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Pump Pathway - specifically when at the end of warranty

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pregogirl

New Member
Relationship to Diabetes
Parent of person with diabetes
Hi Folks

For some background, my son is T1 - coming up to 5 years. He has been pumping for 4 and a half years. After much discussion, we decided that we would stay on the same pump at the end of our 4 year warranty. Our hospital is now wanting us to go on a Pump school that is effectively for people transitioning to pump therapy from MDI. It is six dates (each being 3 hours long) over 3 months. We are at a different hospital from diagnosis.

I completely appreciate that hospitals need to ensure patients are fully trained up before funding the technology. I also appreciate that further training will be needed if moving over to a different pump. I am however frustrated that there is no concessions to account for our experience for the last 4 and a half years. We do also make sure we use the functionality of the pump, when appropriate. (IE TBR's, different Bolus options. His last HbA1C was 6.2 and I download his BG results and discuss with his team usually every week to ten days.

I was wanting to ask about other peoples experiences in this area - are there any parents / patients who stuck with the same pump? How was that transition managed? I may be fighting a loosing battle but just feeling a bit mystified by the whole thing.
 
We are on our second Combo. Thought we wouldn't be able to get another one and had almost decided to switch to Medtronic, but then found out that Roche are going to carry on making and supporting the Combo for a few more years due to so many problems with the Insight. So decided to stay with the same one one more time. Changeover was easy, I didn't even take my daughter with me, I just went along to the meeting on my own, there were other people there and some were switching to Roche from a different pump so the Roche rep was there to answer any questions. I basically just got the new pump from the nurse, set it up there and then by myself (had taken a cartridge and insulin vial with me) and then just swapped it over later at home. The whole meeting was only an hour or so I think. The hospital didn't want the old one back, I understood that it remains their property not ours and thought they might like to maybe use it for training purposes if they can't give it to anyone else to use, but they said we could keep it as a spare!

We do have the advantage that we have stayed with the same hospital the whole time so they know our history, but even when we got the first pump we didn't have to go on courses, we just learnt as we went along. On the first day we set it up and had a crash course in bolusing and basic functions, went for lunch (in the hospital cafe reading carb info off the back of packets) and then went back for a half hour lesson on carb counting with the dietician. Did next pump refill under supervision of DSN and pump rep and then were basically left to get on with it, although the hospital team were great at helping if we got stuck, and we were in and out of hospital every week or two anyway at first because daughter was still so newly diagnosed. Daughter had only been diagnosed 8 days when we got the first pump so it was massive brain overload, we were still getting used to the diagnosis and how our lives had changed, and then had to learn a whole load of new stuff straight away! It was hard but we got through it and never looked back! For the third refill we were actually on holiday at Center Parcs (which had been booked before daughter was diagnosed) and so we had to get on with it on our own, was scary and took us ages but we did it! I remember daughter was hypo a lot on that holiday and there were lots of emails going back and forth to the DSN to find out how to adjust the pump settings (phone signal was atrocious so it wasn't possible to phone them, could just about stay on line long enough to pick up email) but we managed and it didn't spoil the holiday too much!

It always amuses me that adults who are getting a pump aren't allowed to have it until they have gone on a training course and proved that they understand how to use the thing - we were just given it and told to get on with it, and nobody checked in advance whether we were intelligent enough to use it, it was just assumed that we would manage as long as we got a bit of ongoing help in the beginning. Yes it was tough at times, but if we can manage then so can most other people I would have thought o_O
 
Whilst I understand your frustration - perhaps the local agreement with the CCG might be for each pumper to have attended the course. Hence if you want them to foot the bill, you have to attend.

Have you discussed this with the consultant and asked if this the ONLY way the clinic are prepared to assess whether you are making full use of the pump and the CCG investment?
 
It may be that the hospital know you don’t necessarily need this session, although I suppose we could all learn something from these things. I don’t know for sure, but it’s possible that they are under pressure to not just offer these sessions (which may have satisfied the suits previously) but to achieve a certain level of attendance in order to meet certain targets. That’s what it’s about sometimes.
 
Pumps are quite different in how they work, Well done & good luck 🙂
 
Bronco Billy said:
It may be that the hospital know you don’t necessarily need this session, although I suppose we could all learn something from these things. I don’t know for sure, but it’s possible that they are under pressure to not just offer these sessions (which may have satisfied the suits previously) but to achieve a certain level of attendance in order to meet certain targets. That’s what it’s about sometimes.
Click to expand...

Ah - now! Yesterday for a totally different reason I was looking at the site menu on the DUK website and round about the same place on it as the NDA reports there was a reference to 'structured training'. I clicked on it - and it was how to code the attendance records for such things, so I do believe Bronco B is perfectly correct when he ventures that this could be a reason. Clearly - clinics DO have to tick the boxes whether we agree with it or not.
 
The hospital teams don't necessarily agree with it either. It is linked to the Best Practice Tariff, which lists certain criteria that teams have to meet. The more boxes they tick, the more money they receive from the suits in offices.
 
It's all very well clinics having to ask people to do these things and yes obviously I'm fully with that - BUT they don't make any arrangements for employed people to get the time off work or offer them Creche facilities or do the school run either! It's just a B nuisance, not a benefit, sometimes.
 
pregogirl said:
Hi Folks

For some background, my son is T1 - coming up to 5 years. He has been pumping for 4 and a half years. After much discussion, we decided that we would stay on the same pump at the end of our 4 year warranty. Our hospital is now wanting us to go on a Pump school that is effectively for people transitioning to pump therapy from MDI. It is six dates (each being 3 hours long) over 3 months. We are at a different hospital from diagnosis.

I completely appreciate that hospitals need to ensure patients are fully trained up before funding the technology. I also appreciate that further training will be needed if moving over to a different pump. I am however frustrated that there is no concessions to account for our experience for the last 4 and a half years. We do also make sure we use the functionality of the pump, when appropriate. (IE TBR's, different Bolus options. His last HbA1C was 6.2 and I download his BG results and discuss with his team usually every week to ten days.

I was wanting to ask about other peoples experiences in this area - are there any parents / patients who stuck with the same pump? How was that transition managed? I may be fighting a loosing battle but just feeling a bit mystified by the whole thing.
Click to expand...
If life was so easy ? Good luck with you & your son are doing 😉 Pumps are good.
 
Status
This thread is now closed. Please contact Anna DUK, Ieva DUK or everydayupsanddowns if you would like it re-opened.
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