Significant lack of progress made to ensure autistic and learning disabled people receive better care

None of the recommendations made by the Care Quality Commission (CQC) have been fully achieved since their last restraint, segregation, and seclusion review, a progress report has found.

The ‘Out of sight – who cares?’ report, published in 2020, looked at the use of restraint, seclusion and segregation in care services for people with a mental health condition, a learning disability or autistic people.

Following its publication, the CQC set out 17 recommendations which were designed to improve care and reduce the number of autistic people and those with learning disabilities in hospital.

Debbie Ivanova, CQC deputy chief inspector for people with a learning disability and autistic people, said progress on the recommendations “have not been happening quickly enough”, with just four of the recommendations partially met and thirteen not met at all.

Nearly one in five have been in hospital for more than 10 years

The progress report found that while the number of people with learning disabilities in hospital has nearly halved since March 2015, there are still too many living in clinical settings when they could be in the community.

Notably, the number of autistic people has considerably increased during the same period, with many forced to move far away from their family homes.

The Assuring Transformation data set for December 2021 shows that, after excluding newly admitted patients and those where the person’s home postcode could not be traced or derived, more than a third (36%) of autistic people and people with a learning disability in hospital are 50km or more away from home.

People are also spending too long in hospital and the report highlights that little has been done to ensure that effective discharge processes are in place.

Indeed, the Assuring Transformation data shows that more than half (55%) of autistic people and people with a learning disability are living in a mental health hospital for more than two years and nearly one in 5 (17%) had a total length of stay in hospital of more than 10 years.

More people are now in long-term segregation compared to 2019

The report also found that not enough progress has been made in reducing the use of restraint and seclusion, and in October 2021, 1,920 people in mental health inpatient settings were subject to restrictive interventions. For those people, restrictive interventions were used 11,355 times.

The authors of the report say that restrictive interventions are often “used inappropriately when people communicate their distress and unmet needs.”
“It is important to remember that each time a restrictive intervention is used, it has an impact on that person and staff; restrictive interventions can cause further trauma to people and add to feelings of dehumanisation,” they add.

High levels of segregation and seclusion were also found, with more people found to be in long-term segregation compared to 2019.

The CQC say they are “very concerned” that this number has risen, as people with lived experience have told the Commission that segregation “dehumanises them and sometimes leads to them giving up hope.”

Meeting people’s individual needs

The report also found:

• Persistent challenges with the commissioning of services, meaning people are fitted into services that are available, rather than providing support tailored to individual’s needs.
• Commissioners are often not working in partnership with people, their families and between different organisations when delivering services.
• Recommendations made in Care (Education) and Treatment Reviews for people who are at risk of admission to a mental health inpatient service are often not being progressed by providers and commissioners.
• Independent Care (Education) and Treatment Reviews have not resulted in real changes to people’s lives as they are still unable to leave segregation and be discharged from hospital.

Ms Ivanova is now calling on partners to “commit to a renewed effort to move forward, sharing responsibility for implementing the changes needed.”

“The focus must be on meeting people’s individual needs. Improved collaboration at system level, provider level and at an individual level with people and their families is also required to deliver the necessary improvements. Services must fit around people rather than trying to fit people into services that can’t meet their needs,” she said.

Investment in community social care services urgently needed

The national disability charity, Sense has similarly called for urgent investment into community care services to ensure autistic people and people with learning disabilities avoid hospital admission and are able to live close to home.

Sense Chief Executive Richard Kramer said: “People with learning disabilities and/or autism should be living in safe, suitable environments where they receive the right care and support. But as this latest review shows, many are still trapped in mental health hospitals unnecessarily, often far from their families.

“Not only does this cause great anxiety and distress, but there have been too many instances of abuse and safeguarding violations, including restraint and isolation, in these settings – this cruel practice must end now.

“We need urgent investment in community social care services so that people with learning disabilities and/or autism have the right support and don’t reach crisis point in the first place. It’s a scandal to see yet another of these damning reports. Instead, it’s time for action and for people’s lives changing for the better.”