ADHD in the UK

#41

Thanks for the advice and encouragement, @Lustforlife! I’ve had therapy before and can definitely relate to the rest of the day being a washout, so I think that being able to book in blocks of 6 or so would be really helpful. I will try to remember to ask about that!!

Unfortunately getting any information at all out of the admin person at the particular clinic I’ve been referred to is like pulling teeth, but I accept that if anyone is going to be able to give me the information I’m looking for it’s probably them, so I will give it a shot…

Sometimes I feel like the entire referral system is some sort of cruel, catch-22 style test. Like they’ve designed it so that anyone who is actually able to navigate all the obstacles and get themself in front of a psychiatrist couldn’t possibly have ADHD! :upside_down_face:

Not that I want to add fuel to your fears, though @violet! It seems it definitely does vary from place to place, and actually I was apparently offered an appointment within about 3 months of my original referral - the only thing was, the offer was sent to my old address (I honestly had provided my new one!!) and so I never found about it. So, if you do get referred, I would advise you to phone up frequently (either your GP or the people who handle the referral if you are given contact details for them), and ask if there have been updates. I resisted doing this because I didn’t want to be a nuisance, but in hindsight it would have been much better to have been considered a nuisance than to have ended up waiting three times as long as I needed to!

Good luck with waking up to call your GP, fingers crossed yours is one of the good ones! :crossed_fingers:

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#42

I currently live in California USA but I’m English and will be returning to the UK this March after a ten year absence.

I received my ADHD diagnosis last year and have been on methylphenidate but I have no idea how easy it will be to “transfer” my diagnosis (since the NHS didn’t diagnose me) and how quickly I can get my methylphenidate refilled.

I’m not surprised to hear about long wait times and poor service in some areas. While extremely frustrating, please do bear in mind that it’s because of underfunding rather than the system itself being a failure. The current government would rather privatize everything and make money rather than lose money sustaining a public service.

The alternative would be like here in California, where yes you get prompt treatment but only if you can afford it. Despite being on minimum wage I pay more than $700 a month just for ACCESS to the healthcare here, and even then it’s only with ONE hospital chain. I still have copays and deductibles on top of the monthly premium. If I got into an accident and was taken to an out of network hospital then I would be stuck with tens of thousands of dollars in bills. Even within network my deductible (excess) is $10,000 per YEAR. And that’s on a company-sponsored healthcare plan!! I needed ear surgery last year and I maxed out my deductible, meaning I paid almost $20,000 that year alone.

Sorry for the looooong post, but having seen it from both sides I would take the NHS any day. It needs our support and more funding, and then it really would be the best system anywhere. <3

Good luck to all of us in getting the treatment we need! :slight_smile:

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#43

Hi Rachel.

I think there are quite a few of us UK based brains on here.

We need more awareness here, if for no other reason than to reduce the unacceptable waiting times for appointments and treatments.

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#44

Be persistent with your GP and make sure he/she takes ADHD seriously. This is so important. If they don’t take ADHD seriously-find a doctor who does.

My example of a doctor who didn’t take me or my ADHD seriously:

At the practice I go to the ‘main’ doctor told me to expect a wait of up to 18 months for my first appointment. Turns out the b’stard didn’t even start the process. I should have known when he said ‘Do you really want to bother at your age’? A new doctor at the practice, sadly not a replacement, got the ball rolling. In Surrey the wait is between 15 and 18 months for first assessment. 18 months for mine :rage: Add that the original 18 months that I thought was waiting time when in reality wasn’t thanks to my useless lazy doctor :rage: Because Surrey only has 2 people (according to the clinic), times between appointments are between 3 and 6 months which is crazy!

My advice to anybody in the UK is to stay on top of things. By that I mean don’t do what us Brains tend to always do and forget important things-keep track of time and chase clinics for your appointments. The people in Surrey are very helpful and supportive but also seriously under funded, consequently chronically under staffed so they are always overstretched time wise. Without being a pain in the ass, keep chasing…Good luck UK Brains.

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#45

Your experience sounds so frustrating!!! It feels so unfair that the doctors who don’t believe it’s a problem have this control over the process of getting a diagnosis!

There definitely should be more awareness of adult ADHD and GP’s should have more training on it, but also it would be great if we could just go straight to the specialists and not have to go through the GP’s first! It would just make things so much simpler as it would require less organisation and things to remember from us. :smiley:

Thanks for the reminder!

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#46

Ahh that is so annoying you never got the letter!! I’m just in the process of moving house too so I need to make sure the same thing won’t happen to me…

Thank you!! :blush:

Hope your appointments will go smoothly from now on too and you’ll get diagnosed soon!

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#47

Hiya UK Brains!!! Im Andy ive been recently diagnosed with ADHD.
Reading through your posts @violet its really strange how different parts of the country have such a difference in waiting times and referrals which is a disgrace . I live in Fareham just outside Portsmouth and the waiting time here is a max of 3 months and the doctors down here are really on the ball , then i read other posts that are 12-18month waits and doctors dismissing the condition completely!!!@ WTF is going on they cant have this amount of difference across the country its totally wrong and awfull treating people with our condition like this. I have an appointment with my M.P at the end of the month and im going to address my concerns to her about this issue and knowing she also is concerned with nhs waiting times .

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#48

Hi @Tiddlypops
Ive had one referral appointment so far and ive got another one booked my ones are 4wkly , but every case is different so it could be 2wkly or less. My appointment lasted for over an hour and we chatted about my life till now with other questions on feeling family and loads of things … it was really good to talk to someone and vent all my frustrations too and understood what i was saying.

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#49

Thanks for sharing your experience, I know it’s probably different everywhere but it’s good to have a ballpark idea :slight_smile: So did you receive your diagnosis at that first appointment then?

Glad to hear it went well and that you felt understood. Also I really, really appreciate you planning to discuss your concerns with your MP. Massive respect :raised_hands:

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#50

Hi @Tiddlypops
Im driving home at the min and have had really bad signal… i will write you a proper reply when im home abd answer your questions properly :sunglasses::+1:

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#51

Hi Andy I am in contact with my MP about the lack of funding for ADHD within Somerset, currently as an adult there is no way of getting diagnosed on the NHS, I was wondering If there would be a way of joining our ideas together and getting more people from a cross the UK to join with the same approach, in the hope that it could have a bigger impact.

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#52

Hi @Samuelburns,
Sounds like a good idea !! Who’s your MP in Somerset ?

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#53

HI @Tiddlypops
I phoned up an asked for a doctor to call me and they did that day i described what was going on in my head and didnt know what was going on with my moods and hyperhigh manic then i would be really low and felt i was getting to the point of not carrying on. I was booked into my G.P straight away and was asked quite a few questions and at the end my doctor said she i had adhd and possibly bipolar but it would have to be confirmed with a phychastic . But i started on meds straight away and it ongoing

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#54

David Warburton is my MP, I’ve been contacting him for several months now, I’m waiting for another email from him shortly.

So far I have had no luck in as far as getting any help from him, other than him returning emails.

I’ve also been considering contacting the local media to see if they would do a piece on it.

I think I may start a new topic on here, to see if anyone else would be interested in joining in.

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#55

Okay sounds like a plan , i will message back later im off out for the evening , so im guessing your mp hasnt brought this up in parliament yet. But i will discuss this with you over the next few days

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#56

Cool look forward to hearing from you

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#57

Hiya @Samuelburns
Ive had a bit of a meltdown this week and havent been around sorry mate, i havnt forgot and have done some work on it. What i think we need is a survey of adhd brains on age of getting diag from gp then to referal time for general figs and facts to put a case forward.

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#58

Hi
Once I finally got my first appointment it was a relief to feel like things were beginning to happen. It should have been a 90 minute ‘interview’. Should have been but I was late-by 45 minutes (genuinely not my fault this time).

I then was booked for a QB Test which was surprisingly much sooner that I expected. Did the test and it was back waiting for the follow up appointment. Got to the appointment and the guy had managed to lose my notes/file. I was told expect a 3 to 6 month wait for my next appointment. Almost 6 months later I finally have my appointment where I hope to get my much needed meds.

We need to campaign for bdtter access to fadter clinical help in the UK.

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#59

Ive posted a date for my meeting and other ideas
We can do.
Cheers
Andy

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#60

Just an update for anyone who’s interested, I went to see my GP yesterday and ended up in an argument with him… He was telling me that the signs of ADHD I have (lack of focus and organisational skills etc) were not signs of ADHD at all, that to have ADHD I would have had to have serious problems with hyperactivity since childhood… -___- He completely ignored me when I tried to explain that not everyone with ADHD is hyperactive. And any signs of ADHD I tried to tell him about, he would just reply with saying “that’s not a sign of ADHD”! :rage:

He also said all my problems are only classic signs of depression (yes, but I was depressed largely because of problems caused by my ADHD, like inability to follow through on big life goals… Also I’m feeling very happy and definitely not depressed at the moment but still have these “signs of depression”… And how could I have been depressed my whole life??! I’m even known as a very happy person, if I’m depressed there’s no hope for anyone… :smiley: )

I also saw a psychiatrist a few months back to see if I might have bipolar or borderline personality disorder (later I found out these often get misdiagnosed instead of ADHD!), but now because the psychiatrist didn’t think I would have ADHD my GP thinks he can’t refer me back… But the psychiatrist didn’t ask any questions that would have anything to do with ADHD, and I think he would have easily missed it anyway as he’s not specialised in diagnosing it…

I also think the GP thought I was trying to get drugs, he started asking about my drug and alcohol use and could also see from my files I have a history of drug use, but again that’s something that lots of people with ADHD do have a history with… Just another form of impulsivity isn’t it! (Besides, I live in London, if I wanted drugs there would be many much easier ways of getting them than going through a whole diagnostic process and trying to fake a diagnosis!! :rofl: )

So frustrating not to be taken seriously!!! Surely I know myself better than someone who only met me for a few minutes and clearly has no idea what ADHD is like…

I think at this point I need to look for private options, or try to get an appointment with a different GP… I was really looking forward to getting the diagnostic process rolling yesterday, but instead ended up in this dead end…

I’m definitely also interested in campaigning for better awareness and services in the UK… This is really ridiculous having to go to a doctor just to be told there’s nothing going on when I know there is…!

The GP I saw yesterday was very young too, early thirties I think, so it makes me really sad that even he clearly didn’t have proper training and understanding of ADHD!

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