CQC - Experts by Experience


The CBF has worked with other voluntary organisations for the last 4 years to promote involvement of Experts By Experience (ExE) within the work of the Care Quality Commission. We have been the support organisation for ExEs who are family carers of adult relatives (aged 16 years old or above) with a learning disability who have behaviour described as challenging and/or mental health needs; or family carers of adult relatives (aged 16 years old or above) with profound and multiple learning disabilities.


We have decided, for a number of reasons, to withdraw from this work and from 31st January 2016 will no longer recruit, train and support ExEs.


The CBF was asked to step in at short notice to do this work for the CQC learning Disability Review (LDR) following the BBC Panorama programme about Winterbourne View. This was important work that identified significant failings in services, (CQC Learning Disability Review) at both a systemic and individual level. Family carer ExEs identified and reported a range of issues (CBF Learning Disability Review Report) and CBF has and will continue to follow these up for individuals and campaign for systemic change.

This work has identified the value of including and supporting family carers with lived experience within the regulation process. Over the 4 years, ExEs have moved from being part of inspection teams to also being included in (but not limited to) registration processes and delivering training to inspectors. ExEs with lived experience have demonstrated their commitment to improving outcomes for individuals who use services. We very much hope that CQC will ensure that this work continues, and that this group of ExEs are valued, supported and listened to in the drive for better lives for people with learning disabilities.

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