This project aims to find out if Care, Education and Treatment Reviews (C(E)TRs) are helpful for adults and children who are autistic or have learning disabilities. It will explore whether they result in positive changes, and if there are some ways they are carried out that work better than others.

• To understand the experiences of adults and children who are autistic or have learning disabilities who take part in CETRs; as well as families and carers, health education and social care professionals, and C(E)TR panel members.
• To understand how C(E)TRs are being carried out in practice with a range of autistic people and people with learning disabilities across different settings.
• To understand how C(E)TRs may change care pathways, potentially preventing admission or promoting discharge.
• To develop and publish good practice guidance for conducting C(E)TRs, including how to promote inclusion and participation for autistic people and people with learning disabilities.

Autistic people and people with learning disabilities have an increased risk of developing mental illness, which may lead to psychiatric hospital admission. There are concerns about:

• the appropriateness of these admissions;
• excessive lengths of stay;
• poor care and abuse.

C(E)TRs were introduced due to these concerns and were seen as a tool to reduce inpatient numbers and improve care by introducing a person-centred and individualised approach. However, there is very little evidence

that C(E)TRs have led to a reduction in the number of autistic people and people with learning disabilities within psychiatric hospitals.

This project sets out to explore how C(E)TRs are experienced, carried out, and impact how care is received.

It addresses an important gap in research and works towards improving healthcare experiences for autistic people and people with learning disabilities. The project strongly links with our Moonshot Vision towards a society that works for autistic people, specifically its ambition to create inclusive health services that have autistic people’s needs recognised and supported appropriately.

Throughout the project, the researchers are working closely with autistic people, people with learning disabilities and parents/carers. We, the National Autistic Society, Learning Disability England, and Challenging Behaviour Foundation have set up Lived Experience Advisory Panels (LEAPs), which are collaborating with the research team to make sure the research reflects lived experiences and priorities.

There are four stages to this project:

1. What is happening in England?

In this stage, the researchers are asking people to complete surveys to let them know their experiences of C(E)TRs. They want to hear from anyone involve in a C(E)TR over the last 12 months, including:

• Autistic people and people with learning disabilities, including children aged 5 and older
• Families and carers
• CETR panel members
• Health, education, and social care professionals

The researchers have worked with LEAP members to co-produce survey questions for autistic people, people with learning disabilities, families and carers, C(E)TR panel members, and health and social care professionals. This includes multiple versions and adjustments to ensure the surveys are inclusive, and accessible to all.

2. Interview people and develop an understanding of the C(E)TR process

In this stage, researchers will attend 20 C(E)TRs (10 children and 10 adults) and other patient meetings to find out how patients in hospital are doing over time. The information from these interviews will be used to work out whether C(E)TRs are helping people and making things better.

3. Examine things that affect hospital discharge

Next, the researchers will look at the anonymous data collected by the NHS about autistic people and people with learning disabilities who are admitted to hospital. They will examine what did or did not help get patients out of hospital.

4. Develop good practice guidance for conducting C(E)TRs

Finally, all the information collected from the previous stages will be combined with the LEAP’s input to co-produce and share information about the project’s findings. The researchers together with the LEAPs will co-develop and publish good guidance for conducting C(E)TRs.

• Peter Langdon (Co-Principal Investigator) is a Professor at the University of Birmingham. He has experience working within inpatient hospitals for adults with learning disabilities and autistic adults.
• Karen Bunning (Co-Principal Investigator) is a Professor at the University of East Anglia. Her research focuses on developmental disabilities and complex communication needs.
• Magali-Fleur Barnoux (Investigator) is a Senior Lecturer at the University of Kent. Her research focuses on people with intellectual and developmental disabilities who have come into contact with the Criminal Justice system.
• Paul Thompson (Investigator) is an Associate Professor at the University of Birmingham. His research interests include reducing the inequalities experienced by autistic people.
• The research team is supported by Louise Denne (Study Manager), Jen Dawe (Senior Research Associate), Nik Manktelow (Research Associate), and Alana Muis (Research Assistant).

The wider project teams include collaborators from the University of Kent, University of Birmingham, University of East Anglia, Coventry and Warwickshire Partnership NHS Trust, Learning Disability England, Challenging Behaviour Foundation, and ourselves.

Our charity is playing an important role in this project by helping to ensure autistic people’s voices and experiences shape the work from start to finish. We brought together a LEAP of six autistic people with a range of lived experience. The group meet with the research team periodically sharing their insights and guiding each stage of the work.

"This project has allowed me to make truly constructive meaningful use of my lived experiences of autism to inform a study of individuals' experiences of C(E)TRs. Within this I have learned so much from and been inspired by peers with autism." - Sarah, LEAP member

We also contribute to regular project team discussions, support participant recruitment, review key documents, and share project updates and findings.

This project was funded by the National Institute for Health and Care Research.

This project is taking place over three years from September 2024 to August 2027.

Project website: CECiLiA

Project launch news story