A blog post in waiting, on imposing standardised mental health questionnaires on patients:
On twitter (my tweets and the responses of others):
Related posts:
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Some thoughts on the new study that finds a link between autism and mass murder (here). I’ll turn it into a proper blog when I have time but in the meantime it’s the tweets I sent earlier today together with the responses of the lovely twitter people. Below are links to mainstream media coverage.
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This morning, there was an interesting piece on BBC Radio 4’s Today programme reporting on a study which reported a link between autism, head injury & mass murder. One of the researchers was interviewed, together with a professor of criminology who provided an interesting critique.
It was a shame that the presenter seemed unsure how to pronounce “autistic”. And a very great shame when he repeated the harmful misconception: “surely murderers are psychotic”. And funny to learn that the study into mass murder and serial killing was done at the Glasgow Institute of … Health and Wellbeing.
Of course, as with other such studies looking at the characteristics of people who’d committed heinous crimes, The implication is we’re to walk down the street keeping our eyes peeled in case someone with #ASD & #braininjury chops us up with an axe. What is the purpose of such studies? What’s the desired outcome from going through old murder case? And to what use can the results be put? The aim of such studies seems to be to find similarities between those who commit heinous crimes – to come up with groups & percentages. But what then? What’s the purpose in knowing these groups & percentages when such heinous crimes are incredibly rare? What’s the use? It must be a buzz for researchers when they come up with a theory (#ASD + #braininjury = mass murder) then find it works in other cases. The researchers claim the purpose of the research is predictive & preventative: to predict future murders, & prevent them. But can we? What prediction can we make by knowing a certain % of mass murderers have #ASD, when mass murderers are a miniscule % of people with #ASD? What prevention can we do by knowing a certain % of mass murderers have #ASD, when mass murderers are a miniscule % of people with #ASD? What prevention can we do by knowing a certain % of mass murderers have #ASD, when mass murderers are a miniscule % of people with #ASD? How would we predict or prevent mass murder & serial killing – using some sort of screening programme? Who would we screen? And how? Screen all people convicted of one murder to see if they have #ASD & #braininjury then predict they’re at risk for serial murder? Then what? Screen all people with #ASD to see if they have #braininjury &, if they do, predict they’re at risk of being serial killers? And then what? What do you do with such predictions? How do you turn that into prevention? And how will you know it’s worked? If you screen people then predict their likelihood to be serial killers, what do you do with them – lock them up based on a prediction? Screen people & then, on the basis of statistics, predict they’re at risk for being a mass murderer, then lock them up? How long for? Where? Who does the screening? Who does the prediction? Who decides who gets locked up? Psychologists? Psychiatrists? Who? Considering such questions makes it plain & clear that prediction & prevention of mass murder in this way are non-starters. Predicting & preventing heinous crimes using screening programmes based on statistics from old cases will not & cannot work. Statistics & screening to predict & prevent heinous crimes makes for a good science fiction plot – but would not work in practice. It’s a simplistic solution with a superficial appeal which breaks down under any sort of scrutiny. Yet locking up people preemptively purely to prevent heinous crimes was looked at in the UK very seriously a decade ago. It was almost law. Remember the proposal to detain people with dangerous and severe personality disorder even where they had committed no crime? At the time it was said that 6 people would have to be detained to prevent 1 from acting violently. What about the other 5? So why – when screening, prediction & prevention could not work – do researchers quote them as justifications for their work? Hard to say. What is the reason for carrying out such studies? What do we hope to learn? And to what use can such knowledge be put? Hard to say. What is easy to say, however, is that studies linking #ASD with mass murder & serial killings raise fear & concern by & of people with ASD. Even though researchers – rightly – say the vast majority of people with #ASD are LESS likely than the general public to be violent. What are the benefits of such studies (other than to the intellectual curiosity of the researchers)? Press reports I’ve seen don’t say. The purpose & benefits of such studies are unclear. But, on the other hand, the harm caused to people with #ASD is clear. With mass murder & serial killings so rare yet #ASD so common, that’s a huge number of people needlessly labelled “potentially violent”. If you want to prevent (or reduce) violent crime, there are better ways to do it than screening people with #ASD. If you want to prevent (or reduce) violent crime, you will not do that by creating fear & suspicion of a vulnerable group. As Prof Wilson of Birmingham Uni said, theorising about mass murder doesn’t help us or get us any further in understanding mass murder.In other words, such studies shed more heat than light: they are inflammatory & stigmatising, without providing any helpful information. And yet they get reported. Because heinous crimes are rare & therefore newsworthy. And that gets researchers excited. Have people with #ASD or those who care for them learned anything helpful from the study? No. They’ve just got another reason to be fearful.
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Last week, my support worker came round for the first time to help me make a start on sorting out the pickle I’ve got myself into. She was only here for an hour and she didn’t even do that much. She just sort of stood over me while I sorted stuff into piles and encouraged me when I got stuck. But it made all the difference. I was able to take two bin liners of clothes to the charity shop and then, afterwards, I went and got my specs fixed. I got more done in that one hour with the support worker than I had in the previous six months (or even longer) of trying (and failing) to manage on my own. A little support went a long way.
Before the support worker arrived, I’d done my usual thing: I’d walk into the room we’d agreed to start with, pick something up, walk around, feel confused, put it somewhere else, walk out, come back. Then start all over again. For two hours. In other words, I achieved nothing – other than making myself feel more useless and frustrated with my seeming inability to achieve anything.
It was very different with the support worker there. She helped me stay in one place, to keep focussed on one thing at a time, to keep going, to get something (however small) finished.
The support worker had only booked me in for an hour so, when the time was up, she said, “Next time I come round, we’ll take those bags to the charity shop”. I said, “Oh no, I’m coming out the front door with you. I’m taking the bags to the charity shop NOW.” I knew what would happen otherwise: those bags would be softly calling to me; I’d take a peak inside; I’d start to reconsider that little top there, oh and that one there. It’s all good stuff. So, when the support worker left, I left with her. She turned right to go to her next client and I, carrying the two bin bags of clothes, turned left to go to the charity shop. I handed them in and walked away, job done, two bags lighter.
And the interesting thing is that, even after the support worker left, the effect continued: after leaving the charity shop, I walked on to the opticians and got my glasses (which broke months ago) fixed. And fit only cost £3. I tried on a few frames (I need new glasses really) but they didn’t have anything that was quite right. But still, I had a go at choosing, which is more than I’ve been able to do all this year.
Of course, sorting out two bin bags of clothes and getting my glasses fixed are things I should be able to do myself. It’s just … I haven’t done so. I haven’t been able to do so. I don’t know why. It’s puzzling. I’m an intelligent and educated, capable and practical adult. I’m all grown up. But I just … can’t get stuff done.
And, as I stand still, of course the world continues to move. I’m sitting here now in partial darkness, with my desk lamp off, because the bulb went last week. As they do. Of course. And I haven’t managed to buy a replacement. Or even check the drawer in the kitchen to see if I already have one. And then there’s getting it together to change the bulb. Hence I end up sitting in half-darkness. And, as life moves on, all sorts of “bulbs” need “changing”. Otherwise, you end up sitting in ever increasing darkness as, one by one, they go out.
That’s what’s been happening to me and it means that, over time, rather than getting on top of things, I’ve managed to get myself into a pickle. I haven’t been able to manage all those little daily tasks that, tackled as each arises, keep life ticking along.
But at least now I have two fewer bags of clothing in the house. And, as a bonus, my glasses are fixed – so I can see where I’m going a bit better. There’s a metaphor in there somewhere.
I wish (like my relative who had a good experience of psychiatric inpatient and community care) I’d had support when I was first discharged. I think I’d have been in a very different place than I am now if I hadn’t been left to fend for myself for so long. Even though I’ve only been allocated an hour a week with the support worker, it’s making a difference already. A little goes a long way.
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I continue to find it striking that expectations in mental health care are so low and are measured in largely physical terms. Statistics are quoted for death rates, rather than full lives. The fact someone is alive is not proof of mental well being. The numbers of bodies alive on hospital beds or dead in morgues is a measure at the extremes and tells us little of people’s everyday lives managing mental health problems.
I am alive: hooray! But I am untreated, apart from drugs, nearly three years on. Three years is a lot of seconds. Three years of being parked on medication and welfare benefits, of experiencing troubling symptoms. Three years of not earning, of unfulfilled potential, of dependence on the whims of Atos and the Work Capability Assessment. Yet I’m seen as some sort of success story. Or, at least, not a failure.
If you go into hospital for something which is not life-threatening, the fact you are still alive some time later is not evidence of a successful intervention or treatment. If being alive is seen as success – especially where death was never on the cards (other than in the normal course of the aging process) – that is a sign of shockingly low expectations for people with mental health problems or the possibilities of mental health treatment. If all that is required of mental health services is to keep patients alive, why not stick us all in wards on drips in suspended animation? The effect would be largely the same as this suspended animation I feel I’m in at the moment.
It seems all that’s required of mental health services is to keep patients “safe” – which means safe from physical harm, whether to ourselves or others, or from others. Certainly not safe from mental harm – I say this as someone who came out of inpatient psychiatric “care” with post-traumatic stress disorder caused by my experience on ward. Certainly not treated or cured for mental distress, since there was no psychological help. Just drugs.
Once a week on ward we were weighed and measured, to keep track of physical markers. Was our mental well being assessed once a week? No. Never. On ward, there was a list of banned items (plastic bags, leads, alcoholic hand gel, bath plugs) which could be a risk to physical safety. But was there a list of things banned as potentially harmful to mental health? No. Instead, clearly mentally-harmful practices such as restraint, seclusion and forced medication were routine. And was there a list of required items for mental well being, nurture and support? No. Just four walls, locked doors, three (fibre-free but tasty) meals a day. “Safe”.
Six weeks ago, my psychiatrist promised “immediate” help. Nothing has materialised. Yesterday, my GP told me to up my drugs dose and wait. Waiting, existing, sedated, unable to function sufficiently to do anything other than shuffle to and from the shops and write in 140 characters. But at least I am alive. In a way. It’s a sort of life. A physical one. An existence. I live to exist another day. Job done.
It seems that, if a patient is physically “safe”, then the job of mental health services is done. Existence, so long as it’s “safe”, is success. Keep a patient “safe” – safe to exist another day – and the work of mental health services is done. Never mind what the person was before they became unwell, or could be in the future. So long as they are physically treated and physically safe.
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For me, having mental health problems has been a journey of firsts: discovering or going through lots of things for the first time.
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Sectioned 