Wish the nhs would stop creating new diagnoses!

[Boo1979]

For the last 22 years my eye screening results have all come back as either “ all clear “ or “ signs of early changes called background retinopathy”
This years has come back as “ very mild, early changes due to diabetes, called early background retinopathy”
Having spent many years working in the NHS, I can only wonder how long it took some bright spark to come up with that term and how many meetings it took to ratify it as a diagnostic category even tho it probably means exactly the same as the previous description!

 

[Scott-C]

There's been a lot of posts from newly dx'd in both the T1 and T2 worlds who have got "those" letters, and have been absolutely terrified by what it means.

It would be helpful if the boilerplate text went a bit further, and explained something along the lines of, "yes, it sounds terrifying, but at this stage, it means we're just keeping a closer eye on you, and you're really not going to be blind in the next month or two."

 

[DavidGrahamJones]

very mild, early changes due to diabetes, called early background retinopathy

"very mild, early changes due to diabetes, called early background retinopathy" vs "signs of early changes called background retinopathy"? I suppose "very mild" adds something to the description.

 

[kitedoc]

I think it is all a plot by the drug companies to find extra conditions to which they can then be allocat a drug treatment.
And perhaps the old dichotomy in persons applies to doctors ergo, the lumpers vs the splitters. Some called it mild or early . other very mild vs mild and so on. No wonder there is so much confusion. But goody goody for the drug company to now se if they can find drug which might prevent progression from the very early/mild stage !!
There was a point some years ago where there were so many terms to describe 'Chronic Fatigue Syndrome" that an international group was set up to defined what the syndrome was and give it that name.

 

[DCUKMod]

There's been a lot of posts from newly dx'd in both the T1 and T2 worlds who have got "those" letters, and have been absolutely terrified by what it means.

It would be helpful if the boilerplate text went a bit further, and explained something along the lines of, "yes, it sounds terrifying, but at this stage, it means we're just keeping a closer eye on you, and you're really not going to be blind in the next month or two."

Having had one of those special letters myself, I know how it feels, with the lack of detail or reassurance.

Having thought it through, my feeling is the template letter seems to assume sub-optimal control, and maybe it's acting as a nudge to buck-up.

I was able to find out, quickly, the clearer categorisation sent to our GPs, and also to have a follow up examination, about 2 weeks after the initial one (time elapsed was waiting for the initial letter, rather than a planned follow up), which showed nothing - clear.

My conclusion, they are playing safe.

 

[Engineer88]

Yes I've just had the same, definitely used as a push to improve control which I find laughable as I'm using a closed loop system and its the best control I've ever had. Seems to mean nothing to any medical professional

 

[Boo1979]

Yes I've just had the same, definitely used as a push to improve control which I find laughable as I'm using a closed loop system and its the best control I've ever had. Seems to mean nothing to any medical professional

What they also never bother to tell people is that background retinopathy is very much reversible - I was told on diagnosis 22 years ago that I already had background retinopathy and dire warnings with sounds of doom were made
Over all the intervening years my post check results have varied between “ clear” and “ signs of early changes called background retinopathy” being skewed around 3:1 in favour of the former

 

[JohnEGreen]

Yup I had it now I don't.