Wednesday 27 March 2013

BREAKING : #BedroomTax faces legal challenge

Fantastic News!!!

Following literally months of work (particular thanks I believe to Jane Young and Sue McCafferty, they've just announced An "urgent" Legal Challenge (Judicial Review) has been successful granted over the #BedroomTax !!!!

The article explains how 
"Leigh Day are taking legal action on behalf of two disabled adults. They claim that new housing benefit regulations, due to come into force on 1 April 2013, are discriminatory, as they will have a far greater ‘devastating’ impact on disabled people than on non-disabled recipients of the benefit."
It goes on to say 
"The Court has ordered an urgent hearing at the beginning of May; we hope this will mean that the terrible anxiety our clients and many others are currently facing will be short-lived.”
You can read all about it here :

Huge congratulations to all involved. This is a really significant step forward. As the government's welfare reforms face new legal challenges by the day, campaigners everywhere are showing we will take our issues as far as necessary to see justice. 

Sunday 24 March 2013

Time Limiting ESA - The Reality

Regular readers will remember how very hard I and others fought the Time Limiting of ESA proposed in the Welfare Reform Bill. For me, it was the most disgusting proposal of all. We won an amendment in the House of Lords that promised "AT LEAST 2 years". But the government simply overturned it using financial privilege. 

The following real life story, beautifully written by Tricia Long, a supporter, shows why we were so right to fight and why the government MUST reconsider this terrible betrayal of sick and disabled people. For the 700,000 people estimated to be affected, just like Tricia, please share her story, it deserves to be told.

"I have epilepsy and experience 3-4 seizures a week which leave me tired, disorientated often emotional and quite vulnerable.

In between I attempt to maintain a “normal “ lifestyle but have obviously had to adapt this to take into account my seizures that have no real warning  signals or particular triggers, although they are exacerbated by stress and tiredness.

About a year ago, my long term Incapacity Benefit, which I had been receiving for a number of years, became Employment Support Allowance.

At the time I didn't fully understand the implications of this, in particular the time limited aspect of it, although I did feel the language set the tone of what this benefit represents.

I filled in my form and was duly placed in the work related activity group (WRAG). This surprised many people who know me and understand that my condition does not really make me fit for conventional employment.

However I was already becoming upset by the process of having to give the worst case scenario of my condition in order to “justify” my benefit and bought into the idea that perhaps this new policy would be enabling rather than disabling - many of the previous disability benefits had been - maybe this would be a positive thing.

I decided not to appeal the decision but grasp the potential opportunity it might offer me to support me into some employment.

I was very let down and disillusioned by what happened next. The tone of the letters I received from DWP were aggressive and seemed to assume that I was not working through choice rather than disability.
I was referred to a private job agency, JHP, and my experience just got worse.  I was by this stage becoming quite upset and angry by my experience but still felt that maybe it was not representative of the policy as a whole.

I was actually told by my support advisor that I was a bit of a “health & safety hazard”. It was obvious that JHP were still working on a job seeker allowance model.

At that time they certainly did not appear have anything in place to understand or help me with my individual barrier to work (mostly unconsciousness!).

They offered basic skills, basic computer work or a CV writing service. If these were all I needed then I would have been working already!

After some initial contact they seemed keen to emphasis the voluntary work I already do for AWP, our local mental health trust and encouraged me to put this down as self-employment. As I’m unpaid apart from occasional minimal expenses and coffee, this seemed unreasonable.

I have not heard from them more than a couple of times since and do feel let down; upset by the wasted opportunity and quite frankly the wasted public money.

I do believe that due to the “payment by results” model   I have become one of the many “parked” as a difficult-to-place-in-employment ESA client.

I think I had been living in a state of slight denial, as I had become increasingly aware of the iniquities of the welfare system and so called “reforms”.  I had used the anger this inspired get involved in social media and more mental health activities as and when my condition allowed. I heard many stories of people much worse off than myself and I forgot to worry about what was in store for me.

On the 12th March 2013 I received the dreaded brown envelope telling me that the new law (Welfare Reform Act, 2011) states I can only receive contributory ESA for 365 days - and mine were up on the 8th March 2013.

I was no longer entitled to this benefit. It is surely not beyond the ability of the DWP to send out these letters before payments actually stop or do they expect us to have a countdown diary?

The letter pointed out that if I live with someone who works 24 hours a week I will not qualify on income grounds.

Surely 24 hours at minimum wage would not be enough to be expected to support a disabled person as well as yourself? Who actually thought that bit of the policy out?  

My condition has not changed so therefore I presumably would still qualify on medical grounds. I feel incredibly let down by this process.

How can it be justifiable to remove my support after an arbitrary number of days decided by a politician not a doctor?

I feel devalued and quite despairing that I am now being judged merely on my ability to work conventionally. It feels like this policy is “one size fits all” and takes no consideration of the wide range of disabilities included in the apparently “fit to work with support” WRAG group.

It takes no account of the unpaid contributions I have made to society despite my disability.  

I have not recovered miraculously during this period or received any help to become ready for any sort of employment that might potentially support me - how can that be considered fair?  

My husband runs his own business. He is also bi-polar and at times experiences the mental health problems that go with this condition.

Together we manage to maintain a balance most of the time, but he has had to be hospitalised several times in the last few years when his symptoms got out of control.

He has never claimed benefit for this condition and when well, he pays a considerable amount of tax back into the economy. He must now manage his business, his own mental equilibrium and care for me when I’m unwell and can’t do much for myself.

When the phone call comes from the paramedics that I’ve had a seizure, he must drop everything or organise a rota of friends to step in when he can’t.  This he does willingly.

However added to this he is now totally financially responsible for me. In many ways I am lucky he is ok with this although I struggle with it very much as an individual. I feel it makes me dependant and not able to even contribute a little to my own living expenses.

I also worry it will add pressure on my husband’s mental state.  His condition makes him very functioning with a great need to achieve. I hope this will not tip the balance we work hard to achieve and result in a mental health reaction.

Quite frankly the DWP letter made me cry and I am not a crier. I generally cope well with most things life throws at me but admit I now feel very stressed and anxious.

I feel insecure and slightly out of my depth with what to do next.

I’m trying to be positive but have not slept well for the last few days and have experienced more seizures than normal for me. Surely this is not the “enabling” experience the government profess to want for those with long term health conditions?
This - like so many things - is very short sighted thinking. It may only result in moving cost from one budget to another. If I have more seizures, it will cost the NHS more. If my husband becomes more unwell as result of the additional pressure of caring for me, then the cost  will escalate still further as he will be unable to work and pay tax – possibly even needing more intensive mental health interventions.

And none of this even takes into account the non-financial but equally important cost to my self image as someone who is still living daily with a long term and quite frankly, disabling, condition.

I am quite resilient but do wonder about the effect it may have on my ability to continue to contribute to society in a positive way.

Surely this is not sensible policy? It seems to contradict the government mantra that “There is no health without mental health” and I feel strongly that the effect on many people will be profound and ultimately destructive.  

The only people who have benefitted from this at all as far as I can see are possibly JHP (and other private job agencies) being paid to provide a “not fit for purpose” service.

I recognise I am so much luckier than some as I don’t at the present time have to worry that it may take weeks to move my benefit from one type to another or how I will manage to live on no income in between.
I’m not destitute, but I do feel strongly that I represent a group of people who this policy has left feeling more disabled and devalued than ever before.

I am quite frankly afraid for both my future and the type of society we are creating for the most vulnerable in it. 

Saturday 23 March 2013

Ask Ed - So we did. Again.

Calm. Reasoneded. #Spoonies strike again. This time, although his answer is vague, Ed at least managed to get the name right and knows what's going on with the disability policy. It's progress Ed, but not as we know it......

The wonderful Steve Sumpter (latentexistence ) reminds Ed we haven't gone anywhere....And we want to KEEP DLA

Thursday 21 March 2013

Why won't DWP REALLY meet Spartacus?

Any of you who just watched the car-crash that was Esther McVey trying to undermine the credibility of the Spartacus network, might like to see the quote that upset ministers so much, they refuse to meet us and treat us like aggressive radicals.

The quote, picked out  from 100s of 1000s of words laid bare over the last 3 years. You can decide for yourselves if you think it justifies DWP not meeting leading disability campaigners.

"The WCA is a statement of political desperation. The process is reminiscent of the medical tribunals that returned shell shocked and badly wounded soldiers to duty in the first world war or the ‘KV-machine’, the medical commission the Nazis used in the second world war to play down wounds so that soldiers could be reclassified ‘fit for the Eastern front".
It is from a foreword to this report : by Peter Beresford OBE, BA Hons, PhD, AcSS, FRSA, Dip WPProfessor of Social Policy, Brunel University

Wednesday 20 March 2013

Yesterday's Labour Workfare Masssacre

This morning, like the night after Agincourt, lefties like me scan the bloody, burnt out social media #workfare battlefield in the hope of finding twitching Labour corpses. There are none. Like the French 600 years before, a few generals at the top of the pile made the fateful decision to crush the weak and exhausted. Like the French, they were shown exactly why that's often not a very good idea at all. 

In the three years since Labour have been in opposition, nothing has described their fate better than the welfare debate. With minds stuck in an ideology forged around a gleaming new millennium, welfare was a comforting Blairite hawk to offset the freer doves of education, international aid and health. 

Tough on povety, tough on the causes of poverty. It suited Purnell, and Murphy and Cooper as they forged their credentials as "centrists" and who knows? Future leaders? 

So the argument goes : "It's a no brainer. The public think everyone on welfare is scrounging. (Except them) The tougher we are on welfare, the more people in the "Middle" and the "Shires" and the "City" breathe easy at night. (As long as it's not pensioners and it doesn't affect them.) Combining a little social justice elsewhere, with a good dose of judgement and steel in welfare = the chance of a majority. 75% of the public support workfare. Therefore, supporting the government on this is a chance to show we are still tough on poverty, tough on the causes of poverty. The Daily Mail fall gasping at our feet, they raise a glass in the gentleman's clubs, and no-one will listen to the screams of the anguished or weak, well, because they're anguished and weak."

Some around the shadow cabinet now look uncomfortable, shift in their seats. This is at least progress. Some mention the change in the welfare narrative lately. Opinion polls shifting, disability becoming toxic for the Tories, the increased media interest and above all, that behemoth of opinion formers - social media. But the hawks give the doves a little slap about and logic prevails. 75% of everyone or about 1% of the active, gobby probably-gave-up-on-us-anyway-leftie-activist-Face-Tweeps??? 

As has happened so often before, but had been happening less lately, the hawks won the welfare Agincourt, and they took to the commons. 

We on Twitter and Facebook steeled ourselves. Defeat had been heavily trailed on the blogs and had met with the grim opposition of the archer who knows he may be amongst small and ragged numbers, but he has all the arrows and the mighty have none. 

And so it proved. If the Daily Mail or the BBC even noticed Labour's unprincipled stand yesterday, designed to get them picked for the election team, there is little evidence today on a quick dodge of budget fever. 

But on Social Media? 

Oh Agincourt,

"Those few, those happy few those band of brothers. 
For those yesterday who shed their blood may have been a brother. 
Be he ne'er so vile, election day may have gentled his condition and Englishmen abed may have held their front doors wide as any speaks, that canvassed late, upon election day!!!"

For the return of precisely zero centre ground, floating voting, Mail readers, Labour managed to enrage and alienate 10s of 1000s of active, passionate, left of centre, engaged, knowledgeable, informed, opinion formers who are read by journalists and opposition alike - not to mention their own families and friends. 

Life has changed since 2000. Politics has changed. The economy has changed beyond all recognition. Living standards have fallen. Corruption seems to stalk everywhere now that gossamer veneer of "success" has floated away. 

But most of all, "media" has changed. Numbers of papers sold are plummeting, news figures freefall by their side. 

And every day, social media takes over. Sure, not the majority, but the vanguard. And they are the ones who care and think and devise and solve and organise. Just like any world paradigm change, it is the few who lead you to safety not the many. 

Every time Labour remembers that, they are rewarded with just a little touch of Harry in the night - Murdoch and Leveson, Gas giants and Loan sharks their names in our mouths bitterly remembered. 

We appreciate their company, there in the breach. 

But every time they take what they know is the wrong decision on principle, the response is swift and horrific. 

I won't pain myself more by sifting through the "I'll never vote Labour again" tweets or sifting through the debris of torn up membership cards and broken hearts. 

But Labour squandered so much more yesterday on a battle they could never win, and all the while they go on frittering away principles and viable voters on the wind of a cruel popularity it cannot win, our cause be not just.

Monday 18 March 2013

We could stop the Bedroom Tax if we Chose to. Here's how

It's funny, isn't it. Every one of the policies we oppose are easily defeated.

Abolishing Disability Living Allowance, Severe Disability Premiums, the Independent Living Fund.
The Bedroom Tax, Council Tax Cuts, Slashing tax credits for disabled children.
The feared and hated Employment Support Allowance, limiting it to just one year, Workfare.
NHS "reform" press abuse, energy profiteers, loan sharks, slave wages

In just an hour or two, we could get rid of the lot.

There are 65 million of us and 650 of them. We just have to say "Erm, no thanks."

"We didn't vote for this, sorry, now off you go and think again."

It really is as easy as that. (Other countries do it all the time, we just seem to have forgotten why we fought for democracy in the first place)

So. At the end of the comment section on THIS post :
The last 4 or 5 comments (left by an "A Smith" - sorry efforts to trace unsuccessful **Update at end of post - if this has been posted elsewhere, I hope you'll forgive me) DO appear to give an excellent blueprint for destroying the Bedroom Tax.

Effectively, (and it IS vital you read the comments A Smith left if you want to really understand why I agree, I think this would work) councils will issue a "Benefit Decision Notice (BDM)" to say that you will be affected by the Bedroom Tax. 

The letter will describe how you can appeal. 

If everyone affected reads the comments A Smith left, writes back to their council asking them to explain/reconsider within 7 days

Then appeals within one month of the BDM

The system - and local council's ability to deal with the fallout - would come grinding to a halt. It simply could not function and would cost millions more than the tax will save. 

Again, to take part, it's crucial you read all of A Smith's shared reasoning and advice here in the comments thread, at the end :

So, a quick click on the link above and 10 minutes to read the comments. 

Then, a letter, with stamp, once you get your BDM sent immediately. 

A further letter requesting an appeal (there is even a template you can use left by A Smith) SENT WITHIN ONE MONTH OF ORIGINAL BDM

That's it. All there is to it.

If all 660,000 people affected objected, then asked to go to appeal, the system would collapse.

All for the sake of a 10 minute read and 2 letters.

DWP estimate 200,000 people will lose their homes from this policy. 440,000 of those affected have disabilities.

We can accept it passively, or like the poll tax, we can say "Actually, no, I don't think so"

That's it. All there is to it.

So if you agree, share this post. Send it to friends you think might be affected. Email it. Help any vulnerable friends you have to take the simple action. The Bedroom Tax is a BIG deal on social media but do we want to moan about it or stop it? If we want to stop it, share this post and act.

The only thing allowing ALL of these policies to go forward, is our acceptance.

Aha! Thanks to the wonders of twitter, we've found the original post. It was on SPeye here and author IS a housing advisor. 

Saturday 16 March 2013

The HUMAN story behind the Bedroom Tax

Alf's a binman and Laura works at the local village shop.

They moved into their nice two bedroom council house with their 2 young daughters 35 years ago.

Finally, they had a little security after years of living hand to mouth in an endless stream of bedsits and temporary housing. When they got the keys, after so much striving, they were told it was their home. They couldn't believe it was theirs. They paid their rent and took a breath for the first time in years.

Their new home was a 1950s two-bed, the red-brick houses ranged around a village green.

Alf never sits down. He's just one of those blokes that needs to be "on the go" every minute, fixing and helping and improving.

As soon as Alf got the keys (with permission of course) he ripped out the tired old local authority kitchen and put in a beautiful new one he made himself. He redecorated everywhere, fixed the broken floorboards and landscaped the garden. He even turned the outhouse shed into another bedroom so the girls wouldn't have to share once they grew and needed that bit of extra privacy. All from his own pocket & his own sweat. All from pride in his beautiful home.

After a few years, Alf and Laura looked into buying their home, hoping for a little future security for the girls.

However, (oh the irony) the council added £29,000 to the value of their home because Alf had done so much work to make it nice.

But Alf and Laura are "grafters", they didn't miss a beat. Didn't moan about fairness.

They just went on with bringing up their girls to be lovely women.

Alf could always be seen mowing everyone's lawns out the front. It was a council job really, but he liked to keep the road looking nice.

Every week he mowed the 130" lawns of the elderly couple who lived next door every week too and took away their rubbish if they couldn't manage. He never asked - he knew they'd only say no if he did - he just did whatever needed to be done, day by day. Always on the end of the phone or a quick knock away if the old man fell and his wife couldn't get him up. No fuss, no debt, just a neighbourly hand and a joke.

The girls fell from the trees they climbed on the green, learned to ride their bikes, snogged boyfriends in cars outside, stomped, cajoled and sulked their way into adulthood, as all teens must.

Now of course they've moved on. Found families of their own, gone to college. A credit to their parents in every possible way.

Now, Alf's retired, and the village shop has closed, leaving Laura with few other options for work in a small village. Because Alf is retired, but she is not, and as reward for all their work, for their striving, their care of others, their strength and their support, their community or the care and pride they took in their home, Alf and Laura must now move away or find £24 extra per week - over £100 a month.

They now have what are classed as two "spare" bedrooms - the girl's room (it will always be the girl's room to Alf and Laura) and the room Alf built so lovingly downstairs in the old coal store when they grew and  needed a little more privacy.

Yet shockingly, frighteningly, like a bolt from the blue, the government say they must now pay more or move. What if the girl's want to visit? What if there are grandchildren? Where will they sleep?

They don't have the extra money, and there's nowhere smaller to move to for 30 miles. The council has offered them a room in a B&B for "What might be a wait of several years I'm afraid" but that's the only help they can offer. And the B&B is 90 miles away in a totally different county.

Their home. Their precious home. With the kitchen Alf built from scratch, their cherry tree in the garden nearly ready to bear fruit. Their million melting memories of life and love and trying and failing, shattered. Just like that. The dream of a secure home to grow old in now the children are raised and safe, stripped away. The old couple next door left with no-one to rely on.

The grass un-mown, the street unloved, quiet without Alf's booming, teasing, compassion.


The government justify the Bedroom Tax with fairness. They say it isn't "fair" Alf and Laura should keep the now-occasionally-spare rooms in their family home. They say that somehow, they haven't paid for it ten times over in rent and love. They say they have no right to security, a place to call home and grow old in, or their memories.

Tomorrow, there is a national day of protest taking place up and down the country against the Bedroom Tax. (Incidentally, for the economically concerned, the Bedroom Tax will actually cost councils more than it will save.) There will almost certainly be one near you. PLEASE add your voice and stand up for Alf and Laura and three quarters of a million people just like them. Half a million of them will be disabled. 

Please click here : For more details on tomorrow's protests and how to get involved where you are. Let's share it and tweet it til our fingers bleed, then hope with everything we've got that the public decide this is their new Poll Tax.

#BedroomTax #WOWPetition 

**Names have been changed, but Alf & Laura are a real family. 

Friday 15 March 2013

Extraordinary! DWP Refuse Point Blank to engage with Spartacus

A few weeks ago, Michael Meacher MP (Labour) came to see me in hospital. I had emailed him following his remarkable Atos debate, (the first to see cross party condemnation of ESA or Employment Support Allowance) to point out how much of the failure was the fault of Atos, and how much was actually controlled by the DWP.

He was astonished and riveted as we talked and suggested there and then we arrange a meeting with Iain Duncan smith. Mr Meacher asked myself, Kaliya Franklin and Tom Greatrex (@tomgreatrexmp) another Labour MP who has opposed Work Capability Assessments (WCAs) )

The extraordinary account of what happens next should be seen by every last person in the country. The following from Michael Meacher's blog......

"DWP Ministers run frit of seeing delegation on Atos HealthcareMarch 15th, 2013

This week something happened which is without precedent in my 40 years of Parliamentary experience. On an issue of acute public importance where there had already been a Parliamentary debate revealing a total cross-party consensus solidly opposed to government policy, a Departmental minister then refused to see a delegation to discuss the matter further and to consider necessary changes in procedure. This issue, the work capability assessments carried out by Atos Healthcare, has been a top-line matter on the political agenda for many months now. I had therefore written to Iain Duncan Smith on 31 January asking him to receive a delegation from some of the key campaigning and analytical groups (I had, regrettably, to restrict this to three). I heard nothing for more than 5 weeks and therefore put down a Parliamentary Question on the Commons Order Paper asking when he proposed to answer my letter. As a result I got an immediate reply from Mark Hoban, the junior minister dealing with Atos matters, saying “my current diary requirements mean I am unable to accept your invitation at this time”. That is simply civil service-speak for a flat No. But I have taken the matter further.

I therefore waylaid Hoban in the lobbies after a vote and as soon as he saw me, he said immediately “I’m not seeing you”. I was taken aback at his aggressiveness and said “But you can’t possibly do this , this is a matter of the highest political importance and it’s your responsibility to talk to and listen to key disability organisations about this matter, however contentious it might be”. He simply replied blankly “I’m not seeing you”, and repeated it 3 0r 4 times. I kept on insisting ‘Why not?’ and finally he said “I’m not seeing Spartacus”. Again I was taken aback and asserted that in my view Spartacus had analysed hundreds of cases, prepared a very detailed and thoughtful analysis of the implications arising from these cases, and even if he disagreed strongly for whatever reasons it was his responsibility to meet them. To this he simply kept repeating “I’m not meeting Spartacus”.

After thinking over this exchange later I decided to apply for an Adjournment debate, not on Atos as such, but on ‘Ministers’ refusal to accept a delegation on Atos Healthcare’. I also went to see the Speaker about what I consider to be the unprecedented and wholly unreasonable and unacceptable behaviour of DWP ministers, and he listened carefully. I am now very pleased to say that I have obtained an Adjournment debate next Thursday, 21st, at 5pm in the Commons chamber. I intend to use this opportunity to bring this whole matter to a head."

So whatever happens guys, it looks like we have a date. Next Thursday? 5pm? I'll bring popcorn if you promise to tell the whole world before then. 

PLEASE Listen up Labour!!

Aaaaagh, the cocophony!! Just stop. Stop OK? I've got to put them all out of their misery!! My brain is bursting with anxt ridden left wing politicos and they're oh so earnest treatises on "What Labour Should Be"

From Black Labour to Red Labour and every colour of the spectrum in between, however counter-intuitive or obscure.

See, this is what happens when you give hundreds of remote Westminster thinky people 3 or 4 years to think! they forget what they were actually supposed to be thinking about in the first place.

Here's what people want from Labour. It's what they always wanted and absolutely nothing has changed today. It's universal, Labour or Conservative, Democrat or Republican, Socialista or Fascista. Now, stop squabbling and make it happen by 2015 please.

Left wing parties were born and flourished around the world because the public had a profound need of them. Why? (And here's the key to it all politicoes)

To be on their side.

When the Man demands more than they can give, we need to be there.

When he pays less than they need to live, year on year - not to exist but to live a little - we need to be there.

If a family who work worry about how to buy food and pay the rent, if they can never buy ice-creams at the beach or candy floss at the fair. If working isn't enough, we need to be there.

If their children are somehow excluded from the best education, whether through race, ability, creed, poverty or dogma, we promised to be there, to make it right.

Wherever the balance between them and the Man is too heavily weighed to exploitation, repression and humiliation, we promised to stand side by side and fight injustices with them, wherever they were proven. Remember?

Our finest hours - equal pay for women, Good Friday Agreement, Minimum Wage, exposing Murdoch and News International - were all because we stood up against the Man

The Man says can't. He says don't, he says I won't. We stand up to him and demand that he does and he must. Remember?

If the Man wants to charge a months wages for a damp, or dangerous home, we have to be there arguing for a fair rent.

We exist to be on the side of the People not the Man.

We want a world class NHS free at the point of use in the hands of the public many, not the private few.

That DOESN'T mean we aren't champions of business, innovators and creators. Far from it, stop being so silly. It's a contract - We help business to grow, but they never forget who pays for their luxuries.

Aspiration and Responsibility. Nothing wrong with that. As long as it works both ways. WE of all people, must NEVER forget it works both ways.

Am I talking about the "Working Class" or the "Squeezed Middle"? Stop that too. Stop it right now. ANYONE who might face exploitation at work, unsafe or unaffordable housing, shoddy healthcare, disability, old age or redundancy, need a party on their side. Against the Man. And that's every last one of us. Every one.

The Man is NOT the same thing as business. That's the most ridiculously lazy thinking in politics. Business is the lifeblood of recovery. I'm talking about the greedy, seedy, cheating, scrounging, cowboy Man. He can be mighty and international or he can be a lone shark, but forgetting - or worse, more shamefully - denying the Man exists has no place in a Labour Party

People want security at home. They want to spend quality time with their families. They want to work hard in jobs they enjoy, for employers who value them. They want a wage that pays the bills with just a little on top. To live, not to exist, free from fear or persecution. They want happiness and a sense of justice. They want freedom to roam and rest. They want food on the table in their old age and for every child to get an excellent education regardless of social background. They want to be cared for if they get sick and saved from the gutter if they don't recover. We all want dignity. We all want a fair balance. It isn't actually all that much is it?

Our job is to inspire the world as we show them how productive, how loyal and innovative a happy, healthy, educated, valued, public can be. Remember that guys? Remember the goal?

We just have to shut up and work out how we can be there, standing up against the Man. How can we inspire? How can we succeed, How can we be happy?

It's really not rocket science any of you. We just have to be there. The only protection from the Man

Thursday 14 March 2013

The Smoking Gun that shows the Tories lied about ALL of their Welfare intentions

And that's how it goes folks. Being me these days. Suddenly, out of the blue, someone sends me something so perfect, so shocking, so undeniable that my heart starts to beat faster.

So in an innocent little tweet from someone called Stephe Meloy sent me this wonderful, oh-so-detailed smoking gun. 

Entitled "A Contract for Equalities" with (oh delicious irony) a foreword by Theresa May (Yes that's right, she IS the now Home Secretary who wants to abolish Human Rights) it is a detailed pre-election plan of what the Conservatives will and will not do if they win power in the 2010 election.

Best of all, as @mrsblogs points out on Twitter a link to launch the document urges "if we fail to make progress in these areas & do not deliver on our side of the bargain, then vote us out in five years time"

Theresa May assures us in her intro that
"Just as we are determined to fight poverty, so we are determined to fight prejudice and discrimination wherever it exists
No group, no minority, will be left behind on the road to a better future."

Which gives you the tone of pure fantasy of the rest of the document.

Initially, we are told, no-one too ill to work should be forced to. 

"Central to our plans is a clear distinction between people who can’t work and those who can. of course, there are some people who due the nature of their disability or illness will not be able to work. These people who cannot work because of a disability or illness should never be forced   to work."
So far, 22,620 Employment and Support Allowance (ESA) claimants in the 
WRAG  (Work Related Activity Group  - people found to be severely sick or disabled and unfit for immediate work) have been sanctioned - some onto the government's work programme - under threat of losing their income between 1st June 2010 and 31st May 2012 

"We are very much focused on
helping all who are capable of work, not just
those who are nearest to the job market."
Recent evidence to parliament's Work & Pensions committee shows providers ARE favouring those easiest to help

Here's where it get's really interesting. They WON'T be scrapping Disability Living Allowance (DLA)
"As disabled people themselves are best placed to judge how to meet their care needs, we will preserve Disability Living Allowance and Attendance Allowance as cash benefits, which can be used to support family care and costs arising from their disability. "
Disability Living Allowance Mobility Component for blind people the current rules for people claiming the Higher Rate Mobility Component of Disability Living Allowance mean that it is only available to people who are physically unable to walk. This is unfair to visually impaired people as they too face mobility difficulties. While the law has now been altered to enable these rules to be changed, it is still not a reality for people with no useful sight for orientation purposes. We will implement this change to help support people with visual impairments to live more independently"

Expressing the desire to EXTEND a benefit, would certainly imply you had no intention of abolishing it the moment you came to power. The Conservatives announced a new benefit to replace it just weeks later

They go on to say they will "simplify the assessment process for accessing services" for disabled children,

they say they will "increase the number of health visitors by 4,200" and that they won't abolish Child Trust Funds or the top up payments for disabled children.

But here's the real killer punch at the end :

Under a section entitled Changing attitudes towards disabled people :
"A Conservative government will tackle the stigma and prejudice that still persists towards disabled people, particularly those with mental ill-health."
In fact, a misleading scrounger rhetoric, knowingly engineered and sustained by this government, has left millions of disabled people living in fear and allowed the single greatest attacks on disabled people in living memory. Note the HUGE spike in negative language about welfare claimants and the disabled from 2010 when this government came to power.

There are literally countless lies here, and I've only focussed on the very narrow subject of welfare reform and adult disability. Other groups are infinitely better qualified than me to discuss the many many other sections to this document. I'm sure they will want to when they see this utter fabrication from our current government.


Monday 11 March 2013

Oh, they're coming for you lads.

Simon, Phil, Dean and Harry all work.

Simon and Harry work together at a debt agency. They have to meet punishing targets, but the incentives are quite good and there's always overtime.

Simon, 24, is married with two small children. He's a grafter, does well, hit's his targets. Provides for his young family

Harry, 21 does his job, but has none of the pressures that Simon has. He plays rugby at weekends and spends every week of annual leave in Ibiza or Faliraki.

Phil works on the production line at a big Pharma company. The H&S laws, targets and ever demanding hunger of the production line make the job stressful, but his hourly rate beats everything his friends get. This massive, multinational company doesn't take people on any more. All of Phil's colleagues are on agency contracts, he doesn't remember anyone ever getting a permanent job.

Dean works for a Supermarket chain. Well, actually he works for 2 because neither take people for more than 16 hours and more. This gives Dean even fewer employment rights than the other 3, but he's 20 and lives with his Mum and Dad, so he never considers it. He rides his bike to both jobs to save a bit of cash.

"Benefits" are things scroungers claim. Lazy people who don't work like they do. Don't have to put up with the insulting boss or the gruelling early shift starts.

But it's not just those out of work who've been cheated. Not nearly. Oh sure, there are really no sickness benefits LEFT in the UK, but that's OK, because Simon, Harry, Dean and Phil are young and healthy and fit. So far, they haven't come across the Great Sickness Swindle.

It goes like this. :

Your Employer now has a set of rules

-Thou Shalt Not Take Time off work Ever.
-Thou Shalt not be away from your desk/line/station Ever.
-Thou Shalt Not Be Late
-Thou Shalt Not Be Ill or Have any Accidents

Now, Simon, Harry, Phil and Dean aren't that unlucky - not even averagely unlucky really. But they ARE all vulnerable workers. And as such, the companies that employ them, pretty much treat them how they like.

Simon simply got the real flu that was going around and a few months later, got salmonella from a curry night.

He missed targets in two months out of 7. The company put him on a stage 3 disciplinary ( the highest) One more day sick that year and he'd be fired. A few weeks later, his wife was sick with the flu too and Simon had to take a day off to arrange childcare and look after them all. He lost his job.

Harry fractured his pelvis playing rugby one weekend. He was laid up for 3 months and his company said they couldn't keep his position open.

Dean walked out of his second job one evening to find his bike mangled to a pile of twisted metal, run over by a hasty shopper. He couldn't afford another so his Dad started dropping him to work. On the fourth time his Dad got him there late (he was never late on his bike in three years) they "let him go," just like that.

Phil's Big Pharma company aren't doing too well through the downturn. They've cut back on the particular products Phil makes on his line. Now he only gets work when the company say, held in a pattern with 35 people for 23 jobs, waiting every night to see if he's one of the guys who gets a call.

But when they needed help, there was nothing left any more. Harry couldn't claim sickness benefits while his pelvis healed, he couldn't even apply for the first three months. 

Simon got no help with his new mortgage or his new children or his new wife. He went out every day armed with CVs but couldn't get another job. There were 100 kids fresh out of school who were younger and cheaper than Simon. 

Phil couldn't earn enough to pay his rent, but he didn't qualify for any housing benefit or income support because he managed to scrape together the few hours that he did. Because he kept working, kept "doing the right thing" 

Dean got depression. He lost all his confidence, feared another company that would "just let him go" however hard he worked, however far he cycled. He couldn't get any treatment from his GP - the wait for counselling was months. He drifted further and further down. But he can't get ESA (Employment Support Allowance or sickness benefits) either. He had an assessment but they concluded he was "too well dressed to be depressed" and said he didn't qualify. He's stuck at home with his Mum and Dad and none of the access to job support and healthcare he needs. 

THIS is why #ESAendgame matters to everyone. Your companies will rarely support you if you fall any longer. Especially if you're young. The state will no longer support you if you fall - and the fall can be as simple as a few months of not great luck - you'll find there's no legal aid if you are treated unfairly when you try to claim support, no income while you wait to hear if you can appeal. No income for the first three months. No mortgage relief payments, no "dole".

If things are more serious than for our boys, if you find yourself permanently disabled or caring for someone you love full time, you will be horrified by the skeleton of support left - if you manage to secure any at all.

We have an unpredictable labour market with high unemployment and little demand for workers. It's a buyers market. We have too many part time jobs with few employment rights and wages have been stagnating for years. Sickness procedures have been tightened to an utterly illogical degree and most of the safety nets have been removed - Good Lord, George Osborne even wanted to buy what employment rights you had left!! Something aimed at young men just like our Harry and Phil, Dean and Simon.

Having an efficient, functioning, fair sickness benefit system is a vital building block of a civilised society. Without one we step back 100 years. It matters to EVERYONE that we have one that works for the day your luck might change. Just like Karen

Saturday 9 March 2013

Today's #ESAendgame request - IMPORTANT

#ESAendgame means exactly what it says.

It;s time the people spoke. With one voice and said "Enough is Enough"

We have the evidence - we've had it for years.

People are desperate and our politicians - of all parties - have been too slow to make improvements that would have saved lives and untold human suffering.

We will not wait for another review - we've had 4 official reviews - they've all said the same thing. ESA needs comprehensive change and we are not prepared to wait any longer. If the political system and mainstream media insist on failing us, if they will stand by while this misery is carried out behind a veil of lies, then we MUST act. And we must act NOW. Together.

The dazzling success of The Starting Gun led 450 people to say what they believe is wrong with ESA. What needs fixing. These will form the basis of our demands. (More to come Monday)

Today, I want people to say what ESA SHOULD do. How it should work. What would you like to see change? How could ESA and WCAs be better for you? How can we make them more efficient? Where can we save money? 

Where The Starting Gun was negative, let's be positive. We know what works and what doesn't - we know what needs to change. 

So everyone, sick or healthy, disabled or more able, mentally ill, carers, people with learning difficulties, people with fluctuating conditions and terminal disease, charities, unions.

PLEASE tell us in the comment thread what you need ESA to be and how it should work. What you believe is right and just in a compassionate, progressive society.

If you need a little inspiration, go to the #ESAedngame hashtag on twitter, you'll see some people started to give their thoughts last night.

Again, please can I ask you to stick to one sentence where possible and leave your 
-Name (or psudonym/social media name) 
-And the one thing you most want to change about ESA This is vital for the success our campaign.

This project will ONLY work if you join in. thousands of us are unhappy with ESA, the injustice, the harrassment, the scapegoating, the fear. The ONLY way ordinary people like us can change things is to show that we have a voic. 30, 50, 100 responses won't do. Thousands of us need to tell the country what we want, what we need. 

Please, join us, leave comments about what change we need from ESA, share, tweet and support. 

YOU will make this work. 

Alone we Whisper, Together we Shout. 


If you;re "in" please sign Thank you 

PLEASE, RT, Share and encourage 

Friday 8 March 2013

If I was a delegate at LibDem conference, I'd....

Lib Dem conference gathering again eh?

A conference. That's nice. They'll all be having them, a little political animation in an otherwise lifeless, twitching Westminster corpse. Bright lights. Warm words. Scripted battlelines.

And small food with warm wine.

Nothing will happen, nothing will really be said but a million air-puff words.

So LibDems, if I had a lanyard like you, and Sky News in the lobby and the world's cameras a heartbeat away, I'd get a box. I'd take it somewhere everyone has to pass and make a quiet, heartfelt speech. The quieter I started, the more would strain to hear.

And I'd say

"What are we doing friends?

Stop! Just for a minute! I want to speak to the you that signed the membership forms.

I want to speak to the teenager you were, delivering leaflets in the rain.

I want to speak to the student who debated with fire in the union bar.

I want to say pause here now, just for a second.

Those set phrases and pyramid facts - constructions of wonder - let them all go. Be you. Just for a few minutes, here with me now, be you.

We focus on our wins - and rightly so - at Picasso angles, never to turn to the blue, the grey.

And every night, when the lights go off, are they enough? Because they HAVE to be enough.

Every day, the compromise becomes a loan. This compromise cannot be equal, but it must be fair, or it is debt. And we are falling heavier in debt every day.

They loan us freedom from tax for millions of those who most need our help, but in return they take the heavy interest of security from our disabled constituents and their carers.

They loan us a vote on electoral reform, but they demand chaos in our NHS, a destructive economic policy most of us didn't support and secret courts.

They loan us Lord's reform, but then they foreclose on that debt completely, without reason or recompense.

Are we SURE? Can we live with the debt or are the payments just too high.

We ALL know why we're here. We ALL know what we came here to achieve.

We all know the well rehearsed lines to explain beliefs held so deeply, cherished so dear.

But always in coalition and compromise there has to be a reckoning and if the balance tips too far we must know how to recognise it.

If I stand in a room with students and pensioners, workers and those not in work, disabled people and those more able, doctors, nurses, bankers, priests, parents can I still say, with my head high and my eyes clear that the compromise is right? That it's enough?"

I'd beg them to throw away their set lines and speak the words their hearts believe - just while conference is on. Can you IMAGINE the impact?

Update : I should have known the AMAZING Mr Potter would be the one. The one with the lanyard and the belly full of truth and fire. 
Oh, he'll get in trouble for this post. I've been where he is and I feel his pain. But he's there everyone. All the while there are still George Potters at conference, we're going to be OK 

Thursday 7 March 2013

You in for today's little task? #ESAendgame

*Waves at all the #ESAendgame people blushes a little there are so many, clears throat*

So, most of the public don't have a clue what ESA or WCAs are. For the next few weeks we need to dig out and share some of the best ESA stories or TV programmes or radio debates we remember and share them around. Everywhere.

Please post your favourite links in the comment thread. **IF LINK IS LONG PLEASE INDICATE WHERE IN ARTICLE INFO IS** 

Again if you can please leave your 

Name (or Twitter/Facebook/Pseudonym) &

Here's a few tips :

-Always use the full Employment and Support Allowance (ESA) at first so people start to learn what it is. Same with WCAs

-Remember a particualar time Graying got shown for the liar he is? 
-Remember punching the air when the Mail or Telegraph or somewhere actually wrote something fair about ESA? 
-Remember a statistic that literally blew your head off?
-Remember the first time you read something so clear, a huge penny dropped?

-Dig them out and share share share. At work, online, on twitter
-Be prepared to be patient at first if people ask questions. They almost certainly won't be very sympathetic at first, but that's what they've been told, most people aren't unkind.
-Absolutely never rise to trolls under any circumstances. Stay polite and informative.

We need people to really start thinking about ESA, understanding what it is and what we're actually so afraid of and cross about. Print some off and scatter them round at work, in the hairdresser, on noticeboards - nothing is silly.

Time to fightback with facts!!!!

#ESAendgame Beyond Day 1

The launch of #ESAendgame yesterday was simply remarkable.

Nearly 9,000 people have read about #ESAendgame in under 24 hours. 

It was the most shared and read article online in the UK yesterday. (Ebuzzing News)

318 people have taken part in our consultation "What Most Needs to Change about Employment and Support Allowance (ESA) and Why" In DWP terms, 318 responses is very large. But I want 1,000 - 2,000 We MUST show that we truly represent the experiences and opinions of sick and disabled people and their carers. A consultation here with thousands of comments is a VERY powerful tool in anything we compile.

PLEASE keep sharing any of the consultation posts like yesterday
whenever you can and encourage people to comment - you don't have to be sick or disabled or a carer to understand that ESA is inhumane and want to stand up for justice. I can't stress enough that #ESAendgame is open to EVERYONE. In fact, the more non-disabled people, DPOs, charities, MPs and "influential politicoes" that contribute and who join with us, the more credible our response and more frightening for Government. 

It is ONLY unity that will convince the government to think again, but with unions, the TUC, disability groups, political sites, everyday blogs on shopping and cooking and fishing, charities and politicians ALL talking about why ESA must be changed NOW we CAN win. But every last one of us has to join. Please, cross-post everything - you don't have to ask, just link back so we can estimate our reach.

So far, the issues people believe to change about the WCA and ESA RIGHT NOW (In order of most mentions) are :

Fear and Dread caused by the process
Constant Reassessment
The One Year Time Limit
Worsens Mental Health conditions
Continuing scrounger Rhetoric and made to feel dishonest and worthless
The Error rate and inaccuracies on forms and in decisions
Continuing inability to deal with Mental Health conditions
Makes symptoms/illnesses worse. 
Assessments are inhumane
The assessment ignores own Drs/medical evidence
Removing ESA indefinitely for reconsiderations before appeal - fear of no income
Fear of the Brown Envelope
WCA is designed to make you fail
The Assessors are not appropriate to the condition
Only 30 days to return the ESA50 application form
The form is to hard to fill in and takes enormous emotional toll
It's just a tick box system that gets 1 in 6 decisions wrong. LIMA must go
The Work Capability Assessment (WCA) is not a "real life test", not about what you can do in a real job
Poverty casued by out of control process
People dying days after being found "Fit For Work" - in ever increasing numbers
**TRIGGER** ESA process making some suicidal
A growing number of people are "Fit to Work" according top Atos, unfit according to JCP and stuck in limbo
Changes are purely ideological and not based on evidence
The process is clogged up and taking far far too long
Many Disability Testing Centres are still inaccessible
Lies on forms
Fear for the future of dependants without carers
The descriptors do not apply to many conditions
Money taxpayer is paying for this failure
Forcing abuse victims to discuss abuse with stranger

I think that's a pretty good start as mini-sections of a report to present to the public eh? Your quotes explaining each one and adding human warmth? 

PLEASE we need new people to join every day and leave comments. 

Name (or twitter/Facebook/pseudonym)
1 line on what needs to change NOW about ESA

And please keep sharing every day and using #ESAendgame on twitter when discussing ESA. Let's keep building momentum

**PLEASE do remember to leave your constituency. It's not an address, but will be SO helpful later when we want to contact every MP and peer in the country to already have people who can send a quick email or two in every constituency. 

Ekklesia wrote this wonderful article with a selection if #ESAendgame tweets, it's very powerful and another GREAT article to share.

As always, if you care about this, please sign WOW petition 

Wednesday 6 March 2013

ESA SOS - The Starting Gun

In a few weeks, I'm going to arrange for some very significant stories to break in the very mainstream press about ESA.

I've been collecting them for about 6 months and if there's any justice left at all, they will kill ESA once and for all.

They will totally change your perception of ESA and WCAs

We need a Spartacus 2 and as you all know, I've been sick as a dog.

Today is stage one. If you're in, please leave your Name and user name on twitter or Facebook (Feel free to only provide the latter if you like to keep your anonymity a little) and Constituency

You don't have to be claiming ESA or even sick or disabled or a carer. This is a mutual shame, a shared disgrace. We must ALL show politicians of all parties, the public are NOT OK with this. 

There will be a task most days, so please keep watching my blog. 

Today, I would like something very specific. What is the worst thing, for you about ESA/WCAs? I need you to simply leave a one line answer if possible, ie "1 Year Time Limit - It totally undermines any contributory principle"

The most popular of these "subjects" will make up every short section of the new report.

Share this post everywhere you can. This will be the start of our biggest fightback. EVERYONE will have to give this everything if it is to work. We need hundreds of responses to every request to make this a truly representative report from disabled people, by disabled people. The more join, the more powerful our voice and the more impact any final work will have.

What's more, by crowdsourcing our information and skills, believe me, we have 100 times the resources and ability of the DWP.

I have an awesome team in place - they produced #esaSOS in just 4 days. Hard though it will be, PLEASE, I'm still very weak and CAN'T read endless comments or pages and pages of Hansard or reports. Make this easy for me by keeping as close to the brief each day as you possibly can. I WILL cover everything, nothing will get missed. I'll ask the question you're itching to comment on, honest, but if we do it this way, I can delegate very much and empower you all to know exactly what we need.

Even a shadow of division will see us fail. This will need every group, every campaigner, every supporter, no matter how radical or moderate, how powerful or unknown, every journalist that has supported us, every politician who is fully signed up to our arguments.

If you have a prominent welfare/disability/political voice, website or other outlet, please cross post this from me. 

So today, in the comment thread below please leave :

Name and social media name/s (or just the latter if more comfortable)
The WORST thing for you about ESA/WCAs in one line. 

****ESA is the most terrible failure of any developed nation for a very long time. The reasons are numerous and utterly undeniable. The government has failed to implement Harrington with any commitment and is actively increasing the rate at which vulnerable people face a failing and unfair test. We have engaged with a democratic process that has failed us at every stage. We have no choice left but to stop this ourselves. Over 100,000 people now face some kind of ESA assessment every MONTH. We can't afford to wait. ****

Enough is Enough. 

From today, please use the hashtag #ESAendgame in all your tweets. We must build awareness and create an army or support and dissemination. 

"Alone we Whisper, Together we Shout"

Tuesday 5 March 2013

Counting Blessings

I just found this little post I didn't publish before. I'm home now, but.....sniffle

So finally, after months of misery, I'm having my op later today.

I've been away from my children for 8 out of the last 12 weeks. I have a physical ache where they should be. Every minute of every day I hear their voices, see their faces wonder who is folding them in their arms when they're sad or hurt. I know it isn't me and the pain roars. As I stayed home last night, they walked into my bedroom cautiously as though their faces were lit by Xmas. Is she really here?

I can't wait to make a nice warm stew on a chilly spring day and watch them mop up every drop with bread I cut to shape like clouds

I want to pick them up from school. I want it to be MY face that lights up their world at the end of the day. I want to pretend to give in over staying at the park and just for once, say yes to the ice cream van.

Tory Doubt - Rare but Potent

So, here's a funny thing.

A while ago some Tory MPs got in touch. A few of them. They were distinctly uncomfortable about the direction welfare "reform" was taking. Some had disabled family members. Contrary to popular myth, some simply cared a bit. Some were just increasingly nervous about the anguish filled sacks of misery thumping into their inboxes weekly. In many constituencies (the Tory shires are not immune, I assure you) Majority - DLA/ESA claimant rate = Political unemployment in 2015. Whether naked ambition or genuine compassion, it was getting harder and harder to dismiss me as a shrill leftie harpie when the evidence was right in front of their noses day after day.

Then there was a list of more Tory names. More good men and women, unprepared to allow evil to flourish by doing nothing.

Then the Atos debate in which every speaker - Labour, Lib AND Tory denounced the mess that is ESA and WCAs.

Then they backed off on PIP. For over 70% of cases, nothing will be done until after 2015. Rumour trickled my way that parades of "genuinely disabled" people stripped of their means of eating and heating their homes was not popular as a pre-election image. I'd add more, but my fear of breaking hard won confidences forbids it.

At the same time, we in the know who pay unhealthy attention to everything welfare, started to notice very odd behaviour from IDS himself. Well, odder, to be scrupulously accurate. Never a man fully in control of his temper or nerves, he got progressively twitchier, ever less reasonable, less rational. He lost his temper even more, (famously with Owen Jones on Question Time) lost the "Look, this is for everyone's good" appearance of sanity of 2010 and started behaving more and more irrationally. Shouting in debates, insisting figures were accurate when interviewers proved conclusively they were not, rudely laughing and chatting through committees and debates.

McVey, Hoban and even Freud The Dark Lord himself got more.... compromising. (Just typing that seemed surreal)

But on the outside, the Tories seemed MORE right wing, MORE determined the poor would pay ever greater slices of the MessleftbyLabourThatWasn'tReally. Hammond, the defence secretary, called for more welfare cuts, Osborne insisted on a further 10 billion, even Cameron wasn't above a little workhouse-rhetoric in major speeches to sound Grrrrringly rootin-tootin Tory.

So we all see a Euro obsessed, immigration befuddled, irritated, hating-everything, out-of-touch Tory party waiting with fangs bared to rip Cameron to shreds sometime around November.

But quiet little mutterings suggest this is only a minority - if a rabid and vocal one, backed by the equally rabid right wing press.. Somewhere in there is a fabled, humanised form of the Tory species and they are tying Cameron in a whole set of chains of their own. Chains to the left of him, jokers to the right.... Refusing further welfare cuts, worrying enormously about the NHS car crash playing out, utterly sick of Plan A and wondering ever more vocally how the boy with the 2:2 in History came to run the economy.

Crucially, they often hold the marginal seats. Those requiring more nuance to win. No safe Witney's and Hogwash-Under-Jam. Conservatives forced blinking into at least the fringes of the real world. In power terms, the right wingers might think they hold all the cards but Thou Shalt Not Lose Marginals is an incredibly strong political force.

Either way, I recommend popcorn and watching very carefully how this unfolds. Like the early nineties, I can only really see rifts and destruction. Cameron has killed any last vestiges of nerves the left may have about his "leadership skills" - he seems to have almost actively spent 3 years proving he has none.

Even most of the main players are the same. IDS is on the edge, the '22 committee are restless, the slightly more modern, slightly less ridiculous are nervous, UKIP are snapping at their heels. I predict by about 5th of November, we can simply light the blue touch paper and stand well clear.

Monday 4 March 2013

NHS - You Can't Hide from This reality Dave

Finally. I'm writing something. On my blog.

It's been a long, long road. I've been stupidly unwell since....September? October? You all probably remember better than I do. Considering the failed operation at The Other Place last May, and the non-recovery that followed, I suppose we can probably say I've been stuck in bed with a sick bowl and a head full of opiates since about January 2012.

This is not "Sick Girl situation normal" for me when I get this bad. Things stop working. My legs stubbornly refuse to carry me about. My opiate infused bloodstream resolutely refuses to let me interact. With anyone. Can't cuddle my husband, can't speak to my kids and DEFINITELY can't pick up the phone. Not under any circumstances. It rings and my blood flushes cold with terror. I watch it, insistently bringing away on the duvet cover, jumping and twitching with pushy challenges and I let it ring out. Even when I knew my Dad was dying, I still couldn't pick up the phone. Friends visit and I beg Dave in tears not to let them in my room. The room that has become my world. The room that smells of sickness and sterility and decay. The four walls that contain me just as securely as any prison. The room that becomes more peppered with aids as the weeks go by. Suddenly a wheelchair here, a commode there, a sharps bin or six, as reality forces my ever constant stubbornness into submission.

And then hospital. When the spasms of vomiting ripped muscles, left me delirious with dehydration and malnutrition, when the pain shot through "Home-levels" of opiates it was time. Oh God that time. Time to say goodbye to my kids. Each time, with no idea if I'd see them again. Time to say goodbye to freedom and independence and comfort and love, such as they'd become in my narrow existence, in exchange for rigidity and institutionalisation and - if I was lucky - efficient salvation. If I was unlucky, judgement, frustration, pain and fear. Loneliness and battles with the very people supposed to care for me.

The first ward I was on (for four whole weeks) was great. My own room, views of London from picture windows that I could dream my way into for hours on end. Kind staff - indeed some beyond kind, some the angels we resolutely insist on believing make up 100% of of our NHS. Some became friends, which is the very highest accolade I can give. A few hiccups but never intentional. And all the while the chilling, horror-film-creeping realisation that The Other Place had not been right. The patient care had been bullying and cruel and dangerous for most of the 18 years I'd lived out my life in their "care".

I think the biggest change - and one I couldn't really get used to over the whole 10 weeks I spent in their care - was they didn't treat me like a junkie. they treated me like a person with a terrible illness in pain. I justified, and worried, hoped and waited needlessly. They came. Every time. With pain relief. When I needed it. No-one tried to take it away. Or reduce it.

The 2nd stay brought a dodgy sister. We didn't get on. It didn't go well. the ward lacked the compassion and calm of the previous one.

If the NHS let me down anywhere this time it was that good old chestnut - communication. The medics took 3 or 4 weeks to decide I needed surgery. They didn't read my notes or speak to anyone at The Other Place. They bought in the surgeons. Who took another 3 or 4 weeks to decide I needed surgery. They didn't read my notes or speak to anyone at The Other Place either. They couldn't get it together to communicate and push for an operation date. Xmas came and went, I got skinnier and skinnier. My boys started to forget who Mummy was. Just that pale, gaunt hologram of Mum lying in the bed for kisses goodnight. Like a Victorian father, remote and removed. My husband became my carer, never my lover. They became self sufficient as a family, without me. Something that gave relief and pain in equal measure.

Quietly and calmly I repeated, over and over again, "I need surgery", "I need surgery" like the insistent hum of train on tracks - unheard, but there, under all of the rest of the noise and beeps.

Finally in January, 5 stone 10, nearly, dead, unable to walk at all, having eaten or drunk nothing for about 2 weeks, the surgeon hung his head at my out patients appointment and said "I think it's an understatement to say we've left you too long."

He admitted me, set up a feed by central line, set a definite date for surgery and salvation was in sight.

Again, I was in a lovely ward. The nurses really cared but make no mistake - listen up Mr Cameron, Mr Hunt, Mr Lansley - THERE WERE NOT ENOUGH OF THEM. There's nowhere to hide. I'm not Polly Toynbee writing in the Guardian or Benedict Brogan in the Telegraph. I'M A PATIENT. Few will have my insight or experience.

Compared to 2007, wards (and let's not forget, this is in one of the best teaching hospitals in the country with a real emphasis on patient care) are horribly, dangerously and miserably short staffed. BECAUSE THEY CAN'T AFFORD TO PAY THEM MR CAMERON.

Oh, I've seen the political football nonsense you are all playing. The Express, Mr Hunt, they are trying to justify your ridiculous NHS sell off with stories of poor patient care. The Express and Mr O'Flynn rallying to the cause, talk of patients discharged with dehydration or malnutrition.



Oh, you can go on about "cutting management waste" or "streamlining" but as you knew very well, we already had one of the most efficient health services in the world. You can hide behind your statistics, you can obfuscate about "no real term cuts" but you know as well as I do, the NHS needs 6% extra per year to survive. And it's not getting it. AND you're insisting they restructure from top to bottom at the same time.

So this is my experience, as a patient : Some of the deaths will be down to cruelty. Bad practice leads to bullying and cruelty. A ward or indeed a hospital, out of control, that has lost sight of the patients it is there to serve will kill people. Just as they did in Mid Staffs. But let's not kid ourselves any longer - it's happening up and down the country. Until we face this and accept we are only "angels" under the right circumstances, people will die. Lots of them. Our Mums and Dads and Sons and Daughters and Babies and Wives and Husbands will die. Say it again. They'll die. Needlessly and in lonely, desperate misery.

But more will die from cuts. And the trauma will be double. Because the staff who are left WILL care and will simply be unable to do the jobs of four or five. They will go home, every night, knowing they left a patient in pain. Knowing they left them hungry. Knowing they left them lying in their own filth or dehydrated or without vital feeds or medicines. Perhaps their blood slowly seeping away onto the floor, left for a night shift who fight all night, 2 staff short to save a life and never get a chance to staunch the flow. Dying quietly or dying dramatically, we'll all be dying.

Where there should have been 4 trained staff on every night - and several Healthcare Assistants, (HCAs) there were invariably 2 - and one HCA or none. They were usually bank nurses and just didn't have either the consistency or the care to do a good job.

The best nurses were staying 2, 3, 4 hours after every shift just to get things done.

Say what you like Mr Cameron and Mr Hunt, these deaths will be your fault. Every one will be on your conscience. Hide behind your statistics and your lies, but I'll be the patient, in the bed, watching the play unfold. I'll be the one talking to nurses in tears of frustration and exhaustion at 3 am. I'll be the one suffering in pain without a nurse available to bring my meds. I'll be the one watching the old lady opposite waste away because no-one has time to hold her cup.

But you won't need to use the NHS will you Mr Cameron? So you won't care. It's for "them" not "us" as remote and alien to you as pasties and council houses. But you used to didn't you Dave? You used to need the NHS? Because for acute, specialist care, they are the best. All of your private, boutique hospitals can't provide that care can they Dave? At 3am when your child stops breathing and you rush to salvation in a wail of blue lights and terror?

That you would so easily forget your own experiences and deny future parents the same excellence is your greatest shame of all.

If you don't want this ridiculous privatisation-through-stealth, please sign the 38 Degrees petition