>> Iliana Magra, The New York Times
Published: 2019-11-11 18:05:37 BdST
Matt Hancock, Britain’s health secretary, publicly apologised to her Saturday “for the things that have gone wrong in her care.” Calling her case “incredibly difficult and complex,” he said that she was set to be moved to “a more appropriate setting before Christmas.”
The case has drawn national attention to the detention of hundreds of young people with autism or learning disabilities in Britain, and prompted an inquiry into the mental health system by a committee in Parliament. The conditions were so dire, the committee said, that the lawmakers had “lost confidence” in the system and its regulators.
“The brutal truth is that we are failing to protect some of the most vulnerable young people,” the Joint Committee of Human Rights said in a report released this month. “Indeed, we are inflicting terrible suffering on those detained in mental health hospitals and causing anguish to their distraught families.”
The lawmakers called for an overhaul of the system, citing the testimony of parents and detained young people who described bruises and broken limbs, long stretches in total isolation and hours without treatment for physical injuries. As of July, more than 2,000 people with severe learning difficulties or autism were being held in institutions, including 680 people ages 0 to 24, the report said.
“It feels like some sort of nightmare,” testified one unnamed witness, a young man with learning disabilities. “It was not a safe place. It was not a treatment room. I got no assessment or treatment done. There was no care.”
Bethany’s case was also cited: Lawmakers said she had “spent most of her time in conditions that amounted to solitary confinement, with no access to treatment or therapy.”
Neither Bethany nor her father, Jeremy, can be fully named because of a court order in the case. Many details of the case are not publicly known, including why officials declared Bethany a risk to herself and others in December 2016. She has spent most of the past three years in near total seclusion.
Her autism manifests with “all-round anxiety,” her father, Jeremy, said by phone Sunday. “Imagine you are walking through a multistory car park, late at night, it’s dark, suddenly the lights go out and you hear footsteps behind you — that anxiety level is Bethany’s baseline of anxiety,” he said.
He recalled the first time he saw her after she was taken to St. Andrew’s Healthcare in Northampton, England, in December 2016 under the Mental Health Act, which allows authorities to mandate detention in some cases.
“I wasn’t even told she was in seclusion,” he said. “I was led through a series of corridors, it was one locked door after another down these corridors,” he said, adding the scene resembled one from the Hollywood thriller “The Silence of the Lambs.”
He then saw his daughter behind a window.
“I had to kneel down at the hatch to talk to her,” he said. “It was horrific, barbaric.”
Local authorities said she was taken to St Andrew’s temporarily, so her medication could be reviewed and she could receive therapeutic intervention.
But within 10 days she was put into what her father had previously described as a “cell.” And, in accordance with the Mental Health Act, she was stripped of her legal rights to freedom, he said Sunday.
She was briefly moved to a “community placement,” funded by the local council. But after having lived in isolation for more than two years, she was quickly overwhelmed by having to run a house on her own, her father wrote in a post on his blog.
After that she went to a temporary setting in an adolescent psychiatric intensive care unit. She grew to trust the staff there, visited the grounds and eventually was allowed outside the unit in a car.
A few months after she turned 18, she was moved to a medium-security hospital in Wales. She has lived there since June, in a single room 10 feet wide, with green-tinted walls and fluorescent lighting, her father said. There is no furniture — just a 4-inch mattress, an en-suite toilet and a shower.
A window allows sunlight to filter in, but it’s too high for her to look out, Jeremy added.
He sued the National Health Service England, the local authorities and St. Andrew’s hospital to challenge her detention at St Andrew’s from December 2016 to February 2019.
The parties reached an agreement at mediation in September, and both NHS England and St. Andrew’s Healthcare accepted that the care that Bethany received had not always complied with standards.
“This affected her well-being and made it harder for her to return to live in the community,” they said in a joint statement that was posted in Jeremy’s blog. She remains in the medium-security facility in Wales.
Hancock, the health secretary, called Bethany’s case “heart-rending” and said Saturday that he has insisted on “a case review of every single person in those conditions.”
An NHS investigation report, released last month, found that “psychological harm and Beth’s human rights” were “inadequately considered” during her seclusion and segregation, adding that her physical environment was “inappropriate.”
Jeremy said Sunday that he had first heard of the health secretary’s new plan to move his daughter the day before on British television, as Hancock apologised to Bethany during an interview with Sky News.
He said the last time he had spoken with the health secretary was last year; he accused him of making up the pledge “on the spot” and of “electioneering” before Britain’s general election on Dec. 12.
“Any move for Bethany needs to be properly planned, properly resourced, but, more importantly, properly transitioned,” he said.
“You cannot just lift her on one day from a surrounding and drop her stone-cold into a new one,” he said, adding that she would need to learn to trust the staff, and they would need to learn how to work with her.
Since Jeremy started speaking to the British news media again in the last 10 days, there has been a dramatic change in Bethany’s care, he said. She is now allowed to go to the courtyard, sometimes for two to three hours a day.
Harriet Harman, a lawmaker for the Labour Party and chairwoman of the parliamentary committee, said that regulators had failed to sufficiently check the system.
“It has been left to the media and desperate, anguished parents to expose the brutal reality of our system of detention of people with learning disabilities or autism,” she said. “The horrific reality is of whole lives needlessly blighted, and families in despair.”
The committee has recommended legal changes that would narrow the Mental Health Act criteria to lessen the risk of inappropriate detention. About one in 100 people in Britain have autism spectrum disorder, according to the NHS.
Jeremy, a former teacher who became a truck driver to devote more time to his daughter, is hopeful that, given the right support, Bethany will be able to lead “as near a normal life as anybody else.”
“Beth wants to learn to drive, she wants to go to work, she wants to have relationships,” he said. “We just need to get her back into the community.”
© 2019 New York Times News Service