I thought I’d start a thread to see if there are any other UK Brains on this forum? There are some specific things about diagnosis and treatment in the UK with our NHS system etc that feel quite specific to those living here so I thought I’d create this and see who else it out there!
Hello Rachel and welcome, count me in. Neil.
I only joined today but it seems like there’s lots of us
Awaiting diagnosis in Scotland
Is that similar to “Anarchy in the U. K.”?
Yeh I’m from northan Ireland
Are you waiting on NHS? How are you finding the experience? It seems to be an extremely backed up and under funded service.
Hello! Good idea, am pursuing diagnosis and would appreciate any tips/info UK peeps further along can give
Went to see my GP in mid August when I first had my suspicions, and luckily she took me seriously (at a time when I wasn’t quite sure myself). She gave me the self-evaluation form to fill in, and next day I went to see her again and she said yeah based on my answers it seems likely I might have it, so she sent a referral to see a psychiatrist.
She said the waiting list was usually about 3 months (this is in Edinburgh), and this was about 2,5 months ago so I’m hoping it won’t be too long now before I get my appointment booked in…
Edit: forgot to mention, yeah this is through the NHS.
I’ve heard quite a few stories of people waiting up to like over a year for an appointment elsewhere in the UK, so although 3 months is an anguishing time to wait, it seems like that’s kind of from the faster side of things here
Will keep yous updated when I’ve had my appointment and such. Kinda nervous for that actually.
I’ve read about the evaluations and such and how you should bring in people who knew you as a child, such as your parents or family friends or older siblings or such, but everyone who knew me as a kid are back in Finland (where I’m from). Also school reports and such to know what teachers said, but I asked my mum to look them up at home and she said Finnish schools don’t really write comments on report cards, so that’s a dead-end, so I’m just kind of worried how I’m gonna have any evidence or signs of me showing these symptoms as a kid… my memory isn’t the greatest either…
Would be helpful to hear other peoples experiences of the process of getting diagnosed in the UK!
My waiting time was 14 month but there is a reason for that.
My area was in the process of setting up an ADHD adult assessment service when I was referred, so my GP referred me to that. But a year later, I chased it up, and it turned out the service was waaaay behind on its targets and wasn’t going to exist for a long time (it didn’t even have a named practitioner…), so I had to push to be referred out of area instead. After that it was a more reasonable waiting time.
The moral of the story is, chase things up!! I had to call my GP daily for a week AND email the local CCG to get answers about my referral. I should never have been referred to a non-existent service!
For the NHS 3 months wait is the shortest I have seen, most areas are 1 to 2 years, as above, some areas do not have any ADHD services at all.
One point to note, adult ADHD was first recognised by the NHS in 2008. If your first point of contact is a GP that trained before this date, they may not have any/much knowledge of adult symptoms unless it is a subject they have a specific interest in.
If the service is poor where you are you can request to be seen in another area, but you will need to do your research first as you can not be on more than one NHS waiting list for the same service. If you agree to the first referral option that is offered to you, the choice has been made.
The NHS Constitution gives people living in England the right to choose where to receive treatment.
You have the right to:
choose your GP surgery, unless there are reasonable grounds to refuse (for example, you live outside the area that the surgery covers)
make choices about your NHS care, and to receive information to support these choices
This also means you can choose the organisation that provides your NHS care when you’re referred for your first appointment with a consultant.
So if your GP recommends that you see a specialist, you can choose where and when to see them.
Another option is the South London and Maudsley (SLaM), the leading ADHD and ASD research hospital which are open to nationwide referrals, possibly even self-referrals too. As above, you cannot be on more than one waiting list at the same time for the same service.
It’s worth looking at this website if you don’t know it already and, if possible adding your support to their efforts aimed at improving ADHD services nationwide.
Can I just get diagnosed already?
I live in Somerset and am currently trying to get an ADHD assessment on the NHS but have been told they don’t do assessments in my area and they won’t fund out of area assessments, i am in contact with my local MP who is looking into the situation for me, and I will try applying for individual funding, which is used for things that aren’t normally funded on the NHS and they look at on a case by case basis but there is no guarantee that I will get it.
It really is a postcode lottery, huh?
You have a right to treatment, please see my post above yours.
If you have not already done this then consider contacting your CCG as well. They handle complaints about NHS services.
I did contact Somerset CCG and they were the people who told me that there was no funding available, my local MP is contacting them about this and I am waiting for him to let me know there response, I will put in a complaint if this doesn’t get me anywhere.
I am in my final year at college and falling seriously behind, I don’t think I will have time to wait any longer on the NHS and am concidering going private, even though I can’t really afford it.
That’s a rubbish situation. The CCGs are supposed to ensure the NHS constitution is supported, not ignored.
The only other suggestion I can make is for you to contact SLAM to see if they can help you or offer any advice. Their details are on the link in my post above.
Thanks again Neil I will try contacting SLAM today.
I’ve discovered that help with ADHD is really bad here in Somerset, I was on a waiting list for six months for an assessment only to find out the the clinic I was referred to don’t even do ADHD assessments, and that there isn’t anywhere in Somerset that does. The joke is, if I lived 30 minutes away from where I live now then I would have been referred straight away too a specialist ADHD clinic in Bristol.
I hope you find a solution soon, please keep us updated.
It’s so important that people get treated appropriately. It took over 10 years for me to get diagnosed, finally happened this year at 48. A situation that I would not like to see happen to anyone else.
It must have been a relief to finally get a diagnosis after all those years, I hope I don’t have to wait that long. I think realistically I’m going to have to find the money from somewhere and go private before I fail my Diploma, I just hope I find the answers I need or I’m back to feeling lazy selfish and a complete failure all over again.