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.

Pap street, pop stars and the guitar guy

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Wandering around town earlier, with Rich. Camera in hand. Sun shining.
“Anticipation“, I said, cheerfully. “That’s one of the things I learnt on the street photography course.”
“Mmmmm“, said Rich. Most likely boredy bored with the whole street photography thing. “There’s some big cameras over there look“, he said, pointing towards three men standing together and staring down Cornmarket.
“Oh yeah,” I said, snapping some long haired guy with a violin and his girlfriend. Totally oblivious to the unfolding drama.
“Something’s going on. They’re looking for someone. Look.”
“Eh? Who?”
“Those men with the big cameras….”
And they were. Paparazzi. In Oxford?  A huge Chinese pop star apparently. Though I didn’t see him.  We did catch up with guitar guy on the way back though. Circles of time and place, and all that.

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“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.

Reflections, symmetry and happenings

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Came out of Charing Cross tube this morning to drenched streets and dazzling sunshine. Whoa. Must have completely missed a downpour. So pleased I was early enough for a cheeky little detour in Trafalgar Square before my meeting started. Nearly four hours later, the streets were dry and the sun had disappeared. But there were still interesting happenings. And the splendour of Paddington station to catch the train home. From platform 9.

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Market life (2)

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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.  ryan5-218 ryan5-217 ryan5-215

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.

The Unit. Day 28

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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.