Testing Strips & Meters For Type 2s...

[Vince_UK]

Why on earth has ot been a repeated topic for as long as you have been a member!!
Where are the angry, informed repeated requests from duk to change this sorry state of affaires?

The reason i dont post here much is because I dislike the (as I see it) complacent attitude of duk. There is a grudging acceptance of lchf because there has to be.( I am aware that duk is funding prof taylor, but his research is mainly about vlc and not.lchf.) . Lchf has some acceptance by duk because nobody can deny that it works.

There is support by duk of the eatwell guide. There is little "official" duk support to go another direction, any other direction, which is not nhs backed. This is even tho there is so much evidence to support a lchf diet and NOT eatwell.

Duk has been around for a long time, since 1934 and has done a lot of good things. However, it seems to have become part of the established medical.profession. . Instead of challenging accepted practice which has been seen to be wrong it calmly sits back and awaits times to.change around it. Failing to fight for.test strips.is a.prime example.

If ever the nhs mentions diabetes on tv we are referred to duk. But where are the challenges to the nhs from duk? From an outsider pov it seems as tho the nhs has no quarrel with duk at all. But an organisation that was formed to fight for the interests of diabetics should, occasionally, ( not always!!)have quarrels with a government body that does not always act in the best interest of diabetics. The nhs has many competing claims on its money. Other charities have been set up to fight for the best interests of those with they support. Duk doesn't seem to fight much. It supports as long as you agree.

As I already have said, this was the first forum I joined. I really needed help. I found very , helpful, kind people.on the forum. In the info pages I found eatwell and info about progression of t2d.

It was all.very confusing to a newbie and I am afraid that I didnt stay here. The forum is lovely. The info pages and duk not so.much.

Last nights attempt to close down this thread on a topic that it is obvious many feel passionate about was totally unacceptable. Throwing up reports and so called facts and figures is again nothing more that putting up smoke screens.
There is an issue, a serious issue that affects many people who find themselves in an unrelenting position of having to decide whether they can afford to test or not. For me it is very simple and straighforward.
Test or your health deteriorates.
If you look at the number of posts and new contributors after it was deemed as having "this discussion has come to a natural end" demonstrates it very much hasn't.
Can we develop a plan of action that eveyryone is involved in.
At the top of every page on this website is a button that says "Donate".
All well and good but in donating and participating in this venture surely we expect to be listened to, not have constructive opinions and discussions "this discussion has come to a natural end", and some signs and feedback on positive actions and how we, the people who are involved, can assist in bringing this to a satifsactory resolution.

 

[palmoff]

This is absolutely spot-on. But unfortunately, it also underlines the major problem faced by those on T2 D&E/non-hypoglycaemic meds.

NICE fully understand the cost of complications. I believe 80% of the budget on diabetes is spent on dealing with them. Which is utterly shocking since such a large proportion of that is avoidable.

BUT

When the evidence was reviewed - all of it, not just the negative stuff - they did not see the improvements in outcomes that forum members regularly show.

So for NICE the maths went like this

Cost of complications x risk = cost
vs
(Cost of complications x IDENTICAL risk) + Cost of strips = Higher Cost.

Because the evidence they reviewed showed no reduction in HbA1c (and by extension, risk) for D&E T2s.

So what we need is evidence (in the form of clinical randomised controller trials) that shows it works - if we want strips for all.

OR

We need a way of demonstrating that the ‘certain subgroups’ (sorry Bubbsie!) alluded to in the negative research that exists are actually much MUCH larger than is currently understood.

The more I think about this, the more I think strip/meter companies are the way to go. It is absulotely in their interest to get this evidence, and they have the funds to set up (expensive) RCTs.

I think Abbott would be a good bet - they already have some very good data for T2s for their Libre I think. Though I don’t know the details.

Added to this I agree that a campaign by DUK to show how important this is would be very helpful.

Nice reviewing something they dont want that's bound to be impartial lol...

The only way to know for sure if BG testing for type 2 diabetics would to be a blanket trial of all diabetic type 2's, reviewed by at least 2 universtity or independant science institutions, we should perhaps push for that.
Knowing how these studies work and how the data can be perverted to suit the cause makes this a necessity.

 

[everydayupsanddowns]

The only way to know for sure if BG testing for type 2 diabetics would to be a blanket trial of all diabetic type 2's, reviewed by at least 2 universtity or independant science institutions, we should perhaps push for that.

I’m not sure. I don’t think you could ever conduct a trial on that scale of the type that these guidelines prefer.

But maybe one or other strip manufacturer could be encouraged to set up a sufficiently large RCT, suitably ‘powered’, with a decent follow-up duration - of a year or two, that pitched ‘test-review-adjust’ style strip use, and carbohydrate reduction in line with individual results, and set it against standard care/3 monthly A1c.

It would be very interesting to see if a large more ‘random’ population saw the types of results we are used to witnessing on the forum. It seems almost certain to me that the ‘test review adjust’ arm would see significant HbA1c reduction. If it didn’t it would raise the question of what makes Forum-peeps get such good results, and whether the peer support and motivation/encouragement form an important part of the mix.

 

[Marsbartoastie]

Why on earth has ot been a repeated topic for as long as you have been a member!!
Where are the angry, informed repeated requests from duk to change this sorry state of affaires?

The reason i dont post here much is because I dislike the (as I see it) complacent attitude of duk. There is a grudging acceptance of lchf because there has to be.( I am aware that duk is funding prof taylor, but his research is mainly about vlc and not.lchf.) . Lchf has some acceptance by duk because nobody can deny that it works.

There is support by duk of the eatwell guide. There is little "official" duk support to go another direction, any other direction, which is not nhs backed. This is even tho there is so much evidence to support a lchf diet and NOT eatwell.

Duk has been around for a long time, since 1934 and has done a lot of good things. However, it seems to have become part of the established medical.profession. . Instead of challenging accepted practice which has been seen to be wrong it calmly sits back and awaits times to.change around it. Failing to fight for.test strips.is a.prime example.

If ever the nhs mentions diabetes on tv we are referred to duk. But where are the challenges to the nhs from duk? From an outsider pov it seems as tho the nhs has no quarrel with duk at all. But an organisation that was formed to fight for the interests of diabetics should, occasionally, ( not always!!)have quarrels with a government body that does not always act in the best interest of diabetics. The nhs has many competing claims on its money. Other charities have been set up to fight for the best interests of those with they support. Duk doesn't seem to fight much. It supports as long as you agree.

As I already have said, this was the first forum I joined. I really needed help. I found very , helpful, kind people.on the forum. In the info pages I found eatwell and info about progression of t2d.

It was all.very confusing to a newbie and I am afraid that I didnt stay here. The forum is lovely. The info pages and duk not so.much.

Appreciate your input and couldn't agree more.

I see from your signature line that you credit Jason Fung. He's my bloomin' hero. It was his guidance that dragged me back from the brink. Watching his YouTube presentation on 'solving the two compartment problem' was an eye-opener for me. It's good to come across another fan.

 

[palmoff]

I’m not sure. I don’t think you could ever conduct a trial on that scale of the type that these guidelines prefer.

But maybe one or other strip manufacturer could be encouraged to set up a sufficiently large RCT, suitably ‘powered’, with a decent follow-up duration - of a year or two, that pitched ‘test-review-adjust’ style strip use, and carbohydrate reduction in line with individual results, and set it against standard care/3 monthly A1c.

It would be very interesting to see if a large more ‘random’ population saw the types of results we are used to witnessing on the forum. It seems almost certain to me that the ‘test review adjust’ arm would see significant HbA1c reduction. If it didn’t it would raise the question of what makes Forum-peeps get such good results, and whether the peer support and motivation/encouragement form an important part of the mix.

Such trials have been done quite a few times, I know because I was on one of them.
Nice wanted these drugs to be the "norm" so they tested everyone for "results", hundreds of thousands, maybe millions of pounds exchanged hands I was a beta tester, along with everyone else at the time, I signed a nda, this trial resulted in all the follow on illnesses i have to date i got nothing but a poor physical health and no recourse. Politcians, drug companies, amongst others were all beneficiaries from this experiment and consquent license.
Anyway long story short if NICE wanted all type2's tested for strips it would happen, probably not enough hangers on to make it profitable.
Then again I suppose we are as much a commodity as anything else, so it makes no finicial sense to the lobbyists, charities, and the other people who gain from sick high BG type 2's to suddenly be able to look after themselves and cost next to nothing in complications.

 

[Bubbsie]

I have been waiting for progress on the situation with CGM for just as long Bubbsie. And for access to structured education (for T1s, T2s and parents of children with diabetes) and a host of other things. The wheels creak and groan, but movement is conspicuous by its absence

I hope T2 members do not feel that this issue in particular is somehow being ignored on purpose - not that I am saying you are necessarily suggesting that - just saying that there are many frustrations for people with diabetes, and many 'battles' and slow-moving organisations to be challenged on many fronts.

It's not about what you have been waiting for...it's about what we are waiting for....continue to wait for ...what are DUK waiting for before they make any movement on this.

 

[everydayupsanddowns]

It's not about what you have been waiting for...it's about what we are waiting for....continue to wait for ...what are DUK waiting for before they make any movement on this.

I prefer to count myself as part of the whole community of people with diabetes - T1, T2, LADA, MODY, IIIc and all the others. I think we are stronger together.

 

[Bubbsie]

I prefer to count myself as part of the whole community of people with diabetes - T1, T2, LADA, MODY, IIIc and all the others. I think we are stronger together.

Again...it's not about you Mike...its not about being part of the diabetic community...we all are... whether we choose to or not...it's not about demarcation between diabetic groups/types...it's about DUKs failure to listen...failure to act...when will they finally take the initiative...listen to the growing dissatisfaction from those who have expressed that here so eloquently.

 

[Northerner]

Again...it's not about you Mike...its not about being part of the diabetic community...we all are... whether we choose to or not...it's not about demarcation between diabetic groups/types...it's about DUKs failure to listen...failure to act...when will they finally take the initiative...listen to the growing dissatisfaction from those who have expressed that here so eloquently.

But DUK haven't failed to act, they have advocacy and position statements and campaigns you can join as flagged earlier.

 

[everydayupsanddowns]

Again...it's not about you Mike...its not about being part of the diabetic community...we all are... whether we choose to or not...it's not about demarcation between diabetic groups/types...it's about DUKs failure to listen...failure to act...when will they finally take the initiative...listen to the growing dissatisfaction from those who have expressed that here so eloquently.

Of course it is not about me! It is an issue much bigger than any individual as you yourself have said. But as a person affected by diabetes surely I have a right to feel affected by the way this issue impacts other people living with diabetes. To want it to change for T2s on D&E who want to use SMBG. To want to help in any way I can.

Though to be honest, any support I could offer to any campaign is not being made to feel very welcome at the moment.

 

[Bubbsie]

As @mikeyB mentioned earlier, insurers in the US generally provide strips for Type 2s - they must be basing their decision on some pretty convincing data. Or are they using the same studies as NICE, just interpreting them differently?

You'd need to ask Mikeyb to explain that...I wouldn't care to comment on the North American health care system...or another members reason for introducing that comparison...except to say that I & everyone else here...and in the UK do pay for their Health Care...it is a free service only at the point of delivery...we pay whether we need to use it or not...its funded by the tax payers... we are all tax payers in one guise or another.

 

[Vince_UK]

You'd need to ask Mikeyb to explain that...I wouldn't care to comment on the North American health care system...or another members reason for introducing that comparison...except to say that I & everyone else here...and in the UK do pay for their Health Care...it is a free service only at the point of delivery...we pay whether we need to use it or not...its funded by the tax payers... we are all tax payers in one guise or another.

I also failed to grasp the relevance of introducing the North American comparison into this discussion for what is a UK domestic issue and is affecting us, British citizens. That had me quite puzzled.

 

[Ralph-YK]

I think if one takes Insulin - you are automatically given prescription blood strips indefinitely - correct?

I've met people who are on insulin and _not_ been provided with meters nor strips.
[Edited, _not_ added. Flipping tablet. Sorry folks]

 

[Ralph-YK]

North American health care system....except to say that I & everyone else here...and in the UK do pay for their Health Care...it is a free service only at the point of delivery...we pay whether we need to use it or not...its funded by the tax payers.

There is a significant difference. NHS gets the money whether they give us the strips or not. In America there is a directly relationship between getting paid and providing strips for that patient.
Would they get the money if they didn't?

 

[Ralph-YK]

..I wouldn't care to comment on the North American health care system...or another members reason for introducing that comparison...

I also failed to grasp the relevance of introducing the North American comparison into this discussion for what is a UK domestic issue and is affecting us, British citizens. That had me quite puzzled.

There's been talk of getting evidence by providing diabetics with strips. Surly the point of MikeB's post is that they are (in America) and we could look there at the outcome? Saves waiting for someone to do tests here?

 

[Vince_UK]

There's been talk of getting evidence by providing diabetics with strips. Surly the point of MikeB's post is that they are (in America) and we could look there at the outcome? Saves waiting for someone to do tests here?

Valid point

 

[Ralph-YK]

On other forums I've frequented, if admin, mod or 'management'(?) wanted a discussion in a thread to be ended, they'd close the thread. No try, it's shut!
One site in particular, you can see a lot of active admin.

 

[Bubbsie]

[

I also failed to grasp the relevance of introducing the North American comparison into this discussion for what is a UK domestic issue and is affecting us, British citizens. That had me quite puzzled.

Vince...I'm not sure my point was about the relevance of it...just that I (any of us) can't give an opinion on what someone else may mean where there is some ambiguity...its always open to interpretation...likely @Ralph-YK has hit the nail firmly on the head here.

 

[Bubbsie]

There's been talk of getting evidence by providing diabetics with strips. Surly the point of MikeB's post is that they are (in America) and we could look there at the outcome? Saves waiting for someone to do tests here?

Good point Ralph

 

[khskel]

Also in the USA the insurance companies see it as a sound economic decision because it saves money in the longterm.