Replies to This Discussion

Permalink Reply by still_young_at_heart on November 27, 2011 at 3:32pm

Wow! I just read the NHS guidance on pumps and it is to use a technical term - nuts. I doubt if you want to try to hit an A1c of >8.5 but you might try to keep tight control and carefully record all of your hypos. Persistent hypoglycemia causing anxiety is a reason that a pump might be considered for a patient.

One other idea. Try not to shoot insulin in public restrooms. It's just not very sanitary.

Good luck,

Maurie

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Permalink Reply by Melissa Long on November 27, 2011 at 3:56pm

its rediculous isnt it? doubt i'll ever get one tbh :(
i only go in the toilets if im out clubbing cause if i dont do it in the toilets it'll be too dark to see what im doing and someone is likely to knock me and that will seriously hurt :/ but generally i dont do my shots in the toilets xD 
thankyou for the advice :) 

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Permalink Reply by acidrock23 on November 27, 2011 at 4:08pm

I always just shot up where we were hanging around in bars, barstools, on the floor, in booths, as well as in line for roller coasters when I was blasted out of my gourd, back during my wilder days. I was rather wild though. I agree the pump is ideal for that sort of lifestyle, as well as any other ones I can think of. I'm not sure thhe NHS would overlook their seemingly idiotic guidelines so you can enjoy that sort of fun though? Frequent lows isn't a bad angle to work as it's possible to do that in a sort of controlled environment- "oh look, 40 mg/dl, I'd better have some ice cream..."- If you are careful.

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Permalink Reply by christy on November 27, 2011 at 4:11pm

Sometimes you have to take matters into your own hand. Make it work for you. Just be careful!!!

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Permalink Reply by breaddrink on November 27, 2011 at 5:00pm

The magical term for every justification. Ive needed has been random night lows. I wouldnt approach a gp with reasoning like " I want to go clubbing".
You need a sympathetic gp, and I didn't have to justify this while in the uk so it's difficult to answer.
Have you asked your gp yet?


Perhaps you could contact a pump company who has a big presence in tbe UK and ask what they would recommend?
My gp had me on colour code test strips up until the late 90's in the uk. Us type ones are a huge drain to their budgets.

One other thing...if you somehow purchased one privately, perhaps that would extend some kind of hand of friendship to meet half way to getting the supplies covered?

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Permalink Reply by acidrock23 on November 27, 2011 at 5:07pm

Pump companies can be *very* helpful as they are used to dealing with stupid, bureaucratic objections and get lots of $$$ (sorry, I dunno how to get the pound thing on my laptop, although I can do it on my phone...) to get around them. That's a great suggestion!

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Permalink Reply by christy on November 27, 2011 at 7:04pm

Yes I went directly through Medtronic to get mine. My endo was encouraging of me going on the pump, but a 15 min checkup is never enough time to discuss issues. And after the 1st of the year my yearly deductible would start back over, plus Im switching insurance after the first of the year so I really wanted to get on this now. Medtronic was wonderful, got all the info from my doctors office, talked to my insurance from start to finish it was 3 days and they got approval and was shipping my pump.

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Permalink Reply by Typeoneforlife on November 27, 2011 at 7:43pm

All i can say to you is bee sure you want a pump. I as well give 5-6 shots a day. I tried a pump when i was your age and did not like it at all. Some people love the pump some hate it. i use a CGM to continuously check my sugar while using shots. I have never had high sugar levels, but like most people in control of their sugars I experienced the everynow and then low sugar. I love the CGM because I can see how my sugar behaves and allows me to adjust how I do injections. It also alows me the opportunity to not use it when I dont feel comfortable.

i reccomend it but I have never been able to get into the pump. Others might disagree but its a cheap try.

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Permalink Reply by Brian Wittman on November 27, 2011 at 8:52pm

I felt the same way before I got my pump. While I was actively trying to manage my diabetes, nothing seemed to work. The seven shots each day were a drag and finding a place to test and shoot was difficult. Beyond that, my black box was always questioned, people would snoop and find insulin, pens, needles, syringes etc in it and I always got questions.

I pump has been a godsend to me. My A1-c is way down. I feel better. My eating habits have changed for the better. I use less insulin.

Do whatever your insurance wants to complete the paperwork for the pump assessment. It will be well worth you effort, to see if you will qualify. My guess is that you will love a pump.

Be well.

Brian Wittman

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Permalink Reply by breaddrink on November 27, 2011 at 9:34pm

Melissa, also...I happened to notice that this person (I don't know them so I hope they won't mind) lives in London and mentions in one of her videos how she got her pump on the NHS.

http://www.tudiabetes.org/profile/Alissa

Seems like she could be a lot of help.

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Permalink Reply by Buckley83 on November 28, 2011 at 12:58am

Hi there,

Pumps can be quite easy to get on the NHS, you just have to play by the rules.

First off you don't need a HbA1c of 8.5, you can get one if you are having hypos regularly and if your diabetes is causing you anxiety and concern, both are usually easily evidenced for type 1s.

You will need to have a good relationship with your primary care team, typically you will have to have completed a DAFNE or carb counting course and prove that you are knowledgeable about everything that is involved.

My advice, get pumping insulin by John Walsh, request to go on an education course at your hosptial.

Bournemouth Hosptial do an online course with the same content if you don't have one in your area..

http://www.bdec-e-learning.com/

Complete the course and if you don't have one already start building a good relationship of trust with your specialist.

I got one very easily by doing the above, I made sure I knew my rights and that I ticked all the boxes, then they couldn't say no.

You will have to sign a pumpers agreement, e.g. you must see a 0.5% reduction in HbA1c or an improvement in your condition or they will withdraw funding, you also need to attend clinics regularly and be proactive.

In my experience it is well worth it, but you have to play the game, the pumps themselves got 2.5k, the consumables another 2k a year and we get all this for free! We are very lucky.

The only issue you will face is if you do not have a pump clinic near you, it can be a postcode lottery. Under NHS you have the choice of hosptials to be seen by, so you may have to request a new team that supports and is familar with pump therapy.

The whole process may take 12 months, so get cracking!

Start keeping very detailed records if you aren't all ready, then request an appointment and go..

1) I have been on a carb counting course.
2) I meet NICE guidelines, this is why I want a pump, this is what I feel the benefits will be, I am willing to sign a pumpers agreement etc etc...

Good luck! PM if you want advice for clinic locations etc.

C

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Permalink Reply by Buckley83 on November 28, 2011 at 1:07am

I would caution you against thinking that a pump will be a panacea that will fix your diabetes for you though..

Essentially it is just a simple piece of technology that is another way of getting insulin into your body, it doesn't do everything it for you and it requires as much if not more effort and focus than MDI. There are the risks of pump failure, occlusions, site scarring and increased risk of DKA etc etc to be considered as well. It is not for everybody and quite a few people return their pumps as they don't get on with them.

Personally I love the fact I can bolus via a remote when I am sat in a meeting at work and people think I am checking my phone. You can be just as successful on MDI than you can on a pump, it comes down to you as an individual, as long as you really want it and have the right knowledge and attitude it will probably the best thing you ever did with regard to your diabetes. Was for me! :)

I love the fact I no longer have to inject 7 times a day, I love ability to fine tune basals and give multiwave boluses etc, for me the benefits far outweigh the costs.

Also I have alot of information about all the pumps available on the NHS and have seen and trialled them all, so that me know when it comes to decision making time about your pump!

Also being proactive and forceful is necessary with the NHS, this is a NHS core standard and they have a legal obligation to provide you with a pump if you meet the criteria, don't take no for an answer and follow up..

I emailed and rang my team every week until I got a pump, it may have annoyed them but I started after a pump in September and got one in October! Whilst someone I know from a support group who was not as focused waited 14 months!

Here is an overview of the typical process in an NHS setting..

https://www.walsallhealthcare.nhs.uk/media/73069/insulin%20pump%20p...

The NICE guidelines which guide the process..

http://www.nice.org.uk/nicemedia/live/12014/41303/41303.pdf

C

Best Wishes.

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