Frustrated/rant

[Gafspa]

I posted a while ago about not having any contact with diabetic team in 6 months and only diagnosed 8 months ago.

I had a phone conversation with consultant that went okay, he queried whether I was type 1 which I found worrying as shouldn’t this have been looked into months ago???

Anyway he answered a number of questions I had do on the whole was helpful. I need to go for some bloods as never had one done to see if/how much my body is producing insulin.

But what has really got my worked up is the letter about what was discussed arrived today and there’s so much incorrect information in it it’s a joke!

Cross as I explained most of the changes - I was clearly talking to myself

 

[Ronancastled]

With diabetes often the patient becomes their own practitioner.
Have you been given a formal lab HbA1c or fasting glucose ?
Do you use your own meter & have your own readings to share ?

 

[Goonergal]

With diabetes often the patient becomes their own practitioner.
Have you been given a formal lab HbA1c or fasting glucose ?
Do you use your own meter & have your own readings to share ?

I don’t think posting any of that information will help gafspa overcome her frustration and certainly won’t provide an answer as to type of diabetes.

@Gafspa I hope you get some answers. Is your GP the helpful sort that might chase / question the endo/consultant?

 

[Fairygodmother]

Hello @Gafspa, I’m sorry you’re still without any definitive answers about the kind of diabetes you may have! Are you in the U.K.? I ask because we have international members on this site.
I know that a lot of people who work in the NHS have been carrying an extra load over the pandemic, and that because of the way Covid behaves many with expertise in diabetes have been working extra hard. Your Gad and C-peptide tests are overdue. This may be a reason why you’ve had to wait so long and why the Consultant needed to find out which Type you have.
This doesn’t help you, though, and it’s beyond frustrating that the tests to analyse your own condition haven’t yet occurred. It also doesn’t help, does it, when inaccuracies suggest that we’ve not been recognised as an individual. I’m not surprised the letter left you feeling so angry.
If your blood sugars are swooping around like a mad bat then that’s not helpful either.
I hope that once everything calms down and medics, and patients, have a chance to recover and recoup that you can begin to know how best to deal with the diabetes hitchhiker that’s thumbed a lift with just about all of us here on this site.
And have a virtual hug.

 

[Gafspa]

With diabetes often the patient becomes their own practitioner.
Have you been given a formal lab HbA1c or fasting glucose ?
Do you use your own meter & have your own readings to share ?

Yes I’ve had my HbA1c done at my GP’s surgery in January and that was 47mmol.

I am planning on going for other tests tomorrow morning, including fasting blood test. I take my long lasting in the morning I’m guessing I don’t take this before my blood tests?

 

[Gafspa]

Hello @Gafspa, I’m sorry you’re still without any definitive answers about the kind of diabetes you may have! Are you in the U.K.? I ask because we have international members on this site.
I know that a lot of people who work in the NHS have been carrying an extra load over the pandemic, and that because of the way Covid behaves many with expertise in diabetes have been working extra hard. Your Gad and C-peptide tests are overdue. This may be a reason why you’ve had to wait so long and why the Consultant needed to find out which Type you have.
This doesn’t help you, though, and it’s beyond frustrating that the tests to analyse your own condition haven’t yet occurred. It also doesn’t help, does it, when inaccuracies suggest that we’ve not been recognised as an individual. I’m not surprised the letter left you feeling so angry.
If your blood sugars are swooping around like a mad bat then that’s not helpful either.
I hope that once everything calms down and medics, and patients, have a chance to recover and recoup that you can begin to know how best to deal with the diabetes hitchhiker that’s thumbed a lift with just about all of us here on this site.
And have a virtual hug.

Thank you for your lovely answer!

I think the pandemic has definitely impacted on the care I’ve received, when first diagnosed I had a number of appointments and then nothing for months.

I was so relieved to finally speak to someone that I then just felt so let down that all the majority of information held on me is incorrect! I was so cross I went over the letter with a highlighter and highlighted all the incorrect information!

 

[Fairygodmother]

Yes I’ve had my HbA1c done at my GP’s surgery in January and that was 47mmol.

I am planning on going for other tests tomorrow morning, including fasting blood test. I take my long lasting in the morning I’m guessing I don’t take this before my blood tests?

47’s a pretty good HbA1c for someone who feels they’re running blind.

 

[Gafspa]

47’s a pretty good HbA1c for someone who feels they’re running blind.

Thank you! I’ve got carb counting quite quickly and I have the same thing for breakfast and lunch everyday so it’s my evening meals that’s the curve ball but I have a young family and we tend to eat the same things each week.

I’ve learnt that complex carbs and bread aren’t great for me so I avoid and have jackets potatoes with my meals rather than pasta, rice, cous cous....
I can’t eat pizza and I need a lot of insulin for bread.

Because I’m scared of alcohol I’ve avoided that. I guess I get further into my journey and as I gained confidence I’ll become more adventurous but have been strict as scared!

I haven’t eaten out yet and that’s an experience I’m not looking forward too....

When I got those results back I didn’t know if it was good or bad or what to aim for!

 

[Dark Horse]

I posted a while ago about not having any contact with diabetic team in 6 months and only diagnosed 8 months ago.

I had a phone conversation with consultant that went okay, he queried whether I was type 1 which I found worrying as shouldn’t this have been looked into months ago???

Anyway he answered a number of questions I had do on the whole was helpful. I need to go for some bloods as never had one done to see if/how much my body is producing insulin.

But what has really got my worked up is the letter about what was discussed arrived today and there’s so much incorrect information in it it’s a joke!

Cross as I explained most of the changes - I was clearly talking to myself

It's worth contacting PALS at your local hospital with a complaint. It's best to be factual about what was discussed, what is wrong in the letter and how it made you feel. They are duty-bound to investigate the issue and find out what's gone wrong. I have seen letters where the typist has put the wrong patient's address so the wrong letter was sent to the wrong patient. Obviously, this shouldn't happen so it's important to give feedback when you discover an error so that procedures can be put in place to minimize the chances of it happening again.