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Why Won't My Diabetes Nurse Let Me Have A Pump?

Discussion in 'Insulin Pump Forum' started by Kellyp85, Sep 12, 2018.

  1. Kellyp85

    Kellyp85 · Newbie

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    Hi. I've had very unstable diabetes for 11 years. I was given a pump 5 years ago and my BG improved massively but the nurse took it away as the improvement apparently wasn't significant enough to warrant keeping the pump. I want to try it again so I have a hope in helps chance of starting a family but the nurse and doc keeps saying not until my BG has improved?! Surely this is defeating the point of my needing a pump due to poor control.... any thoughts would be appreciated
     
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  2. EllieM

    EllieM Type 1 · Well-Known Member

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    Well, I guess that different regions have different rules about requirements for pumps, but I agree it does sound crazy. Have you told her you want to start a family and what was her suggestion on how you should improve your blood sugars? Have you got access to a cgm? (I've never had a pump but personally I find my sugars improve dramatically with the more testing I do, and a working cgm provides the best testing of all.)
     
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  3. ickihun

    ickihun Type 2 · Master

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    I thought pumps were only given to well controlled diabetics?
     
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  4. kitedoc

    kitedoc Type 1 · Well-Known Member

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    Hi @Kellyp85, It does seem unfair. As someone not living in the UK I bow to diabetics who know the system better but my thoughts are: Your DSN or the Health Authority should be able to provide you with what the criteria are for both obtaining a pump, what is considered sufficient improvement to keep one and what are the criteria (set of reasons) for when insulin pumps are prescribed for pregnant diabetics.
    Based on that information you might write/email your nurse with your concerns about managing your diabetes in preparation for starting a pregnancy (apologies for the awkward choice of words) and also about your current BSL, HBA1C , insulin dose and occurrence and times of any hypos.
    This provides a written record of your request and allows you the opportunity to address your enquiry to the pump accessibility criteria.
    If you do not receive a reply with a satisfactory explanation then you could request to receive a copy of your clinical record including the time period before obtaining the pump, during and afterwards to see what comments etc were made. I assume such a request has to follow a particular procedure which the Health Authority can provide for you to follow. (and that your record copy has to be provided within a certain time period.
    Looking at your record gives you an opportunity to see what your nurse and other health providers have written and whether it appears that your removal from the pump did follow the guidelines and if your nurse's record of more recent conversations with you about her refusing to restart you on an insulin pump match your memory of such conversations.
    It also helps ensure that your written request has been recorded in your notes and if the nurse has recorded any communications with you accurately afterwards.
    The above, though arduous sometimes, is what I call 'making use the system' to see if you have been treated fairly or have any cause to object to the way your request or past treatment has been handled.
    You may need to find someone to interpret health providers' use of language (? and writing legibility)?. Others will have better answers than I how who make support you in this.
    Best Wishes and I believe that those planning pregnancy are encouraged to start Pregnancy multivitamins/minerals supplements as some minerals etc are required from the moment of conception.
     
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  5. Deleted Account

    Deleted Account · Guest

    As others have said, the rules vary per CCG. In my area, the one criteria for the pump is proof you can manage the extra control the pump provides. This includes carb counting (a DAFNE type course is mandatory) as well as the ability to understand temporary basal and split/combi bolus.
    This is on top of high hb1ac and/or frequent hypos.
    Have you looked at the input website? They may be able to assist.
     
    • Informative Informative x 1
  6. BeccyB

    BeccyB Type 1 · Well-Known Member

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    • Informative Informative x 1
  7. NicoleC1971

    NicoleC1971 Type 1 · Well-Known Member

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    All the advice is great. I was threatened with withdrawal of my pump when it came to replacing it because my scores weren't much improved although I found the pump a great tool for avoiding blood sugar rollercoasters. I simply found a sympathetic nurse and then made a concerted effort to get my numbers down because the bureaucrat at the CCG will only consider this and not your quality of life. Pumps on their own have not been shown to beat MDI as a method for improving HBA1c and are much pricier than the latter hence the rationing.
    Personally I have found going low carb and doing some fasting to be effective with all the caveats about managing your insulin doses accordingly!
     
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  8. kitedoc

    kitedoc Type 1 · Well-Known Member

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    Hi @NicoleC1971, I would be interested in reviewing the research stating pumps are no better than MDI for HBAIC results.
    Do you have a reference.?
    Without use of a pump at the 45 years on insulin mark despite intensive MDI, I would have lost my driving licence, suffered setbacks in my career and possibly died or become brain damaged through hypoglycaemia.
    Measuring HBA1C does not tell you anything about hypoglycaemic episodes and cannot be considered the final arbiter of diabetes control, just an average idea of what is happening.
    Quality of life IS relevant as disability caused by hypoglycaemia, concomitant loss of earning, resulting rehabilitation all may cost more than would the relatively piddling cost of a pump by comparison.
    Please, I am not against you raising the issue of pumps vs MDI, I applaud it as it is important to understand the sources of information and the thought processes (or lack of them) of policy makers, who by and large do not have a clue what it is like to be an insulin-requiring diabetic.
    All too often cost savings trump quality of life issues. Why are not clinicians speaking up about this and does the NHS and CCGs not allow community representation on their boards and committees? Where has common sense gone?
    And will the intransigence of officialdom lead T1Ds to purposefully suffer hypos to prove a point?
     
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  9. Engineer88

    Engineer88 Type 1 · Well-Known Member

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    Yes it was used against me for the first 10 years I asked. I recorded everything for a while and proved that I was making logically correct decisions and my DP and various other issues were causing more of an impact than they could believe as well as insulin taking 2 hours to start working.

    @ickihun define well controlled... one of the criteria is a high Hba1c after doing DAFNE which I still had
     
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  10. NicoleC1971

    NicoleC1971 Type 1 · Well-Known Member

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    Hi

    Firstly I like my pump and would not give it up for precisely the reasons you mention. I think that if I can get hold of FSL then this combo could make a difference to current scorecard (58 even on low carb).
    https://www.diabetes.co.uk/news/201...lin-pump-to-mdi-treatment-in-type-1-diabetes-
    96419226.html
    This is the study and this site spun it a little differently to other reports I have seen!
    However if you only measure 1 metric (HBA1c) to guage the cost effectiveness and reduction in complications which will be a key clinical goal then MDI vs. PUMP seems to be a draw or that is certainly how a cash strapped CCG looking at HBA1c only may see it.
    With the advent of flash bg monitoring and cgms (if the CCGs ever let us get our hands on them!), there could be better metrics e.g. 'time in range' would reflect the absence of roller coaster blood sugars that have such a detrimental impact on quality of life. Its also interesting that it is reckoned that a spking blood sugar is reckoned to be worse for you than a steady above average blood sugar.
    However when the research was done, which drew the conclusion that reduction in HbA1c was linked to reduction in complications, in the early 2000 s the new bg tech was not available and as you know the CCGs/NHS are slow to respond where there isn't an RCT to back up what seems like Common Sense.
     
  11. Juicyj

    Juicyj Type 1 · Moderator
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    Hello @Kellyp85

    I would be interested to know why your improvement wasn't seen as significant ?

    Keep on side with your DSN, persist and get information from them about what would be significant enough to gain access again, being persistent and labouring on about the focus of getting access to the pump should be your focus, I am sure you can turn this round.
     
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