‘Autistic children are routinely restrained and drugged in Care’ - The Times on 18th May 2019

‘Autistic children are routinely restrained and drugged in Care’

A case study from an article in The Times on 18^th May 2019

‘Bethany….. has autism and suffers from extreme anxiety.  She was kept in seclusion for 21 months at St Andrew’s Hospital in Northampton, locked in a room with only a mattress and chair, and was given meals through a hatch in a metal door.  Staff at the psychiatric hospital which is run as a healthcare charity facing sustained criticism over the high pay of former executives, said she was aggressive and self-harmed’.

Now apparently, according to the Times (18/05/19), a CQC report has been commissioned by Matt Hancock (the current Health Secretary) after ‘revelations of abuse in mental health institutions seven years after the Winterbourne View Care home scandal’. This report is expected to ‘reveal wide spread and regular use of “inhumane” techniques to control both adult and child patients’.  The report will also highlight ‘the failure of health officials to create care plans that would allow children to live at home’ (although I do wonder why CQC had to be specifically asked to do this ... why weren't they sufficiently on the ball to do it anyway?). Former Care Minister, Norman Lamb, has apparently described the situation as an ‘on going scandal … serious child abuse is endemic in the system!’

I have to say that I am not in the least surprised.  As part of the Transforming Care initiative I was (for a short while) involved in a very similar care i.e. a case of the continuous solitary confinement of an individual in a privately run special hospital (he was also routinely fed through a hatch in the door); it was heart-breaking to see.  At the time (which didn’t last long as the funding for my involvement was time-limited and soon ran out) it did occur to me that there is a perverse incentive in the current system of funding i.e. it pays such private companies (and charities with apparently very highly paid executives) to have people remain in such conditions (despite these services having beautifully and presumably expensively created websites that claim the very best service values and practices).

Indeed at the time I did think that the severely challenging behaviours exhibited by people in such “inhumane” conditions must, to some degree, be reinforced by such conditions of powerlessness and futility, if not actually exacerbated due to a downward reactive spiral of negative 'behavioural' consequences and brutalising control in such ‘modern day asylums’ (as Dan Scorer of Mencap has described them) … and as also seen in last night’s BBC Panorama programme about Whorlton Hall specialist hospital.

Remember, it is 7 years since the Winterbourne View scandal (when 6 care staff were jailed - but none of the highly paid executives), but despite ‘speeches, policy documents, steering groups and delivery groups’, the system continues to fail those we have a societal obligation to properly care for, and to care about.

It makes me wonder just what the people in charge of CQC have being doing?

Why isn’t sufficient regard given by those in positions of power to promoting the consistent use of positive means to develop sociability, rapport and trusting relationships within these apparently 'special' services for children and adults? ... in the adult Learning Disability ATU here in Leeds Intensive Interaction is now routinely used with a range of our service users to clearly positive effect. 

And why does it take the media informed by whistle-blowers (and not CQC) to again show us that ‘the callous clearly remains mundane in some parts of the health system’?

Using Intensive Interaction with those who present within 'a broad spectrum of demand avoidance'.

At a recent Intensive Interaction Forum meeting held here in Leeds, we discussed:

'Using Intensive Interaction with service users who present with some level of demand avoidance'.

Emerging from this discussion were some issues that I thought might be useful for others (health professionals, teachers, parents, carers, etc) to consider when working with, or caring for, people (i.e. adults and children) who present with some level of demand avoidance (i.e. not just at a diagnosed ‘pathological' level).

The sections below are taken from the minutes of our Forum meeting:

Pathological Demand Avoidance (PDA) is an increasingly diagnosed neuro-developmental condition, coming under the ASD heading. However we (the Intensive Interaction forum attendees) generally thought that we had worked with a range of service users who fitted somewhere along a 'broad spectrum of demand avoidance’ (rather than it just presenting at some diagnostically labelled ‘pathological' level). This spectrum of demand avoidance was described as differing widely in its form and severity, depending on the characteristics of the individual service users. 

We then addressed 3 aspects of working with people who present with some degree of demand avoidance: 
1. Why might demand avoidance occur for some service users?  
2. How might demand avoidance be presented? 
(and 3. How might Intensive Interaction help ameliorate the impact of demand avoidance for such service users? - but I will cover this in another, later Blog). 

So:

1.  Why might someone be (or become) demand avoidant?

• Anxiety, including social anxiety.

• Fear of the unknown, and a wish to avoid uncertainty.

• Fear of failure, getting something wrong, or disappointing others.

• Needing to control a situation, so therefore being unwilling to be controlled by another.

• Not fully understanding a demand, this then leading to anxiety about their ability to complete the demand.

• Previous negative experiences or trauma.

• Lack of positive interaction and /or socially supportive feedback.

• Low confidence or self-esteem and/or negative self-worth or self-view.

• Lack of social skills.

• Neuro-developmental issues (incl. an official P.D.A. diagnosis).

• Not being interested in the current activity being offered (i.e. not actually being demand avoidant).

2.    How might a service user’s demand avoidance be presented?

• Responding negatively to every day requests (not just ‘challenging’ things).

• Verbally declining (“no thanks”) or refusing (“NO!”) tasks that the person has the ability to do, or even actually likes doing.

• Ignoring or not responding to requests or the presentation of an activity.

• Changing the topic or closing down a conversation e.g. “it’s okay luv”, “Not just now”.

• Giving apologies before not doing something.

• Creating a distraction away from any given demand.

• Hiding offers of activities e.g. destroying letters, leaflets or invites etc.

• Responding negatively to positive comments or even to any praise given by others.

• Social withdrawal e.g. shutting eyes, avoiding eye contact.

• Physical isolation e.g. staying in bed, staying in a room, not going out.

• Physical withdrawal e.g. leaving the room, turning their back, etc.

• Physically pushing people away, out of their space.

• Failing to choose between some offered positive choices.

• Having a ‘Melt-down’ and/or causing environment damage.

So I suppose the question I should now ask others who weren't at our meeting is:

Do the above points ring true? ...are they accurate? ... are they sufficient? 

Is there more to add on these two aspects of working to support those with demand avoidance? (before we think about how Intensive Interaction might help such people?)

Please let me know your thoughts ...

p.s.This year's Intensive Interaction Weekend Workshop in October will be looking at these issues in more detail ... for further information on this professional development event, or if want an application form, please email me at: graham.firth@nhs.net