ADHD Diagnosis Delays, Shared Care Refusals – What Has Really Changed?
One year ago, I sat on the red sofa of BBC One’s Breakfast Show, speaking openly about the crisis facing undiagnosed adults with ADHD in the UK.
I shared the stark reality of waiting lists, overwhelmed services, and the emotional toll on people living for years without answers. I also held hope that raising awareness nationally would spark real change.
Now, 12 months on, I’ve been reflecting on what’s actually improved, and the truth is, for the average undiagnosed ADHD adult in the UK, nothing has changed. In fact, things have arguably got worse.
The Illusion of Progress
Yes, on the surface, a lot looks like progress:
NHS England launched a national ADHD Taskforce
Official waiting list data was published for the first time
A new data improvement plan and digital tools were introduced
Guidance has been issued encouraging support without a formal diagnosis
Some regions have piloted improved care pathways
But for the person stuck on a years-long waiting list, unable to function at work, doubting their experience, and suffering in silence... none of this is visible. None of this provides relief.
The waiting lists are still growing. The services are still underfunded. And the gap between need and access is still terrifying.
Now, It’s Getting Worse: Shared Care Breakdown
If you’re someone who scraped together the money for a private ADHD diagnosis, expecting that your GP would take over prescribing through a shared care agreement, the situation has become even more hostile.
Over the past year:
GPs across the country began withdrawing from shared care agreements for ADHD medication as part of industrial action
This meant thousands of people with a formal diagnosis – often diagnosed privately because NHS waits were too long – were suddenly left without access to medication
Many now face monthly bills of £100–£150+ just to get the medication they need to function at work, raise a family, and survive daily life
Even though the industrial action ended earlier this year, shared care support remains patchy, inconsistent, and full of hurdles
The result? People are Struggling. Burning out. Giving up.
The system is actively making it harder for people with ADHD to access basic, medically necessary care.
I’m Angry And You Should Be Too
I’m angry that, despite meetings, task forces, headlines, data dashboards, and digital tools, we’ve still left people behind.
I’m angry that those seeking help are still met with suspicion, red tape, or silence.
I’m angry that ADHD, a condition that is manageable with the right support, is being treated as an afterthought by a system that doesn’t understand urgency or nuance.
I work with ADHD adults every day. I see their brilliance, their potential, and their struggle to get support that should be simple. This isn’t a lack of personal responsibility. This is a systemic failure.
Where Do We Go From Here?
We need:
An actionable national ADHD strategy, backed by funding, timelines, and accountability - not just words
Universal, equitable access to shared care agreements and right to choose across all regions - this should not be a postcode lottery
Short-term interventions to support people before and after a formal diagnosis
Recognition that the current system isn’t working and people are suffering in the gap
Until then, it’s up to us – practitioners, advocates, allies – to keep the pressure on. To share the stories. To say what others won’t.
If this resonates with you – whether you’re someone with ADHD, a parent, a professional, or a healthcare worker, I’d love to hear your experiences. What have you seen over the past 12 months?
Let’s keep this conversation alive. People are listening, but they need to understand that this is not just about data or dashboards. It’s about lives.
I’m Matthew, Certified ADHD coach, chartered engineer, and founder of ADHD Remapped.
Diagnosed with ADHD at age 39, I understand the journey you have been on and I am here to offer you support.