I wrote this post as a draft on 17th June, but chickened out on posting it because I hate to sound like I’m whining. Let’s face it, people that read this want to know about the books, not this sort of thing. But in the end I decided to post it because I would rather sound like I’m whining than have people think I’m simply lazy! There are things happening in my life that are taking away from my work time, and I would hate for anyone to think I simply didn’t care enough to get these books out faster for you guys. Later I’ll write Part 2, because there have been even worse things since then (!) but for now, here are my excuses:
SOMETHING I NEED TO GET OFF MY CHEST – Dated 17/06/14
I don’t think I’ve blogged about anything before that wasn’t in some way related to my books; I guess I didn’t want to become one of these people that use artistic endeavours to push their own agenda. And I didn’t want to bore anybody. But in a way this does affect my writing . . . and it’s simply something which needs to be said.
In 1994 I began to develop what would later turn out to be Fibromyalgia. Although it is impossible to test for a definite causal link, I first became sick after being given the then-new MMR jab in school. These days it’s only given to small children and I believe there have been suggestions that it’s unsafe past a certain age . . . but it was new and I guess they didn’t know that at the time. They gave it to everyone currently in the school system. I was 14.
Over twenty years this condition has gradually worsened to the point that I’m almost entirely bedridden and can only leave the house with extensive help and a very good reason to do so. I’ve developed secondary conditions including Interstitial Cystitis, depression, and Chronic Systemic Candida. I’ve had multiple investigative procedures and biopsies which revealed inflammation sites around my body. I’m in constant musculo-skeletal pain and have to take the full dose of extremely strong Codeine-based painkillers every day to function.
I’ve been getting Income Support for Incapacity for the past eight years, along with the highest rate Mobility Allowance and middle rate Disability Allowance. There’s never been any question that I’m unable to have a regular job of any kind.
And yet, for love and because I can’t stand the thought of being a non-entity contributing nothing to society, I’ve tried to do the only work I can from my bed (get your mind out of the gutter, lol). I’m writing these books. It’s slow and arduous – I can usually only expect 3-4 good hours a week in which to work on them, and I never know when those hours will be. But I take them when they come and write what I can. I only wish I could produce them faster for you; I know what it is to wait for something you want or enjoy, a new book or film, a new album, whatever it is. It’s something that can give pleasure to people and I wish I could do it more often.
But on the other hand, I’m proud of the fact that I’m still trying. I’m not sure many in my position would; you have to really love a thing in order to stick at it when you feel like death! I’ve wanted to be a writer since I was 13 years old and I’m not going to let a little thing like being chronically ill stop me.
But now comes the bad part. You’d think the Job Centre would give me points for trying to do something when it’s already been proven beyond doubt that I’m too sick to be expected to do anything. Right?
This year my Income Support was switched over to the Godawful new system called ESA, or “Employment and Support Allowance” (now there’s a euphemism for you). I had to attend a medical assessment all over again, years after having done it the first time and with a ridiculous number of medical documents to prove I was unfit for regular work. I had to be driven right to the door; have a walking stick to go in; had my mother with me in case I had a bad turn. We know how these people try to trick you, pretending smalltalk and secretly trapping people into saying things that will later be used against them. We were too clever for that. I’m not trying to sound immodest, but we have a recording of the interview and I can say categorically that I made my limitations and the nature of conditions abundantly clear. It only lasted ten minutes. For a while we thought it would be okay.
A few weeks later we received a letter stating that I’d been granted ESA and been placed in the Support Group. Basically, for those who aren’t familiar with the new “system”, there are two groups that can receive ESA. The Work-Related Activity Group is little more than JobSeeker’s wearing an unconvincing mask; they expect you to attend monthly work-focused interviews, get retraining, and attend God knows what else to “help” people who are too sick to work move into work. (As an aside, the idea of my retraining is so funny I can’t even tell you – I’m qualified for half a dozen highly-skilled jobs and if I wasn’t ill I would have any number of options available to me. Again, I don’t want to sound big-headed and I wouldn’t mention it normally, but it’s relevant). Anyway. The Support Group is intended for those with permanent, debilitating illnesses that make them too sick to do any regular work. And this first letter, joy of joys, placed me in the Support Group and advised me of Disability Premiums I might be entitled to.
I must explain here how the post system works in our house. My father, bless him, has a habit of whipping away any correspondence from the Job Centre or the DWP “for safekeeping”. I’m lucky if I get to read it all before it’s gone and up in his incomprehensible pile of junk. Whatever the facts of it, this letter has disappeared somewhere and I can’t find it.
Suddenly on the 3rd June I get a new letter telling me I have an appointment with a Work-Focused Advisor on the 11th, as if I were in the Work-Related Activity Group! I had to call any number of people to explain that there was no way I could get to such a thing and ask what the hell was going on. FINALLY, after several calls, it was agreed I could have the interview over the phone. A result of a sort, but the fact remained that I wasn’t supposed to be having the bloody interview at all. Something had gone desperately wrong.
It was lucky for me that the lady I spoke to on the 11th was actually very nice and tried to be helpful. From horror stories I’ve read this isn’t always the case! She even admitted that the new system was a nightmare and she didn’t agree with it. But that didn’t change the fact that because I was on her list, she legally had to refer me to a company called Avanta, who deal with the Work-Focused Interviews. She couldn’t do anything about the fact that I shouldn’t have been on her list, although she did advise me on how to appeal it.
During the course of this interview she very casually (and luckily!) said something along the lines of “Oh, I hope your CFS gets better.” I stopped her right there and told her I never had CFS, I never told the JobCentre I had CFS. The information they had on file was wrong. In addition, although I had filed (or had filed for me by someone else, lol) my income and expenditure related to my writing (it counts as something called “Permitted Work”) they had NO RECORD of it.
I thought I would have a week or so before this Avanta place contacted me. Wrong again. The next day they called and a real bitch of a woman tried to set up one of these Work-Focused Interviews. I told her, VERY calmly for me, who I have been told am a real demon when it comes to my temper, that there had been a mistake. I had been placed in the Support Group at the beginning of the year and was in the process of alerting the Newcastle Benefits Centre that the information on file was wholly innaccurate, and was waiting for them to straighten out what had gone wrong. As such I was not prepared to meet with her while the investigation was ongoing, and was there any way to delay her interview until I heard back? Grudgingly she advised me to talk to the lady who had referred me to her on the 11th and she could request a deferral from the JobCentre. By now I’m feeling like I’m going to collapse from the stress but I phone the lady I spoke to on the 11th. It’s too late in the day and I’m told she’ll call me back in the morning.
I spent all night awake worrying about it and felt pretty damn bad come morning. When she called at half-past nine she said she couldn’t defer the interview, once it was referred to Avanta it was done. I told her that wasn’t what they told me. This is pretty much the story of any dealings with the JobCentre – they all give you conflicting information and blame everything on another department. She wasn’t quite so friendly this time but eventually she promised to contact Avanta and tell them to hold off. So far they have, but I have no idea how long I’ve got.
We tore the house apart looking for that first letter. And when we couldn’t find it – what I believed was my only hope at that time – I admit I had a breakdown. I’d been crying solidly all morning and at last I exploded. I was screaming that they couldn’t make me go to these interviews when it was their mistake, that I wouldn’t go, that they could fucking do what they liked but I wouldn’t. I think I scared my poor mother half to death! But I was staring the impossible in the face because I knew that to drag myself there was to knock myself out of commission for about a week.
At last Mum suggested I phone the woman in Newcastle that had acknowledged my Permitted Work by letter. We wanted to see if they had a record, not only of my work, but possibly of that first, lost letter.
Cue me waiting yet again for a call back. The moment this lady asked for me I felt better; some people’s voices just tell you instantly what they’re all about, and this lovely woman was . . . I just knew that she could help me.
I explained everything and she did, indeed, have a record of my Permitted Work but not of that first, lost letter. I was pretty crushed by that. She told me I should appeal to be put back in the Support Group but I explained that because I had had no inkling I had been shoved into the Work-Related Group until 3rd June, I’d missed the cut-off date to appeal the decision. They only give you 28 days from when they send you the decision of the medical assessment, but I’d never received any such letter claiming I was in the Work-Related Group because guess what, I’d already had a letter confirming I was in the Support Group! So I’d been afraid that that particular avenue was closed to me and I couldn’t for the life of me see another.
This truly wonderful woman told me it didn’t matter; that I was entitled to appeal it at any time on the grounds that my condition was worsening, and to just send in all the medical evidence I had to the decision makers. I could have kissed her. If God’s ever handing out blessings, I hope he spares one for her.
So that’s what I’ve done. We packaged up every consultant’s letter, every correspondence that related to my DLA and Mobility Assessments, and a letter. I DID use the argument that my condition is getting worse; it’s a degenerative condition, it has no medical cure, and many of the drugs they prescribe to control symptoms can’t be given to me because I’m intolerant. But I also played two other cards in my defence; one, that the DWP still deemed me ill enough to need constant care around the house and unable to leave the house alone, and two, that the information they had based their decision on was 100% incorrect. They had no record of my actual conditions or the medical evidence I’d provided and had instead put me down as having something else. Something they don’t treat as serious, although I would argue that some people with CFS are every bit as ill as I am. But that’s another story.
One of two things has happened here, and whichever it is is entirely the fault of the JobCentre. Either they’ve gotten me mixed up with someone who has Chronic Fatigue Syndrome and is not doing any voluntary Permitted Work, or they’ve falsified my records in order to serve their own agenda. There have been a number of reports of staff doing just that, so I can’t rule it out, but for now I’ll give them the benefit of the doubt and put it down to gross incompetence. What makes me really mad – and if you look back at the beginning of this extremely long post, then you’ll see why I mentioned the MMR – is that if it WAS that jab that triggered my Fibromyalgia, then they’re now failing to support me for something that was their fault to begin with. Oh, the irony. But for now, with my package winging its way to the Newcastle Benefits Centre and the decision makers there, I wait.