Monday 16 December 2013

Open Letter to David Cameron

I can hardly bear it any more. Day after day after day. Terrible stories of suffering, despair and suicide.

I'm know you don't believe it. I know what you're told. "It's getting better, we're taking action, we're improving the process, these people don't try hard enough, they're not really sick enough."

People say I shouldn't beg. But I'm not proud. If getting down on my knees and begging you would make a difference, I'd do it gladly. I promise you now, you'll be remembered for this. If you're sitting at home right now, thinking about your legacy, I promise you it will be this. It will be that you turned away from the pain and suffering before your very eyes. I'll make sure of it if it takes me 20 years.

It will be that you allowed your Department for Work and Pensions to lie and cheat and mislead whilst people - millions of people - suffered.

I know, I don't usually click on video links either. But you found time to watch Strictly Come Dancing,you said so at the Downing St charity reception. And we know you loved Fruit Ninja. And you have time to take countless holidays.

So even if you're convinced I'm wrong, absolutely certain I'm just a trouble making leftie, please, I'll beg you, I'm not proud, find ten minutes - just ten minutes to watch

This film. 

Work Capability Assessments have been found in law to discriminate against people with mental health conditions. Your government appealed but the appeal was overturned. Not only are you on the wrong side of the argument, you're on the wrong side of the law.

You have to stop this. You can pause the migration of Incapacity Benefit claimants until the process can be made safe. YOU can do it. Today if you chose to. You could stop this dreadful social crisis unravelling before our eyes.

And I'm begging you. For what it's worth.

Friday 13 December 2013


Yesterday, Paul Litchfield finally released his Year 4 report into Work Capability Assessments.

There are some good recommendations it it.
  • He suggests setting minimum times for reassessment after a successful appeal (6 months)
  • He concludes that the process needs to be simpler and take less time
  • He finds that both those attempting to claim and the public have little faith in the system. He suggests people should be treated with much more dignity and compassion
There are many other recommendations, many of which echo calls campaigners have been making for some time. 

However, do these recommendations actually matter? Professor Malcolm Harrington, Litchfiled's predecessor, completed 3 previous reviews, but the some of us from the Spartacus network wondered just how many of his original 25 recommendations had actually been rolled out successfully. 

In Litchfield's report he says 

"Of Professor Harrington's 49 recommendations, the Department accepted 35 in 

full and 10 more in principle. Of those accepted in full, 29 have been fully 
implemented, 3 have been partially implemented and 3 are in progress. Of those 
accepted in principle, 5 appear to have been fully implemented, 2 partially 
implemented and 3 are in progress. 

We disagree with his analysis completely. We chose to analyse the first 25 recommendations from the Year 1 Review as we felt that any effects or progress would have had time to be implemented. Of those 25 recommendations, we found that nearly 2 thirds had not been implemented successfully or completely. 

Independent reviews are supposed to be just that. It's hard to understand how our findings can be so very different to those of the Mr Litchfield. 

As ever, we need to make our own news, but I know we can. The Harrington article I posted earlier is already the 4th most read article online today because of YOUR support, YOUR RT's and shares on Facebook and because YOU let people know about it. 

We can show that we are our own media if we all pull together. 

Breaking News : Government Reviewer Opposed Rollout of ESA

In 2008, Labour introduced a new out of work sickness benefit, Employment and Support Allowance, to replace the old Incapacity Benefit.

The new system of application and assessments was much tougher, and politicians originally hoped that up to a million people could be moved from the benefit.

However, by 2010, it was clear there were significant flaws in the process. People with mental health and fluctuating conditions were not being fairly treated and successful appeals against “fit for work” decisions soared to 40%.

Professor Harrington was asked to review the new benefit and make recommendations for improving it. As the election took place in 2010, crucially, only new claimants were being assessed. ESA was yet to be rolled out to the more complicated, and often longer term, Incapacity Benefit claimants, though trials were underway in Burnley and Aberdeen.

Most people claim out of work sickness benefits for short periods – perhaps to get through a sports injury, accident or one off surgery – and stop their claims within 2 years. However, this will always leave a few people with serious, life limiting conditions who will need to claim the benefit for longer periods. Over the years, those claims build up, increasing the proportion who need long term support.

When the coalition came to power in May 2010, they immediately announced that they would go ahead and start to reassess those already claiming Incapacity Benefit.

I could never understand this decision. Why would you take a failing benefit and roll it out to almost 2 million of the most vulnerable claimants? Not only that, but at first, just 25,000 people per month were being assessed, but the government constantly increased and increased the numbers until today, nearly 130,000 assessments are carried out every month.

Why? Why would you rush this group through failing assessments, ever faster, when backlogs kept on increasing, tribunals were overturning 40% of decisions that went to appeal and even legally, courts were starting to judge that the test discriminates against certain groups?

Unless of course you don’t want the tests to be fair. If your aim is to remove a million people from the benefit, perhaps it suits you to make sure that as many of those existing claimants don’t face a fair test? Since 2010, the government have repeatedly delayed improvements to ESA. Out of 25 recommendations made by Professor Harrington in his Yr1 Review, almost two thirds have not been fully and successfully implemented. An “Evidence Based Review” using new descriptors designed by mental health charities and those charities representing people with fluctuating conditions was initially rejected, then taken on, but although results were due in June, still, tests use the old descriptors to decide who qualifies for support. *

The government repeatedly claimed that Professor Harrington had supported the national rollout of incapacity benefit claimants

“Professor Harrington went away and made his recommendations to us, which we accepted in full and have implemented. He told me, “I believe the system is in sufficient shape for you to proceed with incapacity benefit reassessment.” We set ourselves a goal to put his recommendations in place, improve the quality of the process and address many of the issues to which hon. Members have referred today by the end of last May, when the assessments in the incapacity benefit reassessment were to start alongside the existing process of assessing ESA new claimants. We did that, and we started."

1 Feb 2012 : Column 289WH Hansard Chris Grayling

However, Harrington was clearly an intelligent man who had made thoughtful and intelligent suggestions for improving the assessments. I could never understand why he agreed to put the most vulnerable claimants through a failing test.

So I decided to ask him.

It took me a while to track down his email address, but after pulling lots of strings, I was able to ask him outright.

This was Professor Harrington’s reply :

“To your question:

I NEVER---repeat--NEVER agreed to the IB migration. I would have preferred that it be delayed but by the time I said that, the political die had been cast.

I then said that i would review progress of that during my reviews.

The decision was political .

I could not influence it.



I’d say it was fairly clear, wouldn’t you?

Ian Duncan-Smith and others took the decision to push nearly 2 million people through a failing test as quickly as they could. Why? Was it so that they could remove as many people as possible from the benefit whether they needed it or not? Surely any failures to improve the test as recommended by Harrington, charities and campaigners couldn’t have been deliberate? Delaying improvements until the IB cohort had been rushed through, the cohort this government and others are convinced are simply “scroungers” and “skivers”?

Instead, as we now see, delays have increased, successful appeals have risen, lives have been lost to the sheer inaccuracy and flawed design of the assessments and the human suffering is now clear for all to see.

To have taken the decision through incompetence is bad enough, but if it was taken deliberately and cynically, I can only hope the responsible ministers will be held to account. Over 200,000 incorrect decisions have since been overturned in law and appeals are taking up to a year to be heard in some areas.

When David Cameron came to power he said :

"The test of a good society is how do you protect the poorest, the most vulnerable, the elderly, the frail.

That's important in good times, it's even more important in difficult times. People need to know that if they have me as their Prime Minister and they have a Conservative government, it will be that sort of Prime Minister

Iain Duncan-Smith said :

“I say to those watching today and who are genuinely sick, disabled or are retired. You have nothing to fear.

This government and this party don’t regard caring for the needy as a burden. It is a proud duty to provide financial security to the most vulnerable members of our society and this will not change. This is our contract with the most vulnerable.”

I look forward to them explaining what made them change their minds.

Today, we must be our own media. Please RT on twitter, share on Facebook and help me to make sure that as many people as possible see this news. 

*Coincidentally, the evidence based review was released yesterday, as I was writing this article.

Update; Patrick Butler at the Guardian speaks to Harrington - who strengthens and confirms the story above. It is now up to the DWP and Chris Grayling to explain the contradiction between Harrington's statements and what Grayling told parliament.

Monday 9 December 2013

Urgent Request from Scope

Something really important has come up.

It’s about social care, the vital support many disabled people need to get up, dressed, out of the house and live independently. Angela explains well how important it is: "I'm 28, I'm disabled but I want to enjoy life the way any other young woman can. Thanks to social care I have two volunteer jobs, I can go shopping, see my friends."

But more than 100,000 disabled people like Angela could be denied care altogether. Will you speak out right now for social care?

Here’s why it’s urgent.

MPs are about to debate the Care Bill, a once-in-a-generation law that will decide the future of social care. They are meant to represent us, so will you ask your MP to speak out about disabled people being denied care?

Now is a big chance.

All you need to do is tell us why you feel it’s important everyone who needs care can get it. As simple as that. We’ll deliver your message to your MP on a big speech bubble so they hear your voice.

If you get care, know someone who does or simply believe that everyone should have freedom and dignity – please speak out about social care.

Time is running out, so please fill out your speech bubble and submit it by this Monday 9 December. We’ll print them and make sure they get to MPs in time for the Care Bill debate on 16 December.

Thank you so much

Thursday 5 December 2013

"Ian Duncan Smith - In Deep sh....ambles" - YOU CAN HELP!

Here are the DWP headlines that came to my attention yesterday. IN ONE DAY.

"Suppressed report: welfare reform link to Homelessness and food bank use" Patrick Butler, Guardian

Doube "Cover Up" Over Work Choice Allegations John Pring

Disabled Worcester Mum says Bedroom Tax Move has left her £900 out of Pocket James Connell, Worcester News

Unemployed Gravesend man hanged himself after sickness benefits were cut Khaleeda Rahman, News Shopper

One day.

Today we hear that despite insisting to the Work and Pension Committee, the National Audit Office and everyone in between, Iain Duncan Smith had to finally admit today that it's likely his flagship benefit reform.  Universal Credit will NOT be fully rolled out by 2017. 700,000 people could still be waiting to be transferred. He tried to sneak it out just before the Autumn Statment, but it didn't work. Andrew Sparrow tweeted "IDS wins a special Jo Moore burying bad news award"

As I posted a few days ago, WOW Petition achieved the 100,000 signatures required to trigger a parliamentary debate on the issues it raises.  As you can see above, they are legion.

Every citizen with any compassion can only read the stories above and demand that parliament - on all sides of the house - are held to account to explain themselves. A genuine debate, not a partisan bun fight.

So please, even if you never have before, write to your MP and ask them to call for, and attend, a debate. You can email them here in just a few moments. It doesn't have to be long or clever. It just has to ask for a debate and say that it matters to you.

My instinct is the government don't want this debate at all. And though WOW worked tirelessly for a year to get the required signatures, the government don't HAVE to grant one.

You can make sure they must.

Please contact your MP here

The Autumn Statement in 2 Sentences

There are only two things that really need to be said about Osborne's Autumn Statement.

By 2015, the deficit will still be £79 Billion. This from the chancellor - and party - that entirely nearly won an election by promising to "eliminate the deficit".

Debt, which the chancellor promised would be falling by the election, will be £198 Billion more than Osborne planned in 2010. It will be 80% of GDP by the election. It was 52% when Osborne took over

On absolutely every measure that is an abject failure that's caused untold suffering up and down the country.

The Red Cross are distributing food in the UK, the cost of living has risen while wages have consistently fallen.

Many things surprised and dismay me about politics, but the way we've ignored the total and utter failure of Conservatives through the ages to control debt and deficits whilst claiming Labour can't run an economy when ALL the evidence says exactly the opposite over decades totally mystifies me. 

**If any Conservatives take exception to this, spend a few minutes here :

Monday 2 December 2013

Just watch this. Please

You might not have read my blog before. Or you might have read it a few times, sympathised, but found it all too sad and shocking to keep up with. You might have stopped clicking on the links on a busy Monday morning, or a perfect, crisp, cold winter's Sunday. You might think you get the general gist and don't want constant reminders of how unpleasant politics can be.

But today, just watch this short film. I promise, you won't have seen anything like it.

The Independent Living Fund (ILF) was a fund set up to help only those with the most profound disabilities, requiring almost constant care, to stay in their own homes for as long as they possibly can. It helped just 20,000 people with the most intense care needs at an average of around £300 per month, saving councils up and down the country much, much more in residential care.

But one of the first decisions taken by this government was to scrap the fund. Even if you believe passionately in Iain Duncan-Smith and David Cameron's welfare "reforms", you probably believe that the "most vulnerable" are excluded, as they've assured you all along that they would be. You almost certainly believe that "support is being targeted at those that need it most". Because that's what you've been told, in a loop, since 2010.

Well, though sick and disabled people hate the word, few are more "vulnerable" than those who had help from the ILF. It has been closed to new applicants since 2010 and will be scrapped for existing users from 2015.

To really understand what I've been trying to tell you since 2010, please, just watch the film. It's just 15 minutes long and says more than I ever could in a million words.

If it touches you, as it did me, can I ask you a favour? Send it to just 2 people you love. And ask them to send it to two people they love. Ask them to watch it for you, as an early Xmas present and to pass it on. Not the usual twitter and facebook links, preaching to the already converted, but to someone you know won't be aware of the extraordinary battle sick and disabled people are fighting, up and down the country.

I know that the British public care. I know they would not want this. Please, help me tell them?

Saturday 30 November 2013


Thrilled to be able to say that WOW Petition just hit the 100K signature mark to qualify for a  debate in parliament.

It was in the Daily Mirror just moments later. I'll let them tell you......

100,000 sign War On Welfare petition asking for assessment of cuts to the sick and disabled

30 Nov 2013 20:35

The achievement means the issue must be considered for debate in the House of Commons

A hundred thousand people have signed a petition calling on the Department for Work and Pensions to look again at all cuts affecting sick and disabled people.

Led by comedian and campaigner Fracesca Martinez, the War On Welfare or WOW e-petition asks the government to carry out a Cumulative Impact Assessment looking at the overall effect of cuts to sick and disabled people, as well and their families and carers.

It also asks for MPs to be given a free vote on the repeal of the Welfare Reform Act.

Campaigners are demanding an end to the Work Capability Assessment, and an independent inquiry into issues including charges for care homes, ATOS, and the closure of Remploy factories.

They also want to put a stop to "forced work under threat of sanctions for people on disability benefits".

The petition has achieved its target of 100,000 signatures with 12 days to spare before it closed.

Celebrities including Stephen Fry, Russell Brand, Yoko Ono and Bianco Jagger have endorsed the campaign.

This means is now must be considered for a debate in the House of Commons.......

You can read the full article here

Please continue to sign Wow petition here :

Friday 29 November 2013

Mandatory Reconsideration - A Little Hope?

Apologies, someone emailed this news report and I don't know who to credit it to, but felt the information was worth sharing with you all.

It's not much, but at least a little "softening" from Esther McVey

Straightforward ESA mandatory reconsiderations expected to take ‘around 14 days’, says Esther McVey

Employment Minister also confirms that claim for JSA during reconsideration period will have no bearing on outcome

26 November, 2013

The DWP would expect a straightforward employment and support (ESA) mandatory reconsideration to take 'around 14 days', according to Employment Minister Esther McVey.

Responding to questions on mandatory reconsideration of ESA decisions in parliament yesterday, Ms McVey said -

'If no further information is needed and the case is straightforward, the mandatory reconsideration process for employment and support allowance could be completed relatively quickly. We would usually expect this to take around 14 days, but it could take longer. For example, if further information is needed, the law states that DWP have to give people one month to provide it and this may be extended further at the decision maker's discretion, so cases like this may take longer.'

In addition, in response to a question on whether a claim for jobseeker's allowance (JSA) during the mandatory reconsideration period would prejudice or influence its outcome, Ms McVey said -

'The DWP decision maker’s decision at the mandatory reconsideration stage for employment and support allowance is intended to be an independent step in the process, therefore, whether the claimant has claimed jobseeker's allowance or not in the intervening period, this will have no bearing on the mandatory reconsideration decision. Work Capability Assessment decisions are binding—a jobseeker's allowance decision maker cannot decide that a claimant is too ill to work if this contradicts the ESA decision maker's decision. However, the claimant must agree to the jobseeker's agreement/claimant commitment to be eligible.'

Ms McVey's written answers are available from Hansard.

Thursday 28 November 2013

WOW Petition - Nearly there

On 12th December last year, sick and disabled activists came together online to access democracy. They launched the WOW petition in order that sick and disabled people might be heard.

The DWP refuse to engage with us or the charities that represent many of our conditions.

They treat parliamentary questions with contempt and regularly lie in their answers. This is supposed to be against parliamentary rules. But no-one stops them or reprimands them .

They refuse to come on mainstream media programmes any longer to debate with us and when they are asked, they try to tell the particular show how they must report the issues or refuse to appear. This is supposed to be part of our democratic process, but no-one makes them engage.

They treat opposition day debates like partisan circuses, shaming their office and those who fight so hard to be heard.

They ignore consultations and Lords amendments that tell them their reforms are bound to fail.

They change the law retrospectively seemingly at will when the courts find that they have acted unlawfully. Or simply ignore the court's decisions.

Perhaps if their "reforms" were achieving their stated aims, no-one would care, but Universal credit is in crisis, PIP (reform of disability benefits) has been repeatedly delayed, ESA has all but ground to a halt with backlogs, Atos are under audit and pulling out of the old disability assessments, the bedroom tax gets more horrific by the day.

600,000 people will lose disability support. Up to a million will be told they must work with cancer, kidney failure, Parkinson's and any other condition you can imagine. 660,000 people are affected by the bedroom tax, 700,000 lose everything as sickness benefits are limited to just one year in many cases. Nearly a million people were sanctioned (lost benefits) through the Work Programme this year and tax credits for disabled children have been halved.

Many of those cuts will hit the same people over and over again. 

Today, WOW petition stands at 96,268 signatures with just 14 days to go. Just 3,732 signatures short of the 100,000 required to force our own debate in parliament. The government do not have to accept the will of the people, but they look even more shockingly arrogant if they don't

Please, if you haven't already, sign the petition here
If you think you've already signed, please check. 
If you signed, also check you verified the email sent automatically to your inbox - your signature won't count until yu click on the link they send. 

Democracy is only as good as the structures and conventions that hold it in place. For sick and disabled people, those structures and conventions lie in tatters. 

Help us to be heard. Stand with us. Sign WOW Petition

Sunday 24 November 2013

Open letter to Andrew Marr

Dear Andrew Marr

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

All you had to do was concentrate on getting better.

I thank God that you are and for the care and support you had to get there. But perhaps, now and then, you could read the odd article about how it might have been very, very different. Stroke survivors struggle to make ends meet on ESA Derbyshire stroke victim wins victory in benefits protest. .... "following a severe stroke, Jan Morgan was shocked at how she was treated by the benefits system....

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

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

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

Please with just a few days to go, would you all sign the WOW petition and share it amongst your friends and family

Monday 18 November 2013

IDS to face tough questions in Parliament TODAY!

Did you ever read the "Where's Wally" picture books as a child?

You know, the ones where you had to search for a tiny, tiny wee cartoon man in enormous crowds?

Well lately, we have been searching for Iain Duncan-Smith high and low, but he's been nowhere to be seen.

- He lost a court case on "workfare" : Nothing.
- The DWP announce major delays to their flagship disability welfare reform (PIP) : Nothing.
- It's revealed that many more millions have been wasted on Universal Credit IT that doesn't work : Nothing. - A debate in parliament directly involving his department : Still nothing.

Much musing has taken place amongst geeky people like me and the hashtag #WheresIDS has been bobbling about on twitter for months now. Jayne Linney has done tremendous work to find out why, for instance, (via the Freedom of Information system) he STILL hasn't appeared before the Work and Pensions committee.

Thanks to the eagle-eyed @imthenicenurse it would appear that he's s now prepared to appear before parliament today at 2.30pm.

The questions MPs have tabled to ask are excellent and I can't wait for IDS to answer them!

Something is afoot. Possibly several somethings. I can feel it in my twitchy instincts. Have Conservative central office finally realised that IDS is a liability, not an asset? Did they want to reshuffle him, but he refused to go? Are they keeping him out of public view because his image has become so toxic?

Who knows, but either way, he's very quiet, even for a "quiet man".

You can watch the session in parliament this afternoon by clicking HERE

Buy popcorn.

Well done to Jayne and all the others who've kept up the pressure. Anyone who wants to tweet could use #IDSontheSpot

If you'll be live tweeting it, do send me a quick tweet or email to let me know, so that I can direct people who are interested to your timelines. Also, please spread the word amongst your networks so that as many people as possible can watch/listen to/record the session.

And PLEASE sign the WOW petition if you haven't already. We have until just the 12th of December (24 days, gulp!!) to get the remaining 16,616 signatures needed to trigger a debate in parliament. If you do think you've already signed it but can't be sure, could I ask you to try again, just in case somehow the signature wasn't verified or some other bureaucratic glitch failed to record your opinion?  You can sign by clicking HERE

Also, if you will be tweeting or reporting the session on Facebook or other social media, don't forget to use #DWPChaos or #IncompetentIDS here and there too.

Update : @susanas4321 will be live tweeting the debate. I'll update here as others let me know 

Saturday 16 November 2013

Job Envy

I just saw an ad for my dream job. Dream. Job.

And so Job Envy rears its ugly head once more.

In the 40 years I've been on this planet, I've never seen a job I'd be better at or where I could make a bigger difference.

It pays about £33.000 Probably just about enough, as the only way I could even consider working was if Dave could give up his job to be my PA.

But here's the killer line
"will be expected to work very flexibly and to participate in a system of shift working including regular overnight shifts" (In London :(( )
It's full time, and realistically, it would probably be way more hours than that.

Well, that's me out then.

The huge irony is that I'll be doing the job remotely, for free, anyway. Probably at least full time. I'll just be doing it from my beanbag, on my laptop with a vomit bowl nice and close to hand.

Is it really beyond us in the 21st century to trust that if they would only let me do it that way, I'd be the best person they would ever get?

Even more ironically, I can only work very flexibly using a system of shift working including overnight shifts!!! The elephant in the room is that I can't say when that might be. It might be 14 hours a day. Or it might be none.

For the first time I can remember, I'm even considering asking if they might make some fairly unreasonable adjustments.

Then, I remember how ill I feel. All the time. I wake up in the morning ill and in pain. I go to bed ill and in pain. I'm not moaning, that's just how it is. But every time I ever let a dream like this creep in, the sheer scale of the pain and exhaustion I'd feel all the time looms, daunting; enormous.

Every day I do it for myself, I choose. If I just can't do it, I go back to bed. If dangerous levels of relapse loom, I can step back.

The minute I promise to do it for someone else, for money, I have to change the only way I can do this and slowly, I get critically ill.

You couldn't build a better trap.

Friday 15 November 2013

Disabled man risks life to protest DLA changes

If ANYTHING shows how Iain Duncan-Smith's incompetent welfare reforms are targeting the wrong people, it's this story from the Northern Echo.

"Victory for Guisborough man who put his life on the line to protest Government disability allowance changes

A DESPERATE dad refused life-saving medical treatment in protest at being refused disability benefits.

Ian Calvert, 57, stopped using his kidney dialysis machine, despite tearful pleas from his wife, Jill, after being told that new Government rules meant he didn’t qualify for support.

Assessors changed their minds on day three of Mr Calvert’s protest and five days after he last used the machine.

The father, from Guisborough, who has worked his whole life and never claimed benefits before, is supposed to use the machine for two-and-a-half hours, five days a week. He has been told by doctors never to go seven days without using it.

Mr Calvert, of Guisborough, who continues to work 12-hour night shifts as a night supervisor at a chemical haulage firm, also has severe arthritis. He can’t bend, walks with difficulty and has problems using steps and getting into cars. Even sitting down is painful for him and he has special pads on his chairs at work. The Government has changed disability allowance to a new scheme called Personal Independent Payments (PIPs) which involves an assessor personally examining claimants........

Wednesday 6 November 2013

BREAKING : Court of Appeal overturn Independent Living Fund decision!

Wonderful news! The Court of Appeal have overturned an earlier ruling that it was lawful to clos the Independent Living Fund. Crucially they concluded that proper consideration had not been made to consultations which may open the way for further challenge of the 20 metre rule for the new Personal Independence Payments.

According to the BBC :

"Five disabled people have succeeded in a legal challenge to the government's decision to abolish the Independent Living Fund.

The £320m ILF currently provides support enabling nearly 19,000 severely disabled people in the UK to live independent lives in the community.

The High Court ruled in April that the closure decision was lawful.

But the five argued the court had gone wrong in law and there had been a lack of proper consultation over changes.........

You can read the full article on the BBC here

Scrap the Bedroom Tax - Vote in Parliament

Rachel Reeves confirmed yesterday that Labour is calling an Opposition Day debate on scrapping the Bedroom Tax on the afternoon of 12th November. That's only eight days away, so if we're going to make any difference to the vote, we need to let our MPs know as soon as possible

She's asked you all if you would consider coming to the Commons on the day. She's booked a wheelchair accessible room in Portcullis House (Boothroyd Room) from 10am-12.30 on the morning of the debate – the idea is to orchestrate a mass lobby from there - and she'll also be able to come and meet as many of you as possible.

We've also been told they'll try and get tickets for as many people as possible to attend the debate in the afternoon over at the Commons.

For those who can't attend in person, we're told there'll be a mass "virtual lobby" at the same time and the Mirror are supporting the last minute calls to MPs.

If anyone would like to attend either event - or has any questions - contact her parliamentary assistant Keir Cozens - - and hopefully see you there…

You can email your MP from here just by entering your postcode.

A short note, outlining why you think the Bedroom tax is unfair and asking them to either meet you at the parliament lobby, or if you can't attend, to vote to scrap the tax.

It's vital we let every MP know on a personal level and particularly to engage in conversation with LibDems. Recently, grassroots members voted overwhelmingly against the Bedroom Tax at this year's conference and since, Clegg has ordered an "independent review" (yawn) to tell him what he already knows.

We must try to persuade Liberal Democrat MPs to vote with the overwhelming wishes of their own grassroots and members rather than the compromised interests of a few at the top of their party.

There are also now countless examples of Conservatives and Tory councils rejecting the tax that you can send to your Conservative MP to show him that they would be representing constituents by opposing this levy on  principle, not as ordered by the whip. Just because this debate was called by the opposition, plead with them not to allow partisan nonsense to turn such an important issue into a democratic farce. They see the same heartbreaking stories at their surgeries as Labour MPs :

Flagship Conservative council of Westminster has just blamed the Council Tax for soaring costs of re-housing tenants.

The UN recently reported that the Bedroom Tax may breach the human rights of those subjected to it

And there have now been legal defeats in both English and Scottish law judging that it discriminates against both disabled adults and children

What more do we need Mr Clegg? Mr Cameron? It discriminates in the eyes of the law, it's inhumane in the opinion of the UN, it will cost more than it saves and 440,000 of the 660,000 affected have a long term illness or disability..

If you google your county or next biggest town, there are almost certainly local stories with the exact number of constituents set to lose out or facing eviction in your local area.

But even if you just ask your MP to vote to scrap the tax, that's good enough and you can click below to

We win one little act of faith at a time, one email at a time, one defeat at a time. 

Wednesday 30 October 2013

Kate Green's First Disability Speech

I've just seen Kate Green's first speech as Labour shadow minister for disabled people.

It rocks, and is so different to what we were hearing just two years ago, it's hard to put the two together.

Just one thing. But to me it's a big thing.

When Alf Morris, also Labour and the first minister for disabled people passed his ground breaking legislation, he called it the "chronically sick and disabled people's act."

I've campaigned primarily by trying to re-introduce that original intent back into the narrative. I always, always say "sick and disabled" and it's gives me great pleasure that it has become so universal that even DWP documents and statements now use the phrase. Language matters and if we don't want politicians - and the public - to get away with two dimensional attitudes to disability, we can't use two dimensional definitions.

Otherwise, as I said, it rocks :

"It’s a great pleasure to join Unison here this morning. Earlier this year, I was fortunate to be invited to your equalities conference, and I think I recognise some of the same faces! But I have to tell you this is my very first speech in my new role as shadow minister for disabled people – so I hope you’ll be a little kinder to me – you know so much more than I do, and you will have much more to tell me than I can tell you.

Writing this speech has however been made much easier for me by a very helpful article which was published last week by my predecessor Anne McGuire.

I know Anne is well known to you, and I can imagine there was real dismay when she announced she was stepping down from the frontbench.

She’s been an expert, passionate and committed advocate for the rights of disabled people for many years, she was a highly effective minister when we were in gvt, and I know she’s a very hard act to follow.

I’m very glad to say that she’s also my good friend.

Anne in her article last week wrote that the last three years have been the most threatening for disabled people and their families, and I could not agree more.

After years of progress – under both Tory and Labour governments – the DDA, Making Rights A Reality for Disabled People, the signing of the UN Convention – under the Tory-led coalition it feels we have gone back to the dark ages.

Disabled people have been – I think it’s not an exaggeration to say this – they’ve been vilified, while the support that they rely on has been slashed, without a care for the long term or the human consequences.

According to campaigners, disabled people have been hit 9x as hard as non disabled people by austerity cuts.

And such support as has remained in place is increasingly being confined to the most severely disabled .

Yet such an approach is simply counterproductive.

It will lead to greater isolation, reduced social participation, worse health outcomes, less chance that disabled people will be able to participate economically.

It will pile up costs and anguish for disabled people, their families, communities, and ultimately the public purse.

Yet even as disabled people are taking the hit, every day it seems there’s a drip drip of stories in the media that repeatedly portray them as scroungers, skivers, or frauds.

So I want to say very clearly – what’s being said, insinuated and implied, is wrong, it’s cruel and it’s shameful.

It creates division, and it feeds into quite despicable levels of abuse and violence.

It underlies unacceptable levels of hate crime against disabled people, and we need to call time on it now.

Labour will continue to stand against this, and condemn misleading and inflammatory portrayals of disabled people – and I want to lay down the challenge to government ministers: you should be doing so too.

But while there’s so much for us to be angry about under the present gvt, today I want to think ahead about how Labour would approach disabled people’s rights.

I hope some of you will have contributed to the work that Anne and Liam Byrne set in train to consult widely on what a Labour government could do to make disabled people’s rights a reality.

We’ve asked Sir Bert Massie to chair a taskforce advising us on how we should take our thinking forward in the light of what we’ve been told, and I’m very much looking forward to discussing ideas with Bert and his team.

But, you know, I’m already clear about the guiding principles that we as a Labour government will follow.

Ed Miliband has talked powerfully of how we are a One Nation party.

That means a vision of a better Britain, in which everyone has a stake, everybody plays a part, prosperity’s fairly shared.
And nowhere could our notion of being One Nation be more tested than in the way in which we include disabled people and stand up for their rights.

So every policy Labour develops will be about including, not isolating disabled people.

It will be about respecting them, celebrating the contribution they make, not demeaning and insulting them.

And disabled people themselves will be co-producers in decision-making about them and their lives.

Of course, every individual will face different circumstances, no two disabled people have the same lives or needs.

But we should not be satisfied until every disabled person can achieve their full potential.

Now, we’ve said we will be tough on benefits spending. That doesn’t mean blaming or demonising people, but it does mean being tough on what it is that prevents every disabled person is from participating as they could.

For many, that includes being in work.

And I think we have much more to do to address the disadvantage that disabled people face in the labour market.

Why are disabled people less likely to be in work, to earn less if they are in work, or to progress less than non-disabled people?

What barriers are in their way? And more important, what do we do about it?

I truly believe the gvt has missed a huge trick in its annual reviews of the WCA. It could have taken the opportunity to think big.

But nowhere have ministers asked – what would need to change to enable more disabled people to work and to thrive at work?

Instead they’ve concentrated – crudely – on sorting people into those who can work and those who can’t, and putting more pressure on individuals they think could work.

I simply don’t buy that binary approach. People’s lives are more complicated. Conditions are more nuanced. Work – and contribution – comes in many forms.

So I want to look very hard at all aspects of disabled people’s employment chances, not just go round beating up on Atos (though they deserve some of that), not just a bit of tinkering with the WCA.

I want to see our labour market strategy linked much more closely to our industrial strategy.

And I want us to learn from what were able to try in govt – whether that’s Work Choice, A2W, P2W, NDDP – and take a hard look at what worked and what did not.

On social care, my colleague Liz Kendall and I want a sustainable model that ensures we don’t get into a situation where disabled people end up becoming increasingly dependent for want of often quite small amounts of care.

The government clearly thinks responsibly for caring can be thrown more and more on families.

But that’s not always feasible, it’s not fair, it’s not economically effective, and it’s not what many disabled people want.

We need a system that preserves people’s independence, that is a springboard to their wider participation in society, not a means of putting them out of sight and out of mind.

And on financial support for disabled people, well look, I’ve always known that a secure and decent income is a prerequisite for full social engagement – whether that’s about participating in education, employment, being able to volunteer or participate in community activity, care for your kids, enjoy and live your life.

You know we won’t be able to reverse every benefit cut when we come into government, though we’ve already said we’ll abolish the hated bedroom tax – and 2/3 of those affected by it are disabled people.

But I’ll tell you this: I am all too aware that the cost of living crisis is felt acutely by disabled people, as the extra costs associated with disability pile up.

So it will be my priority to make sure that every measure we announce to address the cost of living crisis that families face under this out of touch, arrogant, millionaires’ gvt – that every one of our policies goes the extra mile to work for disabled people, their families and carers too.

I’m conscious of how much of your time I’m taking. It’s because there is so much I want to say.

So let’s treat this as the start of a conversation, not the end of a speech.

When I heard Anne was standing down, I too was dismayed – but I have to tell you my very next thought was that I passionately wanted her job.

I know how bad things have become in just three short years, but I know we can do so much better for disabled people. I know it can be better than this.

With your support, I very much look forward to getting to grips with the challenge. Please let’s stay in touch.

Response to the Fabians

Kind thanks to the Fabians, who have just published my response to their document on Labour spending priorities after 2015 :

"Last week, eagle-eyed welfare warriors spotted ‘2030 Vision’ by the Fabian Future Spending Choices Commission, an independent analysis of where spending priorities – and indeed cuts – should fall until 2030.

A lot of the report is good. I agree with the emphasis on early intervention, prevention and efficiency savings. But in a sense, they are political memes as ethereal as the more left-leaning ideas of clamping down on tax avoidance, scrapping trident and taxing the rich.

For instance, just how much more “efficient” can an NHS already facing £20bn of “efficiency savings” really get? Prevention is absolutely a better option than reactionary ‘cures’ but as we’ve seen with mental health treatment and early intervention, the up-front costs are rarely budgeted for.

It is encouraging that ‘2030 Vision’ states:

“In the long term, freezing spending as a share of national income will only be achieved by reducing the generosity of entitlements or abandoning universal provision in pensions and public services, which we do not think is desirable. In the next parliament ministers may need to consider reducing social security entitlements further but the acceptable room for manoeuvre is limited, as we do not support measures that will reduce living standards for low income households nor make deep inroads into universal provision.”

Also encouraging is that the report recommends a 1 per cent increase in overall spending. However, as it makes clear, even an increase in spending will still lead to cuts as upward pressures on the NHS and pensions will swallow the bulk of any increase.

But the part that seemed totally without thought, logic or imagination was the section on social security spending. In fact, it lacked compassion in a manner almost identical to that of the present government.

The report made no reference to the great social damage unfolding in Britain today because of this government’s welfare reforms. We simply cannot look at welfare cuts without accepting the enormous pressure they place on other services, such as the NHS and social care.

This government have just confirmed the cavalier slashing of the mobility threshold for disability benefits (DLA/PIP) from 50 metres to 20 metres following a last-minute consultation (won partly by the threat of legal action).

As a result, over half a million people will become housebound and no longer able to travel independently. And as funding shortages and the increased demand from an ageing population prevent social care services meeting “moderate” care needs, disabled people’s needs will rise to “substantial” or “critical”, putting more strain on local authorities and health services.

Disability cannot be airbrushed away. Barriers created by people’s impairments and by an unequal and inaccessible society still exist. The cost does not disappear, it simply shifts, from benefits to social care and from social care to health.

Reversing the cuts in this area must be factored into future spending choices or the results will simply be disastrous, costing so much more than they will ever save. How did the commission not know this?

The Labour Party have already pledged to scrap the Bedroom Tax, but the one year time limit on sickness benefits for those who may have paid into the system all of their lives must also be reversed, or at least follow Labour policy of a minimum of 2 years. 94 per cent of people who become too ill to work drop their claims within two years, so this would avoid suffering and injustice.

And as an absolute minimum, any future Labour government must pledge to again pay ESA for those awaiting mandatory reconsideration. This cost is not great, but leaving people without support for an indefinite period should shame a wealthy nation. These changes will cost around £4bn, but if not undertaken will only cost more from other departmental budgets.

However, the Fabians report suggests:

“We are not making specific recommendations but have identified around £5bn of cuts which we think could be contemplated if a reduction in social security entitlements does become necessary. These include means-testing winter fuel payments and free TV licences; extending recent disability benefit reforms to older people; and treating certain disability benefits as taxable income.”

I would like to specifically ask the commission how many sick or disabled people they spoke to and from what organisations? Evidence was submitted across 8 separate hearings, given by two or three experts in each field. Not one was a disability expert.

Firstly, let’s look at the practical considerations. Not only do those suggestions assume that another £5bn can come almost exclusively from sick and disabled people already facing devastating cuts of £28bn over this parliament, but they also fall almost entirely on pensioners. Even the coalition has not dared to roll any of their reforms out to pensioners. Can you begin to imagine the fallout?

What’s more, it suggests extending a reform (PIP) that is already certain to fail. The commission should have known that the assessments for PIP are catastrophic.

But economically, almost all of the coalition welfare reforms cost more than they save. The room for total redistribution of the spend on services and support is vast. It’s hard to say how much money Iain Duncan Smith is wasting or has already wasted on the disastrous universal credit, the failing work programme and soaring tribunal costs for incorrect Atos decisions, but £5bn is a conservative estimate.

We must start to be brave and innovative. We must take this money away from corporate “providers” failing in their duties and put it directly into the hands of individuals to control and direct their own work support, rehabilitation, treatment and social care.

If these changes are not made, we will pay just the same – probably more – but we will pay over and over in endless crises and failure.

Finally! What will Labour do for Sick and Disabled People?

Do you remember Ed Miliband's "I met a man speech"? Or Liam Byrne's "Strivers V Skivers"? How could we forget the workfare debacle?

Just how many times have we slammed our heads into the desk in despair, wondering if they actually live on the same planet as us mere mortals?

Before we can expect policies from Labour on "welfare", first we have to see they get it. Do they really see what's so horrifically wrong with this whole system? Do they truly accept it? Do they still think WCAs are the right thing or do they accept that they're fundamentally flawed, that tinkering around the edges is not an option?

In their hearts, is a system of punitive sanctions and cruel tricks still necessary? Do they still doubt and judge us as they did in power? Or have 3 years of constituent's tears and suffering thawed their resolve?

You might remember that during my conference speech, I referred to a document, Making Rights a Reality, the Labour response to a year long consultation up and down the country asking sick and disabled people and their carers what is wrong with the system as it stands.

I've read many "listening exercises" and usually there's nothing even vaguely controversial in them. They simply "listen" to the bits the politicians want to hear.

Well, here is the document, released at last.

The first section recounts the problems in the system as we reported them. I don't think much is left out.

The second section suggests ways forward if Labour regain power and would involve totally fundamental reform of the system. Far from tinkering around the edges, it suggests root and branch reform that would fundamentally change the entire nature of our social security provision for people with disabilites or long term illnesses.

When I first saw the document, we were asked what we thought. I said this :

"If the INTENT has truly changed. If we have truly persuaded you to approach the whole system differently, from judgement to trust, from sanctions to incentive, then I think this document and the suggestions within it are incredible. If we've truly persuaded ALL of the party that we need support not penalties, inspiration not punishment, then this is more radical than I ever dared hope for. But it's all about INTENT. Do you truly believe now that helping us to the best of your ability will create a more efficient, cost effective system? Because unless we've truly won your hearts and minds, unless we've truly persuaded you, this will fail as abjectly as ESA and PIP."

So, here it is. This document is a blueprint for our futures, it will affect our lives fundamentally if Labour regain power. I really hope you read it all. I think I may have given up hope that Labour were listening at all at times. I think I'd stopped believing they could hear us. This document gave me hope. I hope it gives you some hope too. Hope that they did hear us and hope that they might continue to.

Wednesday 23 October 2013

One Life - 125 Clicks

Dear, dear friends. What remarkable people you are. You, many of whom have so little but care so much. I can hardly believe that as I type this, a total of £1,632 has been donated to a stranger, someone you don't even know, just because I said how much they needed you.

Days like today are what keep me going. And I feel a great sense of hope. I see how much so many of you want to DO something. Do practical things that make a difference, even if just in one life.

You can still donate here until midnight on Friday.

Anyway, the following is very, very, painful to read. It's a thank you blog the person sent me and asked if I would post to you all. *TRIGGER WARNING* for some, but this IS the reality of why I asked you. This is the desperation this person has felt for so, so, long . It's the desperation so many feel.

One Life – 125 clicks.

"I have lost count of the number of times I have done this. This desperate act of lining up the tablets, wondering if death will hurt more than life.

The times I have turned my face to the wall, staring into the blackness, hearing the screams of tormented souls inside my head.

The terror of sleep, the shear damnedness of waking to a life that had no meaning.

What is it that gives life meaning?

Is it worth? I feel worthless. I have no worth. I have no place in a society that asks and judges on what you can give, and cares not for what you need.

Is it happiness? Happiness has eluded me for many years, sometimes there are tiny moments, sunshine breaking through the black clouds, but these are fleeting moments, dead before they have time to grow.

Is it love? Does love give meaning to life? How many things are more beautiful for being shared? How many things are more bearable because someone listened, held your hand, wrapped their arms around you and promised that it would be ok.

Today, for me, people offered love.

That love said “Let me help, let me shoulder some of your burdens, let me take away some of your worries, let me – because I want to”.

Today 125 strangers clicked, 125 people took a small piece of my worries and made them vanish.

125 people cared, 125 people believed I was worth saving, 125 people offered unconditional love.

I'm still alone, I'm still ill, and it may take a huge amount of time to resolve all my problems, but I have 125 reasons to put the tablets back in the drawer and believe that one day the sun will shine again.

Saying “Thank you” will never be enough, but its all I have to give. 

Thanks, and the promise that I will continue to give as much as I can to prevent other people reaching for the tablets and turning their faces to the wall."

A Friend in Crisis - Please Help

Regular readers will know that I'm positively squeamish when it comes to money.

The only time I've EVER asked for your support was to produce Spartacus Report, and even then, I was loathe to take any personal support from the fund.

I won't take money from unions or think tanks and certainly not corporate monoliths or political organisations as I feel I would never be truly able to say what I really need to say again. Regularly, kind supporters message me privately and offer to pay a little money to me monthly to support my work, but though I must have spent thousands of pounds of my own money traipsing across the country to represent the sick and disabled, I'm happy to do it if I can. Sometimes, a nasty little troll pops up to say I'm only in it for the money and Dave and I laugh cynical laughs - If only they knew!!

But once, when I was in a truly desperate state, a friend (Fiona Nicholson, I am forever in your debt and will never forget your kindneess) rose up and helped me. I was in hospital after the intense work of Spartacus Report, nearly bankrupt, fighting my DLA appeal and my car blew up on the way to Cambridge when Dave tried to bring the kids for a visit. On the same day, my laptop got drowned in a sea of liquid feed and I was cut off. I moaned about it a bit on twitter, then went offline for the day. When I came back, nearly £1000 had been donated to fix the car and get a new laptop. It was the single most miraculous day of my life.

Not just the money, though it was incredible, but to know so many cared and wanted to help in any small way they could.

So with all of this in mind, you know I would never ask for your help unless the situation was desperate.

Well, today, I'm faced with a desperate situation. One of the people who works most closely with me is in a terrible mess. I can honestly say, hand on heart, that none of my work would have been possible without this person. They get none of the glory, work endlessly in the background and few of you would know them if I said their name. But this person works tirelessly, day and night, producing faultless research. They are always there when I need a quote or reference, they are always there when I need support.

But this person is in the middle of a mental health breakdown. Their DLA has been stopped through an admin error, their housing is unstable and this person is on the very edge. They are hungry and hopeless. They have no-one but us. I'm truly frightened that we will lose them if something isn't done soon.

Like me, this person needs to know we care. They need to know that what they've done is every bit as vital as those more in the public eye like myself. They need help and whilst I can't wave magic wands, I can use this blog and the great support and care you've always shown me to help them.

So for just the second time since I started this blog, I'm asking you to help. Please, DON'T give more than you can afford, but if you can donate any small amount towards a crisis fund for this person, you might just save a life. A precious, brave, wonderful life. I realise I'm not even telling you who they are (it would be too much for the person) and I'm asking you to trust me when I say how vital this is.

I can't lose them. We need this person so much and it would be a crime if she wasn't standing beside me when we finally win.



Update : I'm astonished! We hit the target in just under 2 hours!!! Your generosity has inspired me more than you could ever know. Several people have said to me that they want to donate on Friday, so I'll keep the fund running until midnight on Friday. Crisis is as crisis does and I set the £1000 target with no idea how people would react. Anything still donated will see this person through until their DLA and housing problems are sorted out, so do please keep donating and a million thank yous xxxx

John Major cusses IDS

Bet you never guessed it'd be John Major riding one of those white chargers towards us eh?

"Iain Duncan Smith is trying to reform benefits. I truly wish him well. But it is enormously complicated and unless he is very lucky, which he may not be, or a genius, which the last time I looked wasunproven, he may get some of it wrong. I hope Iain is wise enough to listen to a wide range of opinion because some of his critics will be right. If he listens only to the bean-counters and to cheerleaders concerned only with abuse of the system then he will fail."

More in this Telegraph article, but I had to share that quote with you all. 

I especially love the bit about IDS being a genius being "unproven". What a delicately crafted jibe. 

Tuesday 22 October 2013

Government Cheat. Again.

Imagine if just days after they were (almost) elected, the government had announced they were going to scrap state pensions. Instead, they were going to replace pensions with Personal Retirement Payments. BUT, in the process 20% of existing pensioners would lose their pensions altogether. That's one in five no longer eligible. Overnight, just like that.

Imagine pensioners fought the changes through parliament and the Lords and WON, but the governemnt just went ahead anyway.

But then, as if that wasn't bad enough, imagine that just as they announced their final plans, they'd snuck a new change in at the last minute without asking anyone. Imagine that not only would 1 in 5 pensioners lose their entire income straight away, but they were also going to raise the retirement age to 104!! A 60% change with no warning at all!

Imagine pensioners took legal action and forced them to consult on raising the retirement age so drastically and unrealistically, but even when EVERYONE opposed it, the government just said "Meh, Oh well, we're going to do it anyway"

Well, the country would think the government had finally tipped over the edge into delusion wouldn't they? The Daily Mail would have geriatric armies with pitchforks razing parlaiment to the ground!! I imagine there would be a vote of no confidence in the government by about midday.

Yet, this is EXACTLY what they've done to sick and disabled people.

Firstly, with no warning, nothing in either manifesto, they abolished Disability Living Allowance and replaced it with Personal Independence Payments, announcing a 1 in 5 cut in existing cases.

Sick and Disabled people fought the changes with everything they had, but the government just ignored them.

Just like raising the retirement age to 104 would be a 60% increase overnight, so the government have slashed the distance you can walk before qualifying for assistance with getting about from 50 mtrs to 20 mtrs. A 60% reduction!!! Few people will qualify now, just as few would qualify for a pension at 104.

Yet no-one says a word. The media don't listen, the public don't get to hear about it and far from pitchforks at dawn, the Daily Mail actually lead the charge against us. I haven't actually see this huge announcement on the mainstream news at all.

I watched a programme hosted by Stephen Fry the other night on homophobia. It struck me how casually homophobic some nations were, how instituionalised the homophobia and therefore how practically impossible it was for homosexuals to be heard or to report crimes against them. They were dismissed as "attention seeking" "corrupting" and even "ill". They couldn't tell their real stories, and no-one would listen to them if they did.

I watch legions of sick and disabled people try to tell the public every day what is really going on here in the UK and I watch how casually they are ignored. How ingrained the belief that "We wouldn't do that here in the UK" or that we're just a special interest group making a lot of noise.

It chills me. Just like many pensioners, not all sick and disabled people can simply go and earn more money. Just like pensioners, they paid tax and national insurance believing if they became sick or disabled, they would be entitled to support.

And just like pensions, disability support used to enjoy great cross party and public support.

Who knows, maybe, just maybe no-one would listen to the pensioners either. Nothing would surprise me any more.

Saturday 19 October 2013

I Introduce : The new Minister NOT for Disabilities. RIP Alf Morris

Aha! We have the first jewelled utterances from the new Disability Minister, Mike Penning. Except he isn't called the Minister for Disabled People any more. In the Daily Mail of course. Where else?

I'm sure it will surprise no-one to know that this government who have set about demolishing or undermining every single support and service sick and disabled people rely on, have abolished the role of a dedicated minister. He is "Minister of State for Work and Pensions" and hisrole only includes the issues of sick or disabled people.

This is the first time since 1974 that we have not had a minister soley focussed on the rights and inclusion of sick and disabled people. In 1970, Alf Morris (Labour) successfully introduced the Chronically Sick & Disabled Persons Act, the first in the world to recognise and give rights to people with disabilities. In 1974 he became the first Minister for the Disabled anywhere in the world. In 1991 he introduced a Civil Rights (Disabled Persons) Bill. (Wikipedia

Well, I say the first time, but in effect, Maria Miller singularly failed to champion the causes of sick and disabled members of society in any way at all. Esther McVey did little more, though at least she had the decency to mention access and transport issues here and there.

Both accepted the role and stood by silently as sick and disabled people saw a shocking 28 Billion stripped from their incomes and services. A full Fifth of the entire deficit reduction plan. This is the biggest single assault on the lives of those with disabilities in memory. They accepted their roles as members of a DWP team, not as independent ministers in place to challenge and inspire society to be inclusive, whilst challenging ministers to follow their duties under UK and international law to ensure basic human rights for those born to face great challenges.

They both accepted the poison chalice and both kept quiet. They were both promoted for their willingness to walk on by on the other side. They both lied repeatedly. Just search "Personal Independence Payments" here  They both knew the details and have as many desperate constituents as any other MP.

Now we have Mike Penning, who in his first interview for the Daily Mail here : claims that it is "morally wrong" for people with cerebral palsy or motor neurone disease to get "welfare payments" for life. Wrong for people undergoing dialysis every day. Wrong for people on chemotherapy. He claims that it is "morally wrong" for people with quadriplegia or Alzheimers or Parkinson's to get "welfare payments" for life.

Oh of course, he doesn't tell you that in the article! That would be shocking. No, he makes these claims because

"Only 6 per cent of new disability benefit claimants have a face-to-face assessment with a medic, it has been revealed."

I'll leave others to rebutt the half-truths, mistakes and outright lies in his article - they'll do it much better than me and I can feel the deferred glow of a thousands heated keyboards smoking as we speak. 

But it's very important that the public know that what Mr Penning fails to mention is that the ONLY way someone can qualify for Disability Living Allowance at present on a paper assessment alone, is if their impairments and diagnoses are so significant, their medical evidence so strong, written by the GPs and Consultants that know them best that a Department of Work and Pensions own decision maker, has no doubt of a genuine claim and which rate it is appropriate to award. 

They know that the conditions I list above and hundreds more will never get better. Many will only get worse. They know that it is a non-sensical waste of taxpayers money to insist that a non-verbal young man who will never walk or feed himself is put through the unnecessary trauma of attending a face to face assessment with someone they have never met. They know that the impairment will always mean that the individual will need our care and that life will always be more expensive for them than someone living without an impairment. 

That's why they make the decision to only see people when more information is required, or a face to face assessment might be helpful in complicated cases. 

I wonder if faced with this new information, the tax-payer might actually agree, that it's efficient to assess the people you need to assess and make the process as stress free and uncomplicated as you can for those who clearly qualify? 

As the article states, the replacement for DLA, PIP is about to be rolled out. An incomprehensible 1 in 5 people will lose the support they need to get out of bed in the morning or get dressed or leave their homes. 1 in 5!! 

If you were part of a government about to attempt to slash vital support so vastly, you'd need a pretty good line wouldn't you? How would you even begin to convince the public that you're right?

The only way is to imply that that 20% of all people in the UK relying on us to help them to live with the dignity we take for granted, don't need us any more. It's to imply millions didn't really need the help anyway. No-one checked them, they could be saying anything! "Not seen by a doctor" implies they have nothing wrong with them, perhaps no diagnosis. But the headline refers to a benefits doctor not a GP or consultant. 

You convince the public, just as you did with those who were too ill to work, that someone's getting an easy ride, taking something for nothing. Taking them for mugs. All those people with Alzheimers and breast cancer, and kidney failure and severe brain damage. 

And don't you have to be a pretty special kind of soul to make that argument knowingly? Aware that misrepresenting the people you will harm is the only way to get things done?

**UPDATE Thanks to FOIs from Jayne Linney, and quick linkage from @Hossylass Caroline Richardson and Anita Bellows from DPAC (@anitabellows12) here are the figures Mike Penning refers to at the top of P6

As you can see, "Medical Examination Report is the 6% figure of those who were actually seen face to face by a DWP engaged assessor. 40% GP, 10% on the claim form they submitted alone, and 45% on "other evidence" perhaps a community psychiatric team or a consultant.