Monthly Archives: March 2013

The Unit. Day 12

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After a visit on Friday in which LB was bright, engaged and active, the weekend has been about sedation. How much and how often, we have no idea. We can only go on what we see when we visit. Yesterday, drowsy, laying in bed, looking lost, LB asked when he was coming home. And said little else. Today he didn’t say anything. He lay in bed, blinking and looking blank.

Incarceration, a lack of professional attention because of the ‘holiday weekend’, and a continuing information black-out for his family. I’m not sure how we’ll respond when we next get told about  his ‘rights’.

This ain’t right.

The Unit. Day 10

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Things have been calm for the last few days. LB’s had daily visits from various people; family, Charlie’s Angels, and friends. Not Tom or Chunky Stan sadly, neither of whom are allowed in (too young or too furry). The staff ask him in advance if he wants to see people and, so far, has said yes to everyone. The cakes have remained in good supply as well as truck/bus magazines, and other treats.

Yesterday afternoon he was lying on his bed, very quiet, after a loud all-night kick off situation that stopped him sleeping. Today it was aunties visiting; Tracey and Sam. We found him in the living room chuckling at Carry on the Revolution. When it finished, he showed T and S round and was quite chatty. They, like most people were surprised (and pleased) that he wasn’t locked in a room, and was able to wander around the unit as he liked. There are lots of very good things like this, including staff and patients eating meals together (if they want to). When we left, LB came with us down the corridor, knocked on the office door and got someone to let us out. Comfortable in the space. And chilled.

I’ve started to re-read Goffman’s Asylums, which takes me back to my undergraduate days. As I’ve banged on about before, I have a total love-in with Goffman’s brilliance. It feels kind of comforting to think of the G-man hanging out in ‘closed communities’, and to reflect on the differences between what he describes and LB’s unit. Differences that partly came about through his work. What a dude.

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The £20 note and the Queen

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Got on the bus this morning with a £20 note. And no change. Not a good move.

The driver shook his head. “No change.”

“Arghhhh.. sorry, I haven’t got anything smaller.”
“No change,” he said, poking at his change drawer.

The guy behind me was jingling some coins.

“Can I get the change in town, when you’ve taken some cash?”
“Doubt it. I’ve got no change so far. The best I can do is a change receipt.”
“Ooh, Ok.. What do I do with that?”
“Take it to our depot in Outer Mongolia.” (teeny bit of embellishment there..)
“Isn’t there somewhere  a bit closer to do that?”
“Gloucester Green.”
“Oh, Ok. I’ll do that. But if you’ve got the change when I get off, can I cash it in with you?”
“No. I wouldn’t have any cash left if I did that.”
“Well you ain’t got any now..”

Shrug.

“Ok, I’ll take the receipt. Thanks.”

Fifteen minutes I looked up from Candy Crush. The bus had stopped, not at a bus stop.

Eh? I looked out the window. Where are we? Dunno, but everyone was piling off the bus. Speaking to the driver in turn.

“What’s going on?” I asked when it was my turn.

“Detour. High Street’s shut. The Queen’s coming.”

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Strange times.

Keeping mum, irony and shifting capacity

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It’s a tricky one, this capacity business and parenting. I deeply believe that capacity should be presumed and agree (and welcome) that “unwise or eccentric decisions don’t themselves prove lack of capacity”. I also worry that this has led to instances in which the wellbeing of learning disabled adults is compromised because “capacity” is so difficult to demonstrate in practice.

There was a roundtable discussion about Winterbourne yesterday with a range of learning disabled people (I assume/hope there were learning disabled people present), families, community groups, government ministers, policy makers and service providers. This was live tweeted by various people (see #winterbourne to follow the discussion). Families cropped up early in the discussion and there seemed to be a call to involve families rather than treat them as a problem.

winterbourneImportant, much needed discussion, but I was struck by the irony of going to visit LB with the threat of him deciding he no longer wants to see me, hanging over my head. It is quite a blast to go from being the full time carers, with very, very little support over 18 years to suddenly being removed from the equation. We have to ask for any snippet of information. The outcomes of a team meeting on Monday remain unknown to us. Again, ironically, in an attempt to not appear a batty, desperately protective mother, I didn’t ask to attend this first meeting. When the default position is the young person has capacity (without capacity being tested), the positioning of family members within the structure of the mental health service is a bit anomalous. And anomalies are odd and out of place.

Fran came round yesterday afternoon, armed with useful information from a brilliant workshop she’d been to on capacity. It was run by Luke Clements, who is an expert in this area. “He was absolutely brilliant”, she said. “Ah, him? I updated the literature review for his disabled children and the law book a few years ago. My supervisor was the co-author.” Is that ironic? I’m not sure. My research at that time was about mothers and going out in public with dudes like LB. The real irony is that LB can’t go out anymore. And my role as a mother is now contested.

The Unit. Day 6

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Crawled back to bed this morning, exhausted, and was kind of slumbering when the phone rang. It was Vicki, LB’s teacher. Charlie’s Angels were going to visit him this afternoon and she’d just had a call from a nurse at the unit. Could they talk about LB returning to school?

WOW. WOW. WOW. That.is.amazing. Back to school????

The highs and lows of the last few weeks are indescribable. Three sections in as many minutes and now back to school??? Fanbloodytastic.  Vicki told the nurse a bit about LB when he was Laughing boy, before he became withdrawn, distressed and eventually aggressive. They’re going to discuss a return to school after Easter.

I rang the nurse. They’d had the team meeting yesterday, done their baseline assessment over the past five days and will now start to get to the root of the problem. In the meantime the team think he needs to get active again, rather lying around all day.

I’m beginning to seriously love that unit.

Time for me to crack on with work now. I’ve got some cakes to bake later. And a load of other stuff to catch up with. Happier times indeedy.

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March 2012. In place of this year’s daffs.

The Unit. Day 5

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LB seemed a bit odd when we visited. A mix of unusually cheerful and slightly different mannerisms. He was in his room where he spends his time when he’s not in the bath. His eyes seemed small and his face a bit puffy. I suppose he’s coming up to the best part of a week now without daylight or any exercise.

Rich tidied his room up while I drew him an Irish lorry from County Mayo.

“Where’s County Mayo Mum?”
“I dunno whereabouts it is. Hey, let’s look at the map K brought you and see.”

Silence.

“Where’s your map, LB?”
“I threw it away Mum.”
“Eh??? Why did you throw it away?!”
“I threw it away Mum.”
“Oh. Did it get torn or something?”
“Yes Mum, it got torn.”

Smithy’s father and the large German bear

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Tom was chatting this morning about the graphic novel he and LB had produced a while back. LB was the story teller, Tom the illustrator. LB called it Pointbreaker as he’d just read Point Blank and Stormbreaker. Tom and Owen dug it out this afternoon.  Brilliantly random. “Stop, I’ll shoot you like a large german bear”. The names on the gravestones are hilarious; William Blake, John Kelly (Busker John) and Smithy’s father (from Gavin and Stacy)…

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The Unit. Day 4

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After feeling strangely heartened by the reminder that LB had rights, I began to reflect on what this meant in practice.  Who would/should safeguard those rights? He said no to an advocate when he was sectioned, but he doesn’t really know what an advocate is. He’s been in the unit for four days now with rotating staff. What they know about LB you could write on a postage stamp. We’ve hung out with the dude for 18 years and loved the socks off him. If anyone has his best interests at heart, I’d say we probably coast it. I get the arguments about the constraints and limitations parents (particularly mothers ‘cough cough’) can place on disabled kids through an overly developed sense of protection. But I also know how vulnerable these dudes are.

We rang the unit at lunchtime to see how he was. The  phone was passed straight to LB. I just wanted to know if he was OK and having a grunt from him wasn’t really going to answer that. I had a quick chat (not really the right word for a largely one-sided conversation) and asked him to pass the phone back to the nurse.

“We’ll visit this afternoon around 4ish if that’s OK. His sister will be back from university. We’ll ring before we come.”

“Great.”

Later that afternoon I rang. The phone was dead. Oh. Luckily, I’d been given a second unofficial number by someone who recognised how distressing this was for families. That number was eventually answered and with some resistance (all of a sudden bedtime routines happened straight after dinner thereby interfering with visiting hours), we were able to visit.

LB was in his room and seemed pleased with his cakes and bus magazines. We hung out for a bit, and, when we left saw some of the other patients. As usual, they were chilled and said hello.

We haven’t seen any other visitors all week. Despite the extensive visiting hours pinned on the front door, there are no visitor type concessions, like a vending machine, or waiting area. I don’t know if there is an assumption that people won’t visit or that visitors will cause disruption. Or maybe the other patients have exercised their rights and refused visitors. From the interactions I’ve had with them over the last few days, I find that unlikely. It seems desperately sad if there ain’t any. But I can kind of see how it could happen.

The Unit. Day 3

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Went to visit LB this morning, after Sue and Tina called round in the mini bus with LB’s classmates. They’d brought a lovely card and flowers. Hilariously the kids pretty much ignored me but waved like crazy at Chunky Stan. LB was in the bath when I arrived, so I hung out in the lounge playing Candy Crush. It wasn’t so much about seeing him as knowing he was OK, letting him know I was around and, for me, being in the same space as him.

Various staff members stopped to chat and the other dudes hung out too. It was enormously peaceful. The odd offer of a drink. Lunchtime came and went, a communal eating of beans on toast. Some laughter and a sense of familiarity.

A staff member (JK) we hadn’t met before pitched up. He mentioned that LB’s dad had phoned the evening before but LB had said no to sharing his health information with him.

Screeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeching brakes.

Whaaaaaaaaa????????

Oh yes. LB had the right to say no. He also had the right to say no to visitors. We should ring so the staff can ask if he wants to see us. Ehhhhhhh??? He’ll never say yes to seeing me???? I make him fill the dishwasher????? The room started to spin a bit as the extremes to which this could be taken to started to sink in. JK said that if LB wanted to appeal against his section, they would support him. Oh boy. LB with rights. That was kind of hilarious. He is going to LOVE this. We talked through this a bit more, JK talking about various past experiences with patients. The room stopped spinning.

I left after 2 hours without seeing LB. He knew I was there but chose to stay in the bath. I rang the unit later to see how he was.

“He’s been fine all afternoon, totally absorbed in his map of Ireland that K gave him. He’s been tracing road routes along it.”
“That’s brilliant. I spoke to JK earlier about seeing if LB wanted to see us, which we’ll do in future. I just wanted to say thanks for letting me hang out so much there this week. It’s been so important to get a real feel for the place, see how everyone interacts and so on. I am so impressed by what I’ve seen.”
“That’s great and no problem at all,” J replied cheerfully. “We’re here to support the families as well as the patients.”

I’m off to have a piece of coffee cake now. And wait to be served the court documents.