Monday 27 February 2012

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 and HUGE aplause, congratulations and love to all who worked so hard. 

Sunday 26 February 2012

Responsible Reform report, Fundraising

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.

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.

Wednesday 22 February 2012

They don't like it up 'em

Well, well, well.

Diddums Dunky-Smith (So named after this Mail rant : ) 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.

Tuesday 21 February 2012

Anyone for Disability Ping-Pong?

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

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?


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 )

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.

Monday 20 February 2012

What WILL I do?

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.

Saturday 18 February 2012

Eternal Slavery for Sick and Disabled

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 :
The Guardian broke the story here :
And updated it here :

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 :

Wednesday 15 February 2012

What did that all mean then?

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?


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.

Tuesday 14 February 2012

Another crucial Day for Welfare Reform

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.

Today, peers will debate "Amendments in Lieu" of the original amendments peers voted through. You can see them here. 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 :

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. 

Wednesday 8 February 2012

Can you help Today with Research?

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 ;)


Tuesday 7 February 2012

Simplified Version of Draft PIP Criteria

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 

Monday 6 February 2012

PIP criteria - The Reality

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.

Saturday 4 February 2012

Geek Post

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. 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.

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

Friday 3 February 2012

Withhold Royal Assent from the Welfare Reform Bill

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.

Thursday 2 February 2012


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 : 


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. 

Wednesday 1 February 2012

Vote with your Hearts

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.