Norfolk Autism Partnership Board

Meeting summary

Norfolk Autism Partnership Board Meeting Summary
Date: 21 November 2023
Location: Microsoft Teams

Purpose of the Meeting
The Norfolk Autism Partnership Board (NAPB) met to discuss key updates on autism services, strategy refresh progress, diagnostic service challenges, and ongoing projects impacting autistic people of all ages in Norfolk. The meeting aimed to keep members informed, share data, talk through ongoing issues, and agree on actions to support Norfolk’s autism community.

Main Updates and Discussions

1. Welcome and Introductions
Board members introduced themselves via the Teams chat. Communication prompts were provided to support clear participation. There were no declarations of interest, and the minutes and action log from the previous meeting were approved. Key ongoing actions from previous meetings were reviewed, including updates related to Pathological Demand Avoidance and requests for autistic representation on other partnership boards.

2. Oversight Board Update
The oversight board is focusing on a live priority document and took a break from meetings in December 2023 to work on this. They plan to present their progress to the Autism Partnership Board early in 2024.

3. Diagnostic Services Update
There is a significant increase in the waiting list for autism diagnosis across Norfolk. For adults without a learning disability, there is an average of 88 referrals each month, with 829 adults currently waiting—this represents a 48% increase since the end of a previous initiative to reduce waits. Some adults have been waiting over 200 weeks, though this is a reduction compared to data from 2021.

For children and young people, waiting lists are also very high: over 5,900 children are waiting under Norfolk Community and Health Trust services, and over 1,400 are waiting at James Paget Hospital. Referrals average 260 and 99 per month respectively, but detailed waiting times data was not available. A project group has been set up to support transition and ensure no adverse impact from transfers between child and adult autism diagnostic pathways.

Members discussed whether assessment rates might increase, with some progress made through increased recent throughput and potential new funding being explored, though no definite timeline was given. The group also highlighted concerns that GPs and health professionals may not be fully informing patients about their rights to choose diagnostic services, which could affect waiting times.

A request was made for more data on completed assessments for children and young people, although this is not routinely recorded and would require manual collection. An action was agreed to meet with commissioners of children’s diagnostic services to clarify what data is available and needed.

4. Update From the Autism Strategy Reference Group
This group includes autistic adults, Norfolk County Council representatives, and a member from NAPB. Its role is to co-design autism-friendly communication tools and support engagement to refresh the Norfolk All Age Autism Strategy.

Achievements include creating accessible online documents and animations, and distributing questionnaires and workbooks to gather input from autistic people and their families. Engagement figures show a 50% email open rate and positive social media interaction, with 137 questionnaires/workbooks completed so far.

The group plans to analyse this data and organise library and in-person sessions to check its findings. Carers Voice has offered to help represent carers’ perspectives in this work. Mental Health Commissioners have been invited to contribute to the strategy refresh. The refreshed strategy will ask partners how they plan to deliver the priorities identified.

5. Update on Short-Term Service Research Project
Norfolk County Council received funding from the Integrated Care Board to research the Norfolk Autism Adult Support Service, delivered by Realise Futures. The project runs from October 2023 to March 2024 and aims to identify suitable tools to measure autistic adults’ wellbeing. This will help evaluate the current service and support bids for longer-term research funding.

A Research Advisory Group, including five autistic people and others from Norfolk County Council and the University of East Anglia, will oversee the project. They will develop and test a friendly online questionnaire, assess how best to engage autistic people, and find ways to report results back to participants. The first meeting took place on 29 November, and meetings will continue monthly via Microsoft Teams.

Questions were raised about how wellbeing will be scored, with plans to use mixed qualitative and quantitative methods to assess overall quality of life. Although no current actions were identified for the Partnership to support this project, further exploration was suggested. A brief update on progress is expected in January 2024, though this may be postponed.

6. Coalition For Change Presentation
Tracey Jones joined to talk about the Coalition for Change, which was set up following a Serious Adult Review after the Cawston Park incidents in 2021. The coalition aims to embed the principle ‘Homes not Hospitals’ into services and commissioning both locally and nationally.

The Coalition includes a range of organisations and individuals, including advocacy groups, health board representatives, MPs, and others. They seek to work collectively to lobby, campaign, and support service standards or legal changes affecting people with learning disabilities and/or autism, especially regarding behaviours that challenge.

The Norfolk Autism Partnership Board was asked if it wishes to join the Coalition as an organisation. Members will be sent a poll to vote on this. There was interest in having self-advocates involved, particularly those with experience of locked or secure care provision. The Coalition also plans to engage with young people and families during service design and share national and Norfolk best practice.

7. Reference Guides and Briefings
Maria Karretti presented a co-produced reference guide for families and children in Norfolk and Waveney. The guide outlines support services families can access and that professionals can use for signposting. Suggestions were made for broad distribution, including GP surgeries, schools, health care settings, and community hubs, in both digital and paper formats.

Currently, there is no equivalent guide planned specifically for adults, though some resources in the guide are relevant to adults and might be useful for GPs. The Diagnostic and Support Working Group will consider developing something similar for adults.

Maria also presented a 7-minute briefing on autism and mental health, which was well received. Minor wording feedback was addressed, and the briefing will also be made available on the Norfolk Autism Partnership website.

8. Any Other Business
The Partnership has been contacted about work experience opportunities for an autistic student. An action was agreed to find out the student's interests to help identify suitable placements. It was also suggested to contact local employment services for ideas or suggestions.

Next Steps and Closing
The next Norfolk Autism Partnership Board meeting is scheduled for Tuesday 30 January 2024 via Microsoft Teams. Further meeting dates for 2024 and early 2025 were shared. Actions arising from this meeting include clarifying diagnostic assessment data for children, sending a poll about joining the Coalition for Change, sharing reference guides on the Partnership’s website, supporting the student placement enquiry, and monitoring ongoing projects such as the strategy refresh and research work.

This meeting summary aims to provide clear, accessible information on the ongoing work of Norfolk Autism Partnership to support autistic people, families, and professionals in Norfolk.