Men at work: Day 105

LB went to the farm yesterday for the first time in weeks. He’s timetabled to go every Monday and Friday but has consistently refused. Even though he always enjoys it when he’s there and works hard.

Apparently he’s been interested in the decorators, carpet fitters and electricians who’ve been working at the unit for the last few weeks. Yesterday it was turn of the gardeners.

“You hear that sound LB?”, asked his support worker.
“Yes,” said LB.
“What is it?”
“No, it’s the sound of men at work.”

And that was it. Bowl of porridge (or two) and off to work. Beautifully done.


Wordgames and DoLs

I got a call yesterday evening, after visiting LB. Awkward, awkward, awkward. The ensuing discussion erased any memory of the guy’s name or credentials but he’d been in to assess LB that afternoon to decide whether he was being deprived of his liberty or restricted in his movements.


He was surprised and shocked we knew nothing of this visit especially as he knew we were going to visit LB shortly after his visit.


His assessment involved conversations with LB and two staff members, and his conclusion was;

  • LB is restricted but not deprived of his liberty because he isn’t trying to abscond when out of the unit, is offered regular options to leave the unit on outings (which he regularly turns down) and hasn’t said he wants to leave. Although he did tell the guy he didn’t want to be there. Conclusion: apart from the locked door, there is nothing stopping him leaving.  


He wanted to know what I thought about this.

Wordgames. That’s what I thought about it. Wordgames, spin and nonsense.

“No, maybe”. And ‘adulthood’

More struggles over adulthood, rights and capacity… though I’m really trying. Honestly.

LB was due to go to the farm yesterday. Taken straight from the unit, bypassing school, to work with Sue and his classmates. When he was told to get ready, he didn’t look keen so he was asked if he wanted to go. “No, maybe” was the answer. There followed a hilarious conversation where he was asked various questions about whether he liked the farm and what he wanted to do, with a lot of “no, maybe” answers. It was finally established that he didn’t want to go to the farm and would prefer to go for a second choice; a drive and a long walk. His teacher was called and she asked to speak to him (love her). He didn’t budge. He later made it clear he didn’t want to do the drive/walk option either and stayed in his room. Whose idea was it to give this dude choices???

I’ve heard a lot of stories like this to do with learning disabled people making choices (usually from parents). It’s a tough one. I know, I KNOW, I KNOW that people should be able to make decisions about what they want to do. But LB will always choose to stay in his room hanging out “self occcupying” if he’s given that choice.

I think my struggle is around two overlapping things;

    1. LB isn’t making a decision in a vacuum; the choices offered, the way in which they’re presented in terms of the language used and the way it’s structured, the relationship between LB and the choice offerer, the implications of the decision made for that person, LB (and others) all feed into a complex set of interactions that can mean that the choice isn’t really a choice at all.
    2. There is a constraining kind of meta-level control always present which means that, ultimately, LB can only really decide what he’s allowed to decide. If he makes a decision that isn’t perceived to be in his best interests, the swat mental capacity team come in and stop him from making that decision.

So it’s a heavily managed and mediated, complex, uneven ‘choice’ space. I don’t know what the answer is really.  And I can’t see him ever emptying the dishwasher again.

The egg of trust and the GP

LB had an appointment with the GP after school today. He’d had a liver function test to check out the medication for his newly diagnosed epilepsy.  The doc said that there was a bit of a problem because the blood level showed that the drug was at a level that suggested it wasn’t being effective.  Instead of a level (of something but no idea what) of between 40-80, LB’s blood showed 25.

The options were to up the dose to a level at which it was effective, continue the dose (but it wouldn’t be achieving anything) or stop the dose because, as it wasn’t working and he hadn’t had a seizure for three months, he didn’t need it. It was up to me to decide.

Whoa. Hit me with the first example of non paternalistic decision making I’ve ever experienced when the stakes are so high, why don’t you?!  The potential of tonic clonic seizures or even stronger medication with hideous long term side effects.

I got the doc to talk me through it all again, and once it became clear that upping the medication was only really treating the medication, as opposed to preventing seizures, I decided to keep the dose as it is until we met with the neurologist again.  I’m a bit suspicious of stats at the best time and didn’t really buy the 25/40-80 stuff. So the outcome of my first patient weighted decision making; defer the decision.

So home, kettle on, dig out school diary to find out the latest happenings in the sixth form.

“LB has been brilliant today. He has an egg to look after as part of our work on trust and bring back tomorrow hopefully in one piece”.

“Wow! An egg of trust? LB! Where’s your egg matey?”

“In the bin.”

“What? Whaddaya mean???”

“It’s in the bin, mum.”

And it was. Crushed. Barely retrievable.

“Why did you chuck the egg away, LB?”

“Cos I’m ANGRY WITH THE SCHOOL. They wouldn’t let me do what I wanted to do”, he fumed.

“Yeah, well sometimes you have to do what you’re told, matey”, I said, putting on a pan of water to boil a new egg of trust.  “And sometimes you  wish you were told what to do…”