Choice and autonomy my arse

At the moment our lives are becoming increasingly [hahahaha] complicated as LB has become very anxious and distressed. We’re in a big old hot pot, dealing with support and services underpinned [big fanfare] by the gov’s personalisation agenda. Key principles; Choice and autonomy.

Well this sounds like the baby. Choice and autonomy.. lovely, lovely, lovely. Let’s have a little looky at how this is shaping up eight weeks on;

Social Services. After a complete meltdown that resulted in LB out of school for a couple of weeks, the Care Manager acted instantly to organise a wedge of emergency direct payments for us to buy care. Good. We can choose what type of emergency support we want. Unfortunately, the kind of people who may be willing and able to hang out with a 6ft tall, young man who may, or may not become aggressive, are not that much in supply (and hugely in demand). So in practice, not so goodThe alternative is the Respite Centre with the snooker table. Complete fail. CM also offered to organise a round table meeting. Good. And, after a particularly alarming incident (Episode A), has given me an emergency number to call. Good. Unfortunately, if we call that number we are opening a window for LB to potentially be sectioned. ‘Mmm. Well I’m sure they will do what’s best for him in that situation‘…I hear you think. Not really. ‘What’s best for him’ relies on what’s best for him being available. Not a mental health unit over a hundred miles away in Norwich where two of his class mates have spent months. There is no in-county support for young learning disabled people. That is a complete fail.

Health. The GP instantly prescribed anti-depressants over the phone without hesistation. Good (in the sense he took our concerns seriously, not that LB is now on more medication). After LB mumbled something about suicide near some professional type person, he was whizzled into a same day appointment with a psychiatrist. Good. (Well a bit weird that the concerns we have are largely ignored but one word gets instant attention). The psychiatrist asking LB if he felt suicidal was a complete fail. Never, ever put ideas into that boy’s head like that. She then, after a telephone appointment 6 weeks later, discharged him. Not so good. ‘Why are you discharging him?????’ I asked, seconds after I’d told her about Episode A. ‘He was referred to me because of the concern about suicide, now that is no longer a concern, the psychologist will help him to manage his anxiety.’ Not so good [and given our experience with psychologists over the years (star charts anyone?) suspect this detour will be a complete fail].

So what are we left with? Money to pay for care. No care to buy. And no one doing anything to help LB become less anxious.

Choice and autonomy? Feels a teeny bit flaky to me. Can we have some action?

Monitor, distract (and Chunky Stan)

Brief summary. LB’s become very anxious, constantly agitated and out of sorts over the past couple of months. He’s developed a fear or phobia of someone harming him.  His teacher/school nurse have suggested he be referred to mental health services which we’ve resisted. First, because we feel the medicalisation of these dude kids is a bit too free and easy (and can be damaging), and second, because previous encounters with mental health services have been pretty pointless (along the lines of “Er, have you thought of using star charts?”)

ryan5-25Then the Christmas tree fell over. Probably because all the baubles had been put on the same branch during a bun fight deccy situation. ‘Mmm’.. I thought. ‘This don’t bode well’….

Christmas morning, LB lost it over a tiny thing and had a distressing episode (? breakdown? frenzy? malange? Slinky malinky?) Not sure what language there is to describe this sort of thing, other than crap, meaningless jargony social care/health type stuff). But horrible. For everyone. Especially so at Christmas.  He stayed home, rather than going to his dad’s, and we swung into a ‘monitor and distract’ routine. For those of you who haven’t come across this (you lucky bastards), it goes like this;

    1. Constantly listen and look for any signs of mounting distress (in LB’s case, talk of being attacked, gesticulating and gurning).
    2. Act instantly to stop these (in LB’s case, through a firm ‘Stop it now’).
    3. Follow this up with a distraction (in LB’s case, an Eddie Stobart book, Mighty Boosh DVD, drawing cartoon figures).
    4. If necessary, follow this up with an uber distraction (in LB’s case, a very long, hot bath).
    5. Revert to A.

ryan5-23So 48 hours of monitoring and distraction was successful but relentless, wearing and, again, pretty shite over Christmas. We also weren’t confident of containing his distress anywhere other than home. I called the GP who suggested a type of prozac. And some emergency tranquillisers to use, if necessary, until the medication started to work.

That was yesterday morning. Last night (after step D) LB turned into a bit of a chill pill. We stayed up watching documentaries like Cop Squad with him. Enjoying the peace.

A mistake of course. Other family members also need monitoring. Like cheeky Chunky Stan.


Layers and layers…

Still a bit grumpy this week, sorry. Dunno why. Unfortunately, the grumps weren’t helped earlier by remembering the experience of LB’s epilepsy diagnosis last year.

I won’t go over the whole sorry, sad story but just focus on a tiny part of it. The GP. Just to illustrate the layers and layers of crap and nonsense that parents of disabled children (and others) are subjected to.

LB was discharged by paediatric neurology after investigations into some absent type seizures he’d had. They said he needed to learn to manage his anxiety.

Next thing, I get a call from his deputy head teacher, while I was at work. She passed the phone over to the paramedic who reassured me that LB was now conscious after full tonic clonic seizure but on his way to A&E in the ambulance….

Surely pretty high up on ‘parents’ worst nightmare’ scale?

He was discharged after six hours in A&E and the next day I rang the (random) GP and filled her in with what had happened.

“ I wondered if you could re-refer LB to neurology?”
“Well you’ll have to bring him in for an appointment..”
“Well I need to see him before I can make a referral.”
“Why can’t you just refer him?…He gets very stressed at the doctors and has obviously just had a pretty stressful experience.”
“Well I need to see him before I can make a referral.”
“Why? Why do you need to see him? I don’t understand. What is seeing him going to do?”
“I need to take his blood pressure.”
“WHAAAAA???? Whaddayamean????? He was in A&E for six hours yesterday having everything checked. WHY DO YOU NEED TO CHECK HIS BLOOD PRESSURE???”
“I’m sorry Ms Sarasiobhan, but I cannot make a referral without seeing the patient. It would not be accepted by the practice.”
“Are you listening to anything I’ve been saying? He had a referral to neurology, after being seen by the GP six months ago. He spent 6 hours in A&E yesterday after a huge seizure. Why can’t you just write the letter???”
“If I was to write the letter not having seen him, I’m afraid I would be lying. And I’m not prepared to lie.”
“Don’t lie!!! Just say what happened. He shouldn’t have been released in the first place without proper investigations, he needs to get back there ASAP. Why can’t you just make the referral?????”
Sniff. “Well, I’ll write the letter but I’ll have to phrase it in a particular way. I don’t think it will work.”

Four weeks later we get a letter from the hospital saying that LB had turned 16 since the original referral. He needed to be re-referred by the GP to adult neurology.

Grumpy? I dunno.

The egg of trust and the GP

LB had an appointment with the GP after school today. He’d had a liver function test to check out the medication for his newly diagnosed epilepsy.  The doc said that there was a bit of a problem because the blood level showed that the drug was at a level that suggested it wasn’t being effective.  Instead of a level (of something but no idea what) of between 40-80, LB’s blood showed 25.

The options were to up the dose to a level at which it was effective, continue the dose (but it wouldn’t be achieving anything) or stop the dose because, as it wasn’t working and he hadn’t had a seizure for three months, he didn’t need it. It was up to me to decide.

Whoa. Hit me with the first example of non paternalistic decision making I’ve ever experienced when the stakes are so high, why don’t you?!  The potential of tonic clonic seizures or even stronger medication with hideous long term side effects.

I got the doc to talk me through it all again, and once it became clear that upping the medication was only really treating the medication, as opposed to preventing seizures, I decided to keep the dose as it is until we met with the neurologist again.  I’m a bit suspicious of stats at the best time and didn’t really buy the 25/40-80 stuff. So the outcome of my first patient weighted decision making; defer the decision.

So home, kettle on, dig out school diary to find out the latest happenings in the sixth form.

“LB has been brilliant today. He has an egg to look after as part of our work on trust and bring back tomorrow hopefully in one piece”.

“Wow! An egg of trust? LB! Where’s your egg matey?”

“In the bin.”

“What? Whaddaya mean???”

“It’s in the bin, mum.”

And it was. Crushed. Barely retrievable.

“Why did you chuck the egg away, LB?”

“Cos I’m ANGRY WITH THE SCHOOL. They wouldn’t let me do what I wanted to do”, he fumed.

“Yeah, well sometimes you have to do what you’re told, matey”, I said, putting on a pan of water to boil a new egg of trust.  “And sometimes you  wish you were told what to do…”