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sensitivity and supply issues

endocrinegremlin

Well-Known Member
Messages
433
Location
Scotland
Type of diabetes
Type 1
Treatment type
Pump
Dislikes
People telling me how to control my diabetes. My health. Isms. People walking their dogs off leads in illegal areas. Meat that bleeds. Late buses.
Hi!

I use the medtronic minimed 640 pump.

I am having real issues with the mio infusion sets and sets in general. My body rejects sites after two days. They become painful, inflamed and swollen. After removing the site that part of my abdomen hurts for several days. My 'DSN ' (she was a nutritionist and still wears a uniform saying that ) nurse is a problem with this. I have mentioned this for years. The animas vibe presented the same problem. My body just will not accept a site after two days. It may be due to my eczema but even the medtronic site says the sites are meant to last 2-3 days. She insists I must be inserting them wrong and hauls me in time after time to demonstrate me putting a site in. Funnily enough after years on the pump I know how to put one in. Set failures are common with this insert and I have reported it to medtronic who have acknowledged that. I have said to my nurse that the sites don't last. She refuses to extend my funding (NHS) so that I may get extra sets.


She seems fixated on the idea that I am doing something wrong. If a set works three days I pull it out to puss. I can't leave them that long but I don't have enough to change them every two days. I can't afford to go private. I tried at one point to use mdi a few days a month to balance it and got a rude reminder of why I had my pump. I could hardly leave my bed.

I don't know what to do. I have tried to phone my diabetes department but no one answers the phone. It is all voicemail. I don't want to leave a complaint that my nurse will hear. It all makes me anxious which makes my diabetes worse.

I am in Scotland, so that is the NHS I am dealing with.

Thoughts?

It took a lot for me to write this so please be gentle.
 
Sorry to read about your problems. It must be incredibly frustrating.
I have an idea of how you must feel - I am still on the Animas and find my cannula gets very itching after 2 days so change the sets more frequently than advised. Thankfully, I have an understanding DSN who does not complain (and is a DSN rather than a dietician).
I understand Medtronic have a variety of sets that they offer and I think people have said they have had trials of different sets including metal ones which seem to be better for people who have a reaction to the plastic ones.
I am wondering if you could contact Medtronic and request to trial some different cannulas. I have spoken to Medtronic a few times now they have taken over the Animas supplies and they seem friendly (although not as friendly as the Animas team).
Temporarily this would give you an extended supply and may provide you with an alternative that your body does not reject so you can satisfy your DSN's (and probably CCG's) rations.

Another suggestion may be to go through another painful round with your DSN showing you how to insert them and take photos of the results to send to her as proof.

Good luck ... and I hope I was gentle.
 
@endocrinegremlin the fact that you are in Scotland has nothing to do with your problem. I think your so-called DSN is the problem, as she insists your Mio should last 3 days. I attend a Glasgow hospital and have been using the pump for 9 years. From the early months, I have had to change my set every 2 days, as my blood sugars would be in double figures on day 3.

Your problem is different from mine, as your skin seems to react to the set. It's a good idea to try different sets, especially the Sure T that @Juicyj mentioned. However, you might have a problem when asking Medtronic for sample sets. When I asked to try the 6mm Mio, as I'd been having pain in some sites with the 9mm, I was told they couldn't do this without permission from my DSN. The fact she was on holiday didn't help matters.

Ask your "DSN" to try different sets and if she still blames you, ask to speak to her superior. If you don't get any satisfaction, ask for a copy of the complaints procedure and take it further.
 

I mentioned where I am to show I don't get the same flexibility in pumps as others do. It seems others in the UK or abroad are able to go in and say 'this pump doesn't work for me, I want to try this one'. Certainly in my region you get what you get and that is what. So you are pinned down from the start. Thanks for the advice though.
 
We're not suggesting different pumps, only different infusion sets. The Mio doesn't seem to suit you but there are others available to try. Your DSN should be able to arrange for you to try other sets (if Medtronic won't send them out to you).
 
endocrinegremlin said:
This is very helpful thank you
Click to expand...

It's the teflon in the mio which causes the issue, I even tried Cavlon spray before I eventually gave in, it was giving me swollen lumps around the insertion point and red swells on the skin which last over a week, my tum looked a mess, i've not had any issues since with the sure t - except bad sites. It took me about 3 months to finally do something about it, talk about perseverance ! I also had lots of kinks too, so was wasting sets, haven't looked back since. The sure t is for people who have a reaction to teflon so it's the best set out of all of them for managing this issue.
 
dancer said:
We're not suggesting different pumps, only different infusion sets. The Mio doesn't seem to suit you but there are others available to try. Your DSN should be able to arrange for you to try other sets (if Medtronic won't send them out to you).
Click to expand...

I know but I have seen before that if such issues arise people ask what other pumps are available. I only tried to make it clear there are no others for me. I have to find a way to make this pump work. As such, different sets and arguments I can put forward and who to are helpful. If someone comes along and suggests I use the accu check pump it isn't.
 
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