PHA-Exchange> The Patients' Charter of the Tuberculosis Community : First Draft for Comments

[Claudio]

From: loud.n.clear 

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 / authorities 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 infected or affected, and of those who work to confront this disease 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


DRAFT 1 : 10.10.05 Comments welcome, send to: blair at 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 infected 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. Empowered 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 coinfections.


2. Right to Dignity

a. The right to be treated with respect and dignity, free of stigma, prejudice or discrimination by health providers and authorities.

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 indirect, 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 treatment proposed including common risks and appropriate alternatives.

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 treatments.

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 previous 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 condition 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 community based associations through the health providers, authorities, 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 treatment 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 difficulties 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.

------------
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 at 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 www.tbtv.org or upon request to: voices at tbtv.org
To unsubscribe, please send a blank e-mail with 'delete me' in the subject line.



TBTV.ORG 
'Our Voices, Loud and Clear!' 
info at tbtv.org http://www.tbtv.org
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
-------------- next part --------------
An HTML attachment was scrubbed...
URL: <http://phm.phmovement.org/pipermail/phm-exchange-phmovement.org/attachments/20051010/fe1d84a0/attachment-0001.html>