Autism Spectrum Disorder (ASD): Improving Community Services Recommendations Report from the ASD Special Interest Group

Abstract

Executive Summary and Key Recommendations

In 2011, the National Institute for Health and Care Excellence (NICE) published guidelines for the recognition, referral and diagnosis of children and young people on the autistic spectrum1. NICE recommended that each local area establish co-ordinated multidisciplinary and multi-agency referral, assessment and diagnostic pathways (hereafter referred to as the “pathway”) for children with a suspected ASD.

In February 2014, the Cheshire and Merseyside Strategic Clinical Network (CMSCN) established an Autistic Spectrum Disorder (ASD) Special Interest Group (SIG) to review community services for children with ASD and their families in the Cheshire and Merseyside region. The aim of the SIG was to:

1. Identify and map current multi-agency pathways from diagnosis to transition for Children and Young People (CYP) with Autistic Spectrum Disorder (ASD)

2. Review existing Parent Support Programmes for CYP aged 11-15 years with ASD

3. Develop a process to allow measurement of CYP and family experience

The SIGs programme of work was originally intended to run until March 2016. However, ongoing changes to national service improvement policy and the adaptation of Strategic Clinical Network (SCN) priorities meant the SIGs work programme was condensed to one year with an aim to complete by March 2015. As a result, work on aims 2 and 3 were “paused” with acknowledgement and scope for wider stakeholders to explore these issues further.

Key Findings

 There was considerable variation in the availability and quality of referral pathways within the Cheshire and Merseyside region and it was difficult to establish to what extent some referral pathways were meeting NICE guideline recommendations.

 Parents reported poor access to services and frustration and confusion with the referral pathway.

 With a few exceptions, the voluntary sector was largely disengaged from the process. Those that gave a reason for not engaging with the process cited a feeling of repeated broken policy promises and raised expectations that were not subsequently met.

 There was variable but significant pressure on resources and some areas were unable to meet parent expectations or to meet the NICE recommendation.

 There was considerable expertise in ASD and a passion across all voluntary, health, education and social care agencies to improve services for children with ASD and their families.

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Key Outcomes  A standard blueprint referral pathway template that maps onto NICE guidelines recommendation.

 A parent and carer information leaflet which can be used at point of referral.

 An initial assessment of parent’s priorities during the referral pathway with the aim of informing the development of a tool for measuring parents’ experience.

Key Recommendations

 Clinical Commissioning Groups (CCGs) to refer to NICE guidance and ensure that there is a suitable ASD pathway in place for referral, assessment and diagnosis of children with a suspected ASD in their area.

 CCGs to consider workforce and training needs review, to ensure there is sufficient experience and expertise to meet NICE guidelines.

 CCGs that are due to review or renew their ASD pathway or are developing new process, give consideration to using the blueprint pathway template.

 CCGs to tailor the blueprint pathway template to local needs following a detailed analysis of current local services and gaps.

 CCGs to give consideration to the results of the parent survey when developing their pathway and when developing tools to measures parent experience.

 CCGs to consider developing and expanding on patient and public involvement (PPI) within their catchment area where possible, taking into account families under pressure may need additional support to engage in PPI processes.

 CCGs to consider using the parent information leaflet to provide preliminary information and signposting to support for parents at the point of referral.