Jump to content
Heather Mills - Amputee Forum
Ally

Finding the CP you want

Recommended Posts

I have posted this in another forum, apologies for anyone bumping into a duplicate here...

How do you find a prosthetist who will give you what YOU want??

Please bear in mind that this is written from a South African amputee's point of view. It is purely a meanderous musing from where I am at the moment. And probably where I shall stay for a while...

Today is a freezing cold May day in SA. Wrapped up in a blanket, I was paging through one of our popular woman's magazines when I came across a full page advertisement.

A nose job clinic in a state-of-art surgical facility, who have performed nearly 20,000 procedures over the last 30 years. You can book yourself in, have a look at what they offer (here dear, what about THIS nose for you today), and come away with a new and improved face.

Just like that.

You don't need to be referred. You don't need to have a medical reason. It's all very simple.

Now I understand that cosmetic surgery has been around for years and years. I understand that it will probably never go away as long as there are people who are not happy with their God given looks. Nothing wrong with that. Nothing at all. It is your body, you have complete control over it. You have the choice.

Now see, there is the kicker. YOU HAVE THE CHOICE! You can leaf through a magazine and choose the best 'supplier' (if you will) according to how glossy their ads are, and what exactly it is that they specialise in and have on offer.

So barrel back with me...you are an amputee...you have been a good child and done all your research into prosthetics and found what you think you'd like to have, or at least test drive. You have the money/insurance, you are a consenting adult. But how do you find a prosthetist who can actually give you what you want?

Let's talk knees for a moment here. There are loads to choose from. But not all prosthetists are qualified to fit them. A lot of the up-market knees require the CP to go for a course on how to check for a good candidate, and how to set the alignment so it works.

Your designated or chosen prosthetist may very well be clueless when it comes to setting you up with a C-Leg, or a Rheo knee. What then?

Let's talk sockets. There is a huge amount of ongoing training that happens with our CP's to keep up to date with the latest trends and designs. What happens if the new Mexican MAS socket has bowled you over, and it is what you have decided you'd like to try. There is an intensive training course that the CP has to do in order to make a true MAS socket. What if your prosthetist can't make them. What then?

Where do we, the Joe Schmoe Amputee public let our fingers do the walking to find someone who can give us what we want?

I'll tell you where....

Nowhere. No advertising allowed. Sorry for you. Our CP's are bound and gagged by their very own profession's ethical code. I can find you any number of clinics who will chop off your nose or increase your bust. I can find you specialised dentistry clinics who will grind away all your natural teeth and give you fine looking caps. Let's face it - we can find almost anyone in the yellow pages to refine, define, change and rearrange the way we look to the outside world.

How much less important is becoming a mobile and productive person? Surely the disability of an amputee is worth far more than the facial lift of someone who could age gracefully with no tangible consequence on their ability to be useful to their community?

The answer has got to be a resounding YES. My missing leg is more important than someone's prominent nose. And getting somebody like me up and going again is certainly less invasive than trimming off a nasal profile.

Taking 10 year's worth of smile lines off of someone's face is not more important than getting a 17 year old amputee walking, giving them their lives back. It is not more important than fitting an elderly amputee with a decent leg so they can maintain their independance.

And yet we are purposefully kept in the dark. Important information is carefully kept hidden. To what end? To now say "nobody cares" might be construed as flippancy, but I shall maintain that stance until someone can explain this ludicrous reasoning. It is archaic and unforgiveable.

There is a CP I know who placed a small advertisement in a health section of a newspaper, letting amputees know that he was qualified to supply and fit a certain type of power-leg. He was officially reprimanded, a formal complaint lodged against him. Oh puhleeze, give me strength!

So if you are a South African amputee reading this, please remember that you have a CHOICE. And you have the absolute RIGHT to be treated by someone who is qualified in the prosthetics that YOU need.

Not all car mechanics can work on all makes of cars. Prosthetists are the same.

Finding the CP you want? You may as well spit into the wind. It seems that even in the new and improved South Africa, amputees are still having the proverbial finger waved at them.

My two cents...a resounding HERE HERE to freedom of speech and the power of advertising. <_<

Share this post


Link to post
Share on other sites

Hi Ally,

we seem to be having the same sort of weather! Cold, wet and very windy. So I have some spare time and have read your post.

You make a very good point, but I have a feeling that the same situation occurs in other countries. Plastic surgery here in the UK has got to such a point that they give free holidays if you have certain procedures done.

However, as regards CP's, we have a system (National Health Service, paid by weekly contributions and run by the Government) so in theory we don't have to pay anything for a prosthesis. The downside is that initially you have to go to your area Limb clinic. And there is a very wide difference between the Limb fitting clinics. The standards, type of limb provided. This is dependant upon the prosthesitist, Health service budget. I would have thought there was a 'National' standard, so the same service provision was 'uniform' through out the country.

When I was fitted with an 'Ultimate' knee and Flexi-foot, I was very lucky that this 'rig' worked for me. It was a learning curve for the prosthesitist and myself, because the only knowledge he had; was with the manual he received with the 'rig'. I spent 6 hours with him when it was first fitted, testing, adjustments, more testing etc! This was followed by intensive physio-therapy, and it worked out fine.

As said I was lucky, but I fear I am in the minority on this.

I have met many Amputee's in the UK who have had lot's of problems with the fitting, choice etc of prosthesis, even to the point where some have given up and just use a wheelchair.

As said, a very good point!

As.......

Steve

Share this post


Link to post
Share on other sites

Hey Ally I think you raise some great points but they are by no means confined to South Africa.

In Oz we can all get free stuff. On the condition, of course, that you accept the basics and if you want more then you will pay for it. That's AFTER you speak to your prosthetist and he tries to discourage you upgrading.

Sadly, and this is just my opinion, we are always going to complain about this until we have the power in our hands the make decisions for ourselves. At the moment if you have unlimited funds you have that freedom to choose. One day I hope we all have that freedom.

( Jumps down from soap box)

Share this post


Link to post
Share on other sites

Hi Cat

I agree with you. However, my biggest gripe at the moment is that we can't even FIND what we are looking for, before finances even become a hurdle. I would like to see amputees being able to source what they want, and then deciding whether they can pursue that option or not.

What is it with our CP's?? Our 'board' have decided that advertising your skills is strictly prohibited. So you get CP's who really make an effort to stay on top of things, and continually go for training, and then sit with their certificates and knowledge and hope to God that they can offer these things to amputees who need them. Because really, finding a CP and patient that 'click' is really a miracle at the moment.

:angry:

Share this post


Link to post
Share on other sites

I think it comes down to freedom of choice Ally...your choice and the prosthetists choice.

As long as people with "outside interests" continue to strangle us and them we are always going to have problems.

Vive La Revolution :lol: :lol:

Share this post


Link to post
Share on other sites
Vive La Revolution :lol: :lol:

Whooooohooooo - we can all stand on street corners and burn our old legs.....

B)

Share this post


Link to post
Share on other sites

Vive La Revolution :lol: :lol:

Whooooohooooo - we can all stand on street corners and burn our old legs.....

B)

:lol: :lol: :lol:

Mine will only melt dammit :angry:

Share this post


Link to post
Share on other sites

Yes, Ally, you are right. Its very hard to find your "matching" prosthesist. There are two things mandatory...first he/she has to be "good" ( knowing whats state of the art, having ideas to make out of all his knowledge something we can walk with....and not only the "schoolbook-version").....the other thing is, that it should come to a kind of communikation as friends have, because there are often some very intimate things to discuss.

Here in Germany are many prosthesits.....some are better, some not....so there are people who drive more than 500 km to "their" prosthesist. I have it better....the prosthesist who made my first leg...it was the one who was running around in the hospital...is only 10 km away...so short visits are also possible. Now there are to prosthesists in the shop, who can help me...ok, one has no idea from c-leg, but he builds good sockets :lol:

Btw Ally...the one with no idea from c-leg has been last summer to namibia and built there a bk prosthesis, this summer he will go down there for a wedding party...I bet he will have some stuff to build a prosthesis in his suitcase.

Ciao Thomas

Share this post


Link to post
Share on other sites

I wholeheartedly agree that finding a prosthetist that...

1. You feel you can trust, and

2. Who has the appropriate experience (and I value experience much higher than qualifications, btw) to treat you

...is amazingly frustrating! :angry:

Sadly, Ally, South Africa isn't alone as, as Steve said, we have similar problems over here in the UK. I suppose the only way you can overcome the hurdle is to actually shortlist and 'interview' the prosthetists yourself. As I've been 'in the system' for years, I've found that I automatically tend to subconciously 'interview' anyone that treats me...prosthetists, physios, OT's, orthopods...etc., and if they don't 'come up to scratch', I try and find someone else.

I personally think it's more important to focus upon the prosthetist, rather than the products they can offer. The reason being, is that as a patient, the product (e.g. C-leg) I may have set my heart upon, may not actually be an appropriate choice of treatment for me. For example, I know that what is a suitable treatment choice for your AK (Ally), probably won't be an appropriate treatment for my AK, as (for various reasons) our musculatures are very different.

Just my immediate thoughts...

Lizzie :)

Share this post


Link to post
Share on other sites

Yip, agree with you Lizzie. But again, my gripe is that we can't find a prosthetist to begin with.

3 years ago, if I had my heart set on a c-leg, I wouldn't have known where to begin. The info is just not out there. I agree also, that what an amp might want may be not suitable. I know.....my prosthetist told me that even if he could give me a c-leg for free, he wouldn't.

And that's due to my finances only.

Gotta love that Marco :)

Share this post


Link to post
Share on other sites
Yip, agree with you Lizzie. But again, my gripe is that we can't find a prosthetist to begin with.

3 years ago, if I had my heart set on a c-leg, I wouldn't have known where to begin. The info is just not out there. I agree also, that what an amp might want may be not suitable. I know.....my prosthetist told me that even if he could give me a c-leg for free, he wouldn't.

And that's due to my finances only.

Gotta love that Marco :)

Here in the UK, you either go to your local disablement services centre or you go to a private clinic.

How did you find your prosthetist? Is there a prosthetists professional society who can give you a list of their members...or can you find a prosthetist in the local phone book? :angry:

Lizzie :)

Share this post


Link to post
Share on other sites

Hi Ally

I've had another think about this...

...assuming that new amps have access to a list of prosthetists...and assuming the new amp decides to shortlist and 'interview' a few prosthetists...then, perhaps it would be a good idea to formulate a set of questions that they could ask prospective prosthetists?

So that they would get a good idea about whether a specific prosthetist would be able to give them the service and treatment they want. A bit like the 'top tips for new amps' that was created a few months ago...? :angry:

Lizzie :)

Share this post


Link to post
Share on other sites

That's a really good idea, Lizzie. Because how many of us knew what to ask in the beginning? I sure as heck didn't. I just sat there and took what I got and assumed the prosthetist knew what he was doing. The key here is experience for the amputee as well as the prosthetist.

Share this post


Link to post
Share on other sites

When I was still working in "medical support" fields (1970s, basically), NO-ONE advertised. Anything. Ever. It was all considered "unprofessional" and "unethical." If a prospective patient called the hospital or clinic where I worked and asked outright for qualifications on doctors, I could NOT give them any information. I could list the doctors affiliated with my employer, and I could suggest that they contact the local medical board office to check for complaints, and I could recommend that, once they thought they'd found a doctor they were "interested" in, they make an appointment to "interview" him/her. What an incredible maze they had to run, and how many hurdles they had to clear, just to decide whether it was worth pursuing a professional relationship with a physician!

It's still not common to see "advertising" in the US, but it's far easier to screen a doctor now. My HMO, for example, has online "bios" of their staff available, showing education, years of experience, specialties, etc. An online search will also get you information on past complaints filed. Fees are a "no-no" still (no "Memorial Day Gallbladder Sale: This Weekend Only!" sort of thing), but at least you have some idea of who you're considering.

It seems odd in the extreme to me that prosthetists still adhere to "no advertising," in any country, especially at a time when, universally, patients are being encouraged to "take more responsibility" for their own care. But I know that I would have had a hard time trying to screen and select my own CPO -- especially as a "newbie." I've since learned that there are actually a few of prosthetics shops in my area, and that my HMO has contracts with all of them. I was just "assigned" the one that fit my plan, or came up in their rotation, or was slightly closer to home, or......? And I got VERY lucky and found folks I worked well with, who understood what they were doing.

With ME. To this day, I have not the slightest idea if they have as fine a reputation/results with AKs, or arms, or anything that's not a BK with a stump like mine. My GUESS is that they would take the same level of professionalism and personalization into every job, but I don't have a way of determining that, short of asking them.

There are a couple of things that I think might help this situation. One would be Lizzie's "basic list of questions," so a new amp would at least have some idea of where/how to start their research. The other would be some sort of "registry," a giant, searchable database where a prosthetist's education, experience, continuing training, areas of specialization, etc. could be logged. Then... ADVERTISE THE REGISTRY. Let folks know it's there and how to access it. Make it easy to search and filter, so that if you need to find a prosthetist in a certain area who is trained in the application of certain "bits," you could search on those criteria and get a list of potential candidates... something to use as a starting point. If it's simply a way of cataloging facts, I can't imagine that even the harshest professional board would call it "unprofessional."

Just my two cents' worth..........

Share this post


Link to post
Share on other sites
I have posted this in another forum, apologies for anyone bumping into a duplicate here...

How do you find a prosthetist who will give you what YOU want??

Please bear in mind that this is written from a South African amputee's point of view. It is purely a meanderous musing from where I am at the moment. And probably where I shall stay for a while...

Today is a freezing cold May day in SA. Wrapped up in a blanket, I was paging through one of our popular woman's magazines when I came across a full page advertisement.

A nose job clinic in a state-of-art surgical facility, who have performed nearly 20,000 procedures over the last 30 years. You can book yourself in, have a look at what they offer (here dear, what about THIS nose for you today), and come away with a new and improved face.

Just like that.

You don't need to be referred. You don't need to have a medical reason. It's all very simple.

Now I understand that cosmetic surgery has been around for years and years. I understand that it will probably never go away as long as there are people who are not happy with their God given looks. Nothing wrong with that. Nothing at all. It is your body, you have complete control over it. You have the choice.

Now see, there is the kicker. YOU HAVE THE CHOICE! You can leaf through a magazine and choose the best 'supplier' (if you will) according to how glossy their ads are, and what exactly it is that they specialise in and have on offer.

So barrel back with me...you are an amputee...you have been a good child and done all your research into prosthetics and found what you think you'd like to have, or at least test drive. You have the money/insurance, you are a consenting adult. But how do you find a prosthetist who can actually give you what you want?

Let's talk knees for a moment here. There are loads to choose from. But not all prosthetists are qualified to fit them. A lot of the up-market knees require the CP to go for a course on how to check for a good candidate, and how to set the alignment so it works.

Your designated or chosen prosthetist may very well be clueless when it comes to setting you up with a C-Leg, or a Rheo knee. What then?

Let's talk sockets. There is a huge amount of ongoing training that happens with our CP's to keep up to date with the latest trends and designs. What happens if the new Mexican MAS socket has bowled you over, and it is what you have decided you'd like to try. There is an intensive training course that the CP has to do in order to make a true MAS socket. What if your prosthetist can't make them. What then?

Where do we, the Joe Schmoe Amputee public let our fingers do the walking to find someone who can give us what we want?

I'll tell you where....

Nowhere. No advertising allowed. Sorry for you. Our CP's are bound and gagged by their very own profession's ethical code. I can find you any number of clinics who will chop off your nose or increase your bust. I can find you specialised dentistry clinics who will grind away all your natural teeth and give you fine looking caps. Let's face it - we can find almost anyone in the yellow pages to refine, define, change and rearrange the way we look to the outside world.

How much less important is becoming a mobile and productive person? Surely the disability of an amputee is worth far more than the facial lift of someone who could age gracefully with no tangible consequence on their ability to be useful to their community?

The answer has got to be a resounding YES. My missing leg is more important than someone's prominent nose. And getting somebody like me up and going again is certainly less invasive than trimming off a nasal profile.

Taking 10 year's worth of smile lines off of someone's face is not more important than getting a 17 year old amputee walking, giving them their lives back. It is not more important than fitting an elderly amputee with a decent leg so they can maintain their independance.

And yet we are purposefully kept in the dark. Important information is carefully kept hidden. To what end? To now say "nobody cares" might be construed as flippancy, but I shall maintain that stance until someone can explain this ludicrous reasoning. It is archaic and unforgiveable.

There is a CP I know who placed a small advertisement in a health section of a newspaper, letting amputees know that he was qualified to supply and fit a certain type of power-leg. He was officially reprimanded, a formal complaint lodged against him. Oh puhleeze, give me strength!

So if you are a South African amputee reading this, please remember that you have a CHOICE. And you have the absolute RIGHT to be treated by someone who is qualified in the prosthetics that YOU need.

Not all car mechanics can work on all makes of cars. Prosthetists are the same.

Finding the CP you want? You may as well spit into the wind. It seems that even in the new and improved South Africa, amputees are still having the proverbial finger waved at them.

My two cents...a resounding HERE HERE to freedom of speech and the power of advertising. <_<

I totally agree. The relationship between an amputee and the prosthetists needs to be special. You should have a choice. My amputaition was done on an emergency basis. Fortunately I lucked out and got a fantastic one.

JudyH

Share this post


Link to post
Share on other sites
Hi Ally

I've had another think about this...

...assuming that new amps have access to a list of prosthetists...and assuming the new amp decides to shortlist and 'interview' a few prosthetists...then, perhaps it would be a good idea to formulate a set of questions that they could ask prospective prosthetists?

So that they would get a good idea about whether a specific prosthetist would be able to give them the service and treatment they want. A bit like the 'top tips for new amps' that was created a few months ago...? :blink:

Lizzie :)

I think this is an AWESOME idea.

I found my prosthetist 'by mistake' on the internet one evening. I was surfing the net, and I came upon a site for a young amputee girl. The site was a fundraiser for her limb, and one of the donaters for her leg was my current CP.

I had NEVER explored getting a new leg, because I really believed that all I would do was depress myself because I could never afford anything remotely resembling a decent leg. Got a bee in my bonnet and phoned him just to make sure....asked him about the price of a knee....landed up in tears! Yip, I was right, far too expensive. Especially when he told me my 9 year old socket probably needed replacing too.

He said I should come in and chat to him. No way. What for?

Then he phoned me a week or so later - he had found a used Total Knee. Now, this is really not allowed. CP's cannot give you used components. Ah well, to cut a very long story short, I am completely mobile now thanks to this man that I found by accident on the net.

Cheryl - advertising a giant database is a fabulous idea. However, my guess is that it will take years to get our CP's to buy into that idea. And participate. Hell, most of our CP's don't even have a website.

If I start a thread called "Interviewing a CP", may I publish everyone's suggestions on my website?

:)

Share this post


Link to post
Share on other sites

Hi Ally

I'm not sure if you have already found this site, but you may find it helpful - the South African Orthotists and Prosthetists Association (SAOPA). If you need to find a private prosthetist, I think that apart from personal recommendations, professional societies are probably the next best place to find the contact details of prosthetists.

As far as my suggestion of a list of basic questions is concerned...I would be very happy for you to use my suggestions...I'll think about some questions now... :blink:

Lizzie :)

Share this post


Link to post
Share on other sites

Hey Lizzie - wouldn't it be great if you could click on one of those S'African CP's, and then it would list all that person's qualifications and fields they specialise in? Kind of in line with Cheryl's thinking.... A giant on-line database, with each CP having their own one page web blurb.... Sigh, we wish hey?

I will start a new thread for the questions. If anyone doesn't want me to re-publish them, just make a note and I will leave them out of my website.

:)

Share this post


Link to post
Share on other sites

Geeze, Ally. I can understand your frustration! :huh: I can't understand how such restrictions could help anyone. <_< The O&P that I use actually advertises on the local TV station. And my current leg is made up of used parts from multiple sources. If the US had the same restrictions as South Africa, I would be sitting in a wheel chair now. As a matter of fact, I spoke with the owner of my O&P today after receiving some excellent news.(details in another post) I'll soon be ordering new preprinted numbers and backgrounds for my race bike and I am having all of my O&Ps pertinent info printed on them. These guys have been a true blessing to me and I plan to do everything I can to let the world know.

Share this post


Link to post
Share on other sites

Hi Ally

I've had another think about your 'advertising problem' and I think I have a possible explanation:

The problem you have with prosthetists advertising themselves, probably stems from the reluctance of their professional association to allow its members to advertise themselves. I think it may come from the fact that to belong to a professional body, the members have to have reached a minimum standard of experience and qualification...and so the thinking is that every member is capable of treating the same patients and so no one prosthetist is seen as better than another...which is frustrating when you're the patient who needs to find a private prosthetist. :angry: Prosthetists aren’t alone (well, not here in the UK, anyway), as other professions, including lawyers, are restricted on how they can advertise themselves, sometimes, even down to design of signs they can have on their practice...:angry:

You may be able to change things, if you lobby your country's prosthetist and orthotist association...:huh:

Just a thought...

Lizzie :)

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

×