Reducing autism diagnosis times for children

Rebecca Kenney, Assistant Psychologist, and Dr Martha Laxton-Kane, Clinical Psychologist, discuss how the restructure of their autism assessment pathway for children and young people at Chesterfield Royal Hospital resulted in reduced waiting times and shorter assessment periods.

Authors: Rebecca Kenney, Dr Martha Laxton-Kane
Reducing child autism assessment waiting times
The nationwide rise in demand for autism assessments (Williams, Mold, Kilbey & Naganna, 2018), has been reflected at Chesterfield Royal Hospital in North Derbyshire. Data from October 2015 showed that there were an average of 21 referrals per month, and waiting times of up to 14 months for an initial appointment.
At that point there was increasing demand, and although the staff involved in diagnosis were very experienced and the assessments themselves were of good quality, there was dissatisfaction from staff and parents/young people about:
  • length of time for initial appointment
  • length of time for the full assessment process
A decision was made to review the assessment pathway. In early 2015, a steering group of key professionals did a review and consulted with wider staff and parents of children already diagnosed at CRH.
Previous assessment pathway
In the old pathway process, direct referrals for autism assessments went straight to the Child Development Clinic (CDC).
  • Waiting times of up to 14 months for an initial appointment. 
  • A paediatrician would do the initial assessment, with 85% of cases then referred to speech and language therapy (SLT) and 80% to clinical psychology.
  • The average wait for SLT was six months and then a further six to eight month wait for clinical psychology.
  • The paediatrician would usually see the family again for a review due to the lengthy waiting times.
  • Each assessment would conclude with a multi-disciplinary team meeting with the child and family.
  • Length of assessment not recorded but estimated to be 1 to 2 years from point of referral.
This process meant that all three professions saw most children and there was repetition in the assessment process between teams, often due to a need to update information following a period of waiting. 
Reviewing the assessment pathway
The general aims of the new pathway were for it to be more integrated, timely, and efficient whilst maintaining quality. Specific aims included:
  • reduce waiting times
  • reduce duplication of information gathering
  • more emphasis on post-diagnostic intervention and signposting
  • more consistent assessment process. 
Taking the aims and targets into consideration, the steering group developed a new pathway process in line with NICE guidelines (NICE, 2011).
The new pathway
In March 2016, a pilot for the new pathway ran and clinicians were able to provide feedback. In September 2016, the new pathway officially launched.
A paediatrician within CDC initially sees all children. Children under 7 years are normally then referred to paediatrics, as they are more likely to have co-occurring health concerns. Children aged 7 and over are referred to psychology. Having a single point of entry helps direct the referral to the appropriate clinician, reducing the number of professions involved and increasing efficiency and effective use of skills. 
The teams now use one pathway assessment booklet meaning information is consistent for all children on the pathway. This helps reduce duplication of information gathering for professionals and families. The booklets now include more input from children’s schools and GPs. 
To enable a multi-professional approach to decision making, the pathway now includes regular panel discussions that review multiple cases at a time.
There is now a clear discharge point from the pathway, preventing cases from being held open for long periods without active involvement. There is now also a consistent approach to monitoring and recording waiting times.
The transformation has had many positive impacts on the service in the face of increased requests for assessments:
  • Waiting times for an initial appointment are approximately 5.5 months.
  • Length of assessment process reduced to approximately 7.5 months.
  • Increased number of referrals – approximately 50 children per month.
The wait times for an autism referral have reduced since the introduction of the pathway and the overall length of the assessment has greatly reduced. The new process has increased the efficiency of the pathway by only having professionals involved when they need to be involved, rather than every professional seeing every child.
The introduction of a pathway assessment booklet reduces duplication of information and save families repeating their histories. Post-diagnostic support has improved by offering workshops to all parents.
Improvements, such as the reducing the gap in SLT provision, still need to be made. Whilst the development of the new pathway has been successful, work continues to develop and improve the process further. 
Williams, A. N., Mold, B., Kilbey, L., & Naganna, P. (2018). Forty years of referrals and outcomes to a UK Child Development Centre (CDC): Has demand plateaued? Child: care, health and development, 44(3), 364-369.
Date added: 2 December 2019