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.
This pilot is taking place in North Yorkshire and the old footprint of Vale Of York. This includes York, Selby, Tadcaster, Easingwold and Pocklington
Update on Legal Action (13/11/2023)
Updated Template Letter for MPs and Local Councillors
If you don’t know who your MP is, you can find out here: https://members.parliament.uk/FindYourMP
If you don’t know who your Local Councillors are, you can find out here: https://www.gov.uk/find-your-local-councillors
YDRF in the Press
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.
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.
Thank you to everyone who donated to our crowdfunder who made this action possible.
YDRF in the Press
BBC Radio York 27/09/23 5:10pm
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
Read more: Autism and ADHD Assessment Access
Our most recent blog post sets out what we have done since the beginning of the pilot and where we are right now.
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).
YDRF has collected anonymous voices from our community in response to these changes. (Regularly updated)
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.
“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.”
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)
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 😛
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)
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).
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.