An important project launched last year exploring experiences of Care Education and Treatment Reviews (C(E)TRs) and how these might be improved. Our Evidence and Research team are supporting the project, Care​ Education and ​Treatment ​Reviews for people with learning disabilities and/or autistic people​ (CECiLiA), which is now in search of participants.  
 

Project background 

C(E)TRs were introduced due to concern about the quality of care and the abuse of people with learning disabilities and autistic people within psychiatric hospitals. 

C(E)TRs 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 people with learning disabilities and autistic people within psychiatric hospitals.  

This project aims to address this evidence gap, specifically: 

• To understand the experiences of all stakeholders who take part in C(E)TRs, including people with learning disabilities and autistic people and their families.
• To understand how C(E)TRs are being carried out in practice with a range of people with learning disabilities and autistic people 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 people with learning disabilities and autistic people.

More about the study 

The project is a collaboration of researchers, universities and organisations, jointly led by Professors Peter Langdon and Karen Bunning at the Universities of Birmingham and East Anglia respectively, and including University of Kent, Learning Disability England, Challenging Behaviour Foundation, and ourselves. 

Our charity is supporting an autistic lived experience advisory panel (LEAP) who meet with the research team regularly, sharing views and experiences to help make decisions and form project documentation and next steps. The team is committed to centring autistic people, people with learning disabilities, and their families throughout each stage of the project.  

Professor Karen Bunning at University of East Anglia, said: "At the heart of project CECiLiA is a real desire to hear the real-life stories of people who have been through a C(E)TR. It is only by listening to people can we truly understand their experiences and move towards positive change."  

Anoushka Pattenden, Research Partnerships and Participation Manager at the National Autistic Society, said: "It is widely recognised that many people who are autistic or have learning disabilities are stuck in inpatient settings which are inappropriate to their needs. We are pleased to be supporting this research which presents the opportunity to understand experiences of C(E)TRs and to identify best practice. The project is collaborative in approach, with genuine and invaluable steering by panels of autistic people, people with learning disabilities, and parents and carers."
 

Do you have experience of C(E)TRs? 

The study is at an exciting stage, and the research team are keen to hear from you: 

• Have you been to a Care, (Education) and Treatment Review (C(E)TR) in the last year or were you supposed to have one that did not happen?
• Are you an autistic person, person with learning disabilities, or autistic person with a learning disability aged over five years old?  Or are you a family member or carer of a person from one of these groups?
• Have you taken part as a member of the C(E)TR workforce, including an expert by experience or health, education, and social care professional? 

If you answered ‘yes’, Project CECiLiA invites you to take part in a 30-minute online survey to tell us what you think about C(E)TRs. For those who would prefer to talk to someone, our research team is offering to go through the survey as a structured interview or Talking Mats interview, which is a tool to support involvement of people with learning disabilities. 

To find out more, and sign up, please follow this link and fill out the relevant expression of interest form.  

Please share with anybody who may be interested, we are keen to capture lots of experiences.
 

Further information:

• Find out more on the project website
• Find out more about our research work