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Something MUST be done!!!!



Yes that was my understanding of the OP's message and that is why a mixture of type 1's and 2's have responded. IMHO nothing could be more counter-productive than to have divisions between type's when compiling a statement to be sent to the relevant body's involved in our care.
 

"You lot"??!! What the heck is that remark all about, I haven't seen any posts on this thread that would warrant that. Please explain who "you lot" actually are.

Everyone on this thread has spoken reasonably about issues that concern us all. Can you tell me what your problem is with the "eat to your meter" advice? There has been plenty of posts on this thread where the different strategies employed by different people have been mentioned and most definitely not sneered at, nor pointlessly argued with. Maybe this is because generally we all have each others welfare at heart, many of us are facing the same problems and know from our OWN experience what needs to be done to help rectify the situation. Yes, NEEDS. MUST BE DONE. IN BIG CAPITALS.

How can the same problems still exist at the same levels if people are educated in managing their own health, am I missing something? Lower bg levels mean less meds and less complications..or am I missing something?
The current NHS strategy is that we as type 2's don't need to test and that we should not even consider a reduction in the very foods that are known to cause higher bg's. Nobody here suggested LC or VLC for the masses but carb reduction should be included in the advice given out at diagnosis..generally it isn't. This leads to higher bg's, more meds, possible depression and confusion.

I am completely sick and tired of seeing petty..yes, petty...arguments just for the sake of it. "Individualism and an array of different mantras"..are you serious? They can't even get it together to deal with what they have got at the moment, do you honestly think they are going to have the time or inclination to sit down and work out personal plans for each diabetic that walks through the door? Of course I am aware that some have HCP's who are really supportive of an individuals choice as long as it has results and that is great.

Those that want to be proactive, want a meter to check their levels and adjust their diet accordingly. Those who low carb use their meters, so does Sid on portion control, so do I (thanks to the generosity of others) a "loweER carber, who has halved my levles of carbs to those I used to eat. I eat according to my meter and am much better for it. So do the majority of people on this forum I should think. their bg's and Hba1c's speak for themselves.

The vast majority also say that lowering carb levels to whatever suits them personally has had a good impact on their health.

This isn't just about a mantra that is meaningless, this is about something that will empower us to look after our diabetes and our broader health. It is not something to be shrugged off and taken lightly. Neither is dietary advice, whatever side of the carb camp one happens to be on. I have yet to see somebody advise a newbie to carry on eating the same level of carbs as they did at diagnosis. Would you recommend this path Jo or perhaps tell them that they should eat whatever they want regardless of what the meter tells them? Most docs have a maximum of ten minutes per consultation so I don't seeing them working out a tailor made plan for each individual. Based on what? Their weight, lifestyle..what exactly? Maybe there should be a master plan.

The current way isn't working as numbers and complications are increasing. The current way needs to change because people are suffering. Plain and simple. Eating to your meter can only help to reduce those numbers and possibly avoid complications.

If you have a better plan Jo or anyone else who objects to this, I would really like to hear your ideas on how to improve the situation. Specific ideas for a newly diagnosed newbie who is scared, confused, angry, who can't process much information and who hasn't got the luxury of a long appt with the doc.

Thank you.
 
Thinking about what Viv said on Page 3...
"And finally - any legal eagles out there? If a diabetic had had an amputation caused by the NHS giving incorrect dietary advice, could they sue the NHS for GBH?"

This could be the key to the reluctance to change maybe??
If the NHS guidelines suddenly change and they say that the advice that they have been issuing for the last xxx number of years has been incorrect and they 'got it wrong' then how many lawsuits could that result in? As I'm sure all these folks who have believed their Doctors and Nurses, following their advice by the letter would not be best pleased to know that any complications they had could have maybe been prevented!!

On this score I think the change has got to be gradual so as the 'person on the street' as such doesn't notice the change in guidelines perhaps?

Just a thought.

Whatever, I'm backing you all the way. I'm fortunate at the moment that I have some strips each month as a Type 2. But my Doctor says test twice a week, that's fine and the figures are okay as long as they are in single figures :!: My Nurse at the same practice says test twice a day and supports me in trying to keep my figures as low as I can. :thumbup:

Regards
Angie
 
The problem with diabetes, like many other condtions, it is affected by our overall well being, mental state and so on. Who hasnt seen higher readings when they are stressed or anxious. Then there are othef factors such as how different reactions can be between one person and another to identical situations. All of this leads inevitably to wide differences of opinion betwen medical practitioners frequently giving conflicting advice. Nowhere is this more pronounced than on the subject of diet betwen proponents of high and low carb regimes.

I am maybe lucky in having someone who says to me "look this isnt an exact science and clinical care is at best subjective based on the practitioners past observation and the patients own interests and instincts. The reality is that no one can give any one the right advice, what they can give are choices and this is where some fall down. Some doctors feel that overtesting can make people unduly pre-occupied with just one aspect while other people might use regular testing to try and avoid changing lifestyle.

One person might argue that it is ok to use available medication and control to avoid a lifestyle change and live maybe a shorter but more contented life, another eight quite validly say that they need help to manage/change their lifestyle in order to live longer. I think that Doctors should give patients the choice about how they manage their condition and to support the route they choose.

However in the current climate I fear that many practices are more concerned about expenditure that in supporting patients. I imagine most of us have fought hard at times to get the things we need. I for example overcame embarrassment to secure medication for ED and yet twice in the last four years the medication has been reduced. The latest information I have from my surgery is that "The department of health advises doctors that one treatment a week will be appropriate for most patients with ED" - so now they seek to legislate on our relationships as well. :roll:
 


Bl**dy well said Ladybird!!!!
 
Jopar, if you were able to interpret anything I said on my first post on this thread to mean that I am saying Type 1s should lose their pumps and go low-carb, then I'm sorry my words were so imprecise that they could be interpreted in that way. I apologise for the confusion I have created.

I think you know in your heart-of-hearts that I would never advocate that and indeed that I know it is not possible. I still produce insulin. I know perfectly well, from friends over the years as well as this forum, that Type 1s don't.

Nevertheless, on this forum a few months ago there was a Type 1 whose GP had told her she was testing too much and she should not test more than 4 times daily, if that. I can't remember who it was, or even exactly when, but it was a comment I'll never forget. It sounded to me like attempted murder.

Everybody - if the Public Accounts Committee is meeting to discuss the care of adult diabetics within the NHS, you can be very sure that someone on that committee will be looking to save money across the board - regardless of need or Type. Thanks to Paul, we have been given a brief window in which to get our opinions in front of that committee. We need to start thinking about the punchiest way of saying it, not wasting all our creative energy in bickering amongst ourselves.

I don't know what the greatest problem is with NHS care of Type 1s; that's for the Type 1s to tell us.

For Type 2s: I think that NHS care of Type 2s would be better if they a) gave more options on dietary methods of controlling Type 2; and b) gave better education in self managing our diabetes by investing in the proper education of newly-diagnosed Type 2s, including the correct use of prescribed meters and test strips. This education should include a brief introduction to proteins, fats and carbohydrates, such as used to be given in 'O' level Biology.

Saving money on strips, meters and education is a short-term measure that will result in a frightening increase in disability among Type 2s, and consequent expense to the NHS, in the near future.

I would also like to see more investment in the education in diabetes of HCPs, both those in general care fields and particularly within the "specialist" field. Both types of HCPs are sometimes sadly lacking in their basic knowledge of Type 2 diabetes and its medications. We have plenty of anecdotal evidence for that on here!

I think I'm going to re-work those last 3 paras a bit and post it to all the committee members.

Viv 8)
 
Actually just re-read your post again.

jopar said:
my insulin pump back
Click to expand...

I don't think anyone is remotely suggesting insulin pumps should be taken away from T1's like yourself. Anyway unless you went private I thought we the tax payers bought you that insulin pump Jo at the cost of somewhere between £1000 and £3000 and of course on top of that there are the monthly running costs etc. I'd be over the moon to see everyone who could benefit from a pump get one as they are marvellous devices and make lives far easier or so I'm led to belive. You really are quite lucky to get one as only around 1 in 1000 diabetics seem to get one in the UK http://www.diabetes.co.uk/insulin/Getting-an-insulin-pump.html.

About the same ratio of T2's who get a worthwhile supply of strips I would guess.

Oh and +100 Ladybird :clap:
 

I agree Viv. ... nearly. I agree entirely with

a) gave more options on dietary methods of controlling Type 2;
Click to expand...

and agree with the sentiment in

b) gave better education in self managing our diabetes by investing in the proper education of newly-diagnosed Type 2s, including the correct use of prescribed meters and test strips
Click to expand...

On b) I think it should go along the lines of the petition and only advocate strips for as long as the diabetic is trying. Maybe mention something along the lines of the black market in strips can be avoided if you cant get new ones unless you bring the used ones back.

Secondly I don't think it should over emphasise the science bit too much but I'm not sure what to replace it with. If you do what I or Grazer do and mention restricting actual food stuffs that are currently assumed "good" then it could freak them out. Somehow what needs to broken is the current dogma that an ideal diet for a T2 is the same as the rest of the population.
 
Going to stick my neck out here, be kind to me on this folks:

I think part of the problem, as I have encountered it, is the reluctance of my HCP's and others to be blunt and tell it like it is. I dont want to be offered the gentle 'treat me with kid gloves and like a stupid person' approach. I want my HCP's to tell me the truth. However unpalatable that is.

And give me straight choices. Just the way they do with a cancer diagnosis. Then give me the tools to implement that choice.

I find the practice of HCPs I have met assuming that I am one of the ones who will not change, or will ignore my condition, or am incapable of understanding the biology of my body, to be insulting.

And also their assumption that they know best and how they ignore my logical questions and decisions. So I think being respected by the HCPs is an important part of this.
 

Lucy I agree with you totally and other low carb members have said the same. I actually think its totally unethical not to tell someone the truth. If you take the average man or woman who gets T2 and dont tell them the facts and those people go on to get complications and then they find out the truth how must they end up feeling. Not only did you not give them the chance to change but the guilt those people can suffer because of how their partners and families are also effected must be intolerable
 
Lucy and xyzzy, re the HCPs and he information and they give and aitude to patients - this is were Viv;s point about the educaion of HCps - comes in.

To an extent here is a perception that many newly diagnosed could not cope with "The Truth". Many of us here would prefer this
but I do no hink we are wholly represenative,

Secondly so many of the HCPs are so inadequately trained in doabetes that the present "leave it to us and all will be well attitude"
is the only way they can cope with the numbers. Think of some of the Pracice nurses -one week deling with vaccinaions , dressings etc the next week being given charge of a diverse cgroup of people with a chronic disease which can maim , disable and kill.

I don't think a few short courses really cuts it paricularly if the doctors then rub their hands in glee and refuse to have anything more truck with the condition except to pick up the money for it.
Like Viv , I oo am, and always have been horrified by the restrictions on test srips for T!s. How can they do this? It is hardly surprising that some T!s are beginning o think of T2s as the enemy. They accept the media view of T2 as self inflicted and fear being tarred with the same brush. They fear that T2s are depriving them , or thir children of necessary care.
I often feel that DUKs pronouncements and media interviews actually fuel this view as hey obviously fight shy of challenging the official view. They try to seer a middle course beween satisfying diabetics and satisfying the NHS and, as is often he case with these huge charities fudge any challenging issues . Iam sure they justify this by the "greater good " concept regarding their research etc
but by no addressing fundamental issues and because of heir standing they are acually confirming the stereotypes.

I understand that many T2s here , especially the newly diagnosed will feel hat test srips for T2s should be the main focus of any campaign but it is necessary to be realistic and to remeber hat tes srips for all has been tried and found wanting and has only just been phased out. We also have o remeber that there ARE NOW MORE PEOPLE THAN EVER DIAGNOSED WITH T2 every day.

If we wan o be heard his cannot be the main focus of any campaign. It won;t happen, I remeber how test strips used to be given to all with no education as to how or why they should be used There were very good reasons for this, The Nurses who doled them out didn't know themselves! Imagine the wase!

It is generally acceped here hat a reurn to this system is not possible but I can understand why "they" would baulk at any mention of est strips. The onext must be righ and we must place limits on i to show we are reasonable people and not a "loony " pressure group.

I don't know about a short er but more contented life. it is not a life or deah situation necessarily. It is more of a comparatively healthy life as opposed o ne made difficult and even unbearasble with complicaions.

in my own case , I have complications caused by a mad rush to reduce my bg levels to mee arges which led to my being given
medication which was "sus" at the ime and has now been withdrawn from the market. I was henn over-lasered again in a rush o meet targets.. It has resulted in a cost to the NHS of thousnds of pounds and this is onging.

As the treatment seems unlikely to save me from substanial - if not complete sigh loss the worst thing I can imagine is a long life
with this disability and possibly others arising from my fuure limited ability to control the condition for myself.

What would have prevented this. Well , more individual treatment and targets given that it was immediately suspected that I had probably been pre -diabetic for most of my adult life. twenty years perhaps, Then a suggestion that I might find REDUCING carbs beneficial becuase I was not overweight and was on a gi diet it was not condsidered that that I neede any dietary advice . I was
encouraged to eat more carbs to counteract the efffecs of almost all he medication I was given , particularly metformin,
I did eventually find a way of using the test strips which was of great help to me bu nothing much helped until I found this forum , decided to ry reducing carbs and this together with Januvia reduced my lHBA1 C considerably.

I agree with he original poster. Correct dietary advice will save lives and prevent complications and thus save money . If we manage o get this simple ac across o anyone in a poasition to do something about it then the rest will follow,
Bringing diabetes to he fore will help all diabetics. I can understand that he uninformed want a division between T1s and T2s but I don't think anyone here is uninformed .
We know that it is not a quesion of the same scarce resources being handed to one group rather than the other.

Thanks again for your great input VIv.
 
Unbeliever said:
To an extent here is a perception that many newly diagnosed could not cope with "The Truth". Many of us here would prefer this but I do no hink we are wholly represenative,
Click to expand...

The counter argument to the perception that the newly diagnosed cannot cope with the truth is that without the truth a T2 cannot be expected to take individual responsibility for their condition. Once they have been told the truth every T2 can make the assessment to either ignore the truth and risk the consequences (both personal consequences and the consequences they will inflict on their loved ones and society as a whole). If they are not told the truth they cannot be expected to make that judgement. I suspect my view would be the prevailing view of society as a whole and is therefore anything but unrespresentative


Handing out test strips to all T2's is not what myself and many of us think "Eat to your meter" is. "Eat to your meter" is best thought of as an option presented to the newly diagnosed as part of the patient self management agenda. If selected as the patients preferred option strips are prescribed as part of that option along with a range of dietary options (low carb, low GI, portion control etc.). The option is monitored and if its seen the patient does not respond positively to the regime the strips are removed and different self management options are discussed including a move to stronger meds or insulin. I would add that new strips should only be prescribed if the diabetic returns the old ones thus avoiding the possibility of a black market in strips. If "Eat to your meter" is seen to work then I have no problem with what Defren's doctor is doing which is to tell her they will be cut down once control has been achieved.

What I've described is totally different to handing out strips to all T2's and it encourages a T2 to take responsibility for their condition.
 
Unbeliever said:
To an extent here is a perception that many newly diagnosed could not cope with "The Truth". Many of us here would prefer this but I do no hink we are wholly represenative,
Click to expand...

Whether or not the patient can handle "the truth" or not, Doctors are obliged to treat the sick:
I will apply, for the benefit of the sick, all measures [that] are required, avoiding those twin traps of overtreatment and therapeutic nihilism.
Click to expand...
http://en.wikipedia.org/wiki/Hippocratic_Oath
 
I agree with you on those points, Xyzzy. Free meter and strips could be an option for the first 6 months; I should think most of us test less after that period anyway, once we know what we can and can't eat.

In some ways the 'better training for HCPS' is the keystone to this. Does anyone know how much time of a medical degree is spent on diabetes? (both types). It doesn't seem to me as if it's a great deal. I know that they don't spend much time on nutrition. Maybe some HCPs don't know what a carbohydrate is, either! :shock:

After the HCPs are properly educated, then they can 'properly educate' newly diagnosed diabetics. I'm managed by the practice nurse; I've only seen the specialist GP once, at my own request. I didn't agree with very much that she said, so we avoid each other now. I've had one 'group therapy' meeting with the peripatetic dietitian, and I've never seen the peripatetic SDN! That's after 2 years+. Most of what I know is from reading around and this forum.

Mind you, I'm very happy with the practice nurse - she's extremely knowledgeable about all sorts of things, agrees with what I'm doing, and lets me get on with it. . I must ask if she keeps a list of 'best controlled Type 2s". :wink: Am I on it? :lol:

Viv 8)

PS re Stephen's post, above: I got the truth all right! (from the specialist GP). "If you feel sick, go to A&E - DKA. Common complications are blindness, kidney failure and restricted blood supply to the feet and legs, leading to amputation. And it's all your fault". That's roughly what she tells all the newly-diagnosed.

Fortunately I'd been reading up, so I knew enough to add in all the caveats she missed out - the main one being: "but maybe not if you control your blood glucose levels correctly".
 

I often hink this is the reason why many GPs try to opt out of dealing with diabetes when they can. If you mange to evade the Diabetes Nurse and even sometimes the specialist diabetes Gp and get to someone who has not tacitly agreed to toe the party line you find a definite sense of embarrassment and a reluctance to fob patients off and tell them fairytales and nonsense just to placate them and give themselves an easy life.

I have met several doctors who obviously feel that these things are wrong and will say so. many nurses are more credulous and
honestly believe that NHS guidelines are always right.

When I was disgnosed in A& E after collapsing because of an unrelaed mater I was not paricularly surprised because I had suspeced it and my father was T". The sister kindly old me that I was no to worry. It would not change my lifestyle in any way.
It was merely a matter of taking a few pills.
I wasn't condoning his attitude but i certainly exists and is often well meant.
 
They know more than they're letting on. They know (roughly) how many variants of the disease there are - but I doubt they know how to treat each variant. And identifying which variant each of us has is expensive and difficult.

Grouping all of these conditions together as T2 Diabetes is their way of dealing with it. And by all of these conditions, I mean conditions where the main symptom is high blood glucose.
 

I understand and agree with you xyzzy . I was no attacking or disagreeeing withy ou in any way. Some new members have been calling for test strips for all T2s but I wasn't including you or Grazer or Borofergie in their number.
I am just thinking of the world outside this forum and the best way to make a quick and effective impression as called for by the OP. I am certainly no apologist for current NHS policies of lulling unsuspecting patients into a false sense of security . I was merely thinking of tthe many who do not want to play a part in the management of their own condiion. Who have been almost brainwashed into thinking that all they need do is to take the pills and keep their appointments.

Then here are those who won't even do that. Maybe people who have found their way here are not typical at all. Maybe it is not the faut of the others and maybe the HCPs have a jaundiced view of daibetics in general and that is not entirely their fault either. In any event people should not be dying and suffering complications for want of some simple straightforward advice .
This has to be put in a form acceptable to those able to do something about it .Preferably as quickly as possible.

It is a good idea to have a position statement so that if we are successful in attracting the attention of anyone who can actually
do somethimng to advance the cause, we have all our ideas in place.

The whole issue of the treatment of diabetes is in chaos at present. Everyone thinks that their own paricular cause or disease should take priority. To present ourselves as The VOice Of Reason advocating effective dietary measures which will cost very little to inroduce and calling for proper education of HCPs and patients [which can include self testing of blood glucose ]cannot be thought outrageous by anyone surely? To make test strip provision the central issue would be a bad mistake and counte rproductive. I am sure.

.I assure all of you was not intending to quibble or to disagree in any way . I have no axe to grind with anyone and I think we have achieved a useful consensus on many things over the past few months.

I just believe srongly that to make a quick and effective impression it is vital to keep things simple in the first instance.
 
I don't know if you've missed it elsewhere, but our very own IanD is going head-to-head against DUK on the Low-Carb diet in Hounslow, next Tuesday evening.

I'm going to lend my support, but if any of you are near to West London then it would be an excellent way of starting to do the "Something that must be done":
viewtopic.php?t=29394&p=276385#p274641
 
[mod edit: comments viewed as contentious]

[mod edit: comment regarding type 2s 'unfairly' burdening the NHS removed]

See experience of the 'Real' life of diabetic's have taught me a valuable lesson... Adhering to any diet is pretty rare medical condition or not! The more restrictions placed on the diet the more difficult that individuals find it to adhere to the diet on a long term bases, and it's the ability of the diabetic to control their diabetes over a long period of time that makes a difference of outcome...

But there's a more fundamental reason... For yep I happy to support T2's get access to meters/test strips and education how to use them effectively... But refuse to support any call for enforcement of diabetics to follow a VLC diet... It has nothing to do with whether I have doubts about long term problems with VLC diets... But what the message gives to Joe Public and playing into the media hands!

As Dawn pointed out that the MP Keith Vaz is a T2 diabetic, the same MP who is the proposer of the 'Fat Tax' Bill his speech he gave to parliament back in April in support of his proposal of the Bill to be turned into an Act of Parliament (or what ever the phrases are) in his presentation speech, he notes his vested interest due to his T2 diabetes... He underpin's the need of the 'Fat Tax' by informing parliament (I need to paraphrase here), 80% of T2 diabetes is avoidable due to it's link with obesity and the 'Fat Tax' will help to address the obesity epidemic we face! Perhaps, Keith Vaz may not be the ideal candidate to get on side!

But to present other petitions from which ever way you look at it would come from a very tiny minority of diabetics. For HCP's to change it's stance/mantra to a VLC diet, which again Atkins, Southbeach diet and other various names VLC has been titled over the years in the aid of weight loss diets, plays right into the hands of the media and their stereo typical stance of T2 diabetes being self inflected!

So by just concentrating on access to meters/test strips without making reference to 'dietary' advise and the back up that education to use these effectively... Will do more good in the long run, as what well happen it will get T2's to look at their diet start to make changes then look further than their HPC's for more information.. You then guide people into a situation where the find their own level and have a choice to whether go for a combination of medication and diet or perhaps just diet... But because they are in control they are making the changes to their lifestyle they are actually more likely to stick to their methods long term... And have a lot better out come avoiding complications...
 
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