This will ruffle some feathers, but explains a lot

[khskel]

I can't add anything that's printable except to agree with Northie that people like Mark P are living proof that testing is a positive boon for motivated type 2s. Case studies like his should be circulated to every GP/DSN

 

[trophywench]

Yeah but who would train all these T2 diabetics who like the rellie referred to on Page 1, aren't in the slightest interested in helping themselves, since 'That's YOUR job'.

Talk to a podiatrist - they see plenty of people who haven't even washed their feet since the old queen died, let alone cut their toenails or generally paid them the slightest attention - because when they have a prob - that's the podiatrists job and I've paid my NI contributions and Income Tax so I'm entitled.

 

[Superheavy]

Hate to say it, but even as someone who is new to the whole diabetic thing, while there are some aspects of diabetic education that don't seem to be up to date (you must eat more carbs...) in terms of the result I see on my reader, being able to test myself and see which foods are causing the spikes, and then adjusting my diet accordingly, is vital to the changes I've seen. Much like Mark, without the test, I couldn't have seen how my levels go from a HBA1C with an average 11.2, down to results that sit in the 4-6 range apart from the occasional jump into the 7s. I dread to think how much the gliclazide they wanted me to take would have cost over several years, let alone the further medication costs for 3rd and 4th tier treatments, but the cost of the testing strips and device, which were prescribed, must be so much less than all the pills.

 

[Sally71]

Ah Well TW, there will always be some people who prefer to just take a pill and then stick their head in the sand and hope it will all go away. I'm sure there must be many more though who would much rather take a more active interest in the state of their health, if only they could be shown how!

 

[KookyCat]

There are plenty of T1s who don't help themselves either but they manage not to lump all of us together and assume we're all incapable (just), there will always be folk who want to close their eyes tight and shut out the reality, it's just the way it is. There will also be those who go against the tide and self fund and test. It's the middle ground, like the lady I work with, who are given the impression it's nothing serious, and they don't need to test and just need to follow doctors orders. If her doctor told her to test she would, but because she's told she doesn't need to she won't. Her A1C is way too high, and always has been, they're talking about insulin now because she's showing signs of neuropathy and retinopathy. Now the doctor's tone has changed, diabetes is a progressive condition, inevitable, insulin is the only answer, the neuropathy is progressive etc etc and she's absolutely petrified and shocked, because the there there just do as you're told approach has led to this. She's not a stupid woman, she's very bright in fact, but inordinately compliant. If she'd been shown another way she would have done it. Her lunch the other day was a tub of rice with veggies and boiled chicken, followed by two small satsuma things and a banana, just like the dietician ordered....when I asked if she enjoyed it she said no, I hate rice and fruit I'd much rather have a chicken Caesar salad and Greek yoghurt with almonds, but I'm not allowed. I nearly fell off my chair. The salad and yoghurt would be a much better choice. She's never had a weight problem before but by following their miraculous diabetic diet she's acquired a cholesterol issue, nearly a stone in weight and blood sugar through the roof after that much rice. She won't know though because she doesn't test. They won't know the error of their ways either, because progression is inevitable, nowt at all to do with their treatment protocols, no just a progressive condition. Or a self fulfilling prophecy.

 

[Northerner]

There are plenty of T1s who don't help themselves either but they manage not to lump all of us together and assume we're all incapable (just), there will always be folk who want to close their eyes tight and shut out the reality, it's just the way it is. There will also be those who go against the tide and self fund and test. It's the middle ground, like the lady I work with, who are given the impression it's nothing serious, and they don't need to test and just need to follow doctors orders. If her doctor told her to test she would, but because she's told she doesn't need to she won't. Her A1C is way too high, and always has been, they're talking about insulin now because she's showing signs of neuropathy and retinopathy. Now the doctor's tone has changed, diabetes is a progressive condition, inevitable, insulin is the only answer, the neuropathy is progressive etc etc and she's absolutely petrified and shocked, because the there there just do as you're told approach has led to this. She's not a stupid woman, she's very bright in fact, but inordinately compliant. If she'd been shown another way she would have done it. Her lunch the other day was a tub of rice with veggies and boiled chicken, followed by two small satsuma things and a banana, just like the dietician ordered....when I asked if she enjoyed it she said no, I hate rice and fruit I'd much rather have a chicken Caesar salad and Greek yoghurt with almonds, but I'm not allowed. I nearly fell off my chair. The salad and yoghurt would be a much better choice. She's never had a weight problem before but by following their miraculous diabetic diet she's acquired a cholesterol issue, nearly a stone in weight and blood sugar through the roof after that much rice. She won't know though because she doesn't test. They won't know the error of their ways either, because progression is inevitable, nowt at all to do with their treatment protocols, no just a progressive condition. Or a self fulfilling prophecy.

You've nailed it there Kooky, it's not just the motivated people getting turned down, it's all the people (would it actually be a majority?) who are told that it's 'mild' and that their near-double figure HbA1c is 'good' - until it becomes 'serious' and 'concerning' If the standard therapy was to test, with associated training and support, you may not save everyone but surely you would be providing better care and quality of life for those you did. Current advice practically amounts to negligence

 

[everydayupsanddowns]

Absolutely agree. Most of the SMBG studies assume the advice being given is right and that BG tests are just to check whether you are eating the big-tub-of-rice as advised. And if your levels are high, well... then keep eating it. Madness.

There is also a prevailing train of thought that people simply will not change the way they eat in response to the information a meter provides (and as TW points out - there are many people who will confirm this thinking!). As you say @KookyCat - an entirely self-fulfilling prophecy.

 

[@Fractis]

There are some very substantial flaws in the science being used here, as well as the implied economics.

It is based on a systematic review of many different trials (Malanda UL, et al, Cochrane Database Syst Rev. 2012 Jan 18;1:CD005060. doi: 10.1002/14651858.CD005060.pub3), and this was also used in establishing the NICE guidelines.

The review combines the results of 12 clinical trial, covering over 3,250 participants, aiming to look at all the data fairly, and drawing conclusions from all studies on the topic and overcoming concerns that individually the studies are not large enough to be significant. Whilst this review process can give us confidence about the quality of the studies covered, and in theory increased certainty from the larger number of participants, it is clear from the start that the individual studies are very varied. Not only do the studies have diverse methods (not all studies provided instructions on how and when to test), but across the studies the frequency of testing varied between 4 times a months to 6 times a day. All studies looked at HbA1c as the outcome, but there was no consistent consideration of broader outcomes such as empowerment, patient distress, satisfaction with treatment and overall quality of life.

What is clearly missing in these studies is a common approach to structured education; how to successfully use regular testing to improve the patient’s knowledge of the condition. It is only through learning from the tests that we undertake that we can hope to improve our BG control, and far too many of these studies have failed to recognise this, or equip the participants with enough test strips to be meaningful. Without the tools to identify patterns in the results, the data gathered is of little use to a patient, and we should not be surprised that average BG levels are not improved.

It is not that there is no evidence to support testing, but rather that incomplete questions are being asked and the right sort of evidence has not been gathered and interpreted. As a community such an overwhelming number of us prove that testing not only has the ability to improve our lives and clinical outcomes, but also mitigate the high costs of treating complications. Provision of test strips in conjunction with the right education about using them should be considered as a cost saving measure fro the NHS.

 

[Northerner]

We ought to get some researcher to trial what happens with GOOD education and dietary advice (i.e. the kind we see handed out, and working, on forums around the world! 🙂)

 

[Annette]

We ought to get some researcher to trial what happens with GOOD education and dietary advice (i.e. the kind we see handed out, and working, on forums around the world! 🙂)

Right, so, we need to get in touch with researchers, explain what we think they need to do, get them to write a grant proposal to DUK, offer to help out by providing in depth knowledge of how it does work in practice, and then let the academic bods run with it. How do we do that? Who do we contact? Do DUK put out calls for specific research areas, or just wait for people to come to them? (Or JDRF, or anyone else).

 

[everydayupsanddowns]

What is clearly missing in these studies is a common approach to structured education; how to successfully use regular testing to improve the patient’s knowledge of the condition. It is only through learning from the tests that we undertake that we can hope to improve our BG control, and far too many of these studies have failed to recognise this, or equip the participants with enough test strips to be meaningful. Without the tools to identify patterns in the results, the data gathered is of little use to a patient, and we should not be surprised that average BG levels are not improved.

Absolutely spot on. That's it in a nutshell.

 

[Northerner]

Right, so, we need to get in touch with researchers, explain what we think they need to do, get them to write a grant proposal to DUK, offer to help out by providing in depth knowledge of how it does work in practice, and then let the academic bods run with it. How do we do that? Who do we contact? Do DUK put out calls for specific research areas, or just wait for people to come to them? (Or JDRF, or anyone else).

I'll try and find out 🙂

 

[happydog]

Some T2s don't want to test and are reluctant to take control. For those of us who do want to try testing is essential. I would not be without it. If doctors compared the cost of the drugs and expenses incurred dealing with the complications with the cost of strips it might encourage them. Maybe light will dawn one day, we can live in hope

 

[robert@fm]

Now that it's beginning to be realised that Ancel Keys was a massive fraud whose crackpot ideas caused the obesity crisis, maybe some might come to realise that the "T2s don't need to test" mantra is a similar load of rubbish? Just as Keys carefully cherry-picked those 7 countries whose statistics appeared to support the conclusion he wanted (which is why the European ones don't include France nor Germany), so it seems that those devising guidelines for testing are interested only in studies which support their orthodoxy, and throw the rest out of the window.

This is known by the ironic name Proof by Selected Instances, and it's a logical fallacy and a dishonest arguing trick.

 

[Ralph-YK]

may cause anxiety NOT KNOWING

I'd say will, and I'd put it stronger than that.

do they not understand that for most of us if we don't have the means to check what our blood sugars are doing, the heightened anxiety from that causes untold problems including stress with it's long term damaging effects.

I've already tried telling my practice this in relation to information generally and tests in particular, including affecting motivation and causing future problems.
[Edited to make corrections]

 

[Ralph-YK]

Ancel Keys

Who?

 

[Ralph-YK]

Some T2s don't want to test and are reluctant to take control.

Some of us are English and have difficulty taking to medical people and causing a fuss. On top of not being about to talk about medical matters with them! They'd test if it was offered.

 

[Ralph-YK]

The NHS do have deal with suppliers, I think most of the major brands have been negotiated down to around £15 for 50 strips. Of course, now they are doing exclusive deals with cheap, lesser-known manufacturers so getting a better deal on them.

There's strips on Amazon at £8 for 50. Are these rubbish and shouldn't be touched with a barge pole? How come the NHS are paying £15?
There again, we're talking govenment purchasing practices.

 

[Mark Parrott]

Those strips are for the Codefree. A cheap but effective meter. Does a good enough job. I don't know why doctors/DSN's aren't prescribing these. And if they order them direct from Home Health, they do 5 pots for the price of 4, so even cheaper.

 

[robert@fm]

Ancel Keys

Who?

https://forum.diabetes.org.uk/boards/threads/the-sugar-conspiracy.58708/ — mainly the link in the first post, although the other replies are also relevant.

And as well as pushing what is now beginning to be recognised as a crackpot stance, the NHS guidelines also have separate allowances for "natural" and "added" sugar, as if one of them is somehow tagged so that the body knows to handle it differently. 🙄