I decided to give our local hospital one more chance as it's a 1 hour 30 minutes drive to Leeds and when you have 5 children to take into account it becomes difficult.
Leeds is amazing they actually listen and support.
Last Thursday I arrived at the hospital (no Claudia as the DSN said she didn't need to attend), it should have just been a chat about the Constant Glucose Sensor.
The last time I had seen the Consultant was February 2010 as she has been off sick.
I had sent her several days earlier,the password to our Medtronic account so she could just print up the reports that she wanted, thoughtful I thought on my behalf. She complained, she had to print a lot of reports as she didn't know which she needed. I was shocked and apologised. Why do consultants make you do that!! She should know the reports inside out, it's her job!
Then we got on to the subject of: In her opinion that Claudia was not a priority. Yes here it comes, she was concerned we were not using the CGM properly and that it may make matters worse!!! To me it's simplistic you insert it for a period of 6 days and adjust insulin etc from the reports you get. It is calibrated twice a day. It alarms. This is from the same consultant that said "the pump would not improve Claudia's quality of life"
I said pardon, Claudia is sleeping, more relaxed, school love it. I am sleeping at night, the other children are not disturbed the same during the night, it's made adjusting insulin more logical, we have reduced hypo's, in my humble opinion that's a hell of an achievement for something the size of a 50 pence piece.
I said I do not want to go through another 8 months of hell again. She said it was just a blip!! My thoughts 8 months is a long blip!
Although she hasn't seen Claudia in 12 months according to the consultant " the dizziness that Claudia experiences when her levels rise is not dizziness(suggesting Claudia is making it up). How can she say that!
She was concerned about Claudia! What she has always had an excellent Hba1c and since we have had the sensor things have never been so good.
She thought Claudia was snacking too much! Claudia is the perfect weight for her height, they are healthy snacks(most of the time te he!)
She asked why Claudia was not with me. I said I spoke to the DSN and she said it was just a chat about the CGM so Claudia didn't need to come. Well, if that's what you are saying I will have to believe you ! I was stunned, in nearly 3 years we have never missed an appointment. We have only ever cancelled 1.
Then she said it was her letter that got the CGM, well that was it, I lost my cool. I told her straight her letter wasn't even read at the appeal, it never got there!! It was Donald and I that won the appeal with all the evidence we presented. She said " that was the PCT's internal system that was to blame. I said just a minute you just said that it was your letter that ot us the CGM, it is clearly not the case, so you were not being honest. No answer (busted)
This was me on auto rant:
Why do you give conflicting advice ? No answer.
You don't know Claudia!
What's wrong with healthy snacking? No answer.
Why do you not know which reports you should use? No answer.
If it is working for our family, why isn't she supporting us? No answer.
Then I got very very very honest and said " you are a disgrace to the service, you are unprofessional, Claudia and I don't like you and we are never coming back.
She said I think we should end this consultation. I said "I haven't finished yet"
I left and went to PALs to log my complaint.
I am fed up of them "nit picking" when we try so hard and provide excellent care.
Was I wrong to speak my mind?
We are at Leeds tomorrow, thankgoodness.