Every time i have an appointment at my local hospital (Swindon) there is always a letter sent about a month later outlining the conversation between me and the specialist, almost like when minutes are taken at a meeting!
I had a recent one following an appointment with the Onco last month (not my Onco but a locum who i had trouble understanding as she was Spanish). As I read through it I could feel my annoyance about what they put into words and what i actually said to them, it was as if the side effects that are plagueing me at the moment weren’t taken seriously. When i was telling her about how the neuropathy in my legs were getting worse and affecting me in many ways she described them as MILD!!! That was not what I said when I was there!
And when she referred to the fact that i am having checkups for an irregular heart rhythm as palpitations relating to hot flushes, well i thought i was going to self combust!!! They are nothing to do with hot flushes at all and i am seeing a Cardiologist next month for answers (there is a possibility that they are as a result of one of the drugs that make up the FEC part of my Chemo - I saw it explained on the Cancer Research UK websire and they listed a common side effect of the Epirubicin (the “E” part of FEC) as : Damage to the heart muscle (Irregular heartbeat) usually is temporary but in a few can be permanent and advise anyone affected like this in any way to see a Cardio. So when I do see them in august i have a notebook with things written down as and when i come across them so i don’t forget!
Hi I hope you are feeling well:) I sometimes get letters copied to me and sometimes not. I have requested to be copied in many times.
I had a similar thing to your onc letter - in a letter copied to me, my surgeon said I was “The very anxious sort”. Grrr. I was more than anxious at that, I tell you! Words like patronising g** came to mind. I think sometimes they forget we get copies.
I was anxious but he made it sound like I shouldn’t be - like I was some child overreacting to a wasp or something.
The breast unit at my hospital were brilliant about sending me copies of letters, but it’s been hit and miss from Oncology. I feel your frustration. It should be standard practise to send copies of letters - after all we are the patient, it is about us. I feel sometimes they can make you feel like you are not in control, especially when they write things like that. I haven’t had a bad experience like that , but in the last letter copy I received the doctor had written that I was well when I had clearly been talking about the effects of the side effects - so I was a bit peeved about that.
It might be worth expressing your concerns on your next visit that your side effects have not been recorded correctly in your records - they should be getting that right!
Hi Michelle, I also encountered a Spanish locum, I think it is the language barrier and their lack of recording skills. I’m rather apprehensive with foreign doctors. I’m certainly more comfortable with our British docs. But certainly you need to bring this up, as such big discrepancies in recording or note taking surely would not do the patients good.