Diabetic Care Team Issues

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HoneyBear

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Type 1
Round Two, forum ate my post before just as I finished it. (Apologies, it will probably be a novella by time I am finished).

Said hello on the newbies area a while ago and there I mentioned I am waiting on a call from my DSN, morning one... Yeah, go figure. You'll start to see a pattern emerging soon enough.

Right, I'm on MDI at the moment having been put on Lantus and Novorapid several years ago. At the time I had DAFNE training which I lapped up and ran with. All in all those insulins were a life saver. My control became great and I landed myself a HBa1C of 6.1%. I continued with my efforts but these last three to four years have now started to wreak havoc.

It started with our dog dying, gathered momentum with me having to go through two years of laser eye treatment for diabetic retinopathy, one eye was fortunately preventative but my right eye just would not behave. I lost my eyesight as a result of the laser for 6 months. I couldn't tell my family about the laser as there are long running family feuds so my nearest and most trusted relative, my aunt was the only one apart from my hubby who knew. During the laser I was having marital issues (gladly sorted out now) and my grandmother died a rather awful death from lung cancer. Should I mention I had a vessel bleed while we were graveside? Done now, no taking it back! So pretty much my idea of hell.

After everything settled down I developed an issue with my BG. Daily it would reach 33+. I was in what could be considered a panic. I called my DSN daily and left messages on the answer phone. They got back to me a month after I started having issues. Pattern. Forming? Even then their advice was inject more and use shorter gauge needles. I rejoiced in the wealth of knowledge and support.

I didn't actually rejoice. Before the call back I raised my Lantus from 22 units to 30. I did this by trial and error. You have to worry that you're going to raise it too much and blammo on the floor with men in fluorescent jackets surrounding you. So one extra unit, monitor for a day, no change up again. It was slow but I finally got the BG down. I'm now back to 27 units but you can imagine what it has done to my waistline. This is all regardless of the fact I was eating between 40-60 carbs a day in an effort to lower the BG. I love the who's eaten all the pies looks I get even now. Pies filled with lettuce and carrot, made with invisible pastry.

Now the basal is clearly not covering me 24 hours. Experiments I've done make me think it is anything from 18 to 21 hours of coverage. I've trialled all times of day for the best basal hour. 11am came out best because on waking I can correction dose and up my ratios for carbs. (That threw the consultant and dietician, why do you do this? Because if I don't I would run high, explained twice because dietician lady came in late and started bouncing about it).

Finally I have been offered the pump. Partly so late because I was not sure about it (my fault entirely) and partly because I am having such problems now. A year or so ago I was having the same issues but I was seeing a reg each time and they were just note taking 😱

So, Wednesday I went for the firing squad, I mean initial pump clinic appointment. I was told I could only have a Roche Accu-chek Combo (because they are comfortable with it) and the same companies infusion sets. I asked, what if I have problems with these? Skin irritation and just their design inside me. We'll find a "dressing work-around". I kid you not. More pattern?

I've had really bad issues with Roche BMs, to the point that it was dangerous so you can imagine how I feel about strapping their pump to me 24/7. Willi E. Coyote strapping himself to a stick of dynamite kinda feeling.

Yesterday I called Input and Animas (my preferred pump provider from all my research waiting for my appointment). I got great information and advice about fighting to get a different pump. In fact I was buoyed back up again about the whole prospect. Dare I say a little giddy?

I called the centre. I was promised a call back this morning. This morning is a dwindling second hand spinning over the horizon. Frustrated. V. Much. Angry. Little bit in my toes. Searching for a cliff to conveniently fall off? I've considered it but I am pretty much in the middle of landmass.

SO everyone. Thoughts. Opinions. Virtual chocolate that won't make my BG climb, all very welcome right now. And thank you for reading my marathon post. I salute you for your grim determination 😱

Just to note... no phone call...
 
Hope you can win the fight to get the pump you prefer. I can sort of understand that a clinic might prefer a particular supplier, but I would have thought that very quickly YOU become the expert on the pump you are using, with access to the manufacturer for support, and sharing experiences on forums such as this.

Any possibility of changing clinic? It sounds like you were doing OK until things started to go wrong for you and you actually needed their help, at which time they failed to provide it :( You will get lots of support here, so hopefully we can fill in where they leave gaps. Good luck! 🙂
 
WOW, you have had a very busy time with it all.................glad you have came through it all smiling...........

Did you ever try to split your background dose...........?

Well, its going to be hard work with the pump to begin with, but I am sure a veteran like yourself will settle in really quickly.........

there are lots of pumpers on here who know it all and can help you with anything you need..........

Good luck with it all............🙂
 
Up until the point at which I needed them I didn't want for much help. I'd learnt most things through having D for so long. But now when I do need them. Well yeah.

I had an interesting conversation with Leslie at Input. I mentioned the whole comfort thing with the clinic and she pretty much said. After day one of being on the pump there is no reason for a DSN or any other clinical staff to even touch your pump. Give advice on changes to the insulin profiles through informing you, but not actually physically doing it themselves. If you have mechanical issues, you go to the manufacturer.

I am told that the paediatric diabetes is highly rated at the hospital I go to. But adults seem to get a bum deal. Most children are on the Animas there so they do know about them, they just view a pump is a pump.
 
What a story! At least you have come through so far with your sense of humour intact. I hope you get that phone call soon and that you get sorted with the pump quickly. I'm sure more pumpers will be along soon with lots of encouragement and advise. I'm just off to welocome you properly on your 'hello' thread. 🙂 XXXXX
 
novorapidboi26 said:
WOW, you have had a very busy time with it all.................glad you have came through it all smiling...........

Did you ever try to split your background dose...........?

Well, its going to be hard work with the pump to begin with, but I am sure a veteran like yourself will settle in really quickly.........

there are lots of pumpers on here who know it all and can help you with anything you need..........

Good luck with it all............🙂
Click to expand...

It's when I stop smiling, people around me worry. I got a bit like that on Wednesday.

I tried to split my dose on several occasions using information I found myself. Both times it made me feel totally sick. Like nausea from the moment I woke till the time I slept. I tried all sorts of combinations but nothing ever came to fruition. I am guessing that the overlap created by the fact it wasn't made to run 12 hours had a cumulative affect. I started on Levemir when I changed over insulins and I had the same problem, that made me actually physically sick. No one ever came up with why it should have done that or a new plan of attack.

Thanksfor the luck, I reckon I am going to need it.
 
HoneyBear said:
I am guessing that the overlap created by the fact it wasn't made to run 12 hours had a cumulative affect.
Click to expand...

Just shows you everyone is different as I actually use this overlap in my fight against the Dawn Phenomenon.....

😉
 
novorapidboi26 said:
Just shows you everyone is different as I actually use this overlap in my fight against the Dawn Phenomenon.....

😉
Click to expand...


It sure does, can you tell clinicians that please?! 😱
 
HoneyBear said:
I am told that the paediatric diabetes is highly rated at the hospital I go to. But adults seem to get a bum deal. Most children are on the Animas there so they do know about them, they just view a pump is a pump.
Click to expand...

Wow, what a palaver! I hope you will get what you want in the end.

When I read this sentence, I thought that that's our clinic. At our kid's clinic we get the Animas, no choice given. We weren't too bothered, as long as we got one...

I have to say too, that I was surprised that one time in the waiting room I saw an adult with a combo and thought how come he has a combo and we have to have an Animas??? But to be honest, the Animas 2020 is good and I guess the Vibe is even better (our DSN claimed not to know about the Vibe though)
 
Pump choice is a very personal thing isn't it. I hope you are able to get the model that you are after, though from the sounds of things a Combo (and I know some folks who aren't keen on Roche meters who have and *love* their Roche pump) would be much better for you than sticking with MDI.

AFAIK most are compatible with a variety of sets (both the pump manufacturers and 3rd party I think) so you ought to get some options even if it's a Roche pump.

If you want to give yourself some food for thought before your pumping adventure begins I'd suggest you get hold of 'Pumping Insulin' by John Walsh.

The first 13 chapters are brilliant at getting you mentally set up and ready to start so that you'll be able to know what to expect and give you a good grounding before you get together with the pump clinic/pump trainer etc.
 
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I think that if you're choosing something which you cannot get away from 24/7 you need to be comfortable with that technology. Especially one which is with you and attached to your body like an insulin pump is. I agree that it's a very personal thing.

Thank you for the book recommendation, I ordered it on Wednesday after seeing it dotted about on all the diabetic forums I have been stalking 😱

I've had a call. I was told pretty much no. But the crazy part was that for legal reasons they will not let people use different brands of infusion sets. I am wondering if this is down to legal reasons as part of the contract they have with them? When I said I had read about other pumpers doing this throughout the country she said she had never heard of it. There again she and the DSN had never heard of Input. It's hard to have confidence in a clinic that left me so long with high BG issues.

I don't know. Am I making a big deal about nothing? It just doesn't feel right to me to be forced onto one brand of pump. I start to think about people who just cannot get pumps period and start to feel selfish about it all.
 
HoneyBear said:
It just doesn't feel right to me to be forced onto one brand of pump. I start to think about people who just cannot get pumps period and start to feel selfish about it all.
Click to expand...

It's not the first time I've heard of a clinic sticking to just one manufacturer. I seem to be very lucky in that the clinic I go to seems to have people on pretty much all of the pumps their are (I'm due to start November). Postcode lottery again I guess.

Sometimes it seems to be a 'deal' struck with the PCT and the Pharma co to get the kit cheaper in return for an exclusive deal (as seems to be happening more and more with meters). Maybe it makes support etc that much easier too - otherwise they'd have to keep up with everyone's changes all the time?
 
Honeybear

There isn't a legal reason for not using 3rd party infusion sets on a pump, the only hitch is that if you get a pump problem then the manufacturer will attempt to void the warrenty, they use the excuse that they've not tested the pump with a 3rd party infusion set.. But there is a good chance that the 3rd party infusion set comes from the same factory as the pump manufacturer, as pump companies don't own the factory but contract out to have them made to their specifications! So one factory could be supplying luner infusions sets to several different pump manufacturers..

I am buffled though by how one can be alergic to test strips (roche BM):confused: I don't think that you can compare BG test strips to infusions sets as totally different things and materials being used etc..

All pumps have to comply with the very strict regulations set out by authorites such as the FDA, European licence ect... So on reliabity score they are all the same.. And very reliable piece of kit..

The choice between pumps are really down to, do you like them menu set out, screen size and text size rather than particular features such as does delivery etc like it used to be.. Yes Veo etc do have CGM sort of built in but this is only communication side there is still an expense of providing the monitors/communciation kits and then the sheer cost of buying the sensors.. With no guidelines and PCT's only funding CGM sensors of a special needs case... Unless you've got deep pockets this isn't a real consideration or buying point...

Yes you supposed to have a choice of pumps, in reality most clinics work on one or two main pumps a lot of this is due to setting up favourable contracts of supply to keep costs down. But also for every pump manufacturer they use they have to have computer software and be trained using that software etc... Again another hidden cost to the clinic

I wasn't chuffed to find that after 3 years of battling hard to get my pump, I was told I WOULD be getting the Accu-Chek Spirit, I broached the 'can I have the Animas, I feel that's going to be more suitable to my needs' it was more than apparent that if I chose not to accept the Spirit two things would happen... I would have to battle for my choice and the PCT would say, Err if an insulin pump is so essentrial to your control then you take whats on offer! Which would have been fair comment, after all a pump is a pump and they do all the same thing... Deliver insulin in a more controlable way!

The idea of a pump is that 'we' take full control over our managment we make all the decisions, your team apart from doing the education side of things concerning pump therapy, have no other say or need to touch your pump unless of cause they are downloading your data to their computers..

As to learning curves etc when you start..

Well really dependant on the individual..

Can't say that I found it difficult at all nor any more intensive than my MDI regime in fact I took to pumping like a duck to water according to my team, who have never had any input into pumping apart from showing how to set it up the first time.. I will say though I knew exactly where my problems lay with control, all worked out while I was on MDI, I had a very good understanding of diabetes, insulin profiles, the food I ate and it's actions etc I had also done a lot of reseach into insulin pump therapy and not just the specification of a pump...

A lot of people start on pumps, not having a clue to what is the problem behind their control, they have no idea about insulin profiles, little knowlege of carbs or it's adorbtion profiles etc... Worse ones are those who heavily rely on their DSN for managing their control...
 
Ellie Jones said:
Honeybear



I am buffled though by how one can be alergic to test strips (roche BM):confused: I don't think that you can compare BG test strips to infusions sets as totally different things and materials being used etc..
Click to expand...

Sorry didn't explain this very well. The meter gave me false readings. To a point I had several hypo attacks when I thought I was perfectly fine by the tests I was doing with the Roche meter.
 
Honey bear I see now LOL

I did invisage that it was the chemical reagent in the pad of the old BM stick, but then I was think would it be enough contact etc... A brain whirl back to the old days, when stabing your finger was litual when the old flat oblong lancets (or should I say razor blades) really did shread your fingers tips😱 I digress..


I've used both the Compact plus and the Nano meters never gave false reading but did have several replaced, the Nano has a know issues with the battery contacts... But the Meter/Remote I've been really pleased with it's profermance almost a year in without an hitch.. I only ever use one meter for testing don't believe in the home meter and then one in the office.. So I compare the meter adverages against my HbA1c result so I have a reasonable idea what my HbA1c will be.. The remote has been the most accurate of any meter make I've used.. Being 0.4 out... When I had my bloods done last time, I noted my meter before the test reading 6.3 so was sure it was out so plesently chuffed with a 5.9% HbA1c... Constant with the difference with the first HbA1c comparison I did with the meter which I wasn't a full test due to only been using it for 2 months..
 
Ellie Jones said:
Honeybear

There isn't a legal reason for not using 3rd party infusion sets on a pump, the only hitch is that if you get a pump problem then the manufacturer will attempt to void the warrenty, they use the excuse that they've not tested the pump with a 3rd party infusion set.. But there is a good chance that the 3rd party infusion set comes from the same factory as the pump manufacturer, as pump companies don't own the factory but contract out to have them made to their specifications! So one factory could be supplying luner infusions sets to several different pump manufacturers..

I am buffled though by how one can be alergic to test strips (roche BM):confused: I don't think that you can compare BG test strips to infusions sets as totally different things and materials being used etc..

All pumps have to comply with the very strict regulations set out by authorites such as the FDA, European licence ect... So on reliabity score they are all the same.. And very reliable piece of kit..

The choice between pumps are really down to, do you like them menu set out, screen size and text size rather than particular features such as does delivery etc like it used to be.. Yes Veo etc do have CGM sort of built in but this is only communication side there is still an expense of providing the monitors/communciation kits and then the sheer cost of buying the sensors.. With no guidelines and PCT's only funding CGM sensors of a special needs case... Unless you've got deep pockets this isn't a real consideration or buying point...

Yes you supposed to have a choice of pumps, in reality most clinics work on one or two main pumps a lot of this is due to setting up favourable contracts of supply to keep costs down. But also for every pump manufacturer they use they have to have computer software and be trained using that software etc... Again another hidden cost to the clinic

I wasn't chuffed to find that after 3 years of battling hard to get my pump, I was told I WOULD be getting the Accu-Chek Spirit, I broached the 'can I have the Animas, I feel that's going to be more suitable to my needs' it was more than apparent that if I chose not to accept the Spirit two things would happen... I would have to battle for my choice and the PCT would say, Err if an insulin pump is so essentrial to your control then you take whats on offer! Which would have been fair comment, after all a pump is a pump and they do all the same thing... Deliver insulin in a more controlable way!

The idea of a pump is that 'we' take full control over our managment we make all the decisions, your team apart from doing the education side of things concerning pump therapy, have no other say or need to touch your pump unless of cause they are downloading your data to their computers..

As to learning curves etc when you start..

Well really dependant on the individual..

Can't say that I found it difficult at all nor any more intensive than my MDI regime in fact I took to pumping like a duck to water according to my team, who have never had any input into pumping apart from showing how to set it up the first time.. I will say though I knew exactly where my problems lay with control, all worked out while I was on MDI, I had a very good understanding of diabetes, insulin profiles, the food I ate and it's actions etc I had also done a lot of reseach into insulin pump therapy and not just the specification of a pump...

A lot of people start on pumps, not having a clue to what is the problem behind their control, they have no idea about insulin profiles, little knowlege of carbs or it's adorbtion profiles etc... Worse ones are those who heavily rely on their DSN for managing their control...
Click to expand...

Well said! 🙂
 
I agree with all Ellie said except this bit :-
PCT would say, Err if an insulin pump is so essentrial to your control then you take whats on offer! Which would have been fair comment, after all a pump is a pump and they do all the same thing... Deliver insulin in a more controlable way!
Click to expand...
I have a lot better control with my 2nd pump due to being able to alter the basal rate by 0.025u rather than 0.05u 🙂 That small reduction made all the difference for me.
 
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