Jane from the MS Trust information team explains how, with the help of people with MS and health professionals, we developed Making Sense of MS
Working in the MS Trust information team, I talk to lots of people who have just been diagnosed with MS. They call us with worries and questions. All too often, we talk to people who have been given very little information about MS or, sometimes, no information at all.
We began the Making Sense of MS project because we wanted to develop better resources for people who are diagnosed with MS, and reach them as soon as possible after diagnosis. We believe this can make a huge difference to how people adjust to life with MS and can help them make the decisions that are right for them.
We began back in 2012 by commissioning research into what information was (or would have been) most helpful around the time of diagnosis. We interviewed a wide range of people living with MS and they told us that, because everyone’s experience of MS is different, and everybody deals with it in different ways, any information we produced needed to be flexible. You should be able to choose as much or as little as you wanted, or needed, on any particular topic at any particular time. They also wanted information that was positive, practical, up to date and available in print and online.
The research was a great start but we needed to think about how to turn the results into good, well designed resource. So we held a workshop with people with MS and their families, health and social care professionals and designers of health information.
From these conversations we decided that everyone should be given essential, introductory information at the point of diagnosis and that further information should be available in a ‘pick-and-mix’ format so that people could choose what they needed. In the light of this, we developed Making Sense of MS as a small, discrete, introductory booklet and range of information sheets that people could look up and order at the time that’s right for them.
We’re proud that people living with MS have been involved throughout the whole project. You’ve filled in surveys, taken part in focus groups and interviews, responded to blogs, and reviewed the work in progress. You, your families and friends have raised the funds that have made the whole thing possible. You even helped us come up with a name the whole thing! Now that Making Sense of MS is published, many of you are helping us to spread the word.
We’re incredibly grateful for all your work and support. Thanks to you, we think Making Sense of MS will make a huge difference to the thousands of people who are diagnosed with MS every year, and to everyone who wants MS information that works for them.
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