Feeling deflated and annoyed

[uselesspancreas]

I went to my GP to have my hba1c done. My care/ advice is Via a dsn at the diabetic hospital.
my gp just does prescriptions I rarely ask for advice as I seem to be " complicated " they always seem a little behind the times with how diabetes care is moving forward.

I went onto a pump the week before the first lockdown after only doing half the training but with support online and on the phone from my dsn for a month or two

My hba1c has come back at 67 my libre agrees.
Now having been diabetic nearly 30 years I know that's got room for improvement but considering I had no care whatsoever from my doctor ( and still can't have an appointment unless a nurse triages me first !!)
The part saying " guidance suggests repeat etc etc after Reinforcing (!!) Dietary and lifestyle advice and modifying treatment.
I feel insulted what a way to speak to someone it's not like we asked for it. And I'm sorry but thier advice re; carb counting was farsical ( I've since done a Dafne)
And don't even get me started on modifying treatment as we all know it changes from day to day.
Is it no wonder we feel upset and let down by Doctors and Gp's in how they speak to us.
I'm sure they'd phrase things better to addicts !!
I just wanted to scream " I've managed myself pretty much singlehanded during a pandemic give me a break !!

Thanks for reading as you guessed I feel better for venting.

 

[Robin]

The part saying " guidance suggests repeat etc etc after Reinforcing (!!) Dietary and lifestyle advice and modifying treatment

That sounds like a sentence out of a Nurse's guidance manual for people with newly diagnosed Type 2 or Prediabetes, not for a Type 1. Trouble is (with my surgery at least) they don’t see many Type 1s, and they don't really know what to do with us. Are you still under the care of the hospital (ie, not discharged back to your GP), I'd have thought you should be if you have a pump. They should have a DSN that you can speak to whenever you need to.
I was under the care of my GP, and got very little help, but I asked to be referred back to the hospital so that I could be prescribed the Libre (which I found out about through this forum, not from any input at my GP). Now I’m back in the hospital system, I was actually reminded by the doctor this morning when I had a telephone review, that I can ring a DSN any time I need to, and there’s even 24hr emergency number.

 

[Piglet]

I totally feet your pain.

for information the information GP's and medical professionals are taught about diabetes covers a page and a half of a text book so its it any wonder that the medical profession has little or no understanding of the condition.

I have been away from work for over 2 years due to a complication and been on crutches for most of this time. However I have managed to loose some weight, not as much as I would have liked , but the numbers are still going in the right direction so please do not get disheartened. continue what you are doing and with a few tweaks you will ge there.

You know how the condition works for you better than anyone else and through doing Dafne you know how and what you need to do. you can do it so little steps make things easier to achieve the bigger goal.

Good luck
Piglet

 

[Inka]

GP surgeries are often rubbish for Type 1. My GP is ok but the diabetes ‘expert’ nurse is anything but expert! She told me my HbA1C was too low - it’s not and my consultant was so annoyed they wrote to her to correct her. Her predecessor told me there was no link between Type 1 and coeliac disease. She also refused to test my thyroid because “there was no need” and Type 1 and thyroid issues were unconnected (!) She also said I must be Type 2 because only children had Type 1. I had to point out that children grew up but she still said Type 1 was mainly a childhood thing.

They only seem to know about Type 2. Ignore them. XX

 

[Deleted member 25429]

I went to my GP to have my hba1c done. My care/ advice is Via a dsn at the diabetic hospital.
my gp just does prescriptions I rarely ask for advice as I seem to be " complicated " they always seem a little behind the times with how diabetes care is moving forward.

I went onto a pump the week before the first lockdown after only doing half the training but with support online and on the phone from my dsn for a month or two

My hba1c has come back at 67 my libre agrees.
Now having been diabetic nearly 30 years I know that's got room for improvement but considering I had no care whatsoever from my doctor ( and still can't have an appointment unless a nurse triages me first !!)
The part saying " guidance suggests repeat etc etc after Reinforcing (!!) Dietary and lifestyle advice and modifying treatment.
I feel insulted what a way to speak to someone it's not like we asked for it. And I'm sorry but thier advice re; carb counting was farsical ( I've since done a Dafne)
And don't even get me started on modifying treatment as we all know it changes from day to day.
Is it no wonder we feel upset and let down by Doctors and Gp's in how they speak to us.
I'm sure they'd phrase things better to addicts !!
I just wanted to scream " I've managed myself pretty much singlehanded during a pandemic give me a break !!

Thanks for reading as you guessed I feel better for venting.

I agree with you . I was told I was no longer diabetic when I’m type 1 . Nurse rang to do my yearly check and started off going on about type 2 maybe they can’t read the notes . One said to me she’d learnt everything she knew about diabetes from a friend . Shake my head

 

[uselesspancreas]

GP surgeries are often rubbish for Type 1. My GP is ok but the diabetes ‘expert’ nurse is anything but expert! She told me my HbA1C was too low - it’s not and my consultant was so annoyed they wrote to her to correct her. Her predecessor told me there was no link between Type 1 and coeliac disease. She also refused to test my thyroid because “there was no need” and Type 1 and thyroid issues were unconnected (!) She also said I must be Type 2 because only children had Type 1. I had to point out that children grew up but she still said Type 1 was mainly a childhood thing.

They only seem to know about Type 2. Ignore them. XX

Good God and I thought I'd got it bad. That's dreadful.
Love your "diabetic children grow up" comment

 

[uselesspancreas]

Thank you all so much for your support ❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️
I've spoke to my dsn and been told to ignore the "advice" section.
And my hba1c is going in the right direction. ( Must be lower than last time- u can't remember what it was)

 

[PattiEvans]

My GP said to me years ago "You know more about T1 than I do" For which I respected her greatly. Fortunately the surgery nurse who specialises in D is very knowledgeable so we have intelligent conversations around it. I do see the hospital DSN, but she's not pump trained so not a lot of help. Once in a blue moon I see the pump Consultant who drives me potty with his old fashioned attitude regarding Hba1c and tweaking my own basal, but at least it funds my pump and I would kill anyone who tried to take me off it!

 

[mikeyB]

Robin has it right, GPs don’t see enough T1s to gain experience in treating T1. An average GP practice may have only 1 on their books, or just as likely none. I’ve got PLS. That’s a neurological condition that’s so rare most consultant Neurologists will never have seen a case.

Piglet’s comment about medical textbooks is not just ignorant, it’s insulting. Medical students in training will always spend time with a diabetes specialist in clinics. You don’t learn how to treat patients from reading textbooks, for sure.

 

[Leadinglights]

Robin has it right, GPs don’t see enough T1s to gain experience in treating T1. An average GP practice may have only 1 on their books, or just as likely none. I’ve got PLS. That’s a neurological condition that’s so rare most consultant Neurologists will never have seen a case.

Piglet’s comment about medical textbooks is not just ignorant, it’s insulting. Medical students in training will always spend time with a diabetes specialist in clinics. You don’t learn how to treat patients from reading textbooks, for sure.

There are some thing which even an experienced Consultant will have not come across very often if at all. My daughter as an obs and gynae registrar was working on New Years Eve and was involved in a 'once in a career' delivery as she was told by the Consultant.

 

[Drummer]

We used to live next door to a grocer's shop, the couple who ran it were fairly elderly and one day a woman came in with a child who was coughing. They had just come from the doctors with a bottle of cough mixture, but the poor little girl did look very ill, and she began to cough, and cough.
The wife came into the shop and said stay right there, I am calling an ambulance.
The child had whooping cough, but she was too small to do the classic intake of breath at the end of a fit of coughing.
Our neighbour had lived abroad and had lived through a whooping cough epidemic.
The doctor had never seen a case of it.
The hospital said that the child would not have lasted the night if someone had not realised how ill she was.

 

[Leadinglights]

We used to live next door to a grocer's shop, the couple who ran it were fairly elderly and one day a woman came in with a child who was coughing. They had just come from the doctors with a bottle of cough mixture, but the poor little girl did look very ill, and she began to cough, and cough.
The wife came into the shop and said stay right there, I am calling an ambulance.
The child had whooping cough, but she was too small to do the classic intake of breath at the end of a fit of coughing.
Our neighbour had lived abroad and had lived through a whooping cough epidemic.
The doctor had never seen a case of it.
The hospital said that the child would not have lasted the night if someone had not realised how ill she was.

Bit like my daughter who was taken home from work as she was so unwell and when she rang the doctor they said it's probably just sinusitis take pain killers, but her landlady called the doctor at 10pm as she was screaming in pain and he gave her a shot of antibiotic but when he returned the next morning he called an ambulance and it turned out she had meningitis. They said she lucky that she had had the dose of antibiotic. She worked in the dispensary at Boots so must have picked it up there.

 

[everydayupsanddowns]

Sorry you had a frustrating time at your GPs @uselesspancreas

Hope it feels better to have had a rant about it. 🙂

I think it’s easy (perhaps inevitable?) to get frustrated with various HCPs, even specialists, for unfortunate turns of phrase or bits of advice that don’t really fit. Diabetes can be so fickle, frustrating and individual that I guess it’s hardly surprising.

The language they use is so important, and when we are working hard at doing the best we can, but perhaps not seeing the results we are after, which is frustrating in itself!

But I have huge respect for GPs and think they do an amazing job - having to sift through the fewest of clues and questions to determine which of all the hundreds of possibilities is most likely for any set of symptoms, aches or pains. And all under significant time pressure to try to keep appointments running on time.

I bet they have just as many horror stories about nightmare patients, time wasters, and folks who behave awfully as we do about them!

 

[Leadinglights]

Sorry you had a frustrating time at your GPs @uselesspancreas

Hope it feels better to have had a rant about it. 🙂

I think it’s easy (perhaps inevitable?) to get frustrated with various HCPs, even specialists, for unfortunate turns of phrase or bits of advice that don’t really fit. Diabetes can be so fickle, frustrating and individual that I guess it’s hardly surprising.

The language they use is so important, and when we are working hard at doing the best we can, but perhaps not seeing the results we are after, which is frustrating in itself!

But I have huge respect for GPs and think they do an amazing job - having to sift through the fewest of clues and questions to determine which of all the hundreds of possibilities is most likely for any set of symptoms, aches or pains. And all under significant time pressure to try to keep appointments running on time.

I bet they have just as many horror stories about nightmare patients, time wasters, and folks who behave awfully as we do about them!

I don't think the situation is helped by the 'rules' of a practice which state 1 condition 1 appointment, as so many things are interrelated and the doctor is not getting the whole picture so making a diagnosis can be protracted.

 

[Andrew Kennedy]

I'm sorry you have had to experience this.

I too have just had my first consultation with a diabetic specialist team (only taken 5 years!!) - It felt extremely judgemental and shaming, so I can feel you pain!

Let us know how you continue to get on!

 

[Doodlebug]

I empathise completely though I've always refused point-blank to have my diabetes care with a GP purely because they're not specialists. I can recall having to show a diabetes nurse (GP based) how to prepare glucagon for injection. It's ridiculous.
It's not only that, any stay in a hospital is a problem for me. No staff seem to understand diabetes control for pump-based treatments. I've been told to switch off my pump hours before a procedure and encountered arguments with staff who didn't know type 1s don't secrete insulin. Dealing with anyone other than a diabetes specialist is exhausting. It's time the NHS got this sorted out once and for all.