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Self-Advocacy 101

Working with your doctor through self-advocacy put you back in control.

Working with your doctor through self-advocacy puts you back in control

I’m writing this post from the hospital day unit, everything’s fine. I’m just here to have my Multiple Sclerosis (MS) treatment changed,  it’s standard procedure to be under observation for your first dose. I had raised concerns with my doctor regarding my previous therapy as I was always unwell and had missed months of work. I won’t be naming the actual drug I was on, it just happened that I was unable to tolerate the drug in question. A common problem for me I’m afraid, I inherited that from my grandmother. I don’t want to cast any doubts or put people off specific treatments. Especially because patience is required when you are receiving treatment for an autoimmune disorder, it takes at least 6 months to determine if a medication is making a difference or not. Something I didn’t know when I was first diagnosed. What I do want to share in this post is how I approached the topic of changing meds with my specialist.

 

For non-urgent medical matters, I always arrange to see my GP first. Your General Practitioner is a vital part of your healthcare team and plays a central role to which all things are connected. Some of the outcomes I’ve seen from not initiating a conversation regarding issues with your treatment with a doctor can be:

A) Taking matters into your own hands and deciding to cease medication on your own.

This can be very dangerous, as by suddenly stopping certain drugs you can trigger a rebound effect, which causes a rapid worsening of the condition being treated. Please don’t ever do this.

B) You don’t alert your doctor to changes in your health which can be quickly alleviated or are of serious concern.

Here is how I engage with my treating team, this advice was given to me by my MS nurse (they’re angels!).

1. Make a list of things you want to discuss

As my memory is unreliable, I keep a list on hand of matters I want to discuss with my GP. I note things down as soon as something comes to mind, so I don’t forget. Yes, I’m that forgetful that I can fail to remember something significant. I see my GP first as she is like mission control and knows what to prioritise and what needs a referral. When I was first diagnosed, I used to book an appointment directly with my neurologist whenever something felt different. I was jumping at shadows, and he had little patience for me as there wasn’t actually anything wrong with me. Now I have an efficient system with my GP. I book a 30-minute appointment with her if I have more than one thing I want to discuss. A regular appointment is 15 minutes, if I don’t end up actually using the 30 minutes, she only bills me for the standard fee. Policies differ between practices and some charge the full amount even if you don’t use up the entire time, so please check your doctors booking policy first. By doing this, we are not pressured by time. I give her a quick rundown of my list, she picks out what the priorities should be, and we go from there. If it is something of concern she will notify my specialist and we make an appointment if need be. If we run out of time, she will suggest a time to see me next depending on the urgency of what is left on my list.

2. Have all the facts

Medicine is evidence based. Doctors want facts and things that can be observed and measured. My neurologist always asks me how I have been since he last saw me. If I go in and tell him things haven’t been going well, he wants to know how, what, when and for how long. If I cannot give him specific information, it ‘s hard to diagnose the problem. At my last appointment with my neurologist, I had my GP’s appointment notes and my own MS diary with dates that I keep. I also went in with a close family member who could confirm to what extent I had been unwell since the new treatment. My specialist only see’s me every 6 months. This person sees me every day. Even though my claims were subjective, I had evidence from a family member to back me up.

3. Be prepared

I also write down all the points I want to discuss during the appointment. This stops me from getting sidetracked and allows me to sit down and clearly think out what I want to say. Things to ask were, what other treatment options are available? What are the pros and cons of changing? From that discussion, my neurologist arranged a change in treatment, and here I am today.

I’ll update the blog with my progress in a future post. As I said It takes about 6 months before we can see any progress but I’m feeling optimistic.

 

Other tips to get the most out of your appointment

Tips to help prepare or a doctors appointment

Image courtesy of Pixabay

 

• Make sure your doctor answers all your questions.

• If something is unclear ask for clarification.

• If you have a bad memory, ask for information and the outcomes of the appointment in writing.

• Have a support person with you to help advocate on your behalf. They can also ask for clarification if you’re uncomfortable doing so and write down important points to help you remember.

• Ask where you can find a reliable source of information if you would like to know more

• What to do if you become unwell and what is the appropriate course of action depending on the severity.

• Arrange a follow-up if there are any unresolved issues.

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