EMSP’s Voice of MS patients survey was completed by 2,700 people living with multiple sclerosis (MS) in 33 countries across Europe.

The survey ran throughout 2015 and was published in October 2016.

We set out to find what are the real needs of people with MS? Our findings are included in the linked video.

A selection of engaging MS videos are available on our YouTube channel.

Voice of MS patients

Interested in more survey results?

1 in 5 do not work or study

Our survey showed that 31 percent of respondents work full-time and 17 percent working part-time. Furthermore, 24 percent are retired or on a pension and 18 percent are neither working nor studying.

1 in 3 do not get disability benefits

42 percent of our respondents said they have access to disability services and entitlements where they live. But 31 percent said they do not.

Either way, over 40 percent said these entitlements do not provide an adequate income.

4 in 10 get their information online 

40 percent of our respondents say they get their info online from sources such as support groups, health websites and social media. Only 35 percent indicated healthcare professionals as their information source.

Country comparisons

Our Voice of MS patients survey confirmed there are big differences in access to healthcare between Western and Eastern Europe.

Find a country comparison between 13 participant European states here.

Policy recommendations

We call to policymakers to consider the following patient-oriented solutions:

• Inform and educate MS patients so they can become co-deciders of their health;
• Ensure greater flexibility in social, disability and workplace policies related to MS patients;
• Recognise and support the roles of MS carers and MS nurses in the provision of care.

We also recommend our Our Code of Good Practice in MS which contains more relevant policy solutions.