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

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

What is the Stroke Alliance for Europe trying to achieve? Our objectives/aims are outlined 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 0845 3033 100 Website www. stroke. org. uk

Objectives • to identify those at risk; • to improve access to appropriate • 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 0845 3033 100 Website www. stroke. org. uk

Objectives • to promote better access to accurate • and understandable information about stroke; 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 0845 3033 100 Website www. stroke. org. uk

Objectives • to promote research on stroke and related • • areas; to co-ordinate 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 0845 3033 100 Website www. stroke. org. uk

Most important thing is to have strong stroke patient organisations at local and National 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 0845 3033 100 Website www. stroke. org. uk

Most important thing is to have strong stroke patient organisations at local and National 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 0845 3033 100 Website www. stroke. org. uk

European level • Demand equality of action against strokes • • • and their 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 0845 3033 100 Website www. stroke. org. uk

More people involved, leads to more possibilities • Very important that we grow stroke 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. Stroke helpline 0845 3033 100 Website www. stroke. org. uk

Now is the time • Patient organisations are required to be • • • 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 0845 3033 100 Website www. stroke. org. uk

Growing support and membership of your Stroke Support Organisation • The more people you 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 Stroke helpline 0845 3033 100 Website www. stroke. org. uk

So have clarity about what you want to do ; • Need resources and 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? Stroke helpline 0845 3033 100 Website www. stroke. org. uk

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

Word of mouth • Supporters recruiting other • • • supporters Have to equip 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 Stroke helpline 0845 3033 100 Website www. stroke. org. uk

Service provision • Provide services, people • • to be referred Nature of relationship 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 Stroke helpline 0845 3033 100 Website www. stroke. org. uk

Campaign activity • Campaign publicly on an issue • Specifically ask for others who 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. Stroke helpline 0845 3033 100 Website www. stroke. org. uk

Mutual benefit • People support you, because you give • • them something in 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 Stroke helpline 0845 3033 100 Website www. stroke. org. uk

Public relations work • Getting stories with a request for people to be • 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 0845 3033 100 Website www. stroke. org. uk

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

We’ll support all stroke patient organisations • Whether in Beveridge health systems • • 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 0845 3033 100 Website www. stroke. org. uk

So over next 5 years. . • Want to see lobbying progressing at • 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 0845 3033 100 Website www. stroke. org. uk

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