The Care Quality Commission’s (CQC) Review of restraint, prolonged seclusion and segregation for people with a mental health problem, a learning disability or autism was published yesterday as an interim report.

As an organisation which has been caring for some of the most severely autistic people in this country for over fifty years it is hard to express how shocked and upset we are by this report.

An information request from the report authors to 89 registered service providers identified 62 people held in segregation. The report authors visited 39 of them. Thirty-one had autism.

Investigators found that many segregation operations were unsuitable, many staff lacked skills. Many of the people in segregation were expressing distress through challenging behaviour. In 26 cases, staff had stopped even attempting to integrate people back onto main wards due to concerns about violence.

The longest time an adult had been segregated was 9.5 years. The longest time for a child or young person was 2.5 years.

What segregation means: Adam’s story – as featured in the report

“Adam (not his real name) was admitted to his current hospital when he was 10. Since admission, he has been confined to a seclusion room with dimmed lighting. The walls of the seclusion room are padded because Adam often throws himself at the walls and bangs his head on them. He had only left the seclusion room 16 times in the 12 months before we visited him.

“Adam soils himself, sometimes smearing faeces. Staff have abandoned attempts to help Adam to learn to use the toilet after early attempts had not been successful. He finds it difficult to tolerate wearing clothes due to the sensory issues associated with his autism. Because of this, he spends much of the time naked.

“Staff had carried out a functional analysis assessment 15 months ago to look at possible root causes of the areas of behaviour that were seen as challenging. Staff had not completed a sensory assessment that might have helped them to better understand Adam’s sensory issues.

“Most of the staff who care for Adam have only received basic online training in autism. There is no plan to remove Adam from long-term segregation or support him to leave hospital. “

As autism professionals we know with absolute certainty that given the right care, people displaying even the most challenging behaviour can be turned around and helped towards a calm, happy life in a way that makes sense for them.

It’s nothing short of barbaric that staff don’t have access to specialist autism training, that people are kept alone for extended periods and that basic human dignities are not observed.

The need for a new generation of autism care is so acute that we are raising funds through our Future 50 appeal to build a pioneering autism crisis centre in Merseyside. Our centre will be an autism-specific build, where specialist clinical staff will work in multidisciplinary teams to ensure the very best care is offered and where the latest technology will be used to help us understand sensory needs.

Our ultimate objective will be to help people through a period of crisis, so they can return to homes in the community.

We are grateful to the report authors for their diligence. We will be reminding the secretary of state for Health and Social Care, Matt Hancock, that his official response has been:

“I will not let these people down – they deserve better.”

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