Legal Letter Press Release **IMMEDIATE RELEASE** 20/09/2023

Campaigners take legal action over NHS policy preventing access to autism and ADHD assessments   

Lawyers have called for the immediate suspension of an NHS decision to refuse autism and ADHD assessments to adults.   

A legal letter on behalf of the disabled-led York Disability Rights Forum lists multiple ways in which NHS leaders for York and North Yorkshire are breaching legal and statutory responsibilities, national care guidelines and the NHS constitution, with their decision to withhold nearly all assessments for ADHD and autism.  

If the pilot policy is not suspended, legal proceedings are expected to be brought against the North Yorkshire and Humber integrated care board (ICB), the letter from Bindmans LLP warns.  

The legal challenge follows the huge success of York Disability Rights Forum’s crowdfunding campaign which has raised more than £7000 and garnered national support from campaigners and charities. The National Autistic Society is among the supporters, cautioning that these restrictions could be a sign of things to come for neurodivergent people living throughout the UK.  

An FOI request has shown that 90 per cent of those seeking autism and ADHD assessments in York and North Yorkshire have been rejected by the pilot since March and will not receive any assessment, diagnosis or treatment from the NHS.      

GPs are no longer able to refer patients and instead have to direct them to an online survey which only grants assessment to those facing ‘immediate and life threatening health or family breakdown issues’.  

Heartbreaking testimony from those seeking assessment has shown how some have been pushed into crisis or have been left unable to access life-saving treatment or support, as campaigners warn of the significantly elevated suicide risk among those people with autism and ADHD.  

Government strategy on suicide prevention published this week highlighted that “undiagnosed or late-diagnosed autism may be a preventable risk factor for suicide and, therefore, earlier identification and timely access to autism assessment services is vital”. And the risk of suicide for those with ADHD was not mentioned in this strategy, despite one in ten men and boys and one in four women and girls with ADHD attempting suicide at some point in their lives.   

Hilary has short hair and is wearing black rimmed glasses and a pink top

Hilary Conroy, from York Disability Rights Forum (YDRF), said: “Adults seeking autism and ADHD assessments have often been struggling their whole lives and have spent many hours, sometimes years, reading, filling in questionnaires and researching before approaching their GP. For the NHS to reject them outright and provide an online survey instead of care is appalling, and we must do everything we can to reinstate proper assessment, diagnosis and treatment for this highly vulnerable group.”    

The ICB have said that the pilot allows them to ensure those who are most at risk are prioritised for care. However, YDRF are aware of patients who were accepted by the pilot scheme in March and have not yet had any contact or been invited to assessment six months later.    

Henry Shelford, of ADHD UK, said: ”We are greatly concerned about the pilot in York and North Yorkshire, as it sets a precedent to deny NICE-recommended NHS care to people in need. We understand that this pilot creates a two-tier list – the first tier gets treated, and the second tier is effectively never treated.  

“This pilot means people in medical need are coming forward for help, their GP is recommending that help, formally referring them for Assessment, but they’re then being denied it.”   

Warning that the pilot could be extended nationally and to other conditions, including depression or eating disorders, he added: “They are taking advantage of the stigma around ADHD, the lack of public understanding of the severity of ADHD, to test an NHS denial-of-care strategy that can grow to affect everyone. It is in everyone’s interest that this pilot be cancelled.  

“We have written to the ICB to urge them to cease this pilot, return to providing ADHD Assessments based on clinical need as properly directed by a GP, and seek to return to providing the complete mental healthcare provision the people of York deserve”.  

Emily Douse, of Healthwatch York, said they were concerned the decision was made to extend the pilot before receiving feedback from those affected. ”We’re yet to understand if, when, and how the ICB will address the concerns raised by professionals and the public.”  

Gemma Barstow, of Spectrum First, who provide specialist support to students said: ”Autistic and ADHD students are significantly disadvantaged due to barriers in Higher Education. One of the ways in which this is mitigated is through a support provision from Disabled Students Allowance, which provides specialist equipment and professional support to these students at University. The criteria for accessing this is a diagnosis, or to be on a waiting list for a diagnosis, neither of which are now accessible for autistic and ADHD students in York.”  


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