by Kathy Spozio

Peer Visitation Q and A Forum

Dear Kathy,

On more than one occasion while performing a peer visit I've been asked to recommend a prosthetist, or to tell who my prosthetist is and how I feel about the services I've received. I find this to be a very awkward question to answer. Does Amputee Coalition have any guidelines for handling a situation like this?

Judy

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Dear Judy,

These questions aren't uncommon ones for peer visitors to be asked. They make many others uncomfortable too. The rule of thumb is, neither question should be answered directly. Instead of recommending a prosthetist, you should recommend a method they can use to find one for themselves. Instead of telling who your prosthetist is and saying whether you are satisfied with the services you are receiving, you should point out that prosthetic services are intensely personal and that your own experience may not apply much to their unique situation.

As a peer visitor representing the Amputee Coalition (or, for that matter, representing your own support group) it's important to remain as neutral as possible when asked about recommending a prosthetist--or any other medical professional, for that matter. Of course, it's only human nature that the visitee will be interested in knowing about your prosthesis and who made it. The Amputee Coalition realizes that there are some questions that can't go unanswered and this is one of them, but a direct answer isn't the best one. 

In this instance it's suggested that you do not recommend any particular prosthetist; however, this is the perfect opportunity to offer the new amputee a list of several certified prosthetists in the area. Such a list is often compiled by the local support group or can be attained by contacting the Amputee Coalition. It's important to point out that each amputee has different needs and that each prosthetist has different strengths and weaknesses. As the article from the Amputee Resource Center referenced below so well conveys (and this is something you can diplomatically emphasize to the new amputee), "The important thing to remember when selecting a prosthetist is that you are the consumer and that you must research what's on the market just as you would when making any other important and expensive purchase." If you adopt this position, I believe, you will be less uncomfortable responding and better positioned to offer your assistance as well as that of your local support group and/or the Amputee Coalition.

The Amputee Coalition has published materials that will assist you in helping the new amputee determine how to choose a prosthetist. One resource from the Peer Visitors Resource Section involves Frequently Asked Questions About Prosthetics and Prosthetists, and is reproduced below. It's being used as part of the new certification program for training peer visitors that was recently initiated by the Amputee Coalition. You can use it as a personal peer visitation resource, as well as distribute it as a resource for your support group's peer visitors. It addresses questions like:

•  What do I need to know before I choose a prosthetist?
•  How do I locate services?
•  What should I take into consideration when choosing a facility and a prosthetist?
•  Meeting the practitioner (I call this the interview process)

A second Amputee Coalition resource that will assist you in answering questions along this line is an article titled "Choosing a Prosthetist," authored by Wendy Beattie, CPO, FAAOP. It can be found in the 2001 issue of First Step magazine and also on the Amputee Coalition Web site at:

http://www.amputee-coalition.org/first_step/firststepv2_s2a02.html

A third useful resource, called "How To Select a Prosthetist," although not published by Amputee Coalition, can be found at the Amputee Resource Center (ARC) which is part of the Western Amputee Support Alliance (WASA) Web site. Dick Mooney, editor of the Communicator, authored this article. It can be found at:

http://www.usinter.net/wasa/contents9g.html

(Those who are reading this in hard copy because they don't have Internet access, can obtain copies of these documents by calling the Amputee Coalition.)

Thanks, Judy, for bringing this issue to light. I hope this information will help you and other visitors handle this sometimes difficult circumstance well.

Frequently Asked Questions About Prosthetics and Prosthetists

Prosthetics:
What do I need to do to get ready for a prosthesis?

There is much you can and must do to get ready to use a prosthesis and use it well. The top priorities are:

•  working through the feelings about losing a limb and deciding how to rebuild your life after amputation,
•  preparing your residual limb to obtain a good shape for the prosthesis and reducing sensitivity,
•  learning proper body positioning and strengthening to maintain tone and prevent contractures, and
•  exercising to build the muscles needed for balance, endurance and ambulation.

When will I get a prosthesis?

Generally a few weeks after surgery, when the wound has healed and the tissue swelling has decreased, you will be ready for prosthetic measurements and fitting. This process can be hastened with exercise to increase strength, and the use of a shrinker to help shape the residual limb and decrease sensitivity.

What does a prosthesis look like? How will it stay on?

Depending on the level of your amputation, physical ability, functional needs and personal preference in the appearance of the device, a prosthetic limb is designed using a variety of different components which are attached to a socket that fits over your remaining limb.

How does a prosthesis work? Will I be able to do all the things I did before I lost my limb?

The majority of people who lose a limb can get back to normal within several months. How well they function depends primarily on their goals along with timely, comfortable prosthetic fitting, good follow up care and a "can do" attitude from the patient, as well as the professionals.

Is it easy to learn to use a prosthesis?

Learning to use a prosthesis is a tough job. It takes time, great effort, strength, patience and perseverance. You will do best by working with a therapist to learn how to handle the new device. You will need guidance on how to.

•  take care of the prosthesis,
•  put the new limb on and take it off,
•  walk on different types of surfaces including stairs and uneven terrain,
•  handle emergencies safely, including falling down and getting up again,
•  perform daily activities at home, work and in the car, and
•  investigate new things you may be uncertain of, including sports and recreational activities.

Can the limb break down?

Yes, things can happen which will require repair or replacement. It's a good idea to know about warranties and what to expect from the person who makes your prosthesis. Get small problems with your prosthesis taken care of promptly. There is no benefit to waiting until something falls apart or causes you skin breakdown or pain. If you wait too long for repairs or replacement, you can do serious harm to your residual limb and other parts of your body.

Strain on other muscles, especially in your back and shoulders will affect posture, in addition to performance of the device and energy needed to use it. Early prevention is more valuable than long-term treatment for problems.

Prosthetists:
What do I need to know before I choose a prosthetist?

First and foremost, it is a good idea to identify your needs. You can discuss your options with your physician, therapist or other specialists. Decide what is most important to you in terms of your lifestyle and activities prior to your limb loss and if you wish to return to those activities following your recovery, such as your vocation, leisure activities, hobbies, recreational interests, etc.

•  It is essential to gather all the information you can on what is available and appropriate for your level of functioning and type of amputation.
•  Make a list of your personal goals based on your lifestyle and needs.
•  Consider any concurrent medical problems that affect performance, circulation or healing. Make sure these are being monitored and factored into the plan.

How do I locate services?

You can request a listing of certified practitioners from the Amputee Coalition, your rehab team, a local amputee support group (if one is available) or your peer visitor.

What should I take into consideration when choosing a facility and prosthetist?

The relationship you develop with your prosthetist and the facility they are employed by is very important. It is important to choose a prosthetic office that is convenient for you to frequent. There will be multiple visits necessary during the manufacturing process and later for routine adjustments and maintenance. Your initial impressions and instincts about whether you can work successfully with a professional or facility are important. It will require open, honest communication and a willingness to problem solve together. There are many factors to consider:

• Observe the interaction of staff with patients from the front office throughout the facility..
• Are staff members helpful with phone calls, appointments, billing and customer service?
• Take note of the facility's convenience.
• Are there accessible restrooms and parking?
• How is the general atmosphere regarding cleanliness and comfort?
• Notice whether educational materials and patient resources are visible and available.
• Did the practitioner offer you information to read or view explaining options?
• Is there interest in all aspects of your adjustment or just delivering a device?

What questions should I ask when I meet with the prosthetist?

Rapport and communication are paramount. It is most important that the first meeting with the prosthetist be informative. In meeting the prosthetist, you should note whether he/she showed interest in your concerns. Does he/she listen and try to address your concerns honestly? The patient must ask every question that comes to mind and express every concern or fear. If you are not treated as part of the team now, don't expect your needs to be addressed later. 

Ask to meet the practitioner who will be fitting your prosthesis.

•  What are his/her credentials and training?
•  What is his/her experience fitting people with your particular type of limb loss?
•  Is there another patient (or two) with a similar amputation you could meet or talk to about their experience at the facility?
•  Are videos available to view other amputees with the same type of prosthesis?
•  Ask about prosthetic repairs and follow up service

Final Note:

A prosthesis is an artificial limb. It will not totally replace every quality and function of the one you lost. If anyone tells you it will, or if you expect it to, then you will be very disappointed! What you need to seek is a knowledgeable, competent practitioner who is sensitive to your needs, lifestyle and priorities. Together, you can work as a team to find the correct balance of function, cosmesis and comfort required. Together, you will meet challenges as you become more active and demanding in your use of the device. In the end, you will grow and solve problems together by applying new information and technology as it is available.

Be realistic about your expectations. Also, be patient with yourself and your team. Progress will be measured inch by inch and you must learn to walk before you can run. There are no miracles--only people who persist in seeking and working toward a goal.

If other support group leaders or peer visitation coordinators have information, advice and/or questions to share, please forward them by email directly to Kathy Spozio at mermaid@usachoice.net.