Anyone else feel their Doctor(s) let them down ?

[Patrick66]

I have a really good relationship with my Dr. Great guy who has been very supportive through suicide planning, strokes etc.

But when it comes to my Diabetes I cant help but feel very let down.

Blood test tells him I am pre-diabetic. Doesn't explain what that actually means or what I should do about it.

Second test confirms Diabetes.

Sent to Diabetic nurse. She checks feet, gets me put on medication, weighs me, looks at me critically and tells me I could "lose a few pounds" ( I am 6'4" tall and weighed 15st at the time) ..and that was it.

No advice about diet. No advice about lifestyle. Nothing.

Subsequent visits have seen me told not to eat grapes, my weight, once down at 14st 5lb, has still had the "well you could lose a few pounds" comment and my feet are always fine.

I have asked what I should eat and been told, "No grapes and no sugar..if you can help it!" and that's the extent of any dietary advice.

So, in four years since diagnosis, I have felt woefully unprepared and very let down by a system that gives no guidance, no support and criticises when it goes wrong but is incapable of advice to get you back on track.

Anyone else ?

 

[Robin101]

Don't think you are on your own! I do feel sorry for Doctors as 'most' would like the time and resources to do more. And unless you are lucky to get a doctor who has Diabetes on his 'things to do list's then it will stay that way.
Government strategy is very long term so recent announcements will take time to implement.
I think you will get your best advice here in any case.
As a starter if not already done you should have blood tests to establish HbA1c to at least where on the scale you currently sit.

At your current weight v height it doesn't actually sound as if that would be the root cause of your problem.

So diet will always be important and cutting out dietary sugar is the best first step. Inspecting foods and labels is important.

E.g. Bisto Low Salt gravy granules are 25% less salt BUT 100% more sugar! Who knew??

 

[Sue192]

A considerable number of us on here have had the same experience. Mine is also a great chap, very laid-back. The laid-back view works for me; for others it would be hopeless. I was just told 'see how you get on with diet and exercise' and I haven't seen him (or had follow-ups) since, except arranging my own hbA1C and eye/foot checks. So off to the internet to see what I can find, which led me to this excellent Forum, so you have done the right thing by coming here. You just have to glean as much as you can from other sources, take some advice to heart, and other advice with a very large pinch of salt, and find out what works for you. The last part of that sentence is crucial. Keep reading, @Patrick66, keep posting and asking for advice, and keep trucking!

 

[Colin of Kent]

I am thankful to have a consultant who is open-minded, so when I suggest doing something 'off-piste', he's generally okay with it. But I do wonder whether, if I wasn't pro-active, what advice would I get? Or, perhaps more to the point, what advice would I not get? I am well aware of countless others who are in exactly the same boat as you. I'm reading one of Jimmy Moore's books right now, and it's full of anecdotes like yours. I think the thing to do is keep coming to forums like this and educating yourself a little bit.

 

[Major Buckmaster]

I am thankful to have a consultant who is open-minded, so when I suggest doing something 'off-piste', he's generally okay with it. But I do wonder whether, if I wasn't pro-active, what advice would I get? Or, perhaps more to the point, what advice would I not get? I am well aware of countless others who are in exactly the same boat as you. I'm reading one of Jimmy Moore's books right now, and it's full of anecdotes like yours. I think the thing to do is keep coming to forums like this and educating yourself a little bit.

I think most of us are in the same boat.

Since they think it’s our fault we have it therefore we don’t deserve the same level of care.

 

[Patrick66]

Don't think you are on your own! I do feel sorry for Doctors as 'most' would like the time and resources to do more. And unless you are lucky to get a doctor who has Diabetes on his 'things to do list's then it will stay that way.
Government strategy is very long term so recent announcements will take time to implement.
I think you will get your best advice here in any case.
As a starter if not already done you should have blood tests to establish HbA1c to at least where on the scale you currently sit.

At your current weight v height it doesn't actually sound as if that would be the root cause of your problem.

So diet will always be important and cutting out dietary sugar is the best first step. Inspecting foods and labels is important.

E.g. Bisto Low Salt gravy granules are 25% less salt BUT 100% more sugar! Who knew??

I've been diabetic for 4 years. Have regular tests. Range from 5.7 to 6.7 but then rocketed up to 7.8 which resulted in an operation being cancelled.

I appreciate the time factor for doctors but to not even be given basic advice by the diabetic team was disappointing to say the least. It was as though they didn't take it seriously.

 

[Patrick66]

A considerable number of us on here have had the same experience. Mine is also a great chap, very laid-back. The laid-back view works for me; for others it would be hopeless. I was just told 'see how you get on with diet and exercise' and I haven't seen him (or had follow-ups) since, except arranging my own hbA1C and eye/foot checks. So off to the internet to see what I can find, which led me to this excellent Forum, so you have done the right thing by coming here. You just have to glean as much as you can from other sources, take some advice to heart, and other advice with a very large pinch of salt, and find out what works for you. The last part of that sentence is crucial. Keep reading, @Patrick66, keep posting and asking for advice, and keep trucking!

Thank you

 

[Patrick66]

I am thankful to have a consultant who is open-minded, so when I suggest doing something 'off-piste', he's generally okay with it. But I do wonder whether, if I wasn't pro-active, what advice would I get? Or, perhaps more to the point, what advice would I not get? I am well aware of countless others who are in exactly the same boat as you. I'm reading one of Jimmy Moore's books right now, and it's full of anecdotes like yours. I think the thing to do is keep coming to forums like this and educating yourself a little bit.

Absolutely.

I just felt it was a bit of a throw away diagnosis, "Oh, by the way you're diabetic"...but we won't take it too seriously.

 

[chris66]

I have a really good relationship with my Dr. Great guy who has been very supportive through suicide planning, strokes etc.

But when it comes to my Diabetes I cant help but feel very let down.

Blood test tells him I am pre-diabetic. Doesn't explain what that actually means or what I should do about it.

Second test confirms Diabetes.

Sent to Diabetic nurse. She checks feet, gets me put on medication, weighs me, looks at me critically and tells me I could "lose a few pounds" ( I am 6'4" tall and weighed 15st at the time) ..and that was it.

No advice about diet. No advice about lifestyle. Nothing.

Subsequent visits have seen me told not to eat grapes, my weight, once down at 14st 5lb, has still had the "well you could lose a few pounds" comment and my feet are always fine.

I have asked what I should eat and been told, "No grapes and no sugar..if you can help it!" and that's the extent of any dietary advice.

So, in four years since diagnosis, I have felt woefully unprepared and very let down by a system that gives no guidance, no support and criticises when it goes wrong but is incapable of advice to get you back on track.

Anyone else ?

Although it has only been 6-7 weeks since i was diagnosed, although this was three weeks after i had the blood test, i am in a fairly similar situation in terms that i was seen by nurse, weighed, measured around belly and had feet checked, given a sheet of paper with a handfull of foods listed and told would email Dr saying i should be prescribed metformin and would need eyes testing, even though i have them tested regularly and wear glasses thats it, saw my Dr a week or two later, no prescription and no further explanation. Even though there is a faily history of diabetes so i should have some idea, i don't and don't feel i am being helped in any way, just left to get on with it.

 

[Robin101]

The fact you are on this forum means you understand that it is you that has the most vested interest in good outcomes.
Like others I seem to find great advice here and where I need support I then ask my diabetic nurse or doctor to do their part. They usually do.
Of note although I have fairly regular eye tests at opticians (reading glasses) and they are aware of my diabetes they did not pick up the early signs of retinopathy whereas the NHS check did. So it's important to use NHS for the right stuff!

 

[Ponchu]

It could have been worse; much worse.

Imagine where you’d be today if they had advised you?

 

[Robinredbreast]

Hi, my new GP ( 2 years ago) whom I had never met, changed my diabetes type from Type 1, to ' late onset type 2' this was said to me at my diabetes check up with DSN at my surgery and she said my GP was very knowledgeable about diabetes and then nurse said type 1 only happens in children and adolescents !!
My latest results weren't great last week, so I rang the diabetes nurses at my hospital asking for help and advice and 9 days later still nothing. I wonder what the point is at times and feeling worthless and invisible.
30 years type 1 and it's hard going

 

[Patrick66]

Although it has only been 6-7 weeks since i was diagnosed, although this was three weeks after i had the blood test, i am in a fairly similar situation in terms that i was seen by nurse, weighed, measured around belly and had feet checked, given a sheet of paper with a handfull of foods listed and told would email Dr saying i should be prescribed metformin and would need eyes testing, even though i have them tested regularly and wear glasses thats it, saw my Dr a week or two later, no prescription and no further explanation. Even though there is a faily history of diabetes so i should have some idea, i don't and don't feel i am being helped in any way, just left to get on with it.

Yep, sounds about right.

Sorry you have experienced the same as me.

 

[Patrick66]

The fact you are on this forum means you understand that it is you that has the most vested interest in good outcomes.
Like others I seem to find great advice here and where I need support I then ask my diabetic nurse or doctor to do their part. They usually do.
Of note although I have fairly regular eye tests at opticians (reading glasses) and they are aware of my diabetes they did not pick up the early signs of retinopathy whereas the NHS check did. So it's important to use NHS for the right stuff!

Absolutely. I have my eyes tested and my annual retinopathy scan.

 

[Patrick66]

Hi, my new GP ( 2 years ago) whom I had never met, changed my diabetes type from Type 1, to ' late onset type 2' this was said to me at my diabetes check up with DSN at my surgery and she said my GP was very knowledgeable about diabetes and then nurse said type 1 only happens in children and adolescents !!
My latest results weren't great last week, so I rang the diabetes nurses at my hospital asking for help and advice and 9 days later still nothing. I wonder what the point is at times and feeling worthless and invisible.
30 years type 1 and it's hard going

I am sorry to read this.

I suppose their argument would be too many diabetic people, too much cost and time spent. They don't get that its vitally important to us and we aren't another ******* statistic. You aren't worthless at all, none of us are; its the system that's failing us.

I'd be chasing up that Diabetic nurse for answers.

Stay strong!.

Edited for language by moderator.

 

[Bluetit1802]

Absolutely. I have my eyes tested and my annual retinopathy scan.

You haven't been totally let down. You are having regular blood tests and reviews, and are on the diabetes care pathway because you have your feet checked and your retinal scan, so all is not lost. You were mainly let down by insufficient dietary advice - and that is a problem the vast majority of us have faced.

 

[Member496333]

Yep. I was to all intents and purposes told to make my condition worse and sent on my way. Thanks to guidelines, and a comedic lack of understanding, the majority of GPs’ advice is seemingly worse than useless.

“First do no harm”? Yeah right. Eat far more of what caused your condition and don’t bother monitoring it. Come back in three months to get weighed and judged. Considering diabetes and all its related problems is the current hot topic in healthcare around the globe, you’d think someone other than the patients would take five minutes to learn what it is.

 

[Patrick66]

You haven't been totally let down. You are having regular blood tests and reviews, and are on the diabetes care pathway because you have your feet checked and your retinal scan, so all is not lost. You were mainly let down by insufficient dietary advice - and that is a problem the vast majority of us have faced.

I partially agree.

I have reviews but they tell me nothing I didn't already know. I have to remind them about blood tests. Yes, dietary, exercise guidance would have been great. I have Fibromyalgia, I cant run a blooming marathon.

 

[Patrick66]

Yep. I was to all intents and purposes told to make my condition worse and sent on my way. Thanks to guidelines, and a comedic lack of understanding, the majority of GPs’ advice is seemingly worse than useless.

“First do no harm”? Yeah right. Eat far more of what caused your condition and don’t bother monitoring it. Come back in three months to get weighed and judged. Considering diabetes and all its related problems is the current hot topic in healthcare around the globe, you’d think someone other than the patients would take five minutes to learn what it is.

Absolutely.

A bit like being Autistic, I have to educate medical professionals about my condition.

 

[HSSS]

Although it has only been 6-7 weeks since i was diagnosed, although this was three weeks after i had the blood test, i am in a fairly similar situation in terms that i was seen by nurse, weighed, measured around belly and had feet checked, given a sheet of paper with a handfull of foods listed and told would email Dr saying i should be prescribed metformin and would need eyes testing, even though i have them tested regularly and wear glasses thats it, saw my Dr a week or two later, no prescription and no further explanation. Even though there is a faily history of diabetes so i should have some idea, i don't and don't feel i am being helped in any way, just left to get on with it.

This unfortunately isn’t unusual. Metformin may be appropriate. However some drs seem to prescribe it automatically, regardless of having tried other approaches first or not. A point you may wish to consider and ask questions or do research before starting it. The diabetic eye tests are different to the opticians so need to in addition not as an alternative. Therre are courses for dietary advice offered on the nhs. Mine took 4 months from diagnosis and was ordered by my low carb advocate DN. that was a low gi thing pretty much. This forum gave far better advice that worked better. However apparently only 3/10 offered the course took it up. Of the dozen people on the course about 9 barely knew what a carb was or how it affected them. At least 6 walked away poo pooing the advice and thought changing their diet was too much trouble and they’d just take the easy pills instead. You can lead a horse to water.......maybe some gps assume almost everyone would ignore the food advice and so don’t bother in the limited time they have.

I think drs and even diabetic nurses get very little in the way of dietary training. They then often fall back on the standard advice if the eatwell plate and starchy carbs. Some go to the low gi method of eating. Which I guess is an improvement on the empty added sugars options, slow release being marginally better than fast release carbs. And a very few educate themselves further about diabetic specific nutrition.