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2013 EMSP Membership Satisfaction Survey: Positive feedback, increased support requested for national level initiatives



The EMSP Membership Satisfaction Survey 2013 collected data from 13 different member organisations regarding various parameters, such as their interaction with EMSP and their participation in EMSP’s projects and events.

The main purpose of this evaluation survey was to have feedback from our associations on their satisfaction level with EMSP’s work and initiatives and to take up any suggestions for future actions.



Focusing on the synergy between EMSP and the member organisations, the survey highlighted that we should widen our network to make new cross-borders contacts and create more opportunities for the different member associations to work together.

Support for national events

EMSP should support further members’ initiatives at national level by balancing its activities with representation or support to national initiatives. Over 50% of respondents reported that EMSP has not supported the organisation of national events during the two-year period 2012-2013.

Awareness on MS-related issues

Some member associations stated that their knowledge of MS-related issues has not significantly increased through EMSP’s work (over 30%). Therefore, we should enhance our efforts to boost awareness on such topics through a more efficient distribution of informative materials and the planning and running of specific workshops.

Although many respondents are satisfied with their relation with EMSP, some of them suggested that we put more focus on understanding MS-related issues specific for each country. Our members underlined that the national political and financial situation may effect negatively the development of their projects.

Support of advocacy initiatives

The survey also pointed out that member organisations seek support for advocacy initiatives for people with MS and, in this context, EMSP should reaffirm its commitment to ensuring equal access to treatments for people living with MS across Europe.

Quote from the survey: “It is important for us that EMSP supports our lobbying and advocacy actions for patients with MS” 

Moreover, a social approach based on access to pension funds aimed at improving the quality of life of people with MS should be promoted at international level.

EMSP should reinforce its collaboration with international institutions and strengthen its lobbying towards a high standard of treatment across Europe.

EMSP website

Quote from the survey: “Regular updates on key issues after Excom meetings”

While contacts with the EMSP and its Secretariat received positive feedback- over 46% of respondents asserted that contacts with the Secretariat were good during the course of different project – more attention should be given to the major external communication tool which is the EMSP website. Regular updates on key issues should appear on the website after important meetings. The website serves as the main interface between the EMSP and its member organisations and it should constantly be updated.

EMSP Secretariat

Quote from the survey: “The EMSP Secretariat could be more active in contacting participants from other countries during EMSP events”

Participation of people from different countries is strongly encouraged by the member associations: international participation at the EMSP events is a great opportunity to build new contacts for possible future collaborations.

Financial crisis and member associations

Quote from the survey: “Decrease of both public and private funding”

Member associations affirmed that the international economic crisis deeply affected their own financial situation. They asked for EMSP’s assistance in organising fundraising activities to supplement their budgets.

Art as a means of self-expression

Quote from the survey: “The Danish MS Society cooperated with the band CEONEO and singer Tamra Rosanes in a music project. Our members with MS were encouraged to write short poems about life with multiple sclerosis. The musicians then wrote a song using pieces taken from those poems. The song was recorded at two choir-workshops and all participants were people with multiple sclerosis. It was an event organised to give them the opportunity to meet up, share an experience and have some fun together.”

Another crucial point that the survey underlined is the role of art in MS treatments. Art helps to improve a person’s physical and emotional well-being and has been proved to have positive effects on people with multiple sclerosis. Most respondents asserted that several art projects have been implemented in their countries, involving mostly people with multiple sclerosis and their carers. Workshops including painting, drawing, music laboratories as well as theatre and dance courses represented an opportunity to improve specific skills and to meet other people who live with multiple sclerosis.

Projects and events

Participation in EMSP projects is high and member associations use these opportunities to share experiences on the implementation of such initiatives and to exploit networking opportunities and the development of potential projects at national level.

During such events, particular importance should be given to enhancing the dialogue and debates by accommodating network activities among the members of the different associations.


The 2013 survey proved to be a successful instrument for the member organisations to express their opinions and suggestions regarding the work of EMSP.

Quote from the survey: “The EMSP Secretariat has recently grown and gained a lot of new, energetic and kind forces”

This survey highlighted that the work of EMSP generally meets the expectations of the member associations. For example, the EMSP Secretariat has scored well in this survey in terms of availability (Almost 80%  of respondents rated as good), quality of advice (Over 50% of respondents rated as good), problem resolution (About 38% of respondents assessed as excellent) and understanding of the organisations’ needs (More than 30% respondents assessed as good).

However, there are still some aspects which can be improved.

Firstly, EMSP should boost its networking activities so that member organisations can get in touch with each other and share experiences regarding MS- related projects. EMSP should promote a more efficient and immediate communication among the different European associations – for example, by arranging special debates and discussions during EMSP’s events so that members can share experiences, exchange opinions and express suggestions.

Secondly, EMSP should improve its outreach through a more efficient use of social media. Over a third of respondents rated the use of social media as good, thus we should look to enhance the dissemination of informative materials through platforms – such as Facebook, Twitter or Youtube. These platforms may be an effective instrument especially when reaching out to young people and involving them in EMSP’s projects and events. Moreover, ensuring regular updates on such widespread means of communication will consolidate the role of EMSP as mediator between people with multiple sclerosis and the different member associations.

Thirdly, the Under Pressure toolkit should be better disseminated and presented – almost a quarter of respondents assessed the toolkit as not useful.

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