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Stroke Support, the European perspective

Stroke Support, the European perspective. Jon Barrick WSO Board member, SAFE secretary. Stroke Alliance for Europe. SAFE Membership 2010. Austria. Hungary. Slovenia. Belgium. Iceland. Spain. Catalonia. Israel. Sweden. Czech Republic. Italy. The Stroke Association. Different Strokes.

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Stroke Support, the European perspective

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  1. Stroke Support, the European perspective Jon Barrick WSO Board member, SAFE secretary

  2. Stroke Alliance for Europe

  3. SAFE Membership 2010 Austria Hungary Slovenia Belgium Iceland Spain Catalonia Israel Sweden Czech Republic Italy The Stroke Association Different Strokes Finland Netherlands UK Connect France Norway Croatia Germany Poland Ukraine

  4. What is the Stroke Alliance for Europe trying to achieve? Our objectives/aims are outlined in our constitution. • To promote awareness and understanding of stroke; • to promote prevention;

  5. Objectives • to identify those at risk; • to improve access to appropriate treatment and care for persons affected by stroke; • to improve the quality of life of people affected by stroke and their families and carers;

  6. Objectives • to promote better access to accurate and understandable information about stroke; • to increase the priority given to stroke by policy and decision-makers and by health care providers;

  7. Objectives • to promote research on stroke and related areas; • to co-ordinate the efforts of national stroke patient groups in Europe. • to encourage the growth of stroke organisations reflecting the views of stroke survivors and their supporters.

  8. SAFE • European Stroke Awareness day second Tuesday in May each year • Further details on the SAFE website: http://www.safestroke.org/

  9. European level • Demand equality of action against strokes and their effects • To get stroke disease a decent share of the research budget • To lobby for prevention action • Ensure medical and social care programmes are run to the standards expected

  10. World Stroke Organisation • Affiliated to World Health Organisation • SAFE are members of the WSO • Run World Stroke Day, October 30 each year • Run World Stroke Congress every 2 years, now incorporating sections on growing stroke support organisations • www.world-stroke.org

  11. SAFE Membership 2010 Austria Hungary Slovenia Belgium Iceland Spain Catalonia Israel Sweden Czech Republic Italy The Stroke Association Different Strokes Finland Netherlands UK Connect France Norway Croatia Germany Poland Ukraine

  12. Most important thing is to have strong stroke patient organisations at local and National level • Local • Can provide support to stroke survivors and families • Can provide people to do things • Provide base for contact

  13. Most important thing is to have strong stroke patient organisations at local and National level • National • May be local/regional groups organised to do things at National level • Enable organised activity to change national laws and decisions • Provide base for contact

  14. Different Cultures in each country lead to different issues • Northern Scandinavian, State or National lottery funded • France, Balkans,Southern Europe , more regionally based self supported • Eastern Europe , no NGO tradition • Netherlands more similar to UK • Germany, company foundation

  15. More people involved, leads to more possibilities • Very important that we grow stroke survivor support organisations in Eastern Europe • But also important to continue growing stroke organisations in the rest of Europe.

  16. Now is the time • Patient organisations are required to be part of research • Patient organisations are increasingly seen as important to policy formulation • Patient organisations are seen as important source of ideas • Patient organisations are the conduit to “hard to reach” patients

  17. European Community funded Stroke research • EIS, • European Stroke Network, • EuroHYP • Wake Up

  18. We’ll support all stroke patient organisations • Whether in Beveridge health systems where health care is paid for from public taxation • Or in Bismarck systems where citizens have to buy their own insurance • Or in hybrids of the two

  19. Campaign activity • Campaign across Europe on an issue • Specifically ask for others who care, to join in supporting the campaign • Must have means to engage them

  20. Public relations work • Getting stories with a request for people to be supporters in local newspapers, national papers and magazines, TV and Radio. • Maintaining a website • Providing information to places where stroke surviors and their families read things with request for readers to be supporters.

  21. So over next 5 years.. • Want to see lobbying progressing at European level • Majority of European Countries with stroke survivor support organisations in place • Campaigning and awareness work at higher level in each country than it is now • Improvement in stroke care provision and standards • More support to help newly established organisations

  22. Together we are stronger Stroke Alliance for Europe Together we can improve things faster

  23. Questions • What can we do to strengthen stroke support organisations here in the UK? • And in Europe? • Should we have speaker from a sister European organisation here next year?

  24. The Stroke Association and Life After Stroke

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