ESA assessments pushing mentally ill to suicide

I wanted to write something about this myself, but Sue Marsh from Diary of a Benefit Scrounger has said it far better than I could and so I repost her article here with her permission.


Isn’t it an awful thing when you know all about something terrible, but at the same time you know you’re at least a year or two ahead of general opinion?

Regular readers will know my endless horror at the system of “assessment” in place to now determine whether or not someone is “Fit for Work”.

Run by ATOS, a private company charged with making impersonal decisions, the system uses a computerised, tick box questionnaire of just 15 questions that take no account of variable conditions, no account of consultant or GP based evidence and no account of pain or most symptoms.

Today, the Chief Executives of the most prominent mental health charities in the country have published an open letter in the Guardian, begging the government to halt the deeply flawed scheme because it is costing lives. They are not advising or asking, they are begging.

They rightly point out that “invisible” illnesses are woefully let down in the current system and this includes not just those with mental health problems, but also those with long term variable illnesses such as MS, heart disease, cancer or bowel disease.

In a recent survey, Mind found that an enormous 95% of respondents don’t think that they will be believed at assessment. Evidence abounds of mentally ill people being found “fit for work” simply because they manage to turn up at the assessment centre dressed and washed.

But the most shocking, disgusting shameful part of the accompanying article comes at the end. In a quote from the government, we are assured that

“In consultation with charities including Mind, Professor Harrington is now looking at the way mental health is assessed in the work capability assessment and we look forward to receiving his recommendations later this year.”

How dare they carry on with this until these problems are resolved? How dare they continue to roll out a programme that is costing lives and will claim many more? Why is my blog constantly repeating these points to a society willing to turn away?

Some days I write and I think “Am I the one who’s wrong? Am I the one over-reacting?” and there’s a kind of comfort to that. When the Chief Executives of the nation’s charities are reduced to begging in even stronger terms than I have dared to use, I feel a little desperate.

It’s not just me and http://thebrokenofbritain.blogspot.com/ and the blogosphere and the Guardian shouting about this issue, it’s Scope and Rethink and Mind and even the Professor who designed the system itself.

It must be stopped now, today. These problems must be solved before 1.8 millionmore people are put through this kind of harassment and driven to these levels of despair.

There is clear evidence that Work Capability Assessments for the sick and disabled are costing lives. Please help us to stop it.

** Write to your MP about this by clicking on this link http://www.theyworkforyou.com/ . It will only take two or three minutes, but the Welfare Reform Bill is on the verge of passing through parliament and into the Lords. We simply must stop this and the time-limiting of ESA before it does. The introduction of PIPs as a replacement for DLA must also be halted until further evidence is gathered. If you don’t know what to say, feel free to use anything from my blog – Welfare reform that must not go Ahead is a good summary of the situation.

Beg them. Really plead with them to listen, before it’s too late.

Existing on benefits

Everyone knows someone that they think is a benefit cheat, either because they work while claiming benefits or they do things that they shouldn’t be able to do while receiving sickness benefits, or because they have expensive possessions or a new car.

The thing is, nearly everyone is simply wrong. Some benefits, for example DLA, are paid whether a person is working or not; and many people carry on working as long as possible despite their health problems, so working and claiming sickness benefits is often no indication of fraud. Many people have variable illnesses and can carry out a necessary task, but at massive cost to their health, so what you see them doing is no indicator of “worthiness” for sickness benefits. Many people have TVs and gaming consoles given to them by family, or had such things before going on benefits, or are running up large personal debts to keep up, so what you see in their home is no indication of fraud. Many people receiving DLA get a new car every three years through the Motability scheme, so having a new car is no indication of fraud.

Disability Living Allowance is paid whether the recipient is working or not. DLA is given specifically to make up for the extra expenses caused by living with a disability. My own father receives DLA which pays for him to have a car on the motability scheme. DLA also pays for suitable seating, extra heating bills, easy-to-access food, and other extra costs. My father is still working, and since he only has low paid temporary work, if he has his DLA taken away from him, he would lose his car and be unable to get to work.

As regular readers will know, I have a variable illness. There are days when I can walk to the shops. There are days when I can’t get out of bed or as far as the bathroom. There are times when I go out without using a walking stick but I have to use one to get home. (Staggering all the way.) There are times when I am well enough to ride a motorbike. There are occasions when I have ridden that motorbike for four hours, but then an observer has no idea what I go through after doing that. If someone sees me walk to the shops without a stick, they can’t make any assumptions about what I can do the next day, or even an hour later.

A major flaw in public thinking, and in the Work Capability Assessment, is the idea that if a person can do something once, they can do it again. I can choose to do a task at the expense of a day, a week, or however long in bed. I couldn’t do that task every day. I certainly couldn’t do it all day every day. I can sign my name, but I can’t write a page of text. I can commute to work, once, but couldn’t get home again. I could set up a whole website in a couple of hours in the middle of the night, but I couldn’t do it all day every day for a living, or tell you when I could next do it. Other people with health problems might be able to mow their lawn, put up a shelf or paint a wall, but at a similar cost to their health along with the associated recovery time. Living on benefits, as many of these people do, they are poor. They can’t afford to pay someone to do these jobs necessary in everyday life, and so they do them themselves, and pay the health costs later. Yet neighbours and passers-by see them doing these tasks, and instead of asking “can I help?” they phone the DWP and report them as a benefit fraudster.

580,000 people use the Motability Scheme to get a car, wheelchair or scooter. Getting an appropriate vehicle to allow freedom of movement is the whole point of the mobility component of DLA. If they have chosen a car, they receive a new one every three years simply because the Motability scheme, (which is not government run), makes the finances work by giving new cars to the disabled in return for a chunk of their DLA, and then selling the car after three years to recoup the rest of the cost. Since Motability is responsible for the maintenance of the vehicles too, this works out cheaper than giving people second-hand cars, and also doesn’t leave disabled people stranded when their used car breaks down. And yet many people denounce this as fraud. Why should they have a new car? Well they have one because that costs them less than buying their own used car. It isn’t benefit fraud just because you are jealous of their car.

Then we have the household with electronic entertainment devices. Big screen TVs, games consoles, expensive Sky or Virgin TV subscriptions, smart phones. First off, an outsider won’t know where or when these items were obtained. They might well have been purchased before the owner started to claim benefits. The might also have been purchased later using credit, which is then repaid out of the benefits, which of course means less money for other living costs. That isn’t fraud; it might be unwise spending, and I don’t necessarily agree with that either. In some situations these items are purchased using cash from a loan shark, or from a catalogue or pawn shop with weekly collections of the repayment.

You also can’t necessarily argue that these items are unnecessary. There is a big argument to be made that television is part of our social glue, and that depriving someone of their TV, especially if they don’t go out to work, is just cutting them off from sources of news and entertainment and social connection to the rest of society. I say it is a gross injustice to remove a TV from someone that may not be able to get out of the house easily and may have no other source of entertainment. Equally, a games console is a way of passing the time, and for children might well be important for their social acceptance.

Basically, if someone spends their entire benefit payment on a games console instead of food, that’s not fraud, that’s bad planning. Benefits do not usually come with a specification of what the money can be spent on; in the rare cases that they do, the recipient is given milk tokens, or Tesco vouchers with “Not to be spent on alcohol” stamped on them to make sure that the cashier knows your embarrassing situation.

I know that there are benefit cheats out there. I know that there are people working while claiming Job Seekers Allowance, some of the time managing to live extravagant lifestyles, have mansions, lots of cars, and so on. The thing is, you have probably read about every single one of them in the Daily Mail. They are rare. Those people go to prison, and rightly so. But most of the people that YOU might think are cheats, probably aren’t. You don’t know their details, you don’t know anything about their health, their abilities, their financial situation, or where they got anything from.

Embarrassed to be me

Sometimes I have to use a walking stick. I walk with a stick because sometimes the pain is too much to put weight on my legs, or my muscles are too weak to hold me up, or I am too dizzy and lack the balance to remain upright. I especially need the stick when I am standing still as without it I can fall over due to all of the above.

I hate my walking stick.

I hate it because it is awkward to use.

I hate it because it prevents me carrying anything with that hand.

I hate it because it stops me holding hands with my wife.

I hate it because it is noisy on the pavement.

I hate it because it allows me to walk further when I should stop and rest.

I hate it because it transfers the pain from my legs to my hands and arms and back.

But most of all, I hate my walking stick because it is a symbol of my weakness. It is a sign to anyone that sees it that I am sick. Weak. I feel self-conscious when I use it, because people look at the stick and judge me. Many of them see a thirty-something man with no visible problems using a walking stick and decide that I don’t need it. Some of them assume that I use a stick in order to look sick to get benefits. (Even when I wasn’t on benefits.) Some of them actually question my use of it, and in the worst case, verbally attack me, even swearing at me.

So I leave my stick at home. That doesn’t work out so well, because what happens is that I walk all the way to the doctor, the pharmacy or the shops without too much of a problem apart from stopping to lean on a wall every so often. Then comes the problem. I get tired. I get pain. I am out, ten minutes walk from home, rapidly losing the ability to stay upright, and I don’t have a walking stick. Having to ask for a chair and stop for a fifteen minute rest in a shop is even more embarrassing than using a walking stick in the first place.

I have got around the problem of not having my walking stick when I need it by using a folding stick which can fit in the (large) pocket of my trenchcoat or in my bag. It’s still a pain to carry around so I don’t always take it, but it’s better than never taking it. I can also surprise people by pulling the stick out of my pocket suddenly and having it click together in a most satisfying way!

Given my embarrassment at using the stick, you can imagine what I think about using a wheelchair. I’ve never used one but the thought fills me with fear. Fear of what people will think, especially if I get out of it occasionally when I have no need to be in it. People do not understand that health problems are variable and that it is possible to need a stick or a chair on some occasions and not others. Or that I could use a wheelchair for a journey but walk around inside the building at the end of it.

I was thinking about all of this again because I have been offered an electric wheelchair that used to belong to a family member. My immediate response is NO NO NO but actually that is stupid of me. There are many times when it would be useful to have one, and there are plenty of occasions when I could actually use it to get around the house. There are times at the moment where I cannot get from the bed to the bathroom or the kitchen, and so I go without food and drink until someone can arrive and help me. I will soon be living several miles from my nearest helper rather than next door, but with an electric wheelchair I could get food and drink several hours earlier than I would otherwise. I might even get more hours in the day because I would start to feel better earlier.

I have to learn not to be embarrassed to be me.

 

The benefit claims ordeal

Today I made the major step, to me, anyway, of getting my ESA50 form filled in at last. ESA50 is part of the process of applying for Employment Support Allowance, which should be my income while I cannot work. It is a form where I have to describe in great detail every part of my illness – each problem that I have, every drug that I take, and describe how it affects my life from walking and sitting to washing and going to the toilet. This daunting form has been hanging over me for weeks because I have been unable to face filling it in.

To recap, I have had ME for more than a decade, with all of the resultant problems like extreme fatigue, muscle pain, brain fog, insomnia, all much worse after any movement or activity. I also get frequent migraines, sometimes every day, and have suffered from those all my life. I’ve had diabetes for two and a half years, progressing at a disturbing rate, and a host of other problems as well. All of that combined makes me pretty flaky when it comes to getting anything done and it has ensured that I have a very intermittent work history. I’ve managed to work some years, but I have been stuck in my bed or my house for years at a time too. The last few months have been particularly bad and to cap it all off I started to get depressed about it all. I suppose it isn’t really surprising that I ended up suicidal given all of my health problems plus a sprinkling of my business going down the drain as a result, and imminent homelessness.

Unfortunately filling in an ESA claim form is very difficult for me. The simplest problem is that I can’t use a pen to write more than a sentence before my hand is in excruciating pain. Then there is the problem of concentrating enough to write every detail without forgetting anything or making mistakes. My ME causes severe brainfog a lot of the time and I often cannot concentrate or remember anything. Since it is also important to write problems in a way that correlates to the assesment criteria, most people don’t stand a chance of getting this right, never mind trying it with my concentration problems.

The biggest problem preventing my filling in the form has to have been my depression. Since I became depressed a few months ago I have frequently found myself paralysed by despair, literally unable to move, unable to do anything except focus on despair and on all my problems. Attempting any serious task or responsibility has usually resulted in this state and the ESA form has been the biggest trigger of them all.

It isn’t just filling in the form that has been difficult for me; after I applied I also had to deal with the DWP claiming that my sick note had run out after a week and demanding another one, despite it being for a month, and with them claiming that I hadn’t told them that my wife was working, when in fact they were told at the time that I applied. These two problems added to my mental block on completing the form.

Anyway, the story does get a little bit better. My sister works for a charity that is part of the DIAL network. (Disability Information Advice Line) She pointed out to me that I could get help from my local DIAL and so I gave them a call. My form was already late, and so despite their normal waiting time of six weeks they managed to get me an appointment within two weeks.

Today I met with a lady from DIAL and she went through the form, asking me questions and breaking down each question into small parts that I could answer. She took all the information that I told her and wrote it on the form in a  structure that matches the assessment criteria. She also talked to me at length so as to build an idea of everything that needed to be written in as additional information and wrote a whole A4 page about my illness. Having done this lots before, she already knew a lot of the problems that I face and so I did not have to drag it all out of my brain fog.

Despite all her help, the meeting was two hours long and was an ordeal for me to get through. I had already taken my maximum dose of painkillers to get there for 10am, and spending two hours in a chair in an office at the job centre was extremely difficult. At one point I couldn’t answer her questions any more and I was encouraged to take a rest – I ended up lying on the floor! I stayed there while part of the form was filled in but eventually had to get up which was even harder work and very painful. By the end of the interview I could hardly speak and barely stand but I was helped to stagger back to the waiting car and she even carried my bag.

So after all of that, I have a form filled in with far better answers than I could give, and probably the most accurate portrayal of my illness that has been written so far. (I did actually show her my blog post, A morning with ME, and was told that I should print it out and include it with my forms.) It is a great weight off my mind, or at least it will be shortly when I photocopy the form and finally post it. I will definitely ask DIAL for help with any future applications, assuming they survive government budget cuts.

My next step is to try not to worry too much about my impending Work Capability Assesment.

 

The Hardest Hit – Videos and links

Today several thousand people rallied in London and marched (or wheeled) on parliament to protest against the way the government is attacking the sick and disabled and ruthlessly cutting their income. The Hardest Hit was organised by charities and campaigners working together to mobilise thousands of disabled people to tell the government that this is not acceptable.

[This post contains several videos which will not show up on a Kindle]

Continue reading “The Hardest Hit – Videos and links”

Work makes you free

"arbeit macht frei" - Work makes you free

 

Something is wrong with people in this country. There seems to be a distinct lack of understanding of the realities of being sick. You and Yours on Radio 4 today discussed “The hardest hit” march which will happen tomorrow.  The opinion of most of the callers seemed to be that there are too many disabled people, that disabled people shouldn’t ever spend money on alcohol or going to the pub, or on driving, but should stay in their homes waiting for death.

Never mind that sick people have worked and paid tax and national insurance. Never mind that with help, they might work again. Opinion amongst You and Yours callers seems to have followed the rhetoric of the government and the tabloids and turned against the sick and disabled.

On of the callers quoted that fact that 36% of applicants for ESA drop out before their medical assessment and asked what that tells us. I know what it tells me. It tells me that the process of applying for benefits is obscenely difficult and stressful for genuinely disabled people. That a 20 page ESA50 form demanding that you write out your symptoms and problems over and over again detailing how it affects you is nearly impossible to face. That the likelihood of being judged fit for work by ATOS and their computer system despite obviously not being so is extremely high and puts people off even trying. That the appeals process is long, tedious, draining, and can make an illness many times more difficult to deal with, even though so many people eventually win on appeal. And don’t forget that some illnesses get better and circumstances change!

The attitude of government of all varieties of party is highly damaging. The last government introduced Employment Support Allowance to replace Incapacity Benefit. Where IB only varied based on length of illness, ESA has two groups, the support Group, and the work related activity group. People on the work related activity group are expected to find work within their limits, and eventually to move to Job Seekers Allowance if they do not. Claimants must undergo a Work Capability Assesment which will decide which group they go in, or declare them fit for work and move them to Job Seekers Allowance. The WCA test is administered by private company ATOS and is largely computer based. Staff at ATOS are given a short time to ask the benefit claimant questions and click keywords on the computer depending on their answer. The claimant is asked to make a number of physical movements, and only their completion or failure is recorded, not the difficulty in performing the task or the effects afterwards. As a result many people are declared fit for work when they are clearly not. A high percentage of those people go on to appeal and overturn that decision.

For new ESA claims from October 2008 to November 2009, the breakdown is:

* Support Group – 6%
* Work Related Activity Group – 14%
* Fit for Work – 39%
* Claim closed before assessment complete – 37%
* Assessment still in progress – 4%

(Taken from http://www.abcofesa.co.uk/board/viewtopic.php?f=2&t=75)

Of course many people won’t appeal, but 40% do, and of those, 70% are found not fit to work after all. Unfortunately, it’s not unheard of for people to die while waiting.

The problem I have with Employment Support Allowance is that it changes the whole meaning of the benefit from “We will look after you” to “Go and get a job.” To the people claiming this, it is a huge challenge. People dealing with overwhelming illness, disability or mental health problems may well want to work eventually, but first they need to get away from these pressures and recover. Even under incapacity benefit there was the notion of “permitted work” where people were able to look for work that might ease them back in to the workforce or simply be therapeutic for them. This was sensible. Starting out with the idea that a sick person should simply find an easier job is not.

It gets worse though; in my doctor’s waiting room I saw this poster.

"Fit Note" poster seen in my doctor's waiting room.

The gist is that the government has changed the name of a sick note to a “fit note” because people shouldn’t ever be signed off work to recover, they should simply make accommodations for their illness and carry on. Or get an easier job. I think everyone realises that in reality sometimes people simply need rest to recover before they start work again.

Many people receiving benefits have worked and paid tax in the past, and with the right support may recover enough to find work again, but this vilifying of them by the government and the tabloids will not achieve that. When government ministers quote fictional and misleading figures about benefit claimants, it is clear that they do not aim to help those people.

Just remember, before the Nazi’s started on the Jews, they went after the disabled people, who were the first victims of Zyklon B gas. The motto over the gates of Nazi concentration camps was “Arbeit Macht Frei” or “Work makes you free.” Our current society seems to see people as human only if they fit a certain ideal in the way that they contribute to society. The sick and the disabled do contribute to society, but not necessarily through paid employment. To the government, sick people do not contribute and are therefore less human. How far does this go? Society teeters on the edge between treating people as human beings each worth something or simply writing off those that are not useful to the rich and powerful. How far is our current society willing to go in writing off the sick and disabled?

 

I’m sorry, I forgot.

I’m sorry, I forgot. People that are sick or disabled are supposed to stay miserable as a punishment for being ill. They aren’t allowed any books, games, music, TV, trips or holidays because that might cost the taxpayer money. They must lie in bed staring at the ceiling for the rest of their lives.

Or not.

Someone found my blog today by searching for “should i feel guilty by going to the shops while i am receiving dla”. Someone that I went to school with made a snide comment on Facebook this morning about people who go on holiday while unfit to work.

What is wrong with people? Should illness or disability mean enforced misery as payment for being kept by the state? Is it forbidden for a sick person to stagger to a nearby restaurant or pub if they are having a good day? If they find a bit of extra energy are they not allowed to do the shopping themselves instead of dumping yet another task on their spouse as usually happens?

This attitude, pushed by the tabloids and now by conservative government ministers, is outrageous. Becoming ill cannot mean a complete loss of quality of life, or you might as well just shoot us all now. The welfare system is for everyone whether they have paid tax in the past or not. And most of us have paid tax in the past. Those that haven’t have family that have. What right have the government or society got to renage on the deal? The deal is, we all pay into the system, and when someone has need, the system looks after them. Including leisure pursuits.

Our society disgusts me. People are vilified for simply being sick or disabled. People shout abuse in the street at those using walking sticks or wheelchairs. Those with disabilities don’t dare to push themselves at all, even if their condition varies. Many people are capable of riding a motorbike or mowing the lawn one day but cannot move the next, but if they dare to try anything then they live in fear of a neighbour telling the DWP. (Who don’t understand variable conditions at all.)

All this for a measly 0.5% that are actually faking it. Are you part of the problem? Are you making sick people stressed and setting back their recovery? Are you hurting 99.5% of the sick and disabled because of you unfair prejudice and your sense of entitlement?

Oh, and by the way, DLA is paid to anyone that needs the help, working or not. Of course you shouldn’t feel guilty about going to the shops.