My Superhero loving daughter was kidnapped and replaced with someone wearing pink , frilly socks and a plait in her hair, I was privileged today !
Those of you that have regular trips to hospital appointments will be aware of the post appointment clinic letter. These letters usually arrive 3 weeks after the consultation, you're cc into the letter that is primarily for your GP or other specialists involved in your care.
So Eloise's Bristol letters go to our GP and her GOSH consultant and then of course her GOSH letters go to GP and Bristol consultant. The GOSH letters used to enjoy a little trip to India to be typed at one point. I remember a particularly vile patronising transplant nurse telling me so "Mrs Allen you must remember we are busy and our letters are typed in India " Mrs Allen failed to comprehend this and remained cross that a letter telling her her child needed to start antihypertensive medication took 8 weeks to arrive !
Also these letters never seem to make it into your notes very swiftly as in you go to your next shared clinic appointment and the letter from a clinic three months previously hadn't been filed , where is it ?
Now this brings me to my latest experience with said clinic letter. On the 11th of June Eloise was seen in Bristol, she had an ECG and an Echo and saw her consultant Dr M. After Eloise's echo the technician got it checked by another tech, they seemed concerned, stopped engaging with us and started that whispering . Well what does that do to you ? For me my stomach knots, I feel sick, faint and cold. Eventually Dr M came back from seeing an emergency patient and said he was happy with the scan, phew, relief floods through me once more. I become chatty again , the World is a good place, my child is ok. Fast forward 3.5 weeks the clinic letter drops through the letter box on Friday......
I read it getting to the part about the echo. There in black and white "septal motion abnormal " What !!!! They said everything was ok, abnormal isn't ok , well it's not normal ! Fear floods in again. I do what I tell others not to do I google, getting nowhere reassuring ! 
It doesn't make sense why tell me everything's ok and then send me this ? I go from reassuring myself that if it's something major wouldn't it have been dealt with already to that's it no holiday they'll admit her more tests . I think why has she got this problem now, is it her new medication Ivabradine that lowers her heart rate. Maybe this is an electrical problem....yes that's it they'll tweak her medication she'll be fine. Another problem was also mentioned but that made even less sense to me.
So there we are 5 days and nights followed, anxiety levels fluctuating from being totally ok to doom and gloom. Couldn't think ahead , couldn't look forward to our holiday, or even going out the next day. Everything like that lost it's shine. Scary how quickly that happens when things aren't "right" with your child.
Couldn't eat breakfast this morning but managed a hot chocolate and ginger snaps on the train, they swirled around in my protesting tummy. Levels of fear increasing as we got nearer to having the dreaded echo. How happy was I that a lovely friendly lady called her in. This makes such a difference some of the GOSH techs aren't great in the communication department. I was glad when the echo was over, she didn't ask for another opinion ( great ) she didn't call for a Dr ( marvellous ) phew ! Thought of rummaging through the notes on the way back to clinic but resisted !
Then it was time to see Dr F I was glad it was him, I trust him, I like his approach and his honesty. He was smiling away, everything looked fantastic, great ECG voltages higher than they have been for quite a while, stable echo with no increase in fluid good function. So I showed him the clinic letter, he then popped Eloise's echo up on his screen checking for the problem Bristol had seen it wasn't there. Phew, he said even if it was a flattened septum is common in transplant patients .He also reassured me regarding the other problem.
Next time I'm worried I must ring him, he insisted that I ring his secretary and leave a message and he'll get back to me. I know if clinic had been ages away I would have rung. I'd already scanned and sent an ECG to them from the 11th June as I was worried.
So there we are the clinic letter, it's designed as Dr to Dr correspondence it can be too complicated for us to understand ( and I'm a nurse ) yet we get sent it. How often have you wondered what it all means and been concerned ? Yet if we don't receive a copy it can sometimes be hard to get new prescriptions or treatments as the Drs seem to not have the letters infront of them when you visit, a delay in filing them. A tricky situation indeed.
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