Intimate health conditions affect a large portion of the European population. Among them, more than 700.000 live with a stoma. Despite the large number, they feel that they are invisible to society, mainly due to the lack of:

• awareness of issues, challenges and opportunities within intimate healthcare by key health decision makers
• equity in access to healthcare solutions among European Countries
• patient access to evidence-based innovations in intimate healthcare across Europe
• a platform for knowledge sharing among people/countries
• a European HTA opportunity

As stated in the Ostomate Bill of Rights, ostomate patients should:

• Receive appropriate pre-operative counselling
• Receive a well-constructed stoma placed at an appropriate site
• Receive expert and professional medical and nursing care for the stoma
• Receive support and information for the benefit of family and caregivers
• Receive complete and impartial information on all supplies and products available in their Country
• Have unlimited access to a variety of affordable ostomy products
• Receive information on national ostomy associations
• Be protected from all forms of discrimination
• Receive assurance that personal information about their ostomy surgery will be treated with discretion and confidentiality to maintain privacy

These represent new challenges for advocacy for people with intimate health conditions in Europe, which Cittadinanzattiva-Active Citizenship Network aims to contribute to overcome mainly by:

• Creating an informal platform for patient advocacy groups (PAGs) to strengthen their skills to increase patient voice nationally and regionally
• Providing greater awareness about people living with intimate health conditions through a European training session addressed to the patient advocacy groups’ leaders

The project will be carried out in the second half of 2023 and will involve Patient Advocacy Groups representing patients affected by intimate health conditions coming from EU countries, civic organizations, healthcare professionals and representatives of European institutions.

Through a European training seminar, a common set of updated information will be provided and experiences will be shared, building an informal network of specific patient associations which will be trained to become educators in their own communities to improve the uptake of messages aimed at individual and public health protection, to fight stigma, make invisible visible and reduce health inequalities across Europe.

To read more about the European training seminar for Patient Advocacy Groups held in Brussels on 17 November 2023, click here.

Potential next steps in 2024:

1. Social media communication campaign
   he first potential follow-up to the EU training session is a social media communication campaign focused on patients’ right to access to care, carried out on the channels of Active Citizenship Networks and other involved PAGs, providing key messages both in English and national languages with the involvement of experts, PAGs’ leaders and testimonials.

2. Policy recommendations
   The second potential follow-up activity concerns the drafting, in collaboration with an informal European working group composed by experts and PAGs involved in the first two activities, of Policy Recommendations focused on the value of access to care during and after the COVID-19 pandemic across Europe - with a specific focus on the needs of incontinent and ostomized persons.

3. Policy dialogue with the EU institutions
   Starting from the citizens’ and patients’ perspective, the opening of a dialogue with European institutions to identify their commitment regarding access to care across Europe, with a specific focus on the needs of incontinence and ostomy patients, through the organization of a public event at the European Parliament in Brussels, with the support of the MEPs interest Group “European Patients’ Rights & Cross-Border Healthcare”, to present the above-mentioned recommendations and the Charter of Ostomates Rights.

The initiative is realized in collaboration with

Thanks to the unconditional support of