NHS Advice on diet

Bellx15 said:

Just thinking - I have had some informal exchanges with Jonathan Amos (BBC Science Correspondent). He seems like a very clear-headed and reasonable guy. Maybe I will stick my neck out and ask him what he thinks might be the best way to go about this.

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certainly can't hurt

Maryx

Have clicked and signed up

Bellx15 said:

Just thinking - I have had some informal exchanges with Jonathan Amos (BBC Science Correspondent). He seems like a very clear-headed and reasonable guy. Maybe I will stick my neck out and ask him what he thinks might be the best way to go about this.

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Go for it Bellx.

lightwolfe said:

Hi Guys
Ive posted this on its own thread but i think it fits here also.
This is a petition to improve the basic knowledge of the people diabetics entrust there lives too when ever they have severe issues that require treatment in A&E or if they ever need an ambulance.

http://epetitions.direct.gov.uk/petitions/40515

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I'd like to suggest that you also post this link in your original thread about the 999 call as people are still commenting on the thread.

I wish I could sign the petition, but I'm not in the UK.

Over the years, I've written to TV, newspapers and everyone i can think of. Our point of view on diet isn't orthodox, so no-one dare touch it. They have even tried to ridicule Briffa on air. they didn't succeed, but getting fixed ideas moved is VERY HARD. Once something is in a text book, whether it's based on any real science, or in anyway valid, It's FACT. It doesn't matter that it doesn't work. Failure is the patients' fault.
Hana

I work in public relations so my entire job is getting the media to write or broadcast about things I want them to (or more precisely, my clients do).

I can't claim to be a total expert, but below is some free professional advice.

1. For a story to be run by the media, it needs to be CREDIBLE, INTERESTING and RELEVANT. You also need TIMING.

2. CREDIBILITY - this is where you're going to have problems. A web forum of people who believe the NHS offers the wrong dietary advice is NOT a credible source. The NHS will be assumed to be competent and scientific documentation validating its methodology. This is a fair assessment. So in the first instance, you need a credible, recognised body with research that challenges the orthodoxy.

3. More on credibility - an email from a concerned person isn't going to cut it. Production teams on papers field hundreds of emails and calls every day while working on extremely tight deadlines. They will also very rarely respond to any of these that don't immediately interest them (and we'll get to that in a moment), even when this contact comes from professional organisations. They almost certainly won't respond to members of the public.

4. INTERESTING - you need to ask yourself, why is this story interesting to anyone but ourselves? Honestly, why should anyone who doesn't have diabetes even remotely care that a few people don't think the NHS provides the right dietary advice? Sorry, but that's the tough question you need to ask before even thinking of going to the media. Diabetes only affects 2.5m people in Britain and is regarded as largely a self-inflicted condition. You'll need to get over those two massive hurdles.

5. Facts. You're going to need them. Can you prove the NHS diet is wrong? Can you extrapolate the cost to the NHS of not changing the dietary advice vs. changing it? Can you provide real world case studies of people who've done something different to the NHS diet and had a much better outcome that can be medically verified? Again, you need to have proof. Simply a bunch of people saying "I've lost lots of weight on a non-NHS diet" isn't going to cut it. You need interesting, 'everyman' people who have had bad A1Cs and cholesterol clearly marked and defined on their records while also having a food log, and then a clear distinction of before and after. These people need to be reasonably photogenic (for broadcast), articulate and representative of the general population.

6. You need an expert spokesperson. You need a genuine scientific figure prepared to front the campaign and speak on your behalf. Doesn't need to be a celebrity.

7. RELEVANCE. Why should this story be covered now? I'd suggest doing things near to National Diabetes Day would be a step in the right direction. Or releasing information at the same time the NHS release figures on the cost of diabetes. Producers generally won't see diabetes diet as an issue worth covering when they've 500 other people all pitching other stories, so you need something that they'll be thinking of at the time.

8. TIMING - You need to email and follow up with calls at sensible times. Each TV show has a different time for its planning meeting. Don't call when they're in the middle of producing, you want to get to them about an hour before the planning meeting so your idea is still fresh in their mind.

There's your starter for 10 anyway...good luck...

Bellx15 said:

I haven't found any mention of this yet, although I expect there will be some, but here goes -

Has there been any discussion of how this forum might approach television channels (e.g., CH4, BBC4) about looking into the ridiculously inappropriate advice emanating from the NHS? I can envisage quite a scandal stirring up.

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There might be an opportunity now: the 13 year Look AHEAD study, which was supposed to study the effectiveness of an NHS style diet on T2 diabetics and obese people has been abandoned after 11 years (and $200m), after the mortality rate in the intervention group was the same as (or worse than) that in the control group. Proof positive that the standard NHS diet + exercise regime is at best completely ineffective at improving cardiovascular outcomes, and is quite possibly more damaging than doing nothing.

viewtopic.php?f=25&t=34128

Deus XM has encapsulated all mythoughts and reservations - but with far more deatailed and knowledge and experience.

I have often wondered if the fact that T2 is largely managed in the Local Practice - and not even by GPs has ensured that there is little movement in the approach to T2s and the dietary advice offered.

When I was referred to the hospital diabetes clinic by my opthalmologist - as I was getting nowhere with the Practic I saw a couple of consultants and a dr who was there on a visiting fellowship. Because the evidence of my own testing enabled him to find an effective way to treat my problem he had to re-think his position on testing.

If consultants etc only ever see the most complicated and difficult or maybe non-compliant T2 patients there is no incentive and littlwe opportunity for them to consider the condition overall or to re-consider the conventional advice.

I doubt very much if there is any useful feedback from the GP surgeries .

Unbeliever said:

Deus XM has encapsulated all mythoughts and reservations - but with far more deatailed and knowledge and experience.

I have often wondered if the fact that T2 is largely managed in the Local Practice - and not even by GPs has ensured that there is little movement in the approach to T2s and the dietary advice offered.

When I was referred to the hospital diabetes clinic by my opthalmologist - as I was getting nowhere with the Practic I saw a couple of consultants and a dr who was there on a visiting fellowship. Because the evidence of my own testing enabled him to find an effective way to treat my problem he had to re-think his position on testing.

If consultants etc only ever see the most complicated and difficult or maybe non-compliant T2 patients there is no incentive and littlwe opportunity for them to consider the condition overall or to re-consider the conventional advice.

I doubt very much if there is any useful feedback from the GP surgeries .

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Sadly, you could be sooooooo right there. My GP practice website boasts a list of 'clinics' it holds, everything from 'diabetes clinic to menopause clinic'. Looks good on the website but in practice - nah! I was diagnosed in August by a GP locum, I then saw the Diabetes Nurse who simply gave me a prescription and told me she'd see me in 3 months. I've had no information at all about my diagnostic blood tests, no info was given me about the diabetes clinic, I have no clue whether I'm supposed to attend it or not, and I've not been referred to any hospital consultant. But that seems to be the case for most things now - GPs guessing what's wrong and making diagnoses without referring to specialists. Fine if they happen to be accurate and know about the condition but what if they're not? Most GPs know a little about a lot of conditions and specialise in one particular area. One of my old GPs specialised in gynae and obstetrics but wasn't good for much else. I was borderline diabetic 20+ years ago when I was on his list, yet he never followed up on it. Brilliant when I was pregnant - but anything else - forget it.

So obviously all the diabetologists in hospitals are happily thinking we're all doing fine out here. I bet they don't even know how many of us are being diagnosed every day. Scary isn't it?

Bellx15 said:

[
I just Googled the study, though, and the first thing I looked at seemed to be casting a positive light on it.

http://www.theheart.org/article/1015367.do

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That report was on the previous 4 year stage of the study which ended~2008 (4 years ago) and even then they seemto be saying that the gains were starting to shrink!