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 sourcesthat 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 / 0-19 population (2012) / 1%
Hartlepool / 22,700 / 227
Stockton on Tees / 47,300 / 473
Middlesbrough / 36,000 / 360
Redcar and Cleveland / 30,900 / 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 andthe 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:

  • 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:

  • 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. NHSHartlepool 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 co-ordination. 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:

•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% prevalencewould 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 3months 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 AgeMAAT 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 MAAThas 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 notreflected in either formal or informal complaints as yet withinTEWV unless otheragencies 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 theTargetedService where there a specific issues identified.Post diagnostic support has historicallybeen 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 arebeing recruited to.

Additional information:

ASD Pathway

Locality reports