Privately Funded Omnipod 5

JamesB_

JamesB_

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Type 1
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Hi everyone,

Does anyone have any experience going private for an insulin pump in the UK?

I am over 2 years away from the front of the waiting list at my local NHS trust and understand the costs involved with going private and that I can ultimately refer myself.

However, my diabetes team told me if my A1c improves I’d still be eligible but would struggle to get back onto NHS funded as they’d prioritise worse off people. It sounds like they won’t put any agreement in place for me to transition back to NHS funded so I might be stuck paying for consumables for a long time.

I’d be really interested to hear people’s thoughts and experiences particularly with London Medical. I’m almost at a decision to just refer myself and put up with the financial burden as I’m really struggling with my diabetes management despite my best efforts.
 
Good grief! Two years on a waiting list! I'm sorry I have no experience of pumps, but I was so shocked by this I had to respond. Best of luck.
 
Could you not refer yourself to a different UK hospital? Hopefully one with a shorter waiting time?

I would be a bit cautious about self funding, partly because an insulin pump isn’t simply plug-and-play, and it can be very helpful to have experienced clinicians to help guide you through the first year.

Which of the NICE criteria do you qualify under?
 
It is a huge financial burden and I would be worried that by self funding, you would be left high and dry from the NHS.
I wonder if there are things that the forum members can help you with, to improve your diabetes management with MDI whilst you wait for NHS funding. Or if you meet the NICE criteria for funding, have you considered being referred to another hospital where you might have a shorter wait?
The forum is a gold mine of practical experience in managing diabetes with insulin, so maybe there are some tips and tricks that might work to improve things but I understand that you may have your heart set on a pump. I think the thing to bear in mind is that they are not just "plug and play" and you may need some expert support. Does your clinic support Omnipod 5 that you could fall back on them for advice if you needed it?
 
everydayupsanddowns said:
Could you not refer yourself to a different UK hospital? Hopefully one with a shorter waiting time?

I would be a bit cautious about self funding, partly because an insulin pump isn’t simply plug-and-play, and it can be very helpful to have experienced clinicians to help guide you through the first year.

Which of the NICE criteria do you qualify under?
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Hi @everydayupsanddowns,

Thanks for the response!

Someone did suggest referring to a different hospital however they weren't able to tell me if the waiting list was any shorter there and I was told I'd have to go through all the initial appointments again etc. so it's a bit of a gamble.

I get your concern and understand that starting a pump can be complex, thankfully part of going private includes initial appointments with a nurse, consultant and dietician as well as 3 months of follow ups. Then you have to have yearly consultant appointments for as long as you get pump supplies from them. It's also possible to have a chargeable DSN appointment at any time if there's any issues.

You will be horrified but my A1c was 84 as of my last check. I'm 'lab conditions' as far as a diabetic is concerned. I eat exactly the same thing every day and work from home. I rarely go outdoors and follow a very similar routine daily yet I still get it wrong. I understand that things are variable as a diabetic but surely it shouldn't be like this?

The thought of two or more years of struggling through this is a daunting prospect. It is a financial burden but I'm in my late 20's and feel unable to live my life.
 
rebrascora said:
It is a huge financial burden and I would be worried that by self funding, you would be left high and dry from the NHS.
I wonder if there are things that the forum members can help you with, to improve your diabetes management with MDI whilst you wait for NHS funding. Or if you meet the NICE criteria for funding, have you considered being referred to another hospital where you might have a shorter wait?
The forum is a gold mine of practical experience in managing diabetes with insulin, so maybe there are some tips and tricks that might work to improve things but I understand that you may have your heart set on a pump. I think the thing to bear in mind is that they are not just "plug and play" and you may need some expert support. Does your clinic support Omnipod 5 that you could fall back on them for advice if you needed it?
Click to expand...
Hi @rebrascora,

Thanks for that, I definitely agree it's a big financial decision.

My responses to this are mostly covered in my last reply but just wanted to reply and say thank you, you make some really good points.

I do feel that I spend a lot of time researching and trying to understand different things I can try to make it better. I don't know if I'm in a bit of a cycle of coming out of my honeymoon period but like I said things are so variable it's hard to grasp my insulin dosing. For example, I've had to take 7 units more bolus than this time last week for exactly the same meals and I don't think I'm ill. It's so strange and sudden insulin sensitivity/resistance seems to happen at a moments notice.
 
I didn't know that there was a "package" option with consultant, nurse and dietician appointments as well as the pump consumables. I assumed it was just a question of signing a contract with a pump manufacturer, so that is interesting to know.

Can you tell us which insulins you use and which CGM you have?

How long have you been diagnosed? Have you seen any notable increase in your insulin needs over that time?

Have you had a DAFNE or local equivalent insulin dosing intensive education course? Usually 5 days either as a whole week or 1 day a week spread over several weeks? It used to be a prerequisite in some areas for people to be considered for a pump. After my DAFNE course I felt more confident to take up the reins with my diabetes management and in particular adjusting my basal (long acting) insulin doses which has been a really important step for me in managing my diabetes well. If your basal isn't right then nothing makes sense and basal needs don't always stay the same from week to week or month to month. The change of the seasons at this time of year can be a trigger for many people to need more basal insulin.

Personally I have learned far more from people here on the forum and experimenting on myself than I ever have from any other source including DAFNE but then I had learned a lot from people here before I attended it, so in some respects the course was a confidence booster as I had a much greater depth of knowledge than most of the other people on the course who had been diagnosed for decades.

If it is any consolation, we all get spells when we need significantly more insulin than we expect for no obvious reason. Sometimes you can put it down to stress or anxiety or dehydration or ambient temp. or alcohol or lack of sleep or perhaps your basal insulin needs have changed and you need to adjust your basal dose(s) My basal insulin needs very regular "tweaking" and it always surprises me that I can be needing 8-10units of corrections for a couple of days to keep me in range but if I up my basal dose by just 2 units everything is back to normal the next day.
Another thing to consider at this time of year particularly is... Have you recently had a vaccination for flu or Covid as that can really mess with your insulin needs.

Knowing more about your individual diabetes journey and management, might give us an insight into what we could suggest you try to possibly improve things.
 
rebrascora said:
I didn't know that there was a "package" option with consultant, nurse and dietician appointments as well as the pump consumables. I assumed it was just a question of signing a contract with a pump manufacturer, so that is interesting to know.

Can you tell us which insulins you use and which CGM you have?

How long have you been diagnosed? Have you seen any notable increase in your insulin needs over that time?

Have you had a DAFNE or local equivalent insulin dosing intensive education course? Usually 5 days either as a whole week or 1 day a week spread over several weeks? It used to be a prerequisite in some areas for people to be considered for a pump. After my DAFNE course I felt more confident to take up the reins with my diabetes management and in particular adjusting my basal (long acting) insulin doses which has been a really important step for me in managing my diabetes well. If your basal isn't right then nothing makes sense and basal needs don't always stay the same from week to week or month to month. The change of the seasons at this time of year can be a trigger for many people to need more basal insulin.

Personally I have learned far more from people here on the forum and experimenting on myself than I ever have from any other source including DAFNE but then I had learned a lot from people here before I attended it, so in some respects the course was a confidence booster as I had a much greater depth of knowledge than most of the other people on the course who had been diagnosed for decades.

If it is any consolation, we all get spells when we need significantly more insulin than we expect for no obvious reason. Sometimes you can put it down to stress or anxiety or dehydration or ambient temp. or alcohol or lack of sleep or perhaps your basal insulin needs have changed and you need to adjust your basal dose(s) My basal insulin needs very regular "tweaking" and it always surprises me that I can be needing 8-10units of corrections for a couple of days to keep me in range but if I up my basal dose by just 2 units everything is back to normal the next day.
Another thing to consider at this time of year particularly is... Have you recently had a vaccination for flu or Covid as that can really mess with your insulin needs.

Knowing more about your individual diabetes journey and management, might give us an insight into what we could suggest you try to possibly improve things.
Click to expand...

It was definitely a surprise to me but it makes sense, I was told Omnipod apparently won't give you the supplies directly, at least not in the UK.

I am currently on Tresiba and Novorapid, my CGM is the Freestyle Libre 2 Plus. I started on Dexcom G7 but they rarely lasted a few days before reading LOW and eventually failing. Libre works well for me, I'm very skinny so it could be something to do with that.

I was diagnosed in June 2023 when I was in hospital with DKA, it kind of came out of nowhere and even the hospital staff were surprised and struggling to get things under control. I left hospital with a nice easy 1-10 ratio but have needed anything from 1:9 to 1:20 since then. I think what I find the most difficult is the variability in how carbs process for me. At the moment I could take 5 units for my evening meal and peak up to 16/17mmols yet in the past that same meal would cause me to plummet if I took even 3 units upfront. In fact I previously even had to split the dose for it. When I go through my phases of needing more insulin (which have come and gone about 4 times) I actually find my diabetes much easier to manage. I can be much more aggressive with my dosing without fear of random hypos. This is what makes me think I keep almost coming out of my honeymoon phase. In short, there have been a few times where I have seen an upward trend of insulin requirements but they have always reverted back again.

I completed DAFNE over several weeks and I did find it helpful, in fact I ended up hospitalised with high blood glucose levels and ketones the week before we learned sick days rules, just my luck! What I learned from that very session has prevented me going to hospital for the same reason several times since! I feel pretty comfortable with carb counting but I still end up eating the same thing every day due to fear of it acting differently to my usual meal because of other factors like fat, protein and activity levels.

I had my COVID and flu vaccines a few weeks ago and it really did suck but I got through it thankfully! My plan is to up my Tresiba another unit tonight (I did discuss this with a DSN). My basal started at 15 and is now at 18, I always wait 3 days between changes to see the result. It's strange but last week I'd gradually drop about 5-6mmol overnight but now I stay level, more evidence that my insulin requirements have changed. I haven't drank since my diagnosis except a small whiskey the other day which terrified me! I get that there's plenty of other factors that could be at play here.

I think the reason I have such a fear of hypos is that whenever I get them I drop so fast it feels like I have barely caught them in time. I worry that I'll never get over this fear in order to be more aggressive with my corrections, even with diabetes therapy I'm still in this position. I worry about long term health conditions, losing out on so much of my late 20s/early 30s living in fear, hence my serious consideration of going private.

I know I keep saying it but really appreciate all your suggestions and help, I am taking it all on board. If there's any other info I can provide please let me know.
 
@JamesB_ I am in no way attempting to undermine you so please don't think that I am.

First a couple of questions - 1. what fast acting insulin do you currently use? 2. which other insulins of either type have you tried and discarded already?

I am simply not in favour of such long acting basal insulin as eg Tresiba for anyone newly diagnosed and in my book you are newly diagnosed and I know too damn well that sometimes we simply need to kiss any number of frogs before we find our prince/princess and when we do - its such a relief. So what have you tried before?
 
trophywench said:
@JamesB_ I am in no way attempting to undermine you so please don't think that I am.

First a couple of questions - 1. what fast acting insulin do you currently use? 2. which other insulins of either type have you tried and discarded already?

I am simply not in favour of such long acting basal insulin as eg Tresiba for anyone newly diagnosed and in my book you are newly diagnosed and I know too damn well that sometimes we simply need to kiss any number of frogs before we find our prince/princess and when we do - its such a relief. So what have you tried before?
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Hi @trophywench,

It's no problem, I came here for advice so I am hoping people will tell me when I'm doing things wrong 🙂

1. NovoRapid
2. I haven't tried any others yet

What you're saying about Tresiba makes total sense, other Basal insulins with a shorter acting time allow more flexibility. That being said, Tresiba is quite forgiving in terms of not having too much of a peak and can be taken a couple of hours late/early which definitely helped when I came out of hospital clueless and confused.

As part of DAFNE they wanted to change me to Levemir and I declined. I was honestly so scared at the thought of changing when Tresiba had kept me alive since hospital, I was also moving house at the time and my anxious brain just wanted to keep things simple.

My consultant also suggested changing me to Fiasp for bolus. I think he hoped it would reduce post-meal spikes as I potentially wouldn't need to pre-bolus. The reason I often don't wait before eating is not out of necessity, it's because I'm scared of my BG dropping before I go up from the meal which has happened a number of times in the past. Ultimately this was shelved because at the time we thought I was closer to getting a pump and my trust doesn't support Fiasp in Omnipod.

In terms of what I've tried, it's hard to remember everything but this is what comes to mind:
  • Splitting bolus doses
  • Waiting longer/shorter times before eating
  • Changing injection sites
  • Going for a walk after eating/not going for a walk after eating
  • Increasing basal/reducing basal
  • Adjusting I:C ratios
  • Therapy to reduce anxiety over hypos
  • Eating different foods
I have an appointment booked in next week to discuss potentially being brave and switching to Levemir, however by that point I might have just referred myself for a pump.
 
Hi @JamesB_ from another skinny person :D I mention that because I’ve had the sudden drops too, and yes they are very scary. I worked out it’s more than likely to do with my lack of fat. What’s helped me is to avoid my stomach and use my thighs for boluses. I sometimes split my boluses too.

Also, random but have you been screened for coeliac disease and Addisons? Both of those are more likely in Type 1s and can cause hypos and erratic blood sugar.
 
JamesB_ said:
I started on Dexcom G7 but they rarely lasted a few days before reading LOW and eventually failing. Libre works well for me, I'm very skinny so it could be something to do with that.
Click to expand...
I too have littler fat and was experiencing CGM failures/continuous LOWs. I eventually found out that this was due to the lack of fat in the area I positioned my sensor - the filament needs at least 5mm of fat. Moving my sensor sit slightly has resolved this issue.
 
Hi @JamesB_ from another skinny person :D I mention that because I’ve had the sudden drops too, and yes they are very scary. I worked out it’s more than likely to do with my lack of fat. What’s helped me is to avoid my stomach and use my thighs for boluses. I sometimes split my boluses too.
Click to expand...

Hi @Inka,

Sorry to hear you have also been experiencing the drops. I originally used my thigh but switched to my stomach because I read it gave more predictable absorption. Maybe I need to switch back, although at the moment I need so much more insulin lows are not as much of a problem.

That's a good point, I haven't been screened for either of those, I'll mention it to my consultant when I see them next.

I too have littler fat and was experiencing CGM failures/continuous LOWs. I eventually found out that this was due to the lack of fat in the area I positioned my sensor - the filament needs at least 5mm of fat. Moving my sensor sit slightly has resolved this issue.
Click to expand...

I tried all sorts of placements with the Dexcom but it always had the same results. At least the Libre works for the most part, but I really did prefer the Dexcom for the time it worked.
 
JamesB_ said:
I originally used my thigh but switched to my stomach because I read it gave more predictable absorption. Maybe I need to switch back, although at the moment I need so much more insulin lows are not as much of a problem.
Click to expand...
You may find this article interesting
www.diabettech.com

Location, location, location. Does cannula site affect AID performance? | Diabettech - Diabetes and Technology

Rotate your injection or infusion sites. That's a key message that anyone living with type 1 is delivered very early in their life with the condition. And for good reason. Nobody wants to have to live with scar tissue or lipohypertrophy affecting their insulin absorption. But within the advice...
www.diabettech.com www.diabettech.com

As it says, the sample size is small but it is interesting to see that the absorption at different sites is more than just speed of absorption.
(The article talks about pumping but the absorption rates should be the same with MDI.)
 
As a person who only uses 25 to 30 units of insulin per day but needs to move cannula sites every 2 days because so much of me refuses to absorb well, and not knowing which exact bits of me those are before bunging the new one in and seeing what happens, the fact that you need the cannula and therefore also the pump on the same side of your body as a CGM sensor, plus the minimum amount of insulin you can load into an pod is far more than 2 days worth, and that the pods are huge in comparison to either a Libre or a tubed pump cannula, simply makes this a complete no go personally.

Anyway @JamesB_ - please, please do try Levemir as your basal insulin. I got myself changed to it from Lantus when I was having difficulty with ups/downs and hardly ever being happy with my levels for longer than a couple of days at a time. Yes, it did mean one extra jab a day (cos it was designed to be delivered in 2 doses every 24 hrs) but gradually as I got my doses and timings thereof titrated to suit my body (and Oh yes, these things do take time, so I uncharacteristically for me, had to transform into a patient patient!) - and, it worked. Because it just doesn't hang around for ever so long in most folks' body you can tell pdq (usually within half a day) whether any increase or reduction in dose has worked, or not. Try the same again next day before deciding, just to make sure it did or didn't. If not, revert to previous for a couple of days, before trying something different and only ever change ONE thing at a time so you are 100% sure exactly which change worked well.

Good luck!
 
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