Something that has bothered me for so long is that when patients enter the medical system (ie they go to hospital/ they are ill/ they are diagnosed/ whatever stage they are on) they get bombarded with information. If you are like me, you will be in this place feeling horribly desperate and ill, being told so many different pieces of information, having so many procedures mentioned and I guess it seems that it is expected that EVERYTHING is soaked up, stored and processed. If you are like me, you probably won’t "soak up" much (if anything) during such times and remembering what I have been told is almost impossible! Also, as the years have passed, my ability to retain things has diminished quite substantially which is incredibly frustrating! – you can read about my "story" here.
So, along the way I have had some pretty horrendous experiences but something that has been consistent is the note taking that my mum has done from pretty much day one.
I am lucky that my Mum knew from other people’s experiences that we would benefit from taking notes from the very early days.
I guess that is the next point. Have a “consistent person” attend appointments with you. Someone that is able to speak out when required, make notes so you can focus solely on the information you need to give and receive and most importantly, someone who can stay calm and be a calming influence in stressful situations!
Take a puzzle book or colouring book or anything else that can occupy your mind for a long while. Remember that things that require batteries have a tendency to run out when you least want them to! I have been delayed by over 3 hours before for a consultation and believe me, it’s not fun if there’s nothing to do but stare at leaflets and walls!
Be prepared for a first consultation
- Write a brief medical history to give your consultant an outline should they ask.
- List your symptoms and why you are there to see the consultant. Have a rough time span if possible. Also list if there is anything that makes the symptoms worse/better.
- List your medication. Include doses and times taken.
- Be prepared to listen and have physical examinations carried out if needed.
- ALWAYS ask to be copied in to letters etc. It is your right and those letters can sometimes fill in the gaps that your note taker might have missed or answer questions that you forgot to ask!
This is an example of how I would type up the notes from the first meeting.
Header: (my initials) Hospital notes
Date: Consutlant: Department:
Notes from (consultant initials):
Next consultation: (just aproximately how many weeks/months when s/he wants to see you again). It's so you have a timescale.
Have a plan for future consultations
- Any unresolved issues from last consultation.
- How I have been since the last consultation. Is there any change or noticeable differences? Anything significant to note? (Did the consultant ask me to do anything in particular – give results)? – if there is another professional involved that needs cross referencing, do that here.... write it separately including the date you saw them so you can flick to your file if needs be... be prepared to in case the notes haven’t reached them yet!
- Questions and any immediate issues from this consultation
Set up a filing system for all of your letters
- Keep a record (in a file) of all of your consultations with EVERYONE involved in your care. It is not unusual for other people to come on board and different departments to cross over. I get by this by having a file with dividers in. One for each department or professional. I.e. GP, Neurologist, neurosurgeon etc.
- After every consultation write down your feelings and queries. I have only recently started to do this. After a series of “tricky” consultations, I started to get affected by the sheer thought of speaking to ANY medical professional. I didn’t sleep well, I started to get anxiety and I was just not “myself” before OR after for probably a week! I felt as though I was not being heard and that my feelings or wishes were not one bit taken into account. It was as if I was talking to a brick wall so I started to write down what I felt and that directly feeds into the prep for the next consultation. Also, part of the physical examination is having my eyes examined quite a lot. It is extremely hard to explain how that has affected me but imagine having someone that you have lost trust in being right...in...your...face. I promise you it does NOTHING for heightened anxiety. I used to await my appointment with dread and in my head it was totally irrational. I also felt confused and lost. This just had to stop and although I still get anxious, my stress levels are less and I am easier to live with since I started to have my own little reminders to feed into appointments or just realise that it was just head of the moment from the awkwardness of the day - on the day. I hope this makes sense. I guess it's just a way for you to personally document things and work out what you feel are the most imortant things to discuss because you have to remember that you can't possibly fit everything into a consultation all of the time.
- Correct any inaccuracies in letters! THIS IS IMPORTANT! Those hospital notes are the “book of you” that medical professionals get to read before seeing you. If they are wrong then you are not necessarily going to get the most accurate care!
My file is set up like this:
- First page: Important hospital numbers
- NEXT APPOINTMENT letter, plan,
- Dividers with departments on (including GP)
- Appointment letter,
- Consultant letter,
- Plan for next consultation.
I really hope that you have found this useful. I am still refining my "tools" but since I have been doing these I have felt more in control of myself and able to keep on track. I found that with every consultation I couldn't deal with all of the information that I was being told on top of my emotions. I used to say that it was easy for Doctors and medical staff because they can walk away. It's so wrong to tar everyone with the same brush. I have been cared for by so many amazing, positive people but it was just that one person seemed to be more "powerful" than others. Now I have a little bit of ownership of myself back. Ok, not medically but emotionally. There is only one person who can control that and that is ME!
I have learnt so many of the little tricks that I have mentioned by seeing chats and of course having conversations with people from the Ann Conroy Trust. They have really been incredible in providing a safety net of people going through very similar things and just a cosy little place where it's normal to be scared/worried/confused/everything in between!
Please read my post about The trust and if you'd like to win one of two hand crocheted Elephants that I have made, please go to my justgiving page and make a donation (all ts and cs are on there).
Thank you for all of the love and support.
Love and hugs.