By Mehar Singh
You can listen to this blog post by following this link: https://open.spotify.com/episode/2AoA8GAeaRlzrgXUlPQlSf?si=4cfae8f3566a4a8b
Having chronic illnesses means we attend A LOT of medical appointments – with doctors, nurses, physiotherapists, mental health therapists etc. They can be daunting, draining and flat out exhausting, because we have to go through all of our conditions, symptoms, medications, allergies and any other relevant information. On top of that, we have to advocate for ourselves as best as we are able to and ensure the medical professional understands what we need/want and our communication is clear, as well as remember what was said during the appointment and what needs to be done next.
Personally, I used to struggle quite a bit with remembering all of my conditions, medications and allergies, and would forget which medical info would be useful where. I then realised I need to write it all down and continually update it so that nothing is left out.
This is when I created my ‘Health info’ document. Every time I have an appointment with someone new, the first thing I do is hand them this paper. It saves us all time, as the individual can read it all and ask any relevant questions and I don’t forget to mention anything important.
Name, DOB, address
Medications listed with dosage and how many times I take it – anything temp such as antibiotics are included with the duration and end date
All consultants names and speciality listed
Other info – such as a random treatment I received aged 8 and anything else I feel the doctors should know
Any surgeries/medical procedures done
Alongside this, depending on who I’m seeing and for what, I print out relevant clinic letters from certain doctors and test results that I think would be useful. This has been useful as the new doctor can see what has already been done, conclusions made and what they can now do which would take us further, instead of them redoing all tests and us starting from square one.
(Please note, if I think I need a entirely new opinion I would not include the clinic letters and results.)
Disclaimer: The following may take a long while before you get to a point where your doctors work off of the work you’ve done and presented. It is also important to listen to the doctor too because at the end of the day (the nice ones) they know what they’re doing and what tests to run and what the results mean !
As I spent many years being dismissed by my old GP surgery and some consultants, I learnt to do my own research based off symptoms and already diagnosed conditions. It is very important to realise what is suitable and applicable and what to ignore. Google can very easily tell you you’re dying or have a dangerous rare cancer. This is when it is necessary to realise that doesn’t apply to you, even if you have similar symptoms. Through this I would build a case and present it to my GP to begin with, and we would go through my symptoms, what research I have found and tests that apply and if she agrees we proceed. Luckily, I’ve learnt how to do this well enough and now do this with my consultants and we move past the basic testing and come up with conclusions much quicker.
I also created a document for each doctor called ‘appointments’ where I write down the notes for each appointment, the things I want to say and what was said during the appointment. This is very helpful but I have to admit I do forget to update them! Which is why I ensure I email the GP surgery or doctors assistant (harder to do with NHS consultants) and ask for emailed copies of all results and all clinic letters sent asap. Since I have learnt how to read my bloods well enough and 1 of my consultants has taught me what to look out for, all bloods I do with the GP I personally go over and ask the doctor about it and tell them that I think we need to check further.
One of the other important things I do, and have asked to do by my consultants, is track my daily blood pressure, heart rate, peak flow levels, O2 stats and, if needed, temperature and blood sugar levels. It can be hard to do this every single morning, but I’ve found it very helpful for over the phone appointments, especially in lockdown as I would have data to present to my doctor so they can have a possible picture in their head as to what my symptoms mean.
I previously made an Instagram post on this, with all the steps summarised for all my fellow chronic illness warriors! You can find this on my page @itscomplicated21
I will be doing an updated one soon.
I hope this was helpful to all my fellow chronic illness warriors.