On the waiting list.

[saruhbeau]

After spending months trying to get my diabetes team on my side to get an insulin pump, I had a good appointment with my dsn who, after talking with the consultants agreed to put me on the waiting list for a pump!

So now I am just waiting. I am very grateful that I have their support now, but my dsn said she can't give me any timescale. The wait is driving me mad!

I wondered what others experience was once they were accepted onto a waiting list. My trust doesn't require a DAFNE course but I believe there is some kind of training with other patients waiting for a pump. I am telling myself it could be up to a year but hoping it will be quicker than that... I have had a rough month with gastroparesis, and have been admitted to hospital twice in the last month due to dehydration. I am hoping a pump will make it easier to control my diabetes when my gastroparesis gets bad.

Please share your experiences of pre pump training etc? And after starting the pump how long did it take to get the settings right and your head around it all?

 

[Raybis]

After spending months trying to get my diabetes team on my side to get an insulin pump, I had a good appointment with my dsn who, after talking with the consultants agreed to put me on the waiting list for a pump!

So now I am just waiting. I am very grateful that I have their support now, but my dsn said she can't give me any timescale. The wait is driving me mad!

I wondered what others experience was once they were accepted onto a waiting list. My trust doesn't require a DAFNE course but I believe there is some kind of training with other patients waiting for a pump. I am telling myself it could be up to a year but hoping it will be quicker than that... I have had a rough month with gastroparesis, and have been admitted to hospital twice in the last month due to dehydration. I am hoping a pump will make it easier to control my diabetes when my gastroparesis gets bad.

Please share your experiences of pre pump training etc? And after starting the pump how long did it take to get the settings right and your head around it all?

It's a pain waiting I know been pumping for 8 and half years but had to jump through hoops to get there multiple injection trials,if I could not get my hba1c below 8.5 then you succeeded or if you had other problems like multiple hypos. Or problems like injecting etc your get there it probably took me about 9 months good luck from Ray

 

[Snapsy]

Yay @saruhbeau !

Since I started asking my DSN about pump potential in the April my consultant agreed to apply to the CG for funding in the July. I heard in the August they'd agreed it, and I started pumping in mid October.

I went to the diabetes centre for a couple of hours at the beginning of October for a training session (with other pump starters, two DSNs and the pump manufacturer's rep), took my pump home to familiarise myself with it and read the manuals, then went back two weeks later to start pumping!

In the first session we all worked out our starting basal rates and bolus and correction ratios. Second session we programmed these in, and were right away on insulin!

It took me two weeks after that to actually get to grips with anything to do with the pump. I found it - in terms of confidence - really really hard initially. But by Christmas I was cooking with gas!

Unfortunately my starting basal rate (which was recommended as half my MDI total daily dose minus 30%) was way too low for me, and my blood sugar levels were in the teens for days on end. Once I'd spent several days basal rate testing, several times in fact, and making adjustments one at a time I saw a light at the end of the tunnel.

But all of that aside, my diabetes life is way way better now than it ever was on MDI. It took time and effort and support to get my pump working for me rather than against me, but omg it was so, so worth it.

 

[noblehead]

So now I am just waiting. I am very grateful that I have their support now, but my dsn said she can't give me any timescale. The wait is driving me mad!

In general the waiting time can be anything from 3 - 12 months.

I am hoping a pump will make it easier to control my diabetes when my gastroparesis gets bad.

It should help matters, I just forget where I read it now but pumps are recommended for people in the USA who have gastroparesis.

Please share your experiences of pre pump training etc? And after starting the pump how long did it take to get the settings right and your head around it all?

Had one session pre-pump, on the start-date went through all the settings with the pump rep and DSN. Often there's training days offered by the clinics where the pump reps attend, they are useful and you can go through with them any issues that you may have.

I read up on pumps quite a bit before starting on one so had a good idea about basal rates/settings and such, the book Pumping Insulin was a great help and came highly recommended by the pump users on this forum, if you've not purchased it yet then please do, it's a great book.

Got to grips with the pump after 2 weeks, by the end of the first week I'd adjusted some of the basal rates having been started on just the one, although pumps can seem very daunting at first it's surprising how quick you adapt to them. Good luck and keep the thread updated on your progress @saruhbeau

 

[himtoo]

agree with @Snapsy on setting rates -- my DSN set mine to start with at a very low comparative level and after 3 days on a pump I was ready to throw it in the bin.................... but .................... fast forward to that initial 4-6 week settling in period and I WOULD NEVER LOOK BACK,,,,, -- it is so precise compared to MDI -- I have rid myself of dawn phenomenon -- ok -- I still get hypos ..... but they are very mild in comparison -- and fewer of them too.

eating and post meal spikes are well controlled too

I don't have good news on your timescale wait -- hopefully you will be quicker than I was at 13 months !!!!

 

[Seacrow]

Wow, different pcts really are different. I finally gave in and agreed to try a pump, the consultant arranged a date when everybody could get together (me, my husband, a senior nurse and the consultant), which turned out to be three weeks later.

At that meeting we ran through doses, to begin with cutting the basal and bolus rates by 40%, I was shown how to fill the reservoir and adjust basal and bolus rates and how to stick the infusion set in and that was it. I walked out on the pump. Had to adjust the basal rate down on the first night, but otherwise it's working well.

 

[noblehead]

Wow, different pcts really are different. I finally gave in and agreed to try a pump, the consultant arranged a date when everybody could get together (me, my husband, a senior nurse and the consultant), which turned out to be three weeks later.

Wow that is fast @Seacrow

 

[MWilson]

I have been really lucky with my team who are fantastic. From my consultant saying a pump was the way forward to funding agreed and my 640G arriving took a total of 4 weeks. One down side is Medtronic currently do not have any stock of reservoirs so due to waiting them to come in and availability for a start appointment I do not go live until 22nd of August.

Sent from my SM-G955F using Diabetes.co.uk Forum mobile app

 

[Neil Cookson]

Hi.
I have had gastroparesis for the last 9-10years.
I am currently using a Medtronic 640g.
The pump will completely change your levels due to the delayed emptying.
I always use the wizard with a dual bolus so I can drop some Novorapid in straight away to deal with initial release and then depending on the food I'm having I would programme the rest of the bolus to be delivered over an hour or more depending on the food...high fibre, low residual and so on.
I had terrible sugar levels and my HBA1C was through the roof.
You won't believe the difference it makes in dealing with the delayed emptying once you get the pump.
Good luck and hopefully you'll have delivery very soon.

 

[donnellysdogs]

Back in 2010 I got my pump at wnd of 3 weeks but only had to wait that long due to nurse being on holiday. I was lucky as my hospital then had bulk purchased 30 pumps of a soecific brand and they thought ahead. No waiting at all for patients that needed one.
No dafne course either. Just had to document everthing prior to going straight in live on insulin. Some people were being made to try saline through pump back then.
The only topic of conversation on forum was about the colour of skin for it.. not the type of pump or its benefits etc...
hopefully it wont be that long for you.
Take time to read up on it.

You could phone the finance dept for pumps and ask how long the wait is??

 

[saruhbeau]

Double post!

 

[saruhbeau]

Thanks for the replies!!

From what I have read @Snapsy we are similar in that we both desperately wanted to go onto a pump, and had to persuade our team. My a1c isn't awful at 6.9%, but my standard deviation or basically fluctuations in bg is high. I am hoping now I have the ok from my dsn the wait won't be too long!!

@noblehead I just ordered pumping insulin - thanks for the recommendation! I feel like a complete newbie in terms of how to set up a pump and make adjustets. I would have no idea what my basal rate should be and I really want to learn as much as I can before I get my pump. I will keep this updated

Post meal spikes is one of the things I am hoping a pump will help with @himtoo. With my gastroparesis it is hard to predict the spike.

@Seacrow you are right every PCT is so different. It sounds like you have a very pro-pump hospital. Getting my team to agree was a real battle!

@NeilCookson thanks for the info, that sounds really encouraging. My a1c has come down from 10 to 6 9% thanks to dexcom. I have quite a few hypos though. The main problem I am having at the moment is I have to wait until I have finished eating before I bolus, because I often end up vomiting and then can't stomach replacing the carbs I have bolused for. That is leading to sometimes a large post meal spike. It depends on the food though and if my stomach is digesting the food. Sometimes I go hypo even if I wait til I've eaten to bolus, because the food is just sitting in my stomach. Its impossible to predict. With the pump I will be able to bolus for part of the food before eating and use an extended bolus if needed like you said.

@donnellysdogs wow that was quick. I don't think my hospital keeps the pumps on site. I have the choice of: vibe, 640g, insight, or combo. I think they order them in as needed. Would the financentre department be part of the hospital? My dsn hasn't applied for funding yet so I think I need to just keep asking her every so often so she doesn't forget!


One more question - I know the hospital offers: medtronic 640g, animas vibe, insight, and combo.

I am training to be a mental health nurse, and I feel that the omnipod would be a lot more practical. If I am on placement on a ward, it is inconvenient and potentially dangerous to have a pump on me in situations where I may have to control and restrain patients. It could also be damaged. Occupational health are likely not to allow me go do the duties required....

My dexcom is ok as it is stuck to me. My phone has to be kept in the office though, as it is loose. Like the dexcom the omnipod would be fine as it's attached.

If my CCG don't supply the omnipod is there anyway for me to request it for the reasons above? I actually prefer the look of the vibe or 640g, however career wise the omnipod is a much better option...but sods law my hospital don't offer it!

 

[Poosecat]

It's astounding how different trusts are with pump therapy. I had an initial appointment with nurse on Tuesday. I can be recommended straight away - doesn't have to be agreed by the trust board. Waiting time for pump clinic is currently 3 months. Apparently most people would be required to trial a basal insulin called tresiba first and then if no improvement in control could be moved onto pump. However, tresiba is not licensed for breast feeding so I would automatically skip that stage. The consensus from my team was 'let's get you settled on it before you go back to work after Maternity leave'. I was quite surprised!

 

[noblehead]

I would have no idea what my basal rate should be and I really want to learn as much as I can before I get my pump. I will keep this updated

Don't worry about that, the pump DSN will discuss with you your starting basal rate, after that (if your confident in doing so) you can adjust the rate yourself or the DSN will advise further. Once you get the book things will be much clearer about basal settings/programes/ rates.

 

[donnellysdogs]

The finance dept is in each hospital. The funding request form is nothing major for them to complete!
Same when it gets sent off the CCG's normally are complelled to make their decisions within 2 weeks. Even if it require to go to a panel for Individual funding requests (this doesnt apply for pumps) the panels meet every fortnight in most CCGs and decisions are quickly made.

Dont accept delays, do chase through with nurse. It could still be worthwhile just checking with finance dept as to what timelines the pymps are given from approval??

Xx