Hello & questions about CGMS

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    • #9950
      Alison
      Keymaster

      An intro from @John and some questions about CGM too. John, I’ve moved this to the Forums as more people will see this there – Alison.

      Hello Alison and Everybody Else,

      I’m new to this and might be putting this in the wrong place. I’ll wait and see if somebody puts me right, and go to business.

      I started pumping in 2000 and the 3rd ( I think ) pump, a Paradigm 715, came up for replacement in November 2010. The recommended new one is the Paradigm Veo, allowed rather than recommended by the hospital, paid for by NHS/PCT. On eventual delivery, hideous rumour confirmed – no CGM, when sort of implied by adverts that it would be included. Don’t know why not:
      a) Medtronic didn’t mean it would be
      b) Hospital didn’t ask for it
      c) NHS/PCT wouldn’t pay for it
      and I ( think I) want one. There seems to be an important part missing, with the Veo and no CGM. A bit like getting a new car with a blacked out windscreen.
      BUT, sensible advice from Blog, good idea to find out what you are moaning about and what the thing can do (and if you Really do want one ) before stirring up the mud trying to get one.
      So, here’s the first question ( or nest of questions ) for all you kind people who have battled through my ramblings:
      If you have got a CGM: are you pleased with it ?
      how easy/difficult is it to use ?
      would you be parted from it ?
      what does it actually usefully do ?
      would you recommend it to someone who hasn’t got one but has got a Veo (eg Me ) ?
      And, if you haven’t got one: why not ?
      and would you like one ?

      I have read some bits on the Blog which seem to be very favourable and it will be very helpful and interesting if any one will kindly put down something like one word answers to help me summarise what customers think.

      Thank you in advance to all you kind prople. More direct thank you later when you have done it !

      Thankyou and over and out
      John

    • #12324
      Alison
      Keymaster

      Welcome John, it’s good to have you here.

      The Veo is CGM capable but doens’t come with working CGM unless you specifically request (and pay for/get the PCT to agree to pay for) the transmitter and sensors required. From memory I think the transmitter is a couple of hundred pounds and lasts about 18 months, the sensors are around £30 each and last about a week. Most clinics have a transmitter and sensors nowadays so you could try asking them if they’ll lend you it for a week so you can try it out.

      I won’t go on too much about my CGM because I’ve raved about it so many times in posts but to answer your questions briefly:

      I love it, have had it for 4 years and would fight to the death to keep it.
      It isn’t particularly difficult to use, but takes some getting used to. You might find these posts useful:

      The pros and cons of CGMS – https://www.shootuporputup.co.uk/2009/04/to-cgms-or-not-to-cgms/
      What difference CGMS made to me – https://www.shootuporputup.co.uk/2010/06/what-made-the-difference/

    • #12325
      Stephen
      Participant

      If you have got a CGM: are you pleased with it ? : I’m not as enthused as @alison, but when it works it rocks!

      how easy/difficult is it to use ? : Piece of p… ;)

      would you be parted from it ? : Yes, in fact I’m on a break from it at the moment.

      what does it actually usefully do ? : Umm, warnings when BG is above / below pre-set limits. BG trending over time.

      would you recommend it to someone who hasn’t got one but has got a Veo (eg Me ) ? : If you’ve got the money to burn then yes. If you have to fork out for it because you want to try it, then no. As above, do the PCT have a loaner?

      Here’s an email I got from Medtronic when I started asking about it :

      If you are considering self funding for the Continuous Glucose Monitoring aspect of the Paradigm®
      VeoT System, the price of the Continuous Glucose Monitoring Starter Kit including the MiniLink,
      download software, CareLink USB Adaptor and a box of 4 glucose sensors is £250 when purchased
      at the time of the pump (or £535 if purchased at a later date). When used with the Paradigm® VeoT
      System, sensors need to be changed every 6 days and the cost will depend on whether you wanted
      to use these occasionally in order to immediately adjust insulin therapy when sick, exercising etc or
      whether you wanted to aim to use sensors all of the time. A box of 10 sensors £375.00 or a box of 4
      sensors is £160.00. Glucose sensors have a life of 6 months from point of manufacture so the 4
      box should be considered if you are only anticipating occasional sensor use. Continuous use of the
      sensors could cost as little as £6.25 per day.

    • #12326
      Stephen
      Participant

      Oh PS : I might be more enthused if my PCT paid for it :D

    • #12327
      Alison
      Keymaster

      @Stephen That’s really interesting about the money. I’ve never had to self fund it, but if the funding stopped tomorrow there’s no way I’d be without my CGM. I’d make economies in other areas to find the money to pay for it rather than be without it.

    • #12328
      Tim
      Keymaster

      @John – Alison & I also did a wonderful video about CGMS over here: http://www.youtube.com/shootuporputup#p/u/0/J0R1p5suhtQ if you haven’t already seen it.

    • #12331
      lizz
      Participant

      Hello John, I had my first machine around then too! I had a Minimed 507, then 508 (bought by my mum for me) then a Cozmo Deltec loan for a few years, then (by pure luck) I had one bought for me by my PCT the month before Deltec stopped making them.

      I believe that CGM isn’t funded by the NHS except as a ‘special’ case though, ie if you have very difficult control with, for instance, no hypo warning signs.

      My Consultant is willing to get me a Veo plus the CGM, or let me have a look at a transplant with a view to having one… but I’m not so sure I want to have to find space on me for two sites to put things into all the time! Not convinced about the safety of sensors yet – I’m sure they are ok, but I’m still wary of new technology – look at how ‘human’ insulin turned out.

      I have opted for a blood sugar alerting dog!

    • #12347
      Anonymous
      Inactive

      Dear Alison, Stephen, Tim and Liz,
      Thank you for answers about CGM. The summary seems to be it’s pretty good but not perfect: or, to put it in other ways – good if NHS pays
      – step on theway to closed loop, but what we really need is the automated pump ( for which it looks as if nobody will live long enough )
      – worth trying to get a loan of one.

      Seems to me the best bit might be to know which way BG is going and how fast.

      Again, thanks to you all. Next report will be afer sounding out the hospital people in a couple of days.
      The worst you will be told is no and you won’t be told anything if you don’t ask. Also, the squeaky wheel gets the oil and happy is he who expects nothing because he will never be disappointed.
      etc etc
      I put a couple of lines in this box the other day to say a quick thankyou, and I don’t know where they are now so perhaps i did it wrong – as a New Boy who doesn’t know how to work it yet. If I can’t find this bit later in the week, and there are no responses, I shall have to make a meeping noise and ask for help.
      Meantime, thanks again.

      Yours,
      John

    • #12353
      Alison
      Keymaster

      @John I think you’re right about the squeaky wheel – my squeaking has been so loud at times I think the PCT would secretly have liked to drown me in WD40 to shut me up!

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