Carb counting course.

[Lisa65]

So today I went to the "carb awareness" half day course run by the diabetes department at my local hospital. There were only three attendees as a couple of people hadn't turned up.

The course was run by a young dietician, we introduced ourselves and talked about our reasons for wanting to do the course. The other people there were a late onset T1 and another insulin dependent T2 like me.

The lady went through the basics of how to carb count, suggested the carbs and cals book/app, got us to write down the kind of meals and snacks we ate and helped us to calculate the insulin needed, a bit about correction doses and insulin /carb ratios.

The other T2 fella was on huge amounts of insulin which must have made calculation of doses hard for him. The T1 chap was guessing most of his doses and didn't know he was "allowed" to adjust his basal if he needed to, and usually tried to go to bed at 15mmol so he didn't hypo during the night.

It makes me very sad that so many diabetics are essentially left to their own devices with little or no advice. Surely more guidance in the early stages would save the NHS money in the long run by not having to treat so many complications down the line?

I didn't learn anything I hadn't already read about, but it helped to see someone else explaining it and I feel a bit more confident about starting Trurapi now. She suggested I start with a 1:10 ratio with a correction dose of 1 unit to 2-3 mmol and see how it goes.

 

[Inka]

The T1 chap was guessing most of his doses and didn't know he was "allowed" to adjust his basal if he needed to, and usually tried to go to bed at 15mmol so he didn't hypo during the night.

It’s probably all to do with time and money. When I was diagnosed with Type 1 30+ years ago, I had a visit in hospital from a consultant who explained things and answered questions. I then had a visit from a dietician who went over carbs and gave me an excellent leaflet with handy carb counts in. Now they seem to think that it makes it ‘easier’ to be told very little. It doesn’t, it just causes stress and confusion.

I hope you recommended they join this forum!

 

[Lisa65]

I did mention that DUK had a very good forum...

 

[JITR]

The T1 chap was guessing most of his doses and didn't know he was "allowed" to adjust his basal if he needed to, and usually tried to go to bed at 15mmol so he didn't hypo during the night.

It’s probably all to do with time and money. When I was diagnosed with Type 1 30+ years ago, I had a visit in hospital from a consultant who explained things and answered questions. I then had a visit from a dietician who went over carbs and gave me an excellent leaflet with handy carb counts in. Now they seem to think that it makes it ‘easier’ to be told very little. It doesn’t, it just causes stress and confusion.

To satisfy my curiosity, are the any good video 'explainers' available?

 

[Inka]

To satisfy my curiosity, are the any good video 'explainers' available?

As a Type 2, you might need different explainers @JITR Are you on insulin?

 

[everydayupsanddowns]

It’s probably all to do with time and money. When I was diagnosed with Type 1 30+ years ago, I had a visit in hospital from a consultant who explained things and answered questions. I then had a visit from a dietician who went over carbs and gave me an excellent leaflet with handy carb counts in. Now they seem to think that it makes it ‘easier’ to be told very little. It doesn’t, it just causes stress and confusion.

I hope you recommended they join this forum!

I remember having a real shock when I discovered there was a sort of “black hole” in diabetes insulin management education. When I was diagnosed I was introduced straight away to ‘exchanges’, one exchange (10g of carbs) was 1u of insulin. I said to my DSN some years later that was how I was introduced to doses (albeit they were given to me as fixed doses and fixed meal-sizes at the time). The DSN said, “Oh we don’t do that any more”.

It was a bit of a surprise to find out that they’s replaced it with basically NOTHING!

There were a lot of decades where people were given no real starting point, apart from taking “some” insulin, and eating “some” food (with no guidance given about the difference between lettuce and pasta.

That this is still going on is frankly horrifying!

I petitioned Diabetes UK at the time!

Not counting - the cost. An open letter to Diabetes UK.

Because no two days with type 1 diabetes are the same. Except when they are. The ups and downs of life with T1D.

www.everydayupsanddowns.co.uk

 

[Lisa65]

It’s probably all to do with time and money. When I was diagnosed with Type 1 30+ years ago, I had a visit in hospital from a consultant who explained things and answered questions. I then had a visit from a dietician who went over carbs and gave me an excellent leaflet with handy carb counts in. Now they seem to think that it makes it ‘easier’ to be told very little. It doesn’t, it just causes stress and confusion.

I hope you recommended they join this forum!

It still seems short sighted to me. The T1 chap was diagnosed in his late thirties and is now mid sixties, has no toes on one foot and just had a quadruple bypass after a heart attack, how much is the cost of that? Both in terms of cost to the NHS for the surgeries and to him in terms of quality of life

 

[Inka]

Yes, I was on fixed doses and fixed carbs too because I had a carb meal plan and was on twice daily injections (mixed insulin). I then branched out into adjusting my bolus insulin once I was on MDI, but the carb knowledge I was given at diagnosis made that pretty easy.

Leaving people to flounder around with no guidance is wrong. Even if they just gave them the leaflet I had and a one page sheet of basics, it would be something. I can’t believe that would cost much, and any cost would be repaid by the time saved in answering frantic phone calls from the newly diagnosed.

 

[Inka]

It still seems short sighted to me. The T1 chap was diagnosed in his late thirties and is now mid sixties, has no toes on one foot and just had a quadruple bypass after a heart attack, how much is the cost of that? Both in terms of cost to the NHS for the surgeries and to him in terms of quality of life

It sounds like he was unlucky to be diagnosed around the time they stopped/reduced carb counting education. I remember it happening and it was utterly illogical and ridiculous. I wrote to DUK about it because even they stopped listing carb counts for their recipes.

 

[JITR]

As a Type 2, you might need different explainers @JITR Are you on insulin?

No.

I had this sentence from your post in mind:

Now they seem to think that it makes it ‘easier’ to be told very little. It doesn’t, it just causes stress and confusion.

This applies equally, in general, to T2 as to T1. Granted different explainers would apply.

My question was aimed at teasing out examples of how new media could be used to provide the advice you had from your consultant 30 years ago.

 

[Lauren]

This is terrible. I had no idea people were being left with so little information on carb counting. How on earth can they be expected to manage? This is so unfair, and to have to deal with complications as a result is appalling. I am honestly shocked by this.

 

[helli]

I was diagnosed 20 years ago.
Initially, I was on mixed insulin. In the first fortnight, my DSN called me daily to go over my BG numbers and adjust my dose. There was no mention of carb counting.
After about 6 months, I was changed to basal-bolus regime but still fixed doses and no carb counting.
After another 18 months, it was suggested I tried 1 unit of NovoRapid to 15g carbs.
That was my carb counting lesson until it was discussed that I may have a pump. In my area, one of the pre-requisites for a pump is to attend a DAFNE type course. So, 12 years after diagnosis, I was taught how to carb count.
By then, I had worked most of it out myself and found the way they calculated total carbs in factors of 10 very confusing. But as my mathematical mind came up with the same number using arithmetic, it was agreed that I knew how to carb count and got a pump.
I am lucky that I am an engineer so maths and mathematical patterns come easily to me. But someone diagnosed at the same time with a different way of thinking would have really struggled.
So, sadly, the lack of information is not new. And online material such as this forum and Bertie is a huge step up from my diagnosis.

 

[PattiEvans]

I had a similar path to @helli, mixed insulin and no information. Transfer to basal/bolus and still no information. Luckily I researched it for myself after "meeting" some people on an old-fashioned newsgroup ( the forerunner of forums). I did eventually get a 2 day course to enable a pump. I think at the very least people should be pointed to the Bertie course

 

[Inka]

It really does seem it largely depends on when you were diagnosed. I wish I could remember when that silly ‘no need to count carbs’ phase was. That really annoyed me because it was so obviously rubbish. The message was that you just needed to eat healthily Of course, a healthy meal could vary enormously in carb content, so that was arrant nonsense. This was official policy because, as I said, DUK removed carb info too. I asked my DSN about it and she parrotted the ‘just need to eat healthily’ line but clearly didn’t believe it. She said many people couldn’t or wouldn’t count carbs so this was an attempt to simplify things.

Again, I don’t remember how long that phase lasted, but then there was a pause, and suddenly we were all being told how great the newly devised DAFNE was because - wait for it - it showed us how to do something they’d discovered would really help: count carbs!!!! The whole politics of it and erasure of the past idiocy really annoyed me.

 

[Lisa65]

I had a similar path to @helli, mixed insulin and no information. Transfer to basal/bolus and still no information. Luckily I researched it for myself after "meeting" some people on an old-fashioned newsgroup ( the forerunner of forums). I did eventually get a 2 day course to enable a pump. I think at the very least people should be pointed to the Bertie course

Fora like this and the old DSF are a mine of useful info for those with the motivation to take charge of their diabetes. Unfortunately I think most people don't even know that they CAN take charge, so they don't look for resources.

 

[JITR]

Fora like this and the old DSF are a mine of useful info for those with the motivation to take charge of their diabetes. Unfortunately I think most people don't even know that they CAN take charge, so they don't look for resources.

That's the problem, but the solution is not that everyone must look for resources for themselves. There is far too much information available to digest at once immediately after diagnosis. Or for GPs and DNs to keep on top of.

I'd say the Department of Health and the NHS should commission authoritative, up to date, well presented 'Handy Guides' (for want of a better name) to Type 1, Type 2 and Prediabetes. These would fill the void identified by the posts in this thread. They would be a starting point for everyone, including HCPs.

 

[nonethewiser]

Leaving people to flounder around with no guidance is wrong. Even if they just gave them the leaflet I had and a one page sheet of basics, it would be something. I can’t believe that would cost much, and any cost would be repaid by the time saved in answering frantic phone calls from the newly diagnosed.

Think we were all floundering about about initially, more so those diagnosed decades before.

But let's be honest here, with so much information freely available online about carb counting & nutritional info is there any reason for anyone to still be floundering nowadays, even library's have books available on this subject, seen them in our local.

Yes get that they'll be few who don't have access to Internet or might have trouble visiting library's & such, but for majority the help out there without a in-person course should be enough to get most up to speed on carb counting & insulin adjustments.

Will get my hard hat handy, but just needed.to say this although don't mean to offend anyone.

 

[Inka]

That’s true @nonethewiser and I do agree. I also think that the whole idea of being your own pancreas can be confusing. Some people don’t realise initially that insulin doses can vary. It can be hard to get your head round that it’s not like other medication where the doctor tells you your dose(s) and off you go. In addition, with so much talk about ‘diabetes’ where they actually mean Type 2 diabetes, some Type 1s are scared of food. I remember a newly diagnosed Type 1 saying they went low in the afternoon and how that low sugar persisted, but it became apparent that they were afraid to eat extra carbs because they thought diabetes automatically meant you had to stick to a diet plan and shouldn’t eat between meals.

I do get what you’re saying about some people not being so invested in controlling it and in researching by themselves, and it’s easier now we have the internet too.

 

[JITR]

... with so much information freely available online about carb counting & nutritional info is there any reason for anyone to still be floundering nowadays?

@nonethewiser
Yes, information overload - please see my post, the one before yours.

I just had a go at briefing myself on Type 1 and soon concluded I'd like an authoratative 'Handy Guide to Type1 Diabetes' to get started.

 

[rebrascora]

To me, good management of diabetes with insulin is all about carefully experimenting on yourself to see what works for you as an individual. Now that we have CGM I think this is a lot safer than when we could only occasionally finger prick to see what was happening and I think nurses should be encouraging people to experiment for themselves once they have a basic understanding and a bit of experience. I think I felt a little held back by "rules" like not stacking corrections and not correcting between meals and felt guilty/naughty even, when I started doing this because I felt I would be criticised for it. Same with adjusting basal doses and I think some people genuinely believe that the basal dose that their nurse gave them when they were diagnosed is what they will take for the rest of their lives and it becomes set in stone or people feel they are not qualified to change it themselves.

I do however feel that there are a lot of people out there who do not really want to engage with their diabetes and just want a nurse or doctor to tell them what to do and perhaps haven't even grasped that it can be better if they learn to make those decisions themselves.