Stroke helplineWebsite 0845 3033 100 Raising the Profile of Stroke Neurological alliance AGM 24 th November 2009

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


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


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


But this had not happened.


Is progress driven by evidence of what works?

• Who drives change and improves things?

• Politics increasingly responds to pressure group activity


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


General Election 2005


Stroke Association manifesto www.stroke.org.uk/document.rm?id=251 National stroke Strategywww.policylibrary.com/UK/.../The_National_Stroke_Strategy_for_England


Take notice or die


It’s the money stupid ! November 2005

Reducing Brain Damage

Faster Access to Better Stroke Care

National Audit Office Report to Public Accounts Committee


(Not) Getting back to work after stroke

Money it ‘s costing

Compassion

Illogical

It could be you


Humanising the effects of a stroke.


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


CHARITY PROFILE

Expressions Planning


Getting some External Profile and RESPECTWinning recognition for quality, achievement,

Making things happen

Knowing what you are talking about



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


Building a coalition of support• Giving to get

• Relationships

• Clear goals

• Only way to eat an elephant small bites at a time


All Party Parliamentary Group

• Going since 2004

• Now have 155 members, 34 originally

• Contact every MP every 6 months at least


Relationships & Champions• Critical to have patient media savvy

volunteers• Politicians• Celebrities• Businessman• Civil servants• Experts• Journalists


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


Tell it as it is

Be informative

Be a best friend to the public


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


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


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


Thank You

Documents

Stroke helplineWebsite 0845 3033 100 Raising the Profile of Stroke Neurological alliance AGM 24 th November 2009