'Enough is enough' - autism charity chief backs damning report and calls for overhaul of care regulators

IT’S the latest in a long line of damning reports, publicly stating the ‘horrific reality’ often experienced by autistic people and their families due to the incorrect detention of young people in mental health units.

In light of findings by Harriet Harman and the Joint Committee on Human Rights, The North East Autism Society’s chief executive says ‘enough is enough’ and is calling for a complete overhaul of care regulators.

John Phillipson said: “When… when or what will it take for us to say, ‘right – enough is enough’? Well, I’m saying it now. And to be clear, this isn’t just an autism issue. Nor is it a mental health or even a systems and processes issue. This is a human rights issue. And we are failing. I echo the committee’s comments that a regulator failing is worse than no regulator at all. It’s time for radical reform and nothing less than an overhaul will do. This is about human beings. No more!”

Urgent measures outlined in the report include the establishment of a Number 10 Unit, with cabinet level leadership, to urgently drive forward reform and safeguard the human rights of autistic young people or those with learning disabilities, for families to be recognised as human rights defenders, for the law to change in order to ensure the right services are available in the community and that the Mental Health Act must be narrowed to avoid inappropriate detention.

“I’m completely behind this – but let’s not be afraid to dig a bit deeper. You could drive a bus through a pledge to make sure ‘the right services are available’. We need to be robust and thorough in asking what that means, who it will apply to, what the options are and above all else: is this about the needs and wants of an individual or a blanket black and white system?”

It was also stated that substantive reform of the Care Quality Commission's approach and processes should include unannounced inspections taking place at weekends and in the late evening and where appropriate, the use of covert surveillance methods to better inform inspection judgements.

Evidence to the inquiry into the detention of young people with learning disabilities and/or autism was so “stark” and consistent that the Committee says it has “lost confidence that the system is doing what it says it is doing and the regulator's method of checking is not working. It has been left to the media, notably the BBC and Ian Birrell in the Mail on Sunday, to expose abuse.

It was also revealed that too often families of autistic young people, or those with learning disabilities are considered to be the problem when they ought to be the solution and seen as human rights defenders.

The Committee describes the “grim”, predictable pathway to inappropriate detention in these potentially “brutal” circumstances:  Early family concerns raised with the GP or school lead to lengthy waits for assessment and diagnosis while the family struggles on alone, trying to cope. 

Then some trigger – a home move, a parent falling ill or a school place breaking down – unsettles the young person and their condition deteriorates. Professionals meet to discuss what should happen, but parents are not included. The child is taken away from their home and the familiarity and routine so essential to them, often many miles away and placed with strangers. Desperately concerned parents are treated as hostile and as a problem.

Under these conditions, the young person unsurprisingly gets worse and is then put through physical restraint and solitary confinement - which the institution calls “seclusion”. As the child gets even worse so plans to return home are shelved. The days turn into weeks, then months and in some cases even years.

A previous report by the CQC itself in May, into the same issues stated that people visited had typically been in and out of different settings such as schools and different community settings from a young age. Often, moves were triggered by a breakdown of the existing placement. It was almost always the case that the last such crisis had been the immediate cause of a person being admitted to hospital.

Health Secretary Matt Hancock responded at the time by saying he had been deeply moved and appalled by the distressing stories of some autistic people spending years detained in mental health units. 

Adding that, “a small proportion of some of the most vulnerable in society are being failed by a broken system.”

But Mr Phillipson says it will take more than being ‘moved’ to bring the systemic change needed.

“The time for platitudes has been and gone. The May report listed reasons why a young person would become segregated. Damage to property was higher up the list than the dignity of the person involved. What year are we in?”

The report also sets out a series of distressing witness testimonies to the inquiry. As one young man with learning disabilities, Witness A, described to the inquiry: "I did not know what was happening. Looking back at it now, it does not feel real. It feels like some sort of nightmare. It was not a safe place. It was not a treatment room. I got no assessment or treatment done. There was no care. I was just put in this room, and I lay there and went to sleep." And: "He had his arm broken in a restraint, the right humerus bone. His arm was wrenched up behind his back until the bone snapped. He was then not taken to accident and emergency for 24 hours, even though his arm was completely swollen." 

The Committee stated it has no confidence that the Government’s target to reduce the numbers of people with learning disabilities and/ or autism in mental health identifying he biggest barrier to progress is a lack of political focus and accountability to drive change suggesting that a Number 10 unit with Cabinet level leadership is required to urgently drive forward reform.

Mr Phillipson added: “When longstanding cases were revealed showing mass neglect and torture of vulnerable people at Winterbourne View near Bristol I was on a Government advisory committee. So horrific was the criminality that we all swore it could never happen again. And yet here we are once more.

“Well I refuse to let these findings be another one of these. I welcome this information but we cannot become so desensitised to autistic people being failed, abused, locked up, held down, branded mentally ill – or allowed to become mentally ill, that this stops at another shocking headline. These are real people.

“Autistic people are not mentally ill, they are autistic; what they need is to be understood, celebrated, loved and cared for in an environment suitable for their sensory, emotional, mental, spiritual and physical needs. We could start by adding an autism lead into government. And not to be a token response – to hold those who need it, to high accountability.”