Following our blog post on the 26th March (opens in new tab), many of you have communicated with the York and North Yorkshire Health and Care Partnerships to raise your concerns about the decision to change the eligibility criteria for assessment of autism and ADHD.
We have been contacted by some members highlighting concerns and questions around the responses they have received.
One such response included a quote, reproduced in italics below, from an unnamed Commissioning Manager for Mental Health and Vulnerable Adults.
We have added our comments from YDRF in square brackets and short headings in bold.
The commissioning manager (CM) said:
Many thanks for your enquiry
Firstly, if I could make a few corrections to the report made by The York Disability Forum. [YDRF: York Disability Rights Forum]
- Waiting lists are long – CM: As at the end of January 2023 there were 1560 people on the waiting list with an average wait of 20 months. There are a further 2000 referrals with The Retreat not yet triaged. [YDRF: GPs were sent a letter informing them of the changes on 28th February 2023. In this letter it states: “1800 referrals not yet triaged will be contacted by The Retreat and given access to the Do-it Profiler and the new criteria for referral will be applied”. Given the criteria restrict access to assessment for those not in immediate crisis, it is likely the number on the waiting list remains about the same and the further referrals have been significantly reduced.]
- There are not enough assessors to meet demand, we must prioritise those most at risk – CM: Rather than a ‘funding contract limitation,’ the rationale for these changes is the unprecedented demand that has exceeded supply, resulting in unacceptable wait times and the need to prioritise resources towards those most at-risk. Previously there was no system for determining who is the most severe or with complex needs. [YDRF: Please see the final paragraph below where they describe the funding contract limitation.]
- We will evaluate the pilot – CM: In relation to ‘stemming the flow’ commissioners will evaluate the flow of referrals into the service over the next 3 months along with an evaluation of feedback from people using the new referral pathway and professionals [YDRF: The eligibility criteria will significantly reduce the number of people eligible for assessment, so the flow of referrals will obviously reduce significantly. We have not seen any coordinated, coherent or transparent plan to take feedback on board or any suggestion that the commissioners understand the concerns people are raising. Healthwatch York are completing an evaluation without being funded to do so by the ICB and their survey is not yet being distributed with the profiler three weeks into the pilot.]
People will be directed to fill in the Do It Profiler – CM: New referrals will be directly through a profiler screening tool. During the pilot, only those people who meet the acceptance criteria will be referred to The Retreat for assessment. [YDRF: Since our previous post, one of our members completed the Do It Profiler and recorded their experience in three blog posts (opens in new tab). There have also been questions raised by Elizabeth Smith (opens in new tab) about why the CEO of the tool, a neurodivergence advocate named Professor Amanda Kirby, is allowing the tool to be used in a way it is not designed for, to gatekeep access to assessment. Last week, NHS England released new guidelines on autism assessments (opens in new tab). Free2BMe therapy described in detail how this pilot contravenes many of them in this Twitter thread (opens in twitter)]
There are not enough assessors to meet demand, we must prioritise those most at risk – CM: The changes that are being introduced are due to the unprecedented demand that has exceeded supply, resulting in unacceptable wait times and the need to prioritise resources towards the most at-risk adults and children. Previously there was no system for determining who is the most severe or with complex needs. [YDRF: This is a good point, and one which we understand has been an issue for some time. However, it is important to acknowledge that the waiting list and waiting times are the inevitable consequences of the failure by the Health and Care Partnerships and their predecessors to make adequate investment in diagnostic services. Prioritising those most at risk does not necessarily remove access for everyone else, that is an active choice. Also, to our knowledge, no children will gain resources as a result of this decision.]
A confusing and misleading comment on the Do It Profiler and ADHD – CM: The Do-it Profiler is intended to provide a holistic approach to managing undiagnosed ADHD including lifestyle and environmental modifications to minimise the impact of ADHD on a person’s day-to-day life. [YDRF: It is not.]
S: NICE guidance recommends that medication is offered to adults with diagnosed ADHD if their ADHD symptoms are still causing a significant impairment after environmental modifications have been implemented and reviewed. [YDRF: This is dependent on being diagnosed in the first place. NICE guidelines for ADHD (opens in new tab) state that adults who present with symptoms of ADHD should be referred for assessment by a specialist with training and expertise in the diagnosis of ADHD.]
Go back to your GP – CM: People are advised to see their GP if they are adversely affected by not receiving a diagnosis and whose symptoms are still having a significant impact on their daily lives. The feedback and responses to the Do-it Profiler will help us in our evaluation and inform future commissioning decisions. [YDRF: With waiting times for GP appointments in York being reported to be from 4 to 8 weeks, any return visit is likely to fall outside the 3-month pilot, and so this feedback would not be included. GPs are already struggling and have raised concerns about the pilot as they understand how impactful this decision will be on an individual level. This comment also highlights the lack of understanding of how long it can take for people to make that initial appointment and approaching their GP about an autism or ADHD assessment, or the impact of invalidation, dismissal, and rejection sensitive dysphoria.]
We must prioritise those most at risk – CM: This is a pilot intended to test an approach to ensure resources reach those most in need. An approach not without precedence in health and social care. [YDRF: However, denying access to assessment entirely is unprecedented.]
We have under-invested in a service that now cannot cope – CM: In addition, if we did nothing and based on current demand, it is estimated that the number of referrals currently on the waiting list, along with those yet to be triaged, will use 90% of the contract value and take the remaining 4.5 years of the contract to complete. This means that any referrals made now would face approximately a five year wait for assessment. [YDRF: This is the funding contract limitation we mentioned earlier. In the letter sent to GPs, they also stated: “The biggest increase in referrals is for ADHD assessment, which means significant additional increase in costs for medication reviews for people who receive a confirmed diagnosis”. It is more funding that is required here, not pretending the need for diagnosis does not exist.]
We are interested that this response does not take into account any of our expressed concerns. We said in our first post that there had been:
- no risk assessment
- no engagement with the people who will be affected
- no consideration of the potential deadly impact of this decision.
None of this has been addressed.
We stated that the decision appeared to have been made purely for financial and systemic reasons, without due regard for patient wellbeing. This has certainly been disputed, both in the Press article (opens in new tab) and in the response above.
However, demand outstripping supply IS a systemic and financial issue. The ‘supply’ in this case are people qualified to assess autism and ADHD. The choice could have been made to invest in such people to meet the demand. The reasons why this was not considered are systemic and are related to budgets and financial limitations. There has still been no regard for individual patient wellbeing.
The Health and Care Partnerships are testing out a new triage/exclusion system as an experiment without any evidence-base or support from the community, denying people access to diagnosis without any safeguards in place. There is no visible recognition of risk or acknowledgement that this is likely to cause significant harm.
We are concerned that the deterioration of people’s mental health may lead to adverse consequences both for individuals and for our local mental health system. Suicide risk is significantly higher for the group being targeted for exclusion by this pilot and this risk needs to be taken seriously.
Prioritising those most at risk may be important, but it does not require others to be refused access to assessment to achieve. It also does not make moral or financial sense to wait until people are in crisis in order to support them. People are likely to seek support from local NHS mental health services which also has a cost. It would be interesting to hear if these services were involved in any consultation on this decision as they will be acutely aware of the likely impact on their services and the people who use them.
If people have no option but to seek and pay for a private diagnosis, this is likely to have severe financial implications with costs of private assessments ranging from £900 – £4,000. Many report private diagnoses are not taken seriously by statutory services. For ADHD, the subsequent and ongoing cost of the medication can be very limiting. As we are already in the middle of a cost of living crisis, this decision is likely to result in deepening debt and the increase of mental health issues and risks associated with this.
If you are refused assessment for autism and/or ADHD by your GP, there are actions you can take to have your voice heard.
Contact the decision makers directly
Phone: 01904 555999
Address: NHS Patient Relations, West Offices, Station Rise, York YO1 6GA
Phone: 01609 767607
Address: Patient Relations, 1 Grimbald Crag Court, St James Business Park, Knaresborough, HG5 8QB
Highlight your concerns
Through Healthwatch York (opens in new tab) (phone: 01904 621133)
or Healthwatch North Yorkshire (opens in new tab) (phone: 01423 788 128)
Healthwatch York have now provided a feedback page specifically for the Autism and ADHD Assessment and Diagnostic Service (opens in new tab). They also have a survey related to the Do It Profiler which they can provide online, printed out or talked through on the phone if preferred. As they are completing the evaluation, the more information they get about people’s experiences of this pilot, the better.
Contact your local councillor
Contact your local MP
Contact the current Health Minister Steve Barclay
NHS England (please note that others have been redirected to contact the ICB decision-makers directly)
We at YDRF are keen to hear from you about your thoughts and experiences.
- You can email us at ND@ydrf.org.uk
- You can leave us a voicemail on 01904 326781
- You can have your say and fill out this anonymous google form (opens in new tab)
YDRF have a Neurodivergence sub-group you can join if you would like to get involved in local disability rights action.