16 replies to this topic

[Brocky]

A bit of background first - I suffer from extensive DDD, apparently have the spine of a 70 year old (I'm only 41) , and have 2 ruptured discs at L4/5 and L5/S1. The disc at L4/5 has actually shattered and compromised the nerves (according to the neurosurgeon anyway). This has got so bad now that I can no longer walk any distance and just about manage to walk to the car on my drive (approx 10 metres) in extreme pain. I'm on antidepressants as I'm finding it tough to accept my lack of mobility which consists of me on the sofa most days. I've cried more in the last few months than the rest of my life because of not being able to get out.

I originally went to my GP after years of on/off back problems and physio, who referred me again to a physio for an assessment and to see if there was anything that he could do now. My condition was so bad and my movement so limited he wouldn't touch me as he said there was something seriously wrong. Tell me something I don't know!!

Back to my GP who then referred me to a rheumatologist who did blood test for HL-B27, x-rays, and finally an MRI scan. This confirmed that I had the above problems and said that although I do have the spine of a 70 year old I need to see a neurosurgeon.

Back to my GP who then referred me to a neurosurgeon who reviewed my MRI scan and gave me a full examination for movement etc. He said that with the extent of the damage he could operate BUT, there was only a 50% chance the problem wouldn’t get worse, there wouldn’t be any relief from any pain AND because of the damage and the complexity of the procedure I could be paralyzed. I chose not to have the operation.

Back to my GP because I now need a wheelchair to get around and I’m currently a prisoner in my own home. The GP refers me to the NHS wheelchair service and guess what? I turn up for my assessment this morning and they’re now saying I need to go to a physio for an assessment before they can provide me with a wheelchair.

All of this has happened over the last 18 months and I really feel that I’m being messed around by the system due to insufficient funding. It always looks on paper that they are doing something for me but not actually doing anything for me.

Any suggestions on what to do next, apart from wait the weeks for another physio appointment?

[HiltonP]

Why not just go out and buy your own wheelchair?
(just like you'd buy a car, a television, or a stove . . .)

[Brocky]

HiltonP, on Apr 15 2009, 02:13 PM, said:

Why not just go out and buy your own wheelchair?
(just like you'd buy a car, a television, or a stove . . .)

I'm not working at the moment so even £200 for a basic chair is being spent on keeping a room over my head (I just hope the TV or stove don't break...). I have a borrowed chair but its so heavy I need help from my wife to even lift it out of the house.

[ems]

I'd buy your own, at least you will have a choice in the matter then For someone who can walk .. the chair that they may or may not give you will be a large pile of ***** anyway! You wont be given a lovely light framed chair, you will probably get given big heavy folding chair that most probably wont do you any favours. Just a though, why did'nt your neurosurseon..or your rheumatologist or consultants refer you for a wheelchair.. just wondering who told you, that a chair should be given to you.....or did you ask them...?

Honestly.. we've all had it up to **** here with wheelchair services, even when you are refered to them, and have been for yrs, they are still **** ;) I'd do your;sef a favour and go buy one.. I'd look at ebay first though ;)

[Brocky]

I was referred to them by my GP as my condition has gone down hill considerably in the last 6 months.

The wheelchair service did show me a potential chair and you’re absolutely right when you say it will be heavy and useless. What I was hoping for was a voucher so that I can put it towards something that I could actually lift into the car without causing more injury to myself.

Its crazy as they’d rather suggest a heavier chair and a hoist than a lighter chair in the first place. Then again I suppose the wheelchair would come out of one miniscule budget, and the hoist someone else’s miniscule budget. Maybe Jackie Smith should refund some of her expenses, then the NHS budgets could be bigger………

[ems]

I personally doubt you would get anything much on a voucher, as there is a sliding scale for the amount on a voucher. Where I am, on category G, which is "needs active lightweight wheelchair fulltime", my voucher was £875 it did go up to £1345, but even so that was only half the amount I required for a light chair.. Some authorities criteria, as some know on this forum are pretty strict, ie if you *can* walk, they wont even consider you, and some authorities are slightly more relaxed, but even then as you are going to be in category A-C, being that you can actually walk without aid, even be it only a few metres, that voucher is not going to get much atall. And then, with the voucher you can really only shop at a *wheelchair supplier*, ie a mobility shop, where its going to cost more anyway.... I take it you've browsed the cost of lightweight wheelchairs?

Another possibility, is to ask your local red cross centre, you can hire a chair out very cheaply.. and on the ebay thing.. chairs go for absolute pitance on eBay,

http://search.ebay.c...ir_W0QQfromZR34

Brocky, on Apr 15 2009, 04:13 PM, said:

I was referred to them by my GP as my condition has gone down hill considerably in the last 6 months.

The wheelchair service did show me a potential chair and you’re absolutely right when you say it will be heavy and useless. What I was hoping for was a voucher so that I can put it towards something that I could actually lift into the car without causing more injury to myself.

Its crazy as they’d rather suggest a heavier chair and a hoist than a lighter chair in the first place. Then again I suppose the wheelchair would come out of one miniscule budget, and the hoist someone else’s miniscule budget. Maybe Jackie Smith should refund some of her expenses, then the NHS budgets could be bigger………

[greybeard]

Do as has been suggested. I can walk a few paces and did get a chair from the wheelchair service. It was awful, heavy and clunky. I gave it back and searched ebay etc. After only a short time I acquired an almost new Otto Bock valued at around £600 new, for just £150. It's not in the same class as Ems' top of the range lightweight but I really don't need one like that and it is very much easier to handle that one I was issued.

You just have to be patient and be on ebay at the right time. There are bargains to be had.

Edited by greybeard, 16 April 2009 - 09:44 PM.

[Lucydog]

Hi
You might want to say where in the country you are and list your seat measurements and height. You never know someone might have one for sale here or even let you have a spare.

On another note, if you are on benefit you could apply to the social fund. Although its a loan you pay it back at about a pound a week. if you are professionally qualified I know a charity that might be able to help.

I bought my first chair on Ebay like many others. An RGK performance, its great. I actually sold things to finance it, it does work if you do that and doesnt take too long.

cheers
Lorraine

[Brocky]

Thanks for all of your suggestions I'll be checking ebay religiously to see if I can find a bargain.

I've been looking around at prices here in the UK and across the pond and can't believe the difference in price. You can the same in dollars as what we pay in pounds for the same item. Is there anything in the UK that doesn't rip the consumer off? Even with the exchange rate at what it is they're still a lot cheaper.

[greybeard]

Brocky, on Apr 15 2009, 08:11 PM, said:

Thanks for all of your suggestions I'll be checking ebay religiously to see if I can find a bargain.

I've been looking around at prices here in the UK and across the pond and can't believe the difference in price. You can the same in dollars as what we pay in pounds for the same item. Is there anything in the UK that doesn't rip the consumer off?

Short answer - If the item is medical related - "NO!"

[wriggley]

First chair i had i paid for from the states. from sportaid.com they were awesome. I actually sold it on ebay

next one i got i paid for again ive had it for 6-7 yrs and it was an ex demo still cost me £1900. Still best 2 grand i ever spent

Different circumstances now as im a student im praying i get a job soon so i can apply for a new chair through access to work

i was given a chair by bradford wheelchair services old red and crappy! I was then offer what the girl described as a very generous voucher offer. I actually fell of the examination table laughing. It was a whole... just as well you guys are sitting down as the staggering amount maybe enough to make you swoon.... £249! LOL

[cyclops12]

where abouts in the uk are you brocky ??

[Scribbler]

HiltonP, on Apr 15 2009, 02:13 PM, said:

Why not just go out and buy your own wheelchair?
(just like you'd buy a car, a television, or a stove . . .)

In 50 years as a C4/5 I've only had 2 NHS manual wheelchairs; the one I was issued with when leaving Stoke and the one in my shed, which is over 40 years old.

Since then I've always been independant and bought wheelchairs, hoists and other equipment; I wasn't even registered with my SS as disabled until my wife became ill.

I consider myself lucky, as I get a good War Disablement Pension from the RAF and during my wifes illness and after she died I have PA's to look after me at home using the Direct Payment Scheme. I still have to contribute, which is like £200 per "week", plus run and maintain my home. This has to pass Health & Safety Standards as I employ PA's.

My hoist is 20 years old and my electric wheelchair (a basic Invacare Mirage) needed replacing. Over a year ago my SW put in for me to be assessed for the voucher scheme, but nothing was ever done.

Now I've had to buy my own replacement chair, (another basic Invacare Mirage) but I cant afford a new hoist, as I ended up with an overdraft for the first time in my life.

Because I've always been independant and got on with life I get nothing. Because I manage my own care so efficiently my SW never bothers to visit or help; they're too busy helping addicts and criminals, they never help the victims. Why should I go round shouting, "I'm a hero look at my medal, help me"! Its not my style.

We shouldn't have to buy our own essential equipment, that's what the voucher scheme was supposed to do.

Sit on your computer all day and night bidding on ebay for something thats essential for some of us; B s!!!

If your so convinced that's the way to go, then I suggest you get it for him.

I used to look at this site every day; I rarely bother now, but I just looked today and saw this.

Edited by Scribbler, 16 April 2009 - 06:16 PM.

[jane]

yep, i went to wheelchair services, they told me what i needed and recommended something, but said i could not have it on NHS. they gave me a voucher for £500. my chair cost £5500. !!, however, access to work funded 80percent of it. so i could continue to work.

[HiltonP]

Scribbler, on Apr 16 2009, 07:15 PM, said:

HiltonP, on Apr 15 2009, 02:13 PM, said:

Why not just go out and buy your own wheelchair?
(just like you'd buy a car, a television, or a stove . . .)

In 50 years as a C4/5 I've only had 2 NHS manual wheelchairs; the one I was issued with when leaving Stoke and the one in my shed, which is over 40 years old.

Since then I've always been independant and bought wheelchairs, hoists and other equipment; I wasn't even registered with my SS as disabled until my wife became ill.

I consider myself lucky, as I get a good War Disablement Pension from the RAF and during my wifes illness and after she died I have PA's to look after me at home using the Direct Payment Scheme. I still have to contribute, which is like £200 per "week", plus run and maintain my home. This has to pass Health & Safety Standards as I employ PA's.

My hoist is 20 years old and my electric wheelchair (a basic Invacare Mirage) needed replacing. Over a year ago my SW put in for me to be assessed for the voucher scheme, but nothing was ever done.

Now I've had to buy my own replacement chair, (another basic Invacare Mirage) but I cant afford a new hoist, as I ended up with an overdraft for the first time in my life.

Because I've always been independant and got on with life I get nothing. Because I manage my own care so efficiently my SW never bothers to visit or help; they're too busy helping addicts and criminals, they never help the victims. Why should I go round shouting, "I'm a hero look at my medal, help me"! Its not my style.

We shouldn't have to buy our own essential equipment, that's what the voucher scheme was supposed to do.

Sit on your computer all day and night bidding on ebay for something thats essential for some of us; B s!!!

If your so convinced that's the way to go, then I suggest you get it for him.

I used to look at this site every day; I rarely bother now, but I just looked today and saw this.

Scribbler, I'm confused by your reply.

On one hand you advocate independence of purchase and a non-reliance on social grants (which you practice, and which I support), yet on the other hand you criticise my suggestion?

Yes, we would all like our essential equipment to be provided for free. Yes, it is b-s that people are having to bid on auctions to buy second hand essential mobility equipment. I'm in the even more galling situation where my government charges tax on my wheelchair, so they actually make money out of me buying my mobility! Clearly there is a flaw.

I understand that not everyone can be independent of the social system, but it is a goal worth striving for. Many folk don't even realise that one can in fact make an independent choice and purchase your own equipment, without any red tape and medical involvement.

Your own examples quoted above tell us that independent purchases and management of your disability needs have worked well for you. I would therefore assume that you would encourage such an approach, regardless of whether it is "socially wrong", which is why your closing point confuses me (and possibly the original poster as well).

Edited by HiltonP, 17 April 2009 - 07:39 AM.

[andypool]

Im waiting on the wheelchair service to get back to me with an apointment, as the chair i have now is no good. Its heavy and is no good for what i need.
Going by the replys in this thread, looks like im better saving up and buying one myself. Will see what they offer me in terms of the voucher.
Ive seen some great chairs on the Da Vinci web site

[scatty14]

jane, on Apr 16 2009, 09:14 PM, said:

yep, i went to wheelchair services, they told me what i needed and recommended something, but said i could not have it on NHS. they gave me a voucher for £500. my chair cost £5500. !!, however, access to work funded 80percent of it. so i could continue to work.

Hi again Jane

Cant remember can you walk a little? What made you choose the wheelchair you have ? Did you consider a scooter? Do you drive if yes how do you manage to get the wheelchair into your car. I AM SIMLAR to you c4-c7 incomplete have tetraparesis etc walk just short distance with stick or not at all.
please respond
Theresa