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Monthly Newsletter edited by Cittadinanzattiva-Active Citizenship Network
Civic Activism | Patients' Rights | Consumers' Rights | Support ACN
Year 8th, number 81 - June 2020
Highlight

The European Pillar (with clay feet?) of Social Rights
The contrast to inequalities - which has always been a privileged context of civic commitment for Cittadinanzattiva - seems to be the guiding principle of the European Pillar of Social Rights. Hence the firm adhesion of Cittadinanzattiva to the official invitation addressed to us at the beginning of 2020 by the Directorate-General for Employment, Social Affairs and Inclusion of the European Commission, to collaborate in spreading the contents of the Pillar. This adhesion follows the identification of Cittadinanzattiva as a relevant stakeholder, by the European Commission, in the preliminary meetings held in various countries. Read more

Focus

  

European Civic Prize on Chronic Pain - Collecting Good Practices - III edition 2020-2021. The Application period is open!!!
Active Citizenship Network is glad to launch the third edition of its bi-annual project at the European level “EU Civic Prize on Chronic Pain - Collection of good practices” with the aim of highlighting existing good practices in several European countries in terms of struggle against pain.
This third edition allows us to continue expanding the “agora” of operators of good practices on pain, encouraging the exchange of experiences among health professionals, healthcare providers, Institutions, civic associations, and patient advocacy groups. Exceptionally for this III Edition, the Prize recognizes also outstanding initiatives that have been put in place, modified or updated to face and mitigate the COVID-19 pandemic consequences on chronic pain patients’ life. Read more

   

EUROPEAN PILLAR OF SOCIAL RIGHTS
DG Employment, Social Affairs and Inclusion is pleased to welcome Cittadinanzattiva-Active Citizenship Network between the Ambassadors of the European Pillar of Social Rights. A communication initiative to spread the 20 principles of the Pillar and the importance of a social European dimension.
To know more about the European Pillar of Social Rights and what role the civil society can play in pursuing the aims that the European Commission proposes to reach, Cittadinanzattiva, through Active Citizenship Network, has arranged a brief insight in the form of questions and answers.
Regarding the three aspects addressed, one is related to the current context and to the possible consequences of the pandemic on the implementation of the European Pillar of Social Rights, while the other two - accompanied by a broad premise to better contextualize them – are more specific and linked to some policies attributable to the category "Social protection and inclusion", which are undoubtedly the areas in which Cittadinanzattiva directs its commitment, both at European and, above all, national level.
For the insight arranged, Active Citizenship Network thanks the communication office of the DG EMPL for the support. In particular DG EMPL, involving different Units and colleagues, provided some clarifications on the role of the European Union on key topics for ACN.

European Pillar of Social Rights & COVID-19 emergency
European citizens, as never before, expect from the European institutions support, closeness, solidarity and concreteness. How are the European institutions acting, and what can we expect in the near future - after the COVID-19 emergency has been overcome - to avoid that the 20 principles that make up the European Pillar of Social Rights remain only statements of principle? Read more

European Pillar of Social Rights & chronic pain
At the European level, chronic pain has a major impact on workforce participants and productivity and is not adequately acknowledged nor addressed. How the European Commission, starting from DG SANTE and DG EMPL, intends to involve the Member States to open a dialogue at a national level with all the stakeholders, civic and patient associations, trade unions, business associations, insurance companies, etc, in order to meet the needs of European workers affected by chronic pathologies and diseases? Read more

European Pillar of Social Rights & childcare and support for minors
In Italy, in terms of "Childcare and support for minors", Cittadinanzattiva, thanks to its Prices & Rates Observatory, for over 10 years has been constantly monitoring the accessibility of public (municipal) nursery schools, both economically (rates for families) and availability. What it emerges annually from our dossier shows that, on the side of the municipal nursery service, still many steps must be taken to concretely contribute to reducing inequalities and pursuit the sustainable development objectives in our country. What is envisaged in the context of the European Pillar of Social Rights, to reduce disparities not only between states, but also within the same nation? What actions are planned for the benefit of the populations residing in the individual countries? Read more

European Pillar of Social Rights & the role of the ambassadors
The role of Pillar ambassador regards raising awareness about the European Pillar of Social Rights or one particular aspect of it among their contacts, networks, followers, etc. Ambassadors spread the word and, consequently, contribute to the application of those rights. Read more

More information:
Communication materials produced by the DG EMPL:

- Blue Booklet 
- Brochures
- Social Europe-Your stories
- Posters  1234

EPSR Facebook Group, encouraged to bring together ambassadors, multipliers and stakeholders to share information, thoughts, insights, news and best practices in communicating about a social Europe.

European Pillar of Social Rights & the commitment of Cittadinanzattiva

News
Patients' Rights

The key role played by pharmacies, according to the citizens
Cittadinanzattiva discusses the findings of a recent report into the role played by pharmacies in Italy as a part of the move towards ‘pharmacies of services’. Read the article published by Innovation News Network, the new media partner of Active Citizenship Network.

ACN as a new member of the Judging Panel of the 2020 edition of Italy MSD Foundation’s Patient Digital Health Award
ACN will be one of the only two Patients Association/Civic organization networks at the EU level in the judging committee of the third edition of the Italy MSD Foundation Patient Digital Health Award (PDHA). A unique initiative in which patient groups are the main actors during all the process: from selection, evaluation and finally reward of the best digital innovations, according to patients’ views. This year’s edition will have an EU dimension and will pave the ground to the creation of a European Patient Digital Health Award that MSD Europe will launch in 2021 in Brussels. More information in the July number of ACN's newsletter. Stay tuned!

Communication in primary healthcare: strategies for health promotion and disease prevention
Launched in Portugal, an online survey to collect data for a research project developed in the context of the PhD in Communications, of the Higher Institute of Labor and Business Sciences - University of Lisbon (ISCTE - IUL), in association with the Superior de Comunicação Social - Polytechnic of Lisbon (ESCS - IPL) school (Portugal). Read more

#chronic pain

“We were not born to suffer”: Informative campaign launched in Italy by Cittadinanzattiva
Cittadinanzattiva promotes citizens’ information on palliative care and pain therapy. The Law 38 of 2010, "Provisions for guaranteeing access to palliative care and pain therapy" gives full legitimacy to the "Right to avoid unnecessary suffering and pain" and to the "Right not to suffer unnecessarily" stated in the EU Charter of Patents’ Rights drafted by Active Citizenship Network.
Since the publication of the Law 38, several steps have been taken, but there is still much work to be done for its full implementation. This is why Cittadinanzattiva with its campaign “we were not born to suffer”, proposes and promotes a questionnaire addressed to all citizens to investigate their actual knowledge of the contents of the law and shares an informative leaflet with the main information on the subject. Read more (IT)

SIP Road Map 2019
In 25 surveyed countries, pain is mentioned in only 24% of national research strategies. Patient involvement is not mandatory in 56% of the countries or reported as opportunistic. Comprehensive registries should be established to collect multi-disciplinary data on the Impact of pain. Click here to read more on the results of the SIP European Road Map Monitor 2019.

E-G-G: Launch your Career in Pain Research
Are you a scientist under the age of 40 looking to advance your career in pain research? Do you want to pursue your own line of research? Would you like to connect with the international pain research community? If so, you should apply for the EFIC-Grunenthal-Grant (E-G-G) 2020 right away! Read more

2020 Global Year for the Prevention of Pain 
This year's theme focuses on disseminating pain prevention strategies to researchers, clinicians, and patients. Watch the video message focused on the role of prevention and “zero pain”, coming from the leader of the Chronic Pain Patients Association of Azores, Portugal, partner of Active Citizenship Network, able to contextualize the issue of pain in the framework of the EU Charter of Patients’ Rights, drafted by ACN in 2002.

#Covid-19 & #chronic pain

Pain: A potential new label of COVID-19
Some evidence seems to suggest that SARS-Cov-2 could cause pain, both directly (by acting on some molecules in the spinal cord) and indirectly (through the damage of body tissues). As EFIC suggests, the European association for the study of pain, the clinical data supporting these hypotheses are still few and some of the studies that underlie them have been performed on animal models that do not always adapt well to the man. Nevertheless, the onset of pain in surviving patients will be an element to be carefully monitored (and managed). Read more

Images in Practice: Painful Cutaneous Vasculitis in a SARS-Cov-2 IgG-Positive Child
The spread of severe acute respiratory syndrome coronavirus-2 (SARS-CoV-2) during the ongoing coronavirus disease 2019 (COVID-19) pandemic has been particularly high in Italy. In Italy, as in the rest of the world, extremely rare cases of infection have been seen in the pediatric population. Read more

Manual for the treatment of pain in COVID-19 patients
Produced by RED: pain therapy network of Milano of the Niguarda Hospital, the manual “The complex choice of the doctor in therapeutic management Practical tips and main drug interactions for the treatment of pain, analgo-sedation, delirium, state of anxiety and insomnia in patients COVID-19" was written in the full pandemic period as a useful support to all specialist operators and GPs, as well as indirectly to citizens and patients. The person in charge of the document - also published by the Milan Medical Association - is dr. Paolo Notaro, Pain Care Unit Director Niguarda Hospital, as well as winner of the European Civic Prize on Chronic Pain - Collecting Good Practices - II edition 2018-2019 led by ACN. For the download, click here

Chronic Pain Patients ‘Hanging on by a Thread’ During Coronavirus Lockdown
Pain News Network, the International Pain Foundation and the Chronic Pain Association of Canada conducted an online survey with 2,221 people with chronic pain or chronic illness and the vast majority of respondents from the United States or Canada. Read more here and here.

Covid-19 and chronic rheumatic pain: "Never suspend therapies"
Dangerous to stop or reduce medications. In Italy the first Covid Registry in the world to monitor the impact of the pandemic on 5 million patients afflicted with chronic rheumatic pain. Read more and watch the interview (IT) to the President of the Italian Society of Rheumatology (SIR).

COVID-19: FPM guidance on resumption of pain services
In UK, the Faculty of Pain Medicine of the Royal College of Anesthetists has published Guidance on resumption of pain services following disruption by the COVID-19 pandemic. The guidance highlights considerations to help achieve the reset of pain services locally from both strategic and operational perspectives. The content of this guidance was partly informed by the preliminary findings of a recent survey of Fellows and Members, the first of a series of situational surveys to capture the ongoing impacts of COVID-19. To know more and download the document, click here.


National Pain Relief Day: Video call consultations and remote consultations with specialists
Sunday 31 May 2020 was the XIX National Relief Day, an event aimed at raising awareness of painful syndromes; there are almost 8 million people in Italy suffering from chronic pain according to the latest Istat data. Precisely for this reason the pain therapy specialists of the Niguarda hospital in Milan have made themselves available to all those who need information on their pain syndrome and on available treatments, and guidance on which are the pain therapy centers to which one can address to. The initiative was also attended by “No Pain Onlus”, an association with which the European network of Cittadinanzattiva, Active Citizenship Network, has started a partnership path. Read more

Online seminar on chronic pain and COVID-19
The initiative, promoted by Cátedra del Dolor Fundación Vithas-CEU, was addressed to the medical students of the Universidad CEU-Cardenal Herrera and saw the participation of over 250 students. Read more (ES)

COVID-19 and your Chronic Pain: Survey at the EU level
We are aware that the COVID-19 pandemic has an impact on everyone’s lives, which includes people with chronic pain. Pain Alliance Europe (PAE) is interested in finding out from chronic pain patients what is worrying them and, therefore, has created an online survey on this topic. As Board Member of PAE, Cittadinanzattiva, through its EU branch Active Citizenship Network encourages to fill this survey as soon as possible! The results will be presented at the PAE General Assembly on June 24th!

Complete the EFIC COVID-19 Survey
As a response to the global pandemic, EFIC has created a COVID-19 task force with the intended outcome to distribute relevant news on our website and other communication channels.
A survey has been created for healthcare professionals working in the field of pain, by the European Pain Federation (EFIC). PAE and EFIC will share the results of their two surveys and work closely together for improvements of care for pain patients. Click here for the EFIC Survey.

Palliative Care - get to know them better
On June 2, in Lisbon, was made online, the symbolic launch of the essay for the F. Manuel dos Santos Foundation called “Cuidados Paliativos – Conheça-os melhor” (Palliative Care - get to know them better) written by Dr.ª Isabel Galriça Neto.
The debate focused on explaining the pillars of palliative care: symptom treatment, family support, multidisciplinary team and bereavement. The importance of this care at this time COVID-19 is greater because they transform the reality of people and families, applying the philosophy of attendance to the most difficult situations and moments, such as mourning in cases of patients who were not with their families and they couldn't say goodbye to them. Read more (PT)

#Covid-19

A fairer future is possible. Memorandum for post Covid-19 in Italy
The Forum on Inequality and Diversity, a “Think and Do” Alliance/Network of which Cittadinanzattiva is Board Member, outlines the strategy for a fairer future. While some cases are specific to Italy, the commonality of the problems have led us to believe our blueprint to be useful for a wider audience. In what follows, ForumDD identified the main inequalities and structural weaknesses brought to the fore by the crisis. Despite the systemic uncertainty that is still with us, we also attempt to pin down the social, economic, and institutional trends triggered by the crisis. This allows us to identify the many bifurcations ahead of us and to propose seven short-term actions and five strategic objectives supported by concrete proposals. Read more (EN – IT) and download the document (EN – IT version).

EU: ACN & civic activism experiences in the pandemic era
Many are the types of civic activism in these months during the pandemic. Make your experience known! Continue sending us video messages, stories and testimonies of civic commitment & protection of rights at the time of the pandemic, write to us at brussels@activecitizenship.net.

REUMAVID survey: questionnaire on the consequences of the covid-19 pandemic on people living with rheumatic conditions
REUMAVID survey aimed at people living with rheumatic diseases who are experiencing lockdown due to COVID-19. The aim of the REUMAVID study is to describe the consequences of the COVID-19 pandemic on the evolution of the disease, support services, healthcare, the quality of life and the emotional well-being of people living with rheumatic diseases. REUMAVID study is being conducted simultaneously in seven European countries (Cyprus, France, Greece, Italy, Portugal, Spain and the United Kingdom) in order to better understand the effects of COVID-19 on people living with rheumatic conditions by providing an international perspective. Read more

Network News

Malta Health Network & the European Patients’ Rights Day 2020
On the occasion of the European Patients' Rights Day, the Malta Health Network showed its solidarity with all the patients who have chronic conditions, and whom, prior and after the Covid Pandemic, will still keep facing many difficulties including isolation. Hold on, you are not alone! Watch the video

Events

Virtual Ceremony:  24th June 2020 “BMP Grant 2019-2020”
As a Jury Member, Active Citizenship Network will participate to the initiative promoted by Pain Alliance Europe. The Grant Ceremony is the last milestone of the EU project “Mind and Pain Patient-Centered Innovation Grant STOP Stigma! Reduce stigma to improve quality of life for brain, mind, and pain patients” (BMP Grant 2019-2020), marking the end of the evaluation period and the announcement of the winner(s). To participate, click here. Read more

Virtual Advisory board: 7-8th July 2020 “EU Non-Communicable Disease summit”
Active Citizenship Network has been invited to the panel of the above mentioned summit which are: a) Identify how the Partnership Model between public and private sectors and policy makers can be best used to improve health outcomes for NCD patients; b) Discuss ways in which the COVID-19 pandemic has changed current and future care of NCD patients; c) Determine current barriers and future directions for increasing adherence and integrated care for NCD patients through innovative approaches.

#StaySafe

 


Director and Editor in chief: Mariano Votta
Editors: Daniela Quaggia, Federico Foti, Giulia Decarolis e Maira Cardillo
Coordination and Production: Giacomo D'Orazio 

To contribute, plase write to: mail@activecitizenship.net
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