A lot of people have been in touch with us this week about an email they have received from the Humber and North Yorkshire Integrated Care Board (ICB). Thank you to everyone who contacted us and alerted us to this.

The Email

Your consent to remain on Autism/ADHD waiting list

We are emailing you as you are a registered user on the North Yorkshire and York Platform for Adult Autism/ADHD referral (Do-IT Profiler).

Based on feedback received during the initial pilot, we are now maintaining a waiting list of people registered on the online platform who have not met the acceptance criteria for referral at this time.

Subject to consent, registered users of the platform can remain on the waiting list until capacity for onward referral for assessment becomes available.

If you wish to remain on the online platform waiting list for assessment, please login to the platform using your original username, and give your consent to remain on the platform and for your data to be used for the purposes of future triaging of your referral.

If you do not wish to remain on the platform, you can delete your account and associated data by going to the ‘My Account’ area whilst logged in to the platform.

Other than technical enquiries, please contact hnyicb-ny.adultnd@nhs.net for further support and guidance.

Many thanks

Humber and North Yorkshire Integrated Care Board

Our Concerns

We are frustrated by this email as it further confuses patients about what is really happening in York and North Yorkshire. Specifically, we are deeply concerned by the misleading use of the term “waiting list” in this email.

As we made clear in our second legal letter, point 14:

“First, the Response states “none of these steps prevent someone from remaining on the waiting list for assessment and diagnosis provided that they meet the NICE eligibility for an assessment”. That statement is incredibly misleading. A person being referred under
the Pilot Pathway cannot access assessment or diagnosis unless they meet the three criteria set out in the Pilot Pathway and are then triaged for assessment.

Any list of people who completed the Do-It Profiler but did not meet the pilot criteria is a list of people who cannot access assessment, this is not a waiting list. These people receive poor quality general advice from the Do–It Profiler and then remain on a list for no known purpose. The ICB must publicly confirm this, that anyone who does not meet the pilot criteria will not be able to access assessment or diagnosis unless or until the ICB’s commissioning arrangements are amended.”

Our waiting list flow chart also makes this point clearly. There is no timescale for this list, it is an endless “wait”.

It is very difficult not to see this email as a further barrier for people to recognise that they have been REJECTED by the pilot scheme and WILL NOT gain access to assessment unless they deteriorate sufficiently to meet the criteria.

The ICB are leaving people in a sort of purgatory where they are pacified and confused enough not to recognise their position and make a complaint.

This pilot scheme came about because there is not enough time left in the Retreat’s contract to meet the demand. This has not, and by all accounts will not, be changed. To suggest that at some point in the future 2700+ people might be assessed if they just hang on in there is unethical, unfair, and untrue.

The fact remains that the ICB will not provide a service to anyone who does not meet the criteria.

Even the 501 people who met the criteria have not yet been seen. Not one person has been assessed from this group since March. This was recently covered in the Guardian newspaper showing how the ICB’s actions in York and North Yorkshire are of national concern.

Patients who cannot access assessment and treatment under their local commissioning arrangements should be able to access the Right To Choose (RTC) pathway under the NHS constitution. But by claiming a waiting list exists, and refusing to fund RTC referrals, our ICB has arbitrarily decided this right simply does not apply in York and North Yorkshire.

Transparency

Transparency is a core principle of the ICB’s Constitution which states that it will:

• provide information that is clear and easy to understand, free of jargon and in plain language;
• be timely, targeted and proportionate in how we communicate and engage;
• foster good relationships and trust by being open, honest and accountable;
• ask people what they think and listen to their views;
• talk to our communities including those most likely to be affected by any change;
• provide feedback about decisions and explain how public and stakeholder views have had an impact;
• work in partnership with other organisations in Humber and North Yorkshire;
• use resources well to make sure we get the most out of what we have;
• review and evaluate our work, using learning to make improvements.

The ICB have shown contempt for transparency in their communication and decision making. As we highlighted in our previous blog post, they have quietly extended the pilot by another 3 months and changed the first criteria to now require patients to be on the caseload of the Community Mental Health Teams, which means that they have further restricted the number of people eligible. A move which they have repeatedly and bizarrely described as “expanding the criteria”.

The ICB seem to be treating our requests for information as a game to see how they might avoid transparency. In their most recent response to our Freedom of Information request, they claim that they cannot provide any information about their response to the Healthwatch York evaluation report, any evaluations of the Do It Profiler, a copy of any risk, equality, or data protection assessments, or indications of what they are doing to mitigate the risks associated with those identified as high risk.

They claim all of this information is exempt under Section 42 of the FOI Act which relates to Legal Professional Privilege which states: “The information has been communicated between lawyers and clients. This information cannot be disclosed because the confidential relationship between lawyer and client is protected.” We believe this is a misuse of the section to withhold important information from the public.

Take the case of the Equality Impact Assessment.

We were assured by a commissioner that one had been completed on 9th May, but then through FOI learned it was not completed by 24th June, but were told the ICB couldn’t share the draft as the final version would “soon be made publicly available“.

On 31st October, we are told “it is intended for the information to be made publicly available via the ICB website in due course” but is exempt from FOI under section 42.

For a basic document, legally required to be in place BEFORE making drastic changes to services, this is incredibly poor practice.

Fighting Misinformation

The ICB frequently frame the Do It Profiler online survey as never-before-seen “help” and “immediate support from the point of referral” despite significant numbers of patients saying how distressing the experience of filling it in was, and how useless they found the endless pdf files.

This political spin is uncritically copied and pasted into endless emails and reports.

They also state that “data from the online platform can help us develop the most relevant programmes and workshops for people needing support, including targeted information about functional skills such as time management, organisation, dealing with anxiety and low mood and understanding local pathways to services“.

Nobody asked for these “programmes and workshops” and nobody consented to their data being used in this way.

People are seeking assessment and diagnosis because their lives are falling apart, they are struggling at work or in university, they are having mental health struggles not recognised by the system because they are neurodivergent.

Telling people you will support them to get better at functional skills is insulting at this stage.

The ICB consistently states it is shifting to a “needs-based service“.

NHS England expressly warns ICBs against this:

“For an undiagnosed autistic person access to personal understanding, healthcare, education, social care, reasonable adjustments in the workplace, statutory protection from discrimination, or benefits may be withheld. For these reasons, it is important that ICBs do not restrict or withhold access to an autism diagnosis, for example, because locally a decision has been taken by health to conduct only a needs-based assessment”.

Tyne, Esk, and Wear Valley (TEWV) NHS

TEWV have continued to ignore our Freedom of Information requests.

Initially they said they had ‘nothing to do with the autism and ADHD pathway’ in that they do not provide the assessment service. However, they failed to recognise that they do engage regularly with our ND community, and we know that our misdiagnosis and mistreatment are common across mental health services.

Despite this, TEWV have remained adamant that they have nothing to contribute to the discussion. Their representative even left the September CYC Health and Wellbeing Board before the Healthwatch York evaluation report about the pilot was discussed.

However, now, TEWV Community Mental Health Teams are front and centre to the new criteria. They can no longer claim this is nothing to do with them. They have made an agreement to be the ones to identify when neurodivergence might be something to explore with their patients with co-occuring mental health issues. They have taken the responsibility to directly refer them to the Retreat for triage.

We encourage TEWV to respond to our FOI requests and engage in discussion around this pathway with their patients.

If you are one of the 2700+ people who received the email and are unhappy with this situation, please make a complaint to the ICB. (You can copy us in if you like – nd@ydrf.org.uk).

Read these tips on making a complaint from the Ombudsman to make sure your complaint is taken seriously.

Telephone: 01482 957750
E-mail: hnyicb.experience@nhs.net

The Experience Team
Humber and North Yorkshire ICB
Health Place
Wrawby Road
Brigg
DN20 8GS

The ICB are currently planning an ‘engagement strategy’ they will no doubt direct you to when they respond. We suggest that the ICB spends time and resources on reading the complaints they have received, the feedback from the Do It Profiler (which we understand nobody has yet read or analysed), the blogs we have written, the Healthwatch Report, and the 140+ neurodivergent voices we have amplified, before coming to the community asking for any further ‘engagement’ just so they can tick off their Public Sector Equality Duty 8 months late.

Patient Participation Groups at your GP Practice

Every GP practice has a Patient Participation Group (PPG). We suggest joining yours, attending and explaining this situation there.

Contact your Local Councillors and MP

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

You will see from our recent legal letter that we have agreed to meet with the ICB. We want to know what you would like us to say.

You can tell us anonymously via this google form.

You can email us at nd@ydrf.org.uk

You can leave us a voicemail on 01904 326781

Keep up with everything about the autism and ADHD assessment pilot on our dedicated webpage.