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Raising the Profile of Stroke

Raising the Profile of Stroke. Neurological alliance AGM 24 th November 2009. 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%

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Raising the Profile of Stroke

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  1. Raising the Profile of Stroke Neurological alliance AGM 24th November 2009

  2. 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. In 2000 • Had some policy direction from the 5th Chapter of the National Service framework for Older people • Should be stroke units • Early and continuing rehab • Long term support • Models and timetable

  4. 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. But this had not happened.

  6. Is progress driven by evidence of what works? • Who drives change and improves things? • Politics increasingly responds to pressure group activity

  7. 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. General Election 2005

  9. 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. Take notice or die

  11. 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. (Not) Getting back to work after stroke Money it ‘s costing Compassion Illogical It could be you

  13. Humanising the effects of a stroke.

  14. 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. CHARITY PROFILE Expressions Planning

  16. Getting some External Profile and RESPECT Winning recognition for quality, achievement, Making things happen Knowing what you are talking about

  17. 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

  18. Building a coalition of support • Giving to get • Relationships • Clear goals • Only way to eat an elephant small bites at a time

  19. All Party Parliamentary Group • Going since 2004 • Now have 155 members, 34 originally • Contact every MP every 6 months at least

  20. Relationships & Champions • Critical to have patient media savvy volunteers • Politicians • Celebrities • Businessman • Civil servants • Experts • Journalists

  21. 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

  22. Tell it as it is Be informative Be a best friend to the public

  23. 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

  24. 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

  25. 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

  26. Thank You

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