Disability charity welcomes NHS engagement on 'unlawful' ADHD and autism assessment scheme

York Disability Rights Forum (YDRF), a charity working to improve equal access and rights for disabled people, has warned Humber and North Yorkshire Integrated Care Board (ICB) - the NHS body responsible for care in the region - that a pilot scheme which has stopped adults in York and North Yorkshire from being referred for assessments for autism or ADHD could be unlawful.

The pilot, which has been in place since late March, means adults seeking a referral from their GP for potential diagnosis for autism or ADHD will be refused access to that assessment, unless they fit strict criteria such as posing an immediate risk of harm to themselves or others.

Shadow Health Secretary Wes Streeting wrote in The Times yesterday that plans put forward by the Royal College of GPs that would allow some patients to be turned away were “a plan for the managed decline of general practice” that could “hasten the rise of a two-tier healthcare service.”

No date has been set, though the ICB has agreed to a meeting with YDRF to increase engagement and avert the threat of legal action.

A letter sent by the charity on September 19 to the ICB expressed its concerns “at the restriction of access to diagnosis and support for the vast majority of neurodivergent adults in York and North Yorkshire,” and called for a halt to the ADHD and Autism Pilot Pathway.

Amongst the YDRF’s legal arguments are that the lack of impact assessment for the pilot puts the ICB in breach of the Equality Act. It also argues services provided by ICBs, according to the 2006 NHS Act, must include diagnosis and treatment.

Demand for assessment of potential autism and ADHD in adults has exploded in recent years. Between July and September 2021 141,000 patients were prescribed medication for the condition - which can cause impulsive behaviour and affects concentration and decision making - compared to 170,000 in the same period in 2022.

While prescription figures show the numbers of people being treated, the charity ADHD Action believes there could be as many as 1.5 million adults in the UK with the condition.

YDRF has welcomed the opportunity to discuss the pilot with the ICB, as it was crowdsourcing legal action that could cost up to £50,000.

Hilary Conroy, Disability Activist at YDRF said: “It is a very costly system which prevents people from accessing justice despite legal duties, the NHS constitution and NICE guidelines having been breached in this case.

“Both autistic people and ADHDers struggle with employment due to neurotypical systems and norms, and a lack of adjustments, especially those who are unprotected by the Equality Act 2010 as a result of not having access to diagnosis.”

In response to the letter from YDRF, the ICB replied that it “acknowledges that it could have approached the launch of the pilot more openly with service users and organisations supporting them,” and that it welcomed “YDRF’s involvement in the engagement work which is being undertaken, including suggestions and observations about how the service may be commissioned differently in the future.”