strips

[Ralph-YK]

Good for them. I would never want to infringe on anyone's personal choice regarding their health.

What????????

 

[Ralph-YK]

Unfortunately, there are numerous people who probably don't test even when taking hypo causing meds as well as insulin. Some times caused by the I can't be bothered to test brigade and others who may of been told not required to test and rely on the hba1c tests to keep you on track. What could be worse is that some may not be aware of DVLA's guide lines on testing and are risking their driving licence.

Ones I've met have not been told anything about self testing. Nor given a meter or strips.

 

[everydayupsanddowns]

I lose a lot of people.

Seems simple to me. ANYBODY in a relevant position who wants to convince me that withholding testing equipment is a reasonable course of action is welcome to do just that. I class myself as reasonable and will listen.

LOL!

If you fancy a little homework, you can dig into the studies that were used to come to the 'do not routinely...' NICE recommendation.

You'll need to download the Full Guideline rather than the lighter weight 'public facing' version which you can get here:
https://www.nice.org.uk/guidance/ng28/evidence/full-guideline-pdf-78671532569

Then you'll need to flick to page 132 where it outlines the review question, "Should self monitoring be used to manage blood glucose levels in people with type 2 diabetes?" along with the PICO (population, intervention, comparison, outcomes) that was used to locate the research studies, which ones they used, and which ones they left out and why. Plus the health ecomonic evidence that was reviewed.

'Linking evidence to recommendations' is more or less an outline of the discussions that took place in the Guideline Development Group as they reviewed the evidence.

Unfortunately there are quite a lot of abbreviations and jargon used, and you may need to search around to separate your QALYs from your P values, but hopefully it will help you to understand why the recommendation came out as it did. (As an aside I believe that the Andrew Farmer who was part of the committee is the same Farmer who has published multiple studies that show SMBG 'doesn't work' - whether he was able to take part in the discussions I have not checked, but it would be interesting to run through the meeting notes for 'Conflicts of Interest'.

I'm not sure what the patient reps on the panel said at the time (there would have been 2 I think) - it would have been interesting to have been in the room.

 

[everydayupsanddowns]

I have had a metre for many years (freestyle lite) since being diagnosed t2 on 7th July I have been testing around six times a day.
as I have been put on metformin I asked the doctor if he could put the test strips on prescription to which he replied no because a body called NICE has told him not to prescribe strips for t2 patients on medication.
chemist charges £25 for 50 and around £15 to £25 on eBay.....
its proving expensive...

Sorry Dave! Your thread seems to have wandered off-topic into the dark and shady recesses of the technicalities of NICE.

As others have said, you should absolutely NOT take this as a done deal. Clinical care is supposed to be based around "no decision about me, without me" so you need to go to see your GP again and explain how this decision will negatively impact you and your self care.

Be prepared to explain how you are using the information that self-monitoring gives you. Especially if you can give specific examples of foods that have been recommended to you that you have discovered your body cannot tolerate.

You may find there is resistance to your testing 6x a day (because it is a very intensive testing regime, much more often seen in people using multiple insulin doses what need to be adjusted at each meal) so you need to be able to explain why it helps and why you choose to check BG when you do.

Be prepared to be flexible in your approach - if you feel you can reduce the number of BG strips needed after a period of intensive testing that will make it easier for your GP (lots of checking for 6 months while you test out different foods, then drop back to fewer strips just to occasionally check things aren't drifting or around new food items/illness).

If that isn't going to suit you you will need to be able to clearly explain why you need what you need. Why 6x? Why not 4x? Or 6x but only every other day... What is it about your life/work pattern/exercise pattern/etc that makes your checks important.

How much variation do you see? What do you do when you see it? What will you not be able to do without that flow of information?

I don't need the answers to those questions - but getting your own head around those things will help you put together a good argument as to why SMBG works for you as an individual.

 

[Bubbsie]

I still find it bewildering that you believe we are at odds over this @Bubbsie.

You and I both believe in test strips being used by people with T2 to improve their self care. You and I both recognise that NICE say this should not be a routine part of T2 care, that 'a case' needs to be made. You and I both recognise that there is 'wiggle room', that it is not an absolute 'No'. Even the studies that NICE based their decision on were not conclusive (DUK mention 'conflicting' evidence) and talk about 'specific sub-groups' where self-testing can be shown to be advantageous.

The OP that said that his Dr had said 'NICE say no'. Previously I have attempted to explain why Drs say what they say, and I think you have taken that to mean that *I* do not support SMBG for T2s on D&E and Metformin, which is not the case at all.

We are consistently arguing the same points!

Mike...I can't agree with you...there is more than just 'wiggle' room to secure testing strips on prescription...furthermore it's not the NICE guidelines that are the main problem here ..the.local CCG's are responsible for 'setting the tariffs' (figure of speech)...the CCG's are the real culprits...they say 'NO'...my GP was willing to prescribe yet warned me he would have to justify that decision to my local CCG...who were likely to intervene...stop him from doing so...he asked me to write to them...he believed what I had to say would carry more weight...I read the minutes of their (CCG) meetings covering this issue in minute detail...covered every point...saw how they interpreted the guidelines (incorrectly)...challenged them...I had a very grudging acceptance that my GP could continue the prescription (none of the individual poinst I raised were addressed)...many diabetes who are refused strips simply accept that...believe they can do nothing...so putting the NICE guidelines to one side for now...the CCG's are the ones who seem to wield the power here...they need to be approached...challenged...asked why they say NO routinely.

 

[Amigo]

Mike...I can't agree with you...there is more than just 'wiggle' room to secure testing strips on prescription...furthermore it's not the NICE guidelines that are the main problem here ..the.local CCG's are responsible for 'setting the tariffs' (figure of speech)...the CCG's are the real culprits...they say 'NO'...my GP was willing to prescribe yet warned me he would have to justify that decision to my local CCG...who were likely to intervene...stop him from doing so...he asked me to write to them...he believed what I had to say would carry more weight...I read the minutes of their (CCG) meetings covering this issue in minute detail...covered every point...saw how they interpreted the guidelines (incorrectly)...challenged them...I had a very grudging acceptance that my GP could continue the prescription (none of the individual poinst I raised were addressed)...many diabetes who are refused strips simply accept that...believe they can do nothing...so putting the NICE guidelines to one side for now...the CCG's are the ones who seem to wield the power here...they need to be approached...challenged...asked why they say NO routinely.

I know you've delved into the technicalities in greater detail Bubs but I'm still unsure as to whether the CCG can overrule NICE unless the clinician can demonstrate 'exceptionally justified departure'. I appreciate that this case relates to an entirely different health issue but I'm wondering if the case-law findings may apply in this case.

https://www.nice.org.uk/news/article/court-warns-ccg-over-disagreeing-with-nice-guidance

Without reading the transcripts in great detail that everydays has posted, I'm not sure how definitive or prescriptive NICE have been in guidance on allowing testing strips etc. for type 2's (particularly those not on hypo inducing meds).

I do know that cancers meds I may need have been absolutely vetoed by NICE for first line treatment and regardless of clinical superiority, the CCG's cannot allow it and my clinician is not allowed to prescribe it (unless on a clinical trial).
The whole QALY equation came into play and some very dubious research techniques looking into the economic health outcomes which they've obviously been able to manipulate nicely in the case of diabetes.

The issue to me is how definitive and specific the guidelines are because my understanding is that the guidance is 'testing strips should not ROUTINELY be given to type 2's' (except those on insulin, subject to hypos and at risk of hypos using machinery, pregnant or trying to get pregnant). 'Not routinely' seems to me to be an elastic argument and I've gathered the clinical and research data for my individual case to argue 'clinical exceptionality'. Shouldn't be necessary though if there was a more pro-active attitude towards diabetic management and health partnership.

 

[Bill Stewardson]

I still find it bewildering that you believe we are at odds over this @Bubbsie.

You and I both believe in test strips being used by people with T2 to improve their self care. You and I both recognise that NICE say this should not be a routine part of T2 care, that 'a case' needs to be made. You and I both recognise that there is 'wiggle room', that it is not an absolute 'No'. Even the studies that NICE based their decision on were not conclusive (DUK mention 'conflicting' evidence) and talk about 'specific sub-groups' where self-testing can be shown to be advantageous.

The OP that said that his Dr had said 'NICE say no'. Previously I have attempted to explain why Drs say what they say, and I think you have taken that to mean that *I* do not support SMBG for T2s on D&E and Metformin, which is not the case at all.

We are consistently arguing the same points!

Yes,, the wiggle room seems to be transforming into a no just lately, and without any prior notification to the patient.

I don't think for a second that DUK support or want this. Either way it is what is taking place all over the UK.

So,, what next ? These conversations need to be taking place elsewhere.
I believe the NHS own that responsibility.

 

[Bill Stewardson]

What????????

It's quite simple, if anyone chooses not to test (for whatever reason) that is their call.

 

[Bill Stewardson]

Unfortunately, there are numerous people who probably don't test even when taking hypo causing meds as well as insulin. Some times caused by the I can't be bothered to test brigade and others who may of been told not required to test and rely on the hba1c tests to keep you on track. What could be worse is that some may not be aware of DVLA's guide lines on testing and are risking their driving licence.

You have to wonder how many are not offered the choice. I asked and was told " you don't need one" If I had not asked it would not have been mentioned at all.

 

[Amigo]

Yes,, the wiggle room seems to be transforming into a no just lately, and without any prior notification to the patient.

I don't think for a second that DUK support or want this. Either way it is what is taking place all over the UK.

So,, what next ? These conversations need to be taking place elsewhere.
I believe the NHS own that responsibility.

I'd be interested to know DUK's view on this because I took exception to the last guidance I read from them which wasn't at all strong or campaigning in attitude or content in relation to testing strips for type 2's. I note that DUK were represented on the NICE group deciding these issues.

It represents such a strong body of opinion that I'd like DUK to take a more strident campaigning approach on the issue based on the clear views of its membership.

 

[everydayupsanddowns]

Mike...I can't agree with you...

asked why they say NO routinely.

I admire your passion @Bubbsie, but I think you are answering your own question - "do not routinely offer" vs "say no routinely"?

 

[Hazel]

From my perspective, as there does not appear to be an absolute, set in stone, answer to the question of test strips then it is up to the individual themself to fight for their own particular case should they disagree with their GP/DSN ruling.

 

[Ralph-YK]

It's quite simple, if anyone chooses not to test (for whatever reason) that is their call.

You have to wonder how many are not offered the choice. I asked and was told " you don't need one" If I had not asked it would not have been mentioned at all.

That's just it isn't it Bill, patients choosing not to test is not what we're talking about. It's self testing being dismissed, discouraged, undermined, lack of information and not being supported.

 

[Bill Stewardson]

That's just it isn't it Bill, patients choosing not to test is not what we're talking about. It's self testing being dismissed, discouraged, undermined, lack of information and not being supported.

Absolutely. This is one of those things where opposite views can have some validity at times.
It would be very helpful if we had an organised group pushing this on our behalf.

There really are ways to avoid the blanket no that is being rolled out across the country, nobody is showing any willingness to ask us, let alone listen.

Or come to that, put the case across on a wider front.

 

[Bill Stewardson]

That's just it isn't it Bill, patients choosing not to test is not what we're talking about. It's self testing being dismissed, discouraged, undermined, lack of information and not being supported.

I just thought the point needed to be made, not every D will want to test.

Some hate needles and blood etc.

 

[Bill Stewardson]

From my perspective, as there does not appear to be an absolute, set in stone, answer to the question of test strips then it is up to the individual themself to fight for their own particular case should they disagree with their GP/DSN ruling.

I see your point Hazel.

So, will all patients with conditions that could end up being very serious have to start doing that ?? FIGHT the clinicians ?? Argue that they're ill enough ??

Prove that they know which food doesn't put their numbers up without testing ? Can anyone confidently tell a D ( let alone millions of them) that it's ok to eat such and such, and always will be ?? Guarantee that they will suffer no detriment in between blood tests at the surgery ??

On the one hand I was discouraged from riding my Yamaha 1300, on the other I don't need to test ??

 

[Bill Stewardson]

I'd be interested to know DUK's view on this because I took exception to the last guidance I read from them which wasn't at all strong or campaigning in attitude or content in relation to testing strips for type 2's. I note that DUK were represented on the NICE group deciding these issues.

It represents such a strong body of opinion that I'd like DUK to take a more strident campaigning approach on the issue based on the clear views of its membership.

It is reasonable to see DUK as a representative of the NHS on this subject.

I have asked DUK to state its position , hopefully they will.

 

[Bubbsie]

I admire your passion @Bubbsie, but I think you are answering your own question - "do not routinely offer" vs "say no routinely"?

Mike lets not fudge the issue...the CCG's are the ones who say no...not just to diabetics either...many GP's want to prescribe what their patients need...but...their hands are tied by local committees...my GP can no longer prescribe ant-fungal creams for his patients...in addition to other medications now 'withdrawn'...those that cannot pay...go without...about time the local clinical commissioning groups were taken to task for the stronghold they place on GP practices...and patients in need.

 

[Amigo]

I still believe it's NICE who formulate the script for the CCG's to follow. They use it as clear clinical guidance based on the 'research of economics' NICE allegedly carry out.

 

[Bubbsie]

From my perspective, as there does not appear to be an absolute, set in stone, answer to the question of test strips then it is up to the individual themself to fight for their own particular case should they disagree with their GP/DSN ruling.

That is not what the health service is about...the whole ethos is/was universal care...what about those that cannot 'fight' their own cause...shall we leave them to wallow in the mire?...not about division...those who get...those who don't...perhaps we ought to think about how/why the NHS came to be... it was needed to provide health care for ALL...not just some...bureaucracy/administration is a problem...how much money is wasted on top heavy management...quangos...needless layers of administrators...there has to be continuity... if the medication is right for one...given to one...then all should have it...we can't just stand by and say it was given to me without issue...I won't help you 'fight' to get the same...not what our welfare state is about.