# To pump, or not to pump...



## imtrying (Feb 10, 2012)

....that is the question!

For those that have read my other post, at my latest Diabetes review, one of the DSN has asked me to consider if I'd go on a pump. This is the first time it's ever been suggested to me, and the first time anyone's actually explained it all to me and how it works. 

Now, I know there's loads of people shouting and screaming for a pump, so I really don't want to seem ungrateful (as I'm not) but I am still unsure how I feel about it. I do know that I'd get much better control and improved injection sites, as well as helping me when I'm at the gym...but I really don't know how I feel about pumping. 

Is this normal??? What sort of thoughts and emotions did you all go through before deciding or making the change? And how do you feel about those worries now? 

I will probably go for it as I think for my own health I'd be stupid not to. I've asked my DSN to check if I'd get funding first before I allow myself to become too attached to the idea, so I should know in a week.


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## shiv (Feb 10, 2012)

If your consultant agrees you'd benefit from one, you'll get funding 

I had been fighting to get hold of a pump for several months, so I'm not quite in the same position as you. However, I can appreciate that a massive change in regime is a pretty daunting thought!

What I would say is, remember that if you don't like it, you can go back to injections. Choosing to pump doesn't have to be a permanent decision - you can even have 'holidays' from the pump if you feel you need a break from it.


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## Pumper_Sue (Feb 10, 2012)

Hi Katie,
as I staed before PCT can not refuse you pumping if a consultant requests it. So stop worrying in that dept. 
Everyone has worries before they start to pump (normal reaction)
Ask if you can have a pump to play with before you commit yourself and have some saline in it.
There are very few who give a pump up after starting. Some do have them taken away due to not having the understanding on how to make the best use of them or just abusing them. 
If your injection sites are going then your control will as well, so take the chance when offered would be my advice. (This is obviously up to you though)
Buy yourself the book pumping insulin and learn what you can, the book is worth it's weight in gold.

No matter what your worries are just ask either your DSN or on here. Hopefully One of us can help out.
Bottom line though is, the pump is only as good as the user. So if you put the work in (which I'm sure you will) then you will reap the rewards


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## novorapidboi26 (Feb 10, 2012)

I would go for it..................but for me personally, if the opportunity came along, it probably wouldn't happen again.............

I imagine the changes would be significant, but like all things diabetes, you will get used to them very quickly........

I hope your consultant/team give you the green light.....


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## ScottyK (Feb 10, 2012)

Hello 

I think it's perfectly normal to feel a it confused by it all.  I got a pump 3 years ago and it really is amazing.  But I was apprehensive about it at first - I was 27, female, into fashion, total gym-addict, single and totally unsure about being connected to a box 24 hours a day.  One minute I thought, yes, I'll go for it as it'll be better for my health.  The next minute I thought, hell no, I don't want to be attached to this medical device - what happens if I, ahem, 'hook up' with someone etc 

Anyway, in the end I just thought to hell with it - I'll stop over-thinking and just go for it, see if it works for me and if not then I can always go back to MDI.  Best decision ever. 

To be honest I was pretty darn emotional when I got it and probably for the first few weeks too.  But after those initial couple of weeks I was totally fine and a little bit in love with my pump.  It makes keeping tighter control so much easier.  Got a slightly raised BM?  Just take a tiny dose of insulin to correct it. Got a session in the gym - suspend/lower your basal for a few hours.  The flexibility it gives you really is wonderful 

So, to cut a long story short - yep, it wasn't an easy decision to get a pump, I felt very emotional about the whole thing, but now I cant imagine life without it.  (and of course my partner wasn't/isn't bothered by it at all)

Any questions, just shout 

Katie


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## imtrying (Feb 10, 2012)

ScottyK said:


> Hello
> 
> I think it's perfectly normal to feel a it confused by it all.  I got a pump 3 years ago and it really is amazing.  But I was apprehensive about it at first - I was 27, female, into fashion, total gym-addict, single and totally unsure about being connected to a box 24 hours a day.  One minute I thought, yes, I'll go for it as it'll be better for my health.  The next minute I thought, hell no, I don't want to be attached to this medical device - what happens if I, ahem, 'hook up' with someone etc
> 
> ...



Thanks very much for your honest reply Katie

...as an aside, I have to say how freakily the same we seem to be....I was 10 when diagnosed (in 92) and 3 years ago when you were 27, I was too (after my birthday) and my name's Katie haha...have I just made myself seem weird??  

it's great to hear someone who seems to have gone through the same thoughts I am. I'm married and tbh, I'm not sure how keen my hubby is on the idea of me being 'hooked' up 24/7. He's more than happy for me to get it done if it's what I decide, but I can't help feel he's a little bit against it...though that just may be me putting my own reservations on him. And as stupid as it sounds, I'm petrified it may change things between us  But I know it may not, and as people have said, I can always switch back 

I'll wait to hear back from the DSN...but i think i will go for it. Spoke to both my parents last night and they are both supportive and think I should go for it.


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## ScottyK (Feb 10, 2012)

Oh how very bizarre - we're diabetes twins  (too far?!)

As for your hubby - he'll get used to it.  When I got together with my partner he found it a little odd that I was connected to this thing but after a while he kinda stopped noticing it.  The only time he complains is when it gets tangled round him in bed sometimes!  But remember, you can just discretely disconnect yourself before, ahem, exercise   Honestly, I would very, very much doubt it will change your relationship.  He obviously loves you and will come to love your pump too. 

Katie


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## novorapidboi26 (Feb 10, 2012)

imtrying said:


> And as stupid as it sounds, I'm petrified it may change things between us



If it does, your with the wrong man............


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## Pumper_Sue (Feb 10, 2012)

Hi Katie,
with a pump you will feel a lot healthier, the first few weeks are a bit of a roller coaster but you will survive. It's a bit like learning diabetes all over again.

What it all boils down to for you and Hubby is fear, FEAR of the unknown.
I went on a pump after well over 40 years on injections and within 24 hours I didn't even notice the pump at all. Obviously this doesn't include the hard work involved in sorting basals to start with.
But the actual wearing of the pump was a complete non issue.


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## trophywench (Feb 10, 2012)

Hear Hear, NRB !

The only thing I'd say against my old man, is when I'm not having good control, he will keep harping on with 'Strikes me you had better control on injections' - well, he's said it twice actually since I got the thing, nearly 12 months ago.

But I didn't have better control, my A1c was often in the 8's.  

Of course I had less hypos ...... blinding obvious if your BG is too high most of the time ..... but of course, he never 'saw' that on my surface, did he?

I'm just about only learning now (ie the hard way) that I MUST react quicker to adjusting basal rates because I started having 'repeated' hypos before Xmas and just left it instead of 'testing' them properly - and you can't!!  I mean it's not like I didn't know this because I did, they drum it into you with a pump.  Just sheer laziness on my part so it serves me right!

But tell you what, Himself's occasional snide remark spurs me into action - so maybe that's why he does it?  probably knows me too well .....


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## imtrying (Feb 10, 2012)

shiv said:


> If your consultant agrees you'd benefit from one, you'll get funding
> 
> I had been fighting to get hold of a pump for several months, so I'm not quite in the same position as you. However, I can appreciate that a massive change in regime is a pretty daunting thought!
> 
> What I would say is, remember that if you don't like it, you can go back to injections. Choosing to pump doesn't have to be a permanent decision - you can even have 'holidays' from the pump if you feel you need a break from it.



thanks very much Shiv. And a very good way to think about it! That's made me feel loads better.



Pumper_Sue said:


> Hi Katie,
> as I staed before PCT can not refuse you pumping if a consultant requests it. So stop worrying in that dept.
> Everyone has worries before they start to pump (normal reaction)
> Ask if you can have a pump to play with before you commit yourself and have some saline in it.
> ...



haha Sue, I know, I promise you I'm not ignoring you or dismissing what you're saying!  I'm a worrier and until I hear those words, I'm going to be worrying! lol but thank you for letting me know, it does help. 

The book sounds like a good idea...will have to have a look for that over the next few weeks 

Thank you both for your support.


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## everydayupsanddowns (Feb 10, 2012)

Katie

I took about 2 years to come from a position of 'pumping is not for me' to getting one (wrote about it on the blog).

In the end I realised that whatever I did with MDI the promise of improvement, flexibility, ease and basal/dose tweaking of a pump were always going to be there untried unless I gave it a go.

I think *everyone* worries about what it will be like - and some will find that it's not for them... but look around at the number of peeps on pumps who would maim anyone trying to take it off them it makes a pretty good case for at least giving it a go for a year and seeing how you feel.

Good luck with your decision!


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## imtrying (Feb 10, 2012)

ScottyK said:


> Oh how very bizarre - we're diabetes twins  (too far?!)
> 
> As for your hubby - he'll get used to it.  When I got together with my partner he found it a little odd that I was connected to this thing but after a while he kinda stopped noticing it.  The only time he complains is when it gets tangled round him in bed sometimes!  But remember, you can just discretely disconnect yourself before, ahem, exercise   Honestly, I would very, very much doubt it will change your relationship.  He obviously loves you and will come to love your pump too.
> 
> Katie



lol nope. always wanted a twin!! 

haha yep, that was one of his questions..."exercise" lol but I do understand the questions - I think I'd be a little bit questioning if he was going to get something sticking out of him!!  I suppose it can be a trial time for both of us. I keep insisting it needs to be a joint decision but he just tells me it's nothing to do with him and should be down to me (in a nice way). I suppose part of me is a little worried he's not realising the impact...or that maybe I'm over-imagining the impact!!


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## everydayupsanddowns (Feb 10, 2012)

Could you ask your DSN to show you an infusion set? Might put your mind at rest?


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## Pumper_Sue (Feb 10, 2012)

imtrying said:


> lol nope. always wanted a twin!!
> 
> haha yep, that was one of his questions..."exercise" lol but I do understand the questions - I think I'd be a little bit questioning if he was going to get something sticking out of him!!  I suppose it can be a trial time for both of us. I keep insisting it needs to be a joint decision but he just tells me it's nothing to do with him and should be down to me (in a nice way). I suppose part of me is a little worried he's not realising the impact...or that maybe I'm over-imagining the impact!!



Hi Katie,
the sticking out bit almost like a button attached to you so no impact at all 

Pumping insulin can be found on Amazon


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## Monica (Feb 10, 2012)

I can understand you're a bit worried.
Carol was adamant she did NOT want a pump and refused the offer by the consultant twice, because she didn't know how it worked. Then she met someone with one, who showed her what it was all about. She wouldn't want to give it back for anything!!!

I can also understand your hubby's worry about the pump getting in the way of"the bedroom fun", but he really doesn't have to, as you simply detach the pump. All that's left is a small "button" (as Sue already said)
Asking the nurse to show you the pump is a good idea. Or maybe a rep could come round and show you..... We actually went to the hospital for a "show & tell" session with the DSNs and a rep.

How about you look on YouTube for some pumping videos. There you can see the bit sticking out of your tummy.


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## trophywench (Feb 10, 2012)

... and of course if you go to a forum 'meet' - any pumpers will be most happy to show you theirs!

Monica and I did a double act in Birmingham last year, didn't we?  LOL

(I'd have put me best knickers on had I known!)


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## sofaraway (Feb 10, 2012)

I would go for it. The fact your team have approached you about the pump means they feel you are a good candidate. By that your diabetes meets the criteria for a pump and they feel you would put the work in. 

I've been pumping since November and it has made a significant difference to my diabetes. I always ran a decent HbA1c by the number but had very few readings within target- less than 10% pre pump. 

I had a wobble just before I started thinking that it might not work and what I would do if it didn't make any difference. But I was lucky to get very early good results.


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## Ellie Jones (Feb 10, 2012)

Having a hesitation about starting pumping is pretty normal as you'll trying to guess the unknown in many respects...  

Personally I say, if they are offering go for it, after all if you really don't like it you can hand it back...  But there isn't many that do though..

My husband is also a fella T1 even though he was very supportive during my battle and kept me going on some dark days when I despaired whether I would ever get one, he isn't bothered about pumps and doesn't really want one...

Me wearing a pump has never bothered him, he's taken it in his stride, and makes comments like 'can I play space invadars on your pump' handing his hands as though he got my pump in them with twiddling thumbs and a glint in his eyes

He's got used to shuffling the pump around in bed, as I allow it to roam free, it did take him a while to click on, that most times he found it on his side of the bed I had put it there...  As I found when he's snoring a sharp dig in the ribs with my elbow, will make him roll onto his side and stop snoring, then if I put my pump just behind him, every time he tries to roll onto his back he hits the pump and automatically turns back on his side

But if you want some idea what it's like to wear a pump, you could always try this...  Get a piece of string or ribbon about 60cm long (this is the most common length of tubing used) stick on end onto your stomach, and the other end onto your mobile phone this will give you a jest of what wearing a pump feels like...


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## Monica (Feb 10, 2012)

trophywench said:


> ... and of course if you go to a forum 'meet' - any pumpers will be most happy to show you theirs!
> 
> Monica and I did a double act in Birmingham last year, didn't we?  LOL
> 
> (I'd have put me best knickers on had I known!)



Yes, we did, it was fun, shame I didn't have the pump (Carol went off shopping) to show though, only the cannula and the reservoir


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## Monica (Feb 10, 2012)

Ellie Jones said:


> But if you want some idea what it's like to wear a pump, you could always try this...  Get a piece of string or ribbon about 60cm long (this is the most common length of tubing used) stick on end onto your stomach, and the other end onto your mobile phone this will give you a jest of what wearing a pump feels like...



LOL, good idea!!
During the "show & tell" anyone who wanted could have a cannula inserted. I kept mine in until the evening. Carol kept hers in for the 3 days allowed. I actually told her to attach her mobile too, But she wasn't keen.


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## imtrying (Feb 13, 2012)

sofaraway said:


> I would go for it. The fact your team have approached you about the pump means they feel you are a good candidate. By that your diabetes meets the criteria for a pump and they feel you would put the work in.
> 
> I've been pumping since November and it has made a significant difference to my diabetes. I always ran a decent HbA1c by the number but had very few readings within target- less than 10% pre pump.
> 
> I had a wobble just before I started thinking that it might not work and what I would do if it didn't make any difference. But I was lucky to get very early good results.



thanks Nikki. I've asked them to contact the relevant people (not sure who that is) and the pump DSN is on leave this week, but is hoping she'll have some more news for me when she's back on Monday. 

just have to wait and see!


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## imtrying (Feb 13, 2012)

Ellie Jones said:


> Having a hesitation about starting pumping is pretty normal as you'll trying to guess the unknown in many respects...
> 
> Personally I say, if they are offering go for it, after all if you really don't like it you can hand it back...  But there isn't many that do though..
> 
> ...



hahahahahahahahahahahaha Ellie, this made me absolutely laugh out loud lol I love the pump in bed to stop your hubby snoring!! This would definitely be something I would need to use mine for too pmsl

I suppose what I needed from everyone was just a bit of reassurance about it all. I now feel more equipped to make an informed decision, and so far I haven't found any reasons why not to do it. 

Will see what they have to say next week!


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## HOBIE (Feb 13, 2012)

I would "NOT GIVE MY PUMP BACK"   45yrs T1  over 2 on pump  !!!


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## trophywench (Feb 14, 2012)

Don't rely on that as a stop snoring cure - doesn't work in our house - for either of us!


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## imtrying (Feb 14, 2012)

HOBIE said:


> I would "NOT GIVE MY PUMP BACK"   45yrs T1  over 2 on pump  !!!



Thanks HOBIE, it's great seeing how passionate people are about their pumps, and helps me feel more sure 



trophywench said:


> Don't rely on that as a stop snoring cure - doesn't work in our house - for either of us!



haha I'll put it as a potential pro but may have to get more inventive if it doesn't work lol


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## imtrying (Feb 14, 2012)

I spoke to one my friends I made on my BERTIE course last night, and guess what???? She's thinking about going on a pump too!!!!!! 

This is scary how we have ended up in the same position without having spoken to each other! But it is absolutely fantastic that I have someone I know who is going to be going through the same things as me, at probably roughly the same time 

This has made me feel much, much happier, along with all your support, help and advice.


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## Phil65 (Feb 14, 2012)

Getting a pump was tricky I had to push hard and not take no for an answer (I didn't really meet NICE criteria) ........but is without doubt the best thing I ever did for my long term health and control.  The flexibility a pump gives you is amazing compared to a finger in the air half the time with MDI.  You will not regret it, that is for sure......hard work though initially but after a short time you will have your basals right and will not want to go back to MDI!!


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## RuthieG (Feb 15, 2012)

*To pump...*

Hi Katie

I went on a pump last week after much umming and ahhing about whether it was right for me as my control was fairly good without it.

I am 16 weeks pregnant, so that is what prompted me to go for it in the end, as I was having massive hypos.

I have had the pumo for one week and one day and so far I have to say I am shocked at hwo good it is. When I went for the fitting appointment and the nurse told me to cut down insulin by 25% (apparently this is nromal witha  pump) I didn't believe it would work but it really has and almost immediately maor highs and lows have disappeared. I am very happy so far. 

I find it quite fiddly to site the pump but hopefully I will get better at this with practice.

Your worry about yoru husband....it is quite weird being wired up to something all the time but it is very easy to disconnect and then all that is left is a small sticky thing that is easy to ignore (for you and your partner). I think he will get used to it and probably be grateful for it once your bloods improve.

From my very new experience I would say give it a try - I have thought of it as the next step in diabetes - and that can only be a good thing and if you find that it isn't for you, you just go back to what you were doing before

Ruth


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## RuthieG (Feb 15, 2012)

*To pump...*

Hi Katie

I went on a pump last week after much umming and ahhing about whether it was right for me as my control was fairly good without it.

I am 16 weeks pregnant, so that is what prompted me to go for it in the end, as I was having massive hypos.

I have had the pumo for one week and one day and so far I have to say I am shocked at hwo good it is. When I went for the fitting appointment and the nurse told me to cut down insulin by 25% (apparently this is nromal witha  pump) I didn't believe it would work but it really has and almost immediately maor highs and lows have disappeared. I am very happy so far. 

I find it quite fiddly to site the pump but hopefully I will get better at this with practice.

Your worry about yoru husband....it is quite weird being wired up to something all the time but it is very easy to disconnect and then all that is left is a small sticky thing that is easy to ignore (for you and your partner). I think he will get used to it and probably be grateful for it once your bloods improve.

From my very new experience I would say give it a try - I have thought of it as the next step in diabetes - and that can only be a good thing and if you find that it isn't for you, you just go back to what you were doing before

Ruth


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## imtrying (Feb 15, 2012)

Phil65 said:


> Getting a pump was tricky I had to push hard and not take no for an answer (I didn't really meet NICE criteria) ........but is without doubt the best thing I ever did for my long term health and control.  The flexibility a pump gives you is amazing compared to a finger in the air half the time with MDI.  You will not regret it, that is for sure......hard work though initially but after a short time you will have your basals right and will not want to go back to MDI!!



yeah that's what my team said, as I my HBA1c was 10.4%about 2 years ago, then I got it down to 9.something %, then just before DAFNE it was 8% and then after DAFNE it was 7.6%. So I could have shot myself in the foot by improving, but they are confident there are other criteria I meet anyway...plus it could still be improved (if they want to be picky!!). I also suspect that my latest HBA1c (taken last week) will be up as I'd had a chest infection as well as having joined the gym & all the fun that has brought with it!! 

thanks for taking the time to reply


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## imtrying (Feb 15, 2012)

RuthieG said:


> Hi Katie
> 
> I went on a pump last week after much umming and ahhing about whether it was right for me as my control was fairly good without it.
> 
> ...



Hi Ruth, thanks for replying. It's great to hear from someone who so recently has been through it. Getting my insulin down would be amazing as well. What a plus  I think I'd do it just for that! 
Thank you for sharing your experience


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## Phil65 (Feb 16, 2012)

imtrying said:


> yeah that's what my team said, as I my HBA1c was 10.4%about 2 years ago, then I got it down to 9.something %, then just before DAFNE it was 8% and then after DAFNE it was 7.6%. So I could have shot myself in the foot by improving, but they are confident there are other criteria I meet anyway...plus it could still be improved (if they want to be picky!!). I also suspect that my latest HBA1c (taken last week) will be up as I'd had a chest infection as well as having joined the gym & all the fun that has brought with it!!
> 
> thanks for taking the time to reply



Hi Katie, My DSN/Consultant/Team pretty much disregarded the NICE guidelines when I asked for a pump.  I just had to prove that I was able to Carb Count, knew my insulin to Carb ratios, understood corrections and diabetes.  I had to attend a 'DAFNE' type course (ran by my team).  We were given an accu chek expert meter (very similar to my pump meter). A couple of months later I had my pump!


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## imtrying (Feb 16, 2012)

Phil65 said:


> Hi Katie, My DSN/Consultant/Team pretty much disregarded the NICE guidelines when I asked for a pump.  I just had to prove that I was able to Carb Count, knew my insulin to Carb ratios, understood corrections and diabetes.  I had to attend a 'DAFNE' type course (ran by my team).  We were given an accu chek expert meter (very similar to my pump meter). A couple of months later I had my pump!



ooo this could be exciting then, as I've done my DAFNE (BERTIE) carb counting course a few months ago, and they've given me the Accu-Chek Aviva Expert meter, on the basis it will give me time to get used to it, as the pump I could go on would be the same thing!  my levels are still all over the place, but that seems to be purely down to exercising


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## Freddie99 (Feb 16, 2012)

With the team that started me pumping it was a case of ask and you'll probably get. The former consultant ignores NICE guidelines for the most part. 
I am rather attached to my pump after nearly two years. It makes my career and shifts much easier to manage in terms of diabetes. My HbA1c has been reduced and constantly around seven percent since pumping. I'm currently awaiting the results of another HbA1c that I had done at clinic last week. 
It sounds like you know what you're talking about and you're suitable. 

Good luck.

Tom


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## Phil65 (Feb 17, 2012)

imtrying said:


> ooo this could be exciting then, as I've done my DAFNE (BERTIE) carb counting course a few months ago, and they've given me the Accu-Chek Aviva Expert meter, on the basis it will give me time to get used to it, as the pump I could go on would be the same thing!  my levels are still all over the place, but that seems to be purely down to exercising



....One of the best features of a pump is the Temporary Basal Rate facility.  I always use it whilst exercising, shopping, dog walking, golf etc.


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## imtrying (Feb 24, 2012)

*Pump update*

I was expecting to hear this week about whether I'd be able to get the pump this week, but unfortuately my DSN hasn't had much luck. This is what she sent me...

"I am afraid that I tried to speak to person at Havering but htey were busy and were to call back but haven't.
I have had some contact which sounded quite positive but need to see how they feel about funding someone wh is receiveing diabetes care outside of the Havering area."

I'm now not feeling too positive anymore


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## Phil65 (Feb 24, 2012)

imtrying said:


> I was expecting to hear this week about whether I'd be able to get the pump this week, but unfortuately my DSN hasn't had much luck. This is what she sent me...
> 
> "I am afraid that I tried to speak to person at Havering but htey were busy and were to call back but haven't.
> I have had some contact which sounded quite positive but need to see how they feel about funding someone wh is receiveing diabetes care outside of the Havering area."
> ...



....Stay positive and keep nagging them Katie (you have to push them!) My consultant/DSN recommended me for a pump and my PCT was in a different county (I prefer and handpicked my D Team in West Sussex although my Postcode should have meant I used Hampshire) ....got it no problems.


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## Pumper_Sue (Feb 24, 2012)

imtrying said:


> I have had some contact which sounded quite positive but need to see how they feel about funding someone wh is receiveing diabetes care outside of the Havering area."



This is a load of old bull 
The funding comes from where you live or where your GP is.
It's nothing to do with the hospital.
Basicaly who ever it who pays for your consultation at the hospital is going to have to pay for the pump.
Don't give up. Infact contact INPUT now to clarify what's right.


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## imtrying (Feb 24, 2012)

thanks guys. 

I didn't move my diabetes team when I moved house (and therefore doctors) as they are so good. I did this for the benefit of my health. If it works against me I will be making a large number of complaints to whoever I can think of!

Phil - thanks, it's good to know going across boroughs didn't affect you.

I'm still keeping my fingers crossed!


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## Phil65 (Feb 24, 2012)

imtrying said:


> thanks guys.
> 
> I didn't move my diabetes team when I moved house (and therefore doctors) as they are so good. I did this for the benefit of my health. If it works against me I will be making a large number of complaints to whoever I can think of!
> 
> ...



Here you go Katie, Taken from INPUT:


NHS funding for insulin pumps
John Davis, who runs the pump support group INPUT, looks at the current funding situation in Britain 

Is insulin pump therapy provided by the NHS?
In a word, yes. However, obtaining an insulin pump on the NHS is not as simple as seeing your GP and asking for it. Sometimes a doctor or diabetes specialist nurse (DSN) first suggests that a patient might benefit from a pump; some people are considered for a pump after asking their diabetes consultant or DSN about it. However, before a pump can be prescribed, the patient (or the patient's carer), the GP, and the diabetes consultant must all agree that a pump is the way forward. 

In order to receive a pump and pump supplies bought by the NHS, patients must meet certain criteria. The 2008 National Institute for Health and Clinical Excellence (NICE) technology appraisal on insulin pump therapy says: 

Continuous subcutaneous insulin infusion or "insulin pump" therapy is recommended as a possible treatment for adults and children 12 years and over with type 1 diabetes mellitus if: 

attempts to reach target haemoglobin A1c (HbA1c) levels with multiple daily injections (MDI) result in the person having "disabling hypoglycaemia". For the purpose of this guidance, disabling hypoglycaemia is defined as the repeated and unpredictable occurrence of hypoglycaemia that results in persistent anxiety about recurrence and is associated with a significant adverse effect on quality of life. OR 
HbA1c levels have remained high (8.5% or above) with multiple daily injections (including using long-acting insulin analogues if appropriate) despite the person and/or their carer carefully trying to manage their diabetes. 
Regarding children in particular, the NICE guidance says: 

CSII therapy is recommended as a treatment option for children younger than 12 years with type 1 diabetes mellitus provided that MDI therapy is considered to be impractical or inappropriate. 

The NICE guidance does not mean that a person"s HbA1C must be higher than 8.5% in order to have a pump. It mentions 8.5% because when person has an HbA1C level of 8.5% or higher, he or she is likely to require much more care from the NHS than is usually needed by someone with an HbA1C below 8.5%. Based on the results of the DCCT, most doctors now agree that it is best for all people with diabetes to keep an A1C level below 7% to prevent or delay complications of diabetes. 

Also, it is important to note that severe Hypoglycaemia is not only when an ambulance is called or a person needs glucagon. According to the NICE guidance, needing help from another person to treat a hypo or being unable to do daily activities because of hypos, or fear of hypos, means Hypoglycaemia is disabling. 

The NICE guidance is intended to help doctors, patients, and PCTs understand when a pump may be appropriate for a given patient. The final decision whether to go on a pump rests with the diabetes specialist ("diabetologist" or "diabetes consultant") and the patient. If a diabetologist recommends insulin pump therapy, a PCT cannot refuse to fund insulin pump therapy on grounds of cost. PCTs are also not allowed to create "waiting lists" for pump therapy. Anyone who has heard from a PCT employee rather than a practicing doctor that he or she is not eligible for a pump, or who has been placed on a "waiting list" to begin insulin pump therapy, is requested to contact INPUT for advice. 

The Secretary of State for Health expects that PCTs will pay for insulin pump therapy for all patients for whom a pump is recommended by a doctor. Anyone who is self-funding their own insulin pump therapy is requested to contact INPUT for advice on whether they may be entitled to PCT funding. 

The information above is taken from the INPUT website.


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## imtrying (Feb 24, 2012)

Thanks Phil (& Sue for the suggestion!) That's really helpful. I shall copy and paste that somewhere I can find it again! 

Sounds like really what my diabetes team needs is the buy in from my doctor....I have my 'annual diabetes review' (in commas as I think it's a joke!) I shall ask them questions about the pump then and baffle them with lots of diabetes talk and see if that gets me anywhere!


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## Pumper_Sue (Feb 24, 2012)

> Is insulin pump therapy provided by the NHS?
> In a word, yes. However, obtaining an insulin pump on the NHS is not as simple as seeing your GP and asking for it. Sometimes a doctor or diabetes specialist nurse (DSN) first suggests that a patient might benefit from a pump; some people are considered for a pump after asking their diabetes consultant or DSN about it. However, before a pump can be prescribed, the patient (or the patient's carer), the GP, and the diabetes consultant must all agree that a pump is the way forward.



That's not quite correct.  My GP demanded I was given funding for a pump. No Consultant would say yes due to me using animal insulin. SO infact a GP can apply and get funding for a patient requiring a pump 

But the NICE guidelines are not an issue here it's the DSN who has her wires crossed regarding who is paying for the funding.

PS John Davis has retired from INPUT.
Lesley Jorden is in charge now and doing a fantastic job just as John did


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## imtrying (Feb 24, 2012)

Pumper_Sue said:


> That's not quite correct.  My GP demanded I was given funding for a pump. No Consultant would say yes due to me using animal insulin. SO infact a GP can apply and get funding for a patient requiring a pump
> 
> But the NICE guidelines are not an issue here it's the DSN who has her wires crossed regarding who is paying for the funding.
> 
> ...



thanks Sue.

So...(I think I've got myself a little confused too)...who would be funding my pump? The PCT where my diabetes team is, or the PCT where I live/am registered with a doctor? (sorry if I'm being dense here)


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## sofaraway (Feb 24, 2012)

imtrying said:


> thanks Sue.
> 
> So...(I think I've got myself a little confused too)...who would be funding my pump? The PCT where my diabetes team is, or the PCT where I live/am registered with a doctor? (sorry if I'm being dense here)



The PCT where your GP is pays for the pump and consumables. It's hard to tell from the email but it sounds like your DSN could have emailed the people at Havering PCT who are in charge of funding(not the hospital/team) to confirm that funding would be avaliable for you. If they say yes, then all can go ahead. 



My expereince is, my diabetes team is in another PCT to where I live/my GP is. No problem. Behind the scenes my consultant will have written to my PCT to request funding, PCT will have checked the referral and that I met the criteria (which i do). Sent confirmation to my consultant that yes they agree for a 6 months trial of pump therapy. 
My DSN then booked my start date and ordered my pump. 

Feel free to PM/FB me if that doesn't make sense


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## trophywench (Feb 24, 2012)

The PCT where you live.  That is 100% definite, Sue is absolutely correct.

I'm under Warwickshire PCT but ALL my medical care - GP and hopsital - takes place in Coventry PCT.  So Warwickshire pay for everything.

Let's say either of us was unhappy with our D team and asked to be transferred to somewhere more expert - I know - let's pick OCDEM - ie the D service at Oxford - or indeed the one in Bournemouth as we both did a version of BERTIE - Warwickshire would pay for it instead of paying Coventry.

Funnily enough look at this page

http://www.ocdem.ox.ac.uk/clinical-care

You see the patient in the blue shirt? - well I know him and so does Natalie123, because of two different committees we serve on.  If I'm not wrong, he lives in Warwickshire too.

It's just a matter of who the pump company actually send their bills to.

My hospital are entirely used to this because they have patients from Coventry, Warwickshire, North Warwickshire and the West Midlands (accidents of geography etc) so it's just a matter of sending off the funding request to the right place to begin with.

Think about this one - say I needed a kidney transplant? - I would most definitely be sent to Oxford.  But Warks would still have to foot the bill.  A friend was actually referred by the local hosp to a consultant in London for her kidneys, for a second opinion.  She then went back to the first one having received totally conflicting info from the second one and said, one of you is wrong but I don't know which one.  So he then sent her to Oxford and he agreed with the first one and that's where her surgery was done.  And Warwickshire paid for the lot.


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## trophywench (Feb 24, 2012)

NOT the PCT where your GP is.  The PCT where YOU live.


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