NHS Wheelchair scheme — Scope | Disability forum
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NHS Wheelchair scheme

LegoOCD
LegoOCD Community member Posts: 2 Listener
Hi I am new here and hoping for some advice. I am a long-term wheelchair user, my last 3 chairs from the NHS have been...
Kuschell K4
Quickie Argon
Quickie Argon 2 with Jay 3 back, Jay easy visco cushion and push handles

I've had my current Argon for 7 years and am just about to replace it. The NHS have given me a voucher (personal wheelchair budget as it's now called) to cover the cost of the same spec again. The thing is, I have hypermobility and dislocate frequently (several times a month) especially my shoulders, which both have arthritis in them. I am finding it harder and harder to self-propel. The NHS will not consider allowing me a power chair as I can stand (and walk a few steps) unaided (incomplete spinal injury at T12 - L1. I don't tend to use my chair much in the home I tend to shuffle, scoot and use a posterior walking frame, in all honesty my home is not adapted enough for me to use a wheelchair full time in it so I make do (and cannot afford to move). I also have epilepsy so after seizures there is no hope of me propelling myself I am too tired and in too much pain. I understand their decision but, outside of my home (in the community and at work) I am reliant on my friends and colleagues to help me mobilise in my Argon 2 chair a lot of the time as the hypermobility and arthritis mean I find it hard to self-propel. It is undignified, I feel a burden on them. I want to do my job independently and go out independently.

Has anyone been in this situation and got the NHS to respond better or be more accommodating?
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Comments

  • littleacorn
    littleacorn Community member Posts: 360 Pioneering
    This is so frustrating. How do they expect you to self propel? You metioned you have epilepsy, this might be a reason they will use to not provide a powerchair! Do they know about your declining health? If not ask for a reassesment of your needs. As disabled people I feel we are often not realistic about our needs as we tend to be stuborn and push ourselves everyday. This can be a good thing but on the other hand can be the opposite and we are the ones who suffer either emotionally or physically. It is difficult to admit to yourself that now you cant do as much as you used to or even want to. This is a difficult psycological exercise but well worth it in the end.
  • LegoOCD
    LegoOCD Community member Posts: 2 Listener
    Thank you littleacorn, I really appreciate you replying. They are aware of the epilepsy but it's not the reason they wont give me a power chair. My seizures are predictable and I have a seizure alert dog who gives 5+ minutes notice. As I can get out of a chair independently even with my manual one, I get out and lay on the floor. I have also in the past had a mobility scooter via motability who (as long as it is a class 2 not a class 3 scooter) have no problem with the epilepsy as it is no more dangerous than "riding a bicycle" in their eyes. I can get a power chair on motability but it seems silly when the voucher they have given me (for a manual chair) is enough to cover something like the Quickie Q100! The Q100 is actually cheaper than my current setup LOL.

    They say the reason for no power chair is because I can stand up on my legs. They will only give power chairs to those who cannot stand at all. Which seems to me a bit of a blanket policy. Having spoken to a local shop where I could use the voucher they clearly do not feel manual is right for me. I am going back to try a few chairs out properly (manual!) when their assessor and fitter is in and I am kinda wondering if they will even let me go with a manual once they see the shoulders pop out of joint (which they more than likely will at the first thing that involves a bit of effort - like a fake dropped curb in the shop). But I don't know if they feed this back to the NHS if they will listen or not. The NHS (even though they have not seen me for 7 years) did not offer me a reassessment and even though I highlighted all this on the phone to them emailed me a voucher.

    As I said I could go down the motability route but it seems silly to do that when the NHS have given me a voucher.

    As much as I hate it, I am trying to be realistic for the next 5 years. There is nothing that can be done to fix my dislocations, no surgery or anything just trying to maintain the muscles and stabilise with splints (ankles) so I know a manual chair for the next 5 years is not a good option, making them see that is a totally different thing! I love my Argon it's comfy and a good fit but I hate being reliant on others to push it! I want to be independent at work and in the community. It's degrading having to rely on others when the solution is quite simple and no more expensive!

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