ED CZECH REPUBLIC runs Invisible Women, a support project for women who have MBC which focuses on providing scientifically proven information about the illness, as well as information on treatment, getting a second opinion, clinical trials, research and social welfare along with psychosocial and material help for women with MBC. ED Czech Republic also endeavours to make women with MBC and their problems more visible to people in their country through educating the public about the disease.
Examples of ED Czech Republic’s MBC information programme initiatives are printing and distributing a leaflet that lists programmes that help and support women with MBC, it offers information regarding MBC on its website and on its Facebook page, and ED Czech Republic members exchange information on MBC at the international level at various conferences such as ESMO, EBCC, and ED’s Advocacy Leader Conferences and ED’s Pan-European Conferences.
Primary activities carried out include: Educational seminars for MBC communicators, each specialized in certain aspects of the illness (medical care, social care, psychological care, nutrition); afternoon meetings with a psychologist include patients and their close friends or relatives; weekend meetings for MBC patients and their friends with lectures, discussions, and individual consultations with oncology professionals, leisure time activities, and networking; participation of women with MBC in international conferences organized by ED.
Professional help is provided on ED Czech Republic’s website and Facebook, and the translation of brochures concerning issues of MBC including the ED MBC Annex to the Short Guide to the European Guidelines for Quality Assurance in Breast Cancer Screening and Diagnosis.
Help is provided by local communicators who run a 24-hour helpline operated by the MBC Project psychologist. The Alliance also includes women with MBC in lobbying the Ministry of Health, for example in its advocacy for specialized onco-psychologists. Furthermore, the Alliance is cooperating with another NGO, Amelie, o.s., to organise a self-help scheme with ten psychological education workshops for MBC patients in different Czech towns.
In 2011, ED France published the first Metastatic Breast Cancer brochure in Europe. Written by oncologists, biologists and psychotherapists along with an active participation of breast cancer patients and MBC patients, this brochure has been widely distributed and noted by the medical community. It has since been translated into English and Maltese by ED Malta and into Hebrew by ED Israel.
In 2013, ED France worked with industry partners to develop a series of brochures, radio shows and MBC cafes. Patients have since then been given a safe space to talk about their metastatic condition during “Café Donna”. Over 8,000 brochures were distributed throughout the country to patients, gynecologists, medical centers, caregivers and all health professionals involved in MBC; hundreds have been downloaded over the Internet, through the ED France website and social networks.
In 2015, ED France created a dedicated taskforce for the topic of MBC. Since then, a EUROPA DONNA France advocate presented at the World Cancer Congress of 2016 and at other oncology events. Moreover, ED France is working to design and create support and care tools for patients.
In July 2016, ED Georgia held a press conference at the Blue Radisson Iveria Hotel to ask the government of Georgia to support MBC patients as part of its “Target for Life” awareness campaign as a first step toward creating an advocacy programme for women with MBC.
ED Israel / the Israel Cancer Association (the ICA) holds support groups and workshops tailored to the needs of Metastatic Breast Cancer patients. These constitute a source of emotional support, while creating the conditions for reciprocal empathy, to reinforce solidarity and a sense of belonging, alleviate loneliness during the disease trajectory, bolster self-confidence, share and impart tools to cope with crisis and provide up-to-date information for patients. The groups are led by psycho-oncology professionals and are held at the ICA "Strong Together" Support Centers in Haifa, Afula, Jerusalem, Tel Aviv, and Beer Sheva, and at ICA branches throughout Israel. Based on the experience ED Israel has accumulated in Hebrew speaking groups, it expanded and initiated this important activity for Metastatic Breast Cancer patients in Arabic and Russian languages.
In addition, ED Israel holds a special yearly seminar geared towards patients coping with Metastatic Breast Cancer. They incorporate stories of how Metastatic Breast Cancer patients are coping with the disease, in the media channels, on TV, in newspapers, as well as a special radio announcement, featuring a volunteer who has with Metastatic Breast Cancer. They have also translated into Hebrew a booklet on Metastatic Breast Cancer which was produced by Europa Donna France.
EUROPA DONNA ITALY FOR MBC PATIENTS
1. THE SURVEY "Metastatic breast cancer: Life, needs, illness"
ED Italy conducted the survey “Metastatic breast cancer: life, needs, illness”, which was presented at the European Breast Cancer Conference-9 (EBCC-9 Glasgow, 19-21 March 2014) in a poster format.
The investigative tools were an Online Blog for a community of 15 MBC patients (duration 2 weeks) and a structured questionnaire, completed by 69 MBC patients. Those interviewed had an average age of 54 years and almost 30% were under 45 years; they had commitments in terms of relationships, family and loved ones; most were married, half had a child under 18 years and nearly half had a job. Issues investigated were: experience of the disease and its impact on daily life, impact of treatment on daily life, choice of treatment centre, relationship with physician, support and assistance needs and bone metastases.
Living with MBC: MBC was perceived as a life and death struggle; it created worry and anxiety, totally disrupting women’s lives; it disrupted activities of daily living, work, affective and sexual life; the disruption was felt most acutely by young women.
Treatment: Ambivalence about treatment: on the one hand it was an ally, on the other a poison. The side effects were considered “really awful”; women knew they needed the treatments, but deep down they wanted stop them. Women felt a strong need for help to combat the side-effects with free medicines and access to specialists. Specific treatments for bone metastases are required to slow the illness progression.
Needs: More support and sympathy from the doctor; more information about the disease and its treatment; less red tape, with rapid access to examinations and their results; involvement in decisions about treatment; strong fear that the right to healthcare and treatment could be revoked.
2. THE BLOG – “Fight, live, keep smiling”
Advanced cancer is still a taboo in Italy, and little is said about it in the media. In order to overcome this situation, five women with Metastatic Breast Cancer created the first Italian blog about MBC, published by one of the most popular women's web magazines in the country, “La Repubblica”. The blog appears to be a very important tool for women with MBC allowing them to get in touch with each other, to share experiences, to discuss their difficulties and, to facilitate the relationship with their doctors. Since the launch of the project in January 2014, the blog has collected about 1,000comments and 16,000 page views per month.
The 5 main needs described in the blog were for: more information about metastatic breast cancer; more support by doctors; more time and space during meetings with doctors; more information about clinical trials; more information about the rights of metastatic patients.
Conclusions: The blog has highlighted some important needs of Italian women with metastatic breast cancer: being given consideration, getting and giving information, sharing experiences. The blog is not “just” a self-help community, but it is a powerful tool of communication, and a new advocacy movement is arising thanks to it.
3. THE INTERACTIVE LIBRARY
An interactive library, hosted on the ED Italy website, aims to allow immediate and easy use of contents developed with the contribution of the ED Italy scientific committee. The series consists of interactive "headings" that are continuously updated and completed in order to include all those texts dealing with topics of interest. The library includes information tools targeted to three different types of women: women who do not have breast cancer, women with breast cancer and women living with Metastatic Breast Cancer. For each type the following topics of interest are developed: Prevention and early detection; Multidisciplinary breast cancer centers (Breast Unit); Metastatic Breast Cancer--characteristics and types, treatments, impact on quality of life, etc.
Information is transmitted via newly developed tools, movies and animations, accessible on the Internet, with the possibility of discussion and interactions with experts, associations and patients.
The metastatic breast cancer chapter
The chapter consists of four sections: scientific section, the patients' perspective, patients’ rights, and the repository.
An ED Malta group dedicated specifically to women with MBC has been running for several years. Activities have included:
In February 2014 they held an MBC seminar, which covered the latest guidelines, pathology, medical imaging, medical management and treatment, nursing the MBC patient, living with MBC (patient's perspective), ethical issues, physiotherapy, psychological care, sociological implications and palliative care. More than 100 health professionals attended the seminar. ED Malta is planning to hold another seminar on MBC in March 2017.
ED Malta has translated an ED France booklet on the topic of MBC from French into both English and Maltese. The group has also been working on a leaflet for women with MBC, with information on services and benefits available in Malta.
Each year ED Netherlands organises a conference for MBC patients, which covers new treatments and developments; and participants are given the opportunity to share their experiences. In several regions, regular meetings are held at ‘cancer houses’, places where patients share their feelings in a small group and can discuss the topics they are dealing with.
ED Netherlands also has an expert group of eight patients who develop materials and ideal pathways for care in hospitals. They are in regular contact with specialised doctors and nurses who share best practice.
This forum has telephone helplines to provide information and (digital) contact and it uses a tool to help patients make treatment decisions and prepare questions to ask the doctor. They also have a breast cancer monitor with information about hospital care. And ED Netherlands has a questionnaire tool to help them learn about the healthcare experiences of people with MBC to let the doctors and nurses know how patients feel and what is important to them. Furthermore, theyattend conferences to keep abreast of new information on the disease, and they include MBC information on their website.
Finally, ED Netherlands lobbies for equal treatment for MBC patients with the government.
During 2016 ED Sweden engaged in the following MBC projects:
ED Sweden sponsored three separate weeks with 12 women with MBC each week to attend rehabilitation retreats at a beautiful spot with a professional to take charge of their care and organize the week. They also sponsored rehabilitation weekendsfor women with MBC in the vicinity of Stockholm and organised three weekends for eight young women to attend each weekend.
ED Sweden launched a report on MBC in March 2016 on conditions and describing how the healthcare system was not giving the same access to treatment and care to all women, depending on where they live: this generated some media interest. They also published articles regarding the problem of the lack of registration of MBC patients, which also reflects negatively on treatment and research.
ED Sweden gave seminars on the situation for women with MBC and invited decision-makers, professionals and the media to attend.
Furthermore, ED Sweden has begun working on a site for decision-makers that will launch in 2017. The aim is to raise awareness and make it easier to go further with public policy decisions that will benefit women living with MBC.
MBC activities in Switzerland
ED Switzerland is planning an information campaign aimed at the public about Metastatic Breast Cancer. It then will create MBC support groups.
Also in 2017, they will adapt the guide, “Mein persönlicher Begleiter bei metastasiertem Brustkrebs” for Switzerland (translation in French and Italian).