• Guest - w'd love to know what you think about the forum! Take the 2025 Survey »

advice from u pumpers please!

weeezer

weeezer

Well-Known Member
Messages
272
Location
bristol
hi pumpers

i'm new on this forum...looks like a grrreat place for support & advice, wondering if any of you seasoned pumpers can help??

been t1 for 12 years, lived in 3 different areas in that time with varying degrees of care, where i am at the mo is quite bad, and i feel very left to 'get on with it'. always had a 6 monthly appt for a diabetic clinic but since i was discharged from my pre/post-natal care in 2010 after having my baby girl, i haven't really been under any care, my local surgery insist there is no need to see a consultant if i haven't got any 'diabetic issues'. i get a yearly eye check, but that's it, and i took myself along to get a few basic tests done inc hba1c, which for the first time ever is in double figures - 10.7, always been 6-7, 5 point something in pregnancy, once it was 9 something, but got it back down quickly (i think this one is down to an excessive christmas with not much testing going on). as a result of the latest high result, a diabetic nurse is paying me a visit next week (weird, i can't go and see her, she has an office at my local surgery but can't use it as a consulting room so has to do home visits)

anyhoo (if you're still reading, thanks!) i really want to go on a pump, but how on earth do i go about convincing anyone i should be given one? should i just ask? can i use this latest lapse in control as a reason for needing one or should i prove i can be a most excellent monitor & injector before i ask?

any advice gratefully received, should i even worry about going on a pump? last few times i've mentioned it to anyone, my hba1c was 6 point something and was told i wouldn't get any better results with a pump so advised not to worry about it. (surely the hope is to achieve a 5-6 like a person with a fully functioning pancreas would be able to get?)

what do y'all think?

weezer xx
 
If I remember your hba1c needs to be above 7 consistently for you to be considered for a pump along with frequent hypos, that was the case for me anyway
This figure may be slightly out although you really need some regular monitoring..
 
Hi
My son (type 1 , diagnosed at 20 months now four and a half) is now on a pump and has been for over a year.
Shortly after his diagnoses I pushed for the pump but the process took a while and we can’t fault the help we got from our care team at the local hospital. My view was that after being awarded the funding process for the pump , even if for some reason he was not able to use it or take to it, “we had it” and if it stood on the shelf for 6 months till he was ready the important point was that it could not be taken away.
During may hours of research it was apparent that the policy RE the pump depended on your post Code. I was in contact with people in neighbouring regions that has vastly differing experiences in trying to get the pump, One that received it a couple of months after becoming Type 1 and an other who had battled some years after being diagnosed. We were lucky along with the support of the staff at our local hospital.
I have yet to meet someone that is negative about the pump, although some did have minor complications with it, the benefits far outweighed the any negatives.
 
You just ask for a referral to the hospital clinic, it's better if you first though if you contact www.input.me.uk if you phone them they should be able to tell you your nearest pump friendly clinic/consultant is, and this is where/who you ask your nurse to refer you to..

On the input site, you can get the information of insulin pump therapy, what pumps are funded, NICE guidelines if you hit any problems they will help support you through the process just contact them..

As to NICE guidelines you will here a lot of people, even consultants and clinics say what criteria you must fullfill for funding, most are talking out of their hat... Firstly you don't have to fit all the criteria Just one will do, your clinic/consultant/PCT can not cherry pick the guidelines to determine who does and doesn't get funding the PCT can not stall funding by saying we only fund xxx pumps a year... If your consultant says yes to pumping the PCT is legally bound to provide funding asap for treatment to start.. Anybody saying or doing any are doing nothing but stalling which basically is breaking the law... If you hit any of these problems again contact Input they will help, if you need help building your case they will guide and help you....

Sadly even now there is little consistency of pump prevision, some clinics even pump clinics are very proactive about getting suitable patients up and running on pumps, others will drag their feet at every stage of the process, fingers crossed that your clinic are one of the more proactive ones..

But what ever anybody tells you if you want a pump don't give up, but battle on you will get there it might just take time..

I battled for 3 years to get my pump, not only was I working with the old NICE guidelines which weren't as helpful, but I also my clinic and PCT were very pump unfriendly, to the extent that when I ask my Surgery DSN she was more than happy to make the referral and would help as much as possible, but not to build my hopes up as pumps were as rare as hen's teeth in our area...

Some advise here that will not only hold you in good stead if you have to fight for your pump but will also give you a very good start to pumping if you don't..

Do your research in to insulin pump therapy, talk to those who already pump a good emailing list to join is www.insulin-pumpers.org.uk, good book to invest in is Pumping Insulin by John Walsh learning how to deliver insulin via a pump to counter react a situation, food eaten, exercise taken... Learn/identify where your current control problems lay do you have PD, background insulin doesn't flatten your basal enough to work your quick off, your sensitive to insulin, so might injecting a whole unit either dumps you in the boots or sends you high as a kite..

What your aim in all this is, to be able to say "I need a insulin pump because of x,y,z" place your printed out data on the table, with highlighted highs and/or lows and be able to point to then saying "that hypo or that low, I could have avoided or limited it's impact if I had a pump, because I could have used this or that function to counteract before a real problem arise"

It is very hard work, time consuming and quite frustrating and at times soul-destroying I know as I did it for 3 years but I did benefit, as I had a flying start was up and running very quickly, so quickly that my team were amazed and shocked but when you know what problems you need your pump to resolve the easier and quicker it is to resolve them...

And if you need an hand to build your case give me a shout I be more than happy to help
 
wow thanks for all info...i am inspired to get as much info as poss before asking for one.

by the way, my latest hbA1c was 6.8 not 10.7 (silly doc was giving me glucose reading, durr!)

jopar - what is 'PD'?
 
Sorry weezer

A bit of a typo error should have been DP for Dawn phenom, where your BG rises sharply in the morning can start early arount 6-7am lasting until mid morning without my pump in the morning my BG can got up 5mmol/l or more in just an hour..

How did you get on with your nurse?
 
ta for asking jopar! nurse was great, she has promised (almost anyway) to get me into the clinic again, and specifically to the dietician to help with carb counting and hopefully onto a DAFNE-esque course. i asked about pump, she said the folk at the clinic would be able to help and guide me on how to get one (got the impression she thought i didn't need one, A1c 6.8 but when i explained this is achieved with many hypo's she said a pump should help coz of the sheer hard work you do to get everything working well). so all in all, a success...just need to be on the ball with chasing them coz i've been ere before where i've been promised referrals :(

might be back for more help when i'm trying to get me hands on one! thanks
 
Hi I have asked about a pump due to being in hospital 5 times with DKA with a BM. Of 33 plus does any one think I fit the criteria ?
 
Back
Top