APB Minutes - 14 March 2023

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Autism Partnership Board Meeting

Time: 10am to 12.30pm

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

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

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1. Welcome, Introductions and Apologies

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

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2. Agree minutes from previous meeting

The minutes from the meeting held on 5 December 2022 were reviewed and accepted as an accurate record of discussions.

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3. Actions from previous meeting

It was agreed that actions 7, 8, 9, 10, 13, 15 & 16 would be closed. Further information recorded as below:

The Neurodiverse Focus Group for the development of the Adult Social Care Strategy was held in December along with other focus groups. Six priority areas for the strategy were identified.

Terms of reference have been drafted and will be shared with the Autism Partnership Board (APB) after this meeting and will be discussed further at the next APB meeting.

ACTION: Terms of Reference to be added as an agenda item to next meeting

Publication of APB minutes

The minutes from all three meetings from 2022 are now on the East Sussex County Council website.

The job description for the Project and Engagement role which will support the Autism Partnership Board has been developed. This is currently with HR for approval.

There was a discussion on whether minutes from further back than a year should be published on the website because they contain information about the journey of the Autism Partnership Board. It was confirmed that once the new role is recruited to, the role will work on developing the Autism Partnership Board website to include links to resources and other useful information, which would be more useful than the minutes of previous meetings.

Oliver McGowan Training update

The Oliver McGowan e-learning training is now hosted on the East Sussex County Council (ESCC) learning portal so we are able to monitor uptake. 481 people have enrolled in the training and 388 people have now completed the training.

There was a question raised on whether the people undertaking this training were aware that this is just an introduction and asked whether there was additional in-depth training. It was confirmed that ESCC currently offer a range of additional more in-depth training, but once more is known about the level 2 Oliver McGowan 1 day training, it would be timely to review the whole training offer.

ACTION: Update regarding training to be added as an agenda item to next meeting

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4. World Autism Acceptance Week (27th March – 2nd April)

A PowerPoint presentation was circulated for review prior to the meeting.  A brief overview of the presentation was given.

Through collaboration with both internal and external colleagues, ESCC has developed a communications plan for World Autism Acceptance Week. This will be promoted through a range of social media platforms.

Internal messages to ESCC staff will focus on raising awareness of the training and coaching opportunities available to staff, along with further support and resources. External messages will include promoting and sharing national and local content, and sharing East Sussex case studies.

It was requested that cases are highlighted where autistic people are excelling very well in their profession. It was also requested that feedback from a parent carer would also be important.

Aspen’s Roebuck Enterprises has an Open Day as part of Autism Acceptance Week on Wednesday 29th March from 10:30-2:30. All welcome at the Roebuck Centre, Roebuck Street, Hastings, TN34 3BB. 

ACTION: Roebuck open day flyer to be shared with the group

Class+ is an ESCC service offered to families with children aged 5–16 with autism. The service offers telephone advice and guidance, coffee mornings, workshops and short-term support at home. The team will use their social media platforms to share autism related information during World Acceptance Week. Schools will also be involved in other projects.

It was proposed that the Board start to plan earlier for autism acceptance week in 2024. It was suggested ESCC could do something specific with businesses, such as acknowledgment of excellent/outstanding practice. It was agreed that starting to plan earlier for next year would be beneficial.

ACTION: Feedback from World Autism Acceptance Week to be added as an agenda item for next meeting

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5. Sussex Neurodevelopmental Pathway Programme

A presentation was given on the progress of the Sussex Neurodevelopmental Pathway programme. Work has been undertaken and the business case is being developed to manage the significant number of people waiting for neurodiverse diagnosis.

A separate business case is being developed for Adults and one for Children. The adults business case is being finalised this week for approval at the Sussex Integrated Care System Strategic Oversight Board.

There has been wide stakeholder engagement in the programme to date. A quality framework has been developed and the programme has looked at learning from other areas/good practice models.

A key challenge is how the current service provision work together. There is currently different activity and performance data across different systems and organisations. Also, a key challenge is finance and affordability of the future service model.

Next Steps:

• NHS England plan to share new guidance on Autism assessment pathway in 2023/24.
• The Children and Young People business case is due to be presented to the Sussex Integrated Care System Strategic Oversight Board in April 2023.

Group discussion:

 Feedback from Group 1:

• Reflected the importance of getting the right people in the right place to build capacity to deliver the pathway.
• Flexibility within the clinical and diagnostic model is needed, in particular for self-diagnosis and support.
• Recognised how labour intensive the pathway is, and the workforce needed to manage it.
• The enormity of the task was acknowledged.

 Feedback from Group 2:

• The review is welcomed and if people’s experiences are more consistent, that is good.
• The Group would like more information about the number of East Sussex adults and children on the waiting list.
• There were concerns raised about the lack of focus on transitions and suicide. (Particularly for individuals aged 14-18yrs)
• Some private diagnosis has resultant medication costs for the patient because often GPs will not accept these diagnoses.
• A question was raised about individuals with ADHD / Dyspraxia and the number of people this impacts.
• It was queried how newly diagnosed people can access services rather than having to wait for services to contact them.
• Concern raised about the lack of availability of post diagnostic support. The focus appears to be on diagnosis.
• Concern raised about current physical access to assessment, specifically around having to attend Brighton clinics for East Sussex residents and acknowledging the limitations of digital assessments.

 Feedback from Group 3:

• Concerns that autism can be overshadowed if individuals also have complex needs.  Every contact with a service user counts, potential to use a screening tool at first contact.
• Review of people who lost their lives waiting for a diagnosis of autism. A prompt diagnosis is important.
• Diagnosis early on will help to prevent further services being impacted (such as mental health) in the future.

It was confirmed that some of the concerns raised in group discussions are included within the business case, and further gaps identified can be reflected within the document. However, the business case options have already been agreed for approval by the Sussex Integrated Care System Strategic Oversight Board.

ACTION: Feedback from the group discussions to be shared with the Neurodevelopmental Pathway Programme Manager.

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6. Transforming Care Autism Team update

A presentation was given on the Transforming Care Autism team (TCAT) who are part of Sussex Partnership Foundation Trust (SPFT). The TCAT team supports autistic people either at high risk of admission to an SPFT mental health or specialist hospital, or who are ready for discharge from hospital and need support. The team has been operational since 2019 and is a small, multi-disciplinary team working across Sussex. The team includes clinical psychologists, occupational therapists, speech and language therapists and therapy assistants.

The team work with individuals who have been referred via their lead practitioner. They are either registered on the Learning Disability and Autism Programme Dynamic Support Register (DSR) or In-Patient log.

 Outcomes

• 250 referrals since operations started in September 2019.
• An evaluation of 41 clients discharged from TCAT in the 12 month period of July 2020 to June 2021 showed that in the 18 months following TCAT intervention, admission to beds had reduced by 1311 days.
• 82% of this cohort remain out of hospital.

 Challenges

• Lack of community placements with appropriately trained staff to meet complex needs/ higher support needs
• Capacity in wider system caseloads, Social Care assessments
• Training / knowledge / skills of other teams
• Capacity in diagnostic teams delays access to TCAT

 Discussion

It was confirmed that a referral must come from the lead practitioner from SPFT.  Due to the small size of TCAT, they are only able to take on acute referrals at present.

It was noted that there had been difficulty in accessing the specialist services especially if clients are still living at home. It was confirmed that there is the hope that the TCAT work can be shared and expanded through the Neurodevelopmental Pathway Programme discussed in the previous agenda item.

There was a question around what proportion of TCAT patients are from East Sussex. It was noted that there are a larger number of referrals from West Sussex, but it is in proportion to the size of the population in each County.

It was noted that peer support training would be very welcomed. TCAT currently has two days a week of this role which is shared with Brighton, but are keen to expand this through the Sussex Neurodevelopmental Pathway Programme.

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7. Any Other Business

The re-commissioning of East Sussex community mental health services is in development. Included in the review will be how best to support autistic people within these services.

ACTION: An agenda item on the commissioning of community mental health services is to be given at a future Autism Partnership Board meeting.

It was asked whether there could be a discussion at a future APB meeting about how other neurodiverse conditions such as ADHD fit with the Terms of Reference of the Board. It was noted that the Sussex Neurodevelopmental Pathway Programme includes autism, ADHD and other neurodiverse conditions.

ACTION: Terms of reference to be discussed at the June meeting.

Amaze shared information on peer support available in East Sussex. Parent/carer groups in East Sussex are growing and there is a new Heathfield group starting soon. Information can be found at: https://amazesussex.org.uk/parent-carers/services-and-support/face-2-face-befriending/

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8. The next meeting is to be held on Tuesday 20 June 2023.

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