Jump to content
Heather Mills - Amputee Forum
Sign in to follow this  
SUESMAN

Hi Everyone - New here and dying to ask

Recommended Posts

Hi All

Literally just been accepted as a member of the forum so can now get on with introducing myself and addressing the main reason for my membership. I appologise for the fact that what I have to ask is pitched more to British members.

I'm not an amputee, but my partner of 8 months (Sue) is a RAK and has been for the past 5 years. In that time she has been supplied/issued 3 prostheses by the NHS. I've only seen the most recent of these and whilst I'm no expert I am bound to say that ABOMINATION is not a strong enough word.

The socket is a full 6 inches larger in circumference than her stump, so it doesn't just 'not fit', she can almost spin in it. Even though - in an effort to reduce the size - she's had the foam covering from the knee up removed, the socket/thigh is so much larger than her remaining leg that it makes her look deformed. Suspension is via a lanyard (of dubious reliability), attached to a silicone sock. The knee is locked unless released via a toggle affair at the thigh. And finally, the foot is one shoe size larger than her remaining one.

If all this weren't enough, according to Sue, THIS is the best of the bunch. The first 2 legs - by Sue's description - not only featured most of the above but were retained by a wide waist band/belt and wouldn't have looked out of place 20 or even 30 years ago. They were both poor fits, but the first was so bad that it caused a blister at the end of her stump, which turned sceptic and ended up requiring remedial surgery to rectify.

Needless to say, prior to my arrival Sue was totally disillusioned, had consigned the current offering to the wardrobe and resigned herself to spending the rest of her life in a wheelchair or at best on crutches - though a couple of nasty falls have dented her confidence on those also.

Hopefully, things are about to change. We've obtained a quote from a private provider and are currently putting together a case for funding from Sue's PCT. We have letters of support from Sue's Diabetic Consultant, her Vascular Consultant (who performed the amputation) and her MP. All we are awaiting now is a letter from her GP, which he agreed to do at a meeting 3 days ago.

Sue wants, deserves and needs to walk again. Needless to say I want to do everything in my power to ensure - as far as is possible - a positive outcome of this funding application.

So, my questions are as follows:

1) Has anyone out there been through this process - successful or otherwise - if so what advise can you give.

2) Coming from a sales background I had thought of putting together a bound, sales type presentation including

personal background, medical/prosthetics history, the private providers quote and the letters from Sue's GP, 2

consultants and MP. Would this be of benefit or counterproductive i.e. overkill?

I await any help, guidance or other information anyone can give.

Regards

SUESMAN (Dave)

Share this post


Link to post
Share on other sites

suesman,

First of all welcome to the group.. :smile: ...second that really stinks... :sad: It happens in the US also. Tell her she will definately have to complain until she gets a leg that fits. I,{ like her }was too timid about letting the prosthetist know that I wasn't satisfied; plus I am sure they can tell the leg does not fit.

I am sure there are several on here that will tell you the correct way in taking on the health system. Speak up ladies & gents.

Share this post


Link to post
Share on other sites

I've not heard of this before, but it sounds like you are doing exactly the right things to make something happen. She's lucky to have you, good luck and please keep us up to date and let us know if she gets the funding and if it turns out to be a successful route to walking again.

Good luck to you both.

Share this post


Link to post
Share on other sites

Hi All

Thanks eag and oneblueleg for your kind thoughts and words of support. I hope you won't think me a 'cheapskate' for not replying to each of you individually.

Sue's doctor rang yesterday to clarify a couple of points and tell us that his referral would be going in the post that evening. He then went on to give us a quick overview of what he'd written and said that a copy would be waiting for us at reception. Boy is he ever 'onside' now, what a difference to the response we got from his partner on the subject around 3 weeks ago. Just goes to show what a bit of desk thumping and finger wagging can do.

Anyway, when I thanked him for all his help he said "Not at all, I'm sure that the amount Susan is asking for is far less than has been wasted already on 3 unsatisfactory legs.

I understand from a poster to another board I belong to that a decision can come in as little as two weeks depending on how frequently The Exceptional Treatment Panel of any given PCT meets.

So keep your fingers crossed for us, with luck Sue could have her leg and be taking her first steps for Christmas. Now wouldn't that be one helluva gift from Santa?

Keep smiling

SUESMAN (Dave)

Share this post


Link to post
Share on other sites

Hi Dave.....and Sue.

I have been through the process of PCT funding and found it extreamly easy! May have had something to do with my horrendous prosthetic history and other health issues.

I arranged a prosthetic report from a private company, gave a copy to my GP along with a full 5 year prosthetic history , including five revision surgeries and asked him to refer me to the exceptional cases panel of the PCT. I have to say that my case was exceptional. I heard withing four weeks that I had the funding.

I am in the process of having a socket made, its taken a few attempts but we are getting there. The worst thing for me is the travel and expense incurred in the fitting process as the company is on the other side of the country.

I know that I will end up with a wearable socket.

I cannot for the life of me understand why my local limb centre seems incapable of fitting me, it really should not be the case in this day and age.

I wish you well and keep us informed.

Share this post


Link to post
Share on other sites

Hi Lynne

Thanks for your post and info given. I think there can only be one reason why many British amputees are so badly served by NHS Limb Centres, MONEY - or rather lack of it.

I can only speak from information harvested from the net and taking Sue to our chosen private provider - a highly respected and recommended company - when I say that prosthetics technology is moving at such a pace (for which also read expensive), that the NHS can't keep up.

The leg that we've been quoted for Sue is almost £17,000 and is by no means 'Top of The Range' when you consider that one can pay up to £30k+ for a state of the art, computerised limb. And before anyone pipes up with the 'What price freedom and mobility' argument, let me say that you're preaching to the converted. But that doesn't mean I'm not allowed to think that prosthetics are overpriced.

Of course this neither explains nor excuses why limb centres can't get a good socket fit. I can only put that down to one or more of the following: Care, expertise, equipment (again money led), or time. Plus I think that you need to be the type of individual who is prepared to jump up and down, shout, scream, thump desks and wag fingers - which of course not everyone is - if you don't wan't to be fobbed off with the cheapest prescription limb available.

Well, that's my two penneth (for now anyway). For the moment Sue and I are keeping our fingers, toes and everything else crossed that her PCT is one of the wealthier ones in this Post Code Lottery driven era.

Will keep you all posted.

Regards

SUESMAN (Dave)

Share this post


Link to post
Share on other sites
The leg that we've been quoted for Sue is almost £17,000 and is by no means 'Top of The Range' when you consider that one can pay up to £30k+ for a state of the art, computerised limb.

This expense is mostly down to the fitting costs, the casting, fitting and immediate support required by the private Prosthetist's services. The hardware is a relatively small part of this in most cases.

Share this post


Link to post
Share on other sites

Okay, I'm no expert on the NHS and you Brits' funding issues... but if Sue does get her funding, one thing to remember is that it can help if she is an active partner in the socket-fitting process. I learned that one through personal experience.

My first three sockets were varying degrees of "good" and kept getting better as I went through stump shrinkage and re-casting. Socket #3 was a truly amazing fit, and I was thrilled with it for as long as I was able to wear it. Eventually, though, I shrank out of Socket #3 and preparations began for Socket #4.

Socket #4 came at a bad time in my life. I was generally ill and depressed, and my own U.S. insurance was challenging the request for yet another socket, believing that I couldn't possibly be shrinking that much or that rapidly. By the time the new socket was authorized, I was so very, very "down" that I had no energy to devote to the fitting process. I basically just sat there like a bump on a log and told my leg guys, "you're the experts; you make it fit."

They honestly did their best...but with absolutely NO feedback from me, it was a battle. Eventually, they asked me, "how is it fitting now?" and I replied, "O.K." And I walked out of the clinic. The leg was not really "O.K." but it was fitting somewhat better than Socket #3 had been at the end, and that was about all I had the patience for. For the next six or eight months, I wore Socket #4...and I'd eventually get upset about something in its fit and go in and complain ONLY ABOUT THAT ISSUE. They'd fix that issue, and I'd gimp off again to put up with all the rest of the problems in the socket. It's amazing what depression can do to you.

By the time I'd shrunk out of Socket #4, it had been revised so many times that it looked "trashy." It felt even "trashier." My prosthetist kept encouraging me to apply to my insurance for a new casting...my measurements definitely warranted a new casting...and still I kept stalling. Finally, my leg guys sat me down and asked "What's going on with you, anyway? This just doesn't seem like you at all." "I guess I'm just depressed," I replied, and that seemed to break the dam.

I applied for a new casting and socket...my prosthetist put in a request for an upgraded foot (he'd been making that request for a while), and both were approved.

I went into the construction of Socket #5 determined to give my "experts" enough feedback to allow them to do their job. They rose to the occasion. We actually made two legs at this time...a new walking leg and a water leg. It took seemingly forever! The result, though, was well worth all the time and effort...I have two lovely legs that truly FIT! When we reached the end of this journey, and I said, "I bet you guys are going to be glad to be rid of me for a while," they both protested. "It's just been good to have you back and involved," they said.

As you're already learning, involvement can make a big difference. If you get the chance for a new fitting, make sure that everyone is speaking up...it's a chance you don't want to waste!

Share this post


Link to post
Share on other sites
This expense is mostly down to the fitting costs, the casting, fitting and immediate support required by the private Prosthetist's services. The hardware is a relatively small part of this in most cases.

Hi Oneblueleg

Prosthetics and, more precisely, the pursuance of getting Sue up and mobile have seemingly occupied my every waking (and some sleeping) hour since we first met 8 months ago. So when I say I am fully aware of where the costs come from it is in no way intended to decry or devalue your very valid comments.

Frankly, I could write reams on my thoughts on the subject and why I made the comment about feeling prosthetics are overpriced. But that would take this thread off topic, something I don’t want to do – though it’s food for thought as a possible topic for a new thread.

I am by nature the eternal Devil’s Advocate, always tending to view – sometimes to my detriment – any argument or discussion from all viewpoints. The problem with this subject is that it’s just too emotive, chiefly for the amputee but also for their partner and immediate family. Trying to quantify an intangible that really has no comparisons to be measured against is all but impossible which is why the old chestnut: What price mobility and freedom? Invariably gets rolled out. But if one can divorce ones self emotionally the thought process becomes both challenging and very interesting.

Suffice to say I will move heaven and earth to get Sue her leg, that’s the emotive part of me speaking. The logical part of me though is bound to ask: Are prosthetics providers playing upon the “What price” argument? I feel that could provide a lively debate.

SUESMAN (Dave) – Eternal Devil’s Advocate and cynic :biggrin:

Share this post


Link to post
Share on other sites

That debate has been had many times, and in the States, they drive big flash cars... in fact I think the private practice Prosthetists do here too, so I think the practitioners do rather well.

However, my point is meant quite quite specifically, I would be interested to know roughly why you would think Prosthetic hardware was overpriced because I quite strongly believe that it isn't in the most part.

Share this post


Link to post
Share on other sites

Hi Cherylm

Thanks for your suggestions and advice. After 5 years in a wheelchair waiting for a leg that fits the criteria of comfortable, functional and aesthetically acceptable, I feel the only problems we will have at the fitting sessions will be how to stop Sue talking and where to get the tissues for her tears.

Flippancy aside, you have made a valid point and though I don’t feel I’ll need to, I will stress to Sue the need to really interact with the prosthetist.

Congratulations on sticking with it and getting the leg(s) you deserve.

Regards

SUESMAN (Dave)

Share this post


Link to post
Share on other sites

Oneblueleg

That reply was quick. I would be happy to discuss the thought process behind my comments re prosthetics costs, but as already stated I don't think this thread is the place to do it. You supply the electronic venue and I will happily join you.

However, before going down that road I will say that having re-read both our various posts, we appear to be addressing different aspects of the same topic. You are talking componentry, which I interprit as parts made elsewhere, shipped in ready to use. These I tend to agree, whilst not cheap, aren't extortionately priced given that we're not talking mass market here and resultant economy of scale.

I, on the other hand, am talking about the finished product, which in the case of Sue's leg is more than 4 times the cost of those components. Ok, there's a pyhsio element, but that represents around 3% of the total, hardly worth mentioning. The bulk of the difference is made up of socket and cosmesis and the cost of these (I suspect) is largely down to the expertise required to create them rather than the raw materials. Expertise or knowledge and skill are all intangible, so we've come full circle and simply changed the question slightly to 'What price knowledge and skill'?

Believe me, I don't begrudge anyone making money. I don't look at someone driving a flash car and think "what did you do to deserve that"? Because clearly they did something different or better to me, and provided they didn't hurt anyone along the way good luck to them.

I suppose what I'm highlighting here is that for all my research into prosthetics for Sue I am still fundementaly a layman. As such I'm having real problems coming to terms with a prosthetic leg costing the same as a good, mid range family saloon car - and you get a 3 year warranty with one of those. I know I shouldn't make such comparisons, but can't help myself.

As to prosthetists, they supply a valuable (or maybe I should say invaluable) service - though the cynic in me adds, if you can afford it.

Sorry to have discussed this here after I said we shouldn't, just found myself unable to stop. Oneblueleg, if you want to chat further on this subject then let's find another venue. Unless of course readers would like to open this up as a new topic?

Cheers

SUESMAN (Dave)

Share this post


Link to post
Share on other sites

No need Dave, you've explained, I understand and agree...

Never apologise for discussing anything anywhere... even though topics sometimes go off post, they ususally do it for a reason, if anyone's bothered they will say...

Share this post


Link to post
Share on other sites

Hi All

Just to keep you up to speed.

The application for funding for Sue's leg goes before her PCT's Exceptional Treatment Panel on Tuesday next week (22 September 2009). In addition to a very well worded referral from her GP there are strong letters of support from her Vascular Consultant, Diabetic Consultant and MP.

If that little lot between them don't push the right buttons I don't know what will.

Wish us luck.

SUESMAN (Dave)

Share this post


Link to post
Share on other sites

Suesman - Congratulations!!! That is great news! When you were talking earlier about the cost - while on a conference call between myself, my leg guy and the general manager of Ohio WillowWood and their Limb Logic Vacuum legs, I was attempting to see if they could do something so that we could make the vacuum legs work for me. My insurance company had cut a check to my leg guy for $34,000 for the vacuum legs. They did not and have never worked for me and are still at the leg guys office. I was asking only for them to make the liners a bit different so I could use the system, Ohio WillowWood refused and would not budge, and when I brought up the fact that my insurance had paid out that kind of money for me and I was not able to use them, the general manager got very indignant and said that they only charged a little over $3,000 for their part and the rest went to my leg man. Wow, you should have seen how fast my leg guy changed the subject. I have had to go back to a pin system and still do not have a correct fit. I meet with him again this week. These people are making a boat load of money. Beside the sockets, just think how much they make off of socks and liners for heavens sakes...just wanted to throw in my 2 cents and tell you good luck and I agree...as long as you have someone who is able to make a decent fitting leg, you have to put as much input into it as you can. Good luck....

Share this post


Link to post
Share on other sites

Hi All

The verdict re funding a prosthesis for Sue is in and I’m afraid it’s a NO. They want her to attend Cardiff, the hub/chief limb centre for her area. Needless to say Sue is devastated. Understandably she has zero faith in NHS prosthetics centres and the prospect of committing to a 200+ mile round trip each visit for ‘more of the same’ isn’t exactly appealing.

For my part I’m somewhere between seething and totally bemused as I can’t help but feel that there’s more than a little ‘public Vs private sector rivalry’ involved in this decision. They don’t want to admit defeat, or that a better service and product are available in the private sector. So they will happily subject their patient to more anguish in order to save face and money – though the latter is arguable.

Well Cardiff, watch out! You’re just about to encounter your most demanding customer – ME! I will want to see evidence of the best they can produce and if Sue is happy with it then God help them if they try to palm her off with anything less. If, however, she feels that their best is still sub-standard then all hell will break loose.

So people, the question is: “DOES ANYONE HAVE ANY EXPERIENCE OF CARDIFF LIMB CENTRE”? Forearmed is forewarned – as the saying goes.

Thanks in anticipation of your replies.

SUESMAN (Dave) :angry:

Share this post


Link to post
Share on other sites

Dave, you heard quickly, what reason did they give for the refusal? You can appeal but it is unlikely you will be sucessful.

Think there is someone on here who lives in Wales, don't know if they attend Cardiff DSC though. May be they will pop in sometime soon.

May be a good idea to go there with an open mind, all guns blazing does not always get the desired effect, sometimes people shoot back :unsure:

I can understand your anger but feel that you or rather Sue, needs to try and build up a good relationship with her prosthetist, it may take a while but things can be resolved. You must remember, the 'best' components are not always right for everyone. The socket fit is the most important thing.

If I had a good socket fit I could happily walk on a broom handle!

SUE, would be good if you could come here in person and speak from your point of view.

Share this post


Link to post
Share on other sites

Lynne

I don't know the reason(s) for the refusal at the moment, they will be detailed in a letter to Sue's GP.

I'm always prepared to give anyone the benefit of the doubt and recall posting on this board that I am 'the eternal devil's advocate'. But when I hear the horror stories that Sue has about her treatment to date and see with my own eyes the evidence - her current leg (and I use the term loosely) - I am hard pressed not to be angered. Frankly, at the moment my biggest problem is persuading her to set foot inside another NHS limb centre.

In the past Sue was on her own, and they walked all over her. Now she has me, and I have no intention of going in 'All guns blazing', but neither will I let them fob her off.

What Sue - and any other amputee for that matter - wants and deserves is a comfortable (socket fit), functional (componentry, preferably not out of the arc) and aesthetically acceptable (not something that Ahab would frown at) limb. That's what we requested of the private provider - not some all singing, dancing, don't spare the bells & whistles, computerised limb - and that's what they quoted for. I see no reason why the NHS shouldn't be able to supply something comparable. Hence my comment about wanting to see what they are capable of. If they have the equipment, funding, expertise and compassion to produce a limb with a modern socket, current componentry and good cosmesis then fine. If not, then just like going into a tractor dealership to buy a car it would be an academic excercise. Both have 4 wheels on the road and 1 in your hands, but that's where the similarity ends.

Anyway, as usual, time will tell. It could be argued that Sue's waited for 5 years to get to this point so what's a little longer? I just hope this refusal won't drive her over the edge to the point of totally giving up.

SUESMAN (Dave)

Share this post


Link to post
Share on other sites

Hello Dave & Sue,

I can’t comment about sue not getting the funding simply because I don’t know enough about how it all works and the criteria ECT ECT

However I do want to share a couple of experiences that I have had with various people that have had limbs made both private and by the NHS.

Myself when I lost my leg, I made an appointment to be seen private even before the stitches where even taken out, it was well worth it and gave me good background knowledge

I was given an approximate price and some lovely glossy leaflets on what knees feet ECT where available and an approximate price.

The whole experience was very reassuring and very professional and did a lot to reassure me, (something the NHS hadn’t done at that time).

However as it was very early days I decided to put the time to good use, I pestered my doc to arrange a visit to my limb centre (Freeman at Newcastle)

Once there I was given lots of very useful info and again felt reassured with the exception of what “set up “ I would be getting , all I would get of them was wait and see and every body is different in what is right for them might not be right for you. (How I hated that saying).

I decided to go the NHS route at least until my stump settled down just to see how it all worked out (not to mention the £££ I would be saving).

My progress to date I have got 3 legs , one a micro knee , one kx06 knee and one swim leg they have all been made very quickly but more importantly the socket has fitted just fine,

I remember the first socket, when asked how did it feel I remember saying how on earth would I know I never had anything like this before, however after walking/hobbling around for 5 mins it started to rub, this is when I learnt a very very important lesson I worked with my leg guy to get round it as he stated if I don’t give him the right feed back he cant do anything about it. I walked, I got rubbing, I told him, and after many trips back to the workshop he fixed it. Success (all in one day)

Since then it’s a constant stream of info going backwards and forwards between my leg guy and me always ending up in a successful conclusion. I work on the principle if its not right at the limb centre I certainly wont be right at home, so I simply stay there till its right, I have seen in the past to many people complaining about how it doesn’t feel right then simply going home only to ring in another day day to make a appointment to get the same problem fixed again. I may be a bit pig headed about it but I do believe that my leg guy wants to see me walking out of the limb centre and takes a great deal of pride in his achievements.

I often talk to a another man who has a private limb made and asked him about the difference , he told me at the time it was the best thing he had ever done , but since then he got a different leg guy and now his new Nhs limb was better than his private one . Work that one out,

I must admit that I am dreading the day my leg guy retires and I will get a total stranger to start over with, I believe that good honest two way communications between you and the leg guy is the most important thing about getting a good fitting.

Now after saying all that I do believe that making a well fitting socket is a bit of an art form not just as a result of a good casting.

And I do know for some people they never get a good fit despite loads of castings, and then they got a change of leg guy and bingo success first time why I don’t know.

Sorry I’m rambling on a bit I guess what I trying to say is despite what you have heard/ seen about the NHS they do a marvellously good job for a lot of us

So why don’t you (sue) look upon this as a new optunity and go in positively rather than dreading it just because it the NHS.

And one last small point that I would like to make is that the leg guy you see at the private clinic could well be the same guy you meet at the NHS limb centre.

Take care ……………………….Mick

Share this post


Link to post
Share on other sites
Hello Dave & Sue,

I can't comment about sue not getting the funding simply because I don't know enough about how it all works and the criteria ECT ECT

However I do want to share a couple of experiences that I have had with various people that have had limbs made both private and by the NHS.

Myself when I lost my leg, I made an appointment to be seen private even before the stitches where even taken out, it was well worth it and gave me good background knowledge

I was given an approximate price and some lovely glossy leaflets on what knees feet ECT where available and an approximate price.

The whole experience was very reassuring and very professional and did a lot to reassure me, (something the NHS hadn't done at that time).

However as it was very early days I decided to put the time to good use, I pestered my doc to arrange a visit to my limb centre (Freeman at Newcastle)

Once there I was given lots of very useful info and again felt reassured with the exception of what "set up " I would be getting , all I would get of them was wait and see and every body is different in what is right for them might not be right for you. (How I hated that saying).

I decided to go the NHS route at least until my stump settled down just to see how it all worked out (not to mention the £££ I would be saving).

My progress to date I have got 3 legs , one a micro knee , one kx06 knee and one swim leg they have all been made very quickly but more importantly the socket has fitted just fine,

I remember the first socket, when asked how did it feel I remember saying how on earth would I know I never had anything like this before, however after walking/hobbling around for 5 mins it started to rub, this is when I learnt a very very important lesson I worked with my leg guy to get round it as he stated if I don't give him the right feed back he cant do anything about it. I walked, I got rubbing, I told him, and after many trips back to the workshop he fixed it. Success (all in one day)

Since then it's a constant stream of info going backwards and forwards between my leg guy and me always ending up in a successful conclusion. I work on the principle if its not right at the limb centre I certainly wont be right at home, so I simply stay there till its right, I have seen in the past to many people complaining about how it doesn't feel right then simply going home only to ring in another day day to make a appointment to get the same problem fixed again. I may be a bit pig headed about it but I do believe that my leg guy wants to see me walking out of the limb centre and takes a great deal of pride in his achievements.

I often talk to a another man who has a private limb made and asked him about the difference , he told me at the time it was the best thing he had ever done , but since then he got a different leg guy and now his new Nhs limb was better than his private one . Work that one out,

I must admit that I am dreading the day my leg guy retires and I will get a total stranger to start over with, I believe that good honest two way communications between you and the leg guy is the most important thing about getting a good fitting.

Now after saying all that I do believe that making a well fitting socket is a bit of an art form not just as a result of a good casting.

And I do know for some people they never get a good fit despite loads of castings, and then they got a change of leg guy and bingo success first time why I don't know.

Sorry I'm rambling on a bit I guess what I trying to say is despite what you have heard/ seen about the NHS they do a marvellously good job for a lot of us

So why don't you (sue) look upon this as a new optunity and go in positively rather than dreading it just because it the NHS.

And one last small point that I would like to make is that the leg guy you see at the private clinic could well be the same guy you meet at the NHS limb centre.

Take care ……………………….Mick

Couldn't have put it better myself, all good valid stuff.... especially:

"...making a well fitting socket is a bit of an art form",

"...the leg guy you see at the private clinic could well be the same guy you meet at the NHS limb centre" and

"...good honest two way communications between you and the leg guy is the most important thing..."

Share this post


Link to post
Share on other sites

Hi Dave and Sue

Can appreciate that this is a disappointment to you, but if Sue has not been to this particular NHS centre before, it may be worth her while giving it a go. Not all NHS centres are the same. If this is a larger centre she may have access to a rehab consultant (something she wouldn't get a private centre) and maybe the combined experience of a number of prosthetists who between them may be able to come up with the solution to the problems she has encountered before. If it doesn't work out, its only her time that she is wasting and then maybe you can push forward on the appeals route.

I agree with what Mick and some of the others have said about working with your prosthetist etc. etc. Socket fit is paramount, and, in my opinion takes priority over the all singing and dancing components etc. If Sue is not feeling confident, I would suggest she writes everything down on paper before the appointment, what she needs, what isn't working, what has gone round before, expectations etc. etc. take it in with her, have it in front of her and discuss it with the Consultant and Prosthetist during the appointment, she really needs to get the most out of this first appointment, everything stems from there.

Ann

Share this post


Link to post
Share on other sites

Hi Dave

I'm really sorry to hear about your partner, Sue's, experiences.

I acknowledge your frustration, but I also agree with everything Mick and everyone else has said about working with your prosthetist and getting that socket fit right. I'd also add that the limb they give your partner should reflect how active they are and that sometimes, if there are problems with circulation ...etc., residual limbs swell up quite a bit and there can be big volume changes throughout the day.

For various reasons, I've had a couple of queries from Wales recently, so I've sent you a PM - hope you get it?

Oh, and by the way, legs 20 or 30 years ago really weren't that bad you know?! At least they seemed to fit a bit better. :smile:

Share this post


Link to post
Share on other sites

Mick, oneblueleg, flip, ann and Lizzie2

Thanks for all your recent posts. Lizzie, I've got your PM thanks and have replied to it.

Sue and I are off to Scotland tomorrow for 2 weeks of much needed R&R and to regroup and consolidate for the next step (pardon the pun) in the battle. Time is now running short before 'the off' so I can't do justice to individual posts at the moment - for which I sincerely apologise - otherwise I'll be in deep do-do with Sue for not coming to bed, I did promise an hour ago that I'd be there directly and she packs a mean right hook.

However, Mick I will quickly say that your post in particular has reassured both Sue and I that the system is capable of providing good limbs. Unfortunately that only strengthens a sneaking suspicion I've had for some time that the NHS operates a tiered system whereby one person gets 3 good limbs - and I don't begrudge anybody that - whilst another struggles to get one, as in Sues case.

More when we get back from our hols, enjoy the piece and quiet of my absence.

SUESMAN (Dave)

Share this post


Link to post
Share on other sites

Just have to say that I feel that it is very much down to luck of the draw, considering Mick and I attend the same Limb Centre and our experiences have been so far apart. I really do wish I could be fitted by my local limb centre, it would be a hell of a lot easier and not to mention cheaper. I feel from speaking to a lot of people who attend said Limb centre that for every Mick, there are lots of people who are very unhappy with their fit and thier components and have certainly never been given micro processor or KX06 knees let alone a swim leg as well. I understand that a lot of it is based on the persons need and ability. Fit however has to be down to the prosthetist. Belive me Mick, I have spent many a day trying to get them to get it right.

I will never understand it.

So Suesman, I do have a lot of empathy with Sue and wish her above all a good prosthetist.

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
Sign in to follow this  

×