Govt - Self Testing NoNo - for attention Admin

[Administrator]

The plan with this is to approach PCTS, perhaps the study originators, and to write an article for the press. Only a matter of finding the time, but we are working on it, promise!

If anyone has any further petition ideas, please shout.

Regards,

Admin

 

[Honey monster]

I would make the suggestion of joining forces with Diabetes UK on such issues
it might well add more clout
Let's face it this Government doesn't listen and you just have to look around at the underhanded schemes it comes up with to "save money" and yet spends shed loads to shore up it's mistakes
two lone voices might not be heard but together ........

 

[junieliz]

Hi honey monster, yes I agree we are in a very depressing time, and yes the government seem to be trying all sorts of tricks to save money, this may only be the tip of the iceberg, but to hit the vunerable as they seem to be doing says it all doesn't it? Yes we do need to stick together on this or who knows where it will lead. junieliz

 

[hanadr]

If you survey newly diagnosed diabetrics and treat them on the high carb diet, then they cannot control their glucose. We need to stand up to the government and fight. I'm going to write to the health minister. I have already bombarded my PCT.

 

[hanadr]

I have written to my MPAnyone who would like a copy of my letter, need only to ask

 

[hanadr]

I have written to my MP, Martin Salter, on the subject of test strips.
Who knows which MPs are diabetic? can we find out? We need as many people on side as possible. If it comes to it, I am willing to march on Downing Street. and knock on the door of number 10 with a copy of Bernstein's book for the PM to read.
I only developed type 2 about 5 years ago, but for 30 years before that, my husband was/is diagnosed type 1. ( probably a type 1.5 actually) I have been battling for help with his complications and it was I who solved the problem of intactable foot ulcers. I applied logic and biological knowledge instead of using some ineffective protocol, which is what the podiatrists were doing. I also got him taking sodium bicarbonate, when his urinary tract infection wouldn't clear on antibiotics alone. So now I steal strips from him. Our GP knows I do it and turns a blind eye. I, and my numbers, am his exemplar patient, when form filling. My control is excellent. My health is fine. My blood pressure is coming down as is my weight and my use of medication. I am of course a low carber. However, yesterday, I had a couple of baby new potatoes with my Sunday dinner. I took a Starlix to cover them. It's too wet to go for a long walk. The Starlix was too much and i ended up taking a spoonful of honey. couldn't find my Dextrosol tabs ( I was a bit confused) I didn't feel any better and took some more honey. This morning my BG was 6.3. Part of that was Dawn Effect probably, but that's over my target. If I had all the strips I need, it wouldn't have happened.

 

[Sweet3x]

ok, then I guess this is one area that France is way better. I get 4 tubs of strips, every 4 weeks, so 1 a week. each tub contains 25 testing strips. So that's at least three tests a day. And If I was using more, I would just say to the pharmacy, and they would give me more.

(offtopic here, a bit, sorry. I've also spoken to my doctor today. He is going to see if he can arrange for me to be put onto a pump, something up until now, he'd said wouldn't be possible. I think it stems from my handing him a booklet of my recent blood test results which are all over the place. He actually seems much more helpful now )

 

[hanadr]

Hi Sweet3x!. Knowing your BGs won't help if you can't control them. Try low carbing. It's the non-invasive way of keeping steady numbers. You won't feel hungry if you cut right back on baked goods, potatoes, rice and pasta. Anyone who tells you these foods are essential, doesn't know diddly. Meat, fish, cheese, eggs and greens with other veggies,and a little fruit will help a type 1 or a type 2. sugar is a definite NO_NO.

 

[janabelle]

Unfortunately it is not only type-2s that are having problems with restrictions on BS test-strips. I'm a long term type-1 and have had this problem with 2 GPs. They follow to the letter the info from the PCT that recommends type-1s only need to test 2-3 times a day. I have always tested much more than this, for my own safety and that of my children. I get what i need from my GP now, but it's always at back of my mind that I may encounter this problem again. I met a guy at the chemist about 5 yrs ago whose GP had restricted him to 1 pck(50 strips) per month, and he was type-1!.
Can someone clear up a query I have. From what I read about type-2s their docs are happy to let their blood sugars run at fairly high levels, yet with type-1s tight control and blood-sugars peaking no-more than 10 after a meal is recommended. I thought the long term effects of the highs would be the same, with type-1s and type-2s. Can anyone enlighten me please.
Jus

 

[Dennis]

Hi Janabelle,

Unfortunately many of the posters you read on this forum have turned to us for advice because they are very unhappy at what their doctors are telling them. That doesn't mean that all GPs give poor advice to diabetics, just that when people are given advice that just doesn't make sense then they tend to seek information elsewhere. I am sure that the bulk of the diabetic population must be being given good advice, otherwise the forum's membership would run into millions rather than hundreds.

In theory type-2s should have as a target the same BS levels as type-1s. However, for a type-1 it is possible to maintain good BS by adjusting the insulin dose to match the carbs you have eaten. Unfortunately a type-2 is stuck with a non-adjustable dosage of tablets, so has to adjust the carb intake to the match the meds, which can't be done with the same degree of accuracy. This is why GPs are often prepared to allow more tolerance in BS to a T2. Unfortunately the effects of long-term high BS are the same for a T2 as for a T1, so it is a shame that some GPs overdo the tolerance. In the long term it is the patient who suffers.

 

[hanadr]

There are a few ways in which a type 2 can adjust their bg. I use Starlix, which acts for about 30 minutes only and according to the Novartis website is safe in fasting people. If I'm having my proper low carb meals, I take only Metformin. If I'm out or at a celebration(like a recent family wedding), I allow myself a little treat ( wedding cake) and take a Starlix to cover it. I also change the amount I walk if I thinkI've "overdone" it. And if I'm above my target of 5.5 at any test I do, I take a Starlix to "correct". If I had a free supply of strips, or just a few more than 3 a week!, I could control even better. My HbA1c is currently running at about 6% most times I'm tested, which I would like to tighten up to about 5%. Of course type 2s on insulin can control as tightly as type 1s.
Now we have that wretched ACCORD study to contend with. VERY poor example of research that was. No wonder you kill people if you dose them up to the gills with powerful stuff like sulphonylureas. There's a much less well known study from Sweden, which shows that type2s on tight control with low carb diet keep healthy. AND they don't gain weight!! And their cholesterol doesn't go up

 

[Sweet3x]

Hi Sweet3x!. Knowing your BGs won't help if you can't control them. Try low carbing. It's the non-invasive way of keeping steady numbers. You won't feel hungry if you cut right back on baked goods, potatoes, rice and pasta. Anyone who tells you these foods are essential, doesn't know diddly. Meat, fish, cheese, eggs and greens with other veggies,and a little fruit will help a type 1 or a type 2. sugar is a definite NO_NO.

Hmm thanks for that. I was simply stating that in France, you aren't limited to how many strips you use. I think, by now, I'm aware that sugar isn't a good thing, but thanks again
I actually prefer to know what my BS is, so I can take appropriate action if needed. That goes towards controlling them. But again, thanks for the advice

 

[janabelle]

Hi Dennis,
You make a good point, and I'm not by any means saying that all GPs are not giving good advice. But some are only following advice from PCTs and their advisers. In the borough I live, the majority of diabetes care is in the hands of GPs and not hospital consultants. In hospital clinics,under a Diabetes consultant there are diabetes doctors and diabetes nurses who see many type-1s and type-2s on a regular basis. I think this situation is preferable, as decisions are made about medication and testing based on the individuals' needs and not based on finances and budgets. GPs are not experts in diabetes, and the guidelines they follow from PCTs are just that. There are many insulins, yet I have been reliably informed that my local PCT have a policy of only putting newly diagnosed type-1s on a regime of the newer long-acting and rapid acting analogue insulins. That is what all GPs in this borough will be told to do.
I agree with you that the number of members on this forum is not so high as to indicate a huge problem. But each person who posts their own experience on any forum is contributing potentially invaluable information to other people with diabetes, and it is important that this information is " out there" for people to view. Particularly if they have any concerns about any aspect of their medication or care.
Jus

 

[hanadr]

In my area( Berkshire) Stable type2s are seen by GPs and practice nurses and Type1s and unstable type 2s are seen by the hospital. Some of the worst advice that I've heard of comes from the hospital. One older unstable type 2 was made more unstable whilst an in-patient and then put onto insulin, when probably Byetts wouldd have helped her. She was already mobility compromised and on mega doses of insulin, cannot walk at all, she's gained so much weight.
Also My type 1 husband has a full rainbow of complications, which have all developed whilst under the "care" of the hospital. I've now cut his carb intake and most things are improving especially his blood chemistry. the hospital's reactio. "Well done! and how did you do it?" On being told it was lower carbing The response was " We don't reccommend that and don't go on any faddy diets".
where's the logic in that?

 

[Er1nyes]

In my area( Berkshire) Stable type2s are seen by GPs and practice nurses and Type1s and unstable type 2s are seen by the hospital. Some of the worst advice that I've heard of comes from the hospital. One older unstable type 2 was made more unstable whilst an in-patient and then put onto insulin, when probably Byetts wouldd have helped her. She was already mobility compromised and on mega doses of insulin, cannot walk at all, she's gained so much weight.
Also My type 1 husband has a full rainbow of complications, which have all developed whilst under the "care" of the hospital. I've now cut his carb intake and most things are improving especially his blood chemistry. the hospital's reactio. "Well done! and how did you do it?" On being told it was lower carbing The response was " We don't reccommend that and don't go on any faddy diets".
where's the logic in that?

It really is a post code lottery!

I live in Hampshire now (was in Berkshire) and my hospital has been fairly good about the advice it's given me. (I requested to be seen there as I wanted access to a nutritionist and prenatal advice)

It may just be that when I go into my appointments I am well and truely clued up and question everything they tell me (politely of course) and they see that I am a VERY proactive pateint who's not willing to just be told what to do.

It's horrible (just thinking about when I was first diagnosed) but I really had to push for EVERYTHING but having said that, now that they see that I am willing to put in some effort towards my care they are happy to indulge me.

It really is a case of the squeeky wheel gets the grease!

 

[hanadr]

I did get a figure. i'm not sure if I should reveal my source, that a diabteic with complications costs nine times what one does without them.
We need to keep throwing that at our PCTs. I'v e already sent it to mine.
My GP used to let me have as many strips as i wanted. I like to test at least daily. Then he was told to cut me to 3 packs a year. I do cadge extras sometimes.
If he as a doctor thinks I use them wisely, who are these bean counters who think I don't? Where are the medical qualifications of these people and how many diabetics are on these committees?

 

[Sweet3x]

I do recall when I was 13/14 that the diabetic nurse that came around to 'liase' with us used to ask that since we didn't use a machine to read the strips, we cut them in half, lengthwise, so we could do twice as many tests. I guess that even that long ago, they were looking at ways to cut costs!

 

[janabelle]

Yeah I remember cutting strips in half- they were the old BM-144 strips that you read the colour and estimated your blood sugar from that. I managed on them for years, never understood why they were discontinued a few years ago, but I'm sure a return to those would save the govt loads and give me more room in my handbag!
I would also like to know who these diabetic "experts" are who make decisions bout prescribing testing strips- I suspect none of them live with diabetes themselves,which begs the question where do they get their info? From what I read on this forum, us diabetics type-1 and 2 don't agree with any restrictions on prescribing. Is there a way we can make a change and get our opinions and experiences heard and make a difference? Any suggestions?? I can only see this situation getting worse in the future, and I don't think this govt are really considering the long term burden that diabetes complications, as a result of less testing will result.
Or maybe they have considered it, but with the introduction of "poly-clinics" and the suggestion that this may lead to part-privatisation of the NHS, it's not something that really concerns them. We will pay.
Jus

 

[hanadr]

My husband is a lifelong type 1 and we used to buy the B M sticks from the pharmacy, (he was prescribed urine testing, which was useless as he has a low renal threshold) and I would cut them into 3. Each ended up about 1.5mm wide, but would give a reading. Eventually my vet brother came to our aid and ordered them for us through his practice.
Surely we could a save a fortune if we used these and interspersed with the "much more accurate???" meters.
Incidentally have you noticed that nurses still say "doing a BM"