Beruflich Dokumente
Kultur Dokumente
Index
1. Presentation of my organization 2. The context in my Country starting from the point of view of patients 3. Chronic diseases and bureaucratic problems 4. Chronic diseases and economic problems 5. Chronic diseases and chronic pain 6. Chronic diseases and training of leader of patients organizations 7. Chronic diseases and patients rights 8. An invitation
Cittadinanzattiva
An Italian non-profit organization founded in 1978
Independent from political parties, trade unions, private companies or public institutions
Recognized as consumers organization
Our mission: Civic participation & Protection of citizens rights
A Network of Networks: Health, Consumer rights, Education, Justice, Corporate Social Responsibility, European citizenship
Who we are
107.539 members on voluntary basis, organized in 273 Local Assemblies 21 Regional Congress and 1 National Congress 8 Federated Associations Headquarter in Rome with 40 employees / 8 units
Promotion of network
Active Citizenship Network
more Read
Is a EU network of 90 citizens organizations from 30 countries, created in 2001 with the aim to develop a European active citizenship and promote the participation of citizens in policy making especially in the health-care field. In 2002, ACN, drafted the EU Charter of Patients Rights which has become a reference for EU rights in the healthcare and, in 2007, ACN launched the EU Patients Rights Day, celebrated every year on 18th April through local, national and EU events organized all over Europe.
National Coalition of Associations for Patients suffering Chronic Diseases
(CnAMC) created in 1996, it represents an example of crosscutting alliance between associations of people with chronic and rare diseases, for the protection of their rights. It has about 100 member associations. From 2000, it publish a:
Examples: Charter
of
Rights
European Patients rights Charter Charter of rights against unnecessary pain Colombian Patients right Charter
65%
63%
Absence of defined diagnostic care pathways 44% for each pathology Waiting list for visits and diagnostic tests 42%
Source: CnAMC-Cittadinanzattiva, 2010 Data collected with the contribution of 48 member associations of CnAMC
Lack of community care/ health care at local level & inadequate home care
Discharged from hospitals, patients reported no activation of local services Community care: Dissatisfaction related rehabilitation Community care: Dissatisfaction related prosthetic assistance Community care: Lack of integration between health interventions and social interventions Home care: Limited involvement of the family doctor Home care: the personnel involved is not always considered to be adequately competent
69%
Home care: the team is devoid of specific professional figures for the disease
53%
Source: CnAMC-Cittadinanzattiva, 2010 Data collected with the contribution of 48 member associations of CnAMC
In addition, over the counter drug (such as dietary supplements, special foods, creams artificial tears) considered indispensable for the treatment of the disease, but despite this, paid by the patients. The consequence are increasingly costs for families living with chronic patients. Read more
What can citizens Some examples ofobtain success stories relevant to the
as a result of
Many were initiated after suffering unjust treatment. But not for vengeance. Only because others should not go through our same experience
Chronic diseases and bureaucratic problems Chronic diseases and economic problems Chronic diseases and chronic pain Chronic diseases and empowerment of leader of patients organizations Chronic diseases and patients rights
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What we have achieved: After the presentation to the Senate of the Republic, the Authority for Electricity and Gas adopted a new bonuses for seriously ill patients, showing not only to be able to act very quickly on important issues, but also to carefully consider the civic information produced by the associations. Read more
850
Energy bill
482
Source: CnAMC XI Report Cittadinanzattiva, 2012 (The Report comes from data collected from 28 of 86 national associations representing more than 100000 citizens affected by chronic diseases)
944
13.946 855 1.034 1127 1297
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The Civic survey is a necessary step to understand which concrete proposals against pain can be put forward to European, National and local Institutions in order to identify pathways/recommendations against pain according to the patients point of view for a good health policy on chronic pain relief. We are organizing a Patient Meeting in Brussels next October 22-23rd to discuss about it, including professionals, patient association, Ministries of Health. We are working to include this issue in the EU agenda and to submit Civic Recommendations to the vote of the European institutions during the Italian EU Presidency in the 2nd half of 2014.
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On the basis of 14 rights of the EU Charter of Patients 'Rights, drafted in 2002 by Active Citizenship Network in collaboration with 12 citizens' organizations from different EU countries, the more neglected rights for patients with chronic diseases by the National Health System in Italy, with large differences between the Regions are: prevention, right to access, information and time. The Directive on Patients Rights in Cross Border Care creates a clarified legal framework for patients entitlement to seek healthcare in another Member State and to get reimbursed. It also provides a legal basis for enhanced European cooperation in key areas of healthcare including quality, safety, HTA, eHealth and rare diseases. This is an innovative text which formally states for the first time the existence of EU patients rights such as free choice, right to information, to quality of care, etc.
The objective of the conference is to share best practices from different EU countries on:
1. Capacity-building and support of individual patients and their relatives (active participation in the management of care and of all the social, psychological, etc. impacts of chronic diseases) 2. Empowerment of patients organizations through the participation in national and/or European networks (coalitions, platforms, etc.)
The Conference will be held on 17-18th April 2014 (European Patients Rights Day) in Brussels and, of course, all you are invite.