Stroke helpline Website0845 3033 100 www.stroke.org.uk
Raising the Profile of Stroke
Neurological alliance AGM24th November 2009
Stroke helpline Website0845 3033 100 www.stroke.org.ukStroke helpline Website0845 3033 100 www.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
Stroke helpline Website0845 3033 100 www.stroke.org.ukStroke helpline Website0845 3033 100 www.stroke.org.uk
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
Stroke helpline Website0845 3033 100 www.stroke.org.ukStroke helpline Website0845 3033 100 www.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
Stroke helpline Website0845 3033 100 www.stroke.org.ukStroke helpline Website0845 3033 100 www.stroke.org.uk
But this had not happened.
Stroke helpline Website0845 3033 100 www.stroke.org.ukStroke helpline Website0845 3033 100 www.stroke.org.uk
Is progress driven by evidence of what works?
• Who drives change and improves things?
• Politics increasingly responds to pressure group activity
Stroke helpline Website0845 3033 100 www.stroke.org.ukStroke helpline Website0845 3033 100 www.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
Stroke helpline Website0845 3033 100 www.stroke.org.ukStroke helpline Website0845 3033 100 www.stroke.org.uk
General Election 2005
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Stroke Association manifesto www.stroke.org.uk/document.rm?id=251 National stroke Strategywww.policylibrary.com/UK/.../The_National_Stroke_Strategy_for_England
Stroke helpline Website0845 3033 100 www.stroke.org.ukStroke helpline Website0845 3033 100 www.stroke.org.uk
Take notice or die
Stroke helpline Website0845 3033 100 www.stroke.org.ukStroke helpline Website0845 3033 100 www.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
Stroke helpline Website0845 3033 100 www.stroke.org.ukStroke helpline Website0845 3033 100 www.stroke.org.uk
(Not) Getting back to work after stroke
Money it ‘s costing
Compassion
Illogical
It could be you
Stroke helpline Website0845 3033 100 www.stroke.org.ukStroke helpline Website0845 3033 100 www.stroke.org.uk
Humanising the effects of a stroke.
Stroke helpline Website0845 3033 100 www.stroke.org.ukStroke helpline Website0845 3033 100 www.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
Stroke helpline Website0845 3033 100 www.stroke.org.ukStroke helpline Website0845 3033 100 www.stroke.org.uk
CHARITY PROFILE
Expressions Planning
Stroke helpline Website0845 3033 100 www.stroke.org.ukStroke helpline Website0845 3033 100 www.stroke.org.uk
Getting some External Profile and RESPECTWinning recognition for quality, achievement,
Making things happen
Knowing what you are talking about
Stroke helpline Website0845 3033 100 www.stroke.org.ukStroke helpline Website0845 3033 100 www.stroke.org.uk
Stroke helpline Website0845 3033 100 www.stroke.org.ukStroke helpline Website0845 3033 100 www.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
Stroke helpline Website0845 3033 100 www.stroke.org.ukStroke helpline Website0845 3033 100 www.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
Stroke helpline Website0845 3033 100 www.stroke.org.ukStroke helpline Website0845 3033 100 www.stroke.org.uk
All Party Parliamentary Group
• Going since 2004
• Now have 155 members, 34 originally
• Contact every MP every 6 months at least
Stroke helpline Website0845 3033 100 www.stroke.org.ukStroke helpline Website0845 3033 100 www.stroke.org.uk
Relationships & Champions• Critical to have patient media savvy
volunteers• Politicians• Celebrities• Businessman• Civil servants• Experts• Journalists
Stroke helpline Website0845 3033 100 www.stroke.org.ukStroke helpline Website0845 3033 100 www.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
Stroke helpline Website0845 3033 100 www.stroke.org.ukStroke helpline Website0845 3033 100 www.stroke.org.uk
Tell it as it is
Be informative
Be a best friend to the public
Stroke helpline Website0845 3033 100 www.stroke.org.ukStroke helpline Website0845 3033 100 www.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
Stroke helpline Website0845 3033 100 www.stroke.org.ukStroke helpline Website0845 3033 100 www.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
Stroke helpline Website0845 3033 100 www.stroke.org.ukStroke helpline Website0845 3033 100 www.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