Patient Participation Group Meeting - Soon

[DianaMC]

Could they get a bit more understanding about newly diagnosed prediabetics possibly being willing to help themselves - including appreciating that we might find a glucose meter useful even if only offered temporarily, or insight into how we might obtain one ourselves. I was told that measuring blood sugar was potentially obsessive and unnecessary- having just been told that, if the dietary approach to improving my HBa1c reading didn’t yield a positive result, the next step they would take would be to stick me on metformin! I say this as someone who has had negative side effects to prescribed drugs, so I’m not the first to get in the pharmacist’s queue for something new - particularly for anything major.

My husband contributed to a PPG for some while, a few years back, and found it a very positive experience.

Good luck with your experiences in yours! Great idea to ask people here about things to raise. I can possibly think of more, but the above is what comes to mind straight away. And some of it was to do with having to wait 2 months to attend the NHS course - I am not the sort of person who is content to sit doing nothing whilst waiting for someone else to sort my life out, when I’ve just been told about something that, to me, has registered some danger is lurking! To be fair, I was handed some leaflets to take away and read, but most related to heart health. And the other was all about type 2, so lots of the information seemed irrelevant to me. I’m in my 50s, but I couldn’t identify with the pictures of very elderly people in that booklet! Looked like something I might have handed to my 90+ grandma , when she was around! (Sorry @Listlad - I’ve ended up going on a bit!)

 

[Listlad]

Could they get a bit more understanding about newly diagnosed prediabetics possibly being willing to help themselves - including appreciating that we might find a glucose meter useful even if only offered temporarily, or insight into how we might obtain one ourselves. I was told that measuring blood sugar was potentially obsessive and unnecessary- having just been told that, if the dietary approach to improving my HBa1c reading didn’t yield a positive result, the next step they would take would be to stick me on metformin! I say this as someone who has had negative side effects to prescribed drugs, so I’m not the first to get in the pharmacist’s queue for something new - particularly for anything major.

My husband contributed to a PPG for some while, a few years back, and found it a very positive experience.

Good luck with your experiences in yours! Great idea to ask people here about things to raise. I can possibly think of more, but the above is what comes to mind straight away. And some of it was to do with having to wait 2 months to attend the NHS course - I am not the sort of person who is content to sit doing nothing whilst waiting for someone else to sort my life out, when I’ve just been told about something that, to me, has registered some danger is lurking! To be fair, I was handed some leaflets to take away and read, but most related to heart health. And the other was all about type 2, so lots of the information seemed irrelevant to me. I’m in my 50s, but I couldn’t identify with the pictures of very elderly people in that booklet! Looked like something I might have handed to my 90+ grandma , when she was around! (Sorry @Listlad - I’ve ended up going on a bit!)

Thanks for taking the trouble to post @DianaMC

I dont use a meter myself. But I understand why people do. When I enquired at my surgery about a meter I was told only those prone to hypos were eligible. And “test strips are expensive”. I understand your point and the actual cost effectiveness of dishing out meters and strips and will keep that one in my top pocket for when I get the right opportunity. Funnily enough, the GP listed on the agenda is the very one who told me that test strip are expensive.

 

[Ryhia]

(Changed to a different GP practice late 2018)
Visited my doc yesterday for ECG results (which were good). Whilst there we got to chatting, he is being very supportive with my efforts to manage my diabetes with diet and was interested to show me some of my previous blood results. To my amazement they show that I had been pre-diabetic since 2014! No one bothered to tell me until early 2018 when my bloods were then at 46. If I had known in 2014 when my bloods were 43 I would like to think I would have tried to avoid what turned out to be the inevitable,

I do not know at what point decisions are made to inform people that they are pre diabetic and what a pre-diabetic blood test is actually flagged as. For my latest bloods bearing in mind I am diabetic, I was told they were "normal" by both the receptionist and later by the practice nurse. When I pushed the receptionist for more information I was told they were 47, which is a better result than my previous test of 52 but certainly not normal. In the past I would have simply accepted what I was told. I do not know if this "normal" diagnosis comes from the blood testing organization or a diagnosis some initial reader of the results adds but we should be informed what blood tests actually show, perhaps there is simply a "normal" or problem flag, would explain things but don't know. Annoyingly when I met up with the practice nurse her first words to me were "I don't know why they have asked you to come to see me as all your blood tests are normal" (got full blood works done not just Hb1ac). At which point I just had to remark I am diabetic and 47 is not "normal" its highly pre diabetic. I have also had to go beyond her to doc to request a copy of blood results (who simply said no problem) as these were refused, first by the receptionist and then by same practice nurse. There must be a better way to present information.

With regard to the PPC meeting, it seems to me that people need to be provided with better information to the extent of educating them so that they understand what pre-diabetes means to them and what their options are. I would certainly have benefitted from better knowledge. I do not know if there is already an awareness raising course/session available from the NHS but if not something could perhaps be designed to be presented to pre-diabetics who could be encouraged to attend. A good explanation of diabetes and pre-diabetes is needed also an emphasis on changing eating habits, with different options not just a high carb diet. Perhaps someone who has managed to reduce their blood sugars to (real) "normal" levels could be invited along to share their story to encourage people, some people have done this with low carb eating, some by using Slimming world others through very low calorie diets so there a number of different scenarios.
Cheers

 

[zauberflote]

@Listlad I can't comment as we don't have this sort of group here run by doctors. There are ADA groups that meet at YMCA's etc, but I called one and was told that I wasn't eligible; they had to reserve their limited space for those who were more overweight than I was at the time. (Not overweight at all any more ) I understand that, but it was frustrating all the same. However, because of that turn-down I found this forum and lots of fun!
Sounds like you're getting a ton of great questions. My PCP handed me a cheat sheet that probably resembles EatWell plate and said to me, for you, you can probably have 2+ pieces of fruit/day. I think they are so used to throwing medications at diseases that nothing else occurs to them. And this guy is very young, so he really ought to be on the cutting edge. Sigh.
So how did the meeting go?

 

[Listlad]

@Listlad I can't comment as we don't have this sort of group here run by doctors. There are ADA groups that meet at YMCA's etc, but I called one and was told that I wasn't eligible; they had to reserve their limited space for those who were more overweight than I was at the time. (Not overweight at all any more ) I understand that, but it was frustrating all the same. However, because of that turn-down I found this forum and lots of fun!
Sounds like you're getting a ton of great questions. My PCP handed me a cheat sheet that probably resembles EatWell plate and said to me, for you, you can probably have 2+ pieces of fruit/day. I think they are so used to throwing medications at diseases that nothing else occurs to them. And this guy is very young, so he really ought to be on the cutting edge. Sigh.
So how did the meeting go?

It’s this coming week, Magic Flute.

Yes I came across the ineligibility barriers too, largely as I hadn’t been officially diagnosed as diabetic or because of not being heavy enough.

I found this forum as I wasn’t getting any sense out of some of them on diet.

 

[Listlad]

(Changed to a different GP practice late 2018)
Visited my doc yesterday for ECG results (which were good). Whilst there we got to chatting, he is being very supportive with my efforts to manage my diabetes with diet and was interested to show me some of my previous blood results. To my amazement they show that I had been pre-diabetic since 2014! No one bothered to tell me until early 2018 when my bloods were then at 46. If I had known in 2014 when my bloods were 43 I would like to think I would have tried to avoid what turned out to be the inevitable,

I do not know at what point decisions are made to inform people that they are pre diabetic and what a pre-diabetic blood test is actually flagged as. For my latest bloods bearing in mind I am diabetic, I was told they were "normal" by both the receptionist and later by the practice nurse. When I pushed the receptionist for more information I was told they were 47, which is a better result than my previous test of 52 but certainly not normal. In the past I would have simply accepted what I was told. I do not know if this "normal" diagnosis comes from the blood testing organization or a diagnosis some initial reader of the results adds but we should be informed what blood tests actually show, perhaps there is simply a "normal" or problem flag, would explain things but don't know. Annoyingly when I met up with the practice nurse her first words to me were "I don't know why they have asked you to come to see me as all your blood tests are normal" (got full blood works done not just Hb1ac). At which point I just had to remark I am diabetic and 47 is not "normal" its highly pre diabetic. I have also had to go beyond her to doc to request a copy of blood results (who simply said no problem) as these were refused, first by the receptionist and then by same practice nurse. There must be a better way to present information.

With regard to the PPC meeting, it seems to me that people need to be provided with better information to the extent of educating them so that they understand what pre-diabetes means to them and what their options are. I would certainly have benefitted from better knowledge. I do not know if there is already an awareness raising course/session available from the NHS but if not something could perhaps be designed to be presented to pre-diabetics who could be encouraged to attend. A good explanation of diabetes and pre-diabetes is needed also an emphasis on changing eating habits, with different options not just a high carb diet. Perhaps someone who has managed to reduce their blood sugars to (real) "normal" levels could be invited along to share their story to encourage people, some people have done this with low carb eating, some by using Slimming world others through very low calorie diets so there a number of different scenarios.
Cheers

I will carry that message with me. Thanks. I was clearly informed on my prediabetic state. What was missing was the right guidance on dietary change.

Thanks.

 

[HSSS]

(Changed to a different GP practice late 2018)
Visited my doc yesterday for ECG results (which were good). Whilst there we got to chatting, he is being very supportive with my efforts to manage my diabetes with diet and was interested to show me some of my previous blood results. To my amazement they show that I had been pre-diabetic since 2014! No one bothered to tell me until early 2018 when my bloods were then at 46. If I had known in 2014 when my bloods were 43 I would like to think I would have tried to avoid what turned out to be the inevitable,

I do not know at what point decisions are made to inform people that they are pre diabetic and what a pre-diabetic blood test is actually flagged as. For my latest bloods bearing in mind I am diabetic, I was told they were "normal" by both the receptionist and later by the practice nurse. When I pushed the receptionist for more information I was told they were 47, which is a better result than my previous test of 52 but certainly not normal. In the past I would have simply accepted what I was told. I do not know if this "normal" diagnosis comes from the blood testing organization or a diagnosis some initial reader of the results adds but we should be informed what blood tests actually show, perhaps there is simply a "normal" or problem flag, would explain things but don't know. Annoyingly when I met up with the practice nurse her first words to me were "I don't know why they have asked you to come to see me as all your blood tests are normal" (got full blood works done not just Hb1ac). At which point I just had to remark I am diabetic and 47 is not "normal" its highly pre diabetic. I have also had to go beyond her to doc to request a copy of blood results (who simply said no problem) as these were refused, first by the receptionist and then by same practice nurse. There must be a better way to present information.

With regard to the PPC meeting, it seems to me that people need to be provided with better information to the extent of educating them so that they understand what pre-diabetes means to them and what their options are. I would certainly have benefitted from better knowledge. I do not know if there is already an awareness raising course/session available from the NHS but if not something could perhaps be designed to be presented to pre-diabetics who could be encouraged to attend. A good explanation of diabetes and pre-diabetes is needed also an emphasis on changing eating habits, with different options not just a high carb diet. Perhaps someone who has managed to reduce their blood sugars to (real) "normal" levels could be invited along to share their story to encourage people, some people have done this with low carb eating, some by using Slimming world others through very low calorie diets so there a number of different scenarios.
Cheers

Sadly not an unusual story. I’d never had an hb1ac before diagnosis by a temporary young locum but fasting bgl for many years should have raised flags as they were definitely problematic prediabetic and into diabetic levels. There are prediabetic course on the nhs, how useful they actually are may be another issue, probably variable depending on the presenter and their low carb views. In my surgery “normal” hb1ac for a diabetic means just that -what they expect to see not what they should or want to see!

 

[zauberflote]

Have to agree with these previous comments. I just today got a call from my PCP office saying they'd heard from the dr (nearly a month after the fact, and nearly 3 weeks after they'd mailed me the results printout) and my "blood sugar is fantastic, no concerns at all. ". The number in question was Fbg 6.2. He has somewhat different goals than I do. If he used that as an average, the HbA1c would be US 5.5, which is safe by 0.2. And is very close to my current average of all numbers input over three months. But still. He has not told me one single thing about what to do, and had no further comments after "no concerns". Do I continue as I am eating? Does he care? If I get well he loses money. Hmmmmmm....
@HSSS I'm the same. 25 years ago I crept into pre-D territory and nobody said boo. I continued creeping, all unawares that pre-D was even a thing! Nobody said boo. Maybe bc I don't think they much care until you hit Medicare (65) and then they'll say, oh, high risk age, let's see how much $$$ we can get from the gummint.
Here is a little totally OT rant: I'm looking out my open window at our road. A young couple stroll up the hill, pushing Baby in the cutest tricycle stroller I ever saw, and this is how they went: Daddy pushed, Mommy had her phone on speakerphone listening to a podcast or something, and NOBODY WAS TALKING TO BABY! No wonder kids aren't ready for school.
Sorry.... we return you to regularly scheduled programming.
Ah here they come back down! And Daddy and Baby are talking! Hurray!

 

[kitedoc]

I suggest you wear bright oranges braces, you will be remembered well and your 6 year old will have some interesting news for her class. ( or embarassing news)!
Most lady patients are interested in diets of various types so I think you will have their attention.
Saying that there is a Low carb program in UK, Eendorsed by the NHS and a recent change and new recomendation (or grudging admission) from the American Diabetes Association ( across the pond) that low carb diets are suitable for Thpye 2 diabetics should give the health professionals something to chew on.
Good Luck.

 

[DCUKMod]

Have to agree with these previous comments. I just today got a call from my PCP office saying they'd heard from the dr (nearly a month after the fact, and nearly 3 weeks after they'd mailed me the results printout) and my "blood sugar is fantastic, no concerns at all. ". The number in question was Fbg 6.2. He has somewhat different goals than I do. If he used that as an average, the HbA1c would be US 5.5, which is safe by 0.2. And is very close to my current average of all numbers input over three months. But still. He has not told me one single thing about what to do, and had no further comments after "no concerns". Do I continue as I am eating? Does he care? If I get well he loses money. Hmmmmmm....
@HSSS I'm the same. 25 years ago I crept into pre-D territory and nobody said boo. I continued creeping, all unawares that pre-D was even a thing! Nobody said boo. Maybe bc I don't think they much care until you hit Medicare (65) and then they'll say, oh, high risk age, let's see how much $$$ we can get from the gummint.
Here is a little totally OT rant: I'm looking out my open window at our road. A young couple stroll up the hill, pushing Baby in the cutest tricycle stroller I ever saw, and this is how they went: Daddy pushed, Mommy had her phone on speakerphone listening to a podcast or something, and NOBODY WAS TALKING TO BABY! No wonder kids aren't ready for school.
Sorry.... we return you to regularly scheduled programming.
Ah here they come back down! And Daddy and Baby are talking! Hurray!

With respect, I think it's probably worth noting that any even casual recognition of pre-diabetes is a relatively recent development.

The World Health Organisation rejects the term pre-diagnosis as a diagnosis. Others consider labelling someone with pre-diabetes turns people into patients. The WHO Diabetes Fact Sheet makes no reference to pre-diabetes at all.

https://www.who.int/news-room/fact-sheets/detail/diabetes

I'm neither supporting nor condemning them.

 

[Bluetit1802]

With respect, I think it's probably worth noting that any even casual recognition of pre-diabetes is a relatively recent development.

The World Health Organisation rejects the term pre-diagnosis as a diagnosis. Others consider labelling someone with pre-diabetes turns people into patients. The WHO Diabetes Fact Sheet makes no reference to pre-diabetes at all.

https://www.who.int/news-room/fact-sheets/detail/diabetes

I'm neither supporting nor condemning them.

To add to that, when I dropped to pre-diabetic HbA1c levels, my on-line notes have been coded as
"hyperglycaemic - non-diabetic".
That has been added recently and backdated. It's a new one on me.

 

[Listlad]

To add to that, when I dropped to pre-diabetic HbA1c levels, my on-line notes have been coded as
"hyperglycaemic - non-diabetic".
That has been added recently and backdated. It's a new one on me.

I am still coded as prediabetic at my surgery. And my HbA1c is or was below prediabetic levels.

 

[Listlad]

To complicate the issue on Prediabetes diagnosis, this quote is straight off the Diabetes.co.uk website:

“If you are diagnosed with prediabetes, your doctor should clearly set out the steps you need to take to lower your risk of developing type 2 diabetes.”

 

[Deleted member 308541]

The WHO Diabetes Fact Sheet makes no reference to pre-diabetes at all.

Would this bit from the link to WHO, be classed as "borderline diabetic" as I was informed I was by my GP at the time twenty years ago.

Impaired glucose tolerance and impaired fasting glycaemia

Impaired glucose tolerance (IGT) and impaired fasting glycaemia (IFG) are intermediate conditions in the transition between normality and diabetes.

People with IGT or IFG are at high risk of progressing to type 2 diabetes, although this is not inevitable.

 

[Bluetit1802]

I am still coded as prediabetic at my surgery. And my HbA1c is or was below prediabetic levels.

It is unlikely that entry will ever disappear, but should your GP decide you are in remission, he will add a further coding to that effect. I have all sorts of codings for various illnesses I have had in the past. Clearly, I no longer have these illnesses, but the codings are still there with the relevant date at the side. As an example, I have a coding for Type 2 diabetes, dated when I was first diagnosed. Then I have a coding for "hyperglycaemic non-diabetic" then I have a coding for "diabetes resolved". They are all still there on my records.

 

[HSSS]

It is unlikely that entry will ever disappear, but should your GP decide you are in remission, he will add a further coding to that effect. I have all sorts of codings for various illnesses I have had in the past. Clearly, I no longer have these illnesses, but the codings are still there with the relevant date at the side. As an example, I have a coding for Type 2 diabetes, dated when I was first diagnosed. Then I have a coding for "hyperglycaemic non-diabetic" then I have a coding for "diabetes resolved". They are all still there on my records.

Out of interest where do you see these codings. I have online access via “emis patient access” but see nothing like this. Though to be fair a lot of the records on there are partial, incomplete or missing events and appointments completely! Maybe that’s about my surgery. Yours does seem very efficient compared to our shambles

 

[Bluetit1802]

Out of interest where do you see these codings. I have online access via “emis patient access” but see nothing like this. Though to be fair a lot of the records on there are partial, incomplete or missing events and appointments completely! Maybe that’s about my surgery. Yours does seem very efficient compared to our shambles

I look under Medical Record/Problems. There are 3 choices, Current, Past (significant) and past (minor). It doesn't give any actual codes. It just gives a description and the date. I am guessing, but I imagine the GP looks for the code in his little black book, enters it, and the description appears as if by magic. I guess this because at the side of each description is a "read more" link, which takes you to a load of patient information about that disease/condition/whatever. This is also Patient Access.

Then under "Consultations" it gives the date of the appointment with either GP or nurse, and a very brief description of what they did. It also includes dates when a doctor/nurse has looked in my records without an appointment in order to add something to my records or just to look something up. One of the GPs I sometimes see only has his name and date. He never comments why he was in my records.

 

[HSSS]

Thanks. Which category (current past significant or minor) seems entirely random and some missing too. Same for problems. Appointments don’t work because almost all the drs are locums and don’t appear in there and there’s rarely any anyway.

I pretty much just use it for results and repeats. At least that’s big progress from waiting weeks to get the dr that’s already reviewed results once going back to it a second time and approving it being released to me, eventually.

 

[Bluetit1802]

Thanks. Which category (current past significant or minor) seems entirely random and some missing too. Same for problems. Appointments don’t work because almost all the drs are locums and don’t appear in there and there’s rarely any anyway.

I pretty much just use it for results and repeats. At least that’s big progress from waiting weeks to get the dr that’s already reviewed results once going back to it a second time and approving it being released to me, eventually.

I have had my records on line since 2016 when it was first brought in. I have found that over time more stuff gets added to the problems section particularly. The latest was the weird "hyperglycaemic - non-diabetic" It was not there a month ago, but has suddenly appeared, with a date in 2014 when I had my first pre-diabetic HbA1c. There were also quite a few problems listed under current problems, about which I was not happy because they are ancient problems long since solved. I emailed and asked for them to be moved to past problems. My GP did move them, and also changed a couple of things that were wrong that I had pointed out. She sent me a letter to apologise! Some of my past problems are also missing, but they can stay missing!

The appointments system at our surgery only allows for a certain number of appointments to appear on-line. One or two are released week by week. There are never very many, and most are at the crack of dawn. The rest are reserved for those that ring or call in.

 

[HSSS]

I have had my records on line since 2016 when it was first brought in. I have found that over time more stuff gets added to the problems section particularly. The latest was the weird "hyperglycaemic - non-diabetic" It was not there a month ago, but has suddenly appeared, with a date in 2014 when I had my first pre-diabetic HbA1c. There were also quite a few problems listed under current problems, about which I was not happy because they are ancient problems long since solved. I emailed and asked for them to be moved to past problems. My GP did move them, and also changed a couple of things that were wrong that I had pointed out. She sent me a letter to apologise! Some of my past problems are also missing, but they can stay missing!

The appointments system at our surgery only allows for a certain number of appointments to appear on-line. One or two are released week by week. There are never very many, and most are at the crack of dawn. The rest are reserved for those that ring or call in.

I think I’ll have to sit and go through it and compose an email correcting all the errors. Can’t do much about the missing but there’s far too much old stuff in the current section.