DO YOU WANT TO JOIN ME TO MAKE A CHANGE TO CURRENT GUIDELINES?

[Listlad]

Hi @Juicyj

i agree retraining is the key
and the point of the thread is HOW do we make that happen ?

But, this diabetic team you speak of.

For me mine was...The doc who gave me 5 minutes to tell me i was ill.
a 2nd visit to tell me i got worse (6 weeks HClf :***
the DN's who breezed through the tests (x2)
one telling me all was good carry on following the good advice..(had rejected it and went LCHF)
the other telling me how good everything is going..(again eatwell=Good )
throw in the eye test and that in over one year makes around two hours If that
add in the two day desmonds...nice enough but info was not what i needed re food,
though meeting fellow sufferers was nce.

GP's just don't have the time for us, not moaning just a fact.
online is where i learnt the most about my condition, and got the most help in managing it from fellow sufferers on here, not from my doctors surgery..that is sadly i acknowledge, the real world.
so lets embrace it as part of the solution.

( I do feel that type 1's Do have, as is appropriate a 'care Team'
But that types 2's (at least in my case) that 'team' just doesn't seem to be there. )


as for the other points made in thread

Not sure, but if we all know it's money, why any authority would sanction the libre,
regardless of how useful it might be.
Much more likely to go old (aka cheap) tech and run with meters IF we are lucky.

as a self funder i couldn't sanction the costs of a libre, why would the NHS absorb it.
red herring in my opinion..sorry.

as for meters, and training...mmhh

if only there was a site that instead of following outmoded food plans had a more open policy on LCHF and other alternatives, that ACTUALLY were proving great success, in the real world. ?

DCUK, should in my eyes, be the De Facto option for type 2's.
Duk just seems to recite the current dogma that those same HCP we all moan about, dish out

Solution to the 'training' ..mmhh..
perhaps let DN's do a basic one, then Put the training videos up on here, with a "how /when /why /what the numbers mean" in FULL View...that would be most useful, so newbies can review and recap at will..
(if desmonds was anything to go by, by the time the DN gets around to doing that training , most will be proficient by then )

give newly diagnosed the link to THAT DCUK page, as part of the care package.() off site training sorted
(Those interested come here anyway, lets just make it official )

DCUK make it an integral part of the forum, so those arriving for the first time are met with
Good Information and the beginnings of their support network.

So... back to the original issue
HOW do we make that happen and who do we need to target the message to.?

Another excellent post. Good to see you back, btw.

Yes, GPS don’t have enough time to provide the right support. And Diabetes.co.uk should make themselves more obvious to Joe Public.

 

[HSSS]

And Diabetes.co.uk should make themselves more obvious to Joe Public.

How?

 

[Listlad]

HOW do we make that happen and who do we need to target the message to.?

My mother in laws employer uses the top down and bottom up approach, a well known strategy. The idea is that we chip away at both levels so that they eventually meet in the middle.

On a note you pickup on, I was very dissapointed to see two stalls at my local Self Care event in July that were manned by DESMOND and the North West (NHS) Diabetes Interest group, neither of which had any reference to Diabetes.co.uk on their stalls but did have Diabetes UK leaflets on their stalls!

 

[Listlad]

How?

You might want to read my thread on my PPG meets.

 

[HSSS]

You might want to read my thread on my PPG meets.

I have, and am being proactive too, but specifically I was asking about making dcuk more visible to joe public as opposed to hcp and curious how you thought that could be done (other than through surgeries)

 

[Listlad]

I have, and am being proactive too, but specifically I was asking about making dcuk more visible to joe public as opposed to hcp and curious how you thought that could be done (other than through surgeries)

It is a question you might want to put to the advertising wing of Diabetes.co.uk

 

[HSSS]

It is a question you might want to put to the advertising wing of Diabetes.co.uk

Well you were the one who raised it so I thought you might have something more to say about it or to suggest. Don’t get me wrong I agree, the more that know about us the better and the .org gets better coverage as the national charity for diabetes but I wish it were the other way around. As a business (which I understand this is) it’s always going to be a bit tougher.

 

[Pipp]

Testing provides all the evidence. Yes.

No, I don’t agree. Testing provides some of the evidence. Only useful if the person is motivated to test diligently, and record along with other factors, such as food and drink consumed, along with their carb protein and fat content, any meds, exercise, age, gender, etc. Although we see many members motivated to do that, how many others with T2 can’t or won’t? Also, as you and several others of us have found the HCPs who are willing to change and accept new ideas are rare.

 

[Listlad]

Also, as you and several others of us have found the HCPs who are willing to change and accept new ideas are rare.

But I believe it is Dr Unwin who recently said that with the advent of the Libre doctors will no longer be able to deny the testing evidence it provides. An assertion I concur with.

 

[Listlad]

Well you were the one who raised it so I thought you might have something more to say about it or to suggest.

Sometimes things aren’t as simple to speak freely about as they seem.

But Reverting back to surgery level, I plan to try and filter in Diabetes.co.uk which so far I have not done. I would like my two surgeries to include them on their respective Facebook pages.

Also I am hoping Deb will be present at our next local Self Care event in November.

 

[Pipp]

But I believe it is Dr Unwin who recently said that with the advent of the Libre doctors will no longer be able to deny the testing evidence it provides. An assertion I concur with.

I wouldn’t argue with Dr Unwin..
However, I was contesting your claim that “testing provides all the evidence”. It is just an important piece of the jigsaw. Just as with any data, what is important is how that data is used. If someone is testing and collecting their data, then they need to have an understanding of the rationale. Just as important, the HCPs need to understand, too.

 

[DCUKMod]

.... (Those interested come here anyway, lets just make it official ) ....

Do they?

According to the official figures, someone is diagnosed with Diabetes every 2 minutes. We have a fairly frisky sign-up rate, but I doubt it's that, and of course, not everyone signing up here is newly diagnosed, not do a great many of them ever post.

 

[DCUKMod]

Sometimes things aren’t as simple to speak freely about as they seem.

But Reverting back to surgery level, I plan to try and filter in Diabetes.co.uk which so far I have not done. I would like my two surgeries to include them on their respective Facebook pages.

Also I am hoping Deb will be present at our next local Self Care event in November.

Listlad, I find your stance that testing provides all the evidence curious, bearing in mind you rejected it fairly and squarely. What has happened to change your view on this?

 

[jjraak]

Do they?

According to the official figures, someone is diagnosed with Diabetes every 2 minutes. We have a fairly frisky sign-up rate, but I doubt it's that, and of course, not everyone signing up here is newly diagnosed, not do a great many of them ever post.

View attachment 36103

good point.

maybe what i should have said is:
that those who are horrified by it, ( as i and many other seem to have been,) who also appear more pro active in searching for solutions and answers, who ALSO have the ability to search on line, in a relevant fashion,
Those People... DO seem to find there way here, to what i deem as a safe haven in a sea of misinformation.

Point taken, and nicely made, though.

 

[jjraak]

Do they?

According to the official figures, someone is diagnosed with Diabetes every 2 minutes. We have a fairly frisky sign-up rate, but I doubt it's that, and of course, not everyone signing up here is newly diagnosed, not do a great many of them ever post.

View attachment 36103

Just to add, a staggering number diagnosed, 720 each day almost 263 thousand a year.. just over a Million people every 4 years..and growing it would seem, according to many

I do count myself most fortunate to have found MY way here..
The idea i and so many others would just be signed off as unworthy of doing every thing to improve their condition because of cost cutting and outdated dogma, is truly appalling, and tantamount to negligence.

For so many to be on here, in such varied hues of dietary fashion (meat/vegan/etc) they choose, speaks volumes of how many do feel the 'official' routes do not offer the best way forward.

Surely it's incumbent upon us, those who have found an alternative route to safety of some sort,
to make the effort, as @Debandez posts outlines, so we DO reach out to others, with a message of hope rather then despair.

Whether they choose to listen or not is debatable, but surely they have the RIGHT to be aware.
why should it be only for us chosen ones.

As @Listlad posts, the 'official' sites seem to ignore the alternative methods, for their own reasons, sadly.

Don't those diagnosed need us all to be untied in our efforts to aid those in their moment of need ?
and who at worst need to be made aware there IS a choice.

I guess the style of adverts wouldn't make great reading for many

"Recently Diagnosed as T2D, and concerned about what that means to you health wise.
Interested in how other have, and you could too, manage T2D as well as possible ?

Want more information then is really possible at your 10 minute appointment with doctor
Plus the chance of a support network of fellow sufferers, people just like YOU, who were exactly where YOU are now,
who are able to offer advise that helped them, and MAY, help you manage and make some sense out of some of the best ways to manage T2D."

DCUK..Our door is always open..


or in a more. tongue in cheek Gung Ho fashion..

"Want the chance to maybe avoid the progressive illness and complications, your HCP says is inevitable with Type 2 ? "
1 in every 1000 chooses YES, join the survivors network, today.
DCUK, where Survivors Buck that " IT'S A PROGRESSIVE ILLNESS, DUMMY" advice,
day after day."

 

[DCUKMod]

.... As @Listlad posts, the 'official' sites seem to ignore the alternative methods, for their own reasons, sadly.....

I'm not sure what makes you feel Diabetes UK is an "official" anything. It is a UK charity, founded in 1934. Their 2018 annual report states the following:

For absolute transparency here, I am a retained employee of diabetes.co.uk. I am also an officer an volunteer for my local Diabetes UK group, and am also engaged in PPI, as a patient expert at our regional NIHR, which is linked closely (same building, and same leaders) as the regional diabetes Centre of Excellence. Posting this content on this thread, I am posting as an individual.

I know from the latter involvement how much money Diabetes UK invests in research, and it seems very likely that every single one of us will have benefited from one of their funded research programmes on our journey to where we are today. Personally, I am grateful for that.

Sadly, the diabetes landscape is huge. There is a place for DCUK, DUK and several more out there, if they cover a wider audience, providing what individuals need.

Where did I come for advice when I was diagnosed, out of the blue, and where were my life-changing learning garnered? Here, from people like all of us.

(As a matter of balancing detail, DCUK was formed in 2012, but one man who wanted better health outcomes, initially from his grandfather, who had been diagnosed, but then altruistically wanted everyone else to have somewhere to go. DCUK was born.)

I think there are many, many good people out their ploughing their furrows; some more overtly than others.

One thing I can say for sure is that for anyone looking to work with the NHS and change minds, the way forward isn't likely to be name calling and telling folks "our medicine is more powerful than your lots".

Distasteful though it may be, medicine at the higher levels is a very political arena, where making enemies is a lot simpler than making friends.

 

[Listlad]

Listlad, I find your stance that testing provides all the evidence curious, bearing in mind you rejected it fairly and squarely. What has happened to change your view on this?

I have never changed my view.

 

[jjraak]

I'm not sure what makes you feel Diabetes UK is an "official" anything. It is a UK charity, founded in 1934. Their 2018 annual report states the following:

View attachment 36108

.

all very useful info, cheers.
sure DUK does sterling work

And for the official, perhaps i should have said, officially recognised, which was the only site i was referred to to at Diagnosis.
if i hadn't found my own way here, would i ever have been pointed to it by others in the health care community?

Shouldn't THAT stop ?

Isn't that what the entire post is about.
Letting others KNOW there is another way, IF they can choose to learn more about.

Why must so many of our fellow sufferers be left alone in the dark at diagnosis, and have to do their own research to find THIS site
Surely they have the best chance to manage their own condition if they have as much information as possible, when they need it.
Bur first we have to let them know it's there, surely.

Sorry you feel i'm name calling.
i did feel DUK didn't offer the value of support that this forum does for ME.
i'm pretty plain speaking, i doubt politics would be my ideal profession, as you could probably guess

here i found clear information that has helped me.
On DUK i didn't
that is what forms my opinion

yes we should all be the best of friends, but doesn't that mean acknowledging there are other avenues.

The amount of posts i run into where too many comment that they found a solution one here, put into practice
with PROVEN benefits, acknowledged by those a such, who care for them, then only to be berated by those very HCP's who should know better, that they must stop, and follow the approved programme.

That to my mind is where the disconnect is, with reality.
it's a disease, overwhelming more and more of us.
the current solutions don't work, the current DUK site information doesn't work for many.

yes i do champion the information on here.
i can't the information on DUK, but then, that doesn't need it, does it.

it is, whether officially or unofficially the only site that newly diagnosed Type two's are pointed towards.

THAT is the reality, and that is why we need to end this lottery of being savvy, connected or just plain stubborn enough to get as much information as possible to make an INFORMED decision, based on as much of that available knowledge as possible.

Others deserve that chance.

 

[Listlad]

I wouldn’t argue with Dr Unwin..
However, I was contesting your claim that “testing provides all the evidence”. It is just an important piece of the jigsaw. Just as with any data, what is important is how that data is used. If someone is testing and collecting their data, then they need to have an understanding of the rationale. Just as important, the HCPs need to understand, too.

Agreed. Raw data isn’t enough.

 

[DCUKMod]

I have never changed my view.

To be honest I'm aghast at that. How does it marry with your serial rebuff of suggestions you test your blood glucose, in order to discover what's going on. I'm sorely tempted to consider your approach as a case of "do as I say, not as I do".

Hey ho. Every day's a school day in my world.