Transcript World COPD Conference

EFA tackling COPD
MARIANELLA D. SALAPATAS
EFA PRESIDENT
European Federation of Allergy and Airways Diseases Patients’ Associations
21 countries
33 member organisations
in which over 500.000 patients
& carers
Highest governing body: the Annual General Meeting of Members
STRUCTURE
Structure
Highest governing body Annual General Meeting of
Members
Board: 5 persons from different member organisations
and countries, ~ 5 meetings/ year
Secretariat
• Excecutive Officer, Project & Fundraising Manager,
Policy Training Supporter
• Project Member EuroPrevall FP6, GA2LEN team
leader, COPD Advisor, Medical Advisor
Working Groups with members
BILL OF RIGHTS
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The right to receive early and accurate diagnosis
The right for information and education about COPD
The right for support and understanding
The right to receive care and treatment that will benefit them
The right to their fair share of society’s involvement and
investment in their welfare and care
• The right to advocate with other COPD patients and
supporters for improved COPD care and COPD prevention
• The right to safe air and environment
About EFA: MISSION
• Reducing the frequency and severity of allergies, asthma
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and COPD;
Minimize their societal implications;
Improve health-related quality of life of patients;
Ensure full citizenship of people with these conditions
and pursue equal health opportunities in the field of allergy
and airways in Europe.
Central Values
Patient perspective – Involvement - Sharing knowledge and
experience - Partnership and cooperation - Visibility and
presence
About EFA: OBJECTIVES
• Advocacy: Influencing European policy making on
indoor & outdoor air quality, quality & accessibility of
healthcare, patient participation and research
• Capacity building: strong and professional EFA and
members
• Empowerment: Empowering member organizations to
realize a comparable level of serving of patients
interest by exchanging experiences on national
policymaking, products and services and awareness
• Prevention
• Smoking cessation
• Early diagnosis
• Health care
• Social support
• Food labelling
My
TREATMENT
• Indoor Air
My
• Outdoor Air ENVIRONMENT
• Chemicals
• Prevention
• Care
• Medicines
• Medicines
• Rehabilitation
• Reimbursement
• Information
• Education
• Treatment
My
PARTICIPATION • Society
• Health, Env
& Research
Policy
RESEARCH
IN
• Quality of Life
• Finding the cure
EFA SOFIA DECLARATION
ALL patients with COPD request:
Comprehensive European and national programmes on:
• Access to good, equal standards of care, no matter where
you live in Europe
• High standards of and access to patient & professional
education, information and new knowledge
• Healthy, unpolluted airto breathe indoors and out
COPD –first priorities
– •Total ban of smoking in all public and workplaces
– •Access to and awareness and understanding of early diagnosis
– •Access to rehabilitation
EP COPD Declaration
• Declaration tabled by MEP Catherine Stihler
• Launch & press event at the European
Parliament in Strasbourg
• Leaflet for MEPs to put COPD on map,
understand & support
• Two month coordinated advocacy campaign
with members to gain half + one MEPs
signatures
• Lung function testing at the EP
• Adverts in Parliament magazine
• Outcome: 220 MEPs signed up, increased
awareness and support for COPD by the
MEPs
EFA and COPD
• COPD Declaration Campaign with ERS, ELF & members
• CAT
– Patient Advisor and patient org involvement coordination
• COPD uncovered – Global view of COPD
• EFA’s Book on COPD – Sharing & Caring
– Ongoing project preparation for WCD 2009
• COPD Working Group of members
• WCD
– Launch and media releases of EU air pollution website for patients:
www.knowyourairforhealth.eu
World No Tobacco Day 2008
The Association of Bulgarians with
Bronchial Asthma ABBA, the
Bulgarian Ministry of Health and
the
Bulgarian Society of Pulmonary
Disease:
National Awareness Campaign
“From Smoking to COPD”
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Call center 0700 10 105
One month
40 Health centers in 28 cities
2700 doctor’s visits
Free measuring lung capacity
The Pulmonary Association Heli, Finland
INTERVENTION IN
REHAB CENTER
8 days
6 couples
INTERVENTION AT
HOMES
4 times, 1 day = 4 days
2 groups (3+3 couples)
INTERVENTION
IN
REHAB CENTER
5 days
6 couples
ORGANIZED AND
ORGANIZED
VOLUNTARY
VOLUNTARY
PEER CROUPS
PEER GROUPS
INTERVIEW AT HOME
The Multidiciplinary, Demanding Group Rehabilitation at
Home for COPD-Patients with Oxygen Therapy and their
next of Kin in 2006-2008 (N=22 couples) Contact: [email protected]
Quality of COPD care
from Patient Perspective
Aim: To develop criteria of quality of COPD healthcare from the perspective of
patients
Project:
• Survey “What do you think?” among patients with COPD (9 focus groups)
• The results discussed in group of care professionals
• Methods used are the Delphi method and the AIRE instrument (Appraisal of
Indicators through Research and Evaluation)
Outcome:
• Publication “ COPD criteria of quality from the perspective of patients”,
• used by the Lung Alliance of the Netherlands (composed of a broad spectrum of
organisations involved in the care of patients with lung diseases) to create a
“care standard COPD”
Organisation:
The Dutch Vereniging Nederland Davos and the
Astma Patienten Vereniging VbbA/LCP
(since 2009 part of Astma Fonds)
It is possible to cope with COPD,
but it is necessary
to be a fighter
The FFAAIR French Federation of Associations
of Patients with Respiratory
Insufficiency
or Handicap.
40 associations
in France,
15 000 members
15 French cities,
more than 3000 patients and
their family members have
taken part in the “Tour de
France of sleep apnoea” in
2007-2008. There were the
meetings were patients shared
their experience and received
the answers for their
questions.
In April 2008
the FFAAIR member
Jean-Marie Ederer,
a COPD patient
with oxygen
apparatus has
realized a run
Paris-Brest,
500km in bicycle.
The Italian COPD Patients Association
presents:
Breathless and … a pinch of folly
An amusing satirical show based on the
patient's daily experiences that aims at:
• Taking a lighthearted look at the
patient/doctor dialogue
• Making the spirometry test hilarious
• Showing how to (mis)use medical terms
• Preventing and stopping smoking
• Increasing awareness about this chronic
disease
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Positive, reassuring message: COPD patients should be
more confident that they are able to manage their disease.
We can win the war against COPD!
THANK YOU