Reducing the symptoms of lymphoedema: is there a role for aromatherapy?
April 2006
Barclay J,
Vestey J,
Lambert A,
Balmer C.
Dorset Cancer Centre, Poole Hospital, Longfleet Road, Poole BH15 2JB, UK.
Lymphoedema is a chronic and debilitating condition caused by lymphatic insufficiency, which may have serious physical, social and psychological implications for the patient. It is usually managed by a combination of strategies aimed at protecting and decongesting the oedematous limb(s) and stimulating the development of supplementary lymphatic pathways to control swelling in the long-term. However, it is not known which therapies are the most effective.
Anecdotally, the addition of aromatherapy oils to massage cream may have a positive effect on symptom relief in people with cancer, although evidence is again lacking. This paper describes a randomized trial of self-massage and skin care using a cream containing aromatherapy oils versus self-massage and skin care using a cream without aromatherapy oils on objective limb volume measurements and symptom relief as measured by the Measure Yourself Medical Outcome Profile 2 (MYMOP2) in a sample of people with lymphoedema.
Results indicate that self-massage and skin care significantly improved patient-identified symptom relief and wellbeing for this sample. It also slightly, but not significantly reduced limb volume. However, aromatherapy oils, carefully chosen on the basis that they should benefit this group, did not appear to influence any improvement in these measures.
PMID: 16563861 [PubMed - indexed for MEDLINE]
Abstract
Wednesday, November 29, 2006
Saturday, November 11, 2006
Access to Physical Medicine and Rehabilitation Services Improvement Act of 2006 , S.3963
Access to Physical Medicine and Rehabilitation Services Improvement Act of 2006 , S.3963
* * * * * *
From: Pat O’Connor
Lymphedema People
* * * * * *
Dear Fellow Lymphedema Family Members:
As you may be aware of last year, the Center for Medicare and Medicaid Services (CMS) changed the rules for the reimbursement of decongestive therapy for lymphedema patients. What has happened since this ruling has been a loss of approximately one-third of the available treatment providers for lymphedema.
Here is a brief background:
On May 6, 2005, the Office for Medicare and Medicaid Services in the U.S. Department of Health and Human Services issued a new rule that limits reimbursement for "therapy services" to certain medical providers, when the therapy is billed "incident to" the services of a physician or nonphysician practitioner. The providers include those trained as physical therapists (PTs), occupational therapists (OTs), and speech-language pathologists. In addition, when state and local law permit, therapy services can be provided by physicians, physician assistants, clinical nurse specialists, and nurse practitioners.
Among the provider groups not included in this list are massage therapists. This means that doctors will not be able to continue billing for therapy services when they are provided by massage therapists. For many patients, this would not matter. But for lymphedema sufferers, it matters a great deal. "This ruling will be absolutely devastating for our patients," said Cheri Hoskins, owner of a lymphedema practice and Chair of Lymphedema Stakeholders. Because of the unusual way lymphedema therapy developed in the United States, manual lymphedema therapy is provided by a wide range of specialists, including doctors, nurses, PTs, OTs, physician assistants, and massage therapists (MTs). An estimated one-third to one-half of all lymphedema therapists nationwide are massage therapists, and in many parts of the country, the only lymphedema therapists within driving distance for patients are massage therapists. In those areas, the new Medicare rule means that entire lymphedema practices will close. Already, two practices have been forced to close as physicians have anticipated the effect of the new rule - leaving literally hundreds of patients stranded without treatment. And other practices are making plans to close because they estimate they will only be able to afford to stay in business for a few months.
Who Will Be Affected by the Rule?
All lymphedema patients -- not just those receiving Medicare benefits -- will be hurt. For patients, "the inevitable result of this rule will be a significant reduction in the number of lymphedema therapists, and therefore longer waiting periods to see the therapists who remain, less time available for treatment, and higher prices,"
Click on this link for a complete copy of his proposed legislation***
Now that we have a senator who is willing to sponsor this, it is now up to us to decide our own fate. It is often said that bad things happen because good people do nothing.
The good people of our lymphedema family can do something. It is imperative that we let our congressional respresentatives know our position and support for full access to the very treatment that our health, well-being and even lives depend on.
Here are samples letters for you to send. Modify it if you need to, but please take the time to act on your own behalf. Also included is a doctor’s support letter that you can take to your physicians.
SAMPLE ONE: LYMPHEDEMA PATIENT LETTER
Re: Please support the Access to Physical Medicine and Rehabilitation Services Improvement Act, S.3963
Dear Senator or Representative INSERT NAME
As your constituent, I am asking you to co-sponsor the Access to Physical Medicine and Rehabilitation Services Improvement Act (S.3963). This legislation is important because improves access to life-saving physical medicine and rehabilitation services for millions of Medicare beneficiaries. This bill does not expand services and will result in both short- and long-term savings for Medicare.
I am a lymphedema patient, and my ability to find qualified health care professionals to treat my condition has been severely restricted by a rule instituted by the Centers for Medicare and Medicaid Services (CMS) in June 2005. Congress did not authorize the “therapy-incident to” rule, which resulted in the loss of one-third of the educationally and clinically qualified providers to lymphedema patients. These specially certified massage therapists are supervised in the physician’s office by the physician and perform services currently approved by Medicare. However, Medicare no longer allows them to be reimbursed—an unauthorized change to a seven-year policy. This reimbursement policy is now trickling down into the commercial insurance payment system, which puts even more stress on the health care system.
Between 3 and 5 million Americans are afflicted with lymphedema. An estimated one-third (33 percent) of breast cancer survivors are affected because of surgery and radiation. For others, it is hereditary. There are many types of lymphedema, but it is when a limb—generally and arm or leg—swells uncontrollably because of damage to the lymph system. Lymphedema can be treated effectively but there is no cure. The savings to Medicare are significant when it is caught early and treated by qualified, certified therapists.
S.3963 will do three things:
1. Improve access to quality health care for Medicare beneficiaries
2. Reinstate physician choice of which qualified health care professionals they can hire to perform this treatment in their offices.
3. Provide cost savings to the Medicare program for services that are already covered.
Without this legislation, the power of choice for quality, affordable, accessible medical care will be in the hands of Medicare and insurance companies, not in the hands of the physicians and patients where it belongs.
Please contact me for more details or our Washington DC representative Bill Finerfrock at 202.544.1880 or bf@capitolassociates.com.
For more information on lymphedema, go to Lymphedema People or The National Lymphedema Network .
Sincerely,
YOUR NAME, COMPLETE ADDRESS, PHONE AND EMAIL
......
SAMPLE TWO:
We the members of the Lymphedema People national network of websites and support groups for lymphatic medical conditions support without qualification the Access to Physical Medicine and Rehabilitation Services Improvement Act (S.3963) introduced by Sen. Craig Thomas of Wyoming. We thank Senator Thomas for his leadership role in introducing this legislation, and gratefully acknowledge this support in providing medical care to Medicare beneficiaries with lymphedema.
We implore Congress to work in a bi-partisan fashion to quickly pass this legislation and:
· Restore patient access to high quality, medically necessary health care services
· Restore the ability of physicians to practice medicine and hire and supervise the most qualified health care professionals
· Save money for the Medicare system by passing and implementing this law
Lymphedema People is a community created for, and by, people with the medical condition of lymphedema. Our mission is to:
· To provide lymphedema information to the people it affects
· To inform them about the condition, it's causes, complications, and treatments
· To share the knowledge that life does not end with lymphedema, there is hope.
To share a life with lymphedema that is rich, fulfilling and very rewarding.
We have shared now our message of this hope with more then 1,000,000 visitors to our main website.
Sincerely,
OUR NAME, COMPLETE ADDRESS, PHONE AND EMAIL
......
SAMPLE LETTER THREE (Physicians)
Re: Please Support the Access to Physical Medicine and Rehabilitation Services Improvement Act (S.3963) Dear
I am a physician who works with lymphedema patients. Because of a capricious and ill-advised rule made by the Centers for Medicare and Medicaid Services (CMS) in 2005, I can no longer employ the most qualified, most effective health care professionals to provide treatment to my lymphedema patients. With the “therapy-incident to” rule, physicians like me can no longer receive reimbursement for the complete decongestive therapy (CDT) provided by specialty certified massage therapists. CMS restricted who can provide ‘therapy-incident to” without Congressional approval and is applying standards that don’t make sense in the physical medicine and rehabilitation field of medicine.
The result of this rule is devastating to my patients, many of whom are breast cancer survivors. In fact, at least 60 percent of women who have had a mastectomy will develop lymphedema. Other patients develop lymphedema because it is hereditary. In all cases it is treatable and can prevent death, but it is an incurable, devastating disease.
S.3963 will do three things:
1. Restore and improve patient access to the most qualified health care professionals.
2. Will restore physician choice of who they can hire and supervise to perform CDT and other treatments, and be reimbursed for those services. Note that this is not an expansion of Medicare services.
3. It will save Medicare an estimated 38 percent on physical medicine and rehabilitation services provided in physician offices, according to two different MedPAC reports.
Failure to provide lymphedema therapy treatment under Medicare Part B will result in net increased Medicare Part A program costs of approximately $120 Million annually, according to the Coalition to Preserve Patient Access to Physical Medicine and Rehabilitation. The other therapists that are included in S.3963 will also save money for Medicare and will not add any new services.
CMS bureaucrats should not be practicing medicine. Please cosponsor S.3963.
You can contact me for more details or our Washington DC representative Bill Finerfrock at 202.544.1880 or bf@capitolassociates.com. For more information on lymphedema, go to Lymphedema People or National Lymphedema Network .
Sincerely,
name, full address, Phone, email
SAMPLE FOUR Physician Letter
I am a PHYSICIAN OR OTHER HEALTH CARE PROFESSIONAL and I rely on and work with certified athletic trainers. The 30,000 athletic trainers in the U.S. help me provide high quality, medically necessary health care services to an estimated 16 million patients each year. They are an important part of the health care system and my medical team. Athletic trainers help ensure patient access to quality health care in this time of workforce shortages.
My ability to work with athletic trainers has been impeded by an unfair rule made by the Center for Medicare and Medicaid Services (CMS) in July 2005. The CMS rule limits the ability of physicians to choose who can provide therapy services to Medicare beneficiaries. This ill conceived policy is causing serious problems with access to quality health care. It affects athletic trainers, lymphedema therapists, low-vision therapists and many other certified health care professionals.
By cosponsoring S.3963, the Access to Physical Medicine and Rehabilitation Services Improvement Act, and pressing for its speedy vote and passage you can ensure a higher quality of health care. S.3963 will restore the ability of physicians and patients to have access to the most qualified health care professionals.
Athletic trainers are nationally certified health care providers with proven clinical skills. Please regard this postcard as a statement supporting athletic trainers. I urge you to cosponsor S.3963 and press for a quick vote and passage to correct this harmful federal policy that is trickling down to private insurance companies. Without this legislation, the power of choice for medical care will be in the hands of insurance companies and bureaucrats, not in the hands of the physicians and patients where it belongs. Who do you want making your health care decisions?
Sincerely,
name, full address, Phone, email
==========
Information and Resources:
Lymphedema People
* * * * * *
From: Pat O’Connor
Lymphedema People
* * * * * *
Dear Fellow Lymphedema Family Members:
As you may be aware of last year, the Center for Medicare and Medicaid Services (CMS) changed the rules for the reimbursement of decongestive therapy for lymphedema patients. What has happened since this ruling has been a loss of approximately one-third of the available treatment providers for lymphedema.
Here is a brief background:
On May 6, 2005, the Office for Medicare and Medicaid Services in the U.S. Department of Health and Human Services issued a new rule that limits reimbursement for "therapy services" to certain medical providers, when the therapy is billed "incident to" the services of a physician or nonphysician practitioner. The providers include those trained as physical therapists (PTs), occupational therapists (OTs), and speech-language pathologists. In addition, when state and local law permit, therapy services can be provided by physicians, physician assistants, clinical nurse specialists, and nurse practitioners.
Among the provider groups not included in this list are massage therapists. This means that doctors will not be able to continue billing for therapy services when they are provided by massage therapists. For many patients, this would not matter. But for lymphedema sufferers, it matters a great deal. "This ruling will be absolutely devastating for our patients," said Cheri Hoskins, owner of a lymphedema practice and Chair of Lymphedema Stakeholders. Because of the unusual way lymphedema therapy developed in the United States, manual lymphedema therapy is provided by a wide range of specialists, including doctors, nurses, PTs, OTs, physician assistants, and massage therapists (MTs). An estimated one-third to one-half of all lymphedema therapists nationwide are massage therapists, and in many parts of the country, the only lymphedema therapists within driving distance for patients are massage therapists. In those areas, the new Medicare rule means that entire lymphedema practices will close. Already, two practices have been forced to close as physicians have anticipated the effect of the new rule - leaving literally hundreds of patients stranded without treatment. And other practices are making plans to close because they estimate they will only be able to afford to stay in business for a few months.
Who Will Be Affected by the Rule?
All lymphedema patients -- not just those receiving Medicare benefits -- will be hurt. For patients, "the inevitable result of this rule will be a significant reduction in the number of lymphedema therapists, and therefore longer waiting periods to see the therapists who remain, less time available for treatment, and higher prices,"
Click on this link for a complete copy of his proposed legislation***
Now that we have a senator who is willing to sponsor this, it is now up to us to decide our own fate. It is often said that bad things happen because good people do nothing.
The good people of our lymphedema family can do something. It is imperative that we let our congressional respresentatives know our position and support for full access to the very treatment that our health, well-being and even lives depend on.
Here are samples letters for you to send. Modify it if you need to, but please take the time to act on your own behalf. Also included is a doctor’s support letter that you can take to your physicians.
SAMPLE ONE: LYMPHEDEMA PATIENT LETTER
Re: Please support the Access to Physical Medicine and Rehabilitation Services Improvement Act, S.3963
Dear Senator or Representative INSERT NAME
As your constituent, I am asking you to co-sponsor the Access to Physical Medicine and Rehabilitation Services Improvement Act (S.3963). This legislation is important because improves access to life-saving physical medicine and rehabilitation services for millions of Medicare beneficiaries. This bill does not expand services and will result in both short- and long-term savings for Medicare.
I am a lymphedema patient, and my ability to find qualified health care professionals to treat my condition has been severely restricted by a rule instituted by the Centers for Medicare and Medicaid Services (CMS) in June 2005. Congress did not authorize the “therapy-incident to” rule, which resulted in the loss of one-third of the educationally and clinically qualified providers to lymphedema patients. These specially certified massage therapists are supervised in the physician’s office by the physician and perform services currently approved by Medicare. However, Medicare no longer allows them to be reimbursed—an unauthorized change to a seven-year policy. This reimbursement policy is now trickling down into the commercial insurance payment system, which puts even more stress on the health care system.
Between 3 and 5 million Americans are afflicted with lymphedema. An estimated one-third (33 percent) of breast cancer survivors are affected because of surgery and radiation. For others, it is hereditary. There are many types of lymphedema, but it is when a limb—generally and arm or leg—swells uncontrollably because of damage to the lymph system. Lymphedema can be treated effectively but there is no cure. The savings to Medicare are significant when it is caught early and treated by qualified, certified therapists.
S.3963 will do three things:
1. Improve access to quality health care for Medicare beneficiaries
2. Reinstate physician choice of which qualified health care professionals they can hire to perform this treatment in their offices.
3. Provide cost savings to the Medicare program for services that are already covered.
Without this legislation, the power of choice for quality, affordable, accessible medical care will be in the hands of Medicare and insurance companies, not in the hands of the physicians and patients where it belongs.
Please contact me for more details or our Washington DC representative Bill Finerfrock at 202.544.1880 or bf@capitolassociates.com.
For more information on lymphedema, go to Lymphedema People or The National Lymphedema Network .
Sincerely,
YOUR NAME, COMPLETE ADDRESS, PHONE AND EMAIL
......
SAMPLE TWO:
We the members of the Lymphedema People national network of websites and support groups for lymphatic medical conditions support without qualification the Access to Physical Medicine and Rehabilitation Services Improvement Act (S.3963) introduced by Sen. Craig Thomas of Wyoming. We thank Senator Thomas for his leadership role in introducing this legislation, and gratefully acknowledge this support in providing medical care to Medicare beneficiaries with lymphedema.
We implore Congress to work in a bi-partisan fashion to quickly pass this legislation and:
· Restore patient access to high quality, medically necessary health care services
· Restore the ability of physicians to practice medicine and hire and supervise the most qualified health care professionals
· Save money for the Medicare system by passing and implementing this law
Lymphedema People is a community created for, and by, people with the medical condition of lymphedema. Our mission is to:
· To provide lymphedema information to the people it affects
· To inform them about the condition, it's causes, complications, and treatments
· To share the knowledge that life does not end with lymphedema, there is hope.
To share a life with lymphedema that is rich, fulfilling and very rewarding.
We have shared now our message of this hope with more then 1,000,000 visitors to our main website.
Sincerely,
OUR NAME, COMPLETE ADDRESS, PHONE AND EMAIL
......
SAMPLE LETTER THREE (Physicians)
Re: Please Support the Access to Physical Medicine and Rehabilitation Services Improvement Act (S.3963) Dear
I am a physician who works with lymphedema patients. Because of a capricious and ill-advised rule made by the Centers for Medicare and Medicaid Services (CMS) in 2005, I can no longer employ the most qualified, most effective health care professionals to provide treatment to my lymphedema patients. With the “therapy-incident to” rule, physicians like me can no longer receive reimbursement for the complete decongestive therapy (CDT) provided by specialty certified massage therapists. CMS restricted who can provide ‘therapy-incident to” without Congressional approval and is applying standards that don’t make sense in the physical medicine and rehabilitation field of medicine.
The result of this rule is devastating to my patients, many of whom are breast cancer survivors. In fact, at least 60 percent of women who have had a mastectomy will develop lymphedema. Other patients develop lymphedema because it is hereditary. In all cases it is treatable and can prevent death, but it is an incurable, devastating disease.
S.3963 will do three things:
1. Restore and improve patient access to the most qualified health care professionals.
2. Will restore physician choice of who they can hire and supervise to perform CDT and other treatments, and be reimbursed for those services. Note that this is not an expansion of Medicare services.
3. It will save Medicare an estimated 38 percent on physical medicine and rehabilitation services provided in physician offices, according to two different MedPAC reports.
Failure to provide lymphedema therapy treatment under Medicare Part B will result in net increased Medicare Part A program costs of approximately $120 Million annually, according to the Coalition to Preserve Patient Access to Physical Medicine and Rehabilitation. The other therapists that are included in S.3963 will also save money for Medicare and will not add any new services.
CMS bureaucrats should not be practicing medicine. Please cosponsor S.3963.
You can contact me for more details or our Washington DC representative Bill Finerfrock at 202.544.1880 or bf@capitolassociates.com. For more information on lymphedema, go to Lymphedema People or National Lymphedema Network .
Sincerely,
name, full address, Phone, email
SAMPLE FOUR Physician Letter
I am a PHYSICIAN OR OTHER HEALTH CARE PROFESSIONAL and I rely on and work with certified athletic trainers. The 30,000 athletic trainers in the U.S. help me provide high quality, medically necessary health care services to an estimated 16 million patients each year. They are an important part of the health care system and my medical team. Athletic trainers help ensure patient access to quality health care in this time of workforce shortages.
My ability to work with athletic trainers has been impeded by an unfair rule made by the Center for Medicare and Medicaid Services (CMS) in July 2005. The CMS rule limits the ability of physicians to choose who can provide therapy services to Medicare beneficiaries. This ill conceived policy is causing serious problems with access to quality health care. It affects athletic trainers, lymphedema therapists, low-vision therapists and many other certified health care professionals.
By cosponsoring S.3963, the Access to Physical Medicine and Rehabilitation Services Improvement Act, and pressing for its speedy vote and passage you can ensure a higher quality of health care. S.3963 will restore the ability of physicians and patients to have access to the most qualified health care professionals.
Athletic trainers are nationally certified health care providers with proven clinical skills. Please regard this postcard as a statement supporting athletic trainers. I urge you to cosponsor S.3963 and press for a quick vote and passage to correct this harmful federal policy that is trickling down to private insurance companies. Without this legislation, the power of choice for medical care will be in the hands of insurance companies and bureaucrats, not in the hands of the physicians and patients where it belongs. Who do you want making your health care decisions?
Sincerely,
name, full address, Phone, email
==========
Information and Resources:
Lymphedema People
Tuesday, November 07, 2006
An unusual case of lymphedema tarda.
An unusual case of lymphedema tarda.
Hosnuter M,
Buyukates M,
Babuccu B.
Department of Plastic Reconstructive and Aesthetic Surgery, Zonguldak Karaelmas University Medical School, Kozlu/Zonguldak, Turkey.
BACKGROUND:
Lymphedema is the result of the equilibrium between the load to be cleared and the transport capacity of the clearing system. Lymphedema may be classified as primary or secondary, based on the underlying etiology. Primary lymphedema is an unusual disorder characterized by inadequate lymphatic drainage. Lymphedema tarda is a rare form of primary lymphedema.
CASE REPORT:
The case of lymphedema tarda documented here was chronic, progressive, and resistant to medical therapy and recurred several times after previous operations.
CONCLUSIONS:
We performed two-staged operations and we recommend that the staged excisional procedures offers reliable long-term improvement and minimizes postoperative complications in chronic advanced lymphedema.
Full PDF Article
Commentary:
Even after studying this case history, I am still opposed to surgical means for the correction of lymphedema. Complex Decongestive Therapy should and must be the first treatment option on lymphedema.
Please refer to my article:
Complications of Lymphedema Debulking Surgeries
I have seen horrendous cases of lymphedema treated successfully using CDT as a primary treatment option. The case literature has extensive documentation that these doctors should have referred to before undertaking these surgical procedures.
Pat O'Connor
Hosnuter M,
Buyukates M,
Babuccu B.
Department of Plastic Reconstructive and Aesthetic Surgery, Zonguldak Karaelmas University Medical School, Kozlu/Zonguldak, Turkey.
BACKGROUND:
Lymphedema is the result of the equilibrium between the load to be cleared and the transport capacity of the clearing system. Lymphedema may be classified as primary or secondary, based on the underlying etiology. Primary lymphedema is an unusual disorder characterized by inadequate lymphatic drainage. Lymphedema tarda is a rare form of primary lymphedema.
CASE REPORT:
The case of lymphedema tarda documented here was chronic, progressive, and resistant to medical therapy and recurred several times after previous operations.
CONCLUSIONS:
We performed two-staged operations and we recommend that the staged excisional procedures offers reliable long-term improvement and minimizes postoperative complications in chronic advanced lymphedema.
Full PDF Article
Commentary:
Even after studying this case history, I am still opposed to surgical means for the correction of lymphedema. Complex Decongestive Therapy should and must be the first treatment option on lymphedema.
Please refer to my article:
Complications of Lymphedema Debulking Surgeries
I have seen horrendous cases of lymphedema treated successfully using CDT as a primary treatment option. The case literature has extensive documentation that these doctors should have referred to before undertaking these surgical procedures.
Pat O'Connor
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