Sunday, 07 February 2016 11:05

EUROPA DONNA

THE EUROPEAN PATIENT ADVOCACY PERSPECTIVE ON SPECIALIST BREAST CANCER UNITS AND ACCREDITATION

EUROPA DONNA’s Ten Goals
1. To promote the dissemination and exchange of factual, up-to-date information on breast cancer throughout Europe.
2. To promote breast awareness.
3. To emphasise the need for appropriate screening and early detection.
4. To campaign for the provision of optimum treatment.
5. To ensure provision of quality supportive care throughout and after treatment.
6. To advocate appropriate training for health professionals.
7. To acknowledge good practice and promote its development.
8. To demand regular quality assessment of medical equipment.
9. To ensure that all women understand fully any proposed treatment options, including entry into clinical trials and their right to a second opinion.
10. To promote the advancement of breast cancer research.

AUTHOR: Susan Knox, Executive Director, EUROPA DONNA
EUROPA DONNA – The European Breast Cancer Coalition has been advocating for all women to have access to care in specialist breast units since 2003.
Two European Parliament Resolutions, (2003 and 2006) as well as the Written Declaration against breast cancer in the EU of 2010 called on member states to ensure that all women in the European Union have access to treatment in such units set up in accordance with the "European Guidelines for quality assurance in breast cancer screening and diagnosis," by 2016. Once mammography screening implementation according to EU Guidelines commenced, it became evident that it would be essential to have high-quality units where women would receive specialised treatment upon diagnosis. Europa Donna was a member of the revision committee for Chapter 9 of the 4th edition of these Guidelines (2006) which provided a detailed description of these services as previously defined by EUSOMA. Moreover, the 2010 Written Declaration on the fight against breast cancer in the EU called on the Commission "to develop a certification protocol for specialist breast units in accordance with EU Guidelines by 2011".
The most important thing for a woman diagnosed with breast cancer to know is where to go to get the best treatment, i.e. she needs to know that the clinic or unit is accredited as having implemented appropriate quality standards that meet EU Guidelines thus ensuring provision of high level breast services, and that her national health system will pay for it. Progress on accomplishing this has not moved quickly, nor has it been accepted by all stakeholders involved.
EUROPA DONNA
The European Breast Cancer Coalition is an independent non-profit organisation whose members are affiliated groups from countries throughout Europe.
The Coalition works to raise awareness of breast cancer and to mobilise the support of European women in pressing for improved breast cancer education, appropriate screening, optimal treatment and increased funding for research. EUROPA DONNA represents the interests of European women regarding breast cancer to local and national authorities as well as to institutions of the European Union.

Europa Donna – The European Breast Cancer Coalition (whose member is also our Alliance of Women with Breast Cancer, o.p.s.) sent between 18th and 21st May 2015 their representatives to the European Parliament in order to encourage members of parliament in adopting the written declaration “On the Fight Against Breast Cancer in the EU” (0017/2015).
Strasbourg – representatives of EUROPA DONNA informed the MEPs directly on the matter of why is important to sign the written declaration “On the Fight Against Breast Cancer in the EU” until the very latest 27th July 2015.
On 22 July, the European Parliament adopted the written declaration which calls for the implementation of measures across Europe to fight this disease, which is the leading cause of death in European women aged 35 to 59. A majority of MEPs signed the declaration, which was co-authored by 10 MEPs and backed by EUROPA DONNA – The European Breast Cancer Coalition.
“The adoption of this written declaration is a significant step forward at a European level and must now be taken to a national level. The European Parliament has already recognised the need for high quality breast care through its Resolutions on Breast Cancer of 2003 and 2006 and through the European Commission-published European Guidelines for Quality Assurance in Breast Cancer Screening and Diagnosis. This declaration serves to remind MEPs and inform new MEPs that these still need to be implemented equally in all countries across the EU,” said Roswitha Britz (Spain), President of EUROPA DONNA.
Every year 361,608 women in the European Union are diagnosed with breast cancer and 91,585 women die of the disease.  1 in 8 women in the EU-28 will develop breast cancer before the age of 85. Early diagnosis through population based mammography screening programmes together with care and treatment in specialist breast units improves both mortality and quality of life.  The Declaration therefore calls for the following:
Member States to implement nationwide breast screening, in accordance with EU guidelines
Member States to provide multidisciplinary specialist breast units in accordance with EU guidelines by the 2016 deadline
Member States to ensure that people with metastatic breast cancer have access to, and are treated in, an SBU and that their ongoing needs for care and psychosocial services are co-ordinated and supported by the SBU, as per EU guidelines
The European Commission Initiative on Breast Cancer (ECIBC) project to deliver an accreditation protocol for breast cancer services by 2016; this protocol must ensure that mammography screening programmes and SBUs meet the requirements of the current EU guidelines and of the updated version of the EU guidelines, to be undertaken by the ECIBC in 2015

EUROPA DONNA – THE EUROPEAN BREAST CANCER COALITION organized the 12th Pan-European Conference on 17th – 18th October 2015. More than 230 representatives of 38 countries attended this event.
The conference, including the lectures and seminars, focused on contemporary topics, such as national plans to fight breast cancer disease, the newest trends in research and treatment, and issues of survival and returning to normal life again. The participants were reassured by the fact that activities of the European Commission within ECIBC (European Commission Initiative on Breast Cancer) are still successfully being continued. Furthermore, the European Commission representative Michael Hübel presented in his crucial speech official guidelines of the EC whose aim is to promote equal access of all European women to high-quality services related to breast cancer disease and its treatment.
These activities tend to be implemented in the newly updated release of the General Standards and in the list of general criteria for quality and security of services valid all across Europe. He emphasized the fact that for over 30 years the European Commission has been dedicated to unequal conditions related to breast cancer treatment and to right of all EU member-states for the same quality and access to all services provided. This issue is generally considered to be in the centre of the European strategy against the breast cancer.
Susan Knox, the Executive Director of EUROPA DONNA Coalition said:
“Our coalition supports the revision of the EU General Standards and the European Accreditation Protocol for Breast Cancer services. We are pleased the European Commission Initiative on Breast Cancer was established, which makes a continuing progress. This project helps us to achieve our main objective – equal access of all European women to high-quality breast cancer services.”
Professor Agnes Buzyn, President of the French National Cancer Institute, introduced her presentation called National plans against cancer: What representatives of breast cancer patients need to know. She outlined the 10 years history of these plans in France. And for the first time in history of Pan-European Conferences there were four experts that gathered at the roundtable and talked about the Contemporary trends in research of breast cancer disease and its treatment. Doctor Véronique Diéras, the French oncologist and director of clinical research at the Department of Oncology, Curie Institute, presented her topic called Research and personalized medicine. Professor Riccardo A. Audisio from the University of Liverpool, President of ESSO and BASO, editor-in-chief of EJSO, oncological surgeon and advisor at the St. Helens Hospital came up with the topic of Contemporary best practices of diagnosing and surgery of breast cancer. Doctor Joseph Gligorov MD, PhD, Department of Oncology, APHP Tenon, director of Coordination Centre HUEP and member of French Specialist Centre on the Breast Cancer INSERM U938 showed newest trends in Treatment of metastatic breast cancer. And Doctor Odile Cohen-Haguenauer, Service d'oncologie médicale & Centre des Maladies du Sein, Hôpital Saint-Louis, coordinator of APHP-INCa Network concluded the whole session by her presentation on Genetic mutations.
Due to an increasing number of women with breast cancer, as well as women after breast cancer treatment Amanda Shewbridge, a nurse-specialist and advisor in the field of breast tumours at Guys and St. Thomas´s NHS Foundation Trust UK talked about Plans of women after treatment: new approach to women with remission. Doctor Caroline Hoffman, director of Clinics and Research, The Haven, UK endorsed the so-called Mind-Body approaches for life support with breast cancer and after its treatment and emphasized the work of the The Haven in the United Kingdom.
All participants of the conference shared their experience and strategies in five workshops focused on: life after treatment, issues of young patients and metastatic patients, usage of social media for promoting projects of affiliated patient organizations. One of the workshops was dedicated to the recent achievement of Europa Donna Coalition – written declaration on the equal access of all European women to high-quality services related to breast cancer treatment.
At the end of the conference the participants listened to the overview of EUROPA DONNA successful activities within the Breast Health Day 2015 campaign and side-activities of this campaign that took place in the Czech Republic and Slovenia. Finally, representatives of Europa Donna national forums from Italy, Norway and Spain presented their activities, as well.
Roswitha Britz, President of EUROPA DONNA Coalition, concluded:
“The Pan-European Conference of the EUROPA DONNA Coalition is unique in its kind because it is the only one that deals primarily with breast cancer women and women after breast cancer treatment.”
Workshop for women with remission/ participating Marta Kostrová, representative of the Czech Republic
output: patient organizations should be fully committed to helping women-patients after treatment and helping them in returning to normal life again, such as assistance in overcoming their anxiety and lack of confidence, assistance in finding jobs, perhaps in returning to previous jobs (also part-time job) and assistance in returning to their full-fledged life in the society.
Workshop for metastatic patients/ participating Andrea Mičke, Bellis Young&Cancer/:
output: experience – depression, isolation, lack of interest by doctors, lack of information, side effects like appearance etc. Desirable needs: information, support by family and friends, communication with doctors, special and long-term care, financial assistance etc.
Workshop – using social media for advertising projects/ participating Eva Knapp, delegate of the Czech Republic/:
Output: using social media is becoming an integral part of advertising and promoting activities of particular actors, especially within the young generation. It enables to address much more people compared to traditional forms of advertisement, it provides a great variability of advertisement (leaflets, text, photos, videos,...) and it conveys current events. However, using social media must be carefully contemplated and verified.

On 24th of September 2016 was organized conference for leaders and representative of patients Member States Europa Donna in Milan, by the European Coalition Europa Donna BCALC. The main topic of konference was"Building the future of our organization"

Alliance of women with breast cancer which is already a member of ED for many years was represented by director Eva Knapp.  As a delegate of the Czech Republic, Marta Kostrová from the club ONKO Amazon Ostrava. As a representative  of czech and metastatistic patients, Zuzana Nemčíková of club ŽAP Prague.

The program was rich. The morning was common to all the participants at the conference. We got information about initiatives ECIBC (European initiative against breast cancer). We learned about her role, status, engagement, research and projects to support the implementation of best care for all patients with breast cancer in Europe. We got information about meaning of European resolutions and declarations for us – patients. It was about the importance of national patient organizations in promoting changes in the development of breast cancer treatment. We learned about the  latest steps in research and treatment.

Workshops afternoon

Workshop I:  Patients return to work after treatment

We could exchange experiences, opinions and visions from different countries of europe. The main question was: How can we help ourselves return back to "normal life".

Workshop II: Metastatic patients

At this workshop, we were asked for a presentation of the project of the Alliance of women with breast cancer - Invisible women. This project try to help women with metastatic breast cancer. The project tries to give speciality information, useful advice and mutual support. The aim of project is improve quality of life with disease.

Workshop III: ECIBC initiatives and projects to support and implement of the Breast Unit in Europe

(in the Czech Republic exists Comprehensive Cancer Centre which provide the best comprehensive care for all patients with breast cancer under common rules) and the current situation in individual countries.

The conference brought a lot of useful information, experiences and ideas through international cooperation.

Marta Kostrová

National team member of the Czech Republic

Europa Donna

Tuesday, 25 April 2017 11:42

EUROPA DONNA - konference

Po mnoho let EUROPA DONNA prosazovala ustanovení specializovaných oddělení zabývajících se rakovinou prsu ve všech evropských institucí. ED sepsala MBC (pokročilý karcinom prsu) průvodce o právech amerických žen nastiňující hlavní směry pro práci a služby, které byly přeloženy do několika jazyků. Ve spolupráci s poslanci EP  vyhotovili písemné prohlášení „o boji proti rakovině prsu v Evropské unii“ z roku 2015 zahrnující zejména práva žen s MBC. Od tohoto prohlášení je při zasedání parlamentu toto téma průběžně aktualizováno v oblasti pokroku. Evropská komise pro iniciativu rakoviny prsu (ECIBC) bude zahrnovat všechny aspekty rakoviny prsu včetně MBC. V červnu od 9. do 11.2017, ED uspořádá 1st EUROPA DONNA MBC Advocacy Conference, která se bude zaměřovat na otázky problémů a pomoci MBC.

 Zveřejněno v Europa Donna

V průzkumech, které provedla EUROPA DONNA, se zjistilo, že: 

  • MBC není srozumitelná široké veřejnosti
  • Ženy s MBC se často cítí izolované, neviditelné a stigmatizované
  • Ženy s MBC nemají přístup k nejlepší a nejnovější léčbě

The Breast International Group (BIG) je nezisková organizace, která se zabývá výzkumem rakoviny prsu napříč celým světem. Její sídlo se nachází v Bruselu v Belgii. BIG usnadňuje výzkum rakoviny prsu na mezinárodní úrovni tím, že stimuluje spolupráci mezi jejími členy a dalšími akademickými sítěmi a nezávisle spolupracuje s farmaceutickým průmyslem. Spolupráce ve velkém měřítku je zásadní pro dosažení významného pokroku v oblasti výzkumu rakoviny prsu, který vede ke snížení plýtvající duplicity úsilí a pro optimální obsluhu těch, kteří jsou postiženi onemocněním.

Neviditelné ženy

Projekt probíhá pod záštitou Aliance žen s rakovinou prsu, o.p.s. Vznikl z potřeby „zviditelnit“ ženy-pacientky s metastatickým/pokročilým zhoubným nádorem prsu, zvýšit povědomí celé naší společnosti o jejich existenci, připomenout jejich problémy a potřeby a pomoci zkvalitnit jejich život.

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