, the NHS psychiatrist from the documentary has published a piece with The Guardian saying the Panorama episode revealed the fallout of decades of underdiagnosis and NHS services that are no longer fit for purpose, but the resulting growth in the private sector has made it more difficult for regulators to scrutinise. It’s a really good and balanced read which covers the stigma the diagnosis faces, previous underdiagnosis due to lack of awareness, the importance of ruling out other conditions and the need for better minimum standards to ensure consistency across sectors.
It feels good to know that NHS psychiatrists are doing what they can to the reduce stigma around ADHD, but also that Dr Smith is listening to the community in general and trying to offer solutions to improve services (and safety) for those seeking an ADHD assessment.
I did see a tweet saying this should have been the narrative of the Panorama episode but I still think it was important to expose clinics with poor standards, even more so because the NHS waitlist so long and they were private clinics capitalising of that with substandard practice. With such a long waitlist many are forking out for private assessments, which are expensive anytime let alone in a cost of living crisis, so hopefully this documentary will encourage more research to find reputable clinics and send a shudders down the spine of those provide poor standard of care.