“Finding him something to do…”

It was LB’s community team meeting at lunchtime today. He’d refused the farm so talk turned to finding him something to do instead of school. My brain nearly melted.

How can we be in this position of “finding him something to do“? Not just him. Any young learning disabled person? How can we be talking in these terms? Where’s the aspiration? The opportunities?  Ironically of course, giving LB choice is an effective way of erasing aspiration from his life; he will choose to stay in bed, watch DVDs and eat loads of cake.

I walked back from the meeting, head reeling. I’d mentioned that we have given thought to LB’s longer term plans (of course), we have got a folder full of residential college brochures that the county council will never fund, we know that local college provision is crap, and that leaves, er, direct payments. Which is where we started.

How can provision be this crap?

Well the walk to the unit kind of (but not really) sheds some light on that question. A 25 minute walk through a local estate to the ring road where the site is. I thought, funnily enough along the way, how this location reflects the status of learning disabled people in society. How much learning disability provision is located on the margins, at the edges of towns and cities? Winterbourne View was on an industrial estate. Leominster day centre is literally next to the dump.

A very recent indication of this status is evident in the endless discussion and jokes in the media, and social media, about the ‘swivel eyed loon’ comment, with barely any reflection on the offensiveness of this comment. It’s almost as if people don’t see it…. because really, and maybe subconsciously, they don’t see learning disabled people as fully human. 

I got home and had an email from the Care Manager. I’d chased her up this morning about arranging a meeting to talk about LB’s future plans. She’d emailed me a couple of months ago to say that when someone is about to leave the unit, they have a Care Plan Approach (CPA) meeting to discuss what is going to happen.

Her email said it was being held on June 10th. In less than three weeks time.

Turned out the invitation had been emailed to various professionals last week with a note at the bottom saying:

Please let me know if anyone else should be invited to this meeting.

No words. Just tears of frustration and rage and despair.

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.

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;

        1. It’s unlikely he’ll be sectioned tomorrow because he’s chilled out.
        2. 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??????
        3. 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.

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. Day 14

I spoke to the psychiatrist this morning and got a proper update at last. LB has been much calmer since the first week, is undergoing continuous assessment and they are hoping to adjust his environment, rather than change him, to reduce the triggers to his aggression and anxiety. They are planning for him to return to school (for his non-school based week) after Easter and are hoping that he will agree to stay at the Unit, informally, at the end of this section in a couple of weeks time. The core ingredient during this time will be information gathering, past and present, from his family, school and the unit team.

What.a.relief. That sounds a sensible plan. And she sounded lovely.

Ten minutes later, Rich asked if I’d looked at the photography book I’d got for Mother’s Day.

“Eh? What book??” I said, looking over at the shelf he was looking at. WOW!! I’d completely forgotten about it. Mother’s Day was obliterated this year, as I’d scuttled up to Manchester early to get away from a raging LB. A long nine days before he was admitted. “Fab! O.M.G. What day is it????”
“April 3rd. Wednesday.”
OMG!!  I’ve got my hot rock massage today at 10.30!!!! Gotta scoot.”
“So today’s all about you is it Mum?” chipped in Rosie, ‘working’ (Candy *cough* Crush) at the kitchen table.
“Yep, bloody right it is.”

The Unit. Day 12

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 5

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.”

The Unit. Day 4

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

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.