Testing Strips & Meters For Type 2s...

[Marsbartoastie]

Just and Idea to throw around picking from what Mars said.
We could start an online petition, Publicise the issue, social media, news etc to the general public. Ask fellow diabetics to get involved and force a debate in the H of C if we get enough signatures. I am not sure what the criteria is as I am blocked here from and UK Gov website etc but I am sure with some brainstorming we could develop an action plan. Get local MP's involved and press as Mars states. Just a thought.

We need to get the person in charge of DUK campaigns involved. Perhaps they are unaware of how willingly members would throw themselves behind an organised campaign. May I suggest that a DUK representative invites the appropriate person to view this thread and join the discussion.

 

[Marsbartoastie]

For me it is really rather simple.
September 28th diagnosed, BG Level 7.8 , weight 98 kilos
October 21st BG levels constant between 4 and 5, weight 91 kilos.
This maintenance of and reduction in my BG levels could not have been achieved without testng
Very simple statement of fact and I defy anyone to dispute that.
I feel I am living proof that testing works and is essential.

Me too VInce. I think the stats in my signature tell their own story. They certainly would not have been achieved or maintained without testing.

 

[Bubbsie]

For me it is really rather simple.
September 28th diagnosed, BG Level 7.8 , weight 98 kilos
October 21st BG levels constant between 4 and 5, weight 91 kilos.
This maintenance of and reduction in my BG levels could not have been achieved without testng
Very simple statement of fact and I defy anyone to dispute that.
I feel I am living proof that testing works and is essential.

Couldn't agree more Vince...there's the information they should be considering...and there are so many more here & elsewhere that could testify to that...tempted to say 'amen' here...to evangelical per chance?

 

[Bubbsie]

Patronising was the word that sprang to mind.

Dismissive possibly?

 

[Bubbsie]

We need to get the person in charge of DUK campaigns involved. Perhaps they are unaware of how willingly members would throw themselves behind an organised campaign. May I suggest that a DUK representative invites the appropriate person to view this thread and join the discussion.

Great idea MBT...hope someone is listening.

 

[everydayupsanddowns]

Thanks Hannah.
I have firmly arrived at the conclusion based on my own short-term experiences and the benefts I have gained from testing that monitoring BG levels is an essential part of diabetes management. I also accept that many people find the ongoing costs of strips prohibitive. The costs of meters and strips quick frankly shocked me and jolted me into a realisation that these are not inexpensive items..
I have grasped the simple fact that diabetes, and in particular T2 perhaps doesn't get the exposure in the public domain it should get. That is not a criticism, just my observation and the lethargic attitude and apparent belief by people in general that is not serious, could never happen to me and it is your own fault. To me that is a narrow minded perspective and lack of education as to how Diabetes develops. I, for one until I deveoped it, paid zero attention to the risks and had the "not me" philpsophy.
I am now acutely aware that complication from diabetes can present a significant drain on our already over stretched NHS service. I have no idea what the costs could be, but is can only be high. Allowing people with T2 to acquire meters and strips, maintain and monitor their BG levels thus avoiding the need for costly in patient treatments or carers etc. then it should be rigourously pursued and lobbied for at the highest level. It has to be the more cost effective alternative.

Absolutely agree Vince. Well put.

Wow! Such a lot of new contributions since last night. Great to hear personal stories of success from new members.

 

[Bubbsie]

Me too VInce. I think the stats in my signature tell their own story. They certainly would not have been achieved or maintained without testing.

Well I would say proof positive MBT...but...what would I know😉.

 

[Bubbsie]

Fag packet math, this probably a massive underestimation
Cost of amputee/blind person on benefits = around £1000 per month, then loss of earns from same person and your maybe looking toward an average £2-3k now .
Cost so far per month £3.5k.
Then cost of op itself around 20k for an average amupation
verses £20-50 per month in test strips
cost per year for £50 strips = £600
5 years = £6000
It's a pretty bad arguement by nice et-al that strips cost too much.

palmoff...I did laugh when I read this...brilliantly put...concise...not much any here could/would argue with...great comparisons...good work.

 

[Bubbsie]

Heartening to see so much input here..so much.support...a refusal to be distracted...great to see all those who put their 'heads above the parapet' figuratively speaking...comment...engage...insist...its been hard work for us all...but...satisfying.

 

[everydayupsanddowns]

That may be the only way forward Vince, because the DUK input on this thread has attempted to wrap up any discussion by suggesting that it has come to a "natural end". Subsequent posts would seem to prove otherwise.

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.

 

[everydayupsanddowns]

We need to get the person in charge of DUK campaigns involved. Perhaps they are unaware of how willingly members would throw themselves behind an organised campaign. May I suggest that a DUK representative invites the appropriate person to view this thread and join the discussion.

Great idea MBT, I’m sure DUK staff who are members of the forum can relay the strength of feeling in this thread to the relevant teams.

 

[Northerner]

We need to get the person in charge of DUK campaigns involved. Perhaps they are unaware of how willingly members would throw themselves behind an organised campaign. May I suggest that a DUK representative invites the appropriate person to view this thread and join the discussion.

As has already been mentioned, DUK do have a campaign already:

https://www.diabetes.org.uk/Get_involved/Campaigning/Test-strip-campaigning

 

[Bubbsie]

I hadn't noticed any heated discussion MBT...I didn't imply...state...or decide this thread had ended...believe that was a comment made by another ...whether the thread had ended would be the decision of the members here...not mine...when there is nothing more to say..no doubt.this thread will come to its natural conclusion...I simply said I would not engage in contention or statistics...nothing more...I am sure Hannah who has been included here is able to explain her position when available to...can respond as she needs/wants to...lets everyone keep to the issue here...testing strips for T2s...let not be distracted by diversions...stick to the brief.

 

[everydayupsanddowns]

Fag packet math, this probably a massive underestimation
Cost of amputee/blind person on benefits = around £1000 per month, then loss of earns from same person and your maybe looking toward an average £2-3k now .
Cost so far per month £3.5k.
Then cost of op itself around 20k for an average amupation
verses £20-50 per month in test strips
cost per year for £50 strips = £600
5 years = £6000
It's a pretty bad arguement by nice et-al that strips cost too much.

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.

 

[everydayupsanddowns]

Thank you to all who have given responses to this issue...they are very much appreciated...as always this issue provokes much debate & discussion...with differing opinions...clearly there are two sides to every story...each side has a right to put their point of view...I have no wish to engage in a discussion about division or statistics... I do not want this thread to be closed because it has become too contentious...we've each had our say...we each choose whether to respond or not...I choose the latter.

This was the post I was thinking of Bubbsie...

Where you said, “we've each had our say...we each choose whether to respond or not...I choose the latter”

I interpreted it to mean you felt you had had your say and did not intend to respond further. The thread had also seen a drop in posting frequency, I think.

I referred to the thread as ‘heated’ because some posts in it were reported by members, and it was noticed by moderators as a hot topic.

 

[Vince_UK]

As has already been mentioned, DUK do have a campaign already:

https://www.diabetes.org.uk/Get_involved/Campaigning/Test-strip-campaigning

Ok Great There is campaign
Is there an update progress report that all can see?
What bottlenecks have been encountered?
Have these been overcome?
What are the next steps?
Is there a feedback loop to this forum and the Members ?
Or
Do we have to go searcing for this information?
For my part it should be reported and commmuncated to all and especially this forum.
Just my thoughts.

 

[everydayupsanddowns]

Great idea MBT...hope someone is listening.

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.

 

[Vince_UK]

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.

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.

 

[Marsbartoastie]

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 frpm a personnal perspective should be gathered as well as the financial and other issues people trying to manage their diabetes on limited budgets.
After all, isn't this about people primarily as well as costs?
So let's start gathering empircal evidence and get it structured and cosntructed so an inteligent arguement can be pursued and publically so.

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

 

[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.

I and many other members here ...would... I believe value & benefit from their input...any input from DUK ...some input from them so much more...as evidenced by the numerous responses asking for that.