Brains on toast

15 October 2016

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There are some medical topics that are a complete no-fly zone online. If you dare to mention, say, vaccinations, ME/Chronic Fatigue, statins, or antidepressants then you are liable to be viciously shot down by one side or the other of the warring factions, depending on what you have dared to express. So, exchanging ideas, information and experiences is – impossible unless you enjoy receiving death threats.

 Electroconvulsive Therapy (ECT) is a corker. A brigade of anti-ECT vigilantes stalks the Internet and carpet bombs anyone who dares to suggest that maybe, just maybe, ECT is a useful tool in the fairly empty armory of treatments for severe depression. Their missiles include abusing doctors known to use ECT, and, shamefully, patients who speak about their experiences in anything other than a wholly negative way. Anti-ECT HQ is based in the US – but the Internet has no national boundaries, so anyone in the UK who is ‘unmasked’ as supposedly pro-ECT will be subject to exactly the same harassment. I was, when I tried to explore on a respected blog, http://rxisk.org exactly why I’d found having my brain fried so terrifying – and to explain that I’d revised my belief that my grey matter had been irreparably damaged by 36 zaps over a two year period. I’d had to think again as it became clear, some 10 years on, that my long-term memory was intact (in better shape than many of my friends). For a long while I firmly believed my memory bank had been irreversibly peppered with holes: that I had lost my childhood, the recollection of my children as babies. I was utterly convinced I would never be the same again. I was so enraged by the Royal College of Psychiatrists’ leaflet on ECT which stated that there ‘might be some loss of memory immediately preceding and after the procedure, but no evidence that long term memory was affected’ that I sat and laboriously annotated a great pile of the things in red marker pen: THIS IS NOT TRUE, before stacking them neatly back in the rack in the waiting room.

 ECT did absolutely nothing to cure my depression, but I had seen an astonishing transformation in a fellow patient. When I attempted to write about my ambiguous feelings about ECT on Rxisk, in swooped someone calling themselves ‘Truth’ (a danger sign incarnate) who informed me that my brain was, in fact, a mass of tangled burnt out neural connections only I didn’t know it. She knew though. Not quite sure how she’d scanned my head without me knowing but …the Truth is the Truth. Apparently.

 The Meadows was built with an inner sanctum, the ECT ‘suite’. So called, I guess because it had three interconnecting rooms: a pleasant sitting area with a couple of relatively comfortable low NHS chairs, a tea trolley with toaster, kettle and tea bags, milk, sugar, mugs, plates, knives and a supply of sliced bread (brown and white), pats of butter wrapped in foil and small plastic tubs of Robinson’s marmalade and strawberry jam. Exactly as you find in budget hotel rooms, apart from a narrow metal-framed medical trolley with rails and a thin blanket neatly folded parked in the corner next to the door to the second room. (I can cite as evidence of my undimmed memory the fact that I can recall all these small details 18 years later).

 The second room was tiny: just enough space for the trolley, patient on top, and an anaesthetist who gave the knockout drops and muscle relaxant. Opening off this, the clinic where they did the deed.  I never saw it, as I was unconscious by the time I was rapidly wheeled into the business end of things, where the electric current was fizzled through my brain through two electrodes fixed to my temples.

 After the induced convulsion, and surfacing from the anaesthetic I was trundled back into the sitting area, climbed off the trolley and given a cup of tea and two pieces of toast (brown, with marmalade).  The tour took about 15 minutes, max. I repeated it 6 times in three weeks – that first occasion.

 I was scared shitless by the whole experience, despite the kindness of the nurses. And so addled and confused for a week or so afterwards that I repeated myself endlessly, forgot the psychiatrist’s name and sent the same email four times in a row to a work colleague. (Small things, but embarrassing in retrospect). ECT failed for me – it cheered me up transiently for a couple of weeks the first time, never on subsequent occasions (although I got quite addicted to the warm zizzy feeling of the anaesthetic).

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Horrified? Aghast that such a barbaric practice still happened in 1998 and continues to this day? Memories of One Flew Over the Cuckoo’s Nest, and Jack Nicholson’s blank, zombie figure, his mind and character exterminated? You may well be – most of us who went through ECT don’t talk about it much to anyone. People outside the system believe, mostly, that ECT was abandoned years ago, a shameful stain on the none too blemish-free history of psychiatry. At a meeting of fellow patients back in the mid noughties, several were astounded that it still happened regularly. That was the patients…

Trouble is, as long as the topic is off-limits (unless you join the protesters), all of us who went through it, who could give useful feedback about why we found it so frightening, will generally stay silent. De-mystifying ECT might help people to make a choice about which treatment they would opt for: years of powerful pills which could damage their bodies (and brains) long term, or a short sharp shock which will addle them for a bit but might be less damaging in the long run. Medics are relatively honest about ECT: no one knows for certain why it works - when it does work, or what actually happens during the seizure that can jerk people so depressed they can’t eat or drink or get out of bed into life again. The most astonishing fact is that psychiatrists in the UK have worked to put in place a better consent system: it is the only form of psychiatric treatment which, now, you can refuse in advance in a written directive, which is legally binding however off your head you might subsequently become.

There is no such protection for patients against forcible treatment with drugs. It is wholly legal for a shrink to override the fundamental right to refuse medical treatment, restrain you and inject you in the bum with antipsychotic medication – an experience which many people never get over. I was lucky. That never happened to me but happen it does.

The thing that really got me thinking about ECT v drugs is the culture of denial around damage that powerful psychotropics can do. This means that those of us who suffered dreadful, probably permanent, drug damage are never believed. The evidence is simply dismissed. But tell any layperson you’ve had ECT and sympathy and horror flow freely, plus an unquestioning acceptance that you must have suffered irreparable, if undetectable brain damage. ECT didn’t work for me, possibly because by the time I (reluctantly) agreed to have it I was so buggered by a cocktail of antidepressants, sleeping pills, benzos and antipsychotics. Whatever ECT might have done to reboot my neural circuits had been disabled. I won’t ever know – no one will – because, due to its seriously contentious reputation, it is generally only used when all other (medication) options have been exhausted. If I could re-wind the clock, have had a respectful and thorough discussion about the pros and cons of medication and ECT as soon as it was clear I was seriously depressed – I might just have opted for the fried brains straight off. That is with hindsight. Now I know, to my cost, the harm that too much medication can cause I would go for ECT. Basically because for me, the evidence suggests it is by far the lesser of two evils. I won’t be signing any advance directive against having ECT should I get so ill again but I sure as hell would sign one that prohibited the forcible use of drugs. Sadly, that option isn’t available.

 Until the anti-ECT terror squad lays off persecuting those doctors who use it properly and cautiously, the patients who’ve had it - and until the (commercially driven) story that mental illness is best cured by pills (whose efficacy is uncertain and whose side effects can cause disastrous damage), then ECT will remain a hidden treatment.

In an ideal world the fear of having your head electrified could be greatly lessened by open days on the ECT suite – tours round the ‘suite’, demonstrations of the equipment (maybe on a willing shrink?) with tea and toast to follow in the recovery room. You can’t take a trip round the Meadows ECT suite because of course it’s gone. I have no idea how much it cost to install, maintain and use – or how many thousands of pounds were spent ‘upgrading’ it a few years before the hospital closed its doors. No one has done the sums. I don’t know where the local brain-frying centre is now but I do know that, given the choice, I would always have preferred to have it close to home.