interactive and fun, to offer you

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Welcome !
Introductions Plan for the day
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Aims of today

• Consider how we as individuals and groups can
  contribute towards No Avoidable Infections
• Review how best to make a difference in working
  with people who can deliver the necessary changes
  and improvements
• Gather some useful new perspectives and a toolbox
  of ideas
• Communicate messages and asks to DH in a way
  which will stimulate forward action
• Lindsay Wilkinson will be here at 2.30pm today
• MP event on April 1st hosted by Dr Brian Iddon MP
• Hone succinct messaging and communications plans
  driven by your own group's objectives
• What else?

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THE ROLE THAT PATIENT PUBLIC GROUPS HAVE IN
HEALTHCARE
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Beyond token involvement

• Government has passed legislation to involve
  patients and the public in shaping local health
  services so that they truly reflect the needs of
  the community they serve.
• NHS is being given more responsibility by the
  Government for the design and delivery of local
  health services and has a duty to involve and
  consult patients and the public when planning
  services. All of this means that local
  campaigning and influencing will become more
  important and there is more opportunity for
  direct involvement in improving services

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Across all sectors

• There is a long history in the UK of people
  coming together in groups to achieve a common
  goal. Quite often, grass roots activists with
  similar experiences got together simply as a way
  of supporting each other, or because they felt
  they were being discriminated against.
•  
• Some have campaigned for better services or
  better working conditions while others have
  simply strived to raise awareness.
• Many of the independent disability advocacy
  groups in the UK were started by grass roots
  activists now they are properly funded and
  provide substantial support.

RNIB (2004) ISBN 1 85878 621 5
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• We need to work in partnership in particular
  with patients and patient groups.
• In order to form effective prevention and control
  policies, it is essential to work closely with
  patients and their relatives to better tailor
  policies to patients real needs...well informed
  and empowered patients are a strong asset for
  European societies.    
• Commissioner Vassiliou, 7 April at ECPC Cancer
  Patient Summit

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• If campaigning groups dont represent the public
  and patients in policy-making, then who is going
  to ?
•   
• Jeremy Laurance. Health Editor, The Independent.
• Challenges facing the Health Advocacy Community
• The views of policymakers media, Health
  Equality Europe, 2006

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Whos most active pressing for change?
a
Challenges Facing the Health Advocacy Community
a Europe-Wide Survey of Health Campaigners (2006)
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Who values and takes you seriously as a health
campaigner?
a
Challenges Facing the Health Advocacy Community
a Europe-Wide Survey of Health Campaigners (2006)
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How do you deliver your campaign?
s
Challenges Facing the Health Advocacy Community
a Europe-Wide Survey of Health Campaigners (2006)
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Major activities of campaigning groups in Europe
Challenges Facing the Health Advocacy Community
a Europe-Wide Survey of Health Campaigners (2006)
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Do you believe the patient/advocacy movement
could become an effective force within healthcare
systems?
Yes but theyll always have to battle for
airtime with the likes of doctors, nurses
political players
Patient advocates need to be self-critical.
People they put forward as representatives need
to be effective
Gary Finnegan, Editor Irish Medical Times
Joanne Shaw, Vice-Chair NHS Direct
Yes absolutely. And it will. This is a
definite trend
Yes it already is
Jeremy Laurance, Health Editor, The Independent
In Challenges facing the Health Advocacy
Community The views of policymakers media,
Health Equality Europe, 2006
Stephen Pollard, Director Health Policy
Programme, Centre for the New Europe
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Focus on HCAI stakeholders

• Clear Government policies for increasing patient
  and public involvement in place
• DH has set up the HCAI stakeholder forum with
  twice-yearly meetings
• Your ad hoc interactions with DH
• DH has asked for some input from some of you
• Youve been active in a range of your own
  initiatives
• DH is aware of positive impact of working
  together with advocacy groups (eg cancer)
• Asked me to support you in developing the
  relationship
• There is real potential for achieving better
  outcomes by working to deliver shared objectives
  with the DH, the NHS, patients and the public.

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The value of experience and how to use it to
reach your objectives

• What motivates us?
• How to employ your experience to the best effect.

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Masterclass

• Campaigning tools and using them with greater
  precision to achieve what you plan to achieve.
• Look at the range of decision makers who could
  you reach out to?
• What are the different methods and techniques
  that you can use?
• What makes an effective patient group?
• What makes an effective patient advocate?
• How to ensure that people listen?

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DVT campaign
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CMO responds to recommendations. Implementation
Group established.
DVT campaign
Government established expert working group on
DVT in hospitalised patients. Group submitted
report with recommendations on best practice to
Chief Med Officer.
12 recommendations from HSC resulted in
favourable NHS environment for increased use of
thromboprophylaxis
Maintain pressure to ensure implementation of
new guidance
HSC Inquiry
Arm Parliamentarians with the facts, ideas and
do the leg-work
MP Peer Seminar VTE deaths
Communicate to Parliamentarians but also
officials
Think Tank Seminar Preventable deaths
KOL Parliamentary Policy briefingsVTE
deaths in UK
Mobilise researchers and KOLs
Advocacy-led project over 15 months
Patient group launch. Etablish Lifeblood in
Westminster, Scotland and Wales
Support patient groups in carrying the message
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Implementing NSF for Diabetes
Diabetes Czar
The consultation is a great initiative which
helps my work tremendously
Launched at Treasury
Grassroots feedback via managed blog
Events in libraries hospitals
Health Minister
The grassroots information helps me raise
diabetes issues in Government
Report presented To Minister with media
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Patient group responses to negative NICE

Each patient group made a robust direct response
to NICE

• Beating Bowel Cancer
• Mobilizing email to 50 Patient Voices
• International Myeloma Foundation
• Website How To and response mobilization
• Mailed 600 haematology nurses
• Lymphoma Association
• Website How To and response mobilization
• Patient activist for media political
  activities
• Macmillan Cancer Relief
• Website How To and response mobilization
• Ovacome
• Mobilizing email to 1,300 members
• Mother daughter patient activists
• Leukaemia CARE
• Website How To and response mobilization
• Bowel Cancer UK
• Website How To and response mobilization
• CancerBACUP
• Led joint consultation response

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Cancer Campaigning Group Call to Action
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Routes to generate your data mobilize
supporters

• Telephone hotline audit
• Vox pops
• Zoomerang questionnaires
• Web-based voting around a Service Pledge
• On-line surveys (managed blogs)
• Publication reviews
• Learning at the NHS desk/ in the lab
• Trials
• Patient groups eg diabetes, kidney disease, DVT,
  cancer

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Range of delivery vehicles

• You, and your memberships supported by templates
• Telephone, emails and e-virus chains
• Websites your own and related interest groups
• Newsletters, pamphlets and magazine articles
• Letter to the Editor / Letter to the Minister
• Local user groups (LINks)
• Response to public consultations
• Ask for input to DH/local NHS working teams
• Journalists and health editors
• Seminars Radio Days with experts

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Range of delivery vehicles

• Letters, briefings and meetings with Ministerial,
  DH, MPs and councillors
• Constituency Days of Action/ MP clinic visits
• Parliamentary tactics via MP APPGs and peers
  PQ/WQ, debates, EDMs, MP visits in House of
  Commons, stakeholder inquiry event (World Health
  Day, 7th April)
• Parliamentary elections MEP election issue/
  party health manifestos/ prospective candidates
• Co-signed declarations as a political tool
  (launch events with media coverage)
• Mass lobby of Parliament

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Co-signed declarations and calls for action,
examples

• Warsaw Declaration
• Breakthrough Service Pledge
• European Patients Forum
• Europacolon
• Lung Cancer Plan
• Cancer Campaigning Group

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Resources

• Professional Panel of experts, includes
• Prof Martin Buxton/Julia Fox-Rusby (HE Social
  Sciences)
• Prof Nick Bosanquet (Health Policy)
• Prof Ray Powles (Oncologist)
• Dr Martin Duerden (Consultant Public Health)
• Mr Michael Sobanja (Chair NHS Confederation)
• Ros Meek (CEO ARMA)
• Jane Jones (Consultant in medical education)
• Isobel Davies (Consultant in HR)
• Introductions to other charities
• Cancer, Kidney disease, Diabetes, DVT etc
• How to for your members to be effective
  advocates
• Learning at the NHS desk/ in the lab
• Platforms for the HCAI stakeholder groups are in
  development

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What makes an effective advocate?

• Clear aims, simple messages and what you are
  calling for
• Impact and need for change
• Personal face on the issue
• A well-argued case supported by facts
• Anecdotal feedback
• Statistics/ questionnaire/survey
• How the proposal has worked well elsewhere
• A message that is and sounds helpful in line
  with DH objectives
• Politically relevant
• Takes into account all relevant issues
• Comes across appropriately
• One that helps people to do their job

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What makes an effective advocate?

• Being strategic
• Picking short-term wins but being ready to play
  the long game
• Integration of political, clinical, scientific
  and public elements
• Being fleet of foot, alert to opportunities with
  clear talking points
• Elevator speech for a quick briefing of
  official, MP or journalist
• Mobilising people who have the power to make the
  changes and those who influence them
• Active/influential supporters diverse experts,
  related interest groups and public
• An appropriate range of delivery vehicles
• Being mindful of ones personal and professional
  reputation as a campaigner

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What makes an effective advocate?

•  
• Effective communication
• Open questions, cool-calm-collected
• Listening skills
• Assertiveness not aggression
• Negotiation
• If there is complete disagreement over an issue
  try to find a middle ground that you can all
  agree on
• If there is no middle ground, a reasonable,
  realistic compromise

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ADVOCACY LESSONS LEARNED
Promoting patient-centred healthcare around the
world

1. Get Their Attention Its the Sizzle That Sells
2. Make Them Care Engage Them Emotionally
3. An Effective Demonstration Needs Numbers Make It
   Politically Worthwhile to Solve the Issue
4. Engage Influential Insiders to Support Issue
   Better Yet, Get a Seat at the Table
5. Row Together Find Common Ground Watch Out for
   Divide and Conquer Keep Everyone Informed and
   Engaged
6. Let Others (Without Vested Interest) Speak For
   You Make Solving the Issue the Right Thing to
   Do
7. Small is Good Dont Forget David Won
8. When You Get to the Top, Dont Forget to Send the
   Elevator Back Down

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Characteristics of an influential campaigning
group
Challenges facing the Health Advocacy
Community The views of policymakers media,
Health Equality Europe, 2006
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Characteristics of an influential campaigning
group
Mel Read former MEP. Challenges facing the
Health Advocacy Community The views of
policymakers media, Health Equality Europe, 2006
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PLANNING YOUR MESSAGES TACTICAL PLAN

• Where does local practice need to change?
• Where does national policy need to change?
• Beginning to think through which parts of your
  agenda fit best where and therefore how to
  communicate so that people listen
• and act.
• What are you campaigning objectives and who are
  you trying to reach and why, what are you going
  to do and when who will take this forward?

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Strategic Planning

• Simply put, strategic planning determines where
  an organization is going over the next year or
  more, how it's going to get there and how it'll
  know if it got there or not
• Goals-based planning is probably the most common
  and starts with focus on the organization's
  mission, goals to work toward the mission,
  strategies to achieve the goals, and action
  planning (who will do what and by when).

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Benefits of Strategic Planning

• Strategic planning serves a variety of purposes,
  including
• 1. Clearly define the purpose of the organization
  and to establish realistic goals
• 2. Communicate those goals and objectives to the
  organizations constituents.
• 3. Develop a sense of ownership of the plan.
• 4. Ensure the most effective use is made of the
  organizations resources by focusing the
  resources on the key priorities.
• 5. Provide a base from which progress can be
  measured and establish a mechanism for informed
  change when needed.
• 6. Bring together of everyones best and most
  reasoned efforts
• 7. Provides clearer focus of organization,
  producing more efficiency and effectiveness

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NAME OF GROUP
Mission Statement
Key Objectives
1.J 2.lk 3. G 4.
FGHJHM G G G G G G G
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NAME OF GROUP
Key Achievements To Date

1. F
2. D
3. D
4. G

FGHJHM G G G G G G G
What Else We Would Like to Achieve eg Change What
?

1. F
2. D
3. D
4. G

FGHJHM G G G G G G G
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NAME OF GROUP
STRENGTHS WEAKNESSES
FGHJHM G G G G G G G
FGHJHM G G G G G G G
OPPORTUNITIES THREATS
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MAJOR DECISION MAKERS RELEVANT TO US
Decision Maker What Can This Decision Maker Do To Help Us Achieve Our Objectives?





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OUR ACTIVITIES WITH EACH MAJOR DECISION MAKER
Decision Maker Tactical Activities To Help Us Achieve Our Goals





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OUR ENGAGEMENT PLAN TIMELINE
OBJECTIVE
2009 Q1 2009 Q2 2009 Q3 2009 Q4 2010 Q1 2010 Q2 2010 Q3




1
2
3
4
FGJ Y FGXJSYKDUK
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NAME OF GROUP
New Support or Skills We Need To Deliver Our Plan

1. F
2. D
3. D
4. G
5. D
6. D
7. D
8. D
9. F
10. B
11. F
12. F

FGHJHM G G G G G G SDG G
DFHF V VHJN B
FGHJHM G G G G G G G
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