To wonder if I actually have ADHD after all?

[FlipsFlops]

I was diagnosed with ADHD last year at a private clinic after getting nowhere with the NHS. I did a fair bit of research and went to a named psychiatrist who specialises in treating ADHD and went in with an open mind not necessarily expecting a diagnosis.

Somewhat to my surprise I was diagnosed very quickly (I'd filled in lots of very lengthy forms before my assessment and off the back of that was told I was a clear cut case), and strongly encouraged to try medication (I haven't yet).

It's taken a bit of courage to tell family and friends - some have been supportive, some a bit sceptical ("but you seem completely normal?" "yeah I've seen all those TikTok videos too").

I still struggle a bit accepting the diagnosis and am prone to beating myself up about it (it's not ADHD, I'm just lazy, don't try hard enough, etc...).

Then I've seen this BBC news report today about the "ADHD private diagnosis scandal" suggesting people are being diagnosed by private clinics who don't actually have ADHD.

ADHD: Private clinics exposed by BBC undercover investigation - BBC News

Have I just been taken in by all the TikTok nonsense (even though I don't use TikTok) and exploited by an industry trying to sell me expensive drugs?

Or do I have a genuine neurological condition that's being called into question by journalists looking to turn everything into a some kind of scandal?

I don't honestly know what to think any more.

But the NHS has to buy those drugs so big pharma still raking it in.

I've struggled in full time employment. I can do it but I burn out. I had to drop to part time in my twenties. I don't need a carer though. I struggle with life admin though. It's bloody ridiculous because it sounds like I almost certainly will fall through gaps as will DS.

It's depressing.

I tried the NHS route and my referral to ADHD service got turned down based on a single tick-box form they asked me to complete about my childhood, as I scored below their threshold for assessment. I looked up the threshold and it was impossible to exceed it unless you exhibited significant behaviour problems and poor academic performance. I was an introverted, quiet, intelligent child so didn't behave poorly or peform badly. My psychatrist said I was a classic case of the kind of presentation that is only picked up in adulthood.

But that still makes me doubt myself, that I wasn't ADHD "enough" for the NHS to think it worthwhile pursuing.

The bar is also far higher for NHS. I was told at my last psychiatry appointment this month that while I have "a lot of" ADHD traits, since I can work full time in a professional job (with difficulty) I wouldn't meet the criteria as I "don't require a carer" to assist me.

But I think that this is ridiculous. I shouldn't have to need a carer for it to be affecting my life significantly.

Imagine if an autism diagnosis was treated in the same way. Many people on MN are autistic but also have careers, mortgages and husband/children to juggle. I have none of those things, and find my entire life a struggle. But I have a day job so I guess my life is in tip-top shape 🫤

Absolutely this, especially if you're willing to shell out the money for it because like me, you're so worn down with the day to day struggles of existence

It’s difficult because this is all down to trusting one NHS psychiatrist and sometimes they do get it wrong. Perhaps the other three were right or perhaps it’s harder to be diagnosed on the NHS as they don’t want the burden of treating and paying for that treatment. Maybe different questions were asked. One article isn’t a proper investigation and the sad thing is that many people with sen struggle hugely and this will just exacerbate that because some who have read this article will assume they have been incorrectly diagnosed.

The NHS has both incorrect diagnosed me before and also missed something that has been later confirmed. It’s not infallible.

Yep. The waiting lists for NHS adult ADHD assessments are so long for a number of reasons but one is that they're lengthy, in-depth and thorough.

Private assessments often aren't.

I knew this would happen. My social media is full of people who lose their keys once in a blue moon or whatever and self diagnose with ADHD. (not including you in this OP)

Its the trendy thing to have for grown adults who want to label a normal range of behaviours that have apparently never been an issue before. Its attention seeking crap.

Yes there are those who have sadly fallen through the net in the past that need the diagnosis and support. Its undoubtedly been undiagnosed previously but so many people are jumping on the band wagon its ridiculous. No wonder its being misdiagnosef.

If people really had any clue how fundamently ADHD can sometimes destroy lives, wreck childhoods, education and employment prospects. How living with children who have severe ADHD can rip families apart. No one would want it. Its not a cool thing to have, its a serious neurological disorder that can often last a lifetime.

Dc NHS diagnosis took months of indepth assessment and observations on a pathway by a multidisciplinary team including going in to schools and reports by teachers. A private consult of an hour simply cannot compare and nor should it.

Good luck with actually getting anything like this out of the NHS, especially for under 18s.

Yes. Poor concentration, being easily distracted, disorganised, forgetful, restless and impulsive can all be posttraumatic symptoms so an indepth assessment looking at the whole life narrative is so important.

OP, if you can, try the meds. How you react to stimulants can back up the diagnosis. If you have adhd then they will make you calm and give you more focus. If you don’t, you’ll just be running around like you’re on speed. Which is exactly what it is.

The pp who was diagnosed with bipolar, if you’re stable on a mood stabiliser, methylphenidate is actually proven to reduce the possibility of a future manic/hypomanic episode.

On Today, towards the end, they spoke with someone whose name I forget, but that he is the longest serving NHS psychiatrist working in ADHD. He said that the medicines used will cognitively enhance performance in anyone taking them, regardless of the diagnosis not being correct.

Indeed it should, should being the operative word.

Imposter syndrome is another facet of adhd and there are a huge number of people in real life and on MN who are frothing at the bit for a chance to invalidate you, tell you you don’t have adhd, that it’s not a real diagnosis. If you haven’t waited 3 years for the NHS to assess you then you haven’t got it according to these people.

If you feel like you fit the bill for it and you’ve been diagnosed then you have it. Doesn’t matter if you went privately or not. My own assessment was very thorough and they had access to my medical records, so I’m very confident in my diagnosis no matter how many ignorant people there are out there ready to shoot you down for being ND.

I will be watching the Panorama programme with interest, as I too question my diagnosis at times.
From what I've read, the undercover journalist was diagnosed by a psychologist followed by ten minutes with a psychiatrist. I had three hours overall with a psychiatrist. I think some private companies are more scrupulous than others, but I do wonder about the over diagnosis of ADHD.

I agree with some of what you say.

The experience of your DS is very similar to that of my DD who has also been diagnosed with ADHD and autism.

However, I also have ADHD but it wasn’t picked up in childhood or adolescence. Being able to have a private assessment as an adult saved my life. I was suicidal and needed help that the NHS could not provide (and I didn’t go to seek an ADHD diagnosis specifically, I didn’t know what exactly was wrong) and needed to be seen really quickly.

Seeing a private psychiatrist was the best thing I ever did. My GP readily accepted the diagnosis and I didn’t have to be “reassessed”.

The attitude of “people will tell you what you want to hear if you pay for it” is so insulting to all the drs out there who are not corrupt and it’s dangerous for the adults who are now having to put up with skepticism that they are “jumping on a bandwagon”.

what to you really know about the adults who you think are claiming to have ADHD because it’s “trendy”? Do you know them well, do you live with them and see their lives behind closed doors? You don’t really know at all.

DD2 was diagnosed by a private specialist paediatrician with twenty years plus experience and a face to face appointment. The medication is very much a last resort after counselling, therapy, adjustments at school, changing schools and years of emotionally based school avoidance.

The NHS were not interested in her beyond Tier 2 so private is the only option. Especially if you don't want to be fined by the local authority who keep asking for a diagnosis of anxiety.

This 100%.

I've no doubt that there are private clinics providing online diagnosis on the back of a questionnaire, but please don't equate all private assessment with these organisations.

If anyone has been diagnosed after comprehensive assessment according to the DSM criteria by an appropriately qualified multi-disciplinary team, their diagnosis is valid. And if they are helped by medication that is good for them, and potentially for the NHS and the economy. (Better health and able to work).

A good service will consider trauma as a differential diagnosis when appropriate and manage it accordingly.

Similarly, a good service will look at shared care arrangements with the NHS as they recognise that many clients are not wealthy, but desperate for help and aren't getting the help and support they need from the NHS.

The real scandal here is the lack of access to NHS mental health services.

The real scandal here is the lack of access to NHS mental health services.

Exactly. I don't like the spin being put on this at all.

Referral criteria shouldn't be just an ASRS form (I'm presuming that's what is was)

It's really common that some more inattentive but less hyperactive/impulsive people with ADHD, particularly naturally bright ones, can get through school fine and even excel. Often because they have engaged parents who do a lot of organising and prompting behind the scenes. It's often at Uni or in transitioning to adult life and independence where things start to fall apart.

If you want to pursue an NHS assessment, compose a letter to the clinic outlining what difficulties you think you've had throughout life. Could be something like 'I found the work easy at school but left everything to the last minute, often forgot my books, was late to class because I was wandering about or forgot the time but I didn't get into much trouble. I excelled in lessons I was really interested in but made the minimum effort in lessons I didn't care about and would get out of them if I could by saying I was ill At the end of every year it took hours to clean out my desk and locker because i was so disorganised and it was stuffed full of papers"

Or whatever really is relevant to you. I'm not trying to coach you in how to get an assessment 🤣

I don't take any medication now - with medical approval. Unfortunately I was very allergic (severe skin reaction) to every mood stabiliser I tried.

I try to view my symptoms now the way people with autism do - that it's a life-long difference I can work around rather than something I can cure.

I do have a few coffees a day though. A psychiatrist said this was ok to help me focus and stay positive.

I echo the try the meds view. I had all the doubts you did. Got some meds and fell asleep on basically speed. Never had I felt so calm and quiet. It was life in easy mode.

I don't think adhd is a negative thing or even a disorder. It's a different operating system. However our world is set up for one operating system with a 40 hour working week and plenty of behaviour/social conventions. I need a bit of help fitting in to that system.

Many, many anxious, depressed, traumatised or drug dependent people think/hope they have ADHD and would shell out for an assessment if they could afford it

And some lazy, feckless, narcissistic people too. Those are more in the minority but still happens

I was diagnosed literally last Friday aged 45. It has been a long time coming and I always knew something was different about me. The NHS trust who I’m under are overwhelmed and the diagnosis took over 2 years and my ADHD nurse also said that I’ve been referred to the ASD pathway as it’s pretty clear I’m autistic which I agree with.
My 20 year old was diagnosed with ASD when he was 8 and my 12 year old dd is 16 months into a 20 month wait for the ASD clinic and is under Alder Hey for her ADHD diagnosis ( both expected ) and the amount of information we’ve had to provide is unreal.

My ds’s dad ( separated 18 years ) is convinced he has ADHD too and is willing and able to pay for a private diagnosis. I would be interested to know what percentage of people who pay for a private referral are actually diagnosed. I bet it’s high.

I was supposed to start on meds on Friday and when the nurse did my blood pressure as a precaution it was dangerously high and she insisted on taking me to A and E where I spent 9 hours! Blood pressure tablets started today so I don’t think I will be able to take any ADHD meds after all.

It was the Wender Utah scale (you seem to know your stuff so hopefully that means something to you!). You get points for being e.g bad at maths and a poor student, angry, disobedient and in trouble with the authorities. I got points for being daydreamy, distractable and anxious but without the addition of those other indicators it wasn't enough.

I also sent in about 4-sides of A4 outlining the various ways it impacts/has impacted my education, work life, relationships etc. But the letter I got back rejecting my referral just said "You scored X, the threshold is Y, goodbye".

I sent the same 4-sides of A4 to the private pyschatrist who practically said "yup that's ADHD". It reads very similarly to what you've written above.