What's Being Done?

[SockFiddler]

So there's goodness-knows how many people on this forum alone, more or less all saying the NHS (NICE) guidelines are wrong in that:

- T2's need access to BG testing facilities
- Obesity doesn't specifically cause diabetes
-Metformin is miserable
- Carbs are the enemy.
- The Eatwell Plate is wrong.
- NHS diabetes education is outdated.

There seems to be no standard approach when it comes to how the NHS treats patients; some are offered education and some are not. Some are given meters (but not test strips) some are not. Some are given counselling and information and some are not.

All this backed by significant evidence to boot.

Is there a lobbying arm somewhere that is pushing the DoH to look again at diabetes management in the UK? To reconsider recent research and studies and at least change the guidance on the NHS website so that low-carb diets aren't dismissed as faddy and alternative?

Almost without exception, we've all learned that the NHS isn't serving our needs. But what's being done about it?

Found this link: https://www.diabetes.org.uk/Get_involved/Campaigning/Our-work-in-Parliament/

Pondering it.

 

[Rachox]

I agree with all except one small point. I found Metformin miserable for the first week (I spent an inordinate amount of time in the loo!), but I'm tolerating it without side effects now. I believe it is helping with my weight loss too.
My education was borderline, the nurse did talk about low, medium and high carb foods and did suggest we only ate low ones and medium ones occasionally, but she drew the line at giving me a specific amount of carbs/day when I asked!
She and the GP that I saw on diagnosis (not my usual one as I was fitted in at short notice) didn't advocate self monitoring but were happy for me to do it if I wanted. I'm going to ask my usual GP about it in a couple of weeks at my first review, hopefully with an improved HbA1c to prove low carb and self monitoring works

 

[Squire Fulwood]

The Public Health Collaboration is a group of doctors inspired by this web site to spread the word. Dr David Unwin, a significant member of that group was invited to give evidence to the All Party Parliamentary Group on Health and he had an hour to himself since Diabetes UK didn't turn up.

PHCUK run conferences which are becoming popular with the health professionals and this year they ran workshops for the professionals as well as two days of lectures for the rest of us.

The Collaboration runs on donations and only one member takes a salary and that is Sam Feltham the Director. If you donate you get wristbands and/or T shirts etc.

 

[Squire Fulwood]

Found this link: https://www.diabetes.org.uk/Get_involved/Campaigning/Our-work-in-Parliament/

Pondering it.

I think you can stop pondering now since Diabetes UK have not been helpful in the past. They have only just released a policy statement grudgingly agreeing that low carb can be helpful for some T2 diabetics.

As I said in my previous post, Dr Elizabeth Robertson their Research Director didn't even turn up to the session with the All Party Parliamentary Group on Health.

http://www.fhf.org.uk/files/index2.php?id=148

 

[AM1874]

So there's goodness-knows how many people on this forum alone, more or less all saying the NHS (NICE) guidelines are wrong in that:
- T2's need access to BG testing facilities
- Obesity doesn't specifically cause diabetes
- Metformin is miserable
- Carbs are the enemy.
- The Eatwell Plate is wrong.
- NHS diabetes education is outdated.
There seems to be no standard approach when it comes to how the NHS treats patients; some are offered education and some are not. Some are given meters (but not test strips) some are not. Some are given counselling and information and some are not. All this backed by significant evidence to boot.
Is there a lobbying arm somewhere that is pushing the DoH to look again at diabetes management in the UK? To reconsider recent research and studies and at least change the guidance on the NHS website so that low-carb diets aren't dismissed as faddy and alternative?
Almost without exception, we've all learned that the NHS isn't serving our needs. But what's being done about it?
Found this link: https://www.diabetes.org.uk/Get_involved/Campaigning/Our-work-in-Parliament/
Pondering it.

Hi @SockFiddler ..
I agree with your overview of this sorry situation and I have previously raised similar issues re: the NHS treatment regime. I am also interested in the work of the lobby group that you have identified but I have to say that I think this is an uphill battle that does not appear to be making much headway. Consider the following ..

1. A similar thread from 2013 following the same discussion and raising the same points
2. A more recent thread calling for a petition to parliament
3. A call for a cross-party review which gathered 95% support on this forum
4. A thread about the position and power of the National Obesity Foundation

I believe that the underlying problem to all of this is that there are too many vested interests in perpetuating the status quo .. and, if I am honest, I doubt that this can be overcome on the basis of improvements or benefits to diabetic patients. I have racked my brains for months and, apart from the NHS and NICE, I am still unable to come up with a single instance of an established professional organisation that deals with a critical issue in its remit with such a degree of outdated thinking and practice, inconsistency and ineptitude.

Having said all of that, I wish you well in your quest for clarification and, hopefully, action .. and I would be more than happy to move forward from my current position if / when I feel that this might be of some benefit. Until then, however, I will carry on with my LCHF lifestyle, exercise and BG testing and retain my current stance when dealing with my Doc, Nursie and HCPs, namely:

# Listen
# Nod
# Smile and say thankyou
# Ignore

 

[SockFiddler]

Thanks, @Squire Fulwood for your info: The helpfulness of Diabetes UK was exactly what I was pondering - the pages I read seem to be fairly myopic. Incidentally, the conversation I had with someone on the helpline the day after I was diagnosed now stands out as gloriously awful, too. (Advised not to test, to follow NHS advice, to not radically change diet, that Metformin will save the world, so on, so forth)

In 2013, there would have been no obligation for a debate to take place had enough signatures been gathered on a .gov.uk petition. These days, if we were to gather enough signatures to push the petition over that threshold (100,000 - see link 1) If that were to happen in conjunction with, say, Dr Unwin (or someone else) having gathered evidence from CCGs, GP practices and patients around the country - as well anecdotal evidence gathered from here (there's a questionnaire I had to fill in which could help, as well as data that's kept about the 10 Week Program) surely a powerful, organised lobbying group could be created, talking with a single voice through Dr Unwin (if he's still game)?

Thanks to you, too, @AM1874 for the various threads from the past. 515 signatories is... well, it's not going to change the world, but it doesn't mean it can't be tried again. What you describe as a typical appointment with the NHS is a waste of your time and theirs. And if something's wasting NHS time, it's wasting NHS money.

My background (before this and issues with my son) struck was to gather evidence and present it to statutory bodies so that they'd see what services had to change and be able to target their spending better to enable better outcomes. Fine, I used to do that just for one city (though a group of us lobbied nationally twice - and won twice), but this is such a no-brainer: there's so much evidence here and elsewhere, and there's so much money being wasted on pointless, box-ticking appointments.

There is no medical miracle here; people who control, even reverse, their illness using diet are doing something that is both logical and well understood. Their long term outcomes are significantly improved, which saves the NHS significant amounts of money - and all it takes is some test strips and good advice.

If the NHS was the source of this good advice, it wouldn't then rely upon people stumbling upon this website and then having the courage and time to join in. I really think it would just take a small group of campaigners with a very loud, experienced mouthpiece: I'm going to see if the marvellous Dr David Unwin is still interested.


1 = https://petition.parliament.uk/help

 

[SockFiddler]

Incidentally, my impressions are also - currently - fairly myopic given that I'm a T2 and have only been active here for 2 weeks. I have really no understanding yet of the experiences of other types of diabetics have re: NHS, but if anyone with any other type has experiences or issues with their advice (in terms of broad guidance and policy) please do post it here. I'm eager to learn what the problems are.

Thanks

 

[Squire Fulwood]

If the NHS was the source of this good advice, it wouldn't then rely upon people stumbling upon this website and then having the courage and time to join in. I really think it would just take a small group of campaigners with a very loud, experienced mouthpiece: I'm going to see if the marvellous Dr David Unwin is still interested.


1 = https://petition.parliament.uk/help

Dr David Unwin (or @Southport GP on this site) is no longer alone and although no-one could be more helpful than him it might be worth you addressing his associates as well.

https://phcuk.org/board/

 

[Squire Fulwood]

I remembered an announcement which said that the petitions facility had closed so I Googled it and got this.

"
09 June 2017
All petitions had to close on 3 May because of the General Election. The site will remain closed until we have a new Petitions Committee. We’ll keep you updated about when the site will reopen for new petitions and signatures after the election.



Why is the petitions site closed?
The petitions site is closed because the General Election meant that Parliament had to be dissolved. The petitions website is part of the official work of Parliament, so it had to stop too.

When can I start a new petition?
The petitions site will open again as soon as the House of Commons sets up a new Petitions Committee. We don't know exactly when that will happen. You can follow us on Twitter @HoCPetitions for updates, or check back on the petitions site for news if you prefer."

 

[Squire Fulwood]

Incidentally, the conversation I had with someone on the helpline the day after I was diagnosed now stands out as gloriously awful, too. (Advised not to test, to follow NHS advice, to not radically change diet, that Metformin will save the world, so on, so forth)

LoLoLol, You forgot the bit where they say "So send us some money".

 

[SockFiddler]

@Squire Fulwood: I just wrote to PHC

It's a bummer about the petitions site closing, though (I could be wrong) doesn't May have a diagnosis of T2D? Wouldn't this, therefore, be something she cares about? (Trying to remain politically neutral here!)

My bad, she has Type 1: http://www.telegraph.co.uk/news/201...-day-theresa-may-reveals-talks-openly-living/

 

[Squire Fulwood]

@Squire Fulwood: I just wrote to PHC

Great, we will all be interested in the result.

 

[Bluetit1802]

There seems to be no standard approach when it comes to how the NHS treats patients; some are offered education and some are not. Some are given meters (but not test strips) some are not. Some are given counselling and information and some are not.

NICE has recommended care pathways in place that all GPs should be following. These are reviewed and updated regularly and are available on-line.

I have read recently a report about standardising care throughout the country. I cannot remember where I read it, nor who published it. Possibly NICE, or NHS England, or the Department of Health. It stated that it is a postcode lottery. Whilst many Trusts comply with the recommended standards of care laid down by NICE, some are not. This standard of care relates to Primary Care and also hospital care. It seems this issue is being addressed.

I can say that my Primary Care Trust follows these NICE guidelines to the letter as far as Type 2 is concerned. I can't speak for any other types, nor can I speak for any hospital care.

 

[Oldvatr]

Hi @SockFiddler ..
I agree with your overview of this sorry situation and I have previously raised similar issues re: the NHS treatment regime. I am also interested in the work of the lobby group that you have identified but I have to say that I think this is an uphill battle that does not appear to be making much headway. Consider the following ..

1. A similar thread from 2013 following the same discussion and raising the same points
2. A more recent thread calling for a petition to parliament
3. A call for a cross-party review which gathered 95% support on this forum
4. A thread about the position and power of the National Obesity Foundation

I believe that the underlying problem to all of this is that there are too many vested interests in perpetuating the status quo .. and, if I am honest, I doubt that this can be overcome on the basis of improvements or benefits to diabetic patients. I have racked my brains for months and, apart from the NHS and NICE, I am still unable to come up with a single instance of an established professional organisation that deals with a critical issue in its remit with such a degree of outdated thinking and practice, inconsistency and ineptitude.

Having said all of that, I wish you well in your quest for clarification and, hopefully, action .. and I would be more than happy to move forward from my current position if / when I feel that this might be of some benefit. Until then, however, I will carry on with my LCHF lifestyle, exercise and BG testing and retain my current stance when dealing with my Doc, Nursie and HCPs, namely:

# Listen
# Nod
# Smile and say thankyou
# Ignore

I am surprised that you did not refer to the recent info posted on the Forum regarding the sponsors behind Diabetes,org, and their funding, A similar list appears when looking at who supports NICE and PHE. Many older drugs trials were paid for by the very same drug companies that were being tested, and surprise, surprise these all have exaggerated support for the drug use. The statistical analysis methods used by NICE and the media have been proven to have been suspect, and have been withdrawn for use by anyone except NICE, who continue to use it for justification of their claims.

While these remain in effect then there is no possibility of the NHS even considering making changes to what info they give to our HCP's, so these vested interests are what are holding us back.

The media is starting to give our message some airtime and the door is open a crack. But the Big Pharma / Big Agric lobby is very strong, and money talks.

Edit to add: If you want a good laugh / cry, then read the following:
http://blog.bitingfit.co.uk/?p=183
It is a Blog, so is only a person's point of view, and is not proper evidence, but is interesting. I know for a fact that DUK is in bed with ASDA, and their 2015 Conference was sponsored by Coca Cola. These details were shown on their website, and printed on their literature at the time. No mention of it on their website now,.

 

[Squire Fulwood]

I got my monthly email from PHCUK this month and in it was a link to some infographics prepared by David Unwin. It just occurred to me that people who do not subscribe may not be aware of them. They make sugar very clear.

Dr Unwin just wants people who wish to use them to do so. They are free and since they are offered for download I am pretty sure there are no copyright issues.

https://phcuk.org/sugar/

 

[MikeTurin]

While these remain in effect then there is no possibility of the NHS even considering making changes to what info they give to our HCP's, so these vested interests are what are holding us back.

I know for a fact that DUK is in bed with ASDA, and their 2015 Conference was sponsored by Coca Cola. These details were shown on their website, and printed on their literature at the time. No mention of it on their website now,.

But In Italy here we haven't ASDA or NHS, and for sure we haven't an organization like DUK (unfortunately I may add) but from what I could see the same guidelines are explained here.

These are sites of the italian agricoltural lobbies/unions: http://www.confagricoltura.it/eng/confagricoltura/about-us_1.php http://www.coldiretti.it/Pagine/default.aspx#

They're actually against the nutrition fact semaphore: http://www.coldiretti.it/News/Pagine/275---5-Aprile-2017.aspx because good Italian food like say olive oil or cheese is fatty and low in carbohydrates. (The site is all in Italian, unfortunately) Anyway acricoltural lobbies are quite strong in Italy and are making campaigns to promote food that is ideal for a lchf diet. Parmigiano Reggiano, Grana Padano, Bresaola, Ricotta, Aceto Balsamico di Modena, Olive di Cerignola o Taggiasche,...

 

[Oldvatr]

But In Italy here we haven't ASDA or NHS, and for sure we haven't an organization like DUK (unfortunately I may add) but from what I could see the same guidelines are explained here.

These are sites of the italian agricoltural lobbies/unions: http://www.confagricoltura.it/eng/confagricoltura/about-us_1.php http://www.coldiretti.it/Pagine/default.aspx#

They're actually against the nutrition fact semaphore: http://www.coldiretti.it/News/Pagine/275---5-Aprile-2017.aspx because good Italian food like say olive oil or cheese is fatty and low in carbohydrates. (The site is all in Italian, unfortunately) Anyway acricoltural lobbies are quite strong in Italy and are making campaigns to promote food that is ideal for a lchf diet. Parmigiano Reggiano, Grana Padano, Bresaola, Ricotta, Aceto Balsamico di Modena, Olive di Cerignola o Taggiasche,...

Found this nugget:
http://aemmedi.it/wp-content/uploads/2016/09/2007_AMD_SID_italian_standards_diabetes_mellitus.pdf

Seems the diet recommended is low fat, rich carbs, with GI control recommended See Page 46 onward of this report.

 

[tim2000s]

I'm going to tag @DCUKMod on this one, as I am aware that this site is using the low carb program to produce peer reviewed, population based (or at least a large enough sample size to apply to the population) evidence that can be used by NICE in evaluating the possible approaches for new guidelines.

One of the biggest issues is that NICE undertakes a review of evidence when it puts together the guidance for HCPs, and until recently, the amount of good quality, properly collected evidence available backing up the reduced carbs, blood testing approach was pretty much none. That is changing and should have more impact on informing the next set.

 

[Oldvatr]

I'm going to tag @DCUKMod on this one, as I am aware that this site is using the low carb program to produce peer reviewed, population based (or at least a large enough sample size to apply to the population) evidence that can be used by NICE in evaluating the possible approaches for new guidelines.

One of the biggest issues is that NICE undertakes a review of evidence when it puts together the guidance for HCPs, and until recently, the amount of good quality, properly collected evidence available backing up the reduced carbs, blood testing approach was pretty much none. That is changing and should have more impact on informing the next set.

Actually NICE uses a commercial outfit (TREND Data Ltd) to do this analysis, and prepare the report for them to sign off to. It is Trend who also do similar wotk for DVLA.

 

[Squire Fulwood]

Found this nugget:
http://aemmedi.it/wp-content/uploads/2016/09/2007_AMD_SID_italian_standards_diabetes_mellitus.pdf

Seems the diet recommended is low fat, rich carbs, with GI control recommended See Page 46 onward of this report.

A nugget indeed, how long was it buried?