Written by Molly Sharples.
People who believe they may have attention deficit hyperactivity disorder (ADHD) say their lives are being put on hold by York's decision to introduce a controversial assessment scheme.
The pilot scheme was introduced in the city in response to a backlog of people waiting to be assessed for autism and ADHD.
Under the pilot, patients cannot access an assessment unless they meet an urgent criteria.
Health bosses say it allows them to prioritise the "most at-risk adults".
However, disability rights campaigners in York say the scheme is "harmful" and discriminatory.
Video report by Molly Sharples.
The scheme was introduced in response to long waiting lists for ADHD assessments, with patients waiting an average of 108 weeks - or just over two years.
In March 2023 The Humber and North Yorkshire Integrated Care Board (ICB), reportedly had 922 people waiting for an ADHD assessments
In response, the ICB introduced a three-month long ADHD and autism assessment pilot.
Under the pilot people who approached their GP for an assessment were sent a link to an online questionnaire called the "Do-it profiler".
The questions asked were used to determine whether the person met a new urgent criteria.
What is the criteria being used?
Immediate self-harm or harm to others. A mental health assessment must have been undertaken and a crisis management plan in place.
Risk of being unable to have planned life-saving hospital treatment, operations, or care placement
Imminent risk of family court decisions determined on diagnosis e. g family breakdown, custody hearing
Cherelle Cinders Logan, a single mum-of-three from York, suspects she may have ADHD and often feels "overwhelmed" and "like a failure".
She has been unable to get an assessment because she does not meet the criteria.
Ms Logan said: “I think it [a diagnosis] would give me the clarity to move forward, to understand that this is why this is happening but also to access the services of medication.
"Just an action plan. Just to know that there is light at the end of the tunnel.”
"You don’t want to admit that you might need help, so then when you do ask for help and you do finally get to the doctors to be turned away it just makes you feel like there’s no, there’s no end to this, this is going to be my life forever.”
In June 2023 the ICB deemed the pilot scheme to be working well and extended it for a further nine months to last until March 2024.
Now the York Disability Rights Forum (YDRF) have submitted a legal letter to the ICB calling for the immediate suspension of the pilot.
In the letter they add that they are "very concerned at the restriction of access to diagnosis and support for the vast majority of neurodivergent adults in York and North Yorkshire."
The YDRF have now submitted a legal letter to the the ICB.
Hilary Conroy, from the YDRF said: "When they took the decision to extend the pilot we felt that there was nothing else we could do, other than seek legal advice.
"We’ve tried everything else, this is our last resort. We didn’t want to come this way, but, we feel like we haven’t been given any other alternative."
Ms Conroy added that the YDRF are concerned about the risk of harm caused by the pilot, claiming the risk of suicidality within the ADHD and autistic community is very high, particularly when undiagnosed.
She added: "There has been no risk assessment published so we don’t know how seriously they are taking this risk and certainly they don’t seem to understand it.
"We are concerned that there was no consultation with the neurodiversity community."
In response to the submission of the letter a spokesperson for NHS Humber and North Yorkshire Integrated Care Board said: "NHS Humber and North Yorkshire ICB has received a letter sent by lawyers on behalf of York Disability Rights Forum (YDRF).
"The ICB will address the issues in that letter directly to lawyers representing YDRF. The ICB is grateful for the feedback it has received so far on the pilot."
Conducting a report about the pilot, watchdog HealthWatch York said 126 of the 1,200 people who wanted an assessment, got one, which meant about 10% of those who asked met the criteria.
Emily Douse from the group said the scheme is putting people "at risk of self-harm".
She added: "It's complete disregard for their mental well-being. They don’t feel valued.
"If this was any other area of healthcare where you’re being denied the right to support and a diagnosis and treatment and care people would be outraged."
MP for York Central, Rachael Maskell, also questioned the the pilot scheme.
She said: "For some it’s been more harm than good.
"For others it’s left them in a space of not knowing where they stand and not being able to have a tool that really accurately drills down into their own particular diagnosis, means that many are just left in this quandary as to what happens next.
"It’s really an unsupported programme.”
NHS Humber and North Yorkshire Integrated Care Board were approached for comment regarding the criticism they have received regarding the pilot scheme, but did not wish to provide one.
Previously a spokesperson has said: “The changes are in the context of growing demand for adult autism and ADHD assessments resulting in unacceptable wait times and the need to prioritise resources towards most at-risk adults.
"Previously, all referrals were assessed in chronological date order and there was no system for identifying those people who needed help more urgently.
"Data from the Profiler can help us understand where the greatest need is to developthe most relevant programmes and workshops for people needing support.
"This enables us to provide targeted information about functional skills such as timemanagement, organisation, dealing with anxiety and low mood and understandinglocal pathways to services."
When asked about the future plans for the pilot scheme, the ICB said: "It is important to engage with and hear people's views as the pilot progresses.
"It would be premature to talk about what the criteria of a future policy might look like while the pilot is ongoing and feedback is still being received.
"NHS Humber and North Yorkshire Integrated Care Board will fully consider patient and clinical feedback before any future policy is determined."
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