APB Minutes - 24 July 2024
Autism Partnership Board meeting
Time: 10.00am to 12.30pm
Venue: Microsoft Teams Virtual Meeting / County Hall, Lewes
Chairs: Mark Stainton, Director of Adult Social Care and Health
1. Welcome, actions and minutes from last meeting
Welcome, introductions and apologies
Mark welcomed everyone to the meeting, introductions were made, and apologies noted.
It was noted that a joint chair will be joining along with 4 new members who will bring experience and expertise to the group.
Agree minutes from previous meeting
The minutes from the meeting held on 20 February 2024 were accepted as an accurate record of discussions.
Actions from previous meeting
Actions 42, 43, 44, 45, 46, 47, 48, 49 & 50 be closed.
Key notes below:
Action 38: It was confirmed that a meeting had been held with People Matters to discuss what is happening within East Sussex for businesses and employers to support employing autistic people. Some internal ESCC guidance is being created for managers on how to recruit, interview and work with neurodivergent individuals. This action has been updated to work with the ESCC corporate team to re-engage with Sussex Chamber of Commerce prior to the 2025 Autism Celebration Week.
Action 42: It was confirmed that the Autism Pathway Review and Implementation Group have reviewed the leaflet available on the Local Offer page in the section called ‘Waiting for an Autism Assessment or Diagnosis’. Autism | East Sussex Local Offer.
Action 51: Suicide Prevention Board. A representative had attended an East Sussex Suicide Prevention network led by Public Health. They will be giving a presentation on 30 July to discuss a proposal to hold crisis management focus groups to consider opportunities for improvement. This is ongoing.
2. Autism Action Plan
Update from Autism Action & Planning Group
TCG gave an update from the Autism Action & Planning Group. Meetings are being held every two weeks (4 held so far). Key actions include:
- Creation of APB position statement for online public consultation
- Created aims and outcomes for the stakeholder workshops being held during September
- Liaised with Public Health regarding the autism definition, and that the conversion from people on the waiting list to diagnosis is around 90% so should be factored into the datasets being produced
- Reviewed the initial draft of the Co-chair job advert
- Undertook service and community mapping
Next steps are to increase the membership to ensure diversity.
The group were thanked for their detailed feedback towards the planning for the stakeholder consultation.
East Sussex Autism Action Plan update
A presentation was shared which had been distributed on 18 July. Key points below:
- Working with Public Health to develop an Autism Prevalence Assessment
- Focus groups with autistic people are ongoing. Currently trying to engage with Lewes Prison, ESPCF, autism youth groups, Youth Justice Services and Global Majority networks
- 4 Stakeholder workshops will be held in September
Adults – Employment and Health & Wellbeing
Children – Health & Wellbeing and Education and post 16 learning
From the workshops it is intended to develop priority actions for change
There have been delays to timescales due to breadth of information gathered from survey and the General Election
East Sussex Autism Action Plan: Online Survey Feedback
A presentation was shared which had been distributed on 18 July. Key points below:
- Online survey ran from 2 April to 10 June with 324 respondents
- The consultation survey aim was to find out what is currently working well and help identify areas for improvement
- There were 9 survey topics including: autistic voice, community activities, health, diagnosis, housing and transport
Key headlines from the survey:
- Majority of respondents find it hard to access activities, support and services across all 9 topics
- Poor understanding of autism from others, including professionals and the public
- Lack of inclusive, convenient and suitable options for social and community activities for autistic people
- Difficulties in accessing schools and colleges in East Sussex
- Difficulties in finding and sustaining work
- Difficulties in access to health and care services
- Long waiting times for diagnosis and lack of support after diagnosis
- Several respondents don’t feel safe due to anti-social behaviour and lack of safe spaces
- Public transport unreliable and difficult due to sensory experiences
Most important things to change
- Schools and colleges
- Attitudes to autism
- More support generally
- More advice for families and carers
- More activities
Breakout rooms held to discuss the update. Key points from the breakout room discussions:
- No surprises in the information gathered. Feedback was as expected and matches individuals’ experiences
- Deep dive of the data required to fully understand what part of accessing services is difficult
- Ensure that there is clear distinction between feedback from parents, carers, and autistic people
- For statutory services we need to balance what people need against what they want
- Further understanding needed around groups that were underrepresented (men / geography) within the survey to think about other channels we could use to try and get representation
- Use national organisations that could help reach the groups underrepresented
- Survey shows that it is as much attitude change as well as provision of services, increasing peoples understanding and adjusting their mindsets
Actions:
- Re-run survey in the future to determine whether activities within the action plan are having a positive impact
- Consideration of the breakout room thoughts to be incorporated into the stakeholder workshops
4. Autism acceptance week
World Autism Acceptance Week: Reflection
A presentation was shared which had been distributed on 18 July. Key points below:
- An extensive internal and external communication. Internal views 4001 / external views 3066
- Commissioned MS Teams background designs by artistic people with autism, and received good feedback
- Autism Action Plan Consultation Launch with 1600 views
- Worked with the local business community around employment
- Undertook training and engagement session
- Uckfield Chamber of Commerce would like to collaborate on a Disability Confident Forum
- Autism Acceptance Week 2025: 2-8 April. The Action & Planning Group will lead on the development of the activities
Actions:
- Any activities we undertake in 2025 should come under the banner of ‘Autism Celebration Week’
- Promote week via Trading Standards for business https://www.safeplaces.org.uk/
- Consider working with businesses and educational organisations to have ‘autism friendly' stickers or an award that they can work towards to display
- Look at engaging with schools, colleges & universities to share good practice and do some events
- Look at engaging with the Sussex Assembly that do work around health care and wellbeing
- Consider some face to face and virtual sessions for those awaiting diagnosis
5. Other business
Digital Flag update
An easy read format presentation was circulated on 18 July. The ‘Reasonable Adjustment Digital Flag’ (RADF) is a national initiative being implemented by NHS Digital.
Key points below:.
- Usage of the NHS spine (National Care Record) to flag records for patients requiring reasonable adjustments
- Patients can request via form or when having consultations
- This has been communicated extensively to learning disabilities and autism teams within Integrated Care Boards
- It can be used by all patients with any disability including physical disability, mental health or hearing and sight impairments
- No diagnosis required
It was confirmed that a professional would need to go directly into a patients record to see the adjustments required
It was confirmed that the NHS Sussex Communications team is working with Local Authority Communications teams to do some joint campaigns to promote the flag.
Actions:
- An update will be given once system has gone live. Agenda item to be added to forward plan
AOB: no other business raised