uk adhd experience

I'm in the UK too. I was diagnosed with inattentive ADHD last year and this was my experience:

Back in 2014 I tried to get assessed for ADHD, by asking the psychotherapist I was seeing for a referral to ADHD services, he asked me a couple of questions and then agreed to refer me. I got as far as them sending me forms to fill in and send them stuff, but they said they would not do a full assessment for me because it was unlikely I had ADHD because my primary school reports showed no signs of it. So that went nowhere. Got discouraged and didn't push it.

Late 2019 I decided to try again for it. This time I went to my GP. I explained to him that I wanted an assessment and why I wanted it, ie why I thought I might have ADHD and how it was affecting my life as an adult, eg I had dropped out of university.

A few years ago I read some really useful advice about getting your GP to help you and it essentially said, don't just say 'my leg hurts' or w/e, but also to say how it is affecting the key areas of your life: home, school/work, family/relationships). So I used this advice with the GP whereas with the psychologist in 2014 I pretty much just said 'I think I have ADHD' and answered a couple of questions so I think maybe the GP's referral letter was better cause of that.

So my GP referred me to the Adult ADHD team, early January 2020.

Late February 2020 I got a letter from the ADHD team saying 'we have accepted the referral, please fill in these forms'. They gave, I think it was 3 forms? Maybe more but the ones I remember are 3. One for me to fill out, one for someone else to fill out about what I was like age 5-12, and one for someone else else to fill out about what I am like 'in the past 6 months'. So for me I gave the age 5-12 one to my mum to fill out, and the 'past 6 months' I gave to my sister but it doesn't have to be family, just someone who knows you reasonably well in those time periods.

The forms were called BAARS-IV, you can probably find them online. They basically ask about how frequently you showed ADHD symptoms (both inattentive and hyperactive-impulsive). So questions like how often did I get distracted by irrelevant things, or was forgetful, or was fidgety or talked excessively etc.

I think this is really important: I made clear to my mum and sister, be honest. Don't pull any punches. Don't try to spare my feelings by being like 'well I guess it wasn't that bad'. Be brutally honest.

Those forms were rough to read to be honest. There's a part at the end of the form which is a free text bit, asking them to give examples of times/situations where you exhibited those symptoms. It was pretty unpleasant/embarrassing when they gave the forms back and it's like, for instance one of the symptoms the form asks about is basically 'does the person interrupt or intrude a lot' and both of them had written on the form that I often barge into other people's conversations and interrupt / talk over them without seeming to realise that I'm doing it. And how it's sometimes difficult to have a personal conversation when I'm around because I will always interrupt with some minor/irrelevant question that really should wait. They'd never said anything about it to me so that was a bit of a punch to the gut to read that I had been annoying people without knowing. But it's really important that they are brutally honest on the forms because it is the only way to get the help you need. It is not the time to be tactful.

I sent back the forms April 2020. In...I think May? 2020 I got a letter basically saying 'you're on our list to be assessed, but Covid has happened and everything's closing down, so it will be a long wait but don't worry, we haven't forgotten about you, you're in our files and we will get to you eventually'.

Then I didn't hear anything from them in over a year. Then, late June 2021, suddenly I got an email from them saying 'we've given you a virtual (ie video call) assessment appointment, 4 days from now'. Like...almost no warning at all, after ages of silence haha. I don't know if maybe somebody cancelled an appointment last minute and I got it, or if it's just how they normally work.

When I'm on waiting lists for medical stuff I often ask them to put me on the list that if they get a late cancellation, I'm often free to take an appointment on really short notice. I can't remember if I did that with the ADHD place or not but that's just a tip generally, sometimes medical places do make a note if you tell them you can do short-notice appointments and that can sometimes get you in much earlier than you would have otherwise. A couple of times I've had a call like 'can you come in for an MRI scan literally tomorrow morning, we've just had a cancellation' and that means I don't have to wait months for it or whatever. You know?

So, late June, video call assessment. YMMV of course but mine was 2 and a half hours long. With a 'specialist practitioner' though I dunno what that means. He called it a diagnostic interview. To be honest I don't remember a lot of it but he basically went up and down my whole life asking about all sorts of things, how I got on at school, work, uni, home, relationships, symptoms of ADHD, like it was basically a 2 and a half hour conversation, some of it felt really informal and some of it was more like y'know 'please rate on a scale of 1-10 how distracted you get' or whatever.

I remembered the previous time I tried to get assessed for ADHD, where they said my primary school reports were too good (good academically, mostly good behaviour) and so I made sure to talk about like...stuff that I felt like kind of hid/masked my ADHD as a kid, but that it was definitely there?

Idk how to talk about this without sounding like a dickhole but just like. I'm not trying to brag but this is the kind of thing I mean: I was in the 'gifted and talented' program in primary school , and generally was often ahead of the rest of my age group, academically? And those things kind of combined to hide ADHD because like, I daydreamed all the time in class and got distracted a lot, but it doesn't show up in my school reports because I would always pass tests/exams/whatever, and be able to answer questions about the lesson if called on, but like..because I knew it already, or could guess, rather than because I was actually listening if you see what I mean. And I was often in specific gifted and talented lessons that were a really different style, that happened to be really suited to someone with ADHD, sort of by accident.

Sorry I'm kinda failing to word what I mean very well. Basically what I'm saying is that, being a particularly smart kid meant that I didn't start struggling until like, mid secondary school / sixth form / uni at which point it all fell apart because it wasn't so easy any more to pay zero attention to a lesson and then just skim the handout and naturally understand whatever they were teaching.

And I made sure that I expressed all this to the assessment guy, and he was really good at like...looking past my school report or whatever and asking stuff about like, did I sometimes do the homework but then forget to actually bring it in to school? And other stuff.

I had a looooong Skype call with my mum and sister the day before the assessment where they like, helped me to make preparation notes for the appointment and like, reminded me of stuff I forgot or too young to remember or whatever, gave like, outside perspective too? So I had those notes with me for the assessment and I was able to quote my mum directly saying like "head in the clouds permanently" "any time he was given a timetable or an important schedule or thing he was supposed to carry around with him, I would have to confiscate it instantly, make 10 copies, and issue them one at a time as he constantly lost them" "constantly clueless without meaning to be, could never rly on him to be in the right place at the right time with the right stuff, but wasn't naughtiness, it was just what he was like". Stuff like that from when I was a kid that wouldn't show up in a school report but like, made clear that there were ADHD symptoms present back then.

At the assessment he said 'I am fairly confident in giving you a diagnosis of ADHD, inattentive presentation' and in his letter to my GP a couple weeks after the assessment he wrote stuff like "although it initially appeared that there was no clear indication suggestive of childhood onset of ADHD, the diagnostic interview, and BAARS and DIVA prove otherwise [...] suggests possible late onset of childhood symptoms, or availability of support system which provided scaffolding / masking effect, lack of awareness of ADHD etc".

He warned me that the waiting list for actual treatment/prescription, right now because of Covid backlog (and also just general wait times), would probably be about two years. So right now I am diagnosed but not having any treatment.
That got LONG, sorry. But maybe it gives you a bit of an idea of 1 person's experience of getting a diagnosis for ADHD.

Timeline TLDR:
2014: tried + failed to get an assessment
Jan 2020: went to GP, GP referred to Adult ADHD team
Feb 2020: ADHD team send forms to fill out, I send them back in April
June 2021: ADHD assessment - 2.5 hour long virtual video call interview
July 2021 (2ish weeks after assessment): Diagnosis letter sent to my GP
Told there will be a further 2 year ish wait (so, mid-2023?) for treatment.