Présentation du Guide par Fabrice Lehoux, rédacteur, lors de la soirée de clôture du projet, le 19 décembre 2006, au Toit Citoyen © AIDES
Intervention de Christian Saout, président de AIDES © AIDES
Intervention de Christian Saout, président de AIDES © AIDES
cocktail de clôture © AIDES The 2002-2007 Project
"Chronic Progressive Pathologies at Work"
Among the actions which have been set up within this project, based on reflections and surveys seeking to identify factors hindering or facilitating professional activity, awareness raising actions have been directed at people involved in the fields of professional integration and occupational health.
Several hundred professionals have been trained on the issue. Tools designed to help medical officers have been produced.
Finally, agreements are underway with some firms in the aim of organising awareness raising actions to help people living with a chronic progressive disease keep their job and raise awareness in the world of work.
Why?
The figures speak for themselves. More and more adults are living with chronic progressive pathologies. Many of them live on the fringes of the world of work, and not by choice.
There are simply too many obstacles preventing those who can and want to have a job that ties in with their state of health: lack of knowledge of organisations involved in work integration and of systems to help people stay in work, lack of appropriate support in helping people return to work, and a great deal of discrimination suffered in the work environment.
Today, the associations are trying to support people in their aspirations, such as the need to overcome their handicap, the desire to have a stable job and the wish to be independent and autonomous, hence the launch of this project, partly financed by the European Social Fund, the Ministry of Health and Solidarity and AGEFIPH (a fund management association integration of the disabled into the workplace).
Employment initiatives
These involve setting up initiatives between associations to support people affected by a chronic progressive pathology (CEP) and who want to set up a career plan.
They also involve raising awareness amongst employment integration and career advisory bodies, because, while sufferers have a low awareness of the integration organisations, the reverse is also, sadly, true. In practical terms, this means training professionals in supporting people affected by a chronic progressive pathology in their return to employment.
As far as keeping them in employment is concerned, the first initiative has been to raise awareness amongst company doctors via their peers, by improving their skills in keeping people suffering from a CEP in work. The other major project concerns keeping people in work and fighting discrimination. In practice, this means creating systems, such as the company agreement on the “CEP-trained disablement coordinator”, which provides a contact, guidance and support for employees finding it difficult to reconcile chronic disease and their job. It also involves informing employees, employers and employee representatives about these diseases and their impact on the personal and professional life of the people concerned. In short, informing and raising awareness throughout the work environment.
A guide has also been brought out – “Chronic diseases – Personal accounts and experiences – designed by and for the use of the people concerned”: people suffering from and involved in living with a chronic disease have used their own experiences to create a practical guide to joining and staying within the world of work. It examines the inner feelings of sufferers confronted with their new situation vis-à-vis work, does not take a condescending view of the realities and does not pull any punches concerning the difficulties encountered. Highly practical, it explains where to find support and who from, lists the key points suggested by people for setting up individual strategies for confronting employers, the Employment Office, career advisors, various organisations, etc. 50,000 copies will shortly be circulated free throughout France.
A partnership strategy
It did not take long to realise that the difficulties encountered by people living with HIV in the world of work were partly common to other chronic progressive pathologies such as cancer, hepatitis, multiple sclerosis, cystic fibrosis and kidney failure. The project was therefore taken on by a number of groups working in partnership to fight for equal opportunities in the workplace: “Vaincre la Mucoviscidose” (a cystic fibrosis association, “Cinergie” (a company doctors’ association), FNAIR (the national federation for kidney failure sufferers), the CFDT services federation, “Jeunes Solidarité Cancer” and “AIDES”, which originated and coordinates the project.
Partners
AIDES : An association fighting against HIV/Aids and hepatitis : http://www.aides.org
CINERGIE : a company doctors’ association supporting the employment of disabled people: http://www.handitrav.org/
“Fédération des Services de la CFDT”: a CFDT federation of employees working in commerce, hotels, tourism, catering, services, etc. : http://www.cfdt-services.fr/
FNAIR – the national federation for kidney failure sufferers: a federation of regional associations: http://www.fnair.asso.fr/
JSC – Jeunes solidarité cancer : Association de jeunes adultes touchés par le cancer : http://www.jeunes-solidarite-cancer.org
“Vaincre la Mucoviscidose”: a cystic fibrosis association providing accompaniment and support for sufferers and professionals: http://www.vaincrelamuco.org
For further information, please contact:
AIDES – Tour Essor – 14, rue Scandicci – 93508 Pantin cedex
01 41 83 46 46
pathologies-et-travail@aides.org
http://www.pathologies-et-travail.org
AIDES – Tour Essor – 14, rue Scandicci – 93508 Pantin cedex
01 41 83 46 46
pathologies-et-travail@aides.org
http://www.pathologies-et-travail.org
