Norfolk Autism Partnership Board Minutes – 27th May 2025

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Meeting Details

Date: Tuesday 27th May 2025
Time: 13:00 – 15:00
Venue: Microsoft Teams Meeting

Agenda Item: Pre-Meeting Support

Agenda Item 1 : Welcome and Introduction

1.1 Welcome and introductions made. Communication prompts posted to the Teams Chat window, and their use explained. No reasonable adjustments were requested. Members reported no declaration of interest.
Minutes and action log approved by the Norfolk Autism Partnership Board (NAPB)
Code of Conduct to be monitored by Lee Gibbons

1.2 Members were notified that an automatic transcript of the meeting would take place
to ensure accuracy of minutes. There were no objections

Agenda Item 2 : Diagnosis Waiting List Update

2.1 Adult Diagnosis, aged 18+ (without a Learning Disability)

• 28 people referred to the service
• 22 people added to the waiting list for an assessment
• 1231 people waiting at the end of March 2025
• 12 assessments completed

Waiting period breakdown:

• 71 people waiting over 200 weeks
• 686 people waiting over 104 weeks and up to 200 weeks
• 363 people waiting over 52 weeks and up to 104 weeks
• 111 people waiting below 18 weeks

TW was unable to attend the board meeting, so no comments were made on this data

2.2 Question: How will the diagnostic data be presented starting from June 1st?
Action: For the Diagnosis and Support working group & the NAPB to discuss how they wish to have diagnostic data presented from the 1st June

Agenda Item 3: Diagnosis and Support Working Group Proposal

3.1 The Board was presented with a proposal to spilt the current Diagnostic and Support Working Group into two separate groups: one focused on diagnostics, and the other on broader support, including statutory and non-statutory areas. Details for the groups are still being finalised. Upon approval, terms of reference for both groups will be completed and presented.
Board members were asked to agree to the separation of the Diagnosis and Support Group
The Board approved the split of the group

Action: Finish first draft of TOR for both Diagnosis Working Group and Support Pathways Working Group, bring back to Board for sign off
Action: Find a Group Lead for the Support Pathways Working Group

3.2 Question: Has it been considered whether people can commit to attending two separate groups if the Diagnostic and Support Group is split?
Answer: Yes, this has been discussed. Most members focus on either diagnostics or support, so they’d likely join the relevant group, though some may participate in both.

Agenda Item 4: Autism Strategy: Year 1 Progress

4.1 Updates Following March Board Meeting:

• Tracey and Karen added the progress updates in the agreed format to theAutism Strategy Oversight Group on 1 May.
• Tracey and Karen met with the Police, who have established a governance structure and are aligning their actions with the Autism Strategy priorities for inclusion in the Year 2 Plan.

4.2 Strategy Oversight Group Meeting – 12 May:

• Reviewed the BRAG ratings and proposed changes.
• Agreed actions that have not progressed as expected to share with the Board.
• Agreed actions that have progressed well to share with the Board

4.3 Year One Plan – Areas of Good Progress:

• How quickly the Norfolk Autism Partnership Board arranged the Now That’s What I Call Autism event on 2 April
• Completion of two Short Breaks actions, enabling families to use Short Breaks funding for activities involving siblings or the whole family.
• Autistic people are involved in shaping how activity groups at Bure Prison should operate, with an autistic prisoner leading a group activity.

Question for the Board: As a Board, how would we like to recognise this work?
Suggestions including developing a kite mark or certification recognising good progress in various areas were proposed. However, after discussion, it was agreed to put the idea on hold for now and revisit it at the end of the year.

4.4 Year One Plan – Areas of Concern:

A continued lack of update to improve mental health support:

• No updates on Mental Health actions.
• The Learning Disabilities and Autism team will obtain updates for the next reporting period and agreed to escalate this issue, ensuring ongoing monitoring.

No updates on several actions relating to improvement work in schools:

• The Children’s Services senior manager with responsibilities for Education was not in post to provide an update on these actions.

4.5 Escalation Routes:

1. Mental health actions for Year One. Action already taken:

• The NAPB Steering Group tasked with discussing and agreeing on escalation routes.
• The Learning Disability and Autism Integrated Care Board (ICB) acknowledged the need for escalation and agreed to monitor the provision of updates moving forward.

2.No updates on several actions relating to improvement work in school. Action already taken:

• The issue has been raised with the Children’s Services senior manager responsible for Education.

Question for the Board: How and whether they wish to escalate these concerns further.
It was suggested that the topic of escalation should be explored in more detail by the Steering Group

4.6 Next Steps

Write to action owners for progress updates for Year 1 and new actions for Year 2
When: 30 May 2025. Return by: 13 June 2025, Who: TW and KD
What: Action owners/organisations will be asked to provide
Progress update to 31 May 2025
Planned next steps to 31 July 2025
Proposals for new Year 2 actions aligned with strategic priorities

Report to the Learning Disability and Autism Programme Board
When: 24 July 2025. Who: TW, KD, and AG
What: Share good practice and any areas of concern for escalation for the Autism
Strategy Year One Plan Progress Update to May 2025.
Autism Strategy Oversight Group
When: Monday 12 May 2025, 1 pm to 3 pm. Who: All members of this group
What: Monitor progress based on updates from partners.

Norfolk Autism Partnership Board
When: Monday 7 July 1 pm to 3 pm. Who: All members of this group
What: Review the progress update and agree any actions for the Autism Strategy
Year One Plan Progress Update to 31 July 2025.
The Year 2 plan is planned to be presented to the 23 September Board subject to organisations governance arrangements.

4.7 Question: When does the NAPB formally report progress to the Learning Disability and Autism Programme Board?
Answer: Reports are submitted quarterly, the next one is scheduled for July.

4.8 Question: Can we share Learning Disability and Autism Programme Board report updates on the NAPB website to keep the public informed?
Answer: The full report is too formal, but we could consider sharing key highlights or summarise.

4.9 Question: What’s the difference between the Oversight Group and the Steering Group?
Answer: The Steering Group, made up of autistic people, influences the Board’s work. The Oversight Group monitors the strategy’s actions and reports progress to the Board, escalating issues if needed
Action: To update the Norfolk Autism Partnership structure Diagram and share to all members

Agenda Item 5 : Autism Intensive Support Service

5.1 Introduction

• Joanna Smith introduced herself and the autism intensive support service she leads part-time
• Ben introduced himself as a neurodevelopmental clinical nurse specialist, working since January to set up the service.
• Rhiannon Tyler is the assistant psychologist supporting the team.

5.2 Need for the Service

• Approximately 32% of high intensity users (those frequently accessing urgent/emergency care such as CMHT, 111, A&E) have a diagnosis or suspected autism.
• Autistic admissions make up about 5% of total admissions, increasing to 7.23% for suspected autism
• The current mental health and social care services often do not meet the needs of autistic individuals adequately.
• Staff may lack specialist skills or confidence in supporting co-morbidities.
• There are significant service gaps; autistic individuals’ mental health needs can be dismissed, leading to inadequate care.

5.3 Service Overview and Pilot Plan

• The service will cover the Norfolk and Waveney
• Target group: aged 18–25, with diagnosis of ASD and a co-morbid mental illness
• A one-year closed pilot with a capped caseload of 15 service users to allow intensive, assertive support.

5.4 Team and Recruitment

• Current team: three part-time staff (Joanna, Ben, Rhiannon).
• Recruitment underway for a nurse link to the Dynamic Support Register to support clinical responsibilities.

5.5 Service Delivery

• Aim: Enhance community-based support to reduce reliance on inpatient care for autistic individuals.
• The service will provide specialist intensive support for autistic individuals experiencing frequent mental health crises for up to 1 year.
• The team is small and will not cover all aspects of the individual’s care.
• The team will collaborate with the wider system to ensure tailored care packages after the 12-month period.

Support focuses include:

• Coping strategies, resilience building, and functional support toward personal goals.
• Assistance in navigating systems.
• Encouraging connections within the community and other services for ongoing support.
• Crisis Plus intervention adapted for autistic service users.
• Providing consultation to teams such as Crisis Resolution and Home Treatment and inpatient services.
• Delivering staff training through the National Autism Trainer Programme and training needs analysis.

5.6 Measuring Impact

• Improved outcome scores on a range of Patient-Related Outcome Measures.
• Reduced use of urgent and emergency care and inpatient resources (e.g., fewer contacts with liaison teams, crisis teams, and admission prevention).
• Improved collaboration between care providers and development of personalised care packages.
• Increased capacity for consultation and training within Voluntary sector and supported living partners.
• A quarterly report will be produced to track progress and outcomes.

5.7 Future Plans Post-Pilot

• Referrals will be opened, but only accepted if a trusted assessment and safety plan have been completed.
• The number of referrals accepted will depend on service capacity (currently unknown).
• If capacity is full, service users will be signposted to alternative resources.
• GPs and referrers will be informed of the individual’s treatment plan.

5.8 Question: I wondered how will you choose the 15 people from your list?
Answer: We’re targeting frequent emergency care users from a list to help reduce repeated admissions.

5.9 Question: Who will complete the assessment and safety plan required before referrals are accepted post-pilot?
Answer: The community team should have an up-to-date safety plan and risk assessment; if not, we’ll help set these up before accepting referrals to ensure smooth, collaborative transitions

5.10 Question: Will the service support autistic adults without a diagnosis, especially those on waiting lists?
Answer: The service will include individuals who are on the waiting list and anyone who has a need, regardless of whether they have a formal diagnosis.

5.11 Question: Are your statistics based only on people with a formal autism diagnosis?
Answer: No, our data includes both diagnosed and suspected autistic individuals.

5.12 The board was unable to address all questions due to time constraints, so the discussion will continue at the next meeting
Action: Schedule follow up for Autism Intensive support service

Agenda Item 6 : Break

6.1 A ten-minute break was held

Agenda Item 7 : The Real Care Deal

7.1 Introductions:

• Cat Duncan-Rees and Nat Clarkson introduced themselves.
• Nat shared his lived experience with autism, ADHD, dyspraxia, and related challenges in navigating social care.

7.2 Background and Context:

• The project began as an ethical framework developed in collaboration with Norfolk County Council.
• Feedback from service users with lived experience played a key role in shaping the framework.
• The framework evolved into the Real Care Deal, aiming to:
• Make social care relationships more mutual and meaningful.
• Reflect the real experiences and needs of service users.

7.3 Website Overview:

• The website will communicate the Real Care Deal initiative, share lived experience stories, and support ongoing learning.
• A prototype is expected by June.
• The platform will be co-produced and updated continuously with input from people with lived experience.

7.4 Accessibility and Format:

• Content will be available in three formats: watch, listen, read (video, audio,written).
• A plugin by Recite Me will allow users to:
  • Change colours
  • Use a built-in screen reader
  • Translate content
• Easy-read content will be co-produced with Thinkclusive.
• Users can submit feedback or contact messages via audio or video, not just written formats.

7.5 Digital Inclusion:

• Efforts are being made to address digital exclusion.
• Printed materials will be made available where needed.
• Collaborating with the Council on potential grants or schemes to provide digital access tools.

7.6 Stories and Learning:

• The heart of the site is a searchable database of lived experience stories.
• Each story includes:
  • A summary
  • Key learning points
  • Outcomes and how challenges were resolved
• Stories will show both positive outcomes and ongoing challenges.
• Monthly spotlight: the first is Kyle from King’s Lynn, highlighting his journey and creative use of direct payments.

7.7 Ethical Practice and Consent:

• All content is shared with informed consent.
• Contributors have been invited to upcoming sessions to see how their stories will be used.

7.8 Next Steps:

• Website is not active / live as content is still being co-produced
• June 2025 – initial launch date for the website
• Online learn more sessions 18th and 19th June: https://www.ticketsource.co.uk/curators-of-change
• Participation in the Co-production Showcase at The Forum on 9th July.
• Local engagement events across Norfolk planned for late July

7.9 Question: Could the Real Care Deal be linked on the NAPB website as it develops?
Answer: Yes. The project is community-driven, and we want to connect with networks across Norfolk

7.10 Question: Could the Real Care Deal team share the website with the Norfolk Autism Forum for feedback and future promotion?
Answer: Yes, we’ll share the link in advance for feedback and can join a forum session. Promotion once it’s live would be greatly appreciated
Action: Curators of Change to attend the Autism Norfolk Forum regarding the Real Care Deal website (when live)

7.11 Question: Who made the video with the cut-outs? Is it a community project?
Answer: It was made during a co-production workshop with people who have lived experience and practitioners

Agenda Item 8 : Young People Autism Advisory Group Proposal

8.1 Purpose: To ensure the voices of autistic young people (aged 11–18) are directly represented on the NAPB.
Structure:

• Membership: 8–15 young people aged 11–18
• Meetings: Bi-monthly
• Support: Facilitated by a skilled professional
• Reporting: Formal feedback to be provided to the NAPB

Next Steps:

• Approve the creation of the group
• Finalise the Terms of Reference
• Begin recruitment process (9 young people have already expressed interest)
• Appoint a facilitator and administrative support

Board members were asked to approve the creation of the group to move forward.
The Board endorsed the proposal

Agenda Item 9 : Any other business

9.1 MK asked the board for any thoughts or suggestions on how to increase awareness of reasonable adjustments for autistic people in general practice.
It was suggested that a small group be set up to explore this further through dedicated discussion.
It was also recommended that MK link with the Curators of Change.

Action: Lee to gauge interest on attending a meeting to help in the awareness of reasonable adjustments in GP practices. Pass interest on to Maria Karretti for scheduling and action.

9.2 K announced their decision to retire and step down from the role of Co-Chair. Having been involved with the group since 2019 and serving as Co-Chair throughout that time, TK expressed their appreciation for the experience, describing it as thoroughly enjoyable. TK will continue to be involved as a board
member going forward.

9.3 LG explained that a parent emailed regarding a report from Doctor Shadi and requested a needs assessment for an EHCP. An investigation into Doctor Shardi’s malpractice was mentioned, but no update has been provided. LG intended to ask CA for an update, but CA had to leave the meeting early.

Action: Lee to follow Dr Shadi query up with Caron Ager regarding investigation into malpractice

9.4 LG asked to be linked with JR regarding the Autism Experience
Action: To introduce Jo Royal and Laura Edwards regarding the Autism Experience

Date, time and location of next meeting

Tuesday 27th May 2025 13:00 -15:00 (Microsoft Teams)