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    Help with getting a suitable NHS wheelchair

    Summary:
    Anyone here got info or tips on appealing against NHS wheelchair clinic decision? (NHS=UK public health care system)

    Details:
    They're saying I only need a basic, hospital type wheelchair. I know from experience that this is completely unsuitable and would increase pain, and impact severely on my independence, energy level and ability to exercise etc.

    People with similar conditions to mine benefit from powerchairs on bad days, and manual on good days. Ideally with emotion wheels.

    But even just a quality active user wheelchair makes a massive difference in my ability to self care, pain reduction etc.

    So to offer just a hospital type wheelchair seems really wrong.

    #2
    The rules are strict. Very strict. Especially on powerchairs. I gave up and had to buy a suitable chair on eBay. I was lucky that I found almost exactly what I needed fairly quickly. I got a bit ripped off but the independence my ZRA has given me was worth it. Try Apparelyzed and Disabled Gear for listings as well.

    Depending on your circumstances it might be more productive to research charity grants and the second hand market than battle the NHS. Have you been offered a voucher? We don't have that in Scotland but I know of someone in England who got a voucher from the NHS and then topped it up to buy a ex-demo model from a dealer.

    Comment


      #3
      Thank you for your reply Travels with Ti

      Re-Buying 2nd hand from Disabled gear.com, ebay etc.
      Ah, that's what I've been doing all these years!

      But the no. of rip offs seems to have increased. I've now been ripped off in 4 out of the last 6 purchases.

      Rusty wheelchairs with bits held on with string sold as ''excellent condition'' (and at excellent condition price too). It took 30 photos to show all the damage that he had hidden by taking only two photos from certain angles.

      Long story short, I was ripped off so much that I now can't afford to move house.

      I managed to get refunds in 2 cases. But both took a long time, and damaged my health. I've not regained what I lost health wise :/ So I still paid the price.

      Was shocked as well that 3 out of 4 rip offs came from fellow chair users.

      I'm wondering how common it is to get ripped off over chair sales?
      (i.e receive a chair that is significantly lower quality or condition than described).

      Re-NHS
      Yes they seem inflexible. I've given up on fighting them several times before because it was taking too long, too much energy. Chairs are not toys that you can wait for. If you need one almost 24/7, you need it now, not in 6 months time.

      But now that I've been almost bankrupted by rip offs. I think I just have to keep fighting them until I win.

      Comment


        #4
        Sadly your system seems as piss poor as ours(nz)

        When buying a chair always check serial numbers etc

        I've just bought a power chair off the net and checked it out first

        Comment


          #5
          Yes it does :/ I get the impression that having an atypical injury and complex health problems makes wheelchair clinic less inclined to invest in me.

          Re-checking out wheelchair first. I dont know quite what you're talking about. What useful info can you get from a serial no. before buying a 2nd hand chair?

          Comment


            #6
            The wheelchair service in the UK is a real post code lottery and one that I've lost, so much so that I don't even contact them any more, I just go and buy what I need.

            The big problem with this is a) you need the money to buy and b) the maintenance costs are your problem, I spent eight grand on my last power chair and it's turned out to be a bit of a lemon!

            Comment


              #7
              I like your bear.

              Comment


                #8
                Originally posted by brian View Post
                I like your bear.
                Thanks I like your moustache, always makes me smile!

                My bear is from the book - Buddhism for Bears (see my signature).
                There's some even better ones in the book, but this was the only one I could find as a jpg for my avatar.

                Comment


                  #9
                  Originally posted by Timaru View Post
                  The wheelchair service in the UK is a real post code lottery and one that I've lost, so much so that I don't even contact them any more, I just go and buy what I need.

                  The big problem with this is a) you need the money to buy and b) the maintenance costs are your problem, I spent eight grand on my last power chair and it's turned out to be a bit of a lemon!
                  Very true Timaru. Even spare parts are often way overpriced. And the fact that they're so rarely interchangeable on different chairs makes things a lot harder. I wonder how much of that is deliberate.

                  Re- Spent 8 grand on a chair and still a lemon. I'm really sorry to hear that A good chair makes such a difference. And a bad chair....well I've felt the beginnings of suicidal ideation when left with only a poorly working /designed chair. It impacts so much doesn't it?

                  Perhaps if disability/wheelchair orgs and charities could start up wheelchair buyers projects?
                  They could have a USA Tech style guide to wheelchairs. A similar one for vendors. And last but not least, a squad of legal advisors/advocates who would help you get what you need from the NHS. Or at the least, they would help you fight your case for a refund on lemon chairs.

                  I've been sold chairs worth £1300 new, that came with budget bearings and single walled back wheels!

                  Would bike manufacturers/vendors get away with charging over a grand for such low quality?

                  Then how can chair co.s get away with it?

                  Maybe we need one of those parliamentary investigations? (agh, I dont know the right term). They look into over priced stuff, like electricity prices being too high.

                  Haven't they forced prices down in some consumer sectors before? So why not wheelchairs and other disability aids?

                  Wish I had the spare energy to start something. But I live and have to cope by myself. I often don't even eat enough so attending regular meetings in parliament is a bit pie in the sky for me right now :/

                  Comment


                    #10
                    Check out WheelChairDriver.com - it is a UK based site, and "Burgerman" the site owner has had much experience dealing with the NHS and WCS types - HE WON!

                    He is the first participant in a pilot program that will supposedly be rolled out to all in a few years where instead of buying you a chair, or giving you a voucher that is only good at a few (overpriced) DME dealers, they give him a lump of cash every three years to spend on his mobility needs. He just has to keep records to prove that he spent the money on mobility and not beer...

                    The site is excellent in other ways, especially for those in power chairs. Lots of very technically skilled users, with tons of experience hacking them to make them work properly... Burgerman actually builds his own chairs (in his bedroom) that IMHO are far superior to ANYTHING the industry sells...

                    ex-Gooserider
                    T-5 ASIA-B para, currently working on building own power chair, as being in a manual is an EXTRA handicap.

                    Comment


                      #11
                      Originally posted by Bear_on_wheels View Post
                      Yes it does :/ I get the impression that having an atypical injury and complex health problems makes wheelchair clinic less inclined to invest in me.
                      Same here

                      Originally posted by Bear_on_wheels View Post
                      Re-checking out wheelchair first. I dont know quite what you're talking about. What useful info can you get from a serial no. before buying a 2nd hand chair?
                      If you have the transport(which I don't due to multiple disabilities and my wanting to be indepent of carers) view the chair and have a test run.

                      What the chair was sold as(so what upgrades have been done) the invacare site also gave me the DMEs name and number so I can get the service history off the DME thats been doing the work on the chair.

                      Sorry been away from Curecare for a view days

                      Comment


                        #12
                        Re- Burgerman's Site

                        Originally posted by ex-Gooserider View Post
                        Check out WheelChairDriver.com - it is a UK based site, and "Burgerman" the site owner has had much experience dealing with the NHS and WCS types - HE WON!

                        He is the first participant in a pilot program that will supposedly be rolled out to all in a few years where instead of buying you a chair, or giving you a voucher that is only good at a few (overpriced) DME dealers, they give him a lump of cash every three years to spend on his mobility needs. He just has to keep records to prove that he spent the money on mobility and not beer...

                        The site is excellent in other ways, especially for those in power chairs. Lots of very technically skilled users, with tons of experience hacking them to make them work properly... Burgerman actually builds his own chairs (in his bedroom) that IMHO are far superior to ANYTHING the industry sells...

                        ex-Gooserider
                        Thanks ex-Gooserider I've checked out Burgerman's Wheelchair Driver site before and agree it's excellent. He's obviously a very gifted, hard working and determined man.
                        But, I didn't spot the part about his victory with the NHS, nor the park about pilot project.

                        Thank you very much for sharing the info here. I will go back and take another look, maybe email him too.


                        Re-his instructions for modding powerchairs. He's a diamond geezer imho for sharing his knowledge.

                        Unfortunately I can't afford the powerchair I need for bad days/trips further afield. NHS will only supply me with one if/when I need it both outdoors always, and indoors.

                        Also, I am currently too ill to learn how to fix and mod electronic equipment. Complete noob in that area.
                        Dunno how I would fund it too on top of manual chair repairs/mods.

                        My only gripe about Burgerman's site is that in parts, he suggests that if you dont mod your own powerchair, you're just a lazy so and so.
                        We're not all well enough to do stuff like that on top of caring for ourselves.

                        Comment


                          #13
                          Originally posted by Bear_on_wheels View Post
                          My only gripe about Burgerman's site is that in parts, he suggests that if you dont mod your own powerchair, you're just a lazy so and so.
                          We're not all well enough to do stuff like that on top of caring for ourselves.
                          There are powerchair users who can't modify(no matter how much we want to) OUR OWN CHAIRS(due to lack of hand function) I hate when people make those kind of statement

                          Comment


                            #14
                            Having at least some abilities and having done at least minor mods on every single chair I've owned, I fall somewhat into Burgerman's class of doing it myself, however he doesn't seem to think that one has to actually do all the work oneself... If you read his stuff in detail, he gets a lot of work done by others - either carer's (he has some interesting approaches to recruiting them as well) or by other outsiders in exchange for "beer tokens" or other consideration....

                            It doesn't seem totally impossible to me that even if somebody can't do the actual work themselves, whether from lack of knowledge / skills, or the nature of their disability, it should be possible to find someone that can - even if it's just a case of pointing at the website and saying "make me one of those"

                            The other thing that is important to note about the site and the information he gives out is that it is what HE finds best for his own needs... He very much emphasizes that what he builds would not work for many people, and that while his ideas are a good starting point, they very much need to be tailored to the individual user. His opinion is that if the user isn't very much involved in the modification process, regardless of who actually spins the wrenches, the result will be less than ideal.

                            ex-Gooserider
                            T-5 ASIA-B para, currently working on building own power chair, as being in a manual is an EXTRA handicap.

                            Comment

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