the place of multiple sclerosis in the european union policy – the example of emsps ms barometer...
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The Place of Multiple Sclerosis in the European
Union Policy –the example of EMSP’s
MS Barometer 2008
Christoph Thalheim
Secretary General, European MS Platform
is the umbrella organisation of the predominant national MS-Societies in currently 34 European countries and represents more than half a million people with and more then 1,5 million people daily affected by MS (such as family and other care givers)
Contrary to other disease areas, people with Multiple Sclerosis in Europe are represented by only one European MS umbrella organisation.
What does EMSP do?
• Lobbying & Awareness Raising
• Facilitating Pan-European projects
• Providing information from both internal & external sources
• Austria• Belarus• Belgium• Bosnia-Herzegovina• Bulgaria• Croatia• Czech Republic• Denmark• Estonia• Finland• France• Germany• Greece• Hungary• Iceland• Ireland• Italy
Austria
Spain
Port
ugal
Iceland
Ireland UK
France
Belgium
Netherlands
Lux
GermanyPoland
Italy
Estonia
Latvia
Lithuania
FinlandSweden
Norway
Russia
Belarus
Switzerland
SlovakiaCzech R.
Greece
Malta
RomaniaBosnia-
Herzegovi
na
Serbia
Hungary
Croatia
Slovenia
Bulgaria
• Latvia• Lithuania• Luxembourg• Malta• Netherlands• Norway• Poland• Portugal• Romania• Russia• Serbia• Slovakia• Slovenia• Spain• Sweden• Switzerland• UK
accurate picture needed about the situation of people with MS across Europe
demonstrates the differences in how MS is managed between various countries
Why the MS Barometer?
What is the MS Barometer? a benchmarking tool
allowing us to make appropriate comparisons
peer review across Europe
permits identification of what aspects of the disease are well-managed
highlights in what areas national administrations need to improve their policies and practices
Structure of the Barometer→ Seven areas
Section 1: Access to treatment & therapies (19 Questions)
Section 2: Research (3 Questions)
Section 3: Employment (8 Questions)
Section 4: Empowerment (9 Questions)
Section 5: Reimbursement of Costs (11 Questions)
Section 6: Data Collection (5 Questions)
Section 7: Medication coming to the market (3 Questions)
→ Structure of the Barometer inspired by the European Code of Good Practice (1st four categories)
→ Extensive transnational consultation with the medical and patient communities to finalise content
The Barometer at a glance
→ 32 countries represented
→ Vast differences identified
→ Positive and negative aspects in each contribution
→ Maximum scoring of 270 points
MS Barometer 2008: overall results
Access to treatments & therapies
% PwMS receiving DMDs
PwMS receiving symptomatic treatment
PwMS receiving in-patient rehabilitation
PwMS receiving outpatient rehabilitation
Palliative Care programme available?
MS society having consultative status with the national administration?
Austria Bulgaria CyprusCzech Republic EstoniaGreeceHungaryIrelandLatviaLithuaniaMalta Poland Portugal Romania Spain Switzerland
Belgium Bosnia-Herzegovina Croatia Denmark Finland France Germany Iceland Italy Luxembourg Netherlands Norway Slovakia Slovenia Sweden UK
Healthcare Expenditure as % of GDP
Source: OECD figures for 2006
AND WHAT IS NEXT? MS BAROMETER 2009
• Revised version of the MS Barometer questionnaire has been launched in October 2009
• Results will be available at the end of the year
• To be shown on our website as of January 2010
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! Exercice will be repeated annually!
For further information, please visit:
www.ms-id.org/barometer2008
Thank you for your attention!
MS-ID project is co-funded under the Public Health Programme by the European Community
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