Limits and horse-shite

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.

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?

“A picture of Mum?”

One thing that doesn’t happen so much now that Laughing Boy is sixteen, is endless (often meaningless) appointments with professionals.  Countless hours have been spent travelling, waiting and meeting a range of different people in different settings.  One series of appointments, four years ago,  was with a psychologist geezer (Psych Sid*) about LB’s ‘challenging’ behaviour.  These appointments seemed particularly pointless as Psych didn’t want LB present.   Continue reading