Holloway mum leads national campaign demanding closure of institutions for people with autism and learning disabilities
- Credit: Archant
The mother of a severely autistic Holloway man is leading a national campaign against the detention and abuse of people in private care “institutions”.
Leo Andrade has organised protests every day this week across the country. Today, she and other parents of children in assessment and treatment units (ATUs) were outside the Department of Health and Social Care in central London.
Leo endured an agonising six years while her son Stephen, 24, was held in ATUs more than 70 miles from home, first in Northampton and then in Clacton-on-Sea.
He returned to London in time for Christmas last year, but he has still not adjusted to his new home in Hillingdon where he receives round-the-clock care.
Leo blames his ongoing trauma on years of abuse and "appalling treatment" while in Essex. In Oaktree Manor, run by The Priory, Stephen was dosed up on eight different anti-psychotic medications and regularly self-harmed.
Leo also says when he returned he insisted on sleeping on the floor, because that's what staff made him do at Oaktree.
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"Worse than that he started walking on all fours and barking like a dog," she added. "I think other people in the ATU must have made him do it."
ATUs provide care for people with learning disabilities or autism. Many patients are detained under the Mental Health Act. They were conceived to provide short-term stays for people in crisis but the average time spent in the units is now five-and-a-half years.
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In 2011 a Panorama investigation revealed horrific abuse at Winterbourne View in Gloucestershire, after which the government promised to move all inpatients into community-based housing in three years under its Transforming Care programme.
That didn't happen and in 2015 a fresh vow was made to cut the numbers by between 35 and 50 per cent by March this year. That should have seen a drop to between 1,300 and 1,700 but as of last month there were still 2,250 inpatients - an increase from April.
The rise comes amid a review into the units by the Care Quality Commission (CQC), commissioned by health secretary Matt Hancock in November, and an inquiry launched the following month by parliament's Joint Committee on Human Rights.
An interim report published by the CQC last month, following visits to 35 units, found staff lacked training, people were not receiving high quality care and some were having to stay there longer because of a lack of provision back home.
Mr Hancock welcomed the findings and ordered a review into the care of every ATU patient in the country. The government also vowed to get experts round a table to develop another new care model.
Mr Hancock said some of society's most vulnerable people were "being failed by a broken system".
"I have been deeply moved and appalled by the distressing stories of some people spending years detained in mental health units," he said. "These vulnerable people are too often left alone, away from their families, friends and communities. I will not let these people down - they deserve better."
Meanwhile another scandal was uncovered by Panorama at Whorlton Hall in County Durham earlier this year.
Leo, who met Mr Hancock last month, has had enough of waiting and decided to take action.
"We are calling on the government to stop using ATUs because of human rights," she said. "We should be making decisions based on families and communities and what is best for the person."
Leo added: "We want the government and NHS England to take responsibility, get people out, and get those institutions closed down. Autism is not a crime, autism is not a mental illness - so why does the system keep putting people in mental health hospitals and institutions?"
Last month saw the highest ever number of "restrictive interventions" such as physical restraints - 3,000, 770 of which were against children.
Leo recalled one alleged instance of abuse shortly before Stephen came home from Essex.
"He had a footprint on his private area," she said. "An agency worker kicked him, the hospital said. His penis swelled to two sizes bigger because of haematoma. Can you imagine the pain?
"I struggled with whether to do a safeguarding report or call the police, because the police do nothing. They say: 'There's the paranoid mother again'. I called Islington Council and a social worker who is a saint said it needed to be reported. So I called the police, but they did nothing.
"When I told the manager, he said: 'Don't worry - he won't work here again.' I said: 'For f****s sake. Do I care if he will never work there again? He will do it again to someone else."
Oaktree Manor is now closing under the Transforming Care programme. In its last inspection by the CQC it received a "good" rating, but for safety it was graded "requires improvement".
A report stated staff's use of physical interventions was high, although it was decreasing. Staff, it said, did not always update patients' risk assessments after incidents. Leo was never allowed to see Stephen's.
An Oaktree Manor spokesperson said: "Patient safety concerns are fully investigated, and robust reporting procedures are in place.
"We take immediate disciplinary measures against staff, including agency workers, if needed, and support criminal proceedings where appropriate."
On the closure, they added: "We are working closely with the NHS, patients and their families to ensure a smooth transition for patients to suitable alternative accommodation, and have already achieved this successfully for many."
Learning disability charities Mencap and the Challenging Behaviour Foundation (CBF) has been campaigning against ATUs since the Winterbourne View scandal.
Mencap policy chief Dan Scorer said: "The government's lack of urgency on this issue is unforgivable. Instead of seeing a decrease month on month we're now seeing the numbers of people locked away increase.
"We've had report after report. We need cross-government action urgently, not just warm words from the health secretary. The impact on individuals and families is horrific.
"This is a human rights scandal that can't wait for Brexit to be sorted out, it needs addressing by the government now."
CBF CEO Vivien Cooper added: "Where is the senior leadership and cross-governmental plan for education, health, social care, and housing? How long before there is action that makes a difference to end this scandal?"
Family campaign group Seven Days of Action argued in 2016 that people with learning disabilities and autism had become "commodities" in a system where the NHS is highly dependent on private providers. The group estimated the market was worth around £284m in 2015.