This is my long and winding road about trying for my first pump.
I had first thought about trying to get a NHS funded pump nearly 3 years ago. Back then I had not yet discovered the Diabetic Online Community (DOC), hell I didn’t even have a Facebook account let alone Twitter.
I was on my own, trying to find a guiding light. Google was my only friend, the INPUT website looked like where I needed to go, I grabbed their Step by Step Guide and decided to email for help.
Melissa was great, she advised almost straight away that I should consider a change to a pump friendly clinic. But I didn’t know any better, my hospital was the best! So I kept the faith and stayed put.
INPUT’s advice for pump approval states:
• You adhere to multiple daily injections (MDI, 4 or more injections/day)
• You check your blood glucose 4 or more times/day and act on results
• You count carbohydrates and adjust mealtime insulin doses
• You adjust insulin for exercise, illness, stress
• You keep and review diabetes self-care logs
So now I had a road map. I had to prove I had the necessary knowledge to get the best use out of a pump without endangering my own, or even worse, some one else’s life. An all-consuming mission had begun!
Jan 2nd `13
I approached my consultant , shitting bricks and heart in mouth, I asked “I would like to have a pump, can I please have one? ” I had the data, Hell, I showed the data. I tried to prove I had the need for one (dawn phenomenon, almost no hypoawareness left and widely varying day-to-day work loads blah blah blah) The only doubt I had was that post carb-count training my Hba1c had dropped from +10.0 mmol/Ls to 7.0mmol/L which was good under the NICE guidelines but I was also having a lot of hypos and we know any fool can take too much insulin 😦
My consultant explained he would not put in any objection against the pump funding and would approve me 😮 So far so good. The appointment was made to see the DSNs, in his words “to get the ball rolling”
26th Feb ’13 DSN Appointment Day
The ball starts rolling… with me basically showing (again) why I needed a pump, backed it up with my hand written diaries. This was enough for her to apply for funding. In the lead DSN words “all being well I will be on a pump within 3 months.. ”
I remember those words to this day. They’re etched into my hypo damaged flakey memory. Boy was I excited! I couldn’t wait to get pumping and left the clinic walking on air. Over the following months I dug out my two diabetic bibles. The before mentioned Thinking Like A Pancreas plus “Pumping Insulin” by John Walsh and Ruth Roberts I re-read them through. Twice. Yep I was keen 🙂
Unknown to me, the Lead DSN, had fell ill, and was on extended sick leave. This was bad news as Kate was the only DSN dealing with pump training in my D team so now was also snowed under with additional work. Unfortunately at the same time my hospital Trust changed from being funded via a PCT to a CCG. The pump application seemed to fall through a hole in the floor. I heard nothing I knew nothing.
My keenness was wearing off.
July 29th ’13 DSN Contact
At last I managed to get to see Kate, she explained why things had been delayed. But it was practically 6 months since there was any pump news. I was so so pissed off, especially after being so excited then waiting on THE magic email. All the effort…it was for nothing. I wanted to throw all my toys out of the pram (including action man! ) It wasn’t her fault. I left gutted and feeling as though I was of no concern. To anyone. No one else understood what I was going through. I was alone… All ALONE…. (think Donkey in Shrek !! )
15th August ’13 IPro2 CGM
There was good news Kate fitted me up with an Ipro2 blind CGM sensor for a week. Awesome. Then disaster again. I went back to get the sensor removed and the data downloaded only to be met with one of the other DSNs who told me that Kate had slipped over and cracked a rib. No of course she didn’t have access to the sensor download programme. Two weeks passed and Kate was back.
When we got the data back I was shocked! I was hypo overnight nearly every night in fact, 5 out of the 6 days the sensor was running! for Hours!! Proof again of my lack of hypo-awareness.
I was loaned a RT Guardian System. Ok things were looking up. I had it for a month then. I couldn’t afford to self fund the medtronic since it was almost twice the price of the G4 system. Typically the Trust only used Medtronic Veo’s.
I made contact with Medtronic for more info and started to go to the JDRF discovery days. Holy shit 😮 there were other type 1 diabetics in the world (it didn’t occur to me I had sat next to them in my clinics for the last 35 odd years) I had always thought that I was a crap diabetic with crap control and I was unique. Everyone else was toeing the diabetic line apart from me I had no one else I could compare myself to doh!
4th October Dexcom G4
I was now the very proud owner of a dexcom G4 CGM. I was self-funding but worth every penny spent on it. I will try to do a blog post on my experience with the G4 in the near future and compare it with the loaned Guardian system.
12th November ’13
Good News: There was now a pump choice for me, the medtronic Veo or an Animas Vibe. Bad news I had a day (!) yup a day to make my choice. I picked out the Medtronic Veo as I so hypo unaware and it had the Thresh hold suspend feature. But as I drove home I changed my mind I wanted the Vibe! This didn’t go down too well since the clinic only had experience with the Veo. Kate said I would be the first person in the Trust to have a Vibe.
No sign of “my pump” I kept on badgering, I even contacted the hospital PALS service to ask for more DSNs for the Diabetes outpatient clinic and for more trained pump nurses
19 th December ’13 Approval
I had an email “your pump approval from the CCG has come in” !!! but… they were now waiting for an order number for my medtronic Veo from the CCG . Eh??? WhaaaaAa? I replied to the email I had chosen the Vibe!! fffFFffffSSSsssSS!! Kate “should be ok but I need to get back to the CCG” I was Gutted. After all the contact I was nothing but a number.
6th January ’14
I emailed the Animas Rep for my area to find out how long a pump took to be delivered once an order from the hospital went in I got a reply that a pump had just been issued to my hospital. but as it wasnt for me I WAS NOT A HAPPY CHAPPY. I was now thinking that “My Pump” had been issued to someone else. After all I was first in the line 😦
Yup was I down in the dumps, even depressed about it all. I had become obsessed with checking my email account for any news from Kate. Hell, I even selected a “Special Tone” on my phone so I would know straight away if there any new emails from her with news.
7th January ’14 #doc
I had a look online to try find out if I was depressed and went back to INPUT.. I saw a few links to uk d blogs, Read them through, took a very deep breath and signed up to twitter. Another HOLY SHIT moment. I was not unque there were people out there in exactly the same boat as me, and I could relate to them. I found out there were online self-help depression courses available ( Thankyou thankyou @ninjabetic1 ) I discovered the #gbdoc and #ourD communities. In a matter of just one week my small world had changed to a very big one.
6th March ’14 CCG
I had a go at some poor administrator on the phone at my CCG. In the afternoon after the “CCG chat” I phoned my clinic, hey presto, they have had an order number emailed through and will be ordering my pump.. Coincidence perhaps but I didn’t care, a few weeks and I would be pumping… lol yeah right I had heard that before. I also found out that the pump had been ordered as an individual request, just like a special request for an omnipod and this was why it had been a nightmare for me.
Tuesday 28th April ’14
Ok so it’s now nearly 2 months since the order would’ve been placed. I emailed Kate and now I have been asked , finally, to go in for my pre pump appointment … (and no the pump hasn’t arrived). GrrrRRr. Keep cool Al. Keep cool.
6 May ’14
Pre Pump Appointment day 😮
to be continued
So that’s my little tale.so far, of seeking approval for an Insulin Pump. If you too are thinking of applying make sure the very first thing you do is change to a pump friendly clinic.. I didn’t. I kept the faith in my clinic and here I am still no pump after 18 months of finger twiddling and frustration.
Thankyou for reading and getting down to here!!