One week to go!

ADHD is lifelong, but CAMHS and adult neurodiversity services are run separately. Families can’t be assessed together, and transitions between child and adult care often break down. Disjointed care, stressful handoffs and missed support opportunities. 📅 Part of ADHD Awareness Month. Day 5 of 31

Constant novelty seeking, cycles of hyperfocus/burnout, restlessness, impulsivity… They’ve kept me bouncing around, leaving things unfinished. But they’ve also brought me an incredible mix of friends from my many different lives. As I found today at a lowkey birthday do. The best people ❤️

I quite literally have my medication review on Monday, this is one of 'those' where they decide to continue or not. I am nervous. Other GP surgeries around me have started refusing it. Of you're in the same boat, please read below:

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.

The ADHD Taskforce promised its final report this summer. Summer is over. No report. Every delay means more children waiting, adults cut off from treatment, families left managing bureaucracy instead of care. We can’t wait. So we’ve drafted what’s missing.

Adult neurodiversity funding hasn’t risen in 10+ years but ADHD referrals have surged with 550,000 people waiting in England. The result: years-long waits, growing backlogs, and costs shifting to crisis care instead of prevention. 📅 Part of ADHD Awareness Month. Day 4 of 31

I had a really nice work life balance. But now I have two jobs. So rebalancing.

Weeknote 12 is live! Highlights: - Tom Natt as our new Community Manager - Comms Lead role advertised - ADHD Taskforce report still missing, but we’ve published a benchmark - Practitioner survey in progress - Posting a systemic barrier a day for ADHD Awareness Month!

I can’t stop watching these.

ADHD screeners like ASRS and AQ10 miss women, adults, and those with co-occurring autism. People are turned away before they even reach assessment. 📅 Part of ADHD Awareness Month. Day 3 of 31

NICE rules say ADHD diagnosis requires current functional impairment. But symptoms ebb and flow. A child who is well supported at school may not get a diagnosis, even if their difficulties resurface later. No support until crisis. Higher costs later. 📅 Part of ADHD Awareness Month. Day 2 of 31

"When you’re trying to bring about significant change in any complex system, it’s impossible to know up front exactly what’s going to work, how the various risks are going to pan out or how the context is going to change."

Over four months since I moved into the flat. Six month tenancy coming up for renewal. I am renewing for another six. Stability and continuity are important right now. And I’m very settled.

When I was diagnosed I saw first hand how fragmented ADHD care is. That’s why I helped start @adhdpathfinding.org.uk Ministers keep saying “the Taskforce is dealing with it.” But where is the Taskforce? And what happens when it finally reports and disbands? Who is left?

ADHD is more than a symptom checklist. Narrow criteria miss women, adults, and those with co-occurring autism. The result? Missed diagnoses, delayed support, and higher long-term costs. 📅 Part of ADHD Awareness Month — Day 1 of 31

Nice monthlong holiday in Australia and New Zealand next January. Wedding in Sydney, see Melbourne friends again, maybe even put in a shift or two at the op shop. And escape the cold and dark.

From waiting lists to contracts: ADHD care is full of barriers. Starting tomorrow for ADHD Awareness Month, we’ll be sharing 31 posts in 31 days: one barrier each day, and what that means for patients and the NHS.

Next level challenge: taking on a contract which requires significant prep work while full time running something else. “Prep work” being an understatement. I’m ready for it. (Yes, I’ll be doing paid work again).

Big step for @adhdpathfinding.org.uk! I’ve been carrying the voice so far, weeknotes, blogs, posts etc but it’s time to share it. We’re looking for a Comms, Content & Engagement Lead (volunteer ~5 hours/week, lived experience essential).

I thought I’d put away everything from my travels with the emptying of the backpack and holdall. But no, turns out this toiletries bag was the last thing. Contained superglue from when I had to repair glasses after car accident and other mementos from the road, bits from random hotels… Empty now.

Big step for @adhdpathfinding.org.uk! I’ve been carrying the voice so far, weeknotes, blogs, posts etc but it’s time to share it. We’re looking for a Comms, Content & Engagement Lead (volunteer ~5 hours/week, lived experience essential).

A lot of neurodivergence care and support is really about helping people cope with the consequences of being forced into systems never built for them. This is really about equity and social justice. Caring for those already failed and making sure future generations don’t have to be. 1/2

Three months in and @ADHDPathfinding.org.uk is professionalising in all the best ways. Really proud of the roles we’re shaping and the community we’re building, along with the momentum to change the system. Good things coming. Read our latest weeknote.

Happy Friday! If you'd like to listen to a talk on considering intersectionality and compounding barriers when we think about accessibility, the recording is now on YouTube! Thank you @contentdesign.london @tomyoull.bsky.social @niacampbell.bsky.social @adrianortega.bsky.social for having me! 💖

What a week! Quite a good one actually. But I’m cold, first time since I moved into place. But not enough to turn on heating. So making porridge and getting in tub with Captain Quack.

Three months in and @ADHDPathfinding.org.uk is professionalising in all the best ways. Really proud of the roles we’re shaping and the community we’re building, along with the momentum to change the system. Good things coming. Read our latest weeknote.

Day 5: LIVE & ON-DEMAND for 24hrs Nonspeaking Autism Chronic Pain & Physical Disability Feeling Seen by a Machine (Autism and AI) Autism in Indonesia (Breaking Through The Stigma) Living in Two Worlds FREE Tix: buff.ly/hffciFq #autism #autistic #livedexperience #AFTI

Crashed hard this afternoon. Unusual for me. Got in bed. Napped for an hour. Time to take remedial steps: Order fish and chips. Watch something silly. Listening to my body.

I wrote to my MP about shared care, postcode lotteries and the lack of a joined up national strategy for ADHD. She raised it with the Minister for Care, who responded. We’ve now challenged for a further reply. If you’ve struggled or lost access, you can also write to your MP. We’ve made it easy.

Day 4: LIVE & ON-DEMAND for 24hrs Improving Intimacy in Neurodivergent Relationships Neurodivergent Love languages Autism and Perimenopause Neurodivergent Women in Business Advocacy Within Organisations FREE Tix: buff.ly/hffciFq #autism #autistic #livedexperience #AFTI

I haven’t talked about my air fryer much lately. Well it’s been two months and I’m still in love.

A lot of neurodivergence care and support is really about helping people cope with the consequences of being forced into systems never built for them. This is really about equity and social justice. Caring for those already failed and making sure future generations don’t have to be. 1/2

Day 3: LIVE & ON-DEMAND for 24hrs Masking Mental Health Concerns Power Relations in Therapy EMDR Therapy for Autistic Individuals What can we learn from Autistic Psychologists? Autism in Polyvagal Terms FREE Tix: buff.ly/hffciFq #autism #autistic #livedexperience #AFTI

So last week I was scanning through a referral letter in my GP’s system. Listed my medical history: Blood sugar, gout, HIV positive… WAIT. WHAT? Turns out admin keyed that in on 8 May after a check up. No one told me. (Spoiler: I am not HIV). 1/4

Day 2: LIVE & ON-DEMAND for 24hrs Peer Support & School Refusal Home Education Invisible Load of ND Parenting Understanding Echolalia The Power of Communicating Differently Masking Mental Health Concerns FREE Tix: buff.ly/I8JXDcr #autism #autistic #livedexperience #AFTI

So very pleased with this. Logging my blood pressure last few months. Blood pressure: normal ✅ Cholesterol: normal ✅ Uric acid: normal/no more gout flares ✅ Blood sugar: …working on it. Family history of type 2 diabetes.

Digging through wardrobe and experimenting. Popped out to shops with this double breasted waistcoat on. Forgot I had it.

The Summit is LIVE! Head over to our website to register and start watching sessions NOW! FREE Tickets: buff.ly/hffciFq #autism #autistic #livedexperience #AFTI

It will. Got a few good years yet for me to do what I’m doing. Good thing I didn’t buy the flat. I don’t really live in survival mode anymore but that doesn’t mean contingencies aren’t falling into place slowly. This only gets better after it gets really awful first. We’re not even close yet.

Earlier today. Rediscovering my love for red trousers.

The secret to a lot of big (and small) things in life, like purpose, where to live, what to do, is: Just pick something. Then do it. And stick with it. Which is exactly what ADHD makes so hard, the picking and the sticking. Until you get a handle on it.

Three weeks to the Royal Parks Half Marathon! Running for The National Autistic Society. Sun 12 Oct. It’s also around a week after my birthday, so I’ll be doing a thing for friends who want to hang out in Hyde Park. Weekend before is pub but don’t really drink anymore so telling people to… 👇💷💙

Someone left this in the lobby of my building. Old French advertising poster. Apparently used in Friends. I nabbed it, good frame. 70 x 100 cm. Now to decide what to put in it…

This year has been about healing and then facing things head on. Quelling the outdated nervous system “firmware” trying to protect me from being destroyed. Yes, it’s primitive. Each time I pushed back and showed it nothing bad was going to happen, I gained more control. Became stronger. 1/3

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

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!

ADHD assessments take months or years. When the diagnosis finally comes you can be left feeling empty… now what? Beyond medication, there aren’t clear next steps or support. Exploring what that means for my mum following her diagnosis. And more broadly, what does a diagnosis really mean?

What a week!

Really proud of how all this has come together. Not even 3 months! We’re at a bit of an inflection point. In all the best ways. Couldn’t ask for a better group of people (you know who you are). And the wider network of collaborators and friends we’ve been building too. Good things are coming.