Meeting Details
Date: Tuesday 29 July 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 : Diagnostic Working Group Update
2.1 AG provided a brief update on the status of the Diagnostics Working Group reporting process.
Reports are prepared by the ICB for the diagnostic service.
- These reports are reviewed in detail by the Diagnostics Working Group.
- A summary update is then provided to the board every two months.
Current status:
- The team is working out how future collaboration and reporting will function with the ICB.
- Expected that report content and detail will remain consistent with prior updates, including the monthly reports previously prepared by TW.
2.2 Question: The service has been running for nearly two months. Have we had any initial feedback from service users, referrers, or ABL Health?
Answer: There is no formal data yet, but early feedback from users and staff has been positive, with no current concerns to escalate
2.3 Question: At the recent forum, someone raised a concern that diagnoses from ABL Health might not be recognised by the NHS. Can we clarify that?
Answer: Although ABL Health is not an NHS organisation, it is commissioned by the ICB under an NHS contract, so its diagnoses are recognised as NHS equivalent.
Agenda Item 3: Autism Support Pathways Working Group Update
3.1 Group Aim:
- Improve autism support in Norfolk.
- Make services easier to access and more autism-friendly.
- Co-produce helpful tools for autistic people and families.
- Maintain resources such as the Norfolk Autism Directory and Quick Reference Guides.
- Develop and promote the Norfolk Autism Partnership Kite Mark.
3.2 As a Group, We Will…
- Listen to autistic people and families about their experiences and use this to inform improvements.
- Encourage organisations to update their entries in the Norfolk Autism Directory and identify gaps in support.
- Work with services to remove barriers and improve access.
- Support local groups and charities to offer autism-friendly services.
- Design the application process for the Norfolk Autism Partnership Kite Mark.
3.3 Meetings
- Co-leads will meet monthly to:
- Set the agenda for group activities.
- Agree the progress update for the Norfolk Autism Partnership Board.
- Co-chair the group and ensure inclusive participation from all members.
- The group will meet once every two months
3.4 Requests to the Norfolk Autism Partnership Board
- Approval of the group’s Terms of Reference.
- Invitation to participate: If interested in becoming a co-lead or group member, contact:
- adultautism@norfolk.gov.uk
Autism Support Pathway TOR Agreed pending addition of carers in section 3
3.5 Question: On point 3 of the TOR, could feedback be collected from autistic people, families, and carers?
Answer: Yes, carers can be included.
3.6 Question: Can an autistic person be a co-lead?
Answer: Yes.
3.7 Question: How will the group ensure it includes the right people to discuss autism pathways and gather lived experience?
Answer: The group serves as a reference, but we’ll also use questionnaires and wider conversations with autistic people to understand their needs and priorities across health and social care
Agenda Item 4: Norfolk Autism Forum Update
4.1 Autism Norfolk Forum – 1st July 2025
Attendance:
o 26 registered; 16-18 attended
Next Forum:
o Scheduled for Tuesday, 21st October 2025
Update from Norfolk Autism Partnership Board (NAPB)
Working Groups Updates:
o Diagnosis Working Group
o Autism Support Pathways Working Group
o Young People’s Autism Advisory Group (YPAAG)
Training Update:
o 2 sessions delivered since last forum with 23 participants
o 6 further courses booked
o Participant target exceeded: expected 60, actual 105
Now That’s What I Call Autism 2025 Update
4.2 Guest Speakers
Oliver Godfrey – ABL Health: Adult Diagnostic and Support Service
- New service delivering a minimum of 5 assessments per week.
- Offices based in Thetford.
- Funded by NHS; uncertainty if DWP will accept diagnosticians not employed by NHS.
- Concerns about lack of post-diagnostic support and mental health services.
4.3 Tracey Walton – Norfolk Autism Adult Support Service
Co-production Highlights:
- Developed with autistic people through surveys, focus groups, and namingconsultations.
- Toolkit and service framework shaped by lived experience.
Year One Overview:
- 309 referrals received.
- 64% engaged in coaching; 36% did not engage for various reasons.
- 44% of referrals achieved at least one coaching outcome.
- Common outcomes: community access, managing finances, employment support.
- Gaps identified in routines and life skills support.
Follow-On Support:
- 17% referred to adult social care.
- Action plan to clarify referral pathways and ensure continuity of care.
4.4 Discussion: Reasonable Adjustments in GP Surgeries
What’s Working Well:
- Understanding, flexible staff.
- Quiet or alternative waiting areas.
- Multiple ways to book appointments.
- Clear, direct communication during consultations.
Challenges:
- Over-reliance on unsupported online booking.
- Inflexible systems.
- Discomfort requesting adjustments due to past negative experiences or unclear options.
Consensus: Adjustments often depend on individual staff attitudes rather than consistent, systemic practice.
Agenda Item 5 : Young People Autism Advisory Group (YPAAG) Update
5.1 Facilitator: Gemma Hall
Group Overview:
- Newly established advisory group for autistic young people
- First meeting held 25 July 2025; 6 attendees, 8 registered.
- Meetings will focus on the NAPB strategy priorities; first session covered
Priority 1: Improved Understanding and inclusion of Autism
Meeting Format:
Questions were simplified to:
o What are your struggles?
o What support would help?
5.2 Key Feedback from Young People:
In Schools:
- Struggle to process information quickly; not given time to think before responding.
- Teachers often lack understanding of autism; students feel unheard.
- Asking peers for help can lead to reprimands.
- Need quiet spaces (e.g. before school) as canteens are too noisy.
- Suggest one support class per week for autistic students with and without EHCPs.
Bullying:
- Major concern, especially over special interests.
- Request for autism awareness education for all students, not just staff.
Uniform Issues:
- Discomfort with standard uniforms (e.g. ties, seams).
- Want sensory-friendly uniform options that still meet dress codes.
Timetables:
- Struggle with loud, crowded transitions between lessons.
- Request to leave class a few minutes early to avoid overstimulation.
Accessing Healthcare:
- High anxiety around GP visits due to waiting rooms and uncertainty.
- Request:
- Wait in car with a text-to-enter system
- Social stories outlining who they will see and what to expect in appointments.
Shopping Experiences:
- Queues and noise at tills are overwhelming. Request:
- A quiet or “muted” till/queue for autistic or disabled shoppers
5.3 Next Meeting:
Provisional date: Friday 21 November 2025
Focus: Priority 2: Improve access to education and support transitions into adulthood
5.4 Question: Have the young people tried shopping during quiet hours, do they find it helpful or prefer access at any time?
Answer: Gemma has made a note and will ask this question at the next meeting
5.5 Question: What will be done with this information from the young people?
Answer: Their input will help shape the autism strategy action plan. Action owners will use it to guide priorities, and updates will show how their views are making a real impact.
5.6 Question: Do the young people involved have EHCPs or support plans, and were their needs being met?
Answer: Some have EHCPs or support plans, others don’t. They all face similar struggles, showing that support isn’t always in place or effective.
Agenda Item 6 : Break
6.1 A ten-minute break was held
Agenda Item 7 : Strategy Oversight Working Group Update
7.1 Update Following Last Board Meeting
- TW and KD wrote to action owners for progress updates to the end of May and next steps to end of July
- AG, LG, KD, and TW Met to discuss Norfolk Autism Strategy Group membership and updated Terms of Reference, to be discussed in September meeting
- Strategy Oversight Group met on 7 July to:
- Review BRAG ratings and propose changes
- Clarify unclear wording
- Identify actions needing escalation to the Board
- Highlight well-progressed actions to share with the Board
7.2 Year One Plan – Areas of Good Progress
- Norfolk Autism Partnership Board’s Tier Two training is progressing well and expected to exceed targets
- Change Grow Live providing Tier Two training to their staff successfully
- Local Supported Employment service is on track to exceed government employment targets, with majority of supported people being autistic
- Improved data clarity on Oliver McGowan training and monitoring progress
7.3 Year One Plan – Areas of Concern
- Lack of updates on improvement actions for children and young people’s health, especially diagnosis
- Continued lack of updates on some school improvement actions, despite updates on Local Area Inclusion Plan actions
7.4 Routes for Escalation
Issue 1: A lack of updates on actions relating to improvement work for children and young people’s health, especially children’s diagnosis
Issue 2: Continued lack of updates on some actions relating to improvement work within schools.
Actions Taken:
- NAPB Steering Group tasked to discuss and agree escalation routes
- The Children’s Services senior manager for Education appointed and invited to meetings
7.5 Creating the draft Year Two Plan:
- Initially planned to request Year Two actions from action owners during recent update
- Review of strategic priorities revealed gaps needing reassignment of actionowners
- Required more time to:
- Review Year One progress and carry-over actions
- Reassign organisations to fill gaps in priorities
- Create new templates and personalised messages for organisations
- Organisations asked to respond by Friday 25 July
- Next steps after response:
- Reword actions into plain English and have organisations review
- Share Year One progress update and draft Year Two Plan for group discussion on 1 September
- Submit draft Year Two Plan to NAPB for 30 September meeting
- Seek approval through wider governance before publishing on NAPB
7.6 Next Steps
Write to action owners for progress updates for Year 1 and clarification of new actions for Year 2
When: 1 August. Return by: 15 August, Who: TW and KD
What: Action owners/organisations will be asked to provide
Year One Plan progress updates to 31 July
Agreement on new Year Two actions and timeframes aligned with strategy priorities
Autism Strategy Oversight Group
When: Monday 1 September 1pm to 3pm, Who: All members of this group
What: Members are asked to:
Monitor progress from action owner updates
Co-produce Year Two plan using feedback
Provide feedback on group’s Terms of Reference
Norfolk Autism Partnership Board
When: Tuesday 30 September, Who: All members of the partnership board
What: Members are asked to:
Review Year One Plan Progress Update and agree escalation routes
Review progress on Year Two Plan and agree next step
Approve Norfolk Autism Strategy Oversight Group’s Terms of Reference
7.7 Question: Are mental health updates and actions fully reflected in the plan, or is there a way to ensure any missing information is included?
Answer: We welcome any mental health updates or actions for Year Two, and anything missed from Year One can be added to the ‘You Said, We Did’ section to make sure all progress is captured.
Agenda Item 8 : Reasonable Adjustments in GP Practices
8.1 Context & Purpose:
MK shared work with the Norfolk Autism Partnership Board on improving GP access for autistic individuals.
Issue Identified:
- Autistic children and adults face barriers accessing GP services.
- Referenced National Autistic Society’s “The Constant Fight” report (January 2025):
- 4 in 5 autistic adults struggle to visit GPs.
- Autistic people die 6 years earlier than the general population.
- Survey Summary:
- Distributed to autistic people, families, and carers.
- Anonymous responses collected.
- Key Results:
- 87% felt they needed reasonable adjustments to access GP services.
- 53% had never requested adjustments despite feeling they needed them.
- Only 47% felt confident asking for adjustments.
- Examples of Requested Adjustments:
- Early or late appointments (quieter times).
- Quieter waiting area.
- Waiting in car and receiving a text when the appointment is ready.
- Face to face appointments
- Insights & Implications:
- Strong demand for simple, achievable adjustments.
- Most adjustments are simple, low-cost, and easy to implement.
- Implementation could help reduce health inequalities.
- Next Steps (Proposed):
- Present findings to Learning Disability Leads in every GP practice.
- Note: No equivalent autism lead role currently exists.
- Encourage practices to adopt suggested reasonable adjustments.
- Develop and distribute social stories to support autistic individuals before
- GP visits.
- May benefit broader patient groups as well.
- Present findings to Learning Disability Leads in every GP practice.
8.2 Question: When the respondents ‘asked’ for reasonable adjustments was this verbally, or in writing? Could a scaffolded letter/form/passport support communication?
Answer: The survey didn’t specify how adjustments were requested. Scaffolded letters could help. GP practices now have a coding system to flag reasonable adjustment needs in patient records
8.3 Question: Should mental health practitioners working in GP surgeries—especially those linked to CMHTs—be included in this work around reasonable adjustments?
Answer: Yes, mental health practitioners can often spot adjustment needs and if they know how to code this in patient records, that information becomes accessible to all staff.
8.4 Question: Do we know if the people who asked for adjustments actually received them? Were some requests seen as too difficult by surgeries?
Answer: Many who asked for reasonable adjustments received them. The adjustments were often small, simple tweaks
8.5 Question: Do GP surgeries sign-up to Disability Confident/ce, or is this accreditation specific to employers?
Answer: I’m not aware of any GP practices being Disability Confident, though some are recognised as carer-friendly
Agenda Item 9 : Any other business
9.1 Laura Edwards, an autistic member of the board, has sadly withdrawn from partnership board activities due to personal reasons, including her recentengagement and wedding plans. Laura expressed gratitude, saying the board has been part of her healing and growth, and she left on good terms.
Action: Lee Gibbons will begin recruiting new autistic members
Action: Lee Gibbons to arrange a thank you message from the NAPB
Date, time and location of next meeting
Tuesday 30th September 2025 13:00-15:00 (Microsoft Teams)