Missing Out...Again
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.
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| 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
31 comments:
Lie! The rules are unfair, so lie. =(Nadine Dorries would be proud!)
I myself am a good citizen who suffers through the unjustices, fortunately, there are people out there willing to help.
IS there anyway you could get one with a letter from your OT telling them the truth about your situation?
Lots of bendy hugs x
"fit to use a self-propelled chair?" I have never heard of such a thing. When I was a child who broke her arms v frequently I couldn't actually push my self-propelled chair, but I had one. I know a hell of a lot of people who can't push their own chair, or can only push it indoors on the flat, etc, but still have a self-propelling one.
And it's not like it's some old fashioned thing that's gone out with health and safety rules: You should see some of the OIers I know who currently have self-propelled chairs! People who still push themselves around with broken shoulders. Hell, I'll even dislocate my shoulder, pop it back in, and carry on pushing. I've pushed myself around with a broken wrist just like I've walked on a broken foot (and actually the former is less painful because at least wheeling doesn't involve weightbearing through the fracture).
My mum was self-propelling her own wheelchair around the cardiac ward during the last 9 days of her life before her heart crapped out entirely, and that was less than 2 years ago.
In short: It seems that someone, somewhere in your wheelchair services is full of bull if they want a fitness to self-propel certificate.
Lisa: My GP would have to sign a referral/prescription for me to get a self propelled chair. They won't do that if they don't consider I could use it safely without further injury. I'd be willing to give it a go whilst dislocating, it's no different from deathwalking after all...
However, my GP's not going to sign something saying I'm capable of self propelling safely when I'm obviously not, probably because they could be held responsbile if I injure myself using it
Chronically Claire: I know, but I just can't lie. It's wrong on *so* many levels, not least of which is the detrimental effect on my overall condition from 'using' a wheelchair full time
Ugh, so far I've only known of the vision requirements for pchairs under Medicare. (I fail that so I have a self-paid manual chair.)
The rules do suck. Both of us are in a horrible situation thanks to the rules and I don't know what to do.
Lying just feels awful and if I were 'caught' I don't want to even think about the fraud case that would go on.
The ability to leave the home is so important for mental health and other kinds of health but it is hard to get people to see that.
My GP would have to sign a referral/prescription for me to get a self propelled chair.
Writing a prescription for something is very different from absolutely stating that something is perfectly safe for someone.
If my GP writes me a prescription for a drug I've never taken before he's not swearing that the drug is definitely not going to give me any side effects whatsoever. He's prescribing me a drug because he knows the probable benefits will outweigh the probable risks.
A wheelchair prescription isn't a guarantee that you'll never dislocate your shoulder pushing it, it's a prescription for an aid where the benefits outweigh the risks. The benefits here are more independence, more likely to find an accessible job. The added risks are negligible (because the chance of dislocating an upper body limb pushing is equivalent to the chance of dislocating a lower limb while walking, therefore the risk with a chair is no greater than without one).
In addition: Generally "there's always someone worse off than you" comparisons are invalid because they're usually not a true comparison and don't take all factors into account. However in this case it is worth reminding your GP and wheelchair services that there are people out there who are much more fragile than you that use self-propelling chairs, even if they can't propel all that much.
Lisa: Like I mentioned in the post, even if I could persuade him to do that, the cost difference between the voucher the NHS would prescribe and the lightweight power assisted chair I'd need is prohibitive.
I could try and persuade them to give me just a standard manual wheelchair but although I'm willing to dislocate using it, in reality I wouldn't be able to self propel any further than I can 'walk' so it's back to square one..
Im with Claire but don't lie, just be economical with the truth. If it's in your flat for six months who is to say whether you have used it to move about or not?
*sighs* I know exactly how you feel. Knowing the rules about powerchairs on the NHS, I may never be eligible to get one, since my shoulders dislocate so easily with EDS that there's just no way I can self-propel.
I get to borrow a powerchair or a motorised scooter from Shopmobility when I'm in town, but if I'm anywhere else and I am too tired or hurting too much to go any further with my stick, I'm fucked. I wouldn't use a powerchair indoors anyway - it's much easier to navigate my flat with my walking stick! And I'll never be able to afford to get a chair not on the NHS, because my HRM goes towards care and utilities, as they decided only to give me LRC (when all my doctors agree that it ought to be MRC - I don't have the spoons to fight it).
The NHS policy on chairs is nothing short of stupid.
Hey honey. At the last HMSA residential, there was a lot of wheelchair envy going on. I think the majority of the bendies had gotten their ultra lightweight rigid self propelled chairs from wheelchair services. There was one girl who had a super snazzy one, which she had gotten from wheelchair services and then upgraded herself with the e-motion powered wheels, which were incredible and she said she's been able to get them for a good deal from ebay. If you email me I can give you her forum name so you can get in touch with her.
I'm currently waiting for my very first appointment with wheelchair services. Should be fun ;)
how about another begging box appeal?
I know people who've fought these 'rules' and won. I also know someone with EDS who was given a powerchair by the Mobility Trust. I suggest writing strong letters of complaint, copied to your MP, and seeing if you can get them to back down (sometimes they do, really). Then move on to charities. There's no reason why you wouldn't get a chair from them just because EDS isn't a 'famous' condition.
Oh - the grounds to complain on are those of health and safety. Keep pushing the fact that a self-propelled chair would harm you THEREFORE you need a powerchair. The person I know who fought similar rules won on the grounds of safety.
I agree with lilwatchergirl - the Mobility Trust is for people who fall through the cracks of statutory services. You match their target beneficiary very well. Get an application in, there's probably a waiting list. http://www.mobilitytrust.org.uk/
From Mobility Trust website:
"If you are in desperate need of a powered wheelchair or scooter and cannot obtain one through statutory sources or afford to purchase such equipment yourself, you can apply to Mobility Trust.
Please write a letter explaining why you need this equipment, giving details of any disabilities you have and the cause of them.
Address your letter to:
Mrs Anne Munn
Mobility Trust
17b Reading Road
Pangbourne
Berkshire
RG8 7LR"
Simples.
Bluehook: Thanks for that, I'll get on to them as soon as I hear back about DLA stuff - not got the emotional reserves until that's out of the way ;) x
Lilwatchergirl: Thanks love! That about sums up the dilemma! Apparently local MP been involved many times to no effect but am going to approach mobility trust once DLA is decided.
Alhi: It may yet come to that, but I'm keeping everything crossed BendyBus will be fixed, at least that way I can get a good idea of how suitable/practical scooter use really is x
Nemonie: That'd be great thanks. Where can I find your email addy?
Good luck with appointment. This seems to be a common problem so perhaps we can start collating people's experiences to present to the ConDems somehow?
Trialia: Isn't it just! And totally contradictory to the independence/work goddam you ethic being shoved upon us all by the politicians
WackyLisa: Exactly!
Joanna: I think it's something to do with a vague sense that sometimes sticking to the truth is more important than anything else.
I'm not confident a power chair is the real answer to my mobility issues, I prefer the easy to wriggle in and out of scooter option, but will see how that goes ;)
Hi Bendy,
I have emailed you with the info. It would be a very good idea to be able to collate all the collective experiences of obtaining a wheelchair appropriate to our needs to send to the ConDems. I'd be very willing to post my experiences on the matter.
What's the exact wording of the rules?
Using a powered wheelchair indoors for six months could mean using it on day one and on day 183 ... no lie there. If they have poorly defined rules just make sure you reach minimum standard. If they're open to interpretation, interpret freely away :)
Checked out hypermobility.org: can touch the floor the way they say (knees straight and hands flat) and bend my little fingers back, but that's it.
Alhi: When I first saw those illustrations I scored myself at about a 3 at the most. We haven't always got a great perspective on how flexibile we are. I know your feet are affected also as your podiatrist picked it up. Can you get someone who isn't a blood relative (as they may well be a bit bendy too) to have a look at the illustrations and your joints and get their opinion...or just send me some photos and I'll check for you?
MikeN: Gawd knows what the actual wording is...dunno if anyone's ever seen it! I'll look into it though..
Bendy
For what it's worth... every time I visit the nursing home where my parents live, I always see at least one OAP resident propelling themselves backwards in a manual wheelchair. I've watched tiny, frail OAP's make slow but sure progress along the corridors, using their feet on the floor to gently propel themselves backwards as their arms are too frail to turn the wheels.
While going backwards, is not ideal, it's better than not going anywhere at all.
Would this be an option for you indoors, using your attendant wheelchair to get around your flat?
I'm sure there must be dozens of manual wheelchairs (bought privately) but no longer needed (RIP ), lying idle in homes all over the country. As you know, they are bulky items to store so you may find someone who's delighted to offload one. It might be worth putting up an advert in your local store?
Steph: My flat is small and well laid out so to be honest using a wheelchair indoors would be more of a pain than it'd be worth. By the time I've dislocated in or out of the chair I could easily dislocate to wherever I'm going. If I ever live in a bigger place it'd be a good option though, thank you
I don't really understand this obsession w/chair services have with the whole indoor thing. Maybe the rules are just to stop us going out in public ;) Xx
Did you know under the new ESA medical anyone who can control his own wheelchair(manual) will be deemed as being mobile, " as if with Legs".
Anyone who uses an electric wheelchair will be deemed as unable to walk, anyone tell me the difference because I've no idea.
Wow, what an incredibly complicated system, and I thought the Canadian view that disability means a person loves to do so much paperwork that they couldn't possible have a job AND do the paperwork for the meds/equipment they need - but the whole not getting that an scooter is indoor/outdoor - I mean, what do they think happens in shopping arcades, or cinemas? Do they think?
I agree with the LIE! Because it must be getting tiring for being beaten for telling the truth - I had a GP in the UK just lie for me, or tell me that 'this is what you are saying' and then write it down - which shows how tired they are of this unrealistic aspect when they are trying to HELP people.
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