Hi, I'm nearly 72 and have been T1D for over 44 years. I have completely lost my hypo symptoms. I live on my own and frankly am scared of having a bad hypo and not being able to cope. I am on a Medtronic pump, which is about to run out of guarantee and a Libre sensor. I asked for a closed loop system in October 2023 and was advised to relax my basal by ten per cent and to change my boundaries from 4 to 11 instead of 3 to ten. My hypo symptoms did not return. I only see my specialist once a year. It was agreed on 14th November 2024 that I would be upgraded to a Dexcom and funding would be applied for an Omnipod to replace my Medtronic. when my guarantee runs out on 2/3/25. I was told the Dexcom would be ordered and it was about a six week waiting list, ie the end of December. In the middle of January I chased up what was happening with the diabetes specialist nurse present at the appointment. She took over a week to get back to me and hadn't read my notes. She eventually got back to me and said that Cambridge changed the rules and would no longer give the Dexcom/ Omnipod closed loop to adults over 18 suffering from disabling hypos. Has anyone else had this problem? Can I appeal the decision?
Cambridge health authority not following closed loop guidelines for adults with disabling hypos.
- Thread starter oldtypeone
- Start Date
Not all hospitals offer the same pumps. They have to have staff trained in how to use it, in order to support their patients. Were you offered a different hcl pump?
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- 896
- Type of diabetes
- Type 1
- Treatment type
- Pump
Hi @oldtypeone
I can’t imagine how scary it must be not having hypo symptoms and living alone. I’m lucky to have symptoms and also live with others. It’s possible that your particular hospital is no longer offering the Omnipod 5 which is why they have told you you can no longer have it, as far as I know a lot of hospitals don’t actually offer the Omnipod 5 whether that be due to training limitations, cost etc..
I would definitely see if you can appeal as you were previously told you could have it and see if they can offer an alternative to the Omnipod/Dexcom combination. There are plenty of hybrid closed loop options out there they could offer you.
I can’t imagine how scary it must be not having hypo symptoms and living alone. I’m lucky to have symptoms and also live with others. It’s possible that your particular hospital is no longer offering the Omnipod 5 which is why they have told you you can no longer have it, as far as I know a lot of hospitals don’t actually offer the Omnipod 5 whether that be due to training limitations, cost etc..
I would definitely see if you can appeal as you were previously told you could have it and see if they can offer an alternative to the Omnipod/Dexcom combination. There are plenty of hybrid closed loop options out there they could offer you.
@oldtypeone as you are used to a Medtronic pump, why not ask for their Guardian 4 sensors and transmitter or, if it's available, the new Medtronic sensor (I can't remember the name) which is a sensor and transmitter combined. This will give you the necessary closed loop system. If they refuse this, you should make an official complaint, as they are putting you at risk.
They offer the Omnipod/Dexcom closed loop system to everyone else who meets the NICE guidelines, ie children with type one, adults with an HBA1C >58, women who are pregnant or might get pregnant it's just adults with disabling hypos who are being excluded. I was offered another Medtronic pump, which I don't want, I've run out of suitable injection sites on my stomach. I was offered an Omnipod dash which can't be looped. I can only have the Libre sensor because it's cheaper than the Dexcom.
Hi Nicola, they do offer the Omnipod/ Dexcom closed loop to everyone else on the NICE guidelines. They have just decided to exclude adults with disabling hypos. I can have another Medtronic pump, as mine is out of guarantee and continue with Libre 2 sensors. The Dexcom is apparently more expensive than the Libre so they won't give it to me.
@oldtypeone are you aware that you can put infusion sets on your midriff, tummy, back, backside (not the part you sit on) and some people use their arms or thighs? Would this make a difference to choosing Medtronic?
The Libre can't cut off insulin to prevent you going hypo, Medtronic sensors can. If your clinic insists you can only have the Libre, you could write to your MP to ask for their help.
The Libre can't cut off insulin to prevent you going hypo, Medtronic sensors can. If your clinic insists you can only have the Libre, you could write to your MP to ask for their help.
Unfortunately all they are willing to offer me is another Medtronic pump, as mine is out of guarantee, and the Libre 2 sensors. This combination is what I am currently using and can't be used as a closed loop. It is purely a cost issue. Sadly they are offering the Omnipod/Dexcom closed loop to everyone else on the NICE criteria. I'm running out of stomach for using the Medtronic and I can only use one arm for the Libre because I broke my left humerus last year and it's painful using that arm for the Libre. The fact that the Omnipod and Dexcom can be placed in other areas is one of the reasons I wanted to transfer.
I'd definitely appeal that decision then. You could also contact Partha Kar who has lead the push for closed loop systems for type 1 diabetes at NHS England.
Thank you. In the winter I normally wear leggings. Putting infusion sets is difficult on my back, backside and thighs is difficult as I can't see what I'm doing Partly placing them when I can't see what I'm doing. Also because of shoulder problems I have to sleep on my back. In the summer I put my pump in my bra, in the winter it is more difficult where to place it to avoid problems with the infusion set being pulled out when going to the toilet.
Thank you. I hadn't heard of him but I just watched a video with him and James Norton.
I've looked at the price of the guardian four sensors, they are more expensive than the Dexcom so no hope I'm afraid.
I know several people using the Omnipod/Dexcom closed loop in Peterborough. I am not aware of them being offered any other closed loop systems.
Hi everyone, Thank you for your responses. I have now discovered, but this is hearsay, that Cambridge are no longer issuing Dexcoms with closed loops to anybody. The Libre 2 plus is cheaper. They are still issuing Omnipod 5. My new diabetes nurse has ordered an Omnipod 5 for me to see what happens, if the Omnipod 5 application is unsuccessful I might be awarded an Omnipod Dash which can't be looped. That combination advantage over my current set up is no tubing and other places to put the pump. Hopefully I will get the Omnipod 5.Wish me luck. Omnipod means I have to change my insulin from Fiasp to another one which is a worry. I am going to enquire about appealing if I don't get Omnipod 5. I have fortunately now got a new diabetes specialist nurse who is working hard on my behalf
