Leo Andrade and a photo of her son Stephen, 28. Credit: Mencap
The first time Leo Andrade visited her son Stephen in the mental health hospital, she fainted. Pumped with a cocktail of drugs and held up by aides, Stephen was almost “unrecognisable”, she recalls.
“In the hospital, he begged for me to take him away,” she told The Big Issue. “He begged mummy to take him home.”
But Leo couldn’t take Stephen home. Despite not having a mental health condition, the young man – who has a severe learning disability and is autistic – was wrongly detained under the Mental Health Act for more than six years. And despite promises in the Tory government’s 2019 manifesto, progress to reform the outdated legislation has stalled.
During his six years in hospital, Leo claims Stephen was “over-medicated, neglected and abused”. She didn’t think her son would make it out alive.
Unfortunately, his story is far from uncommon.
According to new NHS data, 2,040 autistic people and people with learning disabilities are currently stuck in mental health hospitals that can’t meet their needs. Ninety-two percent are detained under the mental health act. Two hundred are under 18.
Autism is a lifelong developmental disability which affects how people communicate and interact with the world. It is a spectrum condition, meaning it affects people in a variety of ways. But it is not a mental health problem, and so cannot be treated by a prolonged stint in a mental health hospital.
In its 2019 election manifesto, the Conservative Party pledged to reform the Mental Health Act to prevent autistic people from being held in mental health units for long periods. But progress has stalled. Since the government first published its draft Mental Health Bill more than 450 days ago, 2,135 autistic people or people with learning disabilities have been admitted to hospital – an average of around four people per day.
Thousands of patients are “locked away behind closed doors”, Dan Scorer, head of policy and public affairs at Mencap, told The Big Issue. “We hear about people who are stuck in these units for decades.
“The system has completely failed them.”
Stephen has severe autism. He is a “sweet, gentle, boy,” his mother says – but when he is stressed or overwhelmed he can self-harm or lash out at others.
He was sectioned at 18 and sent to a mental health facility 70 miles from home, initially for short-term care. But it’s very difficult to get out of the system once you’re in it. The average stay in a “noisy, chaotic” inpatient unit is more than five years, Scorer explained: “Patients are being physically restrained, potentially being kept in isolation, and pumped full of anti-psychotic medication.
“Their behaviour deteriorates because the environment is so poorly suited to their needs, which then is used to justify putting them on a longer section.”
The recent NHS Safe and Wellbeing Review found that 41% of people with autism or learning difficulties in hospital did not need to be in there, concluding that their needs could be met in the community.
The government has pledged to reduce inpatient numbers by 50% before March 2024. But at the current pace of change, learning disability charity Mencap estimates that this won’t be achieved until November 2028.
The human toll of this delay is huge. When Stephen was held in hospital, “his human rights were taken from him,” Leo claimed. He was sometimes kept in isolation, and injected with powerful anti-psychotic drugs. His self-harming got worse. But Leo refused to give up.
“I gave birth to my child. I was going to fight for him,” she said.
The tireless campaigner organised protests around the country, even taking a petition for Stephen’s release to Downing Street.
But patient discharges are often delayed due to a low availability of transitional support, said Scorer.
“People are trapped in units, ready to leave. But the right support and housing isn’t ready for them in the community,” he said.
“For many people [it’s] an enormous and difficult transition, having been institutionalised for many years.”
Eventually, Leo’s local council provided Stephen with an adapted house, with 24-hour care from a provider. After more than six years in inpatient units, he was discharged. Now 28, he lives in a community-assisted living facility, with a “loving” team of support workers. Leo visits him whenever she can, but it takes her hours on public transport to get there.
“I wish he was closer, he never wants me to leave. I don’t want to leave him either,” she said.
Stephen may be out of hospital, but he – and his family – are traumatised.
“He wakes in the night screaming for me,” said Leo. “His brother Josh is also autistic. And he says to me, ‘Mum, I need to be very good, or I’ll be sectioned like my brother.’”
The government published its draft Mental Health Bill last year, which would prevent people from being detained for long periods if they do not have a mental health condition. Mencap and other disability charities are calling for the bill to be introduced as a matter of urgency. You can sign the open letter here.
Leo wants to save others from going through what she suffered.
“It happens to too many families. They are treated like criminals, but they have committed no crime.”
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