Incarceration

I want you to imagine something for me.

Imagine that without a car you can never leave your home. Ever.

You can't use public transport, because you can't get to the bus stop or the train station, even if you could get your wheelchair/scooter etc on board. You're isolated, as family live in a completely different part of the country. Without your car you can't get to work, you can't see friends, you can't get to a shop. Without your car you literally become a prisoner in your own home.

*------------------*

It is no exaggeration to say that is literally the case for hundreds of thousands of sick & disabled people here in the UK. Wearespartacus.org have done a comprehensive analysis of the impact losing a motability car will have - those who are particularly interested in learning more can read our comprehensive report, Reversing from Recovery here : http://wearespartacus.org.uk/reversing-from-recovery/

Until recently, the Blue Badge scheme that allows people with very serious mobility impairments the ability to get out was a lifeline. To qualify, you must be virtually unable to walk. The scheme is certainly rife with fraud, but crucially, not committed by sick and disabled people themselves, but by family members who should know better or criminals who know that a blue badge is a valuable commodity on the black market. 

For years, I have sent off my passport photos every 3 years, with £3 to cover costs & my new badge has arrived by return post. As it happened, in my case, my Mum worked at County Hall for years, so the badge office knew me well, knew exactly how unwell I was and dealt with my renewals quickly and compassionately. 

Now, that - like every other aspect of support sick and disabled people rely on to get by - has all changed. 

Last week I got my renewal letter and with it, 14 PAGES of information and questions to plough through and answer. The form itself is 8 pages long. You can no longer send off for the badge, you have to collect in person at a local library. If nothing else, just imagine how difficult that is going to be for some people. My library, for instance is in the centre of town with just three disabled parking spaces outside, up 7 steps. If you are housebound anyway, this new process will make getting a badge all but impossible. Ironically, the very people who need a badge the most will be the ones unable to get one. 

The fee has gone up from £3 to £10 and I'm sick of politicians who don't realise that £10 to people living in extreme poverty might as well be £1000. £10 off ESA, £10 off the rent, £10 from Disability Living Allowance (DLA) £10 off social care - This is why we so desperately need a cumulative impact assessment of ALL the changes and why the government are so loathed to do one. 

Most disgusting of all though, is the tone of the letter and renewal form. Like ESA before it and soon DLA, all are to be assumed guilty until proven innocent. Some examples - just from the first page!

"This section must be completed by all applicants; all fields are to be completed." "Documents must be certified by a person who has known you for a minimum of two years. They should not be related to you" "send ONE proof of address and ONE proof of identity." "DO NOT SEND ORIGINAL DOCUMENTS" "The applicant's name must be written in block capitals on the reverse of the photo" "Applications will take up to 8 weeks" "There is no guarantee that an existing Blue Badge will be renewed based on previous information provided"......

And on and on, making absolutely sure that the person so desperately in need is good and terrified. The more honest you are, the more frightening the form seems. Fraudsters and criminals won't even see these forms as the misuse of badges is misuse of existing badges, very rarely at the application stage.

Again, we treat 200 people as though they are guilty to catch the one cheat, we do not accept the one cheat in order that 200 people may feel secure and supported. 

Again, we should be bloody ashamed of ourselves. Nothing sums up the mealy mouthed, envious unpleasantness of attitudes to sickness and disability in our society today than selfish gits who believe they are missing out because they have to park a few steps further away from a shop entrance than their profoundly disabled neighbour. The times I've seen people offer to trade their badge with some nasty little creep in a comment thread, in exchange for their paralysis/MS/Cancer, but funnily enough there are never any takers. 

Who does it really hurt if people take advantage of the scheme? It doesn't cost anything, it only hurts the disabled people who can't park where they need to. Need to you note, not want to. 

Society disgusts me at the moment. 

Are disabled people protected from Government cuts?

Guest post by Sarah Campbell (@spoonydoc) on actual situation on disability benefits & whether they are, in fact, protected from the 1% freeze on benefits. 

The Autumn Statement and Disability Benefits

You might quite rightly be mistaken in thinking that disabled people came out quite safe and sound from this year's autumn statement. After all our chancellor announced that although restrictions were going to have to be made to most welfare benefits, disabled people and carers would be supported and disability/carer benefits would not be affected.

The problem is that in the next breath he announced that, along with most other working age benefits, ESA would be included in the restriction to a 1% annual growth for the next 3 years. Well below the rate of inflation this amounts to a cut in real terms.

ESA is mostly paid to disabled people who are too sick to work. To qualify for this benefit they have to have undergone rigorous testing and passed the much maligned WCA (Work Capability Assessment) administered by ATOS and been classed as unfit for work. Some are considered to be able to work again at some time in the future (possibly years). These are put in the WRAG (Work Related Activity Group). Others are considered too ill or disabled ever to work again and are put in the Support Group.

So how can the chancellor be promising disability benefits be exempt when ESA is included in the cuts?

Well turning to the small print of the Treasury Costings (p33) we see the following:


“The following benefits, tax credits and payments will be up-rated by 1 per cent for 3 years from 2013-14:
• The main elements of Jobseeker’s Allowance, Employment and Support Allowance (ESA), Income Support, applicable amounts for Housing Benefit;
It will not apply to the premia within these benefits relating to disability, pensioners, and caring responsibilities, the support group component of ESA, or the disability elements in tax credits, which will be uprated as usual.”
A claim for ESA comprises:

A main element of ESA (the bulk of the benefit)
A Support Group component or WRAG component (Anyone unfit for work gets one of these after passing the WCA)
Any relevant disability premiums (not everyone qualifies for these)So what does this mean?

For both WRAG and Support group claimants the main element part will only rise by 1%.
For WRAG claimants the WRAG component will only rise by 1%
For Support Group claimants the Support component will rise by inflation.
For both WRAG and Support Group claimants any disability premiums will rise by inflation.

IN SUMMARY:

WRAG claimants who do not receive disability premiums will see their benefit restricted to 1% growth for 3 years.
All Support Group claimants and those WRAG claimants who receive disability premiums will see their benefit restricted to a growth slightly higher than 1% but still significantly lower than inflation. In fact it works out at approximately 1.4% according to DRUK.
ESA claimants are seriously ill and disabled people who have fairly and genuinely been found unfit for work. The statement that disabled people will be supported and disability benefits will be unaffected is totally and unequivocally untrue. It is high time that someone stood up and said so.

Benefit Uprating Bill - Today!

As most of you will know, I'm desperately unwell at the moment.

Today, parliament will be sitting to hear the second reading of the Benefit Uprating Bill. You can watch live here from 11am : http://www.parliamentlive.tv/Main/Player.aspx?meetingId=12161 (Once other business dealt with, probably nearer to 12.30)

If any of you want to follow the debate on Twitter, I propose we use the hashtag #BUB

I've asked for volunteers to take over my twitter account for a while, as I get so much traffic and RTs it really does help to spread awareness far and wide.

It seems Labour will be supporting us. The language may not be ideal, but they are taking a big chance on us, risking a mauling from the right wing press as supporters of "lazy scroungers" I believe it means the "worm has turned" On welfare, Labour seem to have decided that supporting us could be a vote winner rather than a vote loser & I want to do everything I can to prove them right.

So, my warrior friends, once more unto the breach. Spread the truth, challenge the lies and shine a light onto their proceedings they would rather stayed obscured.


**Do RT or share this short bulletin to help spread the word. Many thanks

Welfare Whoppers

Before I started campaigning, I was under the naive impression that politicians were not allowed to mislead parliament.

I thought there were very serious penalties.

It turns out, there were no penalties at all. The government can say what they like, lie through their teeth, invent statistics, and no-one can stop them. Not one Prime Minister since the middle of the 17th Century has been disciplined for misleading the Houses.

Today, we see Iain Duncan-Smith lying about Tax Credits here

It isn't a casual fib or a slight distortion, it's an out and out lie. At least we ought to call it by its real name. He claims that Tax credits rose by 58% under Labour when the actual figure is 8%

A twitter friend reminded me of this lie too and it occurred to me, perhaps we should collate all the lies here in the comment thread below? If we can put together a comprehensive list, I will print them all out and send them to John Bercow (speaker of the House of Commons) and the parliamentary standards commissioner. In the past, our complaints have been ignored and fobbed off, but if the evidence we collect is unarguable, surely something could be done?

If you remember any particularly misleading claims, could I ask you to post the link below, preferably with a Full Fact or Fact Check analysis and a very short precis of what the article is about? Any lies relating to welfare will be helpful, whether from of IDS, Grayling, Miller or Freud (obviously any others you think are relevant too.)

If nothing else, this blog will act as a record for future historians.

Those of your who often ask what you can do to help, here's a nice, simple little research project that could have a big impact.

Happy New Year to all of you and let's resolve today, on 1st January, that this lying stops.

The Marmite Coalition

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

I disagree.

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

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

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

The modern Conservative party as we know it is finished.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

The Twilight Times

Oh bloggy-wog, I am in a fix.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

The Last Nail in PiP's Coffin?

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

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

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

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

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

Finally, the government had to promise to publish the remaining submissions to prove they weren’t lying.

They said that they would publish them in chunks over the coming year, as there were so many.

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

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

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

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

I think it’s worth doing though. This is one deadline we need to keep :

Date in Diary – The day we blow the case for PiP apart