Risk - a personal view
Open Door - November 2007 page 8
Risk touches all aspects of our lives. When we take out a new investment or insurance, organisations are obliged to set out the best and worse scenarios and what is and isn't covered. Why should decisions about our health be any different? The specific risks of new interventions or treatments - what they actually mean to us individually - are not always made clear.
I have recently had to decide whether or not to start disease modifying therapy and which of the four available drugs I should take. I got the feeling that, in the health professionals' eyes, there were certain boxes to be ticked, prescription criteria met and then the deed was done. There was no reference as to whether or not it was in my interest. At 44 years old, seven years post diagnosis, four relapses under my belt, what potentially are the advantages of starting treatment? What happens if I do nothing?
And which drug? Four manufacturer information packs understandably extolled the benefits of their product but had no direct reference to the risks of the treatment other than side effects details. Nothing that was specific to me.
The only thing I was told was that all four drugs are pretty similar and, at the end of the day, it comes down to quality of life and choices about frequency and type of injection, storage requirements etc. However, reading through the literature they are not all exactly the same and I wasn't told at any point if one would be more beneficial for me and why.
Having been told it is my choice, how do I go about making that decision? I looked at independent websites such as MS Decisions, logged on to chat rooms and read various booklets produced by the patient organisations. All of these are helpful in comparing the four products from a practical point of view but none of them refer to specific risks to me at this point in my disease course.
During the consultation about treatment options, I didn't specifically ask about risks. It was a stressful and emotional time but I am not sure that this is any justification for the doctor not raising the issue. It wasn't until afterwards that I thought logically about the decision I had made and came to the conclusion that it was not the right one. It wasn't till I sought a second opinion that treatment was discussed in the terms of the specific risk benefit ratio that related to me and my disease course. It became obvious that the choice was down to just two of the four products. At this point there was some justification for lifestyle considerations and a fallback position if I did not respond to treatment.
I hope by reading the following article you gain a better understanding of what risk means in the context of health. It is not always a scary thing - there quite often is not a right and wrong answer to a particular course of treatment or intervention - but it helps us understand and manage our expectations of what may be achievable.
Finally I hope it will help you ask questions of less forthcoming health professionals who maybe don't address the issue of risk because they are concerned about how well it will be understood, don't want to worry people or perhaps don't fully understand it themselves.
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