And you wonder why I'm sceptical on matters medical?

One of the (many) things my ex wife used to criticise me about was that I was sceptical about, well, almost everything. Ever since I was a child I have been wary of believing what others tell me; there are dark episodes in my past that may at least partly explain that.The fact is, I do have an ‘enquiring mind’. I don't like being told something, and then being told to believe it ‘because I say so’. I’m awkward; I’m probably somewhat ‘on the spectrum’; but I believe that I should be able to understand almost anything, if the person I’m listening to can communicate effectively, and that I should also be able to satisfy myself that what they are saying is, in fact, correct. If they can't, and I can't, I won't trust them.

I’ve therefore earned a reputation for being sceptical on, among other matters, medical topics. Some may think that I’ve developed this attitude only in response to events in the last ten years or so, but that’s not the case at all: I have had my concerns about medical diagnoses for all of my adult life.

***

The first adult encounter I had with a doctor occurred in 1978; it was in the summer vacation after my second year at University. I was working in a petrol station in Tottenham, and living a few miles away, when I started to develop a pain in my left shoulder. I went to see the GP, who decided it was a joint issue and prescribed something like Deep Heat to rub into it. 

I rubbed it in and it made no difference. Things got worse, in fact: I started to have bad headaches, developed abdominal pain, lost my appetite and actually became quite ill. A further trip to the same GP resulted in a diagnosis of hepatitis, and advice to eat a fat free diet and rest.

I did as best as a 19-year-old could to follow his advice, but didn’t get any better. I was unable to work, and my throat became unbearably sore; eventually, I managed to get a home visit from another GP. He took some blood tests and these revealed I had glandular fever; I was then allowed to eat a load of things I’d been told I couldn’t eat because of the hepatitis, and gradually regained my strength and recovered. 

I never got over feeling rather let down by the first GP; bearing in mind my age at the time - spot on that for glandular fever - why didn’t he consider that as a possibility? Why did the second doctor do tests that the first one didn’t? Why didn’t they both approach my issues the same way?

***

Then, in my twenties, I had few encounters with doctors; I think that’s quite usual. In fact I had few encounters with them on my own account until my late fifties: most dealings in my working years were in connection with a family member or partner, with only one exception, my back.

I did office work - IT programming and management - for 36 years of my life, up to six years ago. For perhaps twelve of those years I drove to and from the office, rather than using public transport or walking; in one job, in my thirties, my daily routine involved  sometimes walking less than a couple of hundred yards a day. As a consequence, at one point I could barely walk, my back locked up and became extremely painful.

I was perhaps lucky in having private health insurance in that job. I went to the GP, who arranged for me to be seen, privately. X-rays and other tests were performed, no doubt at considerable expense, which, apparently, showed that my back was ‘locked up’. They could , I was told, consider surgery, but they couldn’t be sure it would help.

To say I was frustrated was an understatement: I could have told them all they had told me. 

A neighbour suggested I should see an osteopath, which I did. Over the course of a few months I had several appointments with him, and, by making a few lifestyle changes he suggested (walk more, sit less), I overcame my immobility. I’ve continued to see an osteopath every couple of months ever since, and - now at twice the age I was when I first had back trouble - I now get very few such problems.

But why didn’t a GP, or medical specialist, tell me that all I needed to do was to change my lifestyle and exercise a bit?

(I’ve lately wondered whether, after all of the Covid lockdowns and ‘working from home’, the NHS might be in line for a deluge of back complaints around 2023/24…)

***

At the time I had that back trouble I worked in database software support. I was one of a team who would try to solve customers’ problems with the company’s database product; we’d spend all our working time seemingly transfixed by our screens and microfiche readers. Our main working tool was a computer system, PRISM: this recorded all problems that customers had ever reported with our product, and what was needed to solve them. 

It was when my then wife was in hospital for the birth of our son in 1991 that I realised the medical profession didn’t have anything like PRISM (and still doesn't, as far as I know). My wife had been given some drug or other but it had not had the expected effects; the doctors and midwives were mystified. They’d not seen anything like it before, and seemingly didn’t know what to do until a consultant came and reviewed her records. He decided an emergency caesarian was called for. 

At the time I was rather amazed that knowledge sharing in the medical world was so poor: patients’ lives depended upon one individual in the right place having the right knowledge, or taking action to access it from, say, a book. There was no means for a medic to look up the drug on a computer and find out others’ experiences with it, such as what might cause it not to work or to work strangely. There was no way for them to benefit from the knowledge of colleagues working in similar fields at different locations - something that was critical and invaluable for us working on our database problems.  

I went to the hospital canteen (well, NAAFI, it was a military hospital) while the caesarian was happening, and, stirring my tea, I realised that every medic is, in fact, a very isolated individual. Patients are at risk from any gaps in their knowledge, or misunderstandings they may have. Doctors tend not to work in and across teams as widely as those involved is the pattern in other problem diagnosis work; arguably, the medical profession has failed to keep  up with the development of techniques and standards - like ISO9000 - that are commonplace in technological industries.

***

A short while after our son was born my wife had another challenging medical experience: postnatal depression. The local health visitor was very helpful, she involved the GP who referred my wife to a (private) clinic, where she was treated very well for several weeks - at, no doubt, significant cost. On discharge she was prescribed some antidepressant tablets - Prozac - which she took as recommended; these were, it could be said, rather life-changing. We weren’t told that these tablets had only been in general use since 1988.  Before she’d had our son she was a nervous driver, and would only drive as far as Guildford, ten miles away. Six months after discharge she was happy to drive on the M25 to the other side of London in the rush hour.  Depression was no longer her, or our, problem.

The doctors did try to reduce her dosage of Prozac over time, but each time she became nervous, and decided that no, she didn’t want to cut down the medication. After two years her confidence, which I had initially welcomed, began to affect our relationship; it was as if she could not see risks in certain behaviour. She spent without considering what we could afford, our finances became stretched: I became more and more worried, she didn’t, and she’d become aggressive with me when I tried to explain to her that we couldn’t take the risks that she wanted to. She’d never been aggressive before starting on the tablets. 

This continued while our son grew up. After she’d been on the tablets for about ten years the doctors changed her medication to Seroxat, a different antidepressant. Her behaviour didn’t change though. I once went along with her to a GP ‘prescription review’ appointment, where the doctor did say to her that she shouldn’t be on antidepressants for life, but she was still of the view that the tablets kept her ‘happy’, and that she wasn’t going to come off them - she couldn’t face being ‘unhappy’. The doctor didn’t enquire about any effects the tablets might be having on her behaviour or our relationship, which surprised me; at the time we were very much in debt. I was extremely disillusioned, and, if prompted, I might have explained this. In terms of saving our relationship, this was an opportunity missed.

Our life continued in this vein for another few years. We had some horrible arguments; I once went to work with a black eye; things were so bad, I was only aware of it when a colleague pointed it out. A month later I decided I’d had enough and walked out. My wife hadn’t expected this; moreover, it became clear she thought I would go back after a week or so, and was puzzled when I didn’t. She had a ‘cup half full’ view of every situation, no matter how severe. 

I’ve since found out that doctors have observed that long term use of antidepressants can have repercussions: beyond two years they are, it seems, unlikely to resolve the cause of the patient’s problems, and there are problems with using them too much. Aggression is a noted characteristic of some users. There are other, non-pharmaceutical treatments (relating to lifestyle and exercise) that are reported to help resolve depression and might have helped my ex wife, but she wasn’t prepared to try them. The GPs never attempted to make her. 

Ten years after our divorce, as far as I know she is still on Seroxat, and still behaving quite irresponsibly. My sympathies are with her family and friends. 

References

1. Long-term use of antidepressants could cause permanent damage, doctors warn, Sky News, 2019.

https://news.sky.com/story/long-term-use-of-antidepressants-could-cause-permanent-damage-doctors-warn-11688430

2. Paroxetine—The Antidepressant from Hell? Probably Not, But Caution Required, Psychopharmacol Bull. 2016 Mar 1; 46(1): 77–104.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5044489/

3. Do Antidepressants Increase Violent Behavior? By Remy Melina, January 12, 2011 Livescience.com, https://www.livescience.com/32934-do-antidepressants-increase-violent-behavior-111102html.html

4. 9 Alternatives to Antidepressants, Texas Addiction Treatment Centers, July 23, 2019. 

https://novarecoverycenter.com/drug-use/9-alternatives-to-antidepressants/#h-9-alternatives-to-antidepressants

***

Another, probably unrelated, medical issue from which my ex wife suffered, a couple of years after the birth of our son, involved gallstones. As with the depression, our GP referred her to a private hospital who suggested that keyhole surgery to remove her gall-bladder was appropriate, and it was, we were told, quite a normal thing. We weren’t told that such techniques had only been in use in the UK for a couple of years.

The surgery went ahead and indeed my wife seemingly recovered: the stomach pains she had been enduring were no more, we were able to get on with our lives. Or so we thought. 

A couple of months after the operation my wife began to experience ‘problems’ - basically, rather too often, she needed to get to the loo very quickly. Perhaps once a week she would experience a total loss of bowel control; not something that was at all pleasant - either for her, or for those around her. 

We went back to see the GP, who referred us for more - private - tests; at the time, we did not connect these issues to the gall-bladder operation. It did, however, cross my mind that quite a number of hospitals, surgeons and specialists were doing rather well from our company-provided health insurance.

These tests were inconclusive. We had to accept the risk of her having a bowel ‘experience’ as being part of her life; something, perhaps, that did not do much to make matters easier on the antidepressant front. She’d take spare underwear and a clean-up kit around with her in her handbag, and, on more than one occasion, I had to buy new clothes for her when we were out, as hers were soiled beyond use. 

Some ten years later she and I ran a BnB. One guest we had staying was a doctor, whose specialisation was something to do with gallbladders - quite how one can be fascinated with them I cannot imagine. Although he was not aware of my wife’s problems or history, when serving his breakfast one day I did mention to him that she had had keyhole surgery. ‘Damn problem’, he commented, rather in the fashion of a country gentleman.  ‘Keyhole surgery has made many more people apparently suitable for gallbladder removal. They’re never told that, like every other part of the body, the gall bladder has a function’. ‘What is that?’, I asked, interestedly, while he took a mouthful of cornflakes. ‘Stops your bowels emptying all over the floor’, he replied brusquely, before explaining that it's all about regulating the flow of bile into the digestive system. ‘If too much is squirted in at once an explosion will occur at the other end, and once a gallbladder is taken out it can’t be put back in’. I rather got the impression from his manner that he’d encountered patients with problems like my wife’s.  

I wonder whether the GP and surgeon she saw at the time of her operation thought that she might be at risk of such a problem? I was with her at one of the consultations and we were given the impression that the operation was standard, and that negative effects were quite unlikely.

 

The cynic in me still wonders whether the fees for the keyhole surgery were too much of an incentive for the medics to be wholly open about potential long-term effects. 

***  

All of the above episodes took place, or had at least started, by the early 1990s. Something happened in spring 1995 that, looking back, should have been no surprise. My father, then in his late sixties, was taken into the local hospital having had some sort of a neurological incident; he rapidly went downhill, the doctors (rather like those caring for my wife in the maternity hospital three and a half years earlier) seemed unable to explain what was happening. ‘An aneurism’, we were told. We were led to believe he was on the way out: he was taken to a side room in the ward and was, I recall, quite unresponsive. 

However, sometimes luck has a helpful hand in unhappy matters. A senior consultant spent a day a week at the hospital, and - apparently randomly - happened to wander into my father’s room. He read through my father’s notes, checked something, and then asked one of the entourage of housemen, students and nurses about a prescription drug. (I’m not sure what the drug was, it could have been a beta blocker). ‘He’s been on this for how long?’, he apparently exclaimed. ‘Take him off it right away, put him on something else, and see how his condition changes’.

At the time, my father had been diagnosed with high blood pressure for over fifteen years; it turned out he’d been on the same medication for all that time. Apparently long term use was not recommended - after two or three years at most a patient should have been moved to other medication. That’s why the consultant was so abrupt with the junior doctors.

Within days of his drugs being changed my father’s condition improved. He never recovered completely, however; there was some permanent neurological damage that affected his attention span, and mobility, for the rest of his life but my stepmother - who had started to think of life as a widow - was overjoyed. She had another ten years with him. 

That consultant, by the way, went on to become a Member of Parliament, elected on the single issue of the local hospital. Not all doctors appear to be so forthright, communicative and prepared to do the right thing. But why was the knowledge he had when he saw my father not available to others? Why had numerous GPs just continued my father’s prescriptions without checking the risks, and the junior hospital staff not even checked the medication my dad was taking even there in their hospital, against his symptoms? My father did have high blood pressure; he didn’t spend much time outdoors, he was probably deficient in vitamin D and consequently magnesium, even without stress related issues he had in his life that might have raised his blood pressure. Shouldn’t one of the several GPs that had been responsible for his prescriptions at least have checked how long it was safe for him to be on that medication, and put him on something else?.

***

In much more recent times - when Viv and I were living at our current address - I’ve developed another medical issue that yet again got me thinking about the effectiveness of our health system. The problem started when Viv was in hospital; I was working, so, in order to see her in the evening, I would get up early and drive to Stevenage station, leaving the car there to drive to the hospital after work, rather than travelling to London from the local station. 

One morning I was rushing my breakfast: a piece of toast went down, inadequately chewed. I felt something sticking in the wrong place inside me. I didn’t feel ill, just uncomfortable. I went in to work and had a normal day, going to see Viv in the evening as planned, but things weren’t right inside me. Indeed, the discomfort continued - perhaps intermittently - for several months: the feeling of something out of place at the bottom of my ribs. 

It was much later, when I was able to get time away from work, that I went to the GP, having first considered what had happened, the various sensations I felt, and whatever I could find in reference books or online. I explained to him that I had this feeling of discomfort, not burning, and thought that it might be a hiatus hernia.

He gave me a quick examination and told me the problem was excess acidity, and prescribed some tablets. 

Meanwhile I was still going to an osteopath. He suggested I try a few exercises involving a roller on the floor, stretching out my stomach.I did these, took the tablets the doctor had given me, and things improved, on-and-off. I stopped taking the tablets and thought I was ok.

A couple of years later the problems were still coming and going. The doctor referred me to a hospital to have a thing put down my gullet so the doctors could see inside me - not a comfortable experience, I can say. The report from this came back ‘a small ulcer, gastritis, and a small hiatus hernia’, and I was prescribed more tablets.

I stayed on the tablets to deal with the gastritis and ulcer - that, I knew, was important. For the hernia, the GP suggested I could have surgery - I declined. Further trips to the osteopath, and more strenuous exercises, have since got it under control, although it plays up from time to time. I am wiser, and, despite my ageing teeth, more careful to chew my food properly than I used to be. But I now, two years later, cannot get off the tablets; any attempt to stop triggers unpleasant acidity. I’m probably on them for life; I can only wonder whether the gastritis and ulcer were caused by me stopping the tablets the first time, and, if I’d just had guidance on how to resolve the hernia with stretching I might have never had the acidity problems. 

The tablets - omeprazole - are one of the most commonly prescribed drugs in the world. 15 million Americans are reported to take them regularly - about 5% of the population; according to a 2016 survey, 11% of UK adults take it or a similar drug regularly. Someone is making a good profit from it. 

References

1. Prescriptions Dispensed in the Community, England 2006 to 2016,  Prescribing and Medicines Team, NHS Digital, 2017. http://healthsurvey.hscic.gov.uk/media/63790/HSE2016-pres-med.pdf

  

***

I do have to say that I have had some most successful interactions with the medical profession; I’ve witnessed doctors work very efficiently in some environments. A&E teams, in particular, are exceptionally well organised and deserve all the praise they get. It seems to be the more mundane environments - the GP surgery, the outpatient clinic, the observation ward - where things can be a little unpredictable, and have not kept up with what I believe to be modern practice. (I suspect I could add the lecture theatre into that list, too.) 

I accept that there has, at times, to be something of a ‘try this’ approach to problem diagnosis of any sort (including in the medical sphere); the problem is that there must be follow up to check the results of what was tried, and that the risks or consequences of the trial need to be considered before it is started. Patients are people, after all, not laboratory experiments.

I’m happy to accept that a medically trained doctor, or surgeon, knows far more than me about medicine in general. However, there is one specific topic on which I am better qualified  than him: my personal medical history.  A doctor should know that I have followed my various health issues throughout my life, and, no matter what he sees on his notes, I have a memory that may well provide a more accurate record of an event than they do. Patients should be listened to and medical risks of treatments past and proposed carefully explained to them.

Moreover, having experienced what nearly happened to my father, I believe we should all be very concerned about the gaps in the knowledge and communication skills of some of those taking responsibility for the health of us and our loved ones; shouldn’t the medical profession, or ‘our NHS’, be doing more to ensure that essential knowledge is available to a doctor - of whatever grade - when the patient they are treating needs it to be? Who or what is more important - the safety of the patient or maintenance of the differing skill levels of members of the medical profession?