Tag Archives: family

The International COPD Bill of Rights

COPDers, Bloggers, Friends and Family

Read and take heart ..because, so far as I know, we here in Kitsap County do not have physicians nor a health department giving Spirometry testing for early detection COPD..but we can change that state of affairs by asking for it.

Why not?
Following is a simple Bill of Rights for COPDers on an international scale, meant to affect us wherever we live, in any country, city, county, urban or farm.
Help those who follow us…fill it out as best you can and send it in.

Patients, family and caregivers…

The Bill of Rights: Translation and Dissemination

1. Have you or your organization translated the COPD Patients’ Global Bill of Rights into your local language?

2. If you have translated the Bill of Rights, has it been posted on the ICC Website?

If no, please send a copy to ICC Executive Director Larry Grouse at lgrouse1@msn.com.

3. If you have translated the Bill of Rights, has it been posted on local Websites in your country/area?

If yes, please list the Websites where it appears.

4. Have you or your organization taken any other actions to promote or disseminate the COPD Patients’ Global Bill of Rights?

If yes, please describe.

5. Do you or your organization have any upcoming activities planned to disseminate the COPD Patients’ Global Bill of Rights?

If yes, please describe.

I. The right to receive early and accurate diagnosis
Early and accurate diagnosis is essential for COPD patients to take the necessary steps to improve their quality of life and lung health. Physicians and national health services have a responsibility to provide this early and accurate diagnosis. National health services should have reliable information about the number of COPD patients in their country. Physicians should be willing and able to diagnose COPD.

6. In your country/area, is spirometry readily available in
*private pulmonary specialist clinics?
*public pulmonary specialist clinics?
*private internal medicine clinics?
*public internal medicine clinics?
*primary care centers?
*occupational diseases clinics, e.g., clinics in factories?

7. If spirometry is not readily available, are peak flow meters readily available in the above situations? Please specify.

8. Are continuing medical education (CME) training courses in spirometry available?

9. Are national/local guidelines for diagnosis of COPD in place?

If yes, on what are they based (GOLD, PAL, PEN-WHO, etc.)?

10. How is COPD defined in curricula for training doctors, nurses, and other health care professionals?

11. Do reliable statistics exist about the prevalence of COPD in your country/area?

If yes, please describe and provide the source for the statistic.

12. What are the obstacles to early and accurate diagnosis of COPD in your area?

13. Have activities to disseminate the COPD Patients’ Global Bill of Rights improved patients’ access to early and accurate diagnosis?

If yes, please describe.

14. What is the next step in your area to improve patients’ access to early and accurate diagnosis?

II. The right for information and education about COPD
People in each country should know what COPD is, its risk factors, especially smoking, and what symptoms it causes. COPD patients should be taught what state-of-the-art care for COPD involves.

15. Is any information available about public awareness of COPD in your country/area? Public understanding of the definition of COPD? Public awareness of COPD risk factors and the role of smoking in causing COPD?

If yes, please describe and give the source of the statistics.

16. What is COPD called by the general public in your local language?

17. Have any public awareness campaigns about COPD been conducted in your area/country recently?

If yes, please describe.

18. How is COPD patient education conducted in your country? E.g., is it part of doctor visits? Are nurses involved? Are there clubs or schools for COPD patients?

19. Is reliable, medically accurate patient education material available in print and/or online in your country?

If yes, please describe.

20. What are the obstacles to COPD patient education in your area?

21. Have activities to disseminate the COPD Patients’ Global Bill of Rights improved patients’ access to information and education?

If yes, please describe.

22. What is the next step in your area to improve patients’ access to information and education about COPD?

III. The right for support and understanding
Friends, family, communities, health care providers, and health services need to provide support and understanding to COPD patients for this difficult disease.

23. Do COPD patients have access to patients’ clubs, support groups, and counseling regardless of income level?

24. Are services available to help COPD patients with their daily activities?

25. What support and protections are available to persons in your country/area who are caring for a family member with COPD?

26. Have there been any important pieces of legislation passed at the local/national level that provide support to COPD patients?

If yes, please describe

27. What are the obstacles to support and understanding for COPD patients in your area?

28. Have activities to disseminate the COPD Patients’ Global Bill of Rights improved support and understanding for patients?

If yes, please describe.

29. What is the next step in your area to improve support and understanding for COPD patients?

IV. The right to receive care and treatment that will benefit them
Proper care and treatment will benefit patients, improve their breathing and quality of life, and will help them contribute more to others. Effective medicines, smoking cessation counseling and treatment, and good health care are essential to provide this right, as is long-term follow up.

30. What medications for COPD are available in your country?

Are these medications widely covered by health insurance?

31. What other treatments for COPD (e.g., pulmonary rehabilitation programs, oxygen therapy, surgery) are available in your country?

Are these widely covered by health insurance?

32. Are smoking cessation clinics available in hospitals and/or primary care in your country?

If yes, are the clinics free or low-cost? Are the clinics part of a national program?

33. What other support for smoking cessation is available in your country?

34. Are hospital emergency departments equipped with medications and equipment to manage COPD exacerbations (oxygene, nebulizers, corticosteroids, antibiotics)?

If yes, are these available in rural as well as urban areas?

Are these resources available in sufficient number to meet patients’ needs?

35. In primary care dispensaries are medications and equipment for COPD treatment readily available (oxygen concentrators/cylinders, nebulisers, corticosteroids)?

36. Who cares for COPD patients in your country (GPs, nurse practitioners, specialists, etc.)?

37. How is care of a patient by GP and specialist coordinated in your health care system? What are the mechanisms for ensuring continuity of care?

38. What are the obstacles to better care and treatment for COPD patients in your area?

39. Have activities to disseminate the COPD Patients’ Global Bill of Rights improved care and treatment for COPD patients? Please describe.

40. What is the next step in your area to improve care and treatment for COPD patients?

V. The right to their fair share of society’s involvement and investment in their welfare and care
COPD patients have worked throughout their lives to earn their fair share of society’s involvement and investment in their welfare.

41. Are any statistics on quality of life of COPD patients available in your country?

If yes, please describe and provide the source.

42. What are the obstacles to ensuring that COPD patients in your area receive their fair share of society’s investment in their welfare and care?

43. Have activities to disseminate the COPD Patients’ Global Bill of Rights improved patients’ attainment of their fair share of society’s investment in their welfare and care?

If yes, please describe.

44. What is the next step in your area to ensure that COPD patients receive their fair share of society’s investment in their welfare and care?

VI. The right to advocate with other COPD patients and supporters for improved COPD care and COPD prevention
COPD patients know how important good care is to their lives. They also know that every effort should be made to prevent others from suffering from this disease. It is their right and responsibility to advocate at every level for improved COPD care and prevention.

45. Are there COPD patient organizations in your country?

If yes, please describe.

46. Are patient groups linked with or otherwise in collaboration with medical associations in your country?

If yes, please describe.

47. What are the obstacles to advocacy by COPD patients in your area?

48. Have activities to disseminate the COPD Patients’ Global Bill of Rights improved COPD patients’ ability to advocate for themselves?

If yes, please describe.

49. What is the next step in your area to improve COPD patients’ ability to advocate for themselves?

VII. The right to safe air and environment
Unsafe air and environment are particularly harmful to COPD patients. All health care professionals have an obligation to protect their patients from conditions that are unsafe to their health. Patients and health care providers have an obligation to fight for their rights to safe air and environment.

50. Is indoor smoking regulated in your country/area?

51. Is outdoor air pollution monitored in your country/area?

52. What regulations exist to ensure outdoor air quality/clean air in your area?

53. Are automobile emissions standards in place in your area?

54. Are open fires for indoor cooking or heating widely used in your country?

55. What are the obstacles to safe air and environment exist your area?

56. Have activities to disseminate the COPD Patients’ Global Bill of Rights led to improved air quality in your area?

If yes, please describe.

57. What is the next step in your area to improve air and environmental quality?

My answers to the above questions next time.

More later… Sharon O’Hara

COPD Patient International BILL OF RIGHTS

The First World Conference of COPD Patients held in Rome, June 2009 had more than 250 people from more than 40 countries in the world. Gathered together, the First World COPD Patient Bill came into being.

How does the health authority in our country, the United States of America, stack up against other countries in the COPD fight for patient rights?
How does our local authority stack up?
^^^^^^^^^^^^^^^
COPD PATIENTS’ GLOBAL BILL OF RIGHTS
“COPD is a disease that working people acquire as a part of their
life in society. Like arthritis where years of strain and lifting
on the joints wears them down, COPD is caused by years of
breathing toxic materials, especially tobacco and biomass fuel
smoke, and other pollution that damages the lungs.
People with COPD worldwide have earned their right to
medical care by their lives of work. These rights include
all those listed below.”

The COPD Patients’ Global Bill of Rights was adopted
by the First World Conference of COPD Patients,
……
1. The right to receive early and accurate diagnosis

Early and accurate diagnosis is essential for COPD patients to take
the necessary steps to improve their quality of life and lung health.
Physicians and national health services have a responsibility
to provide this early and accurate diagnosis. National health
services should have reliable information about the number of
COPD patients in their country. Physicians should be willing and
able to diagnose COPD.

2. The right for information and education about COPD

People in each country should know what COPD is, its risk
factors, especially smoking, and what symptoms it causes. COPD
patients should be taught what state-of-the-art care for COPD
involves.

3. The right for support and understanding

Friends, family, communities, health care providers, and health
services need to provide support and understanding to COPD
patients for this difficult disease.

4. The right to receive care and treatment that will benefit them

Proper care and treatment will benefit patients, improve their
breathing and quality of life, and will help them contribute more
to others. Effective medicines, smoking cessation counseling
and treatment, and good health care are essential to provide this
right, as is long-term follow up.

COPD PATIENTS’
5. The right to their fair share of society’s involvement and
investment in their welfare and care

COPD patients have worked throughout their lives to earn their
fair share of society’s involvement and investment in their welfare.

6. The right to advocate with other COPD patients and
supporters for improved COPD care and COPD prevention

COPD patients know how important good care is to their lives.
They also know that every effort should be made to prevent
others from suffering from this disease. It is their right and
responsibility to advocate at every level for improved COPD care
and prevention.

7. The right to safe air and environment

Unsafe air and environment are particularly harmful to COPD
patients. All health care professionals have an obligation to
protect their patients from conditions that are unsafe to their
health. Patients and health care providers have an obligation to
fight for their rights to safe air and environment.
GLOBAL BILL OF RIGHTS

The COPD Patients’ Global Bill of Rights was developed
by the International Copd Coalition (ICC)
www.internationalcopd.org
TM
INTERNATIONAL
Helping the World Breathe Free

More later… Sharon O’Hara

COPD is Scream Worthy according to a Kitsap Sun Blogger.

COPD and Other Stuff …
…came about for several reasons…because people do not seem to know much about COPD, this disease seems to attract friends in the form of other diseases for the COPDer and the Kitsap Sun is willing to allow this shared adventure.
COPD is not a death sentence but it sure is a wake-up call.
I have a theory that the more informed we become about our condition and the more active we are in our own care, the better off we are. Our doctors are trained in medicine and indispensable but the responsibility for our life is ours.
There are a million things I want to say but for this first post, I am using a copy of a letter in part, I sent to my daughter when she told me that good friends had serious Emphysema hit their family.
“I’m sorry, but if they get on the right track from the beginning,(friend)may not go on to develop other ‘Stuff’.’

For starters:

Has (friend’s husband) Pulmonologist described the healing his lungs will do – the improving – for the first six months to a year after he stops smoking?

My doctor drew a graph showing the approximate lung improvement over months until the lungs have dispelled the last of the sticky smoke residue and healed until they are as good as they are going to get. His lungs will then continue normal aging.

The wonder though is that he, with full knowledge of his damaged lungs, will not be further destroying his lungs by continuing to smoke…like kicking a sick horse and adding insult to injury.

Today the idea of actually inhaling the foul smoke into my laboring lungs is noxious.

Another aid to stop smoking is for (friend) to visualize his impaired lungs and imagine inhaling the smoke into a distressed airway and down through his sick lungs. Yick!

Also, tell him to keep fighting to be the best he can be. THAT fight includes EXERCISE for a quality life. Tell (friend) not to give up and accept a role as an invalid…NEVER! (Some of the most invalid people I know have not got a thing medically wrong with them)

Tell (friend) (state) has a good teaching hospital she might want to run (husband) through for a second opinion.
(His) Primary Doctor is the key…the hub of the health wheel.

(State) also has the BEST Pulmonary Rehab Center in the whole country – right there.

That is enough for starters.

Life is not over for (husband and new caregiver, his wife)…far from it.
They are on an adventure of their lives and do not kid yourself.
Any disease that affects one member of a family affects ALL members of that family.”

Together, here, I hope we can help each other and others share hard-earned information about COPD and Other Stuff.
My comments are mine as a patient and in no way reflect medical advice. For medical advice, talk to your doctor.
Together I hope we can communicate and narrow the distance between the physician, patient and caregiver.
As Yvonne says, “We are in this together.”
Sharon Blomlie O’Hara