On December 2nd, at approximately 11 a.m., I was attacked by an alien death ray. Well, that’s how it seemed, anyway. Intense and terrifying, the attack didn’t match my expectations of a heart attack, stroke, or any other natural phenomenon.
It all began with a strange pain in my thumbs, which grew over the course of a few minutes into a kind of crippling electric numbness that spread up both arms, making them twitch uncontrollably but feel weak at the same time.
And then it seemed to stabilise at that level. I remained fully conscious, rational (apparently, anyway), and able to move. My breathing wasn’t affected, and I didn’t have pain anywhere else. I was very frightened by the sudden onset and severity of the attack, but at the same time completely mystified.
After a while, though, I began to feel very cold. So I went to bed with a hot water bottle and gradually began to feel a little better.
So then it was blue lights and sirens to Cheltenham General Hospital in the company of two very helpful and competent paramedics. I think I frightened one of them, though, because as she was attaching wires to my chest in order to monitor my heart, she suddenly stepped back in alarm.
“What’s that rash?”
I looked down, and sure enough I seemed to have a rash. The reason for it was immediately clear.
“It’s from the hot water bottle,” I replied, to her evident relief.
In the hospital there were more tests. An ECG, the record of my heart’s electrical activity, was abnormal, but in an unusual way that no one could quite make sense of. A stroke couldn’t be ruled out, either. So I was referred to both the cardiac unit and the stroke unit at the same time, just in case, and kept for observation with ECGs every hour all night.
Not an alien death ray after all
After a while, quite a while actually, the mystery was finally resolved. It hadn’t been an alien death ray after all, or a stroke, but a slightly unusual heart attack.
No one told the stroke unit, who phoned my home to ask where I’d got to.
The reason no one could make sense of the ECGs turned out to be that someone had attached some of the wires to my chest in the wrong places. Oops. (Is “oops” the right word? Heart problems aren’t serious, are they?)
A blood test was the clincher. There’s an enzyme that the heart releases when it’s damaged, and I had a lot of it in my blood stream. Therefore, definitely heart attack.
After a proper ECG with the wires in the right places, and a CT scan, it was clear exactly what the problem was, and I was whisked off for an operation to de-gunge the artery responsible and fix it up with some stainless steel wire mesh (known as a “stent” for reasons nobody seems very clear about).
The operation was a technical marvel, needing just a local anaesthetic and a tiny incision in my wrist, which now, at the time of writing a couple of weeks later, I can barely even see. So I was awake the whole time, listening to what was going on.
Recovering and not recovering
Recovering in hospital over the next couple of days, it was clear that I’d got off lightly by comparison with some of the other people in the cardiac ward.
A chap across the way from me, for example, had had a pacemaker fitted. He should have been feeling better than he had been before his operation, and it’s likely that in physical terms he was. But over the course of a day his mental health deteriorated dramatically.
At first he had seemed perfectly OK, able to engage in ordinary conversation. Then he began to seem just a little confused by things. As the day wore on he became fairly obviously psychotic — imagining things and disagreeing with people who pointed out the reality. And by the evening this was compounded with some paranoia — belief that other people were acting against him, preventing him from leaving and going home (which was sort of true). The last I knew of it, he had become very distressed and angry, and I think he had to be sedated.
Postoperative psychosis is not uncommon, especially in elderly patients. It’s a step beyond the understandable confusion that can be caused by the unfamiliar hospital environment with its constant alarms going off, and the inevitable lack of sleep. It does not generally indicate the onset of chronic dementia, although it may be mistaken for dementia, and it typically resolves itself in days.
But in the case of this chap’s deteriorating mental state, words like “confusion”, “delirium” and “psychosis” seemed to be unsayable. It was common knowledge on the ward, public knowledge, that he’d had a pacemaker fitted. But as far as I could tell it remained unsaid, except perhaps in whispers, that he’d become confused, delirious and psychotic.
Also, as far as I could tell, he didn’t receive specific medication for psychosis, just general sedation when he became very distressed and difficult to manage. If his psychosis had been recognised and treated with a specific antipsychotic drug (of which there are many), I wondered whether he would have had to become so distressed that he ended up being treated in that way.
Another peculiarity of the way his case was managed was that early on he acquired a triangular warning sign above his bed showing a purple butterfly. He had a couple of other warning signs, too, and if you looked closely you could read exactly what they meant. But the purple butterfly was just a purple butterfly with no explanation. Whatever it meant was, evidently, unsayable.
What could it mean, though, a purple butterfly? If you guessed “away with the fairies” you’d be close. I’m not sure it’s the symbol I’d have chosen.
In fact the purple butterfly scheme started out as a national scheme to identify people in hospital who suffer from dementia or other memory problems. The scheme was later extended to include confusion in the absence of dementia, although this isn’t clear from its website.
So a purple butterfly was possibly appropriate in this chap’s case at an early stage when he seemed confused. Some people probably wouldn’t have known what it meant, however, and there was no text to explain. Some other people might have thought, wrongly, that the chap had dementia.
Labelling someone as having either a mysterious condition that can’t be spoken of, or as having an incurable degenerative disease that he hasn’t actually been diagnosed with definitely seems like promoting stigma to me.
Asking about pain
As I think back to the course of my own illness over those days in hospital, I remember that I had headaches after my operation, probably caused by some of the drugs used in the procedure. I was regularly asked whether I was in any pain and whether I wanted drugs to relieve it. This seems to be standard practice.
I remember also that I had been very scared during the heart attack, with a definite feeling that it had been a brush with death (although not a very close brush, as it turns out). As I recovered I suffered periods of depression, but I was never asked about that. This, too, seems to be standard practice — not to ask about psychological pain, even though there are well-established ways to relieve that too.
An appointment for follow-up sessions has now arrived, along with a questionnaire to assess depression. As you might expect, now that you’ve read this far, the questionnaire doesn’t say it’s to assess depression.
The logo at the top of the page says “2gether Making life better” but doesn’t mention that 2gether is a mental health trust.
The heading at the top says “IAPT Questionnaire 1” but doesn’t explain what IAPT means. (It means “Improving Access to Psychological Therapies”.)
The sub-heading says “PHQ-9” without explaining that either. (It just means “Patient Health Questionnaire” containing nine questions.) The PHQ-9 was originally developed by pharmaceutical company Pfizer Inc. to assess depression, around the time it started to market the antidepressant drug Sertaline. Pfizer makes the PHQ-9 freely available for anyone to use.
So in my treatment all mention of mental illness in general, depression and psychotherapy has been carefully avoided. The blurb says the questions are about my “health and general wellbeing”. If I didn’t have special knowledge of what the abbreviations mean, I’d be being screened for mental illness without my informed consent.
The management of psychiatric illness in acute hospital settings is helped by involving mental health professionals in the acute care environment, a practice known as psychiatric liaison. It wasn’t clear in the case of the chap with the pacemaker that mental health professionals were involved. Perhaps that was just because the situation developed quite rapidly. Maybe they turned up later.
However, a conversation I’d had previously in another ward made me wonder whether psychiatric liaison is always as effective as it could be. The person I was chatting with observed that psychiatric liaison is indeed helpful, but that mental health professionals were often “twitchy” (as she put it) about patient confidentiality, so that mental illness couldn’t easily be talked about, not even in a setting where the same patient’s physical illness can freely be talked about.
This conversation took place before I met the chap with the pacemaker, and the observation was unprompted. I wonder now whether a particular culture of “twitchy” mental health professionals in Gloucestershire could be the source of the reluctance I observed in speaking openly about mental health, or whether it’s just the general culture of the NHS.
Either way, it’s a culture that needs to change, in my opinion.
A newsletter from Gloucestershire’s mental health trust, 2gether, arrived while I was writing this post. The big headline on the front page is:
Tackling Stigma & Talking Mental Health
Inside, the article it refers to describes how employers across Gloucestershire are being encouraged to talk openly about mental health and tackle the stigma that surrounds it.
Great stuff! The employer that most needs to get the message is the NHS, I’d say. Parity of esteem begins at home.