One of the debates which seems to rear its pretty little head in our screening programme from time to time is the issue of how much information we pass on to patients in the clinic. Needless to say, we don’t give out results on the day, but most of my colleagues, myself included, like to show patients their photos and give them an initial impression.

On occasion, however, this causes problems. The most common complaint comes from patients who were told by the screener that there were no obvious problems, but then receive the results letter stating that they have background retinopathy. In reality, this can happen very easily: a set of photos which appear clear at first glance may very well hide a single microaneurysm which is only visible upon close inspection and/or manipulation of the images. To a screener, that’s not a big deal, but to a patient who was expecting the all-clear, it’s a disaster and an outrage. And they’re straight on the phone to tell us so.

As a result, we go to great lengths to stress to patients that we can’t be certain of anything until the photos are studied in more detail. My personal modus operandi when faced with a set of pictures which look clear, is to tell the patient that I don’t see any immediately obvious problems, but that the changes we’re looking for can be very tiny, and are not always visible until we study the images more closely. I then go on to tell them that if we do find anything, in all probability it will just be a bit of background retinopathy. I then explain what the term means.

For me, that last bit is key. A lot of our complaints come from people who lack the basic facts about retinopathy, and see any positive result as the death knell for their sight. Our standard results letter for R1 actually includes a line informing the patient that it doesn’t mean they’re going blind. That might seem like overkill, but it came about because we were getting regular phone calls from patients with background retinopathy who were asking just that. When you look at it in that context, therefore, it’s not surprising that someone who was expecting the all-clear immediately panics when told they have R1.

So my tactic is to pre-empt any bad news by explaining what background retinopathy is. If a patient understands the nature of the condition, they’re not going to suffer a panic attack when told they have it. It occasionally seems laborious to go through the ins and outs of R1 whilst looking at the flawless pictures of a patient with perfect diabetic control who’s had the all-clear for three years running, but if it spares them a bit of stress in the future (and saves us from an irate phone call), it’s well worth the effort.

In addition, on those rarer occasions when I spot something which is likely to lead to a referral, I like to prepare the patient for that eventuality. It can be a fine line between preparing a patient and panicking them, so we need to tread carefully, but we’ve had instances in the past where patients with R2 and even R3 have failed to turn up for appointments at the local eye hospital because the screener said nothing to them at the time, and they assumed it wasn’t important. I feel, therefore, that we should be emphasising the importance of attending any future appointment that might be sent to them, whilst at the same time reassuring the patient that their condition is treatable, so as not to cause worry.

Unfortunately, there will always be a small percentage of people who only hear what they want to hear. Selective memory is the bane of the healthcare professional. And no matter how carefully worded your information is, there will always be patients who swear blind a few weeks later that the screener gave them a cast iron guarantee of R0/M0 with no possibility of error.

Which is why I think we should ignore them. Every time we receive a complaint, we have another programme-wide debate in which someone proposes that we stop showing patients their photos and refuse to comment on any likely outcome. It’s been said that a patient going for breast-screening or a cervical smear wouldn’t expect the nurse to give them an idea of the result on the day - they accept that they wait for a letter. So why should retinopathy screening be any different?

Well, I’ll tell you. It’s because for 99% of people it’s the most beneficial part of screening. I don’t know who’s to blame for people’s ignorance about diabetes – GPs, nurses or the patients themselves – but I see patients all the time who have no idea what they’re being screened for. Some even say to me “I don’t know if you need to know, but I’m diabetic”. Others react with surprise when I tell them that their diabetic control (or lack of it) can actually affect their eyes.

By telling the patients nothing, we might stop the odd complaint, but we’ll also lose a golden opportunity for education. Those five minutes with a screener can make all the difference to a patient’s knowledge of their own condition, and many of my most satisfied customers have been those who learned something of interest during the appointment. I’ve seen countless patients who sheepishly ask “So what are you actually looking for..?”, and leave enlightened, reassured and, above all, grateful for the information they receive. It would be a tragedy to lose that for the sake of the few who like to complain.

In this case, ignorance isn’t bliss and it’s knowledge that makes people happy. If we stop showing patients their photos and giving feedback on what we can see, that’s when they’ll really have something to complain about.