I try not to think about ECT too much, but I have been quite open about having had it, and, given that I work as a psychiatrist, there are inevitable reminders. I don’t think that I will ever be able to dwell on it without a degree of inquietude, and there are various reasons for this. I can’t deny the stigma. Mental illness is far more freely talked about now, but the more severe aspects are still shrouded in a certain amount of mystery. Like many people, I have had ECT for psychotic depression, and even now I find it difficult to talk about what I felt and believed at those times. It was outwith the realms of what was, for me, normality, and I wouldn’t expect it to sound reasonable or normal to others. I am ashamed of this, and I can’t share it with my friends. I am ashamed of having required ECT, and dread it happening again.
In view of this, I was both pleased and disappointed to see the new ECT information produced by the Royal College of Psychiatrists. Pleased because they give a clear and informative description of ECT including potential adverse effects, and disappointed because I think these latter are still underplayed. My memory loss from ECT has been significant and lasting, and I don’t think I am alone as regards this. When I first had ECT I was an in-patient, and I don’t think I fully appreciated the memory loss as I had very little to remember. But I had several ECT courses over a couple of years, and I don’t remember very much about my baby daughter’s first years. Later, having it as an out-patient, it was much more obvious to me – at least afterwards – what I had forgotten.
The other longer-term side effects that some experience, particularly of long-term brain damage are acknowledged in this revised information. While this is very important, I do think that potential patients and relatives may be frightened reading this. There is no easy solution.
ECT was also a feature in the Mail a couple of days ago. The accompanying diagram that depicted the therapy was off-putting although not over dramatic; but the article claimed ‘mounting evidence that it can cause harm’. The mention of One Flew Over The Cuckoo’s Nest was predictable but depressing. I have no idea why some individuals have long-term problems after ECT, and cannot say whether this relates to the treatment or not. But the title is horrible – ‘dozens of patients’ with ‘brain damage’ after ‘electrical currents through the head’. What do the many people like me feel when we read this? Are we also brain damaged?
But there is one problem that disturbs me, mentioned by the Mail, and that is the issue of informed consent. I have had around 70 separate ECT treatments, probably more than 8 courses, and I have no memory of consenting for any of these. I’m sure I did consent – there’s written proof – and I’m sure that ECT was explained, both to me and my family. But the very side effect that is most talked about is the one that means that my informed consent is actually pretty useless. I have a vague memory that I had to sign something again during the most recent course, presumably for more treatments, but my main worry after this was that I couldn’t remember whether I’d signed my maiden or married name.
Now I don’t say any of this to criticise my care, more to think what would or could be better. It came to me recently that it was actually fairly pointless providing lots of detailed information prior to treatment if you don’t do this repeatedly throughout and afterwards. I don’t mean just confirming that patients are better, but checking with them that they understand what has been done, and what side effects might occur. This would hopefully ensure understanding in the often-bewildering months of recovery.
For me, I would like to be reminded of the memory problems, not told that they are uncommon and that they will resolve. I would like to be told this beforehand, then again throughout treatment, and at subsequent follow-up appointments. I would like to be told that I may have blank periods, or, worse, confused and unclear memories, and that this is more likely due to ECT than to depression, even if both contribute. I would like to hear of the advantages, but I would also like to be able to ask about the more severe effects that some experience without being told not to worry about these.
If you give me written information, then remember that I will have lost it in the chaos that is my bedroom when ill. I won’t remember this, and may only find it months – or years – later when I decide on a clear out. Give it to me again.
I still believe that ECT is an effective treatment, possibly lifesaving in severe depression, and I would have it again. But why does it cause such wide polarisation of opinion? The language used in writing and social media is often emotional rather than scientific. Doctors get things wrong sometimes, but I do not believe that many are deliberately cruel. I hope that a more acceptable, but similarly effective, treatment will be developed, and I read about things like ketamine with caution but also with interest.
But at the moment there is not a good alternative, and ECT will continue to be used. The very nature of this therapy is that it is given to people who can barely think, and then it zaps their memories. It has serious side effects, and these are common. This is why I would urge all doctors who prescribe it to spend time with their patients, repeatedly explaining and ensuring consent, as well as acknowledging the memory problems. This could dispel a lot of the fear and lead to better recovery.
https://www.rcpsych.ac.uk/mental-health/treatments-and-wellbeing/ect