Hi just want to know how long waiting lists are where you are as my list in Milton Keynes is over 10 years long and is done be need. I do meet the current guidelines but there seems to be two groups ie pregnant mothers and children are in the first group and the rest of us in the second group. reading between the lines I think its a no chance of ever getting on a pump. I meet the guide lines and I can not detect Hypos so I past out hitting what ever seems to be near by causing mostly head injuries. P.S I've been trying for 40 years to get in range and failing I have hit total burnout. I'm on CGM but it doesn't quite keep up with my blood sugars when they go down.
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Waiting Times for closed loop pumps
- Thread starter Mr T
- Start date
I have no idea how big the closed loop waiting list in my area - I have just been told there is no chance I will get one unless I get pregnant and there is little chance of that.
Is there a shorter "manual pump" list? Given the experience I have read and how some people have needed to revert to manual mode more often that they would want, I think it is important to take the time to learn how to do it manually first and then the "emergency" if you need to revert comes more naturally.
Is there a shorter "manual pump" list? Given the experience I have read and how some people have needed to revert to manual mode more often that they would want, I think it is important to take the time to learn how to do it manually first and then the "emergency" if you need to revert comes more naturally.
PhoebeC
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- Type 1
I was told 12-18 months by my nurse about this time last year, then at my last consultant appointment in October I was asked if I was still interested in HCL. I said yes, she said the nurse would be in touch, by December I was on it.
It was 6 months for me.
rebrascora
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@helli I believe many areas have suspended all new pump starts apart from children and pregnant women until they have trained their current pump users who want HCL, so starting on a manual pump may not be an option at the moment for a lot of people.
@Mr T Sorry to hear you are caught in the backlog of HCL training. 10years seems like an extremely pessimistic prediction and I am sure that @Bruce Stephens posted something a year or so ago from Professor Partha Karr saying that he hoped every Type 1 who wanted a pump would have access by 5 years time. That may be optimistic but we know Partha Karr can make things happen. Maybe I am misremembering that though!
@Mr T Have you had a DAFNE or local equivalent course? What do you have your low alarm on your CGM set at? Setting it higher can give you more warning time that your levels are dropping and therefore prevent more hypos. Have you checked that your basal dose is holding you steady in the absence of food and bolus insulin by doing some basal testing? If your basal dose is not optimised then your diabetes will be much less stable and more variable/unpredictable. Perhaps your current basal insulin does provide a profile of insulin release that your body needs. Sometimes a change of insulin can have a significant effect, sometimes beneficial, sometimes less so. For me, educating myself through this forum and carefully experimenting on myself has been key to finding what works best for me and achieving good diabetes management. It has involved some time investment but well worth it when you are talking about your long term health.
@Mr T Sorry to hear you are caught in the backlog of HCL training. 10years seems like an extremely pessimistic prediction and I am sure that @Bruce Stephens posted something a year or so ago from Professor Partha Karr saying that he hoped every Type 1 who wanted a pump would have access by 5 years time. That may be optimistic but we know Partha Karr can make things happen. Maybe I am misremembering that though!
@Mr T Have you had a DAFNE or local equivalent course? What do you have your low alarm on your CGM set at? Setting it higher can give you more warning time that your levels are dropping and therefore prevent more hypos. Have you checked that your basal dose is holding you steady in the absence of food and bolus insulin by doing some basal testing? If your basal dose is not optimised then your diabetes will be much less stable and more variable/unpredictable. Perhaps your current basal insulin does provide a profile of insulin release that your body needs. Sometimes a change of insulin can have a significant effect, sometimes beneficial, sometimes less so. For me, educating myself through this forum and carefully experimenting on myself has been key to finding what works best for me and achieving good diabetes management. It has involved some time investment but well worth it when you are talking about your long term health.
Bruce Stephens
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Inka
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- Type 1
@Mr T Which CGM do you have? If you don’t have an ‘extra’ one, then maybe while you’re waiting for a pump you could push for a Dexcom G7. That has a Falling Fast alarm and many people find it a lot more accurate than the Libre. It also has an Urgent Low alarm and the ability to set your Low alarm higher so you can catch the lows better.
I appreciate you want a pump and loop, but the G7 is fantastic and could help you in the meantime.
I appreciate you want a pump and loop, but the G7 is fantastic and could help you in the meantime.
- Relationship to Diabetes
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Sorry to hear you’ve been given a rather lengthy estimate of a possible waiting time in your area @Mr T
I hear your frustration.
And I suspect a closed loop might help quite a bit.
But my experience is that they are fairly slow to act. And they mostly act pretty gently. So while the best ones do save you some brain space (by which I mean the ones that best match the needs of an individual’s diabetes in the ways the algorithm is structured and programmed, rather than a particular product), none of them really ‘take over’ your diabetes management to any great extent.
There’s a bit of added polish. But fast drops will still crash you into hypos. Too much IOB and then activity on top will still outrun a predictive low glucose suspend.
My suggestion would be not to wait. To plunder the hive mind of the forum for the irritations, frustrations, and why isn’t this working moments of your current MDI system.
I first joined forums after about 20 years of diabetes after a really nasty hypo, and having always ‘preferred to run a bit on the low side’ my warning signs were distinctly flagging.
The support and encouragement I received from various groups/platforms (including some no longer available) taught me more about diabetes management in 18 months than I’d learned in the previous 10+ years.
And I massively reduced the number of lows I was having, without my HbA1c going up much at all. If anything it came down as my hypos reduced.
Good luck, and fire away with any questions. MDI and a CGM is a pretty brilliant diabetes management toolkit to be honest. And any tweaks you learn to make over the next few years will make your diabetes management more ‘pump evolved’ and the transition to pump / HCL easier.
I hear your frustration.
And I suspect a closed loop might help quite a bit.
But my experience is that they are fairly slow to act. And they mostly act pretty gently. So while the best ones do save you some brain space (by which I mean the ones that best match the needs of an individual’s diabetes in the ways the algorithm is structured and programmed, rather than a particular product), none of them really ‘take over’ your diabetes management to any great extent.
There’s a bit of added polish. But fast drops will still crash you into hypos. Too much IOB and then activity on top will still outrun a predictive low glucose suspend.
My suggestion would be not to wait. To plunder the hive mind of the forum for the irritations, frustrations, and why isn’t this working moments of your current MDI system.
I first joined forums after about 20 years of diabetes after a really nasty hypo, and having always ‘preferred to run a bit on the low side’ my warning signs were distinctly flagging.
The support and encouragement I received from various groups/platforms (including some no longer available) taught me more about diabetes management in 18 months than I’d learned in the previous 10+ years.
And I massively reduced the number of lows I was having, without my HbA1c going up much at all. If anything it came down as my hypos reduced.
Good luck, and fire away with any questions. MDI and a CGM is a pretty brilliant diabetes management toolkit to be honest. And any tweaks you learn to make over the next few years will make your diabetes management more ‘pump evolved’ and the transition to pump / HCL easier.
I was told I was managing well so no need for a pump despite meeting the criteria e.g. no pancreas 🙂
Didn't even get as far as waiting times or options. Fortunately I'm not entirely sold on the idea of a pump but it seems strange that I would have to let my control slip intentionally if I feel I did need one.
Didn't even get as far as waiting times or options. Fortunately I'm not entirely sold on the idea of a pump but it seems strange that I would have to let my control slip intentionally if I feel I did need one.
counsellorneil
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- Type 1
Really frustrating for you. Maybe you could push to get an Omnipod Dash, not itself closed loop, but then use a DIY loop app, like Loop or Trio to do closed loop. See https://www.loopandlearn.org/
m1dnc
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I've been DIY looping with Loop since January this year, using Omnipod Dash and Dexcom G6. It was a hard/very hard learning curve, but I'm pleased with the results, with a TIR of around 90% and my last HbA1c of 5.9%. My clinic has pre-approved me for Omnipod 5 but no idea when this will happen, and now that I'm settled with Loop I'm not even bothered that much.
counsellorneil
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- Type 1
Great to find another person DIY looping. It really is a wonderful help in managing my diabetes. Some people get on well with Omnipod 5, but I hear many who don’t. I was offered 5 a couple of months back, but declined. Thankfully my clinic were understanding, especially my DSN, who when the consultant had to leave the room, whispered unofficially they thought I was better off DIY looping.
The time scale is correct my diabetic team only gets 3 closed loop pumps a year the list is 33 people long so even if no one else placed on it is 10 years. Bertie and Dafine done. Alarm is set for low blood sugars but I spend most of my time outside in noise so can not hear it and the vibe isnt much good. my hypos dont give warning my bloods drop like a stone the cgm dosent keep up. they happen at any time no fixed point like before food or exercise etc. I've spent years trying to get this right the only way forward is a pump closed loop have hypo guards etc.
Hi I've spent many years trying to get this right nurses Dr etc have all failed my diabetic service is a nhs private thing under funded and staffed, yes I've read a libary full of books done all the courses and sources if I could fund one my self I would but I don't earn enough. Please note i've been diabetic 40 years.