It has been 18 months since we first learned of the new autism and ADHD pilot scheme introduced by the Humber and North Yorkshire Integrated Care Board (ICB). We have fought it through legal letters and the media, we have tried to work with the ICB to engage with community concerns, we have requested key information in good faith but were denied, and now we have been dismissed by the ICB who immediately reneged on commitments made to keep communication open longer term. The pilot was quietly ended in June 2024 and the pathway made permanent. It is as nebulous and confusing as ever.
This blog has been delayed in the hope we would have clearer information to share, but this was not possible (explained below). We will summarise our work up to this point, make an attempt to explain the current pathway, and highlight our next steps.
Make a cuppa, this is a long one.
A summary of the past 18 months
When the pilot was launched, our issues were: the ICB had not completed any consultation with the ND community, there was no Equality Impact Assessment, the criteria were high risk and incentivised harm to oneself, there was a 90% rejection rate and the ICB were using a (problematic) online tool called the Do It Profiler to screen referrals.
YDRF wrote blog posts, press releases, appeared in the media, worked with Healthwatch York to communicate the impact of this decision on the ND community and produced a comprehensive report. We wrote letters to councillors, MPs, ND charities, government ministers and encouraged others to do the same. We put in Freedom of Information requests to gain access to the information the ICB refused to provide and were given partial information in response. In July 2023 we launched a CrowdJustice fund as the ICB were unresponsive to any attempt at communication. Amazingly, we raised £7000 which allowed us to send 4 legal letters outlining the issues with the pilot. All of our actions are available to read on our dedicated webpage.
The ICB agreed to meet with us in December 2023 and embarked on the consultation they were legally required to do. We worked with the ICB on focus groups, encouraged them to pay participants for their time, and allow community partners to deliver focus groups. YDRF, Neurodiverse York and Neurodiverse Catterick all held their own successful groups. The feedback from these sessions does not appear to have made any difference to the pathway itself. The main message the ICB chose to receive was the need for support pre and post diagnosis.
We worked with Healthwatch York again on a follow up report which showed that as GPs and others working within the system were seeing the problems mounting as a result of the changes and the devastating impact on the ND community. This report has not yet been published by Healthwatch York.
We met with the ICB again in April, and this time requested that the Retreat be invited which facilitated a more open discussion of the various issues. We all met again in May and were informed that the ICB were committed to having these meetings quarterly to ensure there was a point of communication for the community to feedback on how the pathway was progressing.
The meeting due to be held in June was cancelled “due to an urgent meeting”. We contacted the ICB when the pilot ended as they had still not informed us what criteria were being used to refer people onto the ‘priority’ pathway. They refused to provide this information claiming it was ‘legally privileged’. They also used this response to our FOI request.
The other meeting was due to be held on 5th September but was cancelled one week prior with the following unsigned email:
“Dear all,
I wanted to inform you that we will be standing down our meetings for the foreseeable future. As you may be aware, Humber and North Yorkshire ICB is currently undergoing a major restructure, which has led to some significant changes, including the movement of positions, redundancies and portfolio adjustments.
As a result of these changes, the responsibility for the major service developments and changes within our neurodevelopmental pathways has now been passed on to the Mental Health, Learning Disabilities, and Autism Collaborative Programme.
However, I want to assure you that small-scale changes and some of the ongoing work will continue through the Connecting Our City initiative, as well as through the work related to the new autism strategies in both North Yorkshire and York.
I appreciate your understanding and flexibility during this transitional period.”
(Note the lack of contact information for the Mental Health, Learning Disabilities, and Autism Collaborative Programme who we have not had any contact with up to this point).
We are angry but we are tired. We have had 18 months of anger, adrenaline, endless writing, effort, gaslighting, frustration, burnout and despair. Our limited energy and free labour has been used up and we will not be continuing to beat our heads against a brick wall. While there have been allies along the way, in the end, we feel the responsibility for holding this system to account has been left to us, a group of 2-3 volunteer disabled people, a fact which is neither fair nor sustainable.
Our efforts did result in some change. The high risk criteria was replaced, the rejections were stopped and a ‘waiting list’ was implemented for those who did not meet the criteria, an Equality Impact Assessment was completed, the Do It Profiler is no longer used as a screening tool, the ICB completed some consultation, and people from the ND community were paid for their time. While we were pleased that changes were made, the results were far from ideal.
We are refocusing our efforts and deciding how best to move forward. If you would like to be part of this conversation, join the ND subgroup and share the load please contact us – nd@ydrf.org.uk
This is the autism and ADHD pathway as it currently stands.
GPs and mental health teams have the option to refer patients to the Retreat for assessment for Autism or ADHD. This is called the PRIORITY pathway. The clinicians base their decision on a set of criteria which we have had no confirmation of, but assume closely resemble those used in the pilot:
- Direct referrals from the Community Mental Health Team: people under the care of community mental health teams 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.
- Risk of being unable to have planned life-saving hospital treatment, operations, or care placement.
- Imminent risk of family court decisions determined on diagnosis e. g family breakdown, custody hearing.
If a patient does not meet the criteria, they are told they can be referred through the ROUTINE pathway. There is an option to complete the Do It Profiler as something to do, but it is no longer used as a screening tool. They claim it provides ‘immediate functional guidance and support’. [Please note: we feel the advice it provides is less useful than a google search at best and harmful at worst. We also have concerns about how patient’s sensitive data is being used and managed on this platform].
The PRIORITY pathway is currently estimated by the Retreat to be 3.5 years for Autism and 3.6 years for ADHD. These are likely to be underestimates.
The ROUTINE pathway does not have a timescale because there is no resource to meet the need represented by this group. The wait is currently infinite. The ICB hopes things will change in the future. They are ultimately responsible for the wellbeing of the people on this list.
Right to Choose
As we made clear in a previous blog, the Right to Choose is available to all patients for autism and ADHD assessments. This was confirmed by Patient Choice at NHS England.
If you are planning to request a RTC referral from your GP, you should research and choose a provider in advance. Most providers have RTC paperwork for you to complete on their websites. Complete this before going to your GP.
It is important to understand the implications for ADHD medication and the restrictions around Shared Care, so discuss this with your GP from the outset. We are aware that some GP practices in York are saying that they will only agree to Shared Care with the Retreat. This means patients are added to the Retreat’s medication review waiting list (currently 18months-2 years).
ADHD annual medication reviews are completed by the same clinicians who complete the assessments for diagnosis and the reviews must be given priority. This was already an issue prior to the pilot as there were a greater number of young people being transferred over when they turned 18.
We would recommend following the work of ADHD UK on matters of medication, as there are also significant ongoing national and international shortages.
Things You Can Get Involved In
Please note: Our ND community considers that self-identification is valid and none of the opportunities below are gatekept by diagnosis. You are always welcome.
ND Community meet ups
We have two regular community meet ups in York, no need to book – just show up!
Monthly: Every second Monday of the month 7-9pm at the De Grey Building, York St John University (next one: 9th Sept 2024)
Weekly: Every Friday 2-4pm at Friargate Meeting House, YO1 9RL
We also have ad hoc events and gatherings. You can join the Neurodiverse York Facebook Group to keep up with these.
ND Parent Uprising
As a result of engagement in this work, we have been alerted to the plight of ND children and young people and connecting with parents who are frequently isolated, frustrated and distressed.
YDRF have connected with Spectrum First to deliver workshops for parents. The first of these will be on the topic of Sensory Differences and Neurodiversity. It will be an informal drop in on Friday 20th September 1-4pm at Portakabin Head Office, Huntington.
We are also currently exploring a school research project with City of York to try and change the narratives around ND and school.
Connecting Our City
The Neurodiversity and Mental Health working group meets monthly to consider the needs of the ND community in York. The group has been given £10,000 by NHS England and £5,000 from the ICB to provide support to the ND community in York. ND community members and people who work with us from social care, NHS etc are welcome to join this group.
You can join this group by emailing savanna.thompson@york.gov.uk.
The next meeting is on Thursday 12th September 1-3pm at West Offices, York, YO1 6GA.
Get in touch
Keep an eye on our social media (@yorkdrf on Instagram, Twitter and Facebook, links at the bottom of the page) to make sure you don’t miss anything.
You can also join the forum which signs you up to our monthly newsletter.
Email us nd@ydrf.org.uk
Leave us a voicemail on 01904 326781
In Case You Missed It
The Retreat Release of Post-Diagnostic Packs for Autism and ADHD
The Retreat released their support packs which they usually give people after their diagnosis. So, if you are self-identifying and/or unable to access assessment, these packs might be helpful for you.
Autism Retreat Post-Diagnostic Support
ADHD Post-Diagnostic Pack 1 of 4
ADHD Post-Diagnostic Pack 2 of 4
Thank you so much for your incredible work challenging this appalling mess. Let’s hope that an organisational restructure brings with it some people who can actually think and appreciate the impact of their actions and inactions.
It is truly devastating that the ICB has failed to engage in any further work on Autism and ADHD assessment and diagnosis with YDRF or the wider ND community in York and North Yorkshire.
It is perfectly reasonable for the small team at YDRF to stop beating their heads against a brick wall. The behaviour of the ICB and its officers towards ND people on the team demonstrates a complete lack of reasonable adjustments by the ICB.
The stalling, denial and obstruction from the ICB over the last 18 months is a continuation of the same tactics used over the last 14 years by their predecessor organisations i.e. the Clinical Commissioning Groups and before them the Primary Care Trusts. It is no accident that many of the same people involved in commissioning over the last 14 years continue to be involved today.
The culture and attitude of the ICB Board parallels the culture and attitudes that ultimately led to events such as the Grenfell Tower Fire, Infected Blood Scandal, Post Office Scandal and Hillsborough Stadium Disaster.
As Bishop James Jones wrote in his report on the Hillsborough Stadium Disaster, the culture and behaviour that has been experienced by the YDRF team and wider ND community is ‘The patronising disposition of unaccountable power’.
In stating that the topic of Autism and ADHD assessment has now passed to the Mental Health, Learning Disability, and Autism Collaborative Programme, the ICB Board has once again attempted ‘to pass the buck’. It is a tactic straight out of the Teflon school of management. It is worth noting that the Collaborative’s current strategy is dated 2021 and contains no specific actions regarding an adult autism assessment service.
Teresa Fenech, Director of Nursing at the ICB is the statutory accountable officer for autism. I struggle to recall a time when she has been held to account on the topic of timely access to autism assessments and diagnosis.
It should not be for the small team of dedicated volunteers at YDRF to hold the ICB and its officers to account. Legislation places the responsibility for scrutiny and oversight with the Scrutiny of Health Committees and Health and Wellbeing Boards of both City of York and North Yorkshire Councils. Local M.P.s and Healthwatch also have a responsibility to hold the ICB to account.
The Government and NHS England have a very clear expectation of ICBs that they will commission timely access to assessment and diagnosis and demonstrably improved autism assessment pathways for people of all ages by 2026. NHS England has given ICBs all of the evidence, knowledge and tools they need to commission a service that is compliant with NICE Guidelines and NICE Quality Standards.
For an undiagnosed autistic person their access to personal understanding, reasonably adjusted healthcare, education, social care, reasonable adjustments in the workplace, statutory protection from discrimination, and access to benefits are frequently denied – with potentially devastating consequences. The evidence shows that, with timely access to an autism assessment, those consequences are avoidable
For these reasons, it is crucial that the ICB does not restrict or withhold access to an autism assessment, either by design or by omission. 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 a learning disability, represent a significant proportion of the mental health inpatient population cared for by Tees, Esk and Wear Valleys NHS Trust.
The failure to invest in a timely and sustainable autism assessment and diagnostic pathway results in significant consequential costs not only for NHS service providers and Social Care but also for other public services and communities more broadly. The failure to invest is a gross waste of public money and must stop.
I believe the time has come for the Scrutiny of Health Committees and Health and Wellbeing Boards of both City of York and North Yorkshire Councils to urgently invite Teresa Fenech, Director of Nursing, as the autism accountable officer at the ICB, to provide an account as to why the ICB has not commissioned an all-age autism (and ADHD) assessment and diagnostic service that is compliant with NHS England guidance and NICE guidelines. Furthermore, Teresa Fenech must also provide to the Councils a plan detailing a commitment by the ICB to the required investment and a costed trajectory and milestones for an autism assessment and diagnosis pathway that will be fully operational by March 2026 and fully compliant with NHS England guidance.
I would suggest that in addition to writing to our M.P.s, we should also be writing to our local Councillors asking them to put pressure on their Scrutiny of Health Committees and Health and Wellbeing Boards to hold Teresa Fenech and the ICB to account for their actions.
The team at YDRF are entitled to their rest and to our congratulations and thanks for their tireless efforts for at least bringing the ICB to a halt and preventing any further damaging consequences from their original plans.
David McAsey