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NHS contract for an insulin pump

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

  1. endocrinegremlin

    endocrinegremlin Type 1 · Well-Known Member

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    I signed a similar thing to get my pump. It has been nearly 2 years since I was at clinic. My HBA1c got worse not better. I still have my pump.

    My hba1c was perfection before the pump. Cause 2 vs 22 with the odd 7 in there averages out. Heh.

    It is all scaremongering. I have never heard of the NHS taking someone's pump from them.
     
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  2. fairylights

    fairylights Type 1 · Well-Known Member

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    How do you judge 'benefits' though? It's not just about statistics, it's about say, having the freedom to eat breakfast without going high because you can adjust basal and bolus rates to compensate for e.g. porridge, it's about having the freedom to go on holiday without worrying about having constant hypos because you can easily reduce your basal rate by using a temp when you need to, it's about having the freedom to exercise as much as you want because you can use a temp if you need to, about being able to disrupt your routine, to eat differently to normal without fear, the freedom to NOT wake up and inject insulin at 4am every morning to counteract the effects of DP. If you only use statistics to measure benefits then you are not getting the full picture.
     
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  3. NicoleC1971

    NicoleC1971 Type 1 · Well-Known Member

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    I have had a pump for 7 years now I think and like most diabetic pumpers I know, I'd prefer to keep it. But I am aware that my HBA1c is not much improved and that this and hypos are the quantitative measure by which a CCG and its intermediaries (the care team) will rationalise whether to give me the next one.
    I do not believe that anyone who has had a pump removed (nobody I know although it has been threatened) would get one back either.
    At around £3k a year which far excedes MDI regine costs, I get that and do feel guilty if I don't make the most of the tools but obviously some things feel beyond my control.
    I like it because it is a little drip every hour rather than 5+ daily jabs and less hypos, but after 7 years' I think that it is only the addition of the CGM that is going to be a game changer for me.
    I also worry about the scar tissue issue (the reason Richard Bernstein doesn't like pumps) which manifests as poor insulin absorption more frequently than it used to.
    I would agree with earlier posts that the pump is a great tool if you and your team have the resources to make it work really well.
    How many of us have that level of input ?
     
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  4. ringi

    ringi Type 2 · Well-Known Member

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    Personally I question why the NHS will give anyone a pump without providing some sort of CGM to enable the full benefits.
     
  5. caius2x8

    caius2x8 Type 1 · Well-Known Member

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    I disagree both as a scientist and an economist. The maxim of " continual improvement" which is the lingua franca of organisations managed without admittibg reality fail to understand the law of depreciating returns. In other words a pump may help a patient lower the HbA1c so far. But to lower it by additionally the same amount would be disproportionately less cost-effective either through raised costs or lowered quality of life.
    Example 1: a patient worries about one of these contracts and exhausts their blood strips to try to meet tge contracts targets. The gp is rationing blood strips and so the patient is without knowledge of tgeir glucose level for x long. They become ketoic and are rushed to hospital. High cost, health loss. Poor value for money.
    Example 2: a different patient over corrects to meet hba1c targets. Has hypo and seiuzure and dies. Fatality. Poor cost-effectiveness.
    Example 3: a patients pump is sanctioned, and the reasons they the pump in the first. place come back. Night hypos recur. Quality of life falls. Poor cost-effectiveness.

    These a number of scenerios for which evidence may be requested which demonstrates that the policies in the contract are not adverse effects and do not cost more thannthey attempt to save. Good value for money means health improvement, taking all factors into consideration and or a lower cost.

    On a personal note, i think pumps non-block delivery of long acting insulin is their advantage as the long acting can be shut off for up to 1 hr to temper developing hypos eg if going low and with high amount of residual bolus, as well.as carbs.

    Secondly i found targetting my sugars to 6mM rather than 4 or 5 gave me a great hypo sensitivity eg i now feel sweaty and sick at 4mM . before i did this i could function at 1.7mM. My hba1cs havent tremedously improved or worsened. But i'm having FAR fewer hypos.
    When i was younger and skint, i used to walk literally everywhere up to 10 miles and 30 miles by accident one day. My hba1c was the lowest tge consultant had ever seen. In old money 4.4. Without hypos.


     
  6. Deleted Account

    Deleted Account · Guest

    Because ...
    1. CGM are expensive
    2. CGM are not accurate
    The costs are coming down with CGM and Libre (which is not a CGM) but if everyone with a pump had a CGM, the NHS could afford to give out far less pumps.
    Improved BG management is possible (and achieved by many) without a CGM.

    However, I am not condoning the NHS pump contract.
     
    • Agree Agree x 1
  7. caius2x8

    caius2x8 Type 1 · Well-Known Member

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    Seacrow, i agree with your points. Its not ethical to offer and then withdraw a treatment.

     
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  8. caius2x8

    caius2x8 Type 1 · Well-Known Member

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    A
    Agreed. Looking only at the clinical outcome is a narrow perspective. A patient moving from frequent borderline hypo to not hypo may have only imorived a little, but gained a lot in terms of social and professional functioning. From an economic perspective, clinical and broader perspectives are weighed up to inform policy. The national health regulator who review the cost-effectiveness of new treatments offer the guidance to ccgs and nhs trusts:

    Recommendation: 1.1
    "Continuous subcutaneous insulin infusion (CSII or 'insulin pump') therapy is recommended as a treatment option for adults and children 12 years and older with type 1 diabetes mellitus provided that:

    attempts to achieve target haemoglobin A1c (HbA1c) levels with multiple daily injections (MDIs) result in the person experiencing disabling hypoglycaemia. For the purpose of this guidance, disabling hypoglycaemia is defined as the repeated and unpredictable occurrence of hypoglycaemia that results in persistent anxiety about recurrence and is associated with a significant adverse effect on quality of life

    or

    HbA1c levels have remained high (that is, at 8.5% [69 mmol/mol] or above) on MDI therapy (including, if appropriate, the use of long-acting insulin analogues) despite a high level of care."
     
  9. Seacrow

    Seacrow LADA · Well-Known Member

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    Yes, I agree. But from the point of view of the nhs who are trying to 'ration' the pumps and give to where they are most needed, it is a measurable value. Improvement in HbA1c is an actual number. How do you measure the improvement in quality of life of one person versus another?

    I don't approve of going entirely by the numbers, but I can see why they do. The alternative might mean totally trusting their consultants judgement - horror!
     
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  10. elsalisa

    elsalisa Type 1 · Active Member

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    Oh my... never heard of any contracts but maybe because my daughter is just 10? At what age they become so strict with pumps I wonder. I hope it’s a misunderstanding, but I guess such contracts are written by people who have no idea what diabetes really is. Which is strange.
     
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  11. caius2x8

    caius2x8 Type 1 · Well-Known Member

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    There are tools to measure quality of life across multiple domains (mobility, self-care, usual activities, pain/discomfort, and anxiety/depression) as well.
    Also a small improvement in HbA1c might feel wonderful to someone who really struggles to shift and motivate to try harder.
    Whereas a larger movement for someone who oscillates may make them shrug and say meh, thats life. Even so they'd be awarded the pump and their hab1c may worse. Of course ideal is that people arent discouraged. and keep trying anyway. But whether that works or not I guess we have to judge for, as well as, ourselves..
     
  12. caius2x8

    caius2x8 Type 1 · Well-Known Member

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    I was a libre for a few days and found the match with the blood tests +/- 1% above 4mM. Below 4mM and the Libre was less accurate. I wasnt being offered it free and I was unemployed at the time so I didnt get it.
     
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