Torture is the word I used this week to describe the treatment of children and young adults in private and NHS units, following publication of a Care Quality Commission report about the use of restraint and segregation in these places. The report detailed accounts of being locked in rooms without access to the outside, fed through hatches, for weeks, months or even years. One boy had not been washed for six months, while staff had to shout at another young man through a window because there was no equipment to enable communication. They would hold a book up at the window for him to read while he spent most of his time naked under a blanket.
Another long-awaited report commissioned for the NHS was also published on the same day, showing that women and men with learning disabilities die 27 and 23 years earlier than the general population. It’s further evidence of the differential treatment certain people receive in the NHS and the impact it has on their lives.
As I read these reports, I thought about Connor, our 18-year-old son, who died in a specialist NHS unit in 2013 only months after his admission. Within hours of being admitted to the unit, Connor, who was in a clearly distressed and terrified state, was restrained face-down for more than 10 minutes by four staff members. Up to that moment he was a schoolboy who had never experienced any physical discipline. We struggled to tell him off as he was genuinely funny, honest and cheeky.
A couple of days later, I’m still puzzling over the peculiar inability of the government to even discuss whether the CQC report (and others like it) documents torture. I stand by my use of the word on Radio 4’s Today programme. The UN definition of torture states that it includes severe pain or suffering for any reason “based on discrimination of any kind, when such pain or suffering is inflicted by or at the instigation of or with the consent or acquiescence of a public official or other person acting in an official capacity”.
As a society we’ve long been aware of these abuses. On Wednesday night, Panorama aired a new undercover investigation of a hospital for “vulnerable adults”, a full eight years after it exposed torture and abuse at Winterbourne View. Despite the considerable outrage at the time that led to the private unit’s closure, the new reports out this week reveal that these abusive practices are still going on.
The CQC report highlights how untrained staff were unable to engage with some patients, finding it easier and “safer” to segregate them. Patients then became “stuck” for months or years. Local authority or NHS commissioners who are funding these places are clearly paying little attention to the standards of “care” provided, including whether staff are actually trained. The CQC has recognised that the fact the brutal experiences documented do not feature in its inspection reports shows that there are limitations in its inspection processes.
This raises serious concerns about the quality of inpatient units for people with learning disabilities. But they are also much more expensive than community-based support, which can enable people to lead more independent and flourishing lives. Inpatient units can cost between £3,000 and £12,000 a week, with some people incarcerated for years when they could have a better quality of life supported in the community. This doesn’t make sense in light of the £50bn funding black hole in local council budgets.
I am furious that both reports were published on the same day in what can only be interpreted as a deliberate ploy to get them out before Panorama was broadcast. After a morning of media coverage about the CQC report, the NHS Learning Disabilities Mortality Review quietly crept into the public arena. The former social care minister Norman Lamb tweeted his anger that MPs were not able to question the health secretary, Matt Hancock, about these reports and an Urgent Question application was turned down.
Connor was a beautiful, funny, beyond loved 16-year-old who delighted in life, family, London buses and heavy haulage. Parenting a disabled child involves not rocking the boat with services and support, and desperately trying to block out the cliff-edge we know faces our children in adulthood.
I’m now left with a raw clarity. As I type these words, I believe children and adults are experiencing state-sanctioned torture in settings across the UK. Acquiescence – the most generous explanation for what has been happening – is a chilling beast. We need to call out this horror for what it is.
• Sara Ryan is a senior researcher at Oxford University and a learning disability specialist
