The epetition

[borofergie]

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.

That's a great point Malc. If I paid for American style health insurance, I'd get the strips. If I want to pay for Private Health insurance here, I still have to pay tax and National Insurance contributions.

 

[Unbeliever]

The only thing that helped to reduce my bg levels was to reduce carbs. Because i was borderline underweight on diagnosis the dietary advice i received was limited to GI which I was already using. Had I even been given access to any information about reducing carbs it might have saved the NHS thousands.

I was given test strips and a meter and told to tes t"for the doctor". I was very sick with metformin and my levels actually rose.

I do not THINK I am a particularly stupid person. I knew something was wrong but i was an exceptionally busy persontoo.. A demanding and responsible job and caring responsibiliies for 3 vulnerable people besides running my own home and taking care of my family.

I literally did not have time to research.
So, I was given increasingly strong meds over a short period of time none of which appeared to help . I had no complications up to this point. Then I was given another drug which worked only too well and here i am 5 years down the line now with good levels after reducnig carbs but so far the complications are not responding and I am one of those costing thousands with my complications despite my best efforts and the best efforts of my fantasic consultant . It really worries me o be the cause of such an expense to the NHS.
I pay for as many strips myself as I can afford and even suggested to the hospital that perhaps the money spent on my treament would be better spent on a younger patient. The surgeon assures me hat he has learnt a great deal from treating me and often uses me in his teacing sessions and demonstraions . The exceptiom that proves the rule.!Helps assuage my conscience a little.

Had I been given access to thedietary information which would have worked for me at the same time as I was given the test strips and meter the NHS debt might have been reduced by several thousands.
I would argue that testing supplies without education or more appropriate dietary advice were actually counter productive.

Had I not had to produce my readings to the diabetes specialist doctor he would not have been panicked into increasing my medication so quickly and i might not be in the situation I am now in -facing a "25-50% risk of blindness every few months with the injections and I would not currently be such a drain on NHS resources.

I was diagnosed in 2007. I was there . My practice had a specialist diabetes GP. There was no educaion about the use of self testing at all. let alone with useful dietary advice. I knew T2s in other parts of the country. You tested your blood so that the docor could
decide upon your medication. I have 2 cousins who are GPs , They agree that this is an accurate descripion of how it was.
Certainly no one wants to revert to the bad old days. Strips for all for ever with no quesions asked..
Why shoud self testing only be available to those fortunate enough to be aware of it and confident enough to be able to demand the opportunity?

 

[jopar]

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.

Yes I did read and understand the petition, which is asking the government to implement something that already has NICE guidelines for it to happen!

No real positive contribution, just a justification of why we shouldn't waste money on testing for T2s and instead should save it for worthy causes like Jopar's pump.

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!

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

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!

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.

I did not disrupt this thread or take it off track, nor did I bring pumps or T1's into the thread, all I did is read what T2's said, and decided that due to misconceptions being touted that I would put the record straight and also explain as it seems that a lot do not know how decisions effect us all are actually made!

So please don't patronise me, by shouting at me, or anybody else who may not agree with you! After all like you I've spent years paying Tax's and N.I's, due to my age not only have I always paid a percentage of my wage (missed the fixed stamp rates) and find myself in the position that I will continue to do so, until I'm 67 instead of 60 and it seems that I might not be able to retire until I'm 70 :shock: but yes gripes around this is another story for another thread...

"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)."

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..

Those who believe that they know better than somebody else are blinkered by their own bias!

But on a personal levels, e-petitions isn't the way to go, as it's existence is purely a government smoke screen to pacify the electorate into thinking that our opinion count and the government will listen!

The way to go is letting people know that NICE guidelines are there, they have a right then show them how to build their case to enforce their legal right to be obliged by their GP/PCT....

So working from individual patient, and let the message filtered upwards...

 

[Paul1976]

Jopar,Why the hostility to Type 2's? I'm not type 2 BUT I see us all as 'Diabetic',nothing more,nothing less,we ALL face challenges with achieving good control,NO MATTER how we achieve it.I'm proud to have signed the petition and have got others to do so because the whole ethos of the petition is,something I REALLY believe in wholeheartedly..I just don't get your motives

[mod edit: reference to a closed report]

 

[borofergie]

I'm not type 2 BUT I see us all as 'Diabetic',nothing more,nothing less,we ALL face challenges with achieving good control

You were until we kicked you out, mate.

 

[Paul1976]

I'm not type 2 BUT I see us all as 'Diabetic',nothing more,nothing less,we ALL face challenges with achieving good control

You were until we kicked you out, mate.

I can still buy a season ticket though can't I guys? :crazy:

 

[Defren]

I'm not type 2 BUT I see us all as 'Diabetic',nothing more,nothing less,we ALL face challenges with achieving good control

You were until we kicked you out, mate.

I can still buy a season ticket though can't I guys? :crazy:

Don't you listen to Stephen, he is a Middlesbrough fan after all. :lol: You can be an honorary T2!

 

[phoenix]

NHS Costs and knocking the NHS
A bit of a rant.
I sometimes feel that people often don't realise how little that the NHS costs. We pay taxes on my husbands service and my teacher's pension in the UK ( non voluntary) + I pay NI (voluntary ) so though I have no rights to health care in the UK I think I still have the right to an opinion. I live elsewhere in a country with excellent health care but I know it comes at a cost.

We also pay to belong to the health care scheme in France, this is based on our residual income, I know exactly how much we pay and how much I receive. (OH hardly receives anything). We quite frequently have to pay 'upfront' .We get an itemised list of all the costs every month so we are informed of every euro spent.

For non chronic disease (ie other than my diabetes) I would only get 70% paid for by the social security so have to have a private insurance on top of the healthcare scheme for any eventualities. There are some costs that come out of pocket and are neither reimbursed by the healthcare system nor the insurance (a euro on every visit, box of medicines, blood test etc for a start) What we pay to the health care scheme + insurance here would perhaps just about pay for my pump and diabetes supplies/tests/visits each year. As in the UK the pump costs less than it would to a private individual.

In the UK ,my father has recently had open heart surgery, before that it was double knee replacement surgeries and hand surgeries, my mother has had similar interventions and now has £1600 a month nursing home fees paid for.Yes, they've paid for a lifetime but I doubt they have paid as much as they have received in their latter years
Unless people are prepared to pay more for their health care then they have to accept that scrutinising the costs and possible benefits is important . (and if you do a google search you will find that the UK has one of the most cost effective systems in the world.

Universal health care as epitomised by the NHS and other European systems are a form of insurance where we all pay for other members of our society in the hope that we won't need it ourselves but it will be there if and when we need it, Universal healthcare removes some of out fears for the future. I know just how worrying it is when you fear you will have no coverage, as happened to us when there was an attempt to change the law retrospectively . No-one living legally in the UK has that fear. As it is all our futures, it is important that the 'pot' of money is used wisely.

Self Monitoring
Since strips are expensive, I can understand why the NHS looks on self monitoring as an expense that, if not justified, would warrant being reduced.
Personally, I'm convinced that for some individuals they are good value but I don't believe that everyone would make good use of them.
The evidence from the Cochrane review however, suggests that prescribing strips is not beneficial, except perhaps for those newly diagnosed .That is the type of review that its considered evidence. Anecdote is not valid evidence, the experiences of a small number on internet forums won't be considered as such.
Somehow I think you have to show that strips being used to modify behaviour can be effective. The Polonsky step-study (which was not included in the Cochrane review because the control group were prescribed strips with no specific education so it wasn't a strip/no strip trial)shows what can be done with fairly limited test prescription, structured testing and doctor involvement. Pragmatically, maybe the latter is important, persuade doctors that it isn't a bunch of maverick patients but something they could teach to their other patients Get them on your side.

For comparison, strips here are also limited. Strips for T2s, not on insulin are only prescribed in the context of self 'education'. There is now a maximum limit of 200 per year only to be prescribed in the context of self education.(no idea how that is implemented) The authorities were going to restrict them to max 1 a day for all (T1 and 2)but a media campaign forced them to change their minds.
As a T1, I am not prescribed unlimited strips either. I am prescribed 6 strips per day. The pharmacist interprets this as 200 per month. I am aware that some people in the UK and lots in the US would consider that a low amount .I sometimes use more, I used a lot particularly when I first started running long distances. If I run out I buy them for myself

 

[borofergie]

Talking of Dogs my mate mum has a Dog with DBs, it has 3 injections a dayand has to go Vets every month all paid for by the PDSA it gets better care than we do??? who'd be a dog ehhhhh.

Right. Where can I get myself a diabetic dog from?

 

[ShyGirl]

I'd like to know why some science bod can't come up with a cheap test strip. I was going to buy some but they cost £27!

 

[borofergie]

The evidence from the Cochrane review however, suggests that prescribing strips is not beneficial, except perhaps for those newly diagnosed .

The evidence suggested that SMBG is of limited clinical effectiveness in improving glycaemic control in people with T2DM on oral agents, or diet alone, and is therefore unlikely to be cost-effective. SMBG may lead to improved glycaemic control only in the context of appropriate education - both for patients and health-care professionals - on how to respond to the data, in terms of lifestyle and treatment adjustment. Also, SMBG may be more effective if patients are able to self-adjust drug treatment. Further research is required on the type of education and feedback that are most helpful, characteristics of patients benefiting most from SMBG, optimal timing and frequency of SMBG, and the circumstances under which SMBG causes anxiety and/or depression.

We are suggesting only prescribing strips in the context of appropriate education.

What sort of dietary advice and support were given on the trials included in the Cochrane Review? I'm pretty sure that "eat to the meter" doesn't work if your HCP is telling you to "eat starchy carbohydrated with every meal" and to get "half your calries from carbs".

 

[RoyG]

Talking of Dogs my mate mum has a Dog with DBs, it has 3 injections a dayand has to go Vets every month all paid for by the PDSA it gets better care than we do??? who'd be a dog ehhhhh.

Right. Where can I get myself a diabetic dog from?

Ahhh it don't get test strips, but it is on low carb diet meat and bit of veg, she cannot even give it dogy biscuits.

 

[))Denise((]

So if the dog is told to low carb, why aren't humans told this? Maybe we should go to the PDSA too?

 

[borofergie]

So if the dog is told to low carb, why aren't humans told this? Maybe we should go to the PDSA too?

+1

This is incredible news. Dogs get better dietary advice from the Vet then we do from the NHS!

 

[RoyG]

I'd like to know why some science bod can't come up with a cheap test strip. I was going to buy some but they cost £27!

That's what I paid on Saturday at Boots for mine because the ones the MIL gave me where 2 months out of date, I have got bottle of test fluid from Bayer today, and they are all within test range, so needn't have bought em, but I went all paranoid when I got a reading of 9 off one of them, but I have been told that they do throw up a dickey reading sometimes. I was inconsolable all the way home from Wigan thinking I could have bought 11/2 gallons of nitro fuel for my planes with that

 

[lucylocket61]

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.

 

[RoyG]

So if the dog is told to low carb, why aren't humans told this? Maybe we should go to the PDSA too?

I think the vets know more than the doctors and DSN do :crazy:

 

[ShyGirl]

:crazy:

 

[Defren]

I'd like to know why some science bod can't come up with a cheap test strip. I was going to buy some but they cost £27!

That's what I paid on Saturday at Boots for mine because the ones the MIL gave me where 2 months out of date, I have got bottle of test fluid from Bayer today, and they are all within test range, so needn't have bought em

I've used old strips before and they were fine so unless years out of date i'd not worry.

What is strange is that hospital doctors ask if i've been testing at home , my GP asked what my numbers were last week but i'm not allowed more than two boxes a year it seems .
Last week I went down to 2.9 and wouldn't have known if strips free but I don't think you can ignore the cost to the NHS as it's the reason why they won't change their policy.

They won't listen to research if the end product could bankrupt them so i'm not sure what the answer is but it's a shame no-one is asking the big companies why test strips are so expensive. I can't move for free offeres of meters , kits and charts so someone somewhere is making a lot of money.

If SD codefree can sell strips for between £4.99-£6.99 then how come the other company's strips are the scandalous price they are? I am T2 and I do get strips, but SD Codefree are not available on the NHS, and I had invested in my own meter, so I had to be given a new meter where the strips are near £30. I don't have to buy any strips, as all my tests are covered, but £30 for testing strips, what a bl**dy rip off!

 

[noblehead]

Talking of Dogs my mate mum has a Dog with DBs, it has 3 injections a dayand has to go Vets every month all paid for by the PDSA it gets better care than we do??? who'd be a dog ehhhhh.

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.