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Heather Mills - Amputee Forum
paul@plan-a

Cost of the C-Leg in the UK in 2011

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Hi all its been a while since I have written a post.

I have just recieved my quotation for trial and fitting of the old basic Otto Bock C-leg

TDM Socket and C- leg trial £900

Modular Socket £4,100

Otto Bock C-Leg Inc 5 year warrenty £18,500

Trias Foot £820.00

Total Cost £24,320

After 5 years the leg will require a £4,000 service/upgrade that will give the leg a further 2 years of life.

As the NHS do not fund this equipment this is a huge decision for my family. My disability living allowance is £270 a month but cannot be used to dirctly fund the leg.

I would appreciate others comments before I express my own thoughts

Kind regards to you all

Paul :smile:

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Only to say really that, given that we all do pay into the NHS, I think its unfair that you have to fund the cost of this leg yourself and am taking it that you have explored every option, at the highest levels, of getting this leg funded by the NHS. Know its practically impossible, but there are people who have managed to get funding for C Legs, through whatever route, and to me the post code lottery of some people getting some things and others not, is wrong, and wish we had a more equal playing field.

You have probably already weighed up the benefits of having this leg but can understand when you say the huge decision it is for your family, can understand the dilemma, but imagine it has advantages if it enables you to walk easier and get the best out of your life. I'm currently traveling long distances at the moment to get prostheses made which is expensive and does impact quite heavily on the family budget, which weighs quite heavily on me, and whilst it's something I am prepared to do in the short term, at this point in my life, to make me as mobile as possible, won't be able to keep up long term. From what little I know about the C Leg though I understand it impacts less on energy levels etc. and gives a wider range of mobility, so potentially more beneficial long term and perhaps if the NHS thought more holistically then they would automatically provide us with better prostheses, but I will get off my soapbox.

Other things I would be thinking about are, apart from the technology side, you are still going to need good socket comfort .... are you confident that your provider has the skills to provide this, also do they also have the technical skills to set up the C Leg for you, have they done it before and have they been successful with other amps. The other thing of course is you mention 7 (?) possible years lifespan of this leg ... the years fly by so quickly, what happens then and would you be able to afford the outlay again or will you be content to return to a standard NHS provision. I'd also be thinking about the DLA, as you say you can't fund the leg directly with this but currently there is no discrimination on how its spent, though DLA is a bit of an unknown concern at the moment given the reforms and probably not something to be dependent on.

Hope that all goes well.

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As Ann says DLA is being changed to PIP and assessments may mean that you don't have it for long.... who knows?! so I wouldn't depend on that!

I would never in a million years pay £25k of my own money to have a c-leg... I'd pay that for the best socket fit, but the hardware just isn't worth it in my opinion.

I would persue every possible avenue via the NHS route if you really are convinced the c-leg is what you want. What I'd start to do is build a case. You need to prove a need for the c-leg over and above any other knee. You need every clinical paper and trial and how that relates to you and your needs. Think of it like a court case. Make a nuisance of yourself, don't take no for an answer. Lobby your MP etc. etc. It may be worth trying harder towards the end of the financial year, or at the beginning of the financial year, depending on the money left in your trust's pot.... be strong and good luck!

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Many thanks for your thoughtful replies. As you have both pointed out there is no easy fix to this situation. I've been down this road before 9 years ago; it ended up being brought up in Parliament by my MP. I got a nice letter from the health Secretary John Reid (who was in power at the time). Basically he told me to back off, and that he thought I was receiving good prothstetic care. I did debate taking my PCT to court but couldn't take the risk. :rolleyes: I have been liaising with amputees in Holland who looking to raise the cost of prothstetic’s at the European parliament not sure that will make a difference. Maybe the monopoly commission should be involved?

The long and the short of it is if you’ve got money you get to choose, if you haven’t then tough you get what your given. :angry:

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Many thanks for your thoughtful replies. As you have both pointed out there is no easy fix to this situation. I've been down this road before 9 years ago; it ended up being brought up in Parliament by my MP. I got a nice letter from the health Secretary John Reid (who was in power at the time). Basically he told me to back off, and that he thought I was receiving good prothstetic care. I did debate taking my PCT to court but couldn't take the risk. :rolleyes: I have been liaising with amputees in Holland who looking to raise the cost of prothstetic's at the European parliament not sure that will make a difference. Maybe the monopoly commission should be involved?

The long and the short of it is if you've got money you get to choose, if you haven't then tough you get what your given. :angry:

It might be worth looking at alternatives to the c-leg that are less costly, there are other choices these days that may offer similar performance, or who knows?! even better?!

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I'm always on the look out for alternatives and would welcome suggestions. The trouble has always been the swapping over of components. My leg I am wearing today is made by 4 different companys. The NHS are now saying they do not want their sockets used on hardware that is not of their fitting , which I agree they have a good point. However they (NHS) tell you they are skint and you can only continue on your existing limbs?

The cruelness of this industry is that people have to suffer if they cannot pay for quality, which is wrong. Otto Bock have now made thousands of C-legs but the limb is still an enourmous cost. In fact the latest model of the leg will be even more expensive than the existing model. Ossurs Rheo and power knee, Blatchfords Adaptive all lack the reliability that C-legs boast and are all very expensive or not suitable.

I have decided to stay with what I have, perhaps update some of the components. I think it just fair to stick a price tag next to these glossy images shown in magazines at limb centres.

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I don't understand why, even if your present leg is made up of 4 different companies components, why, if made by one centre they shouldn't honour the maintenance of that prosthesis. Though I have come up against centres that won't maintain other centre's prostheses, but I wouldn't have thought it that unusual to have different companies components put in the same prosthesis, but probably depends on whether the centre is in-house or under contract, think some are more particular about it than others.

Like you, I don't understand the cruelness of this industry where people sometimes have to suffer if they cannot pay for quality, though think sometimes 'quality' isn't all about technology. As OBL says, socket fit is the key really, and imagine even the best technology won't necessarily give you a prosthesis you are comfortable wearing if the socket doesn't fit. If you are happy with your socket fit, maybe you are right in staying with what you have at the moment and trying to update some of the components, which you can get out/use on loan for certain periods of time sometimes and then return if you are not happy with them.

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oneblueleg is right, and you need to question why you feel a c-leg is right for you, just because its a £24K computer leg does not mean its the best leg for you, and a good reason why the NHS does not always fund the leg. (why do we always believe higher the price higher the quality, and the more ££££ the better it must be, - maybe its called promotional brain washing!!!) a strong person with a good sound remaining leg in my opinion may make better use of other hydraulic types of units anyway, and one the NHS does fund, take a look at ottobocks new 3R80, its funded by the NHS and one of the best units on the market today. £24K, sorry but anybody who pays £24K out of own pocket, and all the add-on later costs, when the NHS, bless them, will fully fund all their needs has, in my opinion, been well and truely taken in by the hype

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To Paul:

I am a C leg user.......actually a set of these things. Fortunately, I am funded where I live. I have just received a new set of the second generation C leg. I chose these as I only have experience with the first generation and I do not have enough life left in me to start all over with some other kind of kit.

In the past, my first set (generation 1) were constantly out for repair. Between returning them, setting up with a loaner, waiting, and winter here, I lost a lot of time on these units. After much waiting for whatever is to be in the market place, I HAD to settle on the generation 2 C Leg.

So, we (the insurance company and I) bought the new knees with a 5 year warranty. ..............At least they are covered for five years........after that the repair bill went from a constant $4,000.00 to up to $14,000.00 at the end of the life span for the first generation set. Research indicated that the failure rate with second generation was far less.

OK...........so my new set have both been in the shop for air and leakage after a few months of ownership. C Legs DO NOT like to be NOT used!!!! As well, the Otto people here stated to me to expect a life span of five years for a C leg............after that replace them!!

The C Leg unit is a great thing............once they are set up accordingly and once the user masters them..........BUT!!!!.............they are expensive to buy...........VERY expensive to repair............and expensive to replace........................FYI.........

ED

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£24K, sorry but anybody who pays £24K out of own pocket, and all the add-on later costs, when the NHS, bless them, will fully fund all their needs has, in my opinion, been well and truely taken in by the hype

as bot a C-Leg and 3R80 user, I couldn't disagree more. I work in a job that requires me to wear my leg for up to 46 hours, carry heavy objects, climb ladders, push wheeled boxes up ramps, walk through muddy fields, climb scaffolding, stand for long periods, carry things up and down stairs and steep ramps and a lot of other things besides.

When I'm wearing my C-Leg this is no problem at all, I can change my walking speed easily, the leg deals with my changes in weight (caused by carrying an extra 50 Kg) and never has a problem with stairs or ramps or anything. In fact it works so well that I don't even think about it.

Compare that to my 3R80, in order for it to work well on stairs it's not too stable when i'm standing still which means I have to choose between one or the other (the C-Leg stabilises the knee joint when the patient weight is evenly distributed between the front and back of the foot). The 3R80 struggles with ramps to the point that you have to use a hand rail which limits what you can carry (this is not an issue with the C-Leg) When I wear my 3R80 I find myself constantly checking the floor for trip hazards, with the C-Leg I don't even think about it. By the end of a day wearing a 3R80 I'm both mentally and physically exhausted because of the extra things I have to do while wearing it that I just don't even think about when I'm wearing a C-Leg.

Another thing worth mentioning, last year alone I earned more than the cost of two C-Legs doing a job that I simply couldn't do with a 3R80. Quite simply, I have a choice between buying a C-Leg and earning a decent wage or relying a less capable leg and struggling for work. When you look at it like that, the C-Leg starts to seem worth a lot more than it costs. Sure, there are cheaper legs available and if you look at just the components it's hard to justify but if you look at what those components allow you to do the price doesn't seem too bad.

As for the add on later costs you refer to, I've yet to experience these and I'm on my second C-Leg which will need replacement next year. The current generation is sold in the UK with a 5 year service plan which covers any repairs that may be required during this time. What extra costs are you talking about? And what NHS centre ever fully fills their patients needs? If there is such a centre please tell me where it is so that I can transfer there as mine has been struggling for over 6 years to get me a 3R80 and when they gave me that they told me I wasn't to use it for work as it would survive. Please tell me which NHS centre could supply me with a leg that allows me to even do half of my job and can give me the kind of back-up that means it's not a problem if my leg breaks down while I'm working in Australia. Have you ever even been to an NHS limb centre?

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hi grum,

well what can i say!! except the post is about funding a c-leg out of ones own pocket!! and not many people can afford the high cost of buying and maintaining one, and as an extreme user like yourself perhaps the cost could be even more??, i hope you did not feel i was saying the c-leg is not that good and all hype!! i have seen it in opperation, i was just stating the high cost, and more so the continued ongoing cost, is far too high for most, and how we are made to feel we are missing something we all should have.

as far as the 3r80 goes was yours the old one?? as i have seen the new 3r80 perform against the c-leg - as in, ramps, stairs, walking, different walking speeds, stance, stability, sitting, standing, stumble control, rough ground, obsticals, change of direction speed - can't think what else!! and did not see the c-leg out perform the 3r80, except one costs the earth and out of the reach of most but a must have, and one is funded by the NHS - do you see my point now??

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Hi Gaza,

I see your point but sadly the 3R80 isn't funded by all PCT's I had to go through special funding to get mine, a process which took over 6 years and still isn't quite finished. And yes, I did pay for the C-Leg myself.

One thing I don't understand is your comment about the on going cost of a C-Leg. A C-Leg has no on going costs over it's 5 year lifespan, you purchase a service agreement when you purchase the leg and that's it, all the servicing and repairs are covered. You get a loaner leg while yours is in for repair so the only difficulty is two trips to see your prosthetist every two years.

Does it cost a lot? Yes, £100 per week is an incredible amount of money and yes, it should be available on the NHS sadly it isn't but where I live neither is the 3R80, in fact until recently even 18 year olds were being given semi automatic locking knees.

Is the cost worth it? In my case yes, without it I simply wouldn't be able to do my job. Could I negotiate the terrain I encounter at work with a 3R80, sure I could but not while carrying £100K worth of equipment and certainly not with any confidence. The C-Leg gives me the ability to do my job which means I can earn enough money to pay for it. Without the C-Leg I would be unemployed, overweight, depressed and by now probably dead.

The 3R80 I have is the latest one and is simply not a patch on the C-Leg in terms of reliability and predictability.

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sorry grum, i did not make myself clear with the term ongoing costs.

what i ment by ongoing costs it that in most cases a leg is for life and not just 5 years so the cost is ongoing, i have little doubt that when the 5 years are up the c-leg unit will be a little worse for its 5 years and a new purchase would probably be a better option than near future hefty repair costs. one point grum are you saying the service agreement is a £100 a week or the whole package i.e. purchase of the c-leg and the service package equates to £100 per week over the 5 years?

But i am with you on this one grum, if i could afford a c-leg i would have one, i have read the hype (sorry for keep calling it hype) and my life as an amputee feels short changed without one, but for me the choice is do i have a c-leg or do i pay my mortgage, if what you say is true, the one would make me moble in superior fashion and the other keeps me from being homeless. as for the NHS not funding the 3r80, well, and i know the process is fustrating, thats down to demonstrating the need as most PCT will at least consider the 3r80 with Doctor support?

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Thanks for the great reply's people. I have decided not to trial the C-leg. This is purely an economic decision. I am not prepared for my family to go with out for my benefit. I have changed my car which we all benefit from. I spoke at length with my prothsetist before coming to this decision. My wife would have supported me in buy the C-leg, but it would have been on my conscious.

I live a very full life as it is, I play golf twice a week and work full time, I'm afraid £25k for me is just not affordable.

HAGWE

Paul

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The cost of the whole package equates to £100 per week. I know it is expensive and I understand that not everybody can afford it. I also know that not everybody is going to get the best out of a C-Leg and if that's the case then you're better off not spending the money. Personally, I don't have kids and never will so the only people I have to worry about are my wife and myself. I use my DLA to fund my C-Leg but that means spending both the mobility and care components on it, I feel that is reasonable as without the C-Leg I'd be needing a lot more assistance with everything. and besides, the other options are Motability (which doesn't suit the high mileage I drive) or spending it as and when such as groceries etc.

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The cost of the whole package equates to £100 per week. I know it is expensive and I understand that not everybody can afford it. I also know that not everybody is going to get the best out of a C-Leg and if that's the case then you're better off not spending the money. Personally, I don't have kids and never will so the only people I have to worry about are my wife and myself. I use my DLA to fund my C-Leg but that means spending both the mobility and care components on it, I feel that is reasonable as without the C-Leg I'd be needing a lot more assistance with everything. and besides, the other options are Motability (which doesn't suit the high mileage I drive) or spending it as and when such as groceries etc.

"I work in a job that requires me to wear my leg for up to 46 hours, carry heavy objects, climb ladders, push wheeled boxes up ramps, walk through muddy fields, climb scaffolding, stand for long periods, carry things up and down stairs and steep ramps and a lot of other things besides...." and you get DLA?!?!?!?!? wow! I'm stunned....

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"I work in a job that requires me to wear my leg for up to 46 hours, carry heavy objects, climb ladders, push wheeled boxes up ramps, walk through muddy fields, climb scaffolding, stand for long periods, carry things up and down stairs and steep ramps and a lot of other things besides...." and you get DLA?!?!?!?!? wow! I'm stunned....

I get the DLA because without the C-Leg I wouldn't be able to do those things! I use the DLA to pay for the mobility aids I require to live a normal (or as close to normal as possible) life. Isn't this what DLA is for?

I've been thoroughly assessed for DLA more than once and it's always been approved because the assessment doesn't take in to account walking aids or aids that the DLA itself provides. How far can I walk without a walking aid? Half a step then I fall over. If the NHS was able to provide me with a prosthesis of any kind let alone one that meets my needs then maybe I wouldn't need the DLA but since 2004 they haven't been able to do this so I feel perfectly justified claiming DLA in order to finance a C-Leg.

I also do a lot of things that every medical professional I speak to tells me I shouldn't be doing but I'm not prepared to sit in a wheelchair in a corner and wait to die like a lot of amps I see.

It's also worth pointing out that I don't do all of those things at the same time, the 46 hour stints are usually when I'm flying long haul so although I'm wearing my leg I'm not really using it that much. I stand because it's more comfortable than sitting, the uneven terrain is just a fact of life as is carrying things (unless you're the type of person who is happy to sit and watch others do all the work while you get paid to sit on your ass).

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"I work in a job that requires me to wear my leg for up to 46 hours, carry heavy objects, climb ladders, push wheeled boxes up ramps, walk through muddy fields, climb scaffolding, stand for long periods, carry things up and down stairs and steep ramps and a lot of other things besides...." and you get DLA?!?!?!?!? wow! I'm stunned....

I get the DLA because without the C-Leg I wouldn't be able to do those things! I use the DLA to pay for the mobility aids I require to live a normal (or as close to normal as possible) life. Isn't this what DLA is for?

I've been thoroughly assessed for DLA more than once and it's always been approved because the assessment doesn't take in to account walking aids or aids that the DLA itself provides. How far can I walk without a walking aid? Half a step then I fall over. If the NHS was able to provide me with a prosthesis of any kind let alone one that meets my needs then maybe I wouldn't need the DLA but since 2004 they haven't been able to do this so I feel perfectly justified claiming DLA in order to finance a C-Leg.

I also do a lot of things that every medical professional I speak to tells me I shouldn't be doing but I'm not prepared to sit in a wheelchair in a corner and wait to die like a lot of amps I see.

It's also worth pointing out that I don't do all of those things at the same time, the 46 hour stints are usually when I'm flying long haul so although I'm wearing my leg I'm not really using it that much. I stand because it's more comfortable than sitting, the uneven terrain is just a fact of life as is carrying things (unless you're the type of person who is happy to sit and watch others do all the work while you get paid to sit on your ass).

DLA is an allowance given to assist with the extra expense involved in living with a disability so suppose financing a C-Leg would fit in to that criteria, and probably similar to what everyone else does, like using it to finance a car, etc. etc. the worry is though that under the knew PIP (which is replacing DLA) they are taking what adaptations, prostheses, wheelchairs etc. we might use to allow us to do certain activities into account and are changing the goalposts, so quite a worry for the future.

Your comment about the NHS though, and its inability to provide a prosthesis, is really worrying, and your not alone in that, many of us are having difficulties getting protheses made and sometimes just getting appointments, and follow up appointments for fittings, and I don't understand why now we have to wait so long, and why the wait is so acceptable. The NHS service in some parts of the country at the moment is really bad, and if your local centre doesn't have the skills to help you, you just get left, like you say in a wheelchair, instead of being referred to a more specialist centre where they might be able to make you more mobile. I think its quite criminal and inhumane actually. I am sure if you had some other medical condition, whereby you needed treatment to allow you to walk or whatever, you would be referred on somewhere but this doesn't seem to happen with prosthetics, where it seems to be acceptable that we can be left not walking for however long because we are amputees, but seems to miss the point that being mobile and active is just as important to our health and everyday life as it is to the rest of the population.

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the worry is though that under the knew PIP (which is replacing DLA) they are taking what adaptations, prostheses, wheelchairs etc. we might use to allow us to do certain activities into account and are changing the goalposts, so quite a worry for the future.

I wouldn't worry too much, you might initially lose the benefit but on appeal it'll soon be reinstated. How can they assess your mobility using a device which you then won't have because they've taken away the funding which provides it?

They can't say that you get along perfectly fine when you use crutches so we're going to take them away from you.

They might say that I don't qualify for assistance with care needs as, when I'm using my C-Leg, I am able to look after myself this would be completely reasonable provided the PIP was sufficient to cover the cost of the C-Leg.

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the worry is though that under the knew PIP (which is replacing DLA) they are taking what adaptations, prostheses, wheelchairs etc. we might use to allow us to do certain activities into account and are changing the goalposts, so quite a worry for the future.

I wouldn't worry too much, you might initially lose the benefit but on appeal it'll soon be reinstated. How can they assess your mobility using a device which you then won't have because they've taken away the funding which provides it?

They can't say that you get along perfectly fine when you use crutches so we're going to take them away from you.

They might say that I don't qualify for assistance with care needs as, when I'm using my C-Leg, I am able to look after myself this would be completely reasonable provided the PIP was sufficient to cover the cost of the C-Leg.

Its only my interpretation of what I've read, but from my understanding it will be them asking you to present and be assessed wearing your current prosthesis, and if you can walk a certain distance in that, that is the criteria, same with any other adaptation or aid, such as wheelchair crutches or the like ... it seems they will not be taking into account how anything was funded,or maybe realising that we sometimes might be unable to wear said prosthesis.

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In which case, I keep my C-Leg until it dies then I lose my job, become unable to afford the car I need to get away from the house I can no longer get in to or out of because it isn't wheelchair friendly and then I re apply and get the benefit because my situation has changed, of course that's assuming I've managed to get a wheelchair given that it's a 12 month wait for one in my local PCT

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In which case, I keep my C-Leg until it dies then I lose my job, become unable to afford the car I need to get away from the house I can no longer get in to or out of because it isn't wheelchair friendly and then I re apply and get the benefit because my situation has changed, of course that's assuming I've managed to get a wheelchair given that it's a 12 month wait for one in my local PCT

LOL probably about right Grum

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I couldn't agree more that people should be encouraged to get out and about and look after themselves, that's not up for debate.

However, the DLA is not for funding of an artificial limb. It's as simple as that. The way the government fund limbs is entirely separate from DLA.

Whether you or I disagree with that is not relevant, it just isn't for that, it's to fund asssitance required to live on a daily basis.

The following is from the government website, it explains the criteria for the mobility component:

<H3>If you have mobility needs

To get the mobility component of Disability Living Allowance, your disability must be severe enough for you to have any of the following walking difficulties, even when wearing or using an aid or equipment you normally use:

  • because of a physical disability, you are unable or virtually unable to walk without severe discomfort, or at risk of endangering your life or causing deterioration in your health by making the effort to walk
  • you have no feet or legs
  • you are assessed to be both 100 per cent disabled because of loss of eyesight and not less than 80 per cent disabled because of deafness and you need someone with you when you are out of doors
  • you are severely mentally impaired with severe behavioural problems and qualify for the highest rate of care component
  • you need guidance or supervision most of the time from another person when walking out of doors in unfamiliar places

</H3>

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I received a c-leg in May 2010 and it cost $47,000. The prosthetist had quoted a cost of $63,000 but the insurance company said they would only pay the lower amount. That is what was paid. Expensive leg at either price.

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