Background to the programme
Since January 2003, health professionals from different sectors as well as representatives from associations for users and volunteers have shared assessments of the field, the needs of patients, their families and caregivers in order to work together on a common goal: the development of palliative care and support in the Roanne area. Together they have created the Roanne Association IT'S STILL LIFE in 2004.
Objectives of the programme
• Develop support and palliative care in the health sector, in the home or in institutions, to promote the coordination of care.
• Contribute to the development of support for the sick, families and relatives,
• Organise training and support for professionals in the medical, health and social sectors
• Spread the values of palliative care and support through actions that raise awareness and information among the general public.
• Multidisciplinary group for reflection and exchange on support which is open to all
• Organisation of information awareness evenings in Roanne, inter-professional days
• Organisation of a support group for bereaved
• Solidarity Fund for poor, sick people
• Participation in Roanne Health Network (Board of Directors, the Ethics Committee)
• Contribution to different events to spread the values of palliative care
Quantitative and qualitative results from the implemented actions
For 10 years, it has provided a space for information, exchange and rejuvenation as much as for professionals as volunteers.
IT'S STILL LIFE has contributed to the creation of a Health Network to promote care in the home, to the dissemination of best practices in palliative care, to raise public awareness and to contribute to the training of hundreds of caregivers and the engagement of new support volunteers in relation to our partners.
IT'S STILL LIFE has from the outset been based on collective thinking, partnership and cooperation between all health actors in the Roanne territory around the promotion of support for the most vulnerable people (seriously ill or disabled) in line with the French Society for support and palliative care (SFAP) and as part of the Léonetti and Neuwirth legal framework relating to end of life.
Partnership(s) developed in the context of the programme
The association does not intervene directly in hospitals, medical-social institutions or personal assistance services but it contributes to information initiatives that it can lead.
It is a member of the Roanne Health Network and works closely with other associations: Until death, support life (JALMALV) The league against cancer, and other user associations ...
Financial partners: CPAM de la Loire, France Foundation, town halls ...
Difficulties and/or obstacles encountered during the programme’s implementation :
The main difficulty is in renewing the commitment from volunteers in the project and the implementation of the association's actions. The budget, which is essentially maintained by contributions and donations, is sometimes difficult to balance. It is sometimes difficult to effectively publicise information about the association in the local media.
Solutions used to overcome the difficulties and/or obstacles :
To direct training to raise awareness we have set up a joint working group with the volunteer association JALMALV in order to have a greater wealth of exchanges and to continually renew the volunteers.
The involvement of volunteers in other associations facilitates the flow of information.
Suggestions for future improvement :
• Have new, active and involved members.
• Progress further in its work with professionals, volunteers and the public to promote palliative care and support.
• Contribute to the development of the Roanne Health Network to improve the quality and coordination of care and facilitate the return to home and care within the home for the seriously ill or disabled.
Summary of factors responsible for the programme’s success :
Main factor for success: Do not be isolated even when the amount of work can lead to withdrawing and rely on habits ... Search for contacts and partnerships, give to receive, help other associations, partners ... set a goal that gives sense to the association and re-evaluate it for a vibrant associative project.
Ideas for basic or applied research topics, that could be useful to the programme :
Excerpt from the introduction to the program of the 20th Congress of the SFAP in Montpellier on June 18-20 June 2014: "Palliative care was born from radical criticism from civil society with regards to the fate of the seriously ill and the dying in medical institutions. They are today at a crossroads between a creative, activist practice and beneficial integration with the operation of these institutions (...)
"In a difficult socio-economic context, with increasing precariousness, how can we survive, help and convey our ideas? Beyond regulatory and legal processes, how can we continue our ethical development?"
"Death is not aware of the crisis. It remains a universal and eternal questioning, that we fear, repress or desire. What is our place in this question today and tomorrow in our practices?
"These paradoxes, contradictions and conflicts are therefore at the heart of our current practices and our movement. They are rich with a critical and invigorating power which enables us to think differently about the role of knowledge and techniques. "
To know more
See the websites:
National Observatory on End of Life (ONFV) http://www.onfv.org/
- Report 2013-2014
- Presentation brochure YET LIFE
- Group Brochure bereaved.
(See annexes and: http://www.pourtantlavie.je