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Something MUST be done!!!!

Re: Something SHOULD be done (let's try again)

Totally agree with you desidiabulum - as I did with your first post. I paricularly agree with your comment about setting our sights "low and pragmatic " I really don't see it getting off the ground otherwise.

Thank you for including me in your list of "luminaries". I am not sure I merit it but I suppose my experience is a little different to that of the others on your list . I certainly would join you in paying tribute to their efforts with the newly diagnosed.

I believe I am also quite unbiased but whether the problems with my vision would prevent me being of much help I don't know ,although of course, I would do anyhing I could to help.

I know you say that you have litle free time but you would appear to be the ideal co-ordinaor or "chairperson "' Not merely because it was your idea but because you obviously have the ability to remain focused which I think would be the essential requirement for taking your idea forward.
 
Re: Something SHOULD be done (let's try again)

Just some thoughts that I feel that should be kept in mind...

Desidiabulum is right keep 'dietary' advice completely separate... The nearest you should get to this, is 'lifestyle' changes as by saying this you'll giving a positive rather than a knee jerking reaction of 'you what' :shock:

You really need to turn Joe's Public attention away from a stereo-typical imagine and lay the blame at the door of the government and the lack of PCT to uphold their legal obligation of NICE guidelines... (NICE do say, that T2 should have access to test strips to manage their diabetes when appropriate)

Also when it comes to dietary advise etc, the government has very little power over this, it's 'eat healthy' campaign is totally based on what the medic's said! So it's a case you've got to tackle the medic's first before the government because a MP will only take up something if there's a possible winning vote in it for them!

Actually 2 previous members rallied up petitions of their own, neither of the petitions did well at all, I think only one actually got anywhere near the mark needed for consideration, and one of the petitions was running for 18 months! both petitions were asking for both test strips and changes from currant dietary advise to their dietary advice..
 
Ok so I was typing this reply when the other one locked and this re openned


Thanks desidiabulum your comments are appreciated. I've interspersed my views with your comments. We seem to be pretty close.


Agree 100%. The only other comment I'd make is making recommendations doesn't necessarily lead to HCP's adopting them. So for example if you do read the UK 2012 position statement it does advocate that carbs / gi are very important (in a meely mouthed kind of way) yet we still see those rubbish diet sheets given out by various PCT's advocating their death messages. That's down to this "mustn't offend the poor patient attitude" which needs to be attacked somehow.


Agree 100% which is why in the other thread I urged forum members to look at the bigger picture than just a re write of the new members text.


Agree 100% but that's the biggest one to defeat as you go up against ALL the vested interests imo. Prevention means persuading the masses to eat differently. A good start is eat less and exercise but that is the message that's told already and has absolutely no effect. Intervention is called for and intervention is what the UN is asking governments to do. Now imo the recent statins for all policy is our government trying to be interventionist. Its rubbish of course but no one is going to have the balls to tax Big Macs etc. or advocate a move to a different diet such as they are trying in Sweden. Won't happen and have no idea how you would get either public or government support for a real prevention campaign.


Correct it is mostly a T2 problem. I am not clear if the message is for both. That's really the big issue isn't it? At its simplest level people like Phoenix are 100% correct that as T1 or T1.5 they can do a low GI diet that is say greater than 33% carbs. I don't think any of us diet only T2's dispute that at all. The issue is as I've hoped I and others have shown is that for the majority of diet only T2's that diet is still a killer and needs to have its carbs reduced to a figure well under 33% but we still accept the GI / GL or portion control principles will or can apply once a basic carb reduction is in effect. So that's the basic dilemma if this is supposed to be a joint T1 / T2 endeavour. I know some T1's do VLC or low carb as well so some of them my well what to disagree with my statement that a 33% carb low GI diet is fine! The bottom line is as diet only T2's there is hardly any opposition to the low carb line but can't comment for the insulin using community of course.


Agree 100%. This is why I think the whole thing gets sold as a package deal. You create an option given to the newly diagnosed with a list of simple foodstuffs that includes ones that are deemed healthy and ones you should lower if your strips are telling you to. Simple as that. You monitor the person if they don't respond take the strips away. I would add "tell them the truth" to this option i.e. tell them if they don't restrict what they eat they will damage themselves and will therefore need stronger meds etc . I don't think this needs to be presented as an easy option because those like me who do it know it isn't easy at least when you start out. Motivate people by telling them the truth and let them get their respect back by allowing them to take responsibility for their condition.


Agree 100%. It's why I push Sweden and American. I don't think you can run ahead of what governments have currently accepted.


Would rather it was done in a more official way which is why I suggested Benedict chairs a committee much like he did for the strips petition I think? I still see this as a multi-level thing. At the forum, at the site and externally. For the first its our business but having someone like Benedict as a neutral would be good imo. For the second DCUK needs to buy in anyway and for the third having their endorsement would be very helpful. Where does Viv's parliament stuff fit in with priorities etc?

How to get the copies mass-circulated and used as a default guide to the newly diagnosed?


If the media savvy members who offered their time are up for it I'm all for letting them advise us along with any other professionals we can get our hands on.

Anyway I still think the next stage is to validate what we are saying with the forum membership which is why I asked that in an earlier post. How did the forum set up the test strips committee and how did those who did it know they had the backing of forum members?
 
borofergie said:
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.
Click to expand...

That would be quite interesting Stephen, to see if there are any T2 who can eat a large quantity of carbs and keep any kind of control. I am really quite carb intolerant and can only manage small amounts. Perhaps if we ask T2's what their upper limit of carbs is to maintain good control, that would help, if a draught of some sort is written?

My question, so I will start. To maintain good control, I have to ultra low carb at around 10-20g of carbs a day, so a Ketogenic diet that would be far too low for most people to maintain. My diet is possibly very close if not a Paleo diet.
 
Don't mind revealing me carbs Def (around 60g / day) but I don't think it will help the position statement. I think you have to look at it two ways as in what is said in the public position statement say given to a new member or the newly diagnosed and what is said in the backing documents that validate that position statement. So in the public statement I would rather the words carbohydrate, GI or any techie words were avoided. I like statements like the Swedes make in their position statement for example their moderate reduced carb regime says:

The diet consists of meat, fish, shellfish, eggs, vegetables, legumes and vegetable proteins and fats from olive oil and butter. The diet includes less sugar, bread, cereals, potatoes, root vegetables and rice than a traditional diabetes diet.
Click to expand...

The keyword in the above is "less" as it's open to interpretation by the patient. "Less" is where "Eat to your meter" comes in as so long as "less" means less than 8 after two hours it means different things to different people. How you achieve "less" is also up to you. You could do it a more GI / GL route or a more LCHF route or through straight portion control. That's the power of "less"

In any backing documents you will need to give references and if it is going to sound a serious thing those references need to be pretty good so referencing ADA or NICE or specific studies etc. If they are not good it would totally invalidate it's power as a document that has any use externally to this forum imho.
 
I can only remember someone {might have been Grazer} posting that several members were working on a petition. That may well have been my own fault for failing to read posts as comprehensively as I do nowadays .
 
Unbeliever said:
I can onluy remeber someone {might have been Grazer} postig that several memebers were working on a peittion. That may well have been my own fault for failing to read posts as comprehensively as I do nowadays .
Click to expand...

There is already a petition running petitioning for the availability of test strips but sadly it has fewer than 4000 signatures and 100000 are needed to present a petition to downing street which is what made me post my last comment to this thread which seems to have upset a couple of people.

It may be worth looking at the statistics a little closer. 80% of diabetics are not reaching NICE recommendations, is a statement often posted here and elsewhere on the the internet which must mean that 20% are, thats half a million diabetics who are apparently eating carbs as they have probably never heard of a LC diet and are all just merrily getting on with it presumably by just not over doing things. My sister is T2 and has an hba1c in the 5's and eats a healthy balanced diet that includes carbs, my wifes step mother the same and she is in her 70's and has been diabetic for many years, she is not obese and again eats a healthy balanced diet that includes carbs. Could it be that many of the 80% are just in denial and carrying on as they have all their lives eating huge portions of carbs with every meal and carby snacks and sugary drinks between meals? Will any advice help change their eating habits?

xyzzy has said a few times that talk of cpd (carbs per day) or lcd's as such are best avoided in any attempt to change things but still some members keep bringing it up. I expect I will be called a troll now for even mentioning it :lol: Eat to your meter is a great mantra which means exactly that and if you can eat 200g of carbs a day and still consistently stay in the 5% club then who is to say that person is wrong? No if everyone actually did eat to their meters it would solve all the NHS's diabetic problems however as someone has already pointed out some people will never change their attitudes to eating and only when overeating is seen as an eating disorder in its own right will the 80% perhaps receive proper help in changing their diets/lifestyle.
 
Defren and Stephen asked for examples of people successfully eating higher carb diets, I have sent a pm with a recent thread from a forum elsewhere.
 

:thumbup:

No-one is saying that's wrong. That's the whole point of "eating to the meter", it allows you to find the level of carbohydrate intake (or quality) that suits your metabolism. It's what Grazer has done @150g a day and every one here applauds him. Anyone that criticises anyone elses (successful) diet is pretty dumb in my opinion.

I'd applaud someone who managed to get good control on the DUK recommended 300g or more of carbs a day. The point most of us are trying to make that (even though it might work for some people), "half of your calories from carbohydrates" is not going to be a great place to start.

And of course you're exactly right that some people will never be able to change their eating habits no matter what the consequences. The trouble is that the current DUK and NHS advice gives those people a justifiaction (or an excuse) for not changing their diets.
 
We could ask the Public Accounts Committee to take evidence from people who are diabetics, trying to get hold of individuals who have good control and those who do not, and not drawing them exclusively from Diabetes UK.

What I would like to say to that Committee is that:


there are people controlling their diabetes very well by non-NHS methods;

that most of these people are well-educated (often self-educated) about their diabetes; and

that most of these people realise the importance of self-testing to monitor their blood glucose levels as the first tool to achieving that education and control.

that HCPs should be better educated about diabetes, and educated in how to educate;

that a 6-month trial run to see if self-testing is going to be helpful to each individual should be offered to every newly-diagnosed non-insulin user; if not, cease supplying strips; if yes, keep supplying strips.

that there should not be a blanket-ban on test strips for non-insulin users across entire PCTs (13 at least, at present).

Education and good control in the early stages of diabetes will lead to fewer expensive complications/interventions in the future.

There will always be those who deny their condition, but I believe that very many more people could achieve good control if only they were taught how to do it, and could see for themselves how well their efforts were working.


I am going to contact the Public Accounts Committee members anyway, as a private individual, and it will probably be along the lines of what I've written above. Any comments would be appreciated; I'm sure it needs working on!

Viv 8)
 
That all sounds very well put Viv .. if are able to pm contact details for the committee I will also send something (not identical obviously).
 

Sid on a personal level - a lady I asked you to help me with a while back just got her first ever sub 6% HbA1c. She has also lost a great deal of weight as is really happy. She took and used your portion control advise to great effect within the context of roughly halving her carb intake. So she and I would like to say thanks. Again a positive message back from her doctors even after she specifically told him about the low carb bit. Like many seem to be reporting recently she got back a "keep doing what you're doing" as it's obviously working response.

I agree with you that mentioning grams per day is not going to get us very far which is why, as you say, I keep saying we should avoid it. I accept on a case by case basis that there is a wide range of carbs per day values that apply so some people can eat loads more than others and still keep safe. I would just hope that you accept a lot of us simply can't eat loads and keep safe. I look at it this way. Each individual has some personal grams per day value that will keep them inside safe levels. That's the important value if someone then wants to do a lot less that is a personal choice but isn't strictly what the "Eat to your meter" message is about. The "Eat to your meter" message is about the safe level and although you may choose to measure that safe level as grams per day you a can just as easily work that safe level out via a portion control or GI / GL method. It should be whatever method helps the individual keep safe.

On the 75% don't meet the 7.5% HbA1c target. I think I need to explain my position on that a bit more. I don't push that statistic as a means of pushing a specific dietary recommendation but more as means of showing that change is needed. It's what I call "The failing NHS" which I know is quite an inflammatory statement to some but I hope you get the point that like the OP says "Something MUST be done". It is the same message without being as provocative as me

It would be nice to see behind that figure so for example out of the 75% how many are T1's and how many are T2's. Given that there are a lot more T2's than T1's I would guess the majority of that 75% are T2's. Yes I agree of the 25% who do achieve sub 7.5% very few will have come across a LC diet. I will make one further comment about that 25% who are successful. It would be nice to see how many out of that 25% are being successful by diet only as I'm sure we would both agree that is the most successful long term approach in terms of halting the progressive nature and more obvious things like weight loss and less CVD etc. So I would be concerned that if that 25% are having to take a load of meds to keep sub 7.5% then doesn't it mean that in the end many of them fall into the "diabetes is rapidly progressive" trap? Overtime they increasingly have to take more meds and then onto insulin. I'm not saying that happens to everyone as you are obviously someone who disproves what I have just said happens in a 100% of cases but I think its worth considering how even that 25% success rate is being achieved.

Although a very sad thing I see "eat to your meter" as more relevant to future newly diagnosed people anyway. Presenting that "eat to your meter" way as an option to the newly diagnosed is where it would be most effective and have the most impact. We know that from the newly diagnosed who turn up here me included.

In my mind "eat to your meter" is far more to do with issues such as education, being truthful to the patient, gaining control and self respect, personal and social responsibility than grams per day of carbs. Cutting and counting carbs or GI or portion control are just a range of tools you give people the choice to use within that "eat to your meter" framework. I use cutting carbs in my newly diagnosed speil because it worked for me. I say "halve" your carbs as I think that encompasses both a cut your grams per day AND a portion control approach. I say simplistically "swap to brown..." as recognition of GI / GL.

Sid would really like to hear your considered view on this some more.
 
Unbeliever said:
I can onluy remeber someone {might have been Grazer} postig that several memebers were working on a peittion. That may well have been my own fault for failing to read posts as comprehensively as I do nowadays .
Click to expand...

You're right unbeliever; that was the e-petition for testing strips. To answer Xyzzy's query, the way this was set up was that Benedict (admin) chaired a working party and invited various members to join it. Those members were selected from across a range of "types" (diabetic and diet type it seemed). Those people worked by email to come up with an e petition. As an e petition, it could not cover the level of detail being discussed here; it had to be very short and to the point to be accepted. Yes, it only collected 4,000 signatures, but that's not negligible considering "another forum's" attempt led by Ken attracted double figures only. And at least an effort was made rather than just moaning about a lack of testing and doing nothing.
"Approval" wasn't achieved by inviting comments and input from the forum as a whole. if you do that, you might as well have had a whole-forum working party in the first place, and nothing would be achieved. We've all probably seen things designed by over-large committee. After it was drafted, I think Benedict aired it to the forum to see if there were any major problems people had with it as a method of "approval". It was then published.
A similar working party could be set up by benedict for this if people wanted. The key to final approval would be ensuring the people on the work group were a fair cross-section of views from reasonable people on this forum. As diet is a pretty key issue, it would need to include representation from the low carb and higher carb community to achieve this. After a draft document was prepared, it could again be aired for any major issues; I would warn though that if, when aired, everyone tried to get there pet word/issue in, we'd end up with a bnoat with one oar and three rudders. It would need to be aired for "major issues", with Benedict being judge and amender.
It would also be key to define clearly EXACTLY what is trying to be achieved in the first place.
Just my thoughts
 

Viv agree with all your points in principle, just a few comments...

"there are people controlling their diabetes very well by non-NHS methods; " - think you would need to expand on that and maybe explain they are using methods increasingly advocated in other Western health services. You have to give them some evidence base that isn't purely anecdotal. You could also point out some leading UK diabetic centres are also beginning to take those non-NHS methods seriously.

"that most of these people are well-educated (often self-educated) about their diabetes;" - a simple table showing a list of people (Mr X from Blahtown) with at diagnosis and latest hBA1c results plus the meds they take would be an eye opener for many I suspect.

"that a 6-month trial run to see if self-testing is going to be helpful to each individual should be offered to every newly-diagnosed non-insulin user; if not, cease supplying strips; if yes, keep supplying strips. " - personally I think six months is too long imho. 3 months is enough and would coincide with a review of hBA1c. Maybe mention the cost of strips would lessen considerably if the NHS prescribed something like the SDCodefree for T2's.

"Education and good control in the early stages of diabetes will lead to fewer expensive complications/interventions in the future." - Yes but that education should not be judgemental but SHOULD be truthful in terms of what safe levels are and why the person needs to achieve them. The lack of truth (as I call it) by HCP's is a major contributor to complications / interventions and cost.
 
Quick note re public accounts committee meeting:
The 'witnesses' they will be taking testimony from are:

Baroness Young of Old Scone, Chief Executive, Diabetes UK (at 4.00pm)
Sir David Nicholson KCB CBE, Chief Executive of the NHS in England,
Una O'Brien, Permanent Secretary, Department of Health,
Sir Bruce Keogh, NHS Medical Director for England

Quite possibly none of them actual diabetics. I would flag that as users we are keenly aware of WASTE in the way things operate (duplicated retinopathy tests is my particular bugbear) -- that there are SAVINGS to be made in running things orchestrated more around effective and properly informed self-monitoring
 
As I said earlier in the thread any proposal/statement submitted should avoid any mention of grams per day and 'Eat to Your Meter and Carb Control' should be particularly emphasized.

What is important above anything else is that any submission represents the views and opinions of the majority and not the minority, on this forum we know carb control works well and we all in one way or another exercise some caution....whether someone is on a moderate carb diet down to those on VLC, pushing a particular view or diet which isn't representative of the majority would only hinder any attempt at change.

Perhaps canvasing beyond this forum and getting the views of diabetics across the board might be a good idea first, yes it would be time-consuming but it would carry more weight in any proposal/statement put forward.
 
It would be nice to see behind that figure so for example out of the 75% how many are T1's and how many are T2's. Given that there are a lot more T2's than T1's I would guess the majority of that 75% are T2's.
Click to expand...

There are great differences between the percentage s of T1s and T2s that reach the target .(figures for England
HbA1c Measurements are recorded 2009-10 for:
85.8 per cent of those with Type 1 diabetes
91.0 per cent of those with Type 2 diabetes
≤ 7.5 per cent (59mmol/mol) target was achieved in 66.5 per cent of the measurements from people with Type 2 diabete
≤ 7.5 per cent (59mmol/mol) target was achieved in 28.2 per cent of the measurements from people with Type 1 diabetes
therefore:
60.5% of people with T2 are known to 'achieve the target
24.2% of people with T1 are known to achieve the target.

In T2
People who achieved the target were:
older
53.4 per cent age <55 years
– 74.4 per cent >70 years

less likely to suffer social deprivation
Least deprived (Q1) 69.6 per cent
Most deprived (Q5) 63.1 per cent

less likely to be obese
73.4 per cent achieved target when BMI was 18.5 - 24.9
58.7 per cent achieved target when BMI was ≥ 40.

less likely to be Black or Asian
– White 68.3 per cent
– Asian 56.9 per cent
– Black 60.9 per cent
– Other 64.8 per cent

Similar factors come into play with T1 but the figures are more stark. (especially for age, social deprivation and ethnicity)
http://www.ic.nhs.uk/webfiles/Services/ ... 9_2010.pdf
 
Sid Bonkers said:
only when overeating is seen as an eating disorder in its own right will the 80% perhaps receive proper help in changing their diets/lifestyle.
Click to expand...

Sorry meant to comment on that. Again I agree Sid. I think Grazer points out the same thing. Regardless of if you believe the UK 50% (275g) carb diet is healthy or not at diagnosis loads of people are eating far more than 275g anyway.

So you CAN look at it that the national 50% (33% starchy carb) recommended diet is perfectly healthy if the population as a whole followed it. In my mind though that may be true but it misses the point and the problem.

Lets take someone who is diagnosed T2 and was eating well above the 275g RDA amount. Now what's told to a lot of them IS you eat too much, the national dietary guidelines say 275g so go eat that and all will be fine. That is the problem as 275g is at the extreme end of T2D tolerance. It may be a healthy diet for non diabetics but it certainly isn't for the vast majority of T2's is it?

Surely Sid this is why a statement like ...

The diet consists of meat, fish, shellfish, eggs, vegetables, legumes and vegetable proteins and fats from olive oil and butter. The diet includes less sugar, bread, cereals, potatoes, root vegetables and rice than a traditional diabetes diet.
Click to expand...

...is so powerful as it allows YOU to quite happily interpret "less" to mean 200g / day because you find you can do that amount yet it allows me to interpret "less" to mean 60g / day as that's what I can do and it states what foods you should be looking to reduce to make "less" work for you. Either you :lol: or me might at some stage go well I want to eat 10g a day because I feel that's even better but then that's a personal choice of how we want to control and something no one else should criticise. What we should both criticise is the system that doesn't allow us to make the informed choices to start with.

So all we should both be saying is that there needs to be a distinction drawn between what is a good dietary regime for non diabetics and what is a good diet for diabetics. I think that was the position prior to the 1980's.
 

Hmmm well that told me! Totally the other way round. :lol:

So you can look at that doc and see two thirds of T2's meet the 7.5% target whereas only around a quarter of T1's do. So what am I missing here? The obvious long term message is on the T2 front prevention should be emphasised. Can't comment on the T1 figures other than to say it looks dreadful.

What about the issue I raised earlier? Is there data anywhere that shows how those people are achieving getting sub 7.5% hBA1c's (meds etc.) and how long survival rates are etc? Without wishing to excuse my proven mistaken belief it would seem there is still a real difference between getting someone to have say a 6% hBA1c and them surviving for just 10 years and another person getting the same 6% HbA1c but because of a different approach surviving far longer. I think this is kind of what that Danish Steno research was attempting to show that I posted up the other week. By aggressively intervening you can make a difference. I think by aggressively intervening with "eat to your meter" we can make more of a difference. For example if you look in the doc at the Welsh results at first glance there is very little difference in obesity levels across HbA1c bands yet obesity would obviously be a strong predictor of lifespan simply from the CVD perspective.

Another conclusion after looking at the doc is from a campaign viewpoint the cost reduction angle to the NHS of "eat to your meter" becomes by far the most important aspect to push as I would guess.
 


I wasn't looking at the question I posed as being a mission statement. More an idea of what carbs, non insulin dependent diabetics could tolerate, to perhaps give a percentage when some kind of document is drawn up. On a personal level, as I said to Phoenix via PM, I would like to meet someone who can tolerate higher carbs, to find out the route they took to get to that point. Phoenix kindly showed me a case of a T2 who does appear to have quite a carb heavy diet, however he is not on this forum, so one can't ask anything of him. Yes, this is my curiosity, but there again, information of that sort would perhaps be useful.

I won't get into the LC, ULC, LCHF, GI, portion control etc debate, as it just descends into all out war. But I do strongly believe that the dietary advice given to all diabetics from the majority of HCP is at best seriously lacking. I will repeat what I have said before, the message seems clear enough to me, if we can show the NHS that their dietary advice is costing millions of pounds in complications, and medication, and by adopting a modified view now, then money could well be saved long term.

I will broach the subject of meters and strips. The manta many across the board use is 'eat to your meter'. I wholeheartedly agree with this. However, if newly diagnosed diabetics are not given meter's and strips, then how do they do this? Yes, some of us can afford to invest in our own, and the strips, others cannot. It is only with a long term vision can the NHS hope to save money. Giving newly diagnosed diabetics, of any type a meter, and the education to use one, is in my view the only way. Speculate to accumulate! Even if this service was only available say for six months post diagnosis, a LOT can be learned in that time.
 
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