This is going to be the one thing you don’t want to hear so I apologise. Adding to your increasing pile of things to worry about is the last thing you want me to do but I personally feel you need to do this. Let me explain and then you can decide for yourself.
Nearly a decade ago I nearly lost my husband to anaphylaxis. He went into hospital for back surgery. He had numerous surgeries prior so I wasn’t anymore worried than normal. This time though he had an extreme reaction to one of the drugs in the drip. So much so that they needed to jump start his heart twice and put him on a ventilator. It didn’t go down too well when I joked to the surgeon when he walked into my husbands private room to inform me there was a problem, when I said ‘you can’t have killed him already!’ Poor man didn’t know how to respond.
Now I didn’t get all the information I wanted during this process. I will quote the saying ‘one thinks they protest too much’ to describe how the parties were behaving. So I obtained a full copy of my husbands medical records; or as they claim they are. Scarily there were omissions for surgeries and incorrect entries for hospital stays. Goodness knows about the technical information; if this is correct or complete I have no idea. I haven’t time to put myself through medical school. Oh dear the thought of it. Nope. Can’t do that. I know they are busy but it is worrying when you expect them to have details that other people will use to make decisions about your treatment.
Trying to get these amend months after the event, we found is nigh on impossible unless you have concrete evidence. When we started this journey I decided that I wanted to make sure the information held in his records was correct or at least reflective of the conversations/details as we remembered them. Unfortunately they don’t take too kindly to you recording appointments and you can’t do so without prior consent: I have been advised. I wonder if ‘oh sorry I butt recorded you’ would stand up in court? Might have to try that.
I have a small folder, split into sections. One for each clinical department we are under. Each appointment letter is filed along with our copy of the letter that is forwarded to the GPs for their notes of the appointment. I take this with my to appointments. It tends to get a raised eyebrow when I make notes but it shows that I am not going to be a push over. It is also helpful as you can sometimes be overloaded with information. Now I am no PA with high level shorthand skills. I have my own version which I am sure would be useless to anyone else.
Now I have been put in awkward position in the past when making notes in a tribunal hearing when I made reference to a personal (and unladylike) view to person and was then asked to copy my notes to substantiate the claim process. Must remember to use more acceptable descriptions. Be a lady and make use of your GCSE English qualification. Keep the notes to the details and withhold personal observations. Trust me it is less embarrassing.
Please do not hesitate to respond to a letter if you feel the information it holds is incorrect. I have queried dates for blood tests and asked for results to be issued. I have refuted side effect information; adding a print out from the NHS website. They do not get to add to the notes that you said or stated something which you did not or was taken out of context. They love doing that. I am one of those really annoying people when I get a bee in my bonnet I won’t let things go. You do not get the right to put words into my mouth. Each letter to the consultant is also a letter forwarded to the GP. Tracked post or hand delivered so I can’t get the ‘oh sorry we didn’t get that.’
I hope that they will eventually realise I mean business. Do not twist things for your benefit. At this moment I can’t promise this will be beneficial but I would rather have comprehensive records of all our appointments so if something dire should happen they can’t brush it aside. Plus it also makes me feel a little better that I have all the information to hand and I don’t have to rely on memory as with so many appointments its hard to keep it clear. Better be safe than sorry E x