Monday 24 February 2014

BREAKING NEWS : WCAs suspended indefinitely!!

Some properly good news for once! are reporting that all repeat assessments for Employment and Support Allowance (previously incapacity benefit) will be paused indefinitely
"In an urgent memo obtained by Benefits and Work, the DWP have told staff that due to a growing backlog at Atos all current employment and support allowance (ESA) claimants will be left on the benefit, without further medical checks, until another company can be found to do repeat work capability assessments (WCAs)."
“The number of cases currently with Atos Healthcare has grown. A decision has therefore been taken to control the referral of repeat work capability assessments. Therefore, with effect from 20 January 2014, further routine repeat assessments referrals to Atos will be deferred until further notice."
You can read more HERE

We warned MPs repeatedly that ESA would implodeWe even pressed Mark Hoban very hard on this issue when we met him last year. We suggested that it was repeat assessments causing ESA to grind to a halt and suggested that he pause the national of Incapacity Benefit claimants until the backlog could be cleared.

And now they've done just that!!! 

So rejoice my friends. YOU did this. Moments of pure satisfaction only come along once in a while, so promise me you'll celebrate.

Magic Mondays

Who says magic can't happen on a Monday morning? From now until the election we have to do just one thing. We must persuade the public that they're wrong about welfare. Just that one thing. If we don't, whoever wins the election will not see a need to address the great social crisis unfolding.

So from now on, every Monday, if everyone that reads this blog persuades just one other person that they've been misled, that "reform" is simply another word for hate, we will have converted nearly 200,000 people.

It doesn't matter who it is - a nurse or doctor, a teacher or school-gate Mum. Maybe the electrician or the postman. You might email an old friend and tell them about the fears you have for the futures of sick and disabled people in the UK. Best of all, write letters to your local paper. Every Monday, a quick email to the letters editor pointing out the new PIP 20 mtr rule or the chaos of Universal Credit or the total mess of ESA and you could have a big impact.

One week at a time, one person at a time, it might not seem like much but it could make a big difference. If you plead with the people you convince to convince others, that 200,000 might become a million and those million night become 2.

As we've always reassured one another, alone we whisper, but together we shout.

Saturday 22 February 2014

Keep Persuading

Many of you will have written to your MP already asking them to attend the #WOWPetition debate on 27th February.

Sadly, that means that by now, some of you will have received standardised replies from coalition MPs, lazily parroting DWP soundbites and half-truths.

Disheartening though it always seems, it's always worth following up a "thanks, but no thanks" reply in the hope that you can persuade him or her to change their mind. If nothing else, it might start a dialogue you can build on in the future.

Below is my impassioned reply to one such letter. Obviously you can't just cut and paste it to your own MP, but I hoped it might  be helpful to use as a guide.

"A Dr Simon Duffy  from the Centre for Welfare Reform has just a few days ago released the most comprehensive cumulative impact assessment (CIA) of all the welfare changes so affecting sick and disabled people to date. You can read it here :

Perhaps it won't be perfect, but if you actually read the DWP's own equality impact assessments , I think you would have no choice but to agree that they are inadequate and incomplete.

For instance, they all claim that there will be no impact on health or social justice but even if just 10% of what Dr Duffy concludes is correct, this clearly isn't the case.

As ever though in politics, we're arguing on a pinhead over whether or not a CIA is feasible. Meanwhile the real issues are hididen somewhere amongst deep, dark paper trails.

I would have given anything to be an MP, but sadly, I just got too sick. I envy that you've been elected to parliament by an electorate of your peers. An honour just 650 people can claim. I know that I'm not the only one of your constituents to write to you about this issue and I know that desperate pleas due to benefit changes for sick and disabled people make up an ever increasing part of your mailbag and surgeries.

I recognise the now familiar DWP soundbites in your reply wearily and they sadden me. I can't believe that anyone who reads the welfare reform impact assessments from the DWP  in full could stand by these policies.

However, none should, in good conscience, refuse to contemplate that Dr Duffy's findings might be a good proximation of what's unfolding.

All I, or any constituent asks, is that you represent me and attend the debate with an open mind. The dignity and well being of some 7000 of your sick or disabled constituents may be at stake. 

To ask that you judge the issue on merit and hear what opposition politicians you may hate have to say, with an open mind is a small thing to ask.

I ask you to reconsider and hope very much to see you there on the 27th."

Please complete our ESA Survey

We all know that ESA is broken. We look at the volume of appeals and their success rate, the inaccuracies and untruths in Atos reports, the stress and hardship, the small numbers getting work, and it all says ESA doesn’t work.

But the flaws are deeper. It’s not just that the assessment is poorly applied or that it’s too strict, it’s that the whole system is set up on flawed principles.

Now is the time for us to say that. The cross party Work and Pensions Committee has opened a review into ESA, and they want people to submit evidence.

Spartacus will be responding, but as ever we don’t want to say what a few people think. We want to know what YOU think. You can help us by completing our survey here

It would seem that Atos will be removed from the equation. Both Labour and now the coaliton have pledged to remove the ESA contract from them by 2015. But will this help? Will it solve any of the problems? As we've warned repeatedly, it's very unlikely indeed. 

Because the DWP control everything. From the "descriptors" that are used to measure ability to work to the details of the letters Atos send out. From the style of the WCA interviews  to the accessibility (or not) of the centres they use. 

Successive governments also did little or nothing to define the nature of "work" with a long term illness or disability. Can you work full-time? Can you work part-time? Is how much you can do work just about your health? Or is it also about whether you have to travel? If you have to commute to work does that reduce how many hours you can do? Do you have to interact with anyone in any way? That can be more tiring. Do you have to work at set times? Does fitting life around that and adding in extra rests if the set time coincides with a flare-up mean you can’t work as many hours as if you were allowed to work at hours of your choosing that vary from day to day and week to week?

If the work is pressured, can you guarantee to meet deadlines? Will attempting to do so mean pushing your body beyond its limits? Could that make your health worse in the long term?
None of that is captured in the descriptors, and it can’t be captured by points, because it is so dependent on so many factors.

Then there’s the issue of how the assessment should be made. One-off appointments with people specialised in neither your area of employment nor your health condition is known internationally to be a poor system.
There’s no time to build rapport or trust; there’s no opportunity to consider variation in ability over time; there’s no expertise at understanding you or what you can do; there’s no understanding of your specific situation and health.

Reading the international evidence on what works and what doesn’t and then comparing it to ESA is a bizarre experience. It’s like the government chose to do exactly the opposite of everything that was recommended. Get a specialist? No, leave it to anyone with basic medical training. Build a relationship of trust? No, build one of mutual distrust and sanctions. Build up an assessment over time? No, use a snap-shot. Look at wider factors? No, deliberately ignore them. Actually identify what job with what support can be done? No, be absolutely determined NOT to do that.

I know that it might seem like the government and others have all the evidence they could possibly need that ESA is failing. But it's their game we're playing and they make up the rules. Refusing to play it at all won't achieve any change at all. 

All we can do is keep on submitting evidence, keep on speaking out, keep on explaining until they face the inevitable. 

PLEASE. Don't give up now, now that we're so close. Take a little time to complete our short survey and make sure that YOUR voice is heard. Make sure that you can say "I was part of the resistance."

Click     HERE   to complete the survey and please, encourage others to complete it too by posting it on forums or websites that you use and sending it to as many contacts as you can. 

Thursday 13 February 2014

The problem with bigots is....

The problem with lung disease is, you kind of have to breathe. At least a bit regularly.

And the problem with heart failure is hearts can't really fail. They're just not optional.

The problem with bowel disease is you have to eat. Quite a lot. I've tried stopping, it doesn't really work. And food is incredibly yummy. And it nurtures our souls more than our taste buds let on.

With kidney failure, hours dedicated to satisfying the great dialysis beast allows you to process liquids, which is fairly non-negotiable by anyone's standards.

And the problem with cancer is it doesn't give the tiniest shit which one of us it invades or where.

But the trouble with bigots is, they ignore all of that. They can only see one problem.

"Why is that bloke down the street getting something I'm not? And why should I pay for it??"

Monday 10 February 2014

Unstable Mable

I found out last week that my very brilliant consultant (hereafter referred to as "The Prof") is moving on. He will no longer be the star around which all broken bowel people revolve.

When you've suffered from a serious, long term illness for most of your life, it's hard to know how to express to other "ablies" just how important a good consultant can be. They literally hold your life in their hands. Not just your physical life but your quality of life, your mental health, your ability to plan for and hopefully enjoy at least a little of your future. 

A good one sort of settles into a place of advocate, parent and God. They must care about you and believe in the person that you are, not the person they assume you might be. 

It takes years to build up a real relationship. As time goes by, they start to see you in your various different states of being. In my case it might be begging them to let me out on "day release" from hospital to get to an important media or Westminster event. Or maybe bearing pain they don't often see people tolerate. They see you feisty or ground down, logical or illogical. They must build up a picture of you during precious grasped snippets from rushed 10 minute appointments, frenzied ward rounds and secretarial filters. 

Add a pinch of awkward Suey and her recalcitrant bowels to the mix, who never knowingly behave the way a doctor might expect them to and it can take a LONG time to build up the rapport you need. 

After 18 years, my old consultant knew me often better than I know myself. He always had an instinct for when I needed urgent surgery and battled for me to get it from the uber-elite surgical Gods. It might surprise some of you to hear that the opinions of some of the world's leading bowel experts count for nothing with a surgical team. As soon as they are bought in by the medics, they insist on running many of the same tests all over again, ploughing through all the same steps you've already taken with the medical team, answering all of the same questions. 

My crohn's has never behaved "normally". (If indeed there's ever a "normal" case of bowel disease) Scans fail to reveal my hidden nasties, blood tests never register inflammation and thermometres never show raging temperatures. It took at least 5 years for even Super Doc to really believe his own eyes and learn to make his decisions on based on what I'm telling him is happening, when all the evidence shows the contrary. 

Super Doc also saved my life countless times, and I don't think I could find the right words to sum up the enormity of what that means to me and others like me. You end up with enormous fondness for them, laced with a sprinkle of awe and a good dollop of gratitude. 

But I lost Super Doc a few years ago (some long term readers might remember the "Debacle of the Other Place") and transferred to a London hospital. Now, even The Prof is leaving me just as he started to build up a picture of who I really am. (And I flatter myself, maybe even came to like me a little bit too.)

In a boringly familiar twist of Suey fate, I'm losing my lovely GP at the same time too. 

She defended me against The Other Place, believed in me when few would have dared, supported me through DLA and ESA applications and generally made my life easier to live in so many different ways. 

It feels like I've been abandoned by the medical Gods yet again. Like a grief, I have to simply tolerate it and hope that whoever takes my shell of a life in their hands next has compassion, empathy and intelligence. (Don't ever think that's a given, it's not) I have to hope that somehow life and circumstance gives me opportunities to show the newbies who I really am and what I need quickly, before the next crisis rears it's ugly head and I REALLY have to depend on them.

Somehow, yet again, I have to wave goodbye to the little bit of security I've built and start all over again. Like losing a parent or a partner and trying to come to terms with the fact that you'll never be able to rely on them again, that they won't be there when you need them most, in your darkest hours of pain and terror. 

The sheer dread of what might follow makes it hard to breathe. If I think back over the 3 decades that I've suffered with Crohn's disease, there are saints and sinners, saviours and bullies in almost equal measures. All I can do now, today, is pray that the saints and saviours are sent my way. 

Tuesday 4 February 2014

The Big Benefits Row

Please share this article anywhere and everywhere you can. Thank you x 

As many of you may know by now, last night was the Big Benefits Row on Channel 5. "Roll up! Roll up for the spectacliar sight! Real life poor people for your viewing delight!" 

I was contacted by the show's producers early. Would I be on a panel to discuss welfare changes? They assured me it would be balanced and to their credit, I do think they worked very hard to make sure a range of views were represented in a way that shows like Benefit Street and On Benefits and Proud neglected entirely. Had I been a beleaguered austerity-junkie audience person, I think I would have had a rare taste of how it feels to find oneself outnumbered.

As the days passed before the show, I got that sneaking feeling I was being downgraded. Perhaps I should explain. I've done a lot of media now. Newsnight, BBC News, Sky, Radio 4, Radio 5 Live, LBC and many, many more. The pattern is almost always the same. I've learnt never to tweet about bookings until I'm in the actual studio getting miked up. For every 5 approaches, I suppose one might actually come to something.

Initially, the plan is always for real a debate, or a full feature on welfare cuts or a hard hitting doumentary. As the producers of the shows try to get guests to appear to discuss disability welfare cuts in any serious kind of way, they realise the task is almost impossible.

For some time now, the DWP and No.10 have refused to put anyone up against me. (and presumably other campaigners) at all. At first, 3 (all BBC) went ahead, but the various researchers were all genuinely shocked at the lack of government engagement. All said they'd never known such blanket refusals to debate an issue.

Perhaps more sinisterly, they were shocked that invariably the DWP refused to take part unless the stories were edited their way. Iain Duncan-Smith has written repeatedly and furiously to the BBC about their lack of balance in reporting welfare issues. Anyone who follows the debate with even a flutter of fleeting interest will know just how ironic that is. If ever there has been an issue so poorly reported, with so much ignorance and so many lies, the current "welfare" debate must be it. 

But it's clever isn't it? Refuse to debate at all and generally it will mean there can be no debate. You can shut down any and all opposition simply by saying nothing at all.

Anyway, I digress.

Even if a show does get made, invariably it gets watered down to the point of, well, no point at all really. An hour becomes half, which then becomes 15 minutes, which then becomes a 3 minute bulletin. A coalition MP becomes a "governmnet spokesperson" which then becomes an intern, which then ends almost without fail, with a member of the Taxpayers Alliance. And it's just too easy to make them look silly, they do most of the work themselves.

I've been edited to make me look like a "shirker", I've hauled my crohn's riddled butt all the way to London only to be told "Oh, sorry, it's not happening now, did no-one let you know?" I've been booked for shows under the pretence that a particular subject-du-jour is the subject only to be ambushed scrounger bashing vitriol the moment we go live. (Yes Nick Ferrari, I do mean you.) I've been made to walk to locations, despite pointing out repeatedly that I can't walk far or stand for very long. "If you could just manage....."

I've uncovered vast and shocking welfare stories only to find I can't get them published anywhere. Bumped for Egypt. Bumped for Syria. Bumped for chickens in cat outfits. (That last one's not even sarcasm!?!) Repeatedly I hear in a loop "But welfare isn't a story."

Well no, why would it be? The current social security cuts are stripping away an eye-watering £28 BILLION from the support and services sick and disabled people rely on just to get through the day. That's a full FIFTH of the entire deficit reduction plan falling on those who often have no voice to defend themselves. One pound in every five!!!

In all, I've found dealing with the media to be the most revealing and frustrating part of the whole "being-a-campaigner" thingy. You have to get REALLY tough REALLY quickly and be prepared for an infinite prism of disappointments and frustration.

And so I bumped down those now familiar media steps last week with depressing familiarity.

First I would be on the panel. Then the panel became the front row with assurances all of the main invitees would be sitting there with me and all would get a fair say. I was an "invited guest" and "disabled people's voices would be heard blah-blah-diddly-blah". And so yet another hour became a 15 minute section of the show from which I might get to throw in a 3 minute soundbite or two. This in turn became "You'll get a chance to speak from the audience" which fizzled out into "Ah, wheelchair issues mean you can't sit here/there/anywhere so we'll tuck you in that dark the corner out of the way."

As I said, I've been around the media block a few times now. 4 years of blogging and campaigning is actually 56 in human years. I was emphatic with the producers from the start that I wouldn't waste my energy spoons getting to London for nothing. They assured me repeatedly that that wouldn't be the case.

As it happened, I also had a hospital appointment in London yesterday at 3pm. As only us sick people can really know, that is traumatic enough in itself. It takes 3 hours for Dave to drive me to central London and 3 hours to get home. Ordinarily, that alone would exhaust me for days after the actual event but instead, yesterday, I chose to wait 6 HOURS for the Big Benefits Row to start. By 8pm, every one of my loved-ones know not to phone me or expect intelligent reponses. Waiting up to do a show that starts at 9pm is significant in my world.

Sickies like me will also know just how much it costs in emotional energy to even contemplate a day like I had planned for yesterday. The only way I can get through them is on adrenaline. Bodies like mine, so used to ignoring physical crisis signals, compensate the only way they know how. As the adrenaline floods through your body it makes you feel shaky and sick. I can't eat anything significant, I get a bit hyper. That good old fight or flight response recalls echos of demands from its genetic history. I wouldn't even think about eating anything significant before a show like The Big Benefits Row anyway, just in case it causes some involuntary vomit to land on someone's shoes. (*Other bodily fluids also available by request))

But our trials had barely started. Mik Scarlet (Writer for Huffington post and the Independent) Jack Monroe (working for Sainsbury's, ITN to name just a couple). Lisa Egan (Sky contact for disability related welfare issues & an articulate, intelligent blogger.) and I (Guardian, BBC & this little bloggy-woggy) all met up beforehand to get something to eat and so arrived at the studio together.

Having only needed to use a wheelchair for just under a year, the reality of disabled access has shocked and appalled me too. Did you know for instance that most trains only have ONE disabled space and so can only take one wheelchair user? No, I had no idea either. And did you know that you can't get in to most restaurants and shops despite access being a legal responsibility? Nope, nor me. Or that supermaket aisles often make it impossible to get around a shop independently? Or that you can't use almost any of the London Underground?I didn't know any of that stuff

When we got to the Channel 5 studio an epic confuddle broke out. As I've also learnt, they often do when some people are faced with several people on wheels all at once. They could only take 3 wheelchairs. 4 would apparently tip the building over into a dangerous and unforgivable fire risk. They couldn't evacuate four of us!

I'd been trying not to cry for about two hours by this point and the only way we were all going to get in was if I left my wheelchair in the foyer and hobbled down to the basement studio. I was the only one who could walk at all.

Once on the set, even bigger confuddlement broke out. "You can't put them here, they're in the way of the cameraman" (I thought the "them" was a nice little dehumanizing detail eh?) "You can't let them sit at the front, it makes them look too important" (I precis) etc etc.  After at least 10 minutes of this infathomable conundrum, Mik shouted to the audience who were now in their seats ready for the show to begin. "Get a job they say?? Are you watching this? Most of the time, we can't even get a bloody seat!"

I noted with great irony that the panellists had to sit on a raised platform anyway, so even if they had kept a disabled person on the panel, it's unlikely they could have overcome the first and simplest of barriers and actually got up on to the stage.

Already brimming with brittle frustration, adding Edwina Curry and Katie Hopkins into the mix with no off button took every ounce of professionalism I had to survive without actually combusting.

Surprisingly, I thought the debate was very good. If anything, it was biased in our favour for once. Matthew Wright held Hopkins and Currie to account frequently and the range of people who did get to speak were varied. I think it surprised everyone when Rachael Johnson, (Boris' sister and editor of The Lady) and Sam Delaney, (editor of Heat magazine) defended people who have to rely on social security and presented some very helpful myth-busters about "welfare".

However, I could barely breathe with pent up frustration. As each part of the show went live again following an ad break, I'd pray that something would be said about disability and every time it wasn't, I deflated further and further (DON'T be a crybaby on national TV...DON'T be a crybaby on national TV....DON'T be a crybaby on national TV, repeat) How are you suppoed to have a debate about social security and not include sick and disabled people? We rely on it more than any other group! Here's a few facts, just in case you've never read this blog before

Disability Living Allowance (DLA) is being cut by 20%
The criteria to qualify for DLA slashed has been by 60%
1 MILLION people are to be stripped of Employment and Support Allowance
The Independent Living Fund has bee scrapped**
1500 people lost their jobs as Remploy factories were all closed
Just 3% of the entire welfare budget goes to unemployed people
Social security fraud is around £1.2 Billion per year - less than half of 1%, or 0.15% of total welfare budget. That's just £1.50 lost for every thousand or 0.15% of the total welfare
The DWP pay out much more in their own errors - 2.2 Billion
A whopping £16 BILLION goes unclaimed, generally to avoid the stigma of "welfare"
We have some of the toughest criteria for claiming social security in the developed world.
Is our UK social security systemn too generous? No again. In international terms we come just 46th out of 51, paying some of the lowest benefits anwhere
440,000 sick or disabled people will be hit by the Bedroom Tax. That's over 2 thirds.

The very second the show ended I got Dave to bust me out of there without even saying goodbye to MJ or Lisa or Mik. I cant recall another time I've been such an emotional coward, but I just had to run away (well, wheel away, but you get the idea)

As Dave pushed my official fire risk chariot back to our car, I tweeted "Yes,I was kicked off the panel at the last minute and no, of course there was no-one disabled person in my place" #BigBenefitsRow

But just as he did, something magical seemed to happen as we started the tedious drive home. My tweets exploded all over twitter, it was all I could do to read them quickly enough as they flooded in. Thousands and thousands of you, it was quite awe inspiring. By midnight I was trending 4th in the UK

And yet again my friends, we shall have to make our own news. If you've read to this point, PLEASE don't close the page until you've shared it with your networks. You can use the buttons just below to retweet or post it to Facebook. But PLEASE, if you can support us in any way, sharing this article can show producers of shows like the Big Benefits Row that we DO have a voice, we DO matter. 

As campaigners we've often reminded ourselves that "Alone we whisper, but together we shout." 

I imagine that the producers of last nights BBR got a better offer than me. Someone with a higher profile who they thought might attract more viewers. Some suggested it could be more sinister than that, but I'm convinced that for most affluent, white, able-bodied producers, long term ilness or disability simply doesn't come on to their radar. Another genetically-programmed response means we simply cannot believe in our own mortality or believe that any harm can ever cast shadows over our lives.

We can show them - and the public - that on social media if nowhere else, sick and disabled people can -and will - be heard.