Testing Strips & Meters For Type 2s...

[Bubbsie]

That's exactly the sort of work we could all get involved with...a positive channel for our energies.

Now what would we call that MBT...possibly a joint enterprise...a conspiracy of good intentions...an unlikely coincidence...or a nightmare of compromise😱😉

 

[Bubbsie]

Thanks Mike.
All "facts" in life should be challenged. The status quo challenged. We all know that facts can be made to ft theories. Basic rule of economics.
I agree data from a personnal perspective should be gathered as well as the financial and other issues people trying to manage their diabetes on limited budgets experience.
After all, isn't this about people primarily as well as costs?
So let's start gathering empircal evidence and get it structured and constructed so an inteligent arguement can be pursued and publically so.

OOh Vince...like that word...empirical...hard hitting!

 

[Kentoldlady]

I’m sorry but I don’t think that’s fair at all MBT. @Hannah DUK had gone off to get information from the relevant people at DUK, but by the time it arrived, on what had been at times a passionate and quite heated thread, @Bubbsie posted that she was choosing not to say any more on the matter (if I understood her post correctly re: ‘I choose the latter’).

I don’t think it was any attempt to stop or limit this important conversation - merely that it seemed to have ended.

The later posts show that more people had experiences to share, and I think Hannah will be pleased about that, because she can relay the strength of feeling back to DUK from the forum community.

I dont often post on this forum, but found this thread very interesting.

I found the comment entirely fair, tbh. It sounded to someone who has read the entire thing in two sittings, as tho duk did want to shut the thread down. And it was dismissive.

I find the fact that an organisation that calls itself the number one charity supporting diabetics in the uk, but so very rarely does anything to upset the official boat,quite distressing.

T2ds need to test. That is obvious to any t2d that does not trust thier hcp to give them good advice. And any gp or dn who tells a diabetic not to test is giving out bad advice that will in the end, send them blind with no feet and no kidneys. How can a diabetic charity support that? And by not shouting this from the rooftops at anyone who will listen , duk is supporting the status quo by silence. I appreciate there is a campaign. But it is a very quiet one.

I think this silence is one of the reasons I dont visit here very often, although this was the first site I joined after diagnosis. Thank you bubbsie, for showing me where my unease comes from.

 

[Vince_UK]

I dont often post on this forum, but found this thread very interesting.

I found the comment entirely fair, tbh. It sounded to someone who has read the entire thing in two sittings, as tho duk did want to shut the thread down. And it was dismissive.

I find the fact that an organisation that calls itself the number one charity supporting diabetics in the uk, but so very rarely does anything to upset the official boat,quite distressing.

T2ds need to test. That is obvious to any t2d that does not trust thier hcp to give them good advice. And any gp or dn who tells a diabetic not to test is giving out bad advice that will in the end, send them blind with no feet and no kidneys. How can a diabetic charity support that? And by not shouting this from the rooftops at anyone who will listen , duk is supporting the status quo by silence. I appreciate there is a campaign. But it is a very quiet one.

I think this silence is one of the reasons I dont visit here very often, although this was the first site I joined after diagnosis. Thank you bubbsie, for showing me where my unease comes from.

Excellent post Kentoldlady and very succinct and to the point. I believe there was an attempt to shut the thread down.

 

[SHORAN]

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

It's just those who are not on insulin and rely just on the tablets for 'control' that they tend to stop giving you blood strips. If you stop taking Gliclazide or similar - that's it; your prescribed blood strips stop.The logic presumably being - you will now no longer be at risk from Hypoglycemia so 'alls well' - no need for checking your levels any more !

This is flawed logic in my view because for example in my case - I can still get hypos even though I am no longer on Gliclazide !! ( and that's with a strict / sensible diet regime )..... and what about the other end of the spectrum - too high blood sugars Hyperglycaemia ? surely this is dangerous too - though not so much in the immediate sense like Hypos. Blood strips would tell you what was going on - if you were so inclined to try stay in the best of 'diabetic health' via diet / exercise etc. Too many Hyperglycaemia's is a recipe for unnecessary, expensive health complications down the line. The whole thing is false economics.

Just putting this to the forum - see what ideas people come up with . Helps each and one of us get a better picture before writing a letter to their GP / CCGS etc.



Shoran

 

[Vince_UK]

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

It's just those who are not on insulin and rely just on the tablets for 'control' that they tend to stop giving you blood strips. If you stop taking Gliclazide or similar - that's it; your prescribed blood strips stop. The logic presumably being - you will now no longer be at risk from Hypoglycemia so 'alls well' - no need for checking your levels any more !

This is flawed logic in my view because for example in my case - I can still get hypos even though I am no longer on Gliclazide !! ( and that's with a strict / sensible diet regime )..... and what about the other end of the spectrum - too high blood sugars Hyperglycaemia ? surely this is dangerous too though not so much in the immediate sense like Hypos. Blood strips would tell you what was going on - if you were so inclined to try stay in the best of 'diabetic health' via diet / exercise etc. Too many Hyperglycaemia's is a recipe for unnecessary, expensive health complications down the line. The whole thing is false economics.

Just putting this to the forum - see what ideas people come up with . Helps each and one of us get a better picture before writing a letter to their GP / CCGS etc.



Shoran

Perfect logic SHORAN.

 

[mikeyB]

I would be interested to know where NICE got their evidence that there was no benefit, and that supplying test strips to T2s shows no benefit or reduction in HbA1c. I don’t recall anyone on the forum being invited to take part in any trial. I suspect cherry picking of evidence.

In any event, the evidence of benefit should be freely available from the US, where all T2s are supplied with testing kits (at least, those with the appropriate insurance). If their T2s aren’t turning up at the clinics with limbs missing, then that is evidence of benefit. At the diabetes clinic yesterday, I saw an unfortunate gentleman with bilateral below knee amputations. Are US clinics full of folk like this? I very much doubt it.

Of course, it’s not just the supply of strips, it’s the education about what the results mean that is at least as important.

 

[Bubbsie]

I dont often post on this forum, but found this thread very interesting.

I found the comment entirely fair, tbh. It sounded to someone who has read the entire thing in two sittings, as tho duk did want to shut the thread down. And it was dismissive.

I find the fact that an organisation that calls itself the number one charity supporting diabetics in the uk, but so very rarely does anything to upset the official boat,quite distressing.

T2ds need to test. That is obvious to any t2d that does not trust thier hcp to give them good advice. And any gp or dn who tells a diabetic not to test is giving out bad advice that will in the end, send them blind with no feet and no kidneys. How can a diabetic charity support that? And by not shouting this from the rooftops at anyone who will listen , duk is supporting the status quo by silence. I appreciate there is a campaign. But it is a very quiet one.

I think this silence is one of the reasons I dont visit here very often, although this was the first site I joined after diagnosis. Thank you bubbsie, for showing me where my unease comes from.

Thank you so much for those comments Kentoldlady...I cannot take the credit for this thread really...there are many members who have supported this issue...questioned the lack of support... long before I arrived...credit should go to those that support from the side lines...send private messages...the members who engaged ...whether for or against the argument...those who responded as you have...it all counts...so the credit goes to the members...even those who just liked the posts...that is what counted...my intentions were simple...to offer support to members who wanted to challenge a refusal to supply testing strips...some are able to self fund... and happy to do that...some do not want to test...some do not appreciate the benefits of testing...others cannot afford to...there should not be an attitude of 'us' & 'them'...as in the ones who can have...the ones who cannot...particularly when it is based purely on economic factors...why should those on a low or fixed income be denied the opportunity to manage their diabetes...in the best way possible...I haven't seen you post often...true hopefully we will see you post here more often...what you have said is pertinent...solid...valid...exactly what I and others have tried to get across time & time again...thank you so much (again).

 

[Vince_UK]

I would be interested to know where NICE got their evidence that there was no benefit, and that supplying test strips to T2s shows no benefit or reduction in HbA1c. I don’t recall anyone on the forum being invited to take part in any trial. I suspect cherry picking of evidence.

In any event, the evidence of benefit should be freely available from the US, where all T2s are supplied with testing kits (at least, those with the appropriate insurance). If their T2s aren’t turning up at the clinics with limbs missing, then that is evidence of benefit. At the diabetes clinic yesterday, I saw an unfortunate gentleman with bilateral below knee amputations. Are US clinics full of folk like this? I very much doubt it.

Of course, it’s not just the supply of strips, it’s the education about what the results mean that is at least as important.

This whole issue appears to be a contenious issue with to many people having their own opinions. We need facts, plain and simple and an orchestrated campaign that involves everyone. We must have a C change in attitudes both internally and externally. Quite frankly, I fail to comprehend why there appears not to be 100% support for this.
The issue seems to be to many the refusal not the education.
4 weeks ago I knew nothing about diabetes, believe me I understand and know much more and how that affects me as an individual.

 

[Bubbsie]

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

It's just those who are not on insulin and rely just on the tablets for 'control' that they tend to stop giving you blood strips. If you stop taking Gliclazide or similar - that's it; your prescribed blood strips stop. The logic presumably being - you will now no longer be at risk from Hypoglycemia so 'alls well' - no need for checking your levels any more !

This is flawed logic in my view because for example in my case - I can still get hypos even though I am no longer on Gliclazide !! ( and that's with a strict / sensible diet regime )..... and what about the other end of the spectrum - too high blood sugars Hyperglycaemia ? surely this is dangerous too though not so much in the immediate sense like Hypos. Blood strips would tell you what was going on - if you were so inclined to try stay in the best of 'diabetic health' via diet / exercise etc. Too many Hyperglycaemia's is a recipe for unnecessary, expensive health complications down the line. The whole thing is false economics.

Just putting this to the forum - see what ideas people come up with . Helps each and one of us get a better picture before writing a letter to their GP / CCGS etc.



Shoran

Agree Sean...also important to consider those on diet & exercise only...some who began on medication...came off it...those who have never taken meds...they are solely reliant on Hba1c tests annually...so a once a year check is considered sufficient ...I would say even more vital for them to test on those circumstances...thanks Shoran

 

[everydayupsanddowns]

I would be interested to know where NICE got their evidence that there was no benefit, and that supplying test strips to T2s shows no benefit or reduction in HbA1c. I don’t recall anyone on the forum being invited to take part in any trial. I suspect cherry picking of evidence.

I’ll see if I can find a copy of the full guideline (I think I have one on laptop) which will list them. I am sure that Farmer eat al from 2007, 2009 and the meta-analysis from 2012(?) were used. There are parts of the stricture if some of those studies that certainly make me think “well of course it wouldn’t work like that!!”

I’m not sure if any of the other studies used a more test-review-adjust approach, but I know that they included arms with extra training and support vs those without. I will take a look and see what I can find. NICE’s process would have allowed them to limit to RCTs only if there were enough, which may mean that some more positive epidemiological (what people do in the real world) studies were excluded as RCTs are held as the ‘gold standard’. In any event, all the evidence was reviewed and analyses and they decided based on that. One Andrew Farmer was on the group that wrote the guidelines - but he may have been excluded from conversations for ‘conflict of interest’?

Of course, it’s not just the supply of strips, it’s the education about what the results mean that is at least as important.

Absolutely agree. And I think this is vital. It is the WAY forum members use strips that seems to generate the results. And I’m not sure that this has been studied well in an RCT context.

Would be great to see some progress in this in the next few years - it has been a repeated topic on the forum for as lokg as I’ve been a member!

 

[Bubbsie]

Do let us know how you get on if you take up @Hannah DUK’s offer of giving your feedback into the Test Strip Advocacy Pack stuff Bubbsie. I’m sure DUK would value your input.

Earlier this year I was approached by a member of DUK staff...asked if I would take part in their testing strips campaign...'feature on the web site'...I agreed provisionally...said I wanted to have final approval of what might be published under my details...I sent them a copy of my challenge letter...in addition to other relevant information...they wanted to summarise my 'battle' with the CCG (there had been no final decision on that yet)...again I agreed provisionally...asking for final approval before anything was published...the summary arrived with a request for a photograph for the web site...what came back was not representative of my circumstances...did not accurately portray my 'fight' with the system to get what I needed...I advised DUK I was not happy with the summary...would not be prepared to supply a photograph (for obvious reasons I have no wish to be the target of trolls or tabloid journalism)...or my location...I was invited to edit what had been written...but...not to rewrite it...I would have been happy to consult DUK on this...agree a suitable compromise...condense my experience...that was not offered...I had to decline the invitation...perhaps that will put an end to the suggestion intended or not...that I am not prepared to share my time...efforts...or experience with DUK...and its members for everyone's benefit...I had no particular desire to have to justify my reasons for not posting the letter....that was my decision..it should have been respected...however...hopefully this factual explanation will give some clarity for members & others who have expressed their confusion/frustration... at my reservations to do so.

 

[Bubbsie]

Would be great to see some progress in this in the next few years - it has been a repeated topic on the forum for as lokg as I’ve been a member!

Mike I've just realised you have been a member here since 2010...and we have still have no progress on this issue despite it being a repeated topic during that time...how that can that be...you hope to see some progress in the next few years...why?...how much longer are we expected to wait...I understand we cannot expect instant results...methodical research takes time...but...there is nothing to stop DUK from making a commitment now...investing time...listening to the dissatisfaction from its members on this issue...asking us for our opinions...that could be done now...surely?

 

[everydayupsanddowns]

Mike I've just realised you have been a member here since 2010...and we have still have no progress on this issue despite it being a repeated topic during that time...how that can that be...you hope to see some progress in the next few years...why?...how much longer are we expected to wait...I understand we cannot expect instant results...methodical research takes time...but...there is nothing to stop DUK from making a commitment now...investing time...listening to the dissatisfaction from its members on this issue...asking us for our opinions...that could be done now...surely?

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.

 

[Vince_UK]

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.

In which case the issue needs to given a higher profile snd pushed out. Where there is a will there is a way and I detect a lot of will here in this topic .

 

[everydayupsanddowns]

Earlier this year I was approached by a member of DUK staff...asked if I would take part in their testing strips campaign...'feature on the web site'...I agreed provisionally...said I wanted to have final approval of what might be published under my details...I sent them a copy of my challenge letter...in addition to other relevant information...they wanted to summarise my 'battle' with the CCG (there had been no final decision on that yet)...again I agreed provisionally...asking for final approval before anything was published...the summary arrived with a request for a photograph for the web site...what came back was not representative of my circumstances...did not accurately portray my 'fight' with the system to get what I needed...I advised DUK I was not happy with the summary...would not be prepared to supply a photograph (for obvious reasons I have no wish to be the target of trolls or tabloid journalism)...or my location...I was invited to edit what had been written...but...not to rewrite it...I would have been happy to consult DUK on this...agree a suitable compromise...condense my experience...that was not offered...I had to decline the invitation...perhaps that will put an end to the suggestion intended or not...that I am not prepared to share my time...efforts...or experience with DUK...and its members for everyone's benefit...I had no particular desire to have to justify my reasons for not posting the letter....that was my decision..it should have been respected...however...hopefully this factual explanation will give some clarity for members & others who have expressed their confusion/frustration... at my reservations to do so.

What a shame for you Bubbsie - after taking the time and effort to get involved. And a missed opportunity for sure. I had not been aware of this. I was more thinking of your comments yesterday about the gaps in the DUK advocacy pack, and Hannah's offer for you to give direct input that DUK could consider. Is that something that is happening? Or might happen? Improving those available/downloadable packs for those on D&E would be a great step I think.

As to my encouragement yesterday for you to publically share the letter, I apologise if you felt that I was a little overenthusiastic. I had understood from an earlier post that you had anonymised the letter, and it was only much later that you said that the letter you share with members still has personal details in it that you have not removed. I was simply hoping to give the letter (or more accurately the tips other users might take from it to apply to their own circumstances) wider reach. I completely respect your wishes to control of who is allowed to access it. That is entirely your choice.

 

[everydayupsanddowns]

In which case the issue needs to given a higher profile snd pushed out. Where there is a will there is a way and I detect a lot of will here in this topic .

Quite so Vince. And I think its great that now (unlike in the early years of the forum) we have a more direct line of connection to people inside DUK - who can take these key issues to the right people and share just how important they are.

 

[Kentoldlady]

I’ll see if I can find a copy of the full guideline (I think I have one on laptop) which will list them. I am sure that Farmer eat al from 2007, 2009 and the meta-analysis from 2012(?) were used. There are parts of the stricture if some of those studies that certainly make me think “well of course it wouldn’t work like that!!”

I’m not sure if any of the other studies used a more test-review-adjust approach, but I know that they included arms with extra training and support vs those without. I will take a look and see what I can find. NICE’s process would have allowed them to limit to RCTs only if there were enough, which may mean that some more positive epidemiological (what people do in the real world) studies were excluded as RCTs are held as the ‘gold standard’. In any event, all the evidence was reviewed and analyses and they decided based on that. One Andrew Farmer was on the group that wrote the guidelines - but he may have been excluded from conversations for ‘conflict of interest’?



Absolutely agree. And I think this is vital. It is the WAY forum members use strips that seems to generate the results. And I’m not sure that this has been studied well in an RCT context.

Would be great to see some progress in this in the next few years - it has been a repeated topic on the forum for as lokg as I’ve been a member!

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.

 

[everydayupsanddowns]

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.

I have to say I agree with you Kentoldlady. For many years I felt that DUK gave very bad advice for T2s, promoting the general public health messages of 'base meals on starchy carbs'. That was where effort was put in my early forum years went, to helping people newly diagnosed see that carb reduction/moderation was a very useful step.

Mercifully that seems to have changed a little and the DUK website now acknowledges that all carbs raise BG in a way that it didn't do for years.

I still have some questions over DUKs position on fat/saturated fat and cholesterol - but that's a whole different can of worms for a different thread!!

Sometimes it feels like rolling a boulder uphill, but it is great to see so much appetite to change and challenge the current situation.

 

[Bubbsie]

Just want to say a huge thank you to all who have responded to this thread...I have replied to most of the points raised...appreciated the attention it received... lets hope DUK take the initiative now...I doubt I can usefully add anything more to it...that may simply dilute the message we need to convey...having a break...going to out my feet up...relaxing.