How to ask for a pump?

[Garthion]

I have my next (all too frequent) clinic appointment on the 11th of April, followed the next day by yet another DSN appt (different hospital) but want to ask my Diabetes consultant about a pump. My HbA1c has been high for way too long (since 2002 in fact) but I've started lowering it with a lot of very hard work (was 10.3% in December down from 15% a year before) the problem is, I don't know what to say, I've been thinking about asking for a while but never seem to get the oportunity, some doctors/consultants just want me to show my face, look at my bloods, tell me off and show me the door. Though there are two who I feel I can talk to, and I believe will listen to me and I hope that I get to see one of them next month.

My thoughts on what to ask go along the lines of
"I want to try an insulin pump, I think it will help my control better than the multiple injectios."

Last time I asked my (old) DSN she flatly refused to consider it (It was 6-7 years ago) and made me feel as though it was impossible, I've learnt a lot since then, mostly from here, but also in Balance (next issue is out on the 12th of April, I have purposefully stocked this at work) and now know that Pump therapy has certain criteria and I certainly meet many of them, my major hypo of 1.2 today shows how low I can go, and my HbA1c just won't go lower

Is there any more advice? Suggestions on what to say?

/thank you all in advance

 

[Northerner]

Hi Dale, I think the best thing you could do, as well as gathering the thoughts of people here, would be to get in touch with INPUT http://www.input.me.uk/ - I have heard that they are very good at getting back to you if you email them and they have an excellent knowledge of how to present your case for a pump 🙂

 

[Unicornz]

Hiya Dale,

I completely understand what you mean. It's really frustrating when you know you are doing absolutely everything you can and you just can't seem to get it under control. I've gone through exactly the same since I got diagnosed in 2002. I've actually started on my pump yesterday and I can tell you that I can already see a difference, even without all the tweaks having been made in my basals and probably using the wrong bolus ratios.

Anyway, what I would suggest is that maybe, rather than asking for a pump straight away, it might be worth informing about a CGM first (Continuous Glucose Meter)? I wore one for three days a few months ago before my DSN decided that I did indeed benefit more from a pump. With a CGM your doctors will be able to see exactly how your glucose levels act all throughout the day and night. In my case, they spotted I suffer from dawn phenomenon which means my BG starts rising quite steeply an hour before I wake up, I also tend to get inexplicable spikes after lunch time.

Asking for a pump is a big step and not all hospitals are very willing to consider it unfortunately, as you mentioned. Maybe if you can get a CGM it provides your DSN with some hard evidence and that might make it easier for you to start discussing the pump!

Best of luck, I really hope you can get one! 🙂

 

[Freddie99]

Pin down the consultant. Hold knife to the testicles. Simple.

 

[Garthion]

Hiya Dale,

I completely understand what you mean. It's really frustrating when you know you are doing absolutely everything you can and you just can't seem to get it under control. I've gone through exactly the same since I got diagnosed in 2002. I've actually started on my pump yesterday and I can tell you that I can already see a difference, even without all the tweaks having been made in my basals and probably using the wrong bolus ratios.

Anyway, what I would suggest is that maybe, rather than asking for a pump straight away, it might be worth informing about a CGM first (Continuous Glucose Meter)? I wore one for three days a few months ago before my DSN decided that I did indeed benefit more from a pump. With a CGM your doctors will be able to see exactly how your glucose levels act all throughout the day and night. In my case, they spotted I suffer from dawn phenomenon which means my BG starts rising quite steeply an hour before I wake up, I also tend to get inexplicable spikes after lunch time.

Asking for a pump is a big step and not all hospitals are very willing to consider it unfortunately, as you mentioned. Maybe if you can get a CGM it provides your DSN with some hard evidence and that might make it easier for you to start discussing the pump!

Best of luck, I really hope you can get one! 🙂

I had CGM last month, got to wait till next month for the results (bit daft really) so I think I'll just come straight out ang ask for one, lets see how it goes

 

[Unicornz]

I had CGM last month, got to wait till next month for the results (bit daft really) so I think I'll just come straight out ang ask for one, lets see how it goes

Ahh right! God that's a long time to wait when I went back in they downloaded my results straight onto the computer! Well, let's hope something comes out of that then! Best of luck at the hospital let us know how it went 🙂 I'll keep my fingers crossed for you!

 

[Ellie Jones]

I would just ask for it...

How much research have you've done on them, as it best to explain how you feel the pump will be benefical to you...

If you print of you BG results and high-light hypo and/or hypers so that perhas you pick out a hypo... and explain what happened, i.e I had my meal injected my dose appopiately my work load was light, but after dinner work load changed causing hypo... If I had a pump I could have avoided or limited the degree of the hypo as I could have turned my pump down!

Another example, I can't with injection even with a split of background, create a reasonable flat basal profile, the effect of this is at times I'm swimming in insulin then not enough.. Trying to work out where I am on this wave on the top of it or in the trough etc is very difficult.. But with a pump I can fine tune my basal to create a flat basal to work my bolus insulin from a lot better..

You might be lucky and surprised as your consultant might say Yes..

If not you will know what you have to do or what battle you might have to fight to get one..

And if it comes down to battles they can be won, I won my battle did take best part of 3 years but I won, been pumping now for almost 3 years getting excellent results or has my consultant said last week... control doesn't get better than that!

 

[Copepod]

Pin down the consultant. Hold knife to the testicles. Simple.

Might be a woman 🙂 Not condoning violence or threats, by the way, not that TomH was, either, I'm sure.

 

[Pumper_Sue]

Dale,
The best thing to do is go in armed..........
All test results
Also write down what you have done to correct your problems
Show you understand carb ratio's
Correction factors
Also tell them what you expect to gain from a pump and what work you need to do whilst on a pump.
Do some research on a pump so you understand it's workings.

Remember the word NO does not exist when wanting/needing a pump.
So keep on at them. If no joy then ask your GP for a referal to a pump friendly clinic.

 

[Phil65]

Hi Garthion,

Unfortunately every hospital/clinic/DSN/Consultant has different opinions about who is right for a pump, they often don't stick to NICE guidelines! My control has always been pretty good, I have always been positive about my diabetes and have worked really hard to maintain good control. My team have approved my plea for a pump..... I pestered them for some time!! And get it in a couple of weeks. For me, I had to prove that I understood carb counting, Carb/insulin ratios, correction doses, I had to attend a 'DAFNE' type course which ran for 6 weeks one day a week,my team ran it and they realised I knew and understood about diabetes. I do wonder why your levels are so inconsistent if you are applying all of the above and are regularly testing?? Carb counting was a relevation for me......without it, it was always an educated guess how much insulin I needed!
I hope you are successful in getting a puimp and more importantly you get your levels better! 🙂

 

[Unicornz]

I do wonder why your levels are so inconsistent if you are applying all of the above and are regularly testing??

This just happens to some people. I experienced exactly the same, no matter how much effort I put into trying to get my levels under control with normal injections, I just couldn't. After I had a CGM it turned out that a few things happened to me during the day that just weren't fixable with normal injections. First of all there's the dawn phenomenon which you can only combat with a pump, then they found out I get high spikes right after my lunch (no matter what I eat) which then come back down after two hours so they never showed up on my tests before. These spikes can't be dealt with with normal injections either, because when you take more insulin it might get rid of the spike but it means you will drop too low later on.
Diabetes is different for everyone! Some people are able to control their levels with normal injections perfectly, but others just can't. Not something we do wrong, it's just how it is sadly.

 

[shiv]

I don't think Phil was implying anyone is doing anything wrong 🙂

Sometimes people come on here, or on the FB site, wanting a pump because they have swinging levels - then it turns out they do not adjust insulin, or do not count carbs, etc - so sometimes it's just worth reminding people that a pump isn't a magic wand, it can't just fix everything and to prompt them that things such as carb counting and regular testing are absolute essentials 🙂

I totally agree that some stuff can't be managed on injections. It's why I pushed so hard to get a pump. I proved to my team time and time again that injections were not working for me despite best efforts - carb counting, adjusting insulin, regular testing, basal testing etc 🙂

 

[novorapidboi26]

For me it simply the dawn phenomenon, the rest of the day can be managed fine, or at least good enough to get a good HbA1c.

But the morning pushes it up and I feel like s*it........

If the opportunity comes along, grab it, you can learn all you need to know as you go......🙂

 

[Garthion]

I've been adjusting my novorapid doses for around 2 years now, at first varying the dose by meal size (which didb#n't work) then by carb-counting after using the BDEC site to learn how (Up until recently I had never been offered a place on a course)

I'll see what the CGM shows but will still ask about a pump
I know that it entails more work, but I'm prepared for that.

 

[novorapidboi26]

I've been adjusting my novorapid doses for around 2 years now, at first varying the dose by meal size (which didb#n't work) then by carb-counting after using the BDEC site to learn how (Up until recently I had never been offered a place on a course)

I'll see what the CGM shows but will still ask about a pump
I know that it entails more work, but I'm prepared for that.

if you don't ask, you don't get..........maybe the asking for a pump will at least get you on a course like DAFNE, as its really a requirement I believe....

Good luck in your quest....😉

 

[ypauly]

Hello garth, my next appointment is on the 11th 3:30 at good hope.

I was thinking of asking about pumps aswell, but i'm not sure if they are a good idea with being a driver as hypos seem to be more common.

ETA I find out about my dafne course on that date too.

 

[novorapidboi26]

Hello garth, my next appointment is on the 11th 3:30 at good hope.

I was thinking of asking about pumps aswell, but i'm not sure if they are a good idea with being a driver as hypos seem to be more common.

ETA I find out about my dafne course on that date too.

Never thought about that, if I was on a pump I wouldn't expect more hypos, but what is the law, is it just the same regarding licenses...

 

[shiv]

Paul, the idea is with a pump that you dodge those hypos, using the pump to help you 🙂

 

[ypauly]

Never thought about that, if I was on a pump I wouldn't expect more hypos, but what is the law, is it just the same regarding licenses...

To have a pump you would need a very high level of control, current license requirements mean you have to be able to demonstrate that control if asked to do so. (I assume by a copper

) and also that you have tested before driving.

So you need to be able to asjust insulin and count carbs which I do in a small way at the moment.


There is also my line of work that needs to be considered as I climb over big machines and use a crane slinging moulding tools that weigh upto 10 tonnes about.


So I have many questions to ask, but the dafne course will be important for me.

 

[shiv]

DAFNE is fab 🙂

I'm a bit confused by what you mean by 'to have a pump you would need a very high level of control' - pumps are another method of delivering insulin, as they are more refined than injections they can help gain better control, but they aren't magic wands and don't fix all the problems - there are still lots and lots of children I know that have hypos, hypers, etc on pumps - sorry if I have misunderstood?