Tag Archives: learning disability

Whose best interest?

Posted on by
1

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

Posted on by
1

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

Posted on by
1

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.

The Unit. Day 20

Posted on by
Reply

We went to visit this evening, a bit concerned as LB had been sleeping all afternoon. He’d been sleeping yesterday when Rosie and I visited and was sluggish for a bit while we were there. A change in medication was agreed at yesterday’s weekly team meeting. Concern tentacles appearing a go-go.

AbiHe was in bed but woke up like a chill pill when we pitched up. Rich gave him photos off the Fagan and Whalley website (a new competitor on the heavy haulage company front) and we hung out, chewing the fat about Dappy’s recent altercation in a Hereford nightspot, Maggie T’s death and adding photos of Chunky Stan looking out the window on a holiday to Devon, to the growing gallery on his wall. We had a chuckle.

When it was time to leave, LB took us downstairs to see  us out. No staff were around but there were tasty cooking smells.

“You’d better find someone to let us out,” we said.
“SECURITY!” called LB cheerfully wandering off down the corridor. He reappeared alone.
“Ha, looks like we’ll have to stay the night. That’ll be a laugh.”
“No no no!” said LB, with a sudden determination.  “J! J! Where are you J!!?”

Cheerful times. In an uncertain space.

Imagination and recognition

Posted on by
3

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 14

Posted on by
1

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.”

Knitting solutions and sense-making

Posted on by
5

It’s funny really. You have a (learning) disabled child, the world kind of falls apart and then falls back together, bit by bit. There are unexpected highs, deep lows, challenging times and a backdrop of relentless meetings with professionals. These meetings are sort of necessary (because what else have you got without any reference points?) but pointless because there is a lack of real understanding or engagement with either your child, or your lives as a family.  We eventually shook down, accepted LB’s difference and began to notice his humour, quirkiness and qualities such as generosity, lack of guile, artifice and his honesty. We treated the meetings with gritted teeth. And got on with life.

Then came the recent inpatient assessment and subsequent sectioning. I was tipped into mum redundancy (MR). Suddenly and without warning. The warnings for the impending hospitalisation were flashing brightly since Christmas, that was only really a matter of time (though it could have been circumvented with effective action). The warnings for MR were completely buried.

Call me old fashioned, but it strikes me if you have (not in an ownership way) children, you don’t really stop being their parent. I still tell Rosie what to do. She doesn’t always do it, but I feel I should provide some steer. My mum is still my mum. These are lifelong positions, that shift and change, but (commonly) remain centred on love, responsibility, reciprocity and a gut-wrenching desire for your child/ren to have the happiest, most fulfilling lives, possible. (I realise that this isn’t always the case).

This is confounded when the child is learning disabled and reaches that (constructed) age of adulthood. Necessary changes to the way in which learning disabled people’s lives have been conceptualised and understood, a shift from institution to community living, and the accompanying political call for self advocacy, autonomy and empowerment, has led to a focus on rights. I support this move completely. Learning disabled people, like anyone else, have the right to make decisions and be encouraged to have aspirations and the opportunity to lead fulfilled lives.

At the moment, LB has the right to decide whether he sees us or share his health information with us. The implications of these rights are substantial. The problem for me is, an emphasis on his rights can be misunderstood, misinterpreted, misused or treated as something discrete, outside of the broader family context. I believe, barring some thunderbolt shift in health and social care provision, that LB’s potential to lead a fulfilling and happy life will necessarily involve his family. For us to be sidelined at this point will have a potentially catastrophic effect on his life chances.

‘Eh? What’s that?’
‘He could have an advocate. S/he would look after his best interests.’
‘He turned down the opportunity to have an advocate. He doesn’t know what they are.’
‘With clear explanation, he can decide to have an advocate. He’ll be offered one again in ten days time, by the terms of his section.’
‘That’s great. But they won’t know him. Surely that’s important?’

Does our experience of LB’s family count for nothing?? Should an advocate be a substitute for that understanding, or instead complement it and work with families?

Once again we’re left without any guidance. It’s like being back at those early days when we knew there was something different about LB but given no guidance about what that meant, for him and for us. We’ve re-fallen into an unexpected space in which he is treated as a consenting and competent adult. A space which is so incongruent and so alien to our experiences of the past 18 years.  Maybe it’s a good thing in theory. Maybe LB is at a stage in his life to shake off the confines of his family and do what he wants to do, without dishwasher duties or an expectation that he will join in social obligations. I don’t think so.

I keep returning to how this idealistic position ignores the current political climate and contraction of support and services for learning disabled people. As a redundant mum, I can use the hours I spent advocating for him (unacknowledged and unrecognised by services) doing something else. Like developing my beginner crochet skills,

Or maybe my/our expertise could be recognised and used to help LB in partnership with those who now (supposedly) help him realise his rights.

ryan5-171

The Unit. Day 12

Posted on by
Reply

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

Posted on by
2

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.

Definitely not laughing boy

Posted on by
3

LB is upstairs, muttering and smacking his legs, shouting out and watching scrap metal videos on youtube. We had a burst of sunshine this afternoon when he came down for a piece of coffee cake and chuckled about how good it was. Funny how tiny snatches of what was can be so powerful. I went up to see him a short while later but he was talking a bizarre type of gibberish and looked at me with hatred. He muttered about how Sara had been killed.  “Ok, matey, I’ll be downstairs if you need anything”, I said,” [fake] cheerfully.

We are occupying this strange, exhausting, stressful space at the moment. He’s threatened Rich but remains OK with Tom and Owen. We have the medication to knock him out if necessary, though where the line is drawn between deciding he needs medicating before it’s too late to get him to take it isn’t clear.  We are piecing together strategies; not say no to him outright, prepare him carefully for any expectation he will do something, listening constantly for any shift in tone or intensity, mentioning any past special interest (Mighty Boosh, Irish lorries, cross channel ferries) to try to snap him, even fleetingly, into the coffee cake mood.

Today I chased up social care. Yes, despite the set of exchanges on Friday afternoon with the learning disability team, I had to contact them. The duty Care Manager seemed active and concerned which is great. He put me in touch with someone from Southern Health Outreach (based at Saxon House, the building with the snooker table). I rang them and have an appointment for April 3rd. Seventeen long days away. The psychiatrist rang straight after. She suggested we meet or have a telephone consultation soon. Er, right now would be good, I said. She found her notes, listened to me (without really listening) and suggested doubling his anti-depressant. We are meeting her in a week to see if this has helped. The psychologist was already booked in to meet us on Thursday. That is no support our support right now.

I’m writing these miserable posts because I think that we shouldn’t (not we as in our family but we as in every family with a dude like LB) be in this position. It screams to me that support and services are woefully inadequate and structured in a way that ultimately cause harm rather than good. LB’s following in almost identical footprints to a classmate, a situation I never dreamed of six months ago.

Now I ain’t a psychologist, or a psychiatrist, but I think LB probably wanted a mate, a girlfriend and a slightly different structure to his life. And now he’s retreating into some hideous fantasy type world that has got trouble written all over it. Doubling anti-depressants and organising late in the day, middle aged carers isn’t going to do an awful lot. But hopefully I’m wrong.