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The Forgotten Patients: Wound Care Centers and Amputees

Joe Sansone, CEO of the Amputee and Prosthetic Center

May 2009

  Whether you are treating an infection to prevent amputation, or treating an amputee who is fighting a wound on another extremity, wound care centers and amputees spend a lot of time together. The correlation is not surprising, considering that a foot ulcer precedes an estimated 85% of all non-traumatic amputations. Unfortunately, many wound care providers are unwittingly caught up in an assembly line of care when it comes to the treatment of amputee patients. Wound care centers are not prosthetic providers and many times they are left feeling helpless when it comes to offering the assistance that their amputee patients so clearly need.

Assembly Line of Care

  All too often, by the time a patient loses his or her limb, he or she has been lost in an assembly line of care. They may have been passed along from one healthcare provider to another, left feeling lost with nowhere to turn. The following scenario may not be uncommon: A diabetic patient visits his primary care physician for a small ulceration on their foot. The PCP then refers the patient to a podiatrist who treats the wound. After weeks or months of unsuccessful treatment, the podiatrist may pass the patient on to an Internal Medicine Specialist, and thereafter to a wound care center. After unsuccessful treatment at the wound care center, an amputation cannot be avoided and the orthopedic surgeon performs the amputation. Following the amputation, the patient lies alone in the hospital bed, looking down where his leg used to be, feeling hopeless and helpless. In all of the confusion, the patient has lost track of who their actual physician is, and has no idea what the future holds as an amputee. Unfortunately, at this stage of the process, the prosthetic provider becomes just another face in the crowd, or worse has never even been contacted.

Where Does the Wound Care Center Enter Into the Prosthetic Process?

  While wound care centers provide an invaluable service in the prevention of amputations, once a patient loses a limb, what is the role of the wound care center? What can we do to ensure the continuity of care to the amputee?

  Dr. Caroline Fife, Chief Medical Officer for Intellicure, Inc. (The Woodlands, Tex) said that historically, wound care centers end up being ‘the last resort.’

   “We are often just a stopover for those who suffer the loss of a limb,” Fife says. “Whether wound care fails resulting in an amputation, or a wound on the residual limb is treated and healed, we treat the wound and sometimes never see the patient again. I don’t usually do any stump management like shrinking or molding. We assume the surgeon does that, but I do wonder.”

  Dr. Fife is not alone in this disconnect between providers and the amputee that can leave the patient feeling lost in medical bureaucracy.

Gaps in Coverage

  Dr. Fife says that the biggest problem faced by amputees is the fact that many insurance companies do not pay for prosthetic devices on par with Medicare, which makes it impossible for many patients to procure the help they need.

  “Many of my patients are elderly with poor rehab potential,” Fife said. Often these patients have other health issues, such as heart disease, that prohibit them from participating in effective rehabilitation programs. Many amputees do not have the balance to walk on prosthesis so they are wheelchair bound.

   “Because so many elderly patients don’t drive or use computers, their access to support is nearly nonexistent,” according to Fife. Even though these patients may not be candidates for a limb, moral support for these patients is a critical issue.

Amputee Support Groups

  Finding a forum to discuss the issues that amputees face on a daily basis is vital and amputee support groups have proved very helpful in assisting amputees. One of the most beneficial roles that support groups play is with helping acclimate newer amputees back to society. Many amputees are hesitant about getting involved in a support group, but the Amputee Coalition of America (ACA) certified peer visitor Jody Graham feels they truly make a difference. The ACA (www.amputee-coalition.org) is a national non-profit amputee organization, which serves as a resource for amputee support groups around the country. She is also the leader of Amputees in Action in Houston, Texas.

   “We don’t really call ourselves an amputee support group; we call ourselves an amputee social group. When we first began meeting it seemed as if our meetings became a complaint session and that’s not what we wanted it to be about,” Graham said. “So now we focus on just having fun. Rest assured when you gather a group of amputees together for an event like bowling or a day at the horse races, the amputees talk with each other about what it’s like to be an amputee. It’s not uncommon to hear discussion on liners or hear another amputee giving tips on driving, or performing various daily tasks.”

  One of ACA’s special events was a horseracing event.

   “An elderly bilateral amputee gentleman who had not yet received his limbs came with his obviously concerned son,” she said. “They kept to themselves at first and were apprehensive, but soon you could see the son’s eyes light up as other bilateral amputees talked to his father about what life would be like. You could see how much it meant to not only the amputee, but to his son when they learned that there was life after amputation.”

Meeting Patients’ Needs

  Education regarding wound care and management are crucial. There are a variety of resources available to amputees; however, many amputees do not know what is offered or where to look. Surprising to some, the quickest way to find assistance is to search the Internet. A search utilizing a city’s name and ‘amputee support’ or “prosthetics” will open up a world of possibilities for amputees. The most prevalent assistance for amputees comes in the form of the ACA, which offers a variety of resources to amputees, including a library with hundreds of books, booklets, and videos addressing a range of issues important to amputees from phantom pain and wound care to rehabilitation.

Peer Visitors

  Perhaps the most valuable resource of the ACA is the services of a peer visitor. A peer visitor is an amputee who visits patients either before or after the loss of a limb to answer any questions and counsel him or her on what it’s like to be an amputee. One call to the ACA, and they will send a certified peer visitor to visit any amputee. Both male and female peer visitors are available in almost any age group. Unilateral, bilateral, upper extremity or lower extremity, in most areas, the ACA can offer assistance.

  Graham has performed approximately 1000 of these peer visits in the past few years. Graham lost her leg in an auto accident in 2003.

   “I was sad and debilitated and wondered what would become of my life, and I had no idea what the future held in store for me,” she said. “After months of despondency and worrying, when I received my limb I realized that I was going to be OK, that I could do almost everything that I could before my amputation. And then I remembered what it was like to lay in a hospital bed, stressing over nothing. I would have given anything if I could have talked to an amputee at that time.”

  After this realization, Graham decided she was determined to do what she could to help other amputees in her situation—but she couldn’t find an outlet to help. When Graham heard that the ACA was holding peer visitor training in her hometown of Houston, Tex, she jumped at the opportunity.

   “I couldn’t believe that after having so many doors shut in my face here was a national entity that was here to train me on the very thing that I wanted to do,” she said.

Finding a Prosthetic Provider

  For many, finding a prosthetic company for their patients is an arduous task. Once again the Internet can be a valuable resource, as well as the American Board of Certification in Orthotics and Prosthetics (www.abcop.com). This certifying board requires that providers reach educational and examination achievements as well as adhere to standards of care. A wound care center can also verify that facilities as well as practitioners have been certified.

  Wound Care Centers can play a pivotal role in helping their amputee patients choose a provider. There is no one practitioner that can be all things to all patients; just as in choosing any medical provider, the patient should exercise their right to find their perfect match. Some practitioners excel in upper and lower extremities while some have ample experience fitting the new micro-processor controlled limbs, and some fit only a few per year. Patients should be encouraged to meet many providers and choose one with whom they are comfortable.

  Once the prosthetic provider enters the picture, and a limb is delivered, many might think that the patient’s needs have been met and the amputee can then move on. This is not the case. According to Ben Falls, Chief Prosthetist at the Amputee and Prosthetic Center in Houston, Tex, good prosthetic care doesn’t stop with the delivery of a prosthetic device. A quality prosthetic provider will follow up with patients, seeing them a minimum of four or five times in the three month period following the final delivery of the prosthetic device.

   “When a provider receives payment for the prosthetic limb, that payment covers all office visits, adjustments, and warranty work for a period of up to five years,” Falls said. “So when we deliver a limb, we are constantly tweaking it afterwards until we achieve perfection. Practitioners realize that amputees must have an almost perfect fit in order to achieve the results that they want and maintain the lifestyle they desire and deserve.”

  If an amputee were not content with the care given by the prosthetic provider, it would be in their best interest to seek out another company. Wearing prosthesis is now a part of life and she needs to feel confident that her provider will be there if she needs an adjustment, breaks the limb or needs any other assistance to ensure she is never hindered by a prosthetic device.

Wound Care’s Opportunity

  Even though the wound care center is not a prosthetic provider, employees can be invaluable tools in assisting amputee patients with their prosthetic needs. Do some homework for your patients and search out the prosthetic providers in your area. Ask the prosthetic questions and ensure that they have an amputee program that treats the entire patient, and doesn’t just “slap on a limb” Create a database of prosthetic providers in your area that truly care for their patients and provide this information to your patients. Finally encouraging patients to enroll in the Amputee Coalition of America ensures that amputees will have a lifeline to resources and that they will receive regular updates on issues of importance to amputees.

  Joe Sansone is CEO of TMC Orthopedic and the Amputee and Prosthetic Center and is the founder of Limbs of Love, a charitable organization that provides prosthetic limbs to patients without insurance coverage. Sansone was named “Professional of the Year” in 2008 by the ACA in recognition for his commitment to advocacy for the amputee community. Visit www.myamputee.com for more information.

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