The Engagement of Cittadinanzattiva in the Fight against Useless Pain

Cittadinanzattiva has a more than 30 year experience in the protection of citizens' rights in the health sector, which initiated with its Tribunale per i diritti del malato ("Tribunal for Patients' Rights" or TDM) in 1980 and was later strengthened through the Coordinamento nazionale Associazioni Malati Cronici (National Coordination Centre of Chronic Patients' Associations) in 1996.

Over the last 20 years, it has been increasing its contributions for the promotion and protection of citizens' right against useless pain though the following strategic actions:

 

  • Protection against violations of the right of individual citizens, trough its free-of-charge counselling, information and support service provided by 300 TDM offices located nationwide.

  • Collection and dissemination of best practices with many editions of national prizes on humanization and pain.

  • Promotion of information and awareness raising campaigns for the citizenry.

  • Actions designed to promote cultural changes, though panels organised with health workers, health corporations, institutional representatives; national conferences on pain (5 conferences as of today's date with an annual frequency; a "Surgery Quality Charter" and an "Internal Medicine Quality Charter").

  • Institutional mediation, aimed at strengthening the protection of rights (e.g. the 2008 Civil Recommendation on Non-Oncologic Chronic Pain, its action in favour of the abolition of the special prescription pad for narcotics, and the promotion of pain-free hospice care).

  • Production of citizens' information, i.e. information directly produced by citizens, "based on their point of view, starting from the data directly or indirectly acquired and meant for changing the current state of affairs with a view to effectively improving the protection of citizens' rights and achieving conditions for effective protection" by means of follow-ups, enquiries and citizens' audits.

A few of Cittadinanzattiva's promoted and implemented initiatives

1997/ongoing  National Prizes on Pain
Over the years, Cittadinanzattiva has established specific national awards for the humanization of medical treatment and fight against pain:


2002 - "Let us abolish forced pain"
This citizen information campaign on pain was organised and promoted in 2001. Its fundamental objective was dispelling any false myths on the tolerability and incurability of pain for a few population groups in particular (e.g. the elderly), and discussing the prescriptibility of narcotics.


2005 - "Charter of Rights against Unnecessary Pain"
The Charter of Rights against Unnecessary and Useless Pain was first promoted by Cittadinanzattiva in 2005. Its objective is to declare and protect a group of rights, 8 in total, that are still often violated and consequently obtain treatment in order to remedy e.g. the sufferance felt at any time of a disease -by the elderly, children, etc. – in the performance of invasive examinations (so that reported pain will not be minimesed, but rather into account and suitably treated), to only quote an example.


2008 - "We are not born to suffer" Campaign
This awareness raising campaign was promoted in 2008 though the creation of info points in the squares of 40 Italians cities. Its objectives included: to supply communication instruments to facilitate dialogue between physician and patients and to favour opportunities between healthcare workers and all professionals involved in the diagnostic and treatment of chronic pain.


"Against Useless Pain"
A report on the respect of the 2005 Charter of Rights. A few activists of Cittadinanzattiva monitored the state of implementation of the Charter of Rights against Useless Pain in 33 Italian hospitals and health centres, by involving citizens and healthcare workers.


2008 -Civil Recommendation on Non-oncologic Chronic Pain
The Recommendation is the result of dialogue between citizens and experts in matters related to pain treatment over 3 days of workshop organised in 2008. Its purpose was to make a real contribution for the development of protection policies intended to overcome the main criticalities identified in the treatment of non-oncologic chronic pain. It was called "civil" as it originates from the choice of enhancing the "citizen's standpoint" in the identification of action to be recommended to each institution, organisation or person concerned with pain treatment. The contents of the Recommendation were also reproduced in law no. 38/2010.


2010/ongoing Implementation of the Italian Law 38/2010
Our direct involvement & contribution with data in drafting the National Report written by the Ministry of Health to the Parliament on the state of implementation  of the Italian Law 38/2010, that assures the citizens' right to have access to palliative care and to antalgic centres in case of either oncologic or non-oncologic pain. Download the Annual report 2010 and 2011 (IT language).
Last 7th of June 2016, Cittadinanzattiva presented his document, from the patients’ point of view, about the implementation of the Law 38/2010 on chronic pain, during an hearing of the Committee for Palliative Care and Pain Therapy of the Italian Ministry of Health. Read the document (IT language).
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2010 - "We are not born to suffer, Chronic pain and healthcare experiences". Campaign
With the direct involvement of general practitioners, managers of pain treatment centres, patients treated at these centres and chronic patients, the requirement were identified of persons suffering from chronic pain, and available healthcare services were examined from a citizen's standpoint; the main faults of the system and – concurrently – example of best practice were also identified.
Another important fact-finding contribution in terms of social and healthcare impact of pain treatment methods on the lives of citizens came from the Annual Pit Salute Reports (1997-2012), the Annual Reports of Cittadinanzattiva's National Coordination Centre of Chronic Patients' Associations, the two Integrated Hoe Care Reports (2006 and 2008), the Oncologic Home Care Report (for years 2004 and 2005), and the Citizens'Audit Report (for years 2000-2010).


2010 - Pain Proposal “Improving the Current and Future Management of Chronic Pain”
As members of the Pain Proposal Steering Committee, we have contributed to develop the Report “Improving the Current and Future Management of Chronic Pain”.
Download the final report in pdf here


2012 - "In-dolore" Campaign
With the Campaign "In-Dolore" (painless), started in the second half of 2012, Cittadinanzattiva wants to dispel taboos and offer advice, information and protection to citizens on what to do and what to expect, at home, from the family doctor, medical facilities, in order to don't suffer needlessly.
The campaign also provides instructions for using the Italian Law n.38 of 2010 which, although unknown to most people, is a law forefront in Europe and defends us from unnecessary pain.
The campaign develops initiatives in many Italian cities, where volunteers of the Tribunal for Patients' Rights will be available to the public, to give information and advice about their rights. During these occasions, will be distributed free the practical guide "In-Dolore" (painless), also available online in the Cittadinanzattiva website.


2014 “In-dolore 2nd Edition” Project
A pilot civic audit in the Italian hospitals about treatment and attention to pain. Promoted by the Tribunal for Patients’ rights  and realized in collaboration with the Civic Evaluation Agency to monitor citizens’ perspectives about treatment and attention to pain as well as the presence of fundamental services, features and best practices in the Italian hospitals. Goals of the project were: build a network and promote centres of excellence, draw attention on the topic and encourage a healthy competition among healthcare providers to improve pain treatment on the basis of citizens’ needs. Indeed, the project has informed citizens about attention to pain provided by 46 Hospitals that have voluntarily submitted to: detailed data are available online. 214 wards have been monitored and 711 patients have been interviewed, thanks to the help of our volunteers. Data have been collected through two main tools: a checklist containing 50 items and a questionnaire addressed to patients of 5 key wards. Methodology and results of the project will be officially presented at the European Parliament in April and May. For more details  (IT language). In 2016, the project was presented at the EU Parliament as good practice.


2016 - Implementation of the Italian law on chronic pain: the report of Cittadinanzattiva to the Ministry of Health
On the 7th of June Cittadinanzattiva presented his document, from the patients’ point of view, about the implementation of the Law 38/2010 on chronic pain, during an hearing of the Committee for Palliative Care and Pain Therapy of the Italian Ministry of Health. Read the document (in Italian).


2016 - Pain Therapy & Palliative Care: Cittadinanzattiva in the technical committee of the Italian Ministry of Health
In Italy there is a section of the Technical Committee on Health of the Ministry of Health devoted to pain treatment, that is an organization bringing together 204 experts for advice and support in policies covering different areas of health and science. One section in particular focus on palliative care and pain management and the member who represents the citizens' associations is now the national coordinator of the Tribunal for Patients' Rights of Cittadinanzattiva. To Read more (IT language)

 

A few promoted and implemented initiatives of the European branch of Cittadinanzattiva,
Active Citizenship Network

2002 -  The issue of pain in the European Charter of Patients' Rights
The European Charter of Patients' Rights was drafted in 2002 by Active Citizenship Network in collaboration with citizens' & patients organizations from 12 different EU countries. The European Charter of Patients' Rights states 14 patients' rights that together aim to guarantee a "high level of human health protection" (Article 35 of the Charter of fundamental rights of the European Union) and to assure the high quality of services provided by the various national health services in Europe.
The 14 rights are an embodiment of fundamental rights and, as such, they must be recognised and respected in every country. They are correlated with duties and responsibilities that both citizens and health care stakeholders have to assume. The Charter applies to all individuals, recognising the fact that differences, such as age, gender, religion, socio-economic status etc., may influence individual health care needs. 
Art.11 of the European Charter of Patients’ Rights clearly establishes the Right to Avoid Unnecessary Suffering and Pain: “Each individual has the right to avoid as much suffering and pain as possible, in each phase of his/her illness”. Read more


2011/ongoing - ACN in the Board of Pain Alliance Europe
The Director of Active Citizenship Network has been elected in the Board Member of PAE-Pain Alliance Europe. He was re-elected during the last General Assembly of PAE celebrated on February 23rd 2016 in Bruxelles. To know more about PAE, click here


2012-2014 - Pain Patient Pathway Recommendations 
A three years multi-stakeholder project realized by  Active Citizenship Network in partnership with Pain Alliance Europe in 18 European countries. The main objectives were: realize a civic assessment on chronic pain policies in the EU countries; create a greater awareness of chronic pain; promote a European policy on chronic pain and reduce the impact of chronic pain on all areas of European society. 
The projects outcomes include the development of the Report on the Assessment of the EU Patient Right of Avoiding Unnecessary Suffering and Pain and the publication of  the EU Pain Patient Pathway Recommendations. For further information, please see our website.

 


2014 - EU civic research: collection of good practices on chronic pain - “Making the invisible visible”
In 2014, Active Citizenship Network realized a research-project at the European level with the aim to give evidence on existing good practices in several European countries in terms of struggle against pain. The aims include raising awareness about the phenomenon, enhancing the body of knowledge of positive experiences and success, and strengthening the commitment to this topic.
The results of the projects were presented in a EU conference “Chronic pain: making the invisible visible. European collection of good practices” on October 2nd, during the Italian EU Semester of Presidency (July-December 2014), in Brussels. The event involved participants from 17 European Countries and from various background (leader of patients' organizations and representatives of health-focused NGO, healthcare professionals and their EU Networks, policymakers from Member States and UE Institutions and public relations agencies). Please see the report and the abstract and the conference programme.

 


2015 - ”EU Civic Prize on Chronic Pain - Collecting good practices”
In 2015, Active Citizenship Network  launched the first edition of the ”EU Civic Prize on Chronic Pain - Collecting good practices”. The aim was to give evidence of existing good practices in European countries in terms of struggle against pain. This initiative allowed us to collect 30 Good Practices received from 11 different countries: Malta 2; UK 6; Spain 8; Portugal 2; Ireland 1; Italy 6; Germany 1; Denmark 1; Finland 1; Netherlands 1; Russia 1. All the received Good Practices has been collected and published within this final Report

 

The Award Ceremony has been celebrated during the SIP - Societal Impact of Pain Symposium 2017 – that  has been held in Malta on June 8/9 2017, during the Maltese Presidency of European Union. It represented the recognition of ongoing excellence at the presence of the President of Malta H.E. Marie-Luise Coleiro Preca. The winners received an expenses-paid visit to another winner, and a publication in English on the Health Management Journal.

Visit the photo gallery here.

Here you can download the Final Report with all the gathered good practices, the videos of the winners, and the Press Release of the Prize Ceremony.


2015/ ongoing - Involvement in “Societal Impact of Pain” (SIP)
In December 2015 the “Societal Impact of Pain” (SIP) has officially included in its Steering Committee the citizens and patients’ points of views by inviting ACN to be part of it. Since SIP Symposium 2016, Active Citizeneship Network is officially recognized as cooperation partner of the initiative.


2016 Sine Dolore Excellence Award”: ACN awarded for his commitment in the fight of unnecessary pain
Active Citizenship Network received the award, promoted by Efhre International University (EIU)and Sine Dolore, in the “Organizaciones Sociales” category for its work against pain. Mariano Votta received the award on the 7th of May during the Closing Gala of the Sine Dolore Pain Meeting in Menorca, Spain. More information here.


2016 - Pain Therapy and the Degree of Patient’s Pain in the Age of Cross-Border Healthcare Conference
Article 8.5 of the Directive 2011/24/EU states that the degree of patient’s pain must be taken into account in the process of the cross-border healthcare treatment authorization. Member States should have transposed the Directive into their national legislation by October 2013 and, consequently, should have put in place mechanisms to assess the patient's level of pain. The conference, hosted in the framework of the EU Parliamentary Interest Group "European Patients' Rights & Cross-Border Healthcare", aimed to underline how the protection of patients' rights seeking care abroad is also related to an effective implementation of those aspects of the Directive that may be seen of little importance, such as, for example, the reference to pain intensity. Pain intensity is not a secondary issue at all; it can facilitate the building of a European network of specialised centres or centres of excellence on pain therapy, which may host patients from other countries, in accordance with the hopes revealed during the Italian Presidency of the Council of the European Union, in the second half of 2014. To read more


2016 - Pain Euro-Mediterranean Coalition
Image result for sine dolore spain In June 2016, Sine Dolore European Pain Foundation and Active Citizenship Network launched and promoted the “Pain Euro-Mediterranean Coalition ,” during the event realized at the EU Parliament “Pain therapy and the degree of patient’s pain in the age of cross-border healthcare .” The Coalition received the support of the MEPs Interest Group “European Patients' Rights and Cross-border Healthcare ”. The Coalition is neither a new association nor an EU umbrella organization, but is regarded as the “the first civic Hub-incubator of best practices against pain across Europe,” an informal network composed by manager concretely engaged to carry out good practices across Europe. In particular, the associations included in the coalition have committed themselves to improve quality of life for people suffering from acute and severe chronic pain, raise awareness, fight stigma, and above all  to reduce the socio-economic impact of chronic pain in Europe by ensuring that the right to avoid unnecessary suffering is guaranteed everywhere and to everyone.
Read more on the Pain Euro-Mediterranean Coalition here .


2016 - The Involvement of ACN in “Societal Impact of Pain” (SIP)
Image result for sip platformIn the context of the SIP 2016, ACN has been mainly involved in the Working Group 1 titled "Pain as a quality indicator for healthcare". Because of its efforts in the fields of the protection of patients' rights and cross-border healthcare, ACN was entrusted with the secretariat of the Working Group 1.
ACN, EFIC, PAE and Grünenthal conducted a research amongst their members and affiliates in order to assess the level of implementation of Article 8(5) of the Directive 2011/24/EU on patients’ rights in cross-border healthcare in Europe in respect of pain. You can download the main results of the research here .
Download the Policy Brief related to the working group 1.
Read more about ACN’s involvement in SIP 2016 here .


2017 - Memorandum of Understanding between Pain Alliance Europe and Active Citizenship Network signed
On November 21st, 2017, in Bruxelles, Pain Alliance Europe and Active Citizenship Network officially signed a Memorandum of Understanding on the cooperation between the BMP Patient Centred Innovation Grant, managed by PAE, and the European Civic Prize on Chronic Pain, managed by ACN. This agreement reinforced the already strong cooperation in the field on chronic pain between the two organizations and, above all, allowed them to better merge their initiatives.
  


2017 - The involvement of Active Citizenship Network in SIP
ACN was involved as cooperation partner in the context of the Societal Impact of Pain Symposium (SIP) 2017 , held in Malta on the 7-8-9 of June, 2017. (The scientific framework of the SIP platform is under the responsibility of the European Pain Federation EFIC®. Co-operation partners for SIP 2017 are Pain Alliance Europe and Active Citizenship Network.) The SIP 2017 symposium was co-hosted by the Malta Health Network, partner of ACN and the No Pain Foundation.
On June 7th, ACN was involved as expert panelist in two workshops: GAfPA’s “Effective lobbying for pain and SIP advocates” workshop, and Pre-Symposium “The Societal Impact of Pain on Malta” workshop.
On June 8th ACN celebrated in the SIP 2017 framework the Award ceremony of its project the “European Civic Prize on Chronic Pain - Collecting Good Practices
Moreover ACN was mainly involved as secretary of the Working Group 2, entitled “European and national platforms addressing the societal impact of pain”, after which ACN played a key role collaborating in the developing of the conclusions papers. These conclusions has been presented and ratified at the symposium plenary on June 9th, 2018.


2018/ongoing - Second Edition of the “European Civic Prize on Chronic Pain – Collecting Good Practices”
flyer In 2017, Active Citizenship Network launched the second edition of the bi- annual research-project at the European level, entitled “EU Civic Prize on Chronic Pain - Collection of good practices ,” aiming to continue to  give evidence on existing good practices in several European countries in terms of struggle against pain. In particular, this second edition allows ACN to give continuity to the successful collection of good practices in the struggle against pain started by ACN in 2015 and 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.
The award is open to any healthcare stakeholder: patients’ associations, health professionals, private and public hospitals, universities, etc.  Each project will be considered for a public European celebration when the prizes are awarded  and will represent the recognition of ongoing excellence. The award ceremony will take place in 2019.
Here the project leaflet , the flyer , and the link to the form !
Please find more information on the EU Civic Prize here .


2018 - Making visible the invisible on Headache Pain: sharing successful experiences across Europe
On January 24th, 2018, Active Citizenship Network, in partnership with the European Headache Alliance  (EHA), organized a meeting at the European Parliament. The initiative “Making visible the invisible on Headache Pain ” consisted in selecting good practices and sharing them during a European event focused on migraine and headache pain, taking into account the important innovations in the field of fight against pain.
This initiative was intended to:

  • explore recent achievements and good practices across Europe, also outside EU Member States, on the management of some primary headaches, in particular migraine and cluster headaches.
  • demonstrate what this community can offer in terms of raise awareness about the phenomenon, enhance the body of knowledge of positive cases and success, and strengthen commitment to this topic.
  • promote a first civic assessment on the management on headache pain, it means an assessment that starts from a citizens and patients perspective.

2018 - Artist against pain: A way to make visible the invisible on chronic pain through the arts
Artist against Pain ” was a cultural event realized on March 17th, 2018, in Milan, Italy.
The initiative aimed to link artists and advocacy groups on the topic of chronic pain, and was promoted by the artistic cultural association “ Bioforme ” in partnership with the European branch of the Italian NGO  Cittadinanzattiva Active Citizenship Network , the Maltese association "No Pain Foundation ", and the patronage of Municipality 8 of the City of Milan. The event was an occasion to raise awareness on the topic, share patient testimonies, present good practices, debate an overview of the situation across Europe, show news on the commitment of the EU Institutions on the topic and the most recent achievements. Even if far from any institutional context, the event revealed to be an opportunity to approach the topic and to promote a reflection at different levels, such as the medical-political-social on one side and the musical-artistic on the other.
The videos of the cultural event can be found online on the FB page of Bioforme .
Other useful links:

   


2018 - From local to global: promoting societal impact of pain “SINE DOLORE WORLD PARK”
The event took place on April 26th, 2018, at the European Parliament. It was hosted by the MEP Rosa Estaràs Ferragut  and organized by Sine Dolore European Pain Foundation  in partnership with Active Citizenship Network. The initiative represented at the same time a point of arrival and a point of departure for the organizers of the Sine Dolore European Pain Foundation, especially Prof. Jordi Moya, to whom the merit of having always believed in this initiative.
The aim of the initiative was to present to the EU Institutions and stakeholders the unique experience of the SINE DOLORE WORLD PARK , the first theme park in the world against pain and for the quality of life. During the event people shared and discussed other awareness experiences as well as their contribution to promote a societal impact of pain.
Please read more on this initiative here .


2018 - Making visible the invisible on Chronic Pain: sharing successful experiences from Spain to Europe
On May 6th, 2018, in the Island of Menorca (Spain), the Sine Dolore European Pain Foundation and Active Citizenship Network organized the first Annual Meeting of the “Pain Euro-Mediterranean Coalition “ which was entitled “Making visible the invisible on Chronic Pain: sharing successful experiences from Spain to Europe .” The aim of the event was to facilitate the exchange of experiences among the managers of good practices in the area of chronic pain and to explore how to promote these win experiences at the EU level.  Indeed, the event was an occasion to share best practices at the EU level and put the premises to develop policy recommendations at national level thanks the great participation of Spanish advocacy groups dealing with the topic. The event was promoted in the framework of the IV edition of the “SINE DOLORE WORLD PARK," the unique theme park in the world against pain and for the quality of life.

Please read more on this initiative here .

  


2018 - “Rehabilitation and reintegration of Patients with Chronic pain and Fibromyalgia in the work force”.
On May 12th, 2018, Active Citizenship Network was invited to the ENFA General Assembly and high level conference entitled “Rehabilitation and reintegration of Patients with Chronic pain and Fibromyalgia in the work force” in Malta. The conference took place under the auspices of HE the President of Malta Ms Marie-Louise Coleiro Preca. In that occasion, ACN and the European Network of Fibromyalgia Associations (ENFA) communicated their strengthened partnership in the field of pain relief.


2018 - Educating and Empowering Patients In Malta
On June 9th, 2018, in Gozo (Malta), Active Citizenship Network participated as speaker in two conferences organized by the new-born “National Patients' Organisation-Malta ” to empower leaders of advocacy groups and citizens in the healthcare sector. Starting from the experience of the “European charter of patients' rights ”, the meeting was also an occasion to provide evidence about the respect of patients' rights when dealing with various causes and illnesses and avoid unnecessary pain across Europe.


2018 - “Together by Pain”
In September (data?), Active Citizenship Network  participated as partner to the “Together by Pain”, opened to national patients associations with chronic pain. The initiative was organized by the Portuguese  Associação de Doentes de Dor Crónica dos Açores, ADDCA  and the portuguese MEP Sofia Ribeiro , and it received the endorsement of the MEPs Interest Group “European Patients’ Rights & Cross-Border Healthcare ”. 


2018 - Partnership between ACN and World Federation of Incontinence and Pelvic Pain (WFIP).
Active Citizenship Network created a partnership with WFIP , a federation for people living with incontinence and pelvic floor dysfunction, comprised of patients’ associations, doctors, on-government organizations, and non-commercial entities.

 


2018 - Brain, Mind, and Pain Patient-Centred Innovation Grant
In 2018, Active Citizenship Network participated as member of the jury of the BMP Grant , initiated by Pain Alliance Europe and supported by Grünenthal Group with the main aim of encouraging patient-centred innovation having, as a result, the improvement of the life conditions of pain.


2018 - “Pain Policy Advisory Board”
In 2018, we became official members of this multidisciplinary expert group, comprised of patient advocacy organizations and clinicians, through which we contribute at the European level to identify core policy issues and solutions for optimal management of chronic pain in general & chronic low back pain in particular. 

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