This will ruffle some feathers, but explains a lot

[Ljc]

https://forum.diabetes.org.uk/boards/threads/the-sugar-conspiracy.58708/ — mainly the link in the first post, although the other replies are also relevant.

And as well as pushing what is now beginning to be recognised as a crackpot stance, the NHS guidelines also have separate allowances for "natural" and "added" sugar, as if one of them is somehow tagged so that the body knows to handle it differently. 🙄

You mean that they haven't work it out that sugar is sugar no matter it's source 😱
Mind you little supprises me these days.

 

[robert@fm]

You mean that they haven't work it out that sugar is sugar no matter it's source 😱

Nor, as has often been repeated on these boards, have they realised that there's no practical difference between sugar and any other carb — it doesn't have to taste sweet to do damage. 🙄

 

[@Fractis]

Right, so, we need to get in touch with researchers, explain what we think they need to do, get them to write a grant proposal to DUK, offer to help out by providing in depth knowledge of how it does work in practice, and then let the academic bods run with it. How do we do that? Who do we contact? Do DUK put out calls for specific research areas, or just wait for people to come to them? (Or JDRF, or anyone else).

Unfortunately I have no idea how these things get done ("C" grade O Level in English literature in the early 1980's was the high water mark for me academically 😱) but it's not like we are short of potential trail participants...

I guess the costs involved in any study revolve around delivering the education component, and I wonder if that could piggy back on the NHS diabetes prevention program, which has made a big deal about evidence-based behaviour change, BG testing could be fitted into the intervention/education portion of the program.

 

[Northerner]

Right, so, we need to get in touch with researchers, explain what we think they need to do, get them to write a grant proposal to DUK, offer to help out by providing in depth knowledge of how it does work in practice, and then let the academic bods run with it. How do we do that? Who do we contact? Do DUK put out calls for specific research areas, or just wait for people to come to them? (Or JDRF, or anyone else).

Hi, Hannah at Diabetes UK has sent me the following information about this issue and how research gets given the go ahead and funded:


"A really interesting thread with some very valid points. The ‘advantages’ and ‘disadvantages’ you have posted, I agree, are extremely skewed and do not really make a case for why you wouldn’t test!

In regards to self-monitoring and its relation and benefits to managing diabetes I can confirm that Diabetes UK is very much of the opinion that the cost of providing strips and helping people to maintain good glycaemic control is integral to preventing complications.

We have recently developed an information guide to support people in their difficulties with obtaining strips, as we saw a sudden rise in queries about the issue. Our response was the test-strip advocacy pack: https://www.diabetes.org.uk/Documents/Advocacy/test-strips-advocacy-pack-0613.pdf

You may find the Position Statements on Pages 3, 7 & 10 particularly useful.

In terms of the process for research, we hold applications twice a year for research proposals. These can be proposals from science students right through to professors specialised in their field.

Which projects are chosen to be funded is based on a number of things, but generally we aim to fund a variety of projects to benefit all types equally (some on T1, some on T2 etc) and to look at our three main goals – Care, Cure & Prevention.


The process:

-Applications made

-Shortlisted based on a range of criteria*

-Shortlist sent to 100s of specialists scientists in their field to question whether proposed research is scientifically viable –will the trial/research provide valid results etc.

-Best proposals are taken to panel of people living with diabetes to discuss benefits of each proposal and to prioritise them.

-The list then goes to a research panel for further review

-Final research projects are selected, with the aim to get the best out of the funding available - (this could be lots of small trials or a few big trials but the main thing is the quality and benefits they will provide).


It is summarised on our website in more details, please take a look: https://www.diabetes.org.uk/Research/Our-approach-to-research/

 

[Curly grandma]

Have been to various T2 meetings since diagnosis in October last year and each time I mention that I monitor my blood Glucose , there's the same comment "it will cause anxiety" and look at you like you are a heckler at a Political meeting!! I have learned a lot from these get togethers, but more from the forum.
Things are going well and my first HbA1c results down from 53 to 44, my weight is decreasing slowly, I don't feel I have to check my bloods as often because I am educated about diet, exercise, and what makes the results go higher. I know it's early days and things could go differently in the future but I am prepared, NOT ignorant!!! I know of two of my friends who are in denial still, months after diagnosis and they are experiencing side effects already. Both of them refuse to monitor because the nurse says so and are on medication. One of them thinks he is very clever because he just has a whole pack of Uncle Bens for his tea!!!! Ugh????

We need to be Educated!!! I was very anxious on diagnosis, but helped myself with your support. Thanks.

 

[Northerner]

Have been to various T2 meetings since diagnosis in October last year and each time I mention that I monitor my blood Glucose , there's the same comment "it will cause anxiety" and look at you like you are a heckler at a Political meeting!! I have learned a lot from these get togethers, but more from the forum.
Things are going well and my first HbA1c results down from 53 to 44, my weight is decreasing slowly, I don't feel I have to check my bloods as often because I am educated about diet, exercise, and what makes the results go higher. I know it's early days and things could go differently in the future but I am prepared, NOT ignorant!!! I know of two of my friends who are in denial still, months after diagnosis and they are experiencing side effects already. Both of them refuse to monitor because the nurse says so and are on medication. One of them thinks he is very clever because he just has a whole pack of Uncle Bens for his tea!!!! Ugh????

We need to be Educated!!! I was very anxious on diagnosis, but helped myself with your support. Thanks.

That's it exactly @Curly grandma - education and understanding remove the anxieties, or at least go a long way towards it. This 'no testing' mantra is so entrenched - why, why, why can't they have got the RIGHT advice entrenched instead? Grrr!!! 😡 Well done on your terrific success, your progress illustrates precisely what should happen to most Type 2s and improve their quality of life instead of potentially reducing it considerably.

 

[Highlander]

My wife who is type 2, was told to stop testing and that no more strips were being provided. We test meters for a company every now and again, so one day we were at the lab doing some testing and my wife had a reading of 19.5. While this was shortly after eating, this was way higher than it should be. If she was able to monitor, no way would her readings be this high. Even her HbA1c has gone up quite a bit, so the Doc increased her metformin, which then made her quite ill. In my opinion testing does help keep better control, removing strips is just down to cost and nothing else.

 

[Ljc]

If she was able to monitor, no way would her readings be this high. Even her HbA1c has gone up quite a bit, so the Doc increased her metformin, which then made her quite ill. In my opinion testing does help keep better control, removing strips is just down to cost and nothing else.

I and I believe everyone here agree with you
It's very short sighted not to prescribe meters and enough test strips for all diabetics, IMO in the long run it would not only save lives and limbs but also save the NHS lots of money.
It's a sad state of affairs when we here have to advise people to buy their own meter and strips.

 

[Sydney Bristowe]

Have been to various T2 meetings since diagnosis in October last year and each time I mention that I monitor my blood Glucose , there's the same comment "it will cause anxiety" and look at you like you are a heckler at a Political meeting!! I have learned a lot from these get togethers, but more from the forum.

I totally agree. Even at the Diabetes UK Living with Diabetes event I got some very funny looks around the table when I was testing and one person asked me why i was testing so much - I'd had my diagnosis for about 4 weeks at this point and had self funded the Codefree while I was waiting for a response from my DN about if they would fund a meter for me. I found out that day that Banana's are no good for my levels!

 

[Northerner]

I totally agree. Even at the Diabetes UK Living with Diabetes event I got some very funny looks around the table when I was testing and one person asked me why i was testing so much - I'd had my diagnosis for about 4 weeks at this point and had self funded the Codefree while I was waiting for a response from my DN about if they would fund a meter for me. I found out that day that Banana's are no good for my levels!

Hope you educated them Sydney! 🙂

 

[Ralph-YK]

The DSN at the Diabetes course/info thing was saying that she supports T2's testing. Unforeturnatley, she works too far away from where I live for me to get assigned to her.

 

[Matt Cycle]

Just playing devil's advocate here as I did some rough calculations and with a diabetic population in the UK of 4 million (all types), each testing 4 times a day with an average strip price of £20 for 50 would work out at £2.3 billion (yes, billion) per year in strips alone. 😱

Obviously not really sustainable in spite of the cost of complications and all the rest of it - that's probably seen as a cost that may not happen and someone else's problem.

I don't agree with it but you can see why they get twitchy at handing them out.

 

[rustee2011]

A real shame this good old country of ours don't want to invest in health...but find plenty of cash for arms and war......

 

[Northerner]

Just playing devil's advocate here as I did some rough calculations and with a diabetic population in the UK of 4 million (all types), each testing 4 times a day with an average strip price of £20 for 50 would work out at £2.3 billion (yes, billion) per year in strips alone. 😱

Obviously not really sustainable in spite of the cost of complications and all the rest of it - that's probably seen as a cost that may not happen and someone else's problem.

I don't agree with it but you can see why they get twitchy at handing them out.

I did once see some figures for the actual breakdown of where the £10bn NHS annual spend on diabetes goes - I'll try and dig them out tomorrow, see if DUK can help 🙂 I know that strips are a fraction of the (mostly preventable) complication treatments.

 

[Northerner]

A real shame this good old country of ours don't want to invest in health...but find plenty of cash for arms and war......

Indeed - how much do they want to pay for Trident renewal? Something that is actually worthless?

 

[Matt Cycle]

I can't see anything changing. There would be a period where strips were being issued to all at a huge cost but also still treating complications at a huge cost - double whammy. You wouldn't see any benefit from testing in terms of reduced complications for some period of time in the meantime the government has probably changed. It's all about the short term for them.

 

[Northerner]

I can't see anything changing. There would be a period where strips were being issued to all at a huge cost but also still treating complications at a huge cost - double whammy. You wouldn't see any benefit from testing in terms of reduced complications for some period of time in the meantime the government has probably changed. It's all about the short term for them.

Indeed, it's why politics needs to be taken out of the NHS so they can plan long-term, not on an election cycle (or crisis-beg-crisis, as it seems to be these days )

 

[Sydney Bristowe]

Indeed - how much do they want to pay for Trident renewal? Something that is actually worthless?

Trident renewal is essentially keeping the economy in the North West alive. It directly sustains 8,000 jobs with a further 10 jobs in the supply chain created for each direct job. Barrow would disappear without it and places like Preston and Lancaster would also massively suffer. It may be something that is seen as morally wrong by many and it's easy to make it a political scapegoat for the shortcomings of the current government on the NHS, but it is certainly not worthless. The money spent on it would never ever be routed to the NHS if it were cancelled because it would have to be used to shore up the economy

I do agree completely that politics should be removed from the NHS though. This government is actively trying to cripple a service that is the envy of the world. I'm so proud of the NHS and it makes me sad to see how it is being destroyed by distorted reporting and mis management at the most senior levels.

 

[Eirian Jones]

Has anyone bought test strips?

The manufactures hold us (either individual purchaser or tax payer) to rand some. NHS budgets can't pay for test strips for all?

Education is an interesting point, the take up of Expert (Type 2 Structured Education) is quite poor, although there are many complex reasons for this, so what makes anyone so sure people are going to be educated in interpreting the results?

The vast majority on non hypo inducing mess are at an early stage of their "Diabetes journey" so probably still have a great deal of complacency and would not show an interest in maintaining their health.

My solution is to give strips to those who show commitment to improving their health and Doctors or DSN's make that judgement.

 

[Superheavy]

Hi Eirian, I was just talking to a friend of mine who is a GP and he was saying that they may be introducing a video course version of those expert courses, I'm hoping he'll send me a link so I can report back. Luckily enough, I get my strips from the GP, but they have suggested that as my levels are stable, that I don't need to test quite so regularly. I've never bought strips, but if I were I'd probably switch to the one with the cheapest strips. If everyone did that, the other manufacturers would soon be bringing their prices down.