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Half of people with a learning disability and autistic people reluctant to provide feedback on care

19 March 2021

New research from the CQC has revealed that people with a learning disability or autism are more reluctant to give negative feedback on their care in case it increases pressures on staff or services. 

Debbie Ivanova, Deputy Chief Inspector of Adult Social Care, said:“Listening to the lived experience of people with a learning disability and/or autistic people has to be at the centre of how we decide to regulate and improve care. It is so important to hear their voices and allow our approach to be shaped by this in order to properly address the challenges of closed cultures and inadequate care.  

“Families and people with lived experience keep telling us that it’s so much harder to speak up in services that care for people with a learning disability or autistic people, and we’ve recognised this. The work I am leading will be about improving the way we can hear from people and making sure that their experiences drive the action we take.” 

CQC research also showed that people with a learning disability and autistic people are more likely to accept health and social care providers offering a lower standard of care as a result of Coronavirus and that more than a quarter (27%) of survey respondents with learning disabilities and autistic people had noticed a lower standard of safety when accessing health and social care during the COVID-19 pandemic– more than double the average.  

The CQC report Out of Sight – Who Cares? Released in October 2020, found that many people with a learning disability and or autistic people are still being looked after in unsuitable hospital environments, and some are subject to high levels of restrictive practice. People with a learning disability and autistic people should be cared for either in their own home, or in their communities, with as much choice as possible.   

People can give feedback on their experiences of care, or those of someone they care for, on the CQC website or through their local Healthwatch. Local Healthwatch organisations can also help you with advice and information to access the support people need.