Tag Archives: support

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.”

 

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.

Whose best interest?

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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: The beginning

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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.

Imagination and recognition

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Rosie was off to see a mate last night. We found out recently that this mate’s dad was the sleep guy who discharged LB from his sleep study all those years ago when it became apparent LB was not going to respond to the study interventions.

“Hey! Can you ask P to let his dad know that LB’s now sectioned, and that he’s part of the collective of health and social care professionals who did zip all for him…? Cheers“, I quipped. Though of course it ain’t funny.

Accountability? I can’t bear to work out the cost of the combined salaries and hours and hours of meetings with H/SC profs [too numerous to remember each and everyone of them] over the years, but for LB to end up sectioned a few months after turning 18, suggests these interactions were largely pointless. Other than sustaining some pretty weighty salaries in some cases, I can’t think of any productive help these meetings generated that couldn’t have been suggested by anyone with a bit of common sense. And LB ain’t alone.  We know of four of his (slightly younger) peers who have been sent out of county in the past 18 months.

It’s as much about recognition as accountability. Recognition that ‘expertise’ in this area is often limited in effect. This is never acknowledged but it would be a lot easier to manage if it was.  With this recognition, we could have saved all that time travelling to, and in, meetings, and muddled along (as we did anyway). This could have been underpinned by the reassurance that if things took a turn for the worse, there is a very local nifty little mental health/learning disability unit. A unit that will take LB in and give him some proper attention.

Mmmm. Slight problem here is that the unit is not widely known about. We found out through a friend of a friend. The profs couldn’t even deliver at the point of crisis. I still can’t quite get my head around the fact that this unit is based about 50 metres from the office of the psychiatrist who discharged him days before he was sectioned.  And that a few weeks earlier, on February 6th, I sent the following email to his Care Manager;

Hi [CM],

Is there a number I should ring in a crisis? [LB] is at home (as it’s Wednesday) and he’s been quite threatening to me and himself.

Thanks,

Sara

The research group I work for focuses on understanding, using and improving people’s experiences of health and social care. I’ve always hoped that this blog offers an insight into what it’s like to be the parent of a disabled child and negotiate the challenges and obstacles created largely by the lack of effective support, services and general attitudes towards difference. I never imagined the direction it would take though.

Right now, in the space that’s left by LB’s removal (which I’m experiencing as a mix of peaceful relaxation and sporadic gut-wrenching memories that are winding in their intensity), I’m struck by the ongoing crapness of H/SC. While LB is being very well cared for in the unit, we haven’t heard a sniff from anyone other than Oxon County Council demanding back contributions of £500 towards LB’s care. Despite some fairly tense phone calls about this (based on the fairly straightforward point that he ain’t had any care, and we just have a unusable glut of direct payments in a bank account), a week or so ago, the letters keep arriving.

I rang the Fairer Charging  [I know] office again to ask them to stop sending these reminders.

“Oh, yes, I can see a note on the file, saying this is being looked into.”
“Yes, so could you stop sending any reminders about it?”
“I can’t do that. These letters are automatically generated.”
Spontaneously? With no human involvement in their generation? LISTEN.TO.WHAT. YOU’RE.SAYING. 
“Well that ain’t good enough.”
“There’s nothing I can do about it. I suggest you ignore them.”
“Could you try and imagine, just for a moment, what it’s like for us, to have our son sectioned partly because we had no support, and then continue to receive demands to contribute towards that non-existent support?”
“I can’t stop the letters but there is a note on the file.”  

This exchange, like so many others, underlines the lack of imagination and empathy, and general crapness within health and social care. Small point, but I would have appreciated some contact from CM since the email I sent on March 15th stating “LB’s punched his teacher. What can we do?” She’s been back off leave for a week now and could have spent a moment sending a brief response. She’s LB’s Care Manager, silly. Nothing to do with you now he’s an adult. I disagree. LB isn’t a discrete entity, disconnected to social networks. He’s part of a family. And that also needs recognition.

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 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.

ryan5-151

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

Charlie’s Angels

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At 8.45am today I was sitting with the phone ringing through the list of day services and respite from the social services. We were desperate for some help. Got to number three (No. 1 only took referrals through the county council and No. 2 sounded very dubious and said to ring back in a couple of hours when a manager might be there). The phone rang. It was Vicki, LB’s teacher. “We’re coming over to see you right now, me, Tina and Sue. We can have a chat and then Tina and Sue will take LB travel training.” Eh? Wha???

Twenty minutes later they were sitting in the kitchen, giving Chunky Stan fuss and organising a new school timetable for LB that didn’t involve him going into school at all (but them going out of their way to collect him and drop him off). Their focus was LB, and our family.

Sue and Tina went off with LB to catch the bus to town. Vicki turned to us saying it had all been a bit last minute; she’d told me on the phone they were going to come over before she’d checked with the head teacher if it was ok to leave school. They felt they just had to do it.

This is what support looks like.

And thank you beautiful ladies.