ASD Information Sub Group Minutes, Thursday 28 October 2004
Present:
Fiona Brown, Jane Cantrell, Anna Cossar, Moira Dickinson, Alison Leask, Jean
MacLellan (chair), Robert McKay, Miklas Scholz, Paul Smith, Dorothy Warren
Apologies:
Jennifer Kirk, Carol – Anne Mainland, Jan Murdoch, Val Murray, Jane Weir,
Margaret Whoriskey
Speaker:
Phil Dimmocks (PARIS Project Manager)
1. Welcome, introduction and apologies
Miklas Scholz was welcomed to his first meeting as a ‘young user
representative’. The Edinburgh and Lothians Aspergers Society nominated him.
Miklas informed the group that he is a lecturer in civil and environmental
engineering at the University of Edinburgh and is married with two children.
He explained that he was diagnosed two and a half years ago with mild
Aspergers (5-10 on the spectrum with 100 being the highest).
Jane Weir (Head of Publishing, NHS Health) has been in touch to say she was
unable to attend this meeting. Jean has been unsuccessful in contacting her by
telephone to discuss this further.
Members were reminded that Alison Leask and Jennifer Kirk give updates to
the group at each meeting. Jane Cantrell provides mentoring support for Alison
and Robert McKay for Jennifer.
Action points:
 Jane Cantrell to contact Jane Weir to see if she is the appropriate person to
have on board.
2. Note of 16 September meeting and matters arising
The minutes of the second meeting were agreed.
Matters arising
Update on Alison’s Project
Alison has completed 15 Diagnostic Centre interviews and has a further 10
interviews confirmed. She estimates by the end of January she will have
completed her interview schedule (35 to 40 interviews) and will be moving
towards the production of a high quality booklet with a CD rom linked to a
website. Alison welcomed any support and information to meeting this goal.
Members considered snapshots of information collated from two almost
completed areas – Argyll and Clyde (including Argyll and Bute) and Greater
Glasgow. 40 to 50 % of patients seen in Argyll and Clyde receive a diagnosis of
ASD compared to 60 to 70% in the Greater Glasgow area. Figures provided for
Greater Glasgow Health Board also contained SCA figures which showed 73%
of patients received a diagnosis of autism. This suggests that clinicians err on
the side of not diagnosing. Figures for private diagnosticians are not included.
Data will be compared against the figures in the Audit of Services for People
with Autistic Spectrum Disorders statistical report. Miklas offered to produce
stats on the data received and advise Alison on publishing results.
Members also considered a list of diagnostic centres and contact details in the
Argyll and Clyde area. The group endorsed the notion of a directory.
Action points:
 Alison to contact Miklas for help with statistical information if required.
 Members to assist Alison on website development by considering where
it should sit, target groups, information suggestions, links etc plus
sustainability.
Update on Jennifer’s Project
Robert reported that Jennifer has met with parent groups from a number of local
authority areas and sent out questionnaires to three parent groups. Education
Department and ENQUIRE have also given permission to include materials.
Jennifer has been in discussion with DEFS to use the material that NAS wrote
with PACE for the early years support pack in England and has been in touch
with the London NAS Office Internal Reference Group who have defined core
information material for the pack.
3. PARIS (Public Autism Resource and Information Service)
Presentation by Phil Dimmocks (PARIS Project Manager) – see Annex 1
Phil introduced PARIS – a comprehensive database of local and national
services for people with autism and their carers available via the web. There are
40 to 50 resource types of information. 30% of 950 questionnaires sent out 3
weeks ago to gather information have been completed and returned. Some
services have also been researched on the Internet. Robert clarified that PARIS
does not have the NAS logo and is everyone’s service. It is a repository for
sustainable and renewable information.
It is hoped that eventually everything to do with autism services will be on
PARIS. Phil gave a demonstration on using the database to find schools,
diagnostic services and services offering interventions. He also demonstrated
how to do more specific searches. The group welcomed the concept of PARIS
as a first port of call to direct carers and service users to autism services.
Phil confirmed that registration will be free and the NAS will pay for upkeep of
the system. Data collected will enable an analysis of services across the country
to be carried out and will assist future planning for services. Phil agreed that
contact details of clinician services rather than individual clinicians should be
provided in case of staff changes.
Phil also spoke of plans to build a separate system to PARIS which will be
called SIGNPOST which will provide person focussed information to
complement the information provided by the NAS website and Paris.
4. Draft work plan
Members were reminded that the aim of the group is to have an overarching
information strategy. Jane reminded members that the third part of the ‘Walk
the Talk’ was also for an overarching information strategy. One of the people
involved with this strategy could advise our subgroup.
At our next meeting on 8 December, Peter Galbraith will give a post
consultation update to the group. Alison will provide resource materials
matched to appropriate members to assess their usefulness for inclusion on the
website.
The presentation on 1 February on proposed legislation will be postponed until
Easter when the detail of the legislative programme will be clear.. It was agreed
that Jennifer and Alison should give presentations at this meeting instead.
Action points:
 Jane Cantrell to provide Dorothy with details of strategic planner who is
to be invited to a future meeting
 Members to email Dorothy with thoughts on work plan
5. Date of next meeting: 8 December 2004 (1.30pm to 3.30pm, St Andrews
House)
Scottish Executive
November 2004
ANNEX 1: Presentation on
PARIS by Phil Dimmocks
www.info.autism.org.uk
Public Autism Resource & Information Service
www.info.autism.org.uk
Agenda
1. Overview
2. Timescales
3. Example screens
4. Content management
5. Analysis
6. PARIS internal Demo
Public Autism Resource & Information Service
www.info.autism.org.uk
Overview - PARIS
Aims:
•
•
•
•
Comprehensive database of local and national services for
people with autism and their carers available via the web
Information accessed via the Internet, mobile devices
Shared content management responsibility
Data in PARIS to assist with campaigning, lobbying, planning
Now:
•
NAS Internal version with 3500 resources - schools, adult
services, diagnosis, support groups, networks, events and
conferences, training courses and more
Next:
•
•
Public web version with funding from Vodafone
Partner organisations able to enter latest details
Public Autism Resource & Information Service
www.info.autism.org.uk
Overview - Signpost
Aims:
• person focussed information complementing the information
•
•
provided by the NAS website and PARIS
Advice centred on Issues and key life stages
Actual information provided will be very relevant to the
recipient by segmenting sections such as entitlement, who
to contact and questions to ask based on their age, sex,
home location and diagnosis
Planned:
•
•
Signpost will be integrated with PARIS and the NAS website
Forward communication with registered users – e.g e-mail
sent on a birthday, or notification that a resource of interest
is now available near their home
Public Autism Resource & Information Service
www.info.autism.org.uk
Online Services
NAS web
PARIS
Signpost
Public Autism Resource & Information Service
www.info.autism.org.uk
Timescales
2004
2006
2005
PARIS Internal NAS version available to all networked users
PARIS web
PARIS on the web
Mobile
Signpost 1
PARIS on mobile phones
Signpost
Release 1
Signpost 2
Signpost release 2
Geographical
Analysis
Public Autism Resource & Information Service
GIS
www.info.autism.org.uk
Public Version Screens
Public Autism Resource & Information Service
www.info.autism.org.uk
Public Version Screens
Public Autism Resource & Information Service
www.info.autism.org.uk
Public Version Screens
Public Autism Resource & Information Service
www.info.autism.org.uk
Public Version Screens
Public Autism Resource & Information Service
www.info.autism.org.uk
Content Management
Regional model:
•
•
•
•
Regional teams update regional services frequently
PARIS Content Officers update and add new services proactively via questionnaires and other research
Functional teams in the NAS author information relevant to
them such as training courses, accreditation
Partners in Autism use online forms for their own services
Quality control:
•
•
•
•
Questionnaires are progressed and entered by the PARIS
content officers
Verifiers per region plus additional national verifiers
PARIS Review Group meet to discuss quality
Content Officers liaise closely via discussion group, email
and meetings
Public Autism Resource & Information Service
www.info.autism.org.uk
Analysis
Supply & Demand:
• PARIS will hold a comprehensive map of services that are
supplied to the community
• UK population details using prevalence metrics will indicate
broad demand. More sophisticated metrics will be investigated
Analysis:
• Geographical Layers of hot/cold areas across various types
of resources and attributes such as facilities offered,
Interventions offered
• Statistics across varying geographical areas
• Annual report focussing on the gaps in autism resources
across the UK making use of PARIS information & other
qualitative and quantitative analysis
Public Autism Resource & Information Service
www.info.autism.org.uk