I need a new electric wheelchair, the NHS will not provide me with a suitable one that will enable me to leave the house, so I need to buy one, which will cost about £15,000!
I want 2017 to be the year I regain some independence & freedom, I need a wheelchair to improve my life. If you could donate & more importantly share my Go Fund Me page, I would greatly appreciate it.
Below is information about my current wheelchair & more specifics about my particular needs:
I have got a new electric wheelchair from the NHS, after 10 months of waiting. I had been told it would enable me to leave my house but it doesn’t, as you can expect I am HUGELY disappointed. Here I will tell you why it is & isn’t suitable for my needs, the good, the bad & the ugly:
The Good: So there are a few improvements over my last electric wheelchair:
· It has an electric recline function- Meaning I can have the back slightly reclined to enable me to sit up, not flop forwards, as I am too weak to hold my torso up straight at 90*.
· The back is better- As it in on solid piece meaning no longer makes my sacroiliac joints pop out causing bad lower back pain
· It has a headrest where my head is- So on my bad days I can wear my neck cushion & lean my head on it, otherwise I could not hold my head up.
· It has an electric riser function- Meaning I can raise it up to stand up, which is needed for my weak legs; it has helped with the great effort taken to move. When my wrist/shoulder etc. has dislocated it helps as I lift myself up with my arms as well as legs, this has prevented any more sideways fallings over!
· It has a solid seat base- Which is more stable & takes less effort to balance, it also puts less strain on my hips which has so far prevented them from popping out & already reduced my hip pain a lot.
· The seat base is still too short- My thighs are incredibly long & I am told that the NHS does not do any wheelchair deep enough. There is a large gap at the back where my bottom (with its lack of muscle) tries to escape through! I have asked for a larger cushion to try & fill the hole but it will be unstable & far from perfect.
· The back does not support my entire back properly- I have several curves in my spine & being too weak & fatigued to sit up straight means that my spine only makes contact in a couple of places, meaning all the strain is put through those places, causing more joints to come out & more pain.
· I can only use the riser function when stationary- As soon as I engage the riser function (to get higher of the ground) an automatic speed limit turns on making me go as slow as a snail… This is incredibly inconvenient when I need to rush to the toilet & makes maneuvering harder; I have already damaged several skirting boards & door frames.
· As I have to remain lower down to prevent the ridiculously slow speed limit on, it causes further problems- 1) My feet are level with the front wheels, meaning the wheels hit my heels when turning, so I have to have them sticking further out which makes maneuvering more difficult & causes more pain & discomfort. 2) To accommodate my long legs the footplates need to be as low as possible, this is only achievable when engaging the riser mode, meaning I am having to have my footplates too high which causes more pain & makes it harder to balance… If I wanted to only be supported when stationary I would sit in a chair, not a WHEELchair!
· My calf supports do not support my calves- Those black rounded squares are supposed to hold my calves in place when I have my legs up, see next photo as to how inappropriate they are.
· See those little calf supports, not supporting my calves?
· The leg supports are not high enough- My feet need to be in line with my hips to prevent all my blood collecting in my feet & legs & making my go unconscious.
· The leg supports are not long enough- As you can see my legs are bent & I am having to balance for this photo. I cannot maintain this position for longer than a few minutes due to being too weak, not being able to balance; having my knees high causes my sacroiliac joints to pop out & there is too much strain on my ankles which causes my fibula to dislocate as well as a lot of pain.
· The leg supports aren’t articulated- Which, apart from my current ones being too short, explains why I am so scrunched up when my legs are up, also why the calf supports are in the wrong place. With articulated legs, they extend/get longer out with my legs as you raise them up, rather than fighting against my legs wanting to stretch out.
· Here you can see how much lower my feet are than my hips- Which means I would last up to 10 minutes on a good day before all my blood was drained to my feet & I passed out. (For now I am balancing my feet on the front of my seat which takes a lot of effort, makes my sacroiliac joints & ribs pop out & I can only hold that position when sitting still.)
· My unsure face describes how unsuitable the position is for my entire body- I do not have the strength to remain in this position, never mind the fact that it would cause me to dislocate in several places, more pain & to fatigue even more quickly than I already do!
Purple legs- The leg supports was the main thing I was excited about as I need my legs up all the time or all my blood pools in my legs & feet, making them turn purple, & I feel very ill & then pass out… This means at the moment I am on my bed all the time, apart from occasional trips to my bathroom. I had hoped, and been told, I could get this function to enable me to get out of my house; even just being able to go into the garden would be an appreciated pleasure.
Ugly crying- Even though I am in pain & feel very ill with varying symptoms every day I nearly always manage to remain positive but the day when my wheelchair arrived I didn’t. When I woke it felt like Christmas morning, getting a present that would make my life so much easier, less effort to transfer so more energy to use on colouring & chatting and having my feet & legs high enough to prevent blood pooling & be passing out after just a few minutes… I could get out of the house not feeling incredibly ill & faint for the first time in … 3 years?!
As soon as I engaged the foot riser function & was hit with a wave of disappointment. I could tell by looking that my legs were not high enough & that I could not balance with my knees up like that. After a few minutes with the engineer was adjusting my arm rests etc., I had to balance my feet on the front of my seat cushion to stop passing out, and I was crestfallen…. & couldn’t stop myself from crying, ugly crying.
The ugly truth- As soon as I got over the initial upset I tried to problem solve, NHS Wheelchair Services have to provide a suitable wheelchair right? Wrong.
My mum arranged the engineer to come out again to explain the problems with the wheelchair & to remove the reduced speed function… I was told that the reduced speed function could not be changed & that I would have to either be suitably high up & go the pace of a snail or be too low down & uncomfortable fatigued & in pain but go at a reasonable speed… After trying both options I chose the second, the lesser of two evils.
I was also told that NHS wheelchairs are built for the 80% of people, so that for the 10% of tall people, they are simply too small & not suitable. With every point my mum & I raised we were told that there was nothing that could be done. So after thinking my life was going to improve, I was struck with the facts that I would just have to suffer & remain being stuck at home, in bed 99% of the time. We were told categorically that was the best that NHS Wheelchair services were willing to provide…
Which is when we started looking elsewhere at what would be suitable…?
I shall be doing following posts about wheelchairs that I have discussed & tried with non NHS services, I shall not go into too much detail but there is light at the end of a very long, lonely tunnel! Unfortunately the train in the tunnel is very expensive but more information shall follow on that too.