Norfolk Autism Partnership Board

Meeting summary

Norfolk Autism Partnership Board Meeting Summary
Date: Wednesday 31st January 2024
Location: Online via Microsoft Teams

Meeting Purpose
The Norfolk Autism Partnership Board (NAPB) met to discuss ongoing work and updates related to autism support, diagnosis, and strategic priorities across Norfolk. The meeting included presentations, updates from members and guest speakers, and planning for future actions to better serve autistic people and their families in the area.

Main Updates and Discussions

Welcome and Approvals
The meeting began with introductions and approval of minutes from the previous meeting. Members confirmed no changes or declarations of interest. Communication supports were shared in the chat, and no additional adjustments were requested.

Pathological Demand Avoidance Update
An update on Pathological Demand Avoidance (PDA) was provided by Stephanie Summers, Clinical Psychologist for the Neurodevelopmental Service. The PDA information document has been reviewed and is nearly ready to be published once minor changes are made, including adding the Norfolk Autism Partnership Board logo and training links.

Representation on Learning Disability and Autism Boards
Rachel Gates has escalated the request for autistic representation on the Learning Disability & Autism (LD & A) Programme Board to senior leadership. The LD & A Board is working to establish the right approach before inviting autistic members formally. It was recognised that autism needs a distinct forum, reflecting the specific priorities of the autistic community.

Coalition for Change Membership
The Board was asked whether it wishes to join the Coalition for Change as an organisation. A poll is pending and awaiting responses from autistic members before proceeding.

Oversight Board and Priority Document
No significant progress has been made on the Oversight Board since the last meeting. The plan is to hold meetings focused on each priority area and complete the Live Priority Document by the next meeting in March 2024.

Diagnostic Waiting Times and Service Challenges
Diagnostic updates highlighted ongoing concerns about high referral numbers and long waiting lists, especially for adult assessments without learning disabilities. On average, there are 91 referrals each month, with nearly 1,000 adults waiting for assessment—a 48% increase. Some adults have been waiting over 2 years. There has been a 70% rise in people waiting for diagnostic assessment overall.

For children and young people, waiting lists are also extensive. Norfolk Community and Health Trust reported over 6,000 children waiting for autism assessments, with James Paget Hospital listing over 3,000 children. Discharge numbers reflect outcome meetings, not necessarily diagnoses.

Commissioners have secured one-off funding intended to reduce wait times and improve assessment pathways, especially for young people transitioning to adult services. Discussions continue around redesigning the diagnostic pathway for procurement by March 2025.

A key point of discussion was the shift from purely clinical diagnosis pathways to more holistic, therapeutic approaches that focus on needs rather than labels. There is currently no adult model for this in Norfolk, and barriers exist both for autistic individuals in accessing services and for providers in offering therapeutic support due to resource limits.

Education and Support for Children and Young People
Currently, there is no formal data collection on the educational placement or status of children on the autism assessment waiting lists. Board members noted that the schools attended greatly affect the support available to children, as well as environmental factors like school buildings and resource constraints. SENCO roles are important but often lack adequate knowledge or funding. Recent budget reductions have also significantly impacted NHS capacity to meet demand.

The Board considered how it can best support addressing these challenges by raising awareness, lobbying elected officials and government for improved funding, and strengthening its position in relevant forums. Healthwatch Norfolk has shared feedback from a recent SEND event to inform this advocacy.

LeDeR Programme Introduction
Andrew O’Connell introduced the Learning from Lives and Deaths (LeDeR) programme, which reviews deaths of people with learning disabilities and autism aged 18 and over to improve health and social care. The review process aims to identify gaps and drive improvements locally, regionally, and nationally.

Key points included the eligibility criteria for reviews, the process for initial and focused reviews, and recent national statistics on causes of death among autistic adults with and without learning disabilities. Questions were raised about classification of suicide deaths and identification of autistic people in health records, which remains a challenge due to incomplete GP records. Encouragement is given for use of flags in patient records to improve accuracy.

Autism Directory and Task Group
Lee Gibbons shared plans for developing an Autism directory to provide comprehensive resources and information. The Board was invited to form a task and finish group for co-design and feedback. The plan includes five sessions, four for design and build, and one to refine based on feedback. Invitations will be sent to partnership members to participate.

Making It Real Board Representation Request
The ‘Making It Real Board’ requested autistic representation. Information will be circulated again to autistic members of the NAPB to encourage registration of interest.

Other Business
The Board was asked if it wishes to respond to a long-term dental service survey being conducted by the Integrated Care Board (ICB). The co-chairs and Lee Gibbons will meet to discuss how best to approach this.

Signposting documents for adults were circulated for feedback and approval from the partnership.

Next Steps and Actions

The Board set several action points to progress before the next meeting:

Arrange meetings focused on individual priority areas to complete the Live Priority Document by March 2024 (Lee Gibbons)
Finalise and publish the Pathological Demand Avoidance update document with correct logos and training links (Stephanie Summers)
Circulate invitations to join the Autism Directory task and finish group (Lee Gibbons, by 2nd February 2024)
Circulate information again for autistic Board members to register interest in ‘Making It Real Board’ representation (Lee Gibbons, by 2nd February 2024)
Discuss and plan the Board’s response to the dental service survey (Lee Gibbons and Co-Chairs, by 21st February 2024)
Circulate adult signposting documents for feedback and sign off (Lee Gibbons and NAPB members, by 21st February 2024)
Continue advocacy for improved funding and representation in relevant forums and government lobbying

The next Norfolk Autism Partnership Board meeting is scheduled for Tuesday 26th March 2024, 11:00 am to 1:00 pm, to be held online. Subsequent meetings are planned approximately every two months through to September 2025.

Glossary of Key Terms Used in the Meeting
The meeting minutes include a glossary explaining common abbreviations such as ASD (Autism Spectrum Disorder), ICB (Integrated Care Board), LD & A Board (Learning Disability and Autism Programme Board), NAPB (Norfolk Autism Partnership Board), and others.

Summary
The Norfolk Autism Partnership Board continues to play a key role in coordinating efforts to improve autism diagnosis, support services, and representation across Norfolk. The meeting highlighted ongoing challenges with long diagnostic waiting times, resource constraints in education and health services, and the need for holistic support models. The Board is progressing work through focused priority meetings, development of useful resources like the Autism Directory, and advocacy efforts to secure better funding and system-wide improvements. The LeDeR programme offers additional insight into health inequalities faced by autistic people, informing service development. The Board encourages involvement from autistic people in leadership and consultation roles to ensure their voices help shape local autism support services.