Our response to the Fonagy Review

Last week the government published its independent review into mental health, ADHD and autism.

599 pages.
Ten months.
Ten recommendations.
We are grateful for it.

Here is what it says and what we think.

What it found - five key things

1. Overdiagnosis is not happening at scale. It found no sign that people coming forward now are any less affected than those who came before. As the review puts it, people are seeking answers for very real problems and they are not the problem. (Despite what the press headlines say!)

2. The risk is an unregulated market. Rushed, fragmented or unregulated assessments are where misdiagnosis creeps in. Over half of NHS funded ADHD assessments are now carried out by private providers with little oversight of quality. Regulation for assessments is a must.

3. Waiting lists have broken. Over 560,000 people are waiting for an ADHD assessment. Over 254,000 for autism, more than nine in ten of them past the thirteen week guideline. More than seven in ten people get worse while they wait. The review says the system is not working and calls for radical reform.

4. Diagnosis has become the only door to help. No label, no support, so everybody queues for a label. And a diagnosis is not the end of it. Too many people reach the front of the queue and are still left without support afterwards.

5. The harm shows up in schools, workplaces and courtrooms. Children with ADHD are permanently excluded from school at around sixteen times the rate of their peers. Just over 3 in 10 working-age autistic adults are in work, against around 8 in 10 non-disabled people and three quarters of those out of work say they want a job. Around 8 in 10 children cautioned or sentenced have identified special educational needs. This is what happens downstream of proper earlier recognition and support.

What we support

Nine of the ten recommendations have our backing.

1. Prevent. Tackle what’s driving distress, with long term investment in youth and community organisations.
2. Support people by need rather than by label. No wrong front door, help while people wait and nobody taken off a list without being connected to real support.
3. Join services up. Assessment and support commissioned together, close to home, from childhood into adulthood.
4. Protect specialist care. Properly funded services for people with the most severe and complex needs, including crisis and inpatient care.
5. Regulate the assessment market. Every ADHD and autism assessment under the CQC, an end to direct to public advertising of NHS funded assessments.
6. Train the workforce properly. Not just the NHS. Health, education, social care and the voluntary sector, working in neighbourhood teams, with core competence in neurodevelopmental and mental health needs for every member of staff.
7. Use digital and AI safely. Build the data infrastructure and keep human, face to face care.
8. Count us. Regular national prevalence studies, broken down by age, sex, ethnicity and region so people are not hidden. Nobody has ever properly counted neurodivergent people in this country.
9. Tell the public. A national information campaign co-produced with lived experience, backed by a platform offering help without requiring a diagnosis. Give us a call!

Push Backs

We have three.
1. Mental health and neurodivergence are not the same.
Recommendation 10 asks government for a cross-government mental health strategy. This one concerns us most. Neurodevelopmental differences start early and are lifelong. Mental health conditions come and go, and often improve with treatment. Neurodivergence is not something to recover from. The two are connected but
fold us into a mental health strategy and we become a purely medical problem owned by a department with no reach over schools, workplaces or the justice system. (exactly where the review found the harm.) We’d like to see connection but not them merged.

2. What about us?
We support the focus on children and young people. But NHS England estimates around 7 in 10 people with ADHD in England are over 24. For autism it has no estimate at all and points to an adult survey from 2014. These are all-ages waiting lists and needs, full of adults who waited decades to be recognised. A children’s strategy alone will not reach them.

3. And the rest…
We want to acknowledge that Peter Fonagy himself is neurodivergent with dysgraphia - this report solely focuses on ADHD and Autism. In his words. “These conditions are part of a much wider landscape of neurodevelopmental differences that includes dysgraphia, speech and language disorders, dyslexia, dyspraxia, learning disability, tic disorders and others. We have not been able to do justice to all of them.” Only focusing on ADHD and Autism is not representative of society today and would like to see this further explored.

What we are asking for
A Minister for Neurodiversity, to coordinate a National Neurodiversity Strategy covering healthcare, justice, employment and education to implement many of the important findings in this report.