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Meeting Details
Date: Wednesday Thursday 1 August 2019
Time: 17:00 – 20:00
Venue: The Priory Centre, Priory Plain, Great Yarmouth, NR30 1NW
Agenda Item 1 : Welcome and Introduction
1.1 Lee Gibbons welcomed everyone to the meeting and made introductions. Lee Gibbons advised attendees of the location of the quiet room and other facilities within the building. Tea, coffee and
biscuits were made available. The room temperature was checked, and a fan obtained from reception.
1.2 Communication cards were made available and their use explained. Lee Gibbons checked if any other reasonable adjustments were required; none raised.
Agenda Item 2 : NAPG Questions and Answers
2.1 The NAPG Questions and Answers were provided to those in attendance.
Action: Autism Administrator will distribute all new NAPG questions and answers 10 days in advance of the NAPG meeting to all NAPG members.
2.2 Question 8: Clare Smith advised that Question 8 had not been answered. Tracey Walton advised that the Co-Chairs are named and while we can name statutory members we may need to seek the permission of autism representative to publish their names.
Action: The NAPB will seek permission of autistic members and where permission is granted names will be added to the NAPB website.
2.3 Question 7: Clare Smith advised that a report from the NAPB to the NAPG had not historically happened. She asked if, as stated in the terms of reference, a report from the NAPG will be going to the NAPB? Tracey Walton reminded Clare Smith of the NAPB report provided at the 14th May NAPG and confirmed that historically NAPB reports had been provided at all NAPG meetings. She further advised that an update from the NAPG is provided at each NAPB meeting. Clare Smith stated that she did not recall this, or it was not communicated in a way she acknowledged it. Lisa Lonergan advised that the briefing had been provided for those meetings she attended.
Action: Brief notes and actions from the NAPG will be provided from this point onward
2.4 Question 6: Clare Smith asked if Cllr Bill Borrett had apologised to NAS West Branch? Tracey Walton advised that the local autism strategy was sent to NAS West Branch on two separate occasions. She had also discussed the strategy in face to face meetings and in email exchanges with NAS West Branch representatives, allowing comments and changes to be made to the strategy on day services, education and blue badges.
Action: Organisations to distribute to their members in ways and times that suit them NAPB communications.
2.5 Question 1: Clare Smith asked why it has taken over 6 weeks to obtain an answer to this question. Lee Gibbons advised that the question had been circulated to obtain an answer. Once it has had been received, it will be sense checked by the Education Working Group and added to the questions and answers document.
Action: Autism Administrator to chase an answer and add to the NAPB FAQ.
Agenda Item 3 : NAPB Update
3.1 Lee Gibbons read out the NAPB update and advised all information is available on the NAPB website.
Clare Smith queried why the Autism Strategy is going to Cabinet but not health. Tracey Walton advised that the local autism strategy is going to Joint Strategic Commissioning Committee (JSCC) in August. Links to the agenda, minutes and reports for the Health and Wellbeing Board can be found at: https://www.norfolk.gov.uk/what-we-do-and-how-we-work/policy-performance-and-partnerships/partnerships/health-partnerships/health-and-wellbeing-board/search-reports
Links to the agenda, minutes and reports for Cabinet can be found at:https://www.norfolk.gov.uk/what-we-do-and-how-we-work/councillors-meetings-decisions-and-elections/committees-agendas-and-recent-
decisions/cabinet
3.2 Engagement Working Group
Lee Gibbons advised that attempts to convert the adult questionnaire into easy read had not been successful, making it too long and impossible for anyone to complete. For this reason, an easy read
introduction will be produced that will include details about the questionnaire, what it aims to achieve and where people can go to get support.
The Working Group is currently updating the NAPB website to ensure it is autism friendly. It is also working on the next NAPB newsletter.
3.3 Workforce Development
Clare Smith queried whether the CCG are funding the autism training.
Action: Raise at Workforce Development Working Group and add to the NAPG questions and answers.
3.4 Diagnosis Working Group
Lee Gibbons provided an update on the Diagnosis Working Group. Catherine Haig added to this, advising that Asperger’s East Anglia had decided not to continue with their contract. Advising that pre- and post-
support was a bigger demand on resources than expected, the waiting list going up and funding not matching demand.
3.5 Clare Smith advised the NAPG that Norman Lamb MP had hosted a meeting with NAAN, NCH&C and NCC, where it was advised that funding is being moved to NCH&C. There will be no additional increase
in funding. NCH&C are appointing an additional clinical psychologist, speech and language therapist and 1.2 support workers.
3.6 Chloe Cullen advised the NAPG that everyone she knows had to go private and pay for an autism assessment as a result of not getting through the screening tool. This is particularly a problem for females, who do not meet the assessment criteria, due to masking that leads to females getting misdiagnosed. A member of the public advised, with full acknowledgement from all NAPG members, that recently diagnosed autistic people need to better understand their condition (for example levels 1 through 3), what their needs are and what type of support could help them.
Action: Catherine Haig welcomed the feedback and will consider this in the future when writing diagnosis letters.
3.7 Discussion regarding GPs being a gate keeper but having a lack of awareness or knowledge of autism (despite some believing they are the experts), creates a barrier to diagnosis. Tracey Walton advised people
can self-refer to the Autism Service Norfolk for adult diagnosis.
Action: Members to share the link to self-refer to Autism Service Norfolk http://www.norfolkcommunityhealthandcare.nhs.uk/The-care-we-offer/Service-search/autism-service-norfolk.htm.
3.8 Chloe Cullen advised that the diagnosis service needs to check how people are getting on while they are on the waiting list for an autism diagnosis assessment. This is because an individual’s needs can
change over time and as a result may now need a priority assessment.
Action: Catherine Haig to consider as part of continued service improvement.
3.9 The NAPG members discussed people needing tailored individual and group pre- and post-diagnosis support in age ranges from young adults (18 – 24), adults (25 – 40), older adults (41 – 64), older people (65 plus). Named peer support workers are required who have autism knowledge, a wide range of general knowledge and know who to contact for housing, social care and health – an “all-round go getter”.
Action: Tracey Walton to feed into Diagnosis working group and ASN Contract Monitoring discussions.
3.10 Data Working Group
Lee Gibbons updated on progress of the Data Working Group advising that an autism dashboard is being created. Tracey Walton confirmed data will include information from wider partners and not just NCC.
3.11 Education Working Group
Bruce Hubbard provided an update on the Education Working Group. He advised that while progress has been slow a detailed plan is now in place. Clare Smith requested the details of the plan, to which Bruce
Hubbard advised there is too much information to go into the detail in this group. He assured the NAPG that work is progressing with many different coproduction opportunities ahead.
Agenda Item 4 : NAPB Group Themes
4.1 This part of the meeting was to give an opportunity for autistic people to raise concerns that they had and potential barriers to services, with the aim of taking them back to the NAPB for further discussion. It was also an opportunity to outline things which were going well, so that they are taken into consideration in future plans.
4.2 Gaps in Service
It was reported that there is currently no support for autistic people in need of work-based skills training, housing knowledge, tax information and benefit advice. Chloe Cullen recommended the Living Well with Autism course and directed NAPG members to an article on her twitter feed “sillybillychloe”, https://twitter.com/sillybillychloe/status/1155188657227276290/photo/1
4.3 DWP Assessment
Issues regarding dealing with the DWP and assessments were raised, particularly a lack of quiet rooms, problems with strip lighting and a general lack of awareness of the needs of autistic people. It is reported
that no reasonable adjustments are being put in place. Autistic people are being told they are not being assessed and that the person interviewing them is “just asking some questions”, but when the paperwork comes through it says, “in your assessment”.
4.4 Prison
Discussion regarding the lack of autism diagnosis and support for people with autism and or autistic traits within prisons. Discussion regarding the case of an autistic person discharged from a Norwich Prison being
handled incorrectly, where the autistic person was delivered outside of the prison with no preparation or support put in place. By the time they got home to Suffolk they were anxious with everything re-surfacing. On presentation to Suffolk council for housing they were directed to a roundabout where other homeless people were living rough
4.5 Social Care Team
It was reported that autistic people are getting bounced between mental health and learning difficulties teams, frequently either classed as not meeting criteria or classed as too high functioning and therefore
ineligible to access services. Tracey Walton advised that if a service user has autism and mental health issues, the Mental Health team will support them; if they have autism with a learning difficulty the Learning
Disabilities team will support them. Chloe Cullen talked about psychologists who are finding it difficult to identify the correct team for their service user.
Action: Chloe Cullen to seek permission of the affected individual and forward their details to Tracey Walton at autism@norfolk.gov.uk.
4.6 Living Skills
It was reported that autistic people need support to learn living skills such as cooking, cleaning, management of finances/bills, and identifying ways to protect themselves from being taken advantage of.
4.7 Autism safeguarding
There was discussion around autistic females being sexually and/or financially abused. It was reported that it is “a dangerous world for them”.
4.8 Pre- and Post-Support
Action: Recorded separately and will be reported into the Diagnosis Working Group.
4.9 Training
It was reported that more people/professionals need more training in autism, especially around females who are able to mask. Consideration should be given to employing people to deliver services who have
autism and lived experience. Autistic people tend to trust and have a sense of relief when being supported by a person with autism or lived experience.
4.10 Carers Respite/Support
It was reported that families are struggling to support their children, with young autistic adults particularly feeling like a burden to their parents and families. Support is needed for the families of autistic people. Support is needed for those who choose to live away from home as well as for those who stay, due to the high level of support needed to live independently.
4.11 Accessibility
It was reported that support to access services is needed for autistic people and should not be determined by a period of time provided.
4.12 Bereavement Services
Discussion regarding a lack of bereavement services and reasonable adjustments to enable autistic people to properly engage. Limited 6 sessions of counselling is not enough for autistic people who find it difficult to express their emotions. An autistic NAPG member advised that they were discharged as they were told their needs could not be met as they were unable to delve deep enough into their emotion and that they were banned from saying the word autism.
4.13 NSFT Wellbeing Service
NAPG member advised that the NSFT are trying to resolve issues regarding autism but are also limited to 6 sessions with a councillor.
Agenda Item 5 : Wellbeing Check
5.1 Generally reported that the first half of the meeting, involving the Questions and Answers and the NAPB update, created a tense uncomfortable atmosphere. The second half, the pre- and post-support
workshop, was very productive and informative with a friendlier environment. Clare Smith advised that Lee Gibbons style less formal that supported a friendly and welcoming environment.
Next Meeting Date and Location
Thursday 31 October 2019, 10:30 – 13:30, County Hall, Norfolk County Council, Martineau Lane, Norwich, Norfolk, NR1 2DH