Fibromyalgia Action UK
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Becoming an Expert Patient - article 1

This is the first in a series of articles on Becoming an Expert Patient that was originally published on the FibroAction website in 2008. When I get the time, I would like to update and complete the series, but in the meantime, I'll post them here for you to read, absorb and comment on.

In this series we will look at a number of topics that should help with any Fibromite's journey towards becoming an expert patient.

Topics covered will include:

1. Why Become an Expert Patient?

2. Knowing your Diagnosis

3. Dealing with Doctors

4. Medications and staying in control

5. Listening to your Body

6. Accessing treatments & therapies yourself

Why Become an Expert Patient?

* Expert patients are patients who are expert in their own condition and how it affects them.

* Patients are in charge of their own healthcare and have to make decisions, so it is good to be well informed.

* Expert patients have better health outcomes.

* Expert patients are more likely to take control of their health.

First of all, what is an expert patient?

An expert patient is a patient who is expert in their own condition and how it affects them. They do not need to be an expert in their condition as it may affect anyone, but are experts on their own bodies.

A patient expert is someone who is an expert on a subject, but also happens to be a patient, such as renowned author and Fibro and Myofascial Pain patient expert, Devin Starlanyl MD.

Why would anyone want or need to become an expert patient?

Well, however good your doctor is, they have one major disadvantage: they cannot be inside your body, feeling what you feel. Healthcare professionals in general, whether they are GPs, consultants, nurses or pharmacists, also see many different patients and they cannot always be concentrating on you. They cannot follow you around all day and check just how and when you take your medications and exercise. Only you know all this.

The other side to the argument for becoming an expert patient is that the patient is in charge of their own healthcare. In the UK, we have a history of thinking "doctor knows best", but even with the best doctor in the world, there wil come a time where you have to make decisions. Which hospital do you go to? Do you try this more effective medication even though the side effect risks are higher? Do you have this procedure or that? Do you assume your doctor is right or get a second opinion? Anyone receiving healthcare will have to make decisions at some point and if you are not informed, if you are not an expert patient, then this can be extremely difficult.

Expert patients are also known to have better health outcomes. They are more likely to follow a treatment regime, whether it's medications, exercise or lifestyle changes, because they will have had input into its choice and will have a better understanding of why the treatment was chosen. They are more likely to get accurate diagnoses as they do not sit quietly back and wait for something to be obvious to all. They are more likely to pick up on prescribing errors, both interactions between medications or conditions and genuine dispensing mistakes by a chemist. They also feel more in control of their health, making them less likely to suffer from depression and anxiety.

2 Replies

Great idea!

I'm sure we all often feel like we are 'telling our GP how to do their job' when we go to see them and go through the whole rigmarole of what we've done to alleviate our pain, etc, but as you say, WE are the only ones who know for certain what does and doesn't affect our individual conditions.

I'm so lucky to have a GP who looks on him & myself as a team in managing my Fibro - it makes it so much easier when I'm going through a bad patch.


A great idea, i am sure this will be very interesting & helpfull..looking forward to reading all of them, thanks for LindseyMid for your time & effort, much appreciated info.


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