CYHWBCG -Teeswide Children’s Autism Update
Purpose
The purpose of this report is for information to update on current delivery of the Children’s
Autism Pathway in accordance with NICE guidance. The group are asked to consider the
information and discuss its content, particularly noting the issues highlighted for Stockton-on
Tees.
Background/Introduction
The European Commission highlights the problems associated with establishing prevalence
rates for Autistic Spectrum Disorders and actual numbers. These include the absence of
long-term studies of psychiatric case registers and inconsistencies of definition over time and
between locations.
In order to plan services for children with autism effectively and improve their well-being,
firstly there is local recognition that there needs to be an accurate knowledge of the number
of children with autism in the area. Locally there hasn’t been a consistent record of diagnosis
to be able to confidently state the number of children who currently have a diagnosis of ASD
and additional inconsistencies within the pathway mean the numbers known cannot reliably
give a local prevalence rate. However the co-ordination of the multi-agency pathway across
all ages is now led by TEWV and a database for referral and diagnosis will provide a sound
basis for data collection to be used by commissioners going forward. However there are
some existing sources that provide some data for example the disabled children’s register
and SEN statements.
Autism was once thought to be an uncommon developmental disorder, but recent studies
have reported increased prevalence and the condition is now thought to occur in at least 1%
of children. Within the evidence supporting the NICE Guidance it was found that in some
studies 3% of school age children required assessment for autism to diagnose 1.5% of the
school age children with autism.
If the above percentage related to 1% of the 0-19 (2012) population across the Tees LA
were applied it would predict the following prevalence:
Local authority
Hartlepool
Stockton on Tees
Middlesbrough
Redcar and
Cleveland
0-19 population
(2012)
22,700
47,300
36,000
30,900
1%
227
473
360
309
Implementing NICE Guidance, multi-agency working and joint commissioning
NICE Guidance 128 recommends that a local Autism strategy group is formed to oversee
the implementation and ongoing development of the Autism pathway stating that
‘Coordination between health agencies and other key services such as education, social
care and the voluntary sector is important. Multi-agency staff should also work in partnership
with the child or young person with autism and their family or carers’
The guidance also recommends:
In each area a multidisciplinary group (the autism team) should be set up. The core
membership should include a:
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paediatrician and/or child and adolescent psychiatrist
speech and language therapist
clinical and/or educational psychologist.
The autism team should either include or have regular access to the following professionals
if they are not already in the team:
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paediatrician or paediatric neurologist
child and adolescent psychiatrist
educational psychologist
clinical psychologist
occupational therapist.
Locally it was recognised that the co-ordination of the Autism pathway was poor and during
2012/13 additional funding was provided non-recurrently by NHS Tees to a number of
agencies to increase capacity to reduce waiting times and improve pathways to meet NICE
guidance. Waiting times prior to the initiative were in excess of 24 months. NHS Hartlepool
and Stockton on Tees CCG have since agreed to recurrently fund North Tees and Hartlepool
NHS FT for the Paediatric, Speech and Language Therapy and OT assessments as part of
the diagnostic pathway. Tees Esk and Wear Valleys NHS Mental Health Trust (TEWV) are
commissioned as part of the Tees Community CAMHS Specification to provide assessments
and input from the Clinical Psychologist, Skilled Therapist, Administration and ASD coordination. There is current work ongoing in the South Tees CCG area to determine a similar
position.
The Educational Psychologist (EP) contribution to the assessment process has been funded
by the LAs in the past and in part during 12/13 by NHS Tees as part of the non-recurring
initiative. Both Hartlepool and Stockton LA’s are not committing to fund direct contribution to
the Autism Team beyond March 2014 as they are focusing on delivering statutory services
and developing a business model approach to working with individual schools. This has
meant withdrawing from attending assessment planning and diagnosis meetings. However
each authority continues to submit information where a child is known to the education
psychology service. Middlesbrough and Redcar and Cleveland LA are continuing to
contribute education psychology time to the ‘Autism Team’ though this remains under
continuous review.
There is now a Teesswide approach to the implementation NICE Guidance 128 via the Tees
Children’s Autism Strategy group which was launched in November 2013. The group priority
is to ensure compliance with NICE guidance and begin to collate local data to inform the
development of a Tees Children’s Autism Strategy. The strategy will be complete to launch
in line with the 1st September implementation of the SEN reforms and will contain locality
actions plans to reflect the different approaches within each LA area.
Implementation of NICE Guidance 170 on the ‘management’ of autism post diagnosis
published August 2013 is being led by the Tees Strategy group and is recognised within both
Hartlepool and Stockton on Tees and South Tees CCG commissioning intentions for 14/15.
To complete this work the group are completing the NICE baseline assessment tool across
agencies and will ensure gaps are communicated within each of the localities and reflected
in the emerging Tees Children’s Autism strategy.
The group have identified the following local priorities:
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Continuous pathway improvement
CYP & Family enagagement
Workforce development
Post diagnostic multi-agency support
Transition
EP contribution in Stockton
In Stockton historically the EP service has taken a lead on some co-ordination elements of
the Autism pathway - The CYPHWCG are asked to note that in Stockton local meetings
have been held to manage the transition and the following actions agreed:
 EP Service will still be notified when a child enters the pathway and when planning
and formulation meetings will take place so they are able to provide information
should they have it
 EP service will with family consent be informed of assessment outcomes
Stockton locality
The Stockton Birth Rate 2,432, applying 1% prevalence would indicate that 24 Children each
year are likely to be diagnosed. NICE suggest you would need to assess up to double that
number so 48 in a year. The current assessment rate is higher than this, however the
referral rate is greater.
Prior to the pathway initiative waiting times from referral to assessment outcome across all
ages was in excess of 24 months. The NICE Autism quality standards published February
14 set a criterion that states ‘People with possible autism who are referred to an autism team
for a diagnostic assessment have the diagnostic assessment started within 3 months of their
referral’. This standard is met within the pathway however the total assessment time to
diagnosis varies from case to case. There is no stated quality standard related to overall
assessment to diagnosis time.
The School Age MAAT has a current waiting list of 86 with an approximate 13 Months
Assessment Wait to point of diagnosis with an average of 7 assessments per month. The
pre-school MAAT has a list of 90 with an approximate 23 Months Assessment Wait to point
of diagnosis and an average of 6 assessments per month however this is due to drop to 3
per month between June and Dec whilst there are paediatric vacancies. NTHFT have 2
Community Paediatrician vacancies and are currently seeking backfill whilst permanent
positions are secured. NTHFT reported that they are unlikey to be back to full capacity until
Dec 14. Once at full capacity this will take the pre-school assessments to an average of 12
per month to align with the trend of an increase in preschool and reduction in school age
referrals.
Professionals report that parents and other professionals are unhappy with waiting times but
this is not reflected in either formal or informal complaints as yet within TEWV unless
other agencies in the younger age group are aware of complaints through their agencies.
The Autism pathway is multi-agency and each individual agency has their own complaints
procedure in order for issues to be raised the strategy group will be looking to ensure a
clear and transparent complaints procedure is developed across the pathway.
Attached below are Tees locality reports received by the strategy group in March.
Children diagnosed have access to Tier 3 CAMHS, LDCAMHS and the Targeted Service
where there a specific issues identified. Post diagnostic support has historically been
provided by the EP service (Autism Outreach) in Stockton and is most likely an area for
development. The CYPHWCG are asked to consider working closely with education settings
to encourage take up of the Autism Outreach Service.
Current Gaps
Strategic direction – the Tees Group are leading on developing a strategy informed by the
NICE baseline assessment tools and children, family and stakeholder engagement.
Current issues exist around recruitment that will impact on assessment and diagnosis NTHFT Paediatrics, TEWV Psychology and Psychiatry input while posts are being recruited
to.
Additional information:
ASD Pathway
Person Centred
Pathways of Care Document ASD new version.pdf
Locality reports
ASD Strategy Group
Locality Reports March 2014.pdf