annmaried

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Yes I’m new to diagnosis Type 2 about 4 months ago and have got more info on here than from my GP or nurse. All the reasons stated make sense, would help me take control if I had a monitor but no advice given other than carbs are bad. Anyway I would be happy to sign, send, contact March!! if needed
 
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DCUKMod

Master
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14,298
Type of diabetes
I reversed my Type 2
Treatment type
Diet only
well in that spirit .;)

"Personally, I was told to avoid the internet as there were some very odd people out there."
yet doctors seem happy to direct patients to the DUK site.

"Those who want to know more, will seek out information. Those who don't, won't. "
mmhh..so we don't tell them there is an alternative, because they should find that out for themselves..but lets point them to DUK, tho'

"yes we should all be the best of friends, but doesn't that mean acknowledging there are other avenues."
I don't understand what you're actually saying there.


with reference to that it is that MAYBE it should all be more inclusive .
if we tell most of the DUK, why not tell most about the DCUK ?

"it is, whether officially or unofficially the only site that newly diagnosed Type two's are pointed towards."
We do have people here who have been directed here, and of course, were their GP David Unwin, Campbell Murdock, Loanne McCormack or Ian Lake, or their diabetes nurse, Cath Cassell, to mention just a few, they definitely would be directed here, if they wanted online interaction
.

And yet in terms of numbers, it's a long way off the mark for equal footing, even if not all came or wanted to come.
the point is there should be more transparency..
i never got directed by Dr Unwin here, or any of the others
i doubt i am a lone exemption.

i hear your balance in what you say, and a lot i DO agree with.
but i do not accept that the status quo is where we should stay, the move forward must be to be better transparency
for those who do ask at surgery "What can a do now, Where can i seek help"

Those, as was i,,, are in that moment of dire need, and a little shocked i'd expect...they should be given as much help as possible,
not left to HUNT on line, because if they needed help they'd look for it..

if that means we tell them about OTHER website beyond the DUK one, i say let it be so.
all inclusive, means we tell newly diagnosed, of every avenue that show real merit, of which i say this is One..

Your last point is relevant.
and no i have not, i still have one HBA1C to go before i feel confident in 'confessing' i rejected their advice and went LCHF.
For me, My doctors should be a safe haven of confidentiality and caring, pertinent advice..so not happy to make it a fraught experience because i buck the advice given, as so many on here post it has become for them.....for now.

I do however hold out hope that next year i will be offering something back in the hope my small involvement can change a few mindsets.

I am also conscious we may be in danger of derailing this thread.

let me leave the last word to your reply,
and just say i admire the outlook and effort you make on here and elsewhere.
i have much to be grateful for from this site.
I hope while we can agree to differ, the outcome we both seek, isn't too far away.

best regards.


The point I am making is that not all health care professionals recommend DUK. I have no challenge that yours did, but mine did not, and discussion with others'; both at my local DUK group and in groups containing T2 from a wider geographical area, are that many Doctors do not recommend the internet.

Not everyone has the same experience, and even if they did, not everyone will take the same action, based on generally similar information.

I still contest, based on member numbers, that "most are told of DUK". It is my firm belief that most are advised not to visit the internet, due to the quantum of information and the often conflicting nature of it.

In terms of your final point on engaging in your locale. I would encourage anyone to engage in whatever way they can in their locale. If everyone waited until they were the "real deal, perfect diabetic", there'd be nobody out there.

To be honest, some of my greatest learnings, both with diabetes and life in general, have come from mistakes I have made, or blind alleyways I have frustratingly explored.

Finally, if you visit the NHS App Store, the DCUK Low Carb Programme is there, approved by the NHS and available on prescription from GPs. For the life of me, I can't find anything there bearing anything like the DUK logo.

Different people, and groups do things in different ways.
 

DCUKMod

Master
Staff Member
Messages
14,298
Type of diabetes
I reversed my Type 2
Treatment type
Diet only
Exactly. Not easy to find. And that’s for you Jim. How about Joe Average?

One place seems easier to find than others. Can you guess which is which?

upload_2019-10-10_21-59-44.png
upload_2019-10-10_22-0-39.png
 
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DeeAitch

Active Member
Messages
30
Type of diabetes
Type 2
I’d like more support nutritionally, whilst not ‘poor’ £14.99 a month for a diet plan is a bit more than I’d like to commit to on a regular basis, so I think the NHS could provide say a years worth of diet plan to the newly diagnosed, as whilst I’ve been given charts etc. Translating into a meal plan can me daunting & I feel somewhat unsupported by my GP
 
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bulkbiker

BANNED
Messages
19,576
Type of diabetes
Type 2
Treatment type
Diet only
I’d like more support nutritionally, whilst not ‘poor’ £14.99 a month for a diet plan is a bit more than I’d like to commit to on a regular basis, so I think the NHS could provide say a years worth of diet plan to the newly diagnosed, as whilst I’ve been given charts etc. Translating into a meal plan can me daunting & I feel somewhat unsupported by my GP
Maybe check out www.dietdoctor.com loads of free content?
 
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Debandez

Well-Known Member
Messages
4,019
Type of diabetes
Type 2 (in remission!)
Treatment type
Diet only
I fully support the offering of BG monitoring kit to T2s.
Those motivated enough to make use of it can see big gains in understanding of how their body works and reactions to food and medication.
They should be fully supported in this.

I suspect the cost won't be that high in real life.
Any costings based on the total number of T2s will be misleading, because as far as I can tell the people motivated to use testing are likely to be in a minority.
I know this was used in the past to justify not supplying testing materials ("They'll just ignore it/Sell the strips on eBay") but we must still be aware of the general low level of involvement by T2s in changing their lifestyle to control their condition.

I would go further with funding.
Established T2s (more than a year from diagnosis, and at least every 5 years) should be offered a training course on the latest diabetes knowledge (a lot has changed over the last 5 years; even more over 10) and the opportunity as part of the course to wear a Freestyle Libre (or similar) with the results being discussed as part of the course.
This would be an enormous step forward in education and hopefully show long term benefits.
I am assuming, of course, that anyone taking part is motivated enough to take regular scans of the sensor which will then be visible to the surgery/training organisation.
£50 per participant and the up front cost of a reader must be trivial compare to all the other ongoing costs.
The information gathered is far more comprehensive than finger pricks.
At a minimum this could be part of the annual review every 5 years, say.
How good would this be. Libres are complete genius. I absolutely love mine. Today's graph. Breakfast a mushroom omelette, lunch a choc n nut bar, dinner out with an old friend chicken in a stilton sauce served with veg and a glass of red. Graphs, estimated a1c, averages, daily patterns time in target, daily graph and much more. They wont be able to get away with it for much longer with technology like this..and technology is only going to get better
 

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Debandez

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Type of diabetes
Type 2 (in remission!)
Treatment type
Diet only
Point taken.

I think that what Deb is seeking to achieve can help change mindsets and tip the balance towards better support. It may not happen overnight but over the course of time (hopefully sooner rather than later) the benefits will be seen to outweigh the costs paving the way for blanket coverage.

Incidentally @Debandez wouldn’t it be great to see a BBC or ITV documentary on this whole thing?

I was asked by the pr team if I could
Debs I admire your determination, however I think alot more needs to be done with re-educating the NHS and public in regards to diet starting with the eatwell plate.

Handing out technology to willing participants is a good idea, but many folk are ignorant to tech and it's advantages and then to manage the information to help them, I know type 2's who bury their heads in the sand upon diagnosis and keep on eating the same diet without any idea as to the effect on their health, partly due to age, partly due to years of misleading information with low fat/high sugar, I think to make a difference you have to start with re-education and once people are empowered and finding their way to then help them further with testing, but under the care of their diabetic team so that they know how to handle the information, otherwise you're giving someone a formula one car with no idea how to drive it.

Agree totally and this is exactly why I'm manic on social media, doing every PR opportunity that comes my way, doing talks to whoever's wants me and whoever will listen, running clinics at my gp surgery for pts that WANT help. Currently working on ITV/BBC (local) to come and film me in one of my sessions. I will be frantically waving a bs monitor around and @Rachox brilliant blood glucose monitoring leaflet shouting how important it is to test. Sadly I wasn't allowed to take it onto the This Morning interview due to 'time constraints'.

Every little helps.

Since I was dx dec 17 I feel things have heated up on lchf working to control bs. It feels like a snowball growing in speed and size. With technology advancing rapidly they wont be able to ignore us for much longer. The libre sensor is a game changer.
 

Debandez

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Messages
4,019
Type of diabetes
Type 2 (in remission!)
Treatment type
Diet only
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 :rolleyes: )
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.?

Yes yes yes! Brilliant. I love more than anything Googling a solution and finding it on YouTube and watching it unfold before my eyes. I think this is a great idea. A 'how to test' video, including general hints and tips. Link it here and youtube. @DCUKMod might advise on if this could be done?
 
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Debandez

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Messages
4,019
Type of diabetes
Type 2 (in remission!)
Treatment type
Diet only
All I would like to see as a start is something that has almost zero cost! No real training required - just a leaflet stating the basics.
Just to tell all T2 Diabetics that:
1. Blood Glucose spikes and overall high BG levels can cause problems.
2. That different people have different tolerances, but that in general all carbs contribute to high Blood Glucose levels and spikes.
3. That for Type 2 Diabetics, the Eatwell plate and the 5-A-Day emphasising fruit are actually wrong.
4. That in the light of the above, it is suggested that it is good for T2's to test their BG, That all that is required initially is one of the cheaper meters with cheaper test strips - approx £20 plus postage for a full kit plus extra 50 test strips.
5. Give the basic instructions on testing: - Test to see the effect of meals on BG; Test before and the 2hrs after meals; Aim for BG below 7.8 and for no more than a 2.0 spike between the before meal and the after meal numbers.

Getting there. @Rachox did bg leaflet and I did this for surgeries to hand out. Vetted by HCPs so had to develop with caution and hold back on fats etc but could work on it.
 

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Debandez

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Messages
4,019
Type of diabetes
Type 2 (in remission!)
Treatment type
Diet only
I fear #3 is just too big a step. They can’t and won’t admit they got it wrong. Best we can realistically expect is a gradual shifting of their position as “new” science is discovered!
Libre sensor. Dr unwin did a banana test. His bs spiked to over 10.
 
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Debandez

Well-Known Member
Messages
4,019
Type of diabetes
Type 2 (in remission!)
Treatment type
Diet only
It is the deception that really annoys me. When I was first diagnosed I was told it was important to record blood glucose levels several times a day, and suppliedwith the tools for doing so. I continued to be provided with the test strips, for a couple of years, ( expensive for NHS, which often is the case as suppliers see NHS as a cash cow, and charge premium rates) . Having failed to gain control following the diet advice given, and having found my own way to lose weight and regain non- diabetes levels, I was congratulated, and told that as I had ‘cured myself’ (nurse’s words) I no longer needed to test. I fell for that, because I wasn’t aware at the time that the mantra had changed. I have heard so many with T2 since repeat that script, almost word for word. “No need to test, as all that will do is give me bruised fingers, and make me obsessed and anxious”. That is really criminal to lie, rather than tell the truth, ‘Your care is too expensive’.

What I feel would be helpful would be re-education of HCPs to include the advice that it need not be expensive to test, and give the option of the patient purchasing the affordable test kit many of us here use, plus advice about the correct use of the test data for the individual. Also to include this in any patient education programme.
Once i got to grips with what foods I could and couldn't eat I tested less so costs went down. Costly to provide to start but maybe NHS fund for 3 month period maybe. Better than nothing.
 

Debandez

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Messages
4,019
Type of diabetes
Type 2 (in remission!)
Treatment type
Diet only
Which is why “new” was put in quotation marks ......

yep should be obvious but obviously isn’t.

I did note the difference (whole pop v t2) but still feel admitting that they caused or mistreated the diabetes/obesity epidemic would cause more than a red face or two and mean they couldn’t blame the patients anymore. No gov (of any flavour) will taken the fall on this one imo.
The truth will out in the end.
 
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Debandez

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4,019
Type of diabetes
Type 2 (in remission!)
Treatment type
Diet only
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.

I feel the same. I know little about DUK other than the booklets I received at dx were all from DUK. The website which I have been testing all month has every path leading to starchy carbs, even the path 'preventing type 2 diabetes' and 'low carb' info and recipes. Of course every page has a donate button. DUK and DCUK appear at opposite ends of the spectrum. I'm so mad I've tweeted a PM to DUK questioning their advice and received this:

'Hi Debra. The information we provide is based on the most up to date and credible evidence. We also take into account that everybody has different dietary and nutritional needs according to their diabetes type, medical conditions and lifestyle and would always recommend consulting a dietitian for specific advice. Our information comes from our clinical team in conjunction with senior clinical advisors. You can read our nutrition guidelines here: https://t.co/VzAOb6S6lL You can also read our low-carb position statement here: https://t.co/HjwrA69hRc We hope this answers your query, but do get back in touch if we can be of any further help'

Of course I did get back in touch. I didnt spare the horses. My 'case' has now been escalated to a complaint case so looking forward to seeing where this takes me!
 

Debandez

Well-Known Member
Messages
4,019
Type of diabetes
Type 2 (in remission!)
Treatment type
Diet only
I realize your forum here is for T2s, but CGMs help T1s, too. Here in California, there is a bill (and I believe there's a national one, too) to make CGMs available for all diabetics. It only makes sense.
Hi, forum open to any type and everyone welcome.

Thank you for this! Wow that is brilliant....do you have any more info please?
 

Debandez

Well-Known Member
Messages
4,019
Type of diabetes
Type 2 (in remission!)
Treatment type
Diet only
I wonder how many meters & strips the NHS would have to pay for if newly diagnosed people were just given the offer of testing. I suspect a high proportion of T2s would not bother. I understand that in the past UK T2s were issued with meters and a few strips, but not given much guidance as to how to use them, or the benefits of so doing. I have a T2 friend who when first diagnosed was given a free meter and a regular supply of strips. He tells me he used them so little, he would throw strips away that had gone out of their use by date. Now the NHS no longer gives him these supplies he has seen the error of his ways and bought his own meter and funds his own supplies, and he regrets those wasted strips. Because people here are so motivated I think we forget that probably the majority of the T2 population are not.

I have a friend, dx at the same time as me. Chose a different path. He sees what I've done, I share so much info on my social media. But he openly says.' I like my food too much so will just take the meds' rarely tests. I explained that meds just act as mop and bucket and you need to stop the leak. But its fallen on deaf ears. Hba1c on the way up. DN not happy. He has had so many kidney problems (hospitalised twice) skin issues that are driving him mad and other things I suspect are associated with his t2d but he insists on his weekly blow out Chinese and bottle of red Saturday. Pizzas, chips, currys, rice, potatoes.

He thinks meds are a cure.

Education is key. More emphasis on complications. Confirm meds only help with sugar a little and certainly dont sort out the t2d. Only way to do that is to change woe

Emphasise testing essential to gain good control and only way indeed to confirm what you can and can't eat. But when testing is instantly dismissed as pointless and 'only makes you obsessive' it makes you feel there is no point. Hba1c is apparently the only important number. The fact its must an a erage and doesnt capture peaks (which cause the complications) is not important. And when you are given leaflets confirming you can eat a balanced diet and nothing is out of bounds (page 19 my DUK booklet) and pointed to website that is full of rubbish (food and info!) Then is it any wonder we have an.epidemic growing by the second.
 
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Debandez

Well-Known Member
Messages
4,019
Type of diabetes
Type 2 (in remission!)
Treatment type
Diet only
That’s not what I took from @DCUKMod post ie to confine the knowledge. more that it’s here if they want it. Maybe a little despondent about people’s lack of motivation to hunt down info the way we all did.

I think we all want it spread far and wide don’t we? So that everyone who could benefit has the option available
To be given the choice. That's the top and bottom of it.
 

Debandez

Well-Known Member
Messages
4,019
Type of diabetes
Type 2 (in remission!)
Treatment type
Diet only
Yes I’m new to diagnosis Type 2 about 4 months ago and have got more info on here than from my GP or nurse. All the reasons stated make sense, would help me take control if I had a monitor but no advice given other than carbs are bad. Anyway I would be happy to sign, send, contact March!! if needed
At least you got carbs are bad! Blimey I nearly fell off my chair reading that. Were you given the usual DUK booklets and offered the DESMOND course?
 
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Debandez

Well-Known Member
Messages
4,019
Type of diabetes
Type 2 (in remission!)
Treatment type
Diet only
I’d like more support nutritionally, whilst not ‘poor’ £14.99 a month for a diet plan is a bit more than I’d like to commit to on a regular basis, so I think the NHS could provide say a years worth of diet plan to the newly diagnosed, as whilst I’ve been given charts etc. Translating into a meal plan can me daunting & I feel somewhat unsupported by my GP

There is a great link to food and recipe thread here:

https://www.diabetes.co.uk/forum/threads/what-have-you-eaten-today.75781/unread

This is a great book on offer for £6 here (click.n collect available) plus 25% discount code on site.

https://www.theworks.co.uk/?gclid=C...9EALw_wcB&q=The Diabetes Weight-Loss Cookbook

Great visuals here:
https://phcuk.org/sugar/
 
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