Benefits of pumping ?

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Laureny019

Laureny019

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Relationship to Diabetes
Type 1
Hi, I was just wondering how much of a difference the pump actually makes in your own opinions ?

The reason why I'm asking is that I'm now 20, been type 1 for 11 years and my hba1c is pretty poor to be honest. In November it had gone up to 10% & as far as I can remember has been high since I hit my teens. Ive been on the BERTIE carb course so adjust my dose but can't seem to get a normal range of levels.

I raised the idea of the pump at my consultant appointment in may 2011 but he basically said it would make no difference & said you can only really get funding if you are having serious hypos. Now I'm wondering whether I should've pushed the matter, as I don't know what I can do to improve now. I only see a consultant once a year and a dietician a couple of times a year so don't even have a DSN to ask these things.

Sorry for the long explanation but feeling like I'm trying my best but getting nowhere at the moment.
 
Well your consultant talks baloney, mate, if that's what he told you.

There are NICE Guidelines for pumping and 3 'basic' reasons for having one.

One of those is indeed 'many hypos'.

Another one is not being able to get your A1c below 8.5, despite receiving carb counting training (you've had the training - but no follow up - that's utterly carp as well - they can't just leave you to get on with it and not have anyone to discuss probs with)

And I can't remember the third - but anyway - what it actually boils down to is IF your consultant says you will benefit from a pump and officially recommends that you have one, then the PCT have to fund it.

And you seem to qualify anyway under Item 2 unless I'm going potty.

Do you know what I'd do? - if you aren't in contact with a DSN at the hospital you had your 'BERTIE' course - ask your GP to refer you specifically to a DSN trained in carb-counting - not a consultant - and say to Doc that you aren't getting any support and he'll already know from your A1c that you are struggling.

This treatment makes me wild. After the course I went on - we were all followed up at 4 weeks and 12 weeks, then after that could self-refer back to the DSNs that tutored the course, whenever we needed em.

But anyway, can we help? How long has it been since you did a proper 24 hour basal insulin test with fasting? (I don't mean you fast for 24 hrs, you do it in chunks, as taught on the course) I mean if it's not that then you need to check your carb ratio or your correction rate - but you always have to start with the basal.
 
The benefits are great, so I have heard..............I am not on one, but would love the opportunity...............

The next logical step to take, seeing as your not going to be given one easily, which is normal for most PCTs, is to seek follow up training on your carb counting and dose adjustment, as simply counting carbs and injecting for them wont get you good results.........

I can phone or email my DSN at my clinic if needed, which is not often. Could you pop in and see yours?
 
Well it certainly seems that you qualify under NICE criteria, but you need your consultant to support you. If I understand it right if your consultant tells your PCT that you need a pump, then your PCT is legally obliged to provide funding for it.

I'm not long into my pumping adventure, but I can already see that the incredibly flexible and precise delivery options offered by continuous insulin infusion offer major advantages over injections.

However... you may have a short wait while you wrestle with getting funding sorted - so go after that carb-counting/dose adjustment follow-up. And perhaps start a post or two in the 'general' forum to see if anyone else has any suggestions or thoughts on how to tighten up your MDI control.
 
I'm going to play devil advocate here..

Pumps can only help if the problems with control is based on the incapabilities of the delivery system, if the problems are based on user error then it won't help, it will just become a very expensive piece of kit..

I have seen quite a few pumps given to people who really shouldn't of got them, as the problems were user error which carried on once they got the pump..

I'm not saying that in your case it's user error, but this is something you will need to explore for two purposes it can help with your injections but also it will help to build your case why you need a pump...

Area's to look at..

Hypo's

How many of them do you have?
Do you keep your levels slightly higher to avoid them, is this because your are frightened of having one or it this because the better range you have the more unpredictable hypo's

Background Insulin..

Is this set probably or can you set it probably, you need to do fasting tests to establish what's happening here..

You may find that you have Dawn Phanom, or a rather erratic basal line, one that you can't flatten to a decent workable line to take your quick acting without causing problems. so need a insulin pump to get this sorted..

Understanding foods adsorption, injection timing etc..

This is something that you will really need to know for pumping..

What I suggest that you do now, is first sort out your diabetic care, if you are having problems then seeing a consultant once a year isn't enough, and you do need access to a DSN...

Contact INPUT here www.input.me.uk they can let you know of pump friendly clinics/consultants in your area and if necessary ask your GP to refer you to the pump friendly clinic/consultant..

Sort out access to a DSN, if you'l swapping clinics I wait until you get your referral, but in the mean time see if your surgery got a diabetic nurse you can chat to..

Also ask us a lot of questions etc concerning your control we may be able to help improve this for you, if not perhaps give more help to build your case for 'why' you must have a pump..

Invest in either Using Insulin or Think Like a Pancreas this will expand your knowledge of the basal/bolus regime (carb counting) that you've learnt of Bertie (Bertie, DAFNE etc are all starting points) you could also invest in Pumping Insulin so you start understanding insulin pump theory, not only will it give you a head start when you get a pump, but also gives the ability if you have to battle for a pump, pointing at something of on your BG data, and saying to the consultant if I had a point I could have done this and/or that with the pump, and it would have limited or prevented that from happening..

Oh, also join the mailing list at www.insulin-pumpers.org very useful and supportive when it comes to doing the pump battle..

Keep in touch and we'll help as much as we can... It took me a 3 year battle to get my pump but well worth it..
 
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Thanks everyone for the useful advice. As for the 24 hour basal test - I have no idea what it even is so fairly sure I haven't done one. As suggested I think I'll make getting access to a DSN my aim and then see what happens from there.
 
Hello there!

I love my pump, quite frankly you'd have to kill me to take it off me.

I love the flexibility that it offers me. I can tailor things to make them just so. At the moment I'm on a roll with near perfect BMs that are thanks only to the pump. It allows you a greater choice of what you do with yourself in terms of exercise and such. My pump makes my work a lot easier in terms of diabetes. It's an indispensable tool to me now.

Tom
 
Laureny019 said:
Thanks everyone for the useful advice. As for the 24 hour basal test - I have no idea what it even is so fairly sure I haven't done one. As suggested I think I'll make getting access to a DSN my aim and then see what happens from there.
Click to expand...

Hi Lauren

'Basal testing' is usually taught as part and parcel of pump therapy, and is a very valuable part of MDI - without getting your basal as good as you can get it you are likely to have problems fine-tuning meal doses and corrections doses. It seems that very few clinics seem to advocate basal testing on MDI though why this is the case I have no idea!

Take a read of this... http://www.diabetes-support.org.uk/info/?page_id=120
 
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Thanks Mike, saved me posting the same link!

I was taught that one on my own 'BERTIE based' course ..... and we were all on MDI .....
 
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