the European perspective

Stroke Stroke helpline helpline 0845 0845 3033 3033 100 100

Website Website www.stroke.org.uk www.stroke.org.uk

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

Stroke helpline 0845 3033 100

Website www.stroke.org.uk

Stroke Alliance for Europe Stroke Stroke helpline helpline 0845 0845 3033 3033 100 100

Website Website www.stroke.org.uk www.stroke.org.uk

SAFE Membership 2010 Austria

Hungary

Slovenia

Belgium

Iceland

Spain

Catalonia

Israel

Sweden

Czech Republic

Italy

The Stroke Association

Finland

Netherlands

Different Strokes UK Connect

France

Norway Croatia

Germany

Stroke Stroke helpline helpline 0845 0845 3033 3033 100 100

Poland

Website Website www.stroke.org.uk www.stroke.org.uk

Ukraine

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 Stroke helpline helpline 0845 0845 3033 3033 100 100

Website Website www.stroke.org.uk 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 Stroke helpline helpline 0845 0845 3033 3033 100 100

Website Website www.stroke.org.uk 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 Stroke helpline helpline 0845 0845 3033 3033 100 100

Website Website www.stroke.org.uk 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 Stroke helpline helpline 0845 0845 3033 3033 100 100

Website Website www.stroke.org.uk www.stroke.org.uk

Stroke Stroke helpline helpline 0845 0845 3033 3033 100 100

Website Website www.stroke.org.uk 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 Stroke helpline helpline 0845 0845 3033 3033 100 100

Website Website www.stroke.org.uk 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 Stroke helpline helpline 0845 0845 3033 3033 100 100

Website Website www.stroke.org.uk 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 Stroke helpline helpline 0845 0845 3033 3033 100 100

Website Website www.stroke.org.uk www.stroke.org.uk

Stroke Stroke helpline helpline 0845 0845 3033 3033 100 100

Website Website www.stroke.org.uk www.stroke.org.uk

SAFE Membership 2010 Austria

Hungary

Slovenia

Belgium

Iceland

Spain

Catalonia

Israel

Sweden

Czech Republic

Italy

The Stroke Association

Finland

Netherlands

Different Strokes UK Connect

France

Norway Croatia

Germany

Stroke Stroke helpline helpline 0845 0845 3033 3033 100 100

Poland

Website Website www.stroke.org.uk www.stroke.org.uk

Ukraine

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 Stroke helpline helpline 0845 0845 3033 3033 100 100

Website Website www.stroke.org.uk 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 Stroke helpline helpline 0845 0845 3033 3033 100 100

Website Website www.stroke.org.uk 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 Stroke helpline helpline 0845 0845 3033 3033 100 100

Website Website www.stroke.org.uk 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 Stroke helpline helpline 0845 0845 3033 3033 100 100

Website Website www.stroke.org.uk 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 Stroke helpline helpline 0845 0845 3033 3033 100 100

Website Website www.stroke.org.uk www.stroke.org.uk

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

Stroke Stroke helpline helpline 0845 0845 3033 3033 100 100

Website Website www.stroke.org.uk 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 Stroke helpline helpline 0845 0845 3033 3033 100 100

Website Website www.stroke.org.uk 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 Stroke helpline helpline 0845 0845 3033 3033 100 100

Website Website www.stroke.org.uk 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 Stroke helpline helpline 0845 0845 3033 3033 100 100

Website Website www.stroke.org.uk www.stroke.org.uk

Stroke Stroke helpline helpline 0845 0845 3033 3033 100 100

Website Website www.stroke.org.uk 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 Stroke helpline helpline 0845 0845 3033 3033 100 100

Website Website www.stroke.org.uk www.stroke.org.uk

Together we are stronger

Stroke Alliance for Europe Stroke Stroke helpline helpline 0845 0845 3033 3033 100 100

Website Website Together we can improve things faster www.stroke.org.uk 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 Stroke helpline helpline 0845 0845 3033 3033 100 100

Website Website www.stroke.org.uk www.stroke.org.uk

The Stroke Association and Life After Stroke

Stroke helpline 0845 3033 100

Website www.stroke.org.uk