stroke support, the european perspective
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Stroke helpline Website0845 3033 100 www.stroke.org.ukStroke helpline Website0845 3033 100 www.stroke.org.uk
Stroke helpline Website0845 3033 100 www.stroke.org.uk
Stroke Support, the European perspective
Jon Barrick WSO Board member, SAFE secretary
Stroke helpline Website0845 3033 100 www.stroke.org.ukStroke helpline Website0845 3033 100 www.stroke.org.uk
Stroke Alliance for Europe
Stroke helpline Website0845 3033 100 www.stroke.org.ukStroke helpline Website0845 3033 100 www.stroke.org.uk
SAFE Membership 2010
The Stroke Association
Austria
Belgium
Catalonia
Czech Republic
Finland
France
Germany
Hungary
Iceland
Israel
Italy
Netherlands
Norway
Poland
Slovenia
Sweden
Ukraine
Spain
Croatia
Different Strokes
UK Connect
Stroke helpline Website0845 3033 100 www.stroke.org.ukStroke helpline Website0845 3033 100 www.stroke.org.uk
What is the Stroke Alliance for Europe trying to achieve?
Our objectives/aims are outlined in our constitution.
1. To promote awareness and understanding of stroke;
• to promote prevention;
Stroke helpline Website0845 3033 100 www.stroke.org.ukStroke helpline Website0845 3033 100 www.stroke.org.uk
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;
•
Stroke helpline Website0845 3033 100 www.stroke.org.ukStroke helpline Website0845 3033 100 www.stroke.org.uk
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;
Stroke helpline Website0845 3033 100 www.stroke.org.ukStroke helpline Website0845 3033 100 www.stroke.org.uk
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.
Stroke helpline Website0845 3033 100 www.stroke.org.ukStroke helpline Website0845 3033 100 www.stroke.org.uk
Stroke helpline Website0845 3033 100 www.stroke.org.ukStroke helpline Website0845 3033 100 www.stroke.org.uk
SAFE
• European Stroke Awareness day second Tuesday in May each year• Further details on the SAFE
website: http://www.safestroke.org/
Stroke helpline Website0845 3033 100 www.stroke.org.ukStroke helpline Website0845 3033 100 www.stroke.org.uk
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
Stroke helpline Website0845 3033 100 www.stroke.org.ukStroke helpline Website0845 3033 100 www.stroke.org.uk
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
Stroke helpline Website0845 3033 100 www.stroke.org.ukStroke helpline Website0845 3033 100 www.stroke.org.uk
Stroke helpline Website0845 3033 100 www.stroke.org.ukStroke helpline Website0845 3033 100 www.stroke.org.uk
SAFE Membership 2010
The Stroke Association
Austria
Belgium
Catalonia
Czech Republic
Finland
France
Germany
Hungary
Iceland
Israel
Italy
Netherlands
Norway
Poland
Slovenia
Sweden
Ukraine
Spain
Croatia
Different Strokes
UK Connect
Stroke helpline Website0845 3033 100 www.stroke.org.ukStroke helpline Website0845 3033 100 www.stroke.org.uk
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
Stroke helpline Website0845 3033 100 www.stroke.org.ukStroke helpline Website0845 3033 100 www.stroke.org.uk
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
Stroke helpline Website0845 3033 100 www.stroke.org.ukStroke helpline Website0845 3033 100 www.stroke.org.uk
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
Stroke helpline Website0845 3033 100 www.stroke.org.ukStroke helpline Website0845 3033 100 www.stroke.org.uk
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.
Stroke helpline Website0845 3033 100 www.stroke.org.ukStroke helpline Website0845 3033 100 www.stroke.org.uk
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
Stroke helpline Website0845 3033 100 www.stroke.org.ukStroke helpline Website0845 3033 100 www.stroke.org.uk
European Community funded Stroke research• EIS, • European Stroke
Network, • EuroHYP• Wake Up
Stroke helpline Website0845 3033 100 www.stroke.org.ukStroke helpline Website0845 3033 100 www.stroke.org.uk
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
Stroke helpline Website0845 3033 100 www.stroke.org.ukStroke helpline Website0845 3033 100 www.stroke.org.uk
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
Stroke helpline Website0845 3033 100 www.stroke.org.ukStroke helpline Website0845 3033 100 www.stroke.org.uk
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.
Stroke helpline Website0845 3033 100 www.stroke.org.ukStroke helpline Website0845 3033 100 www.stroke.org.uk
Stroke helpline Website0845 3033 100 www.stroke.org.ukStroke helpline Website0845 3033 100 www.stroke.org.uk
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
Stroke helpline Website0845 3033 100 www.stroke.org.ukStroke helpline Website0845 3033 100 www.stroke.org.uk
Together we are stronger
Stroke Alliance for Europe Together we can improve things faster
Stroke helpline Website0845 3033 100 www.stroke.org.ukStroke helpline Website0845 3033 100 www.stroke.org.uk
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?
Stroke helpline Website0845 3033 100 www.stroke.org.uk
The Stroke Association and Life After Stroke
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