Meeting Details
This meeting was to solely discuss the Norfolk All Age Autism Strategy 2024-2029
Date: Tuesday 26 March 2024
Time: 11:00 – 13:00
Venue: Microsoft Teams Meeting
Agenda Item: Pre-Meeting Support
Agenda Item 1 : How the NAPB Refreshed the Strategy
1.1 TW gave the Board an updated on how the draft strategy was refreshed
July to Dec 23 – Set up an Autism Strategy Group made up of autistic people to oversee the refresh of the strategy.
July to Sept 23 – Autism Strategy Group designed and tested. A document, animation and easy reads to share what the strategy achieved over the last 5 years and what partners plan to do over the next 5 years.
- an online questionnaire and workbook, to find out what is important to people.
- a webpage to share the communications.
- a plan of how to encourage people to take part.
Oct to Nov 23 – Documents, questionnaire and workbook available through the Norfolk Autism Partnership website
Jan to Feb 24 – Autism Strategy Group arranged activities to share and understand better what people said is important and check if anything is missing.
Mar – Apr 24 – Autism Strategy Group analysed the feedback to agree the Norfolk All Age Autism Strategy’s key priorities and wrote the strategy and plan.
May – June 24 – To share the strategy with all Board members and partners.
Agenda Item 2 : Feedback Approach and Overarching themes
2.1 The approach to how the feedback was received and
managed was explained:
- The Full Summary version of the strategy was issued to members in advance of the meeting with an ask of members to read and respond by email with their feedback in advance of the meeting.
- Responded to everyone who has provided feedback.
- Made some changes to the draft strategy:
Simple changes for example adding links, such as adding a link to the current strategy. Slight changes to wording to provide clarity, such as health checks not currently available in Norfolk and clarifying the wording of My health passport recognising there are different hospital passports. Additional data where this has been provided by a reliable source or is available in the public domain. - No change proposed:
The feedback is about the delivery plan, such as putting in place supported work experience
for autistic children. Not within the remit of the strategy, such as banning all exclusions for those with SEND. There is no supporting evidence to include information, such as data that is not provided
by a partners or is not available in the public domain. - Themed feedback for discussion with Board members.
Where more substantial changes have been suggested, we will share these today and seek agreement from Board members to make the changes. - Different formats
The Autism Strategy Reference group advised it would be good to have the full strategy in a
similar format to the summary. This may make the strategy much longer, is there a view on this
as no feedback was received.
Everyone who provided feedback had received a personalised response from TW / KD regarding it’s inclusion or reason for not adding to the refreshed strategy.
2.2 The Board discussed about having the full version of the strategy in a similar format to that of the Summary which was approved by the Autism Strategy Reference Group.
The were a preference expressed that the full document should be plain text and not include photos/images similar to that of the summary. Agreement to provide the Full Strategy in plain text with no images or photos.
2.3 There four overarching feedback themes that ran through each priority area, these are listed below
2.4 Some members of the board stated that the use of a lot of people/some people and a few people may
diminish some of the statements that autistic people had told us. Especially since the sample size consulted for the refresh of the strategy is considerably lower than that of the estimated population in Norfolk.
There was also discussion about the purpose of the strategy and how we need to ensure that it is evidence
based. But it also needs to assist with initiating change and improvement. It is a document that can be used to highlight the issues autistic people have told us about and stimulate debate about possible
improvement within strategic forums.
Question: Is there any opposition to that view and is there a view on the wording that should be used
instead?
Answer: We have not included the number of people as in some cases it was one person who said something and believe that this would diminish some of the statements, due to the low amount of people
consulted in comparison with the population.
There were several suggestions entered into the chat box:
some/most of
People told us / Majority of people.
Many people / people said
Agreement: To remove the words ‘lot, some, few’ from the strategy and use the words many people / people said
2.5 Discussion around using the data from The National Autism Strategy to illustrate the amount of autistic
people in the UK. It was suggested that using more up to date data / predications would be helpful in
demonstrating need.
Agreement: To use the University College London statistics on autistic population in the UK
Suggestion to also include the birthrate in Norfolk and the estimated increase in autistic people to the Norfolk population to allow for forward planning. SD added a link to birthrates within the chat.
2.6 Discussion around whether there was a need to reflect the challenges of recording and reporting of data within the refreshed strategy.
Suggestion: Link this to the responsibilities of data collection as mentioned in the Autism Act 2009
Agreement: add paragraph around the challenges of recording of data and link to the Autism Act
2.7 There was a suggestion to add the logos of partner organisations to the refreshed strategy.
Agreement: To add organisation logos to the refreshed strategy.
Agenda Item 3: Priority 1 – Improve understanding and inclusion of autism
3.1 Discussion point: Include the lack of autism awareness among primary care. There was discussion around mandating training for Primary care health workers. When the Oliver McGowan training rolls out, primary care workers will be included and this will be delivered as mandatory training. But consideration needs to be given to how the NAPB can help to push this out further. The wording for this addition needs to be considered to ensure it encompasses the wider sense of Primary care as possible and includes not just GP’s but all roles within the Primary Care networks and includes those who work within and from GP surgeries.
Question: Has there been any feedback regarding the training provided for employers?
Answer: No feedback regarding this, but it is included in the Strategy within Priority 3
3.2 Discussion point: Include the fact that autism is included within the Equality Act. Consider adding in link to suspected disabilities/difficulties and the legal responsibility to provide anticipatory reasonable adjustments.
Agreement to link to the Equality Act making refence to suspected difficulties and the legal responsibility to make reasonable adjustments (need to confirm wording used in the Equality act)
3.3 Discussion point: Include the need to actively address stigma and prejudice towards autistic people.
Agreement: to add in a statement to address stigma and prejudice towards autistic people this needs to link to the Equality Act
Agenda Item 4: Priority 2 – Improve access to education and support
transitions into adulthood
4.1 Discussion point: Include the challenge of inappropriate education provision and long waiting
lists for specialist schools, that leads to home education not by choice.
Question: Has there been any consideration or inclusion of training and development of teaching
staff?
Answer: This has been covered in Priority 2 under the ‘What is important to you’ section There needs to be consideration for hybrid models of learning and teaching for young people.
Consider added a statement regarding people home education not through choice but because there are
placements breakdowns or inappropriate provisions. Any statements that are added need to be down in a
sensitive way as to not cross any other work being done especially with the Norfolk area SEND and alternative provisions strategy.
Agenda Item 5 : Priority 3 – Support Adults into employment
5.1 No feedback that needed discussion was received for this priority
Agenda Item 6 : Priority 4 -Tackle health inequalities for autistic people
6.1 Comments that the strategy needs to be more robust and transparent in the reporting of Mental health
Provisions, Diagnostic wait times and risk of suicide for autistic people.
6.2 Mental Health
Nationally, it is recognised that there is a lack of Mental Health community health service and mental health professionals. Within Norfolk it is reported that Mental Health services do not meet the needs of autistic people, and many people are being refused a services or mis-diagnosed/diagnostic overshadowing.
Agreed: To add in national data around lack of the right type of community services and not enough mental health professionals who understand autism.
6.3 Suicide
Agreement to add in the national position around suicide and more information locally.
6.4 Diagnostic Wait Times
Acknowledgement that the one of funding for alternative services has help although it was only temporary.
There is an increase in the amount of people coming forward for assessment. There was a question about whether we should include the current waiting times in the strategy. Discussion points from this comment are:
- These waiting times can fluctuate so can be unhelpful in showing the current state of wait times in Norfolk.
- Putting the worst-case scenario could be helpful in pushing the strategy and securing more provision/resources.
- What is a realistic ask of the system? It may be difficult for the strategy to pass through partners governance if the strategy contains the worst-case scenario without the balance of what is being done.
- Does putting these figures in create an advert challenge to the system?
- Is there an alternative way of demonstrating i.e. comparing the Norfolk wait times to the national target set out by NHS?
Other suggestions to add into this section included:
- The need for pre and post diagnostic support
- Include the lack of available clinical therapeutic interventions.
- Include information on Right to Choose.
Agreement to:
- add in statement regarding pre and post diagnostic support and ongoing MH support.
- Include statement on the lack of available clinical therapeutic interventions throughout someone’s life.
- include statement on right to choose/patients choice making it clear this refers to diagnostic assessments
Agenda Item 7 : Priority 5 – Build the right support in the community
7.1 Agreements to add in statement on the need to separate Integrated care board governance for
Learning disability and autism services
Agenda Item 8 : Priority 6 – Improve support within the criminal and youth justice system
8.1 No feedback that needed discussion was received for this priority
Agenda Item 9 : Putting the strategy into action
9.1 The plan sets out the key actions that we will take towards achieving the priorities of the strategy.
A new plan will be agreed each year.
The NAPB will monitor the plan and whether partner organisations are doing what they have said they will do.
9.2 There is a need to review the membership to ensure that we have all relevant parties involved, i.e. Childrens Services / Mental health Services need representation
9.3 Question: Will this group help partners to develop best practices and explore current good practices
examples?
Answer: This can be explored in the co-production of the delivery plan
9.4 Question: How is the partnership going to work on the priorities? Will it deliver itself or will it rely on other organisations to deliver on the strategy?
Answer: The NAPB is not responsible for delivery of the plan. The NAPB’s role is to have an overarching plan in place and monitor the progress of partner organisations to work towards delivering the priorities
within the strategy.
The NAPB will also need to take into consideration other areas of work and strategies that are in place or
being written.
The NAPB is a voluntary membership and we can only influence but cannot force changes in services.
Agenda Item 10 : Recommendations and Next Steps
10.1 There were 2 options recommendations provided to the
NAPB on how to begin working on co-producing a delivery
plan:
Option 1
- Six working groups, one for each priority to develop an overarching year one plan.
- Each working group monitor the themes to be delivered under their priority.
- Each working group will escalate and report back to the NAPB
Option 2
- One planning and monitoring group.
- The group will develop the plan with partners.
- The group will assign task and finish groups as needed and monitor the delivery of the priorities.
- The group will escalate and report back to the NAPB.
(This could evolve from The Autism Strategy Reference group, but inviting new members that includes partners.)
10.2 Option 2 was the preference of the Autism Strategy Reference Group. Having six groups felt unsustainable and could risk inability to deliver or monitor the plan.
10.3 We would have difficulty to stretch to six working groups at the moment due to membership numbers
and unable for partners to commit.
There was a comment that if we would take the six- group approach we may need additional groups to help prioritise certain action points, i.e. mental health
10.4 The revised draft of the strategy will be sent out with the agreed changes made.
If no response is received from members, then the pan will be taken as agreed in principal.
10.5 The draft strategy is due to be seen by the ICP Mental Health and Wellbeing board of sign off on the 12th June.
Date, time and location of next meeting
Tuesday 28th May 2024 11:00-13:00 (Microsoft Teams)