[Gary_W]

... which is the first stage locally in getting hold of a pump. It involved going along to the clinic and sitting in on patient appointments so you could ask them questions as to how they felt about pumping.

It was very useful, and the first time I'd met this particular diabetes specialist nurse. Very nice lady, and the first person I've met there who actually understood basal rates. It's the first time I've ever come away from there not feeling frustrated by the advice given as I felt she knew exactly what she was talking about.

I'm not 100% sure of the next stage here (she was backed up with patients when I left so me taking time to finalise details didn't seem reasonable) but what is going to happen now is I need to see a consultant who will decide whether or not I can have one on trial. You are supposed to attend the Daphne course here prior to getting one, but we're still discussing that; when I was assessed for the course a few months ago it was decided that my level of knowledge exceeded that taught on the course, so my attendance would be a waste of my time and their money.

If the consultant says 'yes', I will get a loan pump to see how it goes. They lend you one for 2-3 months. If that goes according to plan and everyone is happy, you get a pump (or that was my impression, but keep in mind there may be other hoops to jump through as yet undisclosed). They seem to use the Medtronic 522 at the moment, though she hinted that a choice between 3 may be possible. The loan cannot happen for at least 6 weeks from the time I see the consultant, and I have no idea when I get to see him; that's the bit that couldn't be finalised today. As I have no faith in my current consultant I'm only too happy to change to this new guy.

I really hope this goes thorough as after a year of excellent control I'm really struggling with a couple of things that would come right if I had a pump. I have no idea whether pumping is a good solution for me or not from a practical point of view, and I applaud the concept of a loan pump first; it would be a real shame to throw funding at me if it didn't suit. I'll keep you all posted and will of course ask questions should I get the nod here

Gary

[palefacegirl03]

sounds like a pretty good session for you.
Hope it all works out the way you need it to.

[Jan B]

Gary,

From my point of view, in reading your posts lately, it's exactly what you need. I couldn't be much happier about pumping. I hope you can get expedited service of some sort. You deserve it.

[Gordonm]

That is great Ihope it all works out for you.

One thing I never understand is how it is someone elses decision for you to get a pump. I don't get it. It is your life and your health. They have no idea what it is like and if you decide to get one it is up to you not hteir decision. This whole subject gets to me. I understand the insurance companies not wanting to spend the money then have it not work out but come on. If I wnat something I'll go get it. I'll do all the research and learn about it before jumping into a big decision like this but who is to tell me I cannot have one.

I told my Dr. I wanted a pump and he wrote all tha twas needed and in 1 month I was on the pump. He did not have much say in it. I was going to do it with him or without. He was a lousy Dr. anyway and I have changed to a much better one. This one understands the pump much better.

Rant over.

[Gary_W]

Originally Posted by Jan B

Gary,

From my point of view, in reading your posts lately, it's exactly what you need. I couldn't be much happier about pumping. I hope you can get expedited service of some sort. You deserve it.

Very sweet of you, Jan I keep telling my wife I deserve a new amp for the living room so perhaps you can tell her I deserve that on my behalf too Not sure about the quick service, but to be fair a trial in the Spring would suit me well. I need a calmer time, ideally, to throw some hours at setup etc. Let's hope their timescales fit mine.

Palefacegirl - Me too. It was quite refreshing to go in there and come out feeling good.

Gordonm - Anyone can get a pump in the UK if they self-fund. Private medical insurance does not cover pumps over here. I have private medical insurance through work, so I'm painfully aware of this. If you want to get one funded, it has to be funded through the National Health Service.

The NHS has guidelines on giving out pumps. If the guidelines are followed to the letter of the law, most type ones would have a hard job qualifying. For this reason, it is potentially really easy to get turned down for a pump. All you can hope for is that your local doctor / clinic and funding authority interpret the guidelines rather more loosely. One of the guidelines is that if you can get your HBA1c <8.5 with MDI (and have had decent education and have tried all the insulins out there) then you don't qualify for a pump. If you know what you are doing and work at it, most people can get below 8.5 on MDI so most people don't qualify. On these grounds, my <6 HBA1c would make me an instant loser in this lottery. It did not come up as an issue today, so I guess in terms of pumping my clinic is looking like one of the more progressive places at the moment. Some of my fellow Brits will not be so lucky.

I'm not counting my chickens here, but not being given an instant 'no way' was a pretty good first meeting in my books as I was expecting to have to come out swinging from the start. Once I explained about my varying basal needs, she was interested. I got the impression that she sees very few patients that even understand the term 'basal rate', let alone realise that it varies. She could see that I am comitted to getting on with life as best I can with this condition and that she may be able to help with that. Let's hope she can.

Gary

[shabbie]

good work gary

fingers are crossed for ya

[Gordonm]

Hopefully you get one. It has made life a lot simpler for me with the pump. I guess the rules are different wherever you are about getting a pump. I just have heard even here to many stories about Drs. saying you cannot or they will not write a script for a pump. It just does not make sense if you want better control and the latest techniques for controlling diabetes that you can be denied by a Dr.

[Gary_W]

Well the first hurdle turned up in the post this morning....

It was agreed the other day that I need to see the consultant to get the ball rolling. After I see him, it will be 6-8 weeks before I can trial a pump. If that goes well, I can potentially get one (provided the wind is blowing the right way etc.).

The nurse tried to make me an appointment on the day I was there but didn't manage. I had an appointment letter turn up this morning, and according to this I don't get to see the consultant until 25th July

If that really is the case, I won't get to trial one until the end of September and I will be starting the pump in the Autumn / Winter. My job is really silly busy from September through until the end of March, then tends to lighten up a bit over the summer months. For this reason, I pointed out that it would be great to trial the pump from April onwards, as I'll be able to easily attend training sessions etc and won't have the additional BG problem of being stressed to death.

I've just written the nurse an email and I hope she can pull some strings; it seems nuts that I have to wait 5 months for a 10 min appointment to then say 'yes you can trial one' when the nurse is the one that actually does all the pump startup... And, to be honest, I am not feeling 100% due to all of the faffing around with night hypos vs day highs due to me not getting the Lantus right. I was hoping to not have to work around that for too much longer before having the trial.

It's a really great letter to spoil your Saturday

[pegasus]

Alert! Long post following (but I think there are some generally useful alerts

After 40 years, I've just switched to a pump, and it's been a major psyche/emotional challenge. Added to the following complications with the process:
I received my MM 522 in October. My dr had recommended an educator, so I called; she was out of town, due back in 2 weeks; left msg. She called and didn't have a free day for a month. I was willing to wait because it was trust by extension for such a major life change.
First alert: She also had received a new contract from MM (has anyone else heard about this?) that she hadn't yet reviewed but might limit hours. Her protocol seemed smart: a 3-hr review/training session (after reviewing the book, the DVD, the online pump school); saline practice for a week; 2-hr session to switch to insulin; followup monitoring of bgs to tinker w/basic settings. So a month later (right before holidays, and in midwinter, w/heavy outer winter clothes) I have my first training. I find out she's only scheduled me for *2* hours because of this new contract; MM has created a limit, though some kind of waiver might be available. (Since I too have a schedule, it would've been nice to have notice, no?) But I assume the hour will be made up since that is what I was first told. At the end, w/another client waiting outside, she tells me no, she got 3 hrs in 2 (some physicists may want to chat with her!).
Quite upset afterward, a lot of info just disappeared from my usually retentive brain. I realized after a couple of days that I needed more than the week. Of course that ran into the holidays, and then into her busy schedule. And the fact that I didn't have enough saline (got some, but that's an unnecessary tangent here). She wasn't happy, but I stood my ground and rescheduled for mid-Jan.
I had some panic attacks w/ insertion--seeing bubbles? bad instruction/drawing in the User Guide--but got a couple of decently helpful (one extraordinary!) people on 24-hr MM line.
: 2nd general alert: I'm told by my doc that the quality of MM tech support has gone down. He's beginning to use another pump because of it. Any feedback about this would be useful
Trainer worked w/me after 2nd session for a couple of weeks (there were several other scheduling probs--her surgery, going out of town--this really seemed ill fated!), but she was restricted by MM's reimbursement to 1 hour. And she clearly wasn't willing to attempt the waiver even if I'd wanted one, so I didn't pursue it.
So, while I have access to the MM nurse and my dr., for now I'm struggling along trying to finetune this thing. I had reached the limit of my finetuning with the 0.5 unit syringe, so this seemed the logical next step.
But t'ain't been easy, and I'm glad to have found this place; cliche as it seems, it's nice to find others asking similar questions.

[Subby]

Oh Gary, that's annoying and stressful for you. I hope you have results in getting a sooner apptment. In that kind of situation I am very lucky that my mother will call about getting a sooner appontment times... somehow she can just get the receptionist to open up and slot me in the next day. I don't know how she does it. She just does. So if you have no luck yourself, maybe you know someone you can enlist to butter up or work on the person making the appointments, likely the specialist's receptionist I guess.

If the wait is longer than you are hoping for anyway, as it was for me while I waited the 4 - 5 months for the hideously slow wheels to turn for me... well, not to stress about it. (Obvious I know, but that might mean just not overly thinking about pumps for the time being). I stopped thinking about the pump, stopped researching it, because it is just not a reality and you cannot delve into it fully and effectively until you actually have it. But I just said to myself "soon.. soon...." and after a while... the time was there.

For me during that time it was "one more round" of trying to make MDI work. Very half hearted, but I found it was my only option, I couldn't tread water completely. It sounds like you WILL get the pump and get to try it properly, enjoy that thought despite the frustration. You will get there!

(BTW, 8.5 A1c? That is such an incredibly draconian and innapropriate measure.... thank god you've bypassed it somehow)

[Subby]

Forgot to say, in some ways, you've had a more positive experience than me. With my meeting with the "pump doctor" we discussed all the trials and tribulations of MDI, the amounts of tests I take, what diabetic control is about, etc etc. Then he asked me why I wanted a pump. I said "I hope it lets me control my blood sugars better, it seems like it should". He looked at me and said "ummmm.... you are not being realistic" and started packing up his things as if terminating the interview there and then - effectively terminating my application.

WTF? I got angry, and thank god found my voice there and then rather than being stunned and shunted out the door. I told him how much time and effort I had put into MDI, how I was prepared to put work in, and asked why the **** we were there if it DIDN'T offer the chance of better control.

He ummed and ahhhed and told the rest of my team how I would probably change my mind and find it too intimidating when I learned more. I could only stand by and shrug in bemusement at this terrible attitude. He was in a unique situation of power, in that he could terminate my application for a pump or at least hold it up substantially while I found another "pump doctor". He enjoyed the power it gives him and abused it, under the slimy guise of "testing" me, I suspect he tells others. F'ing sadistic *******.

Anyway such is life, I got past dealing with the dodgy doctor and got the pump anyway I should find another pump specialist. Talking about this reminds me I don't want to deal with that guy again.

[Gary_W]

Hi Subby,

Thanks for the reply. I'm just hoping that the 5 months thing is a misunderstanding or an admin foul-up. It's just that, during the 3 or so hours I was at the clinic, it was kind of understood that April / May would be good for the trial. She told me that the loan pumps were all out until April, I made it quite plain that an April / May trial would be perfect. At no point did she say 'not going to happen, as you cannot see the consultant for 5 months'. She knows the kind of schedule he has. On top of that, the 5 months actually breaks the waiting list target at this particular hospital. I sell medical equipment to many places, including my local hospital (totally unrelated field to diabetes) and get to know such things so the appointment form they've just sent out breaks their own rules....

As for getting my mum to call them.... I do that kind of thing for her these days. I'm of the age now where the rolls have reversed somewhat I will certainly try to get around this by any means possible. If I cannot, then I calm down and I wait. I can see why certain things have time and tend to be a fairly patient sort; I just don't cope well with beurocracy. If there is a good reason for the delay then fair enough. If it is just good old fashioned inabilaty to organise drinking to excess in a brewery then I won't be so happy.

Sounds like you had lots of fun with your doctor. I may end up having similar conversations with mine. I'll let you know in 5 months

Gary

[Gary_W]

Just got a reply from the nurse via email. The 5 month wait before I can even see the doctor is correct. I'm trying to get round this any way possible, so wish me luck. At this rate, I won't get a trial until the end of the year

[Subby]

Argghhh.... poo. What to do?

I am thinking that emails are easy to not get involved with, not personal enough to make people make an effort. Can some face to face and gentle pushing happen? I hear you about your mum not being a candidate as appointment maker, but I was thinking it could be any person in your life that may call and get in their face a bit more... some people just know the exact tone and approach to get other people moving their butts and making exceptions. You might see it often in shopping malls, the ones who argue down prices outrageously with the shop assistant but manage to be sweet and lovely or at least acceptable, at the same time

Whatever way you tackle it, absolute best of luck!

[Jenniferpark005]

Gary,

I feel you pain, I am at 1yr 4 months and counting, when I get my pump at the start of May I will have waited 1yr 6months.

That doesn't include the time I had to wait for my 1 appointment at the clinic per year before I could bring the pump up with one of the docs.

I have said in another post that INPUT in the uk was very helpful for me when they said I had to get a minimed or a Spirit ; I wanted a 2020. They help anyone in the UK with advice about applying for a pump.

At my clinic we don't get a trial, just straight in, I think the companies give them a 1 month return. I contacted Animas myself and asked for a trial, they gave me one and I got some saline from my clinic and hooked myself up for a week. It wasn't as strange as I though it would be and I'm really looking to starting for real now.

Good luck getting through the NICE guidelines, its the nurses you need to convince really, they recommend to the Docs who put you forward for funding.

Jen