Normality

The first year after stopping work was the worst. The paper work is incredible - and I could barely hold a pen! Not only was I getting and sending letters to my employer, but there were doctors, specialists (based in hospitals which create their own red-tape), the Job Centre (which is the front desk of welfare here), the Department of Work and Pensions, Her Majesty's Revenue and Customs, and The City Council. In each case a have a file an inch thick or more. I had to invent a filing system and be very careful to keep everything. I'm not a natural home filing person!

While all this was happening I was in incredible pain - often unable to hold a tooth-brush to brush my teeth for instance. As my Aussie friend remarked: "must making having a wank difficult!" [urm, yes...] I was also very anxious and swung into depression on a regular basis. I think I'd need a book to write about the various medications I've taken. I was quite lost in the UK system, though I'm not sure I'd have been better off anywhere else and I'm glad I don't live in the USA or India! Dealing with the pain, the disturbed mental states, the massive grief, and the bureaucracy nearly did me in at times. Though of course there are also positive memories of helpful and friendly doctors, and council staff; and of friends who rallied round.

But the over-all effect, looking back, was to create a full-time job managing my health and my connections with the system that was supposed to support me. This aspect of the situation absorbed almost 100% of my energy for the first year or so. Then there were periodic flare-ups.

When you are chronically ill there is a tendency to over do things on good days. It requires pacing, but when you've been at 25% for a while, and suddenly you feel as good as maybe 50%, you tend to forget the new limitations imposed and go for 75% which causes a crash. There are boom and bust cycles. For me the other route into pain is when I'm stressed and physically tense - fibromyalgia means that holding tension, even involuntarily, is painful! And I'm often anxious - any kind of conflict however minor seems to send me into flight or fight without my having much say in the matter! The pain flare ups used to really freak me out. I thought I'm never going to be any better than this. I'm more used to the ups and downs now. I have some long term impairment, some constant pain, but if I manage myself better, then it's all manageable. If I pace myself then my quality of life is OK. I have days when I don't take pain-killers, and I don't take other drugs. I also have days when I take a lot of pain killers, a little valium, and a lot of chocolate!

So this is normality for me. I've gone from being very active in many fields, to dicking about with some writing and doing reception 3 hours a week for a Buddhist Centre. My identify has undergone radical surgery - I'm not longer a musician, or a composer, or an artist, or a photographer, or even a worker: now and probably for the rest of my life I subsist on benefits.

Benefits Culture

Interesting, well written, informative and sensitive blog on the experience of living on a benefit in the UK.

http://benefitsculture.wordpress.com/

IB50 and Incapacity Benefit

IB50

My last blog was on applying for the IB. So finally after five months my reply came. What a relief! I had been quietly stressing that it wouldn't come through. You have to see one of these letters to believe it though. It's four pages of typed information in a non-proportional font (ie probably printed on a very old fashioned line printer) with headings in block capitals, and very little in the way of helpful formatting. All you want to know is approved or denied!! So you do a quick scan of the four pages but nothing stands out - it's just blah blah blah.

So you have to start reading from the beginning and it starts be describing the process which you've just sweated blood completing in case you could possibly forget it! It tells you who gets this kind of benefit. It tells you that you recently (strange definition of recent, but let's not lose focus) filled in an IB50 form and that they have also potentially looked at other kinds of information and what that information is. Then they tell you how they assess your claim, about the points system and how they work out the points system. Then they spell out all the criteria under which you might have met the threshold (physical, mental, both) and then halfway down page two come the blessed words:

THIS MEANS YOUR AWARD OF BENEFIT WILL CONTINUE.

I see now why I missed it the first time - it looks identical to a heading. However there are a further two pages of type to read through. At this point it seems important to at least glance through them because there might be some time bomb in there. Looks like I'm clear of further entanglements till April 2011 which is a relief.

Part of the reason for the extra verbiage is that this is a standard letter for everyone whether or not you've had the benefit before - a lot of the info is only relevant to first timers. Such as several paragraphs on not needing to send medical certificates (I stopped over a year ago) and contacting people about needing to confirm incapacity with employers, unions or insurance companies.

Most of page three is about if you start to feel better you must tell them. Then this, which is classic:

CHANGES YOU MUST TELL US ABOUT

There are certain changes that you must tell us about because they might affect the amount of money you get.

Then it moves right on to the next section. So just 'certain' changes, nothing that needs to be spelled out ;-). Page four is only half used by the MORE INFORMATION section which is about how to contact them (the information is that the information is on the front page), and then how to get general information on this benefit.

Incidentally I notice something on this form which makes me think that my housing benefit got all mucked up because they weren't taking into account my being ill - people on IB and DLA qualify for a higher level of support than others.

For me the benefits rigmarole becomes a full-time job and I can't seem to cope with anything else while that is up in the air. I think it's because I'm totally reliant on it to live and I'm a fucking long way from home or any kind of non-governmental support. When that is uncertain my whole life seems to go to pieces. So I can now focus on rebuilding my shattered life and thinking about how I can participate in society and my community in a positive way. I'm doing some volunteer work - just three hours a week at present - and enjoying it. Perhaps I'll be able to build up to doing more. We'll see.

Applying for Incapacity Benefit

After I had to stop working was a lean period because I did not immediately qualify for Incapacity Benefit (IB). What happened was this. As an acolyte to a religious order I was invited to be ordained on a four month retreat in the mountains in Spain. Yes! The business is run by members of the order and in return for a certain number of years service, and some other minor conditions they not only gave me leave but paid the cost of the retreat. So far so good. I should say that for the five years I worked for them I did so as a volunteer receiving board and lodging and a small stipend – so the retreat was the big payoff. But while I was away they did not pay National Insurance contributions for me and though I could top them up for the purposes of my pension, there was nothing I could do about the IB, and just had to wait until I qualified – about 6 months it was.

Applying for the IB is a nightmare. One fills in an IB50 form in which they want to know every little detail of one’s illness and disability – no detail of your affliction is too small. When one is “mentally ill” (how I hate that term, but that is my designation) one must supply details just as though it were a physical illness. “How does your mental illness affect your life?” they ask. With mental health issues you have to divulge your deepest fears, your darkest moments, your black heart on command to complete strangers in clinical detail in order to be taken seriously – it is grotesque. If I wasn’t suicidal at the start I was by the end. What they don’t tell you, but the Citizen’s Advice Bureau do, is that some drone goes through with a marker and gives you points on the tick boxes – they probably only look at the narrative answers as a last resort and in any case they won’t take your word for it, you have to be examined.

When one is sick it is expected that one will talk openly and frankly about one’s illness to any stranger that the state says one must – they’re paying the bill after all. So I duly showed up for my appointment with the state doctor and the anonymous seventies office block which looked like it had been going cheap. I was anxious to the point of nausea, but I knew that my life depended on this meeting.

When said doctor appeared to call me from the mercifully empty waiting room I was gob-smacked. He was late 50’s and hugely fat. Perspiration ran down a forehead pocked with pimples old and new, and his hair hung limp and oily down the side of his head like a dead fern. This man was going to judge my state of mind and body? Actually this fat and spotty man was very kind and I realised that he had a shitty job that he did with the grace that (older ) English people still often have under difficult circumstances. Don’t get me started on the youth of today.

Anyway he was kind and I am grateful to him. Then after eight months you get a letter with a new IB50 to fill in. Same ordeal all over again. Except that I got my form in by the due date of 27 June, and now it’s October. I’m too terrified to ring them and ask about it because they may well judge me fit to work – this means £25 less per week (which means not being able to afford my psychotherapist) and having to take seriously the idea of finding a job. Who in their right mind, in this performance and youth obsessed world, would employ me? It’s terrifying.

Other perceptions of the IB50 experience

• benefitscroungingscum.blogspot.com

Tips for filling in the IB50.

Disability Living Allowance

Ah shit. Now the UK Govt is looking to save all the money they wasted on the banks by cutting the DLA! Read this

"A government green paper has revealed plans to stop paying disability benefits and hand the cash over to social services instead. The consultation period for the green paper ends on 13 November. If there has been no significant outcry against the plans by then, it seems very likely that whichever party is in power after the next election will seize this opportunity to cut public spending by over a billion pounds a year. Although the actual changes may take years to be brought in, it is what happens between now and November 13th that is likely to seal the fate of attendance allowance (AA) and disability living allowance (DLA)."

Now - join the campaign against it! here >>> Benefits and Work.

Also look at the Social Care Experts blog.

Sign the Downing St petition

Chronic Illness Leading to Being Fired

I don’t work because I'm in constant pain, and suffer from terrible anxiety and recurrent, often suicidal, depression. I used to cope OK but things just piled up. In 2006 I had 8 weeks off with fibromyaligia. I got back, but after 6 months I was in poor shape again and at the same time feeling anxious and depressed. In May 2007 I just had to stop. The first six weeks were sick leave. After that I was on statutory sick pay for six months.

'Work' were anxious not to offend me but completely inept when it came to this sort of thing. They had swung from a laissez-faire approach which resulted in several successful (and expensive) claims for wrongful dismissal, over to an officious and doing it by the book approach. They were of course reading the book for the first time, but were doggedly determined to do the right thing – i.e. make sure that I could not sue them.

After a year it was apparent that I was not recovering. My doctors could offer nothing except pain killers at the time - I was offered opiates at one point but turned them down! Like I need to add addiction to my problems! Antidepressants can help with pain as well, but the side-effects generally make life unbearable - they all send me to sleep. 10 years of amitryptaline nearly ruined my life and certainly cost me my marriage.

So I was called into a meeting. In an hour-long meeting they patiently went through the options explaining the details and the consequences of each. Then they told me that they’d already decided to sack me. Actually it was completely fair as I could not work. But the pretence of having options was a bit surreal, and it was an hour of bullshit I could have done without.

There was still some fall out from this as I rent my room in a communal house from the same charity. But that's another story.

So now I survive on benefits and feel embarrassed about it. I've become quite isolated over the last two years - certainly having chronic illness sorts out who is a friend and who is merely being friendly. Lately I've been doing some volunteering which is good - it gets me out of the house and meeting people. It was almost panic-attack stressful to start with, but I'm learning the ropes now and getting the hang of it. Three hours a week so far. Ironically the guy who trained me on the money side of my job has just been arrested by the police for stealing money and tools from the place. Everyone is struggling with being very angry and remembering that they are supposed to be compassionate :-)

The Council Pay My Rent II

Just received two - two! - BENEFIT DECISION NOTICES, dated one day apart, in the post after having submitted a new letter from my landlord. Got the review I asked for and the result is I'm back to the council paying my whole rent with the amount for bills included. This leaves me with a dilemma. My understanding is that utility bills etc should not be included in calculating my benefit (which is fair enough I suppose). The whole point of my recent decrease in benefit was that they'd been over paying me.

So what to do? I don't have direct contact with the person making the calculation and neither does anyone that I talk to at the council - theoretically the rules are iron clad and just applied by the anonymous drone who makes the calculation. I have very little say in their decisions as I found out a month ago. Then it meant losing £15 a week, this month it means getting that back. I rang up the council to clarify what I'm getting now - it took 30 mins on hold (only the unemployed could possibly have the time to be able to get through to them). I wonder if it was something to do with being on both Income Support and Disability Living Allowance - I think that entitles me to a higher level of support.

A recent appeal court ruling says that Councils cannot reclaim any over-payments that result from a council mistake. See the Daily Mail report: Taxpayer foots £1bn benefits blunder bill as claimants told they don't have to return overpayments (they are not the most sympathetic paper to our plight, but came up first on Google).

My inclination is to keep my head down. I can't say I understand how they operate and every time I have any contact with them I both learn something new and find I was misinformed the last time I contacted them. It's incredibly stressful getting mucked about like this. I have resigned myself to being poorer, and I'm loath to kick off the whole process again if I don't have to.

It's not entirely ethical I suppose, but on balance I think I'm not going to ask them to consider paying me less. It's not a huge amount, and I do not live an extravagant life. It means I can put a little aside for those new winter boots I'll be needing before long.