An Evaluation of Care (Education) and Treatment Reviews for People With Learning Disabilities and Autistic People

NCT06918483 | Not Yet Recruiting DMC

• 2 other identifiers: 350098NIHR 158265
• Study Type: observational
• Target: 695
• Locations: 0 countries
• Sites: N/A

Brief Summary

Aims In this research project, we will determine whether Care (Education) and Treatment Reviews are helpful for people with learning disabilities and autistic people and their families. Background Care (Education) and Treatment Reviews were started in 2014 to help get autistic people and people with learning disabilities out of psychiatric hospitals and to prevent their admission to psychiatric hospitals. Care (Education) and Treatment Reviews involve an independent panel including an Expert by Experience, a clinician, and a commissioner who is responsible for paying for an individual's care. The autistic person or the person with learning disability and their family also attend the meeting. The focus of a Care (Education) and Treatment Review is to either prevent a person from being admitted to a psychiatric hospital in the first place, or to help someone who is already in hospital, get out. They do this by trying to work out ways to overcome barriers that might be stopping someone from leaving hospital. However, we do not know if Care (Education) and Treatment Reviews stop people from being admitted to a psychiatric hospital in the first place, or help people already in hospital get out. Method Our project has four stages. In Stage 1 we will work with the members of our Lived Experience Advisory Panels to co-produce survey questions. We will design surveys for people with learning disabilities and autistic people, families and carers, Care (Education) and Treatment Reviews panel members, and health and social care professionals to complete. We will share these surveys with as many people as we can nationally. We will make adjustments so that people with learning disabilities can take part in our surveys. We know that individuals with moderate to severe learning disabilities and younger children will not be able to complete the surveys and so we will use other ways to gather their views and experiences. We will also try to work out how much it costs to have a Care (Education) and Treatment Review . Within Stage 2, we will find out how patients in hospital are doing over time, by attending Care (Education) and Treatment Reviews, CPA, and other patient meetings. We will ask people, including people with moderate and severe learning disabilities to take part in some interviews with us, ensuring we adapt the interview process, so it is accessible. We will use the information from these interviews to work out whether Care (Education) and Treatment Reviews are helping people and making things better. In Stage 3, we will look at the anonymous data that is collected by the NHS about everyone with a learning disability or autism who is admitted to hospital. We will work out what sorts of things helped them and what sorts of things did not help them get out of hospital. We think we will have data that covers over 11 years. Within our final stage, Stage 4, we will bring together all of the information we have collected from the different stages of the research to work out what it tells us. We will use the information along with input from our Lived Experience Advisory Panel members to co-produce and share reports and information about what we have found out. We will also co- develop and publish good practice guidance for doing Care (Education) and Treatment Reviews and make sure our guidance is shared in different ways and to different people who need it. Patient/public involvement We have partnered with Learning Disability England, the National Autistic Society, and the Challenging Behaviour Foundation who will each lead one of our three Lived Experience Advisory Panels: (1) people with learning disabilities, (2) autistic people, and (3) carers and family members. We will have regular meetings with each Lived Experience Advisory Panel to make sure we they can provide input throughout the study. They will help us to design the surveys and interviews, interpret our findings, share the findings and co-produce and publish our good practice guidance in different formats for different target audiences. Each advisory panel will meet separately but we will bring them together once a year to benefit from their combined input. Our project has been developed collaboratively with Learning Disability England, the National Autistic Society, and the Challenging Behaviour Foundation who all have experience of being involved within Care (Education) and Treatment Reviews. Learning Disability England, the National Autistic Society, and the Challenging Behaviour Foundation will be core members of our study management and study steering committees. Further, a nurse with significant learning disability and autism experience, Expert-by-Experience, and Care (Education) and Treatment Review panel chair is a co-researcher. A carer of a man with severe learning disability is also a co-researcher.

Conditions

Autism Spectrum Disorder; Intellectual Disabilities

Keywords

Care (Education) and treatment reviews (C(E)TRs); Autistic people; People with an intellectual disability

Outcome Measures

Primary Outcomes (1)

• Experiences of all stakeholders, including people with learning disabilities and autistic people and their families, when taking part in C(E)TRs

  Data will be gathered through national surveys; attendance at C(E)TRs, and CPA meetings to track individual progress over time, the collection of naturalistic data from the meetings, and though semi-structured interviews with attendees; and anonymised data available from NHS Digital for children and adults.

  National surveys will be open for 8 months from their launch; data collection for case studies and associated semi-structed interviews will open for 15 months from the point of recruitment.

Study Arms (4)

A person with a learning disability, or an autistic person

Inclusion criteria: A person with a learning disability, or an autistic person who has received or taken part in a C(E)TR within the last 12-months including Blue Light (community) C(E)TRs; is aged 5 or older (i.e. eligible to attend school at Key Stage one) For those aged 16 years and older who lack capacity to make a decision about taking part in this research, advice indicating that they should be included from either a personal or nominate consultee For those aged 15 and younger, consent from the person or organisation with parental responsibility Exclusion criteria: Only having received or taken part in Independently Chaired Care (Education) and Treatment Reviews (IC(E)TRs) within the last 12-months. IC(E)TRs are only for those held within long-term segregation and are out of scope Anyone aged younger than 5 years

A family member or carer of an autistic person or person with a learning disability

Inclusion criteria: A family member or carer of an autistic person or person with a learning disability who has 1. received or taken part in a C(E)TR within the last 12-months including blue-light C(E)TRs and 2. is aged 5 or older (i.e. eligible to attend school at Key Stage one). Exclusion criteria: 1\. A family member or carer of an autistic person or person with a learning disability who has only having received or taken part in Independently Chaired Care (Education) and Treatment Reviews (IC(E)TRs) within the last 12-months. IC(E)TRs are only for those held within long-term segregation and are out of scope; or who is aged younger than 5 years.

A C(E)TR panel member (Chair, Expert by Experience or clinical member)

Inclusion criteria: A C(E)TR panel member who has taken part in a C(E)TR within the last 12-months including blue-light C(E)TRs. Exclusion criteria: Staff who have only taken part in Independently Chaired Care (Education) and Treatment Reviews (IC(E)TRs) within the last 12-months. IC(E)TRs are only for those held within long-term segregation and are out of scope

Health and social care professional (including commissioners)

Inclusion criteria: A health or social care professional, or commissioner who has taken part in a C(E)TR within the last 12-months including blue-light C(E)TRs. Exclusion criteria: Staff who have only taken part in Independently Chaired Care (Education) and Treatment Reviews (IC(E)TRs) within the last 12-months. IC(E)TRs are only for those held within long-term segregation and are out of scope

Eligibility Criteria

• Age: 5 Years+
• Sex: all
• Age Groups: Child (0-17), Adult (18-64), Older Adult (65+)
• Sampling Method: Non-Probability Sample

Study Population

People with learning disabilities and autistic people, including children and young people, families and carers, C(E)TR panel members, and health and social care professionals including commissioners.

You may not qualify if:

• Stage 1 (Work Package 1)
• A person with a learning disability, or an autistic person, or a family member or carer of an autistic person or person with a learning disability
• Having received or taken part in a C(E)TR within the last 12-months including blue-light C(E)TRs
• Aged 5 or older (i.e. eligible to attend school at Key Stage one)
• For those aged 16 years and older who lack capacity to make a decision about taking part in this research, advice indicating that they should be included from either a personal or nominate consultee
• For those aged 15 and younger, consent from the person or organisation with parental responsibility
• Only having received or taken part in Independently Chaired Care (Education) and Treatment Reviews (IC(E)TRs) within the last 12-months. IC(E)TRs are only for those held within long-term segregation and are out of scope
• Aged younger than 5 years
• Stage 1 (Work Package 2)
• A C(E)TR chair, clinical member, or EbE or a health or social care professional, or commissioner
• Who has taken part in a C(E)TR within the last 12-months including blue-light C(E)TRs.
• \. Staff who have only taken part in Independently Chaired Care (Education) and Treatment Reviews (IC(E)TRs) within the last 12-months. IC(E)TRs are only for those held within long-term segregation and are out of scope
• Stage 2 (Work Package 3)
• People with learning disabilities or autistic people:
• Who are due to have at least two C(E)TRs within 15-months

Sponsors & Collaborators

• Coventry and Warwickshire Partnership NHS Trust: lead
• University of Birmingham: collaborator
• University of East Anglia: collaborator
• University of Kent: collaborator
• Learning Disability England: collaborator
• The National Autistic Society: collaborator
• The Challenging Behaviour Foundation: collaborator

MeSH Terms

Conditions

Autism Spectrum Disorder; Intellectual Disability

Condition Hierarchy (Ancestors)

Child Development Disorders, Pervasive; Neurodevelopmental Disorders; Mental Disorders; Neurobehavioral Manifestations; Neurologic Manifestations; Nervous System Diseases; Signs and Symptoms; Pathological Conditions, Signs and Symptoms

Central Study Contacts

Louise D Denne, PhD

CONTACT

+44 121 414 3086; l.denne@warwick.ac.uk

Nicholas H Manktelow, PhD

CONTACT

n.h.manktelow@bham.ac.uk

Study Design

• Study Type: observational
• Observational Model: OTHER
• Time Perspective: OTHER
• Target Duration: 695 Months
• Sponsor Type: OTHER GOV
• Responsible Party: SPONSOR

Study Record Dates

• First Submitted: April 1, 2025
• First Posted: April 9, 2025
• Study Start: April 15, 2025
• Primary Completion (Estimated): August 31, 2026
• Study Completion (Estimated): September 30, 2027
• Last Updated: April 9, 2025

Record last verified: 2025-04

Data Sharing

• IPD Sharing: Will not share