October 16, 2017, by Brigitte Nerlich
Eyes, erosion and expertise
Over the last month or so I have been struggling with some eye problems. Several times I found myself in Eye Casualty and observed the sun rising over the Queen’s Medical Centre buildings. I am glad they exist just around the corner from where I live.
It took a long time to get the bottom of what now turns out to be corneal erosion syndrome, it seems…. In the rather painful process of discovery and diagnosis, I went through many hands and had lots of different advice from experts.
An optometrist said that the symptoms I had were just related to my long-standing blepharitis. A triage nurse said it was marginal keratitis. A junior doctor was puzzled until a senior doctor pointed to something and said “You see it’s pooling, so it’s band keratopathy”. A practice nurse first said it was a dry patch on the cornea and finally came to the conclusion it was corneal erosion syndrome. I am now about to see a consultant ophthalmic surgeon …. Let’s see what he has to say…. The advice I got so far from every expert I consulted was different from person to person and sometimes contradictory; and that is not surprising.
Expertise, time and technology
All the experts I saw had different levels of expertise, ranging from general medical expertise in the case of my GP, to expertise based on a degree in optometry, to rather specialised expertise in the case of the ophthalmic surgeon. Their pronouncement depended on the breadth and depth of their ‘knowledge’ and how mature and settled it was (junior vs senior etc.; nurse, doctor, surgeon…). This means expertise is related to time – time to learn and acquire knowledge. But that’s not all.
When experts interact with patients, another time factor creeps in. At the beginning of my journey through eye-land my symptoms and presentations were quite different to the end point. This means that expert advice was different along that time line.
Over time I also learned to ask better questions. That meant I got better answers. There also was more scope for dialogue over time (unless I was panicking, of course, and just wanted answers)…
And then there is technology and what one can call technology-assisted expertise. From GP to ophthalmic surgeon the equipment used to establish a diagnosis obviously changed and became more sophisticated and thus the expert advice given. And of course, over time I also learned to talk about my experiences in a more expert way and to ask more expert questions.
Gaining understanding – but is it expertise?
As a patient, I had to try and triangulate all the different expert opinions and types of advice that I got and find my way through this hierarchy and maze of expert advice.
As you can imagine, I started to read up on everything from blepharitis and dry eye to corneal abrasions etc etc. and build up a picture of what was going on. I had to fill my information/knowledge ‘deficits’ pretty quick. On the way I also built up some expectations.
From what I read, I expected for example to be given some sort of oral analgesia. That didn’t happen. I also expected to be given some antibiotics. Again, that didn’t happen. In the end, I dared to ask the last nurse I saw, with whom I had struck up some good rapport, about that. I didn’t ‘demand’ antibiotics (I know that this is a big no no!), but I said I was just curious. The nurse laughingly said that unless I wanted to go swimming and introduce some nasty beasties to my eyes, antibiotics were not necessary at this stage, despite what I had read on the internet (and I had, in my defence, read stuff in ophthalmology journals too).
This then made me think about antibiotics and all the anti-antibiotics talk that is now all the rage – for a very good reasons (i.e. drug resistant infections). Many expert academic articles dealing with antimicrobial resistance talk about which types of people expect to be given antibiotics by doctors/experts, when and how and where, such as in this study on cold and flu. But I haven’t yet seen any studies on this topic taking into account the difficult issue of wannabe ‘lay experts’ like me, as far as I can make out.
Professional and lay expertise
There are some ethnographic/linguistic studies looking at the interaction between professional and lay expertise in patient-doctor encounters. One study “looked at the ways in which physicians acknowledge and utilize lay expertise in the discourse of medical encounters” for example and found the following: “in a children’s disability clinic, families who display lay expertise about the condition of their children were able to move the discourse toward more collaborative decision-making, while families who do not display what physicians deem an appropriate lay expertise concerning their children’s condition had medical encounters with a traditionally asymmetric discourse”. That’s interesting. I wonder what counts as ‘appropriate lay expertise’.
I also wonder whether literature on antibiotic demand can look beyond just colds and flu and the ‘antibiotics don’t cure viruses’ discourse and look at professional and lay expert discourse on antibiotics in a wider range of illnesses, contexts and encounters. Perhaps there are already studies out there, who knows? The experts, I suppose.
PS: 15 December: After several more visits to eye casualty, I finally got a diagnosis, just for Christmas, so to speak: Map-D0t-Fingerprint Dystrophy. Great! Good info here by RNIB. Let’s hope there is no flare up over Xmas for my sake, for my family’s sake and for the NHS’s sake! (Oh and I finally got antibiotics!!!)
PS 5 May, 2018: It’s now a year since my first ‘foreign object sensation’. I had some more flare ups, more trips to eye casualty etc. I had debridement in my left eye 8 weeks ago, which means taking off the diseased epithelium and letting it regrow. Lots of antibiotics. It seems to hold, so 6 weeks of normal life. I was also told that I didn’t have superficial punctate keratitis, which I didn’t know I wasn’t suppose to have!
Yesterday had another episode, and so it was back to eye casualty, just before the nice bank holiday weekend. The doc said that the left eye was very dry, which is unfathomable with all the lubrication I do. Anyway, he put in a punctal plug to prevent tears from draining away. I still have a little discomfort from that but hoping for the best. I also got a new set of more expensive hydrating drops and replaced Lacrilube with Vitapos ointment, as Lacrilube is no longer manufactured. I got new instructions for lid hygiene too (not blephasol, not baby shampoo, not saline, but tea tree oil). And finally, the doc and I had a short discussion about Omega 3 and recent epidemiological and RCT research regarding its effectiveness in preventing dry eye. I am still supposed to take it. On his advice, I am still taking Omega , as well as Omega 7 (which he didn’t know about) which seems to lubricate at least some parts of my body. It could also just be a placebo, of course.
PS 14 May: After another failed debridement, I am now on the last rung of the therapeutic ladder: alcohol delamination…(there is also laser treatment PTK but I suppose that’s too expensive; reassuringly RCTs seem to have shown that in delamination is just as good as PKT…)
I got the delamination done June, and so far, we are now 2021 it’s holding. But I still lubricate every two hours and put the ointment in at night and do hot compresses and lid massage every morning and night.
Image: By André from Amsterdam, The Netherlands (kist uit de 1ste eeuw na Chr.) [CC BY-SA 2.0 (https://creativecommons.org/licenses/by-sa/2.0)], via Wikimedia Commons