After writing about ADHD shared care and prescribing gaps, we’ve put together a ready to use template to write to your MP. MPs respond to constituents. ICBs respond to pressure. Each message helps show these barriers aren’t isolated, they’re systemic. This is about fixing what should already work.

Weeknote 10 is live! - Our first in-person workshop - Clarifying purpose and vision - Talking roles and governance - New post on the ADHD prescribing gap - Being featured in the @publicdigital.bsky.social newsletter And more!

This post is Part 3 of our trilogy on ADHD access: 1. Why diagnoses get rejected medium.com/adhd-pathfin... 2. Why medication is so tightly controlled medium.com/adhd-pathfin... 3. The prescribing gap medium.com/adhd-pathfin... 8/8

New @adhdpathfinding.org.uk piece on the prescribing gap. Why GPs say yes, but patients still hear no. On paper prescribing support looks universal. In practice many people still can’t get medication. 1/8

It's a pleasure to be hosting ADHD Pathfinding at Public Digital HQ today, for their first ever in-person meeting. Read more about their work on Medium medium.com/adhd-pathfin...

This team was brilliant today. The time they gave to explain their mission and personal stories was generous, and incredibly insightful. Go @adhdpathfinding.org.uk 🙌🏻🙌🏻🙌🏻

What an absolutely amazing day! Thanks again to @daverog.bsky.social and @publicdigital.bsky.social! Connecting, workshopping, showing, telling… we’ll share more soon! For now, our latest weeknote: medium.com/adhd-pathfin...

Looking forward to seeing @pixlz.com, @zzgavin.bsky.social and others soon for our first in-person @adhdpathfinding.org.uk meet and workshop. Kindly hosted by @publicdigital.bsky.social, thanks @daverog.bsky.social! We’ll also be doing a show and tell and QA for PD. A lot has happened in 2 months!

We're looking forward to having you all at @publicdigital.bsky.social and having an opportunity to support your mission 🙌🏻

This Friday will be our first in-person meet as @adhdpathfinding.org.uk! Huge thanks to @daverog.bsky.social and @publicdigital.bsky.social for hosting 🙌 We’ll be running a strategy workshop and doing a show and tell with the PD team. Learning and working in the open, shaped by lived experience 💙

Access to ADHD medication in the UK is fragile: 28-day scripts, no repeat dispensing and long waits. For many, it feels like being treated as a risk, not a patient. Does it really need to be this strict? 1/8

Weeknote #8: A “who’s who” of the team, how we’re tackling survey insights, our first collaborative blog post, organising better, and getting ready for our first real life meet. This week put together by @jacattell.bsky.social

Getting ADHD medication in the UK is challenging: red tape, waits and gaps that leave people stranded. Sweden’s data shows treatment cuts suicide, accidents and substance misuse. Lives saved, risks reduced. Written with input from clinicians. Do UK rules protect people, or create more harm?

I know so many people with stories to share about the ADHD assessment experience, if you could take a few minutes to fill this out we'd really appreciate it. And watch this space as @adhdpathfinding.org.uk will be sharing insights, findings and fighting for change too 🙌🏻

Weeknote #7 from ADHD Pathfinding. A shorter, quieter week with a bank holiday in the UK. Read the full weeknote: medium.com/adhd-pathfin... #ADHD #Neurodiversity #MentalHealth #UserCentredDesign #PolicyChange #ADHDPathfinding #NHS

Have you had to go through more than one ADHD assessment? How long did you wait from referral to diagnosis? What’s been your experience with shared care? We’re mapping these journeys to push for change. Share your story through our survey.

The Minister for Care has responded on ADHD (via my MP). Acknowledging rising demand but still nothing on fragmented ICBs, postcode lotteries, shared care cliff edges, and ADHD being invisible in the NHS 10-Year Plan. We’ve published the letter in full plus our response. 1/2

Weeknote #6 is out! We’ve been reframing ADHD Pathfinding as an “insights engine”, turning lived experience into systemic change while convening experts to help: Stories → Insights → Action Lots more going on this week, read here.

This lot are bloody lovely and masses of fun to work with, what a privilege 🥰

If there was a national, curated hub for ADHD resources (clear, vetted, accessible) what would you want on it? What guidance do you wish you’d had? Are there great examples you’ve already found that deserve to be shared more widely? This is something we’re exploring on @adhdpathfinding.org.uk

“They weren’t that receptive. Then they told me that it didn’t matter if I waited a few yesrs [sic] as I had waited 40 already.” Survey responses like that really hit home but also remind us of why we’re doing this. And why it matters so much. Please share: docs.google.com/forms/d/e/1F...

This week we launched our ADHD assessment survey. The stories coming in are hard to read. Frustration, exhaustion, resilience. Weeknote #5 is about the stories behind the numbers. Read and share your own. docs.google.com/forms/d/e/1F... medium.com/adhd-pathfin...

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.

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

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 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...

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

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.

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

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.