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The epetition

Discussion in 'Ask A Question' started by Squire Fulwood, Jun 1, 2012.

  1. Unbeliever

    Unbeliever · Well-Known Member

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    I pay £25.50 for 100 from Sprit healhcare wih free usualy next day delivery and excellent customer service. I don't have he problems with an increasing no of "duff "strips in each tub either as i do with another brand i get on prescripton. Surely I can't be unlucky all the time!

    Your idea would probablly be a good one for consideration by local diabetic support groups sophia. if there are any who have not been indoctrinated into the belief that tesing will drive you mad . Unfortunately many seem to be organised by the local HCPs.
     
  2. RoyG

    RoyG · Well-Known Member

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    Why could Diabetes.co.uk not negotiate a lower price for the strips. What is the latest advances for an artificial pancreas or CGM devices that would eradicate all this testing and strips, all I have seen is the USA developing this kind of technology, where can you donate to promote research towards Diabetes.
     
  3. SophiaW

    SophiaW Type 1 · Well-Known Member

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    The artificial pancreas is being researched and developed in the UK too, see this link http://www.jdrf.org.uk/research/overvie ... l-pancreas This technology is only going to help type 1's (and perhaps some type 2's who are on insulin?). The rest of type 2's who are diet or pill controlled would not benefit from the artificial pancreas and will still have a need for testing strips. Any donations I make are to JDRF because my interest is in type 1 diabetes specifically with children and they offer so much support and help to families like ours. I cannot say the same for Diabetes UK I'm afraid, I don't feel they help much and if anything they seem to make things worse. I hear so often on this forum how type 2's resent the media pushing the line of type 2's have the condition because of what they eat and their lifestyle, surely their role as a charity which is set out to help people with diabetes is one of raising awarness in a positive non-prejudiced way? I'm afraid Diabetes UK get's no donations from me, I don't feel they offer our family the same level of support as JDRF. However for type 2's who want to donate I'm not sure if there is an alternative charity to Diabetes UK as JDRF is mainly for type 1's.
     
  4. RoyG

    RoyG · Well-Known Member

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    I find it difficult to understand what the difference is, surely diabetes is the same what ever type you have they are both as deadly, can lead to the same outcomes. Why is there a divide, I am no expert but looking on the forum; and Obesity is not the only reason people get type 2, there are many thousands out there who are not Obese with it, and that has been discussed on many threads I have read so far. Surely we are all in the same Boat here and no matter if your a type 1,2 or yellow or green it has a massive impact on ones life needing as much support.
     
  5. SophiaW

    SophiaW Type 1 · Well-Known Member

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    Yes I agree Roy, I feel concerned that perhaps you are mis-interpreting my post and thinking that I don't understand that type 2 is equally serious a condition :) However the charity that offers my family the best support is one whose research and work is aimed specifically at type 1 diabetes. I choose to support the charity that offers my daughter the best support, if that was Diabetes UK (who supports all types of diabetes) then I would choose to support them, however I don't feel they are offering us enough/effective support so I choose to support JDRF who is providing us with good support. I have made use of many schools packs, information leaflets, articles, newsletters and magazines that they produce, Diabetes UK don't produce enough help like this for my child - in my opinion they fail to help us. I don't choose to support JDRF because they support type 1's only, I support them because they are the charity that offers us tools that help us, Diabetes UK fails to do that so why should I give them my hard earned money? If I could afford to donate to both charities then maybe I would, but I can't afford to do that so I must choose one and the one I choose is that which I feel are being helpful to me and my daughter, not because I have some sort of grudge that other types of diabetics shouldn't have the same valuable support. This is why I wonder how type 2's feel about Diabetes UK, they are meant to be working to support diabetics (all types) but all I ever seem to see is them repeating the same thing the press say about type 2's having the condition as a result of their lifestyle, surely they should be offering advice and help that supports all diabetics in a positive way rather than making them feel shameful about saying they have diabetes? That to me is not supportive help and I feel disappointed by them helping to create this seriotyped image of diabetes being a self-inflicted condition.
     
  6. Unbeliever

    Unbeliever · Well-Known Member

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    Spophia your post reflects the way I and many other T"s feel about DUK. I am interested to read what you say about them not
    being paricularly helpful about your daughter. I understood that this was one of the areas in which they ecxcel and the reason why
    many support them.

    Regarding T2 I often wonder whose side they are on! I resent their acceptance by government and the NHS as the VOICE OF DIABETES and the fact that NHS stafff tend to accept their word as gospel.

    As I keep saying. I didn't vote for them. Newly diagnosed i tried their helpline a few imes and received no help whatsoever.
    A simple question about meformin couldn't be answered "until I re-phrased it" ???///

    I never found out what they wanted me to say but the same question on here elicits an immediate response from several experience
    posters.

    Quite apart from their poisonous dietary advice they seem to be doing their level best to foster hostility between T1 and T2 .
    This is quite ridiculous as the divisions are only convenient and probably temporary labels in our present sate of knowledge.
    Yes the treaments difffer but so they do in different forms of cancer and we don't or don't often hear arguments between them. if we do i is only from the "Charities" vying for funding.

    I have yet to hear barones young saying anything helpful in any of her much-publicised TV appearances. They are just publicity exercises where she is very careful not to rock the boat in any way but acitly supports the status quo.
    That is her job of course, the larger charities are big business . Obviously sponsorship for funding is their main focus nott the present diabetic population. But - is it really possible to seperate he two? Don't present condiions have any bearing on future research?

    One of our mebers and reglar posters Hana is very invoved with DUK. maybe she could show the other side of the argument?
     
  7. RoyG

    RoyG · Well-Known Member

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    No Sophia, I can fully understand your reasons, I have 4 boys and would do exactly the same, It was more a general expression, and not aimed at anybody or any organisation, Its more a feeling of UUUUUghhhhh more politics more stereo typing more accusation more blame and finger pointing coupled with ignorance and indifference. I get an illness or disease as it is, and it seems embroiled in divided opinions and poor/Lack of correct information by NHS coupled with lack of resources and ignorance, with penny pinching accountants. when will things ever change, it seems not only have you to battle this thing, but you also have to fight for your (or Dependants) care level. This country is fantastic at squeezing every penny out of you in NI and Tax, but care for you when you fall over after working all your life and your treated like S****t.
     
  8. noblehead

    noblehead Type 1 · Guru
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    Can you give a few examples Unbeliever, I'm a member of DUK and receive their publication of Balance and often read their website and can't say I've noticed them causing a hostility between the two :?
     
  9. SophiaW

    SophiaW Type 1 · Well-Known Member

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    My feelings towards DUK were formed a few years ago when my daughter was first diagnosed with diabetes, since then I haven't really looked at their website again as I visit JDRF for all the info I need. I have taken the time to visit their website today and I see they have made many improvements to the amount and quality of information provided, but I question why it's taken so long? At the time I needed help with finding some sort of printed material aimed specifically at schools. My daughter's school was concerned about managing her diabetes as none of the staff had experience of diabetes and there were no other children in school with diabetes. Our DSN visited the school and had a meeting with the staff but she had no printed material other than the very basic information leaflets about type 1 diabetes, the leaflets were not specifically aimed at schools and school staff so didn't really help them very much. Diabetes UK had nothing to offer apart from the basic leaflets that our DSN had already given to the school. How many years has DUK been around, surely they should have addressed this problem a long time ago, it's not like t1 is something new! I did a lot of research on the internet and finally found some printed documentation aimed specifically at schools and school staff, it was an Australian organisation who had prepared the material (I don't remember who it was now) and it was all available as pdf so I could print in colour myself. There was a booklet (about 20 pages in colour), posters and other material. It was excellent and exactly what I'd been looking for. The only downside is that the printing had to be done at my expense and cost me a fair bit of money to have printed several copies for the various staff members who needed it most. It was not much longer (about a year or two) that JDRF published some schools packs aimed specifically at primary schools, both to educate the staff and classroom packs that the teachers could use and tied into the curriculum so that other classmates could be educated about what diabetes is. Feedback from our school about the JDRF packs was excellent and they have since ordered and used packs again for subsequent years. JDRF has now published a similar pack aimed at secondary schools. They are all free including free postage, unlike some of the publications I see on DUK.

    I also feel that as a large UK based charity for diabetes they should have been doing more to push pump funding for those diabetics who would benefit from pumping. For far too long statistics show that the UK was lagging behind other countries (and still are) and CGM is very still difficult to obtain funding for unlike many other countries. If the charity is going to be there to help my daughter then I expect them to be shouting from the rooftops and leading the petitioning and campaigning for better treatment options for it's represented patient base. Insulin-pumpers org and INPUT have offered far more advice and support than DUK have ever done in the quest to get diabetics onto pumps and help with funding problems, where has DUK been during all this? Equally I wonder where DUK is in the campaign to get test strips prescribed to type 2 diabetics? Why has it taken a group of members from this forum to start an e-petition when a charity like DUK should be coordinating and leading the campaign, is DUK really representing the diabetic patient and what is in their best interest?
     
  10. lucylocket61

    lucylocket61 Type 2 · Expert

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    I have been told, in all seriousness, by a HCP that Type 2 is not a serious problem because

    "All you have to do is lose the weight, and you stop being Diabetics"

    If this view is held by many HCP's maybe it would explain why Type 1 is given media support and sympathy, whereas Type 2's are blamed for their condition and it is believed that it is not life threatening er even serious?

    I use the analogy of Type1 being considered as pneumonia or lung cancer, but Type 2 being considered as Man-flu (a hateful and dismissive term, if ever I heard one)

    I am not saying these views are correct in any way, but that they are prevalent and may be a contributing factor in dividing public positions, and the two types being viewed as separate.
     
  11. Unbeliever

    Unbeliever · Well-Known Member

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    I wonder what that HCP would say to those of us who are underweight or of normal weight ? The message "they " have been trying to send using diabetes to frighten people into changing their lifestyle- must be really effective if even HCps accept it.

    Such ignorance! Education for these people is a priority.The DN in my practice told me that there was no such thing as a "slim " T2.
    if any T2s were of normal weight they must be excreting all he excess glucose in their urine. When i asked if that meant I was not actually T2 she said I definitely was. When asked how she could be so certain she said - "Because it says so on your file"

    Forunately , I was not newly diagnosed, so was able to ignore this nonsense. Criminal nonsense.
     
  12. Defren

    Defren · Well-Known Member

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    I wonder what your DSN would say about me then? I have a goal to be 9 stone by the end of July, but suspect I will get there long before then. I am now a slim diabetic. I wasn't, but I sure am now. Yes, I exercise, but only walking. I am simply not fit enough [yet] to do anything else. I am getting fitter though, but there is no way I exercise enough to excrete all excess glucose into my urine, so she is talking through her hat!
     
  13. Unbeliever

    Unbeliever · Well-Known Member

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    I am a member too Noblehead, I wasn't referring to Balance but to their broadcasts and public statements. They constantly seem to reinforce the stereotypical images of T2 and the cost to the NHS of the diabetes epidemic and the need for more funding because of it . They do not make a case for tesing for T2s but push their mantra of tests all of which are useless without the backup of the relevant hCps which do not exist .
    When there is publicity they choose to portray children waiting for pumps. I am not surprised that some T1s and the parents of children with T1 feel hostile owwards T2s And they do. We have all seeen the recent facebool exchanges . i even saw them on ththis site last week.
    of course they do not come out and attack and blame t2s openly - hat would no be in their interests but i cannot think they are so naive as to believe that their tactics won't have this effect.

    he number of T2s being diagnosed mus help their satus and give them a greater voice but they do nothing for 2s and nothing to debunk the negative propaganda .If they don't who will? I don't think for one moment all T1s are against T2s . My point was that
    by seeming to endorse the misconceptions about T2s they are fostering hosility between T1s and T2s. They are regarded as the ultimate authority on diabetes , their advice is sought by the ggovernment but they do not speak out.
    no wonder some T1s dislike being associatd with T2s or think that there wold be more money available for their treatment or thieir children's treatment. if it weren't for the t2s who only have to diet and exercise a little to be free of the condiion.
     
  14. noblehead

    noblehead Type 1 · Guru
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    Thanks Unbeliever :)

    I don't see DUK 'reinforce the stereotypical of type 2' but that might be because I'm not a type 2....not sure! :?

    The exchanges on Facebook I cannot comment on as I don't have an account on there or have any desire to do so, I only see what I read on here and during my time as a member of this forum I have yet to see hostility or confrontation between type 1's and type 2's, overall I think we are very supportive of one-another in getting better treatment and care.

    As your a member of DUK and receive Balance why don't you write to them and raise your concerns with them?
     
  15. Unbeliever

    Unbeliever · Well-Known Member

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    Not sure what she would say Defren. She would need o test your urine first! :lol:
     
  16. Unbeliever

    Unbeliever · Well-Known Member

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    No, there s probably a difference in interpreaion depnding upon where you are cominfg from.
    I have a Facebook account but rarely use it - I think you must have missed the fairly recen furore on here about comments on Facebook from T1s about T2s .
    I have several times made nmy opinions known to DUK in various ways. I now condsider it a wase of time. they have heir own agenda - of course. I don;' mind conributing o research but have no faith in them as representing me in any way.
     
  17. Paul1976

    Paul1976 · Well-Known Member

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    Or you could leave a sample in the garden to see if there is any 'MiniBeast' interest,I hear urine containing Glucose is like champagne to the Ant population! :lol:
     
  18. borofergie

    borofergie Type 2 · Well-Known Member

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    Yup. Their agenda is selling cornflakes to diabetics.
     
  19. AMBrennan

    AMBrennan · Well-Known Member

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    I have not signed it and will not sign it, for a very simple reason: This kind of thing should not be decided by popularity contest nor politicians (ultimately a popularity contest again). Just look at airport security theatre to see what happens when you get this wrong - after 9/11 everyone was screaming at the government to do something about the threat. As a result, they put in place a system of ludicrously expensive and almost certainly completely ineffective defences - what made the attacks so devastating was that they were unexpected, so the solution would have to try and guard against the unexpected rather than the specific thing the bad guys did last time.

    NHS funds are finite, so whilst you can (depending on your financial circumstances) spend a lot on unproven treatments that you personally believe in, you cannot ask the NHS to pay for all of them. At the end of the day, every pound spend on diabetes care means that there's a pound less available for helping the babies with cancer.

    Personally, I am a T1 patient so I get all the test strips on prescription but spend another £8 per day on CGM. Do I think that it helps me? Yes, sure, otherwise I wouldn't continue to pay for it? Would it be nice if the NHS paid for it? Well, of course. Do I, rationally, have any reason to think that it does anything? No, none whatsoever. As a result, asking the NHS to pay for it is wrong.

    My understanding is that there is no evidence showing that testing is effective in T2. If that's incorrect, then give me a study and send a copy to NICE as well. They are not stupid, and they're not trying to kill us. I'm sure that there's ample funding available - all the big players have already developed products, and conclusive proof that every T2 patients needs to test 4x a day would instantly increase demand tenfold.

    And please don't try appealing to my common sense and telling me that you can't know if your treatment is working without testing - that's an argument from theory, which is a bad. Textbook biochemistry is an excellent tool for producing hypotheses worth testing but not sufficient on it's own. If you want to have some fun, go look at any nutritional supplements. For example, Diabetone (IIRC this is the most popular product around here) has " These include L- Carnitine, Vitamin B1 (Thiamin), plus B6 and C, which are important factors in glucose metabolism.". That's an argument from theory, and entirely true - the important thing they're not saying is that this will *do* anything, because their own research shows that it doesn't do anything.

    TL;DR: The decision about which medical interventions should be financed should be made by experts in the relevant field (which we are not) who are familiar with the relevant research (which we are not) and thus able to make an informed decision (which we are not).
     
  20. borofergie

    borofergie Type 2 · Well-Known Member

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    The same experts who think that we should eat a 50% carbohydrate diet, or different ones?
     
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