Testing Strips & Meters For Type 2s...

[Bubbsie]

And as you say Bubbsie - there seems little solid published evidence that it works - and yet we see tonnes of positive anecdotal accounts here.

Either you have misunderstood my point...or I have failed to make it clearly...let me clarify that...since there is no reliable scientific data...surely that begs the question of...WHY NOT...the study in question received criticism for its flawed methodology...was conducted many years ago...had very limited parameters...as you point out 'there seems little solid published evidence that it works - and yet we see tonnes of positive anecdotal accounts here.'...surely that begs the question why aren't DUK & others campaigning for that to happen?...I am not part of a sub-group...or part of a certain sub-group...I find those very negative terms...I am diabetic...wanting to keep myself in the best possible health...I self monitor my blood glucose to manage my diabetes...we should all have that opportunity...at present we do not...that imbalance needs to be addressed.

 

[Bubbsie]

Yes please post the letter in open forum Bubbsie, or the lurkers will not benefit. 🙂

Sorry GM...not quite sure what you mean by that...been a long day for me already🙂...give me a heads up?

 

[Bubbsie]

Repeated and frequent visits for BG tests to the GP's might change their mind. 😱
Unfortunately becoming a pain in the derriere seems the only way to get help within the NHS atm.

Couldn't agree more palmoff (love the name)...persistence is the only way forwards.

 

[everydayupsanddowns]

Either you have misunderstood my point...or I have failed to make it clearly...let me clarify that...since there is no reliable scientific data...surely that begs the question of...WHY NOT...the study in question received criticism for its flawed methodology...was conducted many years ago...had very limited parameters...as you point out 'there seems little solid published evidence that it works - and yet we see tonnes of positive anecdotal accounts here.'...surely that begs the question why aren't DUK & others campaigning for that to happen?...I am not part of a sub-group...or part of a certain sub-group...I find those very negative terms...I am diabetic...wanting to keep myself in the best possible health...I self monitor my blood glucose to manage my diabetes...we should all have that opportunity...at present we do not...that imbalance needs to be addressed.

I realise you do not accept the scientific evidence that NICE used to write their guidance Bubbsie - you have said this before. However, I believe that members here need to understand that when NICE reviewed all the available evidence this was what they found. If they had deemed any studies too flawed to be useful, they would have excluded them. Like you I have question marks over some of the studies methods, but unfortunately we cannot change that. We have to work with it. My opinion is that it is easier for members here to go in to these conversations recognising that the evidence is stacked against them, but use the crucial gaps in the 'armour' to present individual cases.

I think the acknowledgement in the very studies that say do not test also have a part in the Conclusion stating that testing DOES work for a select number of people is exactly the sort of information people need.

"Yes I realise that NICE says it doesn't work for everyone and should not be routine, but it does work for me... and here is how... here are the results I get... here are the things I've discovered that have improved my food choices (porridge is a disaster / bananas are fine) insert your own unusual discoveries here..."

I did not mean to offend you in any way.

 

[Marsbartoastie]

It seems to me that Bubbsie's offer to privately support anyone wishing to push for BG testing supplies on prescription is extremely generous. Her reluctance to publish her letter on the open forum is, I suspect, strategic. It seems to me that she's doing her best to highlight this issue in the hope that DUK will pick up the baton and run with it. After all...DUK is far better resourced than she is.

The vast majority of those with diabetes in the UK are T2, yet DUK resources seem to be disproportionately focused on T1s. By taking a stand on this particular issue DUK could demonstrate a real and practical commitment to supporting T2s. Rather than respectfully hiding behind the same arguments that help the NHS to duck this issue, DUK should go to bat for the people they purport to represent.

 

[everydayupsanddowns]

I agree @Greymouser! Please post your letter publically Bubbsie. PLEASE!

 

[Bubbsie]

I realise you do not accept the scientific evidence that NICE used to write their guidance Bubbsie - you have said this before. However, I believe that members here need to understand that when NICE reviewed all the available evidence this was what they found. If they had deemed any studies too flawed to be useful, they would have excluded them. Like you I have question marks over some of the studies methods, but unfortunately we cannot change that. We have to work with it. My opinion is that it is easier for members here to go in to these conversations recognising that the evidence is stacked against them, but use the crucial gaps in the 'armour' to present individual cases.

I think the acknowledgement in the very studies that say do not test also have a part in the Conclusion stating that testing DOES work for a select number of people is exactly the sort of information people need.

"Yes I realise that NICE says it doesn't work for everyone and should not be routine, but it does work for me... and here is how... here are the results I get... here are the things I've discovered that have improved my food choices (porridge is a disaster / bananas are fine) insert your own unusual discoveries here..."

I did not mean to offend you in any way.

This response is negative in the extremities of it...likely to discourage members from asking for testing strips...challenging refusals...why are DUK ( I presume you are speaking for DUK here in your role as moderator...or do you speak as a member ...very difficult to see which role you occupy here)
why aren't DUK concentrating on pushing for clear...objective trials on this issue...are you able to answer that?...that is the real issue...we should be encouraged...supported...not repeatedly told we have to prove we are exceptional...there is wiggle room...we are unusual...many many type 2s are told they do not need to test...they are not given the opportunity to test... they accept that... many here had no idea about the benefits of testing until they arrived here...I hadn't...so they come here...are given good advice...told about testing (rightly so)...then comes the double whammy...well you're unlikely to get the strips...a real double negative if ever I saw one...lets have some positivity here from DUK for a change please...some real support.

 

[Bubbsie]

It seems to me that Bubbsie's offer to privately support anyone wishing to push for BG testing supplies on prescription is extremely generous. Her reluctance to publish her letter on the open forum is, I suspect, strategic. It seems to me that she's doing her best to highlight this issue in the hope that DUK will pick up the baton and run with it. After all...DUK is far better resourced than she is.

The vast majority of those with diabetes in the UK are T2, yet DUK resources seem to be disproportionately focused on T1s. By taking a stand on this particular issue DUK could demonstrate a real and practical commitment to supporting T2s. Rather than respectfully hiding behind the same arguments that help the NHS to duck this issue, DUK should go to bat for the people they purport to represent.

Well put MBT...exactly the point...I have neither the expertise...nor the resources to highlight this issue as well...or as forcefully as DUK could... as you rightly say...I cannot understand why this issue is given so little attention by DUK given that 90% of the diabetic population is type 2 and set to increase further still...I agree there is an imbalance here that needs to be addressed...proportionally is appears we are under-represented...often misrepresented by those we rely on for support...the forum is a valuable resource...its members...the majority who give their advice freely & without agenda... have a perfect right to address any issue that causes them concern...without judgement or condemnation.

 

[Marsbartoastie]

I realise you do not accept the scientific evidence that NICE used to write their guidance Bubbsie - you have said this before. However, I believe that members here need to understand that when NICE reviewed all the available evidence this was what they found. If they had deemed any studies too flawed to be useful, they would have excluded them. Like you I have question marks over some of the studies methods, but unfortunately we cannot change that. We have to work with it. My opinion is that it is easier for members here to go in to these conversations recognising that the evidence is stacked against them, but use the crucial gaps in the 'armour' to present individual cases.

I think the acknowledgement in the very studies that say do not test also have a part in the Conclusion stating that testing DOES work for a select number of people is exactly the sort of information people need.

"Yes I realise that NICE says it doesn't work for everyone and should not be routine, but it does work for me... and here is how... here are the results I get... here are the things I've discovered that have improved my food choices (porridge is a disaster / bananas are fine) insert your own unusual discoveries here..."

I did not mean to offend you in any way.

Good grief. You seem to miss the central point...that T2s should not be obliged to jump through flaming hoops to get what they need to keep themselves healthy. Testing strips should be routinely available to all who want to test. It's high time that DUK and DUK representatives got on board instead of pandering to the NHS bean-counters.

 

[Bubbsie]

I agree @Greymouser! Please post your letter publically Bubbsie. PLEASE!

I believe you've missed the sense of irony there...'or the lurkers will not benefit'

 

[everydayupsanddowns]

This response is negative in the extremities of it...likely to discourage members from asking for testing strips...challenging refusals...why are DUK ( I presume you are speaking for DUK here in your role as moderator...or do you speak as a member ...very difficult to see which role you occupy here)
why aren't DUK concentrating on pushing for clear...objective trials on this issue...are you able to answer that?...that is the real issue...we should be encouraged...supported...not repeatedly told we have to prove we are exceptional...there is wiggle room...we are unusual...many many type 2s are told they do not need to test...they are not given the opportunity to test... they accept that... many here had no idea about the benefits of testing until they arrived here...I hadn't...so they come here...are given good advice...told about testing (rightly so)...then comes the double whammy...well you're unlikely to get the strips...a real double negative if ever I saw one...lets have some positivity here from DUK for a change please...some real support.

I am very surprised with the way you are taking this Bubbsie. I can only ever speak as an individual, I am not representing DUK, nor could I. I am a volunteer moderator here, but I'm not sure what that has to do with this thread?

I think it would be very helpful for DUK to have your input on their advocacy pack, particularly where it relates to T2 on diet and exercise as you have had a good experience of being able to secure strips despite CCG reluctance. To be honest I do not know any other T2 on diet and exercise who tests 6x a day except for in an early intensive learning phase where many new food items are being evaluated and yet you have been able to secure sufficient strips per month to undertake a frequency of self monitoring significantly higher than the national average strip use of insulin users (T1 and T2).

I am simply suggesting, because it is what I believe, as things stand at the moment, that the 'do not routinely prescribe test strips for people with T2 diabetes' needs to be countered on an individual basis, case by case. Demonstrating benefit (or potential benefit) for an individual. Convincing the GP (they usually seem to be the sticking point, though I acknowledge not in your own case).

I completely agree that it would be great to have a rock solid study that showed SMBG worked across the board for people with T2 on diet only, but we don't have that now. So in the meantime we work with what we have, just as you did. In addition to Diabetes UK, I do wonder whether actually meter and strip manufacturers would be a good starting point. They have significant revenue to gain by demonstrating strips work well for more people after all. I bet Abbott or Ascensia or whoever would consider that very favourably. But that sort of overall policy change is going to be very slow moving. And in the meantime it is great that members here can get support in making their own appeals against the 'No' they may have received.

That's why I think it would be so helpful of you to post your letter here, as part of this discussion. So people can read it and use it without having to contact you privately. I'm rather at a loss as to why you don't want to share it in that way, since you are regularly and generously sharing it privately to individual members.

 

[Bubbsie]

Good grief. You seem to miss the central point...that T2s should not be obliged to jump through flaming hoops to get what they need to keep themselves healthy. Testing strips should be routinely available to all who want to test. It's high time that DUK and DUK representatives got on board instead of pandering to the NHS bean-counters.

My thoughts exactly MBT...I never wanted this to be contentious...it was just an offer to help others in difficult situations to try to get testing strips...it was never meant to be more than that...we should be discussing it...looking at ways to support members not able to fund SMBG...not diverting from the issue.

 

[everydayupsanddowns]

I believe you've missed the sense of irony there...'or the lurkers will not benefit'

How can a 'lurker', with no registered account benefit from a template letter which is only available on private request to you.

So unless you post your letter, the lurkers will not benefit.

If it were posted here a lurker, un-registered guest and anyone else who uses a search engine to try to find how to get strips on prescription with T2 would be able to read it.

I am sure you have your reasons for keeping the letter private. So I will not ask again.

 

[Bubbsie]

I am very surprised with the way you are taking this Bubbsie. I can only ever speak as an individual, I am not representing DUK, nor could I. I am a volunteer moderator here, but I'm not sure what that has to do with this thread?

I think it would be very helpful for DUK to have your input on their advocacy pack, particularly where it relates to T2 on diet and exercise as you have had a good experience of being able to secure strips despite CCG reluctance. To be honest I do not know any other T2 on diet and exercise who tests 6x a day except for in an early intensive learning phase where many new food items are being evaluated and yet you have been able to secure sufficient strips per month to undertake a frequency of self monitoring significantly higher than the national average strip use of insulin users (T1 and T2).

I am simply suggesting, because it is what I believe, as things stand at the moment, that the 'do not routinely prescribe test strips for people with T2 diabetes' needs to be countered on an individual basis, case by case. Demonstrating benefit (or potential benefit) for an individual. Convincing the GP (they usually seem to be the sticking point, though I acknowledge not in your own case).

I completely agree that it would be great to have a rock solid study that showed SMBG worked across the board for people with T2 on diet only, but we don't have that now. So in the meantime we work with what we have, just as you did. In addition to Diabetes UK, I do wonder whether actually meter and strip manufacturers would be a good starting point. They have significant revenue to gain by demonstrating strips work well for more people after all. I bet Abbott or Ascensia or whoever would consider that very favourably. But that sort of overall policy change is going to be very slow moving. And in the meantime it is great that members here can get support in making their own appeals against the 'No' they may have received.

That's why I think it would be so helpful of you to post your letter here, as part of this discussion. So people can read it and use it without having to contact you privately. I'm rather at a loss as to why you don't want to share it in that way, since you are regularly and generously sharing it privately to individual members.

Are you in moderator mode here...or replying as a member...or are the two roles interchangeable?...I won't discuss this with you further Mike...it is a diversion from the main message...which is if any here would like to try to secure testing strips...I am more than willing to help with that...as said if any would like a copy of my letter...they can PM me...I will provide a copy...if any need a hand tweaking or adapting it for their own particular circumstances I would help with that too...I am not going to be pressured by you...that is the fourth time you have asked that I publish the letter...would you please stop.

 

[everydayupsanddowns]

Good grief. You seem to miss the central point...that T2s should not be obliged to jump through flaming hoops to get what they need to keep themselves healthy. Testing strips should be routinely available to all who want to test. It's high time that DUK and DUK representatives got on board instead of pandering to the NHS bean-counters.

I completely agree with you. I really hoped that when the national guidance for T2 was reviewed in 2015 that SMBG would have been made available just as you suggest.

To anyone who wants to test and, if one were being cautious, demonstrates that they use the results of those tests to improve their diabetes management and/or quality of life on an ongoing basis.

There are some 'consensus' decisions that NICE makes where there is little evidence. But where there IS evidence, then the effectiveness or otherwise of any therapy or intervention (strips, meds, whatever) need to be measured against cost and 'quality adjusted life years'.

Until we get the research results we all so desperately want to see I'm afraid those flaming hoops are kept alight. Which is awful.

But it is VITAL for everyone reading to realise that as an individual you CAN get a positive outcome for prescription of strips/monitors for type 2s on diet and exercise. It may take persistence, and you may have to carefully build a case, but many members here demonstrate that it can be done.

 

[Vince_UK]

I am new to this but without the knowledge gained by testing I certainly would have not be able to make any sense of my condition and undertake actions to ameliorate it.
One thing that struck me square on the chin is that the costs of the testing strips, which lets not forget are ongoing consumable for a life time, are very high and for some people prohibitive. I am lucky I can self fund but even so I wince at the costs.
I, like everyone have paid into the NHS through my NI and Taxation and even now, although I am retired, I am still paying tax.
Why should people who find the costs either limiting or prohibitive not be able to access support for what basically is an essential tool in managing the condition?
Are some posters here arguing it is not? I would sincerely beg to differ on that point.
I had the belief that this forum was open to all diabetics irregardless of the type. Aren't we are all in this together and any benefits we can gain are benefits for everyone.
Scientific evidence or not, testing does help us monitor our progress and warns us when we start to drift. It can actually save someone from catastrophic physical failure. I also believe it has a positive effect on my emotional wellbeing knowing I have my BG under control.
My novice experiences suggest that diabetes cannot rely on scientifc data alone because of the individual variables we all posses and how our different bodies cope with this what is in reality a chronic condition.

 

[Marsbartoastie]

I am very surprised with the way you are taking this Bubbsie etc...

Your argument reminded me of Martin Niemoller's poem:

First they came for the Socialists, and I did not speak out
Because I was not a Socialist
Then they came for the Trade Unionists, and I did not speak out
Because I was not a Trade Unionist
Then they came for the Jews, and I did not speak out
Because I was not a Jew
Then they came for me - and there was no one left to speak for me

Perhaps you'll feel different when 'the powers that be' start trying to cut corners with your drugs and testing equipment. They could use your own rationale...that you're hardly "in an early intensive learning phase" in relation to your own condition.

 

[Robin]

Why should people who find the costs either limiting or prohibitive not be able to access support for what basically is an essential tool in managing the condition?
Are some posters here arguing it is not? I would sincerely beg to differ on that point.
I had the belief that this forum was open to all diabetics irregardless of the type. Aren't we are all in this together and any benefits we can gain are benefits for everyone.

I think we are all singing from the same hymn sheet, Vince. The differences come, I believe, in what should be done about it. On the one hand, individuals lobbying their own GPs and CCGs, in increasing numbers until there's a groundswell of public opinion working upwards, on the other hand, starting at the top with petitions and lobbying to the NHS or government, to achieve a policy change which will then cascade downwards. I suspect it needs attacking from both ends, until it meets in the middle.

 

[Vince_UK]

I think we are all singing from the same hymn sheet, Vince. The differences come, I believe, in what should be done about it. On the one hand, individuals lobbying their own GPs and CCGs, in increasing numbers until there's a groundswell of public opinion working upwards, on the other hand, starting at the top with petitions and lobbying to the NHS or government, to achieve a policy change which will then cascade downwards. I suspect it needs attacking from both ends, until it meets in the middle.

So a well defined, clear and structured strategy is needed where everyone contributes and a plan of action is developed.

 

[Bubbsie]

I am new to this but without the knowledge gained by testing I certainly would have not be able to make any sense of my condition and undertake actions to ameliorate it.
One thing that struck me square on the chin is that the costs of the testing strips, which lets not forget are ongoing consumable for a life time, are very high and for some people prohibitive. I am lucky I can self fund but even so I wince at the costs.
I, like everyone have paid into the NHS through my NI and Taxation and even now, although I am retired, I am still paying tax.
Why should people who find the costs either limiting or prohibitive not be able to access support for what basically is an essential tool in managing the condition?
Are some posters here arguing it is not? I would sincerely beg to differ on that point.
I had the belief that this forum was open to all diabetics irregardless of the type. Aren't we are all in this together and any benefits we can gain are benefits for everyone.
Scientific evidence or not, testing does help us monitor our progress and warns us when we start to drift. It can actually save someone from catastrophic physical failure. I also believe it has a positive effect on my emotional wellbeing knowing I have my BG under control.
My novice experiences suggest that diabetes cannot rely on scientifc data alone because of the individual variables we all posses and how our different bodies cope with this what is in reality a chronic condition.

Thank you Vince...for someone relatively new to this forum...and diabetes...you have grasped the point entirely...thank you so much for your input.