Best hospitals/trusts for access to pump?

[LADABoy]

Hi all,

Apologies if this breaks the rules (hopefully not!).

Unfortunately I’m in a bit of a medical desert. Despite being recommended by my consultant and being told I meet the criteria (with full support of the nurses!), I’m unable to gain access to a pump due to a lack of funding. I’ve spoken to the lovely folk at the JDRF who’ve told me it’s illegal for funding to be denied (I’ve been following their advice e.g writing to my local MP etc.).

The hospital say they are given a budget by the ICB as a department from which they can issue pumps which has run dry. The ICB have told me that the hospital needs to request a budget increase if “they feel it is insufficient”. Hospital says the ICB is aware as they’re in constant communication, however I was told that someone from the ICB visited a little while back and wasn’t aware of the situation. I’ve been going back and forth for months now, and I’m getting nowhere; all the while my control is getting worse and worse. I love the nurse team, and know they’re not to blame in this situation - hopefully my post doesn’t seem like I’m blaming them!

So with that said, can anyone recommend any hospitals/trusts that are relatively speedy with getting someone on a pump? I’m based in the east of England, but I’m happy to travel anywhere. I know beggars can’t be choosers, but an Ypsomed pump would be my preference so I can loop. I currently use a Dexcom G7, but I’m happy to switch to the G6/Libre 3 if that’s something that’s allowed.

TIA for reading, and for any info you’re able to provide!

 

[Inka]

Welcome @LADABoy 🙂 Do you get the G7 on prescription? Do you know why the consultant recommended you for a pump? Why is your control getting worse?

 

[LADABoy]

Welcome @LADABoy 🙂 Do you get the G7 on prescription? Do you know why the consultant recommended you for a pump? Why is your control getting worse?

Thank you kindly!

Fortunately I do get the G7 on prescription. Consultant recommended me for a variety of reasons: difficulty with hypo awareness, disabling hypos/anxiety surrounding hypos, dawn phenomena. I also have some other health concerns that are impacted by the diabetes and vice versa.

In regards to worsening control, I have a tendency to swing quite hard between insulin resistance and sensitivity. At the moment I’m on the resistant end of things, and have been for a couple of months now. I spike after eating, spike during the night. Paradoxically I’ll also have hypos during the night too. Honestly it’s a gamble a lot of the time as to which way it’ll go. I also struggle with hypos if I do physical activity (e.g cleaning my home, exercising) which leads to me not being able to do things I’d like to be able to do due to the unpredictable impact.

I started off on Novorapid and Abasaglar, but am now on Fiasp and Tresiba.

 

[helli]

Sorry, I can’t help with your question about getting a pump although I can appreciate your frustration.
However, I wonder if your problems are due to lack of understanding of your current regime.

Have you found the swings are more since you started on Fiasp and Tresiba?

Tresiba can be challenging if your needs vary day to day due to variations such as exercise and stress. I wonder if Levemir would be a better option for you. Although it means an extra jab each day, it gives you more flexibility as you can have different basal levels during the night and day and adjust your basal when you are more active rather than waiting 4 days for a change to take effect.

Regarding Fiasp, I have been using it for a few years and love it but it took some time to get used to. The key thing is that the speed at which it works depends upon my starting BG.
- If my BG is in the 4s, it will work instantly - quicker than it takes to digest my food. My insulin sensitivity appears to be high. So, I have to bolus after eating.
- if my BG is in double figures, Fiasp takes forever to start - easily over an hour. My insulin resistance becomes much higher. So, I have to bolus very early. Actually, I keep a close eye on my BG and take corrections if I see my BG heading that way.

You may think this is irrelevant if you get your promised pump. However, even with HCL (hybrid closed loop), you need to consider your pre-bolus dose and timing in the same way as MDI. Unfortunately, pumping does not make it much easier.
The main benefits of pumping are small doses, ability to adjust basal for different times of the day (helps with DP) and ability to suspend basal (e.g. to avoid hypos when exercising). Pumps do not help with hypo awareness.

My other thought is that you mentioned night time hypos. Are these confirmed with finger pricks or could they be compression lows - false lows when you lie on your sensor in your sleep and apply pressure?

Apologies if you are aware of all of this and I am teaching you to “suck eggs”.

 

[LADABoy]

Sorry, I can’t help with your question about getting a pump although I can appreciate your frustration.
However, I wonder if your problems are due to lack of understanding of your current regime.

Have you found the swings are more since you started on Fiasp and Tresiba?

Tresiba can be challenging if your needs vary day to day due to variations such as exercise and stress. I wonder if Levemir would be a better option for you. Although it means an extra jab each day, it gives you more flexibility as you can have different basal levels during the night and day and adjust your basal when you are more active rather than waiting 4 days for a change to take effect.

Regarding Fiasp, I have been using it for a few years and love it but it took some time to get used to. The key thing is that the speed at which it works depends upon my starting BG.
- If my BG is in the 4s, it will work instantly - quicker than it takes to digest my food. My insulin sensitivity appears to be high. So, I have to bolus after eating.
- if my BG is in double figures, Fiasp takes forever to start - easily over an hour. My insulin resistance becomes much higher. So, I have to bolus very early. Actually, I keep a close eye on my BG and take corrections if I see my BG heading that way.

You may think this is irrelevant if you get your promised pump. However, even with HCL (hybrid closed loop), you need to consider your pre-bolus dose and timing in the same way as MDI. Unfortunately, pumping does not make it much easier.
The main benefits of pumping are small doses, ability to adjust basal for different times of the day (helps with DP) and ability to suspend basal (e.g. to avoid hypos when exercising). Pumps do not help with hypo awareness.

My other thought is that you mentioned night time hypos. Are these confirmed with finger pricks or could they be compression lows - false lows when you lie on your sensor in your sleep and apply pressure?

Apologies if you are aware of all of this and I am teaching you to “suck eggs”.

Thanks a lot for taking the time to reply!

The swings have been this way ever since I was diagnosed (going on 3 years now), however I’ve noticed my insulin resistance slowly growing as time has gone on (this was the same when on Novorapid and Abasaglar). Despite still spiking with the Fiasp, I’ve noticed it’s still better than the Novorapid fortunately. Thanks for the advice re: Levemir, definitely something to keep in mind. Does it work similarly to Abasaglar? I had the same issues when using that too.

Totally appreciate a pump requires the same effort as MDI’s on paper, but it’s less cumbersome to bolus compared to injection (imo!), more discreet, and is always attached, which means I can have greater spontaneity in grabbing something to eat if I’m out and about and get peckish (I’ll frequently forget to take my insulin with me when going out, or leave it behind if I don’t have plans to eat).

I also appreciate HCL doesn’t help with hypo awareness, and my CGM has been an absolute game changer with that, but it’s not uncommon for me to snooze my CGM alarm when I’m half asleep, delaying the treatment of a hyper/hypo. Knowing that a HCL can help with that by suspending/delivering insulin is a big relief, not to mention the benefit of undisturbed sleep!

I’d say around 95% of the time they’re actual bonafide hypos. I know the G7 gets a bad rap, but I’ve actually found it to be more accurate than when I was on the Libre 2! Fortunately I tend to sleep on my back vampire style like a complete psychopath, so compression lows don’t tend to be too much of a concern.

Please don’t apologise for the advice you’ve offered! It’s always good to touch base and look over everything from top to bottom to see if there’s anything that I might be doing wrong. Any and all responses are definitely appreciated!

 

[Bruce Stephens]

Does it work similarly to Abasaglar?

As I understand it Abasaglar is once a day. Levemir is twice a day (with a few hours overlap) so you can (and most of us do) have rather different doses for the day and night (the dose I give in the morning is about double the one I take in the evening).

 

[Inka]

I haven’t heard anything bad about the G7 - I have one and it’s totally brilliant! Way more accurate than the Libre2 and far better alarms. I agree with @helli that Levemir might be an option to try. It would also be good prep for a pump as you’d be adjusting two separate doses according to need.

Regarding pump access, you could approach another nearby hospital and make enquiries, or you could ask your consultant or DSN if they know nearby places with quicker access to a pump.

Do you have the G7 receiver? If you do and put it in an empty glass or on something metal, the alarm and vibration (aka very loud rattling/clanging) should wake you. Mine wakes me with a start!

 

[Thebearcametoo]

Have you gone through PALS at your hospital? If you still don’t get anywhere then the neighbouring trusts are your best bet just because of access. I don’t know where in the country you are as to suggesting elsewhere. Oxford has been good for us but I only have experience with the paeds team not the adult team.