Let's judge the disabled!

Honestly, I don't really know why I'm writing this post. I feel like I need to warn people I suppose, that's all.

A few months ago I contacted DIAL about my DLA application. I had just been turned down when I applied myself, and had absolutely no income.

There is a huge stigmatism around benefits in the UK at the moment. As such a lot of genuinely sick and disabled people are being declined benefits that they genuinely need. The media has done a very good job of turning every day normal people against the sick and disabled. People who would normally help someone they actually see in distress are begrudging those people the tiny amount of money that they need for simple things like food. People are starving, food banks are at breaking point. Anyway ...

I am disabled. I've spent years trying to deny it to myself, but in the last few years I've been forced to admit it. Even my family, who's had their head in the sand over the fact that I'm ill, has started recognising that I have these problems. I'm disabled!

I have M.E. and Fibromylagia. I am hypermobile and have recurring back problems. I have PSTD and suffer with severe anxiety attacks. I am in constant pain, which is only partly relieved by very strong pain killers. The severity fluctuates; on my best days I can potter about the house a bit, maybe even go for a walk. On my worst days I have to knock myself out for the day to avoid the agony. I suffer with fatigue and exhaustion the like of which you can only imagine if you've actually experienced it yourself. Walking is painful. Remaining in any position for more than 15 minutes is painful. The fatigue means I struggle to meet any expectations placed on me (doctor's appointments, shopping trips, taking medication at designated times, etc). It means that I frequently have problems performing simple tasks or formulating sentences. I'm often mistaken for being drunk. (I don't drink).

Being disabled is hard. Even if you're not disabled, having a long term illness is hard. You have doctor's and specialists whom you try to keep happy. It's human nature to wear a mask, leading people to believe that things are better than they are. That doesn't apply any less to sick or disabled people. If anything it applies more.

So, you spend most of your time trying to put a positive twist on all these difficulties ... and then you have to fill in forms describing how bad things are. It is very hard to make such a huge mental u-turn. You have to scrutinise every little thing you do. For me it includes measuring how far I walk between each tick - because every tick can cause me to fall when I don't have my stick. Before filling in the form I didn't realise how frequently I was actually ticking! You end up learning that you're far more disabled than you thought you were. Really, most of us are actually in denial until we go through this process properly. As such it's very demoralising, and often causes distress and depression.

You can imagine how easy it is for those who wish to commit benefit fraud, can't you. They don't have any of these difficulties to face, just a little research into a condition, tick a few boxes, tell a few lies.

So, as I was saying, DIAL helped me with my recent DLA application. Honestly, with everything else going on in my life at the moment I'd totally forgotten about it (people dying, and my mother having strokes). I was resting in bed, my body is currently inflamed with a Fibro flare, which I have to rest off. At approximately 1pm I received a text from my boyfriend telling me that he'd had a call from someone regarding my DLA application. She told him that she'd been trying to call me, but I wasn't returning her calls. Funny thing: I've not had any missed calls! He took her details and texted them to me.

I phoned her back. Obviously she has an advantage over me, in that she knew where she was phoning from and why she was phoning, both pieces of information she refused to give me. Understandably she needed to ask me security information. Having dealt with the DWP over the last few years, both for myself and for others I'm way too familiar with how this works. She did not stick to protocol. For example, she only asked me my date of birth. Part of that protocol is to ask you which other benefits you're on - anyone trying to fake another person's ID is likely to have checked out their date of birth, address, all the obvious things; asking what benefits someone is on is not obvious, so it's an easy way to catch people out. She didn't ask this. Instead she said to me "You're receiving Carer's Allowance, aren't you!".

When she asked if I was receiving Carer's Allowance, obviously I answered that I am, because I am. She then asked me how. I did not understand this question. She went on to elaborate that my form states that I have zero mobility, and asked how I manage to care for someone if this is the case. She did not give me time to answer. Instead insisting "Do you have zero mobility or not?" Again, she did not give me time to answer, instead moving on to asking me about wheelchairs. She told me that I use a wheelchair when I go out, but that my partner cannot push it, so told me that I must push it myself, despite reading off the form to me quoting a part where it says that I can not self propel.

She kept going like this, not allowing me to get a word in edgeways, putting a twist on everything in a snide smug tone. I ended up raising my voice over her to try and communicate my actual answers to her questions. Obviously, I do not want her twisted version of things going on my record. I do not want to be turned down for DLA again, unless it's legitimately. Plus, I do not want her lies on my record as they will be referred to for future assessments. It's because of a medical assessor lying on an ESA assessment a few years ago that I have these problems to start with.

She told me that my form stated that I have expensive night time needs. I didn't and still do not know what this means. I tried to ask her, but she kept going. By this point I was crying and shaking, so I asked her to talk to my support worker instead of myself. She told me that she doesn't have to do that. I told her that I was officially asking her to. She repeated that she doesn't have to do that. Then, while I literally sobbed the request again to her, she hung up on me.

A pretty bad panic attack followed. I really do not cope well with confrontational situations. I sent a fairly vivid description of what had happened, to my boyfriend, via text, asking her to phone her back again. I also dragged myself out of bed and sent my support worker an email about it, crawling back up the stairs to bed afterwards.

My gripe is this: she knew that I was at home alone, she knew that I was bed bound at the time I was speaking to her, and she should have known that I suffer with extreme anxiety. It was her choice to push me, and deliberately wind me up the way she did.

When my partner spoke to her afterwards, firstly she told him that she wouldn't talk about it with him. She told him that he had refused to answer her questions when she had phoned him previously. This was untrue; she didn't even ask him to answer questions, she'd only said she was having difficulty contacting me. He told her that he had caused a massive panic attack, explaining that he now had to leave work to sort it out. She claimed that she did not know I suffer with anxiety. Every piece of my supporting evidence describes severe anxiety and PTSD. My form mentioned anxiety throughout. She basically told him that she didn't look at either my supporting evidence or my form before trying to contact me.

I suspect she speaks to every applicant in exactly the same way she spoke to us. I also suspect she never reads their information until she's speaking with them, thus causing a lot of anxiety issues for people similar to myself. That woman should lose her job. A position dealing with people who are sick or disabled needs someone with at least a little empathy, particularly if that job requires judging them and being responsible for their future .

So, anyone applying for DLA, please consider yourself warned about the phone call you might receive during the application process. You don't have to put your phone number on the form. Eliminating it will avoid this horrific part of the process.

Shame

I remember sitting in my bedroom as a teenager, and realising how fortunate I was to have been born into this country. We weren't starving, like they were in Ethiopia. We weren't at war, like they were in some parts of the world. We always had plenty of clean, fresh water available, and always had food on the table. Most people had a roof over their head, and those who didn't had help available. We had councils who helped people, unions that helped workers, there were safety nets in place for nearly every eventuality you could think of. We may be struggling in our every day lives, but we had it made! I realised this as a teen, and my ambition became to help people world wide who weren't so fortunate to have been born into a country like this.

Unfortunately, I no longer believe we are fortunate. I feel shame. Total and utter shame, at what this country is doing.

How much of that remains? When I try and tell certain people about the difficulties of being sick or disabled in this country, I frequently get a response along the lines of "At least you're not starving in Ethiopia". Why is it more acceptable to starve here?

Are people really starving here? YES! 

The government has pretty much gone out of it's way to eliminate any form of income for people who are sick or disabled, and have made it very difficult to get by for those who are simply working class at the minimum wage end of the spectrum. If you weren't born with a silver spoon in your mouth they see you as scum, and we are to be treated as we deserve! 

Take my own example. I cannot claim Contributions Based Employment & Support Allowance (CB-ESA), because the DWP (Department for Work & Pensions) paid my NI (National Insurance) stamp last year. Their type of stamp does not count towards benefits, only towards your pension (should you be unlucky enough to live that long). I cannot claim Income Related ESA, because I am living with someone who earns over £8000pa (the threshold is somewhere around 7000). His outgoings are not taken into account. So, the fact that his outgoings are nearly equal to his income is irrelevant. He cannot afford to support me. As such, I am currently living off hand outs. They won't last forever! There is no point at which I can suddenly claim CB-ESA, as while I'm in this situation the DWP pays my NI, thus cancelling out the possibility indefinitely. It also seems that I will be unlikely to receive DLA; the DWP are putting off giving me a decision month after month. My suspicion is that they are waiting for PIP (Personal Independence Payment); under which I definitely will not qualify. There are no other benefits available to me, no safety net to catch me, nothing. I'm not the only one, there are hundreds, probably thousands of people in this situation across the country. The inevitable is that these people will become homeless, probably starving to death.

DLA was never intended for people to live on. It was intended to be some money that helped disabled people live a normal life contributing to the community. Something those who designed PIP seem to have forgotten, despite it's all encompassing name: "Personal Independence". They have made it virtually impossible for people who are genuinely disabled, to claim. For example, one of the descriptors is that claimants be unable to walk 20m, where it used to be 50m. They have cut down the criteria similarly throughout the assessing process, and have taken out some things under which people used to qualify. They've introduced descriptors, suggesting it is now another tickbox computer based system, similar to that of ESA that assesses people.  So, unless you are wheelchair bound, and almost totally unable to do anything for yourself, you're unlikely to receive PIP. Genuinely disabled people will lose their DLA. For many this means losing their car; that is their ability to get to work. Similarly for some it's losing the money they use for public transport. For some it is money used to bring in respite carers. So many people will be very suddenly thrown into situations where life is totally unmanageable.

And yet suicide is illegal.

It isn't just DLA though, please do understand that. ESA has recently changed, making it more difficult to receive again. More changes are being brought in, in April too. At present, when you apply for ESA, if you are turned down you can appeal. You still receive some money (£70pw - the Assessment Rate) until your reconsideration, appeal, or tribunal are finished. The Assessment Rate is being scrapped. You will no longer be allowed to appeal straight away, but must have a mandatory reconsideration first. To be fair, many decisions are overturned at 'reconsidertion', BUT, the DWP has no time limit on how long their reconsideration's take; so people will be left without money indefinitely. They say that they will be processed as quickly as possible. 

No comment.

What happens when someone has no money? Probably first of all, they go hungry. The government has at least seen fit to open more food banks since they've been in power (that in itself shows us that they knew what they were doing to us); but the housebound and bedbound can't get to food banks! And what of those who have specific dietary requirements (I'm talking Coeliac, etc, not vegetarians)? The next thing that probably happens is being unable to pay the bills. The phone gets cut off, then the electricity and gas. Their landlord may be understanding to start with, but if they're sitting in his property not paying any rent, he's losing money, so at some point they get turfed out of their home. Homeless, starving, and ill or disabled. That's what our government is aiming for!

At the moment, most people can claim a Crisis Loan when they find themselves in that sort of situation (not I, due to the other half's income). So what's the government's next step? They're removing Crisis Loans too!

They're also removing Legal Aid for people going to tribunal over their ESA, DLA, or PIP, decisions. In case you're unaware, there is a long convoluted system involved here. If someone disagrees with the decision made on their application (which they usually do, since the DWP deliberately underestimates people's needs), they can appeal. The appeal goes through reconsideration, at which point it can be changed, but if it is not it goes to Tribunal. If they still disagree with the decision then they can take it to the Upper Tier Tribunal. At this level people really need legal advice, and preferably legal representation, if they want to stand a chance of winning their case (they put people through all of that, just for £90pw). And that legal advice will no longer be available; because the government don't want people to win! They don't want to spend their money on the plebs.

There's more. Much more. The so called "bed room tax" for example. I'm so sick of it. It has now got to the point where I think we'd all be better off in another country. If there was a country open to receiving us, I have no doubt that there would be a mass exodus of sick and disabled people from the UK.

I'm actually kind of surprised that there has been no attempt on the lives of any of the politicians involved with all of this change. Yes, by definition the sick and disabled would be unable to carry out such an act, but we're not the only ones who are totally incensed by it all.

I wonder whether they realise that they are backing everyone in to a corner. It's basically going to be a choice between a life of crime, a life on the streets begging, or suicide. All of which are illegal. I suspect it's the latter that they are waiting for, but I also suspect it's the life of crime that most will turn to.

My benefit claims

I've been working on my own benefit claims over the last month or so; ESA and DLA. I have to say that I am sincerely disappointed with the DWP. Until now I had pretty much given them the benefit of the doubt; I thought that the employees were not to blame for how the system works, but as much victims of it as the claimants. Just part of the machine.

I can now categorically tell you that, sometimes, they do not even look at our application forms before making a decision. I realised after posting my DLA form that I had not signed it. I therefore fully expected it to be turned down, with a letter asking me to resubmit it, having sign it. However, what I actually received was a fail based on the medical assessment I had for ESA 18 months ago.

I will point out at this juncture, that the medical 18 months ago was over-turned immediately. It was wrong, the assessor had made unreasonable assumptions based on no evidence, which I clearly illustrated to the DWP as soon as I received her report. I received ESA from a reconsideration, and placed a complaint against the assessor to Atos. (Atos of course defended her).

While it is outrageous that they are using outdated evidence, that is not my point. Had they actually looked at my form they would have realised straight away that they could turn it down based on the lack of signature. They didn't look at it! That is disgusting. Do they have the slightest idea of how much effort, how much energy, how much blood sweat and tears, go into those forms? I severely neglected Christmas preparations because they expected the form back just before Christmas; my waking hours were utilised on the form (plural actually, as I had my ESA50 too). They obviously do not care. I wonder how many people are declined at this stage, not realising that their form has not even been looked at, and not aware that they can appeal. I wasn't aware that you could appeal the first time I was declined after all. No one actually teaches you how the system works.

I can't help thinking that it would save them money if they didn't faff around like this, playing silly buggers. If they actually processed peoples claims properly when they were first sent in, based upon their form and accompanying evidence, surely there would be less need for appeals.

Unfortunately, my experience with ESA is no better. In fact I think I would go as far as to say it's worse. It's a lot more complicated though, so if you cannot follow what I try to explain now, don't worry too much about it.

Whilst getting divorced in 2010 I applied for ESA over the phone. The DWP friendly telephonist I spoke with checked that I had enough National Insurance Credits to claim Contributions Based ESA. My ex had tried to scare me, telling me that I hadn't paid enough of them, which is why we checked, and why it is so memorable that I did have enough of them. (My ex was trying to scare me regarding money in a lot of ways). So, I applied for CB-ESA, got through the application process, and started receiving ESA basic rate.

At the beginning of November I moved into my own flat (call this location A), so changed my address over the phone with the DWP. A couple of weeks later in November I received my divorce settlement. I phoned the DWP to find out if this had any baring on my claim, as I had heard that it could do. I was told that I would no longer receive ESA payments, but that my National Insurance would still be credited. It's a shame that I did not know the system so thoroughly then, as what he told me was wrong and I would have recognised it.

In December I went to stay elsewhere (call this location B) while problems with my flat were sorted out, so I phoned the DWP and gave them the new address again. At that time I was not informed of any problems with my claim.

I moved again in March due to problems with location B, and location A never got sorted out (so call this location C). I contacted the DWP again to give them the address for location C. I was told that they could not change the address on a closed claim. I asked when the claim had been closed, and was told it had been closed in the November, when I had told them about the divorce settlement. I was astounded, as I had not been told in November that he was closing my claim, nor had I received any paperwork to that affect.

When I had returned to location A to check I'd got everything, I found two letters from the DWP; one summoning me for a medical assessment, and another telling me that because I had not attended the medical assessment my benefit would be revoked. They were dated February, and expected me to be at the medical a few days before I found the letters.

So they had screwed up:

• they should not have discontinued a Contributions Based ESA claim based upon a divorce settlement. Contributions Based ESA is not means tested.
• if my claim was closed in November 2011, and you cannot change the address on a closed claim, then I should not have been able to change my address in December.
• when my claim was closed, I should have received paperwork to inform me.
• if my claim was closed in the November, I should not have been summoned for a medical assessment in February.

So, recently, my GP gave me a fit note to cover me for two months. He wanted me to have some income. I wasn't sure what you do with fit notes, so I phoned the DWP to ask. I spoke to one of their helpful telephonists (as opposed to the unhelpful ones), who tried her best to initiate an ESA claim for me, but just could not do it. My record was screwed. Every time she tried to start a claim the computer gave her an error. She probably should not have told me that really. Anyway, she put a request in for me to be sent an ESA1 in the post so that I could fill it in manually and return it myself.

I received the claim pack for Housing Benefit.

I received the claim pack for Carers Allowance.

I received the claim pack for some Disability thing I've never heard of.

Eventually an ESA1 arrived.

On the ESA1 you have to decide whether you wish to claim for Contributions Based ESA, or Income Related ESA. Being aware that my record was a complete mess I thought I'd better check what state my National Insurance was in, so, again I phoned the DWP. I was given a different number to contact the NI Office. I spoke to a lovely man who told me that I have three years of Class 1 credits, should have no problem placing a claim, and that he was disgusted that I was having to do the DWPs legwork for them. 

So, confident that they'd screwed my record up enough for me to claim Contributions Based ESA, I ticked that box. Surprise surprise; I received notification back that I do not have enough NI to claim Contributions Based. I already know I can't claim Income Related because my other half's earnings are above the threshold, despite the fact that his outgoings don't allow him to support me.

I'm stuck in a rut. I have made my MP aware of the situation. She is trying to get my National Insurance sorted out, but I suspect that when it is sorted out it will still not be the right kind of credits to claim ESA. She has also given me a supporting letter for my DLA reconsideration, as she was already aware of my health before any of this happened. 

Over the last few weeks, working on these claims, I have found out a couple of things that people with M.E. may find interesting:

M.E. claimants, along with claimants who suffer from mental health conditions, are given time limit concessions. That means that they are expected to get their forms back a little late. The DWP telephonists aren't actually aware of this, so if you're phoning the DWP to inform them of lateness, you'll need to explain it to them. It's also a good idea to remind decision makers in a note with your claim. I wouldn't advise returning your form late if you can avoid it, and certainly not weeks late.

M.E. is assessed as CFS by Atos. The Atos guidelines for assessing CFS do not tell the assessor what kind of condition it is, but give them the choice as to whether they assess it as a physical condition, a psychological condition, or a mixture of both. Personally, I don't like this. M.E. is recognised by the WHO and NICE as being a neurological condition, with neurological indicators. The DWP is supposed to use doctor's to assess neurological conditions, but M.E. is exempt from this. I was assessed by a nurse. I know others who have been assessed by physiotherapists, health workers, etc. The reason for this is, apparently, that people with M.E. do not show neurological indicators. Well; I know I do. I also know that they are described in some detail on my form. As such I SHOULD be assessed by a doctor, but can guarantee I will not be. 

Honestly, it probably doesn't make any difference. I just feel indignant that M.E. is degraded in this way.

Petition worth signing!

Yeah yeah, I know there are loads of these things going around. Most of them are really naff though, written by someone with half a brain who is angry over something so they've whipped up a really badly worded petition in five minutes, without thinking it through properly. This one is NOT one of those. This one is very well thought through, asks for what we seriously need, and should actually be taken seriously by parliament because of how it is written.

Personally, I have given up on parliament. I think they are throwing out everything that comes their way if it isn't in their interests. I think we no longer have a proper democratic government, but that's a totally different matter. It's worth trying, so please sign it.

Please sign here.

We call for:

A Cumulative Impact Assessment of all cuts and changes affecting sick & disabled people, their families and carers, and a free vote on repeal of the Welfare Reform Act.

An immediate end to the Work Capability Assessment, as voted for by the British Medical Association.

Consultation between the Depts of Health & Education to improve support into work for sick & disabled people, and an end to forced work under threat of sanctions for people on disability benefits.

An Independent, Committee-Based Inquiry into Welfare Reform, covering but not limited to: (1) Care home admission rises, daycare centres, access to education for people with learning difficulties, universal mental health treatments, Remploy closures; (2) DWP media links, the ATOS contract, IT implementation of Universal Credit; (3) Human rights abuses against disabled people, excess claimant deaths & the disregard of medical evidence in decision making by ATOS, DWP & the Tribunal Service.

I am unfamiliar with what an Impact Assessment is, but we do need someone unbiased to seriously look into why the cuts and changes to everything are affecting the sick and disabled so much more than the rich. Asking for the ability to vote on such changes is genius.

In case you are unaware, the British Medical Council voted that the Work Capability Assessment - that scary medical you're sent for if you wish to claim Employment & Support Allowance - be ended. I agree 100% with this request, though am uncertain of how practical it is. There needs to be something in place. Personally I'd appreciate it if they took the ESA50 and medical evidence seriously in the first place.

Again, I agree 100% with ending forced work for the sick and disabled. Personally, I want to work, and I like the idea of gradually being re-introduced to it. BUT I do not think it should be forced upon anyone, and am disgusted that they take away 70% of someone's benefit if they cannot make it to that work. The nature of being sick and disabled means they will be unable to attend at times.

And yes oh YES, please please can there be an inquiry into all of the above. Independent and unbiased. The problem I have with inquiries is that they nearly always find what the government to find though. Either that of the government just ignores them.

A little rant about JSA

In regards to benefits I have mostly written about Employment & Support Allowance (ESA), possibly a little on Disability Living Allowance (DLA), and of course the frustrations of our government and ignorant journalists. As yet, I have not had reason to touch upon Job Seekers Allowance (JSA). It is because I reported, on Facebook, a letter for my doctor regarding ESA, that JSA came to my attention. A friend of mine voiced her frustrations over her experience of the system. Her first reaction made me think that she had fallen for all the media hype, that sick and disabled people do not deserve the benefits they struggle to receive. I was wrong. This is her story:

So, I'll take you back to September 2010. I had just finished my PhD (the end of 7 years at university) and had been looking for jobs all through the summer as the end of my funding approached. I was still with my ex at that point. I had set money aside in the event that I had difficulty finding work, and made these saving stretch far further than I had anticipated. In the September of 2012, I found a part time job in a lab and took it. This ran up until Christmas of that year when my temp contract wasn't renewed due to funding. While I was working in the lab, I took on a second part time Christmas temp shop job to top up my income, and to take me beyond the end of the lab job. When my lab job finished, I rang up the Job Centre to begin claiming Job Seekers allowance as my shop job was under 16 hours a week at that point. I gave details of all my outgoings, including my mortgage etc and I was told that as I hadn't worked continuously for the set amount of time (2 years I think it was at the time), I hadn't made enough NI contributions and so would have to apply for income based job seekers allowance.

In the November of 2012, my ex and I separated but continued to live in the same property until we sorted out where we were each going to live.When my lab job finished (mid December), I rang up the Job Centre to begin claiming Job Seekers allowance as my shop job was under 16 hours a week at that point. The following week I got 17 hours work, and was told by the Job Centre at my assessment that because I had gone over by 1 hour, my claim would have to be terminated, and I would have to reapply again when the time was appropriate and when my hours fell again.

This didn't happen until January when my temp shop contract was also terminated. At this point I rang the Job Center back up again, and had to start my application again from scratch. I had to explain that I was still living with my ex, but that we were financially independent of each other. They held back my benefit until they had sent a representative out to check our living arrangement. This was awful, and made me feel like I was cheating the system in some way when I knew I wasn't. We "passed" this assessment and I was awarded my Income Based Job Seekers Allowance at a mere 8 pounds a week due to the income from my shop job (which was low as it was). I also received council tax benefit (for my half of the council tax, not my ex's half) which was a massive relief and did take a small amount of financial pressure off my shoulders.

At my first visit to the Job Centre to sit down with someone and discuss what jobs I could apply for, I sat down at the desk and showed the man my CV and my qualifications. He looked at my CV and said he had never had to deal with anyone with a PhD before and didn't know how to help me. I had to tell HIM where scientists applied for jobs. He then MADE me apply for a job in Bridgenorth (a long way from Solihull) before my next signing on, the pay from this job was low to say the least, and would have cost me a fortune in fuel, and commuting time too. I simply would have not have been able to live off the wage after paying for fuel. But I put in my application, with the same amount of effort as any other job, and waited. I heard nothing from the company I had applied to.

I got my final pay slip from the shop job at the end of January which I had to take and show to the Job Centre. When they saw this, my massive 8 pounds a week was reduced to zero. The day I received the letter stating this, I was thankfully offered a full time job for 14 months, and had pleasure in telling the Job Centre this, and that the job was not obtained through any help from them.

Now something that I was often asked was why couldn't I claim the full amount of Job Seekers Allowance when a lot of other university leavers could? Simple: many university leavers return to live at home with their parents, or live in rented accommodation where they have no other income, and their housemates do not provide for them financially.

The difference for me? I had a mortgage and I feel I was being penalised for getting my foot on the property ladder and working hard at university to get myself somewhere.

And as for the experience of the Job Center itself? Demoralising. As I sat waiting to be seen, I overheard young mothers boasting of their life on benefits, and how they deliberately put in bad job applications where they bothered to put them in at all, so that they didn't get offered interviews and could continue to claim benefits while they "applied" for jobs. Where they openly admitted to the staff that they didn't bother applying for posts, they were simply told "oh right".

My experience with the Job Centre and the benefits system made me fear for the future. What if this happens again through no fault of my own? Will I get support again? Hopefully now that I have NI contributions, yes I "should" get help short term.

Not so different from some of the problems people on sickness benefits have, is it!?! I had a similar experience myself, in 2001. I finished university in August 2000. I went straight into a job where I was severely bullied by someone who thought she was my boss, but was not. It was a complicated situation; she was sleeping with the MD, so my actual boss could not do anything about how she behaved to me ... or all the other staff before me that she had scared away. I eventually gave up the job after nine months (there had been a book on how long I would last under he apparently - I outlasted all the bets). I tried to claim JSA, but was told that because I had a history of quitting jobs I could not claim. There was no work around at all, so I temped for a few weeks. I handed my CV out to everyone I could think of; went around the shopping centre giving it to all the stores. I eventually got a job in a computers games store. I have never loved work as much as I did there. However, my health was deteriorating with the onset of M.E.. My boss basically told me I'd be better off leaving, so I did. At the time I had never heard of sickness benefits. I went to the Job Centre. I had taken out a £4000 loan a few months previously with the aim of starting up a small business. The Job Centre told me that I had to live on this loan until it ran out, and then I could apply for benefits, BUT that I would not be entitled to JSA if I was ill. The person I spoke to didn't tell me that I'd be entitled to sickness benefits, or that they even existed. So I went straight to my letting agent; paid off the remainder of my rent for the year, all of it. I did my best with the little money I had left after that, but my house-mates ended up supporting me most of the time. Something they should never have had to do.

The system disgusts me. It does not support the people who genuinely try to get ahead in life. Those who try to build a future for themselves, like my friend above. It doesn't support people like her or myself who are simply trying to fill in gaps between jobs. No one explains to us about National Insurance Credits until after it's too late. No one tells you that you can only claim Job Seekers Allowance if you have been sacked; if you quit a job of your own volition you aren't entitled to anything.

My friend is right. There are too many people who think that it is their right to live as they please, with no responsibility to the country or society. They think that they should be entitled to have money, just for being alive. Why should they do anything to actually earn it? I am well aware that this is the view that many people hold of people on sickness and disability benefits, thanks to the media, but people with half a brain should be able to realise that people on sickness benefits are thus because they CANNOT work. The people my friend describes CAN. They choose not to.

This country is a seesaw. On one end you have the tax payers. On the other end you have people on benefits. We are very genuinely at risk of the benefits end hitting the ground. That is what those who choose to not work fail to understand.

Some benefits articles

I am totally exhausted. I've had a number of tabs open on my browser for days, possibly weeks, intending to write about them here. I give up. I'm just gonna give you a few snippets and point you in the right direction. Sorry. This blogger needs some rest!

"The poorest 20% of the 2.7 million households receiving disability benefits will lose 16% of their cash income plus benefits-in-kind, four times as much as the richest 20% of households, according to a report published by the Norfolk Coalition of Disabled People."

Disabled people are ‘collateral damage’ in government’s austerity war new report reveals

Peter was advised to top the amount of Jobseeker’s Allowance up with Income Support. Being ill myself I was unable to advise Peter and to my horror realised that he had a payment of £55 pounds per week for both of us to live on and pay our bills with in our rental property.

Dying man 'has only 12p a day to eat'

Ministers are also examining the idea of ending the annual inflation-linked rise in benefits, though this would require legislation and is a longer-term prospect.

Benefits could be frozen as Osborne tries to save £10bn from the welfare budget

The Department for Work and Pensions, who hired the French IT firm to help them slash the benefits bill, have admitted finding out in a survey that 55 per cent of people who lost benefits in the crackdown had failed to find work.

Benefits bosses admit over half of people ruled fit to work ended up destitute

500,000 to lose DLA

Those of us who have been watching the tide turn are well aware of what switching from DLA to PIP will do. Benefit reform has been brought about partly because the government has painted a picture of those on benefits as being scroungers, malingerers, people who generally don't want to make an honest living ... the lowest of the low.

Public perception is that the benefits system is being reformed because of benefit fraud. Yet, the actual statistic for Disability Living Allowance fraud most recently released was 0.5%. Old Joe Blogs is going to look at the governments statement that 500,000 will lose DLA, and believe that 500,000 people have been claiming fraudulently. As such, I'd like to do a little maths with you.

DLA fraud = 0.5%

In Joe Blogs mind, 0.5% = 500,000

In order for that to be the case, the total number of people claiming DLA would be 100,000,000.

So, dear Mr Blogs, before you jump to any conclusions, please think about the reality of more people than make up the population of the UK being able to claim DLA. The government is not just targeting benefit fraud, it is targeting people who are genuinely sick and disabled, and taking away the little amount of money they rely on.

DLA is supposed to enable people to live a life contributing to society, whether that be by working, or simply by being able to shop in their local stores instead of online. By removing so many people from DLA (or PIP) the system will crumble. People who have relied on Mobility cars will no longer be able to get to work. People who were able to go into their local high street throughout the day will no longer be able to do so ... more shops will close!

It's a small minded way of recovering a tiny amount of money, that could be so easily regained if the big mouths, further up the ladder, actually paid their taxes.

Ministry Of Justice Video on Tribunals

[Taken word for word from one of the benefits groups]:

"Appeals video, from Benefits and Work:

HELP MAKE CHRIS GRAYLING MAD
Here’s an opportunity for you to help make a minister wish he hadn’t interfered.

Back in March we wrote about the Ministry of Justice’s (MoJ) employment and support allowance appeals video (external link) on Youtube. The video was pulled after less than a week, on the orders of senior officials.

Independent benefits expert Neil Bateman (external link), discovered that the video was taken down after employment minister Chris Grayling emailed the ministry complaining about, amongst other things, the fact that it told claimants:
that they are twice as likely to win their appeal if they appear in person rather than having a paper hearing;
that the DWP doesn’t normally send a representative to the hearing;
to send additional evidence to the tribunal, when Grayling wants it sent to the DWP.
Yesterday, three months later, the video reappeared and, to their credit, after their initial panic MoJ officials seem to have left it unaltered. The video is actually reasonably informative and reassuring for people who have no previous experience of appeal tribunals.

Normally, however, MoJ videos get very little attention – one has had just two views and few of the 120 videos on the MoJ channel gets more than a few hundred views.

If Grayling hadn’t intervened this video would probably also have remained largely unseen. Now, however, we’re asking Benefits and Work newsletter readers to make it the most popular video the MoJ has ever produced. The current record holder has had 4,269 views and the ESA video currently stands at 1,063.

So, please, make Grayling mad by taking a look at the video and passing the link on to anyone you think might benefit:"

Can anyone say 'dictatorship'?

A friend of mine spent a couple of years working for VSO in Eritrea. When she came back she described to me a system that I simply could not believe. When Eritreans are young it is decided for them what career path they will take, and they are then lead through the system to that path. They do not have the choice that we do. I was horrified. Ok, so as a teenager I had no idea what career path to take (as a child, I knew I wanted to run an insect hospital), but I would not have been happy for someone I had never met in a government building somewhere, to write down next to my name 'road sweeper', or 'football player'. I can't imagine living in such a society.

Yet, it seems, some of us may be headed in such a direction. Both The Mirror and The Daily Mail have published shocking articles about our countries benefits system in the last couple of days. What is most shocking about them is that both newspapers are actually disgusted at what our government is doing to the sick and disabled. Both have previously played heavy hands in the propaganda against us, aiding the stigmas of 'lazy people' and 'scroungers', so to my mind, if these papers have picked up on how horrific the situation is, it must be seriously dire. (Though the cynic in me wonders if they've just realised they can scandalize a new market of reader).

Taken from Sonia Poulton's article in The Daily Mail:

"Let me be clear. There is nothing wrong with getting hands-on experience that will enable progression in your chosen path, and we've all done plenty of that, but there is everything wrong with being forced to work in a place that has nothing to do with your aims and ambitions and everything to do with creating a labour force that verges on slavery to the system."

"Disabled people will now face the prospect of unlimited unpaid work or they will be subject to cuts in their benefits. For millions that is nothing more than a line on a page but for many terrified and suicidal others, it is anything but."

Obviously, I understand a fair amount about of how the new system works. I am in the WRAG group myself. I had not realised though that I could be forced to take a work placement. When talking with the Job Centre, they conveniently left that piece of information out. Take a look at the job advertisement from Tesco above. The salary is "JSA plus expenses". Many of those commenting on the article are horrified. It is assumed that this is less than minimum wage, slave labour. It may well be, but since the hours are 'to be confirmed' we cannot be certain. I will be looking at similar job advertisements to work this out though. I have always believed Tesco to be a good, even generous, employer, so I am dearly hoping these assumptions are incorrect. That aside, I am still horrified that I, a graduate, who was so looking forward to developing her own career before I became ill, could be told to take a job pushing trolleys, which would very quickly disable me further. What no one seems to have noticed when looking at that job advertisement is that JSA plus expenses is a lot less than ESA plus expenses. Not good!

"We, as the country, are, quite literally, paying the consumer giant to make even more money. And we are doing that by having our taxpayer funded job seekers work free for the company."

It isn't right that large corporations such as Tesco benefit from free workers. If this is how the system works, it is most unfair. I would have presumed that the government would actually be making Tesco pay the worker the equivalent of JSA though. Ever the optimist aren't I.

Taken from The Mirror:

"Neil Coyle, of pressure group Disability Rights UK, said: “The idea that disabled people should work but receive no financial recognition for contributing is perhaps a level of abuse in and of itself.”

"He added: “When Conservative backbench MP Philip Davies suggested disabled people should work for less than the national minimum wage he was castigated. But it now appears to be Government policy.” "

What is perhaps most alarming is how the country, has made such an about turn. As Neil Coyle points out it was not that long ago that that the notion of the disabled working for less than minimum wage was laughed out of the news, and yet it is now a reality. How has the government manufactured this situation? Colour me a conspiracy theorist, but there has been an awful lot of disability hate articles appearing in the media over the last few months. I can't help wondering if these facts are related.

Quoting Sonia's article again:

"If nothing else the Coalition are proving themselves, over and over again, to be worthy defenders of the rich. If you're in the top percentage of income earners in this country then you, too, should be OK."

And this is what most annoys me. Tax breaks. Not just generous salaries, but salary increases. Bonus's. All for the rich, not for those of us at the bottom of the ladder. How can they not care that they are literally taking from the pockets of the poor?

There are three million unemployed in this country. How would you feel as one of those unemployed if you knew that jobs were being made unavailable for you because someone who was sick or disabled was being forced to take the position you could have had, that the company 'employing' them is not paying their wages, and that the person taking the job will probably be made a lot more ill by doing so?

I have one final thing to say on this. I believe there will be an epidemic of sick and disabled people who have no income soon. It won't take many years. Those on contributory ESA (ie, those who have actually paid their taxes to be able to afford to be ill) will cease to receive ESA after one years illness. The government has put a time limit on how long you can be ill for. So, what happens when after a year you are still ill? I have been ill for over ten years now. Many others have been ill nearly as long, or longer than me. Under this system how will they survive? Who does the government think will support them? Care for them? If I was not with C, there would be no one to care for me! Without benefits these people will lose their homes, their possessions; they will end up on the streets.

I would not be surprised if we see people leaving the country. When people realise how dire the situation is, I believe some will take the last of the money they receive or have saved and seek refuge in other countries. I am not suggesting that other countries will support us in the way that we support so many asylum seekers in this country, but that living in a country that is cold, damp, and mouldy is not conducive to good health; those who realise this may well seek a warmer, drier, healthier climate, and simply live on the streets there. I will not be surprised to see English refugees abandoning this country.

I will leave you with some of the comments from Sonia's article in The Daily Mail:

"Sonia writes about the workfare scheme. The ad from Tesco offering permanent night shift positions for benefit (£67.50 a week) plus expenses is reproduced above. This is slavery and madness, and will affect everyone who works for a living by driving wages down even further. Personally, I will not darken Tesco's doors again.
- Jane, Brighton, Sussex"

"Wherefore now, Britannia? Are there no prisons, are there no workhouses?
- Dystopian, UK"

"Well said, Sonia. I honestly think these measures are getting through because people don't really believe it's happening. Soon we will have sick people dying on the streets (having been 'sanctioned' for being too unwell to work for nothing) and unable to pay for healthcare. Councils will keep moving them out of sight. It really IS happening ... And you're right, it's happened before. [... cut]
- Cherry, Herefordshire"

"If people knew the true horror of this they would be marching on the streets on how badly the government spend our money. Take it from me an income for a couple/ person /family of £140 a week and less than £6000 savings very little complicated state help is within your reach.........out of work, sick or disabled it just does nt matter...your ok. £26000 cap is a load of rubbish on benefits if your lucky you have £10 a day to cover every thing. Homelessness yes will be on the rise and they don t want them or people on benefits in the areas like Westminster, NASA cos they are rich.
- Janet, York "

There's a lot more if you want to go and look at them. There are a lot of angry people out there!


[Edit]
Since I wrote this post, Tesco have publicly stated that the advert you can see above was a mistake. I am relieved!

Draft reply to MP

I'm hoping to have more, or better content to put in this letter. I have posted my MPs offer on several M.E. groups. I was expecting to have billions of suggestions, after all everyone keeps complaining about how the system works. Not a whisper! People are so quick to complain, but never actually want to do anything about it. So, here's my reply so far. If I don't have any suggestions by the time I get back from G's (coz I'll not have internet access for the week) I'll be sending it like this:

Dear MP,

Thank you for your swift reply. I do appreciate that your records do not go back to 2003. Thank you for taking the time to look into it anyway. As it happens, since I wrote to you I have received a letter from the DWP stating that they have overturned their decision regarding the outcome of my assessment. They have now placed me in the Work Related Activity Group for Employment & Support Allowance. I still feel this decision is totally wrong, but I dare not rock the boat in case they decide to revoke any ESA at all.

I have included for you a copy of the medical assessors notes from the medical assessment I attended for ESA. It is 28 pages long, so obviously I do not expect you to read all of it. I have given you this for a few reasons. My first reason is personal. I did some reading before attending the medical assessment. I kept seeing reports from people who said that the assessor had lied in their assessment, but I did not believe it. I assumed people were exaggerating. They were not. The person who assessed me has not only completely fabricated ‘evidence’, but twisted things I said, jumped to conclusions, contradicted herself, and worst of all blanked the existence of my back problem all together. When I first read through her notes, I had a severe panic attack, completely losing awareness for twenty minutes or more. I have added annotations to the notes to show how misleading they are. I have tried to remain passive, but it is not easy to do so.  I applied for DLA soon after applying for ESA, not because I want the money, but because I really need a blue badge. DLA was declined me based upon the medical assessors report, which I was in the process of appealing. I was under the impression that DLA could not use the ESA medical assessment for evidence, as they are not assessed by the same criteria. I am disappointed, but too exhausted to appeal another decision. I understand from your letter that you cannot raise my own case with the appropriate government minister; I merely wish for you to see my own case, and understand how misleading the assessment is, and the ramifications it can have elsewhere (i.e. DLA application and my subsequent health).

My second reason is that I am a little confused over how these assessments work. I was not particularly surprised to find, when talking with other people who have CFS / M.E., that our assessments were coming out similarly. However, when speaking to someone with a completely different condition, in a different area of the country, I was alarmed to find that our medical reports are nearly word for word identical. How can that possibly be, unless medical assessors are actually told what to write on reports before they meet clients? I would be happy to gather evidence of how similar these reports are for you, if you would be interested.

Having read the guidelines on how medical assessors are taught to assess CFS, I am very disturbed. Assessors are given the choice of deciding whether CFS is a physical condition, a mental condition, or a combination of both. They are not told what it is! It is classified by the World Health Organisation as a neurological condition; that would make it a physical condition. If assessors aren’t actually told what it is, how are they supposed to assess accurately the condition?

A huge problem with these assessments is that they simply are not designed to assess fluctuating conditions. They should not even be trying to do so. CFS is a relapse remission condition. That means by definition that tick boxes cannot assess it. Obviously, in order to be able to attend a medical assessment in the first place patients have to rest, and prepare; they are only seen at their best. For myself, I can tell you that I tried to rest for two days before the assessment, but actually got no sleep the night before due to anxiety. I was so stressed by the assessment that it caused me to be bed-bound again for two weeks; which meant that I was still in a very bad condition caused by the assessment when I was phoned to tell me that I had failed the assessment. Fluctuating conditions can’t be assessed in a 30 or 40 minute interview; they would require at the very least a day with the person at the assessment centre. The problem then though is that many people with CFS cannot cope with light, or sound, or motion, so they would need a special room in which to spend that day. For this reason it surprises me that home assessments are not permitted, and that letters from the doctors who know their patients best are disregarded.

Another problem with the assessments is that if you do not attend you automatically fail. Yet you are not given a means of contacting the assessment centre to inform them that you cannot attend if you are too unwell to do so. I had this problem a few years ago.

As an aside, I think it is somewhat irresponsible of ATOS Healthcare to have the medical assessors names on the medical assessments that are sent out to patients. People hold the assessors personally responsible for the stress caused, with good reason in most cases. On one of the forums I am a member of I have seen people start to name their assessors. A simple Google search turns most of them up on Facebook or NHS websites. By including their names on the assessments these people are possibly being placed in danger. Perhaps using a reference number for the assessors would be a safer and more sensible option.

The statistics I am reading show that something like 69% of people are failing at the medical assessments. However, if I remember correctly over 40% of those are then reinstated at tribunal. There is a number somewhere in between that have the decision overturned before it reaches tribunal, like myself. And the rest are being placed on Job Seekers Allowance, where the majority of those I’ve spoken to are treated very kindly by advisors who recognise that they are too ill to work anyway. I don’t see how any of this is saving the government money. People either end up with the same amount of money (ESA start rate and JSA are the same amount), or with more money (the rates paid after a successful medical assessment is higher). If the original assessment was more accurate, then a lot less people would need to appeal; every appeal process will be costing the government money. Presumably the tribunals, having three people on the panel, rather than the one medical assessor, are a lot more expensive. The really annoying part of this, is that the only figures that find their way to the headlines are those stating that 69% of people claiming sickness and disability benefits are failing the medicals; suggesting to the general public that 70% of us are fakers. All this seems to be achieving is an unpleasant prejudice towards people whose lives are already very difficult, if not unbearable. I am not sure whether it has occurred to the government that causing people with illness more stress, will make them more ill, and therefore less likely to return to work. To go through this nightmarish process we have to put our lives on hold for months, sometimes over a year; that means putting any recovery on hold, and more often than not taking huge backwards steps because of the stress. I would like to point out that before I became ill, I was earning £15,000 per annum. At the time Incapacity Benefit was approximately £42 a week; would it really be worth my while faking an illness in order to reduce my income by £12,000?

Most people who have written letters such as these to their MPs have received a short letter in return claiming that ATOS are a responsible organisation doing a good job. I’m sorry, but as someone on the receiving end I can’t take that answer. I would like to suggest that if the government is not already doing so, they implement something similar to a Mystery Shopper, to test ATOS. Obviously it would need to be done by people who are genuinely incapacitated. I do not think it would cost the government money, as there are plenty of people who would be more than willing to volunteer.

I think, since I am on my third page to you, that will be enough to be going on with. I am not sure these are the sort of things you had in mind. Just to summarise for you:

-    Medical assessors appear to be fabricating medical assessments, which is a very worrying problem.
-    I think the guidelines on how M.E. / CFS is assessed need to be reviewed.
-    A completely different assessment design is required to assess fluctuating relapse / remission conditions.
-    People asked to attend medical assessments need to be able to contact the medical centres on the day if they are unable to attend the assessment.
-    Medical assessors names should not be on the notes sent to claimants, for their own safety.
-    The statistics are being handled irresponsibly.
-    The process is making people more ill, and causing widespread prejudice within the general public.
-    A Mystery Shopper style test of ATOS would be appreciated.

On a slightly different note, I am wondering whether you may be interested to learn about M.E & CFS yourself. If you have a couple of hours spare next time you are within the Lichfield area, I would very much like to talk with you about the condition. There is so much misunderstanding and confusion regarding it, that it would be particularly useful to have a member of parliament with an understanding.

Kind regards,

Olana Voljeti