Learning disability and autistic people reluctant to provide feedback on care

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CQC research reveals that people with a learning disability and autistic people are more reluctant to give negative feedback on their care in case it increases pressures on staff or services. This is why CQC is calling on people with a learning disability and autistic people, and their loved ones, friends and carers to give feedback on their care.  Throughout the pandemic CQC has acted on the intelligence it receives to ensure high quality care and people’s human rights are safeguarded, with over 3500 risk-based inspections completed since April 2020.  

CQC has made improving care for people with a learning disability and autistic people a priority, which is why Debbie Ivanova, the Deputy Chief Inspector of Adult Social Care is leading a new programme of work to transform the way they regulate services for people with a learning disability and autistic people. This work will focus on improving the way they register, monitor and inspect services and use the full scope of their regulatory powers. 

Debbie Ivanova 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.” 

Tom Purser, Head of Campaigns at the National Autistic Society says: “The CQC’s Out of Sight report last year found many shocking examples of undignified care. And our own research suggests two in three autistic adults don’t get the support they need. 

“The care system needs urgent and properly funded reform. This must be informed by autistic people and their families’ experiences of health and social care services. We encourage people to share their feedback, good or bad, with the CQC.” 

CQC’s research 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.  

In order to address issues around closed cultures, CQC released a report in October 2020, ‘Out of Sight – who cares?’ – it 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 told CQC how they ended up experiencing restrictive practices because care hadn’t been provided at the right stage, in the right way. They often reached out for help in the community and didn’t receive it, or the help they received did not meet their needs. 

CQC will always call out poor care when it sees it and is working with the rest of the system to influence change – and getting feedback from people with lived experience is essential to this. 

Because We All Care Campaign  

The Because We All Care campaign reaches its latest landmark date in the ongoing campaign this Thursday, 4 March, with a particular focus to encourage people with a learning disability and Autistic people to share their feedback and experiences on care with CQC. 

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 you need. 

How people can share their views  

People can share their views on-line:  

With Healthwatch https://www.healthwatch.co.uk/because-we-all-care   

With CQC https://www.cqc.org.uk/give-feedback-on-care  

People can also contact their local Healthwatch directly to share and experience or get advice and information. 

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