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Restriction of Testing equipment/strips

Discussion in 'Diabetes Soapbox - Have Your Say' started by julie54, Jun 23, 2013.

  1. julie54

    julie54 · Well-Known Member

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    I am newly diagnosed Type 2, following a routine health check at the doctors, when my blood sugar showed at 19.4! Had had no indications /symptoms and this came as a complete shock! There was no discussion about diet/exercise and was given a prescription for metmorfin and glimepiride (without any discussion/information etc ) and an appointment with the Diabetic nurse for one months time. Left the surgery in tears, with the prospect of over a month in 'no mans land' without advice or support. Got my act together and started researching around and of course one of the first things I found were these forums from which I gained information and started my knowledge gathering! Began to feel angry about the blase way in which I felt I had been treated and so insisted on an appointment with a G.P. which I got the following week. Saw G.P. - told her that I didn't want to take medication (I hadn't started them) until I had tried with diet first (actually to quote the words on both medication, they both state that 'these have been prescribed because diet/exercise have failed!' Told the G.P. I wanted to try diet first, her response was that it was the policy of their practice to put EVERYBODY straight onto medication, even those who are pre-diabetic. Told G.P. I had been following the Newcastle Diet (found on this forum) for about a week and had borrowed a meter from a friend who has one (and whose GP practice have always readily given strips etc on prescription). I had been recording results and even though it had only been a week they were consistently between 5.4 and 9. She showed no interest whatsoever, and dismissed everything I said, insisting that I should take the medication and follow a 'healthy diet' - even though I had not been given any advice as to what a 'healthy diet' is! So I then asked if I could have a meter and she refused stating that the Trust will not allow them to be given (even though my friend is with a G.P practice in the same Trust!). She said that the meters themselves are not expensive, but the strips are very costly! The irony for me was that having been clear that I want to avoid medication unless diet fails, she promptly gave me another prescription for Statins!!

    So, even though I live on a very very limited income (I made the decision to leave work as a Social worker to care for my elderly parents who are 89 and 80 and frail and I don't want them to have to go into a care home!) of carers allowance/income support which gives me a total income of just £105 per week, and have bought my own testing kit. I need to do this because it is very important for me to keep track on my bg - as of course it is for every diagnosed diabetic!! I will not be able to continue to buy my own strips though, so what I have will only keep me able to test for a fairly short period of time. I am going to see the Diabetic Nurse this week and am going to fight my corner and argue about the meters and if necessary will go through the route of complaining, both through the G.P. practice, P.A.L.S and the Trust - until I get some sort of resolution.

    The reason for my rant and anger at this whole situation is that this attitude towards testing strips results in situations like Ricky - who are not going to see their G.P. in case the testing strips are stopped - which of course means that risks are increased - which is absolutely appalling! Personally, I see the testing as a vital and integral part in managing my diabetes and working towards reducing my BS through diet and exercise before I go down the meds route. Obviously if diet/exercise fails, then I would have no hesitation in going onto meds - but am not being given that opportunity!! I have always lived life with the philosophy of I would rather try and fail, than not to try and never know!! But Ricky - I am worried about you not going for checks because of the fear of testing strips being stopped - which could potentially put you at higher risk.

    Incidentally, I have continued with the Newcastle Diet now for 3 weeks, have lost weight (particularly the fat around my trunk!) and my bloods remain at around 7, so even though it is early days, I am pleased with results so far. Of course, I am aware that this type of diet is not sustainable over a long period (I will do it for the 8 weeks as specified) but then I will probably go onto the low carb diet. It will be even more important then to be able to monitor my BS so I will fight them all the way!!!

    In essence, I feel very strongly that this is a totally erroneous and dangerous stance being made by the NHS/Doctors as presumably a way to save money!! As far as my G.P. is concerned, my first question is whether this is a guidance from the Trust or a Directive. I am thinking it is guidance, as I know that other G.P's in the same Trust are still prescribing strips. Guidance therefore is simply that - and is interpreted differently by each GP practice. But all diabetics need to rise up and challenge if this ridiculous and potentially dangerous stance on prescribing strips is to stop!!
     
  2. Daibell

    Daibell LADA · Master

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    I'm afraid statins are very low cost and the NHS says cholesterol and blood pressure are as important as blood sugar for diabetics. I don't agree with this but maintaining a good HBa1C is not considered 'that' important to GPs.
     
  3. Robyn1973f

    Robyn1973f · Member

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    I've had similar arguments with GP and practice nurse over statins and blood pressure meds. Makes me so angry that they just think shoving pills down you will prevent anything else. They never refuse me the strips though and I get new meters from time to time via the giveaways on here so I always have a good one and the GP usually changes the record to show the new strips I need when this happens. I do think too many medical professionals just think we should do what they say without knowing anything so we can make informed choices. Sadly I don't think this will change...
     
  4. julie54

    julie54 · Well-Known Member

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    Well, today I saw the Diabetic Nurse at the G.P. practice for the first time, and expected the same attitude the G.P. gave me about taking medication. However, was pleasantly surprised that she was somewhat more flexible in her approach! Whilst she has to presumably tow the party line about medication (i.e. everyone should be on them, including pre-diabetics!) she accepted my decision to try diet first and will support me with this and monitor my progress. I was clear with her that I was not completely adverse to medication, but that this would be the route I would take if diet fails to make improvements!! She said that she respected my decisions, because after all it is my body and my condition. She actually gave me a human response - rather than trotting out the standard advice! Most refreshing! With regard to the meter/strips - hit an impasse there! She was quite willing to give me a meter, which contains 25 strips, but that they were not able to give strips on prescription. This has come down from the local CCG (which used to be the PCT) and so I have spent the afternoon writing a complaint, including the Diabetes UK stance on the issue, as well as the NICE guidelines - and have hand delivered it to their offices today. As always, I never go down without a fight!! Self management is a vital component in monitoring blood glucose levels, particularly when adapting diet etc. The irony seems to be that if I was on medication, then it is more likely that I would be given the strips - so maybe I should just have lied and said I was taking them!! As it is, I am successfully losing weight, my blood glucose levels are significantly lower, and I am no longer getting up all night to pee!!!! I had not understood the correlation between diabetes and nocturia (I now know what it is called!!) whereby when the blood sugar levels are high, more sugar appears in the urine because the body wants to get rid of it, and this stimulates extra volumes of urine! I had just thought I was getting up in the night so frequently as an age thing!! I have now had two weeks of non-disturbed sleep - so something is going right!!! Bliss!!! :D
     
  5. SimonClifford

    SimonClifford · Well-Known Member

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    Help my ignorance; if you're type-2 & you spot a "high" blood glucose, what can you do about it that is different from having a "normal", "healthy" diet (which'd be good even if you hadn't measured the BG)?
     
  6. julie54

    julie54 · Well-Known Member

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    Hi. Its not so much about what to do if I had a high reading - it is more about determining which foods cause the blood glucose to rise. The information out there is very contradictory about what constitutes a 'healthy' diet for diabetics, and so i am currently following a low carbohydrate regime. As I am self-managing the condition, it is very important to know which foods/combinations result in raised levels - then I know what to exclude/include etc. Testing is a vital component in my management - 3 monthly blood tests do not give any breakdown but gives an average. An analogy I have in mind is that it is like being told to drive a car for 100 miles maintaining 32 mph, without a speedometer! Guesswork is not sufficient, especially when the implications of high blood sugar levels are so dire!
     
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  7. SimonClifford

    SimonClifford · Well-Known Member

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    Oh, it's quickly released carbs then. (Pasta, white flour, sugar <including fruits>) and very fatty foods (curries).
    I've found there's little benefit in working out differences in glycemic index & some think GI is a bit of a red-herring anyway.
    Admittedly I'm type 1, so I have to pay fanatical attention to carbs, but even I find that if I swap an extra portion (or two :)) for potatoes or rice things get really easy & controllable!


    Sent from the Diabetes Forum App
     
  8. diadeb

    diadeb Type 2 · Well-Known Member

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    Hi julie54, I am a type 2 also on diet and exercise only. I get 4 boxes of testing strips per year which is a joke. Please let us all know how you get on with your complaint.
     
  9. julie54

    julie54 · Well-Known Member

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    Diadeb - well done on at least getting 4 boxes a year!! More than I achieved - just a categoric 'NO'!! But this is so important to me - and I never go down without a fight!! Have moved forward a little since original post - have spoken with someone from the CCG - who accepts that for some 'motivated' type 2 diabetics, then testing blood glucose plays a significant part in self management! However, have still not got a categoric answer as to the reasoning behind the restrictions. Still working on it - and it helps when I quote to them that Sir David Nicholson - the CEO of the NHS - has just recently been diagnosed as type 2 diabetic, refused the medication he was originally offered, stating that he would prefer to manage it himself through diet and exercise - and was promptly given a meter/strips etc!!! This is out there in the public arena from his speech to the NHS conference in June 2013 - and he takes great pleasure in stating that he tests 4 times a day, keeps a chart, and monitors his progress!! Oh to be allowed the same 'luxury'!!! That just made my blood (levels irrelevant!!) boil - clearly for him it wasn't what he knows, but who he knows - whereas now I am armed with - not who I know, but what I know!!! It is also useful to know that test strips cost the NHS £150 million per year, but that in fact this represents just 1.1% of the total spend on diabetes and its complications!! I wonder how much the medication costs in terms of percentage - somewhat more than the 1.1% I have no doubt!! So I will keep you posted on the outcome of my fight to be just accepted as a reasonable, intelligent, human being, who has made an educated choice to work in partnership over my condition!
     
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  10. julie54

    julie54 · Well-Known Member

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  11. diadeb

    diadeb Type 2 · Well-Known Member

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    Well done so far Julie54, carry on the good fight
     
  12. julie54

    julie54 · Well-Known Member

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    Thank you diadeb - I must admit that although I have found these forums extremely helpful, I have also seen some quite caustic comments put on which have made me somewhat cautious to write anything!! My view has always been that whilst constructive criticism can sometimes be helpful, there have been occasions when I have seen things which make me cringe!! I take the approach that as an individual I will always challenge when appropriate, and am always more than happy to share what I find out along the way! Being diagnosed with diabetes is a real crunch to the soul, out of the blue, unexpected, and my view was that the more that I can find out about it, the more informed I can be, and consequently the more I can take some kind of control. It clearly is a lifestyle issue which caused this problem - and so I will do whatever it takes to change my lifestyle. Anything I find out along the way i am more than happy to share with others.
     
  13. mpe

    mpe · Well-Known Member

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    The most important factor is that different people respond to different foods differently. So you need to know what affects you.

    Testing every 3 months is only capable to detecting trends over 6 months anyway.
     
  14. diadeb

    diadeb Type 2 · Well-Known Member

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    Hi julie54, Spurred on by your comments I have just posted a very comprehensive letter to my own GP, who is obviously a member of the local CCG. I shall let you know how I get on, Deb
     
  15. julie54

    julie54 · Well-Known Member

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    Well done diadeb!! Good luck - and keep at them! I have since spoken with somebody from the CCG, whose title was Assistant Director, Medicine Optimisation!! However, despite my asking yet again just WHO is responsible for restriction of the strips, I was still not given a specific answer!! Having said that, she did concede that whilst self testing is not for everybody, there are some highly motivated individuals for whom this would be of benefit - and that I sounded like one of those people!!! Her advice was to discuss this again with the Diabetic Nurse, but once again I had to remind her that the DN was in fact quite sympathetic and apologetic that she could not prescribe the strips - and that I keep going full circle in trying to determine just WHO is saying that they can't be prescribed!! It clearly is not a Directive from the CCG, but a guidance, which puts the decision with my GP practice. ( I did mention to her about Sir David Nicholson having been given test strips without any issue and that he was testing 4 times a day - and oh - to have that luxury!! She went a bit quiet at that!!!) Anyway, the upshot is that she asked me to get my Diabetic Nurse to either e-mail or call her - and so I have since e-mailed my DN, attaching a copy of my letter to the CCG, their reply, and pages 10 and 11 of Sir David Nicholson's speech - and have asked her to contact the woman at the CCG. I await the result!!! Will keep you posted - but the thing is not to let up on the pressure - it is too important an issue - and one which I am now totally passionate about!!!! Julie
     
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  16. diadeb

    diadeb Type 2 · Well-Known Member

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    Just a quick message Julie, as I told you I have written a comprehensive letter to my GP, detailing my motivation for testing etc. and he already knows my background. I handed it in at the Surgery but he did not return form hols until last Monday and I have yet to receive a reply!. I am not expecting to be able to have testing strips placed back on repeat prescription but I'm not sure now that it has been 7 days that I will even receive an aknowledgement of the letter.
     
  17. julie54

    julie54 · Well-Known Member

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    Keep the pressure up Diadeb!! I did - and despite being initially told that I couldn't have them, the DN actually told me today that she is prepared to give me strips! Perseverance and evidence of motivation and commitment won through!
     
  18. cocacola

    cocacola Type 2 · Well-Known Member

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  19. Ricky

    Ricky Prediabetes · Well-Known Member

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    Julie - me again saying don't worry about me as I feel in full control of my diabetes (with my testing strips on prescription) despite not going near my GP!!! :)

    I also have a blood pressure monitor a I was diagnosed with extremely HBP maybe around the same time as the diabetes. My story there was that I did take medication for about 3 months which really didn't help much until I came across an Ayuvedic herbal tablet called IVY's Mukta Vati which works very quickly and I now take only 1/4 of the full dose of that!!! (In case anyone decides to look into this it has to be Ivy's not one of the cheaper look alikes) Since the MHRA regulations you can only get it from one place in UK now and that is via India. What I really wanted to say was my GP called me in about twice after this to test my BP and now I seem to be lost from that radar as well!!! I told them what I was taking and it is in my records but really they should be calling me in yearly at my age to test my BP as well as my Hb1Ac!!!

    As you continue with your low carb/low GI diet you will find - if you ever get hold of the test strips - that it appears as if you have reversed the diabetes. Ha Ha!!! Reversed as long as you don't revert to previous diet and stay on the low carb/low GI. Reversed as long as you don't get ill or have major tooth work done. 3 weeks it took my fasting levels to return to their normal <5.5 from well over 6 (up to 7.2) after the final treatment for tooth ache, root canal and finally root filling done. I have to have the crown put in in about 6 weeks so I wonder if it will go up again!!

    My BS this morning was 5.4 which is fine considering I was out for a meal last night and ate not terribly naughty delicious boiled new potatoes. I felt odd this afternoon after eating out in a Chinese (soy bean curd in some chilli sauce which probably contained sugar in it but my BS was 5.9 when I tested after about 4 hours.

    If you can get hold of strips from somewhere it is important for you to find out exactly what you as an individual can tolerate e.g I can get away with a little Udon noodles but not rice, Burgen bread/the pumpernickel type from Lidl (they have 2 types - one with and one without sugar) but I can't eat any white bread, beigels etc. Sweet potato is fine for me but not malitol (sp) sweetener in some diabetic sweets. Isomalt is fine.

    BTW I still wake every 2 hours (hot flushes for the last 11 years!!) and go to the loo. Wish I could sleep all through. I do think mine is an age thing.

    I love how determined you are - just as I would be in your position. Keep at it!!
     
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  20. julie54

    julie54 · Well-Known Member

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    To be able to test myself has indeed become a fundamental part in managing my diabetes and as a person who operates from logic I fail to understand the rationale behind the policy of test strips being unnecessary for Type 2 diabetics! Of course, I totally understand that they are/should be available to Type 1 diabetics because of the high risk of hypos etc., but the comments which I had from the Doctors about them having no benefit for type 2 diabetics doesn't make any sense to me. The management of type 2 through diet control becomes almost impossible without being able to assess the impact of foods on glucose levels, resulting in having to use guess work and a lot of crossed fingers!! I am still in the realms of newly diagnosed, but from the very beginning - with the help and information I gleaned from these forums - I embarked on what I hoped would be the right way to control and manage my blood sugars. Whilst it is still early days, I went for my first check last week - 2 months after diagnosis. The results were promising, although I still obviously have a way to go! On diagnosis at end of May my HbA1c was 101 which my DN said was 11.4% and last week it was down to 62 (7.8%). To be honest, still not sure what those figures mean, but sufficient at this stage to know that they have reduced considerably. My cholesterol was 7.3 at diagnosis and is now 6. Again, still short of normal - but a significant reduction. Obviously all these figures still have a way to go to come out of the diabetic range - but I would expect that after only 2 months. Like many people, I had no idea I had diabetes - and consequently don't know how long I had had it for - having never had any symptoms. The weight loss of around 20 pounds has obviously had an impact on reducing the figures - but again there is still a way to go!! All in all - I feel as though everything is going in the right direction and although my DN again said that she would like me to take the medication, she did agree that she would be happy to review it when I have another check on progress in 3 months time. Again, I am not totally against medication, but for me if there is an alternate route (i.e. diet etc) I would rather try that and if that fails, would take the medication. For me though, I am not at that point yet - my next 3 month check will point the arrow in which direction I shall continue this journey!! I was very clear with my DN that I know that this is not a condition which will be 'cured' or 'reversed' - but I do feel that it is possible to have control over it through the lifestyle changes which I am making. Which of course means that the lifestyle changes are not for the short term, but are to be permanent. I am fine with that - and just to return to the topic here - this is why my DN agreed to give me the test strips, acknowledging that she would do this because I have showed motivation and determination - peppered with common sense and a realistic understanding of what type 2 diabetes is and the means I am taking in order to control the condition. As I say, a long way to go - with the knowledge that I may or may not reach my goal - and a realistic attitude of knowing that if I fail to achieve what I hope to achieve, I will then take the medication because I will be able to live with myself in the knowledge that I tried! Here's to the next 3 months!!!
     
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