Open letter to Andrew Marr

Dear Andrew Marr

On the Marr show this morning you said you had "a greater understanding of disability" since your stroke. Yet when the story was mentioned that Ian Duncan Smith is thinking of getting rid of the Work Related Activity Group of ESA, the group that is supposed to help people back into work when they get instantly and terrifyingly sick, just as you did, you barely flickered a benevolent eyebrow.

What you actually meant was that you have a greater understanding of disability for wealthy people.

I wonder, has anyone talked you through what would have happened if you had been poor? Had you not enjoyed the great good fortune and success that you have? Immediately, I imagine a part of you just bridled - "Good fortune? My success is down to hard work and determination." But refuse collectors work hard, nurses are determined.

Just for a moment, humour me and imagine you were working for minimum wage in the local factory. You worked there for years. But you have no official contract and hours can be patchy over winter. Your wife works too, but between you, you don't earn enough to pay the bills. You get tax credits and a little housing benefit to make up the shortfall. You're still 54.

That morning you woke up on the floor would have been just as terrifying. The precious candle flame of immortality would have blown and guttered, just the same. The look on your wife's face would have been just as frozen with fear and the dazzling blue lights just as disorientating.

When you got to the hospital, the care would have been the same. Thanks to our wonderful NHS, worry and fear would have been contained in the instant. Will they make me better? Will I live? Will I walk again? Will I work again?

But you would fear for your family - how will they eat if I can't work? Will there be a job if I do recover? How will I pay the rent?

For those first few insecure days those fears would have hovered in the background, pushed aside by the fight for simple, vital life. But soon, as the days wore on, the luxury of self absorbed terror would have lifted. Practicality would start to matter just as much as survival.

And so, your wife would have arrived at the hospital one morning with a clutch of forms. Endless, confusing, demanding forms. 20, 30, 40 pages long. Forms for employment and support allowance. Forms for housing assistance. Forms for care. Between you, through clouds of fear, you would have started to fill them in, agonisingly, nervously, a sense of guilt and failure hanging heavy in the room.

After days of wondering which words they want to hear, what magic keys might unlock a door to security and support, together, you would have sent off the forms and waited an anxious wait. Much as you would have been hoping you would be Andrew Marr again, more, you would have wondered if your wife and children would get through this crisis without hiding the gas bills from you and eating simple, joyless meals in the kitchen while you sat in bed oblivious with the best they could give you, praying a little nutrition would speed you back to join them.

The claim comes back and they tell you they will consider it. They will pay you £71.70 per week - not nearly enough to cover the bills. You worry even more. But months pass. You spend them gritting your teeth, just as I'm sure you did, fighting with every last ounce of will to be the Andrew you left in bed that fateful night before your world turned upside down.

Time drags on and on and still you hear nothing. Your wife sells the car, then cashes in a little savings scheme you had set up for your funerals. But it's never enough. The bills keep flooding in and the money keeps flooding out and you still can't walk across the room or speak clearly. There are days of anger, fury that after all the years you worked, now you are left to pick up the pieces of your life alone.

When that brown envelope finally falls through the door, it tells you that your claim has been "successful". You have been placed in the Work Related Activity Group. Letters explain that you are expected to work again at some point, and as such, you will receive £100.15 per week, but you will be expected to attend "Work focussed interviews". The letter is stark. If you don't attend, you could lose your benefits. If you don't do all you can to get better, you will lose your benefits. If you don't return forms on time or jump through whichever hoops the agency feel are appropriate you will lose your benefits.

You want to scream. You want to shake someone until their teeth rattle. "I HAD A STROKE" you want to shout. My life was turned upside down! I'm doing all I can to be Andrew again. If I could turn back the clock to that night, not do so much exercise, not eat so much of that rich sauce, not drink that strong coffee. But I can't. I didn't ask for this to happen, I've never been off work in my life. Why is it all so hard? Why do I feel such a failure? But most of all, don't they realise of course I'm doing all I can to get better? Of course I want to walk again and talk again and play with my children?

It's six months now since you woke up on the floor, helpless and confused. You can walk a little, slowly. You can make yourself understood. But your wife has lost weight. You can see it every day as she cares for you, lifting and dressing and washing, as she cares for the children all alone, as she rushes from one job to the next, desperate to keep the family together.

You call your old boss. "Can I come back?" But he says you're just not ready. His insurance won't cover you. He can't afford you there if you can't do the job.

The work related activity begins. The letter says you must attend a centre right across town. It takes 40 minutes on the bus. You can't get there. You certainly can't afford a taxi and your wife sold the car weeks ago. You phone them to explain, but they say rules are rules. Whatever the rules, you can't get there. The next letter explains that you have been sanctioned. You will lose all of your support for two weeks. Again, you want to scream "BUT I HAD A STROKE!! I CAN'T WALK!

Your wife sells the x-box and the kid's bikes. You can hear them downstairs, angry and resentful, they don't understand why they have to suffer because Daddy got ill. You cry quietly upstairs terrified someone will come in the room, but unable to hide away.

After 7 months, exhausted and ashamed, you go back to work. You're not ready. The doctors say you shouldn't go back, the physio says you need more time. But there is no more time. Time has run out. If you don't go back to work you'll be evicted and you simply can't let that happen.

This is the reality of life in the UK today if you happen to be poor and random life throws you into crisis. Still you might not believe me. You might say I'm exaggerating, that no system could possibly work the way I just explained in a developed democracy. A part of you might allow yourself to think you tried harder, you're stroke was worse. You didn't and it wasn't

You simply had the cushion of a comfortable life propping you up. Without that cushion, you would have been astonished, appalled by how you were treated. Your view of being disabled in the UK today would have been very, very different.

Finally, just in case I made you think, even a bit, imagine there was no wife. There were no children. No family or friends close by. Who would have washed you and fed you and encouraged you then? Who would have filled in the forms and kept things afloat while you dribbled and hobbled your way back to health?

If you think the answer is the state, think again. And if you think you know what the vast majority of sick and disabled people go through, think again.

All you had to do was concentrate on getting better.

I thank God that you are and for the care and support you had to get there. But perhaps, now and then, you could read the odd article about how it might have been very, very different.

http://www.stroke.org.uk/news/working-stroke-survivors-struggle-most-make-ends-meet Stroke survivors struggle to make ends meet on ESA

http://www.derbytelegraph.co.uk/Hundreds-Derbyshire-win-victory-sickness-benefits/story-16337459-detail/story.html Derbyshire stroke victim wins victory in benefits protest. ....

http://www.theguardian.com/society/2012/may/29/benefits-system-fit-for-work "following a severe stroke, Jan Morgan was shocked at how she was treated by the benefits system....

Update : When a post goes viral, you think of the one thing you should have said. 

I had a stroke. Luckily, it turned out to be a TIA - a trasnsient ischaemic attack. A stroke that fades away with little effect. I have the most imperceptible left sided weakness from it. If you look at a picture of me, you'll see my smile lifts a little less on the left than the right. 

But for 30 minutes, I went totally blind, lost the power of speech, became totally paralysed down one side and I had no idea if it would last or pass. I was locked away in myself for 15 of those 30 minutes, absolutely knowing that I was having a stroke. Mentally, functioning exactly as always, but unable to express myself in any way. It was without doubt the scariest 30 minutes in an otherwise fairly grade A scary life.

Please with just a few days to go, would you all sign the WOW petition http://wowpetition.com/ and share it amongst your friends and family