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NHS contract for an insulin pump

Discussion in 'Insulin Pump Forum' started by keithharrison, Mar 10, 2019.

  1. keithharrison

    keithharrison · Member

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    I have been using an insulin pump now for 7-8 years. I recently had a diabetic review at the hospital. Within two days of that I received an insulin pump contract through the post. This is a totally new concept to me. Basically is says that if i do not achieve targets listed the pump use will be reviewed and the pump and consumables withdrawn.

    The targets that have been set are to my unreasonable. EG - i have had one hypo in that last 2 months and they are expecting me to improve on that. They want improvement in Hypo awareness. How can i improve awareness of this when i already know all symptoms?

    Yes the one area I do need to improve upon is improvement in HBA1C control for which there are valid reasons for blood sugars sky rocketing at times. I fear that to sort this i am going to have to text my bloods hourly 24 hours per day!!!

    CAN ANYONE PLEASE HELP ME WITH THE LEGALITY OF THIS CONTRACT AND ALSO IS IT NATIONWIDE

    I can upload the contract is needs me - at present I refuse to sign it
     
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  2. Jaylee

    Jaylee Type 1 · Moderator
    Staff Member

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    Hi @keithharrison ,

    Welcome to the forum.

    Firstly. if you do post the terms of your contract here? please edit any personal information regarding you & your HCPs. To protect privacy on an open forum..

    I'm not a pumper. but will tag some guys in who may help. @helensaramay @Juicyj @Mel dCP @porl69
    Opps, forgot to add @tim2000s

    Hope this helps.
     
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    #2 Jaylee, Mar 10, 2019 at 2:33 PM
    Last edited: Mar 10, 2019
  3. Deleted Account

    Deleted Account · Guest

    I have not had a pump contract nor heard of one.
    However, I have seen some Libre criteria which include showing improvement in 6 months.

    I suggest contacting your diabetes team and discuss your concerns.
     
  4. Jollymon

    Jollymon Type 1 · Well-Known Member

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    A zero tolerance? Is that what I’m reading? We can only do the best that we can. I’m blown away by the whole concept. It has to have been written by someone who has not firsthand experience managing the condition.
     
  5. keithharrison

    keithharrison · Member

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    I will be thanks
     
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  6. keithharrison

    keithharrison · Member

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    Basically it reads that way. The have not addressed why my body rejects cannulas after 2 days, absorption from a new cannula, some of the pump settings, my insulin sensitivity, how my body reacts to food the day following a heavy meal, restless nights which somehow increases blood sugars. To name but a few. I know my body and know more about the pump than they do.... The entire situation is ****.
     
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  7. Jollymon

    Jollymon Type 1 · Well-Known Member

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    My body does not like cannulas either. Kinked one this morning in my arm, maybe doing sit-ups or pushups? Found it on my bike when my numbers went up instead of down, was loosing power, and couldn’t eat.

    Infusion sets are pumpings weakest link in the chain. That’s why they are a disposable.

    If they knock you back onto mdi, do they think you’ll control hypoglycemic unawareness better with a long acting insulin? That was the whole reason for me to change to a pump! Short acting insulin was easier to work with, especially through exercise and emotions!
     
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  8. keithharrison

    keithharrison · Member

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    thanks for your comment - i was on both long acting and short acting insulin and there is no was I am going back on that - i spent 14 days in intensive care because the long term insulin did not act properly during a period of illness and i ended up in a coma (blood glucose rose to 72) and they thought that i was not going to pull through... so if they threaten to pull me off the pump i will sue them.....
     
  9. bobcurly

    bobcurly Type 1 · Well-Known Member

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    Yes I had to sign a contract for my daughters pump but it was all about uploading data every few weeks and attending clinic reviews. Also that I would insure it. No target was set about hypos or hba1c.
     
  10. LooperCat

    LooperCat Type 1 · Expert

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    Wow, I’ve never heard of this before! I was advised to insure it, but that wasn’t compulsory (I did though). Roughly what area are you in?
     
  11. Jollymon

    Jollymon Type 1 · Well-Known Member

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    This thread might make him need to do a “rage bolus”
     
  12. Seacrow

    Seacrow LADA · Well-Known Member

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    I was told there were conditions to keep the pump, but only verbally, and these were reasonable conditions, I.e. my HbA1c reduced, I test bg often enough to stop long highs etc.

    In your place I'd rewrite the contract. Use the same general format and layout, but put in what you think are reasonable conditions, so
    - agree to notify them if you have a decrease in hypo awareness
    - attempt to maintain less than one hypo a week
    - agree to a three monthly pump 'review'
    etc.

    And then write a covering letter in which you point out that these conditions are actually achievable, unlike theirs. If you can, get your doc to write a note saying their conditions are not only unreasonable, but unachievable, and you should not be penalised for having good hypo awareness and fair glycaemic control. Also point out that the loss of your pump will almost certainly result in decreased control, increased number of hypos and increased HbA1c, not to mention a reduced quality of life and increased number of hospital admissions.

    I really, really hope this is not new nhs procedure. I find my diabetes is enough work without having to 'reason' with administrators.
     
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  13. porl69

    porl69 Type 1 · Well-Known Member

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    I had to sign a form when I started my pump. Was a 6 month contract(!) stating that I needed to show an improvement in my HBA1C!. My DSN said not to worry about it as it will not be taken away. Which I said why am I signing it!? Needless to say I did NOT sign it but still got the pump
     
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  14. kitedoc

    kitedoc Type 1 · Well-Known Member

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    Hi @keithharrison, In contacting your health team you could question them about why such a daft thing as improving on one hypo in 2 months and about hypo awareness is there and ask if they will wrote a letter to query these requirements.
    You mention having heavy meals and that makes me wonder if you are eating what you like and then pushing up the insulin to deal with it and then having ? hypo or other issues the next day. That sounds like something you and your team can work on.
    As far as sleeping goes I found out more by accident than anything that I suffer from obstructive sleep apnoea, even though I am not overweight. My sleep is much better now that I have had the sleep test and am on treatment for my level of sleep trouble. BSLs are better too.
    And I had done overnight BSL testing to make sure it was not hypos causing my sleep problems.
    Other issues might require counselling if you are say, comfort eating at times, or have stresses in your life over and above this crazy contract bilge !! Best Wishes :):):)
     
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  15. Babyweed

    Babyweed Type 1 · Member

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    I had to sign a similar contract. I’ve been on a pump a little over a year and my hba1c has gone up so they review me every 4 months and keep threatening to take the pump away. At my review last week they decided my basal was at 26% instead of the expected 50%. In all fairness my Dsn has had a word with the consultant saying that him keep threatening me is not helping. They say don’t let diabetes rule your life but when life gets in the way they soon pounce on you.
     
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  16. kitedoc

    kitedoc Type 1 · Well-Known Member

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    The #?^%%$ consultant has not obviously walked a mile in your shoes !!!
     
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  17. ringi

    ringi Type 2 · Well-Known Member

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    Given that the consultants don't have funding to give everyone a pump and CGM, is it not reasonable to remove pumps from someone when it is likely to give someone else more benfits?

    These "contracts" only let them do what they CCG funding guidance says they must do, and they can do to without a "contract". It just says if there is not a clear benfit to spending the money, then the spending must be reviewed.
     
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  18. Seacrow

    Seacrow LADA · Well-Known Member

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    I understand your point, but there needs to be common sense too.

    Otherwise,
    1) you get a pump
    2) you improve
    3) you have improved to where no more improvement is possible
    4) they take your pump away because you haven't improved
    5) you get a lot worse
    6) you now qualify for a pump
    7) goto 1)

    It's not reasonable to demand continual improvement, but that was required in the OP's contract. If the pump is helping you, you shouldn't be threatened with having it removed (particularly after OP's 7 years on the pump).

    Funding-wise, if the pump doesn't cause improvement, then certainly remove it. Taking a pump away from someone who is benefiting and it is helping because someone else could also benefit from a pump - that makes me deeply uneasy.
     
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  19. ringi

    ringi Type 2 · Well-Known Member

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    You are forgetting how much paper work a consultant will have to remove a pump etc. I expect a CGM that is not showing benefit is more likely to be removed due to the high running cost compared to capital cost.

    I hope removing a pump from someone who has been on it long term would need a full case review meating, these meating have all consultants in a department attending.
     
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  20. kitedoc

    kitedoc Type 1 · Well-Known Member

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    And in such a review that the patient is there and has a spokesperson. The clinical staff are not likely to have any real clue about living with diabetes and not even know what to suggest for improvement beyond their rigid teaching. How well do consultants or DSN's know how 'tune' the basal or the best ways to manage particular issues? I would suggest the answer is like a curate's egg. Some brilliant, some lousy. Is the taking away of a pump a failure of the health team, rather than the individual.
    If the individual is not present at the full review and assisted by someone who really knows about living with diabetes, you have a case for lack of natural justice. Verdict might be: Consultant to wear cannula, change cannula second daily for one month !!!
     
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