I didn't really see this coming...

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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'?
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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.
 
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.
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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 :confused:
 
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.
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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.
 
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.
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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.
 
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 :confused:
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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.
 
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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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.
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get your backside down to B-Dec kiddo :D Best pump clinic in the country with some seriously epic amounts of funding!
 
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.
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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
 
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.
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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
 
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
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awww thanks bev, you just made me smile huuugely :D
 
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.
 
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.
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combo all the way :D 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 :D
 
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.
 
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!
 
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!
 
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
 
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! 😉
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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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