Author Archives: sarasiobhan

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.

Definitely not laughing boy

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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.

Mysteries of learning disability ‘care’

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Yesterday, I raged enough at the emergency social care guy to get the duty psychiatrist to call me. This is the learning disability team psychiatrist. We had an astonishing exchange that went on for nearly 20 minutes. He kept insisting that, if anything happened this weekend, we had to call the out of hours GP who would give us a prescription for LB. He would email the other psych, who had discharged him, and tell her what had happened for Monday. I tried to explain that when LB goes off on one, he goes off on one and there ain’t really a convenient space to call the GP, collect a prescription and find a nearby chemist. He didn’t get it. LB ain’t his patient. He ain’t seen him. He can’t do anything else.

Blimey, that don’t matter. Dr Crapshite only saw him once before discharging him so no big relationship there.

No dice. He just kept repeating the out of duty GP path. It could almost have been a recorded message.

I don’t get how he can be a specialist in learning disability and have no understanding of what I was describing. I also don’t understand what the point of a duty psychiatrist is if they ‘can’t’ do anything. Stupid, meaningless layers of process that just mean ultimately, nothing happens. Eventually he asked me if LB had got worse recently. “HE PUNCHED HIS TEACHER IN THE FACE THIS MORNING!” I exploded. “Oh, has he not done that before?”  I hung up.

The phone rang straightaway. He’d leave a prescription for lorazepam at our surgery.

“Thank you,” I said.

Comic relief day. No.

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LB punched one of his teaching assistants* in the face this morning.

Horror.

I rang the emergency number on his Care Manager’s ‘out of office’ email and was told someone would ring back. The guy called back ten minutes later and suggested a referral to the learning disability team nurse who specialised in challenging behaviour.

“Ok, how long will that take?”
“Well I’ll put the referral through next week and she’ll get in touch when she gets it. I’m not sure how soon she’ll be able to come and see him though.”
“Eh?? Have you listened to what I’ve said?????” 
“Er, sorry?”
“What are we supposed to do in the meantime, if he turns on someone else?????”
“Well, I could make it an urgent referral I suppose… Ok. I’ll put it through as urgent then. And there is a psychiatrist too. I don’t know if….”
“She.discharged.him.last.week.”
“Well I could try ringing her this afternoon.”

Thirty minutes later he rang back.

The psychiatrist had gone home, he’d spoken to the duty psychiatrist; we have to go to the GP and ask him to ‘escalate’ LB to the psychiatrist.

I’m putting it out there now, the support and services for young learning disabled people in Oxfordshire is worst than crap-shite. Unacceptable. Please feel free to pass this link on to anyone in health and social care. Or anyone really. Things HAVE to change. And not just for LB.

*Sue, who has gone about as far beyond the call of duty as you can with LB, including getting in contact with mermaids around the world and sitting around in a stinking, freezing cold workshop every Wednesday, while LB does mechanic training.

Limits and horse-shite

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Well the light hearted, fun chit chat involving LB and his unusual take on the world, that partly inspired this blog, seems pretty distant now. I’m glad I captured some of it on these pages. It’s currently masked by reasonably regular extremes of behaviour that are unpredictable, aggressive and deeply upsetting. The trouble is, there isn’t any real (effective, valid, meaningful) support to deal with this.

I got a call at the beginning of a meeting in Manchester on Monday, after a Mother’s Day that included, in equal measure, horror and lovely, lovely love stuff. LB had had a serious meltdown? crisis? situation? at school. It sounded awful and his teachers and the school nurse were understandably shocked and upset by it. I could only say, standing in the corridor, trying not to cry with the futility of the situation, ‘I don’t know what to do’.

Cripes. Well who does know? Who should know?

Er, health professionals? Highly trained specialists who have the relevant knowledge to help LB and guide us through this.

No. Not really.

Trouble is, they won’t say that.There is a faux professionalism that involves sticking to a script that is irrelevant. Without that script there is nothing. LB’s unusual behaviour challenges, tests or confounds the boundaries of their knowledge. And this, in turn, is complicated by the resources available. This is not a comfortable situation for anyone, so we go through the motions in a performative way. Questions asked. Answers given. And they (pick your health professional) ease out of our home. No further forward. No change.

Tomorrow it’s the turn of the (learning disability service) psychologist, who was passed the baton by the (learning disability service) psychiatrist (who did nothing). Our GP embraced her contribution this afternoon in an obviously appalling situation.  I promised to be open-minded when I meet her.

“Can you prescribe something like a horse tranquilliser as well, maybe with a dart gun, for those particularly tricky moments?” I asked. “No,” he coughed, “this can’t be resolved through medication. LB needs help to learn strategies to manage his behaviour, aggression and anxiety. That is the role of the psychologist.”

“Ah, okeydokes,” I said, leaving his office, with my promise taking a hammering.