# Bdec restricions on consumables



## bex123 (May 28, 2011)

hi all , just popping my head back in to give a heads up to anyone using a pump under Bdec care , i recived a letter this morning telling me they are restricting the ammount of consumables we order
list as follows
2x boxes (20) flexlink cannulas per 3 months
2xboxes (20) flexlink cannulas with out tubing per 3 months
1 service pack per 3 moths (this inludes 3 AAA batterys for handset and 1AA for pump plus battry cover and cartride adapter
4 boxes(5 per box) cartridge ...epected usage 1 insulin cartridge per 6 days!!!!!!!

Im fuming , they are leaving no room for error or accident or cannula failure....and those on a lot of insulin or a large basal dose P/h are going to run out of cartrides! i use a cartride rougly ever 4 days
also they expect the tubing to last or not be damages for what works out nearly 5 days!

i have writen a letter back with these points
*over night cannula failure/disconection
*failed cannula changes.... sometimes you hit a nerve and they really hurt or the cannula bends
*stretching the tubing .....dropping pump(while attached) catching tubing on door handles...draws/cupboard (it does happen)
1st port of call ( recomended by Bdec) unexplained high blood sugar do complete set change
*what are 'Average needs' we are all different and use consumables as and when we need them we cannot be all lumped together with an 'Average use'

what do you guys think....im rather miffed!


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## Northerner (May 28, 2011)

Hi bex! Well, I'm not on a pump, but placing restrictions, especially such tight ones, on the necessary items to use your pump properly (or at all!) seems downright dangerous to me. As if you don't have enough to deal with without worrying about whether you should change something that is causing pain or discomfort, or perhaps not working properly. It's as bad as asking someone on injections to only test before injecting and always get it right because you won't have enough strips to test later if you go low or high or whatever.

I'm surprised too that it is BDEC making this rule, I always thought they were considered one of the best and very pro-pump. Have you contacted Input to see what they say, and if they are able to apply any pressure?

http://www.input.me.uk/

Hope they can be made to see sense, thanks for letting us know about this.


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## bex123 (May 28, 2011)

yeah , ive written a letter to Bdec and will be phoning them first thing monday my dsn is pretty good and have a feeling this is beyond their control and comes down to the 'funding' issue instead. but it does seem rediculous to lump us all together with an 'average usage figure'.....surely there is no such thing as average use.....our doses/basal rates/cannula life is all different.So will have to see what they say....the letter did state that this doesn't come into effect till september so am seriously considering over ordering between now and then....  just to make sure im covered up till xmas atleast...but i suppose that doesnt solve the problem long term, thing is all i require is an extra box of cartrides and extra box of cannulas on top of thier maximum fuigue so its not that much to ask really , will definatley look into contacting imput if this cant be resolved, thanks for the idea


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## Northerner (May 28, 2011)

Absolutely! How many times have we heard the phrase 'we are all different'? And I would have thought that applies even more to pump users, since usually the very fact you are on a pump means that your needs are more complex than someone who can manage happily on injections. Good luck


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## Pumper_Sue (May 28, 2011)

bex123 said:


> hi all , just popping my head back in to give a heads up to anyone using a pump under Bdec care , i recived a letter this morning telling me they are restricting the ammount of consumables we order
> list as follows
> 2x boxes (20) flexlink cannulas per 3 months
> 2xboxes (20) flexlink cannulas with out tubing per 3 months
> ...



I suspect they have looked at the very high wastage and costs and decided enough is enough.
sets cost the PCT ?75.10 + VAT without tubing/box (10)
                         ?87.10 + VAT with tubing/box (10)
Cartridges            ?11 +VAT/box 5
               or       ?49.95 =VAT/box 25

Service pack       ?46 + VAT
This is just for the Roche pump.

Cartridges can be used for 6 days no problem. Just reuse it. Tubing there is no reason not to use for 6 days either.

Unless using apidra then all needs changing every 2 days.
Not sure how you manage to damage your tubing  Keep it tucked in your clothing out of the way. Use a bit of tape to make a loop (like a hose reel) if to long if afraid it will be pulled from the cannula again anchor it to your skin. MEFIX tape works wonders.
I use 13 boxes of cannula's over a 1 year period with no problem at all.
Cartridges I use a couple of boxes a year (25 box) 
But as you say they have lumped everyone together and should sort out expected usage for the amount of insulin used etc.

I do urge people that have set failures due to non stick or fault on cannula part to ask for a free replacement. As far as I am concerned they are faulty goods and thus should be replaced free of charge, and not paid for by the pct.

But looking at your figures they are saying 16 boxes per year for cannulas. That is more than generous I would have thought for anyones needs.


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## Catwoman76 (May 28, 2011)

bex123 said:


> hi all , just popping my head back in to give a heads up to anyone using a pump under Bdec care , i recived a letter this morning telling me they are restricting the ammount of consumables we order
> list as follows
> 2x boxes (20) flexlink cannulas per 3 months
> 2xboxes (20) flexlink cannulas with out tubing per 3 months
> ...



That's terrible bex, how are you supposed to healthy and safe when they put down dangerous restrictions.  Well done for writing a letter, anybody on medication needs the full and proper equipment/medicines.  Keep on at them bex and I hope you get a productive reply.  Best wishes Sheena


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## Ellie Jones (May 28, 2011)

I actuall use the tenderlinks, but the flexilink is the same teflon cannular so only needs changing every 3 days but apart from that I get the same order sent to me..  Which I find is more than enough with the exception of one occassion..

So you need 11 sets for a month, working it out you get 7 sets as spare's per quater, I have over time got quite a stash of spares infusion sets...  Never had problems with batteries not lasting their stint, always have at least one set in reserve when order arrives..

Cartridges are a different matter has yes they are dependant on what you use on a daily bases, mine last over a fortnight 

I very much suspect that one of the purposes behind this letter is to indentify those pumpers that might be having problems by their ordering patterns...

Because if you are going through loads of cannulars, then obviously there's a problem somewhere which needs to be looked into to see what can be done to resolve it..

And of cause to indentify those who are over ordering and stock piling very expensive consumables..  Just imagine that somebody constantly orders more than they need, it doesn't take long to get a grands worth of over stock in the cupboard, if every pumper doing this it  really stacks up and could actually prevent new pumper getting a pump!


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## trophywench (May 28, 2011)

160 cans in a year, if nowt goes awry you use one every 3 days - that's 122 - so gives the opportunity rate for failure of 1 in 3 cans.  That's a lot of failures and needs to be looked into if it does happen, which I don't believe it does ...

But anyway, have you thought that this letter has gone out automatically to everybody and if your need is both genuine and necessary you need to discuss it with your team and I should imagine they can override it as long as it isn't willy nilly.  If it's user error or something that further training could help with, or like Sue suggests, looping the tubing - whatever it takes.  Babies grab stuff - like they wrench glasses sideways off your face - there is seldom damage except to your dignity and one ear ..... and pumping parents say much the same about pump tubing. 

Perhaps it is exactly like the letter I got recently from my GP surgery - but really from a computer in Weymouth LOL - castigating me for not going for a cervical smear since 1998 when I first registered with them.  Since they know my cervix was last seen in an operating theatre prior to going into the messy clinical waste bin, I'd like to see anyone get one off me!  The surgery attempt to get the relevant box unticked in Weymouth every time !

Talk to your team, Bex.


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## trophywench (May 28, 2011)

Do you think Ellie, that it's people who requested a 'standing order' from Roche - where they supply the same every month rain or shine - and have never thought to change it, who could be over ordering?

I was told a) not to do that till we see what we actually need and b) under normal circs only to do a tubing change every 2 cannulas.  Reservoirs now that does depend on individuals of course and there could be huge variances.  Which is why I think it's a computer!  LOL


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## Ellie Jones (May 28, 2011)

Trophy

Yes rouche will send out standing orders come what may unless they are told otherwise... And this is where the problem lays as it relies on the customer phoning through to make the amendments.. And if you aren't paying for the delivery then there's no incentive to make a phone call to adjust the delivery.

You just have to look at what happens with repeat prescriptions and the money involved with patients picking up every month when they don't need or use items anymore, costs the NHS a fortune..


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## SilentAssassin1642 (May 28, 2011)

roche started sending me out standing orders but told them not to bother because a) they got it wrong the first time they did it and b) i don't go through that much and so quickly.

I'll be annoyed if I get the letter for sure. But thankfully I have enough spares of cannulas and don't go through cartridges very quickly. Plus still got loads of the flexlink plus which they told us not to use also (use them if something goes wrong).

I feel like I barely ever order stuff anyway


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## trophywench (May 28, 2011)

Swot I thought Ellie.

Funnily enough we had a podiatrist at the last local DUK meeting I went to, don't go to all as some of the speakers - and strangely the ones higher up the food chain locally seem to be worse - I wish to batter.  They also have immensely frustrating cookery demos which is really lovely of the person that does them but when you say 'how many carbs?' she hasn't a clue and doesn't appear to understand my - and certain T2's - anguish - I shouldn't really try any of the samples, let alone decide if they are nice enough to add to my repertoire.  Yes I can work it out with the aid of my Collins Little Gem book, but by the time I've done that all the samples have been wolfed down by those who don't care anyway LOL.  The higher up the food chain persons fortunately are not my Experts, I have the fortune to own a house where I can actually get my healthcare from another larger PCT - which brings its own probs but not so much in my own specialism LOL

Anyway stop wittering - this lady was really interesting and said she thought that one of the recent troubles with the NHS is that it has tried to be all things to all diseases and conditions, so patients present with the most revolting feet that evidently haven't had any TLC whatsoever from their owners and when asked, Well, what have you been doing about this ingrained grime/hard skin/corn/toenail/fungal infection etc etc Mr/Mrs/Ms Patient? reply to say more or less, Not my problem - it's yours and I expect YOU to sort it !  How ghastly to be her .......

She ventured that we all ought to be at least a bit more pro-active - and I agree wholeheartedly!


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## bex123 (May 28, 2011)

Pumper_Sue said:


> I suspect they have looked at the very high wastage and costs and decided enough is enough.
> sets cost the PCT ?75.10 + VAT without tubing/box (10)
> ?87.10 + VAT with tubing/box (10)
> Cartridges            ?11 +VAT/box 5
> ...



I dont doubt that it costs a lot to fund a pump hence why so many people who need one are on a 'forever ' waiting list

i most certainly cannot 'Re-use the cartridges...to do so would A) be unhygenic and B) would require keeping the removable plunger and cap in un sterile curcumstances. With the ammount of insulin i use i use one in 4 days.and like i said there are only 5 cartriges to a box with the accu check combo pump

i myself do not very often have set failures and very rarely do i pull one out...but thats not to say it doesn't happen , and sets can kink or not go in properly..or hit a nerve. That does mean that you cannot give a specific ammount every 3 months as it is actually an uknown ammount , while i do agree it is wrong to 'stock pile' it is also fair to say i personally do not, and only order what i use

i have to change my cannula every 2 days or my blood sugar starts to creep up...this is one of those individual things 

tubing is easily dammaged ...as A) i have a son with aspergers syndrome who likes to chew and tug on things
B) i live in the real world, while i do tuck it in accidents still do happen, you show me a pumper that has never caught the tubing on something and i'll show you a liar lol

i think my main problem is the no room for error or accident rule...this makes me uneasy and i personnaly would not like to be coming up to the end of the 3 months and run out because i have so called 'over used ' in that period...i only ever use what i need


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## Pumper_Sue (May 28, 2011)

bex123 said:


> I dont doubt that it costs a lot to fund a pump hence why so many people who need one are on a 'forever ' waiting list
> 
> i most certainly cannot 'Re-use the cartridges...to do so would A) be unhygenic and B) would require keeping the removable plunger and cap in un sterile curcumstances. With the ammount of insulin i use i use one in 4 days.and like i said there are only 5 cartriges to a box with the accu check combo pumpYou need to check this out as they do supply boxes of 25 as that's where I got my price list from There is nothing what so ever wrong with reusing the cartridge. Put the plunger in the fridge in a plastic bag.
> i myself do not very often have set failures and very rarely do i pull one out...but thats not to say it doesn't happen , and sets can kink or not go in properly..or hit a nerve. That does mean that you cannot give a specific ammount every 3 months as it is actually an uknown ammount , while i do agree it is wrong to 'stock pile' it is also fair to say i personally do not, and only order what i use
> ...



Just recently I was asked by a c.o.w. @ my PCT to justify my usage of supplies as in her opinion I used far to many. 13 boxes a year and cartridges. So if you think you are hard done by   But as already stated you need to go talk it over with your DSN. Or better still talk to your PCT.


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## SilentAssassin1642 (May 28, 2011)

tubing is very easily damaged The amount of times I look at it and its got marks on from being caught in the clip and tugged on a door handle.

also guys, no need to get pernickity over it. I'm with B-Dec too and am horrified that this is happening. I'm glad Bex has come back to let everyone know that this is going on. My hats off to her.


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## Northerner (May 28, 2011)

Well, I don't pretend to know anything about pump consumables, but I do know that people's lives are different, and their requirements are different. It strikes me that letters such as the one that Bex got are simply the easiest way for a PCT to apply reductions, in much the same way as some members have received letters about strips being limited. Rather than examine individual cases they set a figure and send it out to everyone to see who complains. Hopefully, when it comes to those complaints or concerns they will then take the time to assess the personal situations and requirements of their patients, but it can be distressing for people to think they may be left struggling.


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## Pumper_Sue (May 28, 2011)

Northerner said:


> Well, I don't pretend to know anything about pump consumables, but I do know that people's lives are different, and their requirements are different. It strikes me that letters such as the one that Bex got are simply the easiest way for a PCT to apply reductions, in much the same way as some members have received letters about strips being limited. Rather than examine individual cases they set a figure and send it out to everyone to see who complains. Hopefully, when it comes to those complaints or concerns they will then take the time to assess the personal situations and requirements of their patients, but it can be distressing for people to think they may be left struggling.



My worry more than anything is, a pen pusher is going to turn round and say x pumper is not cost effective so we will not fund the pump or consumables.
Cost cutting is the name of the game


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## bex123 (May 28, 2011)

Pumper_Sue said:


> My worry more than anything is, a pen pusher is going to turn round and say x pumper is not cost effective so we will not fund the pump or consumables.
> Cost cutting is the name of the game



Well said! i agree with that sentiment , that is what i worry about. all about money like so many other things


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## Twitchy (May 31, 2011)

Hi,

Like Bex I seem to have a temperamental tum  which will normally only stand for 2 days on each cannua - I have tried pushing this out to 3 but it can mean going haywire over the 2nd night etc & the DSN & doc advised against it. If I go for a swim (advised exercise as low impact etc etc), I can almost guarantee if I don't do a set change straight after I'll be in the high teens before a couple of hours pass...as the swim sessions I go to are with the kids & on set days, they don't always happen to fall on the 2nd day when I'd be due a set change anyway (if you get me) Given that after decades on 2 jabs a day & a couple of pregnancies I've already cost the nhs a fair whack in retinopathy treatment, I suspect changing cannulas regularly would be better than more complications! 

As for reusing the cartridge, I don't think you can with the combo? - yes you can retain the plunger but the needle part that clips on to the nozzle of the cartridge has a fitting that seems to deform as you remove it. Interesting thought though, possibly designed that way? 

Re the quantities of cartridges, that's a good point - I was originally given a list of set things to ask for each time which didn't specify how many are in a box, so I will certainly ask next time I call, anything to keep costs down without messing up control! 

I do try to keep pump & line secreted away (2 hyper kids, stairgates, annoying door handles & playful cat in mind, eek!) but still from time to time...ouch! Surprisingly easy to do when tired & distracted lol!

Bex, when my surgery were getting snotty about the amount of test strips I was using (just in line with DAFNE / pump protocol, nothing crazy) I wrote to my MP, specifically asking her to ask the question of the health sec't'y whether in-year cost cutting was responsible for the prescription audits / restrictions I'd been threatened with. She duly wrote to the health sec & head of PCT & strangely enough, denials all round, & no problems since... worth a go, I've still got the email somewhere so just pm me if you'd like a template! 

Anyway, hope this isn't stressing you out too much!

Twitchy xx


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## Ellie Jones (May 31, 2011)

twitchy

You can reuse them, as I have actually done it without any problems, hence why I always keep one back for emergencies..

I was caught short after finding having a couple of dodgy cartridges, so wasn't going to make the delievery date..  So I kept the collar and plunger and filled without any problems etc..

Must admit it's something I wouldn't like to do to often as my cartridge last me over a fortnight almost 3 weeks..  

so far with standing order from rouche they've been pretty good, and when I get a bit of a stock pile going one phone call to reduce it for that order sorted!


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## Twitchy (May 31, 2011)

Ellie Jones said:


> twitchy
> 
> You can reuse them, as I have actually done it without any problems, hence why I always keep one back for emergencies..
> 
> ...



Ooh, thanks for letting me know! I was a bit nervous about even trying, so it's good to know as a back up option, although like you say, I wouldn't want to do it often!

I was wondering - in this letter did it specify what you had to do if you went over your allowance? Even if you could afford it, are you allowed (as it were?!) to privately buy cannulas from Roche etc?  Wondering what the back up plan is if someone has a bad month for example...


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## Ellie Jones (May 31, 2011)

I suspect it's a bog standard letter the same for everybody...  And those who have a suitable reasons to why the need any aspect of their consumables will have them increased to level required, and if you have problems or running out then I assume that you phone the clinic to get clearance etc..

I suspect what has happened that when people have suffered a bad batch, instead of phoning and getting Rouche to replace they've just ordered more up to cover the lost consumables!


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## Twitchy (Jun 1, 2011)

If these are all patients on Roche Accu Chek combos, I wonder if this is related to the recent recall on the flex link plus?? I was promised to be sent packs to return any unopened boxes so the hospital could get refunded, but that never happened yet & it still doesn't account for all the dodgy cannulas that I wasn't able to use before?... hmmm.....


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## Pumper_Sue (Jun 1, 2011)

Twitchy said:


> If these are all patients on Roche Accu Chek combos, I wonder if this is related to the recent recall on the flex link plus?? I was promised to be sent packs to return any unopened boxes so the hospital could get refunded, but that never happened yet & it still doesn't account for all the dodgy cannulas that I wasn't able to use before?... hmmm.....



Twitchy,
just a suggestion for you. Can you contact your PCT and find out if they have been credited for the cannula's you sent back.
All faulty Cannula's keep in a clear plasic bag each time you get to 10 give Roche a ring and say I have now got 10 cannula's which are faulty please can I have some replacements free of charge.

I had some faulty Cannula's a little while back,so  rang my pump company who then replaced the box for me free of charge.
It's a bit like buying faulty goods in a shop, you take them back for a refund or replacement 

Do give Roche a ring as well and find out where your replacements are.


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## Twitchy (Jun 1, 2011)

This was a few months ago, when Roche did a recall of all flexlink plus cannulas...the problem was the cannulas not having enough seperation distance between the end of the angled part of the insertion needle & the start of the cannula (so often the cannulas would kink on/after insertion - I definitely had a few distinct dodgy batches...) ...unfortunately, the flexlink design being what it was, you could only spot the problem (which you wouldn't spot until you were told to a) look for it & b) what it was, doh!) once you had opened each individual pack, and 'cocked' the needle / cannula ready for insertion - one time after we'd all been told what to look for I got through 3 cannulas before finding a decent one!! When I queried past duff cannulas (uninserted, as described) Roche were adamant that they would not under any circumstances want these to be returned, and that they would not credit them back to the hospital (if that makes sense) as they could/would only  handle unopened, still sterile packed cannulas.  Not fantastic customer service really...

The packets they promised me were for any unopened boxes (10 per box) of cannulas, unfortunately I have limited storage space, and usually decant my med stuff into a set of draws so it's out of the kiddies reach... Since the recall everyone is on the flex link (as opposed to the flexlink plus) so stocks are running low, they won't send out big orders (hmm, wonder who's paying the postage on all those small deliveries?! ). All in all, from a customer (tax paying perspective) not brilliant....


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## Pumper_Sue (Jun 1, 2011)

Twitchy said:


> This was a few months ago, when Roche did a recall of all flexlink plus cannulas...the problem was the cannulas not having enough seperation distance between the end of the angled part of the insertion needle & the start of the cannula (so often the cannulas would kink on/after insertion - I definitely had a few distinct dodgy batches...) ...unfortunately, the flexlink design being what it was, you could only spot the problem (which you wouldn't spot until you were told to a) look for it & b) what it was, doh!) once you had opened each individual pack, and 'cocked' the needle / cannula ready for insertion - one time after we'd all been told what to look for I got through 3 cannulas before finding a decent one!! When I queried past duff cannulas (uninserted, as described) Roche were adamant that they would not under any circumstances want these to be returned, and that they would not credit them back to the hospital (if that makes sense) as they could/would only  handle unopened, still sterile packed cannulas.  Not fantastic customer service really...
> 
> The packets they promised me were for any unopened boxes (10 per box) of cannulas, unfortunately I have limited storage space, and usually decant my med stuff into a set of draws so it's out of the kiddies reach... Since the recall everyone is on the flex link (as opposed to the flexlink plus) so stocks are running low, they won't send out big orders (hmm, wonder who's paying the postage on all those small deliveries?! ). All in all, from a customer (tax paying perspective) not brilliant....



Hi Twitchy,
you need to take the issue up with your team and PCT. Roche are supplying faulty medical goods. They have to replace them.
If they want to be anal about it then inform trading standards.
Another option is to get your cannula's from else where. Yours is a luer lock on the cartridge so loads of diff types to be had.

Makes me wonder how much the PCT's lose from Roche and how much Roche gain.
If they are doing this to every customer then there's potential for massive over spend from the PCT's and a pontential loss of funding for new pumpers.
Which is a terible shame as people are crying out for pumps 

Can you make up a list of suggestions for your pump team to help minimise the costs re faulty cannula's?
It might be feasable for each patient to take in all faulty cannula's as proof of fault and then the PCT's reduce the bill from Roche in accordance with returns.


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## Twitchy (Jun 1, 2011)

Pumper_Sue said:


> Can you make up a list of suggestions for your pump team to help minimise the costs re faulty cannula's?
> It might be feasable for each patient to take in all faulty cannula's as proof of fault and then the PCT's reduce the bill from Roche in accordance with returns.



Good point & good idea! I'll have a word...


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## Phil65 (Jun 2, 2011)

bex123 said:


> I dont doubt that it costs a lot to fund a pump hence why so many people who need one are on a 'forever ' waiting list
> 
> i most certainly cannot 'Re-use the cartridges...to do so would A) be unhygenic and B) would require keeping the removable plunger and cap in un sterile curcumstances. With the ammount of insulin i use i use one in 4 days.and like i said there are only 5 cartriges to a box with the accu check combo pump
> 
> ...



Good post Bex  I am in total agreement


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