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