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.

Friend paid for irrefutable private diagnosis, still had to fight the education authority for three years.

You think the system is still exactly how it was 11 years ago? Thanks for that, I needed a good belly laugh.

No, I was expressing surprise at how much has changed. Glad you were amused by your own inference though

What a ridiculous goady post. Even the NHS priority list that myself and my children were on is way longer than 4 weeks.

So why did you add

“I honestly don’t believe it’s difficult to get an assessment or diagnosis if you actually have it.”

So even if you get a diagnosis they won't do anything meds wise until the international shortage improves

They changed mine in November and I was in the middle of titration so started on a low dose to increase gradually- they won't increase it or give me even an appointment for a med review until the supply situation is solved

It's bat shit

that was in reference to actually getting a diagnosis, I don’t see how you could interpret that as a reference to the 7 year waiting list. How could the outcome of an assessment impact the length of time it takes to get it?

The difficulty is in the length of time you have to wait on the NHS in 2024.

Yes, obviously that’s a challenge. I was just stating that people who genuinely have the condition won’t struggle to get a diagnosis with the NHS. Whether or not a person has it won’t make a difference to how long they have to wait… not sure why that has been misinterpreted as I’m pretty sure I didn’t say nothing has changed since 2013 or that having adhd means you will be seen in 4 weeks. Perhaps i was diagnosed before the increase in referrals who knows

Hear hear

@ohyesido what you wrote was

I honestly don’t believe it’s difficult to get an assessment

Which has led everyone to believe that you don't think it's that difficult to get an assessment.

@Craftyy I needed to read this today, thank you

Well they will as a 7 year wait is a struggle.

Your not wrong with this.

im aware of lots of trained professionals who believe that giving ADHD medication is the quickest way to diagnose.
the meds won’t work if you don’t have adhd. Obviously there will be a tiny minority where this might not be the case but still.
this will never happen though, highly unethical.

@ohyesido
So you got a diagnosis in 4 weeks over a decade ago so you don't think not is hard to get a diagnosis now.

I guess the medication doesn't improve critical thinking skills does it.

If you think having to wait 7-10 years doesn't constitute 'hard to get' then I'm not sure what you would consider an obstacle.

7-10 years from the point of people thinking there us an issue will take must people past education. An education ruined by a lack of timely diagnoses.

But you got yours so all is good.

I think the surprise over waiting lists is misplaced to be honest. People seeking ADHD/ASD diagnoses has absolutely skyrocketed in the last 5 years alone. Of course they’re not going to be able to keep up with the demand. 10 years ago I hadn’t heard of ADHD outside of the context of ‘naughty teenage boys’. Now it seems every other person is seeking a diagnosis for themselves, their children or both. It’ll take time for the system to catch up, years and years probably.

I've got almost a quarter of each ks3 class on the list. It's bonkers. Teachers literally do assessment forms daily. And even then, let's say they all get a diagnosis, how can I possibly manage a supposedly mainstream class with so many needs?

I'm at my wits end with the amount of need i'm meant to manage in every class with no TA or help, in classes of up to 35 kids.

We need a mid tier of school for these children that meets their need, because it's impossible in most classes where i'm dealing with, for example, mutism, adhd, autism, odd and phobia as well as trying to teach. I am failing all children -when i'm following regulation policies for SEND, there are children waiting to resume teaching after we've had to evacuate the classroom. While i'm having 2 minute restoration conversations with a dysregulated child outside, anothernone might kick off.

I did a few years in SEND teaching and I liked it but we need to be honest. There's a HUGE tranch of kids that won't meet special school status but cannot function in a normal classroom. There needs to be a better way for everyone.

Yes I couldn’t be happier to have mine.

I will try to clarify one last time.

I said getting a diagnosis is not difficult when you actually have the condition. That’s been inferred as me saying the wait list shouldn’t make getting a diagnosis difficult.

well, I’m not responsible for how you interpret my comments and I’m sorry for your experiences

To be fair several have interpreted your post in a similar way as it was pretty plainly set out. Maybe you need to think how you word things before you post next time.

If it's about 5% of people which is what the current research suggests, that's quite a lot of people - one or two in every classroom.

Go back to 1990 and there were something like 40 children in the whole of the UK on ADHD medication, which suggests that there weren't 1-2 children in every classroom being diagnosed - it was probably only the extremely severe and disruptive presentations, which are far more likely to be boys and more likely to have been picked up anyway because they end up in the criminal justice system.

The children of the 1990s (not to mention the 1980s and the 1970s) are adults now and if you had a perfect system where all (or almost all) the 5% were being diagnosed say between the ages of 5-7 then it would in theory be manageable to get through everyone. But most of us weren't - even in 2005 when I was struggling at college with what I look back were absolutely textbook ADHD symptoms and having endless meetings about it, the support offered was "Well you just need to find more self motivation and organisation". Then they withdrew me from the full assessment because it was obvious I hadn't done enough work to pass. ADHD wasn't even on anybody's radar (I don't blame anyone for this, but it is painful to think about what might have been possible had I understood my difficulties and/or been able to access medication then).

There have got to be over a million undiagnosed adults in the UK. Maybe it wouldn't cause everybody problems, but for a lot of us it does. And while there are probably also huge numbers of undiagnosed dyslexic people, autistic people, dyspraxic etc - those things don't have a promised medication which can make real difference to people.

A combination of better awareness making people recognise oh - this fits, I must have been one of those missed - and cuts to mental health services in general are just combining to make a huge bottleneck. I don't think ADHD is the only area this is happening in, but it is happening acutely with ADHD and I think these three factors (better awareness causing a catch-up effect, people more likely to seek diagnosis to get medication, NHS cutbacks) are probably the reason. There are waiting lists everywhere in Europe although not quite as bad as the NHS.

I am very grateful that I was diagnosed before the current backlogs - I feel for anyone who is caught in it.

The rhetoric that’s it’s people jumping on the bandwagon pisses me off.

I actually went in for ASD diagnosis, was rather surprised when after 2 4 hour assessments and a further 2 hour assessment I came away with an ADHD diagnosis. There has just been a huge uptick in understanding of how ADHD affects women.

The reason for this is because very recently, the diagnostic criteria for adhd was all the ways it presented in outwardly hyperactive little boys. It was thought for a time that adhd only affected males. They didn't even look at girls and women. My sister was assessed as a child and my mum asked if it could be adhd/asd - the doctor laughed at her. She is absolutely textbook for both and has been diagnosed at the age of 42.

The diagnostic criteria finally caught up and now people who have inattentive adhd can finally be get diagnosed (including little boys who also don't fit the stereotype but who are struggling.)

I'm pretty sure one of my sons has inattentive adhd, because i do and he's exactly like me. There's a little boy in his class who is outwardly hyperactive. They're both affected, but mine flies under the radar because he's not disruptive and he masks at school which means we have daily meltdowns when he gets home and the mask comes off. It's been much harder for the school to begin to spot my son's issues. The other child very rightly gets extra support. Mine needs it too but because the other boy fits the stereotype, they look at him and look at my son and feel it's not adhd and my son is fine.

My sister was assessed as a child and my mum asked if it could be adhd/asd

I say assessed, i mean she was taken to the doctor - being looked at for what we now know is ARFID.

@MaddenA I think your diagnosis is entirely your business, if you want to keep it private, and you are more comfortable that way, you should. If it is helpful for you to tell people, you would be surprised how accepting people are, or uninterested. You will probably find half the people tell you they think they have ND due to something they read on the internet.

Seriously, there is no judgement, I think neurodiversity is really well known now, and most people know friends and relatives with ND. No one will roll their eyes, I can’t imagine anyone will be anything but polite.

My good friend has been open and honest enough to say she is an alcoholic and everyone has been positive and polite or disinterested. There had been no judgements made by anyone. I think you will be ok if you decide to tell people. Or not. Whatever is best for you, I wish you lots of success with your journey and hope you feel confident to follow your best path xx

@MaddenA If you are in England, you (hopefully) do not need to wait 7 years. (Scotland, sorry; you’re screwed).

You can use the “Right to Choose” pathway and be seen in months. My friend got assessed this way recently, NHS pays, and then once you’re stable on medication (if you need medication), then the NHS starts writing the prescription.

Here is the link from ADHDAware on exactly how to use it (some links broken):
https://adhdaware.org.uk/what-is-adhd/getting-nhs-diagnosis/right-to-choose/

And here’s the page from the NHS about your right to choose where to go for your first appointment as an outpatient (your GP must refer you) - it’s #3 on the page:
https://www.gov.uk/government/publications/the-nhs-choice-framework/the-nhs-choice-framework-what-choices-are-available-to-me-in-the-nhs

Here is one place offering Right to Choose referrals (I don’t know if this place is any good; it’s just an example):
https://www.adhd-360.com/right-to-choose/

Don’t you end up with huge medication bills if your adhd diagnosis is private?