AVOID A CHRONIC PAIN AS A PATIENTS’ RIGHT Teresa Petrangolini Active Citizenship Network - PAE

Disclosure Statement of Financial Interest I, Teresa Petrangolini DO NOT have a financial interest/arrangement or affiliation with one or more organizations that could be perceived as a real or apparent conflict of interest in the context of the subject of this presentation.

Pain Alliance Europe Mission: to improve the quality of life of people living with chronic pain Aims: 1.To have chronic pain recognised as a desease in its own rights 2.To create a greater awareness on chronic pain 3.To promote a European policy on chronic pain 4.Reduce the impact of chronic pain on all areas of European society The voice of people with chronic pain

The point of view of citizens Cittadinanzattiva An Italian citizens’ organization started in 1978; Defense of citizens’ rights and the promotion of civic participation in Italy and in Europe; Some members, voluntaries. 34 years of experience Active Citizenship Network (ACN) A European network started in 2001 Promotes the participation of citizens’ organizations in European and national public policies European Charter of Patients’ rights and European Patients’ rights Day Over 100 partner organizations from 30 European countries. Pae member

The point of view of citizens

Right to avoid unnecessary pain

Stop pain as one of our main policies Every individual has the right to know that pain does not necessarily have to be put up with and that much suffering can be alleviated by adopting the right treatment. Pain should be eliminated or at least reduced in all those cases where it is possible to do so, given its significant influence on the quality of life. The right not to suffer unnecessarily must be recognised and respected, always and everywhere in hospital wards and in long term care facilities, in the patient’s home.

Our commitment Protection of individual rights’ violation Collection and dissemination of Best Practices Information campaigns to sensibilize citizens Cultural change promotion programs Lobbying Civic information and assessing Charter of rights

Charter of rights on unnecessary pain (2005) The “Charter of rights on unnecessary pain” sets out to inform citizens about pain and promote its prevention, control and treatment; The operatively of the Charter is entrusted to citizen’s organisations involved in safeguarding health rights, as well as healthcare professionals and the various institutional bodies exerting governing responsibilities at different levels. It was promoted after a success campaign: Stop forced pain!

Charter of rights on unnecessary pain 1. Right not to suffer unnecessarily Every individual has the right to have their pain alleviated as efficiently and rapidly as possible. 2. Right to acknowledgement of pain Every individual has the right to be listened to and believed when reporting personal pain. 3. Right to access pain therapy Every individual has the right to access the treatment needed to alleviate their pain. 4. Right to qualified assistance Every individual has the right to receive pain assistance, in observance of the latest, approved quality standards. 5. Right to continued assistance Every person has the right to have their pain alleviated continuously and assiduously throughout all phases of illness. 6. Right to a free, informed choice Every person has the right to actively participate in the decisions made regarding their pain management.

Charter of rights on unnecessary pain 7. Rights of children, the elderly and those “without a voice” Children, the elderly and “sensitive” subjects have the same right not to suffer unnecessary pain; special consideration should be given to their particular status. 8. Right not to suffer pain during invasive and non-invasive diagnostic tests Anyone having to undergo diagnostic tests, especially those which are invasive, must be treated in such a manner as to prevent episodes of pain.

Main concerns denunced by patients in Italy lack of information and access to chronic pain treatment, lack of pain therapy centres dedicated to the management of chronic pain and the complexity of the pain pathology, poor training of the patient in chronic pain management the fragmentation of patient care pathways. From here arose the opportunity of working together in an atmosphere of reflection and analysis with a group of people who are particularly interested in the topic of chronic non-cancer pain, with the aim of recommending proposal to all those institutions, medical and scientific societies and public bodies and to move towards an announcement of a joint commitment on the issue.

PUBLIC PROPOSALS on Chronic Non-Cancer Pain 2010 Recommendations in collaboration with Federdolore Fimmg Siaarti Simg and 12 chronic disease patients organizations Proposals for the ORGANIZATIONAL MODEL OF PAIN MEDICINE First level of care: Regional Second level of care: Hospital Third level of care: Centre for Pain Therapy Proposals for TRAINING COURSES Proposals for ESSENTIAL LEVELS INFORMATION AND COMMUNICATION

2012 Campaign Target: citizens Tools: usefull guide for citizens, handbook for volunteers Aims: - construction of a widespread culture on the right to prevent unnecessary suffering - diffusion of the new Italian law (L.38/10) knowledge -Promotion of partnership between the stakeholders (Health Ministry, Grunenthal, general pratictioners, specialists, patients’ associations)

Contents and items of the campaign (examples) Pain management in the hospital and in the home care services Glossary of usefull words to know Guide for services and location the support networks: for palliative care, for pain therapy, for children pain, etc.

We are not born to suffer! Thank you very much for your attention!