An Open Forum for Disibility and Invisibe Illness Awareness

Archive for the ‘Beaurocrasy’ Category

Disability awareness by @HCAuctionsUK

I am a thirty four year old woman who has MS. I was diagnosed in January after being hospitalised because my symptoms were so bad I couldn’t cope any longer. I had to suspend my studies at university – in the hope that I would be able to return in September – and claim for Employment and Support Allowance. I also had to claim for Disability Living Allowance. 

Anyone who has ever claimed these benefits will know how hard it is.

For ESA I had to go through a 45 minute phone call to a call centre, at the end of which I was stressed, humiliated and exhausted. And that was only the beginning.

I was then told that I wasn’t entitled to it because I was still a student. I had a letter from the university which stated that I was no longer considered a student, that I wasn’t entitled to use their facilities and I was no longer exempt from Council tax. 

This wasn’t good enough. So in effect, for one government branch I was a student, for another I was not. How do they figure that one? And why are they allowed to get away with it?

I appealed against the decision. They upheld their original one. I appealed again. By this time it was April. 

Then I had another relapse. A bad one. So bad that I could barely get out of bed. I didn’t want to eat, I couldn’t bear noise or light, I couldn’t even talk on the phone. When I did get up I had to go back to bed a few hours later. If I made it past 7 pm that was a victory. My head felt like it was being constantly assaulted and I was in so much pain I spent all day in tears. I wondered every day how much more of it I could take.

And I couldn’t even cope with opening the post.

So I missed the medical assessment I was supposed to attend.

Two months later when I had recovered enough to open the post, I rang the Jobcentre and told them what had happened, and asked what I could do. The woman I spoke to was very unhelpful and said I should write a letter and tell them what was wrong with me so it could go on the file for the next time I claimed. And she had the audacity to assume I was suffering from stress or anxiety. 

By this time I had had to drop out of uni completely as I couldn’t tell them if I would be well enough to return in September. (As it turned out I wasn’t)

And I faced the whole battle of applying for benefit all over again.  

This time they were satisfied that I was no longer a student and processed my claim, dependent on passing the medical assessment. I don’t know if you’ve ever been to one of these but they are awful experiences. 

Even if you can barely walk and never leave the house you still have to go. I had to take my son with me to lean on as support.

The doctors don’t know much about MS and I couldn’t show them because it’s an invisible disease. There are no scars, plaster casts or broken bones to show them. 

So I was shaking with fear from the moment I got the appointment till the day the result came through. Why? Because someone who knows nothing about me or the disease was about to decide whether I was fit enough to return to work. I knew I wasn’t, my neurologist knew I wasn’t and so did my nurse, my GP, my physiotherapist and my occupational therapist. But their opinions mean nothing to the Jobcentre. After all, what do they know? They are only specially trained medical professionals.

I was lucky, I passed and was finally awarded ESA in May. It had only taken 5 months. I was placed in the ‘potential to work’ category which had me shaking with fear again. Was I going to be forced into jobhunting before I had recovered?

Again I was lucky, my advisor at the Jobcentre knows what the situation and assured me I wouldn’t be forced into anything before I was ready. 

I still can’t help worrying though.

As for DLA, what a minefield. The form is 48 pages long. It took months to fill in. Or rather, it took my friedn months to fill in since I couldn’t hold a pen. It’s invasive, humiliating, exhausting and emotionally draining. How would you like to specify every single thing that’s wrong with you, from your walking ability to your bodily functions? The only thing they don’t ask is what your shoe size is. 

I half expect that next time I have to claim. Because yes, despite the fact that my condition is progressive, the DLA, once finally awarded, lasts only for 2 years. Then I will have to do it all over again.

But at least it was all over.

Except it’s not over. I now live in fear of it all being taken away. Because our ‘coalition’ government – and I say that in quote marks because it’s less a coalition than a takeover of the Lib Dems by the Tories – have decided to cut the welfare bill by focusing on ESA.

There are too many cheats out there they say. 

Despite the figures which go against this, and despite all the evidence that these benefits are so hard to claim that there can be very few people who slip through the net, the Government are determined to punish me and others like me.

They announced a new medical test would be necessary to claim DLA. As if it weren’t already hard enough. The sheer stress of it is enough to put many genuine claimants off. I would have been one of them if I hadn’t had a friend who’d been through the process with her ex husband and was able to help me with it.

People with MS, along with those suffering mental illnesses, will be among those groups who suffer most. Simply because you can’t see what is wrong with us. And if you can’t see it, it isn’t there right?

I now live with the fear that I will end up with my benefits cut and nothing to live on because the Government is insistent on punishing those who are most vulnerable. And then what will I do? If I push myself too hard I make my condition worse. Can you say rock and hard place.

I want everyone to be aware of this, because disabled people are forever overlooked. Their issues are somehow never as important. And the Government continues to punish us. It isn’t fair, it isn’t right and it shouldn’t be allowed to happen. They have to make cuts yes, but not by penalising some of society’s most vulnerable people. 

I am on my way to recovery now, but it’s been a long road – all year – and it’s not over yet. But I constantly have to justify myself because to the man on the street I look perfectly well. I have no idea how to change that but I can try to make people aware online. One of my problems is numb hands. I cannot control my fingers as well as everyone else. As a consequence I make a lot of mistakes while typing. I was always good at English and I hate bad spelling and grammar, yet I now have to deal with it everyday. I spend a lot of time correcting the mistakes I’ve made because I hate making them. It’s dull and extremely frustrating.

So I decided that one way to make you all aware of just a fraction of what I deal with everyday, is to stop correcting them. Only for a day, I don’t think I could bear it any longer than that.

On Friday, October 15th, I will not be correcting myself on here and on Twitter. I hope that it will give you some idea of what it’s like to be me.

 And these sites are just a few that everyone should read. They are sad, angry, frustrating and eye opening. Which is why they need to be read.

Missing Out…. Again by Bendy Girl

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.
 
 
 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.