# I didn't really see this coming...



## SacredHeart (Aug 5, 2010)

...but after a chat with the nurse who deals with pumping at the hospital, I've been offered a pump, to start in October/November, if I want to go ahead with it. 

Looks like it's make my mind up time!


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## novorapidboi26 (Aug 5, 2010)

What would be your number one reason for accepting the offer?


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## SacredHeart (Aug 5, 2010)

A finer level of control. Because I'm so insulin sensitive, I have to work REALLY hard to make MDI work for me. Being able to use smaller amounts of insulin would make it less of a 'cracking a nut with a sledgehammer' situation.


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## Steff (Aug 5, 2010)

Hi Becki cant really give any advice but knowing you from here and from meeting you I know you will make the right choice and will tackle any probelms head on, good luck hun xx

p.s All the pump users on here im sure will assist and help you come to some sort of desicion either way.


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## SacredHeart (Aug 5, 2010)

Thanks Steff  I'm already leaning towards saying yes, but something's holding me back. Now if I can only figure out what!


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## randomange (Aug 5, 2010)

Ooh exciting! And very on the ball for your hospital! 

I can understand why people have reservations about going onto a pump, because it's such a huge change in how in treatment.  I think it would be particularly useful for you since you're on such small amounts of insulin, and you can always go back to MDI if you find pumping isn't for you!

However, I'm always in favour of making lists of pros and cons, and coming to the your own decision.  Do  you have a time limit to get back to them with and answer?


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## SacredHeart (Aug 5, 2010)

I think it's a 'get back to us asap' kind of situation. I also think it might be an animas pump, if I go for it. How do you get on with yours?


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## randomange (Aug 5, 2010)

I love my animas pump! I had a choice of all three, and I went for the animas because it looked the nicest to me, it's a little bit smaller, and it has pretty much all the bells and whistles that the other pumps have.  I also have nothing but good things to say about animas customer service, they have been absolutely excellent.

Of course, I may be a little bit biased... 

Have you had a read through some of the other pump threads where people have been weighing up the pros and cons? It might help sway you one way or the other.


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## am64 (Aug 5, 2010)

hey becky ...good news you've been accepted ...now for that decision ...i do remember a while back you discussing this and you didnt feel it was right for you but since you've been having difficulty with the control (hypos!) ...with your busy life it maybe a total relief to have a pump...plus you never know until you try i suppose... good luck x


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## novorapidboi26 (Aug 5, 2010)

As you seem to be so insulin sensitive I would say go for it..........

If its not beneficial you can always go back to injections......

I am the opposite from you, type 1 and resistant most of the time...

You will make the right choice.....


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## SacredHeart (Aug 5, 2010)

Thanks for the thoughts, guys 

I was impressed and surprised at how quickly they got back to me. I only saw the nurse on Tuesday, and got an email at 9:30 this morning saying yes. Probably helps that York's PCT is very well financially managed, and is safely in the black


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## Freddie99 (Aug 5, 2010)

For me the only perks to an Animas pump is the colour screen. Take away that and it's much the same as my Medtronic. You get a 200 unit reservoir which only tops the Medtronic by twenty units. It's also a bit bulkier than what I have. I haven't had alook at the menu layout on an Animas but on my Medtronic the menus are laid out in a logical and clearly well thought through manner. The controls on the Medtronic are very easy to use, I could get the basics without even reading the manual. The Animas runs on AA batteries and the Medtronic on AAA ones and I understand that the battery life is about the same (I get about a month to six weeks out of mine). The software that you get with the Medtronic is rather helpful. However I don't use it but it's nice to have there. I find that I can operate the Medtronic "blind" through clothing either by remote control or through using the buttons which are large and very tactile. I know that the consumeables are interchangeable with an Roche pump but not with anything else. The one upside is that the inserting devices for an Animas is that they are disposable. They seem to be well made. Medtronic's stuff is clearly well made and I've never had problems, there will be issues when you start because it takes a while to get the techniques and to find the ways that work for you. The basal increments are much the same on both the Medtronic and Animas. You can set the rate at which a bolus is delivered on an Animas. You can get it rather fast or slow. On the Medtronic you can only have it slowly. If you choose fast you can really feel it. However, should you choose to get the boluses slowly you can't even feel they are going in. 

I think that's all I can think of for the moment but feel free to ask anything of me. 

I hasten to add that this is all from conversations with my DSN and having a good look at the Animas 2020 pumps that are kept in my Diabetes Centre. I find it's a good pump but I'd rather have my Medtronic any day of the week. 

Tom


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## SilentAssassin1642 (Aug 5, 2010)

can i just ask how you meet the NICE guidelines? I actually thought you had to meet the HbA1C one or the hypo one?


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## shiv (Aug 5, 2010)

Nope...they're just guidelines. Tom doesn't strictly meet them either, but the bottom line is if your consultant says yes, the PCT has to pay.

I'm seriously hoping my consultant says yes after my 10 week trial.


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## SilentAssassin1642 (Aug 5, 2010)

shiv said:


> Nope...they're just guidelines. Tom doesn't strictly meet them either, but if your consultant says yes, the PCT has to pay.
> 
> I'm seriously hoping my consultant says yes after my 10 week trial.



hmm, not what I've heard. They are guidelines yes, but in the end I thought if the NICE people are like "hmmmm" then it's a no go. Toms HbA1C was pretty high if I remember and I know i met the hypo ones? 
 It confuses me greatly 

and they totally will my lovely, I actually can't see why they wouldn't


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## shiv (Aug 5, 2010)

Nope, it's all down to your consultant. NICE guidelines can be used however the consultant wants them to - either as guidelines or, as in my clinic, as hard and fast rules. Obv I would imagine if the consultant kept saying no you and you def met NICE guidelines you could either appeal or see another consultant. But basically you can't get a pump until a consultant gives the nod.

Tom didn't quite meet the hba1c one (how do I know this stuff?!) but he has a damn good consultant, so that's what it came down to.


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## bev (Aug 5, 2010)

shiv said:


> Nope, it's all down to your consultant. NICE guidelines can be used however the consultant wants them to - either as guidelines or, as in my clinic, as hard and fast rules. Obv I would imagine if the consultant kept saying no you and you def met NICE guidelines you could either appeal or see another consultant. But basically you can't get a pump until a consultant gives the nod.
> 
> Tom didn't quite meet the hba1c one (how do I know this stuff?!) but he has a damn good consultant, so that's what it came down to.



Hi Shiv,
It could be different for children, but when we wanted one for Alex I investigated the NICE guidelines and he met all the criteria - so the consultant *had* to say yes to one - he didnt have an option. I think the guidelines on pumps is mandatory and therefore it doesnt matter whether the consultant doesnt agree - if you fit the criteria then they cant refuse you.

Also, I thought that part of the criteria was an improvement in 'quality of life' - so even if you dont meet the hba1c one - surely you meet the better 'quality of life' criteria if you feel that this would give you better control and more freedom etc? Perhaps things are different for adults though.Bev


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## shiv (Aug 5, 2010)

Very different for adults Bev unfortunately. Obv it varies hospital to hospital, but with my clinic you have to meet the guidelines exactly and the consultant has to say yes before you can even think about getting one. For example, my consultant said he agrees that I may need one but wants to try a few things first (eg tweaking basals and stuff). It's the DSN that has agreed to get me a trial pump - then hopefully they will be happy I have improved with it, and will go for funding for my own. The fact that I meet the NICE guidelines (hypoing nightly - with the drop in basal I'm now hyper most mornings but that's for another thread haha!) doesn't mean I automatically get one - as I say, the consultant wants me to try other things first.

Just had a look at the NICE guidelines, it states that pumps are 'recommended' for people with the hba1c & hypos etc etc...recommended, not mandatory. Unfortunately.


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## SacredHeart (Aug 5, 2010)

As for the NICE guidelines, I don't really meet either.

My team seem to be very pro-pump though, and the lovely DSN (not my usual one) who I spoke to about this was keen. She said that she thought there was no reason to 'punish' me, when I'm 'clearly motivated, working VERY hard, and educated enough on carb counting to make the pump work'. and that why should I 'be denied the gold standard, when you're clearly pro-active about your health'? 

I told her I wasn't convinced about it, and that I was only really there to talk about pumps in general. We talked about the fact that I'm SO insulin sensitive that I have to be thinking about things all the time, or it slips for days, and I'm then chasing my tail to get things back in line, and how I'm already showing signs of losing first hypo warnings. 

She said she'd take my case to the review board. I thought they'd say no. Apparently my consultant thinks it's a good thing for me. 

So like I say, it's thinking time now!


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## shiv (Aug 5, 2010)

You're very lucky Becky to be offered one without meeting NICE guidelines. My team also said the same about me - motivated and proactive with my care - but want me to explore all options on MDI before going for a pump. I'm hoping with my trial coming up they will see the improvement and will give me the go ahead to get my own.


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## shiv (Aug 5, 2010)

SacredHeart said:


> My team seem to be very pro-pump though, and the lovely DSN (not my usual one) who I spoke to about this was keen. She said that she thought there was no reason to 'punish' me, when I'm 'clearly motivated, working VERY hard, and educated enough on carb counting to make the pump work'. and that why should I 'be denied the gold standard, when you're clearly pro-active about your health'?



This is why the postcode lottery frustrates me. My DSN is pro pump and thinks that I should have one on the basis that I am so overworked by MDI and that psychologically she thinks I would benefit. But because my clinic is so strict on meeting the guidelines and testing out everything under the sun before pumping, I can't get funding for my own yet.

Sorry, slightly hypo as I type. Hope this is all making sense.


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## SacredHeart (Aug 5, 2010)

I know how badly you want one, Shiv. I'm totally hoping it works out the right way for you


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## SacredHeart (Aug 5, 2010)

shiv said:


> This is why the postcode lottery frustrates me. My DSN is pro pump and thinks that I should have one on the basis that I am so overworked by MDI and that psychologically she thinks I would benefit. But because my clinic is so strict on meeting the guidelines and testing out everything under the sun before pumping, I can't get funding for my own yet.
> 
> Sorry, slightly hypo as I type. Hope this is all making sense.



It could also be that your PCT is in the red? I don't know whether it is or not, but I know York's PCT is very much in the black, so has more funds available


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## rachelha (Aug 5, 2010)

shiv said:


> Nope...they're just guidelines. Tom doesn't strictly meet them either, but the bottom line is if your consultant says yes, the PCT has to pay.
> 
> I'm seriously hoping my consultant says yes after my 10 week trial.



 My consultant said yes over a year and a half a go, unfortunately it is not the case that the PCT have to pay or not straight away.

Becky - I would be inclined to give it a go, I am probably biased with my own pump struggle, but you do not have to stick with it if it is not for you, but with such high insulin sensitivity it may be just what your need.


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## shiv (Aug 5, 2010)

rachelha said:


> My consultant said yes over a year and a half a go, unfortunately it is not the case that the PCT have to pay or not straight away.



Agree it might not be straight away - but if the consultant says yes, the PCT do have to cough up the cash at some point.


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## shiv (Aug 5, 2010)

SacredHeart said:


> It could also be that your PCT is in the red? I don't know whether it is or not, but I know York's PCT is very much in the black, so has more funds available



Oh yes, mine is about to undergo serious funding cuts. Maybe I should just move to York! That's what I mean about a postcode lottery - your postcode has money, mine doesn't. So frustrating.


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## SilentAssassin1642 (Aug 5, 2010)

in which case Becky you are VERY lucky indeed. Alot of us have had to fight tooth and nail despite meeting the NICE guidelines. I was refused one for so long despite having frequent hypo's - daily too. And whilst I now have my pump, I have to admit I find it incredibly frustrating when myself and so many others have had to fight tooth and nail for a pump when others seem to have no trouble at all without even meeting any of the guidelines.


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## SilentAssassin1642 (Aug 5, 2010)

shiv said:


> Oh yes, mine is about to undergo serious funding cuts. Maybe I should just move to York! That's what I mean about a postcode lottery - your postcode has money, mine doesn't. So frustrating.



get your backside down to B-Dec kiddo  Best pump clinic in the country with some seriously epic amounts of funding!


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## bev (Aug 5, 2010)

shiv said:


> Very different for adults Bev unfortunately. Obv it varies hospital to hospital, but with my clinic you have to meet the guidelines exactly and the consultant has to say yes before you can even think about getting one. For example, my consultant said he agrees that I may need one but wants to try a few things first (eg tweaking basals and stuff). It's the DSN that has agreed to get me a trial pump - then hopefully they will be happy I have improved with it, and will go for funding for my own. The fact that I meet the NICE guidelines (hypoing nightly - with the drop in basal I'm now hyper most mornings but that's for another thread haha!) doesn't mean I automatically get one - as I say, the consultant wants me to try other things first.
> 
> Just had a look at the NICE guidelines, it states that pumps are 'recommended' for people with the hba1c & hypos etc etc...recommended, not mandatory. Unfortunately.



Shiv,
Under the 'patients charter of 2009' you are allowed to ask for a referral to another hospital under 'patient choice' -and you dont have to give them a reason and you wont be penalised for asking for it - it is your right.

If you find out which hospitals are pro-pump and have enough funding - you can ask your GP for a referral - and he cant refuse you. Once your in the new hospital - they will sort the pump out and you just have the annual bloods done at your local hospital - shared care. Lots and lots of the children on the other forum do this - why dont you ask for a referral?

When I say 'mandatory' - I dont mean that pumps are mandatory - I mean that they come under the NICE criteria. Hospitals can ignore NICE guidelines because they are just that - guidelines. But they cant ignore anything that is 'mandatory' - this is why they cant refuse pumps due to funding reasons. They are also not allowed to tell you there is a waiting list for a pump once your consultant has put forward for funding.

I am not explaining myself very well here am I? If you ask JD or JJ on the list - I am sure they will explain things a lot better than I have.Bev


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## bev (Aug 5, 2010)

SilentAssassin1642 said:


> in which case Becky you are VERY lucky indeed. Alot of us have had to fight tooth and nail despite meeting the NICE guidelines. I was refused one for so long despite having frequent hypo's - daily too. And whilst I now have my pump, I have to admit I find it incredibly frustrating when myself and so many others have had to fight tooth and nail for a pump when others seem to have no trouble at all without even meeting any of the guidelines.



Sam,
Its people like you who pave the way for others - you have fought very hard for your pump (as did I) - and this means that pumps are now becoming the 'norm' and not quite so unusual. So you should be giving yourself a big pat on the back for helping others to get a choice - you have helped to make it all happen. I know you must feel that its not fair because others perhaps dont have to fight - but feel pleased with yourself that you have made a difference and that in future all people will be offered a pump and you can take pride in the fact that you helped to make it happen.Bev


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## SilentAssassin1642 (Aug 5, 2010)

bev said:


> Sam,
> Its people like you who pave the way for others - you have fought very hard for your pump (as did I) - and this means that pumps are now becoming the 'norm' and not quite so unusual. So you should be giving yourself a big pat on the back for helping others to get a choice - you have helped to make it all happen. I know you must feel that its not fair because others perhaps dont have to fight - but feel pleased with yourself that you have made a difference and that in future all people will be offered a pump and you can take pride in the fact that you helped to make it happen.Bev



awww thanks bev, you just made me smile huuugely


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## tracey w (Aug 5, 2010)

Really pleased you have been offered a pump, its totally up to you of course. But I can definatey say having the pump is life changing for me. I love mine.

Yes i fought hard to get mine, but truth be told i didnt fit the criterea either, but had fantastic consultant who said i was totally motivated and probably a bit like yor team, feel you "deserve" it as you try so hard with your health. I only wish everyone who wanted one got offered them.

Also, can i just vouch for the accu- check combo. I know Tom loves his medtronic, I think we all love what we have personally chosen. I dont know too much about animas, but im sure it will be great too. Good luck to you.


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## SilentAssassin1642 (Aug 5, 2010)

tracey w said:


> Also, can i just vouch for the accu- check combo. I know Tom loves his medtronic, I think we all love what we have personally chosen. I dont know too much about animas, but im sure it will be great too. Good luck to you.



combo all the way  I was a bit gutted when I was told I couldn't have a medtronic but to be honest I actually love Florence now, she's like my new best friend


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## sofaraway (Aug 6, 2010)

I am glad to hear you are getting this opportunity and that your team is able to look further than the guidelines. I really want a pump, and am going to ask to see the pump consultant here.


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## Patricia (Aug 7, 2010)

Yes like I think all on this thread I'd be inclined to say yes too - after all, you can always return to MDI , but getting a pump once you've said no once may prove very difficult....

We got a pump within 7 months of my son's diagnosis, which I realise is nearly miraculous sounding sometimes. We pursued shared care, got the agreement if our sympathetic GP, and had a local consultant who told us outright that NICE guidelines could always be fulfilled if the consultant saw fit. We only had one HbA1c over 8, so that could not be used with clarity. Nor could problems with hypos as there had not been enough time for thus to occur....

I firmly believe that what swung both clinics and both consultants was my son's and our clear drive to get good control. When asked why he wanted a pump, my then 12 year old said 'to get good numbers'. I really think that good medics understand motivation and respect those who want to help themselves, and will go to a lot of trouble to give the best care in their power. 

We were lucky that our PCT were just warming up to pumps too, and keen. 

So I say take it if you can and can bear to. It's a big step, but in each step lies the future!


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## Patricia (Aug 7, 2010)

Sorry, typing on a silly tiny screen.... Also wanted to say what bev did too: all of this is about being an example and motivated. As long as you don't pull up the 'ladder' behind you, and whatever you choose keep supporting others and being active however you can, you'll make a difference. 

That's what I think anyway!


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## Steff (Aug 15, 2010)

Hi Becky was just wondering if you had came to any decsions about going on the pump?or do you still have more time to mull it over .x


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## Catwoman76 (Aug 15, 2010)

SacredHeart said:


> Thanks Steff  I'm already leaning towards saying yes, but something's holding me back. Now if I can only figure out what!



It's probably the unknown ScaredHeart, it makes us all a bit scared. Hope you make the best choice for you. good luck Sheena


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