Thursday 20 December 2012

The Marmite Coalition

Conventional election wisdom says that Labour will struggle to win the 2015 election outright. If they do get the largest share of the vote, they will probably have to rely on forming a coalition with the Lib Dems.

I disagree.

The Labour lead has averaged about 11% for a very long time now, but it is true to say that the incumbent government always makes up ground when the reality of an election hoves into view. Even 15 or 20% leads can melt away to nothing when an election becomes a reality.

But this is not a normal time and normal rules don't apply. Not only do I think Labour will win an overall majority, I think the Conservative party as we know it will struggle to ever win an election again. The Tories know this (even if most of Labour don't) and have employed a host of tricks in an attempt to reverse the trend - reducing the number of MPs from 650 to 600, changing constituency boundaries, increasing the vote of no confidence thresholds and no longer making it compulsory to register to vote, would all favour the Tories. As it happens, the first two may never happen anyway, since Clegg withdrew support in exchange for betrayal over Lords reform.

But even if they did, it's too late. As soon as Cameron failed to win an outright majority, despite the worst economic situation for 70 years, a tired Labour party and a hugely unpopular Labour leader, it was clear.

The modern Conservative party as we know it is finished.

It took 13 long years for the public to even think about trusting them again. The scars ran deep. Even when they finally did, they didn't trust them to govern alone and fettered them with Lib Dem concrete boots.

There is a schism at the heart of the Conservatives that has fatally wounded the party. For 20 years, they've staggered on in denial, but the party is divided and nothing has been able to paper over those divisions. So called "compassionate Conservatives" were prepared to compromise dearly held right wing principles in order to govern, but too many will not.

You only have to look at today's media to see their dilemma. It's often hard to tell who hates Cameron more - Guardian readers or Telegraph readers. The right wing press pillory him daily for not being right wing enough, while the left leaning press cry with horror that this is the most right wing government of all time. The Daily Mail and the Telegraph demand "real" Tory policies, but Cameron knows a majority of the public will never vote for them.

Most crucially though, the political landscape has changed in a fundamental way and it will not change back in a hurry. If ever.

For over 30 years, the left leaning vote in the UK has been split. As soon as the "Gang of Four" left the Labour party in 1981, we may as well have taken a gun and shot our own feet. Disgruntled Labour voters would evermore have an alternative. Much as Clegg would deny it now, that is how the Lib Dems were born and right up until the last election, that is how they were seen. People voted Lib Dem for lots of reasons, but few because they were actually Liberals, and even fewer who were comfortable with the "Orange Bookers"

Of course, it's not unusual for the Lib Dems to see a big slump in their support mid-term and they will almost certainly poll more than the scant 10% or so polls have indicated since 2010. But the betrayal voters feel is real. I've lost count of how many people have told me they voted lib dem at the last election and never, ever would again. It's highly unlikely they will win anything like the 57 seats they hold today. It may well be that they could only offer 10 - 15 seats to any future coalition anyway.

For the first time in a generation, left leaning voters only have one place to go. They must vote Labour or risk  a right leaning government.

Right wing voters have no such quandary however. They can give up on the Conservatives once and for all and vote UKIP. If current polls are to be believed, many will do just that. UKIP regularly poll more than the Lib Dems and although this wouldn't necessarily translate to seats won, it will hurt the Tories very much. In many marginal seats it would only take a few hundred voters bailing to UKIP and the seat is lost. Not to UKIP, but lost all the same.

Of course, loyalty and logic may save the day. Natural UKIPpers may yet AGAIN be persuaded not to split the right wing vote, but I don't think they will. There comes a point where logic melts away and strategic voting is not enough. People vote far more with their hearts than their heads. If not, we would never have seen the left vote splinter in the first place.

I think natural right wing voters - the core Tory vote - have seen too many broken referendum promises, too many capitulations to Europe and immigration and crime. They know now that a Conservative like Cameron will never break away from Europe, never give them what they want. This was the last chance saloon.

Since the coalition came to power, they have divided public opinion in a way I've never seen in my lifetime. You either think they are making the best of a terrible situation, taking tough decisions and being cruel to be kind, or you think they are evil baby-eating-neo-cons who want to asset strip the country and eradicate the poor before 2015. There's little in between. On almost every policy question, just 29 - 30% support the government's position. This is core Tory vote territory and nowhere near enough to win an election.

Lurching further right won't help and sticking with a Cameroonian style fudge won't work. Even if some charismatic Tory appeared to unite the party and lead them to glory, screwing with the NHS can never be undone. The public might forgive many things, but they will never forgive anyone who breaks up the NHS.

The polls have been rock solid for many, many months now. Even the Olympics and Paralympics didn't offer a polling boost despite unprecedented national pride and feelgood factor. I've never seen polls stay so resolutely unimpressed through such hive-ecstasy.

As I've said all along, the cuts won't destroy this government, incompetence will. Cameron cheated the public once, then launched detested policies not mentioned in any manifesto. I am convinced they will not let him or - anyone standing under a blue flag - do it again.

Sunday 16 December 2012

The Twilight Times

Oh bloggy-wog, I am in a fix.

As most of you probably know, I am no longer at That Hospital. We must say no more on the matter for now, but it means I’ve had a terrible, painful and horrifying year.

For all its faults, I stayed at That Hospital for 18 years. Incredibly, The Great Twitter Incident wasn’t an isolated example of the patient “care” I had accepted as normal for all of that time. The stroke they insisted was just an attention-seeking panic attack; the operation I woke up from with no pain relief, writhing through 6 hours of torture until the pain made me lose consciousness; the bullying little nurse clique who sent me home haemorrhaging with a urine infection after they withdrew care a few days before they discharged me.

Why on earth would a human being accept that? What could possibly be worth all that desperation, humiliation and fear?

I am an odd medical phenomenon. I just don’t present in any way as a patient who’s bowel is blocked. I don’t get much inflammation or active disease, so my blood test results always come back fine. I don’t blow up like a balloon, so my physical examinations are always fine. To complete the set, my scan results rarely show much structural damage, so my bowel usually appears to be fine.

This meant that I spent my childhood being told that I was “just” anorexic, or “just” depressed and a six year wait for the diagnosis that would entitle me to any treatment.

Even at That Hospital, it probably took my consultant 5 years to truly believe the evidence in front of his eyes. Without fail, every time I got very sick indeed, the tests would not really justify surgery and every time, they ended up rushing me in as an emergency and finding impossible tangles of pus and ulceration and tumour-like blockages.

In the end, he just knew that we only really had my symptoms to go on and we settled into a fairly regular arrangement. I would take all the steps you must take to get the crohn’s under control myself – put my steroids up to settle any inflammation, modify my diet to the optimum healing regime, supplement my diet with liquid feeds for nutrition if necessary, administer painkilling injections for a few days to get over nasty little flares. I knew all the rules.

If all of those things failed and the pain just kept increasing, like an insistent child demanding immediate attention, it was getting serious. Super-Doc always stressed that there are a few lines in the sand you just do not cross. He trusted me to act sensibly and do the right things.

-If you bloat up suddenly, your abdomen becoming hard and rigid, it’s straight to A&E

-If the pain becomes constant, reliant on the strongest drugs to give any relief, things are bad.

-If I start vomiting continually, sweating and puking and heaving, hour after hour, you call an ambulance after 48 interminable hours.

-If a hard, distorted abdomen hurts more when you let go than when you press, it’s straight to A&E

-If I start to lose weight despite all of my efforts, I need treatment quickly, before I get so malnourished and underweight, surgery would become impossible.

There are funny little “stricture hiccups” you get when your bowel is blocked – more of a gasp-squeak than a burp and a stricture “talks to you” in a constant, rumbling rrow-rrow-rrow grumble.

So with all of those things in mind, it is far from impossible to diagnose atypical obstruction if you know what to look for.

But I have to start all over. Like a hospital virgin, I must wait coyly for invasion. No reason to need emergency treatment, no apparent cause for the unbearable pain, no belief in the possibility I could be endlessly vomiting. I have not yet passed the probation period, and as such, am guilty until proven innocent.

No-one at my new top-secret, undercover location has read my previous notes. (I know, but it’s true. I even had them couriered here at my own expense, but they sat unopened in a box for three weeks.) They haven’t spoken to my old consultant. They haven’t done any scans since August – convinced as they are that the first can only be good enough. They insist on treating me medically, repeating all the steps I have taken myself at home. They speak to me as though I only heard what crohn’s was yesterday, though I almost certainly know more about the disease than they do.

I have all of the signs I list above. At least once a week, they all come on at once and I writhe and vomit my way through 2 or 3 more intolerable days, delirious and frightened. I keep bouncing back to hospital, aware that these are symptoms that Must Not Be Ignored and each time, they intone the zombie like assertion that things-must-be-ok-because-the-book-says-they-are. Baffled and confused, I go home, bear it as long as I can, and then the whole cycle starts again.

We have reached an impasse. I believe that I am dangerously ill and like a drowning man, cling to my symptom-life-rafts. They believe surgery can wait and are convinced they won’t find much to do that will give me any comfort or relief anyway. I can’t phone my old consultant and they refuse to phone him themselves – why, after all, would world-experts in bowel disease need to trouble another world expert with something as simple as a diagnosis of obstruction? Oh the professional shame of it!!

So, I’ve tried everything, done everything I can to make my case. I can do no more. I must simply go home – over the Xmas holidays when emergency teams are thin on the ground if something goes wrong - and hope I survive until this mirage operation might become a reality. I must hope even more that this isn’t the time I’m wrong or I will never have any credibility with this new team again. The pressure is entirely on me to know when to insist, when to contradict.

My Mum and my husband, already on the brink of despair, must watch me writhe and oh-so-nearly-fade-away through each violent bout, powerless to do a thing about it. My kids must settle for Victorian style daily visits to my bedroom as they wait for Santa and decorate the tree. They watch their Mum, stagger from her bed, bathed in sweat, her bird-like legs carrying her agonisingly slowly to the bathroom, her lips blue and her hair wild. My room smells of disease; gloomy and un-natural with curtains closed.

I have no idea how a human could be expected to “just tolerate” this. But I am and I must.

Somehow, I must try to lose no more precious kilos, though days pass where even water refuses stubbornly to make it anywhere near my kidneys.

I imagine the surreal image of me, with my wonky paper hat and tinsel streamers, shoving needles in my arse under the dinner table, as Dave carves the turkey.

So just for you, George Osborne, a glimpse of what really goes on behind at least one set of closed curtains

Tuesday 20 November 2012

The Last Nail in PiP's Coffin?

With a sense of deja-vu, I just read Esther McVey’sassurances to Dame Anne Begg, chair of the work and pensions committee, that the government had consulted sick and disabled people over the design of PIP and taken their views into account.

Those of us who were involved in any way with the unprecedented success of the Spartacus Report know they are untrue as we comprehensively proved it nearly a year ago.

The government did not challenge any of the key claims we made in the report and so attacked it as “partial”. They claimed that as we had only analysed the group responses to the consultation, the findings were skewed. However, they refused to publish the other 5,000 individual responses to prove that they were telling the truth.

2,500 were template letters, most of which came from us, so we knew that they were all likely to be in some way critical of the policy. After months of raising awareness of the consultation online, we were fairly confident that most of the remaining 2,500 were sent in by our own supporters or would otherwise be critical of PIP.

This blog details the extraordinary events on the day before our own amendment calling for a pause to PiP went before the Lords. Lord Freud is forced to send a rebuttal of Spartacus Report to every peer. We almost immediately challenge the rebuttal publicly in a joint post on both my blog and Kaliya Franklin’s. 

Finally, the government had to promise to publish the remaining submissions to prove they weren’t lying.
They said that they would publish them in chunks over the coming year, as there were so many.

So, as I read Ms McVey tell the very same lies, I thought some of you might like to look into whether or not the DWP kept their promise, and if not, will they be doing so before 9th January next year?

Finally, if they haven’t released the responses or they have and they prove what we know they will – that the Department of Work and Pensions lied about them being less critical of PIP than the group responses – on which date would they like us to send the letter to every MP and Peer confirming that the entire case for PIP is dishonest?

Any of you who fancy doing a little investigating while I’m stuck in hospital why not use the comment thread to share what you find out with others and take the appropriate steps based on what you find out. Ie phoning DWP press office to ask why they haven’t been released or maybe FOIing the responses again with a link to the original FOI promising to release the 5000 responses.

I can’t find links very easily from hospital, so you’ll have to find the posts I’m referring to yourselves (they were January).

I think it’s worth doing though. This is one deadline we need to keep :
Date in Diary – The day we blow the case for PiP apart

'Elf and Safety

Britain, I’m frightened.

Something dreadful is happening to you and you don’t know.

But you’ll read my blog (indeed, if you ever get to see it at all, jumping up and down and nipping at the ankles of a vast and deafening corporate-press as it is) and conclude I’m just “one of them”

A career protestor or perhaps a selfish lobbyist only interested in maintaining the status quo.

You’ll snort with derision, or maybe give a superior tut and shake your head a little, then go back to school runs and gas bills.

So I’m going to put this as clearly and as simply as I can.

David Cameron wants to compete with India and China.

He believes that the only way we can compete in this global “economic war” is to be more like India and China.

So far, these two vast countries have not been overly concerned with the rights and comforts of their citizens.

No safety net at all for their workers, overwhelming starvation and poverty, sweatshops and near-slave labour keep wages low. Citizens have no rights and no access to justice

All of this means the worker simply has to work as many hours for as little pay as a company sees fit, in any conditions no matter how dangerous or degrading.

But it also means they can churn out cheap CD players for a tenner that we couldn’t make for £30. It means Primark can sell dresses for £4 or Asda can sell cheap fish.

We all know about it. But we like the cheap dresses and trainers, so we turn a blind eye to the near slavery that makes them possible.

David Cameron (I know, this is the bit that sounds hysterical, but bear with me) wants to make the British workforce more like the Chinese or Indian workforce and the only way to do that is to take away your rights.

He believes you must work longer for less money.

He thinks your boss would make more profit if he didn’t have to pay you holiday pay or sick pay or maternity pay or make sure the factory you work in is safe, or if he didn’t have to pay you a minimum wage or if he could force you to work 14 hour days.

Ideally, Cameron would like you to work for free as then, we might be able to produce cheap fridges too.

The first thing Cameron announced after he didn’t-quite-win the election was that the only way you could get rid of him was if the opposition and members of his own party voted for it. Effectively, he could do anything he wanted, and parliament could not throw him out for 5 years. 

He announced that he would fix the boundaries in elections and reduce the number of MPs, both of which would make it easier for him to win the next election.

Since then, he has :

  • ·         Restricted access to legal aid and so, the ability of the poorest to access justice.
  • ·         Restricted your right to go to an employment tribunal
  • ·         Restricted your right to ask a judge to look at government policies or the actions of your boss
  • ·         Reduced the support we give CABs to help you
  • ·         Removed the need for your boss – or his government – to show that they are fair to black people or disabled people, women or any other group.
  • ·         Offered to buy all of your employment rights – pension, pay, safety – everything, in exchange for a few shares.
  • ·         Forced hundreds of thousands of people to work for no pay – some for an unlimited period.
  • ·         Reduced your pension and raised the age you can retire at.
  • ·         Allowed some bosses to make you work as many hours as they like.
  • ·         Slashed support for disabled people because they are a drain on the economy
  • ·         Made it easier for your boss to sack you without a good reason.
  • ·         Suggested that we get rid of the Human Rights Act
  • ·         Limited the ability of single parents to access the Child Support Agency and force partners to pay for their children
  • ·         Scrapped the “Social Fund” that was the very last safety net between poverty and starvation
  • ·         Overseen a 100% rise in people queuing for emergency food at food banks.
  • ·          Closed half of the refuges for women fleeing domestic violence.
  • ·         Denied profoundly disabled children the right to an independent income
  • ·         Ensured that so many people lose their homes, even Boris Johnson referred to it as “social cleansing”
  • ·         Changed the law so that people relying on social housing can no longer enjoy the security of a home for life and can be evicted if they have more bedrooms than they need.
  • ·         Undermined the House of Lords so that effectively, it cannot amend any laws Cameron might wish to pass.
  • *    Reduced or removed the need for government to consult anyone on changes they make.
  • ·         Restricted your right to appeal any wrong decisions
  • ·         Allowed some councils to force disabled people back into institutions on cost grounds
  • ·         Ignored and broken international law
  • ·         Alienated European leaders – our main export market - and isolated himself through extremism.
  • ·         Created new tax loopholes that will save big businesses tens of billions
  • ·          “Re-defined” poverty so that figures will not show a massive rise.
  • ·         Used propaganda and proven lies to vilify the poor, disabled and those seeking work.
  • ·         Removed the safety net if you become too unwell to do your job.
  • ·         Allowed banks to write off all the losses that got us in this mess against tax. Unlike America, who insisted they pay it back.
  • ·         Closed committees designed to keep check on his policies
  • ·         Reduced the number of civil servants (who’s job it is to design safe laws and policies) to lowest ever levels.
  • ·         Politicised the police force
  • ·         Proposed secret courts
  • ·         Attempted to restrict what you say and do on the internet
  • ·         Continually ignored expert advice
  • ·         Announced it will no longer be compulsory to register to vote (the poorest are the least likely to vote and most likely to vote “ABT” – Anything But Tory)
  • ·         Arrested peaceful protesters and influenced sentencing (supposedly independent)
  • ·         Associated intimately with many now facing trial for criminal activity in the media – Coulson, Brookes, James Murdoch etc

Remember, these are not cuts. These are changes to the law or announcements made by this UK coalition government in just over 2 years. A moment on the lips, a lifetime on the futures of a generation. 

They remove or weaken most of the rights and security we’ve won over the last 100 years.

They undermine your right to a secure home, right to a minimum wage, right to justice, right to vote, right to protest, right to a safe workplace and in a growing number of cases, right to life.

They define how long you can be forced to work for, how much pension you get, your right not to be discriminated against and your right to live free from fear or persecution.

How clever then of David Cameron to re-package these rights as “red tape” and “all this extra tickbox stuff” as “bureaucratic rubbish” .

Thank goodness policy makers will be “free to use their judgement.” Thank goodness we have “smart people in Westminster who consider equality issues while they’re making policy” and never discriminate on any grounds.

 How clever of a press run by oligarchs and billionaires to parody fundamental protection as “’elf and safety gone mad” or the unreasonable demands of whingeing wimps.

Our fathers and grandfathers knew what these rights were. They knew what they meant and gave their lives defending them.

I’m becoming truly frightened that my generation has forgotten

Monday 12 November 2012

People's Review of the WCA

Anticipating the publication of Professor Harrington’s third (and, for him, final) annual review of the Work Capability Assessment, the WeAreSpartacus group have published our own review, from the lived experience of the sick and disabled people going through it. The People's Review of the Work Capability Assessment includes the experiences of more than 70 claimants who have been wrongly assessed, humiliated, badly treated and forced to go to tribunal to secure the benefits to which they are entitled under by law. 

The review also highlights press reports of some of the claimants who have died after being found fit for work or whose suicide has been linked, at least in part, to the stress of a process which is essentially abusive, demeaning and not fit for purpose. In the final section of the review, we examine what has been said about the WCA by the Government, MP's, courts, professional bodies, medical organisations and individual medical professionals. This section includes full references, including replies to Freedom of Information requests, so readers can check the facts for themselves.

In July of this year, investigative journalism from Panorama and Dispatches exposed the suffering experienced by claimants of Employment Support Allowance (which replaces Incapacity Benefit) going through the WCA process. The documentaries also revealed something of what goes on behind the scenes at Atos Healthcare, who undertake the assessments on behalf of the Department for Work and Pensions. 

MP's have raised concerns about the experiences of their constituents; questions have been posed to Ministers; debates have been held in the Commons; the British Medical Association, medical professional bodies and charities, both large and small, have condemned the process; the National Audit Office has highlighted the waste of money from unnecessary appeals; and disabled and sick people have been working continually under extraordinarily difficult circumstances to expose the suffering and hardship they're experiencing. But still the process continues; neither the Department for Work and Pensions nor Atos Healthcare have been held to account.

The People's Review needs to be shared far and wide; it is a comprehensive analysis not only of people's experience, but of the policies and activities behind the scenes which reveal the objective reality of an assessment process which needs a radical overhaul, for the sake of disabled and sick people - and for our country, which cannot afford to fund a broken system which costs much, much more than just money.
(An accessible version is available for download from:
Last but not least, if you have your own story to tell about going through the WCA, please feel free to share your experience in the comments section.

Saturday 10 November 2012

Disability Roulette

Imagine you work for a big national company. They don’t pay very much and you struggle to make ends meet.

One day, the manager comes into the office and announces that the company needs to save money and with immediate effect, they will no longer be paying 20% of their staff.

He says that unfortunately, you are one of the people who will no longer work for money.

Certain that your boss has gone quite mad, you ask -with justifiable outrage – what on earth you will do?? How will you buy food or pay the rent??

He says it’s OK. The company have been very careful to only select workers who have a husband or wife with a job. You shout that your wife only earns £8,000 a year working part time as a cashier! He says that will be enough.

Angrily, you tell him he can stuff the job right up his arse, you’re leaving! No-one can work for free! What he’s doing is against the law. In fact it breaks more laws than Jeremy Hunt at a Murdoch garden party. You will take him to court.

He explains that the government changed the law at midnight. From now on, anyone “migrated” onto a “Nominal salary contract” cannot ever leave their jobs. You must stay with the company, working for free, until you retire in 38 years.  (An aide whispers something in your boss’s ear) “No, wait, scrap that bit, you must stay with the company until you die” says your boss carelessly, as though he just told you the stationary cupboard needs re-stocking.

As though stumbling through a terrible nightmare, you realise there’s nothing for it, you will have to get a second job. Your boss points out clause 8, subsection C :

“No employee on a nominal salary contract (NSC) can attempt any other work for any other company or do any kind of paid work beyond the contractual obligations of the NSC  at all. Any money earned by employees on an NSC will be confiscated and donated to the Treasury in the national interest.  

As you stumble blindly away from him, your boss adds a bizarrely random parting shot “Oh, and we’re confiscating your car and you can never have a bath or shower again.”

Suddenly it feels like you’ve been plunged into a Hollywood movie. The script is so unbelievable, so surreal that you’re sure once people hear what’s going on, they won’t allow it. There’ll be an outcry. Maybe you’re actually dreaming. You phone journalists, MPs, lawyers, you desperately beg your friends to help you, but as though they’ve all been brainwashed overnight, no-one but you and the other people who must work for free see anything wrong with it at all. Or perhaps they do and they’re just glad it isn’t them….

As the months go by you plead for help. Once a week, you must beg for free food in a long dispirited queue, but when you try to tell people, they say you’re “just being dramatic.” You beg someone to help you to keep your home, but they assure you people aren’t losing their homes at all. You smell because you can’t have a bath and you can’t get to work without your car.


Now imagine your “job” is cancer.

A Dr has just told you that you have terminal cancer. It won’t kill you immediately, but you probably only have 5 years or so and there’s nothing you can do. As the tumour grows inside your skull, you will slowly lose your memory, your speech, your ability to move or swallow until you are fed through a tube, breathing through a ventilator and shitting into a bag. 

Suddenly you “work” at staying alive -taking endless medications, keeping appointments with doctors and surgeons and radiologists.

But randomly, this government have announced that 25% of people with a serious long term illness or disability – including terminal cancer, heart failure and transplant patients -  will lose their incomes. All of it. Just like that, overnight.  If they have a partner who earns just £7,500 or more a year, they will lose everything, becoming totally dependent on someone else’s goodwill to survive.

I’m talking about people who can genuinely never work again, and I’m not talking about a few understandable mistakes here and there, I’m talking about a thousand people every WEEK who are being wrongly stripped of their entire incomes in exactly the way the employee in my little story above was, only to have them re-instated after a year, even 18 months of fighting and appeals. Some have died before the appeals could be heard. In fact 72 people a WEEK are dying having been found fit for work by this government.

They can’t get another job so they must accept whatever the government decide to do with their lives. Their totally trapped.

Next year, half a million MORE seriously ill or disabled people will lose their DLA. Again, almost entirely randomly; again, purely to save money – the government admit this quite freely. This benefit was awarded whether you worked or not and was designed to help disabled people with the extra costs of transport and getting washed and dressed. Many disabled people won’t be able to get to work any more and the government have changed the criteria to define “bathing” as washing above the waist with a flannel. (I am not a joking.) If your disability means that you can’t get out of the house or maintain a basic level of personal hygiene you are very unlikely to keep a job or find a new one anyway.

Even if someone who suffers from Parkinson’s, or motor neurone disease or is paralysed tries to earn anything, they simply get it taxed or taken off any replacement benefits at levels close to 100%

And just like the Hollywood movie, no-one wants to listen. It’s so farfetched, so horrible, that you all think it can’t possibly be happening.

“Not here in the UK. Not right in front of our noses. We don’t let our cancer patients and paraplegics die in poverty, here, thank you very much. I mean I know Cameron’s bad, but even he wouldn’t take every penny from people who were actually really disabled. Not 4,000 of them every month? Don’t be silly! ”

So I’ll leave you with a quote from Joseph Goebbels :

"When one lies, one should lie big and stick to it. People will eventually come to believe it."

And one from David Cameron :

"We will always protect the most vulnerable"

Thursday 8 November 2012

"...and then you Win"

This won’t be a short post, but it is a crucially important one.

I have never written about something on this blog that I couldn’t prove to be true. If I didn’t have evidence that I could show you online, I didn’t write about it.

I’ve had many conversations with Labour MPs or peers or journalists or managing directors or trade unions  that I couldn’t share, but each one added to my overall understanding of ESA (Employment Support Allowance)

Today though, I think it’s important that I try to lay out very clearly what I feel I “know” about ESA, WCAs, Atos, the DWP and the current political situation.

I’ve dismissed those I judged to be fools along the way, the way we all do every day as we decide to trust someone or not, to believe something or not. I’ve made my judgements from meeting people, from talking to them. I like to “see the whites of their eyes” when I can. I research people, I try to “know” them and what makes them tick.

I’ve judged evidence and analysis along the way and tried always to get as close to a truth I could prove as possible.

I’ve dug into the history of welfare reform where I could. I’ve tried to find out what was going on with Labour at the time, when were Atos brought in? What was Unum’s involvement, who designed ESA? Which DPOs and charities were involved?

At every stage, with every decision, every   speech, every article, I’ve tried to think of the people who read my blog. I’ve tried to ask what we need to change and why. How to change it. Who are the real enemies? Why? What methods of demanding change are effective?

 Of course, my judgements may not have been yours. I have absolutely no way of actually “knowing” if I was right or wrong, too na├»ve or too cynical, biased or balanced but the following summary is where I feel we are in my heart from everything I’ve read and everyone I’ve met.

There are so many things that so urgently need changing about ESA, forgive me if I forget any here. For every bullet point, the section in italics is my opinion on where we currently stand.         
  •       Medical evidence from own GP or consultant rarely taken into account
One of the most shocking statistics disclosed about WCAs was that DWP decision makers only refer to medical evidence as well as the Atos decisions in 2% of cases. Harrington recommended that medical evidence should always be considered and there has been progress- 8% of decisions are now overturned by DWP decision makers, suggesting they are referring to medical evidence much more. This has not yet been rolled out everywhere, so we might hope to see the figures improve further. However, the ideal solution would be for decisions to be taken by an independent doctor, based on all the evidence available.
  •     Descriptors used to assess fitness to work are far too narrow and not based on real life. They discriminate against those with mental illness, long term chronic illness, learning difficulties and more.
No assessment can ever be fair or functional if the descriptors are wrong. ESA descriptors are so wrong, they need totally fundamental reform. I got the impression that something shifted in the early part of this year. Government suddenly decided to go ahead with a trial of alternative descriptors (you can see them here) that were much fairer and broader and more rooted in a real life test. Though far from perfect, I believe they would give much more realistic results and provide much more opportunity for HCPs to make informed decisions.

The timescales to test these new descriptors is very quick for government. They will be trialled alongside a panel of expert decision makers to see how accurate they are. This process will be run by civil servants and if they are a notable improvement on the current descriptors, government do say that they will be implemented.

We can help make sure the new descriptors are fairly trialled and the results accurately reported by keeping an eye on the trial, communicating with the charities responsible for writing the new descriptors and making sure that this isn’t somehow quietly shelved while we’re not looking. However, if all went well, we might be looking at the introduction of the new descriptors by 2014.
  •          Disability assessment centres are not all accessible to disabled people, often with no parking (!?!)
This is something that Atos has pledged to change as soon as they can. Whether might choose to be sceptical, but they have said on their blog and elsewhere that they are committed to quickly making all centres fully accessible.

We can make sure they do this by writing to them and saying how important it is, urging them not to delay and telling them your own stories of trying to access an inaccessible centre.
  •          The Support group is too narrow and far too difficult to get into.
Support group numbers have been steadily rising. Last year the government had to find an extra £1 billion due to paying more people than they had predicted going into the support group. The figures are still rising and suggest they will continue to rise as the Harrington changes are rolled out. Grayling has said that they are “intensely relaxed” about this rise in Support Group numbers if it means those in genuine need are getting help and certainly, there doesn’t seem to be any evidence of this rise being suppressed or restricted.

Once the latest figures are adjusted to take account of appeal decisions, around 35% will end up in the Support Group, around  42% in the WRAG and 23% fit for work. This is a huge improvement on the shocking days of  new-claim only  ESA stats, where just 6% were going into the support group, 18% into the WRAG and a full 77% of claims not resulting in any award of ESA.

There’s still a long way to go. I would argue that the support group should be bigger than the WRAG and that 23% is too many being found fit for work, but there really has been great improvement.
  •          Sanctions of any kind, but particularly time limiting bad health to one year, are inappropriate for people with serious illnesses or disabilities.
Sanctions and penalties are most beloved by this government despite no evidence at all, anywhere in the world that they work. They have totally refused to listen or compromise at all over this and I can’t see that they will. The public are currently very supportive of sanctions and mostly believe they should actually be tougher.

However, workfare, work providers and some of the reality of sanctions have taken a hit this year thanks to the work of people like Johnny Void and Boycott Workfare, with big companies experiencing a strong public backlash leading them and charities to pull out of workfare and other failing schemes.

More to the point, the way the government has set up the “payment by results” scheme, means that small providers who tend to get good results are going to the wall while less targeted, less successful large companies are unable to hit the targets set. The reality is, most sanctions will either never be used, or will be quietly abandoned as the government realise they either cause too much embarrassment or the scheme collapses totally because none of the providers are getting paid.
  •          Decisions take far too long. Appealing a wrong decision can take well over a year.
This is only getting worse with backlogs growing, targets for re-assessment falling further behind and tribunals taking longer. Soon, as the government realise that it is, in fact, impossible to actually assess 2 million people and keep on assessing them indefinitely. They cannot achieve accurate assessment rates assessing 11,000 people a week. There simply aren’t the HCPs to do the job.

Assessment rates need to fall by around half and government must accept that the whole process will take longer then they predicted. When assessment rates DO fall, the appeal rate also falls drastically as shown in Kettering who have implemented all of the Harrington changes enthusiastically. Getting the decision right first time, by taking the necessary time with each claimant saves the taxpayer millions and the person being assessed trauma and unnecessary waits for tribunals etc.

There is strong anecdotal evidence that Atos and the DWP are now pre-assessing many as unable to work without calling them for assessment. This is exactly what we always said they would have to do. It is how the original IB system worked and though the government are clinging on to the rhetoric, they are realising we were right all along and there really IS no point in assessing people who will never get better and who clearly will never work. This is a big win, but you’re unlikely to hear about it.

·         Healthcare professionals (HCPs) used by Atos to assess disability do not have to be doctors and do not need to have any specialism or prior understanding of the condition the claimant suffers from to make a decision.

Atos have pledged “mental health champions”, up and down the country, claiming that they will make the assessments fairer for those suffering from mental illness. This is welcome, but unless the assessor has some knowledge of the conditions they are assessing they cannot possibly make an accurate decision. Atos might consider other teams of expert assessor for other conditions. Though it might mean claimants travelling further to be assessed, if specialist teams were more accurate it would be a small price to pay. All HCPs should have a working knowledge of either general medicine or the speciality of the person they are assessing.
  •         Reports written by HCPs are inaccurate; often bearing no resemblance to what the claimant reports was actually said.
This still seems to be shockingly common. The DWP have said in principle that all assessments can be recorded, but in reality are blocking the process. Until someone being assessed for ESA is afforded the same basic rights as a criminal, and assessments are recorded, claimants cannot make sure this doesn’t happen.

As both Atos and the DWP have said that assessments can be recorded and have pledged to get working recording machines into assessment centres, we can make sure people get accurate HCP reports by keeping the pressure on the DWP to provide these machines in every centre. This is one area that I know is under great pressure legally too. Having the law on our side can only help.
  •          Questions are misleading, seemingly designed to “catch people out”
A longer assessment using the improved descriptors, should make this less likely, but there is a culture of suspicion between state and claimant that must be talked from the roots up. All the time ESA is only designed to catch the cheats, it will never serve those in genuine need.
  •         Mail containing highly personal and sensitive information on forms is opened and sorted by a third party.          
Mails used to be opened by the Royal Mail, sorted and only then sent on to Atos. Once the DWP finally accepted that the practise was commonplace, they have now pledged to stop it. We can make sure they do by keeping the pressure on.
  •          Correspondence sent to the claimant is threatening and frightening.
This is one area where Atos have seemed very keen to make improvements. They have redesigned their website to make information more easily available, less frightening and more sensitive. They now have a patient charter and say that they will work hard to make the whole claimant experience more customer focussed and compassionate.

They would like people to advise them on how to do that, what we would like to change etc. Of course, we can refuse to make things better right at the point where Atos are asking how to, but that feels a bit like a four year old having a tantrum. We’re grown ups and we can’t change things if we don’t explain what needs to change and why.
  •         Language used by politicians and press to discuss those claiming ESA is derogatory and demeaning. Scroungers, skivers, feckless, festering – we are called all these things. Journalism is often lazy and full of inaccuracies.
For some time now, we haven’t been unheard. Just two years ago, no-one was writing about ESA at all, other than to remind the public that we were all scroungers who could be working. Now, the Guardian, the Mirror, the Independent, Private eye, Political Scrapbook, Left wing blogs and even the Spectator are running regular stories about the failures of ESA and the WCA. Channel  4 have run some fantastic sections on the failures of ESA and even the Daily Mail have allowed blogs about ESA written by the indomitable Sonia Poulton.

Slowly but surely, things are changing. Bit by bit we are [persuading those that matter to persuade the public that we are right and the government are wrong.

It is frustratingly slow. The public have to read things many times over before they accept them and we still have a long way to go. But things are totally different now to two years ago and momentum is building in our favour.
  •          ESA had cross party support. There was almost total political consensus that it was good policy.
From my own point of view, this is what I most wanted to change and the thing I’ve worked hardest on. All the time we still have a Labour party blind to the suffering of sick and disabled people, they are not a Labour party. It has been achingly slow with disappointments and faux-pas at every stage. It pains me that I have had to drag Labour to every concession kicking and screaming, that some in the party still think ESA is right. It hurts me to remember some of the judgemental speeches and thoughtless, unfounded coalition policies they originally supported.

But as I wrote here Labour have made real steps in the past year to put the mistakes of ESA behind them. They are now saying they are listening and travelling the country discussing sickness and disability policy with those actually affected. They have laid out a set of “rights” they believe sick and disabled people should be able to rely on and they have admitted ESA is a mess and isn’t working . Byrne’s Beveridge 2 speech was a turning point in which Labour started to dare to say the word disability again. I DO believe Labour are listening. They realise that we face very grave threats, that we are not just the usual suspects making a fuss. It’s up to us to tell them what we need. We can’t sit at our keyboards complaining then refuse to say what we want.

The EDM raised by John McDonnell was signed by 114 MPs and became the 3rd most signed EDM Every day a new Labour MP or even a Lib Dem or Conservative join the growing chorus of MPs opposed to WCAs. Again, it’s slow and it’s frustrating, but we’re getting there.

It is also now Lib Dem policy to oppose WCAs despite their actions. This might not help now, but could come in very handy in the event of a future Lib/Lab coalition,

Once the political consensus is broken, it gets much harder for the government to get away with leaving ESA a shambles.

Jon Cruddas, the head of Labour’s policy review, has promised to make sure anything we send to Liam Byrne and Anne MacGuire goes to the very heart of discussions over future policy. I believe him because he’s a good guy who’s written articles about sickness and disability that sound just like mine. He is a politician who really understands our issues.

I honestly believe we have a chance if we just make sure we tell Labour what they have to do and keep the pressure on them to do it.

But we have to tell them.
  •          It’s pointless expensive and unnecessarily distressing to constantly re-assess those with disabilities so severe and profound that they will never work.
(Dealt with under delays and appeals above)
  •          The help & support politicians say people with serious illnesses and disabilities will get to find work is totally inappropriate and ineffective. It conflates disability benefits with JSA (Jobseekers Allowance) Most people who lose ESA have not found work.
As I’ve argued here and here it is no good sorting out all of the problems above if there is no work sick and disabled people can actually get or do. The work provision is woefully inadequate, the system is not going to make work pay for us and we need to totally re-design the help and support government provide. If you can take part, please leave your comments below the articles and let politicians know what you need to work and what that work should be
  •          The public were unaware of all these faults and generally thought ESA was a good policy.
Sadly, this is the area where we still have the most work to do. Most people still don’t know what’s happening and disability is not an issue they think about often or that interests them much. If we are sitting around waiting for people to wake up and say “Oh, this is terrible, we have to stop it!” they aren’t going to do that any time soon. Think how long it took for Tom Watson to expose phone hacking?  It took years to spill over into genuine public outrage. There isn’t going to be a revolution.
All we can do is chip away, every day, telling more and more people, getting them to tell even more people. Slowly but surely, opinion will change.

If you look at all I’ve written above, we’re well on the way to winning most of the points above. If we haven’t won, we’re at least at the place where we’ve won a seat around the table. We’ve made massive progress since 2010 and the truth is that with new descriptors, accessible centres staffed by respectful courteous experienced staff, more paper assessments taking place, higher support group and WRAG numbers a commitment from Labour to make rights a reality for disabled people and to really listen to what we need we have all the ingredients of success. With Atos claiming that they are willing to improve assessments  implement the Harrington changes and allow assessments to be recorded we’ve come a huge way in two years.

Of course we still have a long way to go, of course it isn’t enough but I think it shows for itself how successful a strategy of engagement and lobbying can be. We would have achieved none of this without sustained and often boring small changes, bit by bit, day by day, chipping away at everything that is warped and wrong with ESA. The government become more and more isolated by the day as the BMA, every main charity, Atos, the press and the opposition parties edge further and further away from supporting ESA.
This might not be the way everyone would do business but I don’t care about saving face or an ultimate glorious win that may never come.

I want to ACTUALLY win and that means compromise, boring detail, hard work and disappointments.
The proof of the pudding will be ESA in 2015. Tragically that will be too late for many, but better to win slowly but surely than to never win at all. 

Tuesday 6 November 2012

ESA Reaches a Tipping Point

Today, pretty much as I type, the Government will release the first significant figures for the transfer of claimants from incapacity benefit to the new Employment Support Allowance (or ESA, via the feared and despised Atos WCA)

Finally, we will get to see how many people previously claiming Incapacity Benefit are being awarded the new benefit, how many are being awarded it for one year only, how many are told they are immediately fit for work and how many can look forward to the mythical  “support” that doesn’t actually exist for those told they need it to find work.

But it will show lots of other things too.

We have a curious – and I would guess fairly unique - situation here with welfare policy. Sick and disabled people have found a voice on social media that often went unheard in the past. At this very moment in time, we, the public, have access to information that we have never had access to before.

With the introduction of the Data protection and Freedom of Information acts and their perfect marriage to the information superhighway, sick and disabled people can campaign online with immediate access to political information via Hansard, the website and other sources.

They can share that information with a network of millions in seconds via Facebook, Twitter and email.

They can analyse endless, technical reports and data in hours, overnight if need be - by breaking it down for many people to do in chunks. Any government still hoping they can sneak information out, cook the books, distort results or mislead the public can only be totally unaware of the invention of computers and what actual human people use them for.

I know of at least 8 groups or analysts with hunches on what today’s figures will show, waiting to pounce as soon as the report is released and prove or disprove their theories. Almost all would be pretty much terminal for ESA as it exists. Did I mention these are very clever people indeed? The odds of all 8 hunches being wrong are negligible.

The truth is the game is up. Oh, the name might limp on – you know how politicians love to save face – but there are only two ways for ESA to go : It either has to improve drastically, beyond all recognition, in partnership with sick and disabled people or current protests will spill over into a terrible crisis for Britain.

Ask yourselves what it takes for people like me – an ordinary Mum and wife who happens to have a serious long term illness – to suddenly start writing here, trying desperately to warn you all that something terrible is happening. When 13 year old boys write to the Right Honourable Minister accusing them of killing their Dad; when vulnerable people feel they must do something as extreme as going on hunger strike, a policy is simply no longer sustainable. Oh, it might limp on for a while, but every time someone dies just days after being found “fit for work” by Atos, every new set of damning statistics, every announcement that “work providers” are actually not providing work gets more and more coverage and more and more embarrassing for politicians.

Today’s figures should show that Atos are not close to conducting the number of assessments the DWP predicted. Files are backed up for months, Atos have been trying to recruit more assessors – and failing – for months. Assessments either a) take longer than the DWP insist on or b) cannot be accurate. If today’s figures don’t show that Atos are way behind schedule, then the books have been cooked. This is not debatable or theoretical. Despite Iain Duncan-Smith’s endless claims that everyone will face an assessment under ESA, we have reams of proof that this is not, in fact, the case. The only way to clear the backlog would be to simply approve a large number of files based on the application form and the evidence provided by the claimant alone – just as they always had to.

For what it’s worth, I predict a significant increase in Support Group numbers, but the reasons for my hunch are classified.  

Harrington will also release his Year 3 review in just a week or two and, again, it either has to call for very significant changes to the WCA or be discredited totally. Another fudge, any attempt to claim it will all just sort itself out, everything’s fine honest, blah, blah, blah will be the final straw. Harrington will be totally discredited and any campaigners who still have even the tiniest respect for trying to change this welfare car crash politically will dissolve.

I should not have to warn government that this is something they should avoid happening at all costs. Any group who tries to engage with the political system and finds that archaic laws are invoked to deny all recommendations from a second chamber, information is hidden and falsified, statistics are twisted and distorted or released unapproved, the press is co-opted with politicised departmental press releases and the public are made to hate them through a programme of propaganda find, they become a civil rights movement.
I am frightened by the desperation I see growing daily amongst sick and disabled people. I am frightened that people are taking their own lives and going on hunger strike. I am frightened by what form a civil rights movement takes when a group are so systematically disenfranchised by the actions of a sitting government. I am frightened by the sense amongst the people I write for, that the time for talking is passing. Maybe that it has passed.

Sometimes, people describe me as a disability campaigner. I’ve often tried to explain that I don’t see it that way. I’m a writer. I’m meant to reflect what I see, not distort it. I’m meant to dig down into the reasons for it, try to understand what motivates it.

There are only two ways for this to go. Either :

The government announces a pause to the IB to ESA transfer and a total re-design of any future out of work sickness benefit and the process of assessing a need for it


The entire process will collapse, grinding to a painful halt under the sheer weight of backlogs, appeals, bad press and public outcry. Thousands more mums and sisters and sons will die un-necessarily, all for the refusal of politicians to accept expert advice and ESA will go down in history as the most shocking human rights abuse of people with disabilities the UK has ever witnessed.

Because that’s what civil rights movements are for. 

Monday 5 November 2012

Savile, Hitler & Welfare Reform. Some things are just too Terrible to Believe

Generalisations are always tricky, (Do you see what I did there?) but I think I can say fairly safely, that there is one question almost everyone in the western world has asked :

How did Hitler happen?

How did the German people allow Hitler to round up millions of jews and homosexuals and disabled people, cram them into cattle trucks and gas them to death? How did that happen? Why did tens of millions of presumably good, honest, compassionate German people turn a blind eye to one of the greatest atrocities of all time? It was going on before their very eyes!  Bakers and lawyers and neighbours “disappearing” never to return, the rhetoric of hate that the government used to justify psychopathic murder – how did it happen? In Europe?  Just 70 years ago?

When I asked myself the question, I decided some things are too terrible to believe.

I mean, imagine, right now, I told you that I had proof - absolute solid proof - that aliens were going to destroy the earth around teatime next Tuesday. You wouldn’t believe me would you? Your mind would immediately cast me into the “raving conspiracist” category of amusing fools. Your answer would almost certainly be “What this Tuesday? At teatime? Don’t be so ridiculous.

We saw the same thing happen recently with Jimmy Savile. How did he get away with the most disgusting and calculating abuse, in plain sight, for decades? Why did no-one say anything? Why didn’t they do something? Why were the victims almost unanimously dismissed?

Again, some things are too terrible to believe.

It was Jim! Jim’ll fix it Jim!! The Jim who ran countless marathons for charity, who raised millions for good causes. Children my age literally deified him and would have done anything to get on Jim’ll Fix It. Rumours that Savile was a paedophile did the rounds for years. We all just sort of knew and simply couldn’t bring ourselves to go there.

For the last two years, I’ve seen for myself that it’s true.

For two years, I’ve been saying very clearly, here on this blog that sick and disabled people face a very grave threat. Half a million people with disabilities will lose the support they rely on to leave their homes or to get them out of bed and dressed. A million more will find themselves forced to the jobcentre with cancer or Parkinson’s or heart failure. People are dying as a direct result of the policies this government have introduced. 

Right here, in Britain, right in front of your eyes, this government is lying to you. They are not "protecting the vulnerable", they are not “making sure support goes to those who need it most”. What's more, they are making sure you turn a blind eye by making you hate us. You don’t hear me over the screech of “lazy feckless scrounger” propaganda when I say people will become bedbound or housebound; starving without the means to buy food; cold but unable to heat their homes.

When I tell you that we have a government so calculating that far from protecting the vulnerable - as they endlessly claim, - they are in fact attacking the one group of people they thought could never fight back. You are witnessing the biggest attack on the well-being and security of people with genuine and profound disabilities this country has ever seen. It’s happening, right now, here in Britain, right in front of your very eyes. Like every bully, they have picked out the weakest, who's voices are rarely heard.

But you don’t believe me yet – some things are too terrible to believe.

So when a 13 year old boy is writing to a government minister, here in the UK, to tell him very clearly, that his father is dead as a direct result of that minister’s policies, something is very wrong indeed. Kieran McArdle, 13, wrote this heart-breaking letter to Iain Duncan Smith last week telling him what so many thousands of others have tried to tell him but failed. That his ill-conceived, ignorant welfare “reforms” are killing people.

When someone with a disability embarks on a hunger strike so that you will listen to what they are trying to tell you, something is very wrong indeed. 

How far will you let this go? What will it take for you to listen? What are you prepared to "turn a blind eye" to?

My father's generation hoped we would never need to ask these questions again.