Backwards in coming forward : the reticence of those with mild relapsing remitting MS : users' perspectives of the new MS drugs and the MS Society

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This report addresses two questions: which factors influence people with relapsing remitting MS to come forward for new drug therapies?, and what do these group of people with MS want from an organisation such as the Multiple Sclerosis Society (MSS)? In addressing the first question, the authors discuss various discouraging factors proposed such as insufficient information, reluctance to self-inject and / or experience side-effects, problems with funding, lack of interest in reducing relapses and clinician inertia. They also include other previously unmentioned factors and a short section on the few participants who proactively pursued treatment. Discussion about the MSS only came about in relation to the provision of information. Most who had received this found it helpful. Participants in the study commented that the MSS should provide 'hard' information, such as information on clinical trials written in lay language. They also described the society as corporate and needing to become more user focused and grassroots oriented.

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