1. Stroke helplineWebsite 0845 3033 100www.stroke.org.uk Stroke helplineWebsite 0845 3033 100www.stroke.org.uk

2. Stroke helplineWebsite 0845 3033 100www.stroke.org.uk Attaining the vision of Safe SAFE working conference Ljubljana November 2010 Jon Barrick

3. Stroke helplineWebsite 0845 3033 100www.stroke.org.uk Stroke helplineWebsite 0845 3033 100www.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;

4. Stroke helplineWebsite 0845 3033 100www.stroke.org.uk Stroke helplineWebsite 0845 3033 100www.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;

5. Stroke helplineWebsite 0845 3033 100www.stroke.org.uk Stroke helplineWebsite 0845 3033 100www.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;

6. Stroke helplineWebsite 0845 3033 100www.stroke.org.uk Stroke helplineWebsite 0845 3033 100www.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.

7. Stroke helplineWebsite 0845 3033 100www.stroke.org.uk Stroke helplineWebsite 0845 3033 100www.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

8. Stroke helplineWebsite 0845 3033 100www.stroke.org.uk Stroke helplineWebsite 0845 3033 100www.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

9. Stroke helplineWebsite 0845 3033 100www.stroke.org.uk Stroke helplineWebsite 0845 3033 100www.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

10. Stroke helplineWebsite 0845 3033 100www.stroke.org.uk Stroke helplineWebsite 0845 3033 100www.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 that we continue to grow stroke survivor organisations in the rest of Europe.

11. Stroke helplineWebsite 0845 3033 100www.stroke.org.uk Stroke helplineWebsite 0845 3033 100www.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

12. Stroke helplineWebsite 0845 3033 100www.stroke.org.uk Stroke helplineWebsite 0845 3033 100www.stroke.org.uk Growing support and membership of your Stroke Support Organisation The more people you help, the more people identify with you, the more supporters you have the stronger we all are

13. Stroke helplineWebsite 0845 3033 100www.stroke.org.uk Stroke helplineWebsite 0845 3033 100www.stroke.org.uk So have clarity about what you want to do ; Need resources and plans Need supporters Do you want supporters to become members, is this an advantage?

14. Stroke helplineWebsite 0845 3033 100www.stroke.org.uk Stroke helplineWebsite 0845 3033 100www.stroke.org.uk Gaining Supporters Word of mouth Service provision recruitment Campaign activity Mutual benefit Direct marketing

15. Stroke helplineWebsite 0845 3033 100www.stroke.org.uk Stroke helplineWebsite 0845 3033 100www.stroke.org.uk Word of mouth Supporters recruiting other supporters Have to equip people with information, and means to link people to organisation Leaflets and web New digital technologies such as facebook

16. Stroke helplineWebsite 0845 3033 100www.stroke.org.uk Stroke helplineWebsite 0845 3033 100www.stroke.org.uk Service provision Provide services, people to be referred Nature of relationship must change from recipient to engaged user User (and family and carer) is then provided with ways to be more involved in organisation and its aims

17. Stroke helplineWebsite 0845 3033 100www.stroke.org.uk Stroke helplineWebsite 0845 3033 100www.stroke.org.uk Campaign activity Campaign publicly on an issue Specifically ask for others who care, to join in supporting the campaign Must have means to engage them Must have ways of bringing other things they could do to their attention, and mechanisms to action this.

18. Stroke helplineWebsite 0845 3033 100www.stroke.org.uk Stroke helplineWebsite 0845 3033 100www.stroke.org.uk Mutual benefit People support you, because you give them something in return. You solve a problem or advance their interests Negotiation and contracts Money, resources, positive publicity, access to markets, or gain in influence may be traded Consider this with other charities

19. Stroke helplineWebsite 0845 3033 100www.stroke.org.uk Stroke helplineWebsite 0845 3033 100www.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.

20. Stroke helplineWebsite 0845 3033 100www.stroke.org.uk Stroke helplineWebsite 0845 3033 100www.stroke.org.uk

21. Stroke helplineWebsite 0845 3033 100www.stroke.org.uk Stroke helplineWebsite 0845 3033 100www.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

22. Stroke helplineWebsite 0845 3033 100www.stroke.org.uk Stroke helplineWebsite 0845 3033 100www.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

23. Stroke helplineWebsite 0845 3033 100www.stroke.org.uk Stroke helplineWebsite 0845 3033 100www.stroke.org.uk Together we are stronger Together we can make things happen faster