5.1.4. Participation of patients in society
A person affected by a chronic disease is a member of
society just like anybody else. The information with which he/she can make the
right choices in this process is for giving him/her the opportunity to have
his/her role in society regardless of his/her disease, as this should not have
any discriminatory effect.
In order to interact effectively with the many social
counterparts including one’s doctor, employer, partner, travel agent, insurance
company or national health service, specific courses have been designed and
have proved to be extremely valuable. Here one shares his/her experiences with
others. The necessary information that is passed on during these courses is
linked to learning skills. Modern ICT gives the opportunity to realize the
information need for people with chronic diseases in several ways. The
interactive character of ICT gives many possibilities to broaden and strongly
intensify the level of information for the sick.
Some of the main sectors in which information provision is
as the patient needs information about the most suitable insurance,
reimbursements and provisions, which can help to manage the disease. The
patient also needs information about the best available offer for what concerns
his/hercare. As a patient, the affected person should know what good care is,
i.e. he/she must be informed about the standard of care. People affected by
chronic diseases should be informed about their rights and duties as patients.
family: information about how to deal with the fact that one is a partner
of a person suffering from a chronic disease is essential. The same goes for knowing
the consequences that the disease may have on sexuality and on how to deal with
a child suffering from a specific disease.
work: information about what kind of jobs are not suitable for people with
a chronic disease and information about how to deal with it while at work.
leisure time: information about how to deal with the disease when
practicing a sport as well as information about how to deal with the disease
while on vacation.
and possible transport limitation: information about obtaining and
renewing a drivers’ license and on any possible transport limitations should
also be readily available