Agenda item

To consider a paper introducing the draft Autism and ADHD health needs assessment (HNA) and setting out a proposed three phase plan for developing a strategy on the same topic.

Members considered a paper introducing the draft Autism and ADHD health needs assessment (HNA) and setting out a proposed three phase plan for developing a strategy on the same topic.

Officers provided an overview, acknowledging the points made by the public participants, apologising for mistakes made in the language of the report, and noting that offers made of help and expertise would be taken up. During the discussion it was noted that:

·       The Council and the ICB had a joint strategy duty to have an Autism Strategy, which it had been agreed would be an all-age Autism and ADHD strategy. The previous strategy had now lapsed, and it was important to get the new strategy right; a draft could be brought back to the committee at a suitable date.

·       Early scrutiny input was sought on the draft HNA, which would provide the basis for the initial conversation and consultation phase of the strategy; later phases would focus on codesign and formal consultation before publication in 2025. The strategy would be developed in an iterative way, on a cross-council basis with feedback sought from existing forums, networks and community groups on how to build an enabling society in York for autistic people and those with ADHD.

·       Several Members echoed the need for elements of the language used in the HNA to be amended to avoid misrepresentation and stigmatisation. It was noted that this would be improved and that later drafts would reflect the relevant research literature more closely.

·       Concern was expressed that while a motion agreed by Council in November 2023 referred to support for all neurodivergent adults in York, the HNA and strategy focused only on autism and ADHD; it was noted that although there were several ways a strategy could be organised, these were two areas where there was a discrete set of services and supporting charities.

·       Nationally, pathways to diagnosis varied considerably and it was acknowledged that the diagnostic picture in York in relation to waiting lists was concerning. There were also concerns around the use of online tools such as the profiler app used in the recent pilot, and the importance of enabling access to effective pre-diagnostic support was emphasised. Options were being explored for in-person, group-based pre-diagnostic support.

·       The importance of including hard-to-reach individuals and groups in the consultation was emphasised, and it was acknowledged than gathering feedback from those who did not or were unable to participate in forums and other existing networks was a perpetual challenge which was under ongoing consideration.

·       While there was relatively good data on the numbers of autistic children from the SEND team, there was a local data gap in relation to children with ADHD, where available information tended to be more around school curriculum than needs; although national datasets could be drawn on where available, while education partners had been early stakeholders in the process.

·       Concerns were raised around budgeting and monitoring of outcomes, and it was noted that there was no additional funding available to the Council to deliver what was currently funded across Children’s and Adults’ directorates, and while the ICB did have resources, these would need to be increased to meet current levels of need.

·       It was suggested that the strategy might make use of case studies of people from a range of backgrounds to better communicate issues around diagnosis to non-specialists.

·       Diagnoses from private providers would be included in a person’s primary care record providing it was a recognised diagnosis from a recognised provider.

·       This was an area where the research had moved quickly, and it was noted that there were experts and those with lived experience in York whose insights could be drawn on in developing the strategy. Several members indicated they would contact the Public Health team separately to follow up on specific questions.

Resolved:

                  i.          To note the provisional health needs assessment

presented in the annex, and request that the committee’s comments, including around the language and data used, be considered in the production of further drafts.

                ii.          To note and approve the three phase approach and the proposed timeframes to developing the Autism and ADHD strategy for York.

               iii.          To request that the draft strategy be brought back to the committee at an appropriate date.

Reason: To keep the committee updated and to ensure Members are able to input into the development of the Autism and ADHD Strategy for York.

[The committee adjourned for a comfort break from 7:31 pm to 7:38 pm].