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So this weeks' subject for discourse is the NHS Wheelchair Service and in particular my five yearly assessment which I have slightly had my head in the sand about for the last six months.
For those who do not have the pleasure of their services, the NHS wheelchair people as you can probably guess from the title, provide those who they assess as in need the benefit of mobility, either manual or powered, in the absence of a set of decent working legs. They can provide a range of functional but fairly unattractive chairs that do the job but are surpassed in almost every way by the beautifully sculpted but horrendously expensive chairs that are available on the open market provided you have the funds. Which my husband and I don't!
For the last ten years or more I have been deemed by the powers that be in need of an Electrically Powered Indoor/Outdoor Chair or EPIOC and it has been a lifesaver. Prior to my first assessment I was unable to sit well unsupported and just sitting up for any length of time was exhausting. I didn't leave my house without assistance for more than a year. Insisting on a wheelchair assessment and self-referring to the service was a battle on it's own but after a whole year of arguing my case and sitting indoors bored and frustrated I finally had the assessment and was granted a chair.
Getting my first EPIOC was so brilliant. I was in that chair and out of the house as fast as my chair could carry me. It was exhilarating, but at the same time terrifying!!!
I was a very different person to the one I'd left behind the year before and my confidence was at rock bottom. I was now living life from a hugely different perspective, and it was painfully obvious while I worked out how I was going to access the world those first few times I went out.
Fast forward ten years and two chairs later and after many years of hard work and pushing myself forwards and sometimes backwards I have gained enough strength in my trunk, arms, hands, and legs that for short periods, I am able to stand, takes steps, and sit unaided, hence my slight reluctance to attend the new assessment.
I have, for several years now, had my own back up chair that we bought ourselves out of necessity. You can only have one chair on the NHS. It is a manual chair and I am still stuck indoors but it enables me to leave my bed in case of the EPIOC breaking down, which happens with alarming regularity.
Over time, and in conjunction with the improvements I have made to my physical condition, I have taken to using this chair more often. At first only indoors, pulling around on the furniture, as moving the chair, even on a really smooth surface is hard when you can't grip the rims. But increasingly, and also now that I am working as well, I am going out with only the manual chair in the car. As long as the place I am going to has a smooth surface, i.e. a shopping centre, hospital, or I've been there beforehand to assess the surface. I have a feeling of freedom in the lighter chair in that I am more manoeuvrable, can see around me better, am being physically more active and I increasingly feel that I am seen by other people as more able, capable, compos mentis if you like, and therefore more approachable and therefore perceived in a different way. This, so far is all good stuff.
However, I am not able to grip the rims, particularly the left. So, I can't move far on a tarmacked surface, any kind of camber, uphill, or down (in safety). Or more accurately I can if I'm leading with my right but not my left. It doesn't sound so bad until you have to do it. Uphill, I can push one wheel, apply brakes, push the other, apply brakes, and repeat ... over and over and over. Or, I have discovered, I can make it to the village green 100 yards away from my house, but .... all the pavements are cambered ... so I can get there, but I can't get home again. I never even thought of the rain running off the pavements until then. Asking strangers to push me home is definitely not part of my game plan!
However, I am also still very independent. Ferociously so sometimes! Often to my detriment!! Try as I might I am not able to move my chair over grass, or off-road, and I have not even considered taking my assistance dog to the woods for a nice afternoon stroll under the trees, all of which I will need to be able to do on a daily basis. If I need to use public transport for any reason then all of these things require my EPIOC to get me to where I need to be.
So, with all of this in mind, last week my five yearly wheelchair assessment came around and I was so pleased to be able to go in and report on the issues I was having. To ask for input into remedying these little issues with the manual chair. I want to be able to use it more often. I want to be physically active and to be seen as approachable and capable by the world in general. I took all the things I had tried with me - chairs, leather gloves, rubber rim covers, etc, etc.
The only thing I took away with me was the edict that I have improved so much that I will no longer qualify for an EPIOC!
To be continued…….
Blog by Heather Farley
Ability Today Volunteer