Learning Disability Today
Supporting professionals working in learning disability and autism services

People in York facing ‘endless waits’ for autism and ADHD assessments

Campaigners are warning that a pilot scheme in North Yorkshire and York is preventing people from accessing autism and ADHD assessments.

The pilot scheme, which has been in place since March 2023, directs adults seeking an assessment to an online survey which decides if they should be assessed.

Initially, only those who were in crisis or met one or more of a “very strict set of criteria” were granted access to an assessment.

Now, this has changed, and only direct referrals can be made by the Community Mental Health Teams (CMHTs).

York Disability Rights Forum (YDRF) says there are “significant barriers to being accepted onto these teams” and these teams are “already stretched beyond measure.”

“It also requires these teams to have sufficient understanding of neurodivergence to identify it, which is currently significantly lacking,” the charity added.

The charity has also raised concerns about the lack of autism and ADHD referrals taking place. In the first two months of the pilot, 90% of referrals were rejected. Indeed, of the 1,250 people who registered for the survey, only 126 people were referred for an assessment.

Now, more than 2,700 have registered for the survey, but only 501 have met the criteria for an autism or ADHD assessment, but the YDRF says not one person has been assessed from this group since March.

Humber and North Yorkshire ICB says they will not cease pilot scheme

The YDRF has written to Humber and North Yorkshire Integrated Care Board (ICB) warning them that this scheme could be unlawful, and urged them to halt the scheme.

In response, the ICB said it is “not in a position to cease the pilot pathway at this stage”, but that it would “welcome YDRFs involvement in the engagement work which is being undertaken.”

Now the ICB has also agreed to meet with YDRF, although no date has been set.

Following this exchange, Humber and North Yorkshire ICB wrote to those who remain on the Autism/ADHD waiting list saying they are now “maintaining a waiting list of people registered on the online platform who have not met the acceptance criteria for referral at this time.”

“Subject to consent, registered users of the platform can remain on the waiting list until capacity for onward referral for assessment becomes available,” the letter said.

Charity says autism and ADHD assessments will not be offered to anyone who does not meet the criteria

The YDRF says they are “frustrated” by this email as it “further confuses patients about what is really happening in York and North Yorkshire.”

Specifically, the charity says they are concerned because there is no timescale for this list, and it is simply an “endless wait.”

In a blog post explaining their concerns, the YDRF said: “This pilot scheme came about because there is not enough time left in the Retreat’s contract to meet the demand.

“This has not, and by all accounts will not, be changed. To suggest that at some point in the future 2,700 [plus] people might be assessed if they just hang on in there is unethical, unfair, and untrue.

“The fact remains that the ICB will not provide a service to anyone who does not meet the criteria.”

ICB says without the pilot waiting lists could have closed

The YDRF is now urging the 2,700 people who received the email to make a complaint to the ICB if they are unhappy with the situation.

The charity has also created a template letter to send to local councillors or MPs if you wish to raise concerns about this pilot scheme.

A spokesperson from umber and North Yorkshire ICB told LDT: “Under the pilot approach no-one is being denied an assessment. Everyone registered on the online platform can remain on the waiting list for future prioritisation based on their needs.

“In practice, those with a less severe clinical need (green or amber priority referrals) may be overtaken on the waiting list by those with priority need (red priority referrals). Better understanding of any potential impact of this is one of the reasons we are piloting the approach prior to making any final decisions about future models.

“We would like to explore what more can be done to support people and will be further engaging with our communities in autumn and winter 2023 as we look to develop a sustainable approach to supporting adults presenting for autism and ADHD assessment for the future.”

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