Reading this forum both fills me with admiration for the time, tact and care which laypeople devote to advising and encouraging fellow-diabetics, and with absolute horror at the appalling misinformation that is still peddled by so many healthcare professionals to the newly diagnosed. I initially thought that such stories were of old outdated medics with silly ideas that would soon wither away, but every indication is that things are if anything getting even worse. There is an obvious rationale to the e-petition for test-strips for T2s, but even if it were to succeed (which I strongly doubt) this would be of no use if diabetics are still being given such bad and misleading advice. The basic advice about diet and sugar levels that the forum moderator gives to newbies is not rocket science – it is clear, straightforward, uncontroversial. Should we really be campaigning to get this information on a single piece of paper, endorsed by diabetes.uk, put into the hands of every GPs practice and every diabetic nurse in the country, to be given to every newly diagnosed diabetic, rather than their wasting time and money on education courses that are mostly useless and often harmful? That way Grazer and co can spend their time offering sage advice on particular problems, rather than having to provide basic diabetic advice to the country’s entire ill-informed diabetic community one by one. The forum has a splendid record of individual victories, but the towering wave of uncontrolled diabetes is not going to be reversed this way. Diabetic complications will cost the country billions, prevention using test strips would cost a tidy though relatively small sum, but basic advice costs nothing as long as it is properly delivered, and diabetics are dying of ignorance. Any ideas for how we could campaign to get the information delivered?
Something MUST be done!!!!
- Thread starter desidiabulum
- Start Date
I have ofen thought the same thing. That advice is the key and the fact it would cost so little and save so much is likely to be ts selling point.
Perhaps attracting the atention and assistance of certain popular newspapers and having the advice published or even aproaching
television producers -those invlved with relevant issues ,of course. At the same time sending a copy to he Health Secretary explaininfg our intentions. Best never to take politicians by surprise. Give them time to take advice and absorb the idea that this will save money and ,incidentally , lives. Mentioning the press will probably mean the letter will not be relegated to the metal filing basket under the desk. Does anyone know a young con-Dem anxious to make a name for themselves.?
Well said Desidiabulum. I am sure everyone here will agree with you.
t is very frustrating to know so many people could be helped so easily but that it is so difficult to reach them.
Perhaps attracting the atention and assistance of certain popular newspapers and having the advice published or even aproaching
television producers -those invlved with relevant issues ,of course. At the same time sending a copy to he Health Secretary explaininfg our intentions. Best never to take politicians by surprise. Give them time to take advice and absorb the idea that this will save money and ,incidentally , lives. Mentioning the press will probably mean the letter will not be relegated to the metal filing basket under the desk. Does anyone know a young con-Dem anxious to make a name for themselves.?
Well said Desidiabulum. I am sure everyone here will agree with you.
t is very frustrating to know so many people could be helped so easily but that it is so difficult to reach them.
Thanks Unbeliever. I'm sure you're right that politics is the way to go, and you've actually given me a very good idea about how to go about it. I don't have the expertise of others on the forum, and I can't get my sugars down the way that the zealots manage, but I will try to help by doing some backroom campaigning and see what can be done. More anon.
If it means an En-masse of us members,protesting at whitehall for the attention of Andrew Lansley,to get our message across,then count me in!
Alternatively, one of us could just turn up at 3.15 pm at Room 15, Palace of Westminster on 12 June when a Commons Public Accounts Select Committee is discussing 'Management of adult diabetes in the NHS'....
borofergie
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Not that I'm suggesting anything subversive, but this event would be a great place to try and get the "Eat to the Meter" message out:
http://www.diabetes.org.uk/thebigevent
http://www.diabetes.org.uk/thebigevent
I think the Eat to the Meter message is probably the strongest - or perhaps just 7.8 printed everywhere. I believe in low carbing but it sounds to an outsider like a fad diet.
To be honest - if I wanted to point a diabetic to an alternative source of info to DIEabetesUK it would have to be this site - there's currently nothing stronger that I've seen and I can't see that a leaflet, website, brochure etc is going to be stronger.
To be honest - if I wanted to point a diabetic to an alternative source of info to DIEabetesUK it would have to be this site - there's currently nothing stronger that I've seen and I can't see that a leaflet, website, brochure etc is going to be stronger.
If you need another body, you can count me in. Not sure what I could do, but I will do what I can.
xyzzy
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Well been out and just got in to see this. Agree with everything that's written in "feory". When I've thought about this my personal preference has always been to push "eat to your meter" ahead of any dietary recommendations. To me how you end up achieving "eat to your meter" is entirely a personal preference so for those like borofergie, librarisising, viv and mrs xyzzy its vlc, for Phoenix and Catherine Cherub its a more GI thing, for Sid its portion control, others it's the Newcastle thing and Grazer does his grass. For me the fundamental thing is the levels themselves more than any particular "diet" so I'm happy. As far as I can see each person makes a style choice out of personal preference and so long as we respect each other choices there shouldn't be an issue. The only "rule" each way has to comply to is the "eat to your meter" and be safe under 8 (7.8 or 8.5 don't care) after two hours.
Like swimmer I have never liked the term low carbing not just because it sounds like a fad diet but that like terms such as "GI" or "grams" or "BG" or even "carbohydrate" are likely to be pretty meaningless to a new member. Statements like "Don't eat a lot of rice", "Eat more veg", "Get a meter and test" etc. are far more useful. I think my latest newbie message just mentions one number "8" and tries to use the least diabetic jargon it can in its descriptions of what someone should do.
So what follows is my T2 view. I have no idea if the same message would apply for T1'sand T1.5's
My ultimate aim as a bit of an evangelist would be to see the adoption of a position statement that would emphasise a patient centred approach to management. Currently this is supoosed to happen anyway but in reality most patients only get to choose from a range of perceived valid options as presented by their gp or nurse. Critically I would like a new option to be added which would effectively be our position statement i.e some simple message that the patient might like to try a regime of "eat to your meter" Then under that "eat to your meter" heading some statements as to how best to achieve it in plain simple English. The wording of those statements would then implicitly impart the low carb and low gl/gi message without the reader having to know anything technical.
So at the top level i.e the diagnosing gp would see our position statement as an option to inform the newly diagnosed diabetic of.
For this forum it becomes the de-facto position statement of the forum membership and would be what new members got.
For this site I would personally like to see it become the de-facto position of the site as well so it would take priority over all other options and diets current presented. I can see the owners may want to have a say in that though! The way the main dietary pages of this site are presented always makes me smile. If you've ever looked it does present a range of diets and what each one means. However it does still to my mind, however apologetically, give preference to the NHS DUK position. I think it should have the same guts and conviction its forum members have. Given a low carb / low gi message is pushed as a perfectly good and the increasingly preferable method in lots of countries this site can easily justify advocating that same strength of message. To me it then puts pressure on DUK to adopt a similar stance or include our "option" itself.
Finally if we are serious about this then we should present Benedict with the idea. I would suggest a committee is formed that he would chair that has a range of members who so long as they support the basic "Eat to your meter" line can bring their own expertise to. Their objective should be to come up with the position statement. When its agreed the forum members should decide if it should be adopted as the statement given to new members and if so the statement should be taken to the site owners by Benedict and the committee to try and persuade them to adopt it at the site level.
Like swimmer I have never liked the term low carbing not just because it sounds like a fad diet but that like terms such as "GI" or "grams" or "BG" or even "carbohydrate" are likely to be pretty meaningless to a new member. Statements like "Don't eat a lot of rice", "Eat more veg", "Get a meter and test" etc. are far more useful. I think my latest newbie message just mentions one number "8" and tries to use the least diabetic jargon it can in its descriptions of what someone should do.
So what follows is my T2 view. I have no idea if the same message would apply for T1'sand T1.5's
My ultimate aim as a bit of an evangelist would be to see the adoption of a position statement that would emphasise a patient centred approach to management. Currently this is supoosed to happen anyway but in reality most patients only get to choose from a range of perceived valid options as presented by their gp or nurse. Critically I would like a new option to be added which would effectively be our position statement i.e some simple message that the patient might like to try a regime of "eat to your meter" Then under that "eat to your meter" heading some statements as to how best to achieve it in plain simple English. The wording of those statements would then implicitly impart the low carb and low gl/gi message without the reader having to know anything technical.
So at the top level i.e the diagnosing gp would see our position statement as an option to inform the newly diagnosed diabetic of.
For this forum it becomes the de-facto position statement of the forum membership and would be what new members got.
For this site I would personally like to see it become the de-facto position of the site as well so it would take priority over all other options and diets current presented. I can see the owners may want to have a say in that though! The way the main dietary pages of this site are presented always makes me smile. If you've ever looked it does present a range of diets and what each one means. However it does still to my mind, however apologetically, give preference to the NHS DUK position. I think it should have the same guts and conviction its forum members have. Given a low carb / low gi message is pushed as a perfectly good and the increasingly preferable method in lots of countries this site can easily justify advocating that same strength of message. To me it then puts pressure on DUK to adopt a similar stance or include our "option" itself.
Finally if we are serious about this then we should present Benedict with the idea. I would suggest a committee is formed that he would chair that has a range of members who so long as they support the basic "Eat to your meter" line can bring their own expertise to. Their objective should be to come up with the position statement. When its agreed the forum members should decide if it should be adopted as the statement given to new members and if so the statement should be taken to the site owners by Benedict and the committee to try and persuade them to adopt it at the site level.
If we want to reach a wider audience and get the politicians on side in the first instance i would suggest that "eat to your meter " while reflecting the views of almost everyone here would be counterproductive. it presupposes the exisence of a meter and obviously strips. Expense ! money! horrors!
In the first instance might it not be better to take a simple and inexpensive non-threatening idea siuch as reducing carbs so as not to frighten the horses? Include references to plaes where FREE advice may be had -such as this forum the while working on xyzzy's plan outlined above.
In the first instance might it not be better to take a simple and inexpensive non-threatening idea siuch as reducing carbs so as not to frighten the horses? Include references to plaes where FREE advice may be had -such as this forum the while working on xyzzy's plan outlined above.
I strongly believe in the "eat to your meter" mantra. Yes, cost is an issue, but it needs to be shown, and it can be shown, diabetics with good control save the NHS money in the long term. That for me is the biggest issue, making the NHS look to future savings and not to the money they have in the pot today.
I DO believe in low carb diets, I am not in any position to suggest what a 'low carb' diet is, as it means different things to different people. I, for example do not tolerate carbs well at all, so have to be ULC if I want my figures tight and to remain that way.
I do also have another mantra, secondary to the eat to your meter mantra, but to me, very important. People need to be warned about carbs, we all agree on that, how we implement it, is personal, but people need to be warned also about wheat. The carbs in wheat, wheat products and pre-packaged foods needs to be addressed.
Steve, I am interested in your committee idea, but what do you hope to achieve? Is it a policy change on this forum, or do you hope it will be more expansive that that? Places like DUK will always use the NHS dietary advice as mitigation for their own policy, how do you suppose we can change both the NHS and DUK? I accept if the NHS guidelines change, then DUK will follow the flock, but there is a fight to be had to effect change.
We are but a small group of diabetics, who have used our own methods to gain control, small fishes in a rather large pond. While many of us may be living proof of what we claim, like Professor Taylor and the Newcastle Diet, a bigger test group is needed is the usual cry. Those of us on the ND or who have done it, know it works, but the medical profession aren't listening - yet!
While as individual voices we would never be heard, my concern is, even as a group from this forum, we are too few to make a big enough noise.
I DO believe in low carb diets, I am not in any position to suggest what a 'low carb' diet is, as it means different things to different people. I, for example do not tolerate carbs well at all, so have to be ULC if I want my figures tight and to remain that way.
I do also have another mantra, secondary to the eat to your meter mantra, but to me, very important. People need to be warned about carbs, we all agree on that, how we implement it, is personal, but people need to be warned also about wheat. The carbs in wheat, wheat products and pre-packaged foods needs to be addressed.
Steve, I am interested in your committee idea, but what do you hope to achieve? Is it a policy change on this forum, or do you hope it will be more expansive that that? Places like DUK will always use the NHS dietary advice as mitigation for their own policy, how do you suppose we can change both the NHS and DUK? I accept if the NHS guidelines change, then DUK will follow the flock, but there is a fight to be had to effect change.
We are but a small group of diabetics, who have used our own methods to gain control, small fishes in a rather large pond. While many of us may be living proof of what we claim, like Professor Taylor and the Newcastle Diet, a bigger test group is needed is the usual cry. Those of us on the ND or who have done it, know it works, but the medical profession aren't listening - yet!
While as individual voices we would never be heard, my concern is, even as a group from this forum, we are too few to make a big enough noise.
xyzzy
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Defren said:
There are different levels to this.
At the lowest there is what we the forum membership recommend to new members
Next what the DCUK site recommends on its pages
Next the DUK charity
Next the NHS and GP's
Me I want to change them all...
My honest view is DUK is the biggest problem.
The GP's are easy just show them they will save money and have an easy life. Do that and they'll buy into anything. Bet you I could do 10 times the low carb conversion job on GP's and DSN's if you showed them it saved them dosh. As all T2 care is being handed to them in the govs shake up there will be no consultants "policing" against the cheap profit making low carbing evil gp's. The main thing there is to get things like the sdcodefree meter to be available on prescription so the gp's don't pay out a fortune on strips. Money talks...
Persuade the GP's and pressure is applied to the DUK charity top down.
A position statement for the DCUK site and new members of the forum is down to us and is one and the same thing. Like I said earlier a committee to work out that position statement seems to me a good idea. We are supposed to be adults so yes we have differing views on various things but they converge when we talk about eat to your meter so any differences shouldn't be insurmountable.
A position statement at the site level that directly challenges the DUK position puts pressure on DUK from the bottom up.
I like Dillingers idea's of "digital". A digital media campaign in association with the launch of a position statement sounds spot on. Perhaps the DCUK owners might want to consider funding or subsidising that.
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Eat to your meter is probably the strongest and most sensible argument you can put across, start to mention LCHF or any other diet that goes against the current thinking then the door will be slammed in your face, as xyzzy says earlier we all have different ways in which we achieve good blood glucose control with diabetes and no one method suits all. The emphasis along with 'Eat to your Meter' should be on carb control without stipulating a particular level, only then will you see People/Politicians/HCP's sit up and ponder about the current recommendations.
I would also like to lend a hand in whatever is suggested. You feel so helpless as one person. I was livid and so very angry when I read a member on here had lost a brother in law to diabetes, first having lost his limbs then his eyes, by following the NHS NICE guidlines. Its tragic and such a waste of resources especially when the education is now out there. Sadly the NHS is wearing blinkers and maybe its time now when we are facing an epidemic and its in the news that maybe we could go someway to taking them off.
While I understand xyzzy's implied point - that everyone concerned needs some financial incentive , including the sponsors of this forum , I can only see financial DISincentives for the most influential bodies -and I think they will think so too.
The process of handing over control of diabetes care to GP's has been going on for some years now. Running alongside has been
the phasing out of self testing supplies for T2s and even restrictions on strips for T1s. When i was diagnosed 5 years ago meters and strips were issued as a mater of course to everyone.
Not all Gps in every area suddenly issued a blanket ban. These patients are sill around. The plan was probably to minimise the cost of test meters and strips before the Gp's acquired complete control. To this end studies were done which apparently satisfied the powers that be that the cost of self -monioring was not justified by the results .
I do not believe that those holding the purse strings at any level are going to be easily persuaded to loosen them when the savings have only just been established. No one is going to be likely to even want to think long term at present.
They won't do it i n any area let alone that of health where it is going to take some years for the new system to settle down and where much "tweaking" be necessary
DUK will certainly have to follow where the NHS leads so it is the government we have to persuade. I think the OP had in mind some short, sharp , CHEAP, headline-grabbing "fix" Or so I understood it. I think this is the only realistic path to follow at presen.t.
Not everyone has computer access or wants to take an active part in their own healthcare or is even capable of so doing. Not everyone finds their way here.
As has already been pointed out we are a relatively small group. No doubt we are seen as dissidents which in fact , is what we are
in a sense. Money certainly does talk, sometimes it even roars. No harm at all in discussing a new position staement for his forum but
if we want to make a real and immediate difference we should offer the NHS -and therefiore DUK , a cheap and easy way out of their present predicament ie having to push dietary policies which most practicioners have to admit - if only to themselves- is not working and may be doing harm.. This can surely be achieved by just altering the advice to the newly diagnosed to include more options , including reducing carbs, not to push their present poisonous dietary advice but to leave that to the individual and to point patients to fora and self -help groups such as this. One small step.,,,,,,,
If people have longer term and grander ambitions , thats fine and I wish them every siuccess but things like self -testing could be mooted if we managed to make our voice heard initiallly, and to draw atention to the fact that there is an alternative view and that
NHS advice is not working and DUK do not have all the answers..
The process of handing over control of diabetes care to GP's has been going on for some years now. Running alongside has been
the phasing out of self testing supplies for T2s and even restrictions on strips for T1s. When i was diagnosed 5 years ago meters and strips were issued as a mater of course to everyone.
Not all Gps in every area suddenly issued a blanket ban. These patients are sill around. The plan was probably to minimise the cost of test meters and strips before the Gp's acquired complete control. To this end studies were done which apparently satisfied the powers that be that the cost of self -monioring was not justified by the results .
I do not believe that those holding the purse strings at any level are going to be easily persuaded to loosen them when the savings have only just been established. No one is going to be likely to even want to think long term at present.
They won't do it i n any area let alone that of health where it is going to take some years for the new system to settle down and where much "tweaking" be necessary
DUK will certainly have to follow where the NHS leads so it is the government we have to persuade. I think the OP had in mind some short, sharp , CHEAP, headline-grabbing "fix" Or so I understood it. I think this is the only realistic path to follow at presen.t.
Not everyone has computer access or wants to take an active part in their own healthcare or is even capable of so doing. Not everyone finds their way here.
As has already been pointed out we are a relatively small group. No doubt we are seen as dissidents which in fact , is what we are
in a sense. Money certainly does talk, sometimes it even roars. No harm at all in discussing a new position staement for his forum but
if we want to make a real and immediate difference we should offer the NHS -and therefiore DUK , a cheap and easy way out of their present predicament ie having to push dietary policies which most practicioners have to admit - if only to themselves- is not working and may be doing harm.. This can surely be achieved by just altering the advice to the newly diagnosed to include more options , including reducing carbs, not to push their present poisonous dietary advice but to leave that to the individual and to point patients to fora and self -help groups such as this. One small step.,,,,,,,
If people have longer term and grander ambitions , thats fine and I wish them every siuccess but things like self -testing could be mooted if we managed to make our voice heard initiallly, and to draw atention to the fact that there is an alternative view and that
NHS advice is not working and DUK do not have all the answers..
IanD
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I do hope that's wrong - DUK should be a lobby group in the interests of diabs, NOT a government voice.
Anyone near Hounslow - come along & support me May 29. I've been advertising these meetings for some time, but no-one else from the forum has come, & I've been advertising the forum to the group (50+) & no-one has joined (to my knowledge.)
IanD said:I will be speaking at this meeting, giving my experience with a low carb diet. The other speaker is from Diabetes UK. Will it be like an Agatha Christie novel, where she brings together people who have reason to murder each other.....?
The programme for the evening:
7.00pm Open for Tea and refreshments
7.25pm Diabetes UK talk
8.29pm Ian Day - Low carb diet
9.15pm Close
Venue:
Montague Public Hall, 30 Montague Road, Hounslow TW3 1LD
Montague Road is just off Hounslow High Street on the corner with Holy Trinity Church. The Hall is opposite Hounslow Police Station. There is ample free parking after 6.30pm in public car parks in Montague Road.
I look forward to seeing forum members there
Hi everyone I work in pr and communications and specialise in political media but working in the non profit sector now. Please count me in re planning a proper awareness campaign to ensure we get in front of the right decision makers and start moving towards better outcomes for all of us living with diabetes.
