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Want to be taken off diabetes register.

VinnyJames

Well-Known Member
Messages
624
Location
Liverpool
Type of diabetes
Treatment type
Diet only
Hello all,

Am back after a 2 yr break from the forum.

Had my diabetes review yesterday which was 33 or 5.2%

That's 5 years now in remission.

This morning i had an appointment with the GP who diagnosed me but he refused to remove me from the register.

I have only ever had one hba1c result in the diabetic range in my life and because of this the GP has agreed to discuss my case at the surgery meeting with the other GPs.

I can't see any benefit to remaining on the register. If my blood sugars were to stray into diabetic territory in years to come I would know long before my surgery through self testing and I can also FEEL if they are too high......

It is so frustrating.
 
Hi Vinny,

Not sure why you feel it is so important to be removed ? If I was in your shoes then I would want to remain on the radar, if there was ever concern in the future that you may start to stray from the path then surely it's best to be picked up so that something could be done, ok so you already self test, and perhaps will know before the HbA1C but your team need to know your history so they can ensure appropriate care is in place should this ever happen.
 
@VinnyJames I sympathise with your views. You had a problem, you worked out what caused it, and therefore stopped doing it, no more problem. If you have a problem again, you can make a doctors appointment, remind them that you once had diabetic sugar levels, have a blood test and collect a scrip for metformin. In the meantime, why should a GP collect extra funding for a condition that his/her patient doesn't have and you pay extra for your holiday insurance etc.
Sally
 
One benefit of remaining on the register is continued access to eye screening
 
Boo1979 said:
One benefit of remaining on the register is continued access to eye screening
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That will continue even after removal from the register providing the GP uses the correct code. The in remission code will ensure he stays on the list for eye screening. The Diabetes Resolved code may not.
https://www.gp-update.co.uk/SM4/Mutable/Uploads/medialibrary/gp-update-handbook-au16-diabetes.pdf

Diabetes that ‘goes away’
Some people, given the diagnosis of diabetes, radically change their lifestyle, lose weight and their HbA1c drops out of the diabetic range. What do you do? There is little guidance on this, but bear the following in mind:
• They are at high risk of ‘relapsing’ and becoming diabetic again – in our practice we do an annual HbA1c to look for this (and BP, cholesterol, etc.).
• They continue to need retinal screening. In order to ensure they are called for this use the code ‘Diabetes in remission’ (C10P) NOT ‘Diabetes resolved’ (212H) as this latter code doesn’t trigger recall. Do note that ‘Diabetes in remission’ does NOT exempt them from QOF – but should they not be getting QOFstyle care anyway? (National Diabetes Retinal Screening Programme, 2014).
 
I have been taken off the register by my GP without him even telling me, and no discussion whatsoever until after the deed was done. He has, however, acknowledged that I am still at risk and has noted this on my records. This only happened a couple of weeks ago and I am still annoyed about it. I prefer to be on the register. It hasn't caused me any problems, and I regard it as some sort of safety net in the event of an emergency - I would get monitoring were I to end up in hospital or an ambulance. I am also worried of losing my current 6 monthly full blood tests that include cholesterol, lipids, liver & kidney functions, full blood counts and urine tests. I may be odd, but I do like to keep an eye on my own health and look out for any deteriorating trends. The HbA1c doesn't bother me at all. It is only there to keep my nurse happy, as I self test and know exactly how I am doing.
 
I asked what criteria was used to come off the register and was told it was impossible as it would be unethical. I did say others had been taken off the register but all I was told was I had excellent control. I strongly feel there should be universal guidelines. I don't see why I have to declare "I'm diabetic" when I've had normal readings for over 2 years.
 
One great advantage of being taken off the register - your Q-risk score will halve, or at least mine would.

As my removal was done recently but backdated to June 2014, I may ask my GP to re-do all my Q-risk scores from June 2014.
 
What register? Was unaware one existed..or do u mean just being recorded on your medical notes?
 
james11 said:
What register? Was unaware one existed..or do u mean just being recorded on your medical notes?
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I believe each practice has to have a register. I believe the data is sent off for audit for the CCG and other national places. My practice also has an "at risk" register, presumably also so data can be sent off to whomever wants it.
 
I was changed to Resolved last year.

That was after only 2 years of non-diabetic results, so after @VinnyJames has achieved 5 years as such I cannot see why he hasn’t (other than the often repeated complaint about completely different treatment from different NHS HCP’s)
 
Personally myself, I would want to stay on the register.
 
Sure that way they can hike up your life insurance and health insurance and disability insurance rates. I'd try and get off it.
" .. . the GP has agreed to discuss my case at the surgery meeting with the other GPs." Tell me you're kidding about that. Please. What "case"?
 
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This is an extremely important conversation. I say this as someone that in my own country (NZ) there is no resolution or remission, once a Type two - always a type two. I found out recently. (So I changed my forum status from prediabetes, or intermediate hyperglycemia, to T2D again.) (It hurt!) What really hurt was having my life insurance premiums at T2D levels. Big conversations with my GP about it. She told me this conversation was philosophical. As my insurance premium had tripled on the T2 diagnosis (as opposed to intermediate hyperglycemia, which is what I have had for three years plus) I told her I found it very practical indeed. The eye test was brought up. I love that you guys have different categories. And one that you can remain on getting eye tests as part of national health, even with resolution or remission. Well done UK.
 
Maybe as a first step if you haven't already got this is to ask to have your official NHS diabetes status changed to "Remission", or "Resolved", if you feel there is no chance of diabetes ever coming back.
 
@VinnyJames in the scenario of a car accident and you're left unconscious. How would you like the emergency team to treat you? As a diabetic or a none diabetic?


Personally I'd like my emergency team be able to access as much info as they can to treat me... correctly.
 
ickihun said:
in the scenario of a car accident and you're left unconscious. How would you like the emergency team to treat you? As a diabetic or a none diabetic?
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I can't answer for @VinnyJames , but posting on behalf of someone who has not shown any diabetic numbers or symptoms for over four years and takes no meds, please, None-diabetic, ie normal. What would you want them to do to you?
Sally
 
sally and james said:
I can't answer for @VinnyJames , but posting on behalf of someone who has not shown any diabetic numbers or symptoms for over four years and takes no meds, please, None-diabetic, ie normal. What would you want them to do to you?
Sally
Click to expand...
Too tired to reply. Sorry.
I will try tomorrow.

I'm finding it more and more difficult to explain to none diabetics what it's like for diabetics.
Or is it just me?
 
ickihun said:
Too tired to reply. Sorry.
Click to expand...
Agreed, I too am an early to bed and (usually) early to rise person. As I understand it, you are an insulin user and I'm truly sympathetic to the thought of nightmares, where you knocked unconscious by a passing bus, left on a hospital trolley, fed jelly babies when you need insulin and vice versa by well meaning but ill informed folk. However, on this thread we are talking about people who are on no meds, have got rid of all perceptible diabetes symptoms and are, in all respects "normal" and don't require special treatment in accident situations and will not become unconscious due to hypos or excess ketones.
Sally
 
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