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Diabetic Register - Any Choice?

R

rjgregory

Newbie
Messages
1
Type of diabetes
Type 2
Treatment type
Tablets (oral)
I am T2, and had a review today. HbA1c has been in normal range for a while after weight loss and plan is to come off Metformin gradually (2 tablets > 1 tablet > no tablets).
DN said I might come then off the Diabetic Register.

Searching forum it seems as if there is little consistency at GP practice level.
T2 posters report consistent HbA1c over several years, but either
  1. Still on register as ‘Diabetic’
  2. Marked as ‘Diabetes Resolved’
  3. Marked as ‘Diabetes in Remission’
For annuity purposes, it suits me to remain on the registry (at least “in remission”).
I also like the routine bloods and eye checks
Finally, it was Lifestyle that gave me T2 in the first place, so relapse is always a risk with me...

If your improvement took you into the normal HbA1c range, did you have a conversation about the Register?
Did you have a choice?
 
rjgregory said:
I am T2, and had a review today. HbA1c has been in normal range for a while after weight loss and plan is to come off Metformin gradually (2 tablets > 1 tablet > no tablets).
DN said I might come then off the Diabetic Register.

Searching forum it seems as if there is little consistency at GP practice level.
T2 posters report consistent HbA1c over several years, but either
  1. Still on register as ‘Diabetic’
  2. Marked as ‘Diabetes Resolved’
  3. Marked as ‘Diabetes in Remission’
For annuity purposes, it suits me to remain on the registry (at least “in remission”).
I also like the routine bloods and eye checks
Finally, it was Lifestyle that gave me T2 in the first place, so relapse is always a risk with me...

If your improvement took you into the normal HbA1c range, did you have a conversation about the Register?
Did you have a choice?
Click to expand...

My own status is "Diabetes Resolved". I still receive my eye screening and also have an agreement that I have at least an annual HbA1c, although my Doc is usually OK to add one in between if bloods are being drawn for other purposes.

In terms of any impaired life annuity, it is likely you would be asked to complete a form such as this. The forms usually ask if you have ever been diagnosed with x, y or z, then enquire about treatment regimes, rather than currrent status. Have a look: https://retirementhealthform.co.uk/Home/DownloadForm

I am not a financial advisor, although I have worked in major financial institutions, including in pricing and actuarial issues - hence my interest.
 
My GP decided to code me as Diabetes Resolved earlier this year, but has backdated it to June 2014 when I first had an HbA1c under 48. I have never been on meds. I had no choice. He just did it, and I would never have known had I not looked at my on-line records. I did mention it to him later. He said I no longer have diabetes so he is correct in marking me as such. I don't agree with him. I have since had a retinopathy screening, and have just been invited for my 6 monthly blood tests.

I found that having diabetes gave us a better annuity deal when we cashed in one of hubby's pensions a couple of years ago. I only had to declare it on the application form. There were no checks.

One thing I'm not happy about is that the VAT exemption on my self funded testing equipment, especially the Libre sensor, should strictly speaking no longer apply.
 
I don't ever want to be removed from a diabetes register or considered diabetes resolved because IMO the hormonal dysfunction that caused my T2 diabetes will always be there. I am at risk of relapse, which has already happened during the 9 years since diagnosis. My A1c was in the low 30s for a few years, now it's in the 70s. Relapse is a mix of factors within my control and beyond my control, not that it matters for the purpose of discussing this issue here.

I don't care what effect it has on my finances because I am more interested in lifelong good management of my health. Luckily it doesn't have much impact on that because as other have said, insurance companies have always asked about illnesses (even just symptoms) I have "ever" had.

In NZ, a GP can order an A1c test at any time without having to justify it, and I was getting them every 6 months long before diagnosis anyway, due to family history and my BMI. The same with retinal screening.

There are often diabetic screening services provided in the community for free at health expos, community events and even just in shopping malls now and then. the government funds these outreach exercises to increase early intervention. If it costs, say, $1,000 to have a stall at a festival for one day, the cost can be justified by catching one diabetic who would otherwise not be found, and the difference in treatment outcomes could save the government many thousands more than the $1k cost. Multiply that by 10 or 50 people and you can see why they do it.

So, even if I was to come off the register, I could still access free screening, that would lead to free diabetes care.
 
Bluetit1802 said:
My GP decided to code me as Diabetes Resolved earlier this year, but has backdated it to June 2014 when I first had an HbA1c under 48. I have never been on meds. I had no choice. He just did it, and I would never have known had I not looked at my on-line records. I did mention it to him later. He said I no longer have diabetes so he is correct in marking me as such. I don't agree with him. I have since had a retinopathy screening, and have just been invited for my 6 monthly blood tests.

I found that having diabetes gave us a better annuity deal when we cashed in one of hubby's pensions a couple of years ago. I only had to declare it on the application form. There were no checks.

One thing I'm not happy about is that the VAT exemption on my self funded testing equipment, especially the Libre sensor, should strictly speaking no longer apply.
Click to expand...

You're right and your doctor is wrong. How can Diabetes ever be resolved. It's the obsession with the 48mmol number again. We all know complications can develop at lower levels. He should have discussed this with you.
 
dbr10 said:
You're right and your doctor is wrong. How can Diabetes ever be resolved. It's the obsession with the 48mmol number again. We all know complications can develop at lower levels. He should have discussed this with you.
Click to expand...

You are right. I do not agree with him. He used the wrong code. If he were going to re-code me at all, he should have used the "diabetes in remission" code. Unfortunately there are no guidelines for GPs on this matter. They can keep someone on the register forever, or they can remove them using their own criteria. My GP believes 48 is the magic number. No discussion. He just did it. I will get further with my nurse on this, and will discuss it with her next time I see her.
 
Last edited:
Bluetit1802 said:
You are right. I do not agree with him. He used the wrong code. If he were going to re-code me at all, he should have used the "diabetes in remission" code. Unfortunately there are no guidelines for GPs on this matter. They can keep someone on the register forever, or they can remove them using their own criteria. My GP believes 48 is the magic number. No discussion. He just did it. I will get further with my nurse on this, and will discuss it with her next time I see her.
Click to expand...
This worries me now. How do I know that the DN nurse who went behind my back to change my six monthly blood tests to twelve monthly tests - being careful to refer to another doctor of course - hasn't also done something to screw up the retinopathy and neuropathy tests. When I can actually get an appointment, that is how I am going to approach the subject with my doctor - that I'm concerned about what else might have been changed without my knowledge.
 
Hi @rjgregory In the UK it is safe to get the "remission" status for eye testing at least https://assets.publishing.service.g...87/DES_07_GP_information_sheet_March_2016.pdf.

upload_2018-6-9_9-50-33.png

I cannot recall who but a member on this site said they still get tests with a resolved status but the guidelines are clear above. I have been in touch with my CCG as I was cheesed off about the withdrawal of meter strips after stopping Metformin and getting a remission status. As this has been removed I have asked for a 3 monthly HbA1c, this was the response (some details redacted):

upload_2018-6-9_10-2-24.png

I shall be asking my surgery for 3 monthly with the occasional full count at my next HbA1c on the 28th of this month.
 
dbr10 said:
This worries me now. How do I know that the DN nurse who went behind my back to change my six monthly blood tests to twelve monthly tests - being careful to refer to another doctor of course - hasn't also done something to screw up the retinopathy and neuropathy tests. When I can actually get an appointment, that is how I am going to approach the subject with my doctor - that I'm concerned about what else might have been changed without my knowledge.
Click to expand...

On the GP computer system there will be alert codes that trigger actions, such as retinopathy screening. After I saw the diabetes resolved note on my records earlier this year I worried about being removed from various things. I phoned reception and asked if I was down for my retinal screening in May and also my June blood tests. She confirmed that I was still down for both, and indeed I had the eye test and have been invited for a blood test. Once this lot of blood tests have been sorted, I will ask if I am down for my December tests and nurse review. Try ringing reception before you speak to the doctor.
 
Mbaker said:
Hi @rjgregory In the UK it is safe to get the "remission" status for eye testing at least https://assets.publishing.service.g...87/DES_07_GP_information_sheet_March_2016.pdf.

View attachment 26964

I cannot recall who but a member on this site said they still get tests with a resolved status but the guidelines are clear above. I have been in touch with my CCG as I was cheesed off about the withdrawal of meter strips after stopping Metformin and getting a remission status. As this has been removed I have asked for a 3 monthly HbA1c, this was the response (some details redacted):

View attachment 26965

I shall be asking my surgery for 3 monthly with the occasional full count at my next HbA1c on the 28th of this month.
Click to expand...

I found those guidelines several months ago, but it hasn't been the case for me. I am coded as resolved (incorrectly) but have still had my eye screening and am about to have a 6 monthly blood test. (last one was December)

I think @DCUKMod has found the same thing.
 
Just to add, the whole thing when "diabetes goes away" is a mess. Most likely because in the past it has happened so rarely, and none of the guideline makers have thought to make up some proper guidelines for GPs. Now it is happening more often GPs don't know what to do, so they apply their own criteria. This whole issue needs looking at by NICE or whoever.
 
This is the statement from Public Health England regarding eye screening:-

‘Diabetes in remission’ and ‘Diabetes resolved’ codes
  • patients should be screened annually for life if there has ever been a definite diagnosis of diabetes, excluding gestational diabetes
  • patients in remission – for example due to an intervention such as bariatric surgery – should be classified ‘Diabetes in remission’, not ‘Diabetes resolved’. This ensures they will still be invited for screening
  • patients will not be invited for screening if they have a read code of ‘Diabetes resolved’. This code should not be used for patients whose diabetes is in remission due to an intervention
  • GPs should review all patients with a ‘Diabetes resolved’ read code and amend to ‘Diabetes in remission’ as appropriate
https://assets.publishing.service.g...87/DES_07_GP_information_sheet_March_2016.pdf
​
The Diabetic Eye Screening Programme does have failsafe mechanisms in place to try and cope with the situation where GPs have wrongly coded patients as 'Diabetes resolved'. For each patient with that code, the GP is asked to fill in a form explaining why the diabetes has resolved. If the GP doesn't return the form, or the Clinical Lead of the Programme thinks the reason given is wrong, the patient will still be called for screening.

However, it is still important to have the correct read code as a) the efficiency of failsafe procedures can vary between programmes so there is a danger that someone could 'fall through the net' and b) these failsafe procedures are quite time-consuming and the resources used could be better spent elsewhere.
 
Bluetit1802 said:
If anyone is interested, here is the list of codes specific to diabetes - is it any wonder the system is in a mess. There are hundreds of them just for diabetes.

https://clinicalcodes.rss.mhs.man.ac.uk/medcodes/article/6/codelist/diabetes-mellitus/
Click to expand...
And it's all currently being replaced (in a phased approach from April 2018) :-

Two versions of clinical codes (Read v2 and CTV3) currently exist in General Practice. Not all GP systems use the same coding system.

Parts of the Read code vocabulary are full and new codes have been allocated to unrelated areas. This makes analysis more difficult.

The NHS needs a single clinical terminology, for clinical data to be exchanged accurately and consistently across all care settings. This will allow better patient care and improve how clinical data can be analysed and reported on.

SNOMED CT is an international clinical terminology. It will allow the UK to take part in more effective research and analysis of health information, to support national and global health care improvements.
https://digital.nhs.uk/services/ter...d-ct/snomed-ct-implementation-in-primary-care​
 
Bluetit1802 said:
On the GP computer system there will be alert codes that trigger actions, such as retinopathy screening. After I saw the diabetes resolved note on my records earlier this year I worried about being removed from various things. I phoned reception and asked if I was down for my retinal screening in May and also my June blood tests. She confirmed that I was still down for both, and indeed I had the eye test and have been invited for a blood test. Once this lot of blood tests have been sorted, I will ask if I am down for my December tests and nurse review. Try ringing reception before you speak to the doctor.
Click to expand...
Okay thanks.
 
Mbaker said:
Hi @rjgregory In the UK it is safe to get the "remission" status for eye testing at least https://assets.publishing.service.g...87/DES_07_GP_information_sheet_March_2016.pdf.

View attachment 26964

I cannot recall who but a member on this site said they still get tests with a resolved status but the guidelines are clear above. I have been in touch with my CCG as I was cheesed off about the withdrawal of meter strips after stopping Metformin and getting a remission status. As this has been removed I have asked for a 3 monthly HbA1c, this was the response (some details redacted):

View attachment 26965

I shall be asking my surgery for 3 monthly with the occasional full count at my next HbA1c on the 28th of this month.
Click to expand...

I'll rreiterate again - I am marked as Diabetes Resolved and sstill have HbA1c screening. I was never weighed or measured when on it, so no difference there, and my feet were checked once, 4 months in. I check my feet when I shower, daily.

I'm a bendy person so I can see them well, and pretty close up.

I feel certain, if I had concerns, my GP would act accordingly.
 
Mbaker said:
Hi @rjgregory In the UK it is safe to get the "remission" status for eye testing at least https://assets.publishing.service.g...87/DES_07_GP_information_sheet_March_2016.pdf.

View attachment 26964

I cannot recall who but a member on this site said they still get tests with a resolved status but the guidelines are clear above. I have been in touch with my CCG as I was cheesed off about the withdrawal of meter strips after stopping Metformin and getting a remission status. As this has been removed I have asked for a 3 monthly HbA1c, this was the response (some details redacted):

View attachment 26965

I shall be asking my surgery for 3 monthly with the occasional full count at my next HbA1c on the 28th of this month.
Click to expand...
Why do u feel the need to be checked every 3 months...? I thought twice yearly was the norm...and thats for those who are not resolved or in remission etc
 
james11 said:
Why do u feel the need to be checked every 3 months...? I thought twice yearly was the norm...and thats for those who are not resolved or in remission etc
Click to expand...
It is more about my kidney function than HbA1c, this is the area I look at first. Then I focus on the A1c which is not tracking with my glucose self testing. As I was so severely broken at diagnosis I do not want to wait half a year to see a potential problem.
 
james11 said:
Why do u feel the need to be checked every 3 months...? I thought twice yearly was the norm...and thats for those who are not resolved or in remission etc
Click to expand...
There are many reasons to have a 3 monthly HbA1c. In NZ, it's the norm, unless and until the person has stabilised for some time and the risk of rapid deterioration is low. At that point they may drop to 6 monthly. IMHO 12 monthly HbA1c testing for T2s is false economy, but I know the UK health planners won't listen to arguments like that.
 
Mbaker said:
It is more about my kidney function than HbA1c, this is the area I look at first. Then I focus on the A1c which is not tracking with my glucose self testing. As I was so severely broken at diagnosis I do not want to wait half a year to see a potential problem.
Click to expand...
Absolutely. Another factor in health planning at the national level is the question: What if a periodic test is missed for some reason? If one is on 6 monthly testing, then the interval could become 12 months. For the cost of an HbA1c I consider this madness.
 
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