stroke helplinewebsite 0845 3033 100 stroke helplinewebsite 0845 3033 100

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 Alliance for Europe

SAFE Membership 2010

The Stroke Association

Austria

Belgium

Catalonia

Czech Republic

Finland

France

Germany

Hungary

Iceland

Israel

Netherlands

Norway

Poland

Slovenia

Sweden

Ukraine

Croatia

Different Strokes

UK Connect

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;

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;

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;

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.

• European Stroke Awareness day second Tuesday in May each year

• Further details on the SAFE website: http://www.safestroke.org/

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

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

SAFE Membership 2010

The Stroke Association

Austria

Belgium

Catalonia

Czech Republic

Finland

France

Germany

Hungary

Iceland

Israel

Netherlands

Norway

Poland

Slovenia

Sweden

Ukraine

Croatia

Different Strokes

UK Connect

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

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

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

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.

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

European Community funded Stroke research• EIS, • European Stroke

Network, • EuroHYP• Wake Up

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

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

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.

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

Together we are stronger

Stroke Alliance for Europe Together we can improve things faster

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

stroke helplinewebsite 0845 3033 100 stroke helplinewebsite 0845 3033 100

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