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CGM / Libre funding- who has it?

Discussion in 'Type 1 Diabetes' started by donnellysdogs, Jul 23, 2016.

  1. Robinredbreast

    Robinredbreast Type 1 · Oracle

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    I am in Hampshire, a good post dd :)
     
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  2. lizdeluz

    lizdeluz Type 1 · Well-Known Member

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    Same here, my Libre is not set up for 0.5 units. I will see if I can get that sorted today. ;)
     
  3. tim2000s

    tim2000s Type 1 · Expert
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    When I got the 640G I asked about access to the Enlite CGM alongside it. I was told that due to my hypo awareness and good hba1c, there was no chance of funding.
     
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  4. AndBreathe

    AndBreathe I reversed my Type 2 · Expert
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    DD - Sorry this is off-topic, but have you tried using alternative site for singer prick testing? Inner fore arms or the like?
     
  5. azure

    azure Type 1 · Expert

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    That's pretty much what I was told when I got my Vibe - along with a wry laugh from the DSN I asked. They said it was almost impossible to get funding in my area and presented it as a very rare thing (for my area, at least)
     
  6. Hirstygirl

    Hirstygirl Type 1 · Well-Known Member

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    I think it is a very rare thing to obtain funding for cgm @azure. I'm so thankful to my team for pushing my case forward and getting the CCG to approve it, I do know how lucky I am .

    Edited to add I'm in Warwickshire incase you need to know this donnellysdogs
     
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  7. donnellysdogs

    donnellysdogs Type 1 · Master

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    Looks like a few nurses don't know how to set up the readers correctly..

    Unfortunately it only allows 4 time slots.. For bolus and carb ratio's etc. Wheras I have 6..

    You need to have the code otherwise if you change ratio's etc you can't change the settings again!!

    It allows you to enter times ate, insulin etc... I bet Freestyle wouldn't want nurses giving out machines only 1/2 set up... And its only 1/2 useable by the patient too!!

    Gggrrrrr...xx
     
  8. donnellysdogs

    donnellysdogs Type 1 · Master

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    Thank you @Hirstygirl.. Pity you had to lose licence first before getting.

    I have now written to the Chair of the APPG For Diabetes and to my MP in Peterborough and will let you all know their responses.

    I have asked them to get NICE to contact real users of CGM's and Libres to get accurate feed back on them. I hD a CGM previously and got a loaned Libre for a while..

    I also copied details from MP for Leicestershire asking questions on 13 June ref CGM and the response back...

    This APPG is a time for us diabetics to voice opinions. I have given praise to my previous 2 hospitals giving me pump and CGM etc but questioned why if one Consultant from one CCG thinks a CGM is necessary why when I have had to move because of cancer and ill health that this longterm funding should be taken away..

    I have also mentioned that persons with long term disabilities cannot suddenly get better after 3 months.. Ie I can never blood test on my left hand again..and my consultant has said my colon/stomach will never improve.. So in my opinion my CCG are discrimatong against persons with long term disabilities...

    Thanks everybody for comments so far, I would appreciate more, as it is my intention to take this much further!! Nicely of course!!
     
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  9. donnellysdogs

    donnellysdogs Type 1 · Master

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    Trying to improve things for all of us.. Not just me!! Lol
     
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  10. catapillar

    catapillar Type 1 · Well-Known Member

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    I have no hypo awareness. The number of severe nocturnal hypos I have had is far higher than anyone would want. Because of this, my consultant advises I'm at high risk of dead in bed syndrome & there is a clinical need for CGM. However, she also advises she has patients worse off than me (who are unable to work, require care and multiple ambulance attendances due to hypos) who have been denied funding so there would be no point putting in a funding request for me.

    This is covered in my own APPG submission. But happy to be used in compilation.
     
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  11. iHs

    iHs · Well-Known Member

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    Until the companies that produce cgm technology, lower their prices to make it a bit more comparable with bg monitoring, it's more or less 'whistle to the wind ' as very few CCGS will fund cgm even when there is a dire clinical need. It i
     
  12. donnellysdogs

    donnellysdogs Type 1 · Master

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    This is why us people need to write and state our cases.
    It costs £1500 for an unplanned emergency. I've had 2 this past 9 months due to stomach and 1 non a&e but paramedics due to hypo but thanks to my stomach...

    If we fo nothing then we can only blame ourselves...
     
  13. Russem

    Russem Type 1 · Active Member

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    I do not have any hypo awareness and my consultant has been to the board twice to ask for funding for a CGM for me but have been refused both times. I have had a trial of a CGM for 1 week and it greatly helped me as I was getting warnings when my blood was dropping and I was able to do something about it before it became serious. I have had paramedics out many times in the past as I have went into a Hypo coma. I live with this worry every day as does my husband who doesn't like leaving me on my own at home in case I have a serious hypo. This isn't a good life to live but I have been hitting my head of a brick wall trying to get help with this. I was given a pump 1 year ago which helped reduce the hypo's but I think like all Diabetics they will experience hypo's on a regular basis for many reasons.

    I was asked by my CPN to write down saying why I thin I need a CGM and how having no Hypo awareness is affecting my daily life. I did this was was told by both the CPN and the Consultant that it made very good reading and it would be taken to the board to consider but as mentioned this has go me nowhere.

    I am type 1 Diabetic, have been for 40 years. I don't know what it will take before they take notice that some people genuinely need CGM's as a life saver.
     
  14. catapillar

    catapillar Type 1 · Well-Known Member

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    Do you mean the health board? Are you in Wales? Do you get any reasons for the refusal?

    Have you been in touch with INPUT diabetes - were they able to offer any advice on next steps?
     
  15. Russem

    Russem Type 1 · Active Member

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    Hi Catapillar, yes I do mean the Health Board, I live in Scotland. The only reason I received is "there is no funding available". I did write to the Secretary of State for Health and got a reply that said I should discuss this again with the Consultant. This is the reply I received :

    I was sorry to hear of the issues you have been having in controlling your diabetes and appreciate this must be a very stressful time for you. We are aware that people value greatly the benefit of Continuous Glucose Monitoring (CGM) devices in managing their diabetes, particularly in those with additional needs. When discussing treatment plans with patients, we expect clinicians to take into consideration the recommendations set out in relevant clinical guidelines and standards, including those in Scottish Intercollegiate Guidelines Network (SIGN) Guideline 116 on the management of diabetes. These guidelines recommend that CGM devices may be useful only for a small number of people with diabetes who would clinically benefit from their use, particularly as an aid to improving glycaemic control in those who have very limited hypo/hyperglycaemic awareness. I would therefore encourage you to discuss your concerns with your glycaemic control, particularly your lack of hypoglycaemic awareness, with the team responsible for your care in the first instance, as they will be best placed to provide specific advice and support based on your personal circumstances.
     
  16. catapillar

    catapillar Type 1 · Well-Known Member

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    @Russem well that's deeply unsatisfactory. It sounds like your consultant has determined that you need a CGM so the SoS letter doesn't really address the issue of "there is no money". Of course, it could well be that there simply is no money, but if that's the case, if I were in your position, I'd want that in black & white as the reason.

    I have no idea how funding decisions work in Scotland. INPUT are super helpful for this sort of thing in England & Wales. They have a sister charity in Scotland - http://www.ipag.co.uk/nice-guidelines-funding-continuous-glucose-monitoring/ - might be worth getting in touch to see if they can suggest anything.
     
    #36 catapillar, Aug 14, 2016 at 6:11 PM
    Last edited by a moderator: Aug 14, 2016
  17. Russem

    Russem Type 1 · Active Member

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    Thanks @catapillar I will have a look at INPUT's sister charity in Scotland. Every time I ask the clinic the reason for the Health Board turning me down for funding their reply is alway "there is no funding". Once consultant even said that I am lucky that I got funding for my pump!
     
  18. AndBreathe

    AndBreathe I reversed my Type 2 · Expert
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    DD - I'm not entirely clear here. Are you saying the patient doesn't have access to the unlocking code for "Professional Settings", rendering things 50% useful, or something else?

    If it's the unlock setting for the Professional Settings, a number of folks have that. I think @tim2000s might have it. I looked in there, but there's nothing currently relevant to my condition in there, so didn't bother to record the code.

    If it's something else, apologies for going a bit left-field.
     
  19. jakay42

    jakay42 Type 1 · Member

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    I was newly diagnosed about 4 weeks ago and am currently trying the Libra for the next three months curtesy of the NHS. I have still been using the Accu -Chek (AC) as normal carb counting and all that as I have to hand the Libra back after the trial period. First thing it is very very easy to use and painless to apply to the upper arm. Change the sensor every 14 days and so far it’s not fallen off in the shower and I hardly notice I have it attached. However it is early days in my use and some anomalies have already appeared when compared to the AC readings. Bearing in mind it may take a day or two to get used to the hosts physical attributes the readings so far (and it is only a few days) appear to err on the low side compared to the AC. A 4.3 before a run on the AC prompted a plum and 50mls of Lucozade. 10 minutes later it was up to 6.0. The Libra was 3.2 and ten minutes later 3.7. If I was using the Libra as the primary reader I would not have gone out or I would have had a lot more carbs as the Libra was indicating Hypo which was not the case. However a delay in the readings is anticipated as it is not instant like using a ‘pricker’. Hopefully in the coming weeks I will got a ‘feel’ for the Libra and I must admit some reading have been the same as the AC or very close. However the Libra too erratic at this time for me to be fully confident about the accuracy although I am confident in time the Libra will prove very useful and no doubt I will put it through its paces in the next three months.
    I was newly diagnosed about 6 weeks ago and am currently trying the Libra for the next three months curtesy of the NHS in Scotland . I have still been using the Accu -Chek (AC) as normal carb counting and all that as I have to hand the Libra back after the trial period. First thing it is very very easy to use and painless to apply to the upper arm. Change the sensor every 14 days and so far it’s not fallen off in the shower and I hardly notice I have it attached. However it is early days in my use and some anomalies have already appeared when compared to the AC readings. Bearing The Libra is too erratic at this time for me to be fully confident about the accuracy but the last two weeks have not been too bad especially when exercising. Its not Jock proof though as dextrose powder can get into the workings very easily and have to try and get the reader replaced. Its still working away fine just need to press the button more firmly.

    I agree for the details of my experience to be sent to the APPG.

    Jaykay
     
  20. donnellysdogs

    donnellysdogs Type 1 · Master

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    On the reader to use it "properly" ie type in qty of carbs, qty of insulin etc you need the nurse to go in with their code to set it up..or to unlock the reader. My nurses didn't even know about it...so had been setting other patients up in group sessions for a free two week trial without even giving them the "tools" to see the true functionality if with a pen and only 4 time blocks of ratio's. My nurse had rep in at the time and srote the code down for me to go home and change things myself...
     
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