"Failure to control diabetic pumps and sensors"

I was assessed and then supplied with an insulin pump at Crosshouse Hospital (I should say that I specifically requested this particular pump because the reports of its use in the USA gave it a tremendous reputation).  I met with the rep and the hospital staff and was shown how to fit and operate the pump.

Shortly after this the pump threw up an error code and would not deliver insulin so I phoned the supplier helpline and they diagnosed that the pump had failed and promised to send a replacement the next day - this they did.

So now I am on pump no2 and after a few days it refuses to accept either the number 0 or a decimal point - so if my bs was at 9.9 I could either enter 9 or 11 - not great!

This time I met with their rep and hospital staff at Crosshouse where it was confirmed the pump calibration was at fault and the rep promised another new one the following day.  They also promised that because of my experience with the pumps they would try and get me one of the new models from the USA.  This was what all users of this particular pump were waiting for the difference being that the old pumps could not work with the sensors (all the USA pumps can do this but the UK got old stock with the promise of a software update in the future) - so I felt very optimistic.

I am a type 1 diabetic with reduced hypo awareness and the huge difference the new pumps have is a feature called "Hypo Guard"  where the cgm sensor sends the pump 5 minute updates on your bs and if the pump predicts danger of a hypo it stops delivering insulin automatically so removing the danger and allowing people like me to live as near a normal life as possible.

So I get the new pump and the rep goes through the sensor details and how to link the two components together.  So now off I go into a bright new world - or so I thought!

The first couple of days were wonderful with the system living up to its reputation - it was everything I could have wished for but day 3 and suddenly the pump beeps an alarm and sends out a warning "sensor error".  It is a safety feature of all these auto pumps that if the cgm sensor fails then the pump immediately ceases to operate other than in manual mode (which obviously does not have Hypo Guard because that needs the cgm.

I phone the the supplier helpline and meet with the response "oh it's a sensor error so you will have to phone the sensor helpline".   I should say that I also had the sensor manufacturer phone app working all this time and it could still read the cgm sensor no problem which made me doubt that it was a sensor error and I did a blood test to check the readings and they were okay.

I phone the sensor manufacturer and tell them that my pump is showing a sensor error reading and they immediately say that they cannot help and I should speak to the pump supplier!  I say but it's a their sensor and the staff member informed me that they have no contractual obligation to Tandem or Air Liquide in the UK.   This staff member went on to explain that in the US they did work very closely with Tandem and they were trained on Tandem pumps, had the correct diagnostic equipment and could therefore respond to any problem either with a pump or a sensor, however, Tandem US paid them to carry out this work and no such arrangement had been agreed for the UK,  They were not trained on the pumps, could not diagnose faults and so they could not help me!  Phone your pump supplier!

I phone the pump supplier who go through the whole phone sensor manufacturer thing again but eventually I convince them and they say they are not supposed to phone the sensor manufacturer, but this time they will!   They phoned me back shortly after to say they have purchased another sensor and it will be sent by express courier and they have  asked sensor manufacturer to phone me to confirm this which they do but the guy also reminds me (very politely) that I have no right to contact the technical helpline!

The new sensor arrives and I fit it on - it takes 2 hours for the sensor to warm up during which time it does not give readings - just shows a spinning wheel counting down 2 hours.  About 1 hour in it asks do I want to start the sensor - this stops me dead!  You cannot stop and start these sensors - if you stop them for any reason that is the end of their life, so why on earth is the pump asking me to restart the sensor because to do that I will have to stop the sensor which will kill it!  I decide to wait it out and see what will happen at the end of the 2 hour warm up - nothing happens, the pump is locked on that message so I figure maybe it didn't start it correctly and this time it will - so I stop the sensor and then try to restart - guess what!  The sensor is now dead!  

Following day I phone pump and tell them the story.  They suggest putting the pump into hibernate mode and restarting it after a few hours in the meantime they will arrange for another sensor to be delivered.  I do as they ask and the next day when the new sensor arrives I fit it, connect the pump and start the sensor.  After the warm up the pump displays a red triangle and the message "sensor error - wait 2 hours", after some time the message goes away and it's systems go - for a couple of hours then it's back to "sensor error".  Meanwhile my sensor phone app is working away just fine reading the sensor without a problem.

I phone the pump supplier and tell them the story (the pump wasn't working at this point, other than manual mode).  the call handler asks me where I have the pump on my body and I say on my belt and the sensor is on my tummy.  Ah, they reply, that might be the problem!  It could be too close to the pump so the blue tooth signal is distorted, we've had that happen before (this is when I discover that they know about this problem but have not resolved it).   Try re positioning the sensor on your arm above the bicep and that might help and I'll get another sensor sent to you.

The sensor arrives and I put it on my arm and go through the warm up again - and again "sensor error" (the phone app is fine with the signal).

I've had enough, so I decide to phone the sensor manufacturer and throw myself at their mercy because there must be a reason this is happening!  The staff member is really nice and we talk "informally" until I tell them about the pump supplier telling me to move the sensor to my arm - at this point their voice changes and I can tell they are not happy - the only place you can put a G6 sensor is on your tummy - that is the only site licensed in the UK so they had absolutely no right to tell you to move it and if you go to our website we make it clear you must not put it anywhere else - I checked and they were right!

Now I really have had enough and I write a long email to the diabetic team at Crosshouse setting out all that I have gone through, that there is no resolution in sight and that I do not believe the sensors are faulty at all because my phone app has no problem it's only the pump which does.   I've already had 2 faulty pumps and here I am with yet another non working piece of junk.  I want to return it and look into alternatives even if that means self funding.

A staff member emails me asking me to reconsider and they will arrange a meeting at the hospital with the rep in attendance to see what we can work out.

At the meeting I hand over the pump to the rep for them to try and connect with the sensor - while this is ongoing I tell this member of staff about the lack of a contractual relationship between the pump supplier and sensor supplier which results in pump users not getting help - yes they can says the rep!   I feel I am basically been called a liar.  None of the hospital staff say anything or intervene.   What about your helpline advising me to change the sensor position to my arm?  The sensor supplier were not happy about that because only the tummy is a licensed site and their web page makes this clear - nothing, just silence!   Now the rep starts packing up the pump and I ask if they managed to connect it - no answer!

So I leave the meeting feeling so down and despondent I could hardly lift my feet.  I go back on mdi and penject and start looking into self funding.  I contact another supplier who would love to sell me a system at around £4000 but they need a letter from the hospital to confirm that it will be supervising the pumps use.  I don't know if Crosshouse will agree to this or if they will reclaim the cost of the pump from the supplier as I said they should during the meeting.

Shortly after this I get an email from the pump supplier saying good news, we are ready to roll out the software update so that very shortly in the UK all these pumps will be able to communicate with the sensors.   This means that very soon the NHS is going to have loads of patients complaining that they are getting faults and nobody is accepting responsibility, so I decide  to contact Ayrshire & Arran Health board to complain about the issue (but not about the hospital staff).

So I phone in and a few days later I get a phone call from the complaints desk and we go through the whole thing in detail, especially about my concern that the UK NHS was about to have loads of people going through the same problem.

I also raised the issue of where the last pump now was.  I explained that I was concerned if the hospital had paid for the pump then it was unlikely to want to fund me for another but if they had reclaimed the expenditure then that would resolve that issue.

This staff member was very nice and took down all the details before saying that they could see that this issue could affect many people and that they would write to the pump supplier asking for proof of a contractual relationship between them and the sensor supplier in the UK.  They also said if they were not provided with such proof  they would contact the finance department to make them aware of the problem and raise questions about further use of these type of  pumps until it was resolved.  And would email Crosshouse and ask what had happened to the pump I had returned (they had already checked the file and there was no mention of the pump in my case notes).   I was told that things would be actioned the following week and I would hear back about the outcome either by mail or they might phone me,

I felt quite positive about things after that and decided to wait to see how things went, until today!   It is now quite a few weeks since that conversation and today I received another phone call, but not from the complaint desk - this was a follow up on my complaint now that "it had been closed".  Closed?

Turns out nothing has happened, nothing has been done, no answers obtained, absolutely nothing!   What a complete waste of time.

I think more pump users will experience the problems I had.  I hope the hospital has not paid up for useless equipment, and I feel I am back in the dark ages on mdi and penject.