“You could be waiting forever”: managing autism assessment waiting lists
Naoise Coakley
In 2023, the York Disability Rights Forum announced their intention to bring judicial review proceedings against the Humber and North Yorkshire Integrated Care Board on the basis that its adult autism and ADHD assessment pilot pathway was unlawful. The pilot had been introduced in March 2023 in response to increasing numbers of adults seeking an assessment, a growing waiting list, and an existing system which could not keep up. Effectively, the pilot introduced narrowed eligibility criteria so that only adults who were considered ‘at-risk’ were added to the waiting list for an assessment. All other adults could be placed on another waiting list with no end date, and no guarantee of an assessment. The York Disability Rights Forum says that this pilot restricts the rights of neurodivergent people from gaining diagnosis, and may violate the right to family and private life protected under Article 8 of the European Convention of Human Rights.
Despite continued pushback from autism advocacy groups and the possibility of a judicial review claim, the Humber and North Yorkshire Integrated Care Board seem to have no plans to return to the pre-pilot format for the adult autism diagnostic pathway. However, it does not seem that a judicial review will strike at the underlying issue that the system was not working previously and was resulting in long waiting lists. In a scenario such as this, where demand outpaces supply and waiting lists continue to grow, a different approach to managing waiting lists, and those who are waiting, is sorely needed.
Autism Assessments in the UK
Autism assessment processes are at a crisis point in the UK. Figures published by the Nuffield Trust in December 2023 reported that there are currently 172,022 patients across England with an open referral for an autism assessment, the highest number ever recorded. Increased numbers of people seeking referrals for autism has been partly credited to greater awareness from the general public of autistic traits, as well as more clinicians who can provide a diagnosis. Furthermore, research has suggested that the improved recognition of autistic traits, especially amongst adults, women, and “higher functioning individuals” has underpinned these changes.
While increased recognition of autism is beneficial for many, the increase in referrals for autism assessments has outstripped the supply of assessments available. Assessment backlogs have stretched beyond the 13-week guidance period, with several areas reporting waiting times of over two years. Health authorities are struggling or are unable to meet the demand, leaving those seeking assessments in an indeterminate state for extended periods of time.
Long-term waiting without diagnosis is challenging for many people who suspect they are autistic. A diagnosis can also be extremely life-affirming, and is a prerequisite to a wide range of support including social security and housing support, as well as reasonable adjustments in higher education and the workplace. Campaigners have raised concerns about the health and wellbeing of those waiting for long durations or who are unable to access diagnosis, and research has found that undiagnosed autistic people could be at an increased risk of dying by suicide.
One area facing significant backlogs is the City of York and its surrounding areas, which falls under the control of the NHS Humber and North Yorkshire Integrated Care Board. Since March 2023, the Integrated Care Board has faced criticism for its efforts to curb the numbers of those seeking an autism diagnosis by trialling a pilot programme in York and its surrounding areas which effectively makes a referral for assessment harder to access.
The York diagnostic pathway
The pilot diagnostic pathway categorises those seeking an assessment into red/amber/green priority groups, with only those categorised as ‘red’ gaining access to a referral. Those with ‘red’ priority are reflected to be in a crisis; either they are gaining a referral directly from the community mental health team, or their lack of diagnosis is interfering with life-saving medical treatment, or a diagnosis would significantly impact a decision in the family court. However, even those considered to be priority ‘red’ face a 3.2 year wait for a diagnosis from the point of referral.
For ‘amber’ and ‘green’ patients, the programme utilises an online profiler, called the ‘Do-It’ profiler, to determine their neurodivergent traits, strengths, and weaknesses, and receive advice. People with lived experience of using the profiler shared in consultations held by Healthwatch York and the York Disability Rights Forum that the advice was ‘patronising, useless, insulting and really I can see how it could be dangerous’.
After using the online profiler, a person can request they are placed on an indefinite waiting list, held by the Integrated Care Board, which may give them access to a referral “when time capacity allows”, or if their circumstances deteriorate enough to re-categorise them as ‘red’. Therefore the vast majority of users, with many of them likely to be autistic or neurodivergent, may be stuck in a state of limbo; being told by the online profiler that they have autistic traits, but not having access to an actual diagnosis. The online profiler has, reportedly, only resulted in 15% of users actually being referred. The lack of movement from those using the online profiler to waiting lists for assessment is concerning – figures prior to the introduction of the pilot scheme suggested that approximately 85% of all referrals for an autism assessment resulted in a positive diagnosis.
The York Disability Rights Forum created a flow chart in November 2023 to illustrate the confusion of who is on which waiting list. Since this chart was published, the waiting times have increased for those on ‘Waiting List 1’ from 2.6 years for autism assessments to 3.2 years:
A flow chart created by the York Disability Rights Forum in November 2023 to illustrate the confusion of who is on which waiting list.
As of October 2023, the pilot had rejected 85% of requests for referral to an adult autism assessment. The ongoing pilot aims to prioritise adults most at need for assessment for autism, but has had the overall effect of funnelling those deemed lower priority into a never-ending state of waiting with no assessment date in sight.
Local controversy and legal action
The York Disability Rights Forum instructed Bindmans LLP in September 2023 to begin judicial review proceedings against the Humber and North Yorkshire Integrated Care Board, claiming that the pilot is unduly restrictive. The claim is challenging the procedures used to introduce the pilot, claiming it was introduced without adequate consultation, failure to comply with duties under the NHS Act 2006 and NHS Constitution, failure to adhere to statutory guidance and National Institute for Health and Care Excellence guidelines, and violation of the Public Sector Equality Duty for failing to produce equality impact assessments. The claim also states that there is potential violation of the right to private and family life under Article 8 of the European Convention on Human Rights, as well as data protection concerns. The York Disability Rights Forum has published its back-and-forth communications with the Integrated Care Board about the claim. The Integrated Care Board has generally refuted the claims and stated that the introduction of the pilot pathway was necessary, as without it, the waiting list would have had to close and there would be no provision for those awaiting assessment.
An update from the York Disability Rights Forum in April 2024 indicated that the Integrated Care Board is listening to concerns and has released support packs, usually given post-diagnosis, to the public. These packs are designed to allow those who self-identify or without a diagnosis to access information and support resources including books, websites, and videos. However, the Integrated Care Board has also indicated that, after the pilot officially ends on June 27th 2024, the pathway will likely remain similar.
Stuck in limbo: A wider problem
As evidenced by the situation in York, there is no simple solution in circumstances where demand far outpaces service capacity. York is not the only area where health authorities have attempted these types of filtering schemes; in Bristol, the group Access for Autism crowdfunded for legal action against the Bristol, North Somerset, and South Gloucestershire Integrated Care Board in response to a scheme which would only refer children for an autism assessment if they fit one of six ‘crisis’ criteria. In response to backlash, the plans were reversed.
These schemes are proving ineffective at managing the extensive waiting lists for autism diagnostic services. Those on the waiting list, and particularly those on waiting list three on the flow chart above, are stuck in a state of ‘limbo’, uncertain whether they will ever receive a diagnostic assessment and when. In York, waiting has become as much a part of the process as gaining access to the actual autism assessment. As the waiting times in York continue to increase, it is clear that just restricting access is not a successful way of managing demand.
It could be argued that the way to ‘fix’ this problem is to invest significant funds for the NHS to allocate to Integrated Care Boards to completely clear backlogs and provide more assessments. While waiting for long periods of time for an assessment is not desirable, it is also not realistic to think that waiting can be completely eliminated from the process. Waiting lists are important and necessary for managing the flow of people and resources required for public services to function, and this is especially true in health care settings. Secondly, expanding capacity through greater investment is not guaranteed to be able to reach the level of demand, or keep up with greater demand in the future. It is more than likely that even with great investment, there will still be people waiting for some length of time, and there will always be an element of waiting while accessing public services, such as waiting for appointments, decisions, and clinical results. If people are going to wait, then surely it is in the best interest of an organisation to ensure that the people waiting are waiting well – that they understand why they have to wait, they are supported through the process, and view it as fair and legitimate.
Conceptualising administrative fairness for neurodivergent people
It is clear that a different approach is needed. Instead of just asking how more assessments can be administered, which without immediate increases in funding is not practicable, Integrated Care Boards could instead be asking what they can do to balance the waiting lists and the slow access to services with the needs of those waiting. Furthermore, how can waiting lists be made as fair as possible for those waiting, so that they feel respected, heard, and fairly treated?
By taking an approach of recognising and implementing fairness into the waiting process, health authorities may be more able to promote the well being of those waiting. Current evidence suggests that fairness is perceived via judgements by the public as to whether they have been able to use their voice to share their thoughts and concerns, whether the public body acts with neutrality in its decision making, and whether those accessing services have been treated with dignity, and with respect. High levels of perceived fairness is desirable for an institution, as it bolsters the public’s perception of that body’s legitimacy, and for health bodies that often results in greater compliance with health recommendations and treatments, resulting in positive externalities for the public and the body as a whole.
In this context, understanding how fairness is perceived by those waiting for an autism assessment is valuable for designing interventions which can make waiting more tolerable and improve perceptions of fairness. It is not well understood how neurodivergent people perceive the fairness of waiting for the life-affirming diagnosis that an autism assessment can provide. Research has been carried out on the experiences of people waiting in a variety of waiting spaces, but more needs to be done specifically on the experiences of neurodivergent people. Research from the experiences of neurodivergent people has shown that they need more consideration from state actors when interacting with public authorities, and neurodivergent people experience greater feelings of uncertainty, making them more responsive to variations in fairness. There is an opportunity for research within this particular space to join together disciplines to conduct research at the intersection of administrative justice and healthcare research.
Conclusion
In York, the pilot programme’s format is likely to remain the same in a more permanent form. If this is the case, the judicial review claim may proceed, and the outcome of any decisions by the Courts could have effects for health authorities across the country. Article 8 of the Convention is a broad right, and it would be interesting to see how the argument would be presented to the courts and the impact any decision would have on criteria for eligibility and the role of waiting lists in autism assessments. In the future, whether this particular judicial claim continues or not, health authorities and the legal community should continue to watch this space.
A full judicial review claim acts as a blunt tool of identifying the boundaries of what is and is not acceptable due to the extreme circumstance at the centre of the case. Where York could be considered an extreme example of efforts to manage demand through narrowing access, the same concerns are echoed throughout the UK and across public services. In a legal sense, understanding and shaping waiting lists to function better for the neurodivergent community is a desirable action, not only as a method of avoiding future judicial reviews, but also as a way of ensuring that any duties required by the law to provide services in an equal manner are fulfilled. Understanding fair waiting for the neurodivergent person can offer fresh insights and perspectives into the ways in which public services can comply with duties to provide mental and physical health services within a context of increasing demand and diminishing capacity.
An initial version of this post was published via Essex CAJI.
