Letter from the doctor: can you understand this awful jargon?

An Agony Column email from Emma in Gloucestershire, England brought this pearl of gobbledegook to my attention this week…what are these doctors on? Read on and be gobsmacked…

Dear Suze

chickenpox and shingles

Having an attack of shingles is no joke – but the letter warning patients about it is.

My mum has just turned 70 and received an invitation from her GP doctor’s surgery (family doctor’s office) to go get a jab to help prevent shingles. The first paragraph was plain enough and referred readers to the enclosed leaflet produced by the UK’s National Health Service (NHS), which was also plain enough and explained everything well.

The rest of the letter, though, is unbelievable…

How on earth could the average 70 year-old be expected to understand the following? I only just about understood it because I work in a pharmacy. But for someone not used to medical terminology? Your mum who worked as a school dinner lady (as mine did?) Your Uncle Geoff who was a delivery driver and is now a prize-winning darts player? Sheesh! Here’s how it went…(verbatim)

Shingles is caused by the human herpesvirus-3 (HHV-3). Primary infection usually occures in childhood, producing chickenpox (varicella) although it can be subclinical. After this the virus lies dormant in the sensory nervous system in the geniculate, trigeminal or dorsal root ganglia. It may lie dormant for many years or many decades, kept in check by the immune system before flaring up in a single dermatome segment.

When this happens, the virus travels down the affected nerve over a period of 3 to 4 days, causing perineural and intraneural inflammation along the way. There is not always a clear reason for a flare-up but associations include ageing (most patients are over 50 years old), immunosuppressive illness, or psychological or physical trauma.

However we do appreciate that, you may not want this vaccine and would prefer not to receive any more more invites, if that is so please complete and and return the slip below.

This is enough to make anyone throw the letter into the garbage where it belongs.

Can you honestly see the average 70-year-old (or 40-year-old for that matter) wading through Google to find out what those terms mean? Can you blame them for not bothering?

OK, doctors are busy and don’t have time to think about their writing

(NB: the links inserted above are to help you understand WTF the terms shown in the letter mean. Such links were not provided in her mum’s original letter.) As someone who has been spending a number of hours per week as a voluntary worker in an NHS hospital hanging around doctors and nurses, like Emma I just about understood what the jargon meant and of course I know how busy GPs (family doctors) in the UK are so don’t expect them to take too much time out to work on the wording of a mere patient letter.

But…

If you want to make it a humanitarian argument, how many very painful cases of shingles could be prevented by explaining how awful that disease is in terms everyone can understand, rather than this junk which is likely to go straight over people’s heads? By doing the former they will persuade more patients to go in and have the jab (it costs patients nothing in the UK) and so avoid the severe pain shingles causes.

If you want to make it a financial argument, by vaccinating people against shingles at whatever that costs the NHS per shot is probably much cheaper than putting them on the anti-viral medication that can help reduce the symptoms of shingles but only if started right away at the first sign of the disease. Costs would also be fewer in terms of pain relief medication dispensed, treatment for any secondary problems like a bacterial infection, and time taken up in related GP appointments.

One way or another these medics need to start writing in English, not QuackSpeak

From time to time I do mini-workshops for senior nurses in hospitals – usually in their lunch breaks if they get one – to help them to write patient information. Much such information in the UK is generic within the NHS, but quite often there is a need for a patient leaflet specific to that particular hospital.

We start out the workshop by role-playing with each nurse sitting at the kitchen table explaining to Auntie Christine, who’s going into hospital tomorrow for minor surgery, what a cannula is and why she needs one in her hand. They have to write this down as they would say it.

To begin with, they drop the jargon completely and it’s wonderful to see. After the first two or three sentences though, jargon begins to creep in and by the time we get to the last line we’re looking at something like “and that enables us to administer all the necessary medications in addition to providing a conduit for saline, plus a means of extracting blood samples at any time” … etc.

There’s a long, hard road to follow before medics can write properly for patients

…and knowing how much else they have on their plates we’re not anywhere near our destination yet. I help where I can at my local hospital and often do help edit patient information they put out. I wish there could be another “me” on hand to help other hospitals do the same.

In the meantime here is how I would have translated Emma’s mum’s letter

Shingles is caused by the human Chickenpox virus that people usually get in childhood. Most children have the full-blown disease but in some it can occur without showing any symptoms. After this the virus lies dormant in your nervous system. It may lie dormant for many years or many decades, kept in check by the immune system, before flaring up in a single section of your skin stemming from one particular nerve that comes out of  your spine. 

When this happens, the virus travels down the affected nerve over a period of 3 to 4 days, causing inflammation along the way both to the nerve itself and to tissues nearby. There is not always a clear reason for flare-ups but these are more likely due to aging (most patients are over 50 years old), illnesses that affect and supress the immune system, plus psychological or physical trauma.

Nerve pain can be very unpleasant indeed and the pain caused by shingles can be severe and quite long-lasting. The vaccine does not guarantee that you won’t get the disease, but if you do get it the symptoms are likely to be much milder. However we do appreciate that you may not want this vaccine and would prefer not to receive any more invites. If that is so please complete and and return the slip below.

What are your views about the letters you receive from your healthcare providers?

Are they clear and understandable for a non-medical audience? If not, how do you think they could be improved? Please share your thoughts!

 

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