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Patient Advocacy

Lymphedema is an incredibly complex medical condition in that not only do we as patients have to educate the medical community, but we, ourselves, must be our own advocates. Insurance coverage for lymphedema is minimal at best and patients often go through a nightmare maze appealing, getting referrals, authorizations and even medications.

We must learn to be more aggressively proactive on our behalf. Primary lymphedema patients absolutely must join hands with secondary lymphedema patients in a community wide effort to get treatment legislation passed.

All the lymphedema groups and organizations must learn to work together and support each others advocacy efforts.

For too long, the lymphedema world has been torn with dissent, disagreement and turf wars. This must cease and the focus must be on the patient and their well being.

After all, it is our lives that are at stake here, not organizations, groups or even individuals. This is truly a situation where the needs of the many outweigh the needs on the one.

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What is patient advocate?

The patient advocate may be an individual or an organization.

On an organizational basis, it is a group focused on providing information for, protection of, and advocate for patients rights and responsibilities. Generally, these are non-profit groups that may or maynot focus on a specific medical condition, disease or disability.  Activities may include awareness campaigns, healthcare  library literature, fund raising for either their own activities and/or support, research and treatment of the particular condition.  They also may represent patients before civic bodies, governmental agencies and legislative entities.

On a personal basis a patient advocate acts as a suppoprt individual and if legally contracted to do so may act as a liason between a patietn and their health care provider. It is their responsibility to follow any referrals for medical, financial, legal, administrative or other personnel to assure the patients is kept safe, well informed and never mislead or abandoned during the medical process/es. 

An advocate will assist in resolving problems/issues with not only insurances, but family, medical providers, home health professionals, home maintenance issues,  or any other company, supplier, provider of medical help to the individual.   

It is imperative that patients consider carefully whoomever they are thinking about in choosing their own advocate.  The individual may be involved with life and death decisions and their concern should always be what is in the patients' best interest. 

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The Patient's Bill of Rights

Below is a summary of a Bill of Rights that was adopted by the U.S. Advisory Commission on Consumer Protection and Quality in the Health Care Industry in 1998. This Bill of Rights now applies to the insurance plans offered to federal employees. Many other health plans and facilities have also adopted these values. Even Medicare and Medicaid stand by many of them.

Information Disclosure: You have the right to accurate and easily-understood information about your health plan, health care professionals, and health care facilities. If you speak another language, have a physical or mental disability, or just don’t understand something, help should be provided so you can make informed health care decisions.

Choice of Providers and Plans: You have the right to a choice of health care providers who can give you high-quality health care when you need it.

Access to Emergency Services: If you have severe pain, an injury, or sudden illness that makes you believe that your health is in serious danger, you have the right to be screened and stabilized using emergency services. These services should be provided whenever and wherever you need them, without the need to wait for authorization and without any financial penalty.

Participation in Treatment Decisions: You have the right to know your treatment options and to take part in decisions about your care. Parents, guardians, family members, or others that you select can represent you if you cannot make your own decisions.

Respect and Non-discrimination: You have a right to considerate, respectful care from your doctors, health plan representatives, and other health care providers that does not discriminate against you.

Confidentiality of Health Information: You have the right to talk privately with health care providers and to have your health care information protected. You also have the right to read and copy your own medical record. You have the right to ask that your doctor change your record if it is not accurate, relevant, or complete.

Complaints and Appeals: You have the right to a fair, fast, and objective review of any complaint you have against your health plan, doctors, hospitals or other health care personnel. This includes complaints about waiting times, operating hours, the actions of health care personnel, and the adequacy of health care facilities.

In addition to this bill of rights that is focused on hospitals and insurance plans, there are many other versions. There are special kinds, like the mental health bill of rights, hospice patient's bill of rights, and bills of rights for patients in certain states. Insurance plans sometimes have lists of rights for subscribers. Many of these documents tell you where to go or whom to talk with if you have a problem with your care. The American Hospital Association has a list of rights along with patient responsibilities that can help a person be a more active partner in his or her health care. (See "Additional Resources" below.)

If you have concerns about your insurance, it is sometimes helpful to start with customer service or your case manager at your health insurance company. For more information about dealing with insurance claims, see our document Medical Insurance and Financial Assistance for the Cancer Patient.

Additional Resources

More Information From Your American Cancer Society

The following related information may also be helpful to you. These materials may be ordered from our toll-free number, 1-800-ACS-2345.

Medical Insurance and Financial Assistance for the Cancer Patient (also available in Spanish)

Informed Consent (also available in Spanish)

Choosing a Doctor and a Hospital (also available in Spanish)

National Organizations and Web Sites

Other sources of patient information include:*

Advisory Commission on Consumer Protection and Quality in the Health Care Industry
Internet Address: 
http://www.hcqualitycommission.gov/

American Hospital Association
The Patient Care Partnership: Understanding Expectations, Rights and Responsibilities (brochure)
Internet Address: 
http://www.aha.org/advocacy-issues/communicatingpts/pt-care-partnership.shtml
Call 1-800-242-2626 for orders of 20 or more. Communicating with Patients  
http://www.aha.org/advocacy-issues/communicatingpts/index.shtml

Centers for Medicare & Medicaid Services (CMS) - HHS
Telephone: 1-800-633-4227; TTY: 877-486-2048
Internet address: 
http://www.cms.gov/

Medline Plus has information on Patient Rights
Internet Address: 
http://www.nlm.nih.gov/medlineplus/patientrights.html

*Inclusion on this list does not imply endorsement by the American Cancer Society

No matter who you are, we can help. Contact us anytime, day or night, for information and support. Call us at 1-800-ACS-2345 or visit www.cancer.org.

References

President's Advisory Commission on Consumer Protection and Quality in the Health Care Industry. Patients’ Rights and Responsibilities. Final report Available at: http://www.hcqualitycommission.gov/

U.S. Office of Personnel Management. Patients' Bill of Rights and the Federal Employees Health Benefits Program. Available at: http://www.opm.gov/insure/archive/html/billrights.html. Accessed November 29, 2007.

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What is a living will?

http://www.alllaw.com/articles/wills_and_trusts/article7.asp

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Medline Plus - Patient Rights

As a patient, you have certain rights. Some are guaranteed by federal law, such as the right to get a copy of your medical records, and the right to keep them private. Many states have additional laws protecting patients, and healthcare facilities often have a patient bill of rights.

An important patient right is informed consent. This means that if you need a treatment, your health care provider should give you the information you need to make a decision.

Many hospitals have patient advocates who can help you if you have problems. Many states have an ombudsman office for problems with long term care. Your state's department of health may also be able to help.

http://www.nlm.nih.gov/medlineplus/patientrights.html

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RN Patient Advocates

http://www.patientadvocates.com/

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Houston Patient Advocacy

http://www.houstonpatientadvocacy.com/

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National Patient Advocate Foundation

http://www.npaf.org/

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Professional Patient Advocate Institute

http://www.patientadvocatetraining.com/

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Guardian Nurses Healthcare Advocates

http://www.guardiannurses.com/

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Health Advocate

http://www.healthadvocate.com/

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Patient Advocate Foundation

http://www.patientadvocate.org/

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Patient Advocacy Resources

http://library.uchc.edu/departm/hnet/advocacy.html

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Patients are Powerful - A Patient Advocacy Organization

http://www.patientsarepowerful.org/

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National Patient Safety Foundation

http://www.npsf.org/

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Patient Advocacy - UK

http://omni.ac.uk/browse/mesh/detail/C0030674L0030674.html

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Australian Patient Safety Foundation

http://www.apsf.net.au/

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You & your doctor - British Medical Association

http://www.bma.org.uk/ap.nsf/Content/__HubYouYourDoc

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Medical Ethics - British Medical Association

http://www.bma.org.uk/ethics/index.jsp

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About NHS Complaints 

If you wish to make a complaint about an NHS organisation, contact them directly first. If you're not sure where to start or how to get in touch with an NHS body or independent regulator, try one of the following options.

http://www.nhs.uk/choiceintheNHS/Rightsandpledges/complaints/Pages/AboutNHScomplaints.aspx

Complaints procedures for the Department of Health

Details are provided here of the formal complaints procedures available to those who are not satisfied with the service provided by either the UK National Health Service or Local Authority Social Services. This document is published on the Web by the Department of Health

http://www.nhs.uk/choiceintheNHS/Rightsandpledges/complaints/Pages/NHScomplaints.aspx

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Health service ombudsman for England

The Health Service Ombudsman for England investigates complaints about the National Health Service (NHS). The ombudsman is independent of both the government and the NHS. This Web site provides information on how to make a complaint, how to complain locally, how to involve the ombudsman, who can complain, what type of complaints can and cannot be investigated by the ombudsman, the stages of the investigation, and how to complain about the decisions reached by the ombudsman. Official documents are available in full-text from this site (including an online ombudsman complaints form) and there is no charge for the services provided.

http://www.ombudsman.org.uk/

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What Services Do Patient Advocates Offer? 

Medical Assistance; Insurance Assistance;  Home Health Assistance; Elder and Geriatric Assistance;  Legal Assistance

See Full Article:

http://patients.about.com/od/caringforotherpatients/ss/becomeadvocate.htm

Attributes and Experience for patient advocacy:

http://patients.about.com/od/caringforotherpatients/ss/becomeadvocate.htm

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Patient Advocacy Resourcdes

http://library.uchc.edu/departm/hnet/advocacy.html

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This page has been updated and included in our new page, for additional information please see:

Lymphedema Advocacy

http://www.lymphedemapeople.com/wiki/doku.php?id=lymphedema_advocacy

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For information about Lymphedema

http://www.lymphedemapeople.com/wiki/doku.php?id=lymphedema\

For Information about Lymphedema Complications

http://www.lymphedemapeople.com/wiki/doku.php?id=complications_of_lymphedema

For Lymphedema Personal Stories

http://www.lymphedemapeople.com/phpBB2/viewforum.php?f=3

For information about How to Treat a Lymphedema Wound

http://www.lymphedemapeople.com/wiki/doku.php?id=how_to_treat_a_lymphedema_wound

For information about Lymphedema Treatment 

http://www.lymphedemapeople.com/wiki/doku.php?id=treatment

For information about Exercises for Lymphedema 

http://www.lymphedemapeople.com/wiki/doku.php?id=exercises_for_lymphedema

For information on Infections Associated with Lymphedema

http://www.lymphedemapeople.com/wiki/doku.php?id=infections_associated_with_lymphedema

For information on Lymphedema in Children

http://www.lymphedemapeople.com/wiki/doku.php?id=lymphedema_in_children

Lymphedema Glossary

http://www.lymphedemapeople.com/wiki/doku.php?id=glossary:listing

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Lymphedema People - Support Groups

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Children with Lymphedema

The time has come for families, parents, caregivers to have a support group of their own. Support group for parents, families and caregivers of chilren with lymphedema. Sharing information on coping, diagnosis, treatment and prognosis. Sponsored by Lymphedema People.

http://health.groups.yahoo.com/group/childrenwithlymphedema/

Subscribe: childrenwithlymphedema-subscribe@yahoogroups.com

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Lipedema Lipodema Lipoedema

No matter how you spell it, this is another very little understood and totally frustrating conditions out there. This will be a support group for those suffering with lipedema/lipodema. A place for information, sharing experiences, exploring treatment options and coping.

Come join, be a part of the family!

http://health.groups.yahoo.com/group/lipedema_lipodema_lipoedema/?yguid=209645515

Subscribe: lipedema_lipodema_lipoedema-subscribe@yahoogroups.com

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MEN WITH LYMPHEDEMA

If you are a man with lymphedema; a man with a loved one with lymphedema who you are trying to help and understand come join us and discover what it is to be the master instead of the sufferer of lymphedema.

http://health.groups.yahoo.com/group/menwithlymphedema/

Subscribe: menwithlymphedema-subscribe@yahoogroups.com

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All About Lymphangiectasia

Support group for parents, patients, children who suffer from all forms of lymphangiectasia. This condition is caused by dilation of the lymphatics. It can affect the intestinal tract, lungs and other critical body areas.

http://health.groups.yahoo.com/group/allaboutlymphangiectasia/

Subscribe: allaboutlymphangiectasia-subscribe@yahoogroups.com

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Lymphatic Disorders Support Group @ Yahoo Groups

While we have a number of support groups for lymphedema... there is nothing out there for other lymphatic disorders. Because we have one of the most comprehensive information sites on all lymphatic disorders, I thought perhaps, it is time that one be offered.

DISCRIPTION

Information and support for rare and unusual disorders affecting the lymph system. Includes lymphangiomas, lymphatic malformations, telangiectasia, hennekam's syndrome, distichiasis, Figueroa
syndrome, ptosis syndrome, plus many more. Extensive database of information available through sister site Lymphedema People.

http://health.groups.yahoo.com/group/lymphaticdisorders/

Subscribe: lymphaticdisorders-subscribe@yahoogroups.com

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Lymphedema People New Wiki Pages

Have you seen our new “Wiki” pages yet?  Listed below are just a sample of the more than 140 pages now listed in our Wiki section. We are also working on hundred more.  Come and take a stroll! 

Lymphedema Glossary 

http://www.lymphedemapeople.com/wiki/doku.php?id=glossary:listing 

Lymphedema 

http://www.lymphedemapeople.com/wiki/doku.php?id=lymphedema 

Arm Lymphedema  

http://www.lymphedemapeople.com/wiki/doku.php?id=arm_lymphedema 

Leg Lymphedema 

http://www.lymphedemapeople.com/wiki/doku.php?id=leg_lymphedema 

Acute Lymphedema 

http://www.lymphedemapeople.com/wiki/doku.php?id=acute_lymphedema 

The Lymphedema Diet 

http://www.lymphedemapeople.com/wiki/doku.php?id=the_lymphedema_diet 

Exercises for Lymphedema  

http://www.lymphedemapeople.com/wiki/doku.php?id=exercises_for_lymphedema 

Diuretics are not for Lymphedema 

http://www.lymphedemapeople.com/wiki/doku.php?id=diuretics_are_not_for_lymphedema 

Lymphedema People Online Support Groups 

http://www.lymphedemapeople.com/wiki/doku.php?id=lymphedema_people_online_support_groups 

Lipedema 

http://www.lymphedemapeople.com/wiki/doku.php?id=lipedema 

Treatment 

http://www.lymphedemapeople.com/wiki/doku.php?id=treatment 

Lymphedema and Pain Management 

http://www.lymphedemapeople.com/wiki/doku.php?id=lymphedema_and_pain_management 

Manual Lymphatic Drainage (MLD) and Complex Decongestive Therapy (CDT)

http://www.lymphedemapeople.com/wiki/doku.php?id=manual_lymphatic_drainage_mld_complex_decongestive_therapy_cdt 

Infections Associated with Lymphedema 

http://www.lymphedemapeople.com/wiki/doku.php?id=infections_associated_with_lymphedema 

How to Treat a Lymphedema Wound 

http://www.lymphedemapeople.com/wiki/doku.php?id=how_to_treat_a_lymphedema_wound 

Fungal Infections Associated with Lymphedema 

http://www.lymphedemapeople.com/wiki/doku.php?id=fungal_infections_associated_with_lymphedema 

Lymphedema in Children 

http://www.lymphedemapeople.com/wiki/doku.php?id=lymphedema_in_children 

Lymphoscintigraphy 

http://www.lymphedemapeople.com/wiki/doku.php?id=lymphoscintigraphy 

Magnetic Resonance Imaging 

http://www.lymphedemapeople.com/wiki/doku.php?id=magnetic_resonance_imaging 

Extraperitoneal para-aortic lymph node dissection (EPLND) 

http://www.lymphedemapeople.com/wiki/doku.php?id=extraperitoneal_para-aortic_lymph_node_dissection_eplnd 

Axillary node biopsy 

http://www.lymphedemapeople.com/wiki/doku.php?id=axillary_node_biopsy

Sentinel Node Biopsy 

http://www.lymphedemapeople.com/wiki/doku.php?id=sentinel_node_biopsy

 Small Needle Biopsy - Fine Needle Aspiration 

http://www.lymphedemapeople.com/wiki/doku.php?id=small_needle_biopsy 

Magnetic Resonance Imaging 

http://www.lymphedemapeople.com/wiki/doku.php?id=magnetic_resonance_imaging 

Lymphedema Gene FOXC2

 http://www.lymphedemapeople.com/wiki/doku.php?id=lymphedema_gene_foxc2

 Lymphedema Gene VEGFC

http://www.lymphedemapeople.com/wiki/doku.php?id=lymphedema_gene_vegfc

 Lymphedema Gene SOX18

 http://www.lymphedemapeople.com/wiki/doku.php?id=lymphedema_gene_sox18

 Lymphedema and Pregnancy

http://www.lymphedemapeople.com/wiki/doku.php?id=lymphedema_and_pregnancy

Home page: Lymphedema People

http://www.lymphedemapeople.com

Page Updated: Jan. 4, 2012