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Heather Mills - Amputee Forum
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Grum

Question for all NHS patients

How many limbs do you have?  

11 members have voted

  1. 1. How many limbs do you have and what are they?

    • Just the one
      3
    • One Primary plus a "special activity" one
      1
    • One Primary plus a similar spare
      2
    • A Primary, a similar spare AND a "special activity"
      2
    • None
      1
    • Other
      3


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Hi,

Last year for the third year out of the six I've been a patient at my limb center they ran out of money before the end of the financial year. Which meant that they had to stop issuing new limbs. I've also just heard that although the number of amputees in the area is growing the limb center is likely to get a 15% cut in funding. This year I am determined to get a usable prosthesis out of the NHS. Problem is they've got ANOTHER new center manager who needs to go on ANOTHER "fact finding mission" before he can "take ownership" of my situation (this is the third new center manager in three years).

In the past I've been told that the type of limb I require is "well beyond" the funding available within the NHS (This being a plastic TSC suction socket, a Mauch knee with almost any foot thats not made of wood). When I eventually go to a meeting with the new center manager to start the complaint procedure for a third time I would like to have a bit more ammunition. I'd like to be able to say what other NHS limb centers are providing and this is where I need your help.

I've got plenty of anecdotal evidence but I've never actually asked the question so here it is. If you know what components your leg has then please let me know as this will also help to show how poorly set-up this service is a possibly help all patients in the area.

Thanks in advance.

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Bad business, Grum.

Who runs your limb-fitting centre? Is it JUST NHS, or is it a private company + NHS, as many of them are?

(Mine is Blatchfords + NHS at Stanmore, NW London, and although many of us there have had grumbles over the years, I think we'd rate it pretty highly, particularly with the new Clinical Lead who has brought a new spirit of 'can-do' to the place).

Allen, bka, London.

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Very hard to answer your questionnaire as a bilateral.

I'm not using legs anymore as they are causing me a lot of damage. The last time I did have a new set of legs made and up graded feet fitted it went over budget, they had to use money from donations given to the limb centre to help pay for them. There is always someone raising money for our limb centre to help with the cost of limbs and equipment.

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Hello Sparky.

Out of interest, who runs your limb-fitting centre? Is it 100% NHS, or is there a private company involved as well?

I'm interested in case there's a pattern involved, where (for example) Blatchford/NHS centres come out well, and XXX/NHS come out badly. It's the sort of information that we rarely get hold of!

Allen.

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Hi Allen, last time I was there it was a Blatchford/NHS centre.

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Am bilateral also, but answered as if I just had one.

I go to a centre out of my area, and looking at your criteria think it must be Private + NHS, because the limb side is private but there is NHS Consultant, Nurse, Physio etc. I have had no problems getting legs/sockets made, and am just having my fourth one made since my revision about 16 months ago. Though I am b/k and not using anything particularly high tec.

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Same question, Ann: do you know which private company does the leg side of the limb-fitting service at your centre?

Grum: not trying to hijack your thread, but rather to gather a few hard facts to go alongside the (inevitable) anecdotal evidence.

Allen.

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Hi Allen,

My Limb center is Norwich, the prosthetic manufacturing is out-sourced to RSL however please do not confuse this with a private firm. Although the company is a private company they do not undertake any private work at my center which is probably a good thing as the standard of their products would leave them very short of business.

The biggest problem at Norwich is the turnover of senior management and the low expectations the only re-hab consultant has of his patients. I had a report written on me by the senior prosthetist at RSL in 2008 stating my prosthetic needs, since then nothing has happened other than a change in the centre manager, who has been aware of my case for at least three months and so far has also done nothing.

What is the pattern you think you're seeing??

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Hi Ann,

Almost all prosthetic services are out-sourced (private) however this shouldn't make a difference to the service provided. All it means is that the NHS pay a private firm to do the work, no different to them paying a private company to do the cleaning. You still have an NHS consultant who is responsible for prescribing the prosthesis and NHS physio teams who are responsible for teching you how to use it/them.

The BIG problem comes when the companies are also manufacturers or distributers of particular components. They make more money selling their own products so will obviously have a bigger incentive to supply patients with these items. I'm willing to bet that patients at a Blatchforn clinic are, more often than not, prescribed blatchford/endolite products where as at an RSL clinic they will be given products that are distributed by RSL. At the end of the day this stands to reason, they have a duty to shareholders to make as much money as possible.

What is supposed to happen is that the rehab consultants oversee the process and make sure that the needs of the patient are not being ignored and that they are given the best chance possible. Unfortunately, too many rehab consultants have failed to keep up with technology and rely on the advice of the private contractors who they are supposed to be checking on.

I have sat in a meeting with a (now former) center manager, the rehab consultant and the head prosthetist at my center and been told that my needs were not possible with current prosthetic technology (despite them being met perfectly with my current private prosthesis). I then proceeded to open an Ossur catalogue and point out several poducts that met my needs. Then I was told that they cost vast sums of money which I countered with a price list showing how much the NHS pays for these products. Judging by the reaction I got from the consultant this was all news to him and judging by the excuses that the prosthetist was comming up with the only thing that surprised him was that I had access to that information.

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Hi Ann,

Almost all prosthetic services are out-sourced (private) however this shouldn't make a difference to the service provided. All it means is that the NHS pay a private firm to do the work, no different to them paying a private company to do the cleaning. You still have an NHS consultant who is responsible for prescribing the prosthesis and NHS physio teams who are responsible for teching you how to use it/them.

The BIG problem comes when the companies are also manufacturers or distributers of particular components. They make more money selling their own products so will obviously have a bigger incentive to supply patients with these items. I'm willing to bet that patients at a Blatchforn clinic are, more often than not, prescribed blatchford/endolite products where as at an RSL clinic they will be given products that are distributed by RSL. At the end of the day this stands to reason, they have a duty to shareholders to make as much money as possible.

What is supposed to happen is that the rehab consultants oversee the process and make sure that the needs of the patient are not being ignored and that they are given the best chance possible. Unfortunately, too many rehab consultants have failed to keep up with technology and rely on the advice of the private contractors who they are supposed to be checking on.

I have sat in a meeting with a (now former) center manager, the rehab consultant and the head prosthetist at my center and been told that my needs were not possible with current prosthetic technology (despite them being met perfectly with my current private prosthesis). I then proceeded to open an Ossur catalogue and point out several poducts that met my needs. Then I was told that they cost vast sums of money which I countered with a price list showing how much the NHS pays for these products. Judging by the reaction I got from the consultant this was all news to him and judging by the excuses that the prosthetist was comming up with the only thing that surprised him was that I had access to that information.

What you say is very true, I've only been offered a particular brand although other brand components are advertised on the walls of the amputee clinic. My amputee consultant didn't really take much interest in the prosthetic side of things only my ability to cope with going back to work and managing at home with or without prosthetic legs, the mechanical side of things and what I should be given was left to the prosthetist. I will not even go on about NHS wheelchair services.

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Grum:

a) Yes, you're quite right about Blatchfords/NHS, at least at Stanmore. We all wear Blatchfords products, with the occasional bit of Ossur thrown in. And yes, this does colour the relationship between the prosthetists (who get paid by Blatchfords) and the consultants (NHS) and us (we only want legs that work).

b) Pattern? None yet. But I suppose what I'm working towards is ways of complaining. There seems little point in complaining in a general way to the NHS, as it gets swallowed up in the sponge-like way that complaints against vast bodies always do.

But... complaining to (for example) Blatchfords, that THIS particular site is doing fine with their products, but THAT site, also a Blatchfords site, is doing badly, now that might be a different proposition. Viz., you might want (but rarely get) consistency out of the NHS, but you can probably demand it from a private company, who are probably more sensitive to criticism (shareholders and salaries being dependant on Happy Customers).

So, no campaign as yet, and no particular pattern; just gathering data...

And it does occur to me that what you as an individual did in fighting your corner is precisely the sort of thing that SHOULD be done by such as the Limbless Association on our behalf, particularly on behalf of those less articulate or less organised.

Allen, bka, Blatchfords/NHS at Stanmore, London.

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But... complaining to (for example) Blatchfords, that THIS particular site is doing fine with their products, but THAT site, also a Blatchfords site, is doing badly, now that might be a different proposition. Viz., you might want (but rarely get) consistency out of the NHS, but you can probably demand it from a private company, who are probably more sensitive to criticism (shareholders and salaries being dependant on Happy Customers).

Only problem I can see is that the patients aren't the "customer", the NHS is and they don't care about complaints as long as the price is right.

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Yes, you are probably right.

It has always been a problem with the mixture of public and private bodies - each can blame the other, and usually does.

At this stage it's just information-gathering on the basis that information is power, so when I'm trying to help someone make a noise about their duff limbs, I can say "Try writing to the MD of RSL (or whoever).....)"

It's not a campaign or a system, yet, just a trawl!

Allen.

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Same question, Ann: do you know which private company does the leg side of the limb-fitting service at your centre?

Grum: not trying to hijack your thread, but rather to gather a few hard facts to go alongside the (inevitable) anecdotal evidence.

Allen.

The current company doing the prosthetic side at my centre is now RSL also, though they have only just taken over ... so will be interesting to see if there are any differences. I am not sure about the components, but my legs are probably pretty basic and I have been around a few centres in the last ten years or so, both NHS in-house, and also those with (different) private contractors and haven't actually noticed any differences in the prosthesis itself ... but maybe thats got more to do with the type of prosthesis I wear. To be honest though I think even 'in-house' NHS centres have their 'preferred' brands.

I have been wearing limbs since 1970, even then there were different limb firms within one Centre ... in those days the centre's were not run by the NHS (even though often situated in hospitals), but by the Department of Social Security & Pensions (I think). At my initial centre there were three firms, Vessa, Hanger and I think either Blatchford or Steepers. Though then mainly the limbs were mainly made from scratch by metal workers within the centre.

For me though the most important thing is 'socket fit' and the expertise of the prosthetist.

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For me though the most important thing is 'socket fit' and the expertise of the prosthetist.

Absolutely, Ann, without ANY question. I'm only asking in case (for example) ALL RSL sites provide poor service, and ALL Blatchfords provide good service. Not saying that is the case, but if it were, then shouting about it just might prompt some changes.

But I'm with you. I wouldn't care if the Man in the Moon made my legs as long as they were comfortable!

Allen.

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Grum:

Just to add this for your information (and of course your question is going to become much even more relevant nationally as the government's cuts take hold)...

The vague pattern beginning to emerge is that RSL do not have a good name, whereas Blatchfords have a better name. But even then, the quality of the NHS management matters as well. Leicester, for example, which is Blatchfords, has a bad name, to the extent that I have met a couple of people who travel from Leicester to London to attend my limb-fitting centre instead. It seems that the problem at Leicester is a war being waged by the NHS management there. One guy from Leicester had a new leg made for him in four days (from cast to walking), at Stanmore. Not the usual speed, but he had special needs.

Anyway, how have you been getting on with your own brick wall up in Norfolk? Any joy yet?

Allen.

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Grum:

Just to add this for your information (and of course your question is going to become much even more relevant nationally as the government's cuts take hold)...

The vague pattern beginning to emerge is that RSL do not have a good name, whereas Blatchfords have a better name. But even then, the quality of the NHS management matters as well. Leicester, for example, which is Blatchfords, has a bad name, to the extent that I have met a couple of people who travel from Leicester to London to attend my limb-fitting centre instead. It seems that the problem at Leicester is a war being waged by the NHS management there. One guy from Leicester had a new leg made for him in four days (from cast to walking), at Stanmore. Not the usual speed, but he had special needs.

Anyway, how have you been getting on with your own brick wall up in Norfolk? Any joy yet?

Allen.

Well .....there seems a general shortage of prosthetists and technicians ..... or maybe a reluctance on the limb companies to be employing ENOUGH of these. In the last few years I have been around a few centres and to be honest all the prosthetists and technicians are rushed off their feet (sorry about the pun, just an expression) ... generally though very busy, similar situation to the nurses on the wards .... not enough people doing frontline work.

A B/K prosthesis can be made within a week .... so why are we waiting months on end? I have now been waiting since March, I have changed prosthetist because the first two attempts were not right and had problems getting appointments. I am now on my third attempt and have a delivery date of the end of July ..... however, waiting and walking on a prosthesis which doesn't fit properly takes its toll and I now am the proud owner of a pressure sore, am on antibiotics and have to stay off my leg completely ..... so where's the logic? As you can tell I am not a happy bunny at the moment !!

I am glad for your guy from Leicester Allen .... but surely we all have special needs!

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I am glad for your guy from Leicester Allen .... but surely we all have special needs!

Absolutely, Ann, without any shadow of a doubt.

And why some of us are lucky and have decent limb-fitting centres and some of us are UNLUCKY and have rubbish ones, I know not.

Fairness and top-quality care should be watchwords by which health services are provided; they aren't.

There is no supremo, no man (or preferably woman) in charge of this branch of the NHS (limbs and prosthetics). If there WERE, then their first duty should be to standardise provision across the country, and to bring ALL limb-fitting centres up to the standards of the best ones. And if there ARE failing centres, like Leicester, or failing 'partners', like RSL, then arses should be kicked and jobs (preferably management jobs) should be cut.

Dream on, of course - but unless we dream of what we want, and shout about it, there is no chance of improvement.

(Now, if I ruled the world...)

Allen.

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Well here's one who has been shouting for years Allen ... but obviously need to shout louder.

In my 'world' the whole of the NHS would be standardised so everyone got access to the treatment or drugs they needed. Like you say, if places are not up to standard then arses should be kicked. Trouble is individual service users are up against it, as no one in the NHS speaks out and there is very little accountability when mistakes are made. We only have to watch the national news to see how, even when failures are recognised, chief execs and the like are rewarded when they are removed with a big 'pay off'.

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A B/K prosthesis can be made within a week .... so why are we waiting months on end? I have now been waiting since March,

Think yourself lucky Ann, I've been waiting since October....2004!!!

Latest update. Have agreed a spec (Plastic suction socket, rotator, Mauch gait master knee and basic carbon foot) which is pretty much what I was prescribed for my first prosthesis. However this is far beyond the budget of Norwich, apparently costing double what they'd normally allow for an above knee amputee. This means I have to apply for special funding which I'm unlikely to get because I already have a privately funded leg (which is required to be set-up specifically for work meaning that I am severely limited in my personal life and leaving me with no spare).

GRRRRRRR!!!!!!!!

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Well maybe I am unrealistic in todays climate, Grum. But I don't think anyone should be waiting that long in this day and age .... even if you have to apply for special funding. If you have a privately funded leg specifically made for your work .... I should think the NHS should be able to provide an adequate walking leg for you, within budget, to wear everyday. Have you thought of compromising on some of the components, I know you say they are prescribed, not sure of your circumstances, but if it was me I'd be trying to negotiate with them on that .... especially if I had another privately funded leg.

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Well maybe I am unrealistic in todays climate, Grum. But I don't think anyone should be waiting that long in this day and age .... even if you have to apply for special funding. If you have a privately funded leg specifically made for your work .... I should think the NHS should be able to provide an adequate walking leg for you, within budget, to wear everyday. Have you thought of compromising on some of the components, I know you say they are prescribed, not sure of your circumstances, but if it was me I'd be trying to negotiate with them on that .... especially if I had another privately funded leg.

That spec IS me compromising on compoinents! When I arrived at Norwich, having transfered from Roehampton, I was on an IP+. That leg was actually posted to Norwich to be issued to me because Roehampton hadn't finished it by the time I moved. As soon as Norwich took it out of the box they said they couldn't help me as they didn't have a programmer or trained techincian in order to be able to set the knee up.

All I need is a knee with a minimum of 126 degrees of flexion, the ability to walk down stairs and ramps safely and normally, a rotator so that I can cahnge my clothes and shoes without having to remove my prosthesis and a socket comfortable enough that I can wear it for up to 46 hours.

The socket comfort is down to skill in manufacture more than anything else and could easily be copied from me existing socket which already meets my requirements.

The rotator should be a standard part on ALL above knee prostheses, it costs so little for the benefit it provides and anyone who thinks that it is acceptable to expect amputees to have to remove their prosthesis in order to reach their footware is asking too much.

As for the Mauch, it is no more than I was given when I first left hospital. It is a basic knee which has been around since before I was born, hardly cutting edge technology and is one of the cheapest hydraulic knees available that allows me to do the very basics of my life.

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That spec IS me compromising on compoinents! When I arrived at Norwich, having transfered from Roehampton, I was on an IP+. That leg was actually posted to Norwich to be issued to me because Roehampton hadn't finished it by the time I moved. As soon as Norwich took it out of the box they said they couldn't help me as they didn't have a programmer or trained techincian in order to be able to set the knee up.

That is ridiculous, all they needed to do was phone Blatchford and they would have sent someone to fit it for them and train them to program it... simples...

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OBL is right, of course, but...

I fear the problem is made worse by having an outside supplier (RSL or Blatchfords) involved with an NHS department.

In an ideal world, the NHS managers would SHOUT at the supplier and say precisely what OBL said. But (a) they can't as there is probably a clause in the contract about 'interfering' with internal matters and (b) they haven't got the bottle (translation for non-UK readers: courage).

(And of course the RSL management could do the same, i.e. do what OBL suggests, but commercial interests and of course THEIR lack of bottle will stop them doing it for as long as the sun sets).

Allen.

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