Meeting Details
Date: Tuesday 26 March 2024
Time: 11:00 – 13:00
Venue: Microsoft Teams Meeting
Agenda Item: Pre-Meeting Support
Agenda Item 1 : Welcome and Introduction
1.1 Board Members were asked to introduce themselves in the Teams chat function
1.2 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
1.3 Action: Rachel Gates to feedback to the NAPB on the request for representative to join the LD& A
partnership Board.
Update: An agenda item within this meeting
1.4 Action: To keep in contact with Tracey Wooldridge regarding further updates to the Care, Education
and treatment review.
Update: Still no update regarding this to continue to enquire.
1.5 Action: Creation of a Norfolk Autism Directory Invite to join the Norfolk Autism Directory have now gone out to partners and to other interested parties. Was hoping to officially launch in Autism Acceptance
Week (2nd – 8th April 2024)/ However this now seems unlikely
Agenda Item 2 : Co-Chair Update
2.1 AG currently attends:
- Autism and Suicide Prevention meeting ran by public
- Health (as a NAPB rep and an Expert by Experience)
- ICB Mental health – as an Expert by Experience
2.2 Autism and Suicide Prevention
Current concerns around Mental Health services not being aligned to autistic peoples needs and the disengagement of autistic people from the mental health services.
Reported that a working group to be set up looking at Autism and Suicide
Links to Mental Health and Suicide in autistic people are being raised.
Main difficulty is that they are unable to record Autism diagnosis, so data is not correct.
There is to be a stock take of Mental health service for Autistic People to see what is relevant and available. This is considered a positive move forward.
2.3 TK currently attends:
- Adult Safeguarding Board
- Charging Reference Policy Group
- Lecturer and expert by experience at the University of East Anglia (UEA)
Agenda Item 3: Diagnostic Update
3.1 Adult Diagnosis (without a Learning Disability)
- Annual average referrals of 92 each month
- Total number of adults waiting 1041 (48% increase since completion of the initiative work completed)
- Average 17 assessments a month
Waiting period breakdown:
- 11 waiting between 200-104 weeks (0 person waiting longer than 200wks)
- 318 waiting between 104–52 weeks
- 541 waiting between 52-18 weeks
- 171 waiting up to18 weeks
3.2 Commissioners are working with CYP to provide a system approach to provide an autism assessment for those transitioning to adult services.
- Funding for 2023/24 identified with work in progress to signpost to the external market to
offer an earlier assessment and reduce waiting times. - Conversations continue to commission the service from March 2025.
3.3 Children and Young People wait times.
Due to ongoing contract negotiations with providers this information is currently unavailable
3.4 Question: When will additional funding be in place?
Answer: The hope is that this will be available in the next couple of months. As those waiting before April 2023 have already been offered the option of an earlier assessment through an external provider and declined, those who joined the waiting list after April 2023 will now be offered the option
3.5 Question: Given the long waits, can people get funding from the NHS to support obtaining a
private diagnosis? (Background – In Hampshire the council have allocated a pot of money to help their waiting list by offering some financial support to those who are seeking private diagnosis and accessing the external market of providers)
Answer: This model is not something we are aware of and happy to contact Hampshire to find out more information about this programme.
3.6 Questions: There were concerns around the information released regarding DR Shadi, and not following NICE Compliant guidelines in diagnosis. People affected should receive a letter from Norfolk County Council.
Action: TW to seek a formal response is required from Children’s, Young people and Maternity Commissioners
Agenda Item 4: Learning Disability and Programme Board
4.1 We continued the conversation of whether the Norfolk Autism Partnership Board should have representation on the Learning Disability and Autism Programme Board. The consensus for this was that we should.
4.2 RG has been working with the LD & A programme board to facilitate this. RG was not present that the
board meeting so di not comment directly on the progress however it is believed that it is being hindered by the restructure of the ICB.
Action: KD to ask RG what the expected time frames are for this
4.3 There was confusion among multiple members and organisations as to the purpose of the Learning
Disability and Autism programme board, and why this could not be overseen by the Norfolk Autism Partnership Board. The LD & A Programme Board is responsible for the running and delivering of services for autistic people and people with a learning disability. Further explanation is needed to understand the
difference between the Norfolk Autism Partnership Board and the LD & A programme Board.
Action: Lee Gibbons to try to arrange a presentation on the purpose and structure of the LD & A Programme Board.
Agenda Item 5 : Break
5.1 Break – A ten-minute break was held
Agenda Item 6 : Social Care Conversations
6.1 LE presented the work that the Autism Social Care Reference Group had been carrying out. They were
tasked with creating better information for autistic people to prepare them for a meeting with Adult Social Services.
6.2 Two documents have been created:
- Introduction to a Social Care Conversation (2 pages long)
- Guide to a Social Care Conversation (Longer document with space for notes)
Action: Publish these documents to the NAPB website for information
6.3 These guides will be sent to all social care teams via the Norfolk County Council Intranet. The guides can be emailed or posted to autistic people before their first meeting There is also a version available for any assessments that happen over the phone.
6.4 Question: Can guides like these be produced for Children’s Services?
KD said that she was unable to answer this but would be happy to take an action away to enquire
further with Children Services about the possibility
Agenda Item 7 : Charging Reference Policy
7.1 Claire Sullivan and Susanne Baldwin (Norfolk County Council) Joined us to talk about the current consultation for the Charging of non-residential care packages and the Minimum Income Guarantee.
7.2 The Presentation is attached to these minutes
7.3 Points raised from the discussion:
- It is important to have the voices of those that this will affect represented.
- Could this be introduced in a tapered / staggered way as it could be a large shock to those who must pay an increase
- There would be no backdating of any charges.
- There should be more transparency around the consultation and the history of the Minimum Income Guarantee
- There is no option 3 of no change
Action: If required set up a group of people to go through the consultation in greater details and put
together a group response. Consultation closes 19th May
7.4 Consultation link: https://norfolk.citizenspace.com/health/non-residential-care-charging-policy/
Agenda Item 8 : Norfolk Autism Strategy Refresh
8.1 The Autism Strategy Group are currently writing the draft Norfolk All Age Autism Strategy
8.2 We are holding an Extra-ordinary meeting on the 30th April for members to provide feedback on the draft strategy and consider how to implement the strategy through an annual plan prior to governance and sign off by all partners organisations.
8.3 For the meeting in April members are asked to:
- read the draft strategy.
- consider approaches to deliver the strategy
- think about how we can launch the refreshed strategy
8.4 Action: The draft strategy will be distributed to all members on the 16th April.
Agenda Item 9 : Any other Business
9.1 It was acknowledged that Autism acceptance week was being held between the 2nd April – 8th April and that there was a lack of things for Adults planned during this week. There was an ask of the Board to be more proactive in its planning of events for Autism Acceptance Week 2025.
9.2 Details of what had been planned can be viewed on the Norfolk County Council Website:
https://www.schools.norfolk.gov.uk/article/52885/What-is-Norfolk-Autism-Acceptance-Week
Date, time and location of next meeting
Tuesday 30th April 2024 11:00-13:00 (Microsoft Teams)