Autism and ADHD Assessment Access

This page will keep you up to date of any developments in the discussion around access to adult autism and ADHD assessments in York and North Yorkshire.

*Geography info*
This pilot is taking place in North Yorkshire and the old footprint of Vale Of York. This includes York, Selby, Tadcaster, Easingwold and Pocklington

Blog 9: April 2024 Update on Autism and ADHD Assessment Pathway

April 2024 Update on Autism and ADHD Assessment Pathway

Blog 8: Playing the Waiting Game (25/01/2024)

Updates on Decembers meetings, Right to Choose and our most recent legal letter.

Playing the Waiting Game

Overview of Legal Action (15/01/2024)

Legal Letter #3 from YDRF to ICB 15/01/24

ICB response #2 13/11/2023

Legal Letter #2 from YDRF to ICB 20/10/23

CrowdJustice Update sent 19/10/2023

ICB response to our legal letter 03/10/2023

Legal Letter #1 from YDRF to the ICB 19/09/23

Minutes of YDRF meeting with ICB 07/12/23 (published 12/01/24)

Minutes of YDRF meeting with representatives of the ICB 07/12/23

Waiting List Flow Chart (Updated Nov 23)

Am I on the waiting list?

Blog 7: Misleading Email from the ICB (05/11/2023)

Misleading Email from the ICB

Updated Template Letter for MPs and Local Councillors

If you don’t know who your MP is, you can find out here:

If you don’t know who your Local Councillors are, you can find out here:

YDRF in the Press

October 2023

Guardian/Observer: “Adult ADHD and autism assessment requests blocked by NHS screening system” (29/10/23)

Yorkshire Post: “Disability charity welcomes NHS engagement on ‘unlawful’ ADHD and autism assessment scheme” (21/10/23) [Please note: YDRF is not a charity, it is a constituted community organisation.

Blog 6: The Ever Shifting Sands of the Pilot Scheme (12/10/23)

The Ever-Shifting Sands of the Pilot Scheme

YDRF spoke at the York Health and Wellbeing Board (20/09/2023)

Helen Jones, chair of YDRF, spoke for us in the public participation section of the board. Hazel Kerrison, Cat Owens, Gemma Barstow (Spectrum First) and Manar Matusiak (Living Autism) also spoke in this section about the autism and ADHD assessment restrictions and its impact.

The agenda item covering this issue in which Healthwatch presented their evaluation report on the pilot scheme was moved last minute to be the final agenda item.

The meeting notes for the board included a discussion of the Dementia pathway which stood in stark contrast to the autism and ADHD pathways.

The attendee representing TEWV NHS left the meeting before the agenda item concerning the Healthwatch evaluation report.

You can watch the entire meeting on Youtube here.

Read the Legal Letter Bindmans LLP sent to the ICB 19/09/2023

Thank you to everyone who donated to our crowdfunder who made this action possible.

YDRF in the Press

September 2023

York Press: “York campaigners take legal action against NHS over autism referrals” (29/09/23)

ITV News: “Controversial York Health Pilot Making it Harder to Get ADHD Diagnosis” 26/09/23 (The videos are embedded in the article).

BBC Radio York 27/09/23 5:10pm

BBC Look North 27/09/2023 (Catch it on iPlayer here)

Legal Letter Press Release **IMMEDIATE RELEASE** 20/09/2023

Blog 5: Finally, Some Information (09/08/2023)

Finally, Some Information

Healthwatch York Report released (03/08/2023)

Healthwatch York have released their report evaluating the pilot. You can read the report here.

YDRF responded to the report in a press release alongside an update of how the crowdfunder for legal challenge is progressing. You can read the press release here.

The Healthwatch report and our comments were published in an article in the York Press on 11/08/2023.

YDRF spoke at the York Health and Wellbeing Board on (24/07/2023)

Cat Owens represented YDRF and Hazel spoke of their personal experiences during the public participation section of the meeting. You can watch the full meeting on the CYC YouTube channel (2hours). We have made two short clips below.

YDRF in the Press

July 2023

Big Issue “ADHD and autism campaigners plan legal action against NHS over referral limits” 19/07/2023

York Press “York campaigners plan legal fight against lack of autism assessments” 20/07/2023

York Press “‘I had been branded as useless, lazy, awkward’ – York woman Hazel” 20/07/2023

That’s TV York “Legal action is essentially our last resort” 28/07/2023 (Clip on Twitter)

Press Release and Case Studies **IMMEDIATE RELEASE** (20/07/2023)

Legal Challenge Crowdfunder Launched #AccessDeniedND (20/07/2023)

Read more: Autism and ADHD Assessment Access
#AccessDeniedND – Legal Challenge

Blog 4: Pilot Extended for 9 Months (05/07/2023)

Pilot extended for 9 months

Blog 3: End of 3-month Pilot Update (24/06/2023)

Our most recent blog post sets out what we have done since the beginning of the pilot and where we are right now.

The Sound of Silence: Communicating with the Humber and North Yorkshire Health and Care Partnership Integrated Care Board (ICB)

Blog 2: Autism and ADHD Assessments Update – Commissioner Response (12/04/23)

Autism and ADHD Assessments Update – Commissioner Response

Blog 1: Overview

In our first blog post we provide an overview of the current situation and the YDRF position (published 26/03/2023 and updated on 30/03/23).

Autism and ADHD Assessments to be Refused

Two megaphones

Our ND Community Speaks Out

YDRF has collected anonymous voices from our community in response to these changes. (Regularly updated)

Member blog: How My Autism Diagnosis Changed My Life by Lisa Bone

Member blog: ADHD Diagnosis is a Right, Not a Luxury by Carla Morris

We hosted an online feedback session with Healthwatch York (26/06/2023)

After our last drop-in session a few people asked if it would be possible to host an online version. We once again teamed up with Healthwatch to provide this on the 26th of June from 12 until 1.30pm on zoom.

We hosted a drop-in feedback session with Healthwatch York (26/05/2023)

On the 26th of May we teamed up with Healthwatch to host a drop-in session at CVS (Priory Street) between 10 and 12.30 for people to come and speak to us about the current autism/ADHD assessments pilot.

Response from Researchers at the Institute for Social Justice at York St John University (25/04/23)

“The undersigned suggest that the current diagnostic process needs to be urgently readdressed to ensure that changes do not have a negative impact on vulnerable individuals. Specifically, further consultation must include key stakeholders and full engagement with research evidence highlighted above”

Genius Within CIC statement on LinkedIn about the current trial by the North Yorkshire and York Health and Care Partnerships (13/04/23)

“We know that waiting until people hit a crisis before help is offered, is an incredibly harmful, and potentially dangerous strategy. For ADHD and Autistic people to thrive we need to be opening up more diagnostic routes, not closing them down”

Post by Elizabeth Smith MBACP (Accred) questioning the role of the Do It Profiler CEO Prof. Amanda Kirby in the gatekeeping of autism and ADHD assessments in York and North Yorkshire (06/04/23)

“I have enormous respect for Prof Kirby and her achievements and as such, I cannot stand by while a CEO who has been a great advocate for the neurodivergent community publicly endorses measures like universal and unrestricted access to clinical assessment, while privately benefiting from work that undermines these aims and may put neurodivergent people at risk.”

Twitter thread by @Free2BMeTherapy (06/04/23)

First tweet reads: In light of @NHSEngland new guidelines on autism assessment published today, these bring further concern re the pilot in York/North Yorks imposed by @York_HCP which directly contravenes many of them. A thread.

Free2BMe Open Letter to NHS England, Humber and North Yorkshire Integrated Care Board, and the Rt Hon Steve Barclay, Minister for Health (02/04/23)

York Press coverage of this issue (01/04/23)

Please note: the Press has not been in touch with YDRF. The quotes they use are taken from the blog post above.

The Do It Profiler Experience

One of our members completed the Do It Profiler and live tweeted and blogged the experience

First tweet reads: I am sure many will have heard about the new requirements to get an autism/ADHD assessment in York (& N Yorkshire)
Through what I can only describe as a clerical error I have ended up with access to the do-it profiler so welcome to my live tweet of it 😛

Do It Profiler Blog Part 1

Do It Profiler Blog Part 2

Do It Profiler Blog Part 3

The Retreat

The Retreat is the current provider of autism and ADHD assessments for adults in York and North Yorkshire.

They have published an information page on the changes.

Blog post by Emergent Divergence (28/03/23)

York Health and Care Partnership are going to harm Autistic adults

What Have the Decision Makers Said?

Posted two days after the introduction of the pilot, North Yorkshire CCG informed its patients of the changes (29/03/23).

One day later and three days after it was introduced, Vale of York CCG posted exactly the same article to inform patients of the changes (30/03/23).

North Yorkshire and York Adult ADHD and Autism Assessment and Diagnostic Service

Issues Elsewhere

Sadly, a similar refusal to assess for autism is happening to children in Bristol, North Somerset and South Gloucestershire. Read about it in this Guardian article (26/03/23) and this excellent info graphic from Bristol Parent Carer Forum. UPDATE: The group Assess for Autism crowd funded for legal action and sent a letter before action to the ICB. We send our congratulations to the group, as the ICB have reversed the decision following receipt of the letter.

Portsmouth City Council introduced The ND Profiling Tool in April 2022 for children and young people. It is completed with a trained professional and helps identify strategies. The profiling tool must be completed before clinical assessment is considered, but there is no suggestion that an assessment would be refused. It acknowledges that the current waiting list is long at 18+ months.