Hello! We’re back.
If you’re new to this little project, let me bring you up to speed. My name is Matt Hughes. I’m a journalist and developer from Liverpool, England. And I have ADHD.
The UK doesn’t make life easy for people with ADHD — or for those who suspect they might have the condition. ADHD remains woefully underdiagnosed. According to a 2021 article published in Frontiers in Psychiatry, around 0.1 percent of UK adults have a confirmed diagnosis, whereas the worldwide prevalence stands between two to four percent.
Put simply: most people in the UK with this condition aren’t getting the help they need. And so, they stumble through life. They struggle at work and school. They experience problems in their personal relationships.
I started this Substack to help people with the condition — or those who suspect they do — find and obtain the support they need.
This is my first ‘real’ post. I want to make it useful. And so, I’m going to talk about the mechanics behind how you get an adult ADHD diagnosis in the UK.
Patients have three options: The NHS, exercising their Right to Choose, or paying out-of-pocket.
Each approach has its own advantages and disadvantages. They all require some combination of hustle, patience, and money. We’ll explore them in detail.
Obtaining an ADHD Diagnosis Through the NHS
I need to do some obligatory throat-clearing here. I think the NHS is awesome.
My wife works for the NHS. I was born in an NHS hospital. I’ll probably die in one, too. Despite the funding cuts and demographic challenges, it continues to deliver world-class healthcare.
It says a lot about our society that we don’t force people to declare bankruptcy because they have cancer. And I will defend the concept of a healthcare system that’s free at the point of delivery until the day I die.
But when it comes to adult ADHD provision, the NHS falls short.
Put simply, there aren’t enough ADHD specialists to meet the rising demand for diagnoses and titration. It’s not uncommon to hear of multi-year waiting lists. And so, obtaining an adult ADHD diagnosis from the NHS is impractical for most.
Still, let’s talk about how this process works.
First, you need to speak to your GP and ask them to refer you to the local ADHD service. Unlike other conditions, you can’t self-refer. If they’re unwilling, ask for a second opinion.
That was the easy part. Now, it’s a waiting game. Depending on where you live, you can expect to wait for several months (or even years) for the initial appointment with an ADHD specialist.
When I first sought a diagnosis from the NHS, my GP warned me it could take around five years for my first consultation with a specialist. She advised me, point blank, to go private if I could afford to do so.
How long you’ll wait is determined by where you live. There’s a huge amount of variation between individual trusts.
Some deliver a relatively timely service. One person on the ADHDUK subreddit reported waiting a month in Hertfordshire. One FOIA request sent to the Southern Health and Social Care Trust (which covers parts of County Armagh, Tyrone, and Down in Northern Ireland) claims a wait time of 9-13 weeks for routine referrals.
By contrast, I’ve heard of two-year waiting lists in Manchester. One FOIA request sent to a London NHS trust showed average waiting list times of 220.9 days in 2021 — an increase of 39 days compared to the previous year. In Nottinghamshire, the average wait is twelve months.
At first glance, there seems to be an urban/rural divide when it comes to the provision of adult ADHD care. At the very least, there’s an incredible level of variation between regions. You might wait a few weeks. It may be years.
It’s a postcode lottery.
Obtaining an ADHD Diagnosis Through Right To Choose
Here’s the good news: your NHS GP can accelerate this process. You just have to exercise your Right to Choose.
Introduced in 2014, the Right To Choose gives those seeking mental health treatment the freedom to pick the provider that delivers their care. Through this, you can obtain a diagnosis from a private-sector healthcare provider, while the NHS picks up the tab.
When it comes to adult ADHD, there are three main national providers: Psychiatry UK, Clinical Partners, and ADHD 360. In addition, there are a handful of smaller clinics that accept RTC patients. The ADHDUK website has a comprehensive list of these.
Here’s the thing: these private providers are in heavy demand.
And so, new RTC referrals can expect a lengthy wait. Psychiatry UK estimates a wait of six months for an initial appointment. ADHD 360 is currently taking bookings for Summer 2023.
There are another couple of caveats worth mentioning.
RTC patients are usually limited in how often they can titrate — or adjust — their medications. For Psychiatry UK, the wait time is around 3-6 months, per the ADHDUK website. For some, that’s not a problem. They may get lucky and find the perfect drug and dose combination to match their distinct brain chemistry.
But in my own experience, I took several months of trial and error to find the right medication and dosage that worked for me.
It’s also worth re-iterating that patients can’t refer themselves to these providers. Your GP must write you a letter. If they’re unwilling, you can ask for a second opinion from another doctor at your practice, or switch GPs and hope they’re amenable.
And if that fails, you’re left with one final option: paying out-of-pocket.
Going Private For Your ADHD Diagnosis
I went private. It was expensive. I paid £300 for my diagnosis. I pay a further £100 for each follow-up appointment. But it was (and is) worth every penny.
It allowed me to get a diagnosis in a matter of weeks, not months. I could adjust my meds as required. I was able to build a relationship with my psychiatrist, and with the benefit of hour-long appointments, he was able to get to know me and my background. It was just… better.
In many cases, your private ADHD psychiatrist will work alongside your NHS GP. This is called shared care, and it’ll save you a ridiculous amount of money.
While you’ll pay out-of-pocket for your diagnosis and ongoing follow-ups, you’ll be able to get an NHS prescription for your medication. And that means you’ll spend £9 on meds each month, not £130.
Of course, your experience may vary from mine.
The biggest variable is cost, which inevitably differs from place to place. A private ADHD diagnosis in London costs more than one in Liverpool, where I live. That’s because everything costs more in London.
My psychiatrist — who is awesome, by the way — is willing to issue private prescriptions for free. Some charge for that. Mine is willing to write to my GP whenever my meds change. Again, some providers charge for that.
There’s a caveat here. Well. Two, really.
The first is obvious: it’s expensive. You need the cash upfront. I was lucky enough to be able to afford my diagnosis and ongoing follow-ups. Others won’t be as fortunate.
Furthermore, many private providers are struggling to meet the surging demand for ADHD treatment in the UK. As a result, you may still have to wait a while for that initial appointment. My psychiatrist has temporarily had to stop accepting new patients.
Your best bet is to shop around. Look for providers in your town and beyond. You may have to travel for an appointment.
Why The UK Makes It Hard To Get An ADHD Diagnosis
We’ve explored the mechanics of getting an ADHD diagnosis in the UK. It’s a pretty grim picture. Whatever route you go down, you will have to wait.
It’s worth talking about why. The Frontiers in Psychiatry article mentioned earlier lists several issues. These include (but are not limited to):
A lack of dedicated resources
Soaring post-pandemic demand for ADHD services.
Widespread social stigma surrounding the condition
The perception that ADHD is a “medicalized social construct”
The perception that ADHD is a “catch-all for naughty behavior”
Media fearmongering about the potential abuse of ADHD medications
The article hints at several important reforms, including a growing role for GPs and nurse practitioners in the treatment of ADHD. And that’s important!
NICE (National Institute for Clinical Excellence) guidelines impose restrictions on who can diagnose and treat ADHD. It’s a pretty short list, including pediatricians (for kids, obviously), psychiatrists, and clinical psychologists.
By contrast, the US is a lot more open-minded. It allows a broader array of healthcare professionals to diagnose and treat adult ADHD. These roles include family doctors, nurse practitioners, social workers, and master-level counselors.
I really wish the UK had something similar. Because we over-rely on psychiatrists to treat and diagnose ADHD, we have created a massive bottleneck. This has resulted in massive waiting lists across both the public and private healthcare systems.
As more people become aware of ADHD, those waiting lists will continue to grow. This situation — with its massive human cost — won’t improve without major and ambitious reform.
But let’s suppose we let GPs diagnose and treat ADHD — much like they do other mental health conditions, like depression and anxiety. We’d slash the time it takes to start treatment from years to days. People will be able to start to fulfill their potential at school or work. We could alleviate so much unhappiness.
Wrapping Up
And breathe. We’ve reached the end.
If you made it this far, thanks so much. I started this Substack because I wanted to deliver practical information to those with adult ADHD, or those that suspect they may do.
In some respects, I consider this post a failure. The overall message is: “You’ll have to wait unless you pay out of pocket, and even then, it could be a few months before you see someone.”
Of course, it’s a bit more nuanced than that. Geography plays a role in how quickly you can get a diagnosis. And both the private and public systems are constrained by a narrow rulebook that no longer makes sense in a world where more people are aware of the condition.
It sucks. Still, I hope you got something of value from this post, even if it's just a sense of righteous indignation.
The next post — I hope — will be better. I’m going to talk about the cost of private prescriptions for ADHD medications. (Spoiler: they’re shockingly expensive). We’ll also talk about how to shop around for the best deal, and take a closer look at how shared care works.
If that piques your interest, please subscribe! I’m hoping to write at least one post each week and I’m already building a content plan for the months ahead.
And if you have any thoughts, feel free to drop me a tweet or an email, or just leave a comment below.
Hi Matt, this is a great and informative piece. I too am considering seeking a diagnosis, but have not yet taken the plunge.
I tried to book an appointment with my GP which took a huge amount of stress just to ring, then I had to fill out a form to give the details of my symptoms (which doesn't have the space) and then the GP emailed back and asked me to write a paragraph on 5 questions that cover how my life is effected. Needless to say perfectionist took over, I have written and rewritten it over and over and still don't feel confident in my answers. Now I've procrastinating on it for about 5 weeks...in the meantime I've missed work deadlines, had a number of meltdowns over trivial things and today I have spent the day in bed depressed because I've been overwhelmed this week and can no longer deal with anything.
I will look out for your new posts, I think they will help me understand the unknown of what to expect and what the best options are. My biggest fear is they will just tell me I'm chronically lazy and to just get my life together.