Norfolk Autism Partnership Board

Meeting summary

Norfolk Autism Partnership Board Meeting Summary
Date: Tuesday 27th May 2025
Venue: Microsoft Teams
Duration: 13:00 to 15:00

About the Meeting
The Norfolk Autism Partnership Board (NAPB) met to discuss various ongoing and new aspects of autism services, strategy progress, support pathways, and community engagement within Norfolk. The meeting provided updates on diagnosis waiting lists, introduced a new Autism Intensive Support Service, explored a new community project called The Real Care Deal, and proposed a Young People Autism Advisory Group. Board members from different organisations, autistic individuals, parents, carers, and professionals joined the meeting.

Main Updates and Discussions

Diagnosis Waiting List
The Board reviewed the current adult autism diagnosis waiting list for people aged 18 and over without a learning disability. At the end of March 2025, 1231 people were waiting for an assessment. Of these, 71 had been waiting over 200 weeks, 686 between 104 and 200 weeks, 363 between 52 and 104 weeks, and 111 under 18 weeks. Only 12 assessments were completed recently, with 22 new people added awaiting assessment. Due to the absence of Tracey Walton, there were no comments on the data. The Board agreed that the Diagnosis and Support Working Group and the NAPB would decide how diagnostic data will be presented from June 1st.

Splitting of the Diagnosis and Support Working Group
A proposal was presented to split the current Diagnosis and Support Working Group into two separate groups: one focused solely on diagnostics, the other on broader support services including statutory and non-statutory support. This change was approved by the Board. Members discussed the possibility of some members attending both groups but noted most would focus on one area. Actions were set to complete terms of reference (TOR) for both groups and to find a group lead for the Support Pathways Working Group.

Autism Strategy Year One Progress
The Board received an update on the Year One progress of the Norfolk Autism Strategy. Some highlights included rapid planning of an autism event, completion of short breaks actions benefiting families, and autistic involvement in shaping activities at Bure Prison. The Board discussed but put on hold the idea of a kite mark or certification for recognising good progress, intending to revisit it at the end of the year.

Areas of concern were noted, particularly a lack of updates on mental health support actions and several school-related improvement actions. The Children’s Services senior manager responsible for education was unavailable to provide updates. The Board agreed that the NAPB Steering Group would explore possible escalation routes for these concerns, and the issues had already been raised with relevant organisations including the Integrated Care Board.

Next steps for the strategy include requesting progress updates from action owners by mid-June, reporting to the Learning Disability and Autism Programme Board in July, monitoring strategy actions through the Oversight Group, and reviewing updates at the next NAPB meeting in July. The Year Two strategy plan aims to be presented in September, dependent on organisational governance.

Autism Intensive Support Service
Joanna Smith introduced the Autism Intensive Support Service, a new pilot programme aiming to support autistic individuals aged 18 to 25 with co-occurring mental illness who frequently use emergency and urgent care services. A small team, currently three part-time staff, is providing this one-year closed pilot with a capped caseload of 15 service users to enable intensive support. The service focuses on enhancing community-based support, reducing hospital admissions, and improving care coordination.

Support includes coping strategies, assistance in navigating systems, community connections, crisis intervention, consultations, and staff training. The service will measure impact through outcome scores, reduced emergency care use, and improved personalised care packages. Future plans include opening referrals post-pilot only if a trusted assessment and safety plan are in place. The service is inclusive, supporting people with a diagnosis and those on waiting lists. Time constraints prevented all questions from being answered, so discussions will continue in future meetings.

The Real Care Deal Project
Representatives from Curators of Change introduced The Real Care Deal, a project born from an ethical framework developed with Norfolk County Council and shaped by feedback from people with lived experience of social care. The initiative aims to make social care relationships more mutual and meaningful and reflects real experiences and needs.

The project features a website (expected to launch in June 2025) designed to share lived experience stories and support ongoing learning. Content will be accessible in video, audio, and written formats, including easy-read versions and accessibility plugins that allow colour changes, screen reading, and translations. The stories will highlight both positive and ongoing challenges, with a monthly spotlight to showcase individual journeys.

The website is still being co-produced, with online learning sessions planned in June and local engagement events in July. The Board welcomed the project and agreed that the Real Care Deal team would share the website with the Norfolk Autism Forum for feedback and promotion once live.

Young People Autism Advisory Group Proposal
A new advisory group for autistic young people aged 11 to 18 was proposed to ensure their voices are directly represented in the Board’s work. The group would consist of 8 to 15 young people, meet every two months, and be facilitated by a skilled professional. Formal feedback from this group would be provided to the NAPB. Nine young people had already expressed interest. The Board endorsed the proposal and agreed to move forward with finalising terms of reference and recruitment.

Other Business and Actions
Mark Knights raised the need to raise awareness of reasonable adjustments for autistic people in general practice. It was suggested a small group be established to explore this further, and closer links made with the Curators of Change. Lee Gibbons was tasked with gauging interest and arranging related meetings.

Trevor Key announced their retirement as Co-Chair but will continue as a Board member. An update on an investigation into a malpractice query concerning Dr Shadi was pending, and Lee Gibbons is to follow up with the relevant manager. Lee Gibbons will also facilitate an introduction to Jo Royal and Laura Edwards related to the Autism Experience.

Next Meeting
The next meetings were scheduled for Tuesday 29th July 2025, Tuesday 30th September 2025, and Tuesday 25th November 2025, all from 13:00 to 15:00 via Microsoft Teams.

Summary
The May meeting of the Norfolk Autism Partnership Board focused on improving diagnostic pathways, mental health and educational support, pilot testing intensive community support for autistic young adults with mental health needs, and fostering inclusive community projects. The Board agreed structural changes to working groups and supported the creation of a young people’s advisory group. They also committed to continued oversight of strategy progress and escalation of concerns where needed. Accessibility, engagement, and lived experience remain key themes underpinning the Board’s work.