Diary of a Benefit Scrounger

Ability Disabled

2012-03-06T11:59:00.000Z

I've been trying to pin down a hazy idea that's been floating about in my blog-head for a few weeks now.

Disability.

People greater and way better informed than me have struggled with definitions of disability for decades, so I won't pretend to analyse social models or medical models or biopsychosocial pseudo-science.

I'm thinking about our lives. And the way that they've changed since around 2008.

I never ever thought of myself as a "scrounger". Far from it. I had a terrible illness that limited my life in thousands of ways. Crucially, I was never given any cause to.

My Blue Badge was the thing that improved my quality of life the most. It literally made the difference between leaving the house and not. If I can park right outside the door of the supermarket or the school or the hospital, I can go, if not, I simply can't manage.

Yes, I can walk. I can just about get round a small supermarket without feeling so exhausted I have to sit on the floor. Before I had the Blue Badge, I regularly had to sit down in a shop and put in an SOS call to my husband. I became more and more insular, less able to enjoy the things everyone else took for granted.

When I decide to go to a shop or a school concert, I know that the rest of the day will be a write off. How does the act of over-riding my disability affect everything else that I do? My energy and ability are limited (see The Spoon Theory for a wonderful explanation http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory-written-by-christine-miserandino/ ) and for me, managing my disability means achieving as much as I can, every day, with the limited ability that I have.

I could have given up. Many do. I could have gone to bed and said enough was enough. Given up the daily struggle for a degree of normality.

I could give up on food (it disables me more than anything else) and accept a permanent feeding tube. But I like food. I refuse to give up on something so fundamental, so entwined with social interaction and pleasure, just because it hurts and makes me vomit and keeps me on the loo all day.

I could have chosen not to have children. Some might legitimately argue that I should have done. But imagine the joy I'd have missed? The love that fills the places where pain lurks. The shiny little faces that make me be more, do more every single day. Sometimes (well, often) it's all way too much, but they keep me going, always more important than my various symptoms or dark, dark, days.

I could use a wheelchair, I very often need to. But then I become more disabled. My muscles waste a little more, my heart would get a little weaker, my blood, already sticky with inaction would clot a little easier, potentially bringing on stroke No2.

I could stop bathing or washing my hair or getting myself dressed. Sometimes those simple things take me all day. Sometimes I can't do them at all. But then who am I? What is left?

Disability Living Allowance (DLA) was the extra money to acknowledge all of those things. It meant I could buy food that didn't make me as ill. It meant that I could pay for some help in the bad times. It meant that I could get my children to school in a taxi on days I can't leave the toilet. It meant that I got a Blue Badge.

As we all trawl through the criteria for the new benefit to replace DLA (PIP or Personal Independence Payments) it becomes clearer and clearer that is designed to disable.

If I can make a simple meal using a microwave, if I can get dressed and wash myself, if I can walk more than 50 metres, whatever it costs me, I am no longer disabled. It no longer matters what those things cost me, their effect is irrelevant. If I can clean up my own incontinence, incontinence is no longer disabling. If I can chew, I am not disabled, never mind the carnage that the transit of that food causes.

So, if you are disabled - and make no mistake, I mean disabled in any way at all - deaf, blind, paralysed, mentally ill, or if you have a "fluctuating condition" like mine - if you can leave the house, care for yourself in the most basic ways and stumble through a semblance of "life" you will not qualify for PIP. If you give up, stop trying, stop fighting for every minute of every day, you might.

The same is now true of social care. As councils up and down the country attempt to save an eye watering 25% from budgets, "moderate needs" no longer exist. You must simply struggle through "moderate" until the daily effort pushes you towards "critical" Then the skeleton remains of state assistance will pick up the damaged pieces. And those pieces will be more damaged, will cost the NHS more money.

The message on disability is clear and is ringing out loud and true across every town in the country - "Give up, don't fight, don't try to be the best you can be, don't cling to pleasure - it is not for the likes of you.

Don't you dare EVER have good day, take a holiday, and God forbid, throw caution to the wind and risk days of pain for a moment's joy on a water slide. Don't stay active, don't keep your disability at bay for as long as you can. Don't try to avoid costly medical interventions. Don't let your neighbours see you in the garden or hoovering the lounge. Don't cook a beautiful meal, eat microwave meals and be grateful. Don't be so selfish! How DARE you think you deserve a partner or children and if you do, expect that they will become more exhausted, more neglected as they are expected to become "critical" themselves just caring for you.

It is a terrible, sinister shift. Possibly not designed to be so - who knows? I could no longer say for sure if this is utter ignorance and a lack of understanding of disability, or a sinister attempt to ensure that disability becomes more marginalised, less visible and in the end.... well in the end what? What will become of us?

The Government think we will all buckle down and get jobs. I still cannot imagine in any way at all what makes them think we didn't try that already - in some cases, mine included, until it brought us to the very brink of trading our lives for a pay cheque.

We are talking about millions of lives, not just a handful. Half a million people losing DLA - half a million!! Many more losing ESA. Yet more left to sit in their own filth, eating when a neighbour knocks to check, for want of a little social care.

Once again, I ask whether we need to wait for this terrible, inhumane bomb to explode across our news bulletins or whether we think again. Now. Before it is too late.

A Busman's Holiday

2012-03-05T10:21:00.002Z

I did mean to say I was taking a break, but I was a bit too tired to type it properly and, you know, think much.

All the time I was working on the Responsible Reform report, my kids, my husband and I were counting down the days til "Mummy Holiday". I promised faithfully that I would take February off, lock my laptop slavedriver in a cupboard or something and go all Nigella on our neglected home life.

I know this sounds utterly naive, but I honestly thought that I'd be able to turn off the tech on the 10th January, snuggle up under a duvet for a week or so and then fix my broken life. We'd been ignored for so long - in the media, by politicians, by the public - I never once considered that anyone might actually start to pay attention. I never in a million years thought I'd be fielding calls from Newsnight and the BBC. If you'd told me a UK welfare report would trend globally on twitter, I'd have laughed.

Well, that's what happens when complete novices learn as they go along.

So, I'm on holiday! As Kaliya said, it feels like the first week of school holidays! AND I get the added bonus of watching Workfare crumble spectacularly, A4E fall apart at the seams and Chris Grayling stuttering like an indignant toddler caught with his hand in the sweetie jar.

Just for the record, I give ESA about another 4 months before that too collapses, groaning, under the unprecedented incompetence of it's own design. Can't wait, can you?

But last night, tweeting a bit with friends, and reading a few "Save our NHS" articles, I got to thinking about what had made the Spartacus campaign so powerful? What on earth made welfare sexy? And I remembered that it was the personal stories. The One Month Before Heartbreak Twitter campaign and Left out in the Cold. The #fitforwork tag and the #DLAstories.

We, as people, or "the public" are constantly de-humanised by our political system. Claimants in need are referred to as "Stock", numbers claiming as "flow rates", patients as "clients". We forget all too often WHY we are fighting and who we are fighting for.

So I asked people : Has the NHS ever saved your life? Really think about it? Even if you were immunised, there's a good chance that it did. Nasty broken bones used to kill people, and flu and tonsilitis and even a dog bite. Most of us were born in a hospital if nothing else. Even that nasty chest infection you got last year could have seen you off if it had been left to develop into pneumonia for want of the money to pay for antibiotics.

How many children did your Great-Nan have? How many survived? We can go back you know. We can always undo the great good work we've done over the years to make the UK the most equitable health nation on earth - yes read it again, the UK is the world leader in treating conditions on need, not on the ability to pay. We are the best at something.

Oh, of all people, I know the faults of the NHS. But I'm still here to write about it.

Within minutes, @concrete_sky had suggested a hashtag - #nhssavedmylife - and this morning it was trending No1 in the UK. The stories are heart warming, harrowing and sometimes challenging, but they remind us that come what may, we have something precious that is worth fighting for.

Join the fight, tell your story. If you can say the #nhssavedmylife add your voice.

Let's remind Andrew Lansley why reform must always be responsible. And let's remind him exactly who the NHS is there to serve - the patients.

A Post About Pooh

2012-03-01T09:20:00.001Z

I know, the Welfare Reform Bill passed.

In a fizzle of shame, it gasped it's way through the Lords last night.

But we always knew it would, so I'm going to talk about pooh.

If you have Crohn's disease, you live in fear of one thing - the Gastro Bug.

My bowel is knackered already. I mean completely and utterly borked. It's had bits lopped off, bit's sliced and stitched, bit's stuck together, bits that just gave up and exploded fairly dramatically, bit's that turned into huge weeping abscesses and bits that sprung holes like a leaky bucket.

Thanks to the NHS, it's been repeatedly fixed, glued, joined, patched and soothed but I haven't got as much left as you lot and I have permanent gastro-enteritis.

Have you had food poisoning? I mean really? Have you spent all night on the toilet groaning, seriously thinking you're going to die? Did you pass out as the clammy sweat of nausea crept through every atom of your body? Did the pain feel like a red hot poker, stabbing through your guts and out through your spine? As the colour drained from your cheeks and you dripped with a shivering, cold, sweat? Did you pull all of your stomach muscles retching endless burning acid into the toilet bowl? Did you break a rib, the spasms of peristalsis racked your body so hard?

You couldn't believe it was possible to feel that ill and keep breathing could you? Come on really think about it! That dodgy curry after the rugby, the shellfish in Marbella, the gastric-flu that kept you in bed for a fortnight?

Well that happened to me when I was about ten and never stopped. Never. Not for a week. At first, I thought it could only be a matter of time - no body could repeatedly go through that endlessly, a horrific, grinding Groundhog Day and survive.

But you know, somehow, it can. I've never worked out how, but even when you want to go to bed and never wake up, when the pain is so bad you can't think, when you can't remember the last time you slept for more than an hour of two, you go on. I went through university and worked for 10 years through that. Every day.

28 years later, I'm slowing down a bit. My body is complaining, I have deficiencies of this and crumbling bits of that. My bones haven't developed properly and already have osteoporosis. My teeth have crumbled away from the steady coating of vomit acid. I can't walk very far or stand up for long or pick up my children - I'm really, really tired.

But some days, if I'm really lucky, once in a blue moon, I might be that fraudster on the water slide, pretending she's disabled. The "cheat" who dared to risk all of the above but still go to London for a day trip or cheer at the sidelines of my little boy's school football tournament. I'll be the one who defiantly hangs on to pleasure when it comes my way - it comes so rarely.

2 days ago, I caught a Gastric Bug. I've been lucky - it's been years, but the particularly snippy diarrhoea and vomiting bug that's putting healthy people in bed for two days has found me.

My bowel is their favourite playing ground of all. They will set up camps in my leaky bits, have parties in the pockets and loops that shouldn't be there. Last night, I broke my personal-best poohing record. My bowels exploded in agony 28 times!! 28!! I have no idea why I started counting, there was a point to it last night, but I've forgotten now. I may as well have cholera now, and I'm off to bed for a bit.

So why the graphic, uncomfortable, faecal, vulnerable post this morning?

Because the Welfare Reform Bill, 2010 passed last night and people like me just lost everything. Regular readers will know, I have been told I don't qualify for DLA and I almost certainly will lose Incapacity Benefit as nothing in the ESA descriptors would mean that I qualify for ESA. Even if I did I will lose it after a year as my husband earns more than £7,500 a year. I'll never qualify for the Long term Support Group because I will never be "completely incapable of any kind of work at all". Also, with a bit of luck, they'll never actually tell me I've only got six months to live, I'll just burst somewhere at some point. So that means I'll never qualify because I'll never be "terminally ill" (Though of course, I will be, potentially, every day.)

People with "moderate needs" like mine - I'll leave you to judge how moderate my disability sounds from the description I just gave above - will no longer qualify for any kind of Social Care. Nor will my children unless I get to the stage where I physically can't get them to school.

I won't qualify for the new PIP - my incontinence is not severe enough to qualify. I was incontinent 7 times last night, cleaned myself up, changed my own clothes. But I did it myself, which means my disability doesn't affect me, according to the new rules.

My husband won't get carer's allowance, we won't qualify for any of the things the Government say are exempting the disabled from the worst of this bill because look! They've de-classified me!! Evil genius isn't it? We won't be able to earn a little more before we lose support because guess what? I'm not disabled now, so I won't qualify for the "help disabled people are getting".

So if you haven't read my blog before, I hope all the talk of pooh didn't make you feel too uncomfortable. But I hope more than anything, that what we just did to compassion, dignity and the lives of sick and disabled people up and down the country makes you feel very uncomfortable indeed.

29th Feb, 2012. The Welfare Reform Bill, 2010, became an Act.

And everything changed.

2012-02-27T13:23:00.000Z

Spartaci – we need you – to get the message out…

Posted by Jane on 27/02/2012

… that our PIP Consultation Guidance is available

Sometimes you come across something that inspires and uplifts you. I have struggled all day to write something uplifting, something inspiring that would spur you into action, not only to respond to the Government’s consultation on PIP but to take it further and inspire others too.

I was shattered and ready to go to sleep after nearly 15 hours of hard slog, preparing to launch the documents on which the small but dedicated team of volunteers have been beavering away, when I stopped to read a post. The bone weary tiredness vanished and I was inspired by this:

“Please, please, please, please, please, please…. let this be the way for advocacy. We have waited so long for a consolidated effort.“

How true. Each of us has our own reason for being involved or wanting to make our voice count. Perhaps this is the first you’ve heard about what’s happening and can’t quite believe it; maybe like many you’re scared and feel so powerless that fear translates into a worsening of your condition.

The internet gives access to information, support, friendship and a sense of community, in a way that perhaps you only appreciate if your life is spent within narrow confines, even while your enthusiasm and passion transcends your limitations. You feel reduced to a label, a diagnosis that cannot possibly show that you once sailed the seven seas, created art or had a degree in maths.

This is the next chapter in the Spartacus story – it’s our story, one we write together, inspired by a few and supported by many. It’s hard, we know that, but the truth is on our side. Never again should we be made to feel any less than the brilliant, talented unique individuals that together achieve great things.

Have a look at the documents here or join us in the forum – we have 8 weeks to respond. Let’s see if we can get to 10,000 responses; that would be amazing. Why not aim high? The more we succeed the louder our voices become. We are Spartacus!

For more information, please go to http://wearespartacus.org.uk and HUGE aplause, congratulations and love to all who worked so hard.

Responsible Reform report, Fundraising

2012-02-26T09:38:00.000Z

I have been meaning for some time to outline the costs of producing the Responsible Reform report. I'm sorry it's taken so long, I literally just threw all the receipts in a box and dealt with the madness of 18 hour days as they happened. Then, as most of you know, I had to go into hospital soon after producing the report and have been extremely unwell and in and out of hospital ever since.

Printing Costs : 1856
Envelopes : £100
Couriers : £114
Phone Bills (landline) : £390 (On top of normal costs over 4 months)
Phone Bills (mobile) : £261 (On top of normal costs over 4 months)
Parking Ticket : £70 *See anecdote
Petrol £182

Bank / Credit Card charges : £292 - (Paypal error over Xmas left my personal account carrying the printing costs for 10 days, then transfer delayed following month too)
Cheapest laptop I could find (mine broke in late December, leaving me unable to finish report) : £339
New Landline phones (mine had died by December too! By Xmas I was using two home phones, a mobile and a computer all with dead batteries!) £39

Childcare 6 x £36 : £216 (When I had to drop everything to get to interviews etc)
Train Fares : £267
Taxi Fares : £162
Expenses while in London on various trips (PA to accompany, meals, drinks etc) £313
Expenses for volunteers (envelope stuffing weekend, snacks, drinks etc) £72
Printer ink, paper,stamps (covering letters) : £177
Fund/PayPal fees : £737

Food and personal expenses gifted to me personally at end of campaign to cover miscellaneous costs I had incurred producing the report, ie debt, take aways/food for children when too exhausted/away from home to cook etc : £827

Money still in fund : £956

Total Donations : £7370

Today, I have closed the fund. Many, many supporters and friends have wanted to donate funds to me personally, and I have repeatedly asked that they don't.
http://diaryofabenefitscrounger.blogspot.com/2012/02/why-i-write-this-blog.html
http://diaryofabenefitscrounger.blogspot.com/2011/12/fighting-fund.html
http://diaryofabenefitscrounger.blogspot.com/2012/01/consultation-way-forward.html

Despite being enormously touched and grateful, it is simply not right that you give your money to me - many people have campaigned on the welfare reform bill, many have given their time, I'm sure many have incurred personal costs they can ill afford.

Thank you for making the Responsible Reform report possible, for trusting me to complete it, to produce it and to pay for it on your behalf. It was however, a specific fund for a specific reason and thanks to your goodwill and a huge heap of luck, we achieved our goal.

I will keep the £956 in the fundraising account for future potential fundraising, or donate it to a charity of your choice - please make suggestions in the comment thread.

When I discussed whether or not to raise money with other campaigners, no-one was either prepared or able to set up an account. In the end, after much discussion with my family, I did so. I may have risked my own security and that of my family, but I did it because it had to be done and frankly, no-one else would do it. Any changes to the fund were made after consulting widely through my blog.

* Anecdote : To produce the Responsible Reform report in time for the ESA votes in the House of Lords (11th Jan) we had incredibly tight deadlines. Everything had a day on which it simply had to be completed or we would have missed those deadlines. Everything rested on the printers - closed over Xmas, they opened on 3rd Jan and our order HAD to be in by 10am on that date.

I took my 3 yr old to nursery that morning and as I started my car and pulled onto the main road it ran out of petrol! It was icy cold and raining.

Thankfully, two good Samaritans stopped and pushed my car onto the kerb. It was 9.05. I could call my breakdown service and wait - missing the print deadline - or I could attempt to walk home, put in the order, then arrange to rescue my car, hoping it would be OK. I did the latter.

I stumbled the mile or so to my flat, rain dripping off my nose, staggering and weaving with pain by the time I got there, vomiting twice on the way, walked in the door, picked the phone up and got the order in by 9.45. Then, I arranged for a neighbour to drive me to a petrol station and went to rescue the car. By this time, despite leaving a note in the window, I'd incurred a parking ticket. I am appealing the ticket, but have to assume they will make me pay it.

They don't like it up 'em

2012-02-22T18:50:00.002Z

Well, well, well.

Diddums Dunky-Smith (So named after this Mail rant : http://www.dailymail.co.uk/debate/article-2104022/The-delusions-X-Factor-sneering-job-snobs-betray-young.html ) is NOT happy.

It seems some serfs dared to question the wisdom of his Great Reforms. It seems that slavery was a step too far for "ordinary folk" who quite like a bit of X-Factor, and that a department used to getting their own way with absolutely everything - sending cancer patients to the jobcentre, halving support for disabled children and conducting a programme of disability denial I am not allowed to make any comparisons with (*cough* Nazi Germany *cough*) - do NOT like the masses having opinions.

This has made ministers Very Cross.

They have accused their critics of being "A small group of anti-capitalist extremists" (Grayling) "Luddites" "liars" and "elitist snobs" (IDS)

For daring to suggest that forced, unpaid, work, might be a teeny-weeny bit like slavery.

Gracious!! And there was me being so awfully, excruciatingly, polite with all that Spartacus Report stuff!!

So apart from the obvious retort : Pot. Kettle. Black . I just wanted to say one thing.

This department (DWP) have used politicised press releases, media bias, misleading statistics & misrepresentation at EVERY stage, as they tried to push through changes that will hurt millions. It has set neighbour against neighbour, poor against wealthy, sick against healthy. It has knowingly and purposely used the most damning spin and the most cruel angles.

Watching them stamp their feet in a frenzy of entitlement has given me much pleasure. Watching their outrage whilst keeping one eye on the Daily Mail comments - unanimously against the scheme on votes - has been delicious.

Reap what you sow Dunky, reap what you sow.

Anyone for Disability Ping-Pong?

2012-02-21T19:47:00.002Z

I'm too tired to explain to anyone who doesn't read my blog why this is funny, so dear regulars, look on this as a private joke :)

Courtesy of the saucy, heart-lifting, belly-achingly funny @MargoJMilne

Why I write this blog

2012-02-21T07:31:00.001Z

Pssssst! I'm home! *looks around furtively*

We haggled ;) Lovely consultant agreed to a kind of in-patient-at-home arrangement where he will order all the tests I need as urgent, and I will schlep up and down the M11 to get them done.

I know it sounds fairly bonkers, but of all the options available - abandoning poor little broken 3 year old, pushing Dave further into a stress frenzy, squatting in the middle of my Mother-In-Law's life, crumbling under the horror of an in-patient stay etc it was my "preferred option" and Addenbrookes are my "preferred provider." (See what I did there Mr Lansley!!)

The utterly unstoppable Kaliya Franklin folded her indomitable arms (no doubt popping a few joints as she did so) and squared up to Social Services on my behalf. Apparently they weren't mean at all and didn't laugh at her. They phoned back within the hour and a nice lady is going to go through all the options for some support with me today.

Finally, my Mother folded her equally indomitable arms and will be terrifying GPs and dentists all around Sussex once surgeries open. I'd stay indoors if I were you.

Soooo, as usual we have "a plan" or at least a "plan for a plan."

I started writing my blog because I thought that by telling my story, day in, day out, it would give a picture of life with a "fluctuating condition". My life has been a fairly constant basket case for as long as I can remember. You're not just ill - if only!! Noooo, the being ill bit means that everything else in your life is affected. Your finances, your time, your partner and family. I'm sure it can't just be me. Dave and I just sort of lurch from one crisis to the next, trying to manage everything as best we can.

My Dad is 89 and has Parkinson's. Dad's get old. They just do. He needs a lot of care now and has his own crises every month or so - midnight ambulances, pneumonia over Xmas.

But I'm still ill. So then there are two crises to deal with.

We had to move in November. Tenancies expire, they just do.

But I'm still ill. So then there are three crises to deal with.

Dave suffers from depression. He's a carer, he's exhausted, it'd be a miracle if he didn't have depression.

But I'm still ill. So then there are four crises to deal with.

Little one smashed his arm last week. Toddlers hurl themselves off things, they just do.

But I'm still ill. So then there are 5 crises to deal with......

You get the idea. And I KNOW many of you reading this will have lives that are just the same. Because the illness part makes everything else a much bigger crisis.

I write my blog to show my life, but by doing that, it's so that I can show YOUR lives. You know what we don't say often enough? In our quest to be reasonable and convincing and rational?

IT'S BLOODY HARD!

You need endless positivity to be ill. Endless resilience. You have days where gritting your teeth against the pain or fear just isn't enough. In quiet, desperate, exhausted moments where it seems there is nowhere to turn, no answers, we all crumble. Just getting out of bed can be a major task with an endless string of tasks stretching on towards the horizon.

So, to all the wonderful people who wanted so much to give me money yesterday, to help me out of a fix and make things just a bit easier "Thank you" (If you didn't see the comments on the articles yesterday, do read them. I promise it will restore your faith in human nature http://diaryofabenefitscrounger.blogspot.com/2012/02/reality-of-disability-denial.html )

But this is just my life. If you all give me money you can't afford, (yes, I know some of you were fibbing outrageously when you said it was fine) you'd be paying for me until the kids leave home!!

Nope, other options must be found. I will just have to get my head down, look at our budget and make some big decisions. If I can't earn money now, after the year I just had, the trolls really would have cause to criticise wouldn't they? You'll see, I have no advertising on my site and I always declined any offers from organisations to fund me. Who could I take money from that wouldn't compromise the campaigning I do?

But now, with the bill practically law, I'll just have to find someone who wants to pay me for all this work I've been doing for free. I'm not quite sure who yet, but "something will come up"

Of course, there's still the illness. Always the illness. So it has to be something I can do when I like. It has to pay enough that Dave and I don't miss the tiny support left that we do still get, but that ought to be possible - after all, I'm practically running the DWP already and Dunky-Smith earns a huge wedge ;)

So when I write about my life, I'm always hoping that I'm writing about writing about our lives. I don't need sympathy or glory, I don't need any more help than I always need. I don't want you incredible people to hurt for me I want you to be heard. Hurt for your own losses, your own crises - believe me, I know that they take up most of your strength, every day. Mine are just another story, another life, another utter failure of the system.

It's that failure I want to expose - for all of us. Enough is enough. By telling the world how the state and the systems and the structures fail me I am simply showing how they fail us all.

**By the way, later I will put up another post outlining what the Research Fund was spent on and how much is left. I've been meaning to for weeks. As the fund still looks as though it has £6,000 in it (It definitely doesn't, lol) I'd better lay out how the money was spent.

What WILL I do?

2012-02-20T07:40:00.003Z

I'm going up to hospital today. They might keep me in.

The "might" part of that sentence is that they will almost certainly want to and I will do my best to wriggle out of it.

Oh, I'm not well. No doubt about that. I'm less unwell than my last admission, but unwell enough not to be able to get through a day. I can't look after my own children, my Mother-In-Law has been here for about a month doing school runs and making the dinner. She can't stay much longer - her own life urgently needs attention.

It's not the crohn's. Nope, this time it's some unspecified immune oddness. I've lost a shocking amount of weight, I'm weak and frail, I'm getting constant low grade fevers, I've had a cough since May and every few weeks it flares into some kind of full blown infection/flu.

My local hospital weren't interested. At all. Too complicated. Sent me home muttering something about it all being something for my consultant to look into (My consultant is 130 miles away in Cambridge and my local hospital still use carrier pigeon.) They didn't even recognise my chemo-shots until I told them the generic name.

That was 3 weeks ago. 3 more weeks of shuffling around the house, coughing, trying not to pass out when anyone's looking, aching and paining, basically cluttering up the place like a great heap of patheticness.

So the only option is for Cambridge to take me as an in patient and run all of the tests my local hospital should be running but haven't heard of yet. (**See why I think NHS localism is a really, really, bad idea?)

So why on earth wouldn't I want to go into hospital? Why wouldn't I want to find out what's wrong and get it treated?

Oh, you know, it's that little thing called "life" again.

Who will look after my children? While I brew a nice few PTSD attacks in a hospital bed 130 miles away, who will do the school run? Wipe away tears? Pack lunches and do cuddles? My 3 year old broke his arm pretty horrifically on Wednesday and is still getting used to the cast and the pain - who will help him up when he get's stuck on his back? Or make sure he has his medicine in the nice Toy Story cup that means he takes it? Seriously? Who?

How will I afford it? Dave will have to visit (only at weekends though) and that costs £60 a time in petrol, £70 for overnight stays, £15 or so in hospital parking and £70 here and there every time he has to take a day off for compassionate leave.

How will Dave manage? Will his boss understand? Again? Or will this be the time he loses his job? Will he make it through yet another bout of stress and worry or will he have another breakdown?

The only answer anyone has ever managed is "Well, you have to. Your health is at stake."

Hospital stays trump everything. Getting "better" always comes first. If I object, I get the "look" - "concern mixed with frustration mixed with impatience. It's so easy when it isn't you. It's so easy to say "something will come up" about money. It's so easy to say "Oh, people will all pitch in with the kids" (They won't and don't) It takes just seconds to say "You'll be fine" (I won't and it will show as I crumble daily, trapped in a Kafkaesque in-patient system I have come to loathe)

But actually what do I do? There is no nice number to ring, no-one I can appeal to. Social Services would just laugh, I'm so far away from needing a care package according my local authority, I might as well be an Olympian. I got refused DLA, which would at least have paid for some petrol and childcare. Soon, I will lose my ESA too.

Dave and I have been in this situation many times. Our parent's are getting older and less able to step in, take over, run a family popping with the boundless energy of two small boys. What do you do? There is nothing. I'm no longer classified as "disabled" I'm no longer classified as "unwell" I never was classified as in need of care or local support.

Which is odd, because I know that the next 4 or 5 weeks will cost us thousands of pounds. Money we don't have. If there is no-one to pick my child up, he just has to stay at nursery - and we have to pay for it. If I can't walk to the school gate, we just have to get a taxi. When I'm in hospital I just have to buy extra food - or I'll lose more weight and get more ill. You can die if you lose too much weight you know Mr Dunky-Smith. The petrol money will have to come from somewhere, but where? Who will pay for the B&Bs?

It's not just about the money though. Who will look after my children? Do the school runs? Get the shopping in and cook dinner? Who?

"It'll all work out" is no answer at all.

Eternal Slavery for Sick and Disabled

2012-02-18T10:21:00.001Z

Well, I'm awfully sorry, I did always say the welfare reform bill was very, very, long and very very complicated.

We did our very best to make sure we'd noticed all of the evil, opposed all the of the disgusting nasties. We pored over plans to send cancer patients to the jobcentre and leave disabled children to starve. They tried to make profoundly disabled adults prisoners in their own care homes, but we noticed that and got it dropped. When they tried to "re-classify" paraplegics as "fully mobile" because they have wheelchairs, we screamed about it - they dropped that too.

We made quite a noise about socially cleansing all of the poor people out of London and evicting pensioners and foster parents for daring to have a spare room. As for letting the Government decide how long you are able to be unwell, we made a dreadfully big fuss over that, but sadly, they remained convinced that their DWP magic wands would make 1 year enough.

Well, it turns out, we missed the "Eternal slavery for sick and disabled people" Clause. (Clause 54) You know, it was busy, we had a lot on our plate, we had to keep taking naps. It was obvious we would miss something - possibly enforced euthanasia for puppies or the National rollout of a new eugencis programme, so in a way, it's a relief it's only eternal slavery. At least if we're lucky "Masser" might let us have a drink now and then, a bit of nice balm for the chaffing of the chains.

The satire urge is just too strong for me, so @latentexistence has done an excellent job of telling everyone what this actually means here : http://www.latentexistence.me.uk/government-taps-sick-and-disabled-people-as-source-of-free-labour/#comments
The Guardian broke the story here : http://www.guardian.co.uk/society/2012/feb/16/disabled-unpaid-work-benefit-cuts
And updated it here : http://www.guardian.co.uk/politics/blog/2012/feb/17/disabled-unpaid-work-benefit-cuts-documents

Basically if you are sick or disabled and an assessment has found that you may be capable of some work at some point in the future, with the right support, you can now be forced to take part in the Government's "Workfare" scheme, working for free to make more profit for Tesco and Asda and Poundland! Yay! With Lupus or Schizophrenia or Leukaemia or waiting for a kidney transplant or.... well anything really. You're probably exempt with less than 6 months to live, but only if you can be sure it's not a day over 6 months.

On top of this, although unemployed healthy people can be forced to take part for 8 weeks only; lazy, feckless cancer, MS and Parkinson's patients can be forced to work forever. For free.

Now, it's OK cos as with every last detail of the bill we opposed their answer is "But we wouldn't really do that, it's "just in case". We only want to the power to force sick and disabled people into eternal slavery for a rainy day! Of course we'd never make someone work forever for nothing!! Now off you go (pat on head) and trust us.........

**The satire is too strong. Even the Guardian cartoon today is about this : http://www.guardian.co.uk/commentisfree/cartoon/2012/feb/18/martin-rowson-welfare-disability-cuts-cartoon?CMP=twt_gu

What did that all mean then?

2012-02-15T08:39:00.000Z

This post is a sort of prequel.

Lots of people have already asked me "But what did yesterday mean and I'm afraid it will be a while before anyone can properly answer that.

The House of Lords scrutinises a bill "line-by-line". They are there to go through every last detail of policy and amend it where they find fault. There are no big-bangs, no fireworks, just lots and lots and lots of technical details. They get harder and harder to report and harder still to explain. The "nuts and bolts" of yesterday were fascinating, but definitely for another day.

What I can tell you is what it meant politically.

Let's go back a year. The Broken of Britain were in the last days of their "One Month Before Heartbreak" campaign. The DLA/PIP consultation was just about to close and they had successfully inspired thousands to make a submission in a first blaze of social media activity.

We had nothing and no-one. Welfare reform was the one rock solid area for the Government. The media were eagerly whipping the public into the full throes of rabid scrounger hating. The "opposition" were, erm, not opposing. At all. In fact they were actively supporting both the Government and the stigma.

We couldn't get a journalist anywhere to report welfare, they practically held lavender hankies to their noses at the thought. No-one cared about the details of the bill and it marched on, seemingly unstoppably, towards becoming law.

That's what we won. That's what we changed. Step by step, tiny victory by tiny victory, we chipped away relentlessly. Like Andy Dufresne in the Shawshank Redemption. Chip chip! A story here, a journalist there, a politician persuaded, a peer convinced. Chip, chip! Exposing their mistakes and their fibs, speaking at this conference, speaking on that radio show. Chip, chip! An email or a letter or a blog post or an article.

And somehow, magically, the tiny chips became a dent and the dent became a hole and the hole became a tunnel, right through to Grayling and Miller and Freud. Right through to the Daily Mail. Right through to Newsnight and the Spartacus Report and the ESA defeats in the Lords and our DLA amendment. We had an amendment!!! In the House of Lords!! Lord Freud had to answer our report!!

What's that got to do with yesterday?

Power.

Without it, as we all know so very well, you have nothing. But by yesterday, we held some cards. By yesterday, the Government were unsure. By yesterday, they had to compromise.

I know that compromise is a boring word. We all wanted explosives, heavy artillery and preferably, for Freud, Miller, Grayling and IDS to be permanently exiled to somewhere in Afghanistan with a lot of bandits.

But compromise is what the Lords are there to ensure and finally, dragged kicking and screaming towards the naughty-step-of-honesty, Freud had to suck it up.

Yesterday, I said we would know where we stood as soon as the debate started. It was all about tone. It was all about how many peers turned up to moan a bit about financial privilege. It was about how much momentum we had built up and just how worried the Government were. Another round of humiliating defeats would have been a disaster. If we had no chance of inflicting any, then it was game over.

If, however, peers were as cross as we felt they were, if they were as concerned for us as they were for democratic process, then they could make things very sticky indeed. If they chose to. And it was a choice. The amendments themselves barely mattered yesterday - we didn't even have time to work out what they all meant. They were symbolic "If you don't compromise now, we will test you" Sort of the parliamentary equivalent of your Mum shouting down the stairs "Don't make me come down there!!!"

Ohhhhhh they did us proud. First an almighty slap-down from every corner of the House over the misuse of financial privilege. Oh, it was brutal. Freud, checking over his shoulder, looking nervously about for friendly supporters or grim faced opponents. When peers call the commons "bullies" and one peer calls another "sneaky" in oh-so-courteous Lords speak that's like your Nan calling her bridge team the c word.

The gloves were off and from the first few minutes it was clear that peers were up for a fight. Process had been pushed too far, convention stretched to its limits and that was the best possible scene we could expect to see.

The first amendment saw Freud compromise. Bns Meacher, who had taken no prisoners at all seemed content enough to withdraw it. A win.

Then, over forcing people in social housing to move to imaginary homes if they have a spare room, more passionate speeches, more forensic slapdowns and Freud was squirming. Peers pushed it to a vote and we won! Message? "If you insist, we will defeat you." That was all we needed. Just that one.

We won the Crossbenchers, we won 9 Lib Dems, and even a few Tories seemed to stay at home. Freud knew then - if he pushed any more votes, he would lose them.

And so the offers started to come in thick and fast. To avoid any further votes, he pretty much accepted all of the "Amendments in Lieu". He got flustered, forgot which amendment came next, and at one point he even admitted (to my great geeky satisfaction) that they had not fully understood the "youth condition" amendment that meant profoundly disabled children would no longer qualify for NI contributions. Freud! Admitting he was wrong!! In the Lords! *sigh* I liked that bit. I do believe he actually used the word grovel!!!! (I shall be checking Hansard for that one....)

Remember, as per previous posts, amendments can be - and as we've seen - will be, overturned in the Commons. The pledges Freud makes before any vote, however, are binding. The more he makes, the more we "won". The more he compromises, the more worried he is.

By yesterday afternoon he was so worried - about the future of the entire bill - that he took a few blows to avoid a knockout in the second round of Ping Pong.

So when I can tell you what the "Amendments in Lieu" actually gained us, I will, but don't expect fireworks

The amazing, almost miraculous part was that yesterday, we gained much, much more than the sum of a few watered-down amendments of watered-down amendments.

We pushed the Government further than they - or indeed we - ever imagined possible. We opposed. We informed, we had them on the ropes. The public started to wake up, a few journalists came blinking into the light and the entire welfare debate has changed forever. We have a voice, we have made our case and when it starts to become clear that we were right all along, the world will be waiting to notice - not blindly stumbling towards disaster.

We still have a filthy bill, crammed with awful policies. We still have a mountain to climb. But we have shaken the Government out of their arrogant complacency in a way they never imagined.

I can't say what will happen to the bill now. But I can say that from now on, it will be a much, much more equal fight. And that is something the Government never, ever expected in their worst nightmares.

Another crucial Day for Welfare Reform

2012-02-14T10:56:00.000Z

Today, Peers will return to the House of Lords to debate the Welfare Reform Bill.
As you know, the Commons rejected all amendments out of hand, using Financial Privilege as the reason. After much investigation, it would seem that the "rejected out of hand" bit is the crucial point, not so much the use of financial privilege.

Yesterday, we sent the following briefing to peers, laying out the constitutional, conventional and fiscal implications. You can see it here. Feel free to use all or any part. http://twitdoc.com/view.asp?id=37254&sid=SQU&ext=PDF&lcl=Briefing-for-Peers-re-Welfare-Reform-Bill-14-February-2012.pdf&usr=LabourLordsUK&doc=81565766&key=key-pev0i5fiy6kml5w3qku

Today, peers will debate "Amendments in Lieu" of the original amendments peers voted through. You can see them here. http://www.publications.parliament.uk/pa/bills/lbill/2010-2012/0126/amend/ml126-i.5-10.html With just a few hours to go, I'm not even going to try to "translate" them here. Protocol insists that new amendments are weaker than the originals or certainly not as costly. We do however appear to have a full house - every amendment we won has an alternative today and will face a vote. If anyone wants to have a go at clarifying the situation for others, please leave comments below.

From my point of view, the amendments we won were already hopelessly modest. Watering down amendments that are already so limited will leave us with little to cheer. Nonetheless, this is the process we have and we appear to be at a stage where posturing is more symbolic than anything.

I believe the crucial thing today will be the tone of the debate. Just how concerned are peers by the effective neutering of the second chamber? Just how much do they want to assert themselves? How much do they really care about the amendments and the bill itself? How much do they care about us and what will happen to us? How much do they care about their own position as a revising chamber designed to scrutinise and improve legislation?

All of those questions will only be answered when the debate starts. The amendments may be weak, but how hard will peers fight for them? If there is a will to continue, to keep fighting, I believe we will be able to tell today. Even weakened amendments must go back to the commons and another bout of arrogant dismissal may be the final straw.

What would I say to Peers today if I had the chance? I would remind them of

"The awful daring of a moment's surrender
Which an age of prudence can never retract…" TS Elliott

We have reached a tipping point, a moment in time which will mark us - all of us involved - forever. The good work of generations may be undone. The safeguards and dignities sick and disabled people have fought so hard for hang in the balance. For all the arguments for and against this bill, the Government have not convinced. They have not won the argument. They have simply used their majority to get their own way. This is no way to run democracy, no way to design policy.

The utter determination of the coalition to deny any fault with this bill should concern us all. If experts, charities, disabled groups, campaigners, academics, researchers and sick and disabled people themselves can have no impact, no say, then we can trample on any group or all. We can ignore reason, ignore evidence and push that insistence to the point of harm.

At some point we must say "enough". At some point, we have to accept that we have a broken system, broken procedures and that "majority rule" is not enough. If we have no checks and balances, no way to influence outcomes or mitigate harm, then the Commons is effectively a dictatorship - once elected free to wreak havoc wherever they see fit. Nothing in a manifesto, no hint of things to come, just a majority, cobbled together to deny process.

I beg - yes beg at this stage - any peer concerned by either the bill itself or the increasing irrelevance of the second chamber to attend the debate today. To stand for democracy, to defend the "minority". Please attend and vote with your consciences not the party line.

If not today, then when? If not over this most social of bills then when? If not to protect the "most vulnerable" then when?

**As ever, you can watch the session from about 2.30pm in the Lords here : http://www.parliamentlive.tv/Main/Player.aspx?meetingId=10091

The Crossbenchers and Liberal Democrats will again be crucial to any votes, so if you would like to help, then last minute appeals to attend the debate and vote might be helpful.

Can you help Today with Research?

2012-02-08T11:49:00.000Z

Just a little crowd-sourcing post.

It would be awfully helpful if any of you have the time or energy to pull out quotes from peers who have spoken during the passage of the welfare reform bill.

In particular, I need quotes mentioning democracy, the social impacts of the bill and anyone expressing concern over Financial Privilege being used.

Anything from Conservative peers would be helpful, but also Lib Dems and Cross Benchers.

If you find anything good, (not too long if possible) could you post them here in the comments thread? I don't have time to go through links, so a cut and paste job straight to the best bits would be perfect.

More cryptic plotting from Suey but we did OK with the Spartacus Report ;)

xxx

Simplified Version of Draft PIP Criteria

2012-02-07T14:45:00.000Z

Here is the simplified version of the PIP criteria we've been working on.

Draft Pip Criteria - Simplified Version

We hope it will give you all the information you need to decide how you will be personally affected by the change from DLA to PIP. Soon, we will publish a guide to the consultation too, so perhaps we can use this simplified version to start to think about what submissions we might make to the consultation.

Hopefully by later in the week, we can start writing our submissions when the guide to the consultation is finalised. We hope it will mean that many, many more people will engage with this process and we can make our views heard.

If you've already done a submission or don't want to wait, we would like to invite you all to send any submissions you make to us, so that this time, we can keep a public record of as many responses as possible. We will be inviting Charities, DPOs and other campaigning groups to do the same.

Clearly, this will not suit everyone. Some may wish their submission to be private and we wholeheartedly respect this. However, to avoid any suggestion that our views may not be properly considered, we feel it would be helpful to provide a space where they can be collected.

Draft Pip Criteria - Simplified Version

PIP criteria - The Reality

2012-02-06T10:51:00.000Z

The brilliant Sam Barnett-Cormack has been putting together a simplified version of the criteria for PIP (Personal Independence Payments, the replacement for DLA or Disability Living Allowance)

As soon as it's 100% signed off, I will of course be sharing it far and wide. It is designed to help us all respond to the Government consultation on PIP criteria, not as a guide to applying for the new benefit.

Campaigners have argued strongly that we should not be expected to pass law for a new disability benefit until we knew exactly who would qualify and under what circumstances. Despite this, the Government only released the PIP criteria the day before the vote in the Lords on PIP. The criteria are desperately complicated and there was no practical way that anyone - charities, DPOs, media or campaigners could have considered them before the crucial vote.

I just read through our simplified version.

Please remember that we are constantly assured that "No-one who is genuinely disabled has anything to fear from PIP" (Grayling, Miller, IDS)

I won't go into everything, there's no way I could here. I will however, go into how they will affect people like me with bowel disease. This will involve much discussion of pooh. You've been warned.

Under ESA, I simply would not qualify. This is because the "descriptors" ignore pain, fatigue, vomiting and diarrhoea. The only possible way someone with bowel disease could qualify is if they are incontinent. But not just a bit incontinent often. No, I must experience a "full and uncontrolled evacuation of the bowel" at least once a month.

Translation? Poohing yourself at work a bit most days is not a reason not to work. Poohing all over your boss is.

Under the new PIP criteria it appears to be even worse.

If you use a stoma or catheter and manage it yourself, you are not considered incontinent and will get just 2 points. You need 8 to qualify for PIP

If you are incontinent but can clear up after yourself, it doesn't count.

They don't even consider changing the bed sheets or your clothes as "needing help"

The only thing that is classed as "help" is if you literally need someone to clean your physical person.

If you have a stoma it does not matter if you can clean your own bum or not.

The only other possibly way someone with bowel disease might qualify is under "feeding".

If you are fed by tube, as long as you can set up the feeds yourself you will get just 2 points - you need 8 to qualify for the "Daily Living" (previously "Care") component.

**Technical point but I need urgent clarification on TPN under this descriptor (Total Parenteral Nutrition) This was always an automatic qualifier as it involves being fed into a central artery and must be done under strict sterile conditions. The risk of life threatening infection is great. You can however, in theory, be trained to do it yourself at home, in which case, under the criteria it would seem not to qualify.

I would simply ask that every MP reads this article. Do we have anything to fear? I'd say we do. And this is just bowel disease. Is it humane? You decide. Is it based in any way on the actual experiences of incontinence and the costs (financial and social) of dealing with it? Clearly not. Does it mean that my life is not riddled daily with the pain, difficulties and embarrassment of bowel disease? Of course not. If I can feed myself by tube does this mean my life is no longer threatened by infection, malnutrition, possible obstruction or perforation of the bowel? No, if I am feeding myself by tube, it means I am more likely to be at risk of all of those things.

Finally, when it comes to the mobility section, you know when you were writing essays for school and you started quite well, then lost the will to live and ended up concluding it in about three sentences so you could watch Dallas? Well that's how the mobility section of the PIP criteria comes across. It doesn't even make sense and our finest Spartacus minds have not really been able to fathom exactly what the Government intend.

I imagine this means the Government don't actually have a clue themselves.

More soon.

Geek Post

2012-02-04T09:09:00.001Z

Two elements of sheer geekery caused much welfare delight on Twitter last night.

Now we need a caveat : Neither probably mean anything at all.

However, the first rule of our campaign has been : If you know what they're up to, you can write about it and frankly, what they're up to is often so dodgy, the stories just write themselves.

So, first, if you haven't read the article by Jeff King, senior lecturer at the Faculty of Laws, University College London, it's a cracker. http://www.ucl.ac.uk/constitution-unit/news/welfare-reform-and-the-financial-privilege.pdf It's long and very academic, but the crucial part is this :

"What recourse does the House of Lords have?

It is for the Commons tojudge the scope of the privilege in any given dispute, but the Lords
need not accept its judgment without protest. They have two recourses. First, they can
assert by way of resolution that they make no admission regarding the reasons offered by
the Commons, and do not consent to such reasons constituting a precedent. (See 125 Lords
Journals 425; 138 Lords Journals 337; 140 Lords Journals 345). Presumably, they may go
further and positively assert their disagreement while acquiescing nonetheless, just as they
may do with a legal decision they disagree with but grudgingly accept. The second recourse
is that, contrary to the tenor of the Clerk of Parliament’s report on the Lords’ options in such
a case, the Lords do in fact have the right to reject a bill in its entirety. The rule is stated
succinctly in Halsbury’s: ‘The House of Lords may reject a bill in its entirety without
infringing the financial privileges of the Commons. Its power to reject even a bill of aids and
supplies has been acknowledged in former times by the House of Commons.’ (Halsbury’s
Laws of England, Vol.78 (2010) 5thEdn, s.826; also noted inErskine May, 23rd
edn., p.927).
Both these recourses would be strong measures, but can be reasonably viewed as
appropriate responses to the Commons’ attempt to overextend its privilege."

So, basically, the Lords can stamp their feet a bit and delay the bill for a month, or they can throw it out entirely and it will be a year before the Government can pass it. More later on how where when and why - cleverer people than I are looking at the options, what it all means and what is actually likely to happen.

The second piece of sheer geekery came from the reasons given by the Government for rejecting the Lords amendments.

http://www.publications.parliament.uk/pa/bills/lbill/2010-2012/0126/12126.1-4.htm

Quick flick through, Financial privilege, financial privilege, financial privilege, nothing to see here.... Oh wait?? What 's that? 19A agreed to? Except not agreed to at all! Reversed to read just as it did originally, but agreed to??? No financial privilege??

In fact, the time limit and the "youth condition" amendment (NI credits for disabled children, clause 52) were both agreed to. I had heard that youth condition might be accepted, but that makes it all the more surprising to see time limiting ESA in there too. Now geeks way geekier than me started bombarding me with clauses and caveats - "It won't change anything because..... "ahhh well they've only agreed because..... So again, more later when we've (well they've really) unravelled the deep, impenetrable mysteries of welfare, but I thought other geeks might like to join in the puzzling.

It seems to me, that they've accepted a "not less than" addition to time limiting under 19A - this would mean a year would be the least amount of time you could claim cESA, but possibly it could be more. Again, we'll just have to see what the experts say.

So. Much more later, when we know more, but it seems a glimmer or two just rose from the ashes. Or maybe not.

** For anyone who is reading my blog for the first time today, ignore today's post entirely. It is pretty much undecipherable unless you've been following clauses and amendments and points of order for the last 18 months. It may, even then be total gobbledegook and there are only about 12 people who will care about it all anyway, lol

Withhold Royal Assent from the Welfare Reform Bill

2012-02-03T14:18:00.000Z

We have always said that we will do everything in our power to stop the welfare reform bill.

-We lobbied MPs.
-We lobbied grassroots members of political parties and persuade the Lib Dems to oppose an arbitrary one year time limit to cESA.
-When the bill passed to the House of Lords, we lobbied them - I'm not sure to be honest, whether peers have ever been lobbied by ordinary people in the way that we lobbied over the welfare reform bill.
-We highlighted evidence the Government didn't want people to know.
-We built relationships with journalists, persuading them to break the silence over Disability Denial
-We made our own media - social media and used it in a way no-one had seen before.
- We held vigils outside parliament
- We blocked Oxford Street
- We produced our own report - Responsible Reform or the Spartacus Report - so that this government can never say they didn't know the horror of what they were doing and just how little support this bill has.
- We set up a network of "constituency representatives" to lobby MPs and write to local papers.
- We launched "Pam's Petition"
- We protested outside Atos offices

Now, the bill is all but law. Despite misleading parliament and the public at every stage, despite riding roughshod over democracy, flouting the conventions of both Houses and breaching parliamentary protocol, our ministers are about to get their way and democracy is all but dead.

The final stage, for any bill is "Royal Assent"

Someone, somewhere (when I find out who I'll give them full credit) has set up this petition, requesting that the Queen refuses this Royal Assent. Not because "we don't like it" (though we don't) Not because "it's mean" (though it is) but because it is dishonest. Parliament has been misled, the public have been misled and democracy has been trampled.

If we are to do everything we can, we must ask the Queen not to pass this bill.

Please sign it. Whether you are ill, disabled, poor or simply disgusted by the total disregard for the law shown by our government, please sign. We only have a day or two and no matter how anachronistic our political process, it is what it is.

Sign Here

WARNING - TOXIC GOVERNMENT

2012-02-02T10:25:00.000Z

What to say today? We knew that our government had reached levels of arrogant prickery previously unseen in the UK. Yes, even Blair backed down from sending cancer patients to the jobcentre and screwing over profoundly disabled children.

We knew the government had cheated at every stage of the welfare reform bill. First, they utterly whitewashed their own consultation on Disability Living Allowance and lied** about the results to parliament and to the public.

They used made up statistics** to make a case for DLA that simply wasn't accurate.

They tried - in a way never seen before - to rush the welfare reform bill through the Lords before the summer recess last year, despite this meaning peers would have just a few ludicrous days to scrutinise it - they didn't get away with that one.

Then, when peers did return from recess, they took the unprecedented step of holding the committee stage debates in a back room - in Grand Committee rather than the main chamber. For a few nail biting days we weren't even sure if we'd still be able to watch proceedings live or even if the disabled peers would be able to access the rooms!! This is highly unusual for such a large and controversial bill.

When it became clear that the government were going to be utterly slapped down by the Lords, Lord Freud, the Government sponsor of the bill tried to cheat again and sneak through a few amendments to overturn the defeats when everyone had gone home. Again, totally unprecedented.

After 7 - count them - 7 amendments passed (and two measures were accepted by the government in advance AND they made significant concessions over DLA reform) the government simply whipped their members to overturn every one of them and then used financial privilege to make sure the bill didn't go back to the Lords for further consideration!! Guess what? Totally unprecedented For this to happen normally it must be decided before a government are totally humiliated over unsound policies, not after!!

How many times can I use the words "Highly Controversial" or "Unprecedented"? And over one bill? To translate, this Government have ridden roughshod over any thread of democracy we might have thought we still had in the UK. They have treated Parliament and the House of Lords with complete contempt. They've cheated** and steamrollered and sneered their arrogant way through the whole process, believing they were above the law, that no-one would hold them to account, that no-one would notice.

Well we noticed, and we made a fuss and we will hold them to account for every single person hurt by their policies. Every day, week in, week out, every death, every person who loses their home, every family left with too little to buy food, every over-run soup kitchen, every paraplegic declared "fit for work" every cancer patient that dies expected to look for work - we will expose them all.

We tried everything to warn them before it was too late. The great irony is that we played fair. However much they cheated and lied, we kept to the truth, we stuck with evidence. We played the ball not the man. We showed them for what they are.

And just in case anyone thinks "Ach well, it's only welfare, we ALL support using any means possible to give the scroungers a good kicking remember this :

THE NHS BILL AND THE LEGAL AID BILL AND NUMEROUS OTHER PIECES OF LEGISLATION THAT WILL TOTALLY TRANSFORM THE FABRIC OF OUR SOCIETY ARE GOING THROUGH THE SAME PROCESS AS WE SPEAK.

However much this coalition would like us to forget, they have no mandate for these changes. They were NOT in either manifesto, the Conservatives did NOT win a majority and the Lib Dems opposed many of the measures they are now allowing to pass through parliament. None of these changes to Disability Living Allowance were in either manifesto and as everyone knows, nor were the NHS reforms.

Are we going to let this happen? Are we going to give up on democracy altogether? Are we so cynical, so fatigued by corruption that we're just going to sit back with a sigh and give up?

I'm not.

They can carry on living in their little Westminster bubble if they like (and clearly, they will use any means to do so) but times have changed. The world has changed. Now, we can expose their lies in seconds. And we will. And the public will only hate them so very much more in the long run for this arrogance.

**Today, I can use the words "lied" and "cheated" and "made-up" because that's what they did. They lied. And they cheated. And they made things up. To get what they want. All those weeks drafting the Responsible Reform report using words like "misled" and "mendacious" and "inaccurate" made me want to scream when what I knew I was saying and they knew what I was saying was : "You're lying cheats"

So sue me.

Vote with your Hearts

2012-02-01T09:14:00.002Z

Today, at 12.30pm the welfare reform bill will return to the House of Commons.

Let's be very clear - it is a dangerous, incomplete bill based on flawed evidence and unpleasant ideals. It is vast and impenetrable - most of the ministers arguing for it have very little understanding of the detail within it. Yes, that's right, they don't understand the details or effects of their own policies.

The welfare reform bill will affect every one of us, not just the "feckless scroungers" the government have led you to believe. Child benefit will be cut, tax credits for "hard working families" will be cut, tax credits for disabled children, NI credits for disabled children, we will all eventually be transferred onto Universal Credit where both parents will be expected to be in full time work when their children reach the age of 12. Everyone will face sanctions.

Make no mistake - this bill fatally erodes the already inadequate social security provision we have in the UK. For all the big numbers the government like to toss around, we have the lowest levels of benefits and the toughest sanctions of any developed nation. This bill is the tipping point. People are going to die and we've done everything - and more - that we possible could to highlight the most dangerous areas.

The House of Lords is described as:

"A forum of expertise, making laws and providing scrutiny of Government"

And so we've found them to be. The Lords is packed full of ex-CEOs of charities, disabled members and those who have enjoyed full and varied careers before becoming peers. They analysed every line of this bill carefully and thoughtfully. They were concerned by the same areas that concerned campaigners and charities alike - the dangerous parts. In fact, they were concerned by many, many more aspects of this bill and only the most disgusting, pointless, cruel clauses have been overturned. Many amendments were argued for passionately yet withdrawn after reassurances from the minister.

And we are still left with a dangerous bill. It may just be slightly less dangerous than it was.

-What has been amended? Well, if you fall desperately ill, you will now have at least 2 years to recover instead of 1. Frankly, that's pathetic, you are just as likely to be ill with Parkinson's or MS after two years as you are after 1, but it's something. (Time Limiting contributory ESA)

-The most disabled children, who will never work will keep an entitlement to NI credits if the Lords amendments stand. This makes the difference between a degree of independence in adulthood or total dependency for the rest of their lives.

-Tax credits for disabled children would not be halved if the Lords amendments stand.

-Cancer patients would not have to look for work while suffering through chemotherapy and radiotherapy.

-Single parents would not be fined £100 to gain access to the Child Support Agency.

-Child benefit would be excluded from the Universal Credit benefit cap so that children are not penalised for the decisions of their parents.

Do you see how pathetically modest these changes are??? Can you believe we're even arguing about whether to send cancer patients to the jobcentre or not? Does that not tell you everything you need to know about this bill?

If even that doesn't convince you, then remember, the entire disabled community are united against this bill. Not just a few campaigners, but every national charity, every campaign group every church group, every poverty group, everyone who actually knows the details of it. They represent an electorate of millions and every MP going in to vote today will have received thousands of pleas not to overturn these amendments. The Government claim to be working with disabled people. They are not. They are meeting with disabled people, their groups and charities, and then ignoring them. Scope, Mind, Mencap, Macmillan, Sense, Papworth Trust, RNIB, The Disability Alliance, the Disability Benefits Consortium... the list goes on and on and on. No-one with any real knowledge supports this bill.

The crossbenchers in the Lords are not political. They heard the "evidence" presented by the government and they heard our evidence and overwhelmingly, on every issue that was overturned, they voted with us.

So what sickening arrogance is it that says "We don't care and we will do exactly what we like"? What kind of people believe that in a bill of over 175 pages there is no room for improvement at all? Most disgustingly, what kind of people look at the very modest changes above and believe that "We can't afford it" is a valid argument? Seriously? What kind of people? What kind of brains are so weak, so unimaginative, so mis-guided and dull that they cannot think of anywhere but cancer patients and profoundly disabled children to save a few pounds??? Should we not have looked everywhere else first? Should ministers not be refusing their bloody salaries before they take money from disabled children??

Yet today, the DWP expects Conservative and LibDem ministers to saunter into the house of commons, without having heard any of these arguments and vote as they are told to. To vote with a few misguided DWP ministers against the will of the entire sick and disabled community. Against sense, against reason, against safety. The painstaking work of 18 months of reasoned argument all undone in an afternoon - if they're lucky they might even get away for a quick 9 holes before supper!!!

It disgusts me.

This is not democracy, this is utter cowardice. This is not sane it is utter madness. This is not safe.

And so, as you might expect, I implore MPs to vote with their consciences. Not to follow the party whip but to think of loved ones who have suffered terrible illness and ask themselves if that loved one could certainly have returned to work within a year? To ask themselves whether or not they could look for work if they had a child so profoundly disabled that they needed 24 hour care? Do not inflict on us what you would not accept for yourselves or your families, please.

I promise you, now, today, that this bill will be an utter disaster. It is like watching a slow car crash. By the next election, hundreds of thousands of the most vulnerable people are going to be affected by it and the headlines will be unremitting. At the very least, those of you who vote to keep the Lord's amendments today will have gone some very small way to making it less of a disaster.

And those that don't? Well shame on you.

Coalition Confusion over Disability now in Sign Form

2012-01-30T13:45:00.000Z

Many thanks to @queerpup for sending me this picture. Gives a whole new meaning to "Turn hard to the right" Doesn't it?

Email Your MP To Support Lords' Amendments to #WRB

2012-01-30T09:53:00.000Z

As many of you will know, the Welfare Reform Bill returns to the House of Commons on Weds, Feb 1st. Ministers have assured us that they will overturn all of the modest amendments we've fought so very hard to achieve. They will do this by using the archaic and undemocratic processes of financial privilege and the Parliament Act. All we can do at this stage is appeal to the consciences of our constituency MP's. Ask them to look very carefully at the amendments and if you wish to personalise the template letter explain to your MP how you as their constituent will be affected by the WRB.

We have until wednesday to persuade those MP's who have heard our arguments for many, many months that we're not asking for the world, we're not seeking to wreck their bill, we just need the bill to be safe. We understand how exhausted everyone is, but this is vital if we are to stop all our hard work from being undone at the brush of an arrogant pen. Please take action now!

PS: Sorry for the formatting. It turns out that two spoonies, with one functioning laptop and no functioning body parts or brains find it a tad tricky to format properly!

What can we do Now?

2012-01-27T11:32:00.000Z

So, as you may have heard, the welfare reform bill will go back to the Commons on Wednesday 1st Feb. That's just one day after the third and final reading of the bill in the Lords.

We are all beyond exhausted. Many of us have made ourselves terribly unwell as we fought the worst aspects of the bill. It seems a cruelty to have to prepare for the commons so quickly, but in a fight that has been unpleasant and cruel all the way through, we should expect no less.

It means that spartaci across the internet must summon up a few more ounces of effort for a little while longer.

Since the Responsible Reform report was launched, we now have a Facebook page and a website. People with their own ideas and plans can join the groups and help with many projects - from going through the new PIP thresholds to writing emails. Do take a look if you have some energy to help.

Today, I'm working on a template email that the wonderful people at Church Poverty Action are designing for us. You will simply have to put in your postcode and a letter tailored to your own particular MP will appear. If you can personalise it with your own experiences of ESA or PIP, all the better, but I should have the template for you to use very soon.

In the meantime, it would be very helpful indeed if you wrote to your local paper. They usually have an email address you can use to send letters to the editor. If you feel able to call up and see if they would like a short article, all the better, but many people don't yet know what the welfare reform bill will mean to them, so something very simple pointing out the changes and urging people to contact their MP would be a good start.

Local press have more impact than we might think. MPs worry when they see their local papers full of objections to a particular policy. Their first responsibility is to their constituents and if majorities are tight, pressure can have more effect than in a national paper.

We have a network now that covers most of the country, so let's see how many letters we can get published before next week.

You may have noticed that Scope have joined forces with 38 Degrees to produce an email campaign asking MPs not to use parliamentary privilege to override the amendments to the bill. If you are on their mailing list, please do take a moment to join the action.

Finally, today, a letter to the Guardian from 50 LibDem candidates urges their MPs to let the amendments stand too. We are no longer alone and even the mainstream press are putting pressure on parliamentarians that simply wasn't there a few weeks ago.

We might be exhausted, we might feel that we cannot go on, but this was always going to be a battle we would have to fight to the wire. The very fact we are fighting for amendments at all is a miracle. Good luck Spartaci!! Not long now and every last shred of effort you can find might make the difference.

Hallucinating "Though The Round Window"

2012-01-26T12:34:00.000Z

How surreal have things become when Nigel Lawson, Geoffrey Howe and Leon Brittain, stalwart Conservative figures from the 80's, are voting against the more brutal elements of a so called 'compassionate conservative' government in 2012?

The distasteful truth is that neither proposals for PIP would have passed, nor would the social fund have been abolished without the Liberal Democrats who voted overwhelmingly with the government.*

When you have a bastion of all our childhoods not even bothering to turn up to vote on whether to keep National Insurance entitlement for profoundly disabled children and staunch conservative figures opposing other issues in their own government's Welfare Reform Bill we must ask ourselves what kind of opiate induced haze has led us to believe this is happening?

Are we hallucinating, is it a result of our exhausted, fevered brains or did Floella Benjamin from Playschool really vote more cruelly than Leon Brittain? I think we need more sleep because currently the idea that the 70's equivalent of Mr Tumbles didn't even bother to turn up to vote to keep benefit entitlement for disabled children is not one our brains can cope with.

From the sickbeds of Kaliya and Sue

*Amendment 50e (calling for pause to trial PIP properly) Lib Dem's for 2, against 65
Social fund Amendment 62bja (ring fencing social fund) Lib Dem 1 for, 67 against

Sacrifice More!! Hang the "Cheats" out to Dry!!

2012-01-25T13:56:00.000Z

There is a huge problem in trying to provide an evidence based approach to welfare reform.

Most people just don't want to believe the evidence.

"But if you'd just admit how many people are "trying it on" You'd get further" "If you'd just admit that fraud is much higher than official figures suggest, the genuine could be better provided for" "Why is it so hard to admit there are millions of cheats?"

So here's the problem. No matter how hard they try, no matter how cruel the policies they design, no matter how many rocks they search under or plugholes they peer into, no Government has ever been able to find this mythical army of feckless, workshy sick and disabled people. Well, not until they designed ESA obviously, where they just defined everyone as fit for work and had done with all that silly evidence nonsense.

Official DWP fraud rates stay stubbornly at half of one percent. 0.5%. From Peter Lilley in the 90s to James Purnell on the 00s to Chris Grayling today.

Nonetheless, successive Governments have been determined that they can find a further 4000% of people who are really absolutely fine. 20% is the figure of choice. From the Benefit Integrity Project in the 90s to PIP now, ideologically, politicians, blessed with rude good health and an arrogance born from ignorance have just not been able to bring themselves to believe the numbers suffering from illness or disability in the UK.

I hear it all the time on comments threads "3.2 Million??? Disabled??? Get outta here!! No WAY are there 3.2 million sick or disabled people. (Actually there are 10 million but this causes such pained outrage I try to break them into this figure gently. 3.2 million is just the number claiming DLA)

They forget that we are still largely hidden away, stuck at home or not integrated into their workplaces. They forget, that even when we are, we may not wish to tell people about our disabilities.

Surely, after 20 years you might think governments would have admitted their folly, educated themselves, maybe read a bit of evidence or looked at a few diagnostic figures?

Nope.

For those who find 3.2 million an impossible figure, in fact it is much much higher, but DLA is massively UNDERclaimed. The endless forms and questions and appeals just put most people off. If the benefit was offered genuinely to all those who need it, the amount we pay out to genuine claimants would rocket.

So for those who tell me I'd do better to admit a much higher degree of fraud than official figures suggest, I say to them that the burden of proof is surely on the accuser? Off you go, get out there and find these hoards of cheating fraudsters - because 94% of calls to the benefit fraud hotline turn out to be malicious and almost none are found to be fraudulent.

Or.....(whisper it).... did it ever occur to these Disability Deniers that..... they might just be wrong?

To the Lords

2012-01-22T08:56:00.000Z

(Written from hospital)

I think it's important to say "thank you" to all those peers who read and responded to our letters and emails. For months now, we've been sending them evidence, urging them to vote or abstain, trying to recruit them to support our causes and flooding them with last minute, urgent appeals.

I believe we should thank all peers, whether they voted the way we wanted them to or not. They all received thousands of letters and emails and at times, it may have been frustrating. I hope that most realised that it was our desperation to be heard that made us so prolific.

If template letters became irritating, I hope they will remember that many people we fight for simply cannot write their own. Those who are profoundly disabled or those with learning difficulties were still aware of what was being done in their name, but often had no way of expressing it. In our cause, template letters were not a lazy response, but often a vital expression of democracy unseen before.

If some appeals were too emotional or dark, then I hope they will remember that disabilities come in a million packages. Those who are mentally ill or desperate with pain and fear need to use their voices too.

So "Thank You" from me. We had no rule book, no guidance, we were just ordinary people trying to be heard. Thank you for listening, thank you for judging with an open mind, and thank you for giving us just a little hope that there is some way left to change things for the better.

Sue Marsh

So How Am I?

2012-01-20T07:28:00.001Z

Well I can confirm categorically that Arbeit does not macht you frei.

Quite the opposite in fact. Far from "freeing" me, work has put me in a hospital bed chained with plastic tubes.

I'm almost certain none of the politicians so glibly deciding our futures know what the "spoon bank" is. If you have a long term condition, then you only have so much energy for any given day. When it's gone it's gone - WIGIG. Now that doesn't mean you can't borrow energy, but just like the deficit, it has to be paid back.

When you borrow energy (or "spoons) you are paid in adrenaline. The adrenaline convinces your body that all is well. OK, you're a little too shrill, a little too twitchy, you're eyes a little too bright, but I'm sure Mr Grayling wouldn't have noticed any of that as he sat talking to the composed little scrap with her make up just so.

After a while, your natural instincts try to step in. "Go to bed" - the thought unbidden takes you by surprise. "Just close your eyes" - the siren call of rest as the adrenaline ebbs for a moment.

In my case, I pay in immunity. As the weeks went on, I got a cough here, a splitting headache there so piercing it made me cry. I got neuralgia, sinusitis, the cough turned into a chest infection, I got spots in front of my eyes, atrial fibrillation. Little immune complaints popping up all over in protest at my unsustainable spoon debt.

And then I stopped.

When you stop, the adrenaline ebbs away. For a day or so you feel sad, but you're not quite sure why. Then you get sick. Really, really sick. the adrenaline blanket that had been keeping all those "niggles" that you ignored through gritted teeth at bay, is stripped away. My chest infection turned into something worse, my temperature started spiking, my face puffed up like a football, My ribs started screaming in pain.

And here I am. In a side room on an acute medical ward. So infected, such a blob of immune horridness that I am not safe to be around other humans. I must be screened for scary things, because scary things happen when you are "immuno-compromised". This is not the face you all saw all week eh?

I'm not the only one. We have at least two other spartaci that I know of in hospital - one in intensive care. Another collapsed two days ago after spending a week, non stop, sitting at his computer, building us a spreadsheet with one painful hand. Kaliya hasn't been able to speak for over 3 months as her oesophagus has collapsed on itself.

This is the reality of sick and disabled people fighting back. I can put it in very stark, unemotional terms, but that is what it takes. There is no doubt at all that some of us did this knowing that our lives were at risk. What on earth is happening in 2012 when sick and disabled people will go to such lengths to be heard???

Yet most of our media sit comfortably in their glass and chrome towers, desperate to be convinced that we are just a few snatching, greedy, shirkers. All we want is to "protect our special interest group" or "not take our share of the pain" You could see the irritation last week when they were forced to report that all may not be well with the welfare reform bill. Most took the government line. "But Sue, you must agree that DLA needs reform?" When I knew they didn't have the first idea why it might - hadn't read the research, hadn't done their job.

They ignored the coalition we built, they ignored every major charity backing the Responsible Reform report and issuing press releases and statements in support. They ignored the rush of Blairites to confirm that actually, some very bad things are happening. Not one did a serious piece on our research. Not one. they all wanted "stories" - the soldier with his leg blown off refused benefits, or the cancer patient who dies just hours after being found fit for work.

We wouldn't give them. We refused. Because that's not what the Spartacus Report was about. There were at least 5 serious news stories in it, and if that wasn't enough misery-porn for them, then our story will just have to wait.

I'm "in the best place" - antibiotics and saline drips and painkillers are oozing into my blood. Everyone is very kind. The nurse who admitted me knew who I was and actually grabbed my wrist to check my name - "Are you Sue Marsh??? You??"

I have no idea if we will be able to do what we did again. We knew it was unsafe. At some point, we need the more able to take some of the load. We need them to see what is being done in their name. We need them to act. Because we can only act for so long.

A PR win for the Government but an Actual Win for Disabled People

2012-01-18T07:55:00.001Z

This will be a long post, but there's a lot to say!

Firstly, go back to 5th Januuary. We had no hope. ESA was going to be limited to just one year, DLA was to be abolished and replaced with PIP, which we felt were unfit for purpose and designed without the genuine input of disabled people and their groups. We had no media, no polticians, no voice.

On the 6th January, the Boris Johnson story broke (due to our press release) and everything changed.

Suddenly, the Mail and the Telegraph and the Mirror were reporting the first hint that all may not be well with the Government's plans for PIP. The story built over the weekend and then, in a blaze of glory and an unprecedented social media campaign, we launched Responsible Reform (The Spartacus Report)

Kaliya and Sarah and I and all the others involved in writing and producing the report could never in a million years have known how successful it would be. A welfare report? Trending on twitter? Getting millions of reads and crashing servers? Miraculous.

All the while we were preparing Responsible Reform we thought it would be ignored. We did it to go on record, to be heard. We did it to ensure there would be a lasting account of the very grave concerns disabled people have about the plans.

Did we think charities, celebrities, academics and medics would support our work so resolutely? Did we think the media would start to push ministers on their plans for reform? And most unlikely, did we think we would end up with an amendment under debate in the House of Lords, requested by us and defended by disabled peers in the House? Never in a million years. But we hoped.

We always knew that the more momentum we could build - and remember this was just momentum created by ordinary people - the more pressure the government would face. We could never, ever have known they would face this much pressure and be forced to move so far.

At the 11th hour - oh but what a shame it couldn't have been earlier - the entire disabled community came together with one voice and that, was too much for even the coalition to ignore.

It is crucial to understand the process of yesterday. Amendments are not binding and as ministers have assured us, will be overturned when the welfare reform bill returns to the House of Commons. They are embarrassing PR blows, little more. What IS binding are the speeches Lord Freud makes just before a vote. It is in that moment that peers get to judge just how far the Government are willing to compromise. If it is far enough, the vote will either be withdrawn or will fail. As I tweeted just before the vote "LISTEN VERY CAREFULLY TO FREUD'S RESPONSE"

As Freud started to speak it was clear that his language was carefully scripted and for once, contained detailed commitments to compromise. At this point, I start to realise that he is moving significantly - I wonder if it will be enough to convince peers.

Here are my tweets as Freud is laying out his compromise :

"He's promising stuff, but will Lords believe him??? #wrb #spartacusreport

"He's actually giving us almost everything to avoid a vote!!!!! #wrb #spartacusreport. Remember this bit is legally binding

"WAIT EVERYONE!!! HE IS GIVING UP TO AVOID A VOTE.#spartacusreport #wrb

"Remember!! He is saying all of this very carefully under oath. #wrb #spartacusreport

So how accurate is that? What did we ask for and what did Freud promise?

Here is amendment 50E, Clause 80,

Clause 80
BARONESS GREY-THOMPSON
BARONESS WILKINS
LORD LOW OF DALSTON
BARONESS CAMPBELL OF SURBITON

50E*

Page 58, line 26, at end insert—

“( ) The Secretary of State must lay before Parliament an independent review of the plans for implementation of the assessments under section 79 before the provisions are brought into effect, and such plans must in particular provide for—

(a) a trial period before any assessment process is implemented fully for new applicants and those transferring from DLA;

(b) disabled persons organisations to be involved in formulating the assessment process.”

Effectively, we got some of all of those things, without an official pause. In fact, we got more. Here are the key points Freud conceded and what they mean.

- A formal consultation on assessments to run for 15 weeks and the key point "regulations which we will lay later this year, will be subject to the full affirmative procedure of both houses."

This is crucial. It means that all the details still missing on assessments, weightings and entitlement criteria will have to be agreed by both the Commons and the Lords before they can go ahead. This is what we most needed and is a huge concession. It means the Government cannot sneak unfit plans through without the agreement of parliament. I can't stress enough what a win this was and how resistant ministers had previously been to the demand.

-Freud went to to promise to test the assessments first, emphasising that "if for any reason [testing is] insufficient we will carry out further testing

-In response to Baroness Browning, Freud promised to "personally look at the impact" PIP would have.

-The Implementation Development group allows disabled people a say in design and implementation. Freud promised not to scrap it in 2013 but to carry it forward. He pledged that "There have been, and there remain, significant opportunities for involvement from disabled people and their organisations, and significant opportunities to influence our proposals to ensure we get them right."

- He promised to test all systems in a "model office environment" before they go live. This means the systems must work before they are used on real people.

- He promised that anyone taking on the contract for assessments must do the same and confirmed that "We expect them to work with disabled people on the design of their processes to improve customer experience before during and after implementation."

Freud goes on to lay out how they will delay the implementation and in effect, trial PIP in a small way, rolling it out very gradually with checks and reviews at every stage. This is very significant and a million miles from a total rollout in April 2013.

He says "As well as getting the whole development process right, I recognise the value in moving away from a big-bang approach to implementation which would see both new claims and reassessments beginning in April 2013" The next section lays out exactly how the implementation of PIP will now work.

"We will limit the number of new claims for personal independence payment to a few thousand per month for the first few months of implementation. This will allow us fully to trial all the processes in a truly live environment.Once we are satisfied that the new processes are working as intended with this reduced number, we will allow all new claims for personal independence payment to enter into the process. We will continue monitoring and reviewing the processes to ensure they are working effectively and appropriately and to see how claimants are finding the experience. We will begin to reassess existing DLA claimants in a co-ordinated way six months after the initial implementation. Again, we will stagger this process. We expect the first stage of reassessment to start in the autumn of 2013, beginning with individuals on a DLA fixed award who will need to renew their claim and those claimants who report a change of circumstances on their existing DLA claims.

At the same time, we intend to conduct a pathfinder trial reassessing individuals who would not, in the ordinary course of events, come up for reassessment. We expect the pathfinder to run for around three months to ensure the processes for identifying and contacting people and taking them through the claim processes are working satisfactorily. Allowing a small number of existing DLA claimants to advance through the reassessment process ahead of full national implementation will enable us to be sure that our approach to engaging these customers into the claims process is working effectively ahead of widening the selection. Also very relevant here is the independent review and report on the assessment that we are legislating for in Clause 87."

-So basically, PIP will be trialled, on a small number of new claimants. Then all new claims, with a commitment to review at every stage. Only if everything is working will existing claims begin the process and that, 6 months later.

-He went on to promise two independent reviews, at 2 years and 4 years with a third promised if any concerns are expressed at year 4. He stressed that this is a "Firm commitment from me and my ministerial colleagues"

He concludes by saying "In reality, in the way that we are structuring this, we are trialling it in any real sense; we are doing it on a gradual basis. If we do it in this way, we will get the assessment and wider benefit processes right; we will involve disabled people and we will learn from the earlier delivery of the benefit."

So, what does all that mean? It means the Government had to make very considerable compromises to avoid another embarrassing defeat. Are they significant enough for us? Of course not. Would they ever have been? Of course not. Were we ever going to stop PIP 12 days before the vote? Never. Do we trust this government to listen properly this time? Why would we?

But, Freud and ministers are accountable for every promise they made. If they renege on even one, we can challenge it.

Crucially we were heard, not just by nervous ministers, but by the public. There is now real disquiet over plans to cut DLA for 500,000 disabled people. The atrocious arrogance we have seen for so long from politicians, simply must be tempered from now on. We shone a spotlight on these reforms and now they must be implemented in full view.

Does it matter that they "won" the vote or does it matter that we made PIP safer for millions? That any details or changes must be agreed by the Commons and the Lords? Did we want the PR coup or did we want concessions?

I wanted concessions, any concessions, but I never thought we would get them.

Peers got hundreds of letters and emails. The pressure you put on Government was truly extraordinary and make no mistake, this is a Government unwilling to shift on even the smallest details. I have never seen ordinary people - not politicians or think tanks - ordinary people, affect actual democratic change in the way I saw last night. Never.

And the peers - what of them? Well, just days before a vote, they heard our requests, tabled an amendment and fought. For us. It was a stronger amendment than any before it. It focused on us, on disabled people and what we needed to start to trust any process affecting us. They fought passionately for an amendment it would be very hard to win. That in itself is significant in a world of political positioning.

Perhaps one of the most significant statements came from Lord MacKenzie, Labour Lord

"I have some responsibility for having introduced the employment and support allowance so I cannot claim any such accolade. It is clear that the assessment process has not been working and has caused... distress to too many disabled people"

As an unexpected bonus, Labour finally taking ownership for the failures of ESA is a step forward.

Finally, how did the vote go?

Not Contents 229 - Tories 150, LibDems 65, crossbench 13, Other 1

Contents 213 - Labour 160, LibDems 2, crossbench 39, other 12

There is no easy way to say that those figures are brutal. We won the crossbenchers by 3 to 1. We won the argument. On evidence, politically impartial peers voted for a pause to PIP. Lib Dems did not. (With the notable exceptions of Bns Tonge and Bns Doocey ) Even the Tories did not turn out in numbers to match Labour. But the LibDems were whipped - told how to vote - so we could never have won. Did they make Freud shift so far in exchange for a win that would save the Government embarrassment? It doesn't really matter. They signed away the Disability Living Allowance. I hope they sleep well.

When I took on the Spartacus Report, I hoped that in some small way it might put pressure on the Government. That somehow, it might make people think. I never in a million years thought it would result in real changes to the plans for PIP. It did, and every last one of us should sit back in amazement and really take in what we did. We embarrassed the Government. We embarrassed them so much, they would certainly have lost yesterday if they hadn't moved significantly. We won three amendments to ESA. We changed the structure and implementation of PIP. We had just seven hours to publicise an amendment and ask peers to vote on it. With ESA we had 15 months. Nonetheless, the Government still only won by the narrowest of margins, a mere 16 votes.

Did you ever - ever - think we would do any of that?

CLAUSE 80 - AMENDMENT 50E

2012-01-17T08:25:00.000Z

On Friday, I went to the House of Lords.

(For a second may I digress? It was utterly beautiful. For a big fan of history, a politics geek and art lover, it was almost too much stimulation at once. I sat on a bench!! Hopefully archaic looking guards with big swords aren't on their way to cut off my head for that?)

Anyway, back to terribly grown up, sensible stuff.

I went to meet "The Amendment Lords" (7 yr old asked if they were Jedis and what colour light sabres they had.)

With a clutch of emails of support from charities and groups and of course, every one of you there with me in spirit, I explained why we felt there had to be a pause to PIP.

-I explained how worried we were that legislation would pass with so few details decided. I said we had lost trust in politicians to act with transparency - and even integrity. Leaving so much in their hands to decide under secondary legislation, later, means we don't actually know how the law they are passing will affect our lives. Or the lives of our carers.

-They asked me what the single biggest concern was. I hope you agree that I suggested it was fear over another ESA style mess. I argued that unless assessments were designed by disabled people and took all medical evidence into account, they would just add to the disaster we already face with WCAs (the assessments used to decide Employment and Support Allowance)

I suggested that in any case, the ESA assessment process was already creaking under the strain of the sheer numbers of people the DWP want assessed. In my opinion, the DWP would find it impossible to train enough extra people to assess 3.2 million DLA claimants anyway. I suggested a paper assessment as a first stage, and only once all medical and social evidence had been considered should an assessor decide whether or not to conduct a face to face assessment.

Most importantly, I begged them not to roll this out until we could make sure we had a policy that would work.

ESA is a three year experiment using real people as guinea pigs. The DWP admitted there were serious problems with it, yet maintained it was better to modify the ongoing process rather than pause it while they got it right. That means that every day, for three years, vulnerable people have been let down, denied support they need and been forced through stressful appeals. While we wait for Harrington to decide our futures, every day, people are suffering.

We can't let that happen again.

***********

This morning, the following amendment has been tabled :

Clause 80 - Amendment 50E

BARONESS GREY-THOMPSON
BARONESS WILKINS
LORD LOW OF DALSTON
BARONESS CAMPBELL OF SURBITON

Page 58, line 26, at end insert—

“( ) The Secretary of State must lay before Parliament an independent review of the plans for implementation of the assessments under section 79 before the provisions are brought into effect, and such plans must in particular provide for—

(a) a trial period before any assessment process is implemented fully for new applicants and those transferring from DLA;

(b) disabled persons organisations to be involved in formulating the assessment process.

We have just 7 hours to make sure that as many peers know about it as possible. To show them that it has a coalition of support difficult to ignore. Charities, politicians and journalists are all ready with statements and letters and articles. TV interviews are lined up all day. We have done all we possibly can to make sure that if the Lords decided to table an amendment expressing our concerns, we would be able to tell peers about it.

The reform of DLA will cost £675 million. Half a million disabled people will lose support. We have made a very strong case in our report, Responsible Reform, arguing that ill conceived reform will simply end up costing the taxpayer hundreds of millions more in costly appeals and further strain on NHS and social care budgets.

Please, write emails, tweet, contact journalists, blog, plead and persuade. Use evidence, tell them how it will affect you, urge peers to attend the debate and vote for amendment 50E.

We MUST get this right. Lives and futures depend on it. The lives of those very same "vulnerable" people the Government have pledged so publicly to protect and support.

We are just asking for reform to be safe. At the very least, surely that is not too much to ask?

Consultation - Urgent advice please

2012-01-16T20:57:00.001Z

You wonderful, wonderful Spartaci!!

What an amazing, incredible week. Today, Lord Freud, the sponsor of the welfare reform bill in the Lords had to write a letter to peers answering our report!! I never, in a million years, thought I would write that sentence.

Tomorrow, I have possibly the most exciting news yet - I bet you can't believe it's even possible can you? But it is. The momentum has knocked me sideways - I'm humbled by the response from every corner of the web, from journalists, from unions, from politicians from charities, flooding in to my inbox so quickly I can't even reply.

And the evidence!! I have been sent emails and FOIs and links from everywhere - it feels like I'm watching the Government's plans for welfare reform crumble before my eyes!

My life has disappeared. I haven't had a "normal" day for about two months. I haven't washed up, I haven't cooked, I haven't spent any time with my astonishing and supportive family and kids. My 89 year old Dad has been ill in hospital but refused to let me stop doing this. I've been so ill, I have barely known my own name.

But I've done it with delight. I've done it with such enormous pleasure and wonder. Can you imagine a phone call from Newsnight? Or a chance to go against Miller? Or a chance to answer Lord Freud, in public?? How could I ever not do any of those things? I'd never forgive myself. It's worth having no clean clothes, a kitchen full of takeaway boxes and absolutely no control over any minute of any day. I feel rubbish all the time anyway, I might as well feel rubbish and excited.

But there is a bit of a flaw in the plan. We planned everything to the last detail, but we never expected to get this chance to actually be heard. We always thought the report was about putting our case - we never expected anyone to listen. After all, very few listened before, did they? So why would it change?

And now, I need to know what you want me to do next? I raised funds to put out a report, but in the last few days I had to use money to get to London, to lobby, to get taxis, to pay the £120 extra phone bill I built up.

Tomorrow, I might have the chance to go on a news programme - just two weeks ago I would never have thought it possible, and I'm learning fast, that these things don't always come off - but if I do, what will I do with my kids? I've already used up all of my favour bank about three times. What will we eat? I don't have any money, and I don't have permission to use yours!!

What should we do?? I'm prepared to keep doing this - I want nothing more than to make a case against these reforms on a platform that will be heard - but how do we fund it? Obviously a lot of news channels and papers pay for expenses, but I have to pay to get to meetings. (I am an epic blagger mind you ;)

I need to get my house straight - my family are beyond wonderful, but really, this is taking the.....

I hate this bit, but the truth is we have no money. We're in debt :( I started to go through my account yesterday to see what I needed to add to the expenses list and I was shocked to find I'd spent £550 from my own account! Just on convenient food when I'm too busy to cook for the kids, on petrol, on printer ink, on phone calls. Embarrassingly, I don't have it.

I don't know what to do! In the middle of such chaos it seems awkward to mention that there are practicalities, but if I don't write this now, I'll be spending your money - and increasingly mine - getting more in debt and I don't even know if you want me to!!

So please, just leave comments below and tell me what you think we can do. I have no idea where I stand any more on donations - this was about printing and distributing the report. Advice and suggestions would be good.

Do we carry on with the fund? Is there any other way of doing this?

It might all fizzle out after tomorrow and the DLA votes. If so, I'll come home, go to bed and sleep until Spring. But if not... What then?

To be utterly clear, I'm happy - honoured even - to do this. But I have to make it as easy for my family and my health as possible.

Please leave comments,

Sue

Lord Freud's Letter to Peers re Spartacus Report and our Response

2012-01-16T17:59:00.000Z

Today, Lord Freud has written to peers with a response to the Responsible Reform (Spartacus) report. This is the full letter, and our response to his claims :

16th January 2012

Dear Colleague.

I understand that you may have received a report recently entitled

I think we all agree that the reform of DLA is overdue, we just disagree that PIP is the right reform

Responsible Reform suggests that the consultation period, following the publication of the 'Disability Living Allowance reform' consultation document, was insufficient. The Government's Code of Practice on Consultation recommends a minimum 12-week consultation period for public consultations, unless there are good reasons for a limited consultation period. The formal public consultation on DLA reform ran from 6 December 2010 and closed on 18 February 2011. While we fully aspire to the code's recommendations, we felt a 10 week period was adequate, given that the consultation was limited to general principles only, was preceded by extensive engagement with a wide range of stakeholders and disabled people and will be followed by further extensive consultation on the detailed proposals.

The consultation asked specific questions that would affect the lives of disabled people, it was not "limited to general principles only." This letter does not explain in any way why the consultation period was shorter than recommended under the Code of Practise on Consultation. If anything, respondents felt the period should have been longer than 12 weeks as a "reasonable adjustment" to those disabled people who needed extra help or support to participate.

As outlined in the 'Disability Living Allowance Reform' public consultation document, the Welfare Reform Bill sets out the high-level legal framework of powers underpinning the new benefit. The detailed requirements will be set out in secondary legislation. I am committed to further consult on how we use these powers, and it is my intention to consult fully on the secondary legislation where the rules for Personal Independence Payment will be different to those currently applying to Disability Living Allowance. This consultation will build on the earlier one.

As the previous consultation took no account whatever of the opinions of sick and disabled respondents, we have no reason to believe that future ones will be any more transparent. We remain very concerned that legislations will be passed without these "detailed requirements" and call for a pause to PIP until it is clear exactly how it will affects us.

Responsible Reform further suggests that we did not take into account

considered in the Government's analysis and have been used to inform the design of the new benefit and supporting processes.

The Government received 5,500 responses to the consultation. Of these :

500 were from groups representing millions of sick and disabled people throughout the UK.
2,500 were template letters. We reject the idea that people sent template letters to the Government just to congratulate them and argue that these will almost certainly show some concern over the proposals in 100% of cases.
Given the overwhelming opposition to the plans for PIP expressed by the 523 groups who responded (national charities, local authorities, local charities and disabled people's organisations) representing millions of disabled members, it would be remarkable if the 2,500 individual responses were entirely in support. However, we have put in a further FOI request for all 5,000 of the remaining responses - information that we would anyway, expect Lord Freud to make public in support of Lord Freud's claim that "All consultation responses, over 5,000 individual submissions, have been thoroughly and appropriately considered in the Government's analysis and have been used to inform the design of the new benefit and supporting processes."

ssessment process for the new benefit with an independent group of

specialists in health, social care and disability, as well as some disabled people.

"Meeting" does not confirm co-operation or engagement. In our experience, disabled people and their organisations are increasingly frustrated that their opinions are ignored. In particular, whilst some form of assessment is supported, we can find no support at all for the ESA-style assessment proposed by the Government.

This has not been a passive relationship. The comments, input, advice and guidance has led to changes to both the assessment criteria and the overall policy, most notably that we will not remove the mobility component of both DLA and Personal Independence Payment in residential care homes.

An enormous coalition of disabled people their organisations and major charities are saying that they DO feel this has been a passive process. There are many, many elements of the welfare reform bill that we are all warning will cause real hardship. Removing the mobility component of DLA from those in residential care homes is just one proposal that would have been unworkable and discriminatory. There are many more and the Government have refused to consider alternative proposals. The assessment criteria remain a cause for deep concern across the disabled community and are still far from workable.

The Department has also established the Personal Independence Payment

design and develop delivery arrangements. The Department has also adopted the principles of user-centred design for Personal Independence Payment that places customers at the heart of the design process to ensure their needs are reflected in the way policies are delivered.

This response does not address any of the serious concerns raised by the Responsible Reform report. (Spartacus Report) That this letter fails to comment on the use of misleading statistics to justify reform, fails to comment on the repeated warnings that proposals for PIP may breach international and UK equality laws, and fails to understand what is leading to the growth in DLA caseloads is of great concern. They still do not explain where or how they decided to cut 20% from the DLA budget or look at the impact that this will have on disabled people.

It is what Lord Freud does NOT address in this letter that we believe ought to give peers the greatest cause for concern.

My Ministerial colleagues and I are personally committed to making Personal Independence Payment an effective, efficient benefit that targets support where it can help those facing the largest challenges in leading an independent life. It is in everybody's interest to make sure that disabled people and their representatives are involved as we design a solution that achieves those goals. I believe my Department has and is taking the right approach to achieve that, and we will continue that open dialogue as we during the implementation period and beyond.

[signed]

"Lord Freud"

Minister for Welfare Reform

Response on behalf of the Responsible Reform report by Sue Marsh and Kaliya Franklin

Spartacus Stories

2012-01-16T10:00:00.000Z

This week, the focus in the Lords will shift to Disability Living Allowance (DLA) and Government plans to scrap it entirely and replace it with Personal Independence Payments (PIP).

It is this proposal that prompted us to produce the Spartacus Report or Responsible Reform.

Sick and disabled people, their charities and organisations do not support the plans, which are based on an ignorance of disability, flawed evidence and will do great harm to millions. The Government are steamrollering the changes through despite growing calls for PIP to be put on hold until the plans can be made safe.

We do not oppose reform of DLA - sick and disabled people want the benefit to be simpler and better targeted. We DO oppose plans that will fail causing millions to suffer. We call on the House of Lords to attend the debates tomorrow and vote for a pause.

This morning, we see desperate attempts at propaganda from the DWP. Once more, we must ignore it, however painful it is. We must ignore the fear that these attacks inspire and make our own case honestly, calmly and clearly. Once more, we must present the British public with evidence and trust that they will not accept this attack on the most vulnerable of all.

All day, we will be posting stories here http://spartacus-stories.blogspot.com/

They will tell people what DLA is really used for and how it helps us to live as independently as we are able to. All over the internet, people will tell their side of the story and the blog will be updated all day. Please use the hashtag #spartacusstories to tell your own story on twitter or to post links to your own experiences.

Update your statuses on Facebook, calling for a pause to PIP and asking peers to attend the debate tomorrow. Blog, send the links to your local paper, ask friends and family to join in.

We must report our own news, we must be our own advocates.

It is becoming clearer every hour that the Government have no understanding of their own policies. Their arguments are unravelling by the day and no amount of lies or spin will hide us away.

If the best argument the Government can make is "we can't afford it" or "you don't deserve it" then we must just trust the public - and the Lords - to decide for themselves who to listen to. We must hope that they ask who they believe - corrupt, out of touch, ignorant, politicians or the very people they hope to silence and ignore.

I am confident they will hear our stories and reject the arguments of MPs who receive more in food expenses than we must live on for a month.

#spartacusstories is our chance to be heard.

Conservative Manifesto 2010 - Disability & Care

2012-01-15T18:03:00.000Z

Jobs and Welfare

"The Government believes that we need to encourage responsibility and fairness in the welfare system. That means providing help for those who cannot work, training and targeted support for those looking for work, but sanctions for those who turn down reasonable offers of work or training.

We will end all existing welfare to work programmes and create a single welfare to work programme to help all unemployed people get back into work.
We will ensure that Jobseeker's Allowance claimants facing the most significant barriers to work are referred to the new welfare to work programme immediately.
We will ensure that receipt of benefits for those able to work is conditional on their willingness to work.
We support the National Minimum Wage because of the protection it gives low income workers and the incentives to work it provides.
We will re-assess all current claimants of Incapacity Benefit for their readiness to work.
We will support would-be entrepreneurs through a new programme - Work for Yourself - which will give the unemployed access to business mentors and start-up loans.
We will develop local Work Clubs - places where unemployed people can gather to exchange skills, find opportunities, make contacts and provide mutual support.
We will investigate how to simplify the benefit system in order to improve incentives to work.

Social Care and Disability

The Government believes that people needing care deserve to be treated with dignity and respect. We understand the urgency of reforming the system of social care to provide much more control to individuals and their carers, and to ease the cost burden that they and their families face.

We will establish a commission on long-term care, to report within a year. The commission will consider a range of ideas, including both a voluntary insurance scheme to protect the assets of those who go into residential care, and a partnership scheme as proposed by Derek Wanless.
We will break down barriers between health and social care funding to incentivise preventative action.
We will extend the greater roll-out of personal budgets to give people and their carers more control and purchasing power.
We will reform Access to Work, so disabled people can apply for jobs with funding already secured for any adaptations and equipment they will need."

Quite apart from the appalling betrayal of carers highlighted in this afterthought of a manifesto entry, does anyone notice anything? Anything huge they forgot to mention?

Oh yes, silly them. Not a peep about scrapping DLA and replacing it with PIP. Well, except this of course :

“Conservatives have pledged to preserve Disability Living Allowance and Attendance Allowance as cash benefits.”

Makes it sound like there's nothing to worry about doesn't it?

The Start of MY Campaigning - Nowhere to turn for the Vulnerable

2012-01-15T14:07:00.001Z

I have to accept that the majority of people still support cuts to public spending.http://ukpollingreport.co.uk/blog/archives/2945

I think that in a fuzzy, undefined way, most of them think the cuts will mainly come from dole scroungers, healthy cheats "on the sick", cutting extortionately high housing benefit enabling massive immigrant families to live in mansions in Mayfair and mopping up the rest, the catch all conscience salve of "efficiency savings."

We're talking about at least £83 Billions of cuts. I'm sure most of us don't have a clue about how much money £83 Billions actually is - well it's eye watering. If you believe a single word I write, then believe me, it's not coming from "efficiency savings" and a few scroungers. Remember, tax rises on top of this £83 Billions (mainly VAT) will only account for around £20 Billions. (Only!)

Of course, I am most passionate about cuts to disability and sickness benefits. So often, this group can't answer back, (literally) can't physically march endlessly up and down Whitehall, and they don't have the financial alternatives to benefits that healthy people do. I know it's easy to turn a blind eye, (no pun intended) or believe the oh-so-smooth Mr Cameron when he assures you that the "poorest and most vulnerable" will be protected, but it's just not true, and my Conservative, Lib Dem and Labour friends are united in their belief that this section of society are being scapegoated, let down and abandoned in a way that is truly sickening.

This post won't be short and snappy. It might be a little detailed and specialist, but if you read it all, you'll find a litany of cuts that will make the world an impossible place for many of the most physically and mentally disabled in our society. I don't want to live in this cruel place and whatever your political persuasion, I think you'll agree. Get a cup of tea, find a quiet half hour, and please, please read this.

Sarah and Keith are in their forties. They have two children, Oliver and Ruby. Oliver is 11 and Ruby is 9. Sarah used to be a Paralegal, but she developed MS 6 years ago. Keith was a Fireman. Oliver was born with severe physical and learning disabilities and is largely dependent for his care needs.

Keith had to first come to terms with his son's profound disability. Then he was dealt the double blow of finding that his wife too, had a progressive, degenerative illness that would shorten her life and slowly take her away from him. He faced a choice : Give up work and look after his family, or see his son and eventually his wife, go into care.

He gave up work and the family became completely dependent on the state for their housing needs, income to buy food and pay bills, care needs for Sarah and Oliver, and transport costs. Nonetheless, Keith undoubtedly saves the state thousands of pounds every month. The cost of pemanent residential care for Oliver would be massive and it will not be long before Sarah would also need full time, residential care. Keith does all of this, largely alone, with just the occasional support of a local hospice for Oliver, that provides a few hours respite care once a week. Oliver does go to a special school and with his modified transport provided through DLA, Keith's dream, is that, with state assistance and Keith's ever constant support, one day, he will be able to live independently, and manage some kind of fulfilling work.

After a year or so, when their lives had somehow settled into the new, (previously unimaginable) routine, Sarah found that claiming Disability Living Allowance (DLA) meant that she could in fact, still work part time as a paralegal. The higher rate mobility allowed her to pay for transport to and from her office and her small firm of lawyers applied for an "Access to Work" grant which meant that they could install a ramp and a special desk to enable Sarah to actually enter the building to do her job.

Today however, Sarah has become too ill to work. Her speech is slurred, she needs help feeding herself, dressing, and she uses a special chair to allow her some mobility. Now that she can no longer work, she has to claim the ridiculously entitled Employment Support Allowance (ESA).

Ruby is a young carer too. Unpaid and unrecognised, she reads to her Mum and brother, makes them meals and drinks and takes on many other small tasks to help her Dad.

Keith suffers from intermittent depression when the stark reality of his situation becomes too much to bear. However, he has no choice but to carry on, daily trudging through the enormously repetitive and physically demanding job of caring for two severely disabled loved-ones. There are regular hospital stays to deal with, Consultant's appointments, costly prescription charges for Sarah, 40 page plus forms to fill in for every bit of help - for DLA for ESA, for modifications to their home (though Keith does as many as he can himself if he can every find an hour or so).

Sarah has to be "assessed" every few years to keep her financial support. Incredibly, the private American firm ATOS, used to "assess" ESA claimants, placed Sarah in the Work Capability Assessment Group, meaning that she was considered by their non-medically trained assessors to be capable of doing some kind of work. (Only 6% of claimants are now being found entitled to long term support under ATOS's assessments. ( http://diaryofabenefitscrounger.blogspot.com/2010/11/compass-report-into-esa-assessments.html)

Oliver is regularly rushed to hospital by ambulance, his life in the balance, but so far, the incredible local children's ward have saved both his life and his fiercely nurtured dignity.

Since May, the family have first been concerned, then astounded, then terrified and now desperate as they've heard the endless drip-drip of announcements from the new coalition government.

The Access to Work programme has been cut, meaning that if Sarah was still at the law firm, they would never have been able to afford the ramp and desk that meant she could work for those extra few years. http://www.labourlist.org/some-cuts-dont-make-the-headlines

Their benefits are to be capped at £26,000, with only Sarah and Oliver's DLA payments excluded. They will almost certainly have to move, as from now on, their home needs will be assessed on the cheapest 30% of available housing. A local charity had raised thousands to install a special "Sensory room" for Oliver with lights and shapes and colours that help to stimulate his educational development. They will probably have to leave it all behind as the new home will need to be smaller.

Oliver's special school provision is to be axed, http://www.ft.com/cms/s/0/2a6f0496-f996-11df-9e29-00144feab49a.html#axzz1AjCGUdhq despite promises that it would be protected. The nearest school he could go to now is over 20 miles away, leaving his education in grave doubt.

Sarah was due to appeal the decision made by ATOS that she was capable of work, (40% of assessments were going to appeal with evidence from CAB that around 70% of appeals were being upheld with representation http://www.cas.org.uk/news/2010/may/call-to-end-misery-and-hardship-for-sick-and-disabled ) but legal aid has been slashed and she will no longer qualify. The government are also talking about limiting the right to certain tribunals anyway, so it's unlikely Keith can even represent her himself..

Oliver will never have the option to live independently now, as the Independent Living Fund is to be scrapped. http://www.scope.org.uk/news/independent-living-fund-comment This would have topped up his care by, perhaps £300 or £400 a month, meaning that with Keith's help, he could have lived in accommodation with only limited assistance. Going into permanent residential care would cost the state many times more and another cut announced, is that Oliver would no longer be entitled to mobility assistance in residential care. http://www.touchstoneblog.org.uk/2010/10/dla-and-residential-homes-a-nastier-cut-than-you-may-think/ He would lose the tiny bit of independence this afforded him and be stuck staring at four walls, unable to get out. Anyway, Keith can't bear it, so will probably just carry on caring for him at home until he's too old or frail himself.

The next time Oliver needs to stay in hospital, the family will lose his DLA. All the extra costs of car parking, extra care for Sarah while Keith is at the hospital with their son, accommodation for overnight stays, will now have to be found from somewhere. The last time he was admitted, there were only 4 trained nurses for every 28 patients instead of the usual 8. The hospital is even talking about closing the ward altogether because of the "efficiency savings" they are expected to make, (which are actually stealth cuts). This means Oliver will have to go to the larger hospital 34 miles away, where he knows no-one and Keith will incur even more costs visiting and transporting him.

In fact, even DLA is to be abolished, replaced with Personal Independence Payments.http://disabledpeopleprotest.wordpress.com/2010/12/06/dla-to-be-replaced-by-pip-from-201314/ First the government said they would need to cut around 20% of claimants altogether, recently the figure of 25% was suggested. As Sarah is only in the Work Capability group, it's unbelievable, but likely that she could be one of the 25%. They live in fear. If Sarah loses her DLA, they will lose Keith's Carers and Attendance allowance too.

Because local government faces cuts of over 7%, the council have cut £200,000 of funding to Oliver's hospice that Keith so relies on for a few hours respite. They have no choice but to close now, leaving the most disabled local children without this incredible resource that helps to develop them into adults who can play some role in society.

Keith and Sarah have looked at Keith returning to work, but it would mean most of their benefits would be cut, Oliver would have to go into care, and Sarah would simply have to wait for Keith to be off shift to get any care herself. Besides, Fire fighters are being cut too, so it's unlikely there would be work for him anyway.http://www.nhsonline.net/news/article.asp?CategoryId=37&ArticleId=4631

George Osborne announced in his Comprehensive Spending Review that for those on ESA in the Work Capability Group who have working partners, the benefit is now to be time limited to one year. (retrospectively) http://www.disabilityalliance.org/esacut.htm This means that Sarah would no longer have any personal income at all, despite contributing tax and NI for years as a paralegal. Ironically, this particular cut makes it impossible for Keith ever to return to work again.

The family is under so much stress, that Ruby is frightened to go to school, in case her home has been taken away when she gets back. Sarah has considered committing suicide to ease Keith's burden and Keith cries himself to sleep when he thinks no-one can hear him.

It is entirely possible they might end up destitute or even homeless.

Will you help? Will you stop this? Is it really credible that families like Keith, Sarah, Ruby and Oliver carry the burden of our financial woes while RBS give Hester a 2.5 million bonus?

Share, Retweet, Link, Write to Your MP, sign the petitions, join a Disability anti-cuts group, tell your friends, write a blog post or an article for your newspaper.

The dearly fought principles of equality and human rights for all, basic rights to dignity and a life as fulfilling as it is possible to live are being ripped away. The logical conslusion of these cuts are unthinkable. Please, please, don't let them happen.

** The family above are an example of real life stories. Names have been changed.

Shame on you Prime Minister - Where the Campaign Began

2012-01-15T11:30:00.001Z

This video was first recorded by Kaliya Franklin after the Comprehensive Spending Review, October 2010.

#SpartacusReport inspires a sermon

2012-01-15T10:38:00.000Z

With huge thanks to Rabbi Debbie Young-Somers of the West London Synagogue of British Jews in Central London for allowing us to reproduce yesterday's sermon in full. And Mazel tov to Maya!

Hearing the voice of Moses

Maya mentioned in her dvar torah that she has special needs –though I would argue her sense of an inability to sing is only a disability if Maya believes it is! It’s often said that we in fact all have special needs of one sort or another, we are just affected by them in different ways. Our limitations are often placed on us by the world we live in, but it is not uncommon for us to place limitations on ourselves, through our own fear and doubt. Moses demonstrates this perfectly in this weeks Torah portion, trying to convince God (not just his parents or a teacher) that he really can’t do the task he has been called to. He has a speech impediment, which midrash tells us was caused when Moses had placed hot coals in his mouth as a child[1]. But we can learn a huge amount from Shemot about supporting those who may need more support to achieve their full potential than others. If we are all given the right encouragement and guidelines, and perhaps more importantly resources, just as Moses is by God, we can overcome much that life has thrown at us.

And of course it isn’t just this week’s portion which tells us of the Jewish imperative to support the vulnerable in our society, there’s the obvious quote from Leviticus: “You shall not insult the deaf or place a stumbling block before the blind” (19:14). But there are other imperatives too; one of my favourites comes from Isaiah (56:5) talking about the Temple: “For my house shall be a house of prayer for allpeople”. We need to not just enable, but ensure our houses of worship, and the world around us, is open to all, not just those we see.

In starting to think about these issues I sent a twitter message on Thursday to a tweeter known as @BendyGirl who I follow and have learnt a huge amount from. She suffers from a condition called Ehlers Danlos Syndrome and blogs, in her words “about the highs & lows of life lived with joints that dislocate as frequently as the British weather changes”. To leave the house she needs an electric wheelchair, however to qualify for one on the NHS you have to be wheelchair bound in your own home for 6 months. At home it is good for her health to move as much as possible, so in walking at home, she is precluding her opportunity to leave the house. She was incredibly helpful and suggested in response to my unsolicited online message that I just give her a call. Which I did.

It is clear that our responsibility, Jewish or otherwise, to support the vulnerable in our society is not going well. You might even be surprised to know that members of our own congregation are struggling through the benefits system, and despite already living hand to mouth, are facing cuts in Disability Living Allowance and Employment and support allowance. Proving you need the benefits is becoming harder and harder, with those who are wheelchair bound, likely in the new benefits which will replace the DLA to be qualified as able to work as well as you or me, as long as they can propel the chair themselves.

We all know cuts and savings need to be found, and it’s important to note this is not a coalition problem, these cuts began to be made under the previous government. But I was struck by something BendyGirl (whose real name is Kaliya) made. In Nazi Germany, well before there were Jewish pogroms and camps, disabled and mentally ill German citizens were rounded up, and it was for them that camps were initially developed. And how were the rest of the population convinced this was ok? They were told that these people were an economic drain on the nation. Increasingly, as Kaliya sees it, our media has been spearheading a campaign to convince us that the disabled are work shy benefit cheats. In the last 18 months campaigners have noticed a significant increase in hate crimes towards the disabled, and they are no longer referred to as ‘spaz’ when attacked, but as ‘benefit scrounging scum’. In fact, only half a percent of all disability claimants have been found to be fraudulent, and yet to combat these false claims, benefits are being cut by, at the most optimistic estimate, 20%. Deuteronomy (15:7) says “If there be among you a needy person, you shall not harden your heart, but you shall surely open your hand”. We need to start hearing not only the encouragement of Deuteronomy, and indeed of today’s portion, but the voice of those like Kaliya, who feel invisible (especially if they don’t have a wheelchair or white stick) and incredibly vulnerable.

Disability campaigners are, on the whole, themselves physically struggling, sick, and isolated. Moses’ inability to express himself clearly is a useful metaphor for this, he had his brother, Aaron, to help him along the way, and he became the greatest leader of the Israelites. With this kind of support, three defeats against the welfare reform bill were achieved this week in the house of Lords (cavod to my senior colleague in the corner). Yet these cuts have been happening for a while, and will continue if more isn’t said and done.

Maya, I know you are an incredible ally and support to your mum, and many in the community are carers and supporters just like you. I have seen and worked with some of you here as you struggled with eviction because benefits couldn’t be processed when they were needed. As a community we have felt the cuts in social care and allowances biting, and have this month been joined in our professional team by a Social Care worker – Jo, who is helping us deal with the sheer volume of work that is coming our way now that social services are not doing their bit, or at least helping us to navigate the incredibly time consuming beurocracy. What I hear from Kaliya, and from many other voices, particularly on the web, where the housebound often have their only outlet, is that people aren’t making enough noise about this. As part of her condition, Kaliya’s larynx had collapsed when we spoke, making the parallel between her and Moses even more stark – she, and so many others, need our voices, so that they can cling onto the meagre benefits they have now. We need to support those that we can, and be the voice for those who can’t raise theirs up loud enough. Even if this doesn’t affect you directly, it is still our responsibility to speak up for others.

And as a community we are also being given the chance to come together to work to change how accessible we are through the Judith Trusts Inclusion Campaign which is working with us to ensure we can reach out and include, and I hope more of you will want to become involved in this training as well.

Mishnah Sanhedrin (4:5) says that humans make coins, all from the same mould, and they all come out the same. God, however, makes humans each from the same mould as the first human, yet each of us is unique. We all have unique skills and abilities, as well as challenges and disabilities. Maya, you confessed to us what you struggle with, but you also demonstrated what you are fantastic at. Everyone wants to contribute, but not everyone can do so in the same way or to the same extent. I hope we can all learn from you about how to be a support and a friend. I must confess, as a sister of someone with special needs, I’m angry at what is potentially being lost both in care and in human dignity, but as a Jew, and as a British citizen, who knows we can do better, I am angrier, and I want us all to lift up our voices, in remembrance of Moses who couldn’t.

Cain Yehi Ratzon

May this be God’s will

Venomar Amen.

No Data Protection for Sick and Disabled

2012-01-15T08:24:00.002Z

A few months ago - again, thanks to FOI requests - we found that the forms we must fill in to apply for ESA (Employment and Support Allowance or "sickness benefit") were not all opened by Atos, the private company in charge of "assessing" our ability to work. Instead, they were being opened in a Royal Mail sorting office and sent on.

These forms contain the most sensitive information imaginable. They are nearly 50 pages long and you must describe every last detail of how your illness or disability affects your life. Often, one shares details that even a partner might not know. Mental health problems with a root in horrific trauma must be explained in black and white. Volume and frequency of incontinence must be listed and every last small failure of independence must be recorded. To learn that this information was seen by anyone but an assessor sent a shock through our community.

The DWP later admitted that "at least 5" assessment centres did not open their own mail.

The Spartacus Report made a nice publicity splash, but very few of the very serious claims it makes have been reported or investigated.

For me, one of the most shocking findings was that the DWP are already using the results of an ESA assessment to reject claims for DLA.

ESA is an out of work benefit paid to those with illnesses or disabilities who cannot work. It is a very modest form of income replacement. DLA, or Disability Living Allowance is a working benefit paid to cover the extra cost of disability - heating, transport aids etc. The two are entirely different and perform entirely different roles. What's more, those entitled to both ESA & DLA tend to be the most profoundly disabled.

As we were researching the Spartacus Report we found proof that the DWP are already using the decision from an ESA assessment to reject a claim for DLA. This:

-Despite overwhelming opposition to an ESA style assessment for DLA
-Despite legislation for DLA reform not yet passed in law
-Despite the clear data protection implications.

I've been ill for 28 years. I've spent more time with my surgeon than Katie Price. I've spent months as an in-patient yet I am not even allowed to read my own notes!!!

So fiercely is my medical data protected within the NHS, that I must apply in writing, sending £10 to cover copying costs. I may not even sit on my own in-patient bed and ask to see them. This is true of GPs opinions for benefit claims, for employer requests and for insurance claims.

Yet, if you are the lowest of the low in the eyes of those who design policy, if you are so apparently incapable or poor or useless that you must throw yourself on the mercy of the state - a "claimant" or worse, part of the benefit "stock" as Lord Freud likes to call us - it seems you deserve no such protection.

In the name of proving your worth, you must be prepared for your most intimate personal details to be passed around like a hookah pipe. What's more, you get no say in this and no one feels they have any obligation to inform you.

Now, if ESA assessments worked, this would be, at least, slightly less shocking. But they don't. 40% of rejected claims go to appeal and up to 70% of them are successful. The assessments cannot deal with fluctuating conditions and have been found unfit for purpose by the CAB, the government's own advisory committee, the DWP Work and Pensions Committee and every other independent report conducted. Even the professor who helped to design ESA says it is a chaotic mess.

These assessments are the single biggest issue that disabled people have with ESA. They are designed to exclude many genuine claimants, some people are dying just hours after being found "fit for work" the assessment centres are often inaccessible to wheelchairs (yes, really) and the entire process is farcical. To use this disaster to decide yet another vital support that sick and disabled people rely on is absolutely unforgivable.

We call on the Government to maker an urgent statement on this issue. We ask them how our rights under the data protection act are affected by this sharing of information without our consent or knowledge and whether they are able to lawfully take this step before the welfare reform bill is passed?

We ask them if we deserve any respect at all?

Not Scroungers Any More

2012-01-14T22:15:00.002Z

What a week! What could I possibly write in a blog post? I have 500 stories to tell you at some point and I doubt you would believe half of them. My favourite quote from the week was from Sonia Poulton in the Mail who claims we had 3 MILLION tweets for the Spartacus Report in the first DAY!!

Today, I finally got the chance to sit down and catch up. I discovered we have a @SpartacusTweets account I didn't even know about. And a Facebook page. And a forum. I found "battalions" of spartaci all over the web planning their own campaigns and creating brilliant, innovative ways to be heard. I read beautiful blogs about our campaign written by people I didn't even know. I saw support from celebrities, politicians, journalists, unions, charities, DPOs and disabled people everywhere I looked. I found coverage and supporters in America, Canada, Finland, France and New Zealand.

But do you know what I didn't find? In a week where we finally got coverage in The Daily Mail, the Telegraph and Newsnight?

I didn't find a scrounger.

That was the great triumph of this week. Finally, after all the months and months of patient reminders, people thought about disability. They questioned the wisdom of sending terminally ill people to the jobcentre. They rejected the idea that illness or disability magically disappear in a year. They were amazed to find cancer patients were expected to look for work on chemo and that disabled children were to become chattels dependent on goodwill, no longer entitled to independent means.

We always knew they would. We always knew that if anyone cared to tell them, the public would be horrified.

When the DWP came out fighting with a raft of scrounger stories, everyone just ignored them and carried on talking about disability.

Lord Freud has had months to present evidence to the Lords. He has teams to brief them and money to pay for research and reports. He had goodwill on his side - the Lords don't seek to destroy bills, far from it. He had the might of the DWP and the ONS and the OBR to write his "evidence"

We had : A few thousand determined sick and disabled people, 4k, the internet and Hansard.

In the Lords, crossbenchers are not political. Unlike the Commons, there is a rump of independent thought. It happens that they are packed with disability experts too. They heard Lord Freud's evidence, and we made sure they heard ours.

Just one crossbencher voted with the government over time-limiting disability and sending cancer patients out to work. Just one.

All of the others - all of them - saw that we needed them.

We had no idea they had heard us and their overwhelming endorsement of our arguments was like a burst of hope. They can never know how grateful we are.

They reminded the country that we are disabled. Or unwell. Or both. They reminded us that any one of us could need help one day.

And once and for all they blew a lie-sized hole in the Government's scrounger rhetoric.

Guardian looking for DLA Case Studies

2012-01-13T22:01:00.002Z

The Guardian want to hear about how your DLA helps you. Full details are here. Please share this everywhere and lets get them a good selection of stories to choose from.

Cross posted from http://samedifference1.com/2012/01/13/the-guardian-are-looking-for-your-dla-stories/

OUR RESPONSE TO GOVERNMENT TODAY

2012-01-12T09:06:00.001Z

Yesterday, Lords voted to overturn the one-year time limit to contributory Employment and Support Allowance proposed by the government. They were defeated by a staggering 224 votes to 186. We had lobbied on this issue more than any other. Yesterday, we posted a full briefing on why. You can read it here :

http://diaryofabenefitscrounger.blogspot.com/2012/01/impact-of-time-limiting-esa.html

When we started campaigning, we had four very, very clear objectives. There are other things that urgently need to be changed in the Lords, and we thank them for their forensic attention to detail that means these other issues are not being ignored.

Today, the DWP and the very highest ministers in government will be everywhere trying to mitigate the damage of yesterday's defeat. You will hear their misrepresentation of us on every TV show, in every paper. You will cringe at every inaccuracy, burn at every line of spin.

Mostly, I know that you will burn at the injustice of not being heard. You will wonder - as we have always wondered - why the mainstream media persist in ignoring truth and reason and evidence. Journalists will not be queueing to ask how the defeat came about, to ask the campaigners who almost certainly made it happen.

You might burn too, when you hear Labour claim this as their victory.

None of that matters. The public were never ours to lose. We have come this far without them, by making reasonable, calm, evidence based arguments to the people who really matter, the people with all the power. We have come to this point by engaging with politicians of all colours, by owning social media and using it to make our own news.

Today, you have truth and justice on your side. The Government do not. No Government is defeated on the scale we saw last night, with the very strong majorities we saw, by accident. It was the undeniable injustice of the Government's plans that convinced the Lords.

Do what we do best and make our case honestly. Re-post articles, write short statements, blog, contact friendly journalists and see if they will drop a little of the DWP spin angles. Contact supporters and let them know we won and what it means. Own the internet. It's all we have.

Perhaps a short note to some of the peers you lobbied thanking them? We have been insistent and a thank you is always nice.

Trust in our case, trust in the evidence we have presented, but most of all trust yourselves. Governments are not defeated often in the way ours was yesterday and you did it. Without the TV news, without much of the printed news, without an opposition, whatever Labour MPs claim today. The Labour Lords worked tirelessly for us however and they deserve a huge thank you.

The following briefing is one we posted months ago, that outlines our key concerns with the welfare reform bill and the measures affecting sick and disabled people today. Feel free to use it, share it in any way you like.

The Government - and media - might like to notice that we have already won the first one, The Spartacus Report directly addresses the 2nd one, and last night's vote casts huge doubt on the third.

We are not an aimless campaign group with no real goals, we are not unreasonable or aggressive.

We are the sick and disabled of the UK. We are Spartacus.

Briefing of our 4 main objectives :

Whilst some of the bill might be helpful, I want to be very clear today about which parts sick and disabled campaigners feel are unacceptable :

1) Removing Disability Living Allowance mobility payments from adults in residential care.
An adult who needs to live in residential care will have extensive needs and are often amongst the most severely disabled. The mobility component of DLA afforded them their only freedom, allowing them to choose to fund a power wheelchair otherwise unavailable on the NHS, or to pay for taxis or transport to get out now and then. Taking this away would leave the most vulnerable disabled people effectively housebound. There is no support for this change anywhere - charities, independent benefit reports and even the government's own advisers have called for this to be removed from the bill

2) Scrapping DLA entirely and replacing it with Personal Independent Payments (PIPs).
DLA is a very effective benefit with fraud rates of less than 1% (DWP own figures) It is already incredibly hard to claim and the qualification criteria are very narrow. The government have announced that DLA claimants will also soon face assessment and that the overall number of claimants will be reduced by at least 20%. The government's own advisory committee concluded that they could find no justification for this reform and have asked for clarification from the government.
If a benefit is already very efficient, yet a government announce a 20% cull before a single assessment has even taken place, we conclude it can only be a cost cutting measure that will ignore genuine need.

3) Time limiting contributory Employment Support Allowance (cESA, previously Incapacity Benefit) to 1 Year
Many people who need to claim ESA have "long term variable" or chronic illnesses such as MS, Parkinson's, Bowel Disease, Leukaemia or severe Mental Illness. These conditions often do not go away after a year and sadly, often get worse over time. A high percentage of those with these conditions are being found "capable of limited work" under ESA, and not qualifying for unconditional support (known as the Support group who are not affected by the time limit) but after 1 year, if they have a working partner, they will receive no ESA whatsoever. All of their benefit will simply be stopped, a loss of just under £5000 a year.

4) ATOS assessments are "unfit for purpose" and a better way of assessing need must be implemented. ATOS are the private company charged with assessing over 1.5 million sick and disabled people during this parliament.
-The assessments are not necessarily carried out by a doctor.
-40% of rejected claims are going to appeal with up to 70% of those decisions being overturned.
-Assessments are humiliating and degrading causing great anxiety to those genuinely in need.
-Just 7% of claimants are being found unfit to work.
-Testimony from Consultants and GPs is often ignored entirely.
-People are dying before lengthy appeals can be heard.
-Even the professor who designed these assessments calls them a "complete mess"
-The descriptors exclude many serious, long term conditions or disabilities. This means that many serious conditions are simply unlikely to qualify.

There are other problems with the bill - capping housing benefit; re-classifying "mobility" so that those who use their wheelchairs too efficiently can be classed as "fully mobile"; removing an age related payment from ESA; scrapping the Independent Living Fund; cutting community care provision; cutting the Access to Work programme and many more - all of which will hurt sick and disabled people disproportionately, but the four points above MUST be addressed before the Welfare Reform Bill is passed.
They are causing or will cause real hardship.
They will not achieve savings as pressures will only be shifted to the NHS or social care provision.
They will increase homelessness, mental illness and poverty amongst this most vulnerable group of all
They will leave many in genuine need without support
They reduce the independence, standard of life and dignity of those we have a basic duty to protect.

Remember to tweet using #spartacusreport and when sharing links or emailing. Thanks, Sue My Facebook page is currently blocked, but you will find all the same articles at http://benefitscroungingscum.blogspot.com/ Please use this slink to post to Facebook

Please also sign Pat's Petition http://epetitions.direct.gov.uk/petitions/20968 calling for a pause to the reforms until they are safe.

From-Bed-Activism

2012-01-11T12:21:00.000Z

Can't type much, but something extraordinary happened just now on twitter.

Someone pointed out how they helped from their beds (we decided beds on sofas count) and suddenly, everyone is saying that even though they were bedridden at times, they still did what they could to help the #spartacusreport

Will you leave a comment below if you did this? Two of our #spartacusreport helpers are in hospital seriously ill, I escaped by a whisker and Kaliya might yet follow them. One of our most brilliant supporters has not answered us for three days. We're very worried.

I think perhaps we ought to start recording what this has cost people.

THE IMPACT OF TIME-LIMITING ESA

2012-01-11T07:14:00.001Z

Today, peers will vote on whether or not to time limit Employment and Support Allowance. This is a short, bullet pointed briefing.

Whatever else you do in you careers, the sick and disabled people of Britain beg you not to do this.

-700,000 people with serious illnesses and impairments will be affected by this policy, many losing any right to an independent income. http://www.dwp.gov.uk/docs/esa-time-limit-wr2011-ia.pdf

-The means test is set at just £7,500 per year, meaning that a partner must support an unwell or disabled loved one if they earn more than this.

-Families already overwhelmingly living in poverty will lose £4661 per year. This is three times as much as higher rate taxpayers will lose in child benefit.

-This policy only affects working families and savers as it only applies to those who have contributed NI or have savings over £6000.

-It is a disincentive to work and will only encourage families to break down http://www.dwp.gov.uk/docs/esa-time-limit-wr2011-ia.pdf

-It overwhelmingly affects the poorest most. The % impact falls from the highest in the 1st decile of earnings to the lowest in the 10th.

-It estimates that 60% will simply switch to income based ESA and not be affected. Those individuals with low or no other income may apply for income-related ESA. However, it is expected that only 60 per cent of people losing their contributory ESA will be compensated by income-related ESA, even partially.

- The report concludes that 90% of those placed into the Work Related Activity Group (WRAG) will be affected.

-ALL groups will lose income on average through this measure.

-It is based on an assumption that 50% of claims will be appealed!!! How are they able to go forward with a system this inaccurate?

-The government claims that 700,000 will be affected by the Time Limit - a figure previously hotly debated, ranging from 400,000 to 1 million. It is expected to cut benefits for those not fully fit for work by 1.2 billion per year.

- The government acknowledges, that this is a disincentive to work and may push couples into divorce or into giving up on work altogether. However, they admit that they have no idea how significant this will be.

-Even though they are still ill, those who do not qualify for income-related ESA will have to move onto the Work Programme.

-Almost half the contributory only ESA customers in the WRAG are aged 50 to 64, so the policy will impact on more people in this age group. As a result the average loss in household net income for those aged 50 or over is slightly higher than for other age groups - precisely the group that will find it difficult to get back into work due to their age. It is likely that a higher proportion of older recipients will not be eligible for income-related ESA and will see a loss in income.

-Sick and disabled people with limited capability for work are conflated with jobseekers as ministers claim ESA must be brought into line with JSA.

-The government admit that 94% of those affected will not have found work by the end of the year. They also insist that it is irrelevant whether or not they have recovered. http://www.dwp.gov.uk/docs/esa-time-limit-wr2011-ia.pdf

-The government admit that there is only a possible indirect effect of increasing movement back into work for those affected, but state however, this effect is uncertain and has not been quantified.

-The only justification ministers have given for this policy is that "We can't afford it".

-People with serious, lifelong, and degenerative conditions will all be affected by this. People with MS, Cancer, Parkinsons, Bowel Disease, Kidney Failure, Heart Disease, Lung Disease, Schizophrenia, Bi-Polar and many, many more conditions will lose benefits, left in limbo until they are judged unable to do any kind of work at all. http://www.publications.parliament.uk/pa/cm201012/cmselect/cmworpen/1015/1015vw44.htm

-7,000 cancer patients will be affected by the one year time limit.

-However, people with heart disease, kidney failure, Parkinson’s, MS, Bowel disease, Schizophrenia, Bi-Polar, Cerebral Palsy, motor neurone disease and any other condition you could imagine may also lose all of their support after the year is up.

-While assessments are so flawed, a time limit will only compound an already desperate situation. 40% of rejected claims go to appeal and of those, up to 70% win with representation.

-The assessment system is so backlogged, that targets are already being missed, with many fewer people being assessed every week than intended. With the tribunal system also under so much strain due to the vast number of appeals and the work programmes warning that over 90% may miss targets for placing the sick and disabled in work, this is a system in crisis. A one year time limit may well be the final straw.

-Time Limiting will be retrospective. Those who have already been on contributory ESA for over a year, will find that their support stops in April.

-Despite this policy still being debated in the House of Lords. Ministers warned those who may be affected back in September by letter at a cost of £2.7 million.

-Possibly the most astonishing part is the claim that the Social Impacts did not need to be investigated, neither under the categories of Health and Well-being, Human Rights or the Justice System.

-The government admit that they did not consult with any external stakeholders prior to the Chancellor’s announcement in the House of Commons on 20 October 2010. They say it is only now that they have started to engage with both internal and external stakeholders. (Oct. 2011)

-Most people in receipt of contributory ESA for more than a year are likely to be covered by the Equality 2010 disability definition and so these reforms have considerable significance for disabled people - those who are unable to work due to their health condition or disability.

Chris Grayling has said that assessments used to determine whether or not someone is "fit for work" or not are "Not money driven". However, when asked if after one year these vulnerable sick or disabled people would have found work or even be fit for work he replied it…"is not about recovery times. It is not about a decision that 12 months is an appropriate time for recovery. These are people who have other means of financial support, so what we have sought to do in difficult times financially, and by taking tough decisions,...is hold the line on this difficult issue and do not accept the right hon. Gentleman’s amendments. We do not believe that financially we can do so.

Full transcript here : http://www.publications.parliament.uk/pa/cm201011/cmpublic/welfare/110503/am/110503s01.htm

IT IS ALL TOO EASY TO GET IMMERSED IN THE STATISTICS WITHOUT REALLY REALISING THE HUMAN COST OF THESE PROPOSALS.

HERE IS A REAL LIFE EXAMPLE OF THE IMPACT.

I worked for nine years. I have a degree and nearly killed myself trying to forge a career in the face of terrible illness. In the end I had no choice. Working was killing me. Friends and family pleaded, begged even, but it took me a long time to accept that I could no longer work. Giving up on my hopes and dreams was the single hardest thing I ever had to come to terms with.

We had our own house for years - a beautiful beamed fisherman's cottage by the sea - but we had to sell it before it was repossessed, as our income fell from £46,000 a year to 21k a year. The equity we did manage to save is eaten away a little every month as we have to make up the shortfall in our income. But we are trapped. I can't work. More accurately, no-one will employ me.

My husband Dave is my carer and has to support us financially whilst coping with the trauma my illness brings into our lives and the lives of our children. Partners like Dave, who are carers too, often need to take lower paying jobs to look after us, jobs where they can work 9 to 5 and get time off at very short notice. Their careers suffer too.

I've lost count of the times people have urged him to give up work too, begged him to stop stretching himself so thin. Dave has had two breakdowns trying to hold our family together, but for him, working is the most important thing he can do for us. It gives him pride and it stops us all from feeling like total and utter failures.

For my family (and DWP estimates show that another 700,000 families like mine will be affected) the impact of losing that £388.45 a month will be devastating. We already live below the official poverty line and can't pay our bills.

Soon we will have no savings left and taking away £4,661 a year from us will mean we lose everything. As I mentioned, it is three times more than higher rate tax payers will lose in child benefit yet this is a cut that will affect some of the poorest households in Britain.

My family would end up costing the state 5 times more in total than we do now (around 26,000 a year) just because it will force us to give up on the idea of work. We never wanted it to be that way. We wanted to remain a working family. We wanted to pay our way, but the assessments failed us and successive "policies" failed us and now the cuts will fail us. This one policy alone - time limiting ESA for working couples or families -will fail us so spectacularly that it will bankrupt us. We will become entirely dependent on the state for everything.

That's why our partners often keep working, despite it being 100 times harder than giving up. We don't want to become 100% dependent on the state.

Remember, this cut ONLY affects WORKING couples or families who have had the misfortune of someone becoming too ill to work. It is a disincentive to work that goes against everything the coalition says they want to achieve.

I urge you all to reconsider time limiting ESA.

Please send this briefing to Crossbench and Liberal Democrat Peers this morning. Here is an interactive map with contact details http://www.google.com/maps/ms?msid=204639635371731701782.0004ada20165bf2c184ef&msa=0&ll=54.610255,-2.680664&spn=9.999969,28.54248

SPARTACUS REPORT - EASY READ VERSION

2012-01-10T18:05:00.000Z

The wonderful people at United Response have pushed themselves flat out over Xmas to present our report - Responsible Reform - to parliament.

Here is the easy-read version. : http://www.unitedresponse.org.uk/2012/01/the-spartacus-report-the-easy-read-version/

SPARTACUS DAY 2 - URGENT UPDATE

2012-01-10T12:01:00.000Z

Please watch this video, thank you.

Link to full report, Responsible Reform http://www.ekklesia.co.uk/node/16008

Share using #spartacusreport

http://twibbon.com/join/spartacusreport Please wear the Spartacus twibbon

Spartacus Report - Day 2

2012-01-10T10:01:00.000Z

Yesterday was absolutely wonderful.

For the first time, we broke through and really found our voice. We trended No.1 on Twitter and kept trending at 2 throughout the day. The support from celebrities and journalists and other bloggers was humbling.

Today, we have a chance to really explain our issues, but despite our desperation and fear we MUST remember that our issues are new to most people. We must trust that the report has it's own strength.

It is backed by Disability Alliance, representing over 380 charities. Scope, Mind, RNIB, Sense, National Autistic Society, ME Action Papworth Trust and many, many more endorse our report and share its concerns.

Politicans are supporting us. Lords are supporting us. We must give them every chance to hear our evidence and act on it.

The report raises some very serious issues and it is those issues we must explain.

Today, we ask anyone who read and was shocked by the #spartacusreport to wear this twibbon http://twibbon.com/join/spartacusreport and stand with the sick and disabled people of the UK have fought so very hard for this one chance to be heard. We only have a few more days. Lords return tomorrow and the issues we have raised for so long will face votes. If we work together, no matter how exhausted we are, no matter how frightened, we can say we did all we could to make our arguments eloquently, reasonably and most importantly - based on evidence. Evidence that has been painfully lacking in this debate so far.

Can we show today that we are an electorate? That we can be seen, that we can be heard. Every twibbon is a "vote" for the #spartacusreport

If you are sick and disabled wear the twibbon.
If you realise that one day, at any moment, you too could face illness or disability and that our fight is your fight, please wear the twibbon.
If you are concerned at the lack of rigour and openness of our government, please where the twibbon
If you want us to be heard, wear the twibbon.

Keep tweeting, keep sharing and trust that if we work together, we can be heard. Sick and Disabled people can speak for themselves and for the first time, the #spartacusreport allows us to do that. Take this opportunity, take this platform and use it wisely.

I am Spartacus, and I will keep trying everything I can to protect our futures.

COMEDIANS SAY......

2012-01-09T17:04:00.001Z

Comedians support #spartacusreport

"With regard to the 'reform' of DLA: The government have at best ignored and at worst misrepresented the views of disabled people and in doing so return us to an era where the disabled had no voice and didn't matter. This is unjust, probably illegal and without doubt utterly vile."

Mark Thomas, comedian

sueperkins Sue Perkins

I support the #spartacusreport bit.ly/Ad01m6

"The definition of a civilised society is one that makes it a priority to support the most vulnerable. Any major changes which affect the lives of sick/disabled people should not be made without their support and advice. The main issue for these groups is that they have been continually overlooked and seldom respected. Now is not the time to overlook them. Now is the time to listen and act."

(Hardeep Singh Kohli, writer and broadcaster)

"As they currently stand, the proposed Personal Independence Payments are scandalous. No-one with an ounce of compassion can fail to be shocked by these changes. The idea that someone who can propel their own wheelchair should be judged as if they can walk is clearly ludicrous. The fact that someone's need for essential supervision isn't even considered is utterly inhumane. This government would do well to puts its ideology aside, and actually listen to the needs of sick and disabled people. This is how democracy works. This is how a civilised society acts."

Chris Coltrane, comedian, activist.

timminchin Tim Minchin

Bit of Monday activism. Read this: tinyurl.com/6s8c4hp Sign this:epetitions.direct.gov.uk/petitions/20968 #spartacusreport

"Disability Living Allowance is just as its name says. An allowance to help disabled people live their lives. By making cuts that will affect people on a day to day basis, you are unnecessarily making people's lives harder than they need to be or ever should be. Equality in society is something that should stretch across all areas and all people, it’s a simple human right. You remove that and we are no longer living in a democracy. If you really want to save money in this area why not ask the people that are directly affected by it where things can be approved and cost effective rather than making decisions that will, in the end, not help these people save any money, time or energy."

Tiernan Douleb, comedian

ACTORS SAY......

2012-01-09T16:29:00.000Z

"Disabled people have been fighting for years to establish our equality in society, these changes are tantamount to setting back the clock forty years where decisions about our independence were made by others. These changes will take away basic human rights from many disabled people. DLA enables disabled people to work, travel, engage in their local community, which in turn enables us to contribute more fully to society both financially and socially."

Cherylee Houston, actress, Izzy, Coronation Street

"As we were slowly inching closer to equality it is ridiculous and alarming that we are rapidly moving away from an inclusive society and back towards discrimination and segregation; the haves and the have – nots.

The impact of the proposed cuts will be hugely detrimental to most and to some utterly devastating. Please do not underestimate the damaging and harmful consequences of cutting very necessary benefits to very needy people.

Many people don’t seem to appreciate that living with a disability is incredibly expensive, benefits like DLA aren’t frittered away on extravagant luxuries, they are desperately needed to pay for basic travel expenses to work, PA support, respite for family carers, food and heating and having some semblance of a “normal” social life.

These benefits provide us with the ability to contribute to society; to remove them is to erase us from society and infringe our human rights.

It has been proven it isn’t financially prudent to reform DLA and it certainly isn’t ethical or moral to target the most vulnerable in our society; after all isn’t that what bullies do?"

Shannon Murray

"This thorough and rigorous report based on proper consultation with the people who will be, in many cases, shockingly affected by the government's proposed changes to DLA and the introduction of PIP, should be right at the heart of any welfare reform. The government's proposals are rash, short-sighted, inhumane and ultimately expensive. The new system is already causing much stress and anxiety to so many people who are frankly dealing with enough."

Julie Hesmondhalgh (Hayley, Coronation St) on #spartacusreport

JOHN PRESCOTT SAYS.....

2012-01-09T15:42:00.000Z

johnprescott John Prescott
“@allbigideas: #spartacusreport is TOP TREND ON TWITTER WE DID IT” < Well done everyone. Great cause

(then he tweeted again, but it's a bit rude, so you'll all have to just go and find it yourselves......)

AUTHORS VAL MCDERMID AND KATE LONG SAY......

2012-01-09T15:10:00.000Z

"How we treat our vulnerable citizens is a measure of a civilised society. The way to do that is not to make high-handed decisions on their behalf but to consult directly with them about their needs and how those needs can be met. It's surely not too much to ask of a government that constantly tells us we're all in this together."

Val McDermid, best selling crime writer

"We are not talking here about providing “luxuries”, or catering to a “lifestyle choice”. People with disabilities are simply asking for their essential needs to be met, a right most non-disabled folk take for granted. Frankly it appals me that this issue is even up for debate. What has happened to our society?"

Kate Long, author

STEPHEN FRY SAYS.....

2012-01-09T14:38:00.000Z

@StephenFry backs #spartacusreport

Looks as if the government's been found out lying and misleading the people on the subject of disability allowances:http://www.ekklesia.co.uk/node/16008
@stephenfry

CHRISTINE HAMILTON SAYS....

2012-01-09T14:21:00.003Z

"Most of us are lucky enough to take the basic functions of mind and body for granted, give or take the creaking of age. But, equally, many of us know someone who is not so fortunate, either within the family or as a friend, or even a friend of a friend.

To enable the most vulnerable people in our society to reach their full potential, we, as a community, must give them the support they need. Changes will always need to be made to adapt to different circumstances, but we must never lose sight of the fact that those who will be affected by any change (or their immediate carers) must be consulted at every stage"

Christine Hamilton

I am Spartacus and I.....

2012-01-09T14:01:00.000Z

Responsible Reform was a report put together by literally thousands. If you helped in ANY way, no matter how small, please leave a comment below starting

"I AM SPARTACUS AND I.........

You might have donated £5 to our fund, perhaps you always RTd our articles. Some will have stuffed envelopes, others wrote pieces. Scores of you researched, volunteers popped up from everywhere offering to do even the most obscure or mundane tasks for us.

Did you write to your MP? Email a peer? take part in one of our campaigns of send me a link to what may have ended up being vital research? Did you live tweet #teamwrb? Did you make a point of always sharing my links on Facebook?

So for tomorrow and next week when we have time to reflect, let's leave a record of exactly who made this happen and what they did

I hope we end up with hundreds of comments. xxxx

DOCTORS SAY......

2012-01-09T13:43:00.002Z

"The NHS Consultants’ Association believes that ill thought out reform to the DLA, with reduction of financial support to some of the most vulnerable members of society is not only unjustified, but also a false economy which will result in cost implications for carers and additional use of NHS services and resources."

Clive Peedell, on behalf of NHS Consultants’ Association

"It is important that in the quest to support employment in everyone, abled or disabled, that we do not underestimate the problems that many people with long term disabilities have in carrying out even simple day to day functions. Insensitive assessment of disability and failure to understand the complexity of their problems might inadvertently result in removal of their benefits, causing more problems in an already vulnerable population."

Clare Gerada, Chair of Royal College of GP's

BORIS SAYS.....

2012-01-09T13:29:00.001Z

"The government proposes imposing penalties if disabled people do not inform the government in changes in their circumstances. However, the Department of Work and Pensions statistics give the overall fraud rate for Disability Living Allowance as being less than 0.5%. For those with fluctuating conditions asking them to report every change to their condition would prove very stressful."

I Support the Spartacus Report

2012-01-09T10:01:00.003Z

So today, after months of work and planning we launch our Report

PRESS RELEASE

REPORT - RESPONSIBLE REFORM

We did everything possible to engage with politicians, lobbying MPs and Peers, writing articles, attending conferences, but at every turn we were brushed aside.

Despite serious concerns from campaigners, charities and disabled people themselves, the Government's the recent Impact Assessment (October 2011) into the proposed reform of Disability Living Allowance is almost identical to the original. Nothing has changed, almost none of our concerns have been addressed and as the House of Lords return to vote on the final stages of the welfare reform bill, we felt that it was vital we presented our own evidence.

This is the Spartacus Report. We all own it, we all created it. It is yours, use it in any way you wish. Please join in the campaign online today if you aren't already signed up:

Tweeting using the hashtag #spartacusreport "I support the #spartacus report"

Change Facebook status to "I support the Spartacus Report"

Email your MP with the links to the report and the press release using this short covering letter :

“This report into Disability Allowance Reform has been written, researched and funded by disabled people. As one of your constituents, I am very concerned by its findings and the misrepresentation of disabled people that it exposes.

Please will you read the report and support sick and disabled people in calling for a pause to Personal Independence Payments in light of this new research.

I look forward to your response,”

Finally, please keep checking the blog all day as we will be updating regularly with very exciting updates ;)

Our report shows that :

-The Government broke its own code of consultation over the DLA reform

-The Government has entirely misrepresented the views submitted as part of the consultation, giving a partial and biased view.

-The Government claim that DLA must be reformed as claims has risen 30% in 8 years - we find that these statistics are entirely misleading and give a "distorted view"

-There is overwhelming opposition to the new benefit, Personal Independence Payments

-Some elements of PIP appear to already be going ahead, despite a rejection of the plans and before legislation has passed.

-The Government are repeatedly warned that proposals for PIP may break International and UK equality and Human Rights legislation

This is our chance to be heard. This is our chance to put evidence in the public domain from our own perspective. Today, a courier will take 31 boxes or reports, all hand stuffed into envelopes and addressed and deliver them to every peer and every MP and all of the people who responded to the consultation.

We did it. I had no idea if we could when we started, but we did it.

From today, Government may of course continue to ignore us. But they can never say they didn't know what they were doing.

http://epetitions.direct.gov.uk/petitions/20968

Six days to get rid of the 12 month time limit to ESA

2012-01-08T17:21:00.000Z

I know we're all a tad busy ;)

But on 11th Jan, the other campaign we fought so very, very hard will see a vote in the Lords. Our brilliant supporter Caron over at Caron's Musings wrote this so that I could cross post it - knowing how busy I would be with the DLA campaign.

In all the excitement, do see if you can manage to do any of the things Caron put together for us. In particular, please contact Lib Dem peers and remind them how vital it is to us that they keep their promise and vote against time limiting ESA. If they cannot rebel, we beg them to abstain.

Next Wednesday, 11th January, the House of Lords will be debating the Welfare Reform Bill. It's expected that the controversial clause time limiting contributory Employment and Support Allowance to one year for those in the Work Related Activity Group, those people who are judged to have a limited capacity to work. This change does not affect the sickest and most disabled people in the Support Group.

At the moment, if you receive contributory ESA (based on your NI contributions), you get around £90 a week and are eligible for that until you reach State Pension age. Now, you will lose your entitlement to it after a year. So, if you work for 40 years and pay tax and NI for all that time, you will only, when you need it most, get a year's support if the Government plans become law. This will take effect in just 3 months' time.

That means that people who are too ill to work will effectively have to rely on their families to support them. Being ill is a pretty expensive business - if you need to have regular medical treatment there's transport costs affected with that. Also if your mobility is affected, you will need your house to be warmer. Not want. Need.

I think depriving sick people of the support they get from the State based on an arbitrary time limit is wrong. It flies in the face of everything I believe as a liberal in terms of looking at the person and what they need.

Most people, thankfully, do recover from illness within a year but some don't. It certainly took me two years after contracting Glandular Fever to feel remotely human again and it's left me with continuing health problems. Luckily I didn't need to claim ESA, but if I had, I am fairly sure I'd have had problems proving eligibility because of the fluctuating nature of the condition. If Sue Marsh, who suffers from really severe bowel disease, has trouble convincing the authorities that she's ill, then we have to suspect that the system is very flawed. Sue isn't my only example. Four years of working as an MP's caseworker provided me with many examples of the wrong decisions being taken and overturned after a lengthy and stressful appeals process.

The best argument I've heard against the time limit was put forward by Ken Reed, the new Chair of RNIB Scotland. He and I were speakers at a fringe meeting on welfare reform chaired by Secretary of State for Scotland Mike Moore at the Scottish Lib Dems' Autumn conference. Ken said that if you became blind as the result of an accident today, it would take a year just to get used to being blind, let alone being ready to get back into the labour market.

At our Federal Conference last Autumn, we passed a motion which called upon "Liberal Democrats in Government to oppose an arbitrary time limit on how long claimants can claim Contributory ESA". To me, that means that our people in the Lords should vote against the time limit. The views of Conference are pretty unequivocal and the motion was passed with very little opposition.

If you haven't done so already, please get in touch with Liberal Democrat members of the House of Lords. A full list is here. Tell them briefly why you think this time limit needs to go.

Bear in mind that previous votes on the Welfare Reform Bill, including the one where 14 Lib Dem peers defeated an element of the Housing Benefit proposals, have been very, very close. It is possible for this vote to be won. We members can encourage that process so I would urge you all, again, to write to as many peers as you can, to give them an indication of the strength of feeling in the party. Please feel free to copy and paste this post into e-mails, tweet it, share on Facebook and spread the word in as many ways as you can think.

We don't have long, but if we don't get rid of this time limit, sick people will start to suffer in less than 3 months' time. That should be enough motivation for us to devote some time to this today.

Cameron Disability Gaff

2012-01-08T00:19:00.004Z

So, as we gear up for the biggest disability campaign of our lives, as we aim to make disability and welfare reform an issue people are talking about, as supporters, charities, celebrities, and journalists line up to make one last, united, comment on the welfare reform bill, David Cameron, our Prime Minister has to apologise for a disability gaff.

According to the BBC, Cameron said of Ed Balls,

"He just annoys me. But I'm very bad, in the House of Commons, at not getting distracted, and the endless, ceaseless banter, it's like having someone with Tourette's permanently sitting opposite you."

http://www.bbc.co.uk/news/uk-16458524

Our very own Nicky Clark @mrsnickyclark gets a prime BBC slot to challenge the very disregard and carelessness we will be challenging in our report.

In the article she says,

"If we're supposed to look to him as some kind of lead, is this the best we can expect and disabled people expect?"

"This comment comes in the middle of a piece about a fairer Britain. How fair is Britain going to be for disabled people if this is the lead we get from Downing Street?"

It seems fitting to me that in a week where disabled people plan to launch the biggest, united response to government for decades, Mr Cameron should be so careless. It is this very ignorance that underpins the welfare reform bill.

First they ignore you. Then they laugh at you. Then they fight you. And then we win.

2012-01-07T20:21:00.000Z

By Kaliya Franklin

Some much needed positive news....

As most of you know Sue Marsh has been co-ordinating a report researched, authored and funded by sick and disabled people which is released formally on monday.

As happens with every government welfare report, mysteriously, details leaked out to the media yesterday and so the coverage has already started. It turns out that Boris Johnson's submission to the DLA reform consultation which closed in February 2011 was the smoking gun we needed - and the government perhaps hoped no-one would ever find? The Mayor's submission stood out from the other consultation responses, not because it was supportive of our claims (almost all the submissions were) but because it was incredibly thoughtful, well written and researched. Some people are concerned that this may be to do with the forthcoming mayoral elections. Whilst we understand the concern, we do not believe that is the case as the Mayor's submission was completed in February 2011 along with all the other submissions. It would be very helpful if we could all let Boris Johnson know how much we appreciate his carefully considered and supportive statement over the weekend.

We must keep up the momentum over the weekend to ensure this becomes an even bigger story.

We all need to pull together to make this happen. If everyone shares the news on their facebook, twitter, google+, blog, email list, friends, family etc we can keep the focus on the report.

AllBigIdeas is collating a list of the news articles here and so far we've had coverage in:

The Guardian, The Telegraph, The Mirror and The Mail!! Yes, you read that correctly. No you're not dreaming. The Daily Mail have actually covered a welfare story, from a welfare campaigners perspective and had to include the fact that the fraud rate for DLA is only 0.5%. (Thanks to the lovely, lovely lady at the Mail - yep, amazingly there are such people - for making it happen) Left Foot Forward have always led the way amongst the political blogs with their support for sick and disabled people's campaign against the Welfare Reform Bill and have gone above and beyond the call of duty to help us. They would never ask us for anything in return, but one way we can all thank them for their support is to ensure their articles are widely publicised.

So please, share these stories everywhere, with everyone you know. Leave your opinion in the comment threads, email the papers, contact your local media, tell everyone and anyone. Keep watch here, on Sue's blog and The Broken of Britain and Where's The Benefit for us letting you know the latest developments and most of all take a moment to step back and think.

Finally we are breaking through. We can be ignored no longer. We have truth and justice on our side. The next few weeks will be the fight of our lives, but no-one is better prepared for that than us. We are people who face and overcome challenges in our everyday lives bigger than many ever have to face in a lifetime. We are used to dealing with confusing bureaucracy, lack of proper support and having to find our own solutions. Above all we know how to endure, that however dark the night, tomorrow will be another day and eventually we find another way.

If you are scared, remember you are not alone. We have come together to show the true power of our community and that we will not be ignored. If you think you won't be affected by these cuts, remember those who will. If you think it'll never happen to you, remember anyone's life can and does change in an instant. We fight this battle not just for ourselves, but for you, your family and loved ones to make sure that in the darkest times of your life the protection you need and have given to us will be there for you.

With love from Kaliya and Sue.

"Alone We Whisper. Together We Shout"

**LET'S START SUNDAY WITH A BANG. IN THE MORNING, RT THIS, SHARE IT ON FACEBOOK, TELL YOUR DISABLED FRIENDS, TELL YOUR CHARITIES, SEND EMAILS, CALL IN FAVOURS. JUST 24 HOURS UNTIL LAUNCH DAY. A DUMMY RUN FOR THE MAIN EVENT!!**

Open Comment to Liam Byrne

2012-01-02T22:31:00.000Z

I just posted this in response to Liam Byrne's article in the Guardian.

"And what do you propose Liam? When you disappear off into your think tanks and focus groups?

For over a year, you have avoided meeting with me. You promised, but you haven't discussed your plans with sick and disabled people.

You talk of "unearned support" Liam, but this is the Guardian! Here, on these comment threads, we all know the details of ESA, DLA, contributory time limiting and independent living funds very well - almost certainly much, much better than you do Liam. We know about the hundreds of thousands terrified about what happens to those who CANNOT earn support. Until recently, we believed you gave it freely.

You have the audacity to attack an erosion of ESA?(time limiting) When it was your government who introduced this terrible failure? Your government who wrote the descriptors making it simply impossible for many conditions to qualify? "like employment and support allowance that working people have actually paid in for."

Then, you dare to criticise the appeals system for the failure of ESA? When you have ignored me and Kaliya Franklin and all others who have been trying to warn you for years? When we warned you repeatedly? when we tried everything, some risking their lives to engage with you? "current chaos in the assessment of those on disability benefits, with spiralling appeal times and poor back-to-work support, deeply troubling."

You let Ed loose in the Daily Mail then think you can throw us a bone with a few tag on lines about ESA and disability? We already know this is a pattern! Give the scroungers a good kicking then say something nice and fluffy about sick and disabled people in the Guardian.

NOT GOOD ENOUGH.

I strongly recommend you stop dreaming up ways in which the welfare state can be auctioned off to the highest private bidder - even planning the very systems in partnership with those very same businesses and insurers.

I suggest you :

Listen to the suggestions and alternatives of disabled people.
Look at our ideas and policy suggestions
Stop designing policy based on a complete disregard for the evidence
IMMEDIATELY stop reinforcing the scrounger narrative - it makes a Labour Party look utterly ridiculous and confirms dangerous stereotypes.

We will win the public Liam. I promise you. By 2015, we will have made this the "NHS 1997" issue.

So stop casting around for spurious, tough-talk soundbites, that conveniently stuff a few billion more in private pockets and get a real strategy on disability.

I suggest you do it very quickly indeed. Those prepared to apologise for these failures may retain some credibility.

The arrogant will simply be exposed as those who oversaw the biggest abuse of sickness and disability rights and protections since the welfare state was introduced."

Beautiful Words to Soothe the Abuse

2012-01-01T17:35:00.002Z

I'm not going to wish you all a Happy New Year.

If you're anything like me, a very long illness tends to erode the goodwill attached to the "Tomorrow everything will be perfect" illusion.

Today, everything will be as good as I can make it. Today, I will be as strong as crohn's allows. Today I will take the blows and live with them.

I won't link to the blow this morning brought. I won't give the Mail or Mr Miliband any more attention than they deserve. I will share this with you instead.

Only you will understand what it really means. May it remind us all how astonishing, resilient and tenacious we are. Just to have lived this long and still have hope.

"There is a brokenness out of which comes the unbroken,

a shatteredness out of which blooms the unshatterable.

There is a sorrow beyond grief which leads to joy

and a fragility out of whose depths emerges strength.

There is a hollow space too vast for words

through which we pass with each loss,

out of whose darkness we are sanctioned into being.

There is a cry deeper than all sound

whose serrated edges cut the heart as we break open

to the place inside which is unbreakable and whole,

while learning to sing."

~ Rashani

The BEST present for 2012!!

2011-12-31T21:56:00.000Z

Just a very quick update to say I just saw the first designed copy of our report.

I printed it out and keep picking it up, a little in awe, and flicking through it.

It looks so cool! Amazing what a difference design makes eh?

And the thought occurred to me : That's it! We have a report!

Even if everything else goes wrong and every printer in the country goes down with glue poisoning or ink fever, we have an electronic copy.

That's the best New Year's present I could have had.

HAPPY NEW YEAR EVERYONE :)))

A year in the Life of a Diary

2011-12-31T10:29:00.000Z

Fighting Fund!

2011-12-28T17:58:00.000Z

The DLA research is almost complete. We have raised £2885 which is quite simply, miraculous.

DONATE HERE

Now, I'm not a businesswoman. I'm not a politician. I don't have a nice warm office full of tech and techies. I don't have independent resources.

When I originally asked if you wanted to do this, I had no idea VAT would be added to the printing costs (like I said, I'm not a businesswoman) and I'm sorry to say that I didn't realise the funding site and PayPal would take 10% of the donations. Finally, I had no idea that meeting the incredibly tight deadlines over Xmas would add 50% to the printing costs.

There are just a few days left before I have to pay the printers.

Please, I know it's Xmas, I know times are very, very tough, but anything you can donate will help to make this a reality. Tell your friends, ask your Mum, sell the dog's blankie - but give what you can.

DONATE HERE

I've had great media interest, but that means people have to get to London on the day the report is released to give interviews - we are all unwell or disabled, so a base to recover from and de-brief will be vital. There will be transport costs, phone charges and internet time to pay for.

As this project has evolved, it has grown beyond all recognition. It has taken on a life of it's own. I am no longer producing the report, the report is producing me! It's also nearly killing me and anything I can do to pay for things I would otherwise have to do myself is becoming more urgent by the day.

It's exciting - thrilling even, to see what we can achieve - what we have achieved just by working together and believing in ourselves.

So please, RT, share, email and beg - I am beyond pride, I don't have the time. Let's have one last push and see if we can hit the £3,500 target. Let's be heard.

Let's WIN.

DONATE HERE

God Bless us Every One!

2011-12-23T15:42:00.000Z

As I frantically try to tie up as many loose ends as possible before tomorrow, I couldn't log off for Xmas (actually Dave is going to lock my computer in a drawer for 3 days!!) without a few seasonal thoughts.

The last two weeks have been mind-blowing. As soon as I launched the appeal fund for DLA research, it was as though the disabled and spoonie community went into overdrive. Were we all waiting for a focus? Did we all just decide that fighting was the only option left to us?

When my DLA rejection post went viral, it was as though the universe conspired to give our campaign a boost just when we needed it most.

We raised the first £2000 almost immediately. When I checked last, we were over £2,500 and donations are still coming in. The generosity, trust and optimism you are showing is overwhelming.

Over 200 people have volunteered to be "Constituency Reps" and send the research to their MP on the release date.

Charities, media and even politicians have rushed to help behind the scenes - the response has surprised no-one more than me.

On twitter, people are springing up with their own ideas for the New Year, ways to maximise the impact of the research or get our vital messages to peers before the House of Lords return to debate the welfare reform bill in the New Year.

Lib Dem peers have received literally hundreds of messages about Time Limiting ESA.

The change in attitudes and confidence is remarkable. Something seems to have convinced you all that we CAN do this, and the more of us that believe it, the more chance there is of it coming true.

It occurs to me that this IS the Big Society Dave. This IS a Movement for Change Labour!! Yet how ironic that none of you engage with it? Clearly this is not the kind of participation you were hoping for.
We won't go away. We won't all drift off once you use your privileges to force your incoherent bill through parliament.

We've learnt that we can DO this. We can do it on our own. We can build support and friendships, we can help each other out. We can network and every day that network grows. Every day more people learn about our fight and every day they join our campaign.

If we can do this in just over a year, can you imagine, Dave, how annoying we will be by next Christmas? Can you imagine just what a PR nightmare we will become? Is it not better to just engage with us now, before it's too late? Before you take a step you cannot turn back from? Before you introduce policies that are going to see a steady stream of cancer patients at soup kitchens and wheelchair users begging on the street? Does it really have to be this hard?

We are the Big Society. We are the Good society. We might even be Alarm Clock Britain and the Squeezed Middle - it really is time you considered that. We are a constituency of millions, we are intelligent and capable. It's time you considered that too.

So guys, pour a glass of eggnog, pull up an opiate and give yourselves the most enormous gold star!!

As The Broken of Britain so eloquently remind us - "Alone we Whisper, Together we Shout."

Have the happiest, most joyous of Christmases and every single one of us has the gift of knowing that we're not alone any more.

Time to Choose

2011-12-21T12:13:00.000Z

Good news!!! We hit the target for the research fund!! Yep, It's finally back up and running and has surpassed the £2,000 target!! Wonderful news and quite thrilling.

The research I'm co-ordinating is very nearly finished, printers are booked, envelope stuffers recruited, designers designing, researchers burrowing, PR team talking themselves hoarse, briefers briefing, analysts analysing and we have pledges from over 150 different constituencies to personally email a copy of the research to their MP on the release date. If you would like to volunteer as "constituency rep" just leave a comment below leaving a name and constituency. All you have to do is email your MP a copy of the research on a certain date at a certain time (to be confirmed) with a covering letter asking them as a constituent to please read it and respond. (Template letter will be provided.)
You can email me on suey2yblog@hotmail.co.uk

The response has been overwhelming, and I'm confident we can put together a very comprehensive media response. Again if you would like to volunteer to speak to journalists or make phone calls, leave your name below. Again, email me on suey2yblog@hotmail.co.uk

If you live in Sussex, you can volunteer with the envelope stuffing or addressing. (7th & 8th Jan)

If you have a courier firm you can save us some money ;)

If you have design or print experience, please get in touch.

And between now and the next debate of the welfare reform bill in the Lords, (11th Jan) RT everything on twitter, post everything to Facebook and ask people to share. Make as much noise as you possibly can. Keep the emails and letters going to Lib Dem Peers and Crossbenchers https://mail-attachment.googleusercontent.com/attachment?ui=2&ik=51bddf73de&view=att&th=13457243d7d0b796&attid=0.1.1&disp=inline&safe=1&zw&saduie=AG9B_P_lB1l0iRUbrf4HvArsAsO7&sadet=1324469485508&sads=djEAXwKC_ZZYhnL-0f5GmnwyhHg
http://www.libdems.org.uk/peers.aspx

So this is my question. Would you like me to let the research fund run and use the money to maximising the impact of the research, or shall I stick to the original target?

With more funds we can mail out more copies, make more phone calls (at the moment I'm just using three of my own phones!!) and basically pay for some of the things we would otherwise have to do ourselves, ie driving things to London, sending people to meetings etc.

I will post a full breakdown of accounts once the report has been released so that you can see where all the money went.

At the same time, some may feel that a target is a target and it is unfair to move the goalposts. Please feel free to give an honest opinion.

Please tell me what you think below.

Sue

The Men in Black

2011-12-20T07:38:00.001Z

How totally odd my life has become.

I wrote an innocent little post about my own DLA application and then spent 48 hours in the eye of a twitter/media storm.

The DWP press office got at least 300 messages over the weekend, it was the biggest post on Labour List ever, celebrities and politicians were re-tweeting it, articles were written referencing me and twitter was flipping messages at me so quickly, I don't think I will ever be able to reply to everyone.

Some really good publicity came out of it though, and hopefully, there will be more.

The DWP scored a terrible own goal and made it worse by only issuing a very short statement claiming they "do not comment on individual cases" Immediately, twitter bombarded them with all the "individual cases" of fraud they have been quite happy to comment on. They have been asked repeatedly for confirmation that they stand by their statement, but so far, have not replied.

Meanwhile, in a parallel universe, the DLA research I'm working on gets bigger by the day. More to do, important people to bring on board, media contacts to prep, delegation to do, referencing to finish (yuck!)
Had you been a fly on the wall of my car yesterday as I tried to co-ordinate project-chaos from a Peugot 406 somewhere on the M25 while fielding calls from C4 and the BBC about the blog post, you'd have made me a nice sweet tea and sent me for a lie down.

(The irony of all this happening on a trip to hospital did not escape me - fit for work Iain Dunky-Smith??)

Anyway, I've been wondering more and more at which point the Men in Black knock on my door? Maybe I'm getting paranoid, but it's easily done, considering. I wonder if there really is a Department for Silencing Annoying Girlies. or perhaps an Operation Intimidate Bloggers that no-one knows anything about?

I wonder if, as I type, a zoom lense is trained on my washing up from last night? (Thai food take out Mr Pap) Perhaps some private dick having a little rummage in my recycling? You know that bloke I keep seeing in the blue car.....

I exaggerate. No, no, I'm sure a nice little dollop of discrediting would do it eh? I can see the headlines now - "Sue Marsh and her Jammy Dodger obsession" "Disability Campaigner has an aunt who has a sister who eats babies" "Silly girl gets facts wrong" Something like that eh? We've all seen it 100 times. Fortunately, there is zero chance of anyone finding me dogging in Camden or dressing up as a Nazi, so that's OK.

Perhaps I just need a nice little rest.

The Very Definition of Irony

2011-12-17T15:07:00.000Z

I am Sue Marsh. Disability Campaigner.

With just 4 or 5 weeks to go to save Disability Living Allowance, I am working flat out on major research aimed at protecting 3.2 Million vulnerable people from losing benefits that they rely on to survive.

I have severe crohn's disease. Probably one of the most severe cases in the country.

I have had 7 major life saving operations to remove over 30 obstructions (blockages) from my bowel.

I take chemo-shots every two weeks that suppress my immune system, ensuring that I regularly have to fight infections. Exhaustion, pain and nausea plague every single day of my life.

I have osteoprosis and malnutrition.

I have had major seizures and a stroke.

Nonetheless, I have just heard from my own Disability Living Allowance application, that it has been rejected. Completely. I will receive no support at all from DLA. Despite claiming successfully in the past, despite only getting weaker and more frail and less able to live independently, my reconsideration was rejected.

The only option now is to appeal. I will have to fill in a horribly complicated appeal form over the Xmas period, wait up to one year to go to tribunal, and probably go bankrupt in the mean time.

The state will pay thousands to hear my appeal.

The only conclusion I can come to is that if I don't qualify for DLA, no-one with bowel disease can.

The reasons they gave for the original rejection were nonsensical and didn't relate to he information I had given on my form. Today, the letter refusing my reconsideration had no details at all.

I honestly thought that sense would prevail. DLA is not (yet) ESA and decisions are usually taken with at least some logic.

So do I carry on fighting for DLA for 3.2 Million or fight for myself? There simply aren't the hours in the day to do both. There's no contest is there? The 3.2 Million must come first. The deadlines are even the same!!!

I just need some help. I cannot clean my home properly any more. I often can't look after my children or even myself. My husband takes more and more time off work to care for me. It costs me £70 in petrol every time have to go to the specialist hospital 130 miles away from home. I must spend more on good quality food, or I just get more ill. I don't want the world, I just want to survive.

What an utter, utter waste of time and resources.

Research Fund - URGENT UPDATE

2011-12-15T13:09:00.001Z

Some of you will have noticed that it is no longer possible to makements to the Research Fund Appeal

It would seem that PayPal have a limit on received funds of £1,900!! Just £100 short of our total!! The government require them to verify accounts that receive more than this in one year

I have submitted my details, but am not sure how long it will take for the restrictions to be lifted. Sadly, I believe it will be 2-3 days, though obviously, if it happens sooner I will let you know.

Happily, thanks to your overwhelming generosity, we have plenty of funds to get on with printing, so we achieved what we set out to do. The research will be produced and when we are able to we can collect the final £100 for distribution costs.

Once again, a million thank yous - for your trust and your support and sorry for any inconvenience.

Sue

We Won Something!!!

2011-12-15T08:15:00.000Z

Last night, Peers voted against the government to support Lord Best's amendment on housing benefit and spare rooms. There's a very good summary here: http://www.politicshome.com/uk/article/41983/lord_best_benefit_cut_treats_homes_as_transit_camps.html

The were defeated by a majority of 68!! 72 Crossbenchers, 14 LibDems and even one Conservative! (Lord Newton of Braintree, we salute you!)

Here are the Lib Dem Peers who voted against the government :

Eric Avebury
Brian Cotter
Archy Kirkwood (former Chief Whip in the Commons)
Veronica Linklater
Ken Macdonald
Sue Miller (former Liberal Democrat Home Affairs spokesperson)
Roger Roberts
Ros Scott (former Party President)
John Shipley
Trevor Smith
Matthew Taylor (former chair of the party’s Campaigns and Communications Committee)
Celia Thomas
Jenny Tonge
Geoff Tordoff (former Chief Whip in the Lords)

Ben Stoneham abstained.

(Hat Tip to Lib Dem Voice http://www.libdemvoice.org/14-liberal-democrat-rebels-help-defeat-housing-benefit-cuts-in-the-house-of-lords-26224.html )

In plain terms, it means people in social housing with a spare room cannot be forced to downsize and the government have to go away and come up with a better plan. This is particularly important for disabled people who may have had adaptions made to their homes to live independently or who need a second room for a carer.

The Lib Dems originally stopped the government from cutting housing benefit by 10% for the long term unemployed so this is clearly an issue they are prepared to fight on. It's too early to tell whether this is just an extension of their commitment to protect tenants, or part of a broader willingness, to take policies within the welfare reform bill on merit.

That's all we ask, after all. That EVERY policy, every proposal is discussed on MERIT and peers vote accordingly.

Either way, it's a welcome change :)

**Update : The Research Fund raised a spectacular £1,900 so far in less than 24 hours. Please keep donating and spreading the word, thank you so much for your generosity.

DONATE HERE

Research Fund - Fighting Disability Cuts

2011-12-14T09:09:00.002Z

For months now, I have been working on vital research. There are only a few of us, all unpaid, all seriously unwell or disabled.

We have no funding, we are not a charity or an NPO. We do what we do because we are desperate. Because it is our lives being decided in Westminster, our futures in the hands of remote politicians.

We do it for the people who can't fight for themselves, for those who may not even know what is being done in their name. We do it for the people who have shared their stories of fear or desperation or hardship.

We have given our time and what precious energy we have to presenting evidence and testimonial to politicians who have been all to often, unwilling to listen.

Now, time is running out. We have just a few more weeks to present our research to MPs, Lords, the media and the public. We need to get our work to the printers, we need envelopes, we need stamps. We want to make sure that every parliamentarian has the evidence in front of them before they vote for the final time, before they pass the welfare reform bill.

The vote will abolish the Disability Living Allowance, I must try to stop that. The voices of the sick and disabled have not been heard. I have to change that. People are suffering every day.

Please, give what you can afford. Do NOT give more than you can afford. £1 will get us closer to our target. £3 will pay for 6 MPs or Peers to see our work. £20 will mean that 100 parliamentarians with the power to change the bill have all the evidence they need to make a balanced decision.

I've never asked you for money before. I wouldn't be asking now if I didn't think this could make a real difference.

Thank You.

Click Here to Donate

Update : WOW! We have already raised nearly £600 in less than 3 hours!! Thank you all so very very much. I wanted to share some of the comments that people have left as they are so very touching.

"I'm sorry I don't have the time or the spoons to campaign with you guys anymore. It hurts me that I can't, but I've been working since May (self-employed, choosing my own hours, not too much a week, pretty much a dream job for a spoonie) and it's been draining me far too much. So here, have some money, and please use it to keep fighting for the DLA that allowed me to start working in the first place."

"I thank you with all my heart for the work you do especially as you are so ill yourself. No words can express my appreciation. (Partially sighted, chronic cervical spondylosis and ESA time limit anxiety sufferer!)"

"Now we see the true Big Society in action. People who despite being ill and impoverished are helping each other. I can only give £5 but I feel it will help - not only financially but as a symbol of the strength we have when we support each other and work together. I am so proud to be a part of this and to see people's kindness and generosity. Thank you."

"Glad you finaly asked for help, lets us feel like we are also supporting even if we cant do as much as you!"

"I've followed your campaign everyday since the beginning. I don't have the energy to get involved so I am glad to have this opportunity to do a little bit to help with what you do."

DWP - No Hawkers or Circulars - (Not Even Xmas Cards from Disabled People)

2011-12-13T19:44:00.001Z

There is no other explanation. The DWP are simply aiming to score as many own goals as they can before Xmas.

Today, a delegation from the Hardest Hit including the RNIB and UK Disabled People's Council attempted to deliver a Xmas Card to the Department for Work and Pensions signed by nearly 24,000 disabled people, their carers, families and friends.

Whoever they tried to hand it to at the DWP (Scrooge?) repeatedly refused to take it!! Suddenly, Downing Street were involved, The Disability Alliance, Lords on Twitter and any other number of influentials went into a spin.

Disabled groups reacted with astonishment and outrage. Maria Miller, who cannot open her mouth without stuttering the claim "We work closely with disabled groups" (Though there is no evidence of this whatsoever, some say she has just been wrongly programmed, and they are ironing out this software glitch.....) wondered for a while if her cover had been blown.

Rest assured though, the DWP say:

Re #hardesthit petition – simple misunderstanding. DWP always happy to accept any such petitions. Spoken to Disability Benefits Consortium inviting them back. We work closely with disability organisations and disabled people

Phew! That's OK then, cos for a second there, we thought they weren't interested in hearing what we have to say. Oh wait.........

Now it's Real. First Cancer Patients, Now Government slash benefits for Disabled Children

2011-12-13T09:44:00.000Z

Last night, the House of Lords failed to support an amendment put down by Tanni Grey-Thompson, the most successful paralympian of all time, to protect the benefits of disabled children once Universal Credit is introduced.

You can read more here http://www.family-action.org.uk/section.aspx?id=14225 but effectively, under universal credit, all but the most profoundly disabled children will only get half as much support. Child Tax Credit additions for disabled children will fall from £52.21 per week to £25.95 per week - a loss of £1366 per year, or £20,000 over the course of a childhood.

You might wonder what possible argument a government who promised to "protect the most vulnerable" could possibly make for this change. I myself was fascinated to see how on earth they had justified throwing disabled children to the wolves.

Ready? OK, if they didn't betray disabled children, it would just have to be disabled adults. After all, disabled children have parents to look after them. What's more, if they didn't cut money used to buy wheelchairs and incontinence pads for disabled children, they wouldn't be able to afford to address the hideous failures of ESA (Employment and Support Allowance or sickness benefit) and ensure that all those who qualify for long term support, get it.

Could there be a more disgusting example of divide and conquer? Each man for himself. The image of a Victorian gent throwing a handful of pennies on the floor and leaving the cripples to fight it out amongst themselves comes to mind.

And remember, this is no longer theory.

I've been writing about these issues for 18 months now, sadly my blogs have often contained doom and gloom predictions of horrors to come. Well last night they started to come in a first blaze of in-glory. The Welfare Reform Bill is now at Report Stage in the Lords. These votes will almost certainly decide what becomes law and what doesn't. For disabled children, now it's too late.

Shame on us.

There is one more session before Xmas. Then 4 sessions after Xmas, then the final no-going-back vote to pass the bill. There is still time to lobby peers. There is still time to stop the time limiting of ESA. http://diaryofabenefitscrounger.blogspot.com/2011/12/time-limiting-esa-template-letter-to.html There is still time to oppose PiP and abolishing Disability Allowance. http://onemonthbeforeheartbreak.blogspot.com/ There is still time to fight Clause 52 http://www.guardian.co.uk/commentisfree/2011/dec/08/conservative-compassion-disabled-sick and housing benefit changes that will leave thousands of sick and disabled people at risk of homelessness.

In a week where the government suggested all cancer patients undergoing chemotherapy ought to be assessed to see if they can work or not, I can only wonder where this will all lead. I can only hope history is no guide the future

If I can find any tiny silver lining, it is that we only lost by 2 votes. That is the closest vote I have seen so far.

2 votes. 2 Lords. 2 letters, 2 emails, 2 tweets.

There is still all to play for, but sadly disabled children just fought the last stage of their fight. And lost.

Cameron's Terror - No Election needed if Coalition Fails

2011-12-11T11:22:00.001Z

The blogosphere and Twitterati are fizzing and sparking with excitement today.

It seems Mr Clegg and Mr Cable are furious about the EU fiasco and might even stamp their feet a bit.

Clearly, this has led to much discussion of elections. Will Hutton in today's Observer now feels the coalition cannot possibly last until 2015.

I have no opinion. A party that has already moved so far on issues that would have seemed impossible before the election is no longer one I can possibly read. They are already supporting an economic plan that is failing, just as they said it would before the election, a tuition fee rise that is hurting, just as they said it would before the election and the privatisation of the NHS (again something they opposed before the election).

Nonetheless, the point of this post is to share a little democratic procedure.

There would not need to be an election if the coalition falls apart. In fact it is quite unlikely that there would be.

The fixed term parliament act, passed on 15th September, 2010 as part of the coalition agreement, changed the way elections can be called. This is from the parliament website :

"There are two provisions that trigger an election other than at five year intervals.

A motion of no confidence is passed in Her Majesty's Government by a simple majority and 14 days elapses without the House passing a confidence motion in any new Government formed
A motion for a general election is agreed by two thirds of the total number of seats in the Commons including vacant seats (currently 434 out of 650)

To translate, if Clegg, Cable et all jump ship, all parties have 14 days to form another government. Effectively, Labour and the Libs with a few "others" can form a government and no election will be called.

To simply call an election randomly, and dissolve parliament, the coalition changed the rules. Now, 66% of MPs would have to vote against the government in a vote of no confidence. Translating this means that, effectively, it is not possible in practise to get the required vote. It would mean every Labour MP, every LibDem MP, every "other" AND a further 91 Conservative MPs prepared to vote against their own government.

So, to all the commentators and talking heads arguing over whether the Conservatives could win a majority now or indeed, whether Labour could, it is irrelevant.

Liberal Democrats could simply leave the coalition and form a government with Labour, the Greens and others. All they have to do is vote against the government in a vote of no confidence.

Whether they would or not is another matter, but according to law, that is the process.

It seems almost no-one knows this. All are discussing a possible election.

One things is utterly sure however. Mr Cameron knows it. Mr Clegg knows it. And so does Mr Miliband.

Time Limiting ESA - Template Letter to Lords

2011-12-10T11:21:00.001Z

Yesterday, I asked you all to write to a Lib Dem peer and plead with them to vote against time limiting ESA to just one year.

Template letters are certainly less effective - many parliamentarians won't open more than one or two of them. However, they are better than not writing at all. For every peer who receives 5, 10, 50 template letters, at least they get to see the strength of feeling people have over an issue.

If you don't have the confidence to write your own, please use this one. Peers might also remember that I write for disabled people. Many cannot write a letter themselves. Due to physical or mental disabilities, I have often had comments from those so very grateful that a template letter I have provided allowed them to engage democratically.

*************

"Dear .........................

I am writing to you in the hope that you will vote against time limiting ESA to just one year in the coming welfare reform bill Report Stage and Third Reading.

-700,000 people with serious illnesses and impairments will be affected by this policy, many losing any right to an independent income. http://www.dwp.gov.uk/docs/esa-time-limit-wr2011-ia.pdf

-The means test is set at just £7,500 per year, meaning that a partner must support an unwell or disabled loved one if they earn more than this.

-Families already overwhelmingly living in poverty will lose £4661 per year. This is three times as much as higher rate taxpayers will lose in child benefit.

-This policy only affects working families and savers as it only applies to those who have contributed NI or have savings over £6000.

-It is a disincentive to work and will only encourage families to break down http://www.dwp.gov.uk/docs/esa-time-limit-wr2011-ia.pdf

-The only justification ministers have given for this policy is that "We can't afford it" Sick and disabled people with limited capability for work are conflated with jobseekers as ministers claim ESA must be brought into line with JSA

-Ministers admit that 94% of those affected will not have found work by the end of the year. They also insist that it is irrelevant whether or not they have recovered. http://www.dwp.gov.uk/docs/esa-time-limit-wr2011-ia.pdf

-People with serious, lifelong, and degenerative conditions will all be affected by this. People with MS, Cancer, Parkinsons, Bowel Disease, Kidney Failure, Heart Disease, Lung Disease, Schizophrenia, Bi-Polar and many many more conditions will lose benefits, left in limbo until they are judged unable to do any kind of work at all,. http://www.publications.parliament.uk/pa/cm201012/cmselect/cmworpen/1015/1015vw44.htm

At your annual conference this year, Liberal Democrat members voted overwhelmingly to oppose an "arbitrary time limit" on ESA. http://carons-musings.blogspot.com/2011/09/please-support-glasgow-norths-brilliant.html Please, please, stand by the wishes of your grassroots and of your party and oppose this cruellest of measures.

We are relying on you to help us. Only Liberal Democrat peers can provide a majority and ensure that a one year time limit on sickness benefits is not made law. Please, you promised to protect the most vulnerable and if ever a policy hit the most vulnerable the hardest, then it is time limiting ESA.

Many thanks

........................

************

Here is a link to Lib Dem Peers. Simply click on it, pick a letter of the alphabet at random, and copy and paste in the letter. http://www.libdems.org.uk/peers.aspx

The more you can do, the more we can persuade. Thank you.

Finally, please keep up the pressure and RT, share on Facbook, email to friends and feel free to cross post this.

Time Limiting ESA - We MUST stop it

2011-12-09T16:58:00.001Z

It seems that the Conservatives are simply not willing to give an inch on Time Limiting ESA.

Just to be clear, this means that if you have worked and paid national insurance contributions you will face an assessment. If that assessment finds that you are indeed unwell, but may be able to do some work at some point, you will only qualify for support for a year.

At the end of that year, no matter how ill you remain, if you have a partner who earns just £7,500 or more, or limited savings, you will lose all ESA. All of it.

Those with long term, serious illnesses, mental health conditions and learning disabilities are likely to be the worst affected. Sickness benefits as we know them will become a thing of the past. Just 6% of new claimants will qualify for long term support, the rest will have just one year.

I have written about time limiting extensively here (click for article)

The government accept that 94% will not have found work at the end of that year. They accept that they will not have recovered. They simply say "We can't afford it" http://www.publications.parliament.uk/pa/cm201012/cmselect/cmworpen/1015/101502.htm

The only way we can now stop the government from going ahead with this most horrifying of policies is for Lib Dem Lords to vote against it.

Earlier this year, Lib Dem grasroots members voted for a motion and amendment at their conference opposing an arbitrary time limit for ESA. The vote was overwhelmingly in favour.

Here is the amendment in full :

After C. (line 25), insert:
D. That vulnerable cases like this, where a welfare recipient’s income is threatened ,should qualify
for free legal representation.

Delete 2 (line 35) and insert:

2. Liberal Democrats in Government to oppose an arbitrary time limit on how long claimants can
claim contributory ESA.
In 3. (line 36), after ‘representation’ insert: ‘and expert advice, and for Government to reconsider
the exclusion of welfare benefits casework such as this from the scope of legal aid.

After 3. (line 36), add:
4. A presumption that ESA claimants with serious and uncontrollable life-threatening conditions
should be allocated to the support group rather than the work related activity group.

5 A review of ATOS performance in delivering the Medical Services Agreement contract with
DWP in respect of the quality of medical assessments.

6. Effective contract compliance for contractors carrying out ESA eligibility assessments to avoid
poor performance, and a presumption that in future ESA eligibility will be carried out by the
public sector or non-profit organisations.

Once this vote was carried, opposing the time limiting of ESA became Liberal Democrat policy.

Today, I'm asking all of you - Liberal Democrat or not - to write to a Lib Dem peer and beg them to oppose the one year time limit. Here is a list of Lib Dem peers http://www.libdems.org.uk/peers.aspx

Simply click on a letter at random, pick one and write to them. Beg them. Explain it to them. Feel free to send them my articles. Remind them about their conference pledge.

They're our only hope. If they support the Conservatives on this, despite the wishes of their members, 700,000 people will be affected. People with Parkinson's, Bowel Disease, MS, Cancer, Heart Failure, Kidney Failure, Lung disease, Schizophrenia, Bi-Polar and any other condition you can think of.

Please, write today. Then write again. Pick another peer and then another and keep writing until after Xmas.

Very early in the New Year, Lords will vote on this issue for the final time. It is only this vote now that stands between time limiting ESA becoming policy.

Please, if you've ever sent one of my letters, every RTd an article because I asked, every written to your MP, every written a blog post or an article, please, do this. Keep doing it until the day of the vote. Tell everyone and ask them to write too.

The welfare reform bill is almost law now. We don't have very many opportunities to make a difference. Let's make a difference over this.

**Feel free to re-post, share, RT and generally make sure that everyone knows, thanks.

The following articles may help:

http://diaryofabenefitscrounger.blogspot.com/2011/03/today-im-launching-my-new-campaign.html

http://diaryofabenefitscrounger.blogspot.com/2011/09/funds-already-in-place-to-go-ahead-with.html

http://diaryofabenefitscrounger.blogspot.com/2011/05/why-labour-still-have-it-wrong-on-esa.html

http://diaryofabenefitscrounger.blogspot.com/2011/03/welfare-reform-that-must-not-go-ahead.html

Pat's Petition http://epetitions.direct.gov.uk/petitions/20968

NHS Waste - Ask the Patients

2011-12-08T10:35:00.000Z

Funnily enough, I didn't set out to be a welfare warrior.

This blog was actually supposed to be about the NHS. I hoped that my 28 years of NHS in-patient experience might provide some solutions for positive reform. If you want to know where the NHS wastes money, just ask us patients.

As of yesterday, my medical team have advised me to stop taking the chemo-shots. They don't seem to be doing anything to control my crohn's disease, and because they are such strong immuno-suppressants, I get every last sniffle the boys come home from school with and diligently nurture them into a chest infections or flu.

I've been ill for months and I'm getting so run down it's now dangerous.

Unfortunately, I've just had a delivery of the injections.

They cost the NHS £1000 each. Yep, every fortnight, I plunge a cool grand into my tummy via syringe. That's 24k a year.

I have 4 innocent looking little needle packs glaring at me from the fridge, sending my natural thriftiness into spasm. That's 4K of NHS budget. In a minute, I will have to take the boxes from the fridge, open each one, and squirt the equivalent of my entire yearly income down the toilet.

No-one else can use them you see as they might have been tampered with. (They weren't) Or stored at the wrong temperature. (They weren't).

They can't go back to the manufacturer or the hospital to help some other disease riddled wretch. I can't recycle them in any way. They won't even make very nice Xmas decorations.

Clearly there are simple solutions : 1) Don't send me four at a time. 2) Allow them to be used by someone else.

But for these 4 shots, there is nothing else to be done. I can hardly bring myself to do it.

When I was in hospital last time round, I was fed by central line with something called TPN (Total Parenteral Nutrition) Setting up the bags of feed is a devilishly tricky procedure and the feeds themselves cost a fortune. Around £1000 and you need one every day. They too must be refrigerated at the correct temperature and only have a 24 hour shelf life. They are mixed specifically for each patient's nutritional needs. Custom made, pre-digested enzymes and lipids, yum.

On three occasions my TPN went to waste. That's another 3K right there. One went to the wrong ward, one was left out of the fridge all night and one just didn't get put up in time.

If I were in charge of the NHS, it is these utterly senseless puddles of waste that I would crack down on. Surely there's a few billion to be saved in that idea George?

Did Freud "Mis-Speak"? Hansard think so. Do you?

2011-12-07T14:26:00.001Z

On Tuesday 8th November, the welfare reform bill Grand Committee debated Time Limiting ESA to one year.

Bns Hollis (Lab leader) pushed Lord Freud (Gov sponsor of the bill) to provide a financial breakdown of how much the measure would cost.

In reply, Lord Freud seemed to say, quite clearly,

"Well my Lords, you can see the process here clearly as you move through the bulge of effectively, stock, taking on the transfer from IB to ESA....."

As you might imagine, twitter (we were live tweeting the debate to a wider audience) immediately exploded with indignation. "Did he just call us STOCK?" one person asked and many tweets followed, astounded to hear us referred to in such inhumane terms.

Stock - what does it make you think of? Cattle? Commodities? Perhaps when discussing human beings there are worse connotations.

Well, it would appear that the Hansard report has this transcript,

"My Lords, one can clearly see the process here, as you move through the bulge, of stopping as you take on the transfer from IB to ESA."

This now makes no sense at all. I am assured that the job of those transcribing for Hansard is to make sense where they believe someone has spoken in error or where the grammar is not clear. With this in mind, perhaps they simply could not discern Freud's meaning and changed it to this garbled phrase.

However, it seems rather coincidental that a word that caused such offence, such fear and shock, should be the very word unavailable for posterity.

I'll leave you to judge. You can watch from 17.43 and decide for yourselves.

http://www.parliamentlive.tv/main/Player.aspx?meetingId=9328