Why is the UK locking up people with learning disabilities indefinitely?

Watch ITV News reporter Peter Smith's full investigation: 'Locked up'

If you judge a society by how it treats its most vulnerable then what does it say about the UK when people with learning disabilities are still locked up indefinitely?

We are talking about people who are not locked away in secure hospitals for years on end because they’ve committed a crime - they’re incarcerated because there is a lack of funding for appropriate care for them in the community.

Last night, our ITV News investigation into this practice heard about Adam Downs - a 31 year-old man with learning disabilities and autism - who has been detained his entire adult life while his mother fights for his release.

We also uncovered disturbing allegations from a whistleblower - a senior nurse who has worked in these institutions for over 20 years. 

She told us people with learning disabilities and autism are being medicated and sedated when they don’t need to be, and that they are put into solitary confinement for prolonged periods, mainly because there is a shortage of staff in the wards meant to be caring for them.

A lack of staff training means they are misdiagnosing people and medicating them for conditions like psychosis, when it is more likely the inappropriate ward environment that is exacerbating their behaviour.

The noise, the lack of the right kind of sensory stimulation, the sudden changes to routine, being physically touched or even forcibly restrained - all of these are known to be triggering for someone with autism and learning disabilities, and yet all are common practice in the secure hospitals meant to be providing care. 

You wouldn’t shine a flashing light in the face of someone with epilepsy, so why put someone with autism and learning disabilities in an environment that is known to provoke a negative reaction?

To make matters worse, if the patient reacts negatively - lashing out, hurting themselves or others - such behaviour might just be held against them and viewed as a justification for keeping them locked away in that environment even longer. 

That’s the catch 22 of this whole system: the ‘treatment’ contributes to making the patient worse, but the worse the patient gets, the less chance they have of being allowed out.

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To be clear: if someone with learning disabilities and autism has also become mentally unwell, in addition to their existing conditions, they need what anyone would need in that situation: fast and effective treatment that will help them get better before being supported to get back to living their life. 

What they are getting is indefinite incarceration.

At what point can we conclude that a person with learning disabilities and autism in this situation has gone from being a patient to a prisoner?

As our whistleblower nurse told us, “It doesn’t have to be staff hitting patients to abuse them; the system abuses them.”

The morning after our ITV News investigation was broadcast, the Care Quality Commission - the chief regulator for care in the UK - published their own report into the failings in healthcare for people with learning disabilities and autism.

They have focused on eight NHS hospital trusts over a period of two months, and what their report found is damning. 

People with learning disabilities and autism “are still not being given the quality of care they have a right to expect when they go to hospital” they said.

There were “pockets of good practice” highlighted, but after multiple reports and recommendations after the avoidable death of Oliver McGowan in hospital six years ago, “change and improvement is still too slow".

“As well as being a key equality issue,” the report says, “ this is a critical patient safety issue".

In an exclusive interview with ITV News, Debbie Ivanova, director for people with a learning disability and autistic people at CQC, said 'change has been too slow' six years removed from the death of Oliver McGowan

In the case of Oliver McGowan - an 18 year old with learning disabilities and autism as well as epilepsy - when he was admitted to hospital in 2016, he was injected with anti-psychotic medication and suffered complications.

He never left the hospital, and he died soon after.

Oliver’s mother, Paula, wrote the foreword to today’s report where she spoke about how her dog has been given better, more considerate treatment when going to the vet than her son experienced in the healthcare system.

A vet would adjust lighting or noise when her dog became agitated. Her son’s anxiety was given no such consideration.

“Sadly the truth is that huge numbers of staff simply do not have the knowledge or skills in caring and treating neurodiverse patients,” she wrote.

'People who are at the centre of all this are still having to put up with care that is just not good enough'

ITV News has today spoken exclusively to Debbie Ivanova, director for people with a learning disability and autistic people at CQC.

“Our recommendations are not being implemented fast enough,” she told us.

“I am calling on leaders in the system to really think about how are they going to change so we wont have to keep going around the same circle.”

I asked why, after all the reports and recommendations, do these practices continue when they put the lives of people with learning disabilities and autism at risk.

“It’s a good question,” Debbie says. 

“Now is the time to really consider all of the information that is out there: all of the reports, all of the stories that are about people and people’s lives, and to drive the improvement that is really needed. 

“I think it is clear about what people need, and what needs to be changed, but it starts with that real valuing of individual people. 

“There is a lot of commitment to make this change, but what we need is a real willingness from all of our leaders, to actually acknowledge that there is no point doing the same thing that we have done in all of these years.”

The CQC has been clear about what needs to change, and yet the same failures continue.

The result is people with learning disabilities and autism have a much lower life expectancy.

No parent wants to bury their child, and yet something that I have heard in the course of this investigation has truly shocked me.

Many parents of children with learning disabilities and autism will reluctantly admit they actually hope their child dies before they do. 

That’s right: they hope that’s what happens.

So bad is the care in our society for people with these needs, these parents are terrified their loved one will end up locked away in one of these secure institutions with nobody left to fight for them, and no way out.

It doesn’t get much more damning about the state of care for the most vulnerable people in our society than that.