r/ADHDUK

I think we need to be able to talk about how we discuss benefits without it automatically being labelled as an attack. If we can't question the advice being given in a thread, we just end up handing ammunition to the exact people who want to portray us as playing the system.

In a now-locked thread, I responded to a post from someone who had been given zero points for the daily living part of PIP. I made clear that I was not judging the original poster: I do not know their circumstances.

When I replied, the comments I saw were largely from people saying they had been turned down too, then explaining what they did to get a different outcome. I found the overall direction of that discussion alarming. There is an important difference between helping someone describe genuine difficulties accurately and creating the impression that a refusal is something to overcome by learning how to present a claim.

For context, I’ve pushed back multiple times on social media against press coverage that portrays people with ADHD as exaggerating their difficulties or draining the benefits system. A thread that reads like “I was refused; here’s how to get around it” hands that coverage ammunition. We should be able to say so without being accused of “ableism”.

In my post, I said that I don’t think the vast majority of people with ADHD should be going anywhere near disability benefits. That is my view and I’m allowed to have it. It was not a verdict on the OP or on anyone else’s individual eligibility - I said the majority of people not all people. My point was that an ADHD diagnosis should not be treated as a reason to assume someone is entitled to PIP. Obviously, people’s circumstances differ, and some people with ADHD will have substantial difficulties or other conditions.

The moderators removed my comment for ableism. The thread was later locked, but more openly critical comments were still visible. I was just one of the first dissenting voices and my objection was removed rather than discussed.

Moderators can disagree with me. What I object to is treating concern about the direction of a benefits discussion as discrimination. If r/ADHDUK cannot distinguish between questioning advice in a thread and dismissing an individual’s difficulties, it makes it harder for the community to have an honest discussion - and easier for hostile commentators to define that discussion for us.

Moderators - you are not helping. Closing down discussion is just playing into bigots’ hands.

Genuine question, because I’m interested in the psychology behind this.

I have several colleagues working in NHS ADHD services who regularly see patients miss review appointments despite receiving multiple reminders beforehand and on the day.

Sometimes, when the patient is contacted, they’re available but haven’t attended because they forgot, lost track of time, or didn’t have something they needed for the appointment; for example, an up to date blood pressure reading.

Obviously, difficulty with organisation, prospective memory and time management can be part of ADHD itself, so there’s an irony here.

But it made me wonder:
If every review cost you £50 to £100 out of pocket; and you lost that money if you didn’t attend; would it change how likely you were to remember and prepare for it?

Or would ADHD still win regardless?
Interested to hear from people who have experienced both NHS and private ADHD care.

Basically the headline: wanted to reach out in this community to see if other people are dealing with a similar situation?

I was diagnosed privately with Problem Shared about 2.5 years ago now. After getting onto a stable medication, I began a long and arduous process of trying to get onto a Shared Care agreement. During this time I was paying out of pocket each month for private prescriptions.

This wrapped up at the end of July this year: I was finally able to discharge myself from Problem Shared, and refer myself to another NHS Trust who were able to get my prescriptions at the standard NHS rate.

Today I got this email from the Client Fees Team:

We are writing to inform you of an update regarding billing for self-pay medication sessions. 

Following a recent internal review, we identified that a number of clients who should have been self-paying for titration sessions and/or repeat prescriptions were not invoiced at the time of their appointments. We are now in the process of correcting this and are issuing invoices to collect any outstanding balances. 

This may include sessions dating back as far as 1 January 2025. 

This update applies to AXA-insured clients across all corporate schemes in the following situations: 

• If your AXA cover remained in place throughout your treatment with us, where charges have been included for issuing repeat prescriptions (these are in addition to the costs of the prescribed medication);

• If your AXA cover lapsed during titration and you continued your sessions on a self-pay basis; 

• If you are undergoing re-titration and your AXA cover lapsed after you had previously reached a stable dose or AXA don’t cover (repeat, or post stabilisation). 

Attached was an invoice for over a grand, dating back to Feb 2025.

I've put up with some real horseshit from Problem Shared over the years: the way I had to hound their useless medication team monthly to get my prescription filled on time, the way they sent it to the wrong pharmacy repeatedly, shortages, delays, and many, many hours on hold.

This is a step beyond all of that. This is insane. I can't pay that amount. Also, they admit in the email that it's their own fault: I wasn't invoiced!

This can't be legal. Is anyone else dealing with this?

Hi so i’ve been doing a lot a research over adhd and I feel like I have it. I’m currently doing a levels and it’s already killing me I did okay for GCSEs above grade requirements but below predictions. I feel like I won’t scrape but with a levels especially psychology and sociology.

Apparently the wait times are super long and I’m not sure if I should go through my GP so if anyone who has or is trying to get a diagnosis in the uk has any advice, that would be greatly appreciated.

There’s also a stigma of mental health conditions and concerns in my family and I don’t want to approach my mom with any of this before being certain in what I want to do and the steps. I don’t want this to end up in an argument which results in my relapsing and or not even getting an application sent.

Please boost if you can thanks!!