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Units of Currency

July 22, 2013

Alicia Woods wrote a fantastic article for Community Care today. It was prompted by the terrible death of LB in a bath at an NHS assessment & treatment unit. As well as posing the question, how the fuck could something like that happen, Alicia also tackled the question – what the fuck was LB doing there in the first place.

It’s a massive question. What is the point of these units? Who do they serve? Is there any reliable, independent evidence that they have any useful purpose?

It was clear to me from Steven’s year in the unit that many many people’s jobs were tied up in the place. Nothing to do whether the place is successful in terms of outcomes for the “patients” – the unit seemed to exist to keep an incredible number of people in work. And there has to be a regular stream of people going through the unit to demonstrate its worth to the CQC. The “patients” in the unit are irrelevant; their main purpose being a source of someone’s salary and pension.

I’d guess that most of the people at the positive behaviour unit that Steven was held in were somewhere along the autism spectrum. It is an “assessment and treatment unit”. Can autism be treated? In our case, this led to enormous problems. In order to shoehorn him into the unit’s model of “treatment”, Steven’s autism was denied. As the independent psychologist wrote in his report: “minimal attention was given to Steven’s autism”.

But this is based on the assumption that “treatment” is actually taking place in these units. Or more to the point, the person needs to be there in the first place. I cannot find any evidence that “treatment” is being provided. From my experience, and from the anecdotal evidence I have heard, these units are not about treatment – they are containers. And very useful containers if the support system is so shite that nothing else is available. In our court judgement, the social worker is said to have recorded on 14/12/09 that there was a problem at home. Nothing happened. The next paragraph said that the Unit manager discussed alternative Christmas activities on 29/12/09 – a full fortnight later. Additional temporary support a lot earlier would have been very welcome. Did Steven get moved to the unit because 16 days after a problem arose, the professionals felt there was still a problem? Or was it because one of the patients in the unit was due to move on imminently and the LA couldn’t afford an inspection of its “important resource” with only two very long term residents in it. Who knows?

Where is the evidence that these units are more successful in providing treatment than in the person’s home? To answer that, you have to go along with the potentially flawed conceit that the person needs “treatment”. Who says so? Oh, the Unit says so. That’s alright then.

In Steven’s case, and I think in LB’s case, what was needed was home support during a difficult period. The trouble is support costs money – “treatment” brings in money.

And once you’re in a unit, you become trapped in a web of deceit that the unit is actually benefiting the person. Once again, no real evidence that I can see, but if the unit exists, it must have a value. For the deceit to work, the family has to be sidelined. You cannot have people who love and really care for the “patient” suggesting that the King’s New Clothes is alive and kicking in 2013. Instead, you are screwed by meaningful innovations like “choice” and “treatment plans”. Sara Ryan wrote during LB’s time in the unit that he had a chart in his bedroom, that LB completed to track his emotional literacy. For four days running, it had sad faces on it. I want to commit unspeakable acts on anyone who thinks that was a good thing – a useful “treatment tool”.

Thank you Alicia. Sometimes I feel like screaming from the rooftops that these units are a putrid con trick with our loved ones used as the driver for the con. Hopefully, Alicia has started a debate that is meaningful and will blast apart the myth that treatment units/positive behaviour units have a purpose for our sons and daughters.

There does seem to be some evidence that something happens to our young autistic guys, sometime during puberty. Is it medical? Is it social? In Steven’s case, he seemed gripped in a fear about his future after school. All the routines of the previous 14 years gone. What on earth dos the future hold? What is being an adult all about? Totally understandable anxieties – snatched on by the state to boost its revenue stream.

Truly this issue warrants a great big safeguarding investigation about the people claiming to be acting in our children’s best interests.

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From → Social Care

7 Comments
  1. Tracy Neil permalink

    I absolutely agree with you, Mark. Even though I have no relatives with autism, I’ve seen elderly care homes and can only imagine that ‘treatment’ units are similar. Plus, surely anyone with half a brain could see that someone who relies on routine and familiarity would be best supported in their own home??

  2. It will be the same old story of a cover up – And the last sentence in the report will read “we have learnt from this incident”….. a penny for every time I’ve heard this……of course it’s a lie – they never learn – because they don’t want to………..

    It will happen over and over again until we the parents stand up and fight shoulder to shoulder – we give them the think they hate most adverse publicity…..we shout long and hard – you can’t do this and get away with it………….

    In my opinion one word sums up LB death – MANSLAUGHTER………..

    Solidarity…..

  3. Zara permalink

    forgive me, I’m not trying to challenge this at all but I’ve just been sat here at staring at this for 5 mins trying to work out how these units ‘bring in money’ as you say? I’m sure they do – I just can’t work it out.

  4. Otter permalink

    How on earth can a system which denies access to everyday life pretend to be “treating” or “preparing” individuals to live fuller everyday lives. As an autistic person the concept of units absolutely terrifies me, to be removed from my life, my routines, my independence and job and have all my responsibilities and commitments taken away so I can be studied as a guinea pig (which is where the money is coming from its state funded research) to prove some macabre false theory. I can’t think of anything worse. It is torture. Unbearable torture, how many more deaths have occurred?

  5. Just want to highlight your comment that what is needed is home support during a difficult period.

    Some years ago, as he hit puberty, my son (who has an autism spectrum diagnosis and specific learning difficulties) went through a very difficult time that led to him spending three years as a weekly boarder in a very expensive specialist school. During the time preceding this placement, we were in constant contact with both social workers and CAMHS (not just the local clinician, but weekly visits from the level 3/4 unit). Our assessment of what was needed, at least initially, was respite and support managing and understanding our son’s behaviour. Although lip service was paid to this, what we needed was not available. The only ‘solution’ was that if things got completely out of hand, we should call the police!

    Although there is no way of proving things could have been different, if more appropriate home support had been available, I still think that appropriate support and respite might have enabled my son to stay in mainstream schooling living at home. Instead public money went into school fees and a weekly taxi journeys to a school 130 miles from where we live.

    Fortunately, the outcome for my son was positive and he is now living independently and studying for a foundation degree, but things could have gone wrong in so many different ways.

    Whatever else, there is a need for a radical rethinking of the support offered to young people – and their families – when crises occur.

  6. Weary Mother permalink

    Weary Mum

    There is a paradox here. If I could write a blog like this I would title it ‘Who do you think you are?’. Most of us parents can describe being treated and too often dismissed as just ‘carers and or ‘clients’, for we are non people. Who DO we think we are? We parents are either too over protective, too inexperienced, or just not qualified enough etc etc to know our son or daughter. . The jargon is just a device to keep us in our place, on the outside. My son is middle aged and has Downs, he has a serious speech disability and other stuff, but we know each other and we speak to and understand each other; we are just like the rest of the population outside this ‘club’. I have couple of degrees, but my son makes more sense of the world than me; he is a lot wiser and less angry than me. The paradox is that while we ‘clients’ and ‘carers’ are seen in this way, the same ‘club’ of paid people cannot justify passing on the health, happiness and safety of the most vulnerable people, to the cheapest, least experienced, least knowledgeable, and least qualified people. Just, who Do they think they are?

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