# I'm going to try again....



## aymes (Oct 24, 2010)

Some of you on here will know that for a long time now I have been trying, unsuccessfully, to get on a pump. Last time I met with the consultant there was a glimmer of hope but that has since led to nowhere.
My main reason is that I don't meet the NICE criteria. Previously I was having a lot (4 or 5 a day) of hypos but have since got those under control and don't get many now. My last a1c, 6 months ago, was 7.5. I suspect this may have gone up for my next reading on 2nd November, although I doubt this will reach the 8.5 NICE want. So I seem to be stuck somewhere in the middle between not getting the control, I feel, is tight enough and the, somewhat arbitrary levels suggested in the guidelines. 
I am however convinced that I would hugely benefit from a pump and that, ignoring the guidelines, I should be a strong candidate. When I meet with the consultant on the 2nd I'm going to try to plead my case again and think I'm going to go equipped with a letter detailing my case so I don't forget anything. I want to include the points below but I'd appreciate any opinions of anything I've left out or misunderstood, any tips etc.

- I appear to increasingly be suffering from the Dawn Phenomenon. My levels seem to stay very steady over night then climb around 6am, I have pages of test results to back this up. On MDI I can see no way of practically tackling this.
- Most likely as a result of the above my a1c seems to be climbing. I am so motivated to want to sort this, have really done my research and am willing to put in so much work and so am reluctant to have to wait until my a1c is even higher before I can have access to the tools I need to get it under control.
- I am a runner, currently doing half marathons but hoping to tackle marathons next year. I really think a pump will benefit me to achieve these ambitions. My job involves erratic hours and planning exercise is difficult. Having the opportunity to work with various basal levels be a huge advantage as at the moment my only real option is to eat before exercise. I always find that my weight increases as my running fitness improves which is frustrating and quite frankly unfair! This is the point in particular where I'd appreciate any input around whether the pump would be a real benefit or not.
- My job is quite varied, including delivering training, running events and a lot of travelling. Eating is usually on the move and injecting can be trickly depending on the circumstances. It's not uncommon for me to either not eat, to avoid the need for an injection, or snack without always injecting straight away, meaning high levels. I do think a pump would be of real benefit in these situations.

Any feedback, or suggestions how I could make my case stronger, would be appreciated! I think maybe my case rests more strongly on lifestyle factors than clinical (although that is there too) which is why I'm struggling to get a yes. Also planning to contact John at Input for advice!


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## tracey w (Oct 24, 2010)

Aymes I feel your pain, but as you know i was lucky enough to have an understanding consultant.

I did not fit the nice critera but my consultant say how motivated i am to be healthy and how hard i was trying to control my swinging levels.

I think after reading your post the thing that stands out for me is that being on mdi is impacting on your quality of life, especially if you avoid eating or if you do its difficult to inject and then you end up high. This is not right, also more than anyone as diabetics we need a healthy diet and plenty of exercise, but the fact you have to increase your food input and then gain weight is not healthy in the long run.  If i were you, yes i would talk about dp, however it is obvious that a pump would significantly improve your quality of life.

My dsn told me that being on a pump, the main thing they like to monitor is that it has had a positive impact on *quality of life *and not necessarily *hba1c*, as we all know can be skewed with lots of hypos or highs. Yes they monitor hba1c but there are other factors to take into account.

Just because you are not having disabling hypos your quality of lifeis affected and you need to put this accross. 

e.g. i told my consultant that i always go low around 5pm, usually when i drive home (not a problem with the pump as i can change basal rate, on mdi i would always hypo and have to test lots to avoid the hypo around this time, i could not sort it. If i lowered lunch bolus i would be high), the consultant said " I bet this makes you feel scared and is affecting your confidence as you are having to drive at these times", He knew i wasnt but he was looking for reasons to say yes for the pump.

I hope this helps you in some way, and if you are unseccessful maybe change consultants?


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## Ellie Jones (Oct 24, 2010)

Memories brought back of my 3 year battle to get a insulin pump..
It seams that your main case is going to be surrounding the ?Quality of Life? criteria of the guidelines. 

I see that you say you?ve got a lot of underpinning BG data, it be a good idea to highlight some of them and say how with a pump you?ve could have avoid or helped the situation...

Your two top cards are going to be, the DP and training for a marathon...
Marathon wise, you need to train when you training you need to lower your background insulin but because of it?s limitation that you it takes a couple days to take effect, then this isn?t possible but with an insulin pump you can create a separate profile or use the TBR and you are better able to tackle any time lag from training, and well actually running the marathon you got your pump ready to adjust if needs be during the marathon etc..

The DP, well adjusting to tackle this actually causes problems else where, and also causes problems with training as above..

Use your data to highlight areas. With, this what happened if I had a pump I could have turned it down or up etc avoiding the situation, adding to this your erratic working patterns... Say a hypo you suffered, because you injected for what you thought would be your work routine, but it changed but because you already taken your insulin, then it was cope as best you could..  If you have an insulin pump you?ve could have turned down the pump to avoid the hypo

If the consultant suggests that well you don?t comply with the NICE guideline your HbA1c is below 8.5% then remind him that you aren?t required to fulfil all the criteria only parts of it...  So in your case due to ?Quality of Life? and you?ve done everything humanly possible to get MDI to work for you, then you do fit the criteria sufficiently to have an insulin pump funded..  If he/she insistent of the HbA1c ask him to show you where it says that in the Guidelines?  And remind he/she that they nor the PCT at liberty to choose what aspects of the guideline they want to use....

Good luck, do contact John I will have my fingers crossed...


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## Rainbow (Oct 24, 2010)

My HbAlc was 6.9 when I got my pump. I also submitted a written statement outlining the difficulties I was having at work. I had considered handing in my notice as I couldn't find a regime on MDI that suited my lifestyle. I backed it up with lots of scenarios to support my application. The only thing I can add is I used CGM data to further demonstrate the difficulties I was experiencing. 

Really hope you get one, mine has made each day so much better and life is worth living again.


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## rossi_mac (Oct 24, 2010)

Aymes,

Hope it all goes the way you want it, your points make sense to me!

Good luck,

Rossi


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## bev (Oct 24, 2010)

I do hope you can make them understand just how much difference this will make to your life and how much happier you will feel. I dont know how to put forward a case for an adult but there have been some good points raised on here already and I hope they give you the motivation to carry on trying. John at INPUT will help you I am sure.Bev


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## purpleshadez (Oct 25, 2010)

I feel it is also worth noting that you only need the consultant to agree and recommend you for insulin pump therapy. The PCT must accept the consultants judgement on this and supply the funding required. They cannot refuse funding on grounds of the cost. If your consultant tries to tell you any different then call them on it or better yet, see another consultant. Good luck 



> 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.



Source: http://www.insulin-pumpers.org.uk/ukfunding/


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## novorapidboi26 (Oct 25, 2010)

I hope you can get a pump, I will be starting enquiries next month, purely down to the dawn phenomonon and my struggle to get below 8% HbA1c, although I feel the last month or so I may actually be below 8%.

Dont think I have a chance though as discussed previosly, my quality of life isnt really affected by the high mornings, its just a pain in the bum........


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## purpleshadez (Oct 25, 2010)

novorapidboi26 said:


> I hope you can get a pump, I will be starting enquiries next month, purely down to the dawn phenomonon and my struggle to get below 8% HbA1c, although I feel the last month or so I may actually be below 8%.
> 
> Dont think I have a chance though as discussed previosly, my quality of life isnt really affected by the high mornings, its just a pain in the bum........



Or, it is causing undue stress and anxiety which is in turn affecting your quality of life?


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## novorapidboi26 (Oct 25, 2010)

purpleshadez said:


> Or, it is causing undue stress and anxiety which is in turn affecting your quality of life?



I probably could make a good case but it wouldnt be realistic, I will see what my nurse thinks.........


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## tracey w (Oct 25, 2010)

Rainbow said:


> My HbAlc was 6.9 when I got my pump. I also submitted a written statement outlining the difficulties I was having at work. I had considered handing in my notice as I couldn't find a regime on MDI that suited my lifestyle. I backed it up with lots of scenarios to support my application. The only thing I can add is I used CGM data to further demonstrate the difficulties I was experiencing.
> 
> Really hope you get one, mine has made each day so much better and life is worth living again.



Absolutely well made points about lifestle quality! Glad things worked out for you.


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## tracey w (Oct 25, 2010)

novorapidboi26 said:


> I probably could make a good case but it wouldnt be realistic, I will see what my nurse thinks.........



who says its not realistic? you have to have reasonably tried all you can to get below 8%, and even if you do dont worry about it.

when i first applied my hba1c was 8%, next time i saw consultant i had done dafne and it was 7.8%, the dsn deemed that dafne "had been a success", however the consultant undertood that my lifestlle was affected by my diabetes control, i too spiked massively after breakfast no matter what i tried. Just one of my reasons admittedly.  I struggled with exercise, driving, making me test very frequently as i was "paranoid" (not literally )  about hypos whilst driving, making me anxious at work, etc etc.

you need to show motivation for pump therapy, its hard work, but well worth it.

You also have had to tried everything "medically" including lantus.......i had to be put on this before the consultant could apply for funding.


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## Steff (Oct 25, 2010)

Aymes good luck with getting a pump x


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## Twitchy (Oct 27, 2010)

Hi Aymes,

My consultant originally suggested a pump for me to combat DP - he told me it was the only way to treat it... being an utter numpty I was a bit scared of the whole idea & insisted I try doing 3am boluses for a bit to see if I could 'live with' the situation on mdi...doh!  For some reason the 3am boluses seemed to have really hit & miss effects meaning I'd either continue to go really high or by hypo by the time I woke up again at 6ish. By the time I'd come round to the idea of a pump & realised that it was my only hope for a full nights sleep or waking up feeling at least vaguely human I was pregnant & they wouldn't let me start on a pump (long story)!  Finally I started on a pump early sept this year & it's been amazing - the basal profile works on the DP so much more reliably so I'd suggest this is a strong argument for you to make... incidentally when approved for a pump my HbA1c was around 6, so that shouldn't be a show stopper.  My doc also knew I had completely given up on exercising as I couldn't manage the sugar levels on mdi, and was having problems with my weight too due to 'eating up' to the insulin I was injecting so that I could get some kind of reasonable sugar levels... all this has been made so much better by the pump, so more arguments! 

Best of luck, do let us know how you get on! 

Twitchy xx


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## aymes (Oct 31, 2010)

Thank you everyone for all your feedback. I'm just in the process of putting a statement together to take with me on Tuesday, I'll key you know how I get on...


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## sofaraway (Oct 31, 2010)

Best of luck Aymes, I really hope you are successful. I am also hoping to get a pump and exercise and sport is one of my major reasons.


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## tracey w (Nov 1, 2010)

Good luck Aymes, you to Nikki


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