The road to a Pan-European Patient Survey

At a packed roundtable discussion in Brussels, on 9 December, representatives of MS societies and organisations from more than 20 countries reinforced the need for up-to-date information on the experiences of people affected by MS in Europe – which could be met through a Pan-European MS Patient Experience Survey.

Data from the MS Barometer and other surveys provides invaluable information about the national situation but this picture needs to be completed by testimonies on what living with MS means on day-by-day basis for people with the condition and their carers.

Contributors recognised the considerable challenges in obtaining a representative overview and the importance of making contact with hard-to-reach groups as well as those who are members of established organisations, but this is vital if we are to highlight unmet needs and to advocate effectively for the reduction of health inequalities known to be linked to MS and other neurodegenerative diseases.