Open letter to the media about the realities of diabetes

[Northerner]

cherrypie suggested we put together a letter to send to all the various media organisations who consistently misreport things. I think we should get our heads together and decide the main points of what needs saying and try to think of some way of making it 'newsworthy' so they might even feel like publishing it! 🙂

Steff's thread about the incorrect comments/assumptions is a good start, so we can use that and this for ideas! 🙂

 

[cherrypie]

We need to explain the different types of Diabetes as the media lump them all together and how it causes a lot of confusion.

How reading inaccurate articles is very upsetting for all diabetics.

Explain about genetics regarding different types.

We are all shapes and sizes an different age groups. We could follow this up if people are prepared to be described, no names just MissX, Mr.Y.

Some Type2's have been diagnosed after taking other meds, i.e. steroids, antidepressants, beta blockers.

Just sounding off with possible ideas.

 

[Nicky1970]

If we could pin down the amount the NHS would save if all diabetics were given the tools to tightly control their diabetes (eg strips) plus savings in incapacity/disability benefits , etc then they'd probably take a bit more notice.
Also put in that not all obese develop the T2 (again quantify) and indeed not all type 2s are overweight.
I'd name a few celebs as well, Steve Redgrave, Jimmy Tarbuck, Billie Jean King to name a few.
Brief case studies?

 

[MeanMom]

Diabetes UK ought to be doing this

At least they should be involved IMHO

 

[Pumper_Sue]

Can you put everyones views into a poem Alan?

 

[Hazel]

Alan, you know my thoughts on the lack of carb counting courses for T2s, especially T2s on insulin.

Dafne is NOT available to T2s. But as adults, we have a lifetime of eating habits which, suddenly has to be rethought, with little or no help.

In the 2 years I have been on insulin (T2 for 11 years) I have only recently discovered that it is bread which 'spiked' me the most. I have all but cut it from my diet, and as a result, my insulin intake is down by over 70%, and my weight is coming down too.

I wish you luck in your quest - time someone took it to the authorities, and yes I agree with a previous post, DUK should be doing something.

 

[Northerner]

Diabetes UK ought to be doing this

At least they should be involved IMHO

I will certainly see what can be done to involve them when we've got something together.

Can you put everyones views into a poem Alan?

I will try, although the Muse has neglected me of late!

 

[trophywench]

I think too we should highlight lack of education for diabetics.

It is absolutely no use whatever and a complete waste of money, in providing the tools and not teaching how to use them to best advantage - Jennifer's Advice/Alan's Test, Review, Adjust - to every newly diagnosed diabetic. Possibly a free copy of Gretchen Becker?

A free copy of Ragnar Hanas to every T1, a free copy of John Walsh to every new pumper ......

A free copy of Carbs & Cals/the Collins Gem Calorie Counter to all.

A list of forums like this!

Wow - we could be redundant! Success!!!!

 

[Northerner]

...Possibly a free copy of Gretchen Becker?

A free copy of Ragnar Hanas to every T1, a free copy of John Walsh to every new pumper ......

A free copy of Carbs & Cals/the Collins Gem Calorie Counter to all.
...

This is something I have been thinking about campaigning about for a while recently. Everyone I know who has read either book (whichever is the most relevant to them) has nothing but praise. Imagine how much the NHS could save by providing a ?20 book for Type 1s and a ?6 for Type 2s, either at diagnosis, or even for those that have been diagnosed for some time but still don't really understand.

 

[PattiEvans]

I think the lack of education for both types is appalling. T1s are given what could be a lethal substance to inject and told very little about it. T2s are advised to eat the very diet guaranteed to make their disease progressive and given little or no education in some areas and no tools to manage their disease, but I digress, wasn't the letter meant to educate the perception of diabetes seemingly shared by all the media?

 

[Northerner]

I think the lack of education for both types is appalling. T1s are given what could be a lethal substance to inject and told very little about it. T2s are advised to eat the very diet guaranteed to make their disease progressive and given little or no education in some areas and no tools to manage their disease, but I digress, wasn't the letter meant to educate the perception of diabetes seemingly shared by all the media?

Indeed - I think that we need to write an entirely different letter to the NHS 🙂

 

[MeanMom]

We are straying a bit from the original point of the letter arent we? The issue of media coverage of diabetes and the issue of lack of education and/or support for new and established diabetics are two different ( equally worthy) issues.

Agree that everyone should be given copies of the relevant publications, or at least made aware of them by medical teams, but I believe as I have said above and also in previous posts, that it should be a major role of DUK to 'educate' the press and by extension the general public, about diabetes. If facts are mis stated in National newspapers they should be active In putting the record straight, etc.

We can't expect the general public to be experts on diabetes but if they are fed the same incorrect and alarmist information over and over it becomes 'fact' in their minds. We may regard things like the X factor as 'fluff' but a large proportion of their audience are young impressionable teens. Many people think if it's in the Paper (or on the Internet) it must be true. Papers at least should be made to check their facts regarding health issues IMHO

 

[trophywench]

Why? - they only run stuff past the lawyers if they think it's iffy and they could be sued, why bother checking anything else? LOL Won't help em sell papers if it isn't sensational these days, seems to be the general drift of the press .....

It'll only get worse if they do manage to stop em hacking people's phones, as they won't have eg Hugh Grant sometimes talks to a mysterious plummy voiced woman to do it for them ...... so everyone else in the world just gets more flak.

 

[Ellie Jones]

But what is misinformation and what isn't?

Problem is there is a link between weight and T2 diabetes and 80% of T2's will have a weight issue at diagnoses.. And often reduce the weight then need of medication reduces..

So not to make the general public aware of this would be wrong..

In most cases the media can only be accused of causing misunderstanding because they haven't clarified which type of diabetes they are talking about..

I know that education and provision of test strips etc are a problem, but I think we would be fooling ourselves if we thought that giving all diabetics Test Strips, provide this and that book, send them on this education course etc will save the NHS oodles of money...

Because it won't...

Books and test strips will be issued, and course attendance arranged and Then

In an high percentage books will be placed on the side never to be read, test strips will be put in cupboards or used by just remain an figure of a meter, nods of agreement and understanding at the course tutor will happen, then home and nothing will change..

As improvements in outcome only happens when the individual is motivated doesn't matter what tool kit you give somebody they've got to want to manage their condition,

You'll find long term diabetic who fared well over the years, starting out before we had the array of easy access to information and equipment etc where the ones who were all proactive in their control...

 

[lucy123]

I was just thinking about the Amelia Lily farce where I think there was a suggestion she was st risk of going blnd by being on the show. So many people I speak to are confused and worried I will go blind or lose a leg eventually - no matter what.

....and we must not forget to explain the difference between reversing diabetes (which we can't do) and getting our diabetes under control. When the 600 call thing hit the news I was bombarded my messages along the line its ok they have found a cure - aaargh.🙂

 

[PattiEvans]

One way of putting some pressure on might be that every time the press comes up with something patently wrong, we all message DUK asking them to refute it. It's worked in the past e.g. with the Lloyds Pharmacy advert. It was only when lots of people sent messages to DUK that the bestirred themselves to object and the advert was pulled.

 

[cherrypie]

But what is misinformation and what isn't?

Problem is there is a link between weight and T2 diabetes and 80% of T2's will have a weight issue at diagnoses.. And often reduce the weight then need of medication reduces..

So not to make the general public aware of this would be wrong..

In most cases the media can only be accused of causing misunderstanding because they haven't clarified which type of diabetes they are talking about..

I know that education and provision of test strips etc are a problem, but I think we would be fooling ourselves if we thought that giving all diabetics Test Strips, provide this and that book, send them on this education course etc will save the NHS oodles of money...

Because it won't...

Books and test strips will be issued, and course attendance arranged and Then

In an high percentage books will be placed on the side never to be read, test strips will be put in cupboards or used by just remain an figure of a meter, nods of agreement and understanding at the course tutor will happen, then home and nothing will change..

As improvements in outcome only happens when the individual is motivated doesn't matter what tool kit you give somebody they've got to want to manage their condition,

You'll find long term diabetic who fared well over the years, starting out before we had the array of easy access to information and equipment etc where the ones who were all proactive in their control...

Quite a presumption on your part Ellie. The majority of Type2 diagnosed over the last few years have not been given any tools so how do you know that they won't bother to use them????

 

[Northerner]

...As improvements in outcome only happens when the individual is motivated doesn't matter what tool kit you give somebody they've got to want to manage their condition...

Precisely, and this is part of the problem! People are sent away from surgeries believing it is their fault, they should feel guilty, they are told to eat a 'healthy diet', often without knowing what this comprises - perhaps they see the misleading 'healthy' word on processed foods and think it must be OK. People are left either confused, or frightened, or guilty, or ignorant - or perhaps told that their diabetes is 'mild' or left under the impression that they just need to take the metformin and it will be under control. Or perhaps frightened out of their skins to hear that diabetes is progressive, that their lifespans will be shortened, they will go blind, have kidney failure or lose their feet - because they are not given the tools and education to learn that there IS hope, and that diabetes can be controlled.

Of course these people aren't motivated! Contrast that with people who have attended courses, had good care from HCPs and are treated as patients rather than drains on resources.

We've had countless people come here over the past 3 years seeking information for the very reasons I've stated above. Yet even these people - who are highly-motivated, are denied the tools and education that would keep them fit and healthy with bright futures.

This is, however, not the subject of this thread. This thread is about asking the media to stop making lazy assumptions and publishing them as fact.

 

[PattiEvans]

So every time there's a poor press we must all pressure DUK through their facebook site, it's worked before, it will work again.

 

[FM001]

So every time there's a poor press we must all pressure DUK through their facebook site, it's worked before, it will work again.

We'd be fighting a losing battle with the press, some journalists are not really interested in the truth as long as the headlines and story's sell newspapers - I know because I worked for a newspaper and socialised with the journalists out of working hours.