“ECT is the best thing that’s ever happened to me”: a service user’s testimony

(www.squidoo.com/shock-therapy)

 

If psychiatric patients are deemed as having capacity to make decisions, then in this country they cannot be given ECT against their will; but if psychiatric patients  are deemed as not having capacity, then a second opinion doctor can be consulted and people can be given ECT in their ‘best interests’ even if they are opposed to it; a large number of people receiving ECT are detained in hospital under the Mental Health Act 2007 and they are deemed as not having capacity and insight; so they can be given ECT against their will ‘in their best interests’.

I was nearly given ECT  when I was detained in hospital back in 2009. ECT was considered whilst I was detained as a treatment for my severe, enduring and treatment-resistant (i.e.  not responding to drug treatment) depression. I was deemed as lacking capacity and insight, so I could have easily been given ECT against my will in my ‘best interests’. Fortunately, I was not given ECT but just the thought of the likelihood terrifies me to this day, 4 years later.

Leonard Roy Frank, a long-time activist and survivor of electroshock and insulin coma therapy in the States, has described electroshock as ‘a crime against the spirit’ in an article that he wrote in 2002 for Ethical Human Sciences and Services: An International Journal of Critical Inquiry. I too feel that ECT is a spirit-crushing and barbaric treatment with devastating side effects – especially when it comes to the severe and permanent memory loss that large numbers of psychiatric survivors have attested to. (http://bit.ly/10kf0cSwww.madinamerica.comwww.madnessradio.net; www.asylummagazine.org).

Furthermore, in a paper by Read and Bentall [2] reviewing the literature on the efficacy of ECT, with a particular focus on depression, its primary target group, it was shown that studies lent minimal support for effectiveness with either depression or ‘schizophrenia’ during the course of treatment (i.e. only for some patients, on some measures, sometimes perceived only by psychiatrists but not by other raters), and no evidence, for either diagnostic group, of any benefits beyond the treatment period. According to the paper, there are no placebo-controlled studies evaluating the hypothesis that ECT prevents suicide, and no robust evidence from other kinds of studies to support this hypothesis. The authors conclude that given the strong evidence (summarised in the paper)  of persistent and, for some, permanent brain dysfunction, primarily evidenced in the form of retrograde and anterograde amnesia (loss of memory of events occurring before the ECT and loss of memory of events of the recent past after the ECT), and the evidence of a slight but significant increased risk of death, the cost-benefit analysis for ECT is so poor that its use cannot be scientifically justified.

I now have an Advance Directive specifying that if I become unwell again, I do not wish to have ECT under any circumstances. Advance Directives are unfortunately not legally binding in this country, so if I was detained under the Mental Health Act 2007, my Advance Directive could be overridden and I could be given ECT- but the medics would have to give a reason for such a decision.

Having said all this, I do respect people’s testimonies when they claim  that their lives have been saved by ECT. And there are such testimonies too. I find it difficult to comprehend such claims (for me personally, a life without memories – given that they are usually wiped out by ECT- is a half- life) but I do respect them nevertheless.

I came across a testimony of this sort published in the Guardian in May 2012 and entitled ‘What is having ECT like?’ [1] In this testimony, Lucy Tallon describes her experience of having ECT and claims that the treatment had  miraculously changed and improved her life, which stands in stark contrast to the usual portrayals of ECT in the media as barbaric and traumatic.

Here is what Lucy Tallon says:

‘What happened to Carrie Mathison in the final episode of Homeland wasn’t real […] I’m talking about the traumatic electroconvulsive therapy (ECT) scene. It’s actually not a big deal. And I should know – I’ve had it several times.

I’m 34, and I’ve had severe bouts of depression almost every year since university. I’m unipolar – I get no highs, only lows. I’ve never attempted suicide (that’s what everyone really wants to know) but I’ve had periods of several months where I’ve barely functioned as a human being.

Depression is the most horrific, degrading, painful experience there is. I’ve been on umpteen drugs and tried numerous therapies. But nothing stopped me getting ill, and nothing helped me get better. That was until five years ago, when I tried ECT. And it was miraculous.

So what was wrong with the portrayal of ECT in Homeland? Carrie grimaced, apparently in pain, once treatment started. Her sister was allowed in the room. Her impending memory loss was over-egged. Carrie said: “This isn’t Cuckoo’s Nest” but it wasn’t a great improvement. That 1975 film has a lot to answer for, as it is everybody’s point of reference for ECT.

In fact you are hard pressed to find a positive example of it. In the recent BBC drama White Heat, Tamsin Greig’s character had the treatment. Again, it was a traumatic depiction – and she didn’t appear to be given a general anaesthetic, which was factually inaccurate, even for the 1970s.

Dr Peter Byrne, director of public education for the Royal College of Psychiatrists (RCP) believes that attitudes towards ECT are informed by such cultural representations: “Only one mainstream film, Fear Strikes Out, (1959) portrays it positively,” he says. “ECT frightens people because they assume it’s barbaric, untested and has unknown effects on the brain. None of that is true; it’s the most tested and evidence-based psychiatric treatment of all.”

By contrast, Carrie Fisher’s 2011 memoir Shockaholic was a revelation, with her candid descriptions of having the therapy. “Over time, this fucking thing [ECT] punched the dark lights out of my depression,” she wrote. “It was like a mute button muffling the noise of my shrieking feelings.”

So what is it actually like? You go in, have your blood pressure taken, sign a form, lie down, go to sleep, wake up with a slight headache and go home. And often, you feel instantly better.

I’ve always been an outpatient, both on the NHS and privately. One involves more admin, and a less comfortable waiting room. The other costs rather a lot of money, upwards of £700 a go.

The memory lapses that follow the treatment are a bore, but that passes. The first few times, I didn’t remember arriving at hospital that morning. But for up to three months after a course of treatment, I can still forget names, routes and what I was just thinking. Some people experience it more severely but in the vast majority of cases, the memory eventually returns to normal.

Research continues into its effectiveness. A study published earlier this year that was led by Dr Ian Reid at Aberdeen University suggested that ECT “turns down” overactive connections between parts of the brain that govern mood and those responsible for thought and concentration. Reid is hopeful that his work will help to change attitudes: “If our study does anything to reduce the stigma of ECT and mental health generally, that might be its most important contribution.”

According to the NHS there were 7,000 treatments in England and Scotland in 2011, compared with 12,800 between January-March 2002 and 16,500 for the same quarter in 1999. However, Dr Islam at the Priory Hospital in Roehampton says the numbers have remained the same: 500-600 treatments a year. A 2009 RCP report concluded: “ECT is becoming an increasingly specialised field within psychiatry, psychiatrists are prescribing less of it and therefore gaining less experience of its use.”

It is a fine balance for mental-health organisations to be able to support anyone who has had a negative experience of ECT, while trying not to put off those who might benefit. Alison Kerry of Mind says: “The most important thing is that anyone opting for ECT is fully informed, so that they can give a truly informed consent.”

There is certainly still a stigma around it within the medical profession. When I had to be assessed while pregnant two years ago, I was giving my medical history to a psychiatric nurse in a very factual manner. When I mentioned ECT she interrupted and said: “I’m so sorry.” “No, don’t be,” I replied. “It is the best thing that’s ever happened to me.”

For those who do decide to try it, ECT remains a treatment, not a cure. But I can now manage my condition, which takes me out of circulation for two weeks rather than several months. The choice for me is a no-brainer’.

 

[1] Tallon, L. (2012) ‘What is having ECT like?’, 13 May. (www.guardian.co.uk)

[2] Read, J. and Bentall, R. (2010) ‘The effectiveness of electroconvulsive therapy: literature review’, Epidemiologia e Psichiatria Sociale, 19, 4, 333-347

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