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Meeting Details
Date: Tuesday 26 March 2024
Time: 11:00 – 13:00
Venue: Microsoft Teams Meeting
Agenda Item: Pre-Meeting Support
Agenda Item 1 : Welcome and Introduction
1.1 Board Members were asked to introduce themselves in the Teams chat function
1.2 Welcome and introductions made. Communication prompts posted to the Teams Chat window, and their use explained. No reasonable adjustments were requested. Members reported no declaration of
interest.
Minutes and action log approved by the Norfolk Autism Partnership Board (NAPB)
Code of Conduct to be monitored by Lee Gibbons
1.3 Action: To keep in contact with Tracey Wooldridge regarding further updates to the Care, Education and treatment review (to be expected in the early 2024)
Outcome: Ongoing
1.4 Action: Seek a formal response regarding non-NICE Compliant Assessments
Outcome: Request for Claire Angell to take action as this would sit better in her remit
1.5 Action: To find timeframes out for Autistic representation on the LD & A Programme Board
Outcome: NAP now has representation on the Learning Disability & Autism programme Board
1.6 Action: To arrange a presentation on the purpose and structure of the LD & A Programme Board
Outcome: Unable to secure an LD & A representative to carry over to next meeting.
1.7 Action: To publish:
-Introduction to a Social Care Conversation (2 pages long)
-Guide to a Social Care Conversation (Longer document with space for notes)
Outcome: These documents are now published on the NAP website under the ‘Autism Information section
1.8 Action: Circulate Draft All age autism strategy refresh to all board members.
Outcome: Document circulated on the 16th April 2024
Agenda Item 2 : Diagnosis Waiting List Updates
2.1 Adult Diagnosis (without a Learning Disability)
- Annual average referrals of 92 each month
- Total number of adults waiting 1041
- Average of 17 assessment a month
Waiting period breakdown:
- 0 people waiting longer than 200wks
- 11 waiting between 200-104 weeks
- 318 waiting between 104–52 weeks
- 541 waiting between 52-18 weeks
- 71 Less than 18 weeks
2.2 Adult Diagnosis (without a Learning Disability)- Year on year comparison of total numbers waiting
- Jan 2020 – 486
- Jan 2021 – 665
- Jan 2022 – 915
- Jan 2023 – 740
- Jan 2024 – 1029
In Feb 2024, the total number of adults waiting assessment is 111.7% increase from Jan 2020.
2.3 Adult Diagnosis (without a Learning Disability)- Year on Year comparison of demand for
assessment
| Average monthly referrals | Total Refferals | % change since previous year | |
| 2020 | 28 | 339 | N/A |
| 2021 | 49 | 584 | 75% |
| 2022 | 79 | 950 | 61.20% |
| 2023 | 90 | 1081 | 13.90% |
2.4 Adult Diagnosis (without a Learning Disability)
- A total of 204 additional assessments commissioned through The Owl Centre and Mind Professional Ltd. The Owl Centre is working with Autism Service Norfolk and Mind Professional is working with Children and Young People service.
- Commissioners continue conversations with procurement regarding re-engineering diagnostic pathways in line with procurement regulations, to commission the service from March 2025. Analysis began to look at the diagnostic feedback received through the Autism Strategy to identify what is important to people.
- There has been additional funding allocated to offer approximately 100 additional assessments for adults in addition to the 204 assessments already commissioned
2.5 Question: When will these additional assessments start?
Answer:
- MIND have just sent out letters to those who are eligible with details of the options available to them
- Owl centre isa currently working with Autism Service Norfolk. The Diagnosis and Support working group are finalising the wording on the letter to be sent, to make sure they are appropriate for autistic people., The aim is to begin sending these in batch from mid-June with an aim to complete the send out of letters
by the end of this year.
2.6 PDA Update
A shared understanding of Pathological Demand avoidance has been created by the Diagnosis and Support working group with he input from partners and diagnostic services.
Action: The Board are asked to agree to this shared understanding in principle, with a final copy of this
document sent out after the meeting. Any objections to signing off this document need to be emailed to
Tracey Walton (tracey.walton@norfolk.gov.uk) before the 30th May.
Action: Once fully agreed this document will be available on the NAP website with a link to the PDA Society
2.7 Question: Will PDA be included in the new service specification for the diagnostic service?
Answer: PDA will not be named explicably, however as a profile of autism spectrum disorders it should be
considered and assessed in all autism assessments
2.8 Question: If an autistic person reads the document and notices similar behaviours in themselves, would
they need to be/could they’re assessed to look at this profile?
Answer: The person autism diagnosis would not be reassessed, but they would be encouraged to find other avenues of support and resources.
2.9 Comments around the need to just be weary of creating a demand for something that we do not have
the services or resources to currently support in Norfolk and the strain this may place on existing and
additional services.
2.10 Children and Young People
Due to ongoing contract negotiations with providers this information is currently unavailable.
2.11 Children and Young People- Year on year comparison of total numbers waiting
These figures for James Paget Hospital:
- Jan 2020 – 228
- Jan 2021 – 428
- Jan 2022 – 226
- Jan 2023 – no data
- Jan 2024 – 1993
In March 2024, the total number of children and young people awaiting assessment is over 330% higher than in 2019 levels. Please note March 2023 figures not included.
2.12 Children and Young People – Year on Year comparison of demand for assessment
| Average monthly referrals | Total Refferals | % change since previous year | |
| 2019 | 84 | 1008 | N/A |
| 2020 | 102 | 1224 | 21.4% |
| 2021 | 144 | 1728 | 41.2% |
| 2022 | 229 | 2748 | 59% |
| 2023 | 264 | 3168 | 15.3% |
2.13 Children and Young People- New Priorities for action
- During 2024/25 a redesign of the offer of support available to those who are likely to be neurodiverse.
- Medical diagnosis should be an option only within a successful needs-led, flexible education and care system that improves outcomes for children and young people and supports families to manage the diverse experiences of their children, improving resilience and reducing duplication on multiple
professional teams.
2.14 Children and Young People – System Collaborative Programme
- A formal programme and project team is being created to address the gaps in support and barriers to accessing it for children and families.
- Children and young people services intention is to provide holistic and integrated services.
- Shift the culture and understanding of neurodiversity and meet the needs of children and young people, focusing on things that help.
- Broadening the commissioned model for assessments could alleviate pressure on our existing NHS pathways.
2.15 Children and Young People – PINS whole school approaches
NHS England, has invited expressions of interest from
local systems to access over £200,000 in external
funding. This Partnership for Inclusion of
Neurodiversity in Schools (PINS) programme will
bring health and education and parent carers into 4
Waveney mainstream primary settings to:
- help shape whole school SEND provision.
- provide early interventions at a school level.
- upskill school staff.
- support strengthening of partnerships between schools and parent carers.
2.16 Children and Young People – Neurodiversity Digital Library
- ICB is working with parents and carers and Cambridgeshire Community Services to develop a Neurodiversity digital library.
- The plan is to publish this library later this year.
2.17 Children and Young People – Provider framework to establish quality mark for Norfolk and Waveney
- ICB has launched a procurement to expand the number of providers who can assess children in Norfolk and Waveney.
- Quality benchmark for our footprint and give greater confidence to education, primary and community care colleagues on the efficacy of independent assessments undertaken for families.
2.18 Question: What is the reason for the significant increase, especially from Jan ’22 – Jan’24?
As Clare Angell was not present at the meeting this question will be passed onto her to respond
2.19 Question: Regarding PINS (Partnership for Inclusion of Neurodiversity in Schools) how does this become practicable and how is it going to function?
Answer: As Clare Angell was not present at the meeting this question will be passed onto her to
respond.
It can be assumed that this is a national project based on evidence and that there will be framework and
guidance about its delivery.
2.20 Question: Is it possible to show the waiting time for Children and Young People in a similar way to how we receive waiting times data regarding adults?
Answer: As Clare Angell was not present at the meeting this question will be passed onto her to respond.
Comments were made about the difficulty due to current reporting and contractual agreements between commissioners and providers.
Members have asked for general idea of the waiting periods so that the partnership board has some idea
of the waiting times for Children and Young People.
2.21 Question: Do the NHS waiting time targets apply to Children and Young People as they do Adults?
Answer: There was a consensus that they do. A link was posted in the chat regarding 6+ year assessments detailing their expected wait times. (Currently 4-5 years for 6+ / up to 3 years for Pre- Years)
There were comments that if the target was the same as adults, then something drastic needed to be done
as the currently waiting times are far exceeding the targets
Agenda Item 3: Co-production of the Norfolk Autism Strategy Refresh Delivery Plan
3.1 Signing of the Strategy
These are steps that have been or are currently in the process of being taken to sign off the Norfolk All Age
Autism Strategy Refresh 2024-2029.
The NAPB members have signed of the strategy (30/04/2024)
TW and KD have currently got endorsements and sign of from:
The Prison service
LD & A Programme Board
ICB Public Board (they have requested a 6 monthly update from the NAPB)
The Strategy is due to go to Cabinet mid-July
The Health and Well being Board are asked to:
- adopt the strategy
- ask that partner organisations work with the NAPB, by putting in place a yearly plan and report on progress
- Review the yearly plan and manage high level issues and risks raised by the Board.
3.2 Proposal to put into place and monitor a yearly plan
Partner Organisations (by 31st Aug 2024 then annually)
- will provide a yearly plan that details the actions they will take to deliver the
priorities of the strategy - identify an owner for each action detailed in the plan.
Action Owners (by 31st August then bi-monthly)
- by 31 August 2024 for their assigned action complete the NAPB Monitoring template
- bi-monthly update the NAPB Monitoring template
Strategy Group (Monthly until Oct ’24 then Bi- Monthly)
- provide a yearly plan based on what organisations and owners provide
- meet bi-monthly to review the Owners’ NAPB Monitoring templates and discuss any issues/risks to propose actions for the Board
- provide a bi-monthly year 1 progress report to the NAPB.
NAPB (Bi-monthly and annually)
- put in place the strategy group that will be supported by Tracey and Karen
- sign off the Year 1 plan
- bi-monthly review the strategy groups progress report
- decide on any actions to overcome issues or risks raised and acknowledge actions completed and their impact.
3.3 The Autism Strategy Reference is due to meet on the 29/05/2024 to discuss how to launch the Norfolk All Age Autism Strategy Refresh 2024-2029.
3.4 Question: Will the General Election hinder/prevent any of the proposals with regards to signing off
through the governance structures?
Answer: The General Election should not have any effect on the proposed plans; however, we need to be
mindful of the potential cabinet members cannot use the strategy to their advantage.
3.5 We need sign up and endorsements from NSFT, due the action points and feedback we received around Mental Health provision for autistic people.
Question: Can the NAPB do anything to support this?
Answer: At the current time, but we may need to escalate this to the LD & A programme board if we come up against significant barriers.
A member of the board mentioned that it may be worth writing to the new Chief Executive of NSFT.
3.6 Question: Is there a contingency plan in place in case this approach to monitoring the plan does not go accordingly?
Answer: If this was to happen the Autism Strategy Reference group would need to consider a variety of options to bring back to the NAPB.
3.7 Proposal: Does the Board agree the proposed process to deliver and monitor the strategy
plan?
Agreement from the board members
Agenda Item 4: Break
4.1 A 10 minute break was held
Agenda Item 5 : Learning Disability and Autism Programme Board
information and update
5.1 Agenda Item moved to next meeting
Agenda Item 6 : Research Project Update
6.1 KD provided us with an update and results from the Short term research project into Social care for
Autistic adults.
6.2 This was a short term research project supported by University of east Anglia, Norfolk County Council and the Norfolk & Waveney ICB Research Capability Funding (RCF). RCF supports researchers to scope out research ideas, so that a bid can be made to the National Institute of Health and Care Research for a larger
grant for longer-term research.
6.3 The project aimed to understand more about:
- the needs, wellbeing and quality of life of autistic adults in Norfolk
- how we can measure this to evaluate effectiveness of the Norfolk Autism Adult Support Service (the new short-term service for autistic adults with emerging social care needs).
6.4 There were three sections to the research project:
Set up Autism Research group
- 5 autistic adults
- Met once a month from November 2023 to
March 2024 - Oversaw and supported development of the
project - Ensured an autism perspective.
Scope Review (Findings)
- There is very little research into short term and other services for autistic adults
- Some studies suggest positive impacts, but more research is needed
- There are some services similar to Norfolk’s in other parts of the UK. There is potential to
share learning, and to compare models - There are many different quality of life measures, which vary in how accessible and meaningful they are for autistic people.
Survey
- To find out about the needs, wellbeing and quality of life of autistic adults in Norfolk
- To test tools for measuring wellbeing
- Survey opened in January and closed in February 2024
- 119 full responses
6.5 We asked autistic people what outcomes they would like a support service to provide
The top answers were:
- Feeling in control of day-to-day life
- Having a safety net when things are not OK
- Having improved health and wellbeing
6.6 We asked autistic people what might stop them from accessing a support service
The top answers were:
- Not knowing what might be involved
- Feeling anxious about using a support service
- Previous bad experiences of using services
6.7 Autistic people were asked to complete a World Health Organisation Standard Quality of Life
Measure
The scores are similar to those generally found for autistic adults in the UK, but lower than for the
general population.
People also rated their quality of life using an Autism Spectrum Quality of Life measure
In each area about half of people reported that they were experiencing notable challenges.
Only 27% of people were happy with their current friendships.
We asked people for feedback on the 2 measures
Most people said they were easy to use, and felt the questions were relevant, especially for the autism
measure.
6.8 Learning for the Norfolk Autism Adult Support Service
- We have shared what people told us is important to them, and they are looking at how they can use this information to develop their service.
6.9 Applying for a grant from the National Institute for Health and Care Research to enable a longer- term evaluation of the service
- The project showed that more research is needed into effective ways to support autistic adults to improve their wellbeing and prevent needs from increasing
- The survey provided evidence of the kind of outcomes that will be important to evaluate, and the measures that can be used
- We hope that providing research evidence about what works well (potentially also including evidence from other areas) will enable the service to expand and develop in future
6.10 It was noted that while a responses of 119 was a good result this only reflects a small percentage of
autistic people within Norfolk. Therefore, caution should be used if the commissioning of any services are a result fo these results. It was explained that the results of this research project would not be used to commission new services.
As with all research projects it is often those with the greatest need that do not engage. For a larger research project this would need to be taken into consideration.
6.11 Question: Will the data be presented differently in the report?
Answer: The measures used are standard measures and therefore the data needs to be presented in a way that reflects this, if we stray too far it no longer becomes a standard measure and could hinder any cross-research projects or understanding of the data. The Autism Research group have worked on making the data and information as accessible as possible.
6.12 Question: What is the likelihood of PDA affecting participation in autism-based surveys and research
programs? Is there research into this?
Answer: There was no specific brief to investigate this as part of the scope of the research project. Researcher to be asked if they came across anything in the scoping review.
6.13 Question: Are there plans to share this information to a wider audience? Autism organisations? Autistica for example?
Answer: At this current time there is no proposal to share this data wider.
6.14 Question: Who owns this research and data?
Answer: There is no definitive owner. The research was funded by the Norfolk and Waveney RCF, although it is better to look at this research as a partnership as opposed to one organisation.
6.15 Question: When the project report is published on the Norfolk Autism Partnership website can it be
taken to other forums?
Answer: Yes, this research project can be taken to local forums although it wouldn’t be suitable to go to national forums or originations.
6.16 Question: When the project report is published on the Norfolk Autism Partnership Board website can
people send comments regarding its content?
Answer: Yes, there is multiple ways for people to contact the Norfolk Autism Partnership through the website. There would not be a public comment section in relation to this research project.
6.17 There was a suggestion for a member to load this research project on to the NCC Insights Library. This
is managed by Alex Cox and an email can be provided if required
6.18 Ask of the Board: Can the project report be published on the Norfolk Autism Partnership
website?
Agreement from the board members
Agenda Item 7 : Any other business
7.1 No other business was raised
Date, time and location of next meeting
Tuesday 30th July 2024 11:00-13:00 (Microsoft Teams)