Brace yourselves, this is a long one.

In response to one of the Freedom of Information requests, the Humber and North Yorkshire ICB have finally given us some information. We break down the headlines below, but if you’d like to read the documents in full, they are available on the What Do They Know website. We’d also recommend having a read of the Healthwatch report evaluating the pilot which was published 3^rd August.

The Basics

Since 27^th March 2023, adults seeking assessment for autism or ADHD in York and North Yorkshire have been told by their GP to first access an online tool called the Do It Profiler.

By answering the first four questions, people have been only deemed eligible for clinical assessment if 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.

By 13^th June, we now know that 1250 people accessed the Do It Profiler. Of this number, only 126 were sent on as eligible and are being ‘triaged’ by the Retreat to see if they can progress to the waiting list.

90% of patients have been rejected by this pilot.

Do It Profiler

All patients must fill out the lengthy online questionnaires to access a ‘report’ which gives them an indication of their neurodivergent traits. This report is claimed by the ICB to support people in accessing reasonable adjustments at work, but out of the 100 people who shared the report, only 47 found this to have been helpful. (And 577 other people who filled in the feedback form didn’t share the report with anyone).

The digital exclusion issues of the profiler being online have never been addressed. We were told primary care would support people to complete them, but this has not happened in practice. One of our community responses stated:

“I was sent profiler. I can’t do it. It too long. Too hard. Don’t understand how to do it. So now what? I asked for help filling it in and was told there isn’t any. I wish I’d never asked for diagnosis. Friend says to ignore the profiler and go to my GP again after pilot. The profiler is too hard.”

Over and over again, we come across variations of this statement:

“Information from the Do It Profiler has shown that a high proportion of people seeking referral would like support in understanding and managing their feelings and behaviours.”

From their own data, out of 617 respondents, only 81 said the reason for their referral was “Understanding behaviours/feelings/validation.” The highest scoring reason 258 people gave was “Mental health/support (social interaction, relationships, concentration, overwhelmed)”.

The high incidence of burnout, mental health issues, self-harm and suicidality in our community means we are unsurprised by this, but we are confused that someone appears to be misrepresenting the data in these reports.

On “immediate functional guidance and support”

People who are preparing themselves to approach their GP to ask for an assessment of autism or ADHD rarely go into that conversation without doing a fair bit of research. They’ve done all the online quizzes and questionnaires, they’ve read articles and books, and they have tried to implement suggested strategies in their lives. Particularly in the case of ADHD, these strategies often fail and impact considerably on mental wellbeing.

So how are people supposed to feel, when, after bearing their souls and grappling with the confusing and contradictory Do IT Profiler questionnaire, they are presented with an enormous amount of paperwork to sift through (one person counted 68 separate pdf files) to then discover such ‘helpful guidance’ as “buy a diary”, “prioritise what has to be done”, or “set goals”.

Alarming to the community, there are also blatantly ableist ideas within these pages of ‘support’. An excerpt from one titled “6 Top Tips: Empathy” talks about maintaining eye contact, recognising your own feelings, striking up conversations, recognising body language and facial expressions and seeking out opportunities for team work.

These are discriminatory ableist expectations for neurodivergent people who may struggle with alexithymia, bullied by others in their workplace or social groups, cannot recognise or display facial expressions, the list goes on. This is not supportive information. It encourages masking which has a detrimental effect on our mental health. It is frustrating that any ND resource would fail to mention the double empathy problem.

People need personalised, neurodiversity-affirming information and advice, ESPECIALLY if that is all you plan to give them.

Do It Solutions are not providing the ‘high quality service’ the ICB appears to think it is.

Pilot Extended for 9 months

We now know that the decisions to extend the pilot for 9 months were made on the 13^th and 14^th of June in North Yorkshire and York respectively. Interesting that our requests for information on next steps were rejected outright, even on 27^th June, the original end date of the pilot.

The ICBs did not release this information until the 14^th July by posting an update on both CCG websites, without informing anyone they had done so.

The reasons given for extension were:

• Changes not embedded enough to gain full benefit
• Improvements still to make
• Evaluation would need to take place after 2 months to allow time for decisions/changes to be made by the end of month three
• Full impact may not be realised
• Reduces the enablement of an evolving progressive pathway
• May attract backlogged increase in referrals from those initially not meeting the criteria

We and others had raised issues with the validity of a ‘3 month pilot’ from the outset, questioned their plans for evaluation throughout and spoke about the long term impact on the community.

Both the York and North Yorkshire groups agreed to extend the pilot based on the following ‘advantages’:

• Opportunity to develop communication and engagement and respond to the Healthwatch independent evaluation
• Carry out some co-production work in collaboration with people with lived experience
• Identifies and prioritises people most a risk
• Waiting times reduced for those meeting criteria
• Connects people with support more quickly
• Do-IT Profiler provides lifestyle and functional guidance for people with ADHD (holistic approach as per NICE guidance)
• Do-IT Profiler identifies neurodiverse traits and provides a report to drive reasonable adjustments
• Promotes self-care
• Signposts to other agencies
• Prioritises resources
• Provides valuable data for RAG rating and enables a better understanding of patients
• People will be offered the opportunity to remain on a register
• Informs future commissioning considerations
• Informs evolution of support/pathways
• Enables The Retreat to better manage the current wait list
• Do-IT Profiler offers a triage function which is time saving for The Retreat
• Time saving for GPs (less lengthy referral forms to complete)
• Reduces medication costs
• Mechanism in place to allow for referrals to be expedited
• Needs led approach instead of label led

These were contrasted with relatively few ‘disadvantages’:

• People not meeting the criteria will no longer be offered a diagnosis
• ADHD medication will not be issued without a diagnosis
• A diagnosis may entitle the patient to certain benefits – financial, educational, social – which otherwise they would not receive.

There is so much to respond to here, but this blog is long enough.

On Risk and Inequality

From the beginning, we have highlighted our concerns about the risks associated with this pilot and asked for evidence that these have been considered at any point.

We know from a previous FOI request that on 8^th November 2022, the ICB made the decision to go ahead with this pilot “with a recommendation for an Equality Impact Assessment to be developed.”

We have asked for evidence of this on several occasions and have been provided with nothing but assurances that it is ‘being developed’.

In the new documents, we can see that the meetings in June were informed that “an EQIA [Equality Impact Assessment] has also been developed and is regularly updated.” This suggests it has been completed and is being updated, but this is not the case.

The ICB state clearly in their response of 8^th August 2023 that “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. Upon full completion and approval it is intended for the information to be made publicly available via the ICB website in due course.”

The pilot activity has not promoted equality, in fact, it has done exactly the opposite, and they are aware of this.

Under the risk of Health Inequality/Equality they state: “The new criteria will mean that some individuals who would have previously received a referral for assessment and diagnosis will no longer be offered a diagnosis.”

The mitigation for this is:

• There are measures in place to ensure referrals can be expedited at any point should there be a clinical risk
• Everyone registered with the Do-IT Profiler will be offered the opportunity to remain on the register and based on their needs will be referred for an assessment or offered/signposted to appropriate relevant support
• Data from the Do-IT Profiler shows the number of people experiencing mental health issues such as eating disorders and data from the sensory profile can be used to map support activity such as executive functioning, independent living skills, time management/ organisation, dealing with anxiety and low mood and understanding local pathways to services. The aim is to develop programmes/workshops for people needing such support
• A full EQIA will be developed in consultation with people with lived experience

In our view, nothing on this list mitigates the fact that people will be refused access to assessment and diagnosis.

The mention of consultation here is, frankly, insulting to everyone.

The Ethics Panel

We were pleased that there exists an ethics panel in the NHS to oversee such impactful decisions as these. A potential space for patient rights to be centred and safeguarded. What hopes we held in setting out to read their thoughts.

Promisingly, they start out by quoting NHS England: A national framework to deliver improved outcomes in all-age autism assessment pathways: guidance for integrated care boards. 5 April 2023

“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.

Barriers to a diagnosis increase a person’s risk for poor outcomes in life, for example, late diagnosed autistic adults commonly experience multiple forms of abuse and can experience poorer mental health, suicidality or hospital admission. As a result, autistic people, and especially people without an intellectual disability, represent a significant proportion of the mental health inpatient population in England.

An autism diagnosis should always be made by clinical professionals in a health service. Delayed or unequal access to autism assessment can result in missed opportunities for support from education, social care, voluntary, community and social enterprise. In turn, this can increase the likelihood that people require restrictive and costly hospital care. That is, while broad and timely access to an autism diagnosis is costly to the health service, narrow and delayed access may be more costly still.”

Powerful stuff that they appear to immediately forget and ignore for the rest of the meeting.

They had no information at all about undiagnosed ADHD, which was barely mentioned despite an increased in requests for ADHD assessments having been the catalyst for these decisions being made in the first place.

The Ethics Panel’s take on Patient Rights

We were very interested in their consideration of patient rights, supposedly at the center of decision-making these days:

“The potential for conflict exists when some patients may feel that their right to a diagnosis is being denied. This is particularly the case in those who may already be on a long waiting list for referral to the Retreat. There have already been adverse comments in the local press from those who feel that they have been denied their rights.

These rights have to be balanced against the health professional’s duty to distribute existing resources equitably and prudently. The new policy assures that the rights of those who are the most vociferous don’t overrule the rights of those who are less assertive and might have a greater need.”

Vociferous means loud and forceful. And yes, they are likely referring to us (YDRF), which is ironic, given we’re not speaking for ourselves but for the whole ND community that they are leaving behind (remember that 90%?)

We will continue to be loud and forceful about disability rights, as that’s our whole manifesto. But we acknowledge that decision makers interpret that as challenging, thank you for your input.

Media Impact

In their discussion, we can see the impact of inappropriate and misleading media coverage of ADHD in particular. They also show once again that this is, and always has been, about money.

“Currently if a patient is on the waiting list for an assessment for ADHD or Autism, once they have been on the waiting list for more than six months, they are entitled to obtain a private assessment, which will be paid for by the NHS. It transpires that 90% of those who obtain a private referral obtain a positive diagnosis.

This highlights issues of possible medicalisation of normal traits and over-diagnosis of neurodiversity conditions. The latter has been documented in The Sunday Times May 23, 2023, and by the BBC Panorama investigation into neurodiversity diagnosis. These additional private neurodiversity assessments put a huge financial strain on available resources. Health professionals have a statutory duty to ensure that scarce health resources are used wisely and prudently. Currently this is not the case, and this proposal attempts to address this.”

They do not mention or take issue with the fact that the Retreat diagnoses 85% of people referred to them under the NHS contract, nor that providers involved in that Panorama documentary are regularly commissioned by the NHS.

Ethics Panel’s conclusion

After getting distracted wondering about how they might ethically manage resources in general, the panel came to this, fairly baffling, conclusion.

“At the core of this proposal, in ethical terms, is the balance between the rights of patients and the duties of the HP [health professional] in managing scarce health resources in a just manner.

This proposal now satisfies the principles that make up distributive justice, in that

• it follows need principles, for those with the greatest need by addressing the degree of ill health and the time scale involved
• it follows maximising principles by aiming to achieve maximum benefit to the greatest number
• it follows egalitarian principles by equalising the opportunity for all to benefit.”

On Right To Choose and Shared Care arrangements

We’ve had plenty of confusion around Right to Choose (RTC) in particular during this pilot. Individual GPs have sent off forms for some patients, which we believe are sent back when no funding appears, but perhaps there is a loophole somewhere, we don’t know.  

We were told, in no uncertain terms, that the eligibility criteria restricted RTC as well as NHS referrals. This position is backed up in the documents:

“Prior to the pilot, the use of non-routinely commissioned private providers used for assessment and diagnosis through patient choice was significant. This is likely to increase if the waiting list continues to grow under the original commissioning arrangements. These come with an additional cost pressure to the ICB and create a disparity for patients across the region. Every new referral to an alternative provider will have implications on the resources available to manage the existing waits in a fair manner.”

So now they’re worried about ‘fairness’ all of a sudden. Bit rich.

They go on to explain that if a patient decides to pursue private diagnosis at their own cost (or through RTC if that’s even possible) and looks to the NHS for a shared care arrangement around their medication, this will be refused. This means people will have to pay for ADHD medication which can cost upwards of £200 a month.

“There are no shared care agreements in place between non routinely commissioned private providers and primary care, and no local commissioning or contracting arrangements in place. This can bring implications relating to shared care protocols and the ongoing monitoring of patients who are prescribed medication. There is currently no ability to ensure the effective ongoing management of patients beyond diagnosis and initial medication.”

For the Contractually Minded

We were surprised that the ICB stated they are only now drawing up a contract with Do It Solutions.

“Due to agreement to extend the pilot a contract is in the process of being drafted.”

In response to another FOI they have stated that: “The pilot pathway is not a subcontract arrangement between The Retreat and Do-IT Solutions Ltd and, as such, no contract variation has been enacted with The Retreat.”

So the questions remain:

• How did they set up the Do It Profiler for the pilot without a contract in place?
• How was the pilot allowed to go ahead, without any of the safeguards with regard to sensitive digital information being held by an external private company?
• Why has this data already been mined and researched without consent from the patients? (They state: the Do It Profiler “provides extensive data and banding of autism and ADHD traits and characteristics on every registered user” and that they plan to use this information to create workshops.)

How safe is your data in this system?

Risks around Data Protection and Information Governance include:

• The collection of new identifiable or potentially identifiable data about individuals
• The sharing of identifiable data about individuals with other organisations
• Using data about individuals for a purpose it is not currently used for or in a new way, for example for profiling and service evaluation
• Use of data affecting the care a person receives – profiling/triaging

And their assurances of the mitigation of these risks: “a full data protection impact assessment will be completed with advice from the ICB Information Governance specialist.”

I don’t know about anyone else, but profiling people based on their sensitive mental health data feels dangerous to me.

We asked for evidence of Data Protection assurances; that the commissioned pathway meets Data Security and Protection Duties (e.g. via The Data Security and Protection Toolkit), as well as evidence of a Data Protection Impact Assessment. They responded to all saying: “the ICB can advise this is in progress as part of the contract (data processing agreement as part of the contract).”

So, they are only now considering the potential data risk and only now drawing up a contract with the Do It Profiler.

I don’t think it’s unreasonable to ask what on earth has been going on since 27^th March?

What can you do?

Support our legal campaign to challenge this decision under Judicial Review

• You can donate directly on our Crowd Justice page
• Some people were having issues with that, so you can also donate on our Open Collective page and we will transfer the money from there.

Raise awareness of this issue and our campaign on social media!

• Tag in @yorkdrf and use the hashtag #AccessDeniedND

If you have been affected by the pilot, get in touch with us

Email: nd@ydrf.org.uk

Voicemail: 01904 326781