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New user to forum / looking into pumps

Discussion in 'Type 1 Diabetes' started by kayleighsamlaidlaw, Apr 25, 2019.

  1. kayleighsamlaidlaw

    kayleighsamlaidlaw · Newbie

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    Hi everyone,

    I am new to this forum. I was diagnosed at the age of 14, 9 years ago. I am currently looking into getting the insulin pump. I thought this would be the best place to speak to people and get advice from people that understand the struggles that we sometime experience. If anyone has gone from injections to a pump and has any information/advice about the transition that would be great! And if it's made quality of life better/easier? I'm just not sure at the moment.

    Any advice would be appreciated :)

    Thank you
     
  2. MeiChanski

    MeiChanski Type 1 · Well-Known Member

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    Hello, welcome!

    I am currently embarking on this journey so I'm not the expert. However there are NICE guidelines: https://www.nice.org.uk/guidance/ta151/resources/insulin-pump-therapy-for-diabetes-pdf-374892589

    And if you don't fit the NICE guidelines, there are other guidelines such as dawn phenomena, pregnancy, anxiety of dangerous hypoglycemia/ pathological fear or complications from diabetes - I know there was a female who was blind because of high BG who was able to get a pump because she couldn't see and she was able to get the libre sensors as well, etc.

    You must have done a carb counting course, such as DAFNE and ask your consultant about it.

    EDIT: I found it: https://jdrf.org.uk/information-sup...therapy/can-i-get-an-insulin-pump-on-the-nhs/

    ASSOCIATION OF BRITISH CLINICAL DIABETOLOGISTS RECOMMENDATIONS
    If you don’t meet the NICE criteria but you do fall under recommendations from the Association of British Clinical Diabetologists (ABCD), your clinic will need to make a strong case for you to be granted funding.

    ABCD recommends that insulin pump therapy is also considered in the following situations:

    • Pregnancy
    • Acute painful neuropathy or symptomatic autonomic neuropathy if conventional treatment fails to enable adequate blood glucose control
    • Hypoglycaemia unawareness
    • Extreme insulin sensitivity
    • Needle phobia
    • Severe insulin resistance with poor blood glucose control (especially if the person has type 2 diabetes)
    • Specific quality of life issues:

    • Pathological fear of hypoglycaemia
    • Marked glycaemic excursions/dawn phenomenon
    • Excessive number of injections for optimised control
    • Impaired exercise capacity, abnormal eating behaviour or an unacceptable number of sick days
    • Shift work or frequent travel across time zones
    • In children: sub-optimal school performance, exclusion from aspects of a full school life; behavioural problems (for example, mealtimes); adverse impact on family dynamics
     
  3. evilclive

    evilclive Type 1 · Well-Known Member

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    Which country are you in? Different places have different rules on what you can get.
     
  4. kayleighsamlaidlaw

    kayleighsamlaidlaw · Newbie

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    I'm in the United Kingdom
     
  5. smc4761

    smc4761 Type 1 · Well-Known Member

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    Hi @kaleighsamlaidlaw, welcome to the forum.

    If it only it was that simple, that if you wanted an insulin pump you can just ask doctor and they give you one. As has been mentioned above there are some fairly strict guidlelines/criteria that health areas apply. Some areas are better than others and like many things diabetic it can be a bit of a post code lottery.

    There is obviously no harm in asking if you would be eligible it would be a step in right direction.

    As for the pump itself, well after 38 years of type 1 I was having issues with dawn phenomenon and after many years of injections my injection sites were becoming quite lumpy, so I got my pump 3 months ago.

    It is a lot of hard work if I am honest especially at start trying to get doses correct and I am still experimenting. Had plenty of highs and lows and at moment my control is actually worse. over the past few weeks however i have seen a bit of improvement
    It can be a pain having to wear it all the time, especially overnight and you always know its there.

    It is good of course that I can make tiny adjustments if I see myself going high or low. I dont do much exercise but I know many find the temp basal facility really useful. The majority of folks who have went to pump never look back.

    So first steps contact your DSN or doctor and take it from there.

    Good luck
     
    • Agree Agree x 1
  6. Juicyj

    Juicyj Type 1 · Moderator
    Staff Member

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    Hi @kayleighsamlaidlaw and welcome :)

    The best place to start is with your DSN, speak to them about criteria for getting one, once I'd made my mind up and with some long chats with my DSN I finally decided I couldn't improve my control anymore than I was doing on injections alone as I was really putting in the effort and they could see this but was still not making improvements. I was turned down initially but by this point I was adamant it was for me so again pushed my team and about a year or so later got my approval. There was a lot of work to start with adjusting ratios, recording and reporting back to my DSN, and I wobbled a bit too thinking have I made the right decision but stuck with it and now 2.5 years later I can honestly say it's changed my life and my control greatly, I now use the Dexcom g6 with it so have a continuous glucose meter system which helps me spot anomalies and know when to make adjustments as well as getting an alarm for highs and lows, it's a personal investment of £159 a month but very useful. I also had to complete the DAFNE course as a pre-requisite for the pump, but have my lowest HbA1c ever at 42. I now exercise more than I have done ever with type 1 as the pump gives me flexibility to change my insulin control and if I'm going low I can turn the pump supply down to prevent a hypo with the G6 alert.

    The pump does take a lot of work but with the right level of commitment it is a game changer. The NHS are reluctant to hand them out unless they can see your prepared to really put the effort in, obviously due to cost.
     
    • Agree Agree x 1
  7. Chowie

    Chowie Type 1 · Well-Known Member

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    I’m not in the UK, so I can’t tell you how to get one, but they are grea even the faulty ones. I would suggest staying away from Medtronic pumps (mine has just kept me up all night, again).
     
  8. helensaramay

    helensaramay Type 1 · Well-Known Member

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    @kayleighsamlaidlaw if you are looking for a pump, before looking around the web for reviews and youtube videos, I would ask what are the pump options in your area.
    Most CCGs have a limited option of pumps available. For example, in my area, you have a choice of Medtronic 640G or injecting.

    I have been pumping for 3 years now. It has been great but it is definitely not easy. I would say it requires more work than injecting as you have to be more accurate with carb counting and, with the basal adjustments, there are more things you can do (slightly) wrong.
    If you are willing to put in the effort, it is worth it but if you want to sit back and expect the pump to do everything for you, you may as well be on injections.
     
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