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

As the pilot restricting Autism and ADHD assessments in York and North Yorkshire is due to end on Tuesday 27th June, we had hoped to write a blog this week to explain ICB’s plan for the future.

Despite several requests for clarity, and assurances earlier this week of an ‘update’, the ICB have still not responded. If there is a plan, the ICB seems to have sworn an oath of silence on communicating it.

At a Connecting Our City meeting on 9th May, one of the York commissioners stated that the ICB was considering the use of a RAG (red, amber, green) rating system, but did not elaborate on what this would mean in practice for new referrals or the potential impact of this on the current waiting list.

They stated in this meeting that Tees, Esk, Wear Valley NHS (TEWV) (who run our local mental health services) were involved in this planning, but when we put a Freedom of Information request in to TEWV about this planning, they replied:

“TEWV are not providing diagnostic assessments within the NYYS patch and it is the ICB that have commissioned this pilot so they would be the people to provide information regarding the FOI.”

So, what have we been doing?

Many of you will have heard about the pilot from our first blog post (opens in new tab) about it.

We also wrote a follow up post (opens in new tab) which responded to the reply received by many of our members when they raised their concerns with the ICB and local MP.

We wrote to every MP with a constituency in York and North Yorkshire with a briefing about the pilot and request for solidarity. We did not receive a reply from any of them.

YDRF created a Neurodivergence subgroup which is currently fully focused on this issue. We have been supporting people affected by the pilot to understand their rights and make complaints, as well as providing space for venting and peer support. We feel this is our core work.

Healthwatch York (opens in new tab) have taken on the mammoth task of evaluating this pilot. We have collaborated with them to set up an in-person space for people to come and discuss their issues. We are hosting an online version on Monday 26th June at 12pmfree spaces available via this Eventbrite link (opens in new tab). The Healthwatch report should be released in early July, so watch this space.

Thank you

We would like to thank those who submitted their thoughts on the pilot to our Voices page (opens in new tab) (over 130 people and counting). It has been a beautiful example of solidarity and an outpouring of empathy from many of the ND community who have diagnoses and deeply understand the impact of the current restrictions on those who don’t.

Another big thank you goes to our members Lisa (autistic) and Carla (ADHDer) who wrote blog posts (opens in new tab) about the importance of their diagnoses and how life-changing the experience can be.

What did we find out?

Due to the outrage about the pilot and questions around how the decisions were made and by whom, we aimed to find out what we could about where it came from.

We submitted multiple Freedom of Information requests and we received remarkably little in response. Here’s what we learned.

We asked for the minutes of the meeting where the decision was made to launch the pilot.

They said:

“NHS Humber and North Yorkshire ICB can confirm that discussions regarding the pilot took place at the York HCP Executive Meeting in October 2022 and the North Yorkshire HCP Operational Delivery Group in November 2022. The ICB can confirm that the requested information in relation to minutes is not held as no minutes were taken at these meetings, however, the [report to ICB 8/11/22] was received, and accepted, with a recommendation for an Equality Impact Assessment to be developed.”

Report to ICB (8th November 2022)

In this report, we noted the following important pieces of information:

“The Retreat is currently receiving an average of 180 referrals per month, with the biggest increase being in ADHD as opposed to Autism. This means that as well as the cost impact for the assessments there is a significant increase in the costs needed for the medication reviews for those individuals who receive a confirmed diagnosis.”

“[The Retreat] updated that based on the current number of referrals they have on the waiting list and waiting to be triaged they will have already used 90% of the contracted value for 5 years and will need the remaining 4 and a half years of the contract to complete the activity including all of the associated medication reviews for those on the ADHD pathway.”

It is difficult to square these comments with the ICB’s insistence this decision was not made due to financial concerns and contract limitations.

“It is important to note that the diagnosis rate has remained consistent at around 85%, suggesting these are appropriate referrals.”

This means that the ICB was aware from the outset that people would lose out on appropriate assessments and diagnoses, which challenges the notion that the rise in referrals has been based on misinterpreted Tic-Tok videos.

“Prior to the end of the 3-month trial period, a paper will be brought back to this meeting to update on the position and make further recommendations for a more sustainable long-term solution.”

We’d be interested to know if this happened and if it has, why this solution has not been communicated. Yet again, we must highlight the lack of collaboration with the community in decision making and developing solutions.

TEWV Report

We were made aware of a report written by TEWV regarding the autism and ADHD pathways and presented to the North Yorkshire and York CCGs in October 2020. This report apparently suggested a better way forward informed by people with lived experience. The CCGs rejected this proposal and chose instead to repeat their mistakes from 2017, which has ultimately led us to this predictable point of crisis.

The ICB declined to release this report to us as it is TEWV’s property. You can see the response we received from TEWV above. We are following this up.

Equality Impact Assessment

We asked for the Equality Impact Assessment which we were assured on 9th May was completed and in place.

They said:

“NHS Humber and North Yorkshire Integrated Care Board (ICB) can confirm that it does not hold a fully completed and approved Equality Impact Assessment.

An Integrated Impact Assessment (IIA), which includes an Equality Impact Assessment (EIA), was initiated as part of the project to ensure that the pilot activity helped to promote equality, challenge discrimination and is accessible to all. The IIA continues to be developed as the pilot progresses. Feedback from the pilot including people with lived experience/users of the Do-it Profiler will inform the final IIA.

Upon full completion and approval it is intended for the information to be made publicly available via the ICB website in due course.”

We look forward to reading this document and seeing how it accounts for the significant harm which has been experienced and will continue to be experienced into the future as a result of this pilot.

The (Please Don’t) Do It Profiler

We asked for clarity around how the decision was made to use the Do It Profiler (DIP) by commissioners, and what assurances they had of its reliability and validity.

They said:

“Commissioners have worked with York-based service provider, The Retreat, to explore the option of a web-based tool, the Do-It Profiler, which provides functional guidance for adults with ASD/ADHD. It has been proposed that further work is undertaken to test the viability of this approach, including an understanding of costs.

This link below provides insight, rationale and evidence for the Do-IT Profiler:

Do-IT Profiler is not an assessment and is not being used as an assessment, but a person-centred tool (based on self-reflection) to identify a person’s unique strengths and challenges.”

We would also be interested in the cost of the service, if there was any competitive process in its procurement, and what assurances were given regarding how appropriate its application would be as part of this pilot.

We do not feel the link provided offers any assurances to the specific use of the DIP in this pilot. Its current use in York and North Yorkshire is not what the DIP is usually used for and it raises questions about how the NHS protects its patients in commissioning digital services which will hold significant amounts of sensitive data.

Infantilising video

Peter Billingsley speaks to patients through a video at the beginning of the DIP process.

One patient was shocked by Mr Billingsley stating:

“Like yourself, the profile needs to grow and mature and we need to learn from your experiences.”

To the patient, this suggested that anyone seeking a diagnosis needed to ‘grow up’ and also created concern about how their data would be used by this private company and the NHS.

Faulty Questionnaire?

Some people raised concerns about the DIP from a psychological science perspective.

The main concerns raised were:

  1. It does not meet principles of good questionnaire design. Many items are double-barrelled and could be interpreted in too many different ways. They are ambiguous and will therefore lack predictive validity.
  2. It has no reliability analysis – standard questionnaires for use in medical, educational, forensic, clinical and occupational settings should have had correlationary analysis to check that the items related to each underlying construct (for example memory, verbal skills) are trending in the same direction. If, for example, I score 1, 3, 2, 5, 3, 4 out of 5 on six questionnaire items that are all supposed to relate to the same thing, it is clear that my answers veer wildly and that the items are not measuring one thing. This analysis is called an alpha co-efficient and good questionnaires range between .7 and .93 on correlations between items pertaining to each underlying factor. They should be published and peer reviewed.
  3. It also has no factor analysis. A factor analysis is where you put all the scores for 200+ people into the analysis and see where the groupings lie, so does X score mainly 2’s over here and mainly 5’s over here and when you look at what they scored 2s or 5s for they are in fact all related to clearly distinctive underlying constructs, or ‘factors’ such as memory or verbal skills items. This is the gold standard of questionnaire design. No tool should be used in a clinical setting without this analysis. The AQ50, the DIVA have all had this analysis.   

What’s next?

We will continue to support our ND community, especially anyone affected by the pilot, as we know the impact of these changes will continue well beyond Tuesday.

We will continue to challenge the ICB to understand the impact of their decisions and the need to involve our community in changes that will affect us.

We will continue to keep people updated with information as we get it and we will seek out more information so people can make sense of what is happening.

What can you do?

If you have been affected by the pilot and wish to make a complaint to the ICB, you can send an email to: (York) or (North Yorkshire)

You can also join YDRF and Healthwatch online on Monday 26th at noon – free spaces available via this Eventbrite link (opens in new tab).

If you need support or would like to get involved in the work, contact us at:

A final note

We should probably apologise for the tone of this blog, but to be honest, after three months of utter frustration and constant gaslighting, it is more than warranted. We should not have to beg for basic transparency.

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