Campaigners in Yorkshire eye legal action over extension to NHS autism assessment pilot

Campaigners in York and North Yorkshire are planning legal action over an NHS decision to extend a controversial autism and ADHD assessment pilot, amid claims it leads to adults being refused referral to assessment unless they meet certain criteria.

The York Disability Rights Forum (YDRF) revealed it has secured legal advice about launching a judicial review to challenge the decision which it says amounts to “systemic exclusion”.

The group argue the policy is “unfair, unrealistic and denies patients a potentially life-saving diagnosis”.

In March 2023, The Humber and North Yorkshire Health and Care Partnership launched a three-month pilot which meant that adults who approach their GP seeking an autism and/or ADHD diagnosis will not obtain access to assessment unless they meet one or more of the following criteria:

1. Immediate self-harm or harm to others. A mental health assessment must have been undertaken and a crisis management plan in place.
2. Risk of being unable to have planned life-saving hospital treatment, operations, or care placement
3. Imminent risk of family court decisions determined on diagnosis e. g family breakdown, custody hearing

An adult who does not obtain access will then go on a waiting list and be offered interim support.

Earlier this month, YDRF were informed that a decision has been made for the autism and ADHD assessment pilot to be extended for nine more months.

Commenting on this, the campaign group said: “The decision to extend, like all decisions up to this point, has been made without the community, behind closed doors. The statement released by the ICB (17 days after the pilot was due to end) was not shared or publicised and leaves many questions unanswered.”

YDRF has launched a crowdfunding bid for the early stages of their legal challenge, with the aim of raising £5,000 to £10,000 to fund legal advice.

The group warned the scheme was “likely to be replicated in other areas, as the neurodivergent community struggles to access NHS care”.

Hilary Conroy, from YDRF, said: “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.

“Denying people access to appropriate assessment and treatment is not acceptable. We will continue to champion the voices of the neurodivergent community and will not give up on them. Assessment is a right, not a luxury.”

The Vale of York and North Yorkshire CCG website states that Healthwatch York, an independent voice and patient champion, is conducting an assessment on the first three months of the pilot (March – June 2023) and its findings will “help us adjust the platform to better meet the needs of people seeking support”.

A spokesperson for NHS Humber and North Yorkshire Integrated Care Board (ICB) said: "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 a 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.”

Lottie Winson