APB minutes - 10 March 2025
Autism Partnership Board
Time: 1pm to 3.30pm
Chair: Sam Williams, Assistant Director Strategy, Commissioning and Supply Management
1. Welcome and apologies
Sam welcomed everyone to the meeting, introductions were made, and apologies noted.
2. Minutes and actions from previous meeting
The minutes from the meeting held on 26 November 2024 were accepted as an accurate record of discussions.
Actions 51, 54, 57, 61, 64, 65, 68, 69, 70 & 71 to be closed. Key notes below:
Action 34: Autism diagnostic pathway
We now have children and young people’s data, however, still waiting on adult data. Further understanding required around the data and definitions. This is still ongoing.
Action: Standing agenda item regarding data to be added to meetings moving forward.
Action 51: Suicide Prevention Board
Positive input has been received from public health colleagues. The next stage is to develop a project brief to outline how the facilitated sessions will be held. This action has been closed and new action raised (72)
Action: Agenda item regarding Suicide Prevention to be added to forward plan.
Actions 55, 56, 58, 59 & 66: Autism Acceptance Week
It was agreed that these items will be focused on for Autism Acceptance Week 2026. Due dates amended accordingly.
Action 61: Autism Prevalence data
SC confirmed this has been followed up with those responsible for the Sussex Integrated Dataset where the data was extracted from.
Unfortunately, it is not possible to accurately reflect non-binary autistic individuals from the dataset. The data provided is sex at birth data. There are some instances in which the sex has changed for a patient, but it is not known how accurate the data recording is.
Action 64: Autism Prevalence data
Information about the links between physical health and autism was shared. This has been reflected in the Equalities Impact Assessment and will inform the Autism Action Plan delivery plan. KM mentioned that is it important when talking about physical health, the early death statistic for autistic people.
Action: 2024/25 LeDeR report on early deaths of those with learning disabilities and autism to be added as a future agenda item
Action 69: Autism training
Meeting was held between AC and TCG on 7 March to discuss training.
3. Autism action plan
The draft 'Autism action plan' was circulated with meeting papers. The plan was received well by the Corporate Management Team. Next step is approval from Lead Member for Adult Social Care and health on 11 March and Lead Member for Children’s Services on 25 March.
The plan has also been shared with NHS colleagues.
There are 26 actions across the three priority areas:
- Health and wellbeing
- Education
- Employment.
Labelling and language: It was raised that autism could be seen potentially as an umbrella term for other forms of neurodevelopmental needs such as ADHD and dyslexia.
The NHS Sussex Neurodevelopmental Pathway Programme Lived Experience Advisory Panel have developed a language guide with a useful glossary.
There was a discussion about the inclusion of criminal justice data. Although the links between neurodivergence and the criminal justice data is of interest, the plan focuses on the three key priority areas identified through the consultation. When resource allows, it was agreed the Board would explore this area in more detail, noting potential links to the Safer Communities Partnership and Prevention Strategy.
Actions:
- Add a paragraph to the Autism action plan introduction recognising the links and co-occurrence between autism and other neurodivergence.
- Agenda item regarding criminal justice to be added to forward plan.
4. Autism Acceptance Week
SC shared a presentation which was circulated with meeting papers, key points below:
- The focus of 2025 communication will be the promotion of the Autism All-Age Action Plan. There will be a HTML version available on the East Sussex website. An easy read version will be available; however, this will not be ready until the end of April.
- Information was shared regarding use of both internal and external communication, using media such as ‘Your East Sussex’, Local offer pages and Viva Engage.
- For education and schools communications, there will be daily news stories on social media platforms. A resource pack will be sent to schools.
Actions:
- External comms. Promote Amaze and in particular the ND Family Support Service
- Gather feedback from JG (SEDSConnective) regarding Neurodivergent Day (11 March) which can be shared during Autism Week
- Share information regarding peer support group in Hastings
Decision: Poll was undertaken, and it was agreed that we will promote under the banner of ‘Autism Week’
5. Other business
NHS Sussex Neurodevelopmental Pathway update
SR shared a presentation which was circulated with meeting papers.
Key points:
This programme focuses on autism and ADHD. It has 3 priorities:
- Introducing a needs-based approach to support people irrespective of diagnosis and associated reduced demand on this element of the pathway.
- Clear and streamlined access to services and support, including digital support.
- Streamlined approaches to assessment and post assessment across NHS services; and training more practitioners, primary care and mental health, to increase assessment capacity.
- The Dimensions Tool (strengths based) will be used in East Sussex for children and young people. Pilot will commence in Term 4. Note: the tool is currently still in development and hosted by Coventry and Warwickshire so only national signposting is available. It is hoped that in the future we will have a local version which would link to local services and resources. The tool has been shared with the lived experience advisory panel for adults. Feedback included that it is a lot for a person to undertake, so needs to be embedded into services. However, overall, positively received.
- Partnership for Neurodiversity in Schools (PINS) programme to deliver co-produced neurodiversity support to primary schools across Sussex in 24/25. There is a nationally led evaluation planned for spring 2025.
- Clear and streamlined access to services and support. Work has been undertaken to review services’ websites to ensuring that they signpost and provide accurate information.
- A Lived Experience Advisory Panel (LEAP) has been established to support the programme to support co-production and inform the programme, alongside sharing learning and championing the programme, the LEAP has co-produced a communications plan to support the programme. A Children and Young People’s NDP Communications Task and Finish Group has been established to coordinate this work.
There was discussion relating to neurodivergence training amongst professionals, and that there is around 80 people trained within SPFT to deliver the National Autism Trainer Programme (NATP) training.
Actions: TCG to share list of those trained (SPFT) to deliver the NATP training with SR when available
Breakout rooms, key points:
- Concerns in the community around right to choose (RtC) and shared care relating to medication supply, so keen to hear and see the fact sheets and information around this.
- Thoughts around the profiling tool and that whilst a good idea, important to ensure its not a tick box exercise.
- Young person language. Important to ensure that the language used is clear, as a young person may be classed as an adult in another setting, especially when supporting people through transitions dependant on age.
- Discussion around whether it was better to have a diagnosis or have a needs-based assessment. It was noted that it is not uncommon for GPs to insist that after a private or RtC diagnosis, the person must attend an NHS psychiatrist/ Neurodevelopmental service, thereby defeating the point of RtC.
- Discussion around the 60% GPs nationally that are refusing shared care. Be good to have an understanding on what the local position is relating to this.
- There needs to be more transparency around waiting times.
SR clarified there will be a workshop held to look at the pathway and assessments for adults.
Any other business
Recruitment update: Emma Waring will be starting during the first week of April as the Autism Project and Engagement Manager, with a focus on implementing the action plan working with all our partners involved.
Autism Week 2026: it would be good to look at holding an in-person event around employment, working with the Chamber of Commerce and Genuis Within to share information around reasonable adjustments and assistive technology.
There is a national conference being held in April: Neurodiversity in Business
2025 meeting dates
- Monday 16 June
- Monday 15 September
- Monday 15 December