Are ADHD waiting lists ever going to improve?

[MaddenA]

I've been told I could be waiting 7 years. Nearly bought medication a few months ago but panicked when I read about possible side effects so bottled it. Moment of madness. I'm desperate. How can it take 7 years for an assessment? I wish I could afford private.

I work in a private neurodevelopmental clinic for children and adolescents. We do many ADHD/ASD assessments. In regards to ADHD in our clinic not everyone gets a diagnosis, usually about 50%. 25% actually show symptoms more in line with ASD (so we would advise appropriately) and the other might have a mix of anxiety, trauma, chronic sleep problems etc. We always look for potential differential diagnoses.

If anyone is seeking private assessment make sure the clinic follows NICE guidelines and make sure your Gp is willing to do shared care (we always ask for a GP letter). Unless you are willing to pay for private prescriptions then no shared care is fine. The assessment should consist of a thorough neuro history, Conners 4 from parent and school, QB test and then a medical. We sometimes do a school based observation. It is always an MDT of psychologist and paediatrician.

Op please don't buy medication that hasn't been prescribed. It is potentially very dangerous and needs a medic to assess your suitability based on not only your health needs but also consider your wider family medical history (e.g. cardiac arrhythmia, thyroid problems, sudden death under 40 etc). There can be many contraindications.

Also we are very cautious to prescribe medication if there is also a possibility of ASD as the medication can make ASD symptoms more apparent which can be distressing.

Only during titration. Once you are on a stable dose you can get stared care with your nhs gp

@underthemilky this isn't always the case. Gp's are aware that there are some quack organisations not following NICE guidelines and won't always agree to take it on.

Gosh, I got lucky! I only had to wait a year for my assessment, i was diagnosed in January 2023

To those asking what a diagnosis as an adult can do.... it can be life changing tbh

And it can also lead to awareness about other conditions you may have. Up until taking ADHD medicine, I had no idea that I'd spent my entire life heavily masking autism, PMDD, It can bring relief after spending your entire life wondering why you were drowning and everyone else was floating with ease

I didnt realise I've spent my entire life stimming ect. Theres been so many benefits to having a diagnosis for me mentally.

I've spent years hating myself and feeling like an imposter, now when I look back I'm actually really proud of how much I've been able to achieve, despite having difficulties.

A lot of people do jump on the ADHD bandwagon, bad memory, late ect, but if you really have ADHD you know it goes far deeper than that

After spending a life time hating myself, masking and wondering why I struggled so much with certain things

It's been such a relief knowing I'm not a failure, I'm not stupid, I'm not an idiot. I unfortunatly have a condition ( is that what we call it? ) that has negatively impacted my entire life. And that's not my fault.

I've been able to learn ways to support myself instead of forcing myself to just get on with it because other people can, I could go on and on. The benefits to a diagnosis have been life changing for me. I used to really despise myself

I've been on my local NHS waiting list for 7 years. I went private 4 years ago. Most people don't wait on the NHS waiting lists though, they do right to chose via their GP and get seen within 6 months via a video call. I totally don't trust those assessments and think everyone should have a QB test to diagnose, but I also don't think waiting 7 plus years is reasonable either so it's better than that. I did get NHS prescriptions from the start though, so private diagnosis isn't always as expensive as people say it is.

Yes, it's very much a big thing at the moment, but more than one in 10 people have it, and most weren't diagnosed as children so it is not surprising that so many people are being diagnosed now with more awareness. Interestingly there isn't the same judgment and stigma from adults that self diagnose depression and request antidepressants from their GP. Nobody complains about the cost to the NHS for people getting 'happy pills' but do take umbridge with people who want something to improve their executive function. The stigma is a big issue.

Today is ADHD day on MN - which is good because I needed something to hyperfocus on tonight.

In a word, no, the waiting lists aren’t going to get much better. Too many of us weren’t diagnosed at school and, like yourself (and me), have only recently tried to get the help and support they need.

I got lucky - I started looking into it three years ago and was able to exercise my Right to Choose and pick Psychiatry UK, an online service who reduced my five year waiting list to an assessment date down to eight months.

You can still do that but now, if you don’t live in an area where these services have a shared care contract in place already, your GP can refuse to take you back on for prescribing again so you get stuck with having had an assessment and gone through titration, tasted what life is like medicated but with no way to actually get prescribed the drugs, even though your GP referred you to that service in the first place. I had to fight tooth and claw, unmedicated, and my GP finally agreed to take me on…if I got another assessment with my local BANDS service (5 years and counting again). I contacted Psychiatry UK in absolute pieces as the meds helped so much…and they kindly agreed to prescribe to me on NHS rates until my assessment comes around, even though no-one is paying them to do so anymore. Of course, now we’ve been hit by medication shortages so it’s touch and go whether I’ll be able to get any consistently.

It’s a fucking mess. I am so, so sorry you have to go through this. I know exactly what it’s like to be in your position and I am so angry that you are stuck like this. It‘s not right. Just remember…it will pass and you will be able to move forward. Take a deep breath, look into Right to Choose, just in case there is a chance you happen to live in an area where one of these online services has a shared care agreement and look into how to maximise your non-meds coping strategies now you know you have ADHD. Meds give me an edge, but they don’t ‘fix’ me. Most of the change comes from just knowing I have ADHD and tailoring my strategies for life to mitigate my condition.

If you ever want to just talk or vent, I’m here, you can DM anytime.

That is a valid point

The prevalence of ADHD at 5% was estimated in 1972, so I don't think you can realistically say there are rising levels when the 5% haven't even been fully identified yet.

It's always been prevalent it's just people didn't have a name for it before.

The first mention of a condition approximating ADHD in any medical textbook is from something like 1753.

It is not currently thought that smartphone use contributes to ADHD although people with ADHD may find smartphone apps more attractive/addictive than other people. (I know that anecdotally I find them much less interesting when I'm medicated - a very weird effect I had not expected). People with ADHD also have a very difficult time breaking bad habits/making positive lifestyle changes (e.g. stop smoking, eat healthier, exercise etc) so it might appear like there is a correlation between someone's ADHD symptoms and their excessive phone use but it's more likely to be the other way around. (The same seems to be true with children and TV).

That feeling you get of your attention span being shorter after using smartphone apps is very temporary - stop using the apps, start spending more time doing things like reading or other hobbies and it goes away. That's not what ADHD is, ADHD is a chronic condition.

It's always been prevalent it's just people didn't have a name for it before.

Exactly. It infuriates me how people handwave it away when my symptoms were ruining my life, meaning I couldn’t work or drive or manage normal daily tasks. I was just seen as ‘useless/pathetic/lazy’. I was clever on paper but in life I felt like an idiot and had no idea why I couldn’t just do the things that other people did.

Diagnosis and medication changed my life and saved my relationships with family, who now know and understand what I’m dealing with instead of getting angry and pushing me away.

My ds fell between not being able to manage main stream school but being too capable for the alternative.

I asked my education authority if there was a school for dc who had dyslexia/ADHD etc who struggled in main stream school but were perfectly capable in every other aspect of their lives and I was told No there wasn’t.
It was either main stream senior schools or the special schools for dc who would never live independently

A few years later Dd left school and signed up for agency work to be a substitute teaching assistant.
She was placed in different schools. One of which was a school in our county which was a senior school for children who had ADHD/Dyslexia/Autism etc but as adults they would be perfectly capable of doing everything everyone else does, it was just in the main stream school setting they struggled.

Dd came home after her first day and immediately said that the school she had been sent to was exactly the school her brother would have thrived in.

It was exactly what I had asked my local education authority for and they had said didn’t exist.

Actually quite annoyed as I could see ds struggling with school but failing and the alternative was to give up work and teach him myself which I did

100% this.

ADHD didn't exist as a diagnosis when I was growing up. I was told I was lazy, disorganised, impulsive, unreliable, never finished anything, pathetic, entitled and lazy for not being able to drive, massively oversensitive and overthinking everything. All true in a way, except I was desperately trying to be the opposite of all these 24/7 and it was exhausting.

I am so happy on ADHD meds. I don't give a damn when people eye-roll and think diagnosis is an excuse for lazy people to feel sorry and make excuses for themselves. I know they are wrong. I've done more in the last month than I did in the previous six months.

I feel such a pang, wondering what I'd have been capable of if I'd had medication from my teens. I'm less than 10 years from retirement, so that was decades of failure and dropping out and being judged for being so useless despite intelligence. But I'm making up for lost time.

Contrary to what many people on here have said, modern life HAS increased the severity of ADHD and thus the noticeable prevalence.
Modern life/tech has shortened everyone's attention span and difficulty with delayed gratification and focus. For people with ADHD this has meant an even tougher time developing those skills. People who before had mild ADHD that was manageable in regular settings through developing strategies now have a much greater degree of difficulty and now require diagnosis and medication. What before might have been a bit of difficulty with staying focussed, sticking to task, impulsivity and distractibility that could be improved with behaviour coaching and self selected activities that suited them now has developed into an insurmountable disability that requires medication to function. Every psychiatrist I have spoken to (3x dc and myself means I've spoken to several over the years) has said the same.

It doesn't mean modern life has reared more people with adhd. It means the degree to which adhd impacts negatively has been magnified to the point that it's obvious, diagnosable and requires medical treatment.

Thought this was interesting

ADHD is not technically what this should be called.
Dopamine deficiency is the more accurate name and the reason why we can’t concentrate for a long time on something that isn’t giving us enough interest to create the dopamine we need to carry on.

Give us something we enjoy and time and the world stops

Tech might give shortened attention span but that shouldn’t be confused with what essentially is a genetic condition.

ADHD is so much more than a short attention span. There are so many different facets to this condition

No this isn’t true.

It was never a ‘bit’of difficulty staying focused. It’s much much more than that……

To blame screens for a genetic disability is unfair and untrue.

ADHD has coincided with the rise of screens as sm is making people more aware of their symptoms.

My dd has ADHD. She sees a pyschiatrist and a psychologist. Neither of them think it’s to do with the rising use of screens. It’s to do with wiring in the brain.

I was diagnosed with ADHD in my late 50s
I don’t watch tv, I don’t have a job that involves any screen time

I do however have at long list of family members who have ADHD

Screen time and a bit of modern life stress doesn’t lead to you brain changing shape.

I would go as far as to say that I would question someone’s ability to diagnose ADHD if they are the psychiatrist in charge of diagnosing ADHD and think it comes from too much phone use