APB Minutes - 7 December 2023

Autism Partnership Board meeting

Time: 1pm to 3pm

Venue: Microsoft Teams Virtual Meeting and Sovereign Harbour Yacht Club, Eastbourne

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

1. Welcome, introductions and apologies

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

2. Agree minutes from previous meeting

The minutes from the meeting held on 19 September 2023 were reviewed and accepted as an accurate record of discussions.

3. Actions from previous meeting

It was agreed that actions 22, 23, 28, 29, 30, 31, 32 and 33 would be closed. This meant that there were no outstanding actions to take forward.

Action: Referral activity for autism diagnostic pathway to include standalone figures for East Sussex. An update on this to be presented in a future meeting.

4. Terms of Reference (ToR)

The updated terms of reference were presented. Several of the changes link specifically around language.

The revised terms and reference where agreed. There will a review in December 2024.

Action: ToR review point in December 2024 to be added to the action log.

5. Autism Acceptance Week

A presentation was given on the proposed themes for the week 1-7 April 2024. They are as follows:

  • Employment – focus on careers and career paths including apprenticeships
  • Health
  • Education
  • Children and young people
  • Community and neighbourhoods

The presentation also included ideas around both internal and external communications, which included:

  • Lunch and learn sessions
  • Vlog from Autistic Leaders
  • East Sussex Youth Voice and East Sussex Young SEND Ambassadors
  • Pan-Sussex and national messaging and comms for carers
  • Local carer groups
  • Autism friendly hours in local shops and venues
  • Safer Places

Breakout rooms were created to discuss the following:

1. What key areas should be covered in Autism Acceptance Week, and in which priority?

2. Which ways are best to communicate important messages and information to the public about Autism Acceptance?

3. What are the outcomes the board would like to achieve through Autism Acceptance Week?

Feedback from the breakout room discussions:

  • Importance of celebrating those with autism and neurodiversity within the workplace. Additional idea of ‘any necessary support to help to allow you to achieve your potential in the workplace and be your best’.
  • Inclusion of the economic benefits of having neurodivergent (ND) people within a working environment and high retention.
  • Recruitment, retention, and progression. How can organisations ensure their processes play to the strengths and accommodate the challenges for autistic and ND colleagues so people can thrive and flourish in the work environment.
  • Employment information about rights at work and access to work. Look at reasonable adjustments.
  • Potentially look at a focus on health checks.
  • Understanding who needs to be involved regarding communication to ensure it is accessible to all.
  • Targeted workshop around recruitment and retention for HR departments and recruiters. Work with Chamber of Commerce and Association of small businesses.
  • Promote information about Community Networks. Improve and widen people’s experience and connections to their local environment, to improve people’s sense of belonging. Focus on Safer Places. Using community hubs (Hastings hub or VCSE).
  • Educating the community in the history of autism to rid myths.
  • Branding. Maybe an eye-catching background that could be used for MS Teams meetings. Consideration around using the different groups that members are connected to, to help design and deliver.
  • Work with NHS Sussex and Sussex Police regarding communication (Sussex Police have engagement plans and specific public engagement events).
  • Targeting businesses to identify autistic only spaces. Take it beyond statutory agencies.
  • Suggested outcomes included increasing sign-up to Safer Places and record number of people engaged. Also finding out if individuals with autism, other neurodivergent conditions feel more accepted and accommodated.

Current training is being delivered to GPs.

Action: To discuss further in 2024.

Action: To discuss with Chamber of Commerce.

Action: Update to be provided to members around the material available for recruiters. This to be linked into the Supported Employment Agenda.

Action: Update to be provided by NHS Sussex Comms and Public Involvement Team on the promotion of health inequalities and emerging themes.

Action: Update to be provided around branding and comms offer and support for Autism Acceptance Week 2024.

Action: To discuss the potential feedback form for after the event.

6. Sussex All Age Neurodevelopmental Programme update

A presentation was given on the current position of the Sussex All Age Neurodevelopmental Programme providing the following information:

  • An update following the emerging good practice review and Autumn 2023 system wide stakeholder workshops
  • Draft system-wide neurodevelopmental model for Sussex
  • Key areas recommended for further development for the NHS Sussex and system consideration
  • Next steps

It was noted that work is still in progress to obtain accurate East Sussex referral and assessment numbers and waiting times.

Action: Future agenda item to discuss information when available.

The recommended areas for further development include:

  • Streamlined assessment and diagnosis approach for children and young people
  • Consistent assessment and diagnosis approach for adults
  • Single NHS front door for referring to assessment
  • ‘One Stop’ support
  • Coordinated ‘Point of Access’
  • Post assessment support
  • Digital opportunities
  • Training practitioners outside of existing neurodevelopmental services (for example mental health professionals who may see patients with both mental health and ND conditions)
  • Adapted Portsmouth profiling tool
  • Primary care support for assessment and ongoing care.

Feedback from the breakout room discussions:

  • Slides were not accessible generally and particularly for autistic and ND audience.
  • Not to undervalue the importance of the assessment.
  • Understanding required around whether other neurodivergent conditions such as dyslexia and dyspraxia will be included.
  • Self-assessment and information gathered prior to assessment to avoid delays at assessment stage.
  • Alongside recommendations and modelling it would be good to have clear actions and measurable outcomes.
  • Geography. Question raised around location of clinics. Importance of environment being autism friendly to ensure the experience is less of a challenge.

7. Any other business

National Autism Training Programme. A 3-day training programme is available which is complementary to the Oliver McGowan training for NHS. National Autism Trainer Programme (NATP) | Anna Freud.

Further discussions around whether this training can be opened to other organisations.

Lived Experience Advisory Panel. NHS Sussex is establishing a panel to inform the Neurodevelopmental Programme. Also, looking at what forums already exists and how to use these spaces to feedback into the programme. Anyone interested in finding out more regarding the Lived Experience Advisory Panel to contact matthew.moors@nhs.net.

APRIG (Autism Pathway Review and Implementation Group) leaflet. This leaflet was developed to support those waiting for diagnosis. Questioned whether the leaflet is still available and relevant. It was confirmed that while the leaflet has been updated, current service offers may not have been included. Any questions relating to the APRIG are welcome. Additional information needs to be included.

Action: The APRIG leaflet to be reviewed and information around Amaze’s service offer to be included.

Prevention of suicide. A question was raised as to whether the Autism Action Plan will be adequately funded to prevent suicides for autistic individuals including those on the waiting list. Work has begun with the Safeguarding Adults Board so this can be addressed then. This concern will also be raised with the Suicide Prevention Board. Look at what is currently in place and to build on that.

Action: Formal update to be provided at the next meeting. Suicide Prevention Board feedback to be provided too.

8. The next meeting is to be held on Tuesday 20 February 2024