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

[Debandez]

Its world diabetes day on 14th November.

It seems a good day to highlight to the powers that be that:

1) current t2d guidelines are wrong
2) we need to be offered blood glucose monitors (what is measured can be managed)

It seems the majority of us coming to this site (and many others) are actively discouraged from testing. My DN said it can become obsessive and there really is no need to test! Apparently a 6 month hba1c that confirms AVERAGE bg in a 2/3 month period is the only monitoring we need to do. I liken this to being a mountaineer, if I scaled the highest mountain putting my life in jeopardy or a small hill where I could ramble along only an average would be recorded. I'm risking my life moreso climbing the biggies I feel!

I wonder how many would like to fund & cannot afford it? It should be provided for all T2'ds that demonstrate a firm commitment to want to manage their diabetes AND the benefits of testing should be explained clearly. We are all different, not one size fits all (unfortunately).

So I'm just testing the water here (not the blood just yet). If I was to set up a template letter along the above lines which we could each send to our respective CCGs (or equivalent outside UK) where there would be a blank page for you to write your own words if required who would be up for doing this?

My initial plan was to set up a petition, collect lots of signatures demanding change and march to no. 10 wearing my brightest yellow vest! But although dietary advise is being challenged and we are seeing lots of remission journeys in the media, maybe I'm being a little too optimistic. He is a tad busy at present our Boris!

Apart from sending to CCGs we could also send to high profile T2Ds like Tom Watson. The health secretary Matt Hancock. Head of NHS England. DUK. Etc etc. Any suggestions welcome.

I can help with putting letter together if you want to back up the standard letter with details of your own journey.

Really I'm just putting out the feelers. Is this the best place for this thread even?

Any feedback appreciated

Thank you.

Happy Monday to all.

 

[jjraak]

Great idea @Debandez

i utterly fail to see how measuring the toxicity of the foods we ARE clearly allergic to,
can be anything BUT beneficial.

While it would be a cost.( .isn't it always. ) if we weigh up the inital cost with the lifetime costs, it works out pretty cheap,
AND it's the RIGHT thing to do...what right does anyone have to just write us off, without even giving us a chance to prove or attempt a way of managing our T2D that is clearly showing great promise.
(source: Dr Unwins surgery, Most of the posters on here with T2D.)

Given the argument WILL be it's just TOO expensive..
(today, perhaps..., but who cares what it costs us tomorrow.. Cash and Health wise )

Wouldn't a halfway house of allowing each NEW T2D, ONE set of low end glucose meter + 50 strips...(think codefree)

Then if those taking up the offer benefited, they now have an option of providing further strips for themselves AFTER seeing the efficacy of the Meters and all the impact certain foods have on them

for those who take but don't follow up or use well for whatever reason, that seems a small cost to pay, to give someone the CHANCE of a more successful (and by dint , less costly interventions) future as a Type 2.

Add in with the cost implication, pretty sure some accountant somewhere will be monitoring the success or not of the program and roll out..

IF we can mainly buck the trend of it being progressive, it follows many others once aware, COULD also follow in our footsteps..and surely THAT in itself could make it become the de facto tool for that all important first interventions ?

Thus freeing up those who agree but are currently oppressed in giving us freely information that contradicts the outmoded guidelines, dictated at present.

I like the high level 'celeb' type 2's being targeted..much easier if we have a successful role model fighting our case, i think.

Keep us posted @Debandez

 

[Member496333]

i utterly fail to see how measuring the toxicity of the foods we ARE clearly allergic to,
can be anything BUT beneficial.

Understanding which foods can cause metabolic issues is only beneficial to those eating them. Those selling them would rather you didn't know, and their influence is far reaching.

 

[jjraak]

Understanding which foods can cause metabolic issues is only beneficial to those eating them. Those selling them would rather you didn't know, and their influence is far reaching.

i'd agree, but we have to start somewhere jim.

And it's always going to be that cost ratio, that will win it for us,

Once we get beyond the initial payment, and others can see proof that PEOPLE can improve their control,
and thus require less medication/interventions and live healthier lives,..that is the dream and where we need to be

THAT is the moss on our rolling stone, the more it works the less resistance we'll get to this new faddy idea of eating
less of the Toxic food stuffs that cause us harm.

While those who can influence will certainly try, others who can see the benefits, will then join us in our clamour to be heard

We have nothing to lose really.

"they can take our meters,
but they'll never take our
FREEDOM..."

 

[Mbaker]

Yes definitely, I'm in.

 

[Member496333]

i'd agree, but we have to start somewhere jim.

And it's always going to be that cost ratio, that will win it for us,

Once we get beyond the initial payment, and others can see proof that PEOPLE can improve their control,
and thus require less medication/interventions and live healthier lives,..that is the dream and where we need to be

THAT is the moss on our rolling stone, the more it works the less resistance we'll get to this new faddy idea of eating
less of the Toxic food stuffs that cause us harm.

While those who can influence will certainly try, others who can see the benefits, will then join us in our clamour to be heard

We have nothing to lose really.

Totally agree. It's a noble cause.

 

[Goonergal]

I wonder about including some sort of cost benefit analysis in the letter - money talks!

Dr Unwin has published his own data - results and savings in his surgery. Analysis of cheapest meters/strips for a suggested timeframe vs potential savings would make a strong case.

@Mbaker I think I recall you mentioning (quite some time ago) that you'd looked into this.

 

[Mbaker]

I wonder about including some sort of cost benefit analysis in the letter - money talks!

Dr Unwin has published his own data - results and savings in his surgery. Analysis of cheapest meters/strips for a suggested timeframe vs potential savings would make a strong case.

@Mbaker I think I recall you mentioning (quite some time ago) that you'd looked into this.

I have made a few noises for sure, but have lost some momentum. I think I can add some value as @Debandez and I have conversed previously and her example and profile are just stunning. Regarding the approach I would contribute I will run it by you both by PM in the first instance (over the next couple of days), as I have put in some background effort, however my approach I hope has taken a turn after watching this YouTube yesterday, after what Dr's David Unwin and Sarah Halberg said was the best approach to open doors.

It was interesting to note the answer to the point often raised as to why Dr Unwin doesn't talk about the HF component of LCHF, makes perfect sense now:

 

[Fndwheelie]

I’m up for that if it’s kept simple, something I can copy and paste, writing letters isn’t my strong point. And a dummies guide to finding out where I need to send it.

 

[ianf0ster]

I'm in.
I also suggest adding David Davis to the list (possibly even Theresa May - though she is a Type 1 may be sympathetic) and also add some non-political celebs to the list. Hopefully some of them will be good at building a following.

 

[Fndwheelie]

possibly even Theresa May - though she is a Type 1

Maybe she will understand how impossible it is to be aware of sugar levels if she’s not testing her levels. I know it’s different for type 1 to type 2 but if she can’t guess what her levels are how are type 2s supposed to get any idea if they are not issued with a metre and strips? (I know she’s using a libre now, but assume she had to do it ‘the old fashioned way’ before)

 

[HSSS]

I’m in. is it worth actually explaining how a type 2 uses a meter and why though? So many hcp think it’s only for insulin dosing and hypo avoidance/ treatment and have no idea it’s uses for assessing food suitability

 

[Swiggy]

Count me in too.

 

[carol43]

Count me in as well - sent from sunny Portugal. I understand it's a bit wet at home.

 

[Diawara]

count me in..i was the only one controling my sugars our way in june at my surgery.. which reminds me i havent had an invite for a three monthly hba1c yet...

 

[Brunneria]

My problem is that I don't think the the NHS can afford to provide testing equipment for T2s.
The money simply isn't there.

I totally agree that it is a wonderful ideal. Every T2 should have access to testing if they are willing to put in the time and effort to learn how to use those tests to control their blood glucose via appropriate methods. Yes. Absolutely.

But I simply don't think the money is there. There isn't the money to provide many urgent services that would be beneficial to people. Budgets are getting tighter and tighter all the time.

We may all consider that by testing now, and testing appropriately, vast amounts of money could be saved on avoiding future complications. That is a powerful logic. But NHS budgets focus on THIS financial year, not what MAY happen in 20 years. The bean counters and number crunchers don't plan that far ahead. Never have. Never will.

And I certainly wouldn't want to take money from other current services, some of which are urgent and ongoing, to provide testing equipment to T2s. Cancer treatments, vaccinations, heart surgeries, clinics...

And how much would it cost to train the NHS staff to reach the point where they could train the new T2s on how to use their tests effectively? I have not yet met an NHS staff member at any of my appts who has understood that the prick tests can be used to modify diet and control bgs. They all seem to think in terms of testing to avoid hypos and inform medication choices/doses. So there would have to be a national program of NHS staff training to educate them all to the point where they could help the T2s test effectively and benefit from the process. That would have significant cost.

My own situation is that I pay prescription charges, yet I can buy a tub of 50 test strips for £7 whereas the cost to me of an NHS prescription charge is currently £9 https://www.nhs.uk/common-health-qu...-treatments/how-much-nhs-prescription-charge/
I can't in all conscience ask the NHS to provide me with test strips under those circumstances. Plus, of course, the NHS probably pay more than £9 for 50 strips, plus the admin costs associated with processing the prescription, plus seeing the doc for reviews, etc. etc. The costs would just spiral upwards.

I might be open to supporting the NHS provision of test strips for a fixed term after diagnosis, for those who are unable to afford to fund their own testing. But how on earth would you set that up? Means testing NHS patients goes against everything the NHS stands for, and the cost of administrating it would make it absurdly expensive.

 

[Bildad]

Great idea @Debandez count me in. I would agree with @Brunneria about the lack of available money in the NHS and the short term view that causes. That said raising awareness and possibly opening some eyes is no bad thing.

 

[Goonergal]

I might be open to supporting the NHS provision of test strips for a fixed term after diagnosis, for those who are unable to afford to fund their own testing

I think this is what the focus should be. Doctors to give guidance on testing and fund for a short period. There’s a trade off in my mind. Rather than prescribe medication (metformin or stronger) for the first couple of months, for those who are interested and motivated to try diet/lifestyle approach fund meter and strips instead.

Now, the net cost to the NHS of metformin on prescription may be less than meter/strips over a 2-3 month period, but over the longer term, savings from those who successfully implement lifestyle changes will far outstrip any short term cost. Dr Unwin’s figures should help to demonstrate that.

If such an exchange needs to be limited to those who can’t self fund, then a simple measure such as those already on benefits - and therefore would already be in receipt of free prescriptions - should be a workable scheme.

 

[Member496333]

Perhaps a good place to start would be to stop telling T2 patients NOT to test.

 

[Listlad]

Its world diabetes day on 14th November.

It seems a good day to highlight to the powers that be that:

1) current t2d guidelines are wrong
2) we need to be offered blood glucose monitors (what is measured can be managed)

It seems the majority of us coming to this site (and many others) are actively discouraged from testing. My DN said it can become obsessive and there really is no need to test! Apparently a 6 month hba1c that confirms AVERAGE bg in a 2/3 month period is the only monitoring we need to do. I liken this to being a mountaineer, if I scaled the highest mountain putting my life in jeopardy or a small hill where I could ramble along only an average would be recorded. I'm risking my life moreso climbing the biggies I feel!

I wonder how many would like to fund & cannot afford it? It should be provided for all T2'ds that demonstrate a firm commitment to want to manage their diabetes AND the benefits of testing should be explained clearly. We are all different, not one size fits all (unfortunately).

So I'm just testing the water here (not the blood just yet). If I was to set up a template letter along the above lines which we could each send to our respective CCGs (or equivalent outside UK) where there would be a blank page for you to write your own words if required who would be up for doing this?

My initial plan was to set up a petition, collect lots of signatures demanding change and march to no. 10 wearing my brightest yellow vest! But although dietary advise is being challenged and we are seeing lots of remission journeys in the media, maybe I'm being a little too optimistic. He is a tad busy at present our Boris!

Apart from sending to CCGs we could also send to high profile T2Ds like Tom Watson. The health secretary Matt Hancock. Head of NHS England. DUK. Etc etc. Any suggestions welcome.

I can help with putting letter together if you want to back up the standard letter with details of your own journey.

Really I'm just putting out the feelers. Is this the best place for this thread even?

Any feedback appreciated

Thank you.

Happy Monday to all.

Great idea.

Meters and Freestyle Libres should be demo-ed on DESMOND courses by good video examples to illustrate the salient benefits of using a meter.