Norfolk Autism Partnership Board

Meeting summary

Norfolk Autism Partnership Board Meeting Summary – 30th July 2024

Meeting Purpose and Overview

The Norfolk All Age Autism Partnership Board met on Tuesday 30th July 2024 via Microsoft Teams from 11 am to 1 pm. The meeting provides a forum for representatives from health, social care, education, the police, autistic individuals, and other partners to work together on autism-related issues across Norfolk. The meeting focused on updates about autism diagnosis waiting lists, progress on the Norfolk All Age Autism Strategy 2024-2029, involvement opportunities, and presentations on care planning.

Main Updates and Discussions

Diagnosis Waiting List Update

The Board received detailed information about the current adult autism diagnosis waiting list for those without a learning disability. On average, 83 new referrals are made each month, with about 18 assessments conducted monthly. As of June 2024, 1,207 adults are waiting for assessment, representing a 121.8% increase in numbers from June 2020 when 544 were waiting.

Waiting times vary across different groups: no one has been waiting more than 200 weeks; 9 individuals have been waiting between 104 and 200 weeks; 519 between 52 and 104 weeks; 470 between 18 and 52 weeks; and 209 for less than 18 weeks. Compared to previous years, there is a clear upward trend in the demand for assessments.

A shared understanding of Pathological Demand Avoidance (PDA), a profile on the autism spectrum, has been developed in partnership with Suffolk Autism Partnership. This understanding will be reviewed annually and is intended to be shared widely with diagnostic services.

Children and young people’s diagnosis data was not available at the meeting due to ongoing contract negotiations with providers.

Autism Forum Norfolk Update

The Norfolk Autism Forum took place on 16th July 2024 with 12 attendees on the day. The Forum included updates on current activities such as the ongoing work on the Norfolk All Age Autism Strategy 2024-2029, recent training delivered by the Norfolk Autism Partnership, reminders about quick reference guides for families and adults, and news about the Norfolk Autism Directory and a photo contest.

Forum members were also reminded of several ongoing and recently closed involvement opportunities, including surveys on suicide prevention for autistic people, therapeutic practice, and physical activity preferences among autistic adults.

An open discussion session allowed participants to raise concerns and share feedback. Notably, the need for a physical “Neurodiversity Hub” was discussed as an important support service that is not just signposting but provides direct assistance, as some members feel passed between multiple services without resolution.

The group also highlighted a lack of mental health support adapted specifically for autistic people and the need for more holistic services, as well as the launch of a new Neurodiversity and Autism course for adult learners.

The next Forum meeting is planned for 22nd October 2024.

Integrated Care Board Presentation on Care Planning

Sophie Bagge from the Norfolk and Suffolk Foundation Trust presented on the co-production approach used in developing the Integrated Care Board’s Inpatient and Community Care Plan for autistic people. This model of care structure aims to ensure services are shaped by autistic people’s input.

The approach aligns with Priority 4 of the Norfolk All Age Autism Strategy 2024-2029, which focuses on tackling health inequalities for autistic people. Sophie agreed to share details about coproduction opportunities to be considered by the Norfolk Autism Partnership Board and potentially published on their website.

Norfolk All Age Autism Strategy 2024-2029

Tracey Walton and Karen Dures gave an update on the development and sign-off process for the Norfolk All Age Autism Strategy for 2024-2029. The Board members gave in-principle approval of the revised draft strategy, which has already been adopted by the Health and Wellbeing Board and endorsed by partner organisations.

A communication plan has been coproduced by the Autism Strategy Group to support the strategy’s launch on 30th July 2024, with accessible versions made available on the Norfolk Autism Partnership website. Board members were encouraged to share and promote the strategy.

To support delivery and monitoring, the existing Strategy Reference Group will evolve into an Autism Strategy Oversight Group. This group will monitor partner organisations’ plans to deliver the strategy priorities and raise concerns if necessary.

Partners have been invited to submit their plans for how they will contribute to the strategy by 31st August 2024, with progress updates to follow bi-monthly. The Oversight Group will meet monthly until October 2024 and then bi-monthly.

There are identified opportunities for autistic people, families, and carers to be involved as members of the Oversight Group, with two spaces remaining for monthly meetings via Microsoft Teams.

Additionally, the Board invited autistic people to participate in providing voiceovers for an animation summarising the strategy, to ensure accessibility and understanding.

Key Actions and Next Steps

The Board agreed to maintain contact with Tracey Wooldridge regarding updates to Care, Education, and Treatment Reviews.

Completed actions include the publication of introductions and guides to social care conversations for autism support.

Lee Gibbons will arrange for Colin Lang to speak at the next Board meeting in September about plans for an Autism Hub in Poringland, Norwich, following requests at the Autism Forum for a physical Neurodiversity hub.

Sophie Bagge will send information about co-production opportunities related to the Integrated Care Board’s care plans to the Norfolk Autism Partnership.

Partner organisations will be sent planning templates to outline how they will deliver the Autism Strategy priorities, with submissions due by the end of August 2024.

The Board will update their website with the new All Age Autism Strategy and share involvement opportunities.

The next Norfolk Autism Partnership Board meeting is scheduled for Tuesday 24th September 2024, from 11 am to 1 pm.

Conclusion

The Norfolk Autism Partnership Board continues to play a vital role in overseeing autism-related strategy, services, and engagement across Norfolk. The meeting highlighted ongoing challenges with increasing demand for adult diagnosis assessments, the importance of co-production in care planning, and the launch of the 2024-2029 Autism Strategy. The Board supports greater involvement of autistic people, carers, and partners in monitoring and delivering improvements, with forthcoming opportunities to contribute. Plans to develop a physical Neurodiversity Hub and address mental health support gaps remain key priorities for the group.