Autistic man locked in solitary confinement for ten years

Published by The Mail on Sunday (19th May, 2019)

An investigation by the Care Quality Commission discovered that a man with autism or learning disabilities has been locked up in solitary confinement for almost a decade after being sent to secure hospital units.

The watchdog’s inquiry, ordered by Health Secretary Matt Hancock after The Mail on Sunday exposed shocking treatment in secretive units, also found a child incarcerated alone for almost two and a half years.

The devastating report, due to be released on Tuesday, concludes ‘the system is not fit for purpose’ because people with autism and learning disabilities – many still children or teenagers – are being sent to unsuitable units often filled with untrained staff, where their conditions can worsen. The CQC accepts that this is a major human rights issue.

Its report admits the organisation was so disturbed by the evidence it saw that it plans to overhaul its own monitoring of units that use segregation.

The Health Secretary has agreed to two key recommendations: to order urgent reviews of the worst 120 cases of seclusion and segregation – reporting by the end of the year – and the establishment of an independent body to speed up discharges and improve the care system.

The new expert body, made up of doctors, patients, families and carers under a high-profile chair, will report directly to the Health Secretary and Simon Stevens, chief executive of National Health Service England. Another report tomorrow by the Children’s Commissioner will highlight the increase in children with autism or learning disabilities held in mental health hospitals, despite repeated government pledges to slash their numbers.

Mr Hancock said he had been ‘deeply moved’ by the plight of those locked in care and was determined to act on the CQC’s report, which calls for stronger safeguards against ‘punitive cultures of care’.

‘As a society, we’ve got a duty to get this right,’ he said. ‘Each of these cases is complex and hugely challenging. We’ve got to get the right care to each and every one of these vulnerable young people.

‘But I’m not going to over-promise. So we will look at each case, starting with the most challenging, and make sure they have a plan to be in the best care for them.’

The Mail on Sunday’s investigations have exposed how hundreds of people with autism and learning disabilities are being shut in inappropriate units where they are routinely abused, forcibly sedated and stuffed into small padded cells.

The campaign found teenagers and young adults taken away against the wishes of their families when they seek support, then violently restrained by teams of up to six adults and even fed on the floor in seclusion through hatches like wild animals.

The CQC report, an interim review of restraint and seclusion, investigated 62 cases of long-term segregation, and visited 35 wards. Many of these patients, it was found, had been admitted into mental health hospitals – where families saw ‘deterioration’ in health – due to lack of support in the local community.

It also discovered some hospitals lacked staff with the right skills or training to care for autistic people, who comprise ‘a high proportion’ of those in segregation, while several cases it examined ‘were not receiving high-quality care and treatment’.

This included bare rooms used for segregation, patients forced to eat food on their laps from takeaway containers, and having access restricted to families. Funding disagreements were found to be thwarting discharges.

Mr Hancock will demand that the final report, due in March 2020, is finished later this year.

‘We need to rethink the whole system for care for those with the most complex needs and behaviour that challenges,’ said Paul Lelliott, CQC’s lead for mental health, who headed the inquiry, on a recent blog post.

And what of the person in the CQC report who has been stuck in segregation for almost a decade? Though he is not identified, it may be Tony Hickmott, a 42-year-old autistic man being held in a three-room living space at Cedar House, a 40-bed unit near Canterbury run by Huntercombe.

He has been incarcerated for almost 19 years, to the despair of his elderly parents. ‘He has started talking to himself now,’ said his mother Pam, 75, a retired hospital supervisor from Brighton. ‘He’s only got autism but he’s been left so damaged.’

Huntercombe says isolation is only used as a last resort.

The second report published this week is by Children’s Commissioner Anne Longfield, and called ‘Far Less Than They Deserve’.

It sharply criticises the system for failing children with autism and learning disabilities as rising numbers are locked up and then detained too long in hospitals.

It says 250 children with learning disabilities or autism were identified in mental health hospitals in England in February, compared with 110 four years earlier. Many are aged under 14, with the youngest just ten. About one in seven had spent at least a year in their current hospital – yet any could have returned home if community support was available. Restraint, meant to be used as a last resort, was ‘almost a matter of routine’.

‘I have heard horrific stories from parents who feel absolutely powerless to do anything as their child is locked away for months or even years,’ said Longfield. ‘This is shocking and heartbreaking. I’ve spoken to children in mental health hospitals who are frightened and whose childhoods are being ruined. It is also clear some children are receiving very poor quality of care – I heard of one boy who was not washed for six months.

‘Very vulnerable children are being let down, and it is time for government to act to stop this happening.’ The influential joint committee on human rights in Parliament is also preparing a highly critical report after members were moved to tears by evidence from families. It is likely to say the NHS is breaching three key rights: to family life, not to be wrongfully detained, and not to be subjected to inhuman or degrading treatment.

‘These findings show what families have always said: people are being failed and unlawfully denied their most basic human rights,’ said Mark Brown, of the Rightful Lives campaign group.

‘But yet again, those in government who can make a real difference are just tinkering at the edges of barbarity.’

Politicians pledged to empty assessment and treatment units (ATUs) of people with learning disabilities after a BBC Panorama documentary in 2011 exposed abuse at Winterbourne View care home in Gloucestershire, leading to six staff being jailed.

Yet figures for March revealed at least 2,260 such people still in hospital units in England, more than half on secure wards. The target, whose timeframe was recently extended by Mr Hancock, had been to reduce numbers to as low as 1,300 by now.

Panorama has a new expose called ‘Undercover Hospital Abuse Scandal’, due to be screened on Wednesday, which will reveal patients being ‘mocked, taunted and intimidated by abusive staff’ at another unit for people with learning disabilities.

At least 40 people with autism or learning disabilities have died in ATUs since 2015 – an issue that will be in the spotlight this week with the anticipated release of a review into the high rate of needless deaths of such patients across the NHS.

‘This whole system is horrific,’ said the father of a 17-year-old girl with autism, a high achiever at school who started self-harming inside three units over the past four years. ‘You walk around and hear the screams of children as they are being held down and restrained by adults.’

At one privately run secure unit, his daughter was supposed to have two carers, yet ended up in A&E eight times in five months. ‘We live each day in fear of that call you never want to hear,’ he said. ‘I can’t believe people get better in these places – they are just used to hold people society can’t deal with.’

How we exposed the cruelty being inflicted on thousands

It all began with Beth. When I spoke to her father last October, he described a teenage girl who loved animals, fresh air and music. Yet his daughter was locked up in horrific conditions: shut in solitary confinement, fed through a hatch like a wild creature and growing obese from drugs and inactivity.

This tragic teenager, then 17 and incarcerated at that point for almost two years, had not committed any crime. Yet she was held with fewer human rights than a convicted killer simply because she has autism.

And she is far from alone – just one of thousands of victims of a callous state that treats such people and their families with astonishing cruelty when they seek help.

As the father of a woman with learning disabilities and a journalist who campaigns on such issues, I knew of the hollow promises to empty secure units after a BBC Panorama exposed abuse at Winterbourne View care home in 2011.

And I knew that more than 2,260 people were still trapped in supposedly short-stay assessment units, that the number of children held in them was rising fast, and that the costs were approaching half a billion pounds a year.

Yet I had little idea of the full and distressing extent of the cruelty until that conversation with Beth’s father.

The more I wrote about such cases after this newspaper launched its campaign to force action, the more I was contacted by other families with similar desperate stories of lives torn apart.

People such as Adele Green, whose words, spoken with such dignity, will forever haunt me as she told of seeing her 13-year-old son Eddie for the first time after an initial month in a hospital that was supposed to help him.

This sports-loving boy, so fond of silly jokes, had been stuck in a small padded cell where he slept on a plastic mattress, was fed through a hatch, ate on the floor and had just a bowl for a toilet. Sometimes he was handcuffed, while his body was becoming bloated from inactivity and being pumped full of powerful drugs. ‘

My life has never been the same from that moment,’ said Adele, a risk assessor and mother of four from Bristol. ‘I felt I had failed my child. He had gone from the warmth and security of our home into this horrific environment.’

Eddie – who turns 20 in two weeks’ time – remains in captivity for displaying signs of autism and learning disabilities.

Beth too is still imprisoned – despite pledges made in Parliament after my article was published, her father forced to sue the NHS for action.

And thousands more like them, sectioned when they seek support.

This is an unusual issue since there is widespread agreement that the system is failing. Autism and learning disabilities are not conditions to be cured, yet these people are sent to unsuitable psychiatric institutions that often only intensify stresses.

It is not even about cash. Secure units cost up to £730,000 a year per person, while community provision can be cheaper, as well as more effective and kinder. But this is provided by struggling councils, so many prefer to dump the problem on the NHS.

We found one man held 18 years at an estimated cost exceeding £10 million. Others do not have families to fight for their freedom.

There is no shortage of warm words. Matt Hancock, the Health Secretary, said he was ‘deeply shocked’ by our revelations and ordered the Care Quality Commission to review the abusive restraint and prolonged seclusion exposed by our stories.

Our reports also sparked two parliamentary probes – investigations by the Children’s Commissioner for England and a Scottish inquiry into why people with autism and learning disabilities were held alongside child killers in state psychiatric hospitals.

This week there will be small steps forward as the CQC issues its initial report and Mr Hancock promises to review the worst cases highlighted by the watchdog. He will also set up an independent body to drive forward discharges.

But it is hard to be hopeful when we have seen such things before. It is baffling why the Health Secretary does not simply force through change by insisting all cases are reviewed urgently with ring-fenced funds and discharge plans agreed within a year. Where is the leadership?

This scandal has exposed other flaws in society’s underbelly: the private firms profiteering from misery; the woeful child mental health services; the creaking social care system, the lack of joined-up services, the under-diagnosis of female autism.

Yet ultimately this issue boils down to one question: why do we tolerate such cruelty towards one fragile slice of society, which would spark outrage if perpetrated against animals? 

Categorised in: Disability, Health, home page, Public policy