The epetition

[borofergie]

Costly business diabetes in dogs, when I had my dog at the vets last year there was a fella in front of me paying for his dogs insulin and syringes and the bill came to around £48, don't know how long a period this was for but made me pleased I have insurance cover on my dog.

You should try having T2 Diabetes. £48 is less than the cost of a month's test-strips. Our National "Healthcare" Insurance doesn't cover it.

 

[RoyG]

Im going to get one of those SD Codefree meters just watched a DUK demo on youtube they look ok does what it says on the tin and £4.99 for 50 strips great value. But will someone tell me where they get the wooden demonstrators from for the videos, I am sure I could do a better job, they are always reading script of the auto cue so obvious, make me laugh every time.

 

[ShyGirl]

 

[Defren]

Im going to get one of those SD Codefree meters just watched a DUK demo on youtube they look ok does what it says on the tin and £4.99 for 50 strips great value. But will someone tell me where they get the wooden demonstrators from for the videos, I am sure I could do a better job, they are always reading script of the auto cue so obvious, make me laugh every time.

Roy, the Code free is fine, BUT, do be aware it seems to read slightly high, so you will have to take that into account. I have my CF in the drawer as an emergency, I like my little CF. My Accu Chek eats batteries at a ridiculous rate, the CF certainly doesn't.

Shy girl, Try EBay or Amazon. I got mine on Amazon and my strips were £6.99 for 50. I now have a meter and strips on script, so don't use it, but it's a good machine, but as I say, does tend to read slightly high.

 

[noblehead]

You should try having T2 Diabetes. £48 is less than the cost of a month's test-strips. Our National "Healthcare" Insurance doesn't cover it.

Yes it is an outrage for those who are denied test strips on the NHS.

 

[borofergie]

You should try having T2 Diabetes. £48 is less than the cost of a month's test-strips. Our National "Healthcare" Insurance doesn't cover it.

Yes it is an outrage for those who are denied test strips on the NHS.

:thumbup:

 

[RoyG]

Shy Girl, Ebay, homehealth-uk the full kit with 50 strips £15.95 just make sure you check the box the you are DB,

 

[RoyG]

Im going to get one of those SD Codefree meters just watched a DUK demo on youtube they look ok does what it says on the tin and £4.99 for 50 strips great value. But will someone tell me where they get the wooden demonstrators from for the videos, I am sure I could do a better job, they are always reading script of the auto cue so obvious, make me laugh every time.

Roy, the Code free is fine, BUT, do be aware it seems to read slightly high, so you will have to take that into account. I have my CF in the drawer as an emergency, I like my little CF. My Accu Chek eats batteries at a ridiculous rate, the CF certainly doesn't.

Shy girl, Try EBay or Amazon. I got mine on Amazon and my strips were £6.99 for 50. I now have a meter and strips on script, so don't use it, but it's a good machine, but as I say, does tend to read slightly high.

I have 2 the Contour and the Aviva the contour always seems to give higher readings than the Aviva , so I use the Contour as I was told not to keep swapping meters it sends you nuts. I will have 3 now?

 

[xyzzy]

MeDave, I've only just got in to see these responses so I'm not trying to reopen the argument just respond to the points that were addressed to me.

Now I nor AmBrennen brought up T1 diabetes or even mentioned pumps first, but when Xyxxy says things such as

when you cost the NHS around £3000 for the pump and probably an ongoing £1000+ a year on its consumables. Presumably you could of remained just injecting the old fashioned way?

Now, pointing out that this statement is wrong, I should have added that the NICE costings are based on an 4 year period, my pump cost about £2000 isn't due to be replaced until needs be, it has an estimated lifespan of 7 years, last year alone I saved £753 in clinic time, if I work it out over the last 4 years of pumping, I saved around £2500 in clinic time, so savings made in clinic time alone has covered the cost of the pump! I would estimate if everything stays the same by the end of the 7 years my treatment would have cost less than using the 'old fashioned' injections!
As I didn't bring up the subject of pumps or even T1 funding, I think the above could be said an positive contribution!

AmBrennen did raise the issue of pumps by making this statement

spend another £8 per day on CGM

As far as I'm aware a CGM is a device that works alongside a pump. He stated he self financed the CGM so I would assume the pump it works with was prescribed by the NHS. If there were cost savings to made by supplying all T1's with pumps I'm sure the NHS would prescribe far more of them to save money. There are NICE guidelines as to how you get eligible to get a pump presumably because of the cost. I looked up the guidelines to see what reasons someone could get a pump on the NHS before making my post they can be read here. http://www.nice.org.uk/TA151 It's a shame the conditions imposed are so restrictive. I made it clear in my post I thought pumps are great things and should be prescribed to as many T1's as possible. In the context of the thread I was hoping to point out that it's a shame similar NICE guideline restrictions apply to T2' s and testing.

I got the information on costs of pumps from DUK http://www.diabetes.org.uk/Guide-to-diabetes/Treatments/Insulin/Insulin_pumps/ I don't believe based on the fact the pump is CGMable that the £3000 cost I stated would be far out. In fact I chose the minimum consumables cost.

Insulin pumps cost between £1000 and £3000. There are additional costs for the consumable attachments, eg infusion sets, batteries and pump reservoirs, which you may also have to pay for yourself. Consumables could amount to between £1000 and £2000 per year.

AmBrennen made the comment that any money spent would be less money available for

helping the babies with cancer

I simply agreed with him and pointed out that when he made the decision to ask for a pump he must have decided that getting the NHS to pay for his pump and consumables and possibly reducing care for

helping the babies with cancer

hadn't seemed to effect his decision.

Problem with excepting anecdotal information from forums such as this, you have now way of validated the information being provided not even whether several usernames posting claims are actually individual people or just one person using several accounts! And that's before you consider are they giving accurate truthful information and adhering the methods they claim to be using!

That is the biggest load of rubbish I have ever seen posted on this forum.

Firstly in the context of the AmBrennen post that claimed there was no evidence that testing for T2's works I found within 30 seconds a fully validated study of thousands of T2's which showed it does work and saved the German health care system a load of money. If I found that study so quickly I'm surprised you or AmBrennen hadn't known about it either as it is quite well known. I would point out Jopar that the study I referenced is one done in 2007 so is a later one than the 2000 study you referenced. I did see your reply to me yesterday about that but to be honest I couldn't be bothered to enter into a debate with you over it as your negative views regarding T2's and their need for testing are well known and I had more important things to do.

Secondly I am sure the administrators of the site can work out when someone maybe operating multiple accounts using a number of techniques. Spotting IP addresses are the same and even if the IP address is dynamic its still apparent its likely to be the same person if what's called the traceroute is identical apart from the final hop. Most major forums will have a database of users and their normal IP addresses which warns the admins if for example someone who is banned tries to get back onto the forum under a different name. As an IT expert of nearly 35 years in the industry there are other ways forums can determine false accounts that I will not reveal. Even if IT measures are avoided there are writing styles to consider. It is very difficult for someone using multiple accounts to hide a common writing style be it actually how they punctuate .... or how they portray themselves. Lots of people have give away phrases etc. and mannerisms so claiming lots of the posters on this forum are one person using multiple accounts is both farcical, offensive and shows paranoia in my opinion.

Finally I take it you realise you have just accused many members of this forum of being liars by saying

And that's before you consider are they giving accurate truthful information and adhering the methods they claim to be using!

I would like you to clarify you don't include me in that statement please.

TL;DR: The decision about which medical interventions should be financed should be made by experts in the relevant field (which we are not) who are familiar with the relevant research (which we are not) and thus able to make an informed decision (which we are not)."

What a sad grey drab view of life you have. If everyone had such a blinkered and naive view as that nothing would ever change.

Now I wouldn't say what AMBrennan wrote as blinkered!

We are biased and looking at everything from purely a personally view point, we need people who can take a step back to look at the bigger picture, and read between the lines of information put forward to them so they can make an unbiased decision in everybody's interest and not just our own and our view point, as we are only expert in our own diabetes..

No I stand by my original statement. I simply do not agree with AMBrennan arrogant attitude. Arrogant because of the throw away use of

TL;DR

or "Too long; Did not read" To me this just showed that he couldn't be bothered to even read the e-petition because he was going to disagree with it whatever it said which I thought showed a remarkable arrogance of view. Either that or the statement that followed which effectively says just blindly believe what others tell you as in...

The decision about which medical interventions should be financed should be made by experts in the relevant field (which we are not) who are familiar with the relevant research (which we are not) and thus able to make an informed decision (which we are not).

means he isn't arrogant as I initially supposed but someone who just blindly believes everything he told.

Either way round I stand by my viewpoint that someone who exhibits either of those traits is in my opinion blinkered and naive as most people realise there are always opposing viewpoints and motives to any stated position.

 

[Unbeliever]

I don't know the history of test srip use and prescription by the NHS but imagine that at some stage before any decision to issue them to T2s was made there must have been some cosultation/research etc.
Anyone know anything about that?

 

[xyzzy]

Shy Girl, Ebay, homehealth-uk the full kit with 50 strips £15.95 just make sure you check the box the you are DB,

make sure you get the UK model that measures in mmol/l and not the US model that measures in mg/dl or the numbers will look all wrong.

 

[jopar]

So, to get back on topic.....

What seems to be emerging is that our experience doesnt count as it is anecdotal evidence.

So maybe we need to find a respected researcher who will do the proper research and record the findings in a way that is acceptable to the Establishment in order to be taken seriously and be believed by the NHS.

I respectfully suggest that this should be our top priority. Once the facts are established, then we can move forward to have them accepted and implemented.

Anecdotal evidence isn't used due to not being able to validate it, if you consider Key's and his studies outcomes, his conclusions are now being debunked on the pretext that some of the data collected was anecdotal so tainted the outcomes!

I'm not being hostile, just getting you to think about the bigger picture how the system works, who makes the decision how they make them and what constraints are involved etc...

You and I, may know the benefit of testing that enable diabetics to change their lifestyles for the better, but in the case of T2's they are on fighting a battle from the back foot... the general public perception of T2's diabetics, and information contained within in current trail studies and what the powers to be see within this information that the base their decisions on at group level...

And its this that you've got to get around... And over the 10 years or so that I've been involved with diabetic forums I constantly seen the mistakes being made ignoring or not understanding the above... Which ends up alienating both Joe Public and decisions makers...

 

[phoenix]

I don't know the history of test srip use and prescription by the NHS but imagine that at some stage before any decision to issue them to T2s was made there must have been some cosultation/research etc.
Anyone know anything about that?

According to this not:

‘The widespread use of SMBG
(particularly in type-2 patients) is a good example
of self-monitoring that was adopted in advance
of robust evidence of it clinical efficacy’.

O'Kane and Pickup, quoted on p 42 in
http://www.hta.ac.uk/fullmono/mon1412.pdf
This is the 2010, UK Health Technology Assessment Self-monitoring of blood glucose in type 2 diabetes: systematic review.
a document that reviews both other reviews and a large number of studies and is what authorities in the UK will presumably use as justification for refusing strips. There are nuggetts in it that describe the type of research needed to indentify those who might benefit from SMG.

xYZZ

If you are referring to the Weber analysis of the ROSSO study, there are justified criticisms of the Rosso study as described here:
http://www.springerlink.com/content/a34 ... ltext.html
and the Weber cost analysis is dismissed in the HTA document

However, the generalisability of the study
is limited by the ROSSO source data being drawn
from a longitudinal retrospective study, not a
randomised trial. Tiley110 noted that SMBG could
not be considered to be the sole source of the risk
reduction. Other interventions would also have
‘played a part in the outcome; these including
regular educational input, regular screening
and more regular dietary advice and medical
consultation’ among the SMBG group.

Sorry to be negative but unfortunately I think that using data that has already been considered will not help your cause. The HTA authors are fully aware that certain patients groups advocate the use of self monitoring and attended a DUK workshop where they heard the concerns of some people with diabetes. They say

Thus identification of potential
subgroups of those patients who would receive the
most benefit from SMBG should be identified,
perhaps by some qualitative work to identify
characteristics of those most likely to benefit
(which may be about patient attributes rather than
treatment) followed by a RCT.

Perhaps this would be the type of research that DUK should and does sponsor, it certainly comes within their remit.
Pragmatically no-one here, unless someone here has a very large pocket and wants to give some research funds to a University is in a position to do this type of research.

 

[lucylocket61]

I'm not being hostile, just getting you to think about the bigger picture how the system works, who makes the decision how they make them and what constraints are involved etc...

I didnt think you were being hostile Jopar

But I do find your method of communicating rather patronising. I am perfectly capable of seeing and understanding the bigger picture etc. But i dont agree with the conclusions being drawn from it. And i feel uncomfortable replying to you as you seem to feel bullied or piled on when someone specifically replies to you, which is not my intention.

Any way, back to the subject:

I am focussing on how to get test strips and proper education for T2's. That is the extent of my focus at this time.

You and I, may know the benefit of testing that enable diabetics to change their lifestyles for the better, but in the case of T2's they are on fighting a battle from the back foot... the general public perception of T2's diabetics, and information contained within in current trail studies and what the powers to be see within this information that the base their decisions on at group level...

Good point. So what is needed is a way of changing public perception and holding a proper trial to back up the need for test strips and education.

Any volunteers?

 

[xyzzy]

Sorry to be negative ...

Don't mind at all Phoenix. I agree the UK authorities have made their minds up based on reviewing a range of studies. Some of those studies will have shown positive results and some negative and I have stated as such in previous posts on this thread. However this was not however my objection to what I considered to be the oveall arrogance of the AMBrennan post. This is the objection I had:

My understanding is that there is no evidence showing that testing is effective in T2.

I just posted the link to the Webber research as a way of refuting AMBrennan statement to show he was completely wrong to make such a general statement. As you state at the end with competing data sets from various sources all of this is largely down to the relevant UK policy makers and their "expert" opinions.

I disagree with those "expert" opinions as for example testing has patently worked very successfully for many T2 members of this forum but I realise that counts for nothing. However AMBrennan's final paragraph stating

TL;DR: The decision about which medical interventions should be financed should be made by experts in the relevant field (which we are not) who are familiar with the relevant research (which we are not) and thus able to make an informed decision (which we are not).

is telling T2's in what I consider to be a most arrogant and condescending way just to believe what we are told against our better judgements and experiences. I assume given the tightly controlled nature of how the e-petition is worded regarding the supply of strips and the evidence (be it anecdotal) that you have seen on this forum that you signed the petition and don't have a similar blinkered attitude?

 

[xyzzy]

So, to get back on topic.....

What seems to be emerging is that our experience doesnt count as it is anecdotal evidence.

So maybe we need to find a respected researcher who will do the proper research and record the findings in a way that is acceptable to the Establishment in order to be taken seriously and be believed by the NHS.

I completely agree Lucy however the issue of whether or not it works is only one aspect in this. As Phoenix has pointed out cost is also a consideration. Regardless of whether you or I say it works the HTA came to the conclusion that it didn't. Whether or not you or I believe they came to the wrong conclusion is irrelevant I'm afraid.

and the Weber cost analysis is dismissed in the HTA document

However, the generalisability of the study
is limited by the ROSSO source data being drawn
from a longitudinal retrospective study, not a
randomised trial. Tiley110 noted that SMBG could
not be considered to be the sole source of the risk
reduction. Other interventions would also have
‘played a part in the outcome; these including
regular educational input, regular screening
and more regular dietary advice and medical
consultation’ among the SMBG group.

Given the move to largely handing over treatment of T2's to GP's in the up coming government reforms that is the group we will need to persuade in my opinion. If GP's can be persuaded that T2 testing can under using strict guidelines save them money it will be adopted whatever the case as "money talks".

 

[noblehead]

Given the move to largely handing over treatment of T2's to GP's in the up coming government reforms that is the group we will need to persuade in my opinion. If GP's can be persuaded that T2 testing can under using strict guidelines save them money it will be adopted whatever the case as "money talks".

Could also go the other way once gp's take control of the NHS purse. In today's email from DCUK site it states that test strips only account for 1% of the NHS budget spent on diabetes care, doesn't sound a lot but compared to the treatment of complication derived from uncontrolled diabetes.

 

[xyzzy]

So, to get back on topic.....

What seems to be emerging is that our experience doesnt count as it is anecdotal evidence.

So maybe we need to find a respected researcher who will do the proper research and record the findings in a way that is acceptable to the Establishment in order to be taken seriously and be believed by the NHS.

Another answer to the same points Lucy that offer a solution in my opinion.

At the point a T1 is given a pump they normally have to enter into some form of contract regarding its use with their local health authority. So for example http://www.onelcommunityservices.nh...elines_for_Insulin_pump_therapy_provision.pdf which are the guidelines for NE London. As pumps do cost the NHS additional money those who have them are expected to attend clinic appointments and show that their level control is good on the pump. If they fail to do those kind of things the health authority reserves the right to take the pump away.

Wouldn't adopting a similar patient contract based system for T2's and strips be just as good an idea and equally applicable. If the person concerned signs the contract and then does not benefit for whatever reason strips are then withdrawn. To me this seems away around the anecdotal evidence argument.

 

[RoyG]

And that is the reason why I am charting all my readings, Blood pressures, Pulse, weight, waist size and my food diary and carb intake with notes showing my general demeanor. Whilst I can afford the strips, it may just show him. That it does not make you paranoid as he & DSN suggested it would. Does give the patient the tools needed to have a direct impact on their condition for the better. Maybe the next patient that he diagnoses who cannot afford the strips may well benefit, so long as they are shown how to use the information they gather. but while they stick to the NHS diet I don't know how? That is another story.

 

[xyzzy]

And that is the reason why I am charting all my readings, Blood pressures, Pulse, weight, waist size and my food diary and carb intake with notes showing my general demeanor. Whilst I can afford the strips, it may just show him. That it does not make you paranoid as he & DSN suggested it would. Does give the patient the tools needed to have a direct impact on their condition for the better. Maybe the next patient that he diagnoses who cannot afford the strips may well benefit, so long as they are shown how to use the information they gather. but while they stick to the NHS diet I don't know how? That is another story.

Yes in the end that worked partially for me. I waited for 3 months got good results and took my readings to the GP. He relented and prescribed me some strips. Not really enough so I'm still having to self fund some of them but better than nothing. Wouldn't it have been so much more effective to have had me sign a "I'll be a good boy and try my best" contract, got an adequate supply of strips and then had that supply reviewed after the 3 month period. Would have saved me a few hundred quid which of course should have all been covered by the £2000pa the surgery gets for me being registered as T2 on their book anyway.