Autism Partnership Board minutes - December 2025
1. Welcome, introductions and apologies
Mark welcomed everyone to the meeting, introductions were made, and apologies noted.
Mark acknowledged that TC-G has now stepped down from being a board member. A letter will be written expressing the board’s collective appreciation for her contributions.
2. Minutes and actions from last meeting
The minutes from the meeting held on 15 September 2025 were accepted as an accurate record of discussions.
Actions 79, 87 – 92 and 94 were be closed. Updates were shared on open actions and the log updated accordingly.
Action: Follow up with Joyfully Different regarding action 66
3. Update from Action and Planning group
EW provided a comprehensive update on the action plan. Key developments include:
- The launch of the ‘Neurodivergent News’ newsletter which was distributed on 11 December
- Delivery of the health passport webinar on 8 December: Supporting people with health and care passports webinar
- Health passport page on Health and care passports | East Sussex Local Offer
- A video has been created to provide people with information to help them choose from the different passports, which are tailored to various needs.
- Employability support collaboration – EW has been working with People Matter to create an access guide for a jobs fair. Aiming to make such guides more widely available for neurodivergent attendees.
The communication team will be doing a promotional push of the health and care passports over the next few weeks.
Individuals shared personal experiences of using passports in healthcare settings, noting a lack of recognition by professionals along with other barriers and the need for visible prompts such as posters that they acknowledge the passports.
There is acknowledgement that this is an area of concern and EW has been working with ‘early adopters’ such as Bexhill PCN. Face-to-face meetings have been held and they have committed to all staff undertaking the training.
SL confirmed that she had emailed the operational managers' forums and practice managers' forum for social workers to make them aware of the video.
Actions:
- Any interest in co-production of next ‘Neurodivergent News’ to be sent to APB@eastsussex.gov.uk
- Draft a communication for trust chief executives and clinical directors of all primary care networks to raise awareness and understanding of health and care passports.
- Include information about health and care passports in the provider bulletin (such as care homes and supported living providers) and repeat the message with a gap in between to maximise reach.
Create a 'top tips' email to hiring managers (approx. 500 employees) to highlight the 'DWP Health adjustment passport' and encourage engagement with the video resource. - Take the 'DWP Health adjustment passport' and related resources to the six Skills East Sussex task groups and add it to their agendas for wider employer promotion.
- Include health and care passport training within the Oliver McGowan training.
4. Autism Week plan
EW led a discussion on the plans for Neurodiversity Celebration Week, detailing the rationale for event timing, proposed programme structure and content. Breakout rooms were held to discuss the main event at the Towner Gallery including naming, accessibility, and marketing.
Key notes from breakout rooms:
- 'Unity in Diversity' emerged as a preferred option, and discussed the importance of accessible design, clear fonts, and inclusive language
- Suggestions included ticketing via Eventbrite to manage numbers
- Workshop area: ensure activities are not overwhelming. Consider fewer activities.
- Provide quiet spaces for attendees.
- Proposals were made to showcase autism champion.
- Involve speakers with lived experience.
- Integrate feedback from various stakeholders into the event
Actions:
- Put together revised event name and logo options based on feedback and take them to the working party for final decisions.
- Follow up with Runway to invite the engaging lived experience trainer (Sean) to present about Oliver McGowan at the event.
5. NHS Neurodevelopment pathway programme
SG from NHS Sussex presented an update on the neurodevelopmental pathway, addressing concerns previously raised by the Autism Partnership Board about autism data discrepancies, ongoing pathway development, and plans for improved support and communication.
Data position
- SG explained that differences in reported waiting times and referral rates are largely due to inconsistencies in national and local data sets, with East Sussex not being an outlier but affected by data reporting structures.
- SG described current support options for children and families while waiting for diagnosis, the limitations of routine contact due to resource constraints, and ongoing efforts to improve information provision.
Neurodevelopment pathway programme
- The neurodevelopmental programme is piloting needs-based approaches, new tools in schools, and a specialist primary care pathway for ADHD and autism, with pilots starting in key areas and plans to expand based on evaluation.
- SG announced the extension of key worker and autism in schools’ contracts for two to three years, providing stability for staff and continuity for service users.
Board members highlighted the need for improved communication with those on waiting lists and better post-diagnosis support.
SG confirmed that with collaboration with LEAP, communication is an area that is being reviewed.
Whilst the SPFT pathway is clinical, the Primary Care Specialist Hub is the point of contact and follow up for those without clinical need, as well as the digital self-help post diagnosis which is being developed.
Actions:
- Article to be developed for the next ‘Neurodivergent News’ newsletter to enhance messaging of the work being undertaken.
- Presentation to be shared with papers.
6. Review of terms of reference
SC confirmed that we are committed to reviewing the terms of reference (TOR) annually as part of the Partnership Board.
There have been a few minor changes to make the language more accessible.
SC highlighted the expectations of board members within section 5.
CF suggested the possibility of the opportunity for people with lived experience to meet pre and post meetings for additional support.
Action:
- Review TOR and amend errors, adding the pre-post support. Circulate so that they can be signed off during next APB meeting.
7. NHS Oliver McGowan training
CF provided an overview of the Oliver McGowan training programme. This included its implementation across Sussex, collaboration with local partners, and the integration of lived experience in delivery.
Key notes:
- The training is mandated for all health and care staff, with tiered delivery (e-learning and seminars) and a focus on reducing health inequalities for people with learning disabilities and autism.
- The rollout involves executive awareness sessions, funding allocation to partners, and a trainers' collaborative, aiming for sustainable delivery and local employment opportunities.
- Training is delivered by people with lived experience, with emphasis on their welfare and the development of local expertise.
- Discussions are ongoing to ensure the new programme complements established local training, particularly in East Sussex, and to coordinate funding and delivery
- The programme aims to reach large numbers of staff, with aspirations to extend mandatory training to education settings in the future
It was acknowledged that meetings are being held to understand what this looks like for East Sussex, bearing in mind that the current learning disability training and autism training in East Sussex is well established.
Actions:
- Update to be provided during next APB meeting.
- If anyone has any suggestions for those to attend the executive sessions, email APB@eastsussex.gov.uk
- Presentation to be shared with papers.
8. Any other business
Carer’s blog
Emma shared an invitation on behalf of Jane Caygill for partners to collaborate on a carer's blog, encouraging interested members to get in touch through APB@eastsussex.gov.uk
Actions:
- Consideration to be given to the change of the meeting in March as this falls within Neurodivergent Week.
- Future agenda item - explore clinical and peer support options post-diagnosis.
2026 meeting dates
- 19 March: St Mary’s House, Eastbourne, room SMH102
- 22 June: St Mary’s House, Eastbourne, room TBA
- 24 September: County Hall, Lewes, room TBA
- 3 December: St Mary’s House, Eastbourne, room TBA