Norfolk Autism Partnership Board

Meeting summary

Norfolk Autism Partnership Board Meeting Summary
Date: 26th March 2024
Venue: Microsoft Teams

Purpose of the Meeting
The Norfolk Autism Partnership Board (NAPB) met to discuss ongoing issues and developments relating to autism services and support in Norfolk. The meeting included updates on diagnostic services, social care information, policy consultations, and strategy development, with input from board members, commissioners, autistic adults, family representatives, and professionals.

Main Updates and Discussions

Welcome and Minutes
The meeting began with introductions and the approval of previous minutes and action logs. Members confirmed no conflicts of interest. Communication aids were provided through the Teams chat, and no adjustments were requested.

Co-Chair Updates
Adrian Grant reported his involvement in meetings on autism and suicide prevention, highlighting that a working group is being formed to explore links between autism and suicide, as well as challenges in recording autism diagnoses accurately. He also noted a review is planned of mental health services to assess their suitability for autistic people, addressing concerns about service alignment and disengagement.

Trevor Key shared his attendance at the Adult Safeguarding Board, a Charging Reference Policy Group, and his role as a lecturer and expert by experience at the University of East Anglia.

Diagnostic Services Update
The board received an update on adult autism diagnosis services. There are approximately 92 referrals each month, with about 1,041 adults currently waiting for assessment. On average, 17 assessments are completed monthly. Waiting times vary, with a small number waiting longer than two years, some between one and two years, many between 18 months and one year, and others less than 18 weeks.

Commissioners are working with children and young people’s services to provide a system approach to autism assessments for those transitioning to adult services. Funding has been identified for 2023-24, with efforts to offer earlier assessments through external providers to reduce waiting. Discussions on commissioning services from March 2025 are ongoing.

Questions were raised about the timing of additional funding, which may be available within a few months. Members also asked if the NHS offers financial support for private diagnoses, citing a scheme in Hampshire, but Norfolk does not currently have such a model. Further inquiry into that scheme will be made.

Concerns were noted about recent information related to a Dr Shadi and adherence to NICE compliant diagnostic guidelines. Affected individuals are expected to receive letters from Norfolk County Council, and a formal response from relevant commissioners will be sought.

Learning Disability and Autism Programme Board
The board continued discussions about whether NAPB should have representation on the Learning Disability and Autism (LD & A) Programme Board. There was agreement that representation is appropriate, but progress in securing this is delayed due to restructuring within the Integrated Care Board (ICB). An action was noted to seek expected timeframes for this from RG, a member working with the LD & A board.

There was some confusion among members about the specific roles of the LD & A Programme Board compared to the Norfolk Autism Partnership Board. It was explained that the LD & A Programme Board manages and delivers services for autistic people and those with learning disabilities. An action was agreed for Lee Gibbons to arrange a presentation to clarify the purpose and structure of the LD & A Programme Board for NAPB members.

Social Care Conversations
Laura Edwards presented work from the Autism Social Care Reference Group, which has developed two documents to help autistic people prepare for meetings with Adult Social Services. These include a two-page introduction and a longer guide with space for notes.

The board agreed to publish these documents on the NAPB website and share them with social care teams via the Norfolk County Council intranet. The guides can be sent to individuals before their meetings and are suitable for both in-person and phone assessments.

A question was raised about developing similar guides for Children’s Services. Karen Dures will investigate the possibility and provide feedback at a future meeting.

Charging Reference Policy Consultation
Claire Sullivan and Susanne Baldwin from Norfolk County Council joined the meeting to discuss a consultation on charging for non-residential care packages and the Minimum Income Guarantee.

Key points from the discussion included the importance of including the voices of affected individuals, considering a phased or tapered introduction of any new charges to reduce impacts, ensuring no backdating of charges, and increasing transparency around the consultation and the history of the Minimum Income Guarantee. It was noted there is no option in the consultation to maintain the current arrangements without change.

An action was agreed to set up a group to review the consultation in detail and develop a group response if needed. The consultation closes on 19th May 2024.

Norfolk Autism Strategy Refresh
The Autism Strategy Group is drafting a refreshed Norfolk All Age Autism Strategy. An extra-ordinary meeting is planned for 30th April 2024 to gather feedback from members on the draft strategy and discuss delivery through an annual plan. The strategy will then proceed to partner organisations for governance and sign off.

Members were asked to read the draft, consider methods for delivering the strategy, and think about how to launch the refreshed strategy. The draft strategy will be shared with all members on 16th April 2024.

Any Other Business
It was acknowledged that Autism Acceptance Week (2nd to 8th April 2024) had limited planned events for adults. The board was encouraged to be more proactive in planning events for Autism Acceptance Week 2025. Details of planned events can be found on the Norfolk County Council website.

Actions and Next Steps

Rachel Gates is to provide feedback on representation of NAPB on the LD & A Programme Board.
Lee Gibbons will maintain contact with Tracey Wooldridge regarding the Care, Education and Treatment Review updates.
The Norfolk Autism Directory invite has been sent; the official launch may be delayed beyond Autism Acceptance Week 2024.
Karen Dures will inquire about producing social care conversation guides for Children’s Services.
Lee Gibbons will publish the autism social care conversation documents on the NAPB website and distribute these to social care teams promptly.
Lee Gibbons will arrange a presentation to clarify the LD & A Programme Board’s role for NAPB members at the next meeting.
If needed, Lee Gibbons will establish a group to respond to the charging reference policy consultation before the 19th May deadline.
Lee Gibbons will send the draft autism strategy to all members on 16th April for review before the extraordinary meeting on 30th April.

The next Norfolk Autism Partnership Board meeting is scheduled for Tuesday 30th April 2024, from 11:00am to 1:00pm via Microsoft Teams.

Summary prepared for public information based on minutes of the Norfolk Autism Partnership Board meeting held on 26th March 2024.