Norfolk Autism Partnership Board

Meeting summary

Norfolk Autism Partnership Board Meeting Summary
Meeting Date: 28th May 2024
Venue: Microsoft Teams

What the Meeting Was About
The Norfolk Autism Partnership Board (NAPB) meeting on 28th May 2024 focused on updates regarding autism diagnosis waiting lists for adults and children, discussions about a shared understanding of Pathological Demand Avoidance (PDA), progress on the Norfolk All Age Autism Strategy refresh, and an update on a research project concerning social care for autistic adults. The meeting also addressed various actions from previous meetings, plans for future governance, and opportunities for improved service delivery.

Main Updates and Discussions

Diagnosis Waiting Lists and Demand
The Board received detailed information about the current waiting lists for autism diagnosis in Norfolk for both adults without a learning disability and children and young people. For adults, the total number of people currently waiting for an assessment was over 1,000, showing a significant increase of more than 100% from January 2020. Referrals and demand for assessments have considerably risen year on year. Approximately 204 additional assessments have been commissioned through The Owl Centre and Mind Professional Ltd, with further funding for around 100 more assessments, aiming to help reduce waiting times starting from mid-June 2024.

For children and young people, waiting list data was currently limited due to ongoing contract negotiations with providers. However, figures presented from the James Paget Hospital showed a substantial increase in demand, particularly between 2022 and 2024, with over 1,900 children and young people waiting—an increase of more than 330% since 2019 reported figures. The child and young person services are planning a redesign in 2024/25 to offer more flexible, needs-led support, improve education and care systems, and broaden commissioned assessment models to alleviate pressure on NHS pathways.

Pathological Demand Avoidance (PDA)
A shared understanding document about PDA, developed by the Diagnosis and Support working group with input from partners and diagnostic services, was presented for agreement in principle. The Board was asked to notify any objections before 30th May. It was noted that although PDA would not be explicitly named in new diagnostic service specifications, it should be regarded as part of the autism spectrum during assessments. There was some caution expressed about creating demand for services that are currently unavailable or under-resourced in Norfolk.

Norfolk All Age Autism Strategy Refresh and Delivery Plan
Board members have signed off the refreshed Norfolk All Age Autism Strategy 2024-2029, with endorsements received from several organisations including the Prison Service, Learning Disability & Autism Programme Board, and the Integrated Care Board (ICB) Public Board. The strategy is due for consideration by the Norfolk Cabinet in mid-July 2024. The Health and Wellbeing Board will be asked to adopt the strategy and encourage partner organisations to develop yearly action plans aligned with its priorities.

A clear process was proposed and agreed for ongoing delivery and monitoring, which includes organisations submitting yearly plans by the end of August 2024. Action owners will update progress bi-monthly, and a Strategy Group will meet regularly to review these updates and report progress to the NAPB. The Board also discussed the potential impact of the upcoming General Election on governance but agreed it should not delay the strategy’s implementation. There was recognition of the need to secure participation and endorsement from the Norfolk and Suffolk Foundation Trust (NSFT), particularly regarding mental health provision for autistic people.

Research Project on Social Care for Autistic Adults
An update was provided on a short-term research project focused on understanding the needs, wellbeing, and quality of life of autistic adults in Norfolk, as well as methods to evaluate the Norfolk Autism Adult Support Service. The project, supported by the University of East Anglia and Norfolk & Waveney Integrated Care Board, included an autism research group, a scoping review, and a survey that attracted 119 responses. Survey respondents identified key desired outcomes such as having control over daily life, safety nets when things are difficult, and improved health and wellbeing. Barriers to accessing support included lack of information, anxiety about services, and previous bad experiences.

The project revealed that autistic adults in Norfolk experience quality of life challenges, aligning with national data. While the research provides valuable insights, it was noted that the sample represents only a small portion of autistic people in the region and should be interpreted with caution. The Board agreed to publish the research project report on the Norfolk Autism Partnership website. There was no current plan to share the report beyond local forums. The group also discussed the importance of maintaining standard data presentation formats to support wider research comparisons.

Key Decisions, Agreements, and Actions
The meeting minutes and action log were approved by Board members.
Board members agreed to the proposed process for delivering and monitoring the Autism Strategy refresh.
The shared understanding document for PDA was agreed in principle, pending any objections by 30th May.
Additional diagnostic assessments for adults commissioned through external providers are planned to start from mid-June 2024.
The Board agreed to publish the short-term research project report on social care for autistic adults on the Norfolk Autism Partnership website.
The Learning Disability and Autism Programme Board update was deferred to the next meeting scheduled in July 2024.
The next Norfolk Autism Partnership Board meeting is due to take place on Tuesday 30th July 2024.

Next Steps
Members will continue to monitor actions such as liaising with key contacts about the Care, Education and Treatment Review updates and seeking formal responses regarding assessment compliance.
The Strategy Group will begin gathering yearly plans from partner organisations and supporting delivery monitoring, with updates expected bi-monthly.
Letters about additional assessment offers from Mind Professional Ltd and The Owl Centre will be sent to eligible adults from mid-June 2024 onwards.
The Board will follow up with Clare Angell and other relevant leads to clarify outstanding questions regarding waiting times for children and the practical application of the PINS (Partnership for Inclusion of Neurodiversity in Schools) programme.
The Autism Strategy Reference Group plans to discuss the launch of the refreshed strategy shortly after the Cabinet consideration.
The published research report will be accessible for feedback via the Norfolk Autism Partnership website.

Summary
This meeting provided important updates on autism diagnosis demand and waiting times, strategy development and governance, PDA understanding, and research into adult social care needs in Norfolk. While challenges such as long waiting lists and resource constraints remain apparent, the Board is actively working on strategic planning, commissioning improvements, and involving autistic people’s perspectives to enhance support and services across Norfolk.