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Letter to NICE

hanadr

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This is a the text of a letter which I have sent to NICe. So far their Autoreply has said it will be about 3 weeks before I get my reply. Comments please!
have read the new guidelines and I'm pleased that there's at least a
nodding reference to improved dietary information in that the guidelines
mention low GI .
I am one of a growing number of type 2 diabetics who follow a low
carbohydrate eating plan to control our condition and to help avoid as many
complications as possible. I don't believe they are inevitable or that type
2 diabetes is invariably progressive.
The guidelines also say somewhere( I should have noted paragraph number,
but didn't) that patients should be involved in planning their own care.
this is severely limited by the decision to stop type 2s testing their own
blood sugars to save money on strips. If , as my GP suspects, the intention
is to get all type 2s onto insulin, then all will need to test and the
strips costs will skyrocket. That is unless there's a plan to take type 1s
off home testing too. The consequence of such action would be to increase
the number of people with serious complications and I cannot guess what all
those blinded by retinopathy, and on dialysis or transplant lists for kidney
failure, or requiring prosthesis after amputations would cost.
I am well aware that type 2 diabetes is still largely a condition of older
people and that many who are diagnosed are set in their ways and don't care
to take control of their own health and welfare. and as elderly people don't
see complications as an immediate threat.
In addition many elderly diabetics don't understand the condition or the
need to eat correctly and the education available to them is not good,
either from healthcare professionals or Diabetes UK. It probably exists, but
isn't offered.
Many therefore decide to pretty much ignore their condition. they take their
medication and that's as far as it goes.
However, there is a growing body of diabetics of all types, who would like
to take full control of the condition. We are the ones who are particularly
badly served by the system at present. We have read the work of Richard
Bernstein, Lois Jovanovic, Katharine Morrison and others and know that what
they advocate and what has been tested by their patients for decades is the
way forward for us. We know that we can comply with a low carbohydrate
eating plan indefinitely and that we only develop depression if we are not
allowed to be in control. We know that there is a wobbly tightrope to
balance on between the weight gain caused by anabolic treatments and blood
sugar control. We have developed tricks to adjust our BGs if they go higher
than our personal target( we have LOW targets) We want tight control
without killing ourselves with huge doses of medication ( ref; the ACCORD
trials)
We worked and paid our dues and now we're being denied the simple way to
monitor our health. 6 monthly HbA1cs are too infrequent. By the time you
get the results, you could have been doing damage for 7 months. In any case
an average of 6.5% HbA1c can represent huge swings of levels in short
periods of time. It's the range that matters NOT the average.
Would any member of the team that wrote the guidelines like to have their
own healthcare taken so much out of their hands?
I have written to my own PCT many times and I have been offered help with
my BG control. I am already doing better than their targets, so what help
could I possibly need other than Home blood glucose monitoring?
 
Good luck, but I suspect Gordon Brown has his hand up the back-side of that organisation, so I dont hold out to much hope of them listening. Don't forget Asthma patients, and Asthma is also a potentially life threatening condition, have to pay for their prescriptions as far as I am aware. I agree that action needs to be taken to stop these restictions, but a protest march may be the best option. Let's see how keen Diabetes Uk are to get involved??
Sorry is I sound a bit pesimistic, but look what else this government gets away with, and no-one appears to stand up to them.
On a downer, exhausted, but am sure I can summon up the energy to fight the good fight if called up.
Bring on the Diabetic Army. :evil: :evil: :wink:
Jus
 
HI again!
Just re-read your letter to NICE. Why don't you specify the amount of test strips you think type 2s should be allowed free on prescription? They will need to be given specific numbers to argue with. God knows who advised them that type-2s do not need to self-test! You are an expert as you live with it day to day, and you should be the best person to advise them. Lets encourage everyone on this forum to do the same and make them listen!
I'm still up for the march!
Jus
 
I wrote to my PCT with a similar letter and they blamed NICE and quoted some studies where people were compared; A "with home testing" group contrasted with a "without home testing" group. these were newly diagnosed people, who didn't know much yet. After some months, there was no difference in the health of the groups and the home testers had more depression. To quote one doctor, "No wonder if they didn't have the right dietary advice and saw their persistent high numbers." This study was done in Ireland.
My PCT offered to help me with my control and to tell my doctor that I'm not happy with my care!!!
My doctor knows I'm unhappy with the strip restriction the PCT have put on patients and there's no way I wish to upsett him. He's been great over the last 30 years and seen me through some health crises, such as infertility and a stroke. As well as my husband's constant troubles with his type 1, where the hospital, who should be taking care of him, just pass him back to the GP.
In any case, my blood chemistry already beats the PCT targets AND I've lost weight, which almost no other diabetic on the area has succeeded in doing.
 
janabelle said:
Good luck, but I suspect Gordon Brown has his hand up the back-side of that organisation, so I dont hold out to much hope of them listening. Don't forget Asthma patients, and Asthma is also a potentially life threatening condition, have to pay for their prescriptions as far as I am aware. :

Sadly, I think you're right. Besides asthma, look at cystic fibrosis patients. Often on multiple inhaled treatment, the hospital gives them the devices but have to pay for prescribed cleaning solutions etc, plus dozens of tablets, maybe overnight tube feeding as well. They have to pay prescription charges unless they get diabetes too (many do but not all), or become too ill to work. Many can work (no benefits to entitle them to free prescriptions) but earnings limited by disrupted education, frequent illness and huge treatment burden. When the list of exempted conditions was drawn up in 1968 average life expectancy for CF was 14, now its 31 and still climbing. This situation still hasn't been reviewed - despite Gordon Brown's son having CF. Maybe when he gets near adulthood....

Cynical Sue
 
I wrote a letter to Evidence Based Medicine months ago when they published the research about testing doing type twos no good and just getting depressed. They are publishing my reply with a comment from the author of the original paper who is a Prof Farmer. In his reply he says that there has not been research done on people who are carb restricting and using their monitors to make eating decisions to keep post prandial levels down. He says such research would be helpful. ie he concedes the point.

When it is published I'll post it here.
 
There is an NHS site that reviews and comments on research that has made the headlines. This is what it says about the recent type 2 and home monitoring research

It is not surprising that patients with newly diagnosed type 2 diabetes found it had more of an impact on their lives and their mental comfort when they had to adapt to regular blood sugar testing compared with their counterparts who did not self-monitor and, to all intents and purposes, could continue life as they had previously. However, this does not mean that self-monitoring of blood sugar has no role in diabetes care. It remains vital that diabetics maintain their blood sugar at as balanced a level as possible in order to avoid the many complications associated with diabetes.

It further points out that although the research suggests that there was no difference between self reported hypoglycaemia between the groups, the non monitoring group had no objective means of testing. As to the depression the researchers do not state whether the two groups were in fact controlled for depression at the start of the trial (if not their statistics are invalid) nor was it clear what the 6% higher score on the wellbeing/depression scale actually meant.

The official conclusion says
The issue of self-monitoring of blood sugar being a “waste” or being a “harm” has been slightly over-emphasised by the news. All people with diabetes should continue to be monitored and carefully controlled in the best possible way, on an individual basis. This study will likely lead to further debate and research into the possible benefits and harms of home testing in diabetes.

although there is an addenda

Sir Muir Gray adds...
The most important variable for people with type 2 diabetes is their weight; they should focus on that and if they want to measure something else, they could measure how much they walk and try to walk an extra 3000 steps a day.
Full article @ http://www.nhs.uk/news/2008/04April/Pages/Hometestsfordiabetes.aspx
 
Did anyone tell Sir Muir Gray that putting patients onto insulin or secretologues makes them gain weight and an extra mile and a half a day isn't going to counteract it??
 
hanadr said:
Did anyone tell Sir Muir Gray that putting patients onto insulin or secretologues makes them gain weight and an extra mile and a half a day isn't going to counteract it??

...or that their weight may not be an issue?
Sue
 
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