Addressing ADHD assessments in the UK

46 comments

1. I’ll sign it! Can’t believe it takes that long!

   Edit: ok I’ve done it! Hope it helps x

2. This country is still behind the world in assuming ADHD is something you grow out of, it is not. Hence when children with ADHD hit adulthood they likely get shafted to needing to be reassessed before they can be given their medication again. The *average* wait at the moment is over 3 years. I’ve been waiting 2 and a half and my GP still can’t give me any updates.

3. Done! I waited 2 years for my diagnosis and the treatment has been life changing. I spoke to my doctor recently and she said the wait is more like 5 years now 💀 what a joke.

4. I’ve been waiting over 2 years for an ADHD assessment. I’ve pretty much given up. Unless I want to fork out £400 to go private, which I might do.

5. Spoke about this yesterday in the Ireland sub. You can barely get a diagnosis for ADHD, I know a mate that struggled for years before he got his diagnosis. ADHD just isn’t given any priority by the mental health system.

6. It is a complete mess, as tbh most mental health stuff in this country is. Like over the last year, reading into ADHD I’m more and more convinced that I probably have this. However, I have absolutely no idea how to even ask for assessment and frankly the multiple-year-waiting times really puts me off even trying. We need to be better at all of this.

7. Signed. It’s the same for ASD consultations. 18 months in my area and it can be several years for some. It’s a joke.

8. I’m looking at getting a Dyslexia and Dyspraxia diagnosis but the waiting list and cost is just crazy

9. I suspect I have it. It started with some silly memes and tiktoks that I could relate far too much, so I looked into it a bit more. I never considered before that I might have it because all my knowledge on it was based on films I guess, you immediately just think about hyperactive children, but it can present in different ways, especially in women. I think I developed anxiety as my way to cope with it and get things done but that’s hardly a healthy way to live. anyway, I’ve signed the petition.

10. I asked for, and actually received, an ADHD assessment on the NHS a while back. The diagnosis was that I had several ADHD traits, but these might also be caused by depression and anxiety, so I had to wait until these were resolved first. Unfortunately, the depression and panic disorder has persisted for 25 years, despite medication and therapy. If they were going to clear up, I think it would have happened by now.

11. The waiting list is even worse than what you say. Lots of people myself included are “Triaged” off it because we can drive and hold down a job.

    In my case my GP referee me but then 6 months later I was sent a letter which amounted to “we don’t think your that ill so we have taken you off our list”. At no point was I even consulted or offered the ability to appeal.

12. 31 Male – I considered I might have ADD and so looked into getting an assessment – then came across the horror tales of many years waiting like you mentioned.

    I was in a **VERY** lucky position where I had the funds to get a private assessment 1 month from calling / booking – that cost £845 right off the bat (seems to be around £1200 – £1400 in total after follow-up assessments – 3 months roughly until stable before you can transfer to NHS prescription via shared care act), which again, i’m very lucky to be able to afford.

    Got diagnosed mild / moderate inattentive ADD and been on meds for around 1 month.

    It’s. Life. Changing.

    Practically every aspect of my life has improved for the better and it’s helped reduce a ton of internal shame I think I was having because I was holding myself to high standards throughout life but not being able to do them / handle them.

    It’s a really shitty situation for those who can’t afford a private assessment, my heart goes out to them.

13. I’ve signed the petition, OP, because this is a cause that’s close to my heart.

    I have ADHD, and now realise how lucky I was to get an assessment after only eight months. My GP put me through right to choose, I think, so I ended up going private without having to pay for anything but my prescription for xenidate. It’s been a couple of years now, and I’m in a much better place than I was.

    Meanwhile, my 17yo kid has been trying to get a referral for over a year now. Being on the cusp of adulthood means that CAMHS didn’t want to touch him (not that ever been any use any way) but the regular service couldn’t accept him because he was too young. Last week he finally got a letter to say that he’s now on the list, but that the service are only now seeing people who were referred back in March 2020. So he probably won’t be assessed until he’s almost finished at uni, which is, to be frank, too fucking late. He wants to study law, he’s worked *really* fucking hard to overcome his behavioural obstacles to get into college, and to get a conditional offer from a good uni. He needs that help now, but I sure as shit can’t afford to take him private.

14. Ugh ADHD management in the NHS is awful. Can I please rant?!

    My husband waited more than a year to get an NHS assessment during his graduate medical course. He finally got assessed in 2019, not by the NHS, but by being invited to participate in an ADHD study taking place in the school. He finally got medicated, and while the meds helped when he was studying and in school, he began working last Aug and found it not as effective in his job. He contacted the GP last year to request a medication review… they said that local waiting times for an NHS ADHD med review are “indefinite,” and he should contact the psychiatrist who prescribed it for him. Unfortunately, he can’t, as he is no longer under the care of that psychiatrist (or even a student); he hasn’t even spoken with that psychiatrist since early 2021. Not like that guy was any good anyway — he only scheduled appts with my husband every 6-8 weeks, and instead of using it for medication management and checking in, he tried to turn each zoom meeting into a psychoanalysis session. It’s been 2 years since my husband got assessed, and 1 year since he last spoke with the psychiatrist, so we also don’t know how he’s been offered refills in perpetuity, without any checking in?

    I also waited more than a year to get an NHS ADHD assessment. My US psychiatrist wrote a letter detailing her diagnostic assessment, my diagnosis, my psych medical history, how long I’ve been on the meds for, and the meds and their dosages. GP in London put it through for referral; got rejected — said I didn’t meet the criteria for anxiety, clearly an administrative or human error. Then we moved to Suffolk, GP here referred me again. Waited; got ADHD paperwork, assessments, forms in the mail; returned them in person to ADHD team. Day of zoom assessment, got a call the guy was sick and not sure when he’s coming back, can they let me know via email or call to reschedule? 2 weeks later, still hadn’t heard back. Called, and was put through to the guy I was supposed to meet with — he said “oh sorry, I was out sick that day, would you still like an assessment? Next available time is in 2.5 weeks.” He bumbled through the assessment, asked if I turned my paperwork in, found it in a cabinet next him (yay so you didn’t look at it at all before our zoom), got annoyed when I (politely) asked about the equivalencies between the medicine offered and what I take in the US, didn’t even know the answer to my question, etc. Received the prescription 2 months later after more disorganization and miscommunication from the ADHD nurse to the GP and me… I then remembered I took it many years ago and found it didn’t work and also gave me severe insomnia (even at low doses). However, I gave it a try thinking maybe it’ll be different 10 years on. Nope, same problem. Now waiting for my follow up next week; hoping they’ll offer the immediate release and tell me to take it twice daily, but no idea what they’ll do.

    I’ve been flying back to the US to get refills every 5-8 months since 2019 — I’ve been lucky to find affordable airfare, my US psych sees me for free, and prescribes 90 day supplies at the highest dosage of immediate release adderall so I can break them in half for a 6 month supply. I also need the extended release daily and have been struggling because I need to ration what’s supposed to be a 90 day supply of it over 5-8 months. Flying back and forth to get meds wasn’t meant to be a long term solution, hence I wanted to get NHS ADHD care, especially if I’m paying a +£1600 health surcharge for my UK visa every 2.5 years. So ridiculous… NICE is worried about the abuse potential of extended release adderall, so only offer lisdexamfetamine as the extended release option. It also costs so much more — a 28 day supply of lisdex/Elvanse/Vyvanse costs the NHS £58.24, while a 90 day supply of generic Adderall XR in the US costs me only £84.55 (or £28.18 for 30) without insurance. I’d imagine the purchasing power of the NHS means they could get it far cheaper, too. My 90 day supply of Adderall IR is £54.70 (or £27.30 for a 6 month supply as I break it in half).

    I’m not a UK citizen, but I will show this to my husband and ask him to sign it. I hope it gets some traction! It really is a really dire and frustrating situation.

15. So mental when undiagnosed ADHD is likely a major cause of treatment-resistant depression in this country.

16. My NHS Dr was very supportive when I reached out to him a year ago. He offered to refer me to the NHS psychiatric service but cautioned me that the wait list was at least 2 years and more likely to be indefinite because the only person in my area who was qualified to diagnose had just retired.
    I am in the incredibly privileged position to be able to afford to go private, and I am thankful for that every single day. I’ve been diagnosed since summer and have recently started my medication.
    I can honestly say that my adhd diagnosis saved my life. Having access to medication, support, and academic accommodations is a huge help, and my own view of myself and my abilities has improved massively- I’ve finally been able to stop comparing myself to my neurotypical peers and treat myself with compassion for the first time in my life.
    If there’s a chance that someone else like me can have the same life-saving treatment because of my signature, it’s worth it.

17. My therapist strongly believes I have this. I’m almost 40. NHS doctor said it would be virtually impossible to get this officially diagnosed now because of my age. Thanks for letting me down yet again NHS. Utter waste of time.

18. I’ve been wondering for the last couple years if I have ADHD because it would explain a hell of a lot about my life. Especially over the last year, as I’ve seen so much relatable content about ADHD on TikTok.

    But the stigma around it, the wait times everyone seems to have to get an assessment, the inconsistent descriptions / definitions for it, coupled with my insecurities / anxieties and previous bad experiences discussing mental health issues with doctors, mean that I’m still reluctant to actually go talk to someone about it. The idea of being assessed, only to be told I don’t have it and there’s nothing wrong with me, is honestly terrifying. I feel like something has to be wrong with me given how much difficulty I’ve had / how much I’ve fucked up over the last ~20 years, so I’m terrified of being told “nothing’s wrong”, meaning I’d have to just be unusually dumb and or lazy.

    From being diagnosed with dyspraxia in primary and my parents being told they were never to tell me about it (I only found out years later, by accident), to struggling badly with my mental health in secondary and being told by the doctor that I was just an “attention seeker” and being a “hormonal teenager”, I find it really difficult to open up about my mental health, how I’m feeling / coping, etc with anyone. Especially with another doctor. But I also know I need to get help and finally figure out wtf’s wrong with me. I dunno.

    /rant I guess, this topic just stirred up a hell of a lot of feelings for me

19. I was at a crisis point a few months back.

    Someone suggested that I might *also* have ADHD. Suddenly so many things seemed to click.

    So I did some questionnaires. Then I contacted the GP.

    I said that I knew there was likely to be a **really** long waiting list and that if he told me the NHS accredited pathway, I could shell out for a private psychiatrist if they would fulfil a prescription that came out of it.

    The GP told me that this would be impossible. He also said “you’ve lived with it for x decades, what difference is a couple more years?”

    Yeah mate, I have suffered my whole life with this and I am contacting you because I am in crisis.

20. And let’s not forget that ADHD is diagnosed less in females compared to males, and females are more likely to be given a personality disorder diagnosis like BPD than an ADHD diagnosis.

21. Add it to the list.

    Mental health nurse here. In my area we have:
    1 year waiting list just to get allocated to a community nurse.
    3 year waiting list for psychology
    5 year waiting list for ADHD/Autism in adults assessments

    Hell it’s 2 weeks or more to get voluntary beds in our area.

    We’re at a 23% vacancy rate and 327% increase in referrals compared to prepandemic, but no increase in funding.

22. I signed. Ended up going private for mine through desperation, took ages to get the money but well worth it.

23. I was diagnosed with adhd as a child. Lived my entire life without medicstion as my parents didn’t believe it was a real. I’m 32 and just starting to realise the impact this has had in my life. I’d like to get a diagnosed again and try medication. Wheres the best place to start?

24. Wow! This has blown my mind. I was assessed and diagnosed ridiculously quickly.

    I had 2 – 2 hour long discussions with my doctor and was then referred to an ADHD clinic. I had to fill out a huge amount of questions about my entire life and then have a 3 hour meeting with the doctor there.

    From there, I was put on Concerta 18mg and checked on over the next few weeks. I eventually went up to 54mg and it was too much. I had the worst mood swings. I sat and cried at The Office, because I found the joke funny??

    Since then, I’ve asked for further support, such as CBT and just to feel like I’m actually being helped. I was sent an email asking me to attend online sessions. Great! Nope…the email listed 20 other peoples emails and we were all going to sit on a call (lasting 1 hour) and be told how we can live with it. So now, my private information was sent to other people. I didn’t attend.

    I have to email them each time my meds are low. At first, it was great. They’d respond and I’d pick them up. Now, I have to REMEMBER to email them. REMEMBER they haven’t responded. REMEMBER to contact them again and REMEMBER to chase them. It’s a joke.

    I do feel like I’ve been given my meds and that’s job done. I still don’t really know for sure how well they work. I’ve sometimes forgotten to take them and it does make work more difficult, but how much are they actually doing? It’s incredibly poor.

    TLDR: Quick diagnosis, given meds and no real support.

25. My husband has ADHD. It took a year for his assessment (around 4 years ago) and then another year for him to get approved for medication, but I see now we’re actually one of the lucky ones. The main problem we found was that there was a lot of chasing up that needed to be doing, and thankfully I was able to help with this, but I appreciate not everyone has someone to help with the practical bits. An extra hurdle or barrier for someone who has ADHD might turn them away at from seeking help altogether.

    I will say though, to anyone reading this, if you’re on a waiting list or thinking about getting help, every single part of his life (and mine) is better since he started medication. It’s truly been life-changing. If you can, please hang on in there.

26. I am diagnosed in another EU country (came here before brexit), yet I’m still made to wait in a multi year queue. Forced to pay for a private diagnosis, they won’t even recognise that either. It really sucks, especially with work now being almost exclusively done from home

27. Ugh, I feel this. I had to go private as I couldn’t 18 months for it. Took all of my savings (another ADHD tax). I got the medication I need at least and I managed to get a shared care plan with my GP which can be really hard for some people. “Luckily” when my GP saw the report and went back over my medical history, they were staggered it hadn’t been picked up already. However, most people are not so lucky and a GP can just refuse to treat you for ADHD.

    the whole state of how we look after people with ADHD and ASD is appalling and a source of national shame, for those unfortunate enough to know. Some progress has been made with ASD but ADHD is just fucked. No one cares and you’ll be lucky not to have it viewed as a personal failing, at work.

    Just to clarify, they used to think it got better with age. It doesnt, we just become easier for other people to deal with. Pretty much all ADHD symptoms are how we effect other people/society. We are fundamentally not programmed to deal with this world, as it is.

    As an adult, ADHD is so much worse than when you’re younger. Now I have responsibilities, a job etc.

    To really hammer home OPs point: 9/10 child suicides are attributed to ADHD, we make up 1/3 of the prison population 1/4 of all people with a substance abuse disorder and yet we make up around 5% of the population. We are also 100x more likely to be excluded from school. The list goes on and on.

    Its mad that it gets ignored.

28. Signed. Had to go private for ADHD and ASD assessment.

    Regardless of the outcome, that was £1400 for two interviews before additional considerations. £1400 spent when it should have been “free at point of service”…

29. Signed. I’ve struggled with ADHD my whole life, and a lot of the comments in this thread really hit home with me. Things need to change.

30. I had mine two weeks ago. Waited 13 months. Got the diagnosis

31. I just had a occupational health telephone appointment and they said I need an ADHD assessment but don’t know what to suggest because the wait lists are so long. The lady I spoke to said she feels bad for me, haha.

32. Waited 12 months for a diagnosis.

    They sent me forms for other people to give witness statements about my personality months in advance and i forgot, found out at 11pm the night before the appointment when i logged in.

    Wasnt prepared on what to cover. Was told not to ramble and just answer the questions.

    Hard to remember childhood which made it difficult.

    Because i have some coping mechanisms to not end up a complete failure and out of work I was told I was on the line and wont be diagnosed.

    Half a year later im i got into a relationship with a psychology teacher who is like ‘oh yeah you definitely have it’ as she has to put up with all my quirks and behaviour.

    Sucks.

33. Thanks for posting this, I have been trying to get an ADHD assessment on the NHS fir a shirt time.

    After speaking numerous times to my dismissive GP they finally agreed to refer me but gave me no information where to and when.

    After realizing the waiting list is so long, I searched around and got a private appointment for £675, which is a lot but I consider it minuscule to solving my problems.

    Thank you. Thank you so much. This post gave me the push I needed.

34. Signed!

    I got diagnosed in 30s at the tail end of last year. I got lucky with this even going private!

    My GP I’ve since found out has an interest in ADHD esp in women and girls as he knew that it was so under diagnosed. From that alone I know that Ive been lucky.

    When I was referred on the NHS the waiting list in my area was at least 3yrs. The only reason that I ended up going private was because I have a health cash plan though work and that covered the majority of the cost.

    I also was relatively lucky with them as the wait for a private diagnostic appoiment was only 3 months at that stage. Now they are currently booking appointments for the end of the year so it’s a 10month wait! Additionally so places that I called when looking for somewhere near me aren’t even considering any adult appointments!

    I am also really lucky that the titration was quick and that I ended up on meds that suited me first time round.

    The first time I took them it was this sense of calm that I’ve never had before. The constant noise Iin my head was quiet!

    The last 3months have been life changing for me, and there really needs to be something better than this!

35. Signed, your post hit home for me very hard. I have wanted to try and get assessed but the doctor’s just said “there’s a very long waiting list” to which I said was fine, but they never put me on the list.

    I grew up unable to concentrate and pay attention properly in school, because of this I was called stupid by my teachers, my step father. I developed a lot of insecurity about my intelligence due to this and self esteem issues. I’ve struggled all my life feeling like I wasn’t as good as everyone else because I can’t even articulate my points in debates properly because my brain doesn’t want to fetch the word, or I’ll just get distracted.
    I’ve suffered with many of the things you’ve listed, depression, anxiety, substance abuse, unemployment etc.

    Maybe the doctor’s thought I just wanted access to drugs to abuse, but I just want to feel like a normal person ffs.

36. i just don’t understand how people are so automatically pro-adhd meds without talking about potential risks.

    when i look up adhd meds, it literally says more serious potential side effects are stroke, sudden death etc. as they are stimulant drugs.
    and of course it’s not recommended for people with cardiac problems.

    also generally apparently not recommended for long-term use.

    so are there any other options for people who don’t want to take meds? or do they just…resign themselves to suffering with this sh*tty disorder and no treatment?
    also, what about when the people who *do* take it, have to stop because it’s officially become “long-term” which is not recommended? just go back to struggling with adhd?

37. I got diagnosed 15 years ago in 2007, even then the wait time was really high. My mum went private with me and I was diagnosed in less than a year*.

    The problem extends far beyond diagnosis. How ADHD is viewed and accommodated for in Education is appalling.

    When starting secondary school they put me in the lowest set (subjects were divided by sets based on academic performance) without giving me a proper aptitude test. This eventually affected my GCSE grades because my math teacher didn’t teach us above a mid B because he didn’t think we were capable of anything more.

    During my A-levels I had to fight tooth and nail to get the support and exam considerations I needed. The tests and guidance that SEN (Special Educational Needs) departments use are borderline offensive. They assume that all students with a condition need exactly the same support, despite decades of research showing the opposite.

    This year I had my DBS application rejected (Disability Benefits) despite having had them for more than a decade.

    The support given for people with ADHD, and disabilities in general, is utterly shameful. A lot needs to be done. People with ADHD or suspected to, aren’t the only ones having these issues, but given how prevalent the condition is, it gets the most attention.

    * Was re-diagnosed by accident during a clinical study looking at the effects of a new ADHD medication. Had us sit in an MRI machine for hours whilst they had us do various tasks. Afterwards, they said they hadn’t seen the brain scans they were expecting from an ADHD patient. Ran another scan and that led to me being re-diagnosed with ADD, a sub type of ADHD.

38. I had an assessment done for something else where they found “weakness in executive memory”, which is a hallmark for ADHD, and would explain the bad school behaviour, the underachieving, and the endless procrastination. It was done at Birmingham’s Queen Elizabeth Hospital in their neurological centre, so is about as bone fide as you can get proof wise.

    My GP still acts like I’m some sort of drug seeker or neurotic when I ask for an assessment (im a woman, so that’s part of the bias). I’ve never had one. In terms of concentration and attention, a GP even joked that they’re not allowed to prescribe cocaine anymore. (I wasn’t offended by that because it was 100% a joke and wasn’t the same doctor I mentioned in the first sentence, so don’t be offended on my behalf there because it would just mean you weren’t there to understand the tone of the whole appointment. They basically meant there’s no magic pill to lift foggy thinking and if there was she’d prescribe it to herself and me….I’m rambling right now, probably part of that executive function).

    My point: I want an assessment for ADHD specifically but I don’t know how to get one.

39. To be clear, I agree with the OP about improvements in UK assessment of ADHD.

    (Ref. I am diagnosed ADHD as are many members of my family)

    This might be semantics, but ADHD is not a treatable condition. The collection of behaviors that constitute an ADHD diagnosis can be managed through medication and counseling/therapy. At this point in time the underlying physiology that results in these behaviours is not typically treatable.

    One does not “have” ADHD, one is diagnosed as ADHD.

    I feel being clear on the above distinction is very important to folks, especially those in government decision making positions or work, or schools, who struggle to understand folks who live with an ADHD defined condition and those who have yet to have the condition identified.

    Depending on the physiology that drives that set of behaviors, medication can help us function within the current expectations of society. Counseling in concepts like mindfulness or CBT training through therapy can help us actively manage the behaviors. Help in all these areas is very much appreciated and in nearly all cases life changing, especially for children. However, the result temporarily helps us become less of a problem for others, but it’s doesn’t make us go away; dealing with us in a sustainable manner is a much broader conversation

40. One good bit of advice I was given when waiting for my NHS assessment (diagnosed at 41 but blindingly obvious beforehand) was to ask the clinic to put you on the Cancellation List. If anyone backs out of their appointment at the last minute you’ll get called in – might mean that you have to be available at an hours notice but better than waiting another year.
    Sadly, I had severe side-effects on all of the medication provided (Methylphenidate/Atomoxetine/Lisdexamphetamine) so didn’t end up taking them. I work as Specialist Support in a Further Education college and lots of the students struggle with their medication due to side-effects. One particular problem is that for a lot of people (me included), the traits of ADHD that can be most disabling can also be the traits that others love. I am bouncy, quick-witted and generally fun to be around – just don’t ask me to do paperwork! A lot of people with ADHD will not want to trade in their likeable charms to a quietened, but more effective and responsible persona.

41. I am marked as “needing emergency care” but have still been told it’s probably a 2 year wait.

    Also they lost my paperwork for 4+ months and then the doctor was on holiday when they realised the issue so they had to restart everything so I have no idea where I am on that 2 year wait.

42. Based on the number of incredibly long comments on this post, I’m happy to accept that as evidence of far too much untreated ADHD in these parts.

43. Have had to go private, thankfully found a decent place that wasn’t too expensive, got my diagnosis and started meds within a month.

    Now talking to my GP about moving over my prescriptions to the NHS which the private service I used does as part of a shared care agreement, so I don’t have to shell out £1000s for meds each year. My GP has the fucking audacity to go on about how they don’t trust private diagnosis (even though the private service does NHS work in a different part of the UK) and doesn’t know if they can take on my prescription because they don’t want to be liable because they are controlled drugs.

    The fact the NHS is such a mess is only compounded by how they deal with ADHD meds, they treat them like they are the most dangerous substances known to man, which is ironic because the same NHS has been handing out antidepressants and antipsychotic meds like they are fucking skittles for decades, while failing to inform patients about the risks.

44. Unfortunately these waiting times for ADHD is mirrored for many other mental health conditions. It’s often not even funding that’s the problem. It’s bad policy. Patients are quite simply only diagnosed properly after they have started medication and it proves to alleviate symptoms.

    Currently the system puts full emphasis on specialist clinicians sitting down and having a chat with the patient. This is something GPs can be taught to do for most adults completely freeing up the clinics to focus on people more complex needs. They do it for depression. It’s really not that much of a stretch for them to provide some form of care for other conditions instead of making patients wait five years. It’s not like mental health gets better during that time. Typically it gets worse.

45. >with some waiting up to 5 years

    Insane. That’s enough time to fail your A levels AND your degree. The damage that five year wait can do to your mental health and your education or career is catastrophic and will affect you for the rest of your life.

46. A LOT of people, myself included are having to retrospectively re-contextualise their past due to just figuring out what’s been wrong with them this whole time.

    The pandemic has allowed a lot of people to reflect and understand themselves on deeper levels.

    The ADHD iceberg helps people understand what it actually is, a lot of people still think it’s just not being able to focus.

    https://timkiverfoundation.org.uk/2021/02/04/adhd-iceberg-adhd-signs/