How do I qualify for a pump?

[icarusman]

First of all, hello! This is my first post here. I'm hoping that someone can offer me some insight into successfully getting a insulin pump on the NHS.

I have been injecting insulin, and generally ignoring my diabetes for 18 years now. In the past year I have attended a course in carbohydrate counting, and insulin ratios. In this past year I have become extremely motivated to take control of my diabetes, and I want to do all that I can possibly do to get the best control. I have been taking multiple daily injections and am still struggling to get the kind of results that I was hoping for. My HBA1c has improved, and now stands at 7.9.

Since speaking to a couple of people using pumps, and hearing what a positive experience they have had I felt that this must be the next logical step for me. In the past week I have just got an appointment to see the consultant who deals with pump therapy, which finally leads me to my query!

I was hoping to get some advice on what I need to prove to meet the NICE guidelines. Now that my HBA1c is below 8.5, I won't qualify on that part. The only other qualifying factor is suffering from 'disabling hypos'. I'm not entirely sure what this means. I don't suffering from blackouts, and get a reasonable warning of hypos. On the other hand, I take quite a few sick days off work because I'm worried about recurring hypos. I also spend too much of my time worrying about my diabetes, and the fact that my control still isn't good enough. I guess my main concern is that I won't be able to convince the consultant that I deserve an insulin pump. Can anyone shed any light on how this process works?

Sorry for the long winded post. I've had so much on my mind, and no-one to really discuss it with. Any help or advice would be greatly appreciated.

 

[jopar]

Hi Icarusman

Firstly welcome to the forum

Sadly insulin pumps are a it of a post code lottery with some area having a different notion and interpretation to what the NICE guidelines mean… Some areas are easier than others…

But with what you say in your post, your two main area’s are surrounding hypos and the quality of life issues…

Hypo’s well these are debilitating indeed, as not only do you need 3rd party intervention to help you (third party intervention is if some-one had to prompt you, or even hand or open the jelly baby bag for you) when telling this to the consultant just say 3rd party interventions and don’t expand on the details… But these time outs with hypos are having a impact on your life, both short and long term..

Quality of Life, this a bit easier has in the main it is you who determines your quality of life and what impacts on it..

So hypos take time out of your day to recover…
The fear of suffering another hypo is ruining your quality of life
You are scared of the impact that your control will have in the future

You need to research insulin pumps, so that you can build a case of understanding where you can say to the consultant, that if I had a pump I could have done this with it and avoided yet another hypo etc… This will show that you have understanding what is happening with in your normal control with MDI, and along side how the pump works and what it can do to help control…

If you would like more information on how to build your case for why a pump is a good idea, either ask on here or if you can always PM me…

 

[Stuboy]

"disabling" hypo's are any hypo's where you needed help some someone else, OR where the hypo caused you to stop what you were doing to treat/recover. It does not mean blacking out from a hypo... although that is disabling too.

As Jo said... research the pumps and find out what they can do to build a good case.

If you have many hypo's... you should have many delays in getting a pump. esp. if you've already been on a carb counting course!

At my PCT (im in the process of applying for a pump, being fitted on the 9th March) they want you to have 3 goals for the pump to acheive, so you need really good detailed data on your BG and hypo's so they can do a comparison from how everything is now, to how things are later on when the pump trial finishes.

My goals were to reduce erratic BG (because it causes horrible mood swings), reduce hypo's (up to 9 a week!), and to reduce my HbA1c frmo 7.9%.

Data is your friend! Not only to prove that you're control is not good enough on MDI, but for data comparisons for before and after as well.

Unfortunatly it can be a bit of a post code lottery as to how easy youre life will be applying. But your first step is to be refered for a pump by your GP or Diabetes Nurse.


Good luck!

 

[icarusman]

Thanks to you both for your replies. I already feel much better informed!

From what I have heard from the nurses at my clinic, the pump consultant is a bit of a stickler for people meeting the criteria. From all the info you have provided I think I should be able to make a decent case. I have been testing regularly and frequently (maybe too much!) for a long time now, so I think I can put together a good picture of the issues around my control.

I could definitely stand to do some more research into the benefits of using a pump. From what I have learned so far, I believe that a pump will allow me to better deal with irregular sugars and remove the risk of stacking injections. Hopefully I could better cope with my irregular working days. No two days are the same for me, which has been a constant problem.

Stu: I like the idea of having some clear goals. I think mine would be much the same as yours. I too have an ever changing BG, often in double figures even with regular monitoring and correction. I am also having too many hypos, and I can match your 7.9%! I hope all goes well for you on the 9th.

Jopar: I would really appreciate some further advice on putting my case together, so I'll PM you soon if that's OK.

It's really good to hear from some fellow diabetics. Although I have friends and family to support me, I have often feel quite alone when dealing with this condition. I'm glad that I have found this place. Thanks again.

 

[Stuboy]

Excellent. Feel free to ask any questions you have, that's what we're here for!

There's something about support from other diabetics isn't there!? Just can't beat it! I found meeting people on the course i just finished was a real eye opener to how others deal with the day to day diabetes management.

Good luck with your pump application... keep us updated!

 

[icarusman]

You're dead right. Attending the course, and just being able to share experiences with people in the same boat was amazing. I kind of miss having regular contact with other diabetics. I imagine this forum will help a lot, as you guys have already!

P.S. Do you know which pump you will be getting when you start next month? I'm already stuck on the Animas 2020, and I don't even know if I'll get one.

 

[Stuboy]

Fortunatly for me, my PCT will order in ANY pump you want, providing it's available in the UK. So my choice of the Animas 2020 isn't a problem. But my preference of the Animas 2020 PING isn't available in the UK so i can't have it.

For the pump trial (first 6 months), you get what ever they have in the cupboard, then at the end of the trial... luckily for me they have 2020's in the cupboard for the trial! If you continue with the pump then they order you your own one. So ill get my own Animas 2020 in the colour i want at the end of the 6months.

Might work differently at your PCT. I think im one of the lucky ones... Jo for example could only have the Accu-chek spirit because that's the only one her PCT deals with.

The Animas 2020 is a nice peice of kit, the ping looks awesome, hopefully that'll be available when i come to replace the pump in a few years time. (if i continue pumping after the trial, that is)

What pump's have you looked at? The NICE guidelines tell you which pumps are available in the UK.

 

[icarusman]

I completely agree with you on the Ping. It makes much more sense having the pump and meter working together. I doubt the UK will be getting it any time soon. We are so far behind the rest of the developed world when it comes to pump therapy.

I have looked at each of the available pumps, and the Animas just seems as much better package. It makes the other pumps look dated. I must admit that I am a bit of a geek, so the colour display and advanced options the 2020 offer make it an easy decision for me.

At an evening meeting at my clinic I got a chance to have a fiddle with both the Animas 2020 and the Accu-Chek Spirit. There really was no contest. The Animas was clear and straight forward to navigate where as the Accu-Chek just seemed a bit clumsy to me.

I wasn't even aware of a 6 month trial before you mentioned it. I'll have to check out how my clinic does things. I look forward to hearing how you get along once you get connected.

 

[Slinger]

Sadly insulin pumps are a it of a post code lottery with some area having a different notion and interpretation to what the NICE guidelines mean… Some areas are easier than others…

this is not the case anymore. there are requirements that have to be meet. one of them is to have disabling hypos. another way is the way i got it which is to suffer for neouropathy (which is so painful i now use a wheelchair to get around outside). either way your blood sugars have to be more or less under control.

you have to carb count and pump therapy is not for everyone.

the genaral cost of the pump is around £2000 and over the 6 years (the life of the pump) it amounts to around £6000 for all the stuff needed and the support needed

hope this clears things up a little bit

 

[Stuboy]

i agree the colour screen tipped the scales for me when deciding between the deltec cozmo and the animas 2020. That and the deltec i think looks more like a *toy* than a piece of equipment. The nurses at my clinic agreed!

Im also a bit of a geek, i like gadets and technology so the animas was a no brainer for me. I've only been able to play with it online so far on the US site. But i've read the manual for it front to back twice already so i dont think operating it will be a hassle.... like you say, it's really easy.

let us know how you get on with asking for the pump!

6 days to go...

 

[lindap]

Stuboy

Waiting to hear how you are
getting on with pump? It would be really good to hear from a real person!!

 

[Stuboy]

i'll let you know what my first thoughts are later today!

6 hours to go!! (i'll open a new thread)

 

[icarusman]

Good luck!