An evaluation of Care (EduCatIon) and treatment revIews for people with Learning dIsabilities and Autistic people (CECILIA)

Background: In 2014, Care (Education) and Treatment Reviews (C(E)TRs) were implemented to reduce the number of people with learning disabilities and autistic people being admitted to psychiatric hospitals and to encourage discharge of those already within hospital. However, we know very little about the mechanisms by which C(E)TRs may work and whether they can be effective.

Aim: To undertake an evaluation of C(E)TRs using mixed methods across four stages with children and adults with learning disabilities and autistic children and adults across a range of inpatient settings, including those in the community who receive a C(E)TR because they are at risk of admission.

Method: This project has four stages and uses mixed methods. Within Stage 1, we will complete online national surveys with a minimum of 150 people with learning disabilities and autistic people, a minimum of 150 families and carers, and a minimum of 350 C(E)TR panel members, and health and social care professionals. We will also recruit a further 25 people with moderate to severe intellectual disabilities and use adapted methods to capture their voice within structured interviews.

Within Stage 2, we will attend C(E)TRs, and CPA meetings for 20 people to track progress over time and undertake up to 180 semi-structured interviews with attendees over 15 months. We will complete a documentary review of C(E)TR paperwork, capture communicative exchanges occurring in meetings using applied linguistic analysis to determine the relative contributions of individuals to the decision-making process, and we will develop a descriptive temporal pathway model of the C(E)TR process over time and how they affect care pathways.

In Stage 3, we will model relationships between C(E)TRs and numbers of admissions, discharges, inpatients, types of inpatient service, and length of stay over time using anonymised data available from NHS Digital. We will also explore the potential cost implications of C(E)TRs in this work package. We anticipate having data for 132 months (11-years).

In Stage 4, we will combine our quantitative and qualitative data to generate conclusions and develop and publish good practice guidance for C(E)TRs outlining best practice for maximising participation inclusive of practical resources and tools.

Timeline for Delivery: The project will be delivered over 36-months. Stage 1 is scheduled to last 9 months, while Stage 2 will last 15 months. Stage 3 is scheduled to last 7 months, and Stage 4 is 4 months.

Anticipated Impact and Dissemination: The findings from this study will be used to produce good practice guidance for conducting C(E)TRs inclusive of practical resources and tools. It is anticipated that this will lead to improvements in the way these reviews are conducted leading to benefits in improved care for people with learning disabilities and/or autistic people.

This may reduce the need for hospital admission or decrease length of hospital stay. We have partnered with Learning Disability England (LDE), the National Autistic Society (NAS), and the Challenging Behaviour Foundation (CBF) who will each lead one of our three Lived Experience Advisory Panels (LEAPs) who will participate in co-production and co-design and dissemination.

In addition to traditional dissemination methods (peer-reviewed publication, funder reports, conference presentations), together with our PPI partners, we will place information about our study and our good practice guidance on their websites and within their newsletters. We will develop accessible videos about our study and our findings together with our PPI partners and place them in the public domain which may include video-blogs.

We will hold joint dissemination events following the completion of this project to ensure maximum reach which will include specific events to showcase our good practice guidance. We are experienced in running these events with our partners.