Someday, somehow, someway...
Goodness life is busy at the moment. It's all great and very exciting and I feel moaning about it makes me sound like a right twat. But, this is my blog and I'll moan if I want to. And also to be fair, I am a right twat. So consider yourself officially warned; moaning ahead.
Alongside the excitement of meetings with the leader of Wirral Council, articles in or featured by The Guardian, the huge success of One Month Before Heartbreak and the BendyVan I can't shake a dual sense of fear and frustration. Fear because what I'm doing is very visible and could lead to accusations of benefit scrounging from those subscribing to the Nadine Dorries school of social welfare, and frustration because work that pays is oh so very close, so close I can smell it, but can't reach it to taste it.
Yesterday I went to get the final adjustments made to BendyVan so I can use BendyBus independently. It's a massive improvement on the mobility situation I previously had so again I feel like an ungrateful scrounging twat to moan. While I was at the mobility place I got to try out the type of wheelchair I've been dreaming about for months - a power assisted chair. Just before christmas I finally caved to the NHS wheelchair services and agreed to be assessed for a fulltime power chair. Actually I only agreed because Roland promised he'd get me a shed and put the wheelchair in it so I didn't have to fall over it in my flat, but that's beside the point. My flat is beautifully compact and well arranged so it's only ever a few steps to anywhere meaning I'd find it much harder to use a powerchair in here as the dislocations from transferring all the time will do more harm than the staggering dislocations. But, as I've been whinging about for years, the NHS regulations for the provision of powerchairs state that only someone who needs to use a chair full time indoors will be considered for one which goes outdoors, and only after using a chair fulltime indoors for a minimum of six months. What you're supposed to do about going to work or in any way having a life during that six months I've no idea and don't even start me on the waiting times. Given that powerchairs are only technically issued to people completely immobile in their own homes it seems a bit bizarre to have waiting lists of more than a week or so. I don't strictly fit into that criteria but if I did it would mean remaining in hospital or requiring a vastly more expensive care package from the local authority while I waited for the powerchair which costs less than both those things. I did say don't start me!
So we all get the picture. I don't want an indoor powerchair, don't need an indoor powerchair and don't see why I should have to further limit my mobility just to comply with an NHS rule. However, I do need an outdoor powerchair of some description. Deathwalks are all well and good but it's not a practical form of getting around and my ability to dislocate any joint without even drawing breath means a traditional manual chair is out of the question. Without a suitable wheelchair that possibility of paid work remains an impossible dream, one of the biggest problems I had when I was working was that just going back and forth to the toilet at work was too much walking. Anyway, back to the point which was that I finally got to try out a power assisted chair and oh my, it was lovely. I'd sleep with it if I could. Or the bloke who was demonstrating it for me, but if push came to shove the chair would win. Sorry sexy wheelchair man.
The big flaw in my dream of making love to power assisted wheels on a regular basis is the cost. Even going with the less expensive version, to get the wheels and a 'not amazing but decent' wheelchair frame is going to cost in the region of £4000. My mobility allowance is already committed to motability so I can't use that and the NHS won't pay for this type of chair. If I was in work I could apply to Access to Work for funding (before it's all cut) but I'm not in work and realistically even if I found a job I could do, with an employer willing to take a chance on someone with a horrendous sickness record, no prospect of improving that and likelihood to be floating round Jupiter somewhere on a morphine cloud most days, to then have to say please wait for me to start the job until Access to Work have assessed me, gone away, made a decision then ordered the wheelchair and it's turned up isn't likely to encourage a job offer. Access to Work were so slow supplying the equipment when I last worked that I'd had to leave through being too sick to work before half of it turned up.
Assuming I could find some way such as charitable fundin around the wheelchair dilemma there are other practical barriers to work. For example today, even though I've got a blinging new BendyVan, BendyBus and BendyHoist I can't use any of it as I don't have enough spoons to control such equipment safely. I don't qualify for local authority care as my needs are classed as 'moderate' a category the majority of local authorities no longer provide support to. I need help with all the basics, washing, dressing, getting around, making food, reducing dislocations and not choking to death being high up the list but those needs are not sufficient for a care package. That's fair enough, times are hard, a line has to be drawn somewhere and although I need help with all those activities to stop me dislocating, falling, increasing pain and overall disability unlike many people I can actually do those activities in my own special 'life on the edge' way.
But I can't do all those things and work. It's one or the other. Times are hard, further cuts have to be made and we all have to tighten our belts. But whatever incentives are put into place, whatever benefits are cut back, no matter how difficult it is to claim, unless these other obstacles change, those sick and disabled people like me who could do some work, who want to do some work will continue being prevented from doing so because these kinds of barriers are insurmountable.
13 comments:
As tough as things are here, they seem even tougher over there. And with your Conservatives in power, those who depend on 'Society' for assistance with their 'day to days' are well and truly fucked.
I so wish I could help.
Keep fighting girl!
I sympathise with your struggle but please, please don't let the bastards grind you down!
Cheers! :-)
I hope that the magic chair fairy grants your wish and you get the power assisted go faster chair that would solve all your chocolate problems. Lol. Great blog, glad you found the time.
:-) Romi
Gaahh! Blo*dy Fs*king WheelChair regs! The cretinous apparatchik that dreamt them up deserves confining to one for the requisite six months in a bed sitter on the tenth floor to see how he likes it. Perhaps if you had a chat with Dave about it, then blabbed to the meeja you might get lucky.
No disrespect to Riven Vincent, nobody should ever be in her position, but I feel deeply for all those who are and who can't appeal directly to Dave to pressure their local providers to spare his blushes. Anyhow back to the point. I had a young mum using a chair to take her two girls the half mile to school each day in a power chair the powers that be had supplied. Then they decided to reassess her and threatened to take the chair away for precisely that reason. Stupid doesn't even begin to cover it. Thankfully they backed down.
Have you thought about pimping out Bendy Cat for cuddles. You'd make the 4K in no time. Just don't tell her I said so ;-)
I've just given you a blog award. Head over to my blog for the details.
You are really good at explaining how the system fails diabled people. I myself have not had to apply for benefits and help as am still fit and healthy (despite being in early stages of Myotonic dystrophy). I don't look forward to the time when I depend on the state. Let's hope people like you who speak out can help make some changes.
Thanks for writing your blog.
Shona
P.S. I won't be offended if you don't want to accept the blog award and the "rules" but I wanted to give it to you as I love your blog.
Ah I'm experiencing the joys of wheelchair services for the first time. First they tried to fob me off with a bog-standard folding manual chair, without having even seen me. When I rang up to refuse the delivery of said chair, they seemed shocked that I wanted to be assessed in person. I now have to be very careful to try and explain my EDS problems without letting on quite how bad my shoulder has been for the past few months. I don't want them to refuse to supply a chair on the basis that I can't push it.
Argh, yes, same situation for me. I keep getting told walking is "good for me" however, even though the agony in my feet keeps getting worse. I hobbled 300 yards yesterday and it took two hours of recovery afterwards. I'm hoping I'll get the High Rate mobility and a car as that will be of benefit to both me and sproggo.
How frustrating.
Bendy Girl - do you need a specially adapted chair? Something out of the ordinary? I ask because I too have had my fair share of insane interaction with OTs and the NHS (they delivered a chair which didn't actually fit through the doors in my house - when I complained, they told me to "just sit in the one room then" - complete madness) So anyway, I started investigating on my own and discovered that chairs are available at a fraction of the cost of those at most mobility shops.
I had to replace my chair in December (long story) and even with adapted stump support and delivery to my door, it cost me just over a thousand pounds - less than a quarter of the price you were quoted.
I bought my first chair from them just over 3 years ago and it received a hammering for all that time - I use it indoors, outdoors and even off-road on occasion, it went to the States with me and on a cruise - so it travels well.
If it's something you think you might want to look into, just say the word and I will pass the info along with pleasure.
Cheers
Terri
Oh the jobsworth joy of making 'those' wheel chair rules.
Obviously a fit person whose never seen further than the end of thei nose. How bloody frustrating.
Thanks everyone! Terri, yes, it's a specialist chair - well, actually just specialist wheels. A suitable frame would cost in the region of £1200 but it's the power assisted wheels which are the cost burden, minimum £2800 new. BG Xx
It's what Shona said that makes you so important, Missy. You have a gift for explaining how the systems fails you over and over again... and for the most stupid reasons.
Keep on doing what you're doing as loudly as possible! xx
I don't think you are a twat by the way.
I as you know haven't even been able to return the calls to wheelchair services. Tip over the edge.. me I mean emotional wellbeing not out of a chair.
At least you can blog about it all I have a severe attack of can't even say how crap the system is for fear of pent up wrath exploding.
The system stinks.
You on the other hand - provide a voice when others like me just can't speak. Thank you.
Post a Comment