Tag Archives: choice

The Unit. Day 59

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LB went to the farm today. Under duress but with effective encouragement. His face lit up when he saw his teachers apparently.

He was lazing in the living room, surrounded by his transport magazines when we turned up this evening. He showed us his scrap metal notebook. After the list of items he’ll need to set up a scrap metal depot, he’d drawn a picture of a lorry on each page and labelled them ‘scrap metal lorry’.

Towards the end of the book, there was a picture of two men with guns pointed at each other, labelled ‘Dirty Harry’.

“Wow. Have you seen Dirty Harry LB?’
“Yes.”
“You must tell Grandad, he likes Dirty Harry.”
“Yes.”
“Whose the other man in the picture?”
“Dirty Barry.”

Wordgames and DoLs

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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.

Eh???

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.

Eh???

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.

Choice, Bond and bus tickets

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Rang the Unit this morning to see if LB wanted to come to town with us and have some nosh out. He’d been to the farm on Friday and had been quite chilled over the weekend.

“Maybe. Maybe not,” was the answer. This means no. I rang back a bit later to see if he wanted us to get him anything.

“No, thank you,” he said to the staff member relaying the question.

“Can you ask him if he wants a t-shirt or a dvd, or anything?”

The answer was “DVD please.”

Rich, Tom and I went into town. Tom started chatting about when we’d gone to watch Skyfall with LB. I’d forgotten, but Tom remembered how LB had sat patiently in the dark waiting for the bright daylight fight scenes so he could read his bus ticket. Hilarious. Kind of.

There’s something here about choice and constraint. But also about difference and tensions around making sense of our lives and the social world we live in. I still think of LB as an unlikely ethnographer, but that doesn’t help us understand how he makes sense of his life. This remains a mystery really.

ryan5-264

The Unit. Day 42

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The excitement of the trip to the bus museum had worn off by the time we visited yesterday evening. LB was in his room, subdued, having chosen not to go to the farm (again).

Choice eh? Very, very important that learning disabled people can make these choices, we’re told. Unlike many other people, who have no choices in their everyday lives. Yeah, it’s so much better that LB is able to choose to laze about in his bedroom all day (again), than get a good day’s exercise, sunshine, fresh air, hang out with different people and be productive. My arse.

Of course loads of people would choose the room-laze option over working. But they wouldn’t be given that choice on a daily basis. They’d have to (if they could) do something productive. And more than likely want to after a few days.

I’m getting pretty naffed off with this choice charade as you can probably tell.

Anyway. Back to yesterday evening.  LB’s bedroom was snug and comfy, with the evening sun shining in. He sat leafing through his Yellow Pages, with bus magazines spread across the floor. Jug of squash on the desk. It was calm and peaceful.

“Do you like it here, LB?” Asked Rich.

“Not really, no”, he replied, without looking up.

“No, maybe”. And ‘adulthood’

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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.

Limits and horse-shite

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Well the light hearted, fun chit chat involving LB and his unusual take on the world, that partly inspired this blog, seems pretty distant now. I’m glad I captured some of it on these pages. It’s currently masked by reasonably regular extremes of behaviour that are unpredictable, aggressive and deeply upsetting. The trouble is, there isn’t any real (effective, valid, meaningful) support to deal with this.

I got a call at the beginning of a meeting in Manchester on Monday, after a Mother’s Day that included, in equal measure, horror and lovely, lovely love stuff. LB had had a serious meltdown? crisis? situation? at school. It sounded awful and his teachers and the school nurse were understandably shocked and upset by it. I could only say, standing in the corridor, trying not to cry with the futility of the situation, ‘I don’t know what to do’.

Cripes. Well who does know? Who should know?

Er, health professionals? Highly trained specialists who have the relevant knowledge to help LB and guide us through this.

No. Not really.

Trouble is, they won’t say that.There is a faux professionalism that involves sticking to a script that is irrelevant. Without that script there is nothing. LB’s unusual behaviour challenges, tests or confounds the boundaries of their knowledge. And this, in turn, is complicated by the resources available. This is not a comfortable situation for anyone, so we go through the motions in a performative way. Questions asked. Answers given. And they (pick your health professional) ease out of our home. No further forward. No change.

Tomorrow it’s the turn of the (learning disability service) psychologist, who was passed the baton by the (learning disability service) psychiatrist (who did nothing). Our GP embraced her contribution this afternoon in an obviously appalling situation.  I promised to be open-minded when I meet her.

“Can you prescribe something like a horse tranquilliser as well, maybe with a dart gun, for those particularly tricky moments?” I asked. “No,” he coughed, “this can’t be resolved through medication. LB needs help to learn strategies to manage his behaviour, aggression and anxiety. That is the role of the psychologist.”

“Ah, okeydokes,” I said, leaving his office, with my promise taking a hammering.

Choice and autonomy my arse

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At the moment our lives are becoming increasingly [hahahaha] complicated as LB has become very anxious and distressed. We’re in a big old hot pot, dealing with support and services underpinned [big fanfare] by the gov’s personalisation agenda. Key principles; Choice and autonomy.

Well this sounds like the baby. Choice and autonomy.. lovely, lovely, lovely. Let’s have a little looky at how this is shaping up eight weeks on;

Social Services. After a complete meltdown that resulted in LB out of school for a couple of weeks, the Care Manager acted instantly to organise a wedge of emergency direct payments for us to buy care. Good. We can choose what type of emergency support we want. Unfortunately, the kind of people who may be willing and able to hang out with a 6ft tall, young man who may, or may not become aggressive, are not that much in supply (and hugely in demand). So in practice, not so good. The alternative is the Respite Centre with the snooker table. Complete fail. CM also offered to organise a round table meeting. Good. And, after a particularly alarming incident (Episode A), has given me an emergency number to call. Good. Unfortunately, if we call that number we are opening a window for LB to potentially be sectioned. ‘Mmm. Well I’m sure they will do what’s best for him in that situation‘…I hear you think. Not really. ‘What’s best for him’ relies on what’s best for him being available. Not a mental health unit over a hundred miles away in Norwich where two of his class mates have spent months. There is no in-county support for young learning disabled people. That is a complete fail.

Health. The GP instantly prescribed anti-depressants over the phone without hesistation. Good (in the sense he took our concerns seriously, not that LB is now on more medication). After LB mumbled something about suicide near some professional type person, he was whizzled into a same day appointment with a psychiatrist. Good. (Well a bit weird that the concerns we have are largely ignored but one word gets instant attention). The psychiatrist asking LB if he felt suicidal was a complete fail. Never, ever put ideas into that boy’s head like that. She then, after a telephone appointment 6 weeks later, discharged him. Not so good. ‘Why are you discharging him?????’ I asked, seconds after I’d told her about Episode A. ‘He was referred to me because of the concern about suicide, now that is no longer a concern, the psychologist will help him to manage his anxiety.’ Not so good [and given our experience with psychologists over the years (star charts anyone?) suspect this detour will be a complete fail].

So what are we left with? Money to pay for care. No care to buy. And no one doing anything to help LB become less anxious.

Choice and autonomy? Feels a teeny bit flaky to me. Can we have some action?

‘That letter’ and non-standard mothering

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So here’s the gig. LB is 18. Increasingly unhappy at school. Deteriorating in emotional well-being. The space for him to be happy seems to be steadily narrowing. Like those rooms on Tomb Raider with moving walls, or the ledge Batman stands on.

We work full time. Luckily with flexible employees/jobs that allow Rich to leave work at 1pm to collect LB from a residential school trip in Devon when it goes tits up, or one of us to be home at 3.15pm most of the week, with some help from family. This also means that we spend quite a lot of the weekend working.

We have a care manager. Or we did, briefly, until she organised the 2 hours of direct payments five days a week to cover after school ‘adult child care’ and discharged us indefinitely. ‘Successful at panel*’, she called it. Trouble is, ‘adult child care’ ain’t readily available. And two hours after school doesn’t solve the increasing problem LB has coping with school.

Things are not going well.

I met with a good friend this week who has a 25 year old daughter in a residential setting. She always amuses me with her refreshing, no nonsense, cut through bullshit, type approach to her and her daughter’s social care experiences (which have been up and down). This time she turned her focus onto LB. It was time to write ‘that letter’, she said, as we noshed on the early evening menu and glugged house white.

If we didn’t write ‘that letter’ to social services, saying we wanted LB to live independently when he finished school in summer 2014, he would get lost from the system. We needed to have ‘that letter’ on file. So it’s recorded. We didn’t want to be scrabbling around in crisis, in five years time, desperately trying to engage with social services and no space to be given any choice in his living arrangements.

This week I’m a respondent at a workshop on ‘Changing Models of Motherhood’. The session is about ‘non standard mothering’. I’m uncomfortable with that term for all sorts of reasons. I want to call it ‘different’, ‘hindered’, ‘frustrated’, ‘hampered’, ‘unsupported’ mothering. ‘Non standard’ implies a benign, though less valued, type mothering but one that is somehow still within the gift of the mother/child relationship.

LB’s current distress relates to external factors and is compounded (or created) by a lack of appropriate, timely, responsive rather than reactive support. I don’t want to write ‘that letter’. For me, it goes against what I consider to be ‘good mothering’, non standard or whatever. It seems harsh, punishing, unfair and I worry it will expel him to some, as yet unknown, space. A kind of containment.  Experiences of social care so far have been pretty mediocre to downright crap. For example, the council funded sessions of peer buddying to take LB out and about, and the care agency sent a man in his fifties because there were no other staff available. I know that the rhetoric around choice and personalisation is hollow. There ain’t a meaningful choice.

So, writing ‘that letter’ fills me with dread. I know its got to be done. But I still don’t know why it does. It shouldn’t be this crap.

*And I still don’t know what ‘panel’ is.

Patient choice? My arse

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Ding dong time this afternoon with the Practice Manager (PM) of our GP surgery. They’ve introduced a crackpot system where you can no longer book an appointment with a GP. You have to arrange for a GP to call you back that day to assess your need for an appointment. It’s all in the name of patient centred care and choice.

So I had a 30 minute call with PM  who’d swallowed the health policy rhetoric manual but could not explain why I couldn’t make an appointment without a screening call. The gig was that I could agree to a GP call-back and potentially get an appointment the same day, or I could be allocated a loser slot, out of hours on a Tuesday night or Saturday morning.

In response to the (numerous) concerns I raised, she tried to persuade me that GPs were so flexible in this new system that call-back could be arranged to coincide with tea-breaks for people at work who didn’t want to discuss symptoms in front of colleagues, and that an online option existed so patients could type their concerns quietly. No reflection on how unrealistic or burdensome this was.

Yes, in some contexts of course it’s fab to have the option of managing some health related issues by phone. I howled for that when a GP rigidly insisted on ‘seeing’ LB in the surgery before re-referring him to neurology after he’d spent a night in A&E recovering from a massive seizure. But not a blanket screening system. That’s just crap.

Eventually, she suggested making an out of hours appointment in 2034. I told her I’d just crawl off into a corner and quietly die. She didn’t budge. It was screening call or crappo appointment. That was the system. I said I should probably contact the local paper about it. She booked me an ‘in hours’ appointment in a few days with my GP.

So, this new system is also going to feed into and reinforce health inequalities highlighted by, and remaining/increasing, since the Black Report. Fucking great.

Beyond shunned, trust and what?

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LB’s now been back from his five day PGL adventure for three days. And all we know is that he was ‘shunned’ by the boy he shared a room with, he went abseiling and ate chips. He says he had a good time. He says his room mate scared him. He says he had to sleep with the light off, which also scares him. He says he doesn’t want to go again. But then he didn’t want to go in the first place.

Oh, and I also know there was a ‘staff change’ on the Saturday in the middle of the trip.

This was LB’s first ‘adult’ holiday. It was organised by a care provider company who seem to have a good reputation. As I wrote earlier, there was no choice involved. We haven’t been shown any evidence of the ‘quality’ of this company (or any other company for that matter). The local authority obviously use this company but that don’t mean diddly squat. The company has glossy brochures. A bouncy, cheerful worker does home visits and gets the forms signed. A cheerful woman picked him up and dropped him off. There is a cracking performance of bright, breezy and cheerful. But what do we really know? There’s that screaming question; Why should we trust you?

Maybe I’m being overly protective. Maybe LB went off, had a great time and loved every minute. I hope so, but that’s not the point. It just ain’t good enough. I know, historically, learning disabled people have had a crap deal, but the current context of Winterbourne, the crapheap that is the CQC, the increase in hate crime against disabled people, and so on, is hugely concerning. LB, like many other dudes like him, is vulnerable. He doesn’t have a malicious bone in his body, is loyal, loving and great company. But he doesn’t have any resources to defend himself.

I don’t like this discourse of ‘care providers’ when profit is often be the motivating factor in their operation. What ‘care’ are they providing? Are they ‘caring’ or is it more about containment? I have no personal issue with the particular company that was involved in this holiday. I have a broader issue with the way in which LB has already taken his first step into adult (almost) services and already the foundation of lack of information, choice and control is laid.

Oh, and a ‘staff change’ during a five day holiday with a group of young people like LB, in my book, is a complete fucking no no.