Possible new prosthetic limb charity for ex-services?

Discussion in 'Charities and Welfare' started by mephisto, Oct 10, 2007.

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  1. After my injury I got given a very nice leg. Well, when I say 'very nice', what I really mean is that I could walk on it and it didn't resemble (too closely) something related by blood to Frankenstein!

    I was never that happy with it so I moaned. And moaned. Then I had another moan, followed by a bit of another one.

    Finally, after lots of moaning, I got told I was going to get a new leg. :D

    The day dawned when I was to go to the hospital to see my new leg and to get it fitted and sorted out. I'd seen pictures of it in advance and had great hopes for it. I arrived at the hospital and checked in. The woman came out and I had this feeling that she'd looked at me a bit quizically, but I passed that off as paranoia. She beckoned me into the room and in I went and sat down. She went off to get it. She came back and ...

    It was a black leg! :muhaha:

    To be honest, it was a jolly nice leg but would have looked extremely strange on me! Possibly I could have explained it by claiming gangrene but I doubt anyone would have fallen for that!

    The leg was taken away and I was promised another (more appropriate) one shortly.

    Four months later it still hadn't arrived. (It did arrive eventually, after about 7 months).

    In the end I decided to buy my own. And there begins my ongoing saga of legs...

    The ones I bought were 'sports legs'. You have to buy two really, just in case one breaks and you need a stand-in (pun intended! :D )

    The great thing about buying your own is that you can REALLY be fussy about what you want, you can complain all you want, you can demand this and that etc. Expensive, but worth it.

    However, something has been bothering me about it. I am lucky, I am in a fairly reasonable financial position such that I could afford to buy my own. I know of many amputees (some colleagues who I know personally, others I don't know but still ex-forces) who really CAN'T afford to buy expensive state-of-the-art legs.

    I've been wondering about setting up some sort of charity with the specific and sole aim of funding those who don't have the financial means, to buy the legs/arms which they really want.

    Don't get me wrong, I wouldn't like to claim that I didn't get a decent leg offered to me free-of-charge, I did. But it just wasn't the leg I really wanted.

    When you lose a limb, it becomes very important that the prosthetic is something you feel really comfortable with (not just physically but also emotionally).

    Probably, to those of you with all limbs intact, this might seem totally unnecessary, after all, so long as we get a leg surely that should be good enough? I would argue that it's not.

    There are a few charities who deal with amputees in general but I was thinking about one especially for ex-forces. I have spoken to the Charities Commission and there definitely isn't any currently registered charity doing such work. I would have to put up some initial funds in order to get it registered but I'm perfectly prepared to do that (it's £5,000 that I have to put up in the first instance before I can apply for charitable status). I would call it something like 'Stand Together' - (there is already a charity called 'A leg to stand on'! which caters to a different group of people.)

    The International Wheelchair & Amputee Sports Federation have offered to help me to find suppliers who would do special deals for such a charity.

    Anyone have any views on this?
  2. I would prefer to see this get more replies than some person asking that we all join an 'English' society.

    I'm not saying that my posts are more important than anyone else's, mostly I post rubbish, but this happens to be very important and, I believe, something which most people on this site would have time for.
  3. These three points you make are something i can fully understand and agree with.
    i thought that the Sundays Times had launched a charity to do just this if however if im barking up a wrong tree it certainly is something that should be considered for being set up
  4. Yes, I had a pm about this. As far as the Charities Commission tell me, there is no current charity which does this as their sole and only objective. It may be that other people are considering setting one up, in which case, great.
  5. you are thinking of Help for Heroes I think - Clarkson and Bryn Parry set it up and they are raising funds for a swimming pool at Headley Court and getting people to donate "days out" etc to assist the injured (Spanish Dave has offered the use of a villa in Spain as I recall).
  6. Hi Mephisto, perhaps you could talk to BLESMA about starting a fundraising stream particularly for this?
  7. Yes, I have talked to BLESMA. The stream of thinking at the moment would be to set up an entirely new charity to ONLY fund the purchase of limbs of choice. Hopefully we would work in conjunction with BLESMA. The aims and objectives of BLESMA are to help and support amputees, they don't specifically and solely fund the purchase of specific limbs (particularly limbs of choice, rather than limbs of function). There would certainly be no competition between this charity and BLESMA who are, in my opinion, an excellent charity. Hopefully, it would work that people could contact BLESMA for help and support (as they always have done), there are a plethora of things amputees need help and support with, not just new limbs!, and then, if someone specifically needed a new limb or a limb which was preferable to them, BLESMA could refer them on to us. That sort of thing. I wouldn't dream of setting up a charity to offer support in terms of emotional support, I'm not qualified to do that and BLESMA do it very well. This is solely intended to financially aid people to buy a limb of their choice. No other purpose. Of course, we would also refer people to BLESMA (and/or a couple of other organisations) if they needed other types of help or support.

    The trouble is, you have to state specific aims when you set up a charity. Thus, this possible new charity would make it quite clear to any donators that they are donating for the specific and sole purpose of buying a limb.

    Interestingly enough, I had a pm from another forum user who runs an existing charity and he made the point that you rarely get much support until you actually start helping people. Whilst trying to set it up most people will point out holes, criticise, etc. That's ok, if I didn't want opinions I wouldn't have posted it but please don't think I didn't do any research before coming up with the idea, I did and, hopefully, we will be able to help lots of people (which is my only intention).
  8. Understood, I just thought that as BLESMA have the established profile, they have a good base for starting up a special campaign for 'bespoke' prothetics, whereas you'd be starting from scratch. Didn't mean to imply you hadn't thought about it.
  9. I think it would be beneficial if you got yourself out there and started making waves to show how you intend to make the difference. If your idea has legs (sorry about the pun) then people will begin to listen. Show them that you're not a 'flash in the Pan' and they will begin to take you seriously.

    Dont give up
  10. To be honest our government should be providing more funding for new prosthetic limbs etc.

    In my own experience i dont have a limb missing only ,Mine are only messed up .

    The problem with surgical depts they have the funding but they employ company's who dont have a clue what you need and also from a cosmetic point of view something to give you confidence .

    I needed a new leg brace when they showed me what they were going to give me it was totally disgusting as if people got to be seen as a misfit in society .In the end my mate to is physical instructor in the army scanned all the websites for me and gave me the details to show my surgeon with in four weeks i had the sports brace i needed .

    So if you are going to the hospital and they are not giving you the new prosthetic limb you need to live a normal life as possible then complain and complain because you should not suffer because of this to the nhs trust because they are not doing there job properly .
  11. I lost my left leg below knee to a landmine in Lebanon in 2002. The first prosthetics made for me in the disablement centre in Cambridge were basic but got me up walking and eventually working. Early prosthetics need to be basic as they require regular replacement due to shrinkage in muscle tissue over a period of time. In my case (below knee) the shrinkage was the calf muscle that, in normal usage, does little more than operate the foot ... once the foot has gone the muscle wastes away. This shrinkage is continuous over a period of time and differs from individual to individual. I personally didn't 'stabilise' until after a year and about five limbs before I got a limb on the NHS that was ok but nothing special (bearing in mind my tabbing/running days were well behind me!). I also got a neutrally bouyant leg with rotating foot to enable me to continue diving.

    After a while I broke both ... and then again ... and then again!!! I eventually persuaded the NHS centre in Medway (I had moved from the Cambridge area) to provide me with a high activity/high impact prosthesis and foot. Big arguments to get it but eventually I was told it was either a new spare leg or a diving leg ... not both as the budget would not allow. I screamed and shouted and held my breath like a child denied a new toy. I also explained to the doctor (the budget controller) that all my working life I had paid my NI contributions. I also explained that NI stood for National Insurance and surely the government had taken my Insurance contributions and therefore, like all insurance schemes, it was time to cough up when things go wrong. In addition I threatened them with BLESMA (I'm a member), my local MP (an ex rupert and good mate) and the press! I got all three limbs that I wanted and the last couple of years I have finally got back to normality with excellent quality (if somewhat multi-coloured) limbs.

    I would say that your idea for a charity to provide funds for a limb is a good idea. However, we have in place, in this country, a system to supply good quality and high tech prosthetic limbs. So if we give money to allow injured servicemen to purchace these limbs, we allow that system to 'get away with it' and continue to penny pinch! Would it not be better to insist that our disablement centres give the best and most appropriate devices to allow servicemen injured to continue as normal a life that is possible given their injuries? In which case, better support to BLESMA, SSAFA and other services charities would be preferable so that these centres can be lobbied and badgered to provide the very best service to those who have given the very best of service.
  12. I am trying to bite my tounge on this , however the idea is noble and well meant but the thing is, charity this charity that is leading to charity fatigue. To be blunt ,my first prothetics wer'nt gucci or even new, I was grateful for what I got at the time. I know things and attitudes have changed in the last couple of decades.
    k13eod, good drills, sticking to your guns for what you want.

    I would rather support an existing charity to progress rather than another one that needs establishment. mephisto if you go for it you will have ( for what its worth ) my respect, but please,please ,please, dont go off half cocked get all the funding and sponsorship you can , if it happens just make sure every one knows about it .
    Good Luck

  13. Mephisto,

    I cannot begin to understand what losing a limb means mentally and physically but believe me you have my support.

    What k13eod put makes sence and two things come out of it 1. I wish you had posed the Q on ARRSE prior to parting with your own cash and 2. There is a system its the advice & help to those recently injured that would be beneficial.

    Perhaps with your combined experienced you could become Champion of the cause and advise or mentor as applicable.

    What is annual figure, cost of limbs, suggested timeframe for muscle tissue to shrink before bespoke limb suitable?

    As stated I'm on the outside looking in on this one so absolutely no offence meant.
  14. In my opinion, and based on limited experience, it would be a waste of time and money to purchase a limb within the first year of amputation as the prosthetic would not fit after shrinkage. I would actually suggest a period of two years before total stabilisation.

    It is to easy to become frustrated by the penny pinching of the NHS when it comes to what is on offer; you have to stand up to them and convince them that you are highly active and need the very best device to continue this activity. Now, they are not likely to provide devices that are bionic, but you can still get an excellent and suitable device ... if you push them and you have the backing of a good lobbying organisation such as BLESMA.

    Some people still prefer to buy a prosthetic (as Mephisto above) because, for whatever reason, the centre can't get it right (bear in mind that every amputee is different). But beware; once you have purchased it, it won't be looked after for free by the NHS. And there will be regular servicing, replacement of worn/broken components, repairs and eventual replacement. So if you chose to buy, remember it isn't a one off payment for a limb. All at your own expense when going private, but if you go with the system all for free.

    A prosthetic is an amputees best friend, but it is never a friend for life!
  15. I'm very interested in the replies on this thread, cheers.

    In particular, I agree with almost everything k13eod says, particuarly about not letting the system 'off the hook'. I also agree that people might see it as cherry picking - ie you get a perfectly functional limb given free - I guess I'm talking from my own experience here. I was a keen marathon runner before the injury and I really needed a different type of leg to do the things I wanted to do on it.

    I absolutely agree that, for at least a year afterwards, it wouldn't be appropriate to buy expensive prosthetics and, as you said, a leg isn't for life!

    I guess it's just that being able to run again has REALLY and seriously improved my quality of life. I might have got one if I'd waited, but it would have taken a very long time and, even then, I probably wouldn't have actually got the one I wanted.

    I feel very passionate about this and honestly believe that I'm doing it for the right reasons but I absolutely take on board what k13eod and wheelchairwarrier have said. Also the things said by mediumwhiteamericano have been very helpful.

    Thanks very much.