Campaigners planning legal action over autism and ADHD policy respond to deeply concerning Healthwatch York report

Campaigners who are planning legal action against the refusal of life-changing assessments for autism and ADHD have responded to a highly critical report which evidences the distress and hardship the policy has caused neurodivergent people.

York Disability Rights Forum (YDRF) has secured legal advice about launching a judicial review to challenge the decision by the Integrated Care Board (ICB) to refuse referrals for all adults in York and North Yorkshire except those facing 'immediate and life-threatening health or family breakdown issues'. 

A crowdfunding bid for the early stages of their legal challenge, has raised nearly eighty per cent of its £5000 target and has received countless messages of support. 

Today's Healthwatch York report [https://www.healthwatchyork.co.uk/wp-content/uploads/2023/08/Independent-evaluation-pilot-pathway.pdf] details first-hand the distressing impact of the policy.  

It quotes numerous people expressing an urgent need for assessment and diagnosis, with one describing their distress at not knowing where to turn for help, and another describing the harm to their mental health: "being rejected from an assessment because I'm not currently a risk to myself...made me want to be a risk to myself. It was rather triggering because I've previously had very volatile mental health with a history of self-harm and suicide attempts". 

Hilary Conroy, from York Disability Rights Forum, said: "The voices of those who are impacted by this pilot have been shared powerfully in this vital report; we urge people to read the experiences of those who are living with its consequences. 
"We're deeply disappointed to note that the Integrated Care Board failed to support Healthwatch by disclosing only select data. There is still no transparency about eligibility criteria and triaging."

"Once again we believe NHS leaders are making decisions behind closed doors without the input of the people affected. We urge them to listen to, and openly communicate with the people they are there to serve. Our community deserves better than this." 

The YDRF team still has 15 days to raise £1300 in order to move ahead with its challenge. You can support the crowdfunder here. 

The team say they have been overwhelmed by messages of support from people across the UK.   

Adding to the crowdfunder, Claire wrote about her own experience: "My ADHD diagnosis means I can begin to forgive myself for years of failing to thrive and failing to function. It means I can seek out ways of helping myself and learning to cope better with life. It means I'm not hopeless and despairing. It's saved my life. Assessment isn't a luxury, it's a right." 

Jo said they were diagnosed with ADHD through Right to Choose in their fifties. "I suddenly realised that my lifelong struggles were because I am neurodivergent, not because I am lazy, useless, disorganised, forgetful, over sensitive... The relief I felt was huge. At last, I am learning who I am, and I am okay."  

The campaign has been supported by the National Autistic Society which has expressed deep concern and has warned that this could be "a sign of what's to come" for neurodivergent people nationally, many of whom are already struggling to access the support they need.  

Under the pilot, all but those facing immediate and life-threatening health issues or family breakdown would be refused referral to be assessed for ADHD or autism. Initially due to end on June 27, the trial has since been extended for a further nine months, once again without consultation.   

YDRF has cautioned that the absence of autism and ADHD assessments was resulting in misdiagnosis of neurodivergent people. 

Autistic people have a nine times higher than average premature mortality rate, with suicide a principal cause. Adults with ADHD are five times more likely than their peers to have attempted suicide, rising to one in four women.