# Testing Strips & Meters For Type 2s...



## Bubbsie (Oct 20, 2017)

So far this week I have been asked by two members if I could help them to challenge the refusal by their GPS/DSNs to supply testing strips on prescription for type 2 members non-dependant on hypo inducing medication ...such as insulin or Glicalazide... many of you know this is an issue I feel passionate about...it often provokes much debate & discussion amongst members on the forum...if anyone would like to try to get their GPS...DSNs to provide strips & a meter...I would be happy to supply a copy of my letter...which could easily be adapted to suit your own personal circumstances...all identifying details of doctors...members of my local Clinical Commissioning Group and others involved  have been removed...so it does not breach the forum guidelines...it is important we are given the opportunity to self monitor our blood glucose...to give ourselves the best chance of managing/controlling our diabetes...important we are included in the grand scheme of things...any members wanting some guidance...a copy of the letter...please PM me.


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## everydayupsanddowns (Oct 20, 2017)

Why not share the letter here @Bubbsie? Then everyone can see it without having to bother you?


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## Bubbsie (Oct 20, 2017)

everydayupsanddowns said:


> Why not share the letter here @Bubbsie? Then everyone can see it without having to bother you?


Thank you Mike... it's absolutely no bother for me...as you know this is an issue I feel strongly about...many of us here do...so I am prepared to invest my time into it...I have sent a copy of the draft letter to Hannah at DUK for her information.


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## everydayupsanddowns (Oct 20, 2017)

That’s very kind of you @Bubbsie, but I think it would be a very helpful thread if you posted it here. Then everyone can get the benefit of it, even if not confident to contact you, just lurking on the forum without registering or whatever. 

It would also allow other members who have successfully managed to secure test strips on prescription from reluctant surgeries to add their own ideas and the things they said. 

Could be a very useful thread, and possible sticky?

Seems odd to keep it hidden when you are already sharing it so generously.


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## Ditto (Oct 20, 2017)

I feel strongly too, they should provide meters and strips, the very cheapest of course because the NHS is cash strapped at the minute, but if people are paying in all their lives then they should reap the rewards when they are in need. I have to sell something on ebay before I can order more strips! I'm running out of control as it is, without measuring I'd be even worse, I know this.


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## Bubbsie (Oct 20, 2017)

Ditto said:


> I feel strongly too, they should provide meters and strips, the very cheapest of course because the NHS is cash strapped at the minute, but if people are paying in all their lives then they should reap the rewards when they are in need. I have to sell something on ebay before I can order more strips! I'm running out of control as it is, without measuring I'd be even worse, I know this.


Ditto...you can ask for them...justify your need...be more than happy to help if needed.


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## Ditto (Oct 20, 2017)

There'd be no chance, it's the same doc (who is excellent with everything else) who fobbed me off when I mentioned my bloated tum so there'd be no chance. He just told the receptionist "She doesn't need them."


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## Bubbsie (Oct 20, 2017)

Ditto said:


> There'd be no chance, it's the same doc (who is excellent with everything else) who fobbed me off when I mentioned my bloated tum so there'd be no chance. He just told the receptionist "She doesn't need them."


Ditto...you're made of sterner stuff than that...besides...his approach to any of your health problems seems so dismissive...can you see another doctor at the practice...we can book an appointment online with any of the other GPs there...quite happy with mine...but could be a possibility for you?


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## Radders (Oct 20, 2017)

Ditto said:


> There'd be no chance, it's the same doc (who is excellent with everything else) who fobbed me off when I mentioned my bloated tum so there'd be no chance. He just told the receptionist "She doesn't need them."


Don't give up!


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## Bubbsie (Oct 20, 2017)

Radders said:


> Don't give up!


Precisely Radders...Ditto take note.


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## everydayupsanddowns (Oct 20, 2017)

If anyone else with T2 on diet-and-exercise or metformin has changed their Dr's mind about test strips has any tips for strategies/suggestions that others can use to build their own 'case' this would be a great thread to share them on here.

What information did you take?
Did you use results you had already obtained by self-funding to convince them?
Did you use any resources from Diabetes UK or anywhere else?
Did you mention clinical research or NICE guidelines?
What was the outcome - how many strips per month are you prescribed?
Were there any conditions/follow up/review periods that you agreed?


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## palmoff (Oct 20, 2017)

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.


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## Diabetes UK (Oct 20, 2017)

@Bubbsie it would be great for you to share your letter so that others can see the approach you took in successfully challenging your GP's decision regarding the provision of test strips. Knowing that you were successful is a positive message to anyone else who may be in the process of challenging their GP.


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## Diabetes UK (Oct 20, 2017)

everydayupsanddowns said:


> If anyone else with T2 on diet-and-exercise or metformin has changed their Dr's mind about test strips has any tips for strategies/suggestions that others can use to build their own 'case' this would be a great thread to share them on here.



Yes - be really great to hear if anyone else has been successful and what approaches have been taken?


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## Bubbsie (Oct 20, 2017)

I would welcome contributions from any members on this matter....be wonderful to finally get some momentum going on this testing (pun intended) issue...a far as I am aware the often quoted excuse/response members in our circumstances (those refused) receive...  is there is no solid scientific/clinical data available that demonstrates type 2s non dependant on hypoglycaemia medication benefit from self monitoring their blood glucose (SMBG)..apart from  the study where type 2s were all placed on the same diet for a set period without testing...then provided testing strips for SMBG...kept on exactly the same diet...the study showed no improvement in their blood sugars...hardly surprising since the necessity of SMBG is that we try different foods...assess how they affect our blood sugars...appears that particular study was set up to fail from the concept...can't recall the name of that particular study...if anyone can point me in the right direction...could publish the link....I have checked the advocacy pack from the DUK website...it could be better...members should not be worried about reading the NICE guidelines...or the Clinical Commissioning Groups directives on this...they are fairly easy to follow...fairly straight forward...useful...we should all consult them...any account of a challenge would be productive...successful or otherwise...would like to know who the challenge was directed to your...GP...DSN...or the CCG...good to see this thread receiving attention...thank you Mike...lets hope that continues.


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## Bubbsie (Oct 20, 2017)

Hannah DUK said:


> @Bubbsie it would be great for you to share your letter so that others can see the approach you took in successfully challenging your GP's decision regarding the provision of test strips. Knowing that you were successful is a positive message to anyone else who may be in the process of challenging their GP.


Thank you Hannah...have to work through some emails for the next hour or so...will certainly give that some thought...just for clarification...my GP was perfectly willing to provide a meter...put me on a repeat prescription for testing strips...he cautioned that the local CCG were lkiely to question that...stop the repeat...my challenge was made directly to my local Clinical Commissioning Groups Chair...which as you are aware was successful.


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## everydayupsanddowns (Oct 20, 2017)

Bubbsie said:


> can't recall the name of that particular study...if anyone can point me in the right direction...



Do you mean Farmer et al? One of a series of SMBG studies which showed no effect, or even worse a negative effect (depression) to a number of different ways of using self-monitoring in people with T2 on D&E or Metformin.

It's important to recognise that the scientific evidence is not in favour of T2s self monitoring (unless on insulin etc) because that is where the resistance comes from. And as you say Bubbsie - there seems little solid published evidence that it works - and yet we see tonnes of positive anecdotal accounts here.

BUT (and it is a massive 'but') one of the later Farmer paper's mentions 'certain subgroups' for whom SMBG in T2 on diet alone *can* be beneficial. So in my opinion it's a matter of acknowledging the evidence that exists that 'it won't work for everyone', but creating a compelling case that demonstrates that you as an individual are one of the 'certain subgroups' for whom self-monitoring is highly cost effective. That you use each BG check to improve your care, and when you need fewer, you will happily use fewer to help the GPs budget.

*Please* get the ball rolling by posting your letter Bubbsie. I'm sure it would help others share their ideas.


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## Diabetes UK (Oct 20, 2017)

Bubbsie said:


> Thank you Hannah...have to work through some emails for the next hour or so...will certainly give that some thought...just for clarification...my GP was perfectly willing to provide a meter...put me on a repeat prescription for testing strips...he cautioned that the local CCG were likely to question that...stop the repeat...my challenge was made directly to my local Clinical Commissioning Groups Chair.



So sounds like you had the support of your GP which is great, the issue in your case was with your CCG. Others may be experiencing refusal from their GP as well, but ultimately, the CCG is where the blanket decision is likely to come from.
As you mentioned, we have an advocacy support pack on the matter, but you feel that we could improve on this?
We also an online action form, which allows you to write to local health bosses to raise and challenge any restrictions you have faced if anyone wants to help raise the issue in their local area:
https://www.diabetes.org.uk/Get_involved/Campaigning/Test-strip-campaigning


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## Bubbsie (Oct 20, 2017)

Hannah DUK said:


> So sounds like you had the support of your GP which is great, the issue in your case was with your CCG. Others may be experiencing refusal from their GP as well, but ultimately, the CCG is where the blanket decision is likely to come from.
> As you mentioned, we have an advocacy support pack on the matter, but you feel that we could improve on this?
> We also an online action form, which allows you to write to local health bosses to raise and challenge any restrictions you have faced if anyone wants to help raise the issue in their local area:
> https://ww.diabetes.org.uk/get_involved/campaigning/test-strip-campaigning


Hannah I believe there could be improvement to the advocacy pack...any improvement would be welcome...I have sent you a message on this thread.


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## Greymouser (Oct 20, 2017)

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


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## Bubbsie (Oct 20, 2017)

everydayupsanddowns said:


> 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.


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## Bubbsie (Oct 20, 2017)

Greymouser said:


> 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?


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## Bubbsie (Oct 20, 2017)

palmoff said:


> 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.


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## everydayupsanddowns (Oct 20, 2017)

Bubbsie said:


> 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.


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## Marsbartoastie (Oct 20, 2017)

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.


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## everydayupsanddowns (Oct 20, 2017)

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


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## Bubbsie (Oct 20, 2017)

everydayupsanddowns said:


> 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.
> 
> ...


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.


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## Bubbsie (Oct 20, 2017)

Marsbartoastie said:


> 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.


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## Marsbartoastie (Oct 20, 2017)

everydayupsanddowns said:


> 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.
> 
> ...


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.


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## Bubbsie (Oct 20, 2017)

everydayupsanddowns said:


> 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'


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## everydayupsanddowns (Oct 20, 2017)

Bubbsie said:


> 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.


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## Bubbsie (Oct 20, 2017)

Marsbartoastie said:


> 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.


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## everydayupsanddowns (Oct 20, 2017)

Bubbsie said:


> 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.


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## Bubbsie (Oct 20, 2017)

everydayupsanddowns said:


> 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).
> 
> ...


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.


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## everydayupsanddowns (Oct 20, 2017)

Marsbartoastie said:


> 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.


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## Vince_UK (Oct 20, 2017)

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.


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## Marsbartoastie (Oct 20, 2017)

everydayupsanddowns said:


> 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.


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## Robin (Oct 20, 2017)

Vince_UK said:


> 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.


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## Vince_UK (Oct 20, 2017)

Robin said:


> 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.


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## Bubbsie (Oct 20, 2017)

Vince_UK said:


> 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?
> ...


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.


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## Diabetes UK (Oct 20, 2017)

Bubbsie said:


> ..why aren't DUK concentrating on pushing for clear...objective trials on this issue....



Understandably, this is always such a hot topic when raised in this forum.

It is disappointing when individuals who do not manage diabetes with insulin, are told that testing is not necessary. Diabetes UK do highlight the benefits of testing when newly diagnosed and absolutely agree that tight glycaemic control is beneficial in avoiding complications further down the line. The issue from the statements from NICE, as you have highlighted, come from a lack of clinical evidence.

Our position statement on self-monitoring for adults with type 2 diabetes, confirms that the lack of clinical evidence means that it has not been possible to gather enough quantifiable data to _support_ the argument that testing will significantly improve diabetes management and quality of life. However, Diabetes UK are not adverse to funding research for this. 

@Bubbsie - I believe Diabetes UK has had correspondence with you previously on this matter of funding research and we approached our Research Team who stated that, "..if we were to receive a research proposal, with a valid and measureable research criteria, it would be considered for funding and assessed based on the strength of the proposal." This is down to the fact that our Research Team work reactively, considering the proposals which are submitted to them (see Our Approach to Research). The team do not decide what subjects to research, nor do they set proposal. Research studies are submitted and are assessed through an extensive process, based on a number of criteria.


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## Marsbartoastie (Oct 20, 2017)

Vince_UK said:


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


Yep...and DUK has the resources to lead from the front and use the mass lobbying power of thousands of members.


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## Diabetes UK (Oct 20, 2017)

Vince_UK said:


> 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. .



Absolutely @Vince_UK


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## Bubbsie (Oct 20, 2017)

Robin said:


> 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 said:


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


Believe we are all singing from the same hymn sheet here...agree with you both...we do need a plan of action...given the ever increasing rise of diabetes we need to be proactive...pushing this matter forward...thank you both.


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## Diabetes UK (Oct 20, 2017)

Marsbartoastie said:


> Yep...and DUK has the resources to lead from the front and use the mass lobbying power of thousands of members.



Exactly, and the test strip campaign is been a major focus of Diabetes UK for some time. Pressuring decision makers at every level and asking the support of people to continuously put pressure on local decision members will help to drive change.


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## Vince_UK (Oct 20, 2017)

Thanks Bubbsie. I just don't see the point of the conflict within a group of people who all, irregardless of state, should share the same goals and be supportive for the common good.
Diabetes is a chronic and life changing condition and we should all remember that. It has certainly changed my life both in positive and negative ways. I cannot for example, just pop into Burger King or a Pizza place on my way home. I have to think and then settle for a tin of sardines, as I have just done, because the alternative just doesn't bear thinking about.
Testing and the associated benefits I have already outlined have played a vital role in my understanding of exactly what condition I have and, more importantly, how to manage it.
I shudder to think what I would have done and where I would be if I had not been able to fund either the meter or the strips.
It would have been like driving down a German autobahn at 200 miles an hour, blindfolded.


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## Bubbsie (Oct 20, 2017)

Hannah DUK said:


> Understandably, this is always such a hot topic when raised in this forum.
> 
> It is disappointing when individuals who do not manage diabetes with insulin, are told that testing is not necessary. Diabetes UK do highlight the benefits of testing when newly diagnosed and absolutely agree that tight glycaemic control is beneficial in avoiding complications further down the line. The issue from the statements from NICE, as you have highlighted, come from a lack of clinical evidence.
> 
> ...


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## palmoff (Oct 20, 2017)

Someone should find out what is the average cost of aputation and follow-up therapy, loss of earnings, cost of amputee on state benefits vs average cost of meter and test strips then present this to the various commissioning groups within the nhs seeing as Money is the driving factor to them.
I'm pretty sure an amputee would be more costly than a diabetic using test strips..
Oh and other things like blindness caused by diabetes, all of which compound cost of mal-treatment of diabetes vs test strips.
Maybe also find out numbers of type 2 having suffered life changing complications as a result of high BG vs type 1's


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## Bubbsie (Oct 20, 2017)

Hannah DUK said:


> Exactly, and the test strip campaign is been a major focus of Diabetes UK for some time. Pressuring decision makers at every level and asking the support of people to continuously put pressure on local decision members will help to drive change.


Only in respect of those who use hypoglycaemic medication Hannah...so in saying that...there is clearly demarcation here in the veracity of that campaign...those of us non-dependant on hypo inducing medication are directed to the advocacy pack which is limiting...the campaign was not universal in its approach.


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## Bubbsie (Oct 20, 2017)

palmoff said:


> Someone should find out what is the average cost of aputation and follow-up therapy, loss of earnings, cost of amputee on state benefits vs average cost of meter and test strips then present this to the various commissioning groups within the nhs seeing as Money is the driving factor to them.
> I'm pretty sure an amputee would be more costly than a diabetic using test strips..


Precisely palmoff...absolutely no economic sense at all...how ironic if I had let my control slip...if complications set in...my GP could refer me to whatever specialist department necessary without reference to the CCG...when I first saw him...he offered me anti-depressants...again on the second occasion...fortunately I have never suffered with depression...so declined...however on reflection possibly one of the few medications he could justify without recourse to my local CCG...great point you made ...succinctly put...thank you.


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## Diabetes UK (Oct 20, 2017)

The resources from Diabetes UK support that all individuals should have access to test strips, regardless of what diabetes type.
 As has been mentioned above - we are in this together and this is a matter that concerns all.


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## Vince_UK (Oct 20, 2017)

Hannah DUK said:


> Exactly, and the test strip campaign is been a major focus of Diabetes UK for some time. Pressuring decision makers at every level and asking the support of people to continuously put pressure on local decision members will help to drive change.


I therefore have questions and again forgve my ignorance. What is the status of the campaign and what forward steps have been achieved? How is the campaign structured and managed? What success so far?


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## palmoff (Oct 20, 2017)

You never get anywhere with nhs bean counters unless you supply the facts and figures, My own gp suggested I only test once a week on insulin I just reminded him that complications from having BG's in the high 20's could cost him more in the long run, he agreed to let me have 150 test strips a month after that.


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## Diabetes UK (Oct 20, 2017)

Vince_UK said:


> I therefore have questions and again forgve my ignorance. What is the status of the campaign and what forward steps have been achieved? How is the campaign structured and managed? What success so far?



I will speak to our Policy & Campaigns team for further information on this for you.
In the meantime, you can read about the campaign here.
And, view our latest report here.


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## Vince_UK (Oct 20, 2017)

Hannah DUK said:


> I will speak to our Policy & Campaigns team for further information on this for you.
> In the meantime, you can read about the campaign here.
> And, view our latest report here.


Thanks Hannah and I look forward to further information as I am sure everyone does.


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## Bubbsie (Oct 20, 2017)

Vince_UK said:


> Thanks Bubbsie. I just don't see the point of the conflict within a group of people who all, irregardless of state, should share the same goals and be supportive for the common good.
> Diabetes is a chronic and life changing condition and we should all remember that. It has certainly changed my life both in positive and negative ways. I cannot for example, just pop into Burger King or a Pizza place on my way home. I have to think and then settle for a tin of sardines, as I have just done, because the alternative just doesn't bear thinking about.
> Testing and the associated benefits I have already outlined have played a vital role in my understanding of exactly what condition I have and, more importantly, how to manage it.
> I shudder to think what I would have done and where I would be if I had not been able to fund either the meter or the strips.
> It would have been like driving down a German autobahn at 200 miles an hour, blindfolded.


I agree Vince.


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## Bubbsie (Oct 20, 2017)

Hannah DUK said:


> The resources from Diabetes UK support that all individuals should have access to test strips, regardless of what diabetes type.
> As has been mentioned above - we are in this together and this is a matter that concerns all.


I hope so indeed Hannah...however I have never seen any evidence of that in the recent campaigns...or the responses to previous questions on this topic...I want to be included in the diabetes equation...along with all the others asking for the necessary equipment...nothing more.


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## Greymouser (Oct 20, 2017)

Bubbsie said:


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



I mean: copy and paste it right here in the forum, rather than people having to ask you. If it is just a passing random person, too shy to post, they will miss excellent advice otherwise. Unless of course you have already posted it somewhere and I have missed it.


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## Bubbsie (Oct 20, 2017)

Greymouser said:


> I mean: copy and paste it right here in the forum, rather than people having to ask you. If it is just a passing random person, too shy to post, they will miss excellent advice otherwise. Unless of course you have already posted it somewhere and I have missed it.


With you now Greymouser...however want to have some degree of control of it...who has access to it...want to ensure they are registered members.


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## Greymouser (Oct 20, 2017)

Bubbsie said:


> With you now Greymouser...however want to have some degree of control of it...who has access to it...want to ensure they are registered members.



Sorry I do not understand, if you posted it, it would show on search engines too. Nevermind, I too will not ask again.


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## Bubbsie (Oct 20, 2017)

Greymouser said:


> Sorry I do not understand, if you posted it, it would show on search engines too. Nevermind, I too will not ask again.


Greymouser...my offer was made to registered forum members...some may need help adapting the letter...moreover since it contains a lot of personal information I do not want it published on the internet... I have decided to supply it on request to members here..without any control over who has access to it...I have no wish to be subjected  the kind of adverse attention type 2s regularly receive from tabloid journalism...trolls... others who may use the opportunity for negative purposes.


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## AJLang (Oct 20, 2017)

Bubbsie obviously up to you what you do with your letter but I am confused. Surely the more people that see/use the letter, whether or not they are registered members, then the more diabetics that could benefit from getting testing strips and the more that GPs would recognise the benefits of testing.I thought that was what was wanted?


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## Amigo (Oct 20, 2017)

Just a few observations from me, a type 2 diet controlled member who tests as many times as Bubbsie per day (with very good effect in terms of demonstrable diabetic management) and who receives testing strips without question from my GP. I do accept however that I have other serious health conditions which may make the surgery more amenable to me because infection and diabetic control is inextricably linked. This issue applies to many of our members too which is why the fight needs to start individually with the GP surgery and CCG. I’ve read the guidelines and it doesn’t say that testing strips shouldn’t *ever* be provided simply that it shouldn’t be routinely done. So there’s room for manoeuvre.

I applaude Bubbsie’s passion for this issue because I suspect she’s fighting the tide on this. I can appreciate why she wouldn’t want to post her ‘challenge letter’ on here for strategic reasons as MBT has said. Stock letters lose their potency. Her offer is to help members affected on an individual basis and this seems to align with the views from DUK here that each case should be fought on its merit. 
However, in terms of the greater fight, I’d also like to see DUK taking much less of a resigned, accepting position on this and finding a way to use the membership to demonstrate success in self monitoring. This site is full of spectacular successes which could form the basis for evidence and positive action.

I’m not unfamiliar with what seem like ‘unwinnable’ fights for medication and treatment with NICE. I’ve been involved in the political fight for Ibrutinib, a leukaemia drug denied initially to people like me.  I also accept that they are evidence based but there seems little activity around presently to provide the evidence needed in this particular cause. That’s where campaigning organisations play a pivotal role.

By managing my diabetes successfully at home with very little clinical input, I save the surgery time, the cost of medication, the expense of dealing with complications and hopefully, avoid being a casualty and massive drain on the NHS of being yet another type 2 who was denied the opportunity to play a part in their own care. The present denial of home testing equipment (for those *who want to do it)*, is paternalistic twaddle and NICE are simply hiding behind inadequate and outdated research. Pro-active and preventative measures are needed to stop the immense rising costs of diabetic care. 

Rant over!


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## Lucy Honeychurch (Oct 20, 2017)

Bubbsie said:


> Greymouser...my offer was made to registered forum members...some may need help adapting the letter...moreover since it contains a lot of personal information I do not want it published on the internet... I have decided to supply it on request to members here..without any control over who has access to it...I have no wish to be subjected  the kind of adverse attention type 2s regularly receive from tabloid journalism...trolls... others who may use the opportunity for negative purposes.




I don't blame you, I would feel the same.


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## New-journey (Oct 20, 2017)

Amigo said:


> I applaude Bubbsie’s passion for this issue because I suspect she’s fighting the tide on this. I can appreciate why she wouldn’t want to post her ‘challenge letter’ on here for strategic reasons as MBT has said. Stock letters lose their potency. Her offer is to help members affected on an individual basis and this seems to align with the views from DUK here that each case should be fought on its merit.
> However, in terms of the greater fight, I’d also like to see DUK taking much less of a resigned, accepting position on this and finding a way to use the membership to demonstrate success in self monitoring. This site is full of spectacular successes which could form the basis for evidence and positive action.
> Rant over!


Well said Amigo and agree about stock letters losing their power to bring change. I was part of a national helpline in the past and helped parents write letters to their local LEA, we always supported them to make it personal and relevant to their own situation. During the process of supporting them writing the letter, it also had the effect of empowering the individual parents. I am sure that @Bubbsie is giving loads of support through the private messages so that the the individual is more resourced to take on the challenge.


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## everydayupsanddowns (Oct 20, 2017)

Amigo said:


> By managing my diabetes successfully at home with very little clinical input, I save the surgery time, the cost of medication, the expense of dealing with complications and hopefully, avoid being a casualty and massive drain on the NHS of being yet another type 2 who was denied the opportunity to play a part in their own care. The present denial of home testing equipment (for those *who want to do it)*, is paternalistic twaddle and NICE are simply hiding behind inadequate and outdated research. Pro-active and preventative measures are needed to stop the immense rising costs of diabetic care.



Well said Amigo!


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## Bubbsie (Oct 20, 2017)

AJLang said:


> Bubbsie obviously up to you what you do with your letter but I am confused. Surely the more people that see/use the letter, whether or not they are registered members, then the more diabetics that could benefit from getting testing strips and the more that GPs would recognise the benefits of testing.I thought that was what was wanted?


That is something DUK should be addressing AJ..I have already stated if DUK had a universal approach with their testing strips campaign...none of us need be here discussing this...I believe type 2s in my circumstances are under represented here...we were not included in the testing strips campaign...we have no type 2 moderator...I strongly perceive an imbalance here...perhaps your comments beg the question of why we have to approach this on an individual case by case basis...why those of us non-dependant on hypoglycaemic medication have to work so hard to get recognition on this issue...why aren't DUK doing this on our behalf...that is the question that needs to be asked...I thank you for raising it...all who come here should be treated with respect...given consideration...that includes being listened to...being provided with support when its needed...the excuse that there is no *solid* *reliable* scientific data available...is wearing thin...DUK have the resources...the weight...the know how to get this off the ground.


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## Northerner (Oct 20, 2017)

Bubbsie said:


> I believe type 2s in my circumstances are under represented here...we were not included in the testing strips campaign...we have no type 2 moderator...I strongly perceive an imbalance here.


I'm sorry, I don't accept that. Firstly, most moderators on most health-related forums do not have the health condition that is the subject of the forum. We have over 750,000 posts here, there has always been support for Type 2 self-monitoring, and one of the strengths of this forum is the fact that we are NOT divisive, everyone is here to support everyone else whatever their relationship to diabetes. Many of the problems diabetes can cause are common to all of us. We have about a 50/50 membership of the two major types of diabetes.


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## Bubbsie (Oct 20, 2017)

Amigo said:


> Just a few observations from me, a type 2 diet controlled member who tests as many times as Bubbsie per day (with very good effect in terms of demonstrable diabetic management) and who receives testing strips without question from my GP. I do accept however that I have other serious health conditions which may make the surgery more amenable to me because infection and diabetic control is inextricably linked. This issue applies to many of our members too which is why the fight needs to start individually with the GP surgery and CCG. I’ve read the guidelines and it doesn’t say that testing strips shouldn’t *ever* be provided simply that it shouldn’t be routinely done. So there’s room for manoeuvre.
> 
> I applaude Bubbsie’s passion for this issue because I suspect she’s fighting the tide on this. I can appreciate why she wouldn’t want to post her ‘challenge letter’ on here for strategic reasons as MBT has said. Stock letters lose their potency. Her offer is to help members affected on an individual basis and this seems to align with the views from DUK here that each case should be fought on its merit.
> However, in terms of the greater fight, I’d also like to see DUK taking much less of a resigned, accepting position on this and finding a way to use the membership to demonstrate success in self monitoring. This site is full of spectacular successes which could form the basis for evidence and positive action.
> ...


Amigo...I wouldn't call that a rant by any means...its clearly argued... rational... reasoned...it puts the matter firmly into perspective...covers all the points I have struggled to raise here time & time again...I agree with all you say...hopefully others will take a lead from this thread...and the responses...ask the same questions...raise the same points...I really couldn't have put it better myself...I'm very grateful for such a well considered balanced...no nonsense...forceful argument...Thank you.


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## Bubbsie (Oct 20, 2017)

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.


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## Diabetes UK (Oct 20, 2017)

Vince_UK said:


> I therefore have questions and again forgve my ignorance. What is the status of the campaign and what forward steps have been achieved? How is the campaign structured and managed? What success so far?



I appreciate that this discussion has come to a natural end - but as promised to @Vince_UK I have a response from our Policy Team:

_We’re fighting to make sure everyone with diabetes gets the test strips they need to manage their condition well. We’ve constantly reminded national governments and NHS managers that access to test strips should be based on each person’s need. 

We’ve also raised the issue of test strip restrictions at the All Party Parliamentary Group for Diabetes, which we help support. The group’s report, to be published soon, is likely to outline the issues with restrictions and their impact on people with diabetes. 

Thanks to people with diabetes taking part in our test strips survey we’ve been able show just how many people are affected by restrictions and the effect it has on their lives.

You can also raise local issues of restrictions by taking our local action   __https://www.e-activist.com/ea-action/action?ea.client.id=1967&ea.campaign.id=67094&ea.tracking.id=web_​
As I mentioned before, there is also some information on the Testing Times page of the website which explains where the campaign is. See the ‘Challenging the Restrictions’ part: https://www.diabetes.org.uk/get_involved/campaigning/test-strip-campaigning

Thanks


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## grovesy (Oct 20, 2017)

Hannah DUK said:


> I appreciate that this discussion has come to a natural end - but as promised to @Vince_UK I have a response from our Policy Team:
> 
> _We’re fighting to make sure everyone with diabetes gets the test strips they need to manage their condition well. We’ve constantly reminded national governments and NHS managers that access to test strips should be based on each person’s need.
> 
> ...


I know the MP Keith Vaz  is an advocate for Diabetics issues as I have watched him speak up many times in Parliament.


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## Bubbsie (Oct 20, 2017)

grovesy said:


> I know the MP Keith Vaz  is an advocate for Diabetics issues as I have watched him speak up many times in Parliament.


Thank you grovesy...I wasn't aware of that...useful to know.


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## Bubbsie (Oct 20, 2017)

Lucy Honeychurch said:


> I don't blame you, I would feel the same.


Thank you Lucy...I appreciate that.


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## Bubbsie (Oct 20, 2017)

New-journey said:


> Well said Amigo and agree about stock letters losing their power to bring change. I was part of a national helpline in the past and helped parents write letters to their local LEA, we always supported them to make it personal and relevant to their own situation. During the process of supporting them writing the letter, it also had the effect of empowering the individual parents. I am sure that @Bubbsie is giving loads of support through the private messages so that the the individual is more resourced to take on the challenge.


Thank you NJ...good point...I appreciate that.


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## Bubbsie (Oct 20, 2017)

Vince_UK said:


> Thanks Bubbsie. I just don't see the point of the conflict within a group of people who all, irregardless of state, should share the same goals and be supportive for the common good.
> Diabetes is a chronic and life changing condition and we should all remember that. It has certainly changed my life both in positive and negative ways. I cannot for example, just pop into Burger King or a Pizza place on my way home. I have to think and then settle for a tin of sardines, as I have just done, because the alternative just doesn't bear thinking about.
> Testing and the associated benefits I have already outlined have played a vital role in my understanding of exactly what condition I have and, more importantly, how to manage it.
> I shudder to think what I would have done and where I would be if I had not been able to fund either the meter or the strips.
> It would have been like driving down a German autobahn at 200 miles an hour, blindfolded.


Great analogy Vince...a very accurate description of managing diabetes without the requisite necessities...thank you.


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## Bubbsie (Oct 20, 2017)

Marsbartoastie said:


> Yep...and DUK has the resources to lead from the front and use the mass lobbying power of thousands of members.


Precisely MBT...very succinct.


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## Bubbsie (Oct 20, 2017)

Marsbartoastie said:


> 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.


Yep...spot on MBT.


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## SHORAN (Oct 20, 2017)

Keep up the good work, we need to sort this ridiculous regulation out. Our health and wellbeing is on the line. Available blood strips for regular control makes far more sense economically, it is  obvious that the alternative is very expensive,worrying and serious - health complications accrued. It's Insane. I'll get thinking of how I can put pen to paper regarding the matter.


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## Margaret Wilson (Oct 21, 2017)

Hi Margaret Wilson, new member,  it was interesting to hear of problem with meters. I decided to bypass my nurse  she had always refused.  Doc asked me to give reasons why I should be given one. I argued my case, as you have given above, that I wanted to be in charge and how afraid I was that I did not know what was happening to my body reg. Bgs (may I say I was told that I would have to go on insulin as I was DX after gallstone pancreatitis) I wanted to delay this if I could!!!!! I am not sure if I will eventually need to go on insulin but I wanted the chance to be in control and to know what was happening with my diet. I did find the. Lchf  made a big difference to my bgs something I would not have known!!!  My doc agreed but only gave me the meter and strips because he said I would be going on insulin anyway so therefore I will need to get used to using a meter. Hope this all makes sense,but I feel this issue is very important to all diabetics, even although I am very new to all of this. Thanks for listening.


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## Vince_UK (Oct 21, 2017)

Hannah DUK said:


> I appreciate that this discussion has come to a natural end - but as promised to @Vince_UK I have a response from our Policy Team:
> 
> _We’re fighting to make sure everyone with diabetes gets the test strips they need to manage their condition well. We’ve constantly reminded national governments and NHS managers that access to test strips should be based on each person’s need.
> 
> ...


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.


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## palmoff (Oct 21, 2017)

Vince_UK said:


> 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 thhe risks and had the "not me" philpsophy.
> I also
> 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 purused and lobbied for at the highest level. It has to be the more cost effective alternative.


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.


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## Vince_UK (Oct 21, 2017)

palmoff said:


> 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
> ...


Logical assessment palmoff I think. It really needs bringing out into the open and not pussy footing around a subject which for many is a serious issue.


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## 2Bornot2B (Oct 21, 2017)

I don't understand any of the above conversations, I'm type 2 and I didn't have a problem getting a meter and stripes etc on repeat prescription from the practise nurse at my surgery. The diabetic clinic say they don't advise type 2 testing.  Why don't they? I would have thought it is essential to keep an eye on your reading. My readings range are between 6.5 to 10.3. When it's at its highest I know that I need to take action. Your comments would be  appreciated .


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## Bubbsie (Oct 21, 2017)

SHORAN said:


> Keep up the good work, we need to sort this ridiculous regulation out. Our health and wellbeing is on the line. Available blood strips for regular control makes far more sense economically, it is  obvious that the alternative is very expensive,worrying and serious - health complications accrued. It's Insane. I'll get thinking of how I can put pen to paper regarding the matter.


Thanks Shoran...there is no guarantee it will work...however it may...we do need to address it...than you for your input...it all helps...if this gets the right attention...who knows...others may feel encouraged to join in...that would be great...have a good weekend.


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## Marsbartoastie (Oct 21, 2017)

SHORAN said:


> Keep up the good work, we need to sort this ridiculous regulation out. Our health and wellbeing is on the line. Available blood strips for regular control makes far more sense economically, it is  obvious that the alternative is very expensive,worrying and serious - health complications accrued. It's Insane. I'll get thinking of how I can put pen to paper regarding the matter.


I couldn't agree more.  Very well said.  However, I can't understand why DUK doesn't organise a lobbying campaign on this issue.  It would work like this...

MPs want to keep their jobs so like to quell any unrest in their own constituencies.  DUK could ask all members to write to their MP raising this issue and asking what they plan to do about it.  At the same time they could write a 'letter to the editor' of their local paper whenever a diabetes related story is reported...or tag it on to a story about NHS funding/other cuts etc.  This would raise the issue in a more public arena and is likely to provoke a flurry of responses.  Newspapers like this sort of activity because is has local interest and fills column inches.  MPs hate it because it represents unrest in their constituency and makes them look inept.  Come on DUK...this forum is full of articulate, intelligent individuals who are willing and able to 'have a go'.  Harness that resource and let's tackle this issue head on.


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## Vince_UK (Oct 21, 2017)

Marsbartoastie said:


> I couldn't agree more.  Very well said.  However, I can't understand why DUK doesn't organise a lobbying campaign on this issue.  It would work like this...
> 
> MPs want to keep their jobs so like to quell any unrest in their own constituencies.  DUK could ask all members to write to their MP raising this issue and asking what they plan to do about it.  At the same time they could write a 'letter to the editor' of their local paper whenever a diabetes related story is reported...or tag it on to a story about NHS funding/other cuts etc.  This would raise the issue in a more public arena and is likely to provoke a flurry of responses.  Newspapers like this sort of activity because is has local interest and fills column inches.  MPs hate it because it represents unrest in their constituency and makes them look inept.  Come on DUK...this forum is full of articulate, intelligent individuals who are willing and able to 'have a go'.  Harness that resource and let's tackle this issue head on.


Excellent Mars perhaps we could even start out own lobbying group comprised of members who want to be involved in a practical way.


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## Bubbsie (Oct 21, 2017)

Margaret Wilson said:


> Hi Margaret Wilson, new member,  it was interesting to hear of problem with meters. I decided to bypass my nurse  she had always refused.  Doc asked me to give reasons why I should be given one. I argued my case, as you have given above, that I wanted to be in charge and how afraid I was that I did not know what was happening to my body reg. Bgs (may I say I was told that I would have to go on insulin as I was DX after gallstone pancreatitis) I wanted to delay this if I could!!!!! I am not sure if I will eventually need to go on insulin but I wanted the chance to be in control and to know what was happening with my diet. I did find the. Lchf  made a big difference to my bgs something I would not have known!!!  My doc agreed but only gave me the meter and strips because he said I would be going on insulin anyway so therefore I will need to get used to using a meter. Hope this all makes sense,but I feel this issue is very important to all diabetics, even although I am very new to all of this. Thanks for listening.


Hi Margaret...enjoyed reading this post...well done for arguing your case with your GP...exactly what we all should be doing...obviously we need to take advice on medications from our doctors...but the fatalistic attitude...you will progress to insulin is so disappointing...like many others here I want to avoid that course if I can...it is possible if we achieve good management...can control our diabetes...some may have no choice...but...if we do have an opportunity...a chance to prevent  our conditions from progressing...why on earth shouldn't we be able to aim for that...absolutely right  this is important to all diabetics...Margaret...why not introduce yourself on the 'newbies ' thread...I'm sure you'll receive a warm welcome...there is also a waking numbers thread...very social in the mornings...banter...advice...and more...thank you so much for your valuable input...it makes absolute sense to me...and many of our other members...hope to hear more from you soon...have a good weekend.


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## Bubbsie (Oct 21, 2017)

Marsbartoastie said:


> I couldn't agree more.  Very well said.  However, I can't understand why DUK doesn't organise a lobbying campaign on this issue.  It would work like this...
> 
> MPs want to keep their jobs so like to quell any unrest in their own constituencies.  DUK could ask all members to write to their MP raising this issue and asking what they plan to do about it.  At the same time they could write a 'letter to the editor' of their local paper whenever a diabetes related story is reported...or tag it on to a story about NHS funding/other cuts etc.  This would raise the issue in a more public arena and is likely to provoke a flurry of responses.  Newspapers like this sort of activity because is has local interest and fills column inches.  MPs hate it because it represents unrest in their constituency and makes them look inept.  Come on DUK...this forum is full of articulate, intelligent individuals who are willing and able to 'have a go'.  Harness that resource and let's tackle this issue head on.


WOW MBT...almost spilt my coffee there...right to the point...well argued...common sense...yes DUK...why not?


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## Bubbsie (Oct 21, 2017)

Vince_UK said:


> 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.


Vince...most of us here are singing from the same song sheet...agree unequivocally...this issue needs more attention...more understanding...more inclusion...it seems to me that so much energy...time...resources...money is spent on making excuses for denying what is economic sense...we have said it so many times...we need to be included in the diabetes equation...listened to...have some meaningful as you say 'rigorous' attention...thank you.


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## Marsbartoastie (Oct 21, 2017)

Vince_UK said:


> Excellent Mars perhaps we could even start out own lobbying group comprised of members who want to be involved in a practical way.


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.


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## Vince_UK (Oct 21, 2017)

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.


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## Vince_UK (Oct 21, 2017)

Marsbartoastie said:


> 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.


Yes Mars. That comment more than irritated me to be honest.


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## Vince_UK (Oct 21, 2017)

My Father used to say "If the mountain will not come to you  then you need to go to the mountain". Words that that effect


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## Bubbsie (Oct 21, 2017)

2Bornot2B said:


> I don't understand any of the above conversations, I'm type 2 and I didn't have a problem getting a meter and stripes etc on repeat prescription from the practise nurse at my surgery. The diabetic clinic say they don't advise type 2 testing.  Why don't they? I would have thought it is essential to keep an eye on your reading. My readings range are between 6.5 to 10.3. When it's at its highest I know that I need to take action. Your comments would be  appreciated .


It seems to be a bit of a lottery 2Bornot2B...some more enlightened GPs & nurses prescribe a meter & testing strips...the vast majority do not...simple economics...its the cost of providing the strips...nothing more than that...the economics of this short sighted measure do not make sense...as you say it is essential to keep an eye on our conditions...take action...the only effective way to do that is to test (SMBG)...the Clinical Commissioning Groups that set the budgets for our surgeries direct GPs & nurses not to provide testing strips...often their hands are tied...hence the majority are refused...I was...although my GP was willing to prescribe testing strips...the local CCG were against it...I challenged that...was successful...now I am trying to encourage others to do that...the refusals are arbitrary...no validity to them...if we can manage our diabetes well...avoid complications...keep  ourselves as well as possible ...surely that is beneficial for all...economically...socially...thank you so much for your comments...hoping this matter will receive the attention it deserves finally.


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## Bubbsie (Oct 21, 2017)

Vince_UK said:


> Yes Mars. That comment more than irritated me to be honest.


I don't believe that for one moment Vince


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## Bubbsie (Oct 21, 2017)

Marsbartoastie said:


> 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.


Good to see new members come into this MBT...other members I haven't met before...seems to be a groundswell of opinion gathering...who knows...perhaps this matter will gain some  real impetus as last.


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## Bubbsie (Oct 21, 2017)

Vince_UK said:


> 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.


DUK should take the lead on this Vince...no reason why they can't.


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## Marsbartoastie (Oct 21, 2017)

Vince_UK said:


> Yes Mars. That comment more than irritated me to be honest.


Patronising was the word that sprang to mind.


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## Vince_UK (Oct 21, 2017)

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.


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## Marsbartoastie (Oct 21, 2017)

Vince_UK said:


> 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.


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## Marsbartoastie (Oct 21, 2017)

Vince_UK said:


> 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
> ...


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.


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## Bubbsie (Oct 21, 2017)

Vince_UK said:


> 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
> ...


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?


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## Bubbsie (Oct 21, 2017)

Marsbartoastie said:


> Patronising was the word that sprang to mind.


Dismissive possibly?


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## Bubbsie (Oct 21, 2017)

Marsbartoastie said:


> 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.


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## everydayupsanddowns (Oct 21, 2017)

Vince_UK said:


> 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.


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## Bubbsie (Oct 21, 2017)

Marsbartoastie said:


> 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.


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## Bubbsie (Oct 21, 2017)

palmoff said:


> 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
> ...


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


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## Bubbsie (Oct 21, 2017)

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.


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## everydayupsanddowns (Oct 21, 2017)

Marsbartoastie said:


> 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.


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## everydayupsanddowns (Oct 21, 2017)

Marsbartoastie said:


> 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.


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## Northerner (Oct 21, 2017)

Marsbartoastie said:


> 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


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## Bubbsie (Oct 21, 2017)

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.


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## everydayupsanddowns (Oct 21, 2017)

palmoff said:


> 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
> ...



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.


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## everydayupsanddowns (Oct 21, 2017)

Bubbsie said:


> 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.


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## Vince_UK (Oct 21, 2017)

Northerner said:


> 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.


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## everydayupsanddowns (Oct 21, 2017)

Bubbsie said:


> 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.


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## Vince_UK (Oct 21, 2017)

everydayupsanddowns said:


> 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.
> 
> ...



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.


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## Marsbartoastie (Oct 21, 2017)

Vince_UK said:


> 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.


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## Bubbsie (Oct 21, 2017)

everydayupsanddowns said:


> 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.


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## Bubbsie (Oct 21, 2017)

Marsbartoastie said:


> 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


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## Bubbsie (Oct 21, 2017)

Vince_UK said:


> 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!


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## Kentoldlady (Oct 21, 2017)

everydayupsanddowns said:


> 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.


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## Vince_UK (Oct 21, 2017)

Kentoldlady said:


> 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.
> 
> ...


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


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## SHORAN (Oct 21, 2017)

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


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## Vince_UK (Oct 21, 2017)

SHORAN said:


> 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 !
> 
> ...


Perfect logic SHORAN.


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## mikeyB (Oct 21, 2017)

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 (Oct 21, 2017)

Kentoldlady said:


> 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.
> 
> ...


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 (Oct 21, 2017)

mikeyB said:


> 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 (Oct 21, 2017)

SHORAN said:


> 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 !
> 
> ...


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


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## everydayupsanddowns (Oct 21, 2017)

mikeyB said:


> 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!


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## Bubbsie (Oct 21, 2017)

everydayupsanddowns said:


> 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.


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## Bubbsie (Oct 21, 2017)

everydayupsanddowns said:


> 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?


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## everydayupsanddowns (Oct 21, 2017)

Bubbsie said:


> 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 (Oct 21, 2017)

everydayupsanddowns said:


> 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 (Oct 21, 2017)

Bubbsie said:


> 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.


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## everydayupsanddowns (Oct 21, 2017)

Vince_UK said:


> 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 (Oct 21, 2017)

everydayupsanddowns said:


> 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’?
> 
> ...



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.


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## everydayupsanddowns (Oct 21, 2017)

Kentoldlady said:


> 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.


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## Bubbsie (Oct 21, 2017)

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.


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## Vince_UK (Oct 21, 2017)

Kentoldlady said:


> 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.
> ...


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.


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## palmoff (Oct 21, 2017)

everydayupsanddowns said:


> 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.
> 
> ...



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.


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## everydayupsanddowns (Oct 21, 2017)

palmoff said:


> 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.


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## Marsbartoastie (Oct 21, 2017)

Kentoldlady said:


> 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.
> ...


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.


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## palmoff (Oct 21, 2017)

everydayupsanddowns said:


> 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.


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## Bubbsie (Oct 21, 2017)

everydayupsanddowns said:


> 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.


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## everydayupsanddowns (Oct 21, 2017)

Bubbsie said:


> 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.


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## Bubbsie (Oct 21, 2017)

everydayupsanddowns said:


> 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.


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## Northerner (Oct 21, 2017)

Bubbsie said:


> 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.


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## everydayupsanddowns (Oct 21, 2017)

Bubbsie said:


> 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.


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## Bubbsie (Oct 21, 2017)

Northerner said:


> 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.


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## Vince_UK (Oct 21, 2017)

Bubbsie said:


> 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.


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## Ralph-YK (Oct 22, 2017)

SHORAN said:


> 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]


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## Ralph-YK (Oct 22, 2017)

Bubbsie said:


> 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?


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## Ralph-YK (Oct 22, 2017)

Bubbsie said:


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





Vince_UK said:


> 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?


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## Vince_UK (Oct 22, 2017)

Ralph-YK said:


> 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


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## Ralph-YK (Oct 22, 2017)

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.


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## Bubbsie (Oct 22, 2017)

[



Vince_UK said:


> 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.


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## Bubbsie (Oct 22, 2017)

Ralph-YK said:


> 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


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## khskel (Oct 22, 2017)

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


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## Bubbsie (Oct 22, 2017)

khskel said:


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


Agree khskel...an obvious benefit...economically...socially...in every way.


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## Marsbartoastie (Oct 22, 2017)

khskel said:


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


Excellent point khskel.  Insurance companies employ the keenest analysis when it comes to economics...scrutinising every last penny (or cent).  My last private medical health bill itemised everything...down to the cost of a single sticking plaster used after I'd had blood drawn.


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## grovesy (Oct 22, 2017)

khskel said:


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


I am not sure that is the case i have read many posts elsewhere from US  posters and there insurers dictate what equipment they fund and where/who they can obtain their supplies from.


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## Bubbsie (Oct 22, 2017)

grovesy said:


> I am not sure that is the case i have read many posts elsewhere from US  posters and there insurers dictate what equipment they fund and where/who they can obtain their supplies from.


grovesy I don't know much about the private health care in the US...so can't comment...however...I have no objection to whichever meter is supplied to me...I know others have not been happy with theirs...we all have our preference...but the point is we should have the opportunity to test if we want to...I would say we all need to...but...others may not feel the same compulsion...may not want to...the opportunity should be given...its either taken...or not...for me...ultimately that is germane to this matter...we do all pay for our health care...those in work...those out of work...pensioners....on the food we buy...the clothes we buy...our income tax...customs duty...tobacco duty (not a great example I know)...petrol duty...we are all taxed at those sources...some buy extra  private health care...no objection to that...the point is none of us get it free.


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## Marsbartoastie (Oct 22, 2017)

grovesy said:


> I am not sure that is the case i have read many posts elsewhere from US  posters and there insurers dictate what equipment they fund and where/who they can obtain their supplies from.


I would imagine that's because particular manufacturers/suppliers have negotiated deals with the insurance companies for exclusive rights to this lucrative market share.  After all...business is business.


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## everydayupsanddowns (Oct 22, 2017)

Marsbartoastie said:


> Excellent point khskel.  Insurance companies employ the keenest analysis when it comes to economics...scrutinising every last penny (or cent).  My last private medical health bill itemised everything...down to the cost of a single sticking plaster used after I'd had blood drawn.





grovesy said:


> I am not sure that is the case i have read many posts elsewhere from US  posters and there insurers dictate what equipment they fund and where/who they can obtain their supplies from.



This really caught my attention, because if all T2s are offered an unlimited supply of strips on D&E in the US, then that must surely be the result of solid research evidence, which could then be used by DUK to put pressure on those holding the purse strings in the UK. 

Not had much chance to look into it, but unfortunately as @grovesy says, it doesn’t seem to be quite so straightforward. 

This from a US type 2 forum:

Check costs and allowable quantities through multiple methods. Some insurance plans will give you (relatively) unlimited quantities for a one-month co-pay -- whatever your doctor prescribes. (Some plans cover all or part of this with no out-of-pocket costs at all.) Other plans will limit the quantities your doctor may prescribe (1 test/day for non-insulin-dependent, 3-4 tests/day for insulin-dependent, no allowance for control tests). Depending on your plan, you may be able to pick this up at the local pharmacy or you may need to order through their pharmacy benefits fulfillment plan (e.g. Medco or ExpressScripts).​
So it looks like there *might* be some
provision for some (depending on plan) and those on D&E seem likely to receive far less - not really sure what use 1x a day would be. There also seem to be a lot of people caught up with co-pay, and many more simply self-funding as their insurance will not cover, or they have no insurance. 

A bit frustrating really.


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## Marsbartoastie (Oct 22, 2017)

everydayupsanddowns said:


> This really caught my attention, because if all T2s are offered an unlimited supply of strips on D&E in the US, then that must surely be the result of solid research evidence, which could then be used by DUK to put pressure on those holding the purse strings in the UK.
> 
> Not had much chance to look into it, but unfortunately as @grovesy says, it doesn’t seem to be quite so straightforward.
> 
> ...


Once again this begs the question...why isn't DUK looking at this sort of information from around the world?  I understand that DUK policy on research is to examine proposals and then react.  However, what we need is a pro-active approach to this issue.


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## Bubbsie (Oct 22, 2017)

Marsbartoastie said:


> Once again this begs the question...why isn't DUK looking at this sort of information from around the world?  I understand that DUK policy on research is to examine proposals and then react.  However, what we need is a pro-active approach to this issue.


Yes...yes...yes MBT.


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## Bubbsie (Oct 22, 2017)

The US comparison is not relevant to our issues here...we are not in the US market...we are not debating private health care...or health insurance...we are patients in the NHS...we all pay for our care  up front...in advance whether we use it or not...we are asking for solid...methodical...clinical studies here in the UK...support from DUK...this is what we should be concentrating on...even an undertaking this issue will be discussed in full...members will be listened to ...consulted...would be a start...we should not  'cloud' the issue with comparisons from the USA or elsewhere...what is frustrating are the constant excuses we receive...the ever repeated explanation 'there no solid methodical clinical research to prove a benefit'...perhaps we ought to concentrate our efforts to ensuring the absence of proven clinical data is addressed...just wondering if the 'dissatisfaction' demonstrated in the responses from members here will be brought to the attention of those at DUK who take can this matter forward...give us some reassurance*.*


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## Marsbartoastie (Oct 22, 2017)

Bubbsie said:


> The US comparison is not relevant to our issues here...we are not in the US market...we are not debating private health care...or health insurance...we are patients in the NHS...we all pay for our care  up front...in advance whether we use it or not...we are asking for solid...methodical...clinical studies here in the UK...support from DUK...this is what we should be concentrating on...even an undertaking this issue will be discussed in full...members will be listened to ...consulted...would be a start...we should not  'cloud' the issue with comparisons from the USA or elsewhere...what is frustrating are the constant excuses we receive...the ever repeated explanation 'there no solid methodical clinical research to prove a benefit'...perhaps we ought to concentrate our efforts to ensuring the absence of proven clinical data is addressed...just wondering if the 'dissatisfaction' demonstrated in the responses from members here will be brought to the attention of those at DUK who take can this matter forward...give us some reassurance*.*



Anything that helps the cause is useful Bubbsie.  What's particularly good about this thread, however, is the fact that it gives members an opportunity to express their views, share their experience and make proposals that push things forward.  Long may that continue.


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## Robin (Oct 22, 2017)

But @Bubbsie, I thought the only reason we were looking to the US was to see if they had some evidence that they based their decision to fund test strips, which we could then use in a campaign.


everydayupsanddowns said:


> This really caught my attention, because if all T2s are offered an unlimited supply of strips on D&E in the US, then that must surely be the result of solid research evidence, which could then be used by DUK to put pressure on those holding the purse strings in the UK.


You have said that research is needed in the UK, and this may be the case, but why not look at research from other countries, either from the US or, as marsbartoastie suggests, worldwide, to find some, before we start reinventing the wheel?


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## Amigo (Oct 22, 2017)

Bubbsie said:


> The US comparison is not relevant to our issues here...we are not in the US market...we are not debating private health care...or health insurance...we are patients in the NHS...we all pay for our care  up front...in advance whether we use it or not...we are asking for solid...methodical...clinical studies here in the UK...support from DUK...this is what we should be concentrating on...even an undertaking this issue will be discussed in full...members will be listened to ...consulted...would be a start...we should not  'cloud' the issue with comparisons from the USA or elsewhere...what is frustrating are the constant excuses we receive...the ever repeated explanation 'there no solid methodical clinical research to prove a benefit'...perhaps we ought to concentrate our efforts to ensuring the absence of proven clinical data is addressed...just wondering if the 'dissatisfaction' demonstrated in the responses from members here will be brought to the attention of those at DUK who take can this matter forward...give us some reassurance*.*



I agree that a socialised health care system like the U.K. is very different to the private, commercialised system in the US but I can see why how they deal with diabetic testing is relevant and could provide a template for good preventative care here. Its clear that there must be an acceptance and hopefully financially calculated risk analysis for testing to be routinely provided as a matter of good practice. It’s what we lack here...the means to demonstrate the long term cost implications of preventing people from home testing. 

I think using the example of American health care practice is simply to present an affirmative message that the usefulness of testing has been established in another developed country with a diabeties problem.


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## Bubbsie (Oct 22, 2017)

I think using the example of American health care practice is simply to present an affirmative message that the usefulness of testing has been established in another developed country with a diabeties problem.[/QUOTE]


Amigo said:


> Its clear that there must be an acceptance and hopefully financially calculated risk analysis for testing to be routinely provided as a matter of good practice. It’s what we lack here...the means to demonstrate the long term cost implications of preventing people from home testing.





Robin said:


> You have said that research is needed in the UK, and this may be the case, but why not look at research from other countries, either from the US or, as marsbartoastie suggests, worldwide, to find some, before we start reinventing the wheel?



Not sure I would agree it's going as far as  reinventing the wheel @Robin ...that made me laugh...but...we each have  our opinions...and the discussion on this thread has been productive...encouraging...believe you... @Amigo & @Marsbartoastie  do have a perfectly valid . ..well reasoned point there...I'm presuming the American health care system would have some of the best accountants in the world ...the best cost analysis systems there could be.. on that basis...yes I would agree on those points...perhaps that is what we are lacking here in the UK...a detailed methodical cost analysis on this matter.


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## Marsbartoastie (Oct 22, 2017)

Amigo said:


> I agree that a socialised health care system like the U.K. is very different to the private, commercialised system in the US but I can see why how they deal with diabetic testing is relevant and could provide a template for good preventative care here. Its clear that there must be an acceptance and hopefully financially calculated risk analysis for testing to be routinely provided as a matter of good practice. It’s what we lack here...the means to demonstrate the long term cost implications of preventing people from home testing.
> 
> I think using the example of American health care practice is simply to present an affirmative message that the usefulness of testing has been established in another developed country with a diabeties problem.


As ever, a very clear, well expressed argument Amigo.  Onward and upward


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## Northerner (Oct 22, 2017)

Bubbsie said:


> perhaps that is what we are lacking here in the UK...a detailed methodical cost analysis on this matter.


That's precisely what NICE conduct in order to arrive at their guidelines.


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## Marsbartoastie (Oct 22, 2017)

Northerner said:


> That's precisely what NICE conduct in order to arrive at their guidelines.


It's strange, then, that NICE seems to have reached the opposite conclusion to the bean-counters in the USA.


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## Bubbsie (Oct 22, 2017)

Marsbartoastie said:


> As ever, a very clear, well expressed argument Amigo.  Onward and upward





Marsbartoastie said:


> It's strange, then, that NICE seems to have reached the opposite conclusion to the bean-counters in the USA.


I should have added an analysis based on proven financial  accounting...thank you for reminding me MBT.


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## Northerner (Oct 22, 2017)

Bubbsie said:


> I should have added an analysis based on proven financial  accounting...thank you for reminding me MBT.


But why wouldn't it be? I don't understand what you are saying, that's the whole purpose of NICE, as was explained earlier in the thread. You may not agree with their conclusions, of course.


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## Marsbartoastie (Oct 22, 2017)

Northerner said:


> But why wouldn't it be? I don't understand what you are saying, that's the whole purpose of NICE, as was explained earlier in the thread. You may not agree with their conclusions, of course.


I've been involved in enough 'analysis exercises' to know that you can easily control the outcome by being selective about the factors taken into consideration. 

While anecdotal evidence is difficult to factor into NICE style exercises, it has great value in terms of changing perceptions.  A body of evidence based on facts and figures from T2s who have used testing to successfully manage their BG would be a boon in the fight to change perceptions at insitutional, professional and personal levels.  Many members would happily contribute to such an exercise and it wouldn't require a huge investment from DUK...simply a willingness to prioritise this issue.


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## Bubbsie (Oct 22, 2017)

Marsbartoastie said:


> I've been involved in enough 'analysis exercises' to know that you can easily control the outcome by being selective about the factors taken into consideration


MBT...thank you for your input once again...believe those that have contributed have made their points clear...now we're onto another issue...Statistics...what to make of them...no wish to be trite...offer the usual clichéd response...hackneyed comments...so I won't ... just have a peep at Mark Twain's  book...Chapters from my Autobiography...his perspective on statistics...where he quotes/says ' figures often beguile me ...: there are three kinds of lies...lies... damned lies...and statistics'...many believe he is the originator  of this phrase...more likely attributable to Benjamin Disraeli...however...the debate on that continues.[/QUOTE]


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## mikeyB (Oct 22, 2017)

I’ve been having a look around the world, not just in America, but also France, Germany, Canada, New Zealand and Australia. None recommend blood monitoring of glucose in T2s not on medication that could cause hypoglycaemia. They use studies that show no improvement in HbA1c in those testing to those simply monitored with 3-6 monthly HbA1c and given advice on weight and diet in both cases. It is studies of that sort that informs the NICE position. These are reputable studies, so not easy to argue against.

The population of this forum is self selected, not a true reflection of the total population with diabetes. I’m not sure, with all our experiences on this forum, that we have sufficient clout to argue against the bean counters en masse. Their evidence is strong. Our evidence is nothing more than anecdotal, from the small group of the total membership who are vocal on the forum.

NICE would cheerfully admit our results are better than average, if we could show that, but they can’t accept evidence from a self selected group with a ready formed opinion to affect their judgement. 

And I say all that as a supporter of blood testing for all T2s.


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## Ralph-YK (Oct 22, 2017)

mikeyB said:


> They use studies that show no improvement in HbA1c in those testing to those simply monitored with 3-6 monthly HbA1c and given advice on weight and diet in both cases.


We're not given the information on diet either.  We'd need to compare testers with people left to flounder like we are in England.  The design of the study is important.  Who and what are you actually testinng.

Though, yes, those studies don't help our case.


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## palmoff (Oct 22, 2017)

The problem with selected group studies is just that, they are selected. Even if you selected 50% of type 2's for testing the results could still differ from blanket type 2's self testing trial.


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## mikeyB (Oct 22, 2017)

The key point I was making on that aspect was _self_ selected groups.


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## Bubbsie (Oct 22, 2017)

I've just read this article published last year...perhaps that explains the position in Europe...and the results of the 'reputable studies'.

Despite the availability of robust evidence demonstrating that lowering glycaemic levels reduces the risks of diabetes-related complications, there has been little improvement in recent years in glycaemic control among individuals with diabetes in Europe and the US. Although widely used, there has been considerable controversy surrounding the role of self-monitoring of blood glucose (SMBG) as a means of achieving glycaemic control. This has resulted in a re-consideration of the prescription of blood glucose strips especially in the current climate of health care cost-containment. Existing clinical recommendations lack specific guidance to patients and health professionals regarding SMBG practice intensity and frequency, particularly for those not treated with insulin. Previous studies of the association between SMBG and glycaemic control found often weak, and sometimes conflicting, evidence. More rigorous longitudinal studies are needed to examine the role of SMBG with special attention to the unique needs of patients using different diabetes treatments, within special clinical sub-populations, and during initiation of SMBG versus its ongoing use. Further understanding of the intensity and frequency of SMBG are also needed to capture variability in glycaemic patterns in order to facilitate more specific guideline development.

I am not aware I or anyone else who responded to this thread... asked or expected any study to be limited to a small self selected group from this forum.


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## everydayupsanddowns (Oct 22, 2017)

i think what Forum experience shows is that there is a significant population of motivated people diagnosed with type 2, on non-hypoglycaemic meds that (with support and education in using results to inform an individualised diet) can significantly reduce HbA1c and maintain that reduction. 

To my mind, this is an easier more strategic option for DUK (and/or forum pressure) than attempting to overturn current NICE guidance. There would need to be quite a shift in evidence (multiple studies) to change the balance of evidence. But the current studies do accept there are those for whom SMBG works. 

This seems to be the more immediate line of approach in terms of DUK applying pressure for test strips for T2 on D&E to me. 

I stress it is not meant to offend. I am merely trying to help and offer ideas.


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## Northerner (Oct 22, 2017)

Bubbsie said:


> I am not aware I or anyone else who responded to this thread... asked or expected any study to be limited to a small self selected group from this forum.


That wasn't what @mikeyB was saying, he said that we ARE a self-selected group, which we are.


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## Bubbsie (Oct 22, 2017)

sure @mikeyB can & will explain that himself if he chooses...moreover it would be great to hear anything from DUK directly...particularly how they feel they should/could/would respond to this issue...or would that just be too much to hope for?...coincidentally one of the doctors involved in the report is from my old Alma Mater...South Bank ...be great to explore his views on this the next time I'm in London.


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## mikeyB (Oct 22, 2017)

Actually Bubbsie I was going to make exactly the same point as Northerner, until I read his post. I thought repeating it unnecessary.


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## everydayupsanddowns (Oct 22, 2017)

Bubbsie said:


> moreover it would be great to hear anything from DUK directly...particularly how they feel they should/could/would respond to this issue...or would that just be too much to hope for?



I am sure DUK staff who are members of the forum will be keen to comment on the additional posts on this thread after it had gone quiet late on Friday.  Most likely once the office opens on Monday, or whenever they are next in and/or allotted forum time. The DUK staff who are members of the forum also have many other responsibilities, as I’m sure you can appreciate.


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## Marsbartoastie (Oct 22, 2017)

When I was diagnosed T2 I was prescribed Metformin and told to lose weight by following NHS dietary advice...which is carb heavy.  I was also told that T2 diabetes was a progressive condition and that in time I was likely to require more robust medication.  This was only a couple of years ago.  I have used a combination of education and testing to bring my diabetes under control.

As a result of the new work being done around the world the NHS will inevitably change its approach to diabetes.  However, institutions/professionals are resistant to change and in the meantime T2 diabetics are being badly served.  The very least they should expect is the opportunity to take control of their own health.  Nothing worth having has ever been achieved without a fight.  We need to raise the profile of this issue until it cannot be ignored.  Instead of throwing up obstacles and objections, DUK should draw up a strategy to get it firmly on the agenda and a thorn in the side of every MP and NHS Trust.


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## mikeyB (Oct 22, 2017)

I wouldn’t disagree with that Marsbar.  I don’t know how they expect people like you and Bubbsie to maintain valiant efforts to save money on medication without testing, or T2s saving money on complications.

In Germany, when this policy was announced in 2013 there was a right stramash from Professors, Medical Academics and researchers, and plain old GPs. Made no difference, though. 

Protest in this country is hobbled by GPs complying without a word of protest with this edict, and attempting to justify it to patients. When I was a GP there wasn’t a problem prescribing BG testing kit to Type 2s. It’s about money, not clinical care.


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## Bubbsie (Oct 22, 2017)

Marsbartoastie said:


> When I was diagnosed T2 I was prescribed Metformin and told to lose weight by following NHS dietary advice...which is carb heavy.  I was also told that T2 diabetes was a progressive condition and that in time I was likely to require more robust medication.  This was only a couple of years ago.  I have used a combination of education and testing to bring my diabetes under control.
> 
> As a result of the new work being done around the world the NHS will inevitably change its approach to diabetes.  However, institutions/professionals are resistant to change and in the meantime T2 diabetics are being badly served.  The very least they should expect is the opportunity to take control of their own health.  Nothing worth having has ever been achieved without a fight.  We need to raise the profile of this issue until it cannot be ignored.  Instead of throwing up obstacles and objections, DUK should draw up a strategy to get it firmly on the agenda and a thorn in the side of every MP and NHS Trust.


My diagnosis was exactly the same MBT...given medication...the fatalistic advice...no positive outlook for me...three months later told despite reducing my BG from 17.4 to 8.2...had to up the medication to the maximum dose...said I would eventually be at that point anyway... then likely insulin....I resisted that...continued on diet/exercise...education... testing...now I have reduced my medication to the lowest dose...hoping to rely on diet & exercise only as you do after my next review...agree with all you say above...would definitely second that.


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## Ralph-YK (Oct 22, 2017)

Marsbartoastie, Bubbsie; you both got more than I did.


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## Vince_UK (Oct 23, 2017)

Marsbartoastie said:


> When I was diagnosed T2 I was prescribed Metformin and told to lose weight by following NHS dietary advice...which is carb heavy.  I was also told that T2 diabetes was a progressive condition and that in time I was likely to require more robust medication.  This was only a couple of years ago.  I have used a combination of education and testing to bring my diabetes under control.
> 
> As a result of the new work being done around the world the NHS will inevitably change its approach to diabetes.  However, institutions/professionals are resistant to change and in the meantime T2 diabetics are being badly served.  The very least they should expect is the opportunity to take control of their own health.  Nothing worth having has ever been achieved without a fight.  We need to raise the profile of this issue until it cannot be ignored.  Instead of throwing up obstacles and objections, DUK should draw up a strategy to get it firmly on the agenda and a thorn in the side of every MP and NHS Trust.


Same here MBT and my diagnosis was only in Sept this year, 28th to be exact.  Totally the same experience.
No mention at all of testing, no guidance, no advice.  T2 is a chronic progressive condition bla bla bla. Dont eat rice amd mashed potatoes, loose weight.
You leave the the GP's surgery feeling absolutely depressed and resign yourself to being seriously ill and that there is no escape from. I have come to see that this is absolutely untrue from many angles.
Tell people you are T2 and it just doesn't register with them what in fact you have.
Told my Son, reaction, "Ah Ok you will have to stop eating sweets".
Testing and this forum and the people here have shown me a new road map from everthing to eating and testing.
By utilising testing, without any help in how to monitor my levels or actually test by the way other than members on this forum, I have managed to bring my BG levels under control and stablise them.
I have already stated the same as MBT that we need a cohesive strategy involving members and DUK to take the bull by the horns, so as to speak, and profiile publically this issue. I can self fund but that doesn't stop me from being empathetic with my fellows here who find that very difficult. Diabetes in not selective with reference to socio economic groups, it can affect anyone irregardless of where you sit in society.
There must be many who don't have access to forums like this and perhaps even don't know of the existence of this type of communication platform that is a mine of knowledge. Many who don't have or cannot use the internet. How isolated they must feel.
This whole issue and the responses I have seen on this thread raises a questions for me and again his is largely down to my ignorance.
How and who by is DUK funded?
What about accoutablity for their actions?
We should not let this issue fade away and we should keep this thread well and truly alive.


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## Bubbsie (Oct 23, 2017)

Ralph-YK said:


> Marsbartoastie, Bubbsie; you both got more than I did.


Ralph...I'm sorry to hear that...I'm assuming you mean 'more' in terms of advice...testing strips...education?...that's the whole reason I tried to raise this issue...many are neglected in terms of the right advice...the appropriate medication...support...initially got I little of that...practically nothing...I did attend a course for half a day...it was hopeless...so I 'educated' myself...I read...researched...joined the forum...self funded strips for almost a year...then on a point of principle decided to challenge my GP & the CCG on that...successful...wanted to encourage others to do likewise...it was hard work...not easy...but it was worth it...we should all have the right level of support...access to what we need to manage our diabetes...I am hoping that attitude will change...I would be prepared to support any movement which brings about a more consistent approach to diabetes from diagnosis onwards...the right education...the right dietary advice...testing strips...anything I got was hard won Ralph...that's not a complaint...not a  criticism...that's just how it was...I understand not everyone is able to do that...that's why we need to have these discussions...this thread has been discussed to the full...gained a lot of attention...all of it useful...lets hope it can encourage more to get what they need to manage their diabetes.


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## Mark Parrott (Oct 23, 2017)

My experience was good with my DSN who gets very frustrated with NICE guidelines.  She has been trying to promote testing for all type 2's for years.  But she has never seen anyone 'resolve' (her words) their diabetes like I have, whether they had meters or not.  I believe this is down to not being told how to use a meter to your advantage.  Whenever I see a GP at my surgery, they have no idea how I managed to lower my HbA1c.  Even the specialist diabetes GP was shocked.  My brother was prescribed a meter when just on Metformin.  He stopped using it because he didn't like seeing high blood sugar levels rather than change his diet.  He was given bad dietary advice.  Told to eat more fruit, told breakfast cereals are fine for Type 2's & eat plenty of starchy carbs.  Even though he has seen my results with my diet, he won't change because he believes the diet his GP told him to follow is correct & my diet will kill me.  The education needs to change.  Amazingly, he has not yet progressed to insulin, though he is on full tablet meds,  In fact his last HbA1c was only 42, which is probably alcohol related as he is a big whiskey drinker.  When I did get him to test, he was often over 12 after food, but later would swing the other way & be down in the 3's.  This would explain his lower HbA1c, which takes the average.  Not a healthy way to live.


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## Mark Parrott (Oct 23, 2017)

Something else I must add.  When people with Type 2 are told 'it is a progressive condition & it doesn't matter what you do, you will end up on insulin' are they going to do anything to control it themselves?  Most people won't bother.  They won't see the point.  Information like this is dangerous and by reading the newbies thread on here shows that this happens a lot.


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## everydayupsanddowns (Oct 23, 2017)

Mark Parrott said:


> Something else I must add.  When people with Type 2 are told 'it is a progressive condition & it doesn't matter what you do, you will end up on insulin' are they going to do anything to control it themselves?  Most people won't bother.  They won't see the point.  Information like this is dangerous and by reading the newbies thread on here shows that this happens a lot.



Completely agree Mark. We know people on the forum who have been successfully managing their diabetes without meds for 10 years. That’s not to say that people who need the support of medication, or insulin have failed in any way - more that it is a lot more complex and varied than ‘inevitably progressive’.

These doom laden proclamations are entirely unhelpful. As are conversations which trivialise the condition IMO, ‘a bit of diabetes, not to worry take these tablets and try not to have so many sweet things...’.

Slightly off-topic, but I don’t want to split the thread as we have kept the conversation intact after it began with Bubbsie’s initial offer of private support.


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## Bubbsie (Oct 23, 2017)

Mark Parrott said:


> My experience was good with my DSN who gets very frustrated with NICE guidelines.  She has been trying to promote testing for all type 2's for years.  But she has never seen anyone 'resolve' (her words) their diabetes like I have, whether they had meters or not.  I believe this is down to not being told how to use a meter to your advantage.  Whenever I see a GP at my surgery, they have no idea how I managed to lower my HbA1c.  Even the specialist diabetes GP was shocked.  My brother was prescribed a meter when just on Metformin.  He stopped using it because he didn't like seeing high blood sugar levels rather than change his diet.  He was given bad dietary advice.  Told to eat more fruit, told breakfast cereals are fine for Type 2's & eat plenty of starchy carbs.  Even though he has seen my results with my diet, he won't change because he believes the diet his GP told him to follow is correct & my diet will kill me.  The education needs to change.  Amazingly, he has not yet progressed to insulin, though he is on full tablet meds,  In fact his last HbA1c was only 42, which is probably alcohol related as he is a big whiskey drinker.  When I did get him to test, he was often over 12 after food, but later would swing the other way & be down in the 3's.  This would explain his lower HbA1c, which takes the average.  Not a healthy way to live.


Mark fascinating read...have a friend in very similar circumstances to your brother...diagnosed...given little advice...Metformin to start...the dosage increased regularly due to ever increasing blood sugars...several years later on insulin...was provided with a meter then...did test...but had no idea how to interpret the results...when I asked her why she hadn't addressed the increase in meds...she said she accepted what her DSN told her...when we discussed it...she no idea what an HbA1c test was...we discuss it often now...making a little headway with her...agree with you...education is vital...  for testing...how to interpret the results of testing...changing our diet...lifestyle...some firm encouragement to believe we can improve our management...stop the fatalistic attitude...our diabetes does not have to progress...we can manage it with the right guidance & support.


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## Bubbsie (Oct 23, 2017)

Mark Parrott said:


> Something else I must add.  When people with Type 2 are told 'it is a progressive condition & it doesn't matter what you do, you will end up on insulin' are they going to do anything to control it themselves?  Most people won't bother.  They won't see the point.  Information like this is dangerous and by reading the newbies thread on here shows that this happens a lot.


Yep it does...told the same...my GP said 'you'll be on it eventually...might as well accept that'...that's what I refer to as the fatalistic attitude...well said.


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## Bubbsie (Oct 23, 2017)

everydayupsanddowns said:


> Completely agree Mark. We know people on the forum who have been successfully managing their diabetes without meds for 10 years. That’s not to say that people who need the support of medication, or insulin have failed in any way - more that it is a lot more complex and varied than ‘inevitably progressive’.
> 
> These doom laden proclamations are entirely unhelpful. As are conversations which trivialise the condition IMO, ‘a bit of diabetes, not to worry take these tablets and try not to have so many sweet things...’.
> 
> Slightly off-topic, but I don’t want to split the thread as we have kept the conversation intact after it began with Bubbsie’s initial offer of private support.


There are many more managing their diabetes that are not on the forum...many more managing their diabetes on other forums...I don't see any diversion here...the testing issue is directly linked to good management...the lack of provision directly relevant to this issue...yes...I began with an offer of private support...in the absence of any other support...members expanded on that...I welcome that...its all directly linked...whilst the core matter can be viewed as the supply of testing strips...that cannot...should not be isolated...its about managing our diabetes...testing...advice...support...they all are all related.


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## everydayupsanddowns (Oct 23, 2017)

Bubbsie said:


> There are many more managing their diabetes that are not on the forum...many more managing their diabetes on other forums...I don't see any diversion here...the testing issue is directly linked to good management...the lack of provision directly relevant to this issue...yes...I began with an offer of private support...in the absence of any other support...members expanded on that...I welcome that...its all directly linked...whilst the core matter can be viewed as the supply of testing strips...that cannot...should not be isolated...its about managing our diabetes...testing...advice...support...they all are all related.



The post was initially about your offer of private support to people trying to get test strips. It then shifted to DUK’s campaigns and their effectiveness or otherwise and what more the might do. Mark’s post and my reply was more about information given by HCPs to newly Dx. That was all I meant.


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## Mark Parrott (Oct 23, 2017)

everydayupsanddowns said:


> Completely agree Mark. We know people on the forum who have been successfully managing their diabetes without meds for 10 years. That’s not to say that people who need the support of medication, or insulin have failed in any way - more that it is a lot more complex and varied than ‘inevitably progressive’.
> 
> These doom laden proclamations are entirely unhelpful. As are conversations which trivialise the condition IMO, ‘a bit of diabetes, not to worry take these tablets and try not to have so many sweet things...’.
> 
> Slightly off-topic, but I don’t want to split the thread as we have kept the conversation intact after it began with Bubbsie’s initial offer of private support.


Yes, should've stated that meds & insulin are not a failure.  Some need them regardless & may progress to more meds regardless of what they have done to prevent it.


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## Bubbsie (Oct 23, 2017)

everydayupsanddowns said:


> The post was initially about your offer of private support to people trying to get test strips. It then shifted to DUK’s campaigns and their effectiveness or otherwise and what more the might do. Mark’s post and my reply was more about information given by HCPs to newly Dx. That was all I meant.


Mike...actually it was  your initial intervention that opened up the whole thread...it seemed to gather momentum after that...developed naturally...for that I am grateful...it was positive...diverse opinions...whether for or against the argument...the strength of opinions...all the issues linked to the that one focal point...for me it was all positive...new members joined in...members I had no connection with contributed...some who have been here for some time ...who's presence I had been unaware of...all of that has to be applauded...appreciated...encouraged.


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## Vince_UK (Oct 23, 2017)

Mark Parrott said:


> Something else I must add.  When people with Type 2 are told 'it is a progressive condition & it doesn't matter what you do, you will end up on insulin' are they going to do anything to control it themselves?  Most people won't bother.  They won't see the point.  Information like this is dangerous and by reading the newbies thread on here shows that this happens a lot.


That again is exactly what I was told. The nurse sat in front of me , bla  rice, bla, mashed potatoes, bla sweets , bla bla bla. then the shattering statement "Diabetes is a chroninc progressive condition".
What a bombshell. Just give up Vince? Like a death sentence to be honest.
To be honest I wouldn't have bothered because without this forum I wouldn't have a clue how to be bothered.
No Way This forum changed my view 180 degrees and testing allows me to monitor and take steps  to ensure it isn't a "progressve condition" and guys like Mark are proving it can be halted through hard work, determination and testing.


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## Bubbsie (Oct 23, 2017)

Vince_UK said:


> That again is exactly what I was told. The nurse sat in front of me , bla  rice, bla, mashed potatoes, bla sweets , bla bla bla. then the shattering statement "Diabetes is a chroninc progressive condition".
> What a bombshell. Just give up Vince? Like a death sentence to be honest.
> To be honest I wouldn't have bothered because without this forum I wouldn't have a clue how to be bothered.
> No Way This forum changed my view 180 degrees and testing allows me to monitor and take steps  to ensure it isn't a "progressve condition" and guys like Mark are proving it can be halted through hard work, determination and testing.


Hoi Vince...you cheeky so and so...what about the girls...the rest of us...well....I'm waiting.


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## Vince_UK (Oct 23, 2017)

Bubbsie said:


> Hoi Vince...you cheeky so and so...what about the girls...the rest of us...well....I'm waiting.


My sincerest and humble apologies Bubbsie. "Let's not forget the "girls" contribution also".


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## Bubbsie (Oct 23, 2017)

Vince_UK said:


> My sincerest and humble apologies Bubbsie. "Let's not forget the "girls" contribution also".


...well that lightened this thread slightly Vince...thank you...apology accepted.


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## Vince_UK (Oct 23, 2017)

I have just remembered. When I came to China in October and told my Chinese colleques and friends I was Diabetic so they wouldn't get offended if I refused certain foods, 3 of them asked me "How many times each day have you got to check your blood?" I had not indicated testing to them in anyway.
Strange that isn't it, they told me about testing when my UK Nurse hadn't even bothered to mention it.
And that folks is the absolute truth.


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## Mark Parrott (Oct 23, 2017)

I banged my head last year and nearly knocked myself out.  Called an ambulance as I felt really bad.  He asked me if I had any medical conditions so I told him I was type 2.  He asked me what my blood sugars were this morning.  He didn't ask me if I test my blood sugars, just assumed I did.  Sorry if this is going o/t, but thought it was interesting.


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## everydayupsanddowns (Oct 23, 2017)

Mark Parrott said:


> I banged my head last year and nearly knocked myself out.  Called an ambulance as I felt really bad.  He asked me if I had any medical conditions so I told him I was type 2.  He asked me what my blood sugars were this morning.  He didn't ask me if I test my blood sugars, just assumed I did.  Sorry if this is going o/t, but thought it was interesting.



Very interesting I'd say.

I wonder if it's a question of averages though? I have a vague recollection that 50% of people living with T2 take insulin (will have to see if I've completely misremembered that). _Edit: Can't find a figure, but a report from 2014 shows that while the number of people using insulin has trebled recently, it's still a relatively small proportion of the 3.6million(?) T2 population. Not sure on the proportion on sulfs/glic etc._

Adding in those on sulfs and other hypoglycaemic agents, I wonder what proportion is left who are D&E with or without Met.

I suspect it's a sizeable number, but I'm not sure of the proportion of the whole population. Anyone know?


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## Mark Parrott (Oct 23, 2017)

I suppose he assumed being diabetic I would be on meds.  I did tell him my bloods were 5.8 that morning.  He was very surprised how low they were.


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## Bubbsie (Oct 23, 2017)

Mark Parrott said:


> I suppose he assumed being diabetic I would be on meds.  I did tell him my bloods were 5.8 that morning.  He was very surprised how low they were.


Relevant Mark...wonder how many believe...assume we test our blood sugars...I appreciate some do not want to...but...on the whole is there am assumption that we do test regularly...well the ambulance personnel seem to hold that view...it's not over the top Mark...when I posted the thread...I expected a couple of responses...if that...no idea it would get so much attention....it just grew & grew...only posted it after a message from a member saying they has seen somewhere  I had offered to help with a challenge...so decided to post the offer again...it just grew from there...all the contributions are welcome...every one of them.


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## mikeyB (Oct 23, 2017)

There aren’t any up to date figures available, but it’s only around 20% of T2s who are on D&E or Meformin alone. The proportion of T2s on insulin is increasing year on year. I’m not sure why this is, but I suspect it’s a big decrease in the reluctance of specialists to prescribe it. It is certainly getting more frequent to switch folk from one or two tablet types to insulin. 

Of course this is happening when T2 beta cells give up the ghost, so the T2 effectively becomes T1, but will carry the T2 label to the grave, so they can’t get pumps.


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## Ralph-YK (Oct 23, 2017)

Marsbartoastie said:


> When I was diagnosed T2 I was prescribed Metformin and told to lose weight by following NHS dietary advice...which is carb heavy. I was also told that T2 diabetes was a progressive condition and that in time I was likely to require more robust medication.





Bubbsie said:


> Ralph...I'm sorry to hear that...I'm assuming you mean 'more' in terms of advice...testing strips...education?


Diagnosis: Went into hospital with an infection. Asked if I was diabetic as it's more likely to have infection when your diabetic.
Then told to have the diabetic test done by GP when infection was clear.
Then told by same doctor (without more tests?!): "*You are diabetic!*" (As she left, I was brought lunch, with apple pie and custard!)
As I was waiting to be dischared I was given some tablets by the nurse. "Here's your prescription."
That was everything I was told.


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## Bubbsie (Oct 23, 2017)

Ralph-YK said:


> Diagnosis: Went into hospital with an infection. Asked if I was diabetic as it's more likely to have infection when your diabetic.
> Then told to have the diabetic test done by GP when infection was clear.
> Then told by same doctor (without more tests?!): "*You are diabetic!*" (As she left, I was brought lunch, with apple pie and custard!)
> As I was waiting to be dischared I was given some tablets by the nurse. "Here's your prescription."
> That was everything I was told.


Ralph...my diabetes was diagnosed in the exactly the same way as your...massive infection...hospital...after 2 weeks of intensive antibiotics...discharged...saw GP...nothing...no health checks...later when it was apparent I had high blood pressure...GP again...blood tests...diabetes diagnosed...advised by phone...collect prescription...book on an education course...which could only offer me a place in seven months time...educated myself...the rest you know...its not the way to effectively deal/manage with this condition...not the way patients should be treated...no wonder we have so many problems with good BG control...do you have all that you need now?...I hope so...is there any help you need?


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## Amigo (Oct 23, 2017)

Ralph-YK said:


> Diagnosis: Went into hospital with an infection. Asked if I was diabetic as it's more likely to have infection when your diabetic.
> Then told to have the diabetic test done by GP when infection was clear.
> Then told by same doctor (without more tests?!): "*You are diabetic!*" (As she left, I was brought lunch, with apple pie and custard!)
> As I was waiting to be dischared I was given some tablets by the nurse. "Here's your prescription."
> That was everything I was told.



I thought you’d been on a couple of diabetes education courses and seen the dietician Ralph?


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## Ralph-YK (Oct 23, 2017)

Amigo said:


> I thought you’d been on a couple of diabetes education courses and seen the dietician Ralph?


Desmond several months later. Had to ask about it. Doesn't cover how to manage diabetes. Doesn't tell you what you need to know about carbs. Does spend a lot of time fats & oils, cholesterol and arteries.
No help with management of diabetes.

Dietician, first seen a year after diagnosed. Told not to manage carbs, do nothing with diet to manage diabetes, ignore my BG levels, was unconcerned with management of my diabetes and went off on a stupid thing cause I'd had bacon (just the once in over a year!).


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## Amigo (Oct 23, 2017)

Ralph-YK said:


> Desmond several months later. Had to ask about it. Doesn't cover how to manage diabetes. Doesn't tell you what you need to know about carbs. Does spend a lot of time fats & oils, cholesterol and arteries.
> No help with management of diabetes.



Well after 3 years on here you must be an expert now Ralph!


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## Ralph-YK (Oct 23, 2017)

Ugh. I'm going to have to stop trying to post & edit using this tablet   Not really good for it.


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## Ralph-YK (Oct 23, 2017)

Amigo said:


> Well after 3 years on here you must be an expert now Ralph!


Closer to 2.  And I've still no idea if I can have porridge


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## Mark Parrott (Oct 23, 2017)

Ralph-YK said:


> Closer to 2.  And I've still no idea if I can have porridge


I've bought some overnight oats.  Will be trying them tomorrow for the first time.


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## mikeyB (Oct 23, 2017)

Um, topic drift?


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## Bubbsie (Oct 23, 2017)

Mark Parrott said:


> I've bought some overnight oats.  Will be trying them tomorrow for the first time.


Might try them Mark...let me know how you get on with them..that's.the beauty of testing...results after two hours...might just experiment with them myself.


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## Diabetes UK (Oct 23, 2017)

What a spectacular thread -  its great to see how much this thread has developed over the weekend - I must say it has taken me some time to get up to speed on this... There were rather a few points that have sought input from Diabetes UK so I shall attempt to address the main  queries that came up.

Firstly I would like to offer my apologies for any misunderstanding regarding comments about the thread coming to a natural end - certainly did not wish to hault discussion on such a passionate debate - I had the previous posts as not wishing to continue the discussion, a desire I was wishing to respect. There's so much energy here this is a momentum that should be harnessed and run with.



Marsbartoastie said:


> I can't understand why DUK doesn't organise a lobbying campaign on this issue.  It would work like this...
> 
> MPs want to keep their jobs so like to quell any unrest in their own constituencies.  DUK could ask all members to write to their MP raising this issue and asking what they plan to do about it.  At the same time they could write a 'letter to the editor' of their local paper whenever a diabetes related story is reported...or tag it on to a story about NHS funding/other cuts etc.  This would raise the issue in a more public arena and is likely to provoke a flurry of responses.  Newspapers like this sort of activity because is has local interest and fills column inches.  MPs hate it because it represents unrest in their constituency and makes them look inept.  Come on DUK...this forum is full of articulate, intelligent individuals who are willing and able to 'have a go'.  Harness that resource and let's tackle this issue head on.



Yes MBT - Lobbying, writing to MPs and involving newspapers are all great suggestions and something we are encouraging with our e-activist Online Action form . It's  also precisely what our Diabetes Voices Team support with - campaigning for change.  There was mention of involving the person in charge of campaigns? I will highlight this thread to a number of teams - but the Diabetes Voices team are dedicated to supporting you with raising issues locally and nationally, so I would encourage getting in touch with them for some guideance.   These are some of the successes from individuals who have started their own campaigns. All these people have found an issue and worked with us to drive change: 

https://www.diabetes.org.uk/Get_involved/Campaigning/our-campaigners

There is a lot of debate in this thread but as has been mentioned many times, we are all fighting for the same cause here-  so lets channel all this energy to where the change can happen - we are fighting these by putting pressure on decision makers at each level, that means working with individuals, working locally, regionally and nationally.


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## Diabetes UK (Oct 23, 2017)

Access to test strips (Testing Times) is one of our top priority campaigns, alongside another issue that has been raised in this thread - getting the right education (Taking Control) 
Campaigns - https://www.diabetes.org.uk/get_involved/campaigning

Some questions came up about how Diabetes UK approach tackling these key issues?
We tackle issues from all directions, working to drive change at each level.

*Individually*
Our advocacy team offer support to individuals to challenge decisions by their healthcare team - by giving people the tools to self-advocate, this means we can have the widest possible reach to offer support. We are know that wider change can be slow. We can't expect individuals to wait for these changes that could take a long time. Therefore, we have to offer support for people to challenge decision and find immediate solutions, so that they can access the strips they need right now.

*Locally/Regionally*
Regional Influencing Managers & Clinical Champions, who are also health care professionals, are fighting the corner for diabetes with local CCGS's, NHS healthboards, and local decision makers to bring diabetes to the top of the priority list for local areas. We now have 65 Clinical Champions across the UK and are expanding the project: 
https://www.diabetes.org.uk/professionals/resources/clinical-champions-and-networks

They will be working in their local area to drive change, with well-informed understanding of the key issues in their particular area.

*Nationally*
The Policy Team have been working hard to fight on a number of campaigns with a some recent successes. A key success was securing an extra £40 million national funding for Diabetes care in England, after it was announced as a national priority. You can see some of the subjects that we have raised in parliament here. 
As was mentioned previously we work with a number of MPs including Keith Vas who has done some great work in supporting Diabetes. Also the APPG: All Parlimentary Group continue to rasie diabetes as a national priority:
https://www.diabetes.org.uk/get_involved/campaigning/our-work-in-parliament/appg-2016-report-launch

Getting Diabetes firmly on the political agenda was our key focus during the General Election with our Diabetes Manifesto. We worked with MPs, Parliamentary groups and people living with diabetes to make Diabetes a national priority - see the Diabetes Manifesto: https://www.diabetes.org.uk/get_involved/campaigning/our-work-in-parliament/2017-general-election 

We recognise that change is needed. And we now want to lead this change. Listening to the people affected by diabetes is at the heart of this. The Future of Diabetes is a project that is going to help us work in a new way, understanding what our priorities are by listening to you. By raising concerns here - key threads can be fed back to the teams and will all help us to push for the changes that you want to see happen: https://www.diabetes.org.uk/Get_involved/Campaigning/The-future-of-diabetes 

Hope this helps you to get a wider of understanding of we are approaching key issues and the ongoing work that is being done across the country to push through changes in Diabetes care.


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## Marsbartoastie (Oct 23, 2017)

Thank you Hannah for the wealth of information.  Reading through the various links has kept me gainfully occupied and out of trouble for quite some time.

I've just signed up for _Diabetes Voices_ which would appear to be where my input would do most good.  I hope that the co-ordinator/s will give me plenty of opportunity to participate...especially, but not exclusively, around the issues of BG testing and education.

This thread has provoked excellent debate and raised the profile of the topic under discussion.  I trust that the views expressed by members of this forum have been clearly heard back at DUK Towers. 

NB: I would  also have registered to be an _e-activist_, but the link doesn't seem to be working.  I will try again tomorrow.


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## Vince_UK (Oct 23, 2017)

Marsbartoastie said:


> This thread has provoked excellent debate and raised the profile of the topic under discussion.  I trust that the views expressed by members of this forum have been clearly heard back at DUK Towers.


If it hasn't MBT, some serious questions need to be asked by the members of DUK


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## Bubbsie (Oct 23, 2017)

Hannah DUK said:


> It's also precisely what our Diabetes Voices Team support with - campaigning for change


I've had involvement with the Diabetes Voices Team  Hannah...it wasn't what I would describe as a positive...or productive experience...as highlighted below...so not for me at the moment...would have to give that some serious thought.

*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*


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## Vince_UK (Oct 24, 2017)

http://www.chroniclelive.co.uk/news/north-east-news/diabetic-man-hits-out-over-13795798
Interesting reading.. I have mixed thoughts on this to be honest.
I looked at the libre early on in my Daibetic journy and found the ongoing cost of the senors, £57 each with  2 week lifespan, totally unjustifiable.
The cost of the Libre unit itself was acceptable but the ongoing costs caught my breath.


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## Vince_UK (Oct 24, 2017)

Hannah DUK said:


> What a spectacular thread -  its great to see how much this thread has developed over the weekend - I must say it has taken me some time to get up to speed on this... There were rather a few points that have sought input from Diabetes UK so I shall attempt to address the main  queries that came up.
> 
> Firstly I would like to offer my apologies for any misunderstanding regarding comments about the thread coming to a natural end - certainly did not wish to hault discussion on such a passionate debate - I had the previous posts as not wishing to continue the discussion, a desire I was wishing to respect. There's so much energy here this is a momentum that should be harnessed and run with.
> 
> ...


There's a good start e-activist unable to access. see screen shot
Submitted to join Voices Team


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## everydayupsanddowns (Oct 24, 2017)

Vince_UK said:


> There's a good start e-activist unable to access. see screen shot
> Submitted to join Voices Team



Can’t really see the screenshot on my phone, but if the DUK website looks to be having gremlins you could try to message/contact @Stefan Diabetes UK 

I’ve always had a positive experience with Diabetes Voices, and have been supported by them to raise the profile of various issues (eg foot care). They offer training and support events for volunteers too. 

I’ve always been happy with the way interviews/quotes have been used for the things I have offered (eg for the recent Freestyle Libre campaign which you mention Vince).


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## Vince_UK (Oct 24, 2017)

everydayupsanddowns said:


> Can’t really see the screenshot on my phone, but if the DUK website looks to be having gremlins you could try to message/contact @Stefan Diabetes UK
> 
> I’ve always had a positive experience with Diabetes Voices, and have been supported by them to raise the profile of various issues (eg foot care). They offer training and support events for volunteers too.
> 
> I’ve always been happy with the way interviews/quotes have been used for the things I have offered (eg for the recent Freestyle Libre campaign which you mention Vince).


Thanks for the comments Mike


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## Bubbsie (Oct 24, 2017)

everydayupsanddowns said:


> Can’t really see the screenshot on my phone, but if the DUK website looks to be having gremlins you could try to message/contact @Stefan Diabetes UK
> 
> I’ve always had a positive experience with Diabetes Voices, and have been supported by them to raise the profile of various issues (eg foot care). They offer training and support events for volunteers too.
> 
> I’ve always been happy with the way interviews/quotes have been used for the things I have offered (eg for the recent Freestyle Libre campaign which you mention Vince).


You were fortunate then Mike...perhaps I should do a screen shot of the information I sent them when they asked me to feature on the web site re: the testing strips campaign...and the way it was summarised by the team...the contrast is astounding.


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## everydayupsanddowns (Oct 24, 2017)

Bubbsie said:


> You were fortunate then Mike...perhaps I should do a screen shot of the information I sent them when they asked me to feature on the web site re: the testing strips campaign...and the way it was summarised by the team...the contrast is astounding.


It would be really interesting to see that if you are happy to share it.


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## Bubbsie (Oct 24, 2017)

everydayupsanddowns said:


> It would be really interesting to see that if you are happy to share it.


I am not absolutely certain that would be a such good thing for the voices team Mike...I would say not their best work...however...I suppose we all have our off days...be happy to discuss/share my views with the voices team directly.


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## Stefan Diabetes UK (Oct 24, 2017)

Sorry about the problems with the webpage everyone. We're doing a bit of maintenance on the tool this week and something went wrong I'm afraid. It's all in working order now, though it will be looking better by the end of the week.

So @Vince_UK, or anyone else, if you want challenge restrictions you've faced, please feel free to use the tool. It'll identify the local body you need to contact and provide a template letter you can edit before sending. You can access the tool here: https://goo.gl/zKgq79

@Bubbsie We're sorry you weren't happy with our summary of your experience, and that in summarising we got the details of your experience wrong. We understand it's important to get these things right, and completely appreciate the reasons you chose not to go ahead with sharing your story in that way earlier this year. We'd be happy to talk about this, or anything else you'd be interested in campaigning on, in more detail. You can reach us on diabetesvoices@diabetes.org.uk, or I'd be happy to chat on the phone.


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## Dave Wyldes (Oct 28, 2017)

My question is how do you know when your BG is high or not if you cannot self monitor. I know when it is low but not when it is high. Having a review each year is not that helpful. A  lot of damage can occur between reviews


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## Ralph-YK (Oct 28, 2017)

Dave Wyldes said:


> My question is how do you know when your BG is high or not if you cannot self monitor.
> I know when it is low but not when it is high. Having a review each year is not that helpful. A  lot of damage can occur between reviews


We're not supposed to know.  I don't. Don't know when it's low either.
We're not supposed to be involved with our diabetes at all. That's why self testing is dismissed out of hand.


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