novorapidboi26
Well-Known Member
- Relationship to Diabetes
- Type 1
LOL, it is normal to diabetics...............🙂..............
If it works, great..........
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Pump funding update
- Thread starter imtrying
- Start date
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LOL, it is normal to diabetics...............🙂..............
If it works, great..........
trophywench
Well-Known Member
- Relationship to Diabetes
- Type 1
Abso-flipping-lutely.
Job done!
And there was me I sent you a PM to say exactly what all the replies meanwhile have already said !
A nod's as good as a wink to a blind man .......
And if they only had 2.75 pumps a year to dispense, Diabetes teams would not even be saying the word 'pump' to most of us, just as they didn't in the not so dim and distant past.
- Relationship to Diabetes
- Type 1
- Pronouns
- He/Him
I don't think anyone here is suggesting 'twisting the truth'. Just realising that if the fear of hypos affects your quality of life (and I think that would be the case for many many T1s) then the NICE guidelines say you qualify for a pump if your consultant/team agrees and believe you have done as much as you can on MDI to solve your problems and come to a brick wall at the end.
I think you'd have a very good case yourself NRB (though I appreciate pumps North of the border are harder to come by). Your DP for example is all but impossible to deal with effectively without a pump. And your higher carb intake is easier to manage with a pumps advanced delivery patterns.
novorapidboi26
Well-Known Member
- Relationship to Diabetes
- Type 1
Your right, as you say, its all about the interpretation of the guidelines...........which varies from consultant to consultant..........🙂
Robster65
Senior Member
- Relationship to Diabetes
- Type 1
I'm in very much the same boat but within the 'non-patient-choice' system in Wales.
I've enquired on the basis of running out of viable injection sites. Slightly exagerrated but 5 a day plus corrections does take its toll after 30+ years with hopefully another 30+ ahead (I'm 46 with no complications).
I'm going to see the local consultant within the next 6 months or so (treated as new patient) to discuss and get his two pennerth. I'll mention the fear of hypos, the constant battle to keep BGs within range and the stress of finding a suitable injection site. But one criterion is DAFNE. Which is held 50 miles away. I refused to go that far to tick a box. So I'll go for demonstrating carb counting as NICE demands.
And then we'll see what comes of it. I don't particularly want a pump but then I'm pretty sick of injecting so it's about the next best thing available.
I really hope they play ball with you katie, and anyone else hoping for one.🙂
We shouldn't have to beg for one and then live in fear of funding being withdrawn.
And they wonder why we become cynical! 🙄
Rob
I've enquired on the basis of running out of viable injection sites. Slightly exagerrated but 5 a day plus corrections does take its toll after 30+ years with hopefully another 30+ ahead (I'm 46 with no complications).
I'm going to see the local consultant within the next 6 months or so (treated as new patient) to discuss and get his two pennerth. I'll mention the fear of hypos, the constant battle to keep BGs within range and the stress of finding a suitable injection site. But one criterion is DAFNE. Which is held 50 miles away. I refused to go that far to tick a box. So I'll go for demonstrating carb counting as NICE demands.
And then we'll see what comes of it. I don't particularly want a pump but then I'm pretty sick of injecting so it's about the next best thing available.
I really hope they play ball with you katie, and anyone else hoping for one.🙂
We shouldn't have to beg for one and then live in fear of funding being withdrawn.
And they wonder why we become cynical! 🙄
Rob
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- Type 1
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DAFNE was discussed with me but my DSN and I agreed that I was already carb counting/correcting/tweaking/coping in a sufficiently DAFNE-style way as to not require the course to meet the guidelines (though I could be referred to it if I wanted it).
Robster65
Senior Member
- Relationship to Diabetes
- Type 1
She said last visit that it was a hard and fast requirement but mentioned this time something about our area needing to do it if people couldn't travel the 50 miles.
I don't think she's clued up about the NICE requirements. She just knows what the PCT dictate. She'd never heard of INPUT either.
I think the PCT/clinic are pro-pump and don't have trouble giving them out but don't have enough bodies to process more than a few per year.
I'm not deserate and not even sure I want to go ahead but I'd like the option if I need it.
Rob
Pumper_Sue
Well-Known Member
- Relationship to Diabetes
- Type 1
Hi Rob,
please read the NICE guidelines very carefully. There is no mention of DAFNE in them at all.
The requirement is that you can demonstrate carb counting is A OK.
PCT's etc can not make the rules up as they go along just to please themselves. In many cases it's just a delaying tactic so as not to cough up for the pump. Doing this actually costs them more in the long run though.
I refused point blank to make a 100 mile round trip to do a DAFNE course. I have always carb counted so a complete waste of my time and very limited energy.
imtrying
Well-Known Member
- Relationship to Diabetes
- Type 1
That's great Rob!! A pump was suggested for me for 2 reasons - 1 being my trouble with levels and exercise, and the 2nd was all my injections sites are screwed
they're concerned about the lumps on my arms, they've banned me from my stomach, and the cellulite I suffer as a result of injections in my legs is probably making the situation worse too. I hope, whatever you decide, that you at least get a choice, and that one is not made for you.
We could be pumping newbies together!!
trophywench
Well-Known Member
- Relationship to Diabetes
- Type 1
I have a sneaky suspicion (nudge, nudge, wink, wink) that the BERTIE online course will be relaunched in an updated format, sometime ......
imtrying
Well-Known Member
- Relationship to Diabetes
- Type 1
Oh and did I mention I am meeting with my DSN this Friday, 4pm?? After seeing my GP at 9.30am??
And for some reason I craved my mum, and have asked her to come with me. I know it's not a big deal appointment, but I'd really like to have someone hear the same things as me so that I won't feel so alone with my diabetes management all the time (apart from you guys!!)
And for some reason I craved my mum, and have asked her to come with me. I know it's not a big deal appointment, but I'd really like to have someone hear the same things as me so that I won't feel so alone with my diabetes management all the time (apart from you guys!!)
Robster65
Senior Member
- Relationship to Diabetes
- Type 1
That's great Rob!! A pump was suggested for me for 2 reasons - 1 being my trouble with levels and exercise, and the 2nd was all my injections sites are screwed
I hope, whatever you decide, that you at least get a choice, and that one is not made for you.
We could be pumping newbies together!!
I have no-go lumps at the tops of both arms and central area of stomach. Buttocks feel lumpy to me but not sure (didn't get DSN to feel this time. Maybe next visit - lucky lady! 🙄). Thighs seem ok but need to be careful.
I tend to bruise easily in certain areas too which puts places out of action for couple of days or so.
I suspect you may be pumping before me but I'm sure I'll get there one day. My HbA1c was 6.3/6.2 but I'm due for another in next few days so will see how it goes. But certainly too low for me to claim difficulty with control or running high due to fear of hypos. Can only go on sites and 'normal' fear of hypos/complications.
Rob
imtrying
Well-Known Member
- Relationship to Diabetes
- Type 1
Yeah but this is where I think the guidelines are flawed....a HbA1C of 6.2% does not necessarily mean good control (I'm sure it is in your case) but it can also mean fluctuating levels...which are still a problem, and don't mean that you don't suffer bad hypos!
As an aside...I also don't understand why the whole 'hypo' thing is solved with a pump??
See what your
novorapidboi26
Well-Known Member
- Relationship to Diabetes
- Type 1
I think the fact pumps can deliver much smaller, more accurate doses are what stop the hypos........
Pumper_Sue
Well-Known Member
- Relationship to Diabetes
- Type 1
You would be suprised how many haver lower A1c's but still have non ideal control as in swinging from high to low.
I have a friend on another forum who has a pump his A1c is 5.3% and has been for many years. Even pre pump. He qualified because he had a fear of having a hypo at 3.30 pm when picking the kids up from school 🙄
My A1c was in the very low 6's when I had my pump.
If you have lumpy injection sites then best to go for a pump sooner rather than later. This is due to scar tissue as you know, and you can not put cannulas in or near the lumps. Thus no point in a pump if no place to put the cannula.
So stop wasting time go for it. 😛
trophywench
Well-Known Member
- Relationship to Diabetes
- Type 1
It isn't solved, 'just like that' - nothing is!
But because you have no long acting insulin in your body if you spot you are heading downwards, you can always turn your pump completely off for a bit, so you don't then necessarily, have to hit eg a 3.7 with MASSES of carbs - just a quick flash of short-acting, not necessarily any long-acting and if you can 'head em off at the pass' it potentially keeps your BG on the straight and narrow for far longer in every 24 hours than would ever be possible on MDI after a hypo. Or most likely without any too.
You will presumably already know it gives the opportunity to make micro-adjustments to all insulin doses (bolus and basal) so you don't have to round up or down with meals or correction doses which has the same effect as described above.
Most of what I honestlly thought I already knew about my body's basal dose requirements during an average day, has been shot to pieces since going on my pump. I didn't know what my body wanted - I only knew how to keep it relatively happy using Levemir and rounded up/down doses of Novorapid ......
But because you have no long acting insulin in your body if you spot you are heading downwards, you can always turn your pump completely off for a bit, so you don't then necessarily, have to hit eg a 3.7 with MASSES of carbs - just a quick flash of short-acting, not necessarily any long-acting and if you can 'head em off at the pass' it potentially keeps your BG on the straight and narrow for far longer in every 24 hours than would ever be possible on MDI after a hypo. Or most likely without any too.
You will presumably already know it gives the opportunity to make micro-adjustments to all insulin doses (bolus and basal) so you don't have to round up or down with meals or correction doses which has the same effect as described above.
Most of what I honestlly thought I already knew about my body's basal dose requirements during an average day, has been shot to pieces since going on my pump. I didn't know what my body wanted - I only knew how to keep it relatively happy using Levemir and rounded up/down doses of Novorapid ......
Phil65
Well-Known Member
- Relationship to Diabetes
- Type 1
Phil65
Well-Known Member
- Relationship to Diabetes
- Type 1
Sue, I attended a SAILING (Self Adjustment Insulin Learning in Groups) course prior to my pump, it was a course ran by my DSN/dietician.....I poo-hooed the idea of attending such a course (x6 1 day/3 hour sessions spread over 6 weeks) for me I considered it to be a waste of time, I understood carb counting, had good control on MDI and "understood" Diabetes!.......I was wrong, I met 5 other Type 1s who were male and female, differing ages, who all managed their diabetes in different ways/regimes....I found the interaction with other Type 1s fascinating, enjoyable and in my way tried to offer advice and help to some of them who were obviously struggling with their D. I had never really known another Type 1, incidentally I was the only one that got a pump and indeed was the only one that wanted one. I didn't learn too much from the course itself but it made me realise that actually I know quite a bit about it and I enjoyed helping others that were not as confident.
Robster65
Senior Member
- Relationship to Diabetes
- Type 1
I'm on the waiting list for an appointment with the local consultant, so I can put all of this to him and gauge his reaction. If he's not going to listen, I'm not able to go elsewhere so I'll have to open a can of NICE woop-ass on him and see what effect it has. By nobody's standards am I an urgent case, so I would imagine my best hope would be a couple of years on the waiting list. But I don't intend to be shrugged off if I feel I'm elligible. The fear of hypos is a grey area because sometimes I just take them in my stride and others I feel petrified but I will happily emphasise the latter if that's what they're interested in.🙂
I'll tell them aunty Sue is coming to get them if they don't play ball !
Rob
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