CAMPAIGNERS in York say they are planning legal action against the regional NHS care board for its refusal to refer adults for life-changing assessments for autism and ADHD.

The York Disability Rights Forum (YDRF) says it is launching a crowdfunding bid to pay for a judicial review over the decision by the Humber and North Yorkshire integrated care board (ICB) to refuse referrals for all adults except those facing ‘immediate and life threatening health or family breakdown issues’.

The YDRF says the care board’s pilot programme amounts to ‘systemic exclusion’, with the absence of autism and ADHD assessments resulting in misdiagnosis of neurodivergent people.

This, it says, can lead to people either receiving no support, or the wrong kind of support, with negative consequences for their quality of life.

According to the YDRF, the ICB – which is now responsible for commissioning healthcare across the region – rolled the pilot policy out across York and North Yorkshire without proper consultation.

The trial was originally due to end on June 27 – but the YDRF says it has now been extended for a further nine months.

The result, the YDRF says, is that people who may have autism or ADHD are being denied access to assessment and therefore appropriate treatment.

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The YDRF says the care board has denied the pilot policy is a money-saving measure, instead describing it as a way to ‘stem the flow’ of referrals reported to have reached into the thousands.

The YDRF’s Hilary Conroy said: "Denying people access to appropriate assessment and treatment is not acceptable. For many of the neurodivergent people we represent, diagnosis has completely transformed, and even saved, their lives.

"We're seeking legal support as a last resort; we don't take this action lightly.

“NHS leaders have ignored or dismissed our every attempt to communicate with them to highlight the community's concerns relating to the decisions they have made.

"Assessment is a right, not a luxury."

In what the YDRF believes is one of the first such challenges in England for adults, it has launched a 'Access Denied' crowdfunding bid for the early stages of its legal challenge, with the aim of raising £5,000 to £10,000 to fund legal advice.

A spokesperson for NHS Humber and North Yorkshire Integrated Care Board (ICB) said today: "We acknowledge the concerns and anxieties of people seeking an assessment for autism and ADHD in North Yorkshire and York.

"The experience of our patients is our priority, and we actively review our approach based on the feedback we receive.

"We will listen to the concerns which have been shared with us and continue to work with clinicians, other healthcare professionals and people with lived experience of seeking a diagnosis for ADHD or autism to help develop a responsive assessment pathway for the future."

Campaigners, however, say the concerns go beyond North Yorkshire and the Humber - and fear the pilot scheme is likely to be replicated in other areas, as the neurodivergent community struggles to access NHS care.

Cat Owens, a national ADHD activist, said: “We are seeing similar schemes across the UK. In some areas vulnerable people are facing eight year waits for assessment."

Tim Nicholls of the National Autistic Society added: “We are incredibly concerned about anything that makes it harder to get an autism assessment. Changing the criteria for referral will not make the problem of long waits disappear, it just increases uncertainty and stress for autistic people and their families. Only funding a system with enough capacity to carry out high quality assessments will do that.”

Emily Douse, from Healthwatch York, said her organisation had already received distressing feedback about the impact of the pilot.

She said: “In response to public concern we volunteered to do an independent review of the pilot. Our findings highlight some unanswered questions regarding how decisions have been made and how the pilot was implemented.

“We’ve heard some distressing examples of how the pathway has impacted those seeking a diagnosis, and the wider community.

“We’re yet to receive the data from the integrated care board and ask that people continue to share their feedback. Only then can informed decisions be made about how best to serve the neurodivergent community.”

  • You can donate to the York Disability Rights Forum's 'Access Denied', autism and ADHD crowdfunding page here
  • If you or someone you know has been affected by the issues raised, YDRF can support you. Email ND@YDRF.org.uk or telephone 01904 326781.