UK BRAINS HELP NEEDED(MP Meeting 15/03)


#1

I need some help please as im going to see my MP about adhd and how waiting times and doctors diagnosing need a serious reform.
Myself and @Samuelburns are callabrorating on this.
What i need from uk brains is a time and dates from first seeing your gp to being diagnosed by gp, then the time it took to see a speicalist and most important is what county council or borough you live in. This will build a picture of what is going on. Ohh and age aswell please :grin:
Look forward from hearing from you :wink:


#2

I’m in Edinburgh, wet to see my GP back in August of last year. Got a referral to a psychiatrist the day after our meeting, once the GP had looked at my self-evaluation form and deemed it cause for further investigation.

GP initially told me the waiting list would be 3 months, but 3 months came and went, so I phoned up the clinic I’d been referred to, to see how much longer it would be.

They said the waiting list is about 8 months from referral… so it’s been 6 months now, and yet to be seen by a psychiatrist, despite telling my GP I was struggling and really needed some help.

I’m hoping I’ll be seen in 2 months time, and they don’t postpone on me again…

I know they’re terribly underfunded, but that information doesn’t really help me and my situation…
Not to mention the uncertainty of Brexit, and how that might affect my diagnosis and/or treatment as a Finnish national.


#3

TL;DR: Age: 28; Location: Edinburgh; I was initially referred in June 2018 and have an appointment with a psychiatrist scheduled for April 2019 (so 10 months wait) – but if it weren’t for repeated administrative errors (theirs not mine), it seems I might actually have had a much shorter wait!)

That’s weird, I’m also in Edinburgh and was initially referred in June last year… and I was offered an appointment in only 2 months (well, I don’t know how soon the actual date of that appointment was supposed to be, but I at least was sent a letter after 2 months asking me to phone up to arrange an appointment).

The catch was that they sent that letter to my old address, so I never received it and knew nothing about it until I phoned my GP for an update after having waited for 4 months. It turned out that because I hadn’t replied to the letter that I never received, I had been struck off the waiting list, obviously without my knowledge. My GP re-referred me right away when I called, and then…

…the exact same thing happened AGAIN. After my second referral they sent a letter to my old address AGAIN and struck me off the waiting list AGAIN when they inevitably didn’t hear back from me. Once again, I only found about this from my GP when it was already too late.

So I was referred for a third time, and this time I went to the clinic in person to make sure they definitely had the correct address on their system… it turned out they now had neither my old address nor my current address, but the address of another building on my current street! :woman_facepalming: (I also discovered that they’d had my mobile number and email address on file the whole time, so I really don’t know why they couldn’t have just checked up with me using one of those after I failed to reply to their letters, especially the second time!)

Anyway, after my 3rd referral I was quite pushy with phoning them up for updates and so this time I did manage to get an appointment scheduled, for about four months after the date of the 3rd referral. Then they suddenly moved it a month later without explanation, so assuming it doesn’t get moved again, in total I’ll have waited ~10 months from the date of my initital referral.


#4

Hi @Emilia,
Thankyou for the info this will help alot with my preperation :+1: thankyou Andy


#5

Hi @Tiddlypops,
Thankyou aswell for your info this will help alot!!
Thankyou Andy


#6

Hi Andy
Can’t remember what I’ve already told you, but in Somerset there is no funding for diagnosing ADHD in adults so you have to go private, also they will not diagnose young people with innatentive ADHD.
When is your meeting with your MP?


#7

Just emailed her and said i would get more info and bring this to her this week .


#8

I’ll try and keep it short and sweet:

July 2017 - First went to my gp, who referred me for an adult ADHD assessment.

April 2018 - After months of constant chasing, and being told I was on the waiting list, I emailed my CCG for information about my referral.

May 2018 - Heard back from the CCG, and found out I’d been referred to a service that didn’t exist. I went back to my gp and got them to refer me to an out of borough service that DOES exist.

July 2018 - Got a letter from a consultant, at last, asking me to make an appointment.

October 2018 - Finally was assessed and diagnosed.

So as you can see, a 15 month wait for me, which could have been only 5 months if the gp had referred me to the right place. Kinda frustrating.

Oh, and I’m in Stockport and 26. Eventually assessed in Warrington.


#9

Hi Andy
Hope you are feeling better now.

Your plan to raise awareness comes at a time when I’ve been having similar thoughts and was about to put a plan together (as best as us ADHDers can do planning).

How far have you got?

I think we need to send every MP in the UK a message, possibly with links to Russell Barkley’s YouTube videos. ADHD is basically ignored in the UK, apart from a small number of dedicated professionals which is simply not good enough. If those in power only realised that more attention to ADHD would greatly benefit the country in so many ways, including reducing the prison population. I seem to remember reading that an estimated 50% of the prison population could have undiagnosed ADHD. If true that is unforgivable of any government.


#10

Hiya @robm
Thankyou i am feeling better.
Ive just had a confirmation from my MP that i will be meeting her on the 15/03/19 she has asked for information to build a case which i have aswell started but this needs as you say massive collaboration on this. We have a short time to make this go viral and put pressure on the goverment to act. I think we need to setup a discord server to discuss things as it will prove alot easier and for others to join and collaborate.
Look forward to hearing from you you
Cheers Andy


#11

Hiya
Its moving forward meeting on the 15/08 with my MP :grin::grin::grin::grin:


#12

Hello, it was 15 years for me from first visit to the GP to finally getting diagnosed.

Lots of mental health problems over this time, a lot of which could have been reduced or eliminated completely with an earlier diagnosis. Finally formally assessed for ASD after an 18 month wait, result was borderline but suggestion of ADHD by them. Then ‘fast-tracked’ to an ADHD assessment as they are in the same department, further 6 month wait. Diagnosed January 2018 with severe ADHD at 48.

I believe 18 months to 2 years is the normal waiting time for an ADHD assessment in my area, Camden and Islington NHS Trust.

Good luck with your meeting!


#13

Hi Andy

What do you think about the possibility of one of us creating a Facebook page for the campaign and also an easily recognised name for it.

These were suggestions by fellow brains, and I think that they would make a big difference in gaining support.


#14

@Samuelburns Yeah good idea can one you do that then i will as im doing gaining more info and also going into parliaments archives on this which im actually finding out alot of stuff at the moment :wink:
So yeah Sam good plan also @robm has some plans aswell also im thinking Discord to have a general chat and thrash out ideas!!


#15

Thankyou Neil for the info … thankyou for taken the time
Cheers Andy


#16

Hi Rob thankyou and your collaboration would be great


#17

Im not that great with technology, I’m sure I can set up a Facebook page, but I’ve no idea what a discord is sorry.


#18

If you dont feel you can do it i can set it up later today and discord is like FB messenger but that can be sorted later :+1:


#19

I’ll try creating the Facebook group later I’m at work right now, I’ll let you know when it’s done.


#20

Andy

I want to help.

Like you, for a few months I’ve been having a rough time. I think it is to do with my diagnosis towards the end of the summer. You’re meeting your MP on March 15-I’m meeting my specialist, hopefully, finally getting some meds.

Back to helping…how many UK Brains on here are going to join us?

I know Jessica is not herself right now which is a shame because a short, UK biased message ftom her would help immensely. Maybe one of the forum mods can pass this message/request on to Jessica? I believe that would be extremely helpful.

I’m just rambling right now but as things start gaining momentum (that and a fast approaching deadline) I’m sure that I can be of some use.

Robm.