Saturday 11 April 2015

Careless Words: stock letters and diagnoses

Until three days ago I'd never heard of Diabetic Maculopathy.  I'd heard of Diabetic Retinopathy, having worked my backside off over the space of four years to keep my emerging retinopathy at bay by adopting life with an insulin pump, CGM, and lower GI diet.  But diabetic maculopathy was a term I'd never come across.  That was, before seeing it in the cold stock letter I now held in my shaking hand.  

"Your recent eye test showed evidence of diabetic maculopathy.  Diabetic maculopathy is a condition where there are changes to the blood vessels on the macula, the central part of the retina at the back of your eye."

It continued...

"It is important you attend this appointment to protect your eyesight.  The following can help reduce your risk of developing sight-threatening diabetic retinopathy in the future:

  • Aim to control your blood sugar levels as well as possible.
  • Make sure your blood pressure is monitored regularly
  • Go for regular diabetic checks."

After finishing my silent 'fuck you very much' head-rant about the control of my blood sugars (6.2% HbA1c), my blood pressure (102/60), and my regular diabetes appointments (minimum of 8 per year), I turned to  Dr. Google, having had no real explanation about what this letter - and new diagnosis - really meant.  My unsteady hands uncovered more and move information I could have lived a lifetime without knowing.  

I learned about the loss of central vision and inability to recognise faces. I read about injections to they eyeballs and about laser treatment ending in the loss of peripheral vision.  I imagined how this might all affect me. And I'm not ashamed to say that I wallowed in my post-diagnosis fog of confusion for several days.

Over the next three days I received that same letter three times, due to some kind of unwelcome admin error.

The fourth letter, from the specialist eye consultant within the actual eye department at the hospital I attend (as opposed to the community eye clinic where I have the eye tests done) told a somewhat different tale. 

"The retinal photography and OCT scans done when you were recently seen in the diabetic eye clinic showed there are changes related to your diabetes.  You do not need treatment at this time."

It continued...

"We will be sending you an appointment for repeat photographs and OCT scan in approximately three months."

This new letter made no mention of maculopathy, and gave no indication of any level of urgency to be seen.  Had I received only this letter, I would have been spared the many days - and two further letters - of worry and stress.  I would not have heard of the term maculopathy until a point at which I would have seen a professional face to face; a time when I can pose questions

As my good friend and shoulder-to-turn-to-after-that-letter, Laura, recently said, complications aren't just physical.  The psychological impact of being diagnosed with another condition, one which may impact your quality of life enormously, is not a dialogue appropriate for a stock letter.  The person selecting the drop-down options on my letter, while running through their daily work to-do list, probably had no idea of the impact it would have on me, or that the universal, impersonal stock letter using terms like 'sight-threatening' and 'treatment options' was a new and concerning diagnosis . They probably had no idea of the work, and money, I put into trying to manage this condition, and they probably have no idea that a driving license is key for my job, or that losing it could change the face of my career markedly.  They probably wouldn't know of my hopes that children may form part of my future, and that not recognising their faces, or that of my husband, is devastating to me.

The careless words used in the initial letter(sss...), which equated to a diagnosis of a sight-threatening condition, left a usually level-headed diabetic, perfectly familiar with complications in the past, in a significant amount of distress.  And yet, the follow-up information painted a somewhat different, less frightening picture.  I do still have some changes in my eyes; changes which need further assessment and monitoring.  But complications themselves I can live with, when I am armed with correct information and a feeling of control.  I have lived with retinopathy for years, and muclopathy is just a variation of this.  I can live with that.  I have always been the sort of person who responded best to knowledge about my condition, rather than threats of what may come. But I don't cope well when half-truths are delivered in such a careless and scare-mongering way.

My response to the NHS stock letter-gate is sealed and in the post. And normal life can resume.