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Changes to Retinopathy testing times

lucylocket61

lucylocket61

Expert
Messages
6,394
Location
Wrexham
Type of diabetes
Type 2
Treatment type
Diet only
While I was at the DESMOND course yesterday they said that the NHS will be changing the frequency of retinopathy tests. They will be every 2 years in well controlled Diabetics.

I asked how they will know which one are well controlled as the checks on control are only once a year if you dont have a meter, so you wont know if you need an eye check or if your diabetes is under control. They didnt answer that one.

Then I asked how, without either a HbA1c test or meter, someone knows if their Diabetes is under control. They said we would get thirsty, lose weight and pee a lot. That would indicate our diabetes is progressing.

Si I said, "Thats a relief (no sarcasm, honest), what about those of us here who didnt have any symptoms before diagnosis (3 of us)? How will we know? She said the DSN will pick it up in our annual HbA1c test.

I asked if that was because Diabetes type 2 is a very slowly progressing condition so waiting for a year wont be a problem. She answered that for some people, diabetes can progress quickly, so to be aware of my symptoms............aaarggghhhh!!!

Then they discussed the importance of picking up Diabetes and treating and monitoring it quickly and early to avoid future complications.

I felt as if I was in a twilight zone of illogicallity. :crazy:
 
Re: Changes to Retinopthy testing times

lucylocket61 said:
While I was at the DESMOND course yesterday they said that the NHS will be changing the frequency of retinopathy tests. They will be every 2 years in well controlled Diabetics.

I asked how they will know which one are well controlled as the checks on control are only once a year if you dont have a meter, so you wont know if you need an eye check or if your diabetes is under control. They didnt answer that one.

Then I asked how, without either a HbA1c test or meter, someone knows if their Diabetes is under control. They said we would get thirsty, lose weight and pee a lot. That would indicate our diabetes is progressing.

Si I said, "Thats a relief (no sarcasm, honest), what about those of us here who didnt have any symptoms before diagnosis (3 of us)? How will we know? She said the DSN will pick it up in our annual HbA1c test.

I asked if that was because Diabetes type 2 is a very slowly progressing condition so waiting for a year wont be a problem. She answered that for some people, diabetes can progress quickly, so to be aware of my symptoms............aaarggghhhh!!!

Then they discussed the importance of picking up Diabetes and treating and monitoring it quickly and early to avoid future complications.

I felt as if I was in a twilight zone of illogicallity. :crazy:
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Welcome to the twiligh zone Lucy! Yes exactly I couldn't agree more. The problem is that they actually believe what they say.

The problem with many nurses is that they tend to just accept what they are told and keep reiteraing it whatever you say.
Like the one I encountered last week who kept trying to tell me that I should not have a fasting cholesterol test even though the doctor had ordered it and I was able to show her on the computer screen that the non-fasting test did not give all the required information. She kep on insisting that the Dr was wrong to ask for the test and that I should have checked with one of the Practice Nurses. All based on the fact she had been old that diabetics shouldn't fast.

I found it a surreal experience. best get used to it and learn no o accept logic.
I am sure that this is why some GPs are more than happy to leave all his nonsense tot heir nurses

The plot has been well and truly lost.
 
Re: Changes to Retinopthy testing times

Actually I remeber reading a study which showed that less frequen screening was equally effecive. I think the hospitals and eye clinics are overwhelmed with he numbers being referred to them as a result of the screenings.

if there is no money avilable to cope with this it just results in a sub-sandard service for everyone.
 
Re: Changes to Retinopthy testing times

Save a quid so you can lose a grand.... symptomatic of the epidemic methinks.
 
Re: Changes to Retinopthy testing times

Cowboyjim said:
Save a quid so you can lose a grand.... symptomatic of the epidemic methinks.
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EXactly Jim. hat is why I am not a supporter of DUK's 16 tests or whever many it is. In an ideal worl d maybe.
The treatment and support fo those sufferers idenified is not in place and in the current climate is not going to be.

I think diabetics are messed about enough - being sent hither and thither like parcels and treated as some sort of sub-species by the NHS. yes , I understand they may well want to collect data for the future treatment of the condition etc but I often think they forget that we are liable to be facing difficulties in our daily lives trying to cope with it . With very little help from the medical profession in many cases and wih positive hindrance in others.
 
I read that some people with good control develop it so testing every two years doesn't make sense although i'm still stumped as to how you develop retinopathy if your numbers are controlled for decades

Anyway , i I think its best to have it yearly even if you have to go private or to specsavers.
 
Hmmmmm

This is fairly worrying but now explains a bit as to why opticians such as Specsavers are investing in fairly expensive equpment to take photographs of the eye.

I wont be wonderfully happy unless I can have the eye scan done at least once a year. I've had background retinopathy off and on over the past few years. It usually clears with slightly better control but if I wasn't able to have the eye scan I would be none the wiser.
 
I agree... this is one of the few things that REALLY bothers me about DM... having had more than my share of exams and treatment for this and MD I can vouch for the efficacy only the experts can deliver. GPs and nurseys have a role, maybe opticians too but this is indeed worrying and will come back to bite us all... it goes against all logic let alone mercy.
 
Absolutely agree jim and catherine. I think the role of GPs in this is to ensure that HBA1Cs are provided for patients on a more regular basis. No one in my practice understands that the reason the diabetes consultant asked that I have an HBA1C every 3 months was to ensure that my bgs dd not creep up thus affecting my eyes.

Opicians will certainly be crucial but aagin only the informed will make use of them - or those who can afford it. Once again extremely shortsighted [no pun intended}.

I can't help feeling that if it was all coordinated and GPs and hospitals were not compeing for the same money patients would
benefit.
I have seen nothing in the new proposals for funding which would be likely o change the situation but would be interested o know if someone else has.
It seems unfortunate that just as improvements in treatments and outcomes are improving fewer patients are likely to bemnefit and more will be put at risk.
 
iHs said:
This is fairly worrying but now explains a bit as to why opticians such as Specsavers are investing in fairly expensive equpment to take photographs of the eye.
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Could well be they knew in advance of these changes. In fairness to Specsavers they now don't charge for this service as where before they did, 2 years is a very long time to wait and I would urge everyone to get them checked yearly if possible.
 
I've just been told that I have Background Retinopathy, but my HbA1c says that I have good control. I wouldn't like to go 2 years between test and not know that it has cleared(hopefully) or worsened. I test still if I have anything new to eat and quite often test for a day to check that I'm still okay to eat whatever and know that my levels are pretty constant and don't have swings. I also had no symptoms when diagnosed. Things certainly look bleak for anyone that takes the NHS word as gospel. :cry:

Ann
 
Ann19 said:
I've just been told that I have Background Retinopathy, but my HbA1c says that I have good control. I wouldn't like to go 2 years between test and not know that it has cleared(hopefully) or worsened. I test still if I have anything new to eat and quite often test for a day to check that I'm still okay to eat whatever and know that my levels are pretty constant and don't have swings. I also had no symptoms when diagnosed. Things certainly look bleak for anyone that takes the NHS word as gospel. :cry:

Ann
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I've not seen or heard of these changes apart from what Lucy wrote above, however as you now have Background Retinopathy I'd be very surprised if you were one of those expected to wait two years as they would want to keep a close eye (no pun intended) on things from hereon........although please don't take my word on this but it would seem the most sensible thing to do!
 
I'll be on the phone to them next year if I haven't heard anything from them! Thankfully with all the folks on this site I know a lot more about Diabetes than if I'd taken the word of the team doing my Desmond course, I can't help but wonder how the people who don't have internet access and find this site are progressing if they get the usual bad advice from the NHS.

Ann
 
lucylocket61 said:
sorry Catherinecherub, I was answering Noblehead and didnt spot your link :oops:
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Sorry to you both as I did miss Catherine's link. I see it does say that those who currently have retinopathy problems as with Ann19 will not be included in the 2 year review which is some relieve but still disgraceful for the rest of you type 2's.
 
Two years is a long time in retinopathy! Two years ago both my eyes were background /pre prolif only, now I've had laser on both due to active proliferation and one in particular deteriorated very rapidly going from moderate pre prolif to sight threatening advanced PDR and vitreous haemmorhage needing a vitrectomy within the space of less than six months - and that was with laser in that time too.

Once this disease gets on a roll, it can become very aggressive very quickly particularly if bg improvments have been made rapidly in the preceeding period. This is yet another clear example of where the NHS can't cope with the sheer numbers of diabetics and associated problems. Well it's only gonna get worse! It does not take very long to take a photo of someone's eye and for someone to grade it, so why the move to two years. As someone else said probably because they can't cope with the influx of referrals to the eye clinic. well that's like leaving your washing on the line in the rain cos you aint got any room on the radiators inside.
 
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