Norfolk Autism Partnership Board

Meeting summary

Norfolk Autism Partnership Board Meeting Summary
Meeting date: Tuesday 9 August 2022
Time: 2:00 – 4:00 pm
Venue: Microsoft Teams (virtual meeting)

Purpose of the meeting
The Norfolk Autism Partnership Board (NAPB) met to discuss updates on autism-related services and projects in Norfolk. The meeting aimed to review progress on housing, diagnosis and demand avoidance presentations, partnerships procurement, data sharing procedures, and to agree next steps and actions for supporting autistic people in the community.

Attendees
The meeting was chaired by Adrian Grant and Trevor Key, with representatives from Norfolk County Council, the Integrated Care Board (ICB), voluntary and family voice groups, autistic adults, social care, health, and carers’ organisations. Apologies were noted from several individuals including the Executive Director for Adult Social Services, health trust representatives, and members of Norfolk Constabulary. Two prospective volunteer observers also attended.

Welcome and introductions
The meeting opened with a welcome and introductions. Communication prompts were shared to support ease of participation, and no adjustments were requested. It was noted that Clinical Commissioning Groups (CCGs) will now be known as the Integrated Care Board (ICB), and future documents will reflect this change. The Board also acknowledged the departure of the Partnership Transformation Manager, Tom Bassett, and thanked him for his contributions.

Minutes and matters arising
The minutes from the previous meeting on 14 April 2022 were accepted as a true record and will be uploaded to the Norfolk Autism Partnership webpages.

Autism Norfolk Forum update and diagnostic data discussion
Lee Gibbons provided an update on the Autism Norfolk Forum which took place on 23 June, focusing on housing. Speakers included representatives from Norfolk County Council’s Learning Disabilities commissioning team and charity Shelter’s Community Advisers. The forum received positive feedback on services such as Norfolk Integrated Housing and Community Support Services (NICHHS) and Orbit Housing Association. However, some issues were highlighted, including incidents of autistic people being placed in unsuitable housing, dismissive attitudes exemplified by quotes such as “You’ve got a house, be grateful,” and concerns over increasing rent costs and poor experiences dealing with Housing Options. The Board encouraged those involved in housing developments to prioritise securing appropriate housing for autistic people. Following consultation with forum attendees, it was agreed that the next forum topic would be Advocacy. Lee Gibbons was asked to arrange this for September if possible. There are plans to organise a new series of forums once the Board achieves independence.

Tracey Walton presented detailed diagnostic data for autism services across Norfolk. She outlined the differences between child and adult diagnostic services commissioned in the area and current waiting times, which have increased since the pandemic despite efforts to reduce backlogs. Tracey also highlighted the referral and assessment data for Starfish and Starfish+ pre- and post-diagnosis support services. She explained the challenges involved in collecting consistent data due to different reporting methods and the absence of integrated electronic systems. NHS Digital is working on developing better reporting tools for mental health, learning disabilities, and autism services, which Tracey intends to use when available. The Board requested that Tracey provide regular updates on diagnostic data at future meetings, understanding that the level of detail may vary.

Pathological Demand Avoidance (PDA) update
Rebekah Muttitt and Dr Mel Bruce from the Starfish+ team gave a presentation on Pathological Demand Avoidance (PDA), building on previous Board discussions. They clarified what PDA is, how it presents, and challenged the misconception that Norfolk “does not believe in PDA.” They noted insufficient practitioner awareness of PDA within the Neurodevelopmental Disorder Pathway. Working with the Diagnosis Working Group and Family Voice, Rebekah and Mel have co-produced a Position Statement on PDA for Norfolk. The Board discussed the need for PDA-specific training, particularly for GPs, since support strategies for PDA differ significantly from standard autism approaches. There was agreement that including PDA information in existing Understanding Autism courses may not be enough. The possibility of specialist training from the PDA Society was mentioned and adding PDA training to the Integrated Care Board’s training offer was supported. Rebekah and Mel will continue collaborating with the Diagnosis Working Group and updating the Board on progress.

Procurement update
Lee Gibbons updated the Board on the recent procurement process for a new provider to run both the Norfolk Autism Partnership and the Learning Disability Partnership. The closing date for bids was 27 June, followed by a moderation meeting involving current partners and ACE Anglia representatives. Lee and ASD Helping Hands were successful in the bid, with the contract starting officially on 5 October 2022. Lee plans to maintain existing partnership structures initially and is hiring an expert to lead on the Learning Disability Partnership. He is also working to secure a venue for partnership events and intends to promote the partnerships through social media. The Board congratulated Lee and expressed optimism for continued collaboration.

Data and General Data Protection Regulation (GDPR) considerations
As the Norfolk Autism Partnership moves toward independence from Norfolk County Council, the Council will no longer act as the Partnership’s Data Controller. To facilitate a smooth transition, the Partnership Coordinator sought permission from Board members present to share their personal data with ASD Helping Hands, the new provider. All present approved this data sharing. The Coordinator will also draft a message to all Board members requesting permission to share their data. Only members who provide consent will have their personal details shared.

Any other business and wellbeing check
No additional business was raised. A wellbeing check was planned to be carried out via an email survey.

Next meeting
The next Norfolk Autism Partnership Board meeting is scheduled for Tuesday 11 October 2022, from 11:00 am to 1:00 pm. Future meetings will be arranged by ASD Helping Hands, with a new schedule to be announced.

Glossary
The minutes include a glossary to explain abbreviations such as ANF (Autism Norfolk Forum), ASD (Autism Spectrum Disorder), ICB (Integrated Care Board), NCC (Norfolk County Council), NCH&C (Norfolk Community Health and Care), and SEND (Special Educational Need and Disabilities), among others.

Summary
This meeting focused on updates from the Autism Norfolk Forum on housing concerns, comprehensive autism diagnostic data presentation highlighting longer waiting times, an informative session on PDA and future training needs, and the successful procurement of ASD Helping Hands to lead the Norfolk Autism Partnership. Key actions include arranging the next forum on Advocacy, ongoing diagnostic data reporting, continuing work on PDA awareness and training, facilitating data sharing agreements for smooth organisational transition, and preparing for upcoming meetings under new leadership. The Board continues to emphasise the importance of appropriate housing, timely diagnosis, and tailored support for autistic individuals across Norfolk.