North Yorkshire and York Health and Care Partnership* are removing access to autism and ADHD assessment and diagnosis for adults in North Yorkshire and York in new pilot

*Apologies to TEWV NHS who were previously named as having made this decision.

YDRF includes autism, ADHD and other neurodivergence in our definition of disability. The social model of disability perspective is that the neurotypical society we live in is disabling for neurodivergent folks.

From Monday 27th March 2023, a 3 month pilot will begin which will mean that adults who approach their GP seeking an autism and/or ADHD diagnosis will be refused 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

If they do not meet these criteria, they will instead be provided with a code to access a self-report questionnaire called the Do It Profiler. Individuals will be told to fill this in themselves (and some assurances were made that primary care workers would be assigned to support those unable to do this independently).

Once completed, the Do It Profiler will provide a report which details areas of strength and support needs. (Please note: we have not yet seen what this report includes). The Do It Profiler is not a diagnostic tool and will provide neither sufficient evidence for disability benefits nor access to medication in the case of ADHD.

York Health and Care Partnership Commissioners, following discussions with the Clinical Lead for The Humber and North Yorkshire, The LMC and The Retreat, have made this decision suddenly, without any consultation or due process, despite multiple ongoing links with the local neurodivergent community and self-advocate groups.

There are 2000 people currently on the waiting list and they will wait approximately 20 months to 2 years for their assessment. Commissioners stated they need to “stem the flow” of referrals due to a funding contract limitation. They consider the Do It Profiler sufficient to most people’s needs.

We have been told that this decision will not affect those already on the waiting list.

YDRF Position

YDRF are speaking out against this plan of action which will deprive people of their access to assessment and diagnosis. We are very concerned that there has been no risk assessment, no engagement with the people who will be affected, and no consideration of the potential deadly impact of this decision.

This decision appears to have been made purely for financial and systemic reasons, without due regard for patient wellbeing.

Patients come first in everything we do. We fully involve patients, staff, families, carers, communities, and professionals inside and outside the NHS. We put the needs of patients and communities before organisational boundaries.

The NHS Constitution for England, 2021

NHS patient rights include the right to “be treated with professional standards by qualified and experienced staff”. We believe the Do It Profiler fails to uphold this right.

We are currently unclear about how this decision will impact the Right to Choose pathway and have asked for clarification.

Update: The Retreat’s statement describes that the same three eligibility criteria listed above will be applied across the board, including any NHS referrals to private providers.

NICE guidelines for ADHD state that adults who present with symptoms of ADHD should be referred for assessment by a specialist with training and expertise in the diagnosis of ADHD. NICE guidelines for autism state that if a person scores 6 or above on the AQ-10, or autism is suspected based on clinical judgement, they should offer a comprehensive assessment for autism.

So what can you do about it?

If you are refused assessment for autism and/or ADHD by your GP, there are actions you can take to have your voice heard.

Contact the decision makers directly:


Phone: 01904 555999
Address: NHS Patient Relations, West Offices, Station Rise, York YO1 6GA

North Yorkshire

Phone: 01609 767607
Address: Patient Relations, 1 Grimbald Crag Court, St James Business Park, Knaresborough, HG5 8QB

Make a complaint:

Healthwatch York have now provided a feedback page specifically for the Autism and ADHD Assessment and Diagnostic Service

Healthwatch York also have a survey for people who have been sent the do-it profiler, the results from which will make up part of their independent evaluation

You can also contact:

We at YDRF are keen to hear from you about your experiences.

YDRF have a Neurodivergence sub-group you can join if you would like to get involved in local disability rights action.

We are stronger together.

13 thoughts on “Autism and ADHD Assessments to be Refused”

  1. This is shocking. As a parent of a son and daughter both diagnosed in adulthood with Autism and ADHD, I know what a enormous difference a diagnosis makes to quality of life. Both were clinically depressed and a diagnosis certainly saved the life of one of them. This is just a cost cutting exercise, so no change there with this Govt. Which group will they target next, I wonder.

    1. This is ridiculous. As if diagnosis wasn’t already way too difficult and stressful. How could anyone think that this is acceptable?

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  4. We absolutely need to stand up against this decision. Who made the decision, who did they consult with and what was the process?
    I believe this breaches the NHS constitution.

    1. Whoever has made this decision clearly does not understand autism. Mental health services do not have a great understanding of autism so I believe this decision will lead to more deaths.
      Obviously they have not learnt anything from my daughter’s death in 2020.

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  6. This is a disgusting policy. I’ve personally witnessed the effect of workplace bullying on someone with undiagnosed ADHD. Although he has now got a diagnosis the damage to his confidence and mental wellbeing has been longstanding. A diagnosis is not only important to the individuals who are seeking answers, but it helps employers understand their employees better. A diagnosis also covers people with the Equality Act, which reduces workplace bullying, ensures reasonable adjustments are made and significantly reduces unfair dismissals. This approach is short – sighted and is highly likely to result in increased suicide and self-harm, more work place bullying and higher levels of unemployment and homelessness.

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