CQC Acting Together Programme

The Care Quality Commission (CQC), which checks whether hospitals, care homes and care services are meeting Government standards, announced its Acting Together programme in August 2011. This is a new partnership scheme to ensure that people who use services and their relatives can advise and contribute to its regulatory work, for example, through participation in inspections, literature reviews, training for newly recruited and existing CQC staff and thematic projects.

The Challenging Behaviour Foundation (CBF) is responsible for providing family carers – referred to as “experts by experience” – who can demonstrate that they have significant experience of caring for somebody who is now over 16 years old and has a learning disability, displays behaviour described as challenging and/or has a mental health need or profound and multiple learning disabilities (PMLD), summarised as complex needs

Vivien Cooper, Chair of Trustees of the CBF said:

“Family carers of individuals with learning disabilities and high support needs have a wealth of experience in understanding the needs of their relatives and recognising good support and services. I am delighted that the CBF will be working with the CQC, supporting family carers of people with complex needs to influence and improve support and service provision.”

The first major task for the CBF was the CQC Learning Disability Review (LDR) prompted by the Winterbourne Scandal in May 2011. 150 inspections of services similar to Winterbourne View took place between September 2011 and February 2012. Each inspection team included a lead inspector, portfolio inspector, professional advisor and two experts by experience – somebody who had experience of using services and a family carer. The CBF recruited and trained experts by experience specifically for the CQC LDR.

Reports from completed inspections are already being published and include the views of family carers who were interviewed and also the experts by experience who participated in inspections. A National Review report will also be published giving an over-arching summary and will include an appendix outlining specifically the views of expert by experience family carers who participated in the CQC LDR.

Pete Crane, family carer – expert by experience, from the North West said:

“I watched the BBC TV Panorama expose of events that had taken place at Winterbourne View. As a parent carer to someone who could so easily have been living there, I was shocked and dismayed by the haunting images and sounds.

The CBF gave me the opportunity to do something positive about the situation. They had been tasked by the CQC to provide family carers whose job would be to bring a new and fresh pair of informed eyes to the inspection process.

It gave me the opportunity to do something practical and meaningful for people living within institutional settings. As a parent carer I had a very clear idea of how my son should be treated and would always conduct my inspections from this point of view. The CBF organised an excellent training session for me, explaining how service providers should be following a Person Centred Approach based upon the social model of disability – and how this fitted into the legal standards the CQC Lead Inspectors would be looking for.”

Audrey Giles The CBF will continue to work with the CQC to promote and develop the involvement of family carers in its work.