1. Stroke helplineWebsite 0845 3033 100www.stroke.org.uk Raising the Profile of Stroke Neurological alliance AGM 24 th November 2009

2. Stroke helplineWebsite 0845 3033 100www.stroke.org.uk Stroke helplineWebsite 0845 3033 100www.stroke.org.uk Back in 90’s Stroke Physicians in Scotland and across world had proved that specialist stroke units could reduce mortality and levels of disability by 30% Research was underway on using clot busting drugs which could be effective in about 20% of people with clots in the brain. It was known that early rehab led to great improvements in outcomes Apart from a few champions the provision according to evidence was appalling

3. Stroke helplineWebsite 0845 3033 100www.stroke.org.uk Stroke helplineWebsite 0845 3033 100www.stroke.org.uk In 2000 Had some policy direction from the 5 th Chapter of the National Service framework for Older people Should be stroke units Early and continuing rehab Long term support Models and timetable

4. Stroke helplineWebsite 0845 3033 100www.stroke.org.uk Stroke helplineWebsite 0845 3033 100www.stroke.org.uk By 2004 Every hospital will have clinical audit systems for stroke Every hospital will have stroke units Protocols for rapid referral and management of mini strokes Every G Practice will identify all stroke survivors and have protocols for treating them agreed with local specialist services

5. Stroke helplineWebsite 0845 3033 100www.stroke.org.uk Stroke helplineWebsite 0845 3033 100www.stroke.org.uk But this had not happened.

6. Stroke helplineWebsite 0845 3033 100www.stroke.org.uk Stroke helplineWebsite 0845 3033 100www.stroke.org.uk Is progress driven by evidence of what works? Who drives change and improves things? Politics increasingly responds to pressure group activity

7. Stroke helplineWebsite 0845 3033 100www.stroke.org.uk Stroke helplineWebsite 0845 3033 100www.stroke.org.uk How to do it ? Profile of Stroke has to be higher An issue of Relevance to Public Making it important to decision makers Creating a movement with mass Implementation plan Carrots and sticks Be a great organisation

8. Stroke helplineWebsite 0845 3033 100www.stroke.org.uk Stroke helplineWebsite 0845 3033 100www.stroke.org.uk General Election 2005

9. Stroke helplineWebsite 0845 3033 100www.stroke.org.uk Stroke helplineWebsite 0845 3033 100www.stroke.org.uk Stroke Association manifesto www.stroke.org.uk/document.rm?id=251 National stroke Strategy www.policylibrary.com/UK/.../The_National_Stroke_Strategy_for _England

10. Stroke helplineWebsite 0845 3033 100www.stroke.org.uk Stroke helplineWebsite 0845 3033 100www.stroke.org.uk Take notice or die

11. Stroke helplineWebsite 0845 3033 100www.stroke.org.uk Stroke helplineWebsite 0845 3033 100www.stroke.org.uk It’s the money stupid ! November 2005 Reducing Brain Damage Faster Access to Better Stroke Care National Audit Office Report to Public Accounts Committee

12. Stroke helplineWebsite 0845 3033 100www.stroke.org.uk Stroke helplineWebsite 0845 3033 100www.stroke.org.uk (Not) Getting back to work after stroke Money it ‘s costing Compassion Illogical It could be you

13. Stroke helplineWebsite 0845 3033 100www.stroke.org.uk Stroke helplineWebsite 0845 3033 100www.stroke.org.uk Humanising the effects of a stroke.

14. Stroke helplineWebsite 0845 3033 100www.stroke.org.uk Stroke helplineWebsite 0845 3033 100www.stroke.org.uk Brand-How we are perceived Know how you are perceived Work out how you have to be perceived if you are to achieve your mission Do what has to be done to bridge the gap

15. Stroke helplineWebsite 0845 3033 100www.stroke.org.uk Stroke helplineWebsite 0845 3033 100www.stroke.org.uk CHARITY PROFILE Expressions Planning

16. Stroke helplineWebsite 0845 3033 100www.stroke.org.uk Stroke helplineWebsite 0845 3033 100www.stroke.org.uk Getting some External Profile and RESPECT Winning recognition for quality, achievement, Making things happen Knowing what you are talking about

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

18. Stroke helplineWebsite 0845 3033 100www.stroke.org.uk Stroke helplineWebsite 0845 3033 100www.stroke.org.uk The Stroke Association Third sector finalist 2009 “Most Impact” Third Sector finalist 2009 “Best for Social Enterprise” Medical Charity of the Year 2009 Finalist Britain’s Best Charity 2008 Finalist Best 2008 Healthcare and Medical Research Charity finalist Britain's Best Charity 2007, Finalist Winner 2006 Best Healthcare and Medical Research Charity Winner 2005 Medical Charity of the Year

19. Stroke helplineWebsite 0845 3033 100www.stroke.org.uk Stroke helplineWebsite 0845 3033 100www.stroke.org.uk Building a coalition of support Giving to get Relationships Clear goals Only way to eat an elephant small bites at a time

20. Stroke helplineWebsite 0845 3033 100www.stroke.org.uk Stroke helplineWebsite 0845 3033 100www.stroke.org.uk All Party Parliamentary Group Going since 2004 Now have 155 members, 34 originally Contact every MP every 6 months at least

21. Stroke helplineWebsite 0845 3033 100www.stroke.org.uk Stroke helplineWebsite 0845 3033 100www.stroke.org.uk Relationships & Champions Critical to have patient media savvy volunteers Politicians Celebrities Businessman Civil servants Experts Journalists

22. Stroke helplineWebsite 0845 3033 100www.stroke.org.uk Stroke helplineWebsite 0845 3033 100www.stroke.org.uk Emotion, emotion, emotion Reinforce good practice by telling stories of how it worked Know your target audiences If it makes you tearful then you’ve been affected Focus on the positive Make your audience part of the solution Act FAST

23. Stroke helplineWebsite 0845 3033 100www.stroke.org.uk Stroke helplineWebsite 0845 3033 100www.stroke.org.uk Tell it as it is Be informative Be a best friend to the public

24. Stroke helplineWebsite 0845 3033 100www.stroke.org.uk Stroke helplineWebsite 0845 3033 100www.stroke.org.uk Consultation So many people have to own the solution to make progress. Almost the solution is the consultation, if it binds in key players to the way forward. Consultation demands respect and feedback

25. Stroke helplineWebsite 0845 3033 100www.stroke.org.uk Stroke helplineWebsite 0845 3033 100www.stroke.org.uk Summary Have stroke strategy in place in 3 countries of UK and Plan in Wales Ring fenced funding in two Stroke Association has doubled in size in 5 years By 2015 planning to work directly with 1 in 2 of all people affected by stroke Have DH Campaigns in England in media on stroke Staffing grown from 300 to 700 Over last 4 years patients spending 90% of time on a stroke unit grown from 42% to 56% Anecdotal evidence that 4 times as much clotbusting now occurring Awareness of stroke symptoms up from 45% 2004, to 70% 2009

26. Stroke helplineWebsite 0845 3033 100www.stroke.org.uk Stroke helplineWebsite 0845 3033 100www.stroke.org.uk Summary Understand you are a pressure group For anyone to take notice of you a lot of elements have to be in place Respect Awareness Relationships Emotional connection and evidence of what to do Ability to wield carrots and sticks And you have to be a well organised organisation

27. Stroke helplineWebsite 0845 3033 100www.stroke.org.uk Stroke helplineWebsite 0845 3033 100www.stroke.org.uk Thank You