ADHD Pathfinding

Thanks so much for sharing your experience. Even without a diagnosis, stories like yours show the real impact of gaps, wait times and refusals. We’re trying to capture the whole picture, that includes people stuck waiting or unable to access assessments at all.

Your ADHD assessment experience The information collected will be used to understand and describe the experiences of people seeking ADHD assessment. There is no identifying information collected with the form unless it is typed into...

ADHD care in the UK is a postcode lottery.

Different rules. Long waits. Services that don’t talk to each other.

We’re mapping all this, starting with lived experience.

If you’ve been through ADHD assessment, diagnosis or treatment, your story matters.

No personal info, just what happened.

Why ADHD Diagnoses Get Rejected And what needs to change

Even after years on the ADHD waiting list, your diagnosis can be rejected.
Sent back to the queue. No support. No reason.

Here’s how to fix it:

1. National standards
2. Regulation
3. Reciprocal recognition
4. Shared care framework
5. Review process (not redo)
6. Joined up data

ADHD Pathfinding Weeknote #4 8 August 2025 — Lining things up

Four weeks into @adhdpathfinding.org.uk and our vision is clear:

A society where ADHD is understood, supported, and never a barrier to thriving.

We’ve started mapping real ADHD care journeys in the UK.

Your story matters. Survey (no personal info): docs.google.com/forms/d/e/1F...

Weeknote:

Why ADHD Diagnoses Get Rejected And what needs to change

Why are some #ADHD diagnoses rejected by the NHS?
You move area. You change GP. You go through Right to Choose.
Suddenly, your diagnosis doesn’t count. No meds. No support. Sent to the back of the queue.
We wrote about why this happens — and what needs to change. medium.com/adhd-pathfin...

ADHD Pathfinding Weeknote #3 1 August 2025 — Laying the groundwork

Weeknote 3 from @adhdpathfinding.org.uk is up. We’ve been laying the groundwork.

- Drafting our vision, mission and values
- Shaping how we work
- Defining what we are (and what we’re not)
- Ramping up…

Just published my assessment journey which includes six months of being refused a Right to Choose referral 21cmindset.com/my-assessmen...

Pulling together stats for an internal reference doc for @adhdpathfinding.org.uk

Highlights 🧵

1/9

ADHD Pathfinding Weeknote #2 25 July 2025 — Getting clearer, going deeper

Friday has come around quickly. Here is our second @adhdpathfinding.org.uk weeknote medium.com/adhd-pathfin...

No one should have to deconstruct and decode a system designed to help them, especially when they’re already struggling.

But ADHD care in England is like a jigsaw puzzle without a picture and missing pieces.

We can do better.

This is what we’re looking into at @ADHDPathfinding.org.uk

550,000 people in England are waiting for an ADHD assessment.

But even after diagnosis, support isn’t guaranteed.

Move area, change GP or go Right to Choose/private… and you may be told to start over.

That’s not care. That’s chaos. And it happens all the time.

1/8

Sharon (@pixlz.com) is looking forward to being at the launch of ADHD NOW WHAT? on Saturday in Bristol, a book by Katie Friedman and Alex Campbell from Gold Mind Academy.

ADHD Pathfinding Weeknote #1: Jul 25 — Why We’re Here

Our first @adhdpathfinding.org.uk weeknote
medium.com/adhd-pathfin...

We need more of this kind of thing ✊🏻

So excited to be playing a small part in this. I was diagnosed with ADHD in 2022 (and suspected Autism too), and it’s been nothing short of life-saving for me and extended family. This is a multi-generational issue that needs well designed services to support people, once and for all 🙌🏻

Proud to be a critical friend on this! While on a full time contract, I don’t have brain capacity to help more now, but those are first steps. Whatever happens here on the NHS England side, might also lead to crucial extra funding for diagnostic services in devolved nations too via consequentials

This seems very hopeful.

The fact that ADHD diagnosis requires lots of remembering appointments and filling in forms is particularly unfortunate!

Thanks to @himal.bsky.social who has convened some of us to explore how we might make things better

Introducing ADHD Pathfinding Exploring more joined up and accessible ADHD care

ADHD support shouldn’t feel like a maze. But for many it does.

So we’re launching ADHD Pathfinding. A volunteer team with lived experience, exploring how to design more joined up and accessible pathways.

This is about change, not just awareness.

Read why we’re doing this and what comes next.