The epetition

[borofergie]

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).

The same experts who think that we should eat a 50% carbohydrate diet, or different ones?

Where is the evidence for feeding statins to women?

 

[lucylocket61]

So, in that case, we need them to do the research on meter testing with education - dont we. Instead of dismissing us out of hand.

 

[Paul1976]

AMBrennan wrote:
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).



Then if we are to just sit back and ignore what we have learned through dietary change and testing and just leave it to the 'Experts' who are frankly fueling the Grim NHS statistics through their 'terrible at best' mantra then God help us all!! :roll:

 

[Unbeliever]

If PCTs and GPs would accep and abide by NICE guidelines there would be no problem. But they don't. neither the letter or the spirit of it.
I am NOT in favour of tes strips for all indiscriminaely. This is where they went wrong in the past.

Try not to be too complacent about your own strips AM Brennnan We have had several posts on here from T1s who have had their strips restricted or made to wait for more because hey have used their quota,. The thin edge of the wedge. And something which fills me with HORROR.

I saw and experienced firs habd the waste which occurred whe tes strips were issued to all wih no proper educaion abou heir use,
if you read earlier posts you will see hat I am not he only one to take this view.

What i find disturbing is that the newly diagnosed are not even aware that self monitoring is possible . The diabees Nurses dealing wih t2s vary greatly in theiir qualifications, experience and competence . I think most would agree that 1s get a beter dea from heir HCPs.
Care for T2s has been "dumbed down" . High levels are now deemed accepable and patients are discouraged from taking conrol of their own health.
if patients are prepared o learn how o use the strips o advantage and can prove they are effective then he cos o the NHs will be wort iin savings on stronger medication as well as possible complications.
It was only the universal prescripion to all which was foolishly extravagant. the amunt the NHS pay for the strips is much less than tha paid by individuals. many T2s get litle enough from the £2k paid to theoir gps annually for theeir care.
Many here myself included have no personal axe o gring as we are prescribed strips but consider it unfair that the option of self -testing is not available to everyone who might wish to exercise it .

 

[Defren]

I have not signed it and will not sign it, for a very simple reason: This kind of thing should not be decided by popularity contest nor politicians (ultimately a popularity contest again). Just look at airport security theatre to see what happens when you get this wrong - after 9/11 everyone was screaming at the government to do something about the threat. As a result, they put in place a system of ludicrously expensive and almost certainly completely ineffective defences - what made the attacks so devastating was that they were unexpected, so the solution would have to try and guard against the unexpected rather than the specific thing the bad guys did last time.

NHS funds are finite, so whilst you can (depending on your financial circumstances) spend a lot on unproven treatments that you personally believe in, you cannot ask the NHS to pay for all of them. At the end of the day, every pound spend on diabetes care means that there's a pound less available for helping the babies with cancer.

Personally, I am a T1 patient so I get all the test strips on prescription but spend another £8 per day on CGM. Do I think that it helps me? Yes, sure, otherwise I wouldn't continue to pay for it? Would it be nice if the NHS paid for it? Well, of course. Do I, rationally, have any reason to think that it does anything? No, none whatsoever. As a result, asking the NHS to pay for it is wrong.

My understanding is that there is no evidence showing that testing is effective in T2. If that's incorrect, then give me a study and send a copy to NICE as well. They are not stupid, and they're not trying to kill us. I'm sure that there's ample funding available - all the big players have already developed products, and conclusive proof that every T2 patients needs to test 4x a day would instantly increase demand tenfold.

And please don't try appealing to my common sense and telling me that you can't know if your treatment is working without testing - that's an argument from theory, which is a bad. Textbook biochemistry is an excellent tool for producing hypotheses worth testing but not sufficient on it's own. If you want to have some fun, go look at any nutritional supplements. For example, Diabetone (IIRC this is the most popular product around here) has " These include L- Carnitine, Vitamin B1 (Thiamin), plus B6 and C, which are important factors in glucose metabolism.". That's an argument from theory, and entirely true - the important thing they're not saying is that this will *do* anything, because their own research shows that it doesn't do anything.

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).

I feel sad you won't help T2's. However, if there were ever a petition for something to help T1's, I would have no hesitation in signing. I do feel dejected, you feel you can't do such a small thing to help the millions of T2's who need strips.

 

[Paul1976]

Well put! :clap:

 

[desidiabulum]

This kind of thing should not be decided by popularity contest nor politicians (ultimately a popularity contest again).

I quite agree, but the problem is that it is and it will be. Healthcare funding is hopelessly bound up with politics, and with posturing towards supposed public opinion. It is already deeply compromised and distorted, and all diabetics may suffer as a consequence -- that is the point, and that is why patients have to look to play a public role. The point about our emphasis on proper education is that this is not inherently a funding issue.

 

[RoyG]

AMBrennan wrote "NHS funds are finite, so whilst you can (depending on your financial circumstances) spend a lot on unproven treatments that you personally believe in, you cannot ask the NHS to pay for all of them. At the end of the day, every pound spend on diabetes care means that there's a pound less available for helping the babies with cancer" A noble sentiment, but excuse me I am some ones baby (a big one) with Diabetes and a Father of 4 young boys and a Husband they depend on me, I have worked at Cancer hospitals and many other hospitals and seen how the boards in them waste money on staff whims so much so it made me sick. I have worked hard all my life, and paid my dues, I should expect good quality care. I never woke up this morning and said I want Diabetes. And me testing does help me: in that I know what food I am eating sends my blood sugar high, there fore I don't eat it. If I keep to that regime then hopefully in the future I will not put that extra strain on my health service, by not getting the complications associated with diabetes. am I and others not worth it? to keep me fit and healthy means I am paying into the system not draining it. I just don't understand that attitude???????

 

[lucylocket61]

every pound spend on diabetes care means that there's a pound less available for helping the babies with cancer"

Sorry, but that is irrelevant. It shouldnt be an "either/or" situation. And who is to say which patients are more imprtant anyway?

Typical knee-jerk reaction. If the NHS is in such a financial mess it cant provide adequate care for those who have paid into it for year, the problem is with the NHS, not the patients.

And who is to say testing meters and strips are ineffective? They didnt run a proper trial with the correct information and education for those using strips.

It would be like giving someone antibiotics. Not telling the patient to swallow them, then blaming the antibiotics for not working, and withdrawing them from use.

Ridiculous :twisted:

 

[xyzzy]

At the end of the day, every pound spend on diabetes care means that there's a pound less available for helping the babies with cancer.

Those poor babies didn't seem to worry you 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? Mind you I don't begrudge you a penny of it as they are excellent devices.

Personally, I am a T1 patient so I get all the test strips on prescription but spend another £8 per day on CGM.

Nice you can afford to self finance just under £3000 a year. There are many T2's who post on this forum who can't afford to self finance even one test strip a day. Realise that's not your problem and you've made it clear you don't give a **** but just saying...

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

Well here's one of many you can find if you look. I found it within 30 seconds of doing a g**gle search. Not only shows it works but shows it saves money too

A summary can be read here http://www.medicine.ox.ac.uk/bandolier/band148/b148-3.html

The study can be downloaded here http://www.journalofdst.org/September2007/pdf/VOL-1-5-ORG1-WEBER.pdf

Just one of many you can find if you can be bothered enough to look and don't just get brainwashed by the NICE or NHS line. In any event the e-petition does not state that all T2's should be given T2's as it effectively states only those where it is shown to be helpful or words to that effect. Again quite easy to spot if you hadn't have exhibited that so amusing TLDR attitude.

Let's also remind ourselves of what it does cost the NHS in terms of uncontrolled diabetic complications.

"NHS Payment by Results 2010-11 National Tariff Information" http://data.gov.uk/dataset/payment-by-results-2010-11-national-tariff-information

Amputation £3661
Cardiac Arrest £1645
Hyperglycemia £2221
Hypoglycemia £2168
Lower Limb Complication £2475
Stroke approx £3000

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.

 

[Paul1976]

Those monetary costs of complications as illustrated above,make VERY grim reading indeed,not only to the NHS budget but any Diabetic who is unfortuanate enough to develop and suffer any of these AWFUL complications.
Testing WITH education and dietary change could prevent so many unneccecary complications and early deaths.

 

[RoyG]

At the end of the day, every pound spend on diabetes care means that there's a pound less available for helping the babies with cancer.

Those poor babies didn't seem to worry you 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? Mind you I don't begrudge you a penny of it as they are excellent devices.

Personally, I am a T1 patient so I get all the test strips on prescription but spend another £8 per day on CGM.

Nice you can afford to self finance just under £3000 a year. There are many T2's who post on this forum who can't afford to self finance even one test strip a day. Realise that's not your problem and you've made it clear you don't give a **** but just saying...

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

Well here's one of many you can find if you look. I found it within 30 seconds of doing a g**gle search. Not only shows it works but shows it saves money too

A summary can be read here http://www.medicine.ox.ac.uk/bandolier/band148/b148-3.html

The study can be downloaded here http://www.journalofdst.org/September2007/pdf/VOL-1-5-ORG1-WEBER.pdf

Just one of many you can find if you can be bothered enough to look and don't just get brainwashed by the NICE or NHS line. In any event the e-petition does not state that all T2's should be given T2's as it effectively states only those where it is shown to be helpful or words to that effect. Again quite easy to spot if you hadn't have exhibited that so amusing TLDR attitude.

Let's also remind ourselves of what it does cost the NHS in terms of uncontrolled diabetic complications.

"NHS Payment by Results 2010-11 National Tariff Information" http://data.gov.uk/dataset/payment-by-results-2010-11-national-tariff-information

Amputation £3661
Cardiac Arrest £1645
Hyperglycemia £2221
Hypoglycemia £2168
Lower Limb Complication £2475
Stroke approx £3000

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.

Thanks Xyzzy could not have put it better myself, Just proves what my comments said earlier. Unbelievable.

 

[chris lowe]

I signed the e-petition then also posted on my facebook page so that friends could sign up too. If a lot of us did that it may explain the numbers now signed up compared with the number of forum members.

 

[RoyG]

Me too it's on My FaceBook page and web site https://sites.google.com/site/gallagherhomepage

 

[jopar]

They have done trails to evaluate the effectiveness of testing/education for T2's hence why the present stand on Test Strips, the one carried out in the 2000 showed no significant difference in outcomes for the two groups!

So those that make the decisions aren't working blind, they look at all available trail publications from respected validated medical journeys.. And these decision do have to be made on pure cold facts, costs and out comes at a group level and not at an individual level... It's harsh but the NHS only has a finite amount of money so it's down to is the outcome worth the cost!

NICE, has been brought in to insure that PCT's make a fairer decision concerning this, with specific quango's that look at all factors of a drug therapy, or piece of equipment they do look more at the individual bases... But again working out the costs involved, the gain made by the individual both in quality of life and spam of life... Then look it as a group cost before making a final decision... The quango's do include lay persons, I almost was a lay person for the last insulin pump review, but circumstances at the time, meant I couldn't commit the necessary time to the 2 year consultation period...

If you look at insulin pump therapy, the costs etc for this is based on Self-funding costs but most PCT's have negotiated their own supply contract with the manufacturer's which drives the costs down further, ask Roche the cost of my pump they will say £3000, but my PCT paid a lot less than that, same with consumables I couldn't get them as cheap self funding as my PCT do.. But there has been a lot other costs saving involved, such as in clinic time and GP/DNS time, less test strips used, no additional medication (BP tablets etc for prevention or treatment), less insulin and well the cost of MDI therapy is based on 4 needles a day, I regularly used 7/8 needles in one day! So another cost saved.. So the actually cost difference between using a pump and injecting per year is insignificant so well worth the investment of the initial cost of the pump both on a short term bases and a long term bases...

As already said, the NHS has only a finite amount of money that he can spend on patients, whatever their medical need is and it means for some people decisions to what and how the money is spent isn't what they hoped for, but take a look at other countries and their medical systems, which are built purely on 'Do you' the individual have the money! Take America for an example what depicts the diabetic treatment they receive? A Insurance company looking to make a profit and the money you have in your pocket! You either got to pay in full or foot part of the bill at the sources of service! No insulin, tablets or test strips ect even with medical insurance if you don't have the money in your pocket to pay your part of the bill!

But more importantly what is the 'Proper Eduction'

It's not being told what you can and can't eat, nor is it about using one piece of equipment, it about teaching people the difference between one type of carb against another, what it's reaction is, and what actions you can do to counteract it, by using this piece of equipment in this manner... So that if an individual decides to omit bread from their diet, they do so with complete understanding why and it's been proving by the piece of kit this for them as an individual is their best choice/action!

Here's an interesting example sorry it's based on T1... But it only just been published end of last month! http://www.dmsjournal.com/content/4/1/23/ Low carbohydrate diet in type 1 diabetes, long-term improvement and adherence: A clinical audit...

Now if you were deciding that you had a lump of money and two choices promote a low carb diet or use the money in another way, such as giving access to insulin pumps etc. making an assumption that the cost to implement both is going to be the same! or splitting the cost between the two in variable split!

If you read the whole trial data you find that well only 48% adhered to the diet of >75g's of carbs the outcomes at 4 years wasn't significantly different!

So are you going to plough all your fund pot into low carb educations, split available fund or opt for spending all the fund on access to pumps! What is the best method of funding that provides the most effective damage limitations for all the diabetics..

Plough all your money into low carb education, you end up with not a lot of difference and 52% who can't adhered to it.
Plough all your money into access to pumps.. Good damage limitations but really still doesn't provide the answer

So you split the money between both, but how?

You've need to decide what gives the maxim amount of damage limitations to all the diabetics!

Sorry for using a T1 example, but feel as it's so recent then it might give a better idea, what we all face when it comes to somebody making a decision that effects all...

 

[borofergie]

They have done trails to evaluate the effectiveness of testing/education for T2's hence why the present stand on Test Strips, the one carried out in the 2000 showed no significant difference in outcomes for the two groups!

The effectiveness of strips was evaluated using what dietary advice? 50% carbohydrate?

 

[lucylocket61]

Jopar wrote:
Plough all your money into low carb education, you end up with not a lot of difference and 52% who can't adhered to it.

But they havent educated diabetics to low carb. They have educated diabetics to have half their calories from carbohydrates. So the data they are basing their decisions on is flawed right from the outset.

And why is the funding so low? Why should diabetics suffer because the NHS hasnt allowed enough money to treat all of us. And then expects us to understand why treatment isnt there.

Quite apart from the point that a combination of low-carb education and testing equipment saves them money in the long run.

 

[Grazer]

So, read the posts from Ambrennan and Jopar. No surprises there then! No real positive contribution, just a justification of why we shouldn't waste money on testing for T2s [mod edit: getting personal].
Did either of you bother reading and understanding the petition? It states clearly "It is recognised that ongoing testing on certain medication regimes may need to be provided on a reduced basis according to the requirements of the individual patient."
i.e, the way out on costs. T2s given strips while they work out what they can and can't eat, but not in unlimited supply for ever if they aren't on drugs that could induce hypos.
You talk about either needing studies to show it's effective or claim to have studies that show it isn't; how about looking at the best study. The results of the educated (in diabetes) T2s on this forum, who frequently get HbA1c's in the 5s or low 5s by testing and amending diet. This when the NHS points out that the majority, who AREN'T on this forum and probably don't test, don't even hit the foolishly high advised target of "below 7". How much will they be costing the NHS in a few years time, compared with the cost of plentiful strips for a couple of quarters then just a few thereafter? And Jopar, I don't need to be patronised about how lucky we are to get some treatment compared to people in the USA or elsewhere. I've paid far more in tax and N.I than any American pays for their private health insurance.
The administration of this website helped to produce the petition, and they achieved it's publication, so if you disagree with it, i suggest you tell them rather than disrupting this thread. The thread is about HOW to promote the petition more, not IF we SHOULD. You are off topic. If you want to discuss that, I suggest you start a new thread of your own.

 

[RoyG]

As already said, the NHS has only a finite amount of money that he can spend on patients, whatever their medical need is and it means for some people decisions to what and how the money is spent isn't what they hoped for, but take a look at other countries and their medical systems, which are built purely on 'Do you' the individual have the money! Take America for an example what depicts the diabetic treatment they receive? A Insurance company looking to make a profit and the money you have in your pocket! You either got to pay in full or foot part of the bill at the sources of service! No insulin, tablets or test strips ect even with medical insurance if you don't have the money in your pocket to pay your part of the bill!

Well the NHS has had a fine amount of my money over my 37 years of working to date, That bull was the same rubbish that My Doctor came out with. OK let me opt out and put my NI on my own medical Insurance.

 

[dlmoak]

I'm from the USA so I don't really have a role in this fight, but that never kept me from having an opinion. The healthcare systems in both the US and in Britain have major issues. As to the effectiveness of testing in diabetes care, it is the main thing that taught me what I can and cannot eat. Testing when you get up in the morning and when you go to bed doesn't tell you much of anything, but if you are taught to test before and after a meal in which the carbohydrate is the only variable, you can learn a lot about yourself. My opinion represents a study containing only 1 individual, but I've never spoken with anyone else who used a meter that way that did not gain greater control over their diabetes.