Today I deathwalked a longer distance than I've been able to manage in 12 months. To say I was jubilant when I arrived home is understating the case, ecstacy would be closer to the truth after a year of injury after injury, hideous Oxycontin withdrawal and many other setbacks, just to get back to a distance I could acheive without as much difficulty 18 months ago is incredible.
I've only been home half an hour and that sense of excitement has been whipped from underneath me by a phone call from wheelchair services. I've written about this dilemma in the past, the rules governing wheelchair provision on the NHS are so surreal Dali would have shaken his head in bewilderment and wandered off to find something not in the 'too hard to think about' box.
My Occupational Therapist at the Wheelchair Centre is a lovely lady and excellent OT. She's known me since I was in nappies and is very saddened by the situation I'm facing, but her hands are tied by the national rules governing wheelchair provision.
The rules state that no-one will be supplied a power chair on the NHS which is capable of being used outdoors until they have used a powerchair indoors for a minimum of six months. A rule, which might just possibly seem sensible in abstract to politicians with no understanding of disability or it's reluctance to be shoehorned into bureaucratic boxes but not to anyone else, particularly not the people falling outside of those boxes and missing out on vital services and equipment.
Living in a very small one bedroom flat with standard sized doorways I could maybe just about get a power wheelchair into my home, but it would only be possible because I'm physically so petite. Given that Ehlers Danlos Syndrome affects the entire body, the demands of getting into and out of a powerchair everytime I needed to move to another part of the flat would be equal to, if not worse than the demands of staggering around the flat, I'd just be trading one set of dislocations for another, equally painful and degenerative set. The additional downside of using a wheelchair indoors would of course be a further, rapid deterioration in my overall condition, leading to more dislocations, more pain and more disability. Remaining a part time wheelchair user is optimum for my physical and mental health, the overall cost to the NHS and the benefits bill, but does not fit within the rules of the system.
| BendyGirl sitting in her attendant wheelchair |
I have an attendant wheelchair, the kind that can only be used if you have someone to push you. It's great, but means I can't go anywhere to use it unless I can find someone who's not busy and is both willing and able to push me around. It's also difficult socially as typically people walk or wheel side by side, and being in an attendant chair prevents that. I suspect it's one reason why small children get so fractious in pushchairs, being unable to see or properly speak to the person pushing you is conducive only to tantrums.
I am not entitled to a standard manual wheelchair as the system recognises that it would be dangerous for me to use one. I could attempt to persuade my GP to risk his professional reputation and a future negligence action by getting him to sign me as fit to use a self propelled wheelchair, but he should no more be put in that position than I should be put in the position of having to lie and say I would use a wheelchair full time indoors. If my GP were willing to claim that I'm capable of using a wheelchair I'm very obviously not, then I could obtain an NHS voucher and purchase a power assisted lightweight wheelchair myself, making up the rest of the cost out of my benefits. That is unlikely to happen, partly because my GP wouldn't deem me fit to use a self propel wheelchair and partly because the kind of lightweight, power assisted wheelchair I would need would be cost prohibitive.
It is possible to use High Rate Mobility Allowance to purchase a powered wheelchair...but not if you're already using that HRM to fund a car. I am currently not using my HRM for either, it goes into general living/travel expenses as I already had a car, but as I need to change my car to a more accessible vehicle, assuming there are no problems with my DLA reapplication the HRM will be committed fully to a vehicle leaving no money for a wheelchair.
So, once again I'm back at square one. There is absolutely no doubt that an appropriate wheelchair would make it more likely for me to obtain paid work. Access to work is the scheme set up to provide specialist equipment to disabled people to enable them to work. Unfortunately one needs an actual job, or concrete job offer to use access to work, and I have neither. The 8 hours a week I'll be doing from my sofa on a voluntary basis absolutely won't count.
I have three options. One; the situation remains as it is now, hopefully improved if BendyBus ever gets it's act together enough to leave the care of mechanics. Two; I lie. To my GP, to my consultants, to the wheelchair centre and claim I will use a power wheelchair full time indoors for six months so that they eventually consider me for a powerchair which works both outdoors and indoors. Three; I try to navigate the maze of charities and beg for funding, unlikely to be secured as EDS is not important enough a condition to have rich and powerful charitable representation.
The years of not being diagnosed and accused of being a liar have left me with a stubborn determination to cling to the truth at all costs. I am just not willing to put myself in a position where I have to lie to the clinicians caring for me, even if that lie weren't completely detrimental to all concerned. I don't have the energy or the mental strength I'd need to go cap in hand to a round of charities, which leaves option one as the only choice.
More than three years on...I'm still missing out.
Also posted as a guest post at;
Shoutaboutit's blog
A Very British Dude