Getting privately diagnosed with ADHD in the UK

January 20, 2023

As I procrastinate exam revision, here’s a writeup on my experience getting diagnosed with and medicated for ADHD.

I think it’s important to publish this information, to de-stimatise mental health problems and encourage people who need it to seek help.

What was the process like going private?

There are a bunch of private practises in the UK, I went with Psymplicity health as I read some good reviews about them on r/ADHD. They’re based in London but do virtual appointments. I booked a diagnosis appointment, it was about a month waiting time to be seen. Their prices are not public as far as I can tell, there is a full breakdown of what it cost me below. I had no problems with them and I have no objections to recommending them. However I don’t have the ability to make a comparison with any other provider, it’s always worth doing your own research, finding independant testimonials, etc.

They sent me 6 total forms to fill out:

• The Adult ADHD Self-Report Scale (ASRS)
• The Weiss Functional Impairment Rating Scale – SELF REPORt (WFIRS-S)
• The UKAAN Handbook for Attention Deficit Hyperactivity Disorder in Adults behavioural scales. Current (pg.178) and child (pg184) to be filled out by me and someone who knew me well at the time, a close friend currently and a parent for when I was a child. (all google books links)

There were a few other background things to fill out regarding medical history, I didn’t contact a GP at all prior to this, I don’t know if the practise accessed my medical records, I don’t think so though.

How much did it cost?

The process of getting diagnosed, an initial prescription for medication and titration (figuring out the right meds and dose, ensuring you’re stable on it) is usually fairly standard. Paying for a prescription privately is prohibitively expensive; the expectation is that you enter a shared care agreement with your GP after titration is done. This usually takes 1-5 months, it took me three.

• The initial assessment to get diagnosed was 2 hours long and cost £850
  • Half is paid before the assessment, you still pay even if you don’t get diagnosed afaik
• A 1 month prescription of Elvanse was £106 (+£4 postage), may vary slightly depending on pharmacy and such
  • They estimated this would be £60-£100, if budgeting I would recommend over-estimating this.
• Each follow up appointment cost £245

Yeah, this is a stupid amount of money. It should not require privilege to be able access health care. I was extremely fortunate to be able to do so, it is abhorrent that these services aren’t free for all.

What was the assessment like?

The assessment was 2 hours long, the other forms had to be sent in at least 48 hours beforehand. It started off by going over some basic things, why I was seeking diagnosis, a rough overview of my life history. In my case, other traits made it difficult to identify ADHD - even to my mum who was a primary school teacher for most of my life.

The Psychiatrist was initially hesitant as the form assessing my behaviour as a child was not at all typical of a child with ADHD. We spoke in a lot more detail about this and about my life growing up. The concept of oversharing disappeared for me here: given the cost and work I had put in to get to this point, coming away without a diagnosis was not an option. I was generally apathetic about life at the time which likely made it easier to talk about things I would usually find more difficult. Please take my descriptions here with a grain of salt. Unfortunately this kind of interaction is the best system we have, still it sucks to have to relive crappy experiences just to prove to a stranger that you do actually have ADHD…

I expect this experience is different for everyone. I haven’t been able to recall lots of details about the assessment (hmm…) but after this deep dive the Psychiatrist started to form a profile of me and ask other specific questions. We seemed to get a pretty good understanding of my situation and he diagnosed me with innatentive type ADHD.

I received a letter confirming the diagnosis with details and context about myself. This is important as it will be needed to enter shared care with a GP.

From getting in contact in mid February 2022 to getting diagnosed was about a month, it took another week for my first prescription. I received a letter of referral in May. I finally got around to setting up shared care in August with my GP. They honoured my prescription and renewed it whilst the admin work was all being done and I later met with the GP to go over everything.

Medication

I was initially prescribed Elvanse (Vyvanse) at 30mg and was instructed to take my BP and weight weekly. At the first follow up, we decided to increase the dose to 50mg as I felt that whilst it had a noticeable impact, there was more “room” for the medication to work. It also barely lasted 8 hours, generally the aim is for it to last 10-12 hours. I’ve been on 50mg Elvanse since then. This meant that the 3rd followup was my last. I asked for a letter of referral to take to my GP, this confirmed the diagnosis, explained the titration and that they recommended I remain on the medication I was on. My GP was great and accepted this as long as I reported my BP/weight to ensure that the medication wasn’t affecting my appetite too much.

Effects of medication

I’ve been on medication for almost a year now, it’s taken this long to begin to understand exactly how they affect me - and I don’t think I understand fully yet.

The side effects of meds vary wildly between different people, when I first started on 30mg it took about a week for my body to get used to it. At the end of the first day I had to pee every 15 minutes for something like 2 hours, this is not totally uncommon as I’ve hard with Amphetamines, and thankfully was pretty much a one off. Elvanse is great because it’s “extended release” - it takes ~40 minutes for all of it to enter your blood stream for for you to fully “come up”. This makes it difficult to develop and addicition as it’s almost impossible for your brain to figure out the correlation. It does also make it harder to understand the differences between being on the medication vs off.

The more immediate affects I noticed was that I was much less likely to drift away from my current thought process, I was working as a full time developer at the time and where I had previously struggled for days to get over some mental block with a task, or to accomplish basic things. I was now much more capable of taking back control, deciding that I was going to do a thing (send an email, test a bug fix, work on a feature) and then actually doing it.

A common experience for people trying ADHD medication for the first time is that of your brain actually shutting up for once. This was definitely something I felt, particularly after the first month when my dose increased from 30mg to 50mg. I could sit at my desk, head empty, and be fine with it. Not for long, but that was still new to me - up until then, doing so would invite the many sporadic thoughts in my head to bombard my consciousness. Now it’s more like they’re unable to form at all.

Medication has generally made me feel a lot more relaxed, less fidgety - though still quite fidgety. Silencing much of the barely coherent angry noise in my head was a big improvement, it isn’t a magical fix to every issue though. Executive dysfunction is still a weight I have to carry around, though I find much more often I have the strength to do so.

That’s life

Only recently have I started to question the familiar sinking feeling of knowing I have to do something but desperately not wanting to. I’ve started breaking the cycle earlier by coming to the - always surprising - realisation that “well lets just do it”. I definitely still have a long way to go in this regard.

I haven’t found myself become more anxious since starting medication, mostly quite the opposite. I’ve always found caffeine to be relaxing in much the same way, though of course to a much lesser extent. This is absolutely not universal though. Much of my anxiety is rooted in my inability to live up to expectations, get stuff done, etc. I’ve been slow to challenge this but in general I’m learning that I totally can make and later uphold promises to people, I doubt however that ADHD is the only issue I’m facing in this regard.

Socially, it’s been interesting to find I’m better at staying present and actually paying attention to someone I’m talking to. I have to ask people to repeat themselves much less.

The future

There haven’t been many long term studies on Elvanse, it’s a relatively new medication and I think the longest studies are roughly 20 years. The general consensus is that there are probably some negative affects of taking amphetines daily for most of your life. It may slightly shorten your lifespan, your heart may wear out a bit faster. I don’t plan to stop or change my medication any time soon, I hope that through practise, therapy, and medication I’ll be able to spend the next 20 years unlearning the awful coping habits I formed in childhood. I’ve heard suggestions that as people grow older (ie towards their 50’s), ADHD symptons can become slightly less apparent. Perhaps it will be possible to reduce or stop medication in 20 years and continue to maintain good practises and function effectively without it.

That all being said, being able to get diagnosed and medicated has been incredibly helpful in understand myself. It is far from an easy fix.

To use a somewhat contrived analogy, lets say you’re dropped in a city where everybody speaks a strange language, completely unlike anything you’ve heard, and everyone gives you weird looks when you try to talk in English, in this hypothetical you have no idea that other languages exist, maybe you heard someone mention the concept some time but it’s totally baffling to you, beyond comprehension. That’s often how it feels to have ADHD and executive dysfunction in a society that don’t understand it. Getting diagnosed is like having someone explain to you that actually other languages exist, and then tell you what language the people in the city speak. Finding the right medication is like finding an old tattered translation dictionary, you can start to learn the language. It’s unlikely that you’ll ever become fluent - the analogy breaks down here, but safe to say nobody else should decide that you don’t need the dictionary anymore.