We have been made aware of some changes associated with the autism and ADHD assessment pilot pathway in York and North Yorkshire. You can read all of the history and our actions on our dedicated webpage.
The ICB sent a letter to GPs in the region on 26th September 2023 to highlight some key changes to the process. You can read the letter on the Vale of York CCG website. We’ve commented on the letter below.
They’ve extended the pilot for a FURTHER 3 months.
According to this letter, the pilot is now due to end in June 2024 instead of March. [We hope this is a typo].
Criteria 1 has been changed.
It no longer refers to imminent self-harm and is no longer accessible through the Do It Profiler.
The text of the new criteria reads as follows:
“Direct referrals from the Community Mental Health Teams [CMHTs] for people under their care where it is identified there are co-occurring neurodevelopmental conditions and/or where the patient has support needs arising from undiagnosed neurodiverse conditions that overlap with symptoms of mental health problems; and where this creates barriers to making a diagnosis, and for the service to appropriately manage the patients’ mental health”
This means that now, you must be on the caseload of the CMHTs in order to access any assessment if your mental health is suffering.
We are aware that there are significant barriers to being referred and accepted onto these teams, and that they are already stretched beyond measure. This serves to further reduce the number of people who will be eligible for assessment and increases risk. We wonder whether the CMHTs are aware of this change and whether they were consulted prior to this decision being made.
Naturally people will now seek a referral to the CMHT by their GP to gain access to autism or ADHD assessment.
RAG rating – RED
Anyone working in healthcare will be familiar with the Red-Amber-Green method of prioritisation and it is fairly self-explanatory. Those deemed ‘red’ are seen with more urgency than those deemed ‘amber’ who are seen with more urgency than those deemed ‘green’. We see this played out in A&E for example.
The letter suggests that those who meet the criteria will be RAG rated as Red and “directly go on to the waiting list for assessment” (Waiting List 1 on our flow chart). This waiting list has been confirmed by the Retreat to be 2.5years for ADHD and 2.6years for autism.
This puts some of that ‘urgency’ and ‘prioritising those most in need’ into perspective.
However, later in the letter they say: “referrals that meet the acceptance criteria are automatically sent to The Retreat for clinical triage and if accepted, go onto the waiting list for assessment”, which means that they will actually be added to Waiting List 2 (waiting for triage) which is currently estimated at 15 months long, before getting added to Waiting List 1 (waiting for assessment) with the timescales above.
Perhaps the direct CMHT referrals will be fast tracked and the two other crisis criteria will wait those 15 months longer?
Perhaps the ICB should make this whole pathway clearer.
RAG rating – AMBER/GREEN
The letter goes on to say that “patients who do not meet the acceptance criteria will be RAG rated Amber/Green and subject to consent, can remain on the waiting list, held by the ICB, for triage/prioritisation and ongoing referral at such time capacity allows”.
Let’s take each bit of this separately as it contains a lot.
“patients who do not meet the acceptance criteria will be RAG rated Amber/Green”
As the only interaction the patient receives is through the Do It Profiler, how is the decision made to allocate them either an Amber rating or a Green rating? We have been reassured on countless occasions that the online survey does not make clinical decisions, but this clinical decision could not be made by anything or anyone else.
What would the difference be between Amber and Green in this case? What criteria are used to assess this? How would they be treated any differently?
Is it not more accurate to say that if a patient meets the criteria they are referred, and if they do not, they are not?
Why make reference to RAG rating at all when it makes no sense in this scenario?
“subject to consent, can remain on the waiting list, held by the ICB”
As we made clear in our Am I on a Waiting List? Flow Chart, this waiting list 3 is just waiting.
Unless the ICB commit resources to the assessment pathway, or you, as the patient, start being seen by the Community Mental Health Team, this waiting is meaningless.
We feel this is an attempt to pacify people to avoid complaints and to further confuse the public about whether they are on a waiting list.
“for triage/prioritisation and ongoing referral”
Triage cannot happen on this waiting list as there is no referral pathway from this waiting list to the Retreat unless a patient meets the criteria. Who would have access in order to complete triage from this list? Can GPs access this list to see the status of their patients?
How would prioritisation happen without meeting the criteria? Ongoing referral is entirely dependent on meeting the criteria.
“at such time capacity allows”
Commenting on ‘capacity’ here is hinting at the lack of trained professionals hired to complete these assessments and the lack of resourcing the ICB’s predecessors (the CCGs) committed to this pathway. They knew their actions in 2020 would drive up the waiting list but they made the decisions that led to the limited capacity issue we are facing now.
“GPs are still able to make direct referrals to The Retreat using the traditional referral form for patients who they have identified meet the criteria for assessment and/or have a learning disability.”
We are pleased to see that GPs can make direct referrals to the Retreat for neurodivergent people with learning disabilities.
ICB Working Group
Incredibly, they state in the letter that there is a working group meeting WEEKLY to “monitor the pilot”. It would be great to know what their remit is and what tools they are using to monitor the pilot. What outcomes are they measuring? Where do they get their data? Is there a way to communicate with this group? It seems like a significant resource with potential for information sharing and communication.
“It is proposed that to develop a new pathway and commissioning approach after the 9-month extension, active patient and wider public engagement and communication is integral to this work. An engagement plan is in development and the operational group is working with Healthwatch partners to design the content of this engagement”
We would suggest that the ICB spends time and resources on reading the complaints they have received, 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’.
We also suggest that the ICB pays people for any involvement so they are not exploiting an already marginalised and disadvantaged community.
We put this question to the ICB – if you have made no effort to listen to anything the community has said since March, why would people waste their time, energy and breath on repeating themselves now?
Show the community that you are listening and taking visible action based on what you have heard, otherwise your offer of ‘engagement’ is meaningless.
YDRF Legal Action
We sent a legal letter to the ICB on 19th September and received their reply on 3rd October. We will be releasing their reply and our statement about this very shortly.
There are only 4 of us doing this work and we have been taking some time to rest because this fight has been long and very hard. We have all suffered both physical and mental health consequences. We are not paid; we do this work because we believe that our community deserves better.
We are concerned that this pilot is a test within York and North Yorkshire, and if we do not stand against it, this method of rejection will spread across to other ICB areas across the country. Neurodivergent people are seen as a soft target for money saving across the NHS. Our identities are questioned and mocked in the media and in person. We should not have to constantly defend ourselves from general ignorance. We should not need to beg for basic services. And yet, here we are.
You can support us by sharing this information widely. We know that there are hundreds of affected people still unaware of how this pilot functions and believing they are on a waiting list for assessment. We want people to stand up for themselves, make complaints to the ICB, their local MP and local councillors.
We know people struggle with low self worth, imposter syndrome and being incredibly isolated before being formally diagnosed. We encourage you to connect to your community now. In our area we have the Neurodiverse York Facebook group which provides opportunities to meet other neurodivergent people in person. This can be transformative. Self-identification is valid and you will be welcomed.
You can contact us at email@example.com