Tag Archives: mental health

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.

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The Unit. Day 45

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From yesterday. Bit-post. Unfinished through lack of words:

LB attacked a staff member at dinner time tonight. Unexpectedly. For no apparent reason. After some careful but excessive sauce action (tomato and brown) on his plate. This lead to restraint, more restraint and medication. The situation was explained to me carefully in detail when I turned up an hour or so later. 

“Er, can you claim for your shirt?” I asked his key nurse, inanely, after my other questions were answered (but left unanswered because there aren’t answers). 

There are also no words really to make any sense of this, without falling back on jargon and social care speak. 

I saw LB briefly after the debrief (and ripped shirt). He was in his room. I was armed with an alarm. He didn’t say much, just muttered really. I rang later that evening to see how he was, and the support worker (love her) went upstairs to check on him.

“LB, your mum’s on the phone. She just wants to know that you’re ok.”
“Yes.”
“Can I get you a drink or anything?”
“Yes.”
“What would you like?”
“Blackcurrant.”

 

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.

The Unit. Day 40

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Day 40: The day we took LB to the bus museum

Got a call from the Unit yesterday asking if we wanted to take LB to the nearby bus museum that he loves. TAKE HIM?? Pick him up and take him ourselves?? That’s a ‘Y.E.S. We’d love to‘ kind of answer. It wasn’t open yesterday, and he declined our offer to take him somewhere else instead, but today Rich, Tom, Owen and I scooted round, picked him up and headed for the museum. It was great. The museum’s very quirky with a lot of very shiny old buses. We sat in various buses and coaches, chatting, remembering visits to museums and holidays from years ago. The outing was rounded off with sausage rolls and ice-creams in the cafe. Fun and fab.

“By the way, Margaret Thatcher died”, said Tom, as we pulled up back at the Unit.

“Why?” asked LB.

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Throwing ‘money’ at a ‘problem’

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I’ll say it again.  I just don’t get the workings of the Mental Capacity Act in practice.  It just seems obfuscation* gone out for a night on the tequila to me. Out of necessity. I kind of understand the thinking behind direct payments (DP) though. Enabling/empowering people to buy in appropriate support/assistance (without having to rely on local authority provided support that can be constraining/limiting/inappropriate and sometimes patronising).

The early signs for me that DP were a bit flaky appeared at a series of meetings with some colleagues a year or so ago, in which an anecdote circulated involving a someone who chose to use his/her DP on Reiki sessions. This caused raised eyebrows. I didn’t understand why. If the Reiki made a difference to that person’s life, what was the problem? So what if there’s no evidence base to support the use of Reiki? It was probably more, or at least as, effective as a ‘turn in’ service involving a 10 minute visit from a carer at 6pm to get someone ready for bed. When they weren’t ready for bed.

Of course, some sharpish regular blog readers will be hopping up and down by now, hands up in the air to interject; BUT THAT’S WHAT LB’S DOING IN CHOOSING NOT TO GO TO THE FARM!!  Erm.. No. Not exactly. Let’s not drag LB’s choice-making into this particular discussion for now, eh?

So. DP. A good thing. In principle. If people are allowed (or able) to buy in the support/assistance/services they need. And there lies the problem.

We chose to have direct payments, I don’t know how far back. It was such tiny amounts at first, it covered a session at after school club each week for a couple of years. And then when LB turned 18, it increased to just about cover about 5 after school club sessions a week. At almost the same time, things deteriorated to the point that he could no longer go to after school club.

Cripes. What to do? Pay for an assistant to cover the time instead using DP? Yep. Way to go. This was our November time thinking. But the aggressive behaviour increased, inversely affecting the (small) pool of potential ‘assistants’/assistance we could draw on. On an almost weekly basis we crossed potential and actual past carers off a tiny list of possible support. This was sad in itself given some were young people who’d known LB since he was a pup.

The Christmas “CRISIS” and events of the weeks after left an empty list. At the same time, the Care Manager increased the amount of DP paid into the ghost account. Within an impressively quick turnaround.

Ironically, while the original intention, for us, to plump for direct payments, was to be able to organise everyday ‘ordinary’ support for LB (ie. support not drenched in learning logs, private care provider-ville, and agency crap), his ‘decline’ meant that all we could hope to arrange was the ‘official’ type care, and that takes time to put in place. One of several care providers I contacted during this period, eventually replied weeks after my original email to say;

  • This is potentially support we could provide. I do not have enough support staff to accommodate this currently, but we could recruit specifically for this purpose. Our hourly cost is £14.47/ hour. Would you like to discuss this further?

I replied to say that LB had actually been sectioned in the interim and she sent a reply about how advertising for the right person might take time and did I know when we would want the support to commence. No words. As usual.

This is where the problem lies. In Social Care Towers, it must have appeared that our particular case (one of many) was under control. A wedgey of money had been flung at it. In practice, Rich and I were cobbling together working at home, rearranging/cancelling meetings and making do. This is a privileged position which we both recognise. But not without costs and risks. And limits.

What I’ve learned is; throwing money, in the form of direct payments, at a ‘problem’, is not a solution. Money doesn’t equate to ‘support’. Money is only ‘money’ when there’s something it can be exchanged for. And really that something should be meaningful, effective and consistent. Direct payments shouldn’t equate to a ‘get out’/ ‘ignore’ clause for effective social care provision and attention.

*Gotta ‘fess up to googling the spelling of this.. it basically means (deliberately?) making understanding difficult.

 

The Unit. Day 37

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Day 37: The day that Tom and LB get to meet in the local Burger King for tea.

Tom and I got there first, after a speedy dive into Tesco. Tom wanted to get LB a DVD or magazine because it was their first meeting since this all kicked off. He chose him some undercover cop comedy film I’d never heard of. And I grabbed a big box of cornflakes on special offer as we’d run out of cereal.

We sat at a table by the window, scanning the car park, half watching the families coming in and out. Chatting about the Suarez 10 match ban. It was odd. Waiting for LB to turn up. We had a bit of a chuckle thinking the staff would wonder what we were doing in a fast food restaurant, not ordering anything.

It was also weird wondering what it must look like to anyone there (who noticed) seeing a car pull up in the car park, LB get out and join us, and the driver going back to wait in the car.  Like an inside out version of prisoner visiting hours. Or some court supervised visitation. Being in a familiar setting, but in a context in which the parameters are radically altered, is very strange. At one level we were hanging out like we’ve done a million times before. At another, this was like a state supervised meeting.

It was also fab.

Tom and LB went to sit down while I ordered a load of nosh. Lovely to see them sitting down together, hanging out. Unconfined. We ate, they had puds and chatted. About Hot Fuzz, Tom’s mate who said to say ‘hello’ to LB and local police activity in the neighbourhood on Friday evening.  LB was delighted with the DVD. He’d also been to the bus museum again today, which he loves.

When everything was eaten and we’d chucked the rubbish away, I asked LB if he wanted to go back to the car or hang out a bit longer.

“Hang out a bit longer, Mum,” he said.

So we did. He carefully removed the cellophane cover from the DVD, peeled off the stickers advertising different things, passed the rubbish to Tom and read the back of the box.

Then we walked him back to his waiting car.

A good outing.

‘Incarceration’ on a sunny day

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I’ve been trying (and failing) to make some sense of this experience. It’s too enormous. And on a sunny day like today, ‘incarceration’ is all the more painful. Of course LB isn’t ‘incarcerated’, he’s an informal patient who, in theory, can move around as he chooses. In practice, this isn’t really the case. (Although spending the day in his room watching Eddie Stobart DVDs is probably something he’d choose to do).

I was kind of delighted to read on twitter, this morning, that one of the priorities of the Care Quality Commission (CQC) is to strengthen its focus on mental health, mental capacity and learning disability. That delight was almost instantly quashed by the ‘Yeah. What. Effer’ demons. The past 16 or so years since LB was diagnosed with ________________ [fill in the current label/s depending on the year/decade/century/version of the DSM (Diagnostic and Statistical Manual of Mental Disorders). Use an extra page if necessary], nothing has really changed. The kind of things we (a group of parents of young children) tried to change in health and social care all those years ago, are being fought by a new group of parents of young children. Having just emailed LB’s care manager this evening to ask her to stop any more direct payments (DP) and take back what’s been paid into the DP bank account (above the surplus that has already been demanded back by the DP team), in order to avoid paying a fair charge for no support at all, makes me wonder if things have almost got worse in some ways.

It’s a tricky one really. The extreme situation we’ve experienced over the past few months has pushed us into some horrible spaces. The almost daily developments – good, bad and indifferent – in the various areas that revolve around being the mother of a learning disabled young man informally living at a mental health unit, are time consuming, sometimes baffling and emotional exhausting.

I’ve read, researched, written about and lived the experience of mothering a learning disabled child. This adult stuff is a whole new ballgame. One we’ve barely had a chance to absorb and think about clearly. In the same way there was never any (useful) guidance, support or advice about having a disabled child, there has been no useful guidance, support or advice about having a learning disabled adult son with mental health issues (I don’t like this phrase but dunno what’s an acceptable alternative).

This has been hard. But hey ho. The sun was shining today. There’s good stuff going on. Charlie’s Angels are fighting the fight. Rich and I are both blown away by the support and warm wishes consistently offered by family, friends, neighbours, colleagues and all sorts of other people. Some guy raved about my grey hair at the bus stop this evening. And Chunky Stan’s eye pressure in his remaining eye is pretty much back to normal. 

And we’ve arranged to meet LB in Burger King tomorrow evening with Tom. They’ve not seen each other for five weeks. Funny times.

“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.

The Unit. Day 30

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Rich visited LB yesterday. Apparently LB was withdrawn, not very communicative and didn’t want me to visit. He said I should ring the unit today. I rang this evening on the bus home from work. Blimey. He wanted me to visit.

I jumped in the car as soon as I got home and whizzled round there. He was OK. Been in his room all day (after a good day at Trax on yesterday), quiet and a bit subdued. The nurse came in with a plastic kidney shaped dish with a cup of water and pot of pills. Funny because you forget it’s a hospital really. LB carefully drank the full cup of water, put the cup back on the tray then picked up the pills to swallow. Love him.

So, as far as we know, he’s a voluntary patient. He’s going to the farm tomorrow with Sue and his class. And hopefully getting back to the chill pill he was on Monday morning. That’s pretty good really.