Norfolk Autism Partnership Board

Meeting summary

Norfolk Autism Partnership Board Meeting Summary
Date: 24th September 2024
Venue: Microsoft Teams

Purpose of the Meeting
The Norfolk Autism Partnership Board (NAPB) met to discuss updates and ongoing work related to autism diagnosis services, strategy development, reviews of care, and future projects in Norfolk. The meeting aimed to share data, review progress, hear about new initiatives, and plan next steps to improve support for autistic people and their families across Norfolk.

Main Updates and Discussions

Diagnosis Waiting List Updates
The meeting began with a report on current waiting times for autism diagnosis services in Norfolk. For adults, 74 new referrals were made in August 2024, with an average of 76 per month. The service completes about 18 assessments monthly, with 1,240 people waiting, representing a slight increase in waiting numbers since June 2024. Waiting times vary widely, with some waiting over two years.

The board discussed a "Right to Choose" option allowing referrals to private providers, which has seen a 77% increase in uptake from 2023 to 2024. This option has helped reduce waiting times and is expected to decrease waiting lists by about 13% by the end of the year. There is no fixed end date for this scheme, and contracts with private providers are reviewed regularly to ensure continued availability.

For children and young people, referrals to autism assessment services are also high. Norfolk Community Health and Care received 295 referrals in August 2024 and reported over 7,000 children awaiting assessment with varying wait times, some up to nearly four years. The Newberry Clinic at James Paget University Hospital reported over 2,200 children waiting, with average waits also extending beyond one year for many. The board noted these figures and sought clarification on the number of completed assessments, with further updates to come.

All-Age Autism Strategy Oversight Group
The board received an update on the All-Age Autism Strategy, which was approved for launch in July 2024. The new Strategy Oversight Group, including autistic adults and parent carers, has been formed to oversee and deliver the first year’s plan. This group monitors progress, highlights concerns, and supports reporting to different health and care boards.

Important dates include the group signing off the draft Year One Plan by early October 2024, presenting it to the board in November, and making it publicly available in December. This plan will be presented at the next board meeting for approval.

LeDeR Review (Learning from Lives and Deaths)
Andrew O’Connell shared a summary of the 2023/24 LeDeR annual report, which reviews deaths of people with learning disabilities and autism to identify improvements in services. Key findings include: the median age of death in Norfolk for these groups is now 62 years, matching the national average; respiratory diseases remain the leading cause of death, particularly aspiration pneumonia; and notifications to the LeDeR programme have increased by 29% due to better referral processes.

There has been progress in reducing prescriptions of psychotropic medications. For autistic people without learning disabilities, suicide and accidental deaths are the most common causes of death. The full report is publicly available online.

Concerns were raised about the inability to include individuals awaiting autism diagnosis in LeDeR reviews because of data protection laws. This issue has been raised nationally. An action was agreed for Andrew O'Connell to contact NHS England’s regional team to discuss these limitations. The forthcoming LeDeR review report will also be shared with the board when published, expected in November 2024.

Autism Centre Project
Colin Lang introduced a new proposed Autism Centre for Norfolk, designed mainly to support families with children and young people up to age 25. Motivated by personal experience, this centre aims to provide a safe space with activities and tailored resources, including soft play and sensory rooms. A site near Poringland has been identified, with ongoing planning permission discussions.

Funding of approximately £2 million will be sought once charity status is confirmed. Updates will be shared via a dedicated website and social media in the future. The board encouraged members to raise awareness and support for this project.

Other Business
The board discussed a pending visit request from a local Member of Parliament to an adult social group, noting some discomfort and the need for clarity around the visit’s intent and publicity. Replies are awaited from the MP’s office.

The Police and Crime Commissioner’s office expressed interest in joining the NAPB, and meetings are planned to explore this collaboration. A consultation on the local Police and Crime Plan is underway until early November 2024, with details shared for those wanting to participate.

The board also agreed to increase involvement fees for members contributing their time and set out a new online claims process for these payments to improve ease of use.

Terminology around autism diagnosis was discussed, particularly the use of "Autistic Spectrum Condition" (ASC) versus "Autism Spectrum Disorder" (ASD). While some organisations are adopting the term ASC to promote person-centred language, the medical diagnostic manuals still use ASD. The board acknowledged that preferred language varies, with many valuing the term "autistic person" despite the medical terminology used officially.

Key Actions and Next Steps
Clarify and update the board on the exact number of children and young people autism assessments being completed. Responsible: Lee Gibbons, by 26th November 2024.
Present the draft Year One Plan for the All-Age Autism Strategy at the next board meeting in November for approval. Responsible: Strategy Oversight Group, 26th November 2024.
Andrew O’Connell to contact NHS England regarding inclusion of people awaiting diagnosis in LeDeR reviews. Deadline: 26th November 2024.
Share the 2023 LeDeR annual review report with the board once published (expected November 2024).
Continue engagement and awareness-raising for the proposed Norfolk Autism Centre project. Volunteers encouraged.
Monitor the Police and Crime Commissioner’s interest and consultation outcomes regarding partnership with the NAPB.

Next Meeting
The next Norfolk Autism Partnership Board meeting is scheduled for Tuesday 26th November 2024, from 11:00 am to 1:00 pm via Microsoft Teams. Future meetings are planned throughout 2025 on the following dates: 28th January, 25th March, 27th May, 29th July, and 30th September.

Summary
This meeting provided important updates on autism diagnosis waiting lists, highlighted efforts to support autistic people and families, and reviewed ongoing strategic and service improvement programmes. The board continues to monitor progress closely, promote inclusive projects, and work collaboratively across local health and care systems to better meet the needs of Norfolk's autistic community.