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NHS/Private. Any experience?

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Mainly for Brits, but also for anyone else interested:

I am getting fed up with the quality of care from prosthetists on the NHS. The leg itself is okay, I think, but the adjustments, the alignments, all those bits of fine-tuning you need to make a good socket actually work in the street, is lacking.

So, I can scrape up the money to go private. But is it worth it? Has anyone here been to one of the private outfits and come away with a top-quality leg? In the past I've spoken to a few people who have gone down this road, who have said that it was money down the drain.

I'd like some feedback before I spend a lot of money!

Thanks.

Allen, London (left bka).

(PS I don't wear a 'skin' or cosmesis, so that angle doesn't worry me).

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Hey, Allen... no experience here, but I just wanted to say "hi" and "welcome"!

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Hello Cherylm. Good to find you here!

It's one of the negatives of a state health service - if you have problems with an individual prosthetist (for example) it's very hard to complain to anyone, or to get a different one. Whereas if you pay for the service (as we do here for many other health services) it's far easier to make a fuss, or vote with your feet (foot).

Further complicated here by the fact that many of the NHS prosthetists also do private work, wearing the same clothes, working in the same limb-fitting centres, so if you're 'just' a state patient there's always the nagging thought in the back of your mind, 'Am I getting the same treatment as I would do if I paid for it?'

Ah well. Life's rich pattern, I suppose...

Allen.

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Further complicated here by the fact that many of the NHS prosthetists also do private work, wearing the same clothes, working in the same limb-fitting centres,

...and this is the point, which would be a reason not to pay... in my experience, to get the best out of the NHS, you've got to take the lead. You've got to do your homework, so you've got some idea of what's going on, and make a nuisance of yourself. It's their duty to serve you, if you are a pain to satisfy, they will do their best to fit you the best they can,. so you aren't a regular visitor to their centre. What they will want, is to not have to see you, and the only way they can do that is to satify you. If you're timid and subservient, you won't get the best service.

It can be tiring, but it matters...

Having said all of that, from what I've heard, the difference is, that if you go to a private clinic (they normally have the decency to have private clinics away from the NHS clinics I think), you get more time with your Prosthetist, and as a paying customer, you should get greater satisfaction at least in that regard.

Unfortunately I can't comment on my experience of the private route as I've never actually experienced it.

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Hello oneblueleg, good to talk to you.

If I am timid and subservient, then the Atlantic Ocean is slightly damp.

If I suffer from anything (apart from an ill-fitting socket) it is from being REASONABLE.

But I do take your point, and can't disagree with it.

Allen.

(Oh, I'm going in tomorrow morning which is 4 days after my last appointment, after being given the usual 'give it 2 or 3 weeks bullsh!t', so I'm not THAT reasonable...)

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Hello oneblueleg, good to talk to you.

If I am timid and subservient, then the Atlantic Ocean is slightly damp.

If I suffer from anything (apart from an ill-fitting socket) it is from being REASONABLE.

But I do take your point, and can't disagree with it.

Allen.

(Oh, I'm going in tomorrow morning which is 4 days after my last appointment, after being given the usual 'give it 2 or 3 weeks bullsh!t', so I'm not THAT reasonable...)

If it ain't right in the clinic, it gonna be right at home...

Though I'd give a caviat.... unless it's a totally new method, such as from an open ended quad to an IC socket for an AK as an example, unless it's a big change like that, it should fit well in the clinic at the very least.

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I wanted the best (perception of C- leg ) and have an active 93 year old mother who ofered to pay

I went private too early - at 3 months after first NHS leg. stump hadnt settled so recently had to pay out anoither £3k for a new socket.

Many have stated and I agree with experience that high tech doesnt matter, fit does. Though my high tech knee is better than my lower spec leg its all no use if you are covered in sores.

I cannot say my private socket is a better fit than my NHS; both are good, both could be better.

I have 2 first rate prosthetists.

private prosthetist will spend more time fine tuning, but have NEVER felt short changed on tie given by NHS prosthetists.

The only area felt short changed by NHS was physio both in walking and upper body rehab.

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Hi Allen,

I got my running leg made privately at the same place I got my other NHS legs from. The socket was, if anything, a worse fit than the NHS legs and cost me 3,000 pounds. In the end I had to get the socket remade by my bloke in HK who charged me 150 quid for the best socket I have ever had.

Go figure.

In short I would say don't bother with the NHS private route but go to Dorset or somewhere if you really want to try it out.

F

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Thanks for the interesting input.

Having made 'does anyone here do private consultation?' noises at my NHS limb-fitting centre and getting the incredibly surprising answer 'yes they all do', things have moved on a little.

I am seeing the manager of the department in a week or so, and will see where that gets me.

I am seeing a private prosthetic supplier and consultant who gives a report on what you need and what it will cost, which should be interesting.

I am sure there is a scale of boxes ticked at the NHS departments, and when I first needed a leg, I fell into the 'over 55' box, which gave me a dead basic non-adjustable 'old man's' leg. I walk, I cycle, I cook, clean, shop, etc., and although I ain't ever going to be young again, I am not wheelchair material yet.

The leg, by the way is this (click on the thumbnail-sized pic below):

Observation at the limb-fitting centre over the past 3-1/2 years has indicated that older and slower amputees get this type, while younger and (ostensibly) fitter ones get the fancier adjustables, with a long post and nicely crafted 'cup' tops.

Ah well.

I wish I had the dosh, Fiona, to try this one or that one, but I don't, nor did I have private insurance. The bloke who offers private prosthetic consultations does say 'his' legs start at £2K, which I could run to, so I'll wait and discuss it with him. I know there are ways of getting the NHS funding transferred to a private supplier, but I don't think I could face jumping through the hoops and legal guff that I bet you have to go through first!

I'll keep in touch.

Allen.

post-2399-1227697450_thumb.jpg

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You sound resigned to the fact that the NHS have categorizes you so nothing can be done... if you make a scene you WILL get what you want on the NHS. You need to demonstrate, not physically, but with your passion, that you need higher activity products to get the most out of life.

Don't take what they say as being right because they say it, make a nuisance of yourself, they'll appreicate why... eventually.

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Hello oneblue.

Yes, of course you're right, and I will gird up my loins, yet again, and have a go. But I am sure you know the score, and will know it more as you get older, but when you have lots of different problems (no, this isn't a whinge, just an objective assessment!), there are times when, like the singer of 'Ol Man River', you really do get weary and sick of trying...

I've got several days before I see The Man, so I shall make notes and muster all possible evidence. He who prepares, wins.

Allen.

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Hello oneblue.

Yes, of course you're right, and I will gird up my loins, yet again, and have a go. But I am sure you know the score, and will know it more as you get older, but when you have lots of different problems (no, this isn't a whinge, just an objective assessment!), there are times when, like the singer of 'Ol Man River', you really do get weary and sick of trying...

I've got several days before I see The Man, so I shall make notes and muster all possible evidence. He who prepares, wins.

Allen.

Know where you're coming from Allen, just think it's a real shame that you're driven to feeling like that.

Good luck... remember, I'm stood behind you when you're giving to straight to them... I'm pushing you in the back and I'm ready to chip in... obviously I'm not actually there, but just imagine I am, you don't know what I look like... I don't think, so imagine me as a big imposing impressive character, be inspired by my support...

Or maybe imagine you're fighting to get someone else what they want and deserve, and it's not for you... you'll get a new lease of life... just a thought... try it...

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hey allen,

my experience of the nhs has been complete opposite to yours and i think its is to do with the ticky boxes you were on about. im eighteen, used to dance, horseride, spent all day on my feet, went for several mile walks etc etc. and so ticked all their high activity boxes. would say, however, that my limb centre does seem to ask you to demonstrate how much you use it and regular check ups on the hardware seems to be the biggest indication of this. keep fighting and make them understand what you need.

good luck

bex x

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Hello Bex,

And thanks for the reply. Yes, I did try to fool them that I was an eighteen-year-old who just looked a little older, but they weren't having it.

This time I shall cartwheel in and kick the prosthetic manager in the ear to prove my bodily functions are still functioning. I'll let you know if it works.

Allen.

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So, I saw The Man, made my case, told him why I thought my current prosthetist wasn't doing the job, etc., etc.... and

Well, he didn't say "Yes, I know what you mean, isn't he a tosser?" which would have been remarkable. What he (The Man that is) DID do was to question whether my foot was the best type for me, whether my liner was the best type for me, and then re-cast me there and then (I had been cast six weeks ago by my current prosthetist), and intends to make a fully adjustable test-rig/socket to make sure that the socket-proper is the best possible. Top man. Knew what he was talking about, utterly free of crap, and treated me as an intelligent person. Couldn't ask for more.

It took a great deal out of me to complain in this way. I am not one of life's complainers. But I am very glad I did, because it will make the remaining ten or twenty years of my life significantly better if I am able to walk without pain.

So, thanks for the support. And I shall report back once I have my new leg.

Allen.

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Allen, you weren't "complaining".... you were stating a fact! Congratulations on doing so and getting a good response... I hope the new socket turns out to be a fine, pain-free fit.

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Well done Allen,

You did the right thing and I am glad you got a good response, I hope they manage to give you a better fit.

It really takes it out of you when you have to 'complain' or as Cheryl puts it.....state the facts.

Let us know how you get on.

Lynne

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One thing The Man did question, and I couldn't reply to, was the Matter of Feet.

He asked 'have you tried any other feet?' To which the answer for me (and I would guess most UK NHS patients) is "No." How would we? No prosthetic foot shops about, where you can go and try this one or that one. You get given a foot, and that's your foot.

But one curious incident did come back to me. Six months ago, I broke a foot, and went into the limb-fitting centre to have a new one fitted (I was wearing my spare at the time, which was identical to my first foot). Anyway, he fitted the brand-new foot, and it was Magic. Amazing. I felt as if I could run, walk for ever, etc. The feeling lasted 20 minutes, then went. At the time I put it down to the weather, but now I am wondering whether the foot, being brand new reacted in one way, then after me bouncing on it for 100+ steps, lost its initial resiliance and settled down into the pattern of the original feet - which has always seemed to me to be dropping away back-left, but I've never managed to get a prosthetist to go along with me.

Maybe The Man will pursue this one.

Any of you had experience of different feet, and got on differently?

Allen.

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I wear different knees and feet from time to time and always find that they feel different for a while, then I get used to them. It's only when I put my old leg back on that I really feel how different the new one actually was... whatever I try I get used to, I imagine it's the same with most people... I bet if you put your old foot back on straight after you felt the new foot 'settle down' you would have noticed a big difference.

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as ever find agreeing with OBL.

all the components make a difference. I was amazed at the difference I noticed when getting a more sophisticated foot. Initially had one that was high impact - wasnt right but still huge better than basic. I like one with adjustable heel so I can walk bear foot at home and not alwys wear deck shoes when out, comfortable too.

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