I would like to go on a pump, what's the best approach to be considered for one?

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mark1975

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Type 1
I have been type 1 for 21 years and currently take Humalog & Lantus.

I am having big problems with my waking levels, they are rising a lot in the morning. I am not having hypos during the night as I have been doing tests at 2.30am. I (and others) suspect I am experiencing the dawn phenomenon.

Here is a thread I started on the subject: http://www.diabetessupport.co.uk/boards/showthread.php?t=28291

I have been thinking about a pump for sometime and have done quite a bit of research.

I have an appointment with a DSN on Wednesday and would like your advice on the best way to approach the subject.

Thanks, Mark.
 
Hi Marc

I switched to 'team pump' in November (I notice I was dx the same year as you).

A couple of questions your DSN will most likely ask are:

What's your latest HbA1c and
What are your hypos/hypo awareness like? (eg any nasties in the last couple of years?)

These relate to the NICE criteria for pump funding.

Knowing the answers helps a good deal in knowing how to approach the subject.
 
Last hba1c was 7.4

Good hypo awareness. Never needed assistance when having a hypo.
 
Hi Mark, i dont think there is a perfect answer to your question. But make some noise about getting one to Docs & sepeialist nurses. See what they say & work at it. Realy good luck 🙂
 
mark1975 said:
Last hba1c was 7.4

Good hypo awareness. Never needed assistance when having a hypo.
Click to expand...

Ah. That may have a bearing. And whether or not you will be seen as eligible will probably be largely down to how pro-pump your clinic is.


From INPUT:
Continuous subcutaneous insulin infusion or “insulin pump” therapy is recommended as a possible treatment for adults and children 12 years and over with type 1 diabetes mellitus if:

- attempts to reach target haemoglobin A1c (HbA1c) levels with multiple daily injections (MDI) result in the person having “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 (8.5% or above) with multiple daily injections (including using long-acting insulin analogues if appropriate) despite the person and/or their carer carefully trying to manage their diabetes.
Click to expand...

So... for you it depends how your team interprets the first clause in your case.

I got approval (despite an on-target A1c and not having had 3rd party help for several years) because I had had some nastier hypos in the past. I'd sort of developed 'coping strategies' and/or a nagging mistrust of my warning signs which were fine, but I still stressed about them in case something slipped through. In terms of 'affecting quality of life', for example, I rarely drove, and when I did I would artificially elevate BGs into double figures 'just to be on the safe side'. I also suggested to them that if they needed me to have an A1c above 8.5% that could easily be arranged - I knew how to do that!
 
I guess I'll just have to wait and see what they say on Wednesday.

I do find that having to constantly use correction doses to sort out my high waking levels can cause unpredictable levels throughout the day which results in:

1, having to chase my levels
2, some hypo's (which probably accounts for my hba1c)
3, constantly worrying about my sugar levels which does affect my mood and quality of life including work, home & social.

I'll let you know what happens on Wednesday.
 
Sounds like 1, 2 and 3 give you a pretty good case.

3 pretty much sums up my own strategy.

Fear of losing warning signs... inability of analogue basal to cope... high testing frequency blah blah blah
 
I entirely agree. Thing is - if nobody knows you'd like one, you'll never be considered for one. And if you also have good reason rather than just fancying it - well that's pretty irresistible really - as long as your clinic are pro-pump.

Do you know whether they are?
 
According to the Input website they are pro pump for children, it doesn't mention adults.

I don't mind what method I use to control my diabetes as long as my levels are reasonably stable which at the moment they are not.

If switching from Lantus to a split does of Levimar will stop these waking highs and stop my having to chase my levels throughout the day which will in turn stop me worrying so much about what my levels are doing then I'm happy to go with that.

What I don't want to do is change my long acting insulin then still be in the same situation in 6 months time.

It's taken me 5 years to get referred to the clinic at the hospital as my local NHS trust's policy is for diabetes to be managed by my GP so I don't want to waste this opportunity.
 
Hi Mark

It does sound like you do have Dawn P, and in general 7.5 is ranging on the higher side..

The best thing is just ask and explain why you feel that the pump is your way forward, if you got print out's of you data, and you gave relate some of the pumps ability to your data the more's the better..

And if you get a unfavourable response from the DSN, it doesn't mean that no you can't have one, just means you'll going to have a bit of a battle on your hands... But battles can be won..

It took me almost 4 years to build my case for my insulin pump, I was using the old guidelines which didn't have the 'quality of life' element to it... But I built my case finally got my pump 4 years ago and never looked back..

So ask the DSN, and find out how the ground lays, then you know what you'll looking at and if it means you need to battle, then their a lot around to help you build your case etc....
 
Hi Mark

Dawn phenomenon isn't part of the NICE criteria, but it is suggested as a suitable reason for pump therapy by the Association of British Clinical Diabetologists.

As others have said, even if you DO meet NICE criteria, it really comes down to how pro-pump the team are at your clinic.

Have a look at our leaflet https://www.box.com/s/b1fe5dfaf5b1c08a6cf9,
especially page 2 (about criteria) and page 3 (how to show you have the "commitment" to use a pump well). You may want to print it off and take it with you to help your discussions.

Please do contact us on input (dot) enquiries (at) gmail (dot) com if you get brick-walled.

Hope this helps

Lesley (from InPuT)
 
Good luck with your pump journey and application!

I got my pump in March this year and when I mentioned to my consultant that my HBA is likely to be a reflection of the highs and the lows, he said it isn't and shouldn't be interperated as an average!

Doesn't the deviance figure have something to do with it? If I remember rightly, shouldn't it me no higher than half of your hba figure? So 7.5 = 3.7/8?

Or am I just talking gobbledegook!!!!!!(more than likely!!)
 
Errrr LOL

Normally your meter average is higher than your A1c, there was a table kicking around at one time, but of course if you have a lot of hypos and liver dumps, you never know what it's going to do.

It's weighted, isn't it, rather than being an average?

So the last 4 weeks counts for 55%, the previous 4 weeks counts for 30% and the furthest away 4 weeks counts for 15% - those aren't the numbers, but it's summat like that.
 
I am in the same boat as you, well I haven't been diagnosed as long but am hoping to push to be put on the waiting list for a pump sooner rather than later as there is apparently a 3 year waiting list here anyway!!!

Your 3 point sum my reasons up perfectly too, that and the fact I hav 2 little children and constantly worrying about hypos is affecting their lives too and it is unfair.

Good luck at your appt, be assertive and tell them what you want. Let us know how you get on.
 
lauraw1983 said:
Your 3 point sum my reasons up perfectly too, that and the fact I hav 2 little children and constantly worrying about hypos is affecting their lives too and it is unfair.

Good luck at your appt, be assertive and tell them what you want. Let us know how you get on.
Click to expand...

This also applies to me - two young children and it does affect them, especially the younger one - she gets quite upset when I hypo and have to wait for sugar level to come back up. They also get upset when they remember Mummy isn't going to get better:(:(
 
I had my appointment with the DSN on Wednesday and it went really well.

We have basically started again from scratch with my Lantus, Humalog & carb counting.

So far my levels seem to be a lot better but it's still early days.

I discussed the possibility of a pump with the DSN and she said if we can't get my levels more stable especially my morning levels (which would in turn stop me from worrying about them so much that they are affecting my quality of life) then I would be considered for a pump.

So I'll just have to see what happens over the next few months.

Thanks to everybody for their help, support & advice.
 
Good luck Mark, I hope the changes help and if not then a pump is forthcoming to help you improve things 🙂
 
Good news Mark. Sounds like your DSN is being very supportive and helpful. Hope the improvements continue and you manage to crack your morning levels (with or without a pump).

Lots of options to explore with Lantus in terms of dose, injection timing and splits - just a matter of working out which works best for you
 
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