Patient Organizations working In
National Coalitions
The Experience of Lithuania
Ugnė Šakūnienė
EPF Autumn Regional Advocacy Seminar, Budapest, 26-10-2010
I am the president of Lithuanian Kidney
Patients’ Association GYVASTIS
and a member of the board of
The Council of Representatives of
Patients’ Organizations of Lithuania
WHAT IS GYVASTIS?
Association GYVASTIS unite people who live after
transplantation of:
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–
–
–
–
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kidney
heart
liver
lung
heart-lungs complex
kidney-pancreas complex
And those who are on waiting list for transplantation
Dialysis: patients with no kidney function
Council of Representatives of Patients’ organizations of
Heamodialysis procedure
« Gyvastis » – people who live with
transplanted organs or wait for transplantation
COUNCIL OF REPRESENTATIVES OF PATIENTS’
ORGANIZATIONS OF LITHUANIA
• HOW and WHY this coalition was set up in
Lithuania
• HOW we work together
• The benefit for a patient organization to be a
member of a national coalition
The coalition was set up in 2002
What was the situation earlier?
Council of Representatives of Patients’ organizations of
In union there is strength. Aesop
Council of Representatives of Patients’ organizations of
But did we have it?
The period before 2002
• Very few active patients organizations
• Many passive patients organizations
• A lot of patients who did not belong to
any organization
ACTIVE ORGANISATIONS
• Represented patients’ rights
• Crusades for better treatment and quality of life
Lithuanian Diabetes Association - one of the most
active organizations that time
The head of Association Vida Augustinienė
PERSPECTIVE OF GOVERNMENTAL HEALTH
CARE INSTITUTIONS:
“You are not the only one.
There are a lot of other patients who need
treatment too. We cannot do everything only for
yours patients”
The necessity to create a coalition became obvious.
Council of Representatives of Patients’ organizations of
IMPULSE TO CREATE COALITION:
decision of the Health officials’ which was literally
deadly dangerous to lots of patients.
• They decided that all medications for chronically ill
patients had to be prescribed by a GP but not a
specialist,
• The other decision was to make a limit for
prescriptions.
At the first month of this “reform” a lot of patients did
not receive vital medications.
VIDA AUGUSTINIENĖ WAS THE FIRST WHO JOINED
ACTIVE PATIENTS‘ ORGANISATIONS:
• Free phone number for patients who have got medical
complaints;
• Complaints and cases when patients did not receive
medications and their health condition became worse
were analyzed;
• Collective press-releases for media.
The first time when several patients’ organizations were
working together and we were successful
At the beginning, we worked informally.
Joint work became more common day after day.
In 2002 Council of Representatives of Patients’
Organizations of Lithuania was set up. of
• Only 8 patients organizations became members at
the beginning
• Today there are 26 patients’ organizations
consolidating people with various chronic diseases
(arthritis, asthma, diabetes, kidney, heart, liver and other
organs insufficiency, mental, onco-heamatological
diseases and others).
• These organizations have 18 thousands members
and represent rights of around 1 million patients.
WHAT WE HAVE ACHIEVED DURING
THESE 8 YEARS?
Our representatives integrates almost in all
working groups of decision makers,
committees and other structures.
IN 2005
• Council of Representatives of Patients’ Organizations
of Lithuania became a member of International
Alliance of Patients’ Organizations of Representatives
of Patients’ organizations of
IN 2007:
Became a member of European Patients’ Forum
IN 2009:
Vida Augustinienė – the head of the Council of
Representatives of Patients’ Organizations of
Lithuania – became a member of the board of EPF
HOW WE ARE WORKING TOGETHER?
• We do not have office, staff, computers, etc.
• Coalition is registered in the office of Lithuanian
Diabetes Association
• Every member of our coalition uses his own
workplace, computers, etc.
When IT technologies are used propely it is possible to
work very successfully even in such conditions.
WHAT ARE THE MAIN THINGS TO BE
SUCCESSFUL?
1. The “right” leader (active, strong, to have
diplomatic features and experience).
2. Collective work and one formal opinion.
3. Good team.
Coming together is a
beginning.
Keeping together is
progress.
But working together is
success.
Henry Ford
WHAT IS THE BENEFIT OF BEING A MEMBER
OF A NATIONAL COALITION?
1. Information
As we are members of various structures of decision
makers, we can receive information which we need
and react in right time.
We can influence the decision makers.
Council of Representatives of Patients’ organizations of
2. Possibility to work together with organizations
whose purposes are similar to your organization.
3. Possibility to learn from each other.
4. Possibility to support each other.
• of
THE MOST IMPORTANT:
Together we are much stronger and can
achieve much more than working
separately.
If we are united like brushwood roped in
this broom – nobody can win against us
If we are separate, everybody can break us
THANK YOU FOR ATTENTION
AND PATIENCE 