Saturday, 25 May 2019

Panorama & Beyond: Treatment of Vulnerable People in Care Homes & ATUs.

In the UK, the BBC Panorama team investigated a secure care setting.  In it, various autistic people, and people with learning disabilities.  They had sent in a 'secret care worker' who had recording equipment.  She noted a culture of appalling abuse of the people living there.  Humiliation, violence, inappropriate use of restraints.  Not just from one or two members of staff, but a whole culture. gives some more background.

On the wall of one of the rooms, inspiring words were written.  The picture above, taken from the documentary, shows some of them.  Safe, Respect, Fun, Choice, Meaningful, Person-centred.  Accountable.

Great words.  But entirely not what was happening.

Care homes are inspected by a organisation called the CQC.  is one of their reports on the centre.  One of the findings from the inspection team. Between November and January  - at most three months - there had been 92 'reasons' for restraining one particular person.  Averaged, that's pretty much every single day, whichever way we look at it.  Restraint is terrifying, overwhelming, painful.  It can take days to recover from.

The inspection team were told by the manager that this was normal for patients with complex needs.



As well as being an international level and qualified autism professional.  I spent many years working as a specialist in anti-domestic-violence work.  I co-wrote national policy for organisations.  I worked with the Mayor of London's teams.  I was a Trustee of one of the major regional charities, with day to day responsibility for the safety of domestic abuse victims.  Some of the cases I was involved in were ones where we were at the Royal Courts of Justice, so working with Barristers in the top Courts in the land to ensure that cases were heard and case law changed.  There were countless hours spent listening to victims explaining how very plausible abusive people are.  How no-one would believe them, because of their abusers' plausibility.  How they would be portrayed as unstable, as needing 'support', as needing whatever-happened-to them.  How any attempt to speak out would be met with punishment.  How saying nice things about their abusers was the only way to survive, the only way to stay safe. 

If someone has the keys to your bedroom and the right to do anything they like to you and call it 'care', you have no true voice.  None.  If the people around you do not know how to interpret autistic language and behaviour, what little voice you have is silenced utterly.

That dynamic is the one that allows some care homes and ATUs to become places of fear, tyranny and hell for the most vulnerable in our society.

I want to be clear that some care homes are fabulous, and some staff are fabulous.  Many are just ordinary, and doing a good-enough job.  That's fine.  Many good people doing what they do well, despite budgetary pressures and staffing pressures.

But some are places like Whorlton Hall, and inspection teams seemingly haven't a clue what they are looking at.

That worries me.  I'm part of inspection teams from another organisation that  'troubleshoots' care in some such centres.   I see some of the complex cases, and get to meet a lot of the fantastic autistic people and people with learning disabilities who are in such settings.

And I see some who are deeply afraid of their carers.  So afraid that they daren't say. Their fear is palpable, but people are busy listening to the plausible-charming-abusive-carer, who tells them that the autistic person is the Real Danger, really needs that abusive treatment.... in fact, it's prescribed by their Psychiatrist.  Glad to work with investigative teams that see right through it.

There is no reason to restrain people unless it is an absolutely dire emergency and there is no other way to safeguarding that person or those around them.  If someone is having to be restrained every day, that is a very clear safeguarding situation that should have triggered immediate investigation and complete review of environment, staff, medication or any other factors.  

In the decades of working with autistic people I have never had to restrain someone.  Not a boast. A reality of knowing how not to trigger brain events.  And a reality of being genuinely delighted to meet them and very respectful of their space and possessions, aware of the culture and communication of autistic people.  When to back off, when to be especially careful about the overloading effect of even-accidental eye contact.  Speaking gently and slowly, from genuine honour at being in their presence.  So many in such centres meet the diagnostic criteria for PTSD, according to the specialist, and thus a gentle, cheerful, well-explained, consensual low-trauma approach is absolutely vital wherever humanly possible.

There is also no reason to hold people effectively prisoner in environments that are entirely unsuitable for autistic people.  Noisy, chaotic, lit by flickering hellish fluorescent lighting that can trigger 'meltdown' brain events time after time for some autistic people.  These are the worst environments imaginable for recovery and wellbeing, even without adding abusive staff.  Above is a photo that may help explain sensory overload in some environments, for some autistic people.

So, what do we make of the inspectors from the CQC being told that it was all perfectly normal and believing that  - despite apparent multiple whistleblowing reports around concerns?

I suspect that the CQC could benefit greatly from core training around:

1) Autism.  A modern understanding.  Here is your reading list. It is a brain difference, not a mental health condition, not a cause of 'naturally violent behaviour'.  Many of those with learning disabilities are also autistic, some undiagnosed.

2) Domestic abuse.  A clear understanding of how abusive people can be the most plausible people in the world. Really nice, really charming.  An explanation for everything.  "Of course it's normal to do this to autistic people or those with learning disabilities.  It's what they need.  It's normal for them to be in meltdown all the time.  It's normal....honest it it..." No, it's not.  It's distress behaviour, or a brain event after being put into intolerable social and sensory hell.

3)  Embedding autistic people and highly specialist teams properly in the review process, up to and including at the highest level.

I contacted the CQC to ask if our international team could be of assistance to help with the current situation after the Panorama programme.  They offered me a chance to apply for a part time low paid job going into care homes. 

I'll leave you to think about what that means.  I found it both amusing on a personal level, and one of the most concerning things I've ever received.

I don't need the work.  I do need autistic people to be cared for safely.  This is a strategic matter, a matter involving a profound error around autism and autistic people, it would appear.

That could have been my own child in that centre, being held on the floor by jeering staff for half an hour whilst they handed round gum and applied psychological torture.  That could have been my own child terrified in her bedroom, with a huge bloke blocking the doorway, taunting her over and over, with her screaming in fear.

That could have been your child. 

I would strongly recommend that these 'treatment centres' are closed.  My voice adds to those in Government and charities who have been calling for this for a very long time.
I hear too much of, "But these people wouldn't be safe anywhere else - there is nowhere for them to go."

They are not safe in those centres.  They are not recovering in those centres.  They are not thriving in those centres.  There is no sign of those centres being closed, as per reports and recommendations.  The breathtaking money spent on those centres and the alleged-care and alleged-therapy (mmm, no) could easily be spent on individualised care and support in peaceful, gentle surroundings near to home and community.  A bit of thought would do it.  And goodness me, we have enough specialist knowledge available to achieve it.  We're not even trying to engage with that help and support.  Instead, we're holding 'consultations' over and over.  What on earth for?

I remain deeply concerned about the political and financial power of a particular 'therapy'.  When some of their teams can be paid £500,000-plus per resident per year to apply this mysterious 'therapy', there is one heck of a reason to keep those centres going, isn't there.  The core 'therapy' doesn't even work, but commissioners are told it does, and that apparently is what matters.  It's a racket, in my view.  One costing lives.  One certainly leading to a negative view of vulnerable people as a set of 'behaviours', not as people of integrity, love, caring, gifts.  These are individuals who are genuinely different and in need of teams around them to respect them and support them, rather than critique and control all day with a view to normalising them.  We need to put the Positive back into lives, and the Support back in, for sure.  We're a very long way from that, with some of the alleged-therapies bearing those words.  I've blogged on PBS and what it's too-often becoming.  Those concerns remain.

I've been very fortunate over the last years to have found so many highly professional, respectful and caring colleagues and contacts in the caring and medical professions.  I share their concern about all we see in such documentaries.

Working together with them is what makes a difference.

Let's do that.  Because our most vulnerable deserve a life where they can be their authentic selves, in settings that enable them to flourish.

Thank you for reading.