I had an epiretinal membrane, something I’d never heard of; the doctors I know had never heard of it either. Yet paradoxically some five or six people I know have one. Some bit of me wonders uncharitably if it’s an invention by ophthalmologists, a new business line now that cataracts are done so quickly and easily.
My one symptom was difficulty reading with my left eye. The optician thought I had a cataract, so I was referred to the clinic that dealt with the “outer eye.” The “outer-eye ophthalmologist” told me that I didn’t have a cataract, but an epiretinal membrane. He didn’t tell me much about it but referred me to a retinal surgeon.
Nine months after my visit to the optician I saw the retinal surgeon. Before the visit I found one randomised trial of the operation to remove the membrane. Nobody was much improved, and some people were worse. Nobody was blinded, which is a risk, but unlikely to show up in a trial of a hundred or so patients. (I mentioned this trial to another retinal surgeon, who told me that this was a multicentre trial and that a series of single surgeons showed better results. I said, “Well they would, wouldn’t they? The implication is that there are single surgeons getting worse results than those in the trial.” He didn’t respond, and I reflected that I had no way of telling whether the surgeon who might operate on me would be good or bad.)
The retinal surgeon was honest with me: he told me that the results of the operation to remove the membrane were not great and that although people usually ended up with slightly better vision it probably wasn’t worth having the operation unless the symptoms bothered me. He said he divided people into three groups: those with severe symptoms who should have the operation; those with mild symptoms who shouldn’t; and people in the middle where the decision was unclear. I, like most people, was in the middle: it was for me to decide.
What he didn’t discuss and most people would have been horrified if he had was the cost, the cost not only in money but also in time (the staff’s and mine) and an inconvenience. Nor did he discuss the opportunity cost, the better things that the staff could be doing and that the money could be spent on. Nor did he explain to me until after I had decided to have the operation that after the operation I would develop a cataract within a year, whereas without the operation it might be 10 years or more. He didn’t add, but probably thought that, I might well be dead by then. I certainly thought it.
If he’d raised all this before the operation I would probably have decided against the operation. In retrospect I should have decided against anyway, but I didn’t. I was complicit in this poor decision.
On Christmas Eve I had an operation under general anaesthetic, 13 months after I went to the optician. It took some 50 minutes to peel off the membrane, but the surgeon also inserted a lens to avoid me needing another operation a year later. I spent four months with one eye short-sighted and one long-sighted, then I had a lens implanted in my right eye. This is the second time that I’ve been back to the eye clinic since that operation, and it turns out that I’ve been referred to the wrong clinic and must come again in three weeks after taking more eye drops.
What has been the cost of all this? I have to guess, but I’ve had two operations, the first of which lasted an hour and was complex; and I’ve had two lenses inserted. Together they must cost at least £10,000. Then I’ve been 10 times to the clinic at a cost of perhaps £500. The eye drops have cost perhaps £50. Although I’m at the clinic each time for two hours I’m usually seen for only about 10 minutes: staff time, including the operations, is probably not more than five hours. (I sent a long email suggesting how things might be better done and got a three-page letter back signed by the chief executive. I doubt that she wrote it, but it probably took somebody a couple of hours.)
There has been no direct monetary cost to me as I travel to the hospital for free using my Freedom Pass. But the operations took most of two days (I had long waits before the operation), and the visits to the clinics consume four hours each, partly because I can’t see properly after having eye drops inserted. Most of what I do these days I’m not paid for, but when I am paid I charge £1000 a day (cheap compared with McKinsey charging £3500 for people with much less experience), so the cost to me could have been £7000.
What are the benefits? They are small to non-existent: I may be able to see slightly better with my left eye, but I’m at a higher risk of retinal detachment.
Value, you’ll remember, is benefit over cost.
Has it been worth it? For the nation? certainly not. It may not have been a large cost, but it could have been better spent on education, housing, environmental improvement, or on something much more valuable within health care—like vaccination. The health staff have spent a lot of time achieving little, but they have been provided with “meaningful” and mostly well-paid employment—but they could have spent their time doing something much more meaningful. For me there has been tiny benefit with substantial cost in time and hassle.
I’d like to see a time when consultations about possible health interventions are not restricted to the purely clinical risks and benefits, but include a conversation on the value of the intervention not simply in financial terms (ideally with exact figures) but also in terms of the opportunity cost—what has been foregone and would could have been done with the time and money. Will that ever happen? To many—including presumably John Ruskin who argued “there is no wealth but life”—it would seem obscene, betraying the values of the NHS.
But if I’d had that conversation I wouldn’t have had the operation and wouldn’t have spent nearly two years shuttling backwards and forwards to hospital every couple of months.
Richard Smith was the editor of The BMJ until 2004.