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Meeting Details
Date: Tuesday 09 August 2022
Time: 10:00 – 12:00
Venue: Microsoft Teams Meeting
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.
1.2 Representatives informed the Board that the CCGs will now be known as the Integrated Care Board (ICB). Future notes will reflect this.
1.3 Since the last meeting, Tom Bassett, Partnership Transformation Manager, has left the council. The Board thanked him for his work.
Agenda Item 2: Minutes of previous meeting 14 April 2022 and matters arising not on the agenda.
2.1 Agreed: Minutes of previous meeting accepted as true record of the meeting. Will be added to the NAP Webpages.
Agenda Item 3: Autism Norfolk Forum Update with Lee Gibbons and Diagnostic Data Discussion with Tracey Walton
3.1 Autism Norfolk Forum on Housing held on Thursday 23 June. Speakers included Matthew Mallett, Commissioning Manager (Learning Disabilities) for Norfolk County Council, and James Bryan and Michael Deakin, Team Leader Community Advisers for the charity Shelter. Following presentations by the guests, discussion followed. Key points reported to the Board as follows:
-Good Feedback regarding the Norfolk Integrated Housing and Community Support Services (NICHHS) and Orbit Housing Association.
-There are issues around people receiving inappropriate housing. One attendee quoted as saying “You’ve got a house, be grateful”.
-Concerns around rising rent and negative experiences dealing with Housing Options. Board members, Partners or any other relevant organisation representatives asked to secure housing for autistic people in any development plans they are involved with.
Following discussion with Forum attendees to identify relevant discussion topics, it was decided that the next Forum should be on Advocacy. The Board agreed to this decision.
Action: Lee Gibbons to arrange next Forum on Advocacy in September if possible. A new series of Forums to be arranged once Board independence achieved.
3.2 Diagnostic Data Discussion Tracey Walton gave an in-depth presentation on current data for autism provision, diagnostic referrals and waiting times across Norfolk. She outlined the differences between the different services commissioned for children and adults with autism and their respective current waiting times. Waiting times have increased over the course of the pandemic despite efforts made to clear case backlogs. Tracey also explained the current state of pre- and post diagnosis support for autistic people of all ages, especially as provided through Starfish and Starfish+, with figures for referrals, completed assessments and numbers of people waiting for assessment. Finally, she explained the challenges in collecting this data for the Board, as different commissioning arrangements use different reporting methods and with few electronic systems in place the data had to be collated manually. NHS Digital is currently building statistics reporting capabilities for mental health, learning disabilities and autism services; it is Tracey’s intention to use this once it becomes available.
Agreed: After discussion of individual points, the Board requested Tracey brings regular data updates to future meetings. Tracey agreed, but explained that she could not guarantee a similar level of detail in future given the difficulties sourcing for today’s presentation.
Agenda Item 4 : Pathological Demand Avoidance Update with
Rebekah Muttitt
4.1 Rebekah Muttitt and Dr Mel Bruce from Starfish+ gave presentation on Pathological Demand Avoidance (PDA), following up on previous presentations to the Board and Diagnosis Working Group. After outlining what PDA is and how it presents in individuals, Rebekah and Mel explained that it is wrongly believed that Norfolk “does not believe in PDA”. This is worsened by the fact that there is not enough knowledge of the condition in practitioners for the Neurodevelopmental Disorder Pathway Working with the Diagnosis Working Group, Family Voice and other Partners, Rebekah and Mel have written a coproduced Position Statement for Norfolk on PDA.
4.2 Discussion followed. Maria Karretti noted that there is a need for learning about PDA in GP training, especially for effective support strategies as these will differ significantly from “typical” strategies. Suggestion raised to include an additional page on PDA in the Understanding Autism course, but agreed that this may not be enough to cover all relevant information. Specific training from the PDA Society will be investigated instead. Adding training on PDA to ICB training offer was agreed to be a good idea.
Action: Rebekah Muttitt and Mel Bruce will continue to work with Diagnosis Working Group moving forward. They will continue to update the Board with progress.
Agenda Item 5 : Procurement Update and Discussion with Lee Gibbons
5.1 Lee Gibbons outlined progress made with procuring a new provider to run the Norfolk Autism Partnership and Learning Disability Partnership since the last meeting. Closing date for bids was 27 June, followed by a moderation meeting on 19 July. The moderation panel consisted of Tom Bassett, Trevor Key, and representatives of ACE Anglia.
5.2 Lee Gibbons and ASD Helping Hands were successful in their bid. Lee will work with the coordinator to ensure the handover goes smoothly ahead of the official contract start on 5 October 2022.
Lee explained his plan keep the Boards and working groups running as they do presently, at least to begin with. While he will continue to focus on the Autism Partnership, he is in the process of hiring an expert to run the Learning Disability Partnership. He is also in the process of securing a venue to host partnership events, and plans to set up and promote the partnerships via social media.
5.3 The Board congratulated Lee on his successful bid and hopes to continue working with him in the future.
Agenda Item 6 : Data and General Data Protection Regulation (GDPR)
6.1 As the Partnership is becoming independent from Norfolk County Council, the Council will no longer be acting as the Partnership’s Data Controller. To ensure the handover goes smoothly, the Partnership Coordinator asked all Board Members present for their permission to share their personal data with ASD Helping Hands.
6.2 Agreed: All Board Members present agreed and will be shared. A note has been made of missing members.
6.3 Action: The Partnership Coordinator will draft a message to all members asking for their permission to share data with ASD Helping Hands. Only those who give permission will have their details shared.
Agenda Item 7 : Any Other Business and Wellbeing Check
7.1 No other business.
7.2 Wellbeing check performed via email survey
Date, time and location of next meeting
Tuesday 11 October 2022, 11am-1pm
PLEASE NOTE: Future meetings will be arranged by ASD Helping Hands. A new schedule of meetings will be forthcoming.