Oh dear. Think I’d better apologise about my growing obsession with the framing, positioning and overlap of pitches, people and stuff at the weekly market. 
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Monthly Archives: April 2013
The Unit. Day 30
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 Apparently LB was withdrawn, not very communicative and didn’t want me to visit.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.
Gender in Cornmarket
The Unit. Day 28
Sleepless night, worrying about the end of Section 2. Then a last minute meeting at the unit this morning with LB’s head teacher, teacher, Vicki (a Charlie’s Angel), and unit team members to discuss his return to school. Bit of a rocky start to school return yesterday. He was taken to the primary site (as far as we can tell) and refused to get out of the car. “I’m confused”, he said.
Team LB Ed were impressive throughout the meeting. I was bemused by the vigorous writing down of the descriptions they provided of LB’s decline into “CRISIS” (beginning to seriously hate this term) when I’d already told so many professionals about this, but hey ho. Engagement at any level is engagement. It was also a reminder of how dire things had got.
The gap between education and health was palpable but also manageable with flexibility and a shared concern for LB. Plans were made for him to be supported to return to Trax and the farm with unit staff accompanying him. Sensible, informed engagement. Good. The ending of Section 2 was discussed. This would be discharged (?) today with an anticipation that he would agree to stay as an informal patient. If he wanted to come home, the mental capacity team would be called in. A further section unlikely because he’s currently a chill pill.
‘Er, can we be told whether he’s an informal patient or issued (?) with a DoLS (deprivation of liberty safeguard)?’ Oh yes. Action point; keep parents informed. No words.
The meeting finished with a new Team LB Ed/Health (Yowsers) and a general love-in about how much better LB had become over the last month. It was genuinely heartwarming and sealed with a cheeky smile from LB when we left. “Tsk”, I said to head teacher, as she had a weep outside the unit, “The crying days are over, we’re moving on to better places”.
Later that afternoon I got a call from the unit. LB wanted to know if I was going to visit tomorrow. “Eh???? Really??? Yes of course I will. I can come now if he wants?” I hadn’t arranged to visit this afternoon because I saw him before and after the meeting this morning. After a quick check I was told, yes, LB wanted me to visit today.
Five minutes later I was driving in the sunshine, humming to the radio, loving stupidly the fact that LB was actually asking to see me.
As soon as I saw him I kind of recognised but ignored the signs. I gave him the photos of the forensic police investigating Rosie’s break-in. “YOU LIAR!!!“, he shouted, raging. And, instantly, we were back to four weeks ago.
I don’t know what’s happened since I left him there, around 6pm. I rang later and was told he was still very, very agitated. I read into that; possible restraint? Medication? Harm to staff? Almost definitely no Trax tomorrow if medicated? A Section 3???? I don’t know.
And LB in deep, deep distress.
Now, I don’t know, they don’t know and maybe (as often is the case) we’ll never know, why he got so distressed so suddenly. I’m sure it’s to do with the fact they had to inform him of his rights and the ‘discharge’? of the section. It’s the only thing that’s changed between this morning’s chill bear dude and this afternoon. I don’t know what was said to him about this discharge from section? (Is it a set statement that’s read out, or a more measured interpretation that he might understand?) I think he thought he was coming home when I turned up tonight. What else could account for him asking if I was going to visit, and his immediate distress when I did.
He can’t possibly understand the complexities of the Mental Capacity Act or the Mental Health Act (as is the case for a lot of people including me). To expose him to either in a “thinking” capacity is cruel and unnecessary. Especially as he doesn’t really have a choice about staying or leaving. The system is seriously flawed.
28 days later.
Back at the top of the bus
The end of Section 2
So, it’s the early hours of day 28. The end of Section 2. (I don’t know the language/ways in which we should be talking about this, so apologies if I’m being crass.) LB’s now been detained for 28 days.
I’m awake, worrying, agitating. I know, through a kind of detective work and realisation of strategic positioning, that LB isn’t going to come home tomorrow. But I don’t know that for sure. Here’s what we have to go on;
- It’s unlikely he’ll be sectioned tomorrow because he’s chilled out.
- The mental capacity team (who are???) are likely to decide he lacks capacity to return home. Apparently they were going to pitch up this afternoon.
WHO ARE THEY?????? - No one has been in touch with us to discuss him coming home.
No one? Like who???
This uncertainty is so upsetting, distressing and wearing. So outside of what you’d expect to experience within mainstream health experiences (I hope).
There is a bizarre, almost sleight of hand thing that seems to be going on;
LB is an adult, so back off and let him decide what he wants, you pushy, good for nothing parent, you…
… er,we’ve reached a bit of an impasse, can we just call you in for a quick discussion about x/y/z to do with LB?
We’ve pootled along for 18 years, bringing up LB with his brothers and sister. Suddenly he’s been given additional powers to make decisions about his life, when a) his sibs discuss their big life decisions with us and b) he doesn’t necessarily have the ability/competence to make those decisions. Why is he given a special pass to decision-making that the other’s aren’t? Why is the starting point with dudes like LB that the intention of parents, carers of learning disabled people are somehow suspicious?
I don’t know the mental capacity team who are assessing whether or not LB is able to make the decision to stay in the unit. From what I’ve read, this team should include a family member; maybe my comments about his capacity in two team meetings count towards this assessment. I don’t know. I don’t expect that many of them are awake right now, thinking about this. Worrying about this. Thinking about LB. I know that none of them know him like we do. That’s what I really don’t understand.
The top of the bus
Got to sit at the front on the top of the bus today. What a treat. Watching the morning commute in action. Through slightly steamy windows.
Whose best interest?
Coasting at the moment on the delight of having LB back to his old self. We really did descend into a hideous space over the past few months and, in the maelstrom that created, lost sight of the funny old dude he always was. I love the unit. (Rich keeps pulling me up on this. He says my bar is set so low, in terms of expectations of support, that I’m calling something good, brilliant. Ha! In some respects I don’t care. It’s fucking brilliant in my book. And I love it).
What I can’t quite get my head around, is this adult rights stuff. LB may, or may not be returning to school tomorrow. We don’t know. We don’t need to know (arguably). He’s an adult. His section 2 finishes on Tuesday. This was discussed at the team meeting last Monday; mental health, mental capacity and his right to choose to come home. We’ve openly said, and said to LB, that we think he’ll benefit from staying longer in the unit. He’s a bit hesitant on this, but not dismissing the idea. There seemed to be some agreement on this at the meeting. When he was admitted he “wasn’t right” (to quote someone whose known him a long time). In the last month, he’s been removed from any stress (other than being somewhere he didn’t want to be at the beginning) and hung out in an environment that’s comfortable, warm, clean, friendly, with good food, constant attention (or space to withdraw from attention) from people who seem genuinely caring and thoughtful. With family and friends close enough to visit on a daily basis. The contrast between everyday life and this unit are huge. The return to school, while staying at the unit, is a way of assessing how he manages life outside that space and, hopefully, offering him help with dealing with the bits of life he finds hard.
So, Tuesday. As far as I understand it, it’s unlikely he’ll be sectioned again (way too much of a chill bear for that now), and there is some hope he’ll voluntarily choose to stay in the unit for a bit longer. But when read his rights, and it’s made clear to him that he’s no longer detained, he may decide he wants to come home. The only way then to keep him in the unit is if a team (made up of all sorts of people including a family member as far as I can tell, though we’ve not heard anything further) decide he doesn’t have the capacity to make this particular decision and it’s in his best interests to assign? apply? smack him with? a deprivation of liberty safeguard (DoLS). [Sorry, I’m woefully unsure of the language/way in which these things are articulated]. When I think back to a train journey home from a disability studies conference last Autumn with a colleague who was leading a study on DoLS and trying to explain to me what they were, I’m reminded of the speed at which LB deteriorated.
I’ve absorbed the gist of DoLS through this leaflet produced by the Department of Health easy read information. Not an easy read emotionally. I’ve been worrying about Tuesday. At many levels. From the enormous – wishing/willing your child to be deprived of his/her liberty is pretty horrendous – to the basic practicalities; would we get a call to come and collect him by 7pm at the latest (I dreamt this situation the other night)? And if yes, what would happen if he started to deteriorate again?
Then, at a meeting on Friday about our experiences of the last couple of months, a health/social care manager said in passing that the community team would have been in touch to start discussions around LB’s care plan for his return home. Eh? Wha? The ‘community team’? What’s that? The Care Manager? Someone else? These questions underline how crap adult services are. Or how I shouldn’t expect to work full time, as the mother of a learning disabled young person and, instead, take the time to fully investigate these mysteries.
But nah. No one’s been in touch about that (community team or anyone else ‘official’). Leaving the meeting, I gradually felt a sense of release. Not relief. We’re not going to have LB home without a proper care plan in place. We’re not going back to that place. We want him to come home. Can’t wait for him to come home with effective support in place. Support that’s supportive. And I don’t think that’s going to be sorted out for 7pm, Tuesday evening.
The Unit. Day 25
LB was well and truly back to his old self today. We could hear him chuckling away to himself as soon as we went in the unit. Tasty cottage pie smells, a Yellow Pages to leaf through, Al Murray on his DVD player and a jug full of squash in his room. His day was rocking. He bounced off to get Rosie and I drink, then we hung out answering his questions about the break-in at Rosie’s student house. Burglars, forensic police, finger printing and offloading an Xbox on the black market. The stuff of dreams for LB.
When we went to leave, I asked him if he wanted me to bring him anything in particular tomorrow. Silence.
“Hey, LB, say now if you want Mum to bring anything tomorrow, while you’ve got the chance.”
“Now now now now now NOW!!!“
The Unit: The beginning
I’ve just been reading old posts in preparation for a meeting with the learning disability service manager this morning and realise there was a jump from Charlie’s Angel’s taking LB to town on that Tuesday morning to him being sectioned that night.
Just briefly, to fill in that gap;
The trip to town on the bus went ok but LB became agitated after his Subway sandwich and they came back quite early. I was at work later that day when a mate rang and told me about a mental health/learning disability treatment unit she’d been told about, very locally, that should admit LB on an informal basis because he was a danger to himself or others. She gave me the number to ring to set the process in place. And a second number to ring to follow up, if he wasn’t admitted within an hour or so.
Sitting on the bus home, holding the scrap of paper with the two numbers scribbled on it was indescribably awful. As was the rest of the day. And the days that followed.
Funny really, looking back. These numbers obviously gave us access to tap into a tried and tested process. After a very short space of time, we had a consultant sitting at the kitchen table. Bizarre really as we had been shouting for help with zip all effect up to that point. But hey ho, until you know what you really need to know, you don’t really know anything in the weird world of learning disability support.
The consultant talked with LB first on his own, and then went though a load of questions with us. There were some tensities, shall we say. Rich nearly exploded when he suggested organising outreach workers to come in each day to check on LB instead of admitting him. Things had got beyond outreach in a big way. And we had little confidence in whether ‘outreach’ would materialise. Eventually, after nearly two hours, and a call to his line manager, it was agreed that LB should be admitted.
The consultant left saying he would call when ‘the bed’ was ready. Tom had his judo grading. Rich dropped him off and told him to walk round the corner to his grandparents after and wait for us to collect him. I got together some pyjamas, clean clothes, wash stuff and sat with LB who seemed quite excited. He loves the whole hospital/institution thing; uniforms, wards, processes, order.
We got the call and set off for the unit.
“Where are we going?” said LB as we turned away from the local hospital. We explained it was a different hospital and then, five minutes later, arrived at a neat two storey building on the site of the learning disability team. Right by the psychiatrist’s office. ‘Five minutes from home’, you say? Next to the psychiatrist’s office??? Yep. Knowledge eh? It’s a vicious beast when you don’t have it.
There was a brief blip and slight tensities as we weren’t expected and waited at the door trying to establish our credentials. Rich asked, again through gritted teeth; “You get a lot of people turning up randomly to try and get their children admitted, do you?”
We waited in the living room while the official approval to admit LB was received and then unpacked his bits in his new room. We left pretty much straight away and went to pick up Tom. He got his blue belt.
mydaftlife 