Transcript interactive and fun, to offer you useful new perspectives

Introductions
Plan for the day
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?
THE ROLE THAT PATIENT & PUBLIC
GROUPS HAVE IN HEALTHCARE
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
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
“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
“If campaigning groups don’t 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
“Who’s most active
pressing for change?”
a
Challenges Facing the Health Advocacy Community:
a Europe-Wide Survey of Health Campaigners (2006)
“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)
“How do you deliver your campaign?”
s
Challenges Facing the Health Advocacy Community:
a Europe-Wide Survey of Health Campaigners (2006)
Major activities of
campaigning groups in Europe
Challenges Facing the Health Advocacy Community:
a Europe-Wide Survey of Health Campaigners (2006)
“Do you believe the patient/advocacy movement could
become an effective force within healthcare systems?”
Patient advocates need to be
self-critical. People they put
forward as representatives need
to be effective
Joanne Shaw, Vice-Chair NHS Direct
“Yes absolutely.
And it will.
This is a definite trend”
“Yes but they’ll always
have to battle for airtime
with the likes of doctors,
nurses & political players”
Gary Finnegan, Editor Irish Medical Times
“Yes it already is”
Jeremy Laurance, Health Editor, The Independent
Stephen Pollard, Director Health Policy
Programme, Centre for the New Europe
In: Challenges facing the Health Advocacy Community
The views of policymakers & media, Health Equality Europe, 2006
Focus on HCAI stakeholders
• Clear Government policies for increasing patient and
public involvement in place
• DH has set up the HCAI stakeholder forum with twiceyearly meetings
+ Your ad hoc interactions with DH
+ DH has asked for some input from some of you
+ You’ve 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.
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.
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?
DVT campaign
DVT campaign
CMO responds to recommendations.
Implementation Group established.
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
HSC
Inquiry
MP & Peer Seminar:
“VTE deaths”
Think Tank Seminar:
“Preventable deaths”
KOL Parliamentary & Policy
briefings:
“VTE deaths in UK”
Patient group launch. Etablish
‘Lifeblood’ in Westminster,
Scotland and Wales
Arm Parliamentarians with the
facts, ideas and do the leg-work
Communicate to Parliamentarians
but also officials
Mobilise researchers and KOLs
Support patient groups in
carrying the message
Advocacy-led
project over
15 months
Implementing NSF for Diabetes
Diabetes Czar
Launched at Treasury
Grassroots feedback
via managed blog
Events in libraries
& hospitals
Report presented
To Minister with
media
“The
consultation is
a great
initiative which
helps my work
tremendously”
Health Minister
“The grassroots
information helps
me raise diabetes
issues in
Government”
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
The Patients Association
Media personality with cancer open to media
19
Cancer Campaigning Group: Call to Action
Routes to generate your data
& mobilize supporters
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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
Range of delivery vehicles
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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
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
Co-signed declarations and
calls for action, examples
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Warsaw Declaration
Breakthrough Service Pledge
European Patients Forum
Europacolon
Lung Cancer Plan
Cancer Campaigning Group
Resources
• Professional Panel of experts, includes
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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
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
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
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
Promoting patient-centred healthcare around the world
ADVOCACY: LESSONS LEARNED
1.
2.
3.
4.
5.
6.
7.
8.
Get Their Attention; It’s the Sizzle That Sells
Make Them Care; Engage Them Emotionally
An Effective Demonstration Needs Numbers; Make It
Politically Worthwhile to Solve the Issue
Engage Influential Insiders to Support Issue; Better Yet,
Get a Seat at the Table
Row Together; Find Common Ground; Watch Out for
“Divide and Conquer”; Keep Everyone Informed and
Engaged
Let Others (Without Vested Interest) Speak For You;
Make Solving the Issue the “Right Thing” to Do
Small is Good; Don’t Forget: David Won
When You Get to the Top, Don’t Forget to Send the
Elevator Back Down
Characteristics of an influential
campaigning group
Clear objectives &
achievable goals
Fact based
messages &
holistic viewpoint
Accessible &
representing all
views
Professional,
robust & effective
delivery
Understand how
Public Affairs
works & good use
of campaign tools
Challenges facing the Health Advocacy Community
The views of policymakers & media, Health Equality Europe, 2006
Characteristics of an influential
campaigning group
Main hurdles are lack of
funding & professionalism
Campaigners need to be
more detached & less
emotional about the issues
Ability to make
a difference
Target the right people to
speak with
You only have one crack at
a politician – come
prepared
Mel Read former MEP.
Challenges facing the Health Advocacy Community
The views of policymakers & media, Health Equality Europe, 2006
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?
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).
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 organization’s
constituents.
3. Develop a sense of ownership of the plan.
4. Ensure the most effective use is made of the organization’s
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 everyone’s best and most reasoned efforts
7. Provides clearer focus of organization, producing more efficiency
and effectiveness
NAME OF GROUP:
Mission Statement
Key Objectives
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4. G
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NAME OF GROUP:
Key Achievements To Date
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2. D
G
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3. D
G
4. G
G
G
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What Else We Would Like to Achieve eg Change What ?
1. FFGHJHM
2. DG
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3. DG
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4. GG
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NAME OF GROUP:
STRENGTHS
WEAKNESSES
FGHJHM
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OPPORTUNITIES
THREATS
MAJOR DECISION MAKERS RELEVANT TO US
Decision Maker
What Can This Decision Maker
Do To Help Us Achieve Our Objectives?
OUR ACTIVITIES WITH EACH MAJOR DECISION MAKER
Decision Maker
Tactical Activities To Help Us
Achieve Our Goals
OUR ENGAGEMENT PLAN TIMELINE
OBJECTIVE:
2009
Q1
2009
Q2
2009
Q3
2009
Q4
1
2
3
4
2010
Q1
2010
Q2
2010
Q3
FGJ Y
FGXJSYKDU
K
NAME OF GROUP:
New Support or Skills We Need To Deliver Our Plan
FGHJHM
1. F
G
2. D
G
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3. D
G
4. G
G
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5. D
SDG
6. D
GDFHF
7. DV
VHJN
8. DBFGHJHM
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9. FG
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10.B
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11.F
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12.F
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