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Think I'm being thrown out of the Club?

MrsA2

Expert
Messages
6,932
Type of diabetes
Type 2
Treatment type
Diet only
So yesterday had a phone call from admin at the GP surgery. Some months ago my optician wrote to GP and requested I be referred for retinopathy screening as I hadn't had any since being diagnosed in March 2020.
Admin was calling to say they we not going to refer me because the Diabetes Nurse, (who I met only once and after I had lost 3 stone and got my bg down to normal levels) had said on my record that I had "No clinical signs of diabetes" and therefore shouldn't be referred. Turns out the GP who initially phoned me with diagnosis in the first mad week of lockdown hadn't put on my record that I had diabetes, and the second GP I had a phone conversation with had only noted my cholesterol level, nothing about diabetes even though there was long discussion about how I should be seeing a DN, but the position was vacant at the time.
So according to them now, I am not and never was diabetic.

However I know from my meter, and from my lack of symptoms (better vision, less peeing) having changed to low carb that I am.
So, by controlling my bg and losing weight I seem to have shot myself in the foot and removed myself from any future tests, help or support from NHS.
If I try and argue that I have diabetes ( albeit in remission now) they are intimating that i am making it up, because neither doctor updated my record properly and the DN has refused to entertain the idea that I have managed to put myself into remission.
I didn't imagine the 2 telephone calls with different GPs but have no proof of what was said. Because I took action quickly and reduced my bg they won't recognise the one diabetic reading I had and I'm being made to feel hypochondriac for testing my own bg.

I don't want to eat carbs for months and/or put on the weight just to raise my hba1c again

Ideas/ suggestions please?
There no other surgery within easy distance.
 
MrsA2 said:
Ideas/ suggestions please?
Click to expand...

Your blood test results must be on your medical record. Request them, either separately or as part of a request for sight if your full medical records.

This is from this NHS website: https://diabetesmyway.nhs.uk/keeping-healthy/type-2-diabetes-remission/

‘What happens after remission?
At the moment there are no definite answers as to how long it will last or how it may affect your risk of developing diabetes in the future, but the results so far look very promising. What we do know is that achieving remission has huge benefits for your health. It lowers your blood glucose levels, reduces your blood pressure and your cholesterol levels, all of which will reduce your risk of developing the complications associated with diabetes.

Even when you are in remission it’s important to still attend your normal check-ups as part of your diabetes care and continue to maintain your weight loss.’

Combined would be grounds for a request (demand) to remain on the diabetes register.

And I also found this from a random CCG: https://www.berkshirewestccg.nhs.uk/media/1507/diabetes-201cin-remission201d-coding.pdf
 
I see from your sig that you were only 53 at diagnosis. I've read more and more posters on here who aren't now given a formal diagnosis when just over the threshold. GPS seem more willing to give it 3 months before giving you the label for life. Perhaps you dodged a diagnosis by being proactive
 
Dodged a diagnosis yes (which seems important to you going by other posts) but denied regular screening and monitoring.

Diabetes is not a switch. It is a scale. The diagnostic cutoffs are slightly arbitrary numbers on that scale, demonstrated by the fact is it not universally the same. They are selected by the point at which complications and side effects become more likely. Some people experience complications at lower levels.

Some may prefer no label, other prefer regular monitoring and screening to avoid health problems and worry less about labels.
 
HSSS said:
but denied regular screening and monitoring.
Click to expand...
Yes, that is the point. I am already partially sighted for other reasons and want to
a)do what I can to minimise further damage and
b) have regular checks to be able to handle problems as soon as possible
 
MrsA2 said:
Yes, that is the point. I am already partially sighted for other reasons and want to
a)do what I can to minimise further damage and
b) have regular checks to be able to handle problems as soon as possible
Click to expand...
I believe some branches of Specsavers are able to do the NHS style retinal screening, might be worth enquiring.
As for the rest of the checks, they are probably not worth bothering about, you can check your own feet and note your BMI.
That leaves the HbA1c test, you can probably get your doctor to agree to one in 6 months time.
 
Seems ridiculous to me to lose the care as lined out by the guidelines because of lousy record keeping. Yes, it may be possible to organise stuff outside the NHS, which may be better than nothing, but I'd only think of this as a last resort.
As for the diabetic eye screening, in my country you won't get it without doctors orders or paying a lot. And Specsavers doesn't do it here, but possibly things are different in the UK.
 
I paid (about £20 from memory) for a photographic image of my eyeball similar to the retinopathy screen mid way between nhs tests as I was scared by a finding of mild retinopathy. That and the subsequent nhs one were both clear but it was reassuring. So yes an alternative is there but I’d be fighting the poor record keeping to be on the nhs register, for this test and regular hba1c even though that too can be sourced privately. I can tickle my own feet though.
 
MrsA2 said:
@Goonergal Magic! I feel a strongly worded letter coming on. One has been going round in my head but this give me ammunition, and chapter and verse (sorry for mixed metaphors)
Click to expand...
This is deeply ironic. Every year I have to write to the Contact Officer for the East Anglian Diabetic Eye Screening service. I am called for a Screening and then receive a letter informing me no changes have occurred (in fact since 1983!) but they want to see me in 6 months time for a higher grade examination. I am basically talking to a computer. It seems outrageous that I have already pointed out several times that I would be unnecessarily taking a valuable slot from a needier patient, such as yourself. If you don't succeed with your GP's practice, you might try writing to the Practice Manager. It worked for me on more than 1 occasion!
I hope you win.
 
The information for health care professionals regarding diabetic eye screening says:-

‘Diabetes resolved’ patients
Once there is or has been a definite diagnosis of diabetes, excluding gestational diabetes, patients should be screened for diabetic retinopathy annually for life. Patients with a read code of ‘Diabetes resolved’ should therefore continue to be offered screening.
https://www.hct.nhs.uk/media/1227/d...mation-sheet-for-healthcare-professionals.pdf
​
The 'no clinical signs of diabetes' comment after your weightloss is therefore irrelevant to whether you need screening.

I would advise getting hold of your blood test result and then booking an appointment with one of the GPs you saw previously to discuss the situation. If you visited the GP with diabetic symptoms (which should be recorded in your notes), one blood test with diabetic levels should be enough for a diagnosis.


​
 
@MrsA2 - I had one diagnostic A1c, plus an elevated fasting glucose reading on file, then my next is back to 37, and never higher since. My records are marked "Diabetes Resolved", but I am still called for retinal screening annually. I don't receive foot checks (only ever had one), but I do have an annual A1c, which I am content with.

I'd keep going in your shoes.
 

I recently installed, and registered with, the NHS app.

It's a little bit of a faff because you have to upload a photo ID (e.g. driving licence, passport etc) and it also does a facial scan.

But, once you're on it, it has a huge amount of data including all your tests and their results.

Totally recommend it.
 

Most of that should be available online through your surgery without giving away quite so many of your personal details.

Also with the upcoming GPDPR exercise where all your records will be downloaded into a new NHS superdatabase you might want to be more circumspect.

https://www.limetreesurgery.nhs.uk/data-sharing-opt-out

From my surgery..

This exercise (which in fact is starting on September 1st) hasn't been especially well publicised which may trigger alarm bells in some.
 
That is appalling, and I hope you can confirm with them from the records of test results.
However, I was finally signed up for podiatry appointments after I was diagnosed as well as the annual eye checks, so in theory I go every 3 mths. There was a long break due to covid restrictions but they finally restarted this year. The podiatrist didn't check the nerves in my feet this time and so I asked about it - she informed me that my GP is paid to do those!
I wonder what he did with the money ...
 
Update: 8 weeks on, and 8 weeks after my written complaint was acknowledged, I've heard nothing so I contacted them today to be told I have a telephone appointment with the diabetes nurse next week...
What that means I don't know, I shall be listening with interest.
I do see that my online record has been updated yesterday with an HBa1c of 38 .... but I haven't had a blood test in 6 months and it hasn't linked to my previous ones so where that has come from I have no idea....
 
MrsA2 said:
I do see that my online record has been updated yesterday with an HBa1c of 38 .... but I haven't had a blood test in 6 months and it hasn't linked to my previous ones so where that has come from I have no idea....
Click to expand...
Make sure to take this up with them! It doesn't do to just make blood test results up out of thin air.
 
Definitely question this, I had someone else’s blood test results added to my record once! It was only during conversation and the fact that they had been tested for something I don’t have that a nurse realised the mistake. I bet this happens more often than you think.
 
My sneaky suspicion is they just copied my previous one in an attempt to distract from the earlier ones... but then that would be very sceptical of me wouldn't it?
 
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