Action Plan based on the recommendations of the workshop held
on October 20 – 22, 2000 in London

Objective I : Lobbying and Awareness Raising

Background to the objective

Although most of the relevant legislation in the health field is in the competence of the national governments, European legislation gains more and more importance in many areas of interest for PwMS.

EMSP is seen as best placed to directly influence the shaping and the implementation of this European legislation with relevance to PwMS. Furthermore, support for lobby work done at a national level by the MS-Societies should be provided by EMSP where ever possible.

Activities:

Propose, monitor and enforce adequate guidelines and legal framework aiming at the improvement of the quality of life of people with MS
a) directly ( by legislation or measures having an immediate effect on the life of PwMS, e.g. in the field of mobility by the “European Directive on Buses and Coaches”) or
b) indirectly (by legislation or measures having an effect on patient advocacy groups such as the MS Societies and /or EMSP )
Raise awareness on the specific problems of PwMS both among the representatives of relevant European public bodies (European Commission, European Parliament, Council of Europe) and private organisations (European Disability Forum (EDF), European Citizen Action Service (ECAS), European Pharmaceutical Industry and Associations (EFPIA), European Federation of Neurological Associations (EFNA) and others
How the objectives will be achieved:

Monitor and analyse policy developments in all areas affecting the work of MS-Societies
Drafting of policy documents and active lobbying of relevant European institutions
Sharing and co-ordinating lobby aspects with like-minded (international) organisations
Ensuring that lobbying aims and plans are accepted & supported at the level of EMSP members
Maintaining an active dialogue with the Commission, the Parliament, the Council of Ministers, the Council of Europe and the pharmaceutical industry
In order to achieve any of the lobbying goals, EMSP needs to have a profile and rely on visibility on European level. Both can be achieved through:

Publication of policy documents and research papers
Publication of newsletters and web-documents
Commentaries in non-EMSP publications
Organising European seminars and conferences through which ideas can be collected and formulated
Involve the EMSP members in all lobbying efforts
Increase the number of EMSP members in order to be able to speak on behalf of a vast majority of PwMS in Europe as a geographical unit
How success will be measured:

Lobbying goals are very difficult to benchmark. Proposed are the following:
Ensuring by personal well prepared visits within the next 12 months that all members of the “Disability Intergroup” of the European Parliament are aware of the work of EMSP and its members
Establish a network of 10 other MEPs in influential positions within the next 12 months who are well informed about MS related problems and our work to fight them
Participate actively in all EFPIA Think Tank meetings and keep the EMSP members informed about the work done there
Participate actively in the lobbying efforts organised by EDF where ever possible and of interest for PwMS
Set up an information event on current MS related issues once minimum once a year and invite all relevant MEPs, officers of the relevant Directorates in the Commission, the EMEA and sponsors and donors of EMSP

Objective II: Facilitating Pan-European Projects (both funded and non-funded)

Background to the objective:

Promoting cross-border co-operation between members is a major reason for the existence of EMSP. Learning from each other by working together through a Pan-European project means that several members agree to invest time, labour and maybe funds to reach a defined result by common work for a limited period of time.

The European Commission regularly invites European project proposals financially supported by them. Subjects of interest for Ms-Societies and PwMS can vary from “Non-discrimination of disabled” to “Internet based communication, -learning and –trade”, from “Voluntary service in the social sector” to the “Further development of civic society issues in the emerging countries of Central-and Eastern Europe”, from “Research in the field of degenerative and chronic diseases” to “2003 – European Year of the Disabled Citizens”, to name just a few subjects.

Beside these opportunities for funded European projects there is both need and opportunity for non-funded European or multilateral projects, e.g. the study / questionaire of EFPIA on “Access to new medicines in Europe done in winter 2000/2001. Both types of projects require
– sufficient information on time
– some guidance and co-ordination
which EMSP will provide. However, responsiveness and a willingness by members to take on work additional to the regular domestic issues is vital for the success of such cross-border projects.

How the objective will be achieved:

EMSP

monitors the relevant bulletins and websites on EU-funded Action programmes inviting for projects relevant for PwMS
disseminates information on such opportunities via newsletter, website, special meetings and direct mail to members for further action on their side
provides support (contacts, forms, further information) on request
suggests a minimum of one major EU-funded project per year with detailed background information
promotes skills-share among members
How success will be measured

EMSP intends to

facilitate a European funded project once every two years
facilitate one non-funded European/multilateral project once a year
check the satisfaction of its members with the information provided on European project opportunities once every year

Objective III : Providing information both from internal and external sources

Background to the objective:

EMSP shall provide useful Information on all issues of relevance for MS-Societies and their members, which are

carefully selected through the eyes of the potential user
made “digestible” by summary when necessary
disseminated early enough to allow appropriate time for (re)action
How the objective will be achieved:

Procuring of information

by written information material from external sources such as bulletins of the European Commission or Parliament, newsletters from other pan-european organisations such as EDF, ECAS, EFNA, EFPIA, Alzheimer Europe, Inclusion Europe etc
by oral information during external conferences, seminars, visits etc.
by written material or oral information coming from internal sources (EMSP members, partner MS-Societies, IFMSS, RIMS, ECTRIMS)
Disseminating of information

by EMSP newsletter 3 –4 times a year
by direct mail (post mail, e-mail, fax)
by our website
by international conferences
How success will be measured:

check the overall satisfaction of EMSP members with the information provided once every year
ask for areas and ways of presentation which need improvement