JOBCENTRE WRAG-TIME a poem

I went to the local Jobcentre

With painkillers, stick and bag

I had to go, fearing sanctions

Cos I've gone and been put in the "WRAG."

It makes me feel poorly on buses

But with hypos I mustn't drive,

So I stumbled in all of a-tremble,

And barely a quarter alive.

It took me all my precious "spoons"

To balance and to breathe,

I had to watch the pavement

As it starts to shift and seethe.

My 80 year old mother came

To help me open doors

Which invariably seem to stick

Defying gravity's laws.

My appointment was half past eleven,

Though I hadn't slept night after night.

My legs felt as wobbly as rubber

I was sickened by motion and light.

But the Jobcentre seemed rather quiet

With everyone there in their place,

No loud noises were blorting to hurt me

Which was abso-bloomin-lutely ace.

A lass who was wearing a label

Which I guess spelled out her name

Started asking me what was my business

And the reason that I came?

I explained I'm in the “WRAG” group

And I had to meet the girl

Who's my “Personal Adviser”

Who I'll call, for rhyme's sake, “Shirl.”

She looked me up, she looked me down,

She showed me to a chair,

Where in pain I tried to balance

Near to others who were there.

Some were reading adverts,

While others filled in forms,

Some jiggled kids in pushchairs

While others stifled yawns.

But everyone seemed friendly,

Efficient, polite and calm,

And as I got my breath back

One young woman touched my arm.

She said my name and greeted me

And helped me cross the carpet,

Pulled out a chair to help me

Cos by now my “spoons” had scarpered!

She reassured me from the off

She wasn't there to press me,

ATOS had done what ATOS do,

Here no one would undress me

Or frown and say “M.E.? What's that?”

You look fit as a fiddle!”

She listened and she understood

(Not influenced by Rod Liddle!)

I didn't wear my dog-collar,

So I was a bit astounded,

She knew the kind of help I'd need,

Advice was wise and grounded.

She tapped on her computer screen

To calculate & compare,

If work from home might pay at all

What hours, what skills to share.

She knew from my work history

I wasn't one for shirking,

She knew that were I well enough

I'd much rather be working.

She totted up the hours

I could work or volunteer,

On top of what I manage now,

If better health were here.

She built on what my skills are

To make helpful suggestions,

She let me pace things as we talked

And answered all my questions

She learned about my brainfog

And saw it one-to-one,

She's the face among the faceless,

I was really glad I'd gone!

I asked if I had to see her

Every month from here on in,

She said it would not be needed,

(My knees must've met my chin!)

I could call her number any time

For any advice at all,

It should be another year or more

Till my next medical call.

She was honest about W.R.B.

And all the uncertain changes,

She well understood her clients' fears

And the future's scary dangers,

So clued up and supportive,

She went out of her way

To fetch me a pack to make a claim

If needed, for DLA.

Since then I've heard two other friends

At different JCPs,

Have also had this kind of help

In different degrees.

Although it took days to recover,

From this trip to the “bowels of hell”,

I consider myself very fortunate

I've a positive tale to tell.

Before you say, “yes but, no but,

ESA's just for a year.”

I must meet that bridge when I come to it,

I'm thankful for now and here.

For now, I was saved an unequal fight

To be put in the group for “support”,

Not terminal ill, not yet a corpse,

I guess I've been put where I ought.

I know the harsh rules of D.W.P.

Won't find me a miracle cure,

With their strict time-limitation,

But the future is seldom sure!

We can only live in the moment,

And fight on for those with no voice,

Play fair even when we've been diddled,

Or grow bitter and bolshy by choice.

Back at home I was soon reminded,

How true were the things we'd discussed,

How far I am from “fit for work”

The adrenalin soon repercussed.

I slept till the daylight was dying,

As body and brain disengages

With the payback from that short journey

I just couldn't function for ages.

But at least one Jobcentre employee,

Understands disability more,

Has more now of M.E. awareness,

It won't stop me fighting injustice,

With others whom ATOS have harmed,

But I went to the WRAG, and I learned some,

As with all things, forewarned is forearmed.

Shuttlecocks and Shattering Shocks

BBC News: Is the new disabled work benefit working?

I don't hold out much hope for this programme tonight. I don't get a good feeling from this BBC preamble by Helen Grady.

An M.E. sufferer who is "one of the country's top wheelchair badminton players" and "a regular at live action role-play festivals"? Some mistake in the report? Some mistake in the diagnosis? I don't pretend to know.

Perhaps it's just my ignorance. I thought being top at badminton must mean you can do more than apply yourself in "short bursts". I know shuttlecocks are light pieces of equipment. Badminton isn't squash. But even from when I played it very occasionally years ago, before M.E.completely shut down my neuro-immune system, I know it's one heck of an energetic game. Far beyond anything I could manage now. Is it just because I'm now 50, having suffered M.E. in remitting-relapsing deteriorating pattern since at least my 20s, and the M.E. sufferer in the above-linked article is still only 27?

I sat talking to visitors today. Sat slumped, propping my head to help my neck to support it so as not to appear rude or bored. Two low-maintenance dear old friends this morning who did most of the talking. One dear old friend this afternoon, to whom I showed a slide show of photos on the laptop as we chewed over some family history brick walls, a shared interest that brought us together. My Mum even stayed long enough to make the tea for us to save me some extra "spoons".

Now I am utterly crashed. Head spinning. Throat hurting and hardly any voice left. Wrists too sore to type for long. Eyes blurred. Unsteady. Ears singing. Heart palpitating. Feverish and shivery. Nausea and pain making eating tea difficult. Forgetting my words. Exhausted to point I need to sink down right here on the carpet, if I didn't risk not being able to get up again. Hot and cold by turns because my autonomic nervous system is completely up the spout.

Even without badminton or any outing today, many things with M.E. are way out of bounds now to me. Co-ordination, concentration and strength to drive, for one (though diabetes type 1 with no hypo warnings rules that out in any case). Badminton or any strenuous sport, for another. Self-propelling myself in a wheelchair for yet another. Even carrying and using my walking stick is making my hands, wrists, arms, shoulders and chest unbearably sore this last week.

A dear family member, also diagnosed with M.E. much younger than me, who got treatment right away, does drive now, does some teaching and plays some tennis and does some cycling. So I know it's possible, in remission. But she is always aware of her limitations. At her worst, she has the huge frustration of knowing she can't keep it up, either safely, or at all.

I have to lie down, now. I can't say more about this today. I refuse to whine. I won't criticise. But I fear the backlash here, yet again, from people convinced that with full-blown M.E. we are all fit for the Olympics and driving from Land's End to John O'Groats on a regular basis. We are patently not. Not all of us. That's all I know. Am I living on a parallel planet? ATOS are sponsors of the Paralympics. Is this propaganda for them?

No doubt I need to shut up, rest and listen to the programme with an open mind, if  possible, even if with a pretty foggy brain!

I doubt after my little goals today I'll still have the concentration to listen reliably. Neither the concentration, the stamina or the heart. Not in Christmas week. Not when the tiniest unexpected, even delightful moment, can soak up the last bit of energy and health at my fingertips. Not while we're still reeling at the news that renowned and tireless diability rights campaigner Sue Marsh (if only poor Sue was really able to do all she does and not be made disablingly sick and tired!) joins the legion of genuinely very sick and disabled refused help: Guardian: Comment is Free: Sue Marsh: No disability living allowance for me. Nowhere to turn for many more

The description of tonight's programme runs:-Can You Touch Your Toes, presented by Anita Anand, will be broadcast on BBC Radio 4 at 20:00 GMT on Tuesday 20 December.

If I manage to listen to "Can You Touch Your Toes" with eyes shut and brain engaged, I'll try to blog about it later or maybe tomorrow to open a forum here for any reactions.

I began by saying I don't hold out much hope. But I still do. I always will. Or that really would be the end of the road.

Footnote: Having listened now, I really haven't much inclination to add to my comments above. Spoons are precious to all of us. My experience of M.E.bears little resemblance to what was implied on the programme. I can't speak for others.  That ATOS and the WCA is deeply flawed was clearly demonstrated, though. I'm off to practise for enforced work as a draught excluder. Night all. Tomorrow's another day.

Why Are We Waiting? Carry On Up The ATOS Assessment Centre

I know how uncomfortable and step-ridden one of the ATOS Work Capability Assessment Centres in Northern England is. It's the one I had my last assessment at in late 2008 at which I was passed as unfit for work. There is a ramp, somewhere, allegedly, but you have to have eaten a Sat Nav to locate it, if memory serves. Which with brain fog, it most probably doesn't!

I heard today about another friend who had her WCA there this week. She was accompanied by her husband. She has had serious health problems for some time. After having to be off work frequently through no fault of her own (she has nurse training among other skills and was doing a job interviewing patients) there was some difficulty with her colleagues making her life hell because they were having to pick up extra duties in her absence. She's conscientious, hardworking and very caring. Nobody felt worse than she did about being in this position. As her condition deteriorated again, her doctors told her she would never work again and she was forced to leave her job permanently.

When she got to this ATOS Centre in the city, she found herself in the waiting area with another man. The man was obviously in some considerable discomfort because of the low chairs with no arms. The wait dragged on. And on. Apparently four of the ATOS Health Care Professionals on duty that day were off sick. Ironic but true.

Luckily, my friend had taken the necessary medicines with her to last through the lengthy wait. The other man, who was with his wife, was having to move around in his chair and stand from time to time as well as he was able, to relieve his pain. He explained to my friend that he was afraid his back and legs would go into spasm if he remained in the uncomfortable chair. I remember when I was there, if I could have got down and laid on the floor rather than balance, draining every last ounce of spoonie energy, I ached to do so. My friend could clearly see what agony he was in, as a nurse is trained to. Perhaps ATOS had hidden cameras to prove my friend "fit for work" because she could "diagnose" someone else's pain?

The man's wife asked the girl on reception how long the wait might be. She was curtly told that couldn't be divulged. The wife was almost in tears at the cavalier treatment of her husband. My friend, unable to ignore this (as a compassionate human being?) also asked the receptionist if maybe a cushion was available to relieve the man's predicament and perhaps elevate the seat a little? No surprise that this was also stonily refused. When my friend began to reason with the receptionist, asking: "Are you a nurse? Because I am, and I'm sorry but I can see he's in distress," the receptionist merely glared.

"No, I'm not," she snapped. There was a further lengthy wait till a small cushion eventually materialised.

We can be in no doubt now that we are, as Lord Freud so tellingly put it in the House of Lords Welfare Reform Debate, "stock" to the Government and their cohorts, not real citizens with skills, integrity or a history of  hardworking contribution to the world outside their windows.

My friend asked how many other "customers" (not her word!) were already in with the HCPs, to give the man an idea how long he would have to go on waiting. She was told it simply wasn't possible to say. (Nobody ring the fire alarm, then!) My friend politely but firmly persisted. She said she could understand the need for confidentiality, but could the girl just tell her if she was next in? This was grudgingly granted. She was indeed next in the queue.

"Then can this gentleman go in front of me? He's in agony!" said my friend, feeling this was the least she could do to help.

This was sanctioned. Not with particularly good grace or any modicum of proactive help on the part of the ATOS staff.

When my friend finally got into the office for her turn, after another long wait, the HCP at the computer terminal was a nurse. The nurse looked goggle eyed when my friend began to explain the name of her condition. She knew none of the symptoms and effects but tapped incredulously away at the screen. She didn't know the medicines prescribed or their side effects. Luckily my friend had all this at her fingertips, though she expressed a little surprise that the great detail about her disease she had taken the trouble to describe on the ESA50 form, seemed not to have filtered through to the HCP.

The HCP said dismissively: "I don't even know what you're talking about," as she had to have the name of my friend's condition spelled for her to type in.

"But I put all this down in detail on the form..." my friend began.

"Oh, WE don't get that." sneered the HCP impatiently. As if!

After hearing all about the illness, the ATOS woman concluded the appointment with: "I can't help with this, you'll need to come back again and see a doctor."

So my friend has to undergo a similar ordeal again in a couple of weeks, this time with a doctor ATOS HCP. Instead of this nurse ATOS HCP. If they'd actually bothered to read the form, and it wasn't just floating round in the ether for postal staff and/or Job Centre Plus non-HCPs to disregard, maybe this double ordeal could have been avoided.

But that's not the object of the exercise, is it? That would smack of respect and businesslike good sense, even compassion. And that, by all accounts, is disturbingly thin on the ground.

Meanwhile my friend is still more upset about how that other poor chap was treated, rather than herself. That's the nature of many "scroungers," "cheats" and "scum", you see. Genuine long-term illness changes us overnight from pillars of society to something the Government, media and increasingly society at large, believe they've just wiped off the sole of their shoes. I don't know how we ended up lying in the gutter, but nobody can stop us still caring, or looking at the stars.

Jon Snow on Channel 4 News: new knight in shining armour for the hardest hit

Still struggling to fill in my "ESA 50" aka "Limited Capability For Work Questionnaire" and send it back to the DWP before December 8th.

Briefly stopped crying and dying inside at the humiliating catalogue of all that's wrong with me being revealed on the dreaded unhelpful and endless 20 page form (again!) as I watched the Channel 4 news with Jon Snow tonight. New benefit system dogged by 'endless appeals' Stopped sobbing to see the spectacle of masterful Jon Snow ripping at the flabby underbelly of Employment Minister Chris Grayling's defence of the slow car crash that is the Welfare Reform Bill.

"You could halt this reassessment failure now," Mr Snow pressed Grayling like a bulldog worrying a wasp.

At long last, instead of the BBC's propaganda and outright lies, Channel 4 tells it like it is. Pray God it's not too late.

Elsewhere today, Lord Freud in the Lords sounded like a smug puppet who had lost his script as other peers asked him questions about the Bill for which he had no answers. Again. Questions he tried to sidestep or in the face of which he seemed to be trying to hypnotise his opponents into a stupor with his whining, ingratiating but wholly compassion-free voice. Slowly but surely, the tide must turn. Mustn't it?

This on the same day Channel 4 News also revealed proof government plans to privatise NHS. Well done, Channel 4. A voice in the wilderness, calling for the proud and privileged to turn around at the brink of the precipice. A call for those in power to avoid another national disaster, the outrageous scapegoating of the hardest hit and most vulnerable citizens. A call to sort out these flawed Work Capability Assessments and prevent a return to the dark ages of stigma and more suicides for those wrongly labelled the "undeserving poor," left with no scrap of hope or means to face the future.

Thanks, Jon Snow and the Channel 4 team for helping me wipe the tears from my eyes and see more clearly again.

Back to the form. Courage. I can do this, whatever the outcome. Just knowing the truth is out there, whatever double speak and spin Big Brother Cameron chooses to put on it.