Detailed Examination: Autism Service Models Local Level (Case Studies)

• Research type

  Research Study

• Full title

  A Realist Evaluation of Autism ServiCe Delivery (RE-ASCeD): Which diagnostic pathways work best, for whom, when, and at what cost? Work Package Four: Detailed Examination of Service Models at Local Level (Case Studies)

• IRAS ID

  285876

• Contact name

  Ian Male

• Contact email

  ian.male@nhs.net

• Sponsor organisation

  Sussex Community NHS FT

• Clinicaltrials.gov Identifier

  NCT04422483, ClinicalTrials.gov

• Duration of Study in the UK

  2 years, 0 months, 29 days

• Research summary

  Summary of Research
  This application forms Work package 4 of an overarching study: "A Realist Evaluation of Autism ServiCe Delivery (RE-ASCeD): Which diagnostic pathways work best, for whom, when, and at what cost?". The overarching study’s aims are to examine existing models of Autism diagnostic service delivery in order to investigate which approaches offer high quality, timely solutions and how much these cost, and the factors that underpin their success. Ultimately, the aim is to inform the commissioning and delivery of high-quality diagnostic services which offer a positive experience for children and families and result in individualized, needs-based and holistic packages of care.

  Autism diagnosis takes place in a variety of settings including Paediatric Services (e.g. Child Development Teams and Services (CDTs), Child Adolescent Mental Health Services (CAMHS) and Tertiary centres. Within each individual service, the care pathways and multidisciplinary team contributions may vary. The aim of WP4 is to undertake an in-depth analysis of varying diagnostic service models to gain an understanding of what context and mechanism configurations are associated with high quality, and timely diagnosis, within the principles of the NICE guidelines, and in a manner that young people and families find acceptable. We will examine service models in detail using interview and focus groups of staff, commissioners, parents and young people, and quantitative analysis of costs of assessment so we can better understand the strengths and weaknesses of each service and what bariers and facilitators to service delivery occur

  The study is funded by NHS England.

  Summary of Results
  The Autism Diagnosis Pathway Study

  What did we do?
  We spoke with people who work in services for children with autism. We spoke to families, children, and professionals. We asked what we should do to improve diagnostic services for children with autism. First, we looked for any evidence from the UK that discussed processes for how to work out if a CYP may have Autism. We discussed findings with our team that included people who support Autistic people. Second, we surveyed professional teams. We asked teams to tell us how many children they were diagnosing? How often were they seeing children? How many clinical issues existed? What did teams do? Third, we chose 6 teams from around the country. We then looked at each team. What did they do? How often? Who did what? How much did it cost?

  Why did we do the study?
  The number of children and young people assessed for autism has been increasing. Autism is a lifelong condition. Clinical teams need to make accurate and quick decisions. Sometimes autism becomes more obvious later or during the teenage years. This leads to later diagnosis. People can receive a diagnosis at any age. Families and children need support and intervention from the point of concern. Support should occur well before diagnosis.

  Parents and carers see concerns when a child is not developing and thriving well. Problems are also seen by a teacher, doctor. Children and young people are usually sent to see a specialised diagnosis team. Diagnosing Autism means getting information about a person’s behaviour and development. This can be by more than one type of professional. As a result, many families spend more than a year waiting for a diagnosis. Waiting times need to be shorter so children and young people get the right support sooner.

  What did we find out?
  We found there are many different ways to diagnose. There are many different professionals who makes the diagnosis. We found that families want to have a say, know what is going on and what is going to happen, and how long things will take. Families liked good support and information. Children needed to get support whatever the outcome. This support should be at any time even if they are not diagnosed. Parents and carers liked to have a report that said what their child was good at, not what they found difficult. They also found it helpful if the report suggested how to help their child. Families and children need individual profiles of their strengths and needs. They need to know what support works.

  Services need time to assess. This helps give a clearer picture of the child, and parents appreciate this. Waiting loses time which could be better used to help children. But, some teams take 2 years to assess a child, which costs more (£1019 per child). Other teams take about a year costing half as much (£527 per child). Services with wide groups of professionals take under a year (£415 per child) to assess. Boys get diagnosed 3 months quicker than girls. The older a child is, the longer it takes to get diagnosed.

  Here's what should be happening:
  Professionals need more training to understand Autism. Getting a diagnosis is an emotional time for families. Sometimes professionals do not recognise this. Parents need more support services. Support must be present for family and child from the start of the process. Support must respond to the child’s needs, not only their diagnosis.

  Improve information gathering about the child. The profile of the child must be more detailed. Services must be clear to parent about what will happen during the process. When children enter the system, the start date must carry over to all services.

  Communication should be with one single named professional. This professional should organise and co-ordinating care. Services need to have wide expertise in child development disorders. This will enable good recognition of conditions and give helpful advice to families. Staff need to be able to recognise a wide range of conditions. Teams should match to the children and young people, the local population, and team needs. Health professionals who helped assess must be part of the final decision.

  Assessments must describe and profile the strengths and needs of the child. Assessments must identify children who can go through the system quicker. Assessing teams must listen to children's views. Assessing teams must translate when there is second language. Adapt assessment must for children and families.

  Share feedback and reports to all key agencies like health and education within 4 weeks. Parents must have a chance to about their child and what helps their child. This must be with someone they know from the assessment team.

  There must be access to training for those who work with children and young people who might have autism. Specialists need time to develop autism diagnostic experience and skills. Senior staff must have time to hand on their skills .

• REC name

  London - Central Research Ethics Committee

• REC reference

  21/LO/0084

• Date of REC Opinion

  3 Feb 2021

• REC opinion

  Favourable Opinion