Agenda item

Matthew Tait (BOB Integrated Care Board Chief Delivery Officer) has been invited to present a report on Adults Autism and Attention Deficit Hyperactivity Disorder services in Oxfordshire.

The Committee is invited to consider the report, raise any questions and AGREE any recommendations arising it may wish to make.

Matthew Tait (BOB Integrated Care Board Chief Delivery Officer) was invited to present a report on Adults Autism and Attention Deficit Hyperactivity Disorder services in Oxfordshire. Niki Cartwright (Director of Delivery, BOB ICB – Mental Health, Learning Disability, SEND and community), and Dee Nic Sitric (Chief Executive of Autism Champions) also attended to support the Committee and answer their questions.

The BOB ICB Chief Delivery Officer introduced the Adults Autism and ADHD services item by highlighting the significant pressures on access and waiting times, the complexity of the market, and the financial challenges, noting that these issues were not unique to Oxfordshire.

The Director of Delivery explained that Autism and ADHD services were paused due to high demand and noted plans for transformation programmes with input from those with lived experience. The Chief Executive of Autism Champions supported the involvement of lived experience in service design, praised the collaborative ADHD programme, but raised concerns over limited progress and engagement in the autism strategy.

Members discussed the following questions and concerns with officers:

• What immediate steps could be taken to reduce the waiting lists for adults autism and ADHD services. The BOB ICB Chief Delivery Officer responded that there were no specific short-term measures available to rapidly reduce the waiting lists, explaining that while the right to choose market had improved access, the exponential increase in demand meant waiting times would likely not decrease quickly. He emphasised that the solution lay in a long-term transformation programme, improved contractual frameworks, and national support, rather than any quick fixes.

• Why Autism assessments had been capped at 110 per year and whether any modelling had informed this figure. The BOB ICB Chief Delivery Officer explained that the cap reflected the level of activity that could be provided within the existing contract funding, rather than being based on modelling, and the Director of Delivery confirmed it was determined by what the provider could deliver within the financial envelope, noting that this approach might need to be reconsidered as demand increased.

• What support and communication available to people with Autism and ADHD was provided while services were being developed. The Director of Delivery explained that people were signposted to a range of local voluntary sector services and that a future community offer was being developed to provide accredited support options.

She added that communication with those on waiting lists had been limited until there was clear information to share, but ongoing engagement workstreams would address this. The Executive Director of Autism Champions also highlighted the importance of moving away from a purely diagnostic approach and focusing on meeting needs, suggesting that the ADHD transformation pathway considered how to support people without requiring a formal diagnosis.

• Concerns were raised about the Shared Care Fund for ADHD, how well it was working, and the rate of GP engagement. The Director of Delivery explained that the new Shared Care protocol had only recently been signed off, with increased annual funding and plans for advice, guidance, and training to help GPs feel confident in prescribing. She noted that GP participation in shared care was voluntary, and not all were currently engaged, but the changes were expected to improve uptake.

The Executive Director of Autism Champions emphasised that the agreement was a significant achievement resulting from collaborative work, and the BOB ICB Chief Delivery Officer added that it was a foundational step for future progress in the system.

• Whether having a formal diagnosis of ADHD or autism was truly valuable, or if resources should instead be focused on developing strategies to help people regardless of diagnosis. The Executive Director of Autism Champions responded that while a diagnosis could be important for those needing medication or personal understanding, the system should move towards meeting needs without requiring a formal diagnosis.

She explained that the ADHD transformation programme was considering access criteria to prioritise those who most needed a diagnosis, but ultimately aimed for a model where support was available based on need rather than diagnosis alone. The Director of Delivery added that the future community offer would provide resources and support options for all, not just those with a formal diagnosis.

The discussion included a point about reasonable adjustments in the workplace, where the Executive Director of Autism Champions clarified that, legally under the Equality Act, reasonable adjustments should be needs-led and not dependent on a formal diagnosis. She emphasised that employers are required to provide adjustments based on an individual's needs, and that the definition of "reasonable" may vary between individuals and employers. The conversation highlighted the importance of understanding and supporting each person's requirements, regardless of whether they have an official diagnosis. 

• Whether the Right to Choose Scheme in Oxfordshire only allowed access to private routes for those who could pay, or if it was available through the NHS. It was clarified that Right to Choose was indeed available to all via the NHS, not just privately, and that NHS-funded private Right to Choose expenditure in Oxfordshire had risen significantly, making the current model financially unsustainable.

• Concerns were raised about the underdiagnosis of Autism and ADHD in women and minorities, as well as the complexities faced by those with additional conditions like epilepsy, and how coproduction addressed these issues. The Director of Delivery and the Executive Director of Autism Champions explained that there was significant research on the negative impact of delayed diagnosis, especially for women and underserved groups, and that the service aimed to improve inclusion and coproduction with diverse communities.

The need to join up learning from deaths, such as through the People with a Learning Disability and Autistic People (LeDeR) programme, and to ensure that complexity and intersectionality were considered in service design and commissioning intentions, was also highlighted. 

• The extent of the planned introduction of AI tools, including how they would be used, monitored, and whether they would involve self-referral or triage. It was explained that the use of AI was still in the exploratory stage, with no trials underway yet, and that the main focus remained on stabilising services and implementing shared care protocols. The ambition was for AI to eventually support self-referral and provide tools for those waiting for diagnosis or needing support, but any implementation would be at least two years away and would prioritise supporting daily life rather than direct diagnosis.

• How the new access criteria for ADHD would help prioritise complex cases and manage demand. Officers explained that the access criteria aimed to ensure those most in need, particularly individuals requiring medication, would be prioritised for diagnosis and support, while others might be directed to community or digital support. The criteria were nearly finalised and intended to balance limited resources with the needs of the population, with implementation expected in the short term as part of the commissioning framework and service redesign.

• Concerns were raised about addressing inequalities, the All-Age Autism Strategy, and the challenge of engaging schools, especially given their independence. The BOB ICB Chief Delivery Officer answered that efforts were underway to introduce a needs-led approach, with ongoing discussions between education and health colleagues to support early intervention in schools. While a programme was already in place in another part of the region, Oxfordshire was beginning to adopt similar strategies, aiming to skill-up school staff and intervene early to prevent escalation. It was acknowledged that this required a cultural shift in how behaviour was viewed in schools and that further work was needed to ensure all relevant communities were included in co-production efforts.

• How monitoring and evaluating would be approached for the ADHD Transformation Programme and the Autism strategy. The Executive Director of Autism Champions answered that this was a work in progress, but monitoring and evaluation would be built into the ADHD programme during implementation, and the All-Age Autism strategy would include annual reviews of progress and barriers, rather than waiting until the end of a five-year plan. This could ensure continuous assessment and improvement.

The Committee AGREED to issue the following recommendations:

1. For the ICB to urgently review and increase the annual assessment capacity for both Autism and ADHD services to better reflect current demand and reduce potentially unsafe waiting times.

2. For the development of a detailed timeline (and potentially a resource plan) for clearing the existing waiting lists, including the 2,229 adults awaiting ADHD assessments.

3. To undertake a formal review of Right to Choose (RtC) expenditure and its long-term viability, with options for integrating RtC providers into core commissioning.

4. For coproduction to remain at the heart of the development of the All-Age Autism Strategy. It is recommended that there are clearly identified stakeholders to ensure that all complexities are represented.