The efforts of the Connecting Our City Project Team have been extensive in trying to make this project work in incredibly difficult circumstances; they have suffered greatly for their empathy and integrity. This letter is not addressed to them, but to the leadership.
The first meeting of what was then called the ‘Autism Working Group’ was held on 9th June 2021. The group later changed its name to the Neurodiversity and Mental Health Working Group to acknowledge that autism was not the only neurodivergence (ND) the mental health system was failing.
After almost two years, we believed progress had been made and commissioners were finally ready to take action to benefit the ND community in our February 2023 meeting.
However, when we attended the meeting on the 20th March 2023, we were informed of the secret and sudden decision the commissioners had taken to begin a 3 month pilot 7 days later to deny vulnerable neurodivergent people access to assessment, diagnosis and treatment. In this meeting, when the significant risk of suicide in both the autistic and ADHD communities, especially when undiagnosed, was raised, the commissioner shrugged and stated it was a “contractual issue”.
When, on 9th May we had another meeting of the working group, we were provided a presentation by one of the commissioners who had been central to the decision making involved. Members of the York Disability Rights Forum, Healthwatch York, York ND Partnership, local social prescribers and YaaaG rightly asked some difficult questions of this commissioner, pointing out the inconsistencies and lack of information on some key areas such as risk and digital exclusion.
One of the Mental Health Partnership co-chairs was present for this meeting and stated that the commissioner was “just a messenger”, “not responsible for these decisions”, “having to deal with some very difficult questions” and “should be thanked for her time”. This showed how little she understood about the history of the group, the centrality of the commissioner to both the ND working group and the decisions that had been made, and how appropriate and necessary our challenges were in context. This comment made the leadership of the Connecting Our City project appear to be fawning to the power of the ICB, valuing a commissioner’s time over ours, and effectively alienating the lived experience community from the project leadership.
The ND working group meeting due to happen on Monday 12th June was cancelled last minute on Friday 9th June. Though we are now aware that the decision was made to extend the pilot on the 13th and 14th of June, our request for information following the cancellation was denied on several occasions up to and including the date the pilot should have ended, 27th June, when the commissioner finally responded with:
“As we reach the end of the three month Do-IT Profiler pilot, health leaders in York and North Yorkshire have been considering next steps in developing a service model for adult ADHD and autism assessment which best meets the needs of our communities. We will be able to set out next steps shortly, including an extension to the Do IT Profiler pilot and how we will work in partnership with people with lived experience to develop our approach for the future.”
The next working group meeting due to happen on 24th July was also cancelled, but at this point, it was clear that the commissioners were actively refusing to listen, and there would be little point in gathering a meeting to knock our heads once again against the same brick wall. Since then, we have been informed that the group has been stepped down entirely, with some vague plans for TEWV NHS to take over even though they have consistently distanced themselves from this topic and have refused to collaborate with the community on these issues.
The free emotional, research and educational labour provided by members of the local ND community has been exploited without gain for over two years now and there is no goodwill left to draw on. If the ICB wishes to engage in consultation in the future, they should be prepared to pay the ND community as consultants to ensure they value their contributions.
The exclusion of the ND working group from the recent ‘Connecting Our City Celebration Event’, the fact that members of the ND group have not been included in recent email chains, and the utter silence on this issue across Connecting Our City communications has shown how little our labour is honoured, and makes a mockery of the notion that this project has been ‘doing things differently’ and ‘centering lived experience’.
When representing the Connecting Our City project, spokespeople suffer from what could be considered ‘toxic positivity’: they seem unable or unwilling to acknowledge the areas in which the project is failing and harming people and therefore unable to understand or evaluate the project in any meaningful way. It sounds, to those of us having a very different experience, to be avoidant at best and gaslighting at worst.
We have been frustrated by the lack of recognition of the demonstrable failure of the Connecting Our City project to change how commissioners have made these decisions. Despite two years of “collaboration”, when they came across a difficult situation, they chose not to use the forum gifted to them by this project, or their connections to the ND community to coproduce a solution, but to do what they have always done – make decisions behind closed doors and inform the people affected after the fact. Our reasonable challenges to their lack of risk assessments, consultation and data protection have been described as “vociferous” in their documentation and clearly they are inconvenienced by being informed of the consequences of their decision on people’s lives.
In light of recent updates regarding a period of review for the Connecting our City project, we call on senior leadership to acknowledge and address the significant damage the management of the programme has caused to both its own staff and the wider community it serves. We ask that they take some time to pause and reflect on the information laid out in this letter.
We encourage them to acknowledge publicly that the project has caused harm and casualties along the way and that they are committed to learning from these experiences to better represent the whole of the project, rather than just the things that look good.
We ask that the leadership also use their power to insist on accountability and transparency within the newly formed ICB to show their solidarity and support for the people with lived experience who have gifted their time generously over the past two years.
Hilary Conroy (ND&MH; Physical Health&MH working groups)
Alice Etherington (ND&MH working group)
Hazel Kerrison (ND&MH; Physical Health&MH; Eating Disorder&MH working groups)
Payson Muller (ND&MH working group)
Wendy Fleming-Smith (ND&MH working group)
Dr Jonathan Vincent (ND&MH working group)
Roger Tuckett (ND&MH working group)
Helen Jones (Physical Health&MH working group)
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