Weeknote 17 is out. ADHD Taskforce Part 2 has landed. Good recommendations (waiting times, higher NHS priority) but no clear ownership and accountability. Also this week: - Working on visual map of ADHD landscape - Updated vision board live - First team fika happened today! Read it here.

The ADHD Taskforce report is finally out. We called what it needed to contain a month ago: national standards, fair shared care, real ownership. First look: some movement, still too many gaps. Reports don’t fix systems. Continuity does. Read the report here www.england.nhs.uk/publication/...

The ADHD Taskforce full report is expected to land today. We already covered what we expect to see in it and how we will benchmark.

@adhdpathfinding.org.uk planning with @sianmurrayhuynh.bsky.social, our service owner!

The final barrier from our ADHD Awareness Month campaign: lack of national ownership, accountability, and strategy. Without this, barriers stay stuck locally. Our blog post explains why national ownership is the only way to change the system. Read it here.

ADHD Awareness Month 2025 finished yesterday. We shared one systemic barrier a day. That’s 31 barriers over 31 days showing how ADHD care in England is fragmented, and what needs to change. We also published a post summarising what we learned and what’s next. 🧵 below are all 31 posts.

Weeknote #16 is out. We've wrapped up ADHD Awareness Month and published all 31 systemic barriers. The biggest? No national ownership or strategy for ADHD. This week: - Ellie's story on BBC News - New connections including NHS Digital Prevention - Community fika launching 7th Nov Read it here.

The last day of ADHD Awareness Month! We’ve shared one systemic barrier a day and saved the biggest till last: A lack of national ownership, accountability and strategy for ADHD. We’ve also published a post summarising the month’s findings. 📅 Part of ADHD Awareness Month. Day 31 of 31

Parents are often warned that ADHD meds are “controlled drugs” and “very strong.” That framing breeds fear instead of understanding. These medications are safe and effective when properly prescribed but stigma still shapes care decisions. 📅 Part of ADHD Awareness Month. Day 30 of 31

NHS ADHD cost models assume daily dosing at the same level for years. But many people use flexible or “as needed” dosing. That misunderstanding inflates budgets and limits access to treatment that fits real life. 📅 Part of ADHD Awareness Month. Day 29 of 31

We’ve published our WIP vision board. It maps how we turn our vision into services that help people now by putting users, needs, and strategy onto a single page. View it here: www.canva.com/design/DAG2g... Does it resonate? Share your feedback here or on [email protected]

The NHS doesn’t capture the real costs of untreated ADHD: from accidents to unemployment to mental health crises. Without data, ADHD looks expensive to treat but cheap to ignore. In reality the opposite is true. 📅 Part of ADHD Awareness Month. Day 28 of 31

Some areas fund ADHD Locally Commissioned Services, but the budgets are so small they can’t train staff or sustain delivery. These schemes look good on paper, but collapse in practice. Another postcode lottery in action. 📅 Part of ADHD Awareness Month. Day 27 of 31

ADHD is treated as a “specialist-only” condition. GPs manage diabetes, asthma, depression. But not ADHD. It’s one of the only long-term conditions left out of primary care. 📅 Part of ADHD Awareness Month. Day 26 of 31

Many GPs won’t accept Shared Care Agreements unless the prescriber is a psychiatrist, even when the clinician is a qualified specialist. That means patients with valid NHS diagnoses are denied GP prescriptions and have to pay £100-150/month privately. 📅 Part of ADHD Awareness Month. Day 25 of 31

Not that long ago, I wasn’t sure digital was still the right place for me. Let’s face it, it’s hard! Banging your head up against the same brick wall can feel futile. But this work is such a privilege, and doing hard things is easy with the right conditions. Mojo is back, more of this please 🙌🏻

Weeknote 15 is live! - @sianmurrayhuynh.bsky.social joins as Service Owner - Ellie Smith-Barratt @braveandbrilliant.bsky.social on BBC Radio Cumbria - Refining our vision and defining ADHD Pathfinding around a service to help navigate pathways

Most people don’t know moving house can void their Shared Care Agreement. They find out only when their new GP refuses to prescribe, leaving them abruptly without medication or support. It isn’t patient error, it’s system failure. 📅 Part of ADHD Awareness Month. Day 24 of 31

Moving house? Lose your Shared Care Agreement. Across England, SCAs don’t transfer between NHS Trusts. Even stable patients have to start again and be reasessed, re-titrate, or go private to stay on medication. It’s disruptive, unsafe, and avoidable. 📅 Part of ADHD Awareness Month. Day 23 of 31

ADHD meds are often classed as “Amber” prescribing guidance. That makes shared care optional for GPs. Many say no. It’s one reason why patients remain stuck between secondary care and Right to Choose providers, unable to get repeat prescriptions. 📅 Part of ADHD Awareness Month. Day 22 of 31

NICE says ADHD meds must be started by a “specialist” but doesn’t define who that is. The result? Inconsistent practice, bottlenecks, and patients waiting months while systems debate semantics. 📅 Part of ADHD Awareness Month. Day 21 of 31

Ellie Smith-Barratt will be on BBC Radio Cumbria at 11:40 today, talking ADHD awareness as an ambassador of ADHD UK. Don’t miss it. Listen on the link.

Some Right to Choose ADHD contracts incentivise speed: seven-week titration, minimal follow-up, quick discharge. Fast isn’t always safe. Medication adjustments need time, not tick-boxes. 📅 Part of ADHD Awareness Month. Day 20 of 31

If ADHD meds aren’t suitable, there’s often nothing else offered. No coaching, no ND-specific therapy, no alternative plan. Care ends where medication stops. That gap will only grow as people age and contraindications increase. 📅 Part of ADHD Awareness Month. Day 19 of 31

In some areas ICBs push clinicians to start adults on cheaper methylphenidate first, even when lisdexamfetamine may work better. That’s not NICE guidance, it’s cost driven and can lead to longer titration, poorer outcomes, and frustration for patients. 📅 Part of ADHD Awareness Month. Day 18 of 31

Weeknote 14 is here! This week was about resetting and reforming. @sianmurrayhuynh.bsky.social as Service Owner keeping us on course while @himal.bsky.social sets the direction. @jacattell.bsky.social on delivery, @powlander.bsky.social on comms/content. Surging ahead with renewed clarity.

Even after diagnosis, many can’t access ADHD medication. GPs say they’ll prescribe, but local rules, unclear shared-care policies, or ICB restrictions block it. On paper, access exists. In reality, people go without. 📅 Part of ADHD Awareness Month. Day 17 of 31

ADHD meds are treated like opioids. 28-day expiry. No repeats. No emergency refills. Rules meant to prevent misuse often do the opposite: stable patients fall off medication, relapse, and end up back in crisis care. 📅 Part of ADHD Awareness Month. Day 16 of 31

People diagnosed through Right to Choose or privately are often told their ADHD assessment “doesn’t count.” That means people are told to start over, waiting years again for the same answer. Wasteful, unfair, and deeply demoralising. 📅 Part of ADHD Awareness Month. Day 15 of 31

Clinicians with ADHD understand the system from both sides: patient and practitioner. But they’re almost never included in service design or contract discussions. Their insight could make services fairer, safer, and more user-centred. 📅 Part of ADHD Awareness Month. Day 14 of 31

If someone under a Right to Choose ADHD provider develops another health condition, they can fall through the cracks. RTC and NHS teams often can’t collaborate, even when both agree treatment is safe. The system divides care that should be joined up. 📅 Part of ADHD Awareness Month. Day 13 of 31

ADHD clinics often work in isolation. No cardiology or stroke specialists involved, even when prescribing safely depends on it. Multidisciplinary teams shouldn’t be optional: they’re what safe and joined-up care looks like. 📅 Part of ADHD Awareness Month. Day 12 of 31

GPs keep registers for asthma and severe mental illness, but not for ADHD. Without a register, people disappear from view once diagnosed. No way to track care, outcomes, or who’s being left behind. 📅 Part of ADHD Awareness Month. Day 11 of 31

Weeknote 13 is up! Our core team roles are taking shape and almost in place, our practitioner survey is landing soon, and NHS England has published new guidance on ADHD treatment. Finally, @himal.bsky.social is running the Royal Parks Half Marathon for The National Autistic Society on Sunday.

When someone moves house or goes private, their name often stays on NHS ADHD waiting lists. Sometimes on more than one. It makes lists look longer than they are, hides the real demand, and keeps everyone waiting longer. 📅 Part of ADHD Awareness Month. Day 10 of 31

ADHD waiting lists are often just spreadsheets. Literally. No severity rating. No link between Trusts. No shared database. A 21st century health system run on 1990s admin tools. Patients wait years while the data stays a mess. 📅 Part of ADHD Awareness Month. Day 9 of 31

Many ADHD referrals still don’t use the NHS electronic referral system (eRS). The system exists but isn’t required. That means missing data, lost referrals, and no clear picture of demand across regions. 📅 Part of ADHD Awareness Month. Day 8 of 31

ADHD referrals are rarely triaged by severity. Everyone just goes into one long queue. A person in crisis waits the same as someone stable. It’s unsafe and unfair, and it makes early help impossible. 📅 Part of ADHD Awareness Month. Day 7 of 31

Timely reflections on the politics behind the delayed ADHD Taskforce report and what’s really at stake. We’ve already set out what Part 2 must contain and how we’ll judge it when it lands.

ADHD and autism often overlap but services treat them as totally separate. Two referrals. Two assessments. Two costs. Two waiting lists. It’s inefficient and unfair. A combined pathway would reflect reality, cut duplication, and speed up support. 📅 Part of ADHD Awareness Month. Day 6 of 31

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

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

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!

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

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.

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

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.