borofergie
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mod edit: discuss the point not the person
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Something MUST be done!!!!
- Thread starter desidiabulum
- Start Date
lucylocket61
Expert
Isnt the problem Jopar highlights the fault of those allocating funds, not those of us (t1 and T2) who are struggling with this disease?
Yet another divisive piece of behaviour from those who refuse to expand the pot of money to cover those in need, this turning some of us on each other to grab what we can.
Yet we are trying to find a way to avoid complications, thus making the best use of the funding allocated by the PTB. :crazy:
Yet another divisive piece of behaviour from those who refuse to expand the pot of money to cover those in need, this turning some of us on each other to grab what we can.
Yet we are trying to find a way to avoid complications, thus making the best use of the funding allocated by the PTB. :crazy:
xyzzy
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Right lets try and move this on.
What I want to know from everyone who wants an opinion is how to proceed from here? How did you take the original testing petition forwards for example? That must have started in a thread like this? I do take onboard some aspect of what Sid said. How did you know at the time of doing the testing petition that you had the majority of members behind you?
As far as I can see this thread is proposing something which at present we are calling "Eat to your meter". It has something to do with recommending an extended range of dietary options with a self management framework that involves a strictly monitored testing regime so that strips don't get wasted or abused. All details to be discussed... Obviously the discussion is largely talking about a proposal for T2's. Are people ok with that.
The two priorities as I would see it are that something should be drawn up for Viv to take for her parliament thing. Also something gets drawn up as the forum memberships new position statement that gets given to new members. Are these the same things?
Secondary to that I would urge "the membership" to consider trying to get whatever position statement the forum members want to be adopted for the forum to also be take up by DCUK itself as I think that sends out a very powerful message as it would negate the "you're just a bunch of fanatics" criticism.
What I want to know from everyone who wants an opinion is how to proceed from here? How did you take the original testing petition forwards for example? That must have started in a thread like this? I do take onboard some aspect of what Sid said. How did you know at the time of doing the testing petition that you had the majority of members behind you?
As far as I can see this thread is proposing something which at present we are calling "Eat to your meter". It has something to do with recommending an extended range of dietary options with a self management framework that involves a strictly monitored testing regime so that strips don't get wasted or abused. All details to be discussed... Obviously the discussion is largely talking about a proposal for T2's. Are people ok with that.
The two priorities as I would see it are that something should be drawn up for Viv to take for her parliament thing. Also something gets drawn up as the forum memberships new position statement that gets given to new members. Are these the same things?
Secondary to that I would urge "the membership" to consider trying to get whatever position statement the forum members want to be adopted for the forum to also be take up by DCUK itself as I think that sends out a very powerful message as it would negate the "you're just a bunch of fanatics" criticism.
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A reminder what the Admin posted on the 4th May 2012:
Setting up an 'us against them' mentality
Sarcastic, inciteful or contentious comments which imply an 'us against them' situation amongst board members is not acceptable.
Ganging up
If you come into a discussion to either belittle or discredit someone, this is not acceptable
Setting up an 'us against them' mentality
Sarcastic, inciteful or contentious comments which imply an 'us against them' situation amongst board members is not acceptable.
Ganging up
If you come into a discussion to either belittle or discredit someone, this is not acceptable
phoenix
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I think Stephen you are becoming very reactive. I gave this article to show both the against which the authorities will quote and the pro from the Polonsky study. It was meant to be helpful.borofergie said:
You bring the 50% carbs into it , why? I can show you people who eat comparatively large quantities of appropriate carbs with good control but I thought that you were arguing that wasn't the point.
borofergie
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noblehead said:
+1. I'm glad you agree Nigel.
xyzzy
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Like I say lets try and move this on...
What I want to know from everyone who wants an opinion is how to proceed from here? How did you take the original testing petition forwards for example? That must have started in a thread like this? I do take onboard some aspect of what Sid said. How did you know at the time of doing the testing petition that you had the majority of members behind you?
As far as I can see this thread is proposing something which at present we are calling "Eat to your meter". It has something to do with recommending an extended range of dietary options with a self management framework that involves a strictly monitored testing regime so that strips don't get wasted or abused. All details to be discussed... Obviously the discussion is largely talking about a proposal for T2's. Are people ok with that.
The two priorities as I would see it are that something should be drawn up for Viv to take for her parliament thing. Also something gets drawn up as the forum memberships new position statement that gets given to new members. Are these the same things?
Secondary to that I would urge "the membership" to consider trying to get whatever position statement the forum members want to be adopted for the forum to also be take up by DCUK itself as I think that sends out a very powerful message as it would negate the "you're just a bunch of fanatics" criticism.
What I want to know from everyone who wants an opinion is how to proceed from here? How did you take the original testing petition forwards for example? That must have started in a thread like this? I do take onboard some aspect of what Sid said. How did you know at the time of doing the testing petition that you had the majority of members behind you?
As far as I can see this thread is proposing something which at present we are calling "Eat to your meter". It has something to do with recommending an extended range of dietary options with a self management framework that involves a strictly monitored testing regime so that strips don't get wasted or abused. All details to be discussed... Obviously the discussion is largely talking about a proposal for T2's. Are people ok with that.
The two priorities as I would see it are that something should be drawn up for Viv to take for her parliament thing. Also something gets drawn up as the forum memberships new position statement that gets given to new members. Are these the same things?
Secondary to that I would urge "the membership" to consider trying to get whatever position statement the forum members want to be adopted for the forum to also be take up by DCUK itself as I think that sends out a very powerful message as it would negate the "you're just a bunch of fanatics" criticism.
SweetHeart
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Today my husband was told that 'Once you're diagnosed diabetic, then it can't be removed from your medical records. Even if it was a mistake......' when asked to expand on this remark our DSN explained that you have to stay misdiagnosed as a diabetic because otherwise the surgery has to return the extra funding they got on diagnosis.
This is why there is so much money going from research and treatment. I think that's fraudulent ethics. It really gets up my nose when health centres/surgeries claim the extra funding and then don't use it for the patient for whom it was claimed, refusing meters, strips and other tests you might need when they are needed.
Ju
This is why there is so much money going from research and treatment. I think that's fraudulent ethics. It really gets up my nose when health centres/surgeries claim the extra funding and then don't use it for the patient for whom it was claimed, refusing meters, strips and other tests you might need when they are needed.
Ju
Paul1976
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I tried to explain the 'Eat to your meter' and reduce Carbs accordingly at the DESMOND course I attended-I was quietly told at the end of the first session that it would be best if I did not attend the 2nd session. :shh: :silent:
lucylocket61
Expert
Noblehead
If someone posts something antagonistic or insulting, I dont see how the offended people, regardless of how many of them there are, responding to express their hurt and upset, can be described as a gang.
A Gang is a group of people acting together to intimidate - in this context of being called bullies.
And we are not acting together, any of us. We are individuals expressing our feelings and thoughts individually. So calling people bullies for expressing their personal and legitimate complaints and thoughts is not, in my opinion, fair.
If someone posts something antagonistic or insulting, I dont see how the offended people, regardless of how many of them there are, responding to express their hurt and upset, can be described as a gang.
A Gang is a group of people acting together to intimidate - in this context of being called bullies.
And we are not acting together, any of us. We are individuals expressing our feelings and thoughts individually. So calling people bullies for expressing their personal and legitimate complaints and thoughts is not, in my opinion, fair.
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SweetHeart said:
If it were truly a mistake then they would be legally obliged to remove diabetes from your records surely, having it on your record can impact on life insurance etc.
jopar
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Lucylocket
Yes you are right about the need to empower the individual to make the management decisions for themselves not brow beat them into something they don't want to be doing...
If you take the members on here as being a bunch of proactive diabetic's when it comes to gaining and managing their condition, yet a lot of them actual struggle adapted to chances in diet, simple things like not eating chocolate and how to get through festive seasons without falling off the wagon or being tempted by goodies... So even if somebody really wants to change their diet for the better it's still difficult to achieve and in the main people have wobbles Just as Hana!
So if it's difficult for somebody who's up for the challenge of change, what about the person who's in denial or just doesn't want to change and this the type of person the HCP deals with the most! Every DSN, will be able to recant a story of the battle they had attempting to get their patient to curtail their eating habits! I would love to see some of the members attempt to tell a friend of mine about Carb reduction and what's best for T2 diabetes, believe me I tried once and never again, she controls her husbands medication overseeing some complex medical conditions (T2 is a steroid side effect) his various consultants will prescribe/adjust his medication, she then decides the actual dose her husband will receive ignoring the consultants! She's in battlement with our DSN (we have the same doctor) because who is the DSN to tell her that she needs to reduce her husbands carb intake! Believe me his dinner would feed both my husband and I, and me the next day!
On your other Note..
You say, that there's only 20 of you and the bandwagon will increase with time Sadly experience says otherwise!
Ever wondered where the new keen, motivated T2 disappears off to after a couple of weeks of a miracle turn around of their control following an low carb diet! I know you would like to think that they've been hounded off the forum, bullied and attacked etc... After all rumours say this is what happens, in fact only 2 to my knowledge only 2 extreme low carb advocates have been banned, they did take around 30 sockpuppets with them (sockpuppets is the term used for one member who uses multiply accounts to post under)! So what about the others, well one can only really guess, but they don't seem to pop up on other forums even those that are low carb specific!
So one can only assume that what happens is similar to other strict diet regimes in the weight loss world... The I'm fed up with the restrictions blah blah blah, so sod it I'm chucking it in!
Atkins and various other people have all promoted their diets as being the 'world' changing diet then when the initial flush is over... Then the blame the lack of continuous pick-up on various factors, such as the HCP's being bribed by the pharmaceuticals companies and food industry to promote in their favour... But the truth is more fundamental than that... Joe Bloggs either isn't interested or they can't maintain the motivation to stick to a very restrictive food type intake!
P.S
Stephen, Yes you'll right there is a troll on the forum, sadly you way off the mark suggesting that I'm the troll!
Yes you are right about the need to empower the individual to make the management decisions for themselves not brow beat them into something they don't want to be doing...
If you take the members on here as being a bunch of proactive diabetic's when it comes to gaining and managing their condition, yet a lot of them actual struggle adapted to chances in diet, simple things like not eating chocolate and how to get through festive seasons without falling off the wagon or being tempted by goodies... So even if somebody really wants to change their diet for the better it's still difficult to achieve and in the main people have wobbles Just as Hana!
So if it's difficult for somebody who's up for the challenge of change, what about the person who's in denial or just doesn't want to change and this the type of person the HCP deals with the most! Every DSN, will be able to recant a story of the battle they had attempting to get their patient to curtail their eating habits! I would love to see some of the members attempt to tell a friend of mine about Carb reduction and what's best for T2 diabetes, believe me I tried once and never again, she controls her husbands medication overseeing some complex medical conditions (T2 is a steroid side effect) his various consultants will prescribe/adjust his medication, she then decides the actual dose her husband will receive ignoring the consultants! She's in battlement with our DSN (we have the same doctor) because who is the DSN to tell her that she needs to reduce her husbands carb intake! Believe me his dinner would feed both my husband and I, and me the next day!
On your other Note..
You say, that there's only 20 of you and the bandwagon will increase with time Sadly experience says otherwise!
Ever wondered where the new keen, motivated T2 disappears off to after a couple of weeks of a miracle turn around of their control following an low carb diet! I know you would like to think that they've been hounded off the forum, bullied and attacked etc... After all rumours say this is what happens, in fact only 2 to my knowledge only 2 extreme low carb advocates have been banned, they did take around 30 sockpuppets with them (sockpuppets is the term used for one member who uses multiply accounts to post under)! So what about the others, well one can only really guess, but they don't seem to pop up on other forums even those that are low carb specific!
So one can only assume that what happens is similar to other strict diet regimes in the weight loss world... The I'm fed up with the restrictions blah blah blah, so sod it I'm chucking it in!
Atkins and various other people have all promoted their diets as being the 'world' changing diet then when the initial flush is over... Then the blame the lack of continuous pick-up on various factors, such as the HCP's being bribed by the pharmaceuticals companies and food industry to promote in their favour... But the truth is more fundamental than that... Joe Bloggs either isn't interested or they can't maintain the motivation to stick to a very restrictive food type intake!
P.S
Stephen, Yes you'll right there is a troll on the forum, sadly you way off the mark suggesting that I'm the troll!
noblehead said:
Oh I quite agree. Perhaps we should add flaiming and baiting as well? As we have seen before, threads with huge potential have been locked due to trolling behaviour, so surely that is something we as members here should also not take lightly?
It seems to me, this thread has the potential to become something very important to ALL diabetics, regardless of type or regime of control, but it will be locked and that chance lost. Perhaps all members of this community should stamp on behaviour likely to cause that to happen, by simply ignoring and reporting those who's apparent mission is to de-rail or stop debates and discussions they perhaps don't agree with?
borofergie
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phoenix said:
Not at all, I was responding to the point.
50% carbs by energy (which is much more than 50% by weight) is what DUK are pushing. It's the machine that we're raging against.
I'd love for you to show me some T2s who eat large quantities of carbs with good control, especially those that eat 50% by energy.
I have re-opened this thread now.
Can we please ensure that we stick to the forum rules and make sure that our posts are constructive.
Posts that do not contribute to the original topic, are non-constructive, discourteous or purposefully attempt to derail the thread WILL be deleted.
Can we please ensure that we stick to the forum rules and make sure that our posts are constructive.
Posts that do not contribute to the original topic, are non-constructive, discourteous or purposefully attempt to derail the thread WILL be deleted.
desidiabulum
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Something SHOULD be done (let's try again)
Hi everyone,
Sorry I haven't been in touch. One of life's little surprises knocked me out of action for a few days.
I can see that things got rather out of control -- never mind, but can we try again? A forum site is not the best way of doing this, but could we try to focus? Any unhelpful or distracting posts could we please just ignore them for the moment?
Many thanks to all who wrote in and offered help and thoughts.
I know that people disagree on some details, but there is a lot of common ground here. You are a highly talented group of people who are doing wonderful things for individual diabetics with problems - if you can keep focussed and work together you can achieve wonderful things for the diabetic community as a whole..
I won't comment on everything that's been said -- life is too short and my opinion has no special validity. But my basic thoughts are these:
1. The problem as I see it is not one of specific dietary programmes, but that among some excellent HCPs there is also a lot of frightening ignorance about the very basics of diabetes care -- what are safe readings, what you should avoid eating. That basic information is very simply and easily put on a single piece of paper. This forum is full of horror stories, and I could add a few of my own. No matter how good the GPs or DSN, if they are on holiday and someone else fills in, the result can be a disaster. Programmes of re-education are scandalously expensive -- putting an agreed piece of paper in everyone's hand isn't.
2. First diagnosis is the crucial moment when wrong information does most damage. The vast majority of diabetics DO NOT use the forum (do the maths, people! most users ever online 194; total numbers 37,850), many will not attend education classes or annual clinical reviews, and lack the time, willpower and courage to research their disease (many have very stressful lives -- who can blame them?)
3. If we want to change this situation we have to begin by setting our sights low and pragmatic, whatever our long-term aims. Government is TERRIFIED about the costs of the diabetic time bomb, and will want to put any funds into prevention, not self-management. Recent parliamentary debates on diabetes certainly indicate this.
4. T1s -- thank God -- have been mostly getting better treatment in recent years, and 3 cheers for DUK for helping to get that (whatever their other faults). The diabetes time bomb is T2, and that is where advice and support is most desperately lacking. But I assume what I am proposing is of use to both. For the record I have 'T1.5' on my profile because after 2 years of tests i am still a 'don't know' , though my family members are T1, and that includes children whom I care deeply about.
This would arguably suggest the following:
1. Demanding test strips indefinitely for all T2s is simply not going to work YET, and I think most of us agree . BUT any sensible management of diabetes needs self-monitoring, which i think we all also agree. Diabetes Uk will not support the e-petition, but its formal position is unambiguous in supporting self-monitoring and insisting that clinics must not have a blanket ban on provision of self-testing to T2s who are not on insulin. There is a basic inconsistency here that can be worked on in the long term. In the short term, universal circulation of a paper which explains how and why to test (amid basic dietary advice) helps to set an agenda, and should impel government and Diabetes UK in the medium term to sort out some sort of policy on testing for T2s (eg. perhaps every newly diagnosed T2 to be given a meter and strips for just 6 months, or maybe just 50 strips to start and proper advice, and then that's their lot-- not ideal, but better than being told not to test because it'll just make you go mad). Phoenix is exactly right to prime us on the counter-arguments.
2. On diet -- VLC may well work but would be a non-starter for the moment. If Diabetes UK is against, and government will mostly use them for advice, and obviously this issue prompts mild disagreement (!) among diabetics themselves, then there is a basic problem. But as even our VLC friends have noted, it doesn't need to be spelt out in so many words. Guidance urging moderate carbs and low GI should point people in the right direction for the moment (as long as there are none of the specific exhortations to eat carbs that feature on DUK). I'm sure broader attitudes will change, but that is a long haul struggle, and if we are addressing a more immediate problem we have to stay pragmatic.
Where to go from here?
1. An adaptation of Daisy''s instructions to newbies, with some pearls of wisdom from grazer, xyzzy, borofergie, phoenix, unbeliever and our other stars where appropriate, without explicit VLC language, and very simple prose, should be what's needed, and that will best be done via PM rather than a forum conversation. Could said luminaries get in touch via PM on this?
How to get the copies mass-circulated and used as a default guide to the newly diagnosed?
1. Undoubtedly the best way to succeed with all this would be via a newspaper campaign, which is the best way both to raise consciousness and also to force policy changes on government, but that would be a big ask (anyone know an editor of a national newspaper, preferably diabetic?). More media-savvy people than I have chimed in on this thread -- perhaps they could liaise via PM? 'Eat to your meter' might work as a campaign slogan if a newspaper was promoting it, but would look too expensive if it were pitched directly at politicians who are busy making £20bn of cuts in the NHS (as unbeliever pointed out)
2. But if a publicity campaign isn't an option, my own instincts are to work at persuading those who already have the power and authority to ensure its dissemination, rather than trying to challenge the authority itself (not as glorious, but maybe quicker and easier to change one MP's mind than a whole country's). The obvious people to target are politicians - a platform of free information as a solution may be useful. The problem partly is that they mostly take their cue from Diabetes UK, but there are some good people in that organization (the incoherence of some of their positions reflects an ongoing struggle). My own target is to try to sound out MPs, the relevant junior minister (a LibDem), and the all-party parliamentary group on diabetes (APPGD’s report ‘A Snapshot of Living with Diabetes in 2012’, is to be published this summer -- could be interesting). I also want to try to get a conversation going with Diabetes UK, perhaps through the CPD. I may get nowhere, but if there are any encouraging signs I would like to be able to ask some of you for input and advice (probably via p.m., if people are OK with this), and a body of case info would then be very useful where possible (this is where xyzzy's account of changed policy could be very helpful, as well as all overseas examples). Viv's idea of targetting members of the public accounts committee is excellent, but maybe for sake of coherence could we agree a text and then have a number of us write separately, tweaking the odd word?
Perhaps we need a division of labour?
I have no authority to be pushing any of this, I have precious little free time, and I have none of the expertise and experience of the Forum Giants - if others feel better equipped to orchestrate things, and have better ideas, I'll be happy to step aside.
Over to you!
Hi everyone,
Sorry I haven't been in touch. One of life's little surprises knocked me out of action for a few days.
I can see that things got rather out of control -- never mind, but can we try again? A forum site is not the best way of doing this, but could we try to focus? Any unhelpful or distracting posts could we please just ignore them for the moment?
Many thanks to all who wrote in and offered help and thoughts.
I know that people disagree on some details, but there is a lot of common ground here. You are a highly talented group of people who are doing wonderful things for individual diabetics with problems - if you can keep focussed and work together you can achieve wonderful things for the diabetic community as a whole..
I won't comment on everything that's been said -- life is too short and my opinion has no special validity. But my basic thoughts are these:
1. The problem as I see it is not one of specific dietary programmes, but that among some excellent HCPs there is also a lot of frightening ignorance about the very basics of diabetes care -- what are safe readings, what you should avoid eating. That basic information is very simply and easily put on a single piece of paper. This forum is full of horror stories, and I could add a few of my own. No matter how good the GPs or DSN, if they are on holiday and someone else fills in, the result can be a disaster. Programmes of re-education are scandalously expensive -- putting an agreed piece of paper in everyone's hand isn't.
2. First diagnosis is the crucial moment when wrong information does most damage. The vast majority of diabetics DO NOT use the forum (do the maths, people! most users ever online 194; total numbers 37,850), many will not attend education classes or annual clinical reviews, and lack the time, willpower and courage to research their disease (many have very stressful lives -- who can blame them?)
3. If we want to change this situation we have to begin by setting our sights low and pragmatic, whatever our long-term aims. Government is TERRIFIED about the costs of the diabetic time bomb, and will want to put any funds into prevention, not self-management. Recent parliamentary debates on diabetes certainly indicate this.
4. T1s -- thank God -- have been mostly getting better treatment in recent years, and 3 cheers for DUK for helping to get that (whatever their other faults). The diabetes time bomb is T2, and that is where advice and support is most desperately lacking. But I assume what I am proposing is of use to both. For the record I have 'T1.5' on my profile because after 2 years of tests i am still a 'don't know' , though my family members are T1, and that includes children whom I care deeply about.
This would arguably suggest the following:
1. Demanding test strips indefinitely for all T2s is simply not going to work YET, and I think most of us agree . BUT any sensible management of diabetes needs self-monitoring, which i think we all also agree. Diabetes Uk will not support the e-petition, but its formal position is unambiguous in supporting self-monitoring and insisting that clinics must not have a blanket ban on provision of self-testing to T2s who are not on insulin. There is a basic inconsistency here that can be worked on in the long term. In the short term, universal circulation of a paper which explains how and why to test (amid basic dietary advice) helps to set an agenda, and should impel government and Diabetes UK in the medium term to sort out some sort of policy on testing for T2s (eg. perhaps every newly diagnosed T2 to be given a meter and strips for just 6 months, or maybe just 50 strips to start and proper advice, and then that's their lot-- not ideal, but better than being told not to test because it'll just make you go mad). Phoenix is exactly right to prime us on the counter-arguments.
2. On diet -- VLC may well work but would be a non-starter for the moment. If Diabetes UK is against, and government will mostly use them for advice, and obviously this issue prompts mild disagreement (!) among diabetics themselves, then there is a basic problem. But as even our VLC friends have noted, it doesn't need to be spelt out in so many words. Guidance urging moderate carbs and low GI should point people in the right direction for the moment (as long as there are none of the specific exhortations to eat carbs that feature on DUK). I'm sure broader attitudes will change, but that is a long haul struggle, and if we are addressing a more immediate problem we have to stay pragmatic.
Where to go from here?
1. An adaptation of Daisy''s instructions to newbies, with some pearls of wisdom from grazer, xyzzy, borofergie, phoenix, unbeliever and our other stars where appropriate, without explicit VLC language, and very simple prose, should be what's needed, and that will best be done via PM rather than a forum conversation. Could said luminaries get in touch via PM on this?
How to get the copies mass-circulated and used as a default guide to the newly diagnosed?
1. Undoubtedly the best way to succeed with all this would be via a newspaper campaign, which is the best way both to raise consciousness and also to force policy changes on government, but that would be a big ask (anyone know an editor of a national newspaper, preferably diabetic?). More media-savvy people than I have chimed in on this thread -- perhaps they could liaise via PM? 'Eat to your meter' might work as a campaign slogan if a newspaper was promoting it, but would look too expensive if it were pitched directly at politicians who are busy making £20bn of cuts in the NHS (as unbeliever pointed out)
2. But if a publicity campaign isn't an option, my own instincts are to work at persuading those who already have the power and authority to ensure its dissemination, rather than trying to challenge the authority itself (not as glorious, but maybe quicker and easier to change one MP's mind than a whole country's). The obvious people to target are politicians - a platform of free information as a solution may be useful. The problem partly is that they mostly take their cue from Diabetes UK, but there are some good people in that organization (the incoherence of some of their positions reflects an ongoing struggle). My own target is to try to sound out MPs, the relevant junior minister (a LibDem), and the all-party parliamentary group on diabetes (APPGD’s report ‘A Snapshot of Living with Diabetes in 2012’, is to be published this summer -- could be interesting). I also want to try to get a conversation going with Diabetes UK, perhaps through the CPD. I may get nowhere, but if there are any encouraging signs I would like to be able to ask some of you for input and advice (probably via p.m., if people are OK with this), and a body of case info would then be very useful where possible (this is where xyzzy's account of changed policy could be very helpful, as well as all overseas examples). Viv's idea of targetting members of the public accounts committee is excellent, but maybe for sake of coherence could we agree a text and then have a number of us write separately, tweaking the odd word?
Perhaps we need a division of labour?
I have no authority to be pushing any of this, I have precious little free time, and I have none of the expertise and experience of the Forum Giants - if others feel better equipped to orchestrate things, and have better ideas, I'll be happy to step aside.
Over to you!
A
Anonymous
Guest
Re: Something SHOULD be done (let's try again)
Hello,
First of all, thanks for the very comprehensive post and for having the patience to try again. I have no experience of campaigning for anything and little enough experience of diabetes other than my own.
My opinion of Diabetes UK is probably too quickly formed and therefore unfair, but I have had little incentive to dig deeper. Unfortunately they are the de facto source for 'informed' input in to the political and media debate. We occasionally do hear an alternative viewpoint (such as Radio 4 recently) but it is rare.
So the only place I see a sensible (and therefore ethical) view put forward is here and more specifically in Daisy's welcome post. Would this be more effective as a piece of paper ? Only if a doctors surgery hands it to a newly diagnosed patient and I really can't see that happening. Once a newly diagnosed diabetic has found this site, it's not difficult to persuade them to try the approach that many of us use.
I'm not too keen on the PM idea, by the way. New members have restricted access to PMs don't they and for every person that posts with a problem there may be half a dozen guest users watching.
I don't think it's big headed to think that we make a real difference here - only because this forum has made a huge difference to my health and so it's fair to assume that those who I speak to will be similarly inspired.
But how you move that in to a political campaign, to change DUK's mind? I have no idea. I would like to see a formalisation of Daisy's information - but that could split the forum in to those who agree with carb control and those who don't. It could also drive a wedge between Type 1 and Type 2.
In terms of a message - I think Eat to your Meter has its merits, but I often say to new arrivals that they have probably been diabetic for years before diagnosis. Give this approach 4 weeks and see what happens. It's the results rather than the rhetoric that will convince people.
S
Hello,
First of all, thanks for the very comprehensive post and for having the patience to try again. I have no experience of campaigning for anything and little enough experience of diabetes other than my own.
My opinion of Diabetes UK is probably too quickly formed and therefore unfair, but I have had little incentive to dig deeper. Unfortunately they are the de facto source for 'informed' input in to the political and media debate. We occasionally do hear an alternative viewpoint (such as Radio 4 recently) but it is rare.
So the only place I see a sensible (and therefore ethical) view put forward is here and more specifically in Daisy's welcome post. Would this be more effective as a piece of paper ? Only if a doctors surgery hands it to a newly diagnosed patient and I really can't see that happening. Once a newly diagnosed diabetic has found this site, it's not difficult to persuade them to try the approach that many of us use.
I'm not too keen on the PM idea, by the way. New members have restricted access to PMs don't they and for every person that posts with a problem there may be half a dozen guest users watching.
I don't think it's big headed to think that we make a real difference here - only because this forum has made a huge difference to my health and so it's fair to assume that those who I speak to will be similarly inspired.
But how you move that in to a political campaign, to change DUK's mind? I have no idea. I would like to see a formalisation of Daisy's information - but that could split the forum in to those who agree with carb control and those who don't. It could also drive a wedge between Type 1 and Type 2.
In terms of a message - I think Eat to your Meter has its merits, but I often say to new arrivals that they have probably been diabetic for years before diagnosis. Give this approach 4 weeks and see what happens. It's the results rather than the rhetoric that will convince people.
S
