APB Minutes - 20 February 2024

Autism Partnership Board Meeting

Time: 10.00am to 12.45pm

Venue: Microsoft Teams Virtual Meeting and St Mary’s House, Eastbourne

Chairs: Mark Stainton, Director of Adult Social Care and Health

1. Welcome, introductons and apologies

Mark welcomed everyone to the meeting, introductions were made, and apologies noted.

Mark confirmed that AD and DD have stepped down from the Autism Partnership Board. Formal appreciation and thanks given for their contribution over the years.

2. Agree minutes from previous meeting

The minutes from the meeting held on 07 December 2023 were reviewed and accepted as an accurate record of discussions.

3. Actions from previous meeting

It was agreed that actions 35, 36, 37, 39, 40, 41 be closed.

4. East Sussex Autism Action Plan

East Sussex Autism Action Plan

BVG shared a presentation which was distributed on 14 February. Key points below:

  • Autism Partnership Board to lead on the work.
  • Consultation will run from 2 April to 10 June.
  • APB meeting date for June will now be 24 July.
  • Action plan will be drafted by September.

Breakout rooms held to discuss the following:

  • What are 3 priorities for autistic people in East Sussex?
  • Which groups or communities should we make sure to include in the consultation?
  • For the focus groups: what is the best approach to ensure effective engagement with autistic people?

Feedback from the breakout room discussions:

  • Addressing health inequalities e.g. blood pressure checks and physical health checks for autistic people.
  • Autistic people and suicidal ideation/initiation. There are tools available which are not currently shared in Sussex. Need to be more current.
  • Pre/Undergoing/Post diagnostic support for both adults and children as often different. Right signposting/clarity of information i.e., community activities and group including mental health support e.g. there are no autism specific mental health pathways or recovery colleges, executive function support.
  • Education for autistic children. Raising staff and pupil awareness. Improved access to education and support for parents.
  • Support in the Workplace. Coaching and mentoring.
  •  Communication between teams e.g. outcomes following referral from the neurodevelopmental service.
  • Must include people who are marginalised due to protected characteristics such as race and sexual orientation.
  • Utilise groups that are already in existence for the consultations.
  • Essential to use a pure co-productive approach working in equal partnership,
  • Ensure people leading the engagement sessions and focus groups have the right skills to ensure people are empowered to engage.

IW noted that there is a strand within the Pan Sussex all age ND pathway looking at producing information around support. Consideration to work with the group on the information for autistic people.


  • Further comments were added within the meeting chat, which will be reviewed by BVG and added to the action plan where necessary.
  • Autistic people and suicidal ideation.  BVG to attend suicide prevention steering group and meeting with public health colleagues around the subject.
  • A message from the board to be developed to bolster people's likelihood of participating in the consultation and possible promotional video.

Autism Partnership Action & Planning Group volunteers (EOI)

Individuals interested in being part of the planning group put their names in the group chat.

ACTION: BVG to contact individuals wishing to be part of the Autism Partnership Action and Planning Group with next steps.

5. World Autism Acceptance Week 2024 Final Plan

BVG shared a presentation which was distributed on 14 February. Key points below:

  • World Autism Acceptance Week is 1 - 7 April 2024.
  • Deadlines have been assigned and working the WSC Communication Team.
  • Meetings with partners and providers have been held.
  • Agreements around both external and internal comms have been made. Examples below:
    • A Microsoft teams background will be developed by Roebuck
    • IGO videos to be shared via social media
    • Women & Girls case studies
    • Employment case studies – Little Gate, Ross Care
    • Signposting and media campaign for carers
    • Links to carers' hubs
    • NHS topics including autism health passports and hospital passports
    • Comorbidity cardiovascular health campaign

Community Mental Health VCSE organisations to be involved in the lunch and learn sessions.

SC confirmed that nationally health checks are being reviewed and that this is being looked at carefully for World Autism Acceptance Week. The ICB have created some specific information around blood pressure checks focused for autistic people and those with a learning disability.

MS confirmed take forward action with Chamber of Commence and if no traction, will take forward at a local level.

ACTION: EP to discuss with Carla Digital Flagging communication through the NHS.

6. Any other business

LEAP – MM is currently supporting the ‘Lived Experience Audit Panel’ which is part of the ‘All age neurodevelopment pathway’ in Sussex, to improve access to services and support for neurodevelopment conditions. Currently looking for individuals who would like to be involved in the workshops to ensure that work of the programme is relevant and important to those with neurodevelopment needs and their families.

ACTION: Anyone interested in getting involved, to contact MM directly

Eggtooth – Eggtooth is a charity based in Hastings, that provides networking groups for parents. It also provides therapy sessions such as art and music as well as cooking. There are both practitioners and therapist available. Further information can be found within the links below:




ACTION: JG requested CO’L to write an article about the help received so that it can be added to JC blog website New Home - My Kind of World

ACTION: CO’L to confirm which PCN is involved so that EP can understand roll out to see if this can be adopted wider. 

Autism Newsletter – BVG confirmed that a new autism newsletter will be launched shortly. Some branding is being created by an autistic artist from Roebuck as a project. Newsletter will be quarterly.

ACTION: If anyone has any information they would like to be added, to email apb.eastsussex@gov.uk. Email subject to be Newsletter.

7. LeDeR: Learning from Lives and Deaths - People with a learning disability and autistic people

EP shared a presentation which was distributed on 14 February. The aims of the project are:

  • Improve health and social care.
  • Reduce health inequalities.
  • Stop more people dying too soon.

Key points below:

  • LeDeR receive notification for every autistic person that had died. Currently those waiting diagnosis are exempt, however this is in review due to the known risk.
  • Life expectancy of an autistic person is considerably lower than the general population.
  • Avoidable deaths are an area being reviewed with cardiovascular disease being the main contributor.
  • There are ‘focused review priorities’ both nationally and regional.
  • 15 notifications since 1 January 2022.
  • Suicide is the most common cause of death.
  • The Core20plus5 reducing healthcare inequalities, helps when meeting the additional needs of the autistic population.
  • Funding in Sussex has been secured for cardiovascular disease.
  • Digital flags provide basis content about a patient, key adjustments, and further information to aid health and care workers.
  • Discussion held around the reporting and management of pain.

Key contacts

email sxicb.leder@nhs.net

website https://leder.nhs.uk

report a death LeDeR - Home

ACTION: If anyone would like to discuss further, please email EP.

8. The next meeting will be held on Wednesday 24 July 2024