Requesting a pump?

[SherwoodT1]

Hi all. I've been T1 for over a year now, and wondered how those of us who do not qualify for a pump via the NICE guidelines can go about requesting to be considered for funding? How did people approach this subject with their dsn etc.? I feel a little guilty to be asking knowing there are many other people likely more in need of the tech. Thanks in advance!

 

[Rokaab]

I know I initially asked my DN at my doctors (she's awesome and I get on very well with her) and she wrote to the hospital who then reinstated me in the hospital clinic (they'd previously dumped me for a reason I cant remember) and then I got to ask the endo, who promptly said 'no, I can see it'd help but there are more worthy people' - ok he didn't quite say that but thats how I heard it

Anyways I kept asking and asking every time I went and eventually I did get approved - admittedly mostly due to the fact that 'Mr Meanie' (ok thats what I called him behind his back) retired and a new consultant came in and promptly approved me when I saw him for the first time - my reasoning was mostly to do with dawn phenomenon

 

[Juicyj]

Hello @SherwoodT1

It generally starts with an excellent relationship with your DSN - regardless of NICE guidelines, they are just a guide, however some points to bear in mind include are you still in honeymoon, have you done DAFNE, how do you manage day to day, does your T1d affect your quality of life/impact your lifestyle. It's giving you the ability to be in better control with your t1d that counts, so please do not compare yourself to others or feel guilty. Speak to your DSN though as you will need to register your interest and speak to them about accessing one through your hospital.

 

[SherwoodT1]

Hi @Rokaab and @Juicyj. Thanks for replying.

Oddly, I've the opposite experience. My dsns at the hospital have been amazing, very supportive and have a more open view to pump eligibility. My local GP on the other hand, in essence, said I've no chance at all. I won't lie, their reasoning left me feeling daft for asking about pumps and a tad guilty - she compared me with another patient of theirs. It certainly wasn't a positive experience. I think that's the crux of my hesitance to ask about pumps now, that brief experience felt rather belittling.

I've noticed my control has deteriorated, and my insulin needs have increased so I think while I'm not completely beta cell free, I feel like I'm slowly boarding the proverbial flight home after the honeymoon, so to speak.

The main thing I've struggled with is managing my bloods at work. The nature of my job means I can't effectively pre-bolus for lunch, and my eating times can drastically differ from day to day. I also seem to have a problem with dawn phenomenon or mornings in general, which I've tried to address by changing carb ratios for the morning, but half unit increments either send me into chugging food to prevent a low at work, or being sky high for no rhyme or reason. I'm still on the waiting list for the Dafne equivalent course offered in my area,but fingers crossed this will come around sooner than later!

Thanks so much for the help both.

 

[Juicyj]

My local GP on the other hand, in essence, said I've no chance at all. I won't lie, their reasoning left me feeling daft for asking about pumps and a tad guilty - she compared me with another patient of theirs. It certainly wasn't a positive experience. I think that's the crux of my hesitance to ask about pumps now, that brief experience felt rather belittling.

Greatest respect to your GP - they are not a diabetes specialist so would take anything they say with a pinch of salt, also they are not involved in the funding process for pump access, your local hospital manages pump funding for patients, speak to your DSN and focus on working with them, your GP doesn't need to know. Sadly my experience of GP's isn't great either dismissive comments and lack of knowledge. DSN's on the other hand are invaluable and under great pressure to manage their workloads but keen to help and give you the best chance possible.

It sounds like this is having a major impact on your 'quality of life at work' so this should be your focus when speaking to your DSN.

Good luck.

 

[Deleted member 527103]

In addition to the comments above, I would also emphasise how important it is to master MDI before moving to a pump.
I would suggest there at east two reason for this
- with a pump you have no "spare" background insulin. Therefore, you ahve to be much more accurate with your carb counting.
- pumps can fail. This does not happen very often but it is never at a convenient time. Therefore, you need to be confident that you can quickly revert to MDI under stress if it happens

With a year of MDI experience, your DSN may not be willing to take the risk with regards pumps at the moment. It is not a reason to avoid the conversation but something to bear in mind.

I would also familiarise yourself with the benefits of pumping and be able to "sell" why it would help your diabetes management if you can adjust your basal every 30 minutes or dose 0.05 units.

And remember, pumps require time and brain investment. When I started pumping, working out my basal pattern, learning about combo boluses and suspended or temp basal was like learning about diabetes management all over again. And if you don't intend to use these features, you are missing out a huge amount on the value of a pump.

It is not my intention to put you off. I am so much happier with my pump. It really helps me keep a much closer management of my diabetes and has significantly reduced my hypos.

 

[Rokaab]

- pumps can fail. This does not happen very often but it is never at a convenient time. Therefore, you need to be confident that you can quickly revert to MDI under stress if it happens

And yes this can happen, it actually happened to me last Friday evening (just before 6pm) - and I had to revert back to pens til the new pump turned up (though in this case Medtronics response time for getting me a new one was excellent - especially since the cloest one they could send was 400 miles away)