Okay, quick bit of background so title will make sense!
I have been a type 1 for well over 40 years now and last year I lost all my hypo symptoms and as a result had a hypo while out walking and spent 3 days in intensive care. I live by myself so fear of a hypo while sleeping was high and my clinic decided to put me on a pump with hypo guard technology and I was put on the Tandem T-Slim - worst thing that ever happened!
First pump lasted 2 days then it started throwing up error codes so I phoned the Air Liquide helpline (they have the UK agency for Tandem) who did the troubleshooting, said it was a faulty pump and they would send out a replacement within 24 hours - which they did.
But the replacement pump would not allow me to enter either a zero or a decimal point eg I have to enter 9 or 11 because I cannot enter 9.9 or 10 or 10.1, etc! Take it into the clinic for the AL rep to have a look at and we have another faulty pump.
Pump number 3 arrives and finally it is time for the clinic to hook up the pump to the Dexcom G6 sensor - but it refuses! Finally the AL rep realises that Dexcom have designated their own receiver as a medical device and their sensor will only communicate with one medical device for safety, so you cannot run their receiver if you are using a T-Slim.
So we power down the receiver and then have to go through the warm up period again using the pump - finally it connects - briefly. I later discover that T-Slim and the G6 do not communicate well and AL are aware of this!
The G6 actually uses 2 transmitters, one on a frequency for medical devices and a second for phone apps which is why I started running xDrip+ with the pump/G6 setup so that when the pump lost the signal while I was sleeping (and the hypoguard switched off) the phone would sound an alarm if xDrip+ read the G6 signal and I was going low.
Xdrip+ and Dexcom were rock solid talking to each other but the T-Slim just got worse, and eventually their helpline said I should try moving the G6 on to my arm because this could "often" cure the problem (this is when I discovered that they knew about the problem).
So I fit a new sensor to my arm, power up the system and after the 2 hour warm up the pump comes up with "sensor failure" but shortly after my phone bursts into life with xDrip+ reading the sensor just fine. So I phone AL again and this time they tell me to phone Dexcom because it is a sensor fault - so I phone Dexcom and this is when it moves from bad to worse!
Dexcom's immediate response was to ask what fault their receiver was showing and when I told them I was using a T-Slim so I couldn't use their receiver they stated that they had no contractual obligation with Tandem in the UK, they were not trained in the T-Slim and it was not possible for anyone to diagnose a G6 fault without using their equipment, the fact that my phone was reading the G6 signal fine lent this a lot of credence which was further strengthened when they also pointed out that the G6 is only licensed in the UK for placement on the tummy (their website also makes this clear) and I should not have been told to place it elsewhere.
So I go back to AL and tell them what Dexcom said and now they want me to go back to Dexcom again because the sensor is their product - again I point out that xDrip can read the sensor and that they should not have told me to move the G6 to an unapproved position.
Eventually the pump basically dies and I go back to mdi. I take the pump back to the clinic and tell them I want nothing more to do with it or another replacement - I want them to get their money back from AL for a non functioning device so that they can fund me again for an alternative.
Much humming and hawing; hospitals do not like to act the heavy and it's easier for them to do nothing - they just tell me to wait and they will try to arrange a meeting with the doctor who is in charge of their funding.
That was 3 weeks ago and I have done with the hospital and with waiting. I have carried out a lot of research and found another system which I think is exactly what I need and at a price I can afford to self fund - it's the Medtrum A6 tubeless system which has also got virtually the same hypoguard as T-Slim and Medtronic BUT they won't let me buy it unless the hospital agrees to supervise its use and I could wait forever for that to happen!
So can anyone think of a way for me to purchase this pump without involving the NHS? I have looked into joining a private medical group but there are none here and the cost of self funding and paying for a specialist BUPA membership is out of the question - so, any ideas?
I have been a type 1 for well over 40 years now and last year I lost all my hypo symptoms and as a result had a hypo while out walking and spent 3 days in intensive care. I live by myself so fear of a hypo while sleeping was high and my clinic decided to put me on a pump with hypo guard technology and I was put on the Tandem T-Slim - worst thing that ever happened!
First pump lasted 2 days then it started throwing up error codes so I phoned the Air Liquide helpline (they have the UK agency for Tandem) who did the troubleshooting, said it was a faulty pump and they would send out a replacement within 24 hours - which they did.
But the replacement pump would not allow me to enter either a zero or a decimal point eg I have to enter 9 or 11 because I cannot enter 9.9 or 10 or 10.1, etc! Take it into the clinic for the AL rep to have a look at and we have another faulty pump.
Pump number 3 arrives and finally it is time for the clinic to hook up the pump to the Dexcom G6 sensor - but it refuses! Finally the AL rep realises that Dexcom have designated their own receiver as a medical device and their sensor will only communicate with one medical device for safety, so you cannot run their receiver if you are using a T-Slim.
So we power down the receiver and then have to go through the warm up period again using the pump - finally it connects - briefly. I later discover that T-Slim and the G6 do not communicate well and AL are aware of this!
The G6 actually uses 2 transmitters, one on a frequency for medical devices and a second for phone apps which is why I started running xDrip+ with the pump/G6 setup so that when the pump lost the signal while I was sleeping (and the hypoguard switched off) the phone would sound an alarm if xDrip+ read the G6 signal and I was going low.
Xdrip+ and Dexcom were rock solid talking to each other but the T-Slim just got worse, and eventually their helpline said I should try moving the G6 on to my arm because this could "often" cure the problem (this is when I discovered that they knew about the problem).
So I fit a new sensor to my arm, power up the system and after the 2 hour warm up the pump comes up with "sensor failure" but shortly after my phone bursts into life with xDrip+ reading the sensor just fine. So I phone AL again and this time they tell me to phone Dexcom because it is a sensor fault - so I phone Dexcom and this is when it moves from bad to worse!
Dexcom's immediate response was to ask what fault their receiver was showing and when I told them I was using a T-Slim so I couldn't use their receiver they stated that they had no contractual obligation with Tandem in the UK, they were not trained in the T-Slim and it was not possible for anyone to diagnose a G6 fault without using their equipment, the fact that my phone was reading the G6 signal fine lent this a lot of credence which was further strengthened when they also pointed out that the G6 is only licensed in the UK for placement on the tummy (their website also makes this clear) and I should not have been told to place it elsewhere.
So I go back to AL and tell them what Dexcom said and now they want me to go back to Dexcom again because the sensor is their product - again I point out that xDrip can read the sensor and that they should not have told me to move the G6 to an unapproved position.
Eventually the pump basically dies and I go back to mdi. I take the pump back to the clinic and tell them I want nothing more to do with it or another replacement - I want them to get their money back from AL for a non functioning device so that they can fund me again for an alternative.
Much humming and hawing; hospitals do not like to act the heavy and it's easier for them to do nothing - they just tell me to wait and they will try to arrange a meeting with the doctor who is in charge of their funding.
That was 3 weeks ago and I have done with the hospital and with waiting. I have carried out a lot of research and found another system which I think is exactly what I need and at a price I can afford to self fund - it's the Medtrum A6 tubeless system which has also got virtually the same hypoguard as T-Slim and Medtronic BUT they won't let me buy it unless the hospital agrees to supervise its use and I could wait forever for that to happen!
So can anyone think of a way for me to purchase this pump without involving the NHS? I have looked into joining a private medical group but there are none here and the cost of self funding and paying for a specialist BUPA membership is out of the question - so, any ideas?
