By request of the European Parliament: The European Code of Good Practice in Multiple Sclerosis

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By request of the European Parliament The
European Code of Good Practice in Multiple
Sclerosis its recommendations for therapy and
care
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A CODE driven by a patient plightA true story of
success
"There are hundreds of thousands of MS sufferers
in the UK and across Europe who are finding life
a lot harder than me but I am a strong person and
fight hard to get what I should rightfully
receive, while others are not in a position to be
like this
Louise McVay before the Committee on Petitions,
European Parliament July 2003

• The fight of a courageous British young lady with
  MS insisting on her right as European citizen for
  the best possible therapy, found strong support
  from the EMSP, the Petition Committee of the
  European Parliament and finally the European
  Parliament

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WHY WAS SUCH EU REPORT ON THE SITUATION OF MS IN
EUROPE NEEDED?
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Access to treatments therapies
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• Official presentation of the First EU Report
  on MS

18th December 2003, EU Parliament Straßbourg
Results
Uptake of the MS Report by 240 MEPs in the
European Parliament (Petition 842/2001)
concerning the effects of discriminatory
treatment towards persons with MS, within the
European Union (2003/2173 (INI))
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• Key points of the EU Report

• Description of good practice in four key areas
  being critical for PwMS, their families and their
  carers
• Equal rights and access to therapies and services
  
• A shared agenda in MS research throughout Europe
• Employment and job retention
• Consultation and empowerment for PwMS

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Structure of the CODE of Good Practice ?
requested by the European Parliament

• A political statement reflecting state of the
  art practice outlined in the following
  documents
• Disease modifying therapies (e.g. Interferons)
• Symptomatic treatments (e.g. against bladder
  problems)
• Rehabilitation
• Palliative Care
• Principles of QoL (developed by MSIF)
• Supported by epidemiology facts and figures
  available on an interactive internet database
  (www.europeanmapofms.org )

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What is the purpose of our CODE of Good Practice?

• A political instrument outlining the issues of
  fundamental importance to people affected by MS
• Provides a framework describing
• The optimal approach in relation to treatments
  therapies and services, research, employment and
  empowerment of people with MS (PwMS)
• Sign posts core reference documents and materials
• Commits national governments and the European
  Commission to an independent monitoring system
  that will feed into the public health system

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• The method of development of the European Code
  of Good Practice in MS

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Reference documents for national campaigning

• Code of Good Practice
• Consensus Papers
• MS Barometer
• Map of MS

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WHAT HAPPENS ON NATIONAL LEVEL?

• Translation of the Code in to (so far) 14
  languages
• Support of national actions by the PR TOOLKIT
  developed by EMSP
• and by the European Map of MS (www.europeanmapofm
  s.org)
• High Level National Roundtables with
  stakeholders and decision
• makers addressing the priority needs of PwMS
  as identified by
• the national MS Societies in Slovenia, Hungary,
  Bulgaria, Lithuania
• (France, Estonia, UK and Poland to follow in
  2010)
• Contribution by national experts to review and
  update of CODE
• and Consensus Papers being coordinated by EMSP

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Pocket Guide to the CODE
For dissemination targeted to all suitable
decision makers and multipliers in national
health care- and social security bodies
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Thank you!
Dorothea Pitschnau-Michel President European MS
Platform emsp_at_emsp.org www.ms-in-europe.org