Time with my MS team is precious. I currently see them only once a year, unless I’m having a relapse. And during a year, a lot can happen. Plus, the clinic is always busy (my neurologist is very popular!) so I feel it’s important to maximise the time that I have with them. There are many ways of doing this, but the suggestions below are what I’ve developed and honed during the 11 years since my diagnosis.
Covering the logistics
I tend to become quite anxious when visiting hospitals. To help reduce this I make sure I plan my journey down to the most meticulous detail. Before I set out, I know where the most suitable parking places are, how much it will cost, whether I need the correct change or if I can pay with my mobile, and how long it will take me to walk from the car to the clinic.
I also make sure I know where in the hospital I need to go, especially because the neurology clinic sometimes moves from one part of the building to another. When I arrive at the clinic, the first thing I do is find out the wait time – if I need to increase the time I’ve booked for parking I will do it then. I don’t want to go to my appointment, worrying about whether my parking will run out!
If I’m having my annual MRI scan, I find it easier to be dressed appropriately (i.e. no metal and no make-up) rather than having to change into a hospital gown when I get there. Not only does it save time, but I feel more comfortable and am always much warmer in my own clothes.
Knowledge is power
Going into an appointment as someone who is knowledgeable about their condition and the options available to them can support conversations with the healthcare team. I make sure I know what the latest research is and I stay up to date about upcoming treatment options. Being informed also helps me to participate in shared decision-making with my healthcare team. “Nothing about me, without me” is my motto! If I have the knowledge, it makes this much easier.
Set objectives and ask questions
While it’s important for me to be informed, I also recognise that I won’t know and/or understand everything. Having a list of pre-prepared questions can help me to focus the appointment on what’s important to me and reduces the risk of me forgetting things.
If it’s appropriate, I’ll email the questions and what I’d like to discuss beforehand, including details of any other health conditions I might have developed or medications that I might be taking. It’s also important to set out objectives at the start of the appointment – ask your healthcare team what they’d like to discuss and tell them what you’d like to discuss.
If there’s not enough time during the appointment to cover everything, I ask for help to prioritise and see whether it’s possible to have a follow-up call or email conversation. Or, if it’s appropriate, I ask my healthcare team to signpost me to where I can find reliable information that would answer my questions.
Keep an MS diary
Many of us will only see our neurologists once or twice a year. For some of us it may even be less than that. I find it difficult to remember what I did last week, let alone trying to remember what happened several months ago! In the time between my clinic appointments, I keep a diary of things I think might be MS-related. There are lots of options available to make this easier, including various apps and symptom trackers. Of course, you could simply use a notepad!
Keeping a diary is also useful for tracking progression. On a day-to-day basis it might not be possible to tell if symptoms are worsening, however, if you track them over time it could tell a different story. I’ve found this particularly useful for monitoring fatigue and bladder symptoms but it can be equally helpful for any MS symptom.
Four ears are better than two
I never remember everything that is said to me during an appointment, so I find it helpful to take someone with me for a second pair of ears. Plus I ask them to make notes so that I can give my full attention on the discussions with my healthcare team. Usually I will take a member of my family, as they are familiar with my condition. I also feel it’s important for my healthcare team to get to know the people who support me at home.
Sometimes I’ve recorded appointments using a dictation machine or the recording app on my phone so that I can listen back when I’m at home. However, if I do record the conversation, I always ask permission from my neurologist first. I also find it helpful to repeat back to my healthcare team some of the information they have given to me, just to make sure that I’ve understood it correctly.
You might find some, or all of these tips helpful, but my biggest piece of advice would be to find what works for you and your team, so that you feel comfortable and supported when you visit them!
UK/MED/19/0168 July 2019