Norfolk Autism Partnership Board

Meeting summary

Norfolk Autism Partnership Board Meeting Summary
28 September 2023

About the Meeting
The Norfolk Autism Partnership Board (NAPB) met on Thursday 28 September 2023 via Microsoft Teams. The board brings together autistic adults, family members, commissioners, health and social care professionals, and representatives from voluntary groups to discuss autism-related services and strategies in Norfolk. This meeting focused on updates about diagnostic waiting times, social care reforms, strategy development, and other ongoing work relevant to the autism community in Norfolk.

Main Updates and Discussions

Attendance and Introductions
Board members introduced themselves and confirmed no declarations of interest. Communication supports were shared, and no additional adjustments were requested. Apologies were noted from several members involved in related services.

Oversight Board Update
Adrian Grant provided an overview of the Oversight Board’s role and reminded members to review the group’s Terms of Reference. The Oversight Board has agreed on a set of priorities and plans to focus upcoming meetings on these areas to identify specific challenges. A “Live Priorities Document” is expected to be presented to the Partnership Board in early 2024.

Social Care Reform Programme – Liquidlogic Adults System (LAS) Client Portal
Rachel-Hyde Smith and Sonia Kerrison presented on the new Liquidlogic Adults System (LAS) Client Portal, part of government reforms in adult social care delayed until October 2025 due to the COVID-19 pandemic. The Portal allows people or their representatives to securely access social care information, documents, and complete financial assessments online. Accounts are optional and require email and phone access.

Currently, 127 accounts have been set up, and lessons learned include simplifying the registration process and expanding to younger users comfortable with technology. The reform team invited NAPB members and others to participate in surveys and focus groups for feedback to improve accessibility and design. It was confirmed that there will be a single login for all Norfolk County Council social care accounts, and plans are in place for a children’s version of the system to be introduced to relevant teams.

Diagnostic Update
Tracey Wooldridge provided recent data regarding autism diagnosis waiting lists:

Adults without learning disabilities have an average of 85 referrals per month, with 674 currently waiting for diagnosis, marking a 24% increase since the end of recent initiative work. Most people wait between 18 weeks and 104 weeks, with one individual waiting over 200 weeks.
For children and young people, the Norfolk Community and Health Trust’s waiting list had 5,496 children as of May 2023, with some waiting more than 200 weeks for a first appointment. The James Paget Hospital waiting list had 1,662 children, with shorter waiting times comparatively.
Work continues on reviewing pathways, referral routes, and commissioning for diagnostics, though full approval is pending. There is ongoing engagement with national groups about diagnostic waiting times.

Concerns were raised about differing waiting times between Norfolk and the Waveney area, with explanations offered regarding patient choice options during the initiative program, which included regular communication with people on the lists to offer alternative providers. A final draft policy for patient choice including neurodevelopmental assessments is in progress and guidance on private diagnostic assessments for children and young people is expected soon.

Update from Autism Strategy Reference Group
Laura Edwards updated the board on the work of the Autism Strategy Reference Group, which has prepared a “You Said, We Did” document to report on progress made under the current Norfolk Autism Strategy. The group is developing a survey and communication tools to engage wider participation in shaping priorities for the refreshed strategy.

The board discussed how best to reach and involve people in the Reference Group and asked for clarity on commitment expectations. It was agreed updates on the strategy refresh would be provided at every NAPB meeting until the work is complete, with all materials shared with board members.

Care, Education and Treatment Review Process
Tracey Wooldridge gave a brief update on the Care, Education and Treatment Review (CETR) process, highlighting a national focus on mandatory training and recruitment for involving self-advocates. At present, details remain unclear. Tracey will return to the board with further updates expected in early 2024.

Members Story – Education in School
Laura Edwards shared a video she created about the importance of having autistic role models within schools. The board praised the clarity and impact of the video. Members asked for permission to share it, and Laura agreed for it to be shared on the Norfolk Autism Partnership Board website.

Plans to distribute the video more widely were discussed, with potential support offered by another board member. Additionally, it was noted that the Anna Freud Centre offers incentives for schools completing relevant training.

Coalition for Change Invitation
The board discussed an invitation to join the Coalition for Change. Some members requested more information. It was agreed to invite representatives from the Coalition for Change to a future meeting to answer questions before the board makes a decision.

Any Other Business
Lee Gibbons announced that the contract for the new short-term adult support service, named ‘Norfolk Autism Adult Support Service,’ was awarded to Realise Futures, with referrals starting in January 2024.

Rebecca Crossley shared information about a Top Tips document developed with Family Voice regarding accessing children and young people’s mental health services.

Recruitment is underway for three ‘Navigator’ posts, who support people navigating services. The Navigators team recently won a national award for their work.

A COVID Access Clinic will open from November 2023, currently accepting referrals but not for children and young people at this stage.

Actions and Next Steps
Pathological Demand Avoidance update to be presented at the next diagnosis working group meeting on 5 October 2023.
Rachel Gates to keep the board informed about the request for autistic people to join the Learning Disability and Autism (LD & A) partnership board, acknowledging current governance review delays.
Maria Karretti to bring draft pre- and post-diagnosis leaflets to the next board meeting.
Lee Gibbons will email partnership members with an invitation to be involved in the LAS Client Portal feedback process.
Rachel Crossley and presenters to organise a presentation on the Children’s version of the LAS system for relevant teams.
Lee Gibbons to send information about Autism Strategy Reference Group involvement opportunities to Family Voice.
Lee Gibbons to invite Coalition for Change representatives to a future meeting for further discussion.
Early 2024: Tracey Wooldridge to provide an update on the Care, Education, and Treatment Review process.
Laura Edwards and another board member will explore wider distribution options for the education video.
Next NAPB meeting scheduled for Tuesday 21 November 2023 from 11:00 to 13:00 via Microsoft Teams.

Summary
This meeting provided valuable updates on diagnostic waiting times for adults and children, progress on social care reforms including a new client portal, and ongoing work to refresh Norfolk’s Autism Strategy. There was discussion about engagement, communication, service development, and collaboration to improve outcomes and support for autistic people across Norfolk. The board noted several actions to maintain momentum and promote inclusion in planning and service design.

Glossary of terms mentioned in the meeting is available separately for reference.