Norfolk Autism Partnership Board

Meeting summary

Norfolk Autism Partnership Board Meeting Summary
Meeting Date: 18 July 2023
Held Online via Microsoft Teams

Purpose of the Meeting
The meeting focused on updates and ongoing work related to autism services and support in Norfolk. Key topics included diagnostic waiting times, co-production opportunities, updates from related boards, and the procurement of Talking Therapies services. The Board also discussed plans for involving autistic people and carers in shaping services and strategies, and addressed some administrative and operational matters.

Main Updates and Discussions

1. Diagnostic Waiting Times
The Board received an update on adult and children’s autism diagnostic waiting times in Norfolk, reported by Tracey Walton.

For adults as of May 2023, there was an average monthly referral rate of 16.5 individuals, with around 634 adults waiting for assessment in March 2023. In the past 12 months, 1,067 assessments have been completed, split between the Autism Service Norfolk and independent providers. The waiting times varied, with some adults waiting under 18 weeks and others waiting over 200 weeks. However, the figure for those waiting more than 200 weeks was considered not fully accurate as it includes people who disengaged and later re-engaged with the service.

For children and young people, two services provided data: Norfolk Community Health and Care Trust (central and west areas) and James Paget Hospital. As of May 2023, approximately 5,496 children were on the waiting list at Norfolk Community Health and Care Trust, with an average of 150 referrals monthly. Many children were waiting over a year for their first appointment. At James Paget Hospital, there were 1,137 children waiting, with fewer waiting over a year compared to Norfolk Community Health and Care Trust. About 20% of the children referred for neurodevelopmental disorder assessment were predicted to require an autism assessment.

2. Co-Production Opportunities
The Board discussed several planned co-production projects designed to involve autistic people, their families, and professionals in service design and strategy development. Co-production means working together to make changes and improvements, ensuring that services meet the real needs of people.

Co-production will be used in several areas, including:
Refreshing the Norfolk All Age Autism Strategy, with an Autism Strategy Reference Group forming between July and December 2023. Activities will include creating easy-to-understand communications, developing an autism-friendly questionnaire, and helping identify strategy themes. Wider engagement is planned from October 2023 to February 2024.
Re-engineering adult autism diagnostic pathways to reduce long waiting times and improve support. Co-production will explore awareness, support needs, and new diagnostic models which might include self-service or hybrid approaches.
Developing an Autism Research Reference Group to support the evaluation of a new short-term autism service. This group will oversee research from October 2023 to March 2024. There will also be opportunities for broader involvement via questionnaires and interviews.
Producing better information for autistic adults before social care assessments through an Autism Social Care Reference Group. This group will review current information and help create new resources for practitioners to use before assessments.

Involvement fees will be offered for those participating in certain reference groups, with rates linked to the time spent involved. Reasonable expenses, for example travel costs, can be claimed.

3. Learning Disability and Autism (LD & A) Programme Board Update
Rachel Gates provided an update on efforts to improve the involvement of autistic people in the LD & A Programme Board, which covers both learning disabilities and autism. There is a concern that autism issues are sometimes overshadowed in discussions that include both groups. The board is working on drafting terms of reference to ensure autistic people can participate meaningfully. Discussions are ongoing about how to separate autism topics effectively within the LD & A board meetings. The Board requested an update on this progress at the next meeting.

4. Talking Therapies Service Procurement
Diane Smith spoke about the upcoming renewal of the contract for the Talking Therapies service (also called the Wellbeing Service), which provides support for anxiety and depression for people aged 16 and over. The current contract, running since 2008, is due for renewal in 2024.

Consultations are underway with the public, service users, and professionals about how the service can be improved, influencing areas such as how people access the service (phone, online, face-to-face), communication, and accessibility. The service cannot change the range of conditions treated, the treatment types offered, required training, or data reporting structure, as these are set nationally. Several surveys have been launched to gather feedback, with the public survey open until July 2024.

5. Other Updates and Actions
The Board discussed the Oliver McGowan Mandatory training for learning disabilities and autism. Lee Gibbons is involved in supporting the roll-out and has applied to be a trainer. A meeting has been arranged to help facilitate face-to-face training delivery.
The first Oversight Board meeting took place in July 2023, focusing on priority areas such as adult social care assessments, mental health support, employment support, diagnosis, and lived experience in schools.
Trevor Key asked the Board to support gathering case studies related to social care assessments and financial assessments for a Charging Reference Group.
Laura Edwards, an autistic adult Board member, requested opportunities to present at future Partnership Board meetings alongside professionals presenting. This was agreed to be arranged.
Board meeting dates for 2024 and beyond were to be circulated soon.

Key Decisions or Agreements
The Board approved the minutes and action log from the previous meeting.
The Board agreed to place on hold the action to add information about autism organisations to the partnership’s independent website, while better options are explored.
The Board agreed to support co-production efforts across autism strategy refresh, diagnostic pathway redesign, research evaluation, and social care information development.
The Board requested a progress update on autism involvement in the LD & A board for the next meeting.
The Board agreed to facilitate a presentation from Laura Edwards at the next meeting.

Actions and Next Steps
Tracey Walton and Rebakah Muttitt to discuss Pathological Demand Avoidance update at the next Diagnosis working group.
Rachel Gates to follow up with the LD & A Programme Board on autism involvement and report back by 19 September 2023.
Lee Gibbons to arrange a presentation slot for Laura Edwards for the 19 September 2023 meeting.
The research funding bid decision for the adult autism short-term service evaluation expected by the end of July 2023; even if unsuccessful, evaluation activities will continue.
Autistic people and carers interested in co-production opportunities are invited to join the various reference groups as outlined in the meeting.
Board meeting dates for 2024 to be circulated shortly.

Next Meeting
The next Norfolk Autism Partnership Board meeting is scheduled for Thursday 28 September 2023 from 11:00am to 1:00pm via Microsoft Teams.

Summary prepared to support clear understanding of the Norfolk Autism Partnership Board’s recent work and ongoing initiatives relevant to autism support and services in Norfolk.