The Patients' Charter of the Tuberculosis Community
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First Draft for Comments
Greetings,
We have been collecting input for the first draft (below) of the
Patients' Charter, encouraging people with TB, TB-HIV and MDR-TB
to "Write Your Rights!"
Now, we seek your comments for the next version, to further our
efforts to foster 'positively empowered partnerships' between
people living with the diseases and the health providers / au-
thorities in the affected communities.
As the Patients' Charter is intended to be the 'sister' document
for the forthcoming International Standards of Tuberculosis Care
(see below), we have tried to synthesize the needs of those in-
fected or affected, and of those who work to confront this dis-
ease that kills two million of us each year. In short, a clear
declaration of our rights and responsibilities, and a tool to
begin to build 'community' on the ground, around the world.
We would really appreciate your comments, and before 20 October
2005.
In solidarity,
Erika Blair and Case Gordon
mailto:voices@tbtv.org
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DRAFT 1:
10.10.2005 - Comments welcome, mailto:blair@tbtv.org
Patients' Charter of the Tuberculosis Community
The aim of the Patients' Charter of the Tuberculosis Community
is to explain both the Rights and Responsibilities of those in-
fected by TB, and to empower people with the disease and their
communities through this knowledge.
Knowing and understanding these rights and responsibilities will
make the relationship with health care providers a mutually
beneficial one. The Charter sets out the ways in which patients,
the community and the health providers work as partners in a
positive and open relationship with a view to improving TB care,
and enhancing the effectiveness of the health care process. Em-
powered patients, helping the fight to stop TB.
PATIENTS' RIGHTS
1. Right to Access to Care
a.The right to free and equitable access to tuberculosis care,
from diagnosis through treatment completion, regardless of race,
gender, age, language, resources, legal status or having another
illness.
b. The right to receive medical advice and treatment which fully
meets the new International Standards of Tuberculosis Care*,
centering on patient needs, including those with MDR-TB or TB-
HIV co-infections.
2. Right to Dignity
a. The right to be treated with respect and dignity, free of
stigma, prejudice or discrimination by health providers and au-
thorities.
b. The right to quality health care in a dignified environment.
c. The right to meet, share experiences and counsel with peers
and other patients.
3. Right to Information
a. The right to information about what health care services are
available for tuberculosis, and what engagements, direct or in-
direct, are involved.
b. The right to be given a clear, understandable description of
the medical condition, with diagnosis, prognosis (an opinion as
to the likely future course of the illness), and of the treat-
ment proposed including common risks and appropriate alterna-
tives.
c. The right to know the names of any medication or intervention
to be prescribed, and its normal actions and potential side-
effects, and its possible impact on other conditions or treat-
ments.
d. The right of access to medical information which relates to
the patient's condition and treatment, and a copy if requested.
4. Right to Choose
a. The right to accept or refuse any medication, investigation
or treatment, and to be informed of the likely consequences of
doing so.
b. The right to a second medical opinion, with access to previ-
ous medical records.
c. The right to choose whether or not to take part in medical
research programs.
5. Right to Privacy
a. The right to have privacy, dignity and religious and cultural
beliefs respected.
b. The right to have information relating to the medical condi-
tion kept confidential.
6. Right to Complaint
a. The right to make a complaint through channels provided for
this purpose by the health authority, and to have any complaint
dealt with promptly and fairly.
b. The right to appeal to a higher authority if the above is not
respected.
7. Right to Organize
a. The right to join, or to establish, TB patient organizations,
and to seek support for the development of these clubs and com-
munity based associations through the health providers, authori-
ties, and civil society.
b. The right to participate as 'stakeholder' in all programs of
tuberculosis prevention and control, and to have meaningful TB
patient representation in local and national health authorities.
PATIENTS' RESPONSIBILITIES
1. The responsibility to share information
a. The responsibility to provide the health carer with as much
information as possible about present health, past illnesses,
any allergies and any other relevant details.
b. The responsibility to provide information about contacts with
immediate family, friends and others who may be vulnerable to
tuberculosis.
2. The responsibility of treatment
a. The responsibility to follow the prescribed and agreed treat-
ment plan, and to conscientiously comply with the instructions
given to protect the patient's health, and that of others.
b. The responsibility to inform the health provider of any dif-
ficulties or problems with following treatment.
3. The responsibility to the community
a. The responsibility to defend the community by encouraging
others to seek medical advice if they exhibit the symptoms of
tuberculosis.
b. The responsibility of showing solidarity with other patients,
and to march together to treatment completion.
4. The responsibility to be empowered
a. The responsibility to show consideration for the rights of
other patients and health care providers, understanding that
this is the dignified basis of the TB community.
b. The responsibility to join in efforts to make the community
TB Free.
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Read the draft International Standards for Tuberculosis Care:
http://www.tbtv.org/pdf/ISTC_July_4_2005.pdf
Patients' Charter of the Tuberculosis Community / draft 1 /
10.10.05 Comments welcome: send to Erika Blair (blair@tbtv.org)
http://www.tbtv.org/texts/newsflash/patients_charter_draft1.html
This Draft will be available in French, and hopefully Spanish
and Russian in the next few days at http://www.tbtv.org or upon
request mailto:voices@tbtv.org
TBTV.ORG
'Our Voices, Loud and Clear!'
Patients Support Network for TB-HIV-MDR
Solidarity - Advocacy - Mobilization / Frontline + Online
Non Profit NGO / French reg.: 0343032864, siren 477635155
Reg. HQ: 34380 Viols - Laval, France Tel/Fax: +33-467-595-239
Studio 1: P.O. Box 32678, Lusaka, Zambia Tel/Fax: +260-1-221-824
Studio 2: P.O. Box 10087, Yaoundé, Cameroon Tel/Fax: +237-972-5108
mailto:info@tbtv.org
http://www.tbtv.org