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 27^th 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:

York

Email: hnyicb-voy.patientrelations@nhs.net
Phone: 01904 555999
Address: NHS Patient Relations, West Offices, Station Rise, York YO1 6GA

North Yorkshire

Email: hnyicb-ny.patientrelations@nhs.net
Phone: 01609 767607
Address: Patient Relations, 1 Grimbald Crag Court, St James Business Park, Knaresborough, HG5 8QB

Make a complaint:

• Through your GP practice (though, to be clear, GPs cannot change this decision)
• Through NHS England
• Through Healthwatch York (phone: 01904 621133)
  • or Healthwatch North Yorkshire  (phone: 01423 788 128)

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:

• Your local councillor
• Your local MP
• The current Health Minister Steve Barclay

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

• You can email us at ND@ydrf.org.uk
• You can leave us a voicemail on 01904 326781
• You can fill out this anonymous google form

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