Monday 28 February 2011

Cameron the Naive-l

Last week, my brilliant friend Eoin Clarke wrote this about Cameron's ill-fated Egyptian visit. Now Eoin is scrupulously fair, non-partisan to a fault. You might notice he doesn't even mention the list of arms dealers he took with him. He does however, point out that :

 "Cameron is meeting all the opposition parties except for the most popular, Muslim Brotherhood. In rather explicit terms he is, rather naively the poor sod, gifting the Muslim Brotherhood a propaganda coup."

I'm not the only commentator today asking the question : Is Cameron just hopelessly naive? Or is there much more to it than that?

When he promised that,
 "any cabinet minister … who comes to me and says 'Here are my plans' and they involve frontline reductions, they'll be sent straight back to their department to go away and think again"

Was he really naive enough not to understand that you can't cut £83 billion - an amount never attempted before - without frontline cuts? 

When he promised that 

"Our plans involve cutting wasteful spending....our plans don't involve an increase in VAT
or "I wouldn't change child benefit, I wouldn't means test it, I don't think that's a good idea"
or "I Absolutely support the EMAs"
or"I will lead the greenest government ever"
or "It is sick and frankly disgusting to say we will end the two week cancer guarantee"

Could he possibly have meant all of those things at the time?

When he promised more midwives was he really naive enough to believe that he could deliver them?

When Lansley came to him with his NHS re-organisation plans, was he really naive enough to think that promising there would be "No more top-down re-organisation of the NHS" would be forgotten?

When Gove came to him and suggested scrapping the Building Schools for the Future fund, was he truly  naive enough not to realise that there would be massive uproar resulting in legal challenges?

When councils were told they must slash their budgets by 27%, was he really naive enough to think that this could be achieved through efficiency savings? Had he honestly come to believe his own rhetoric to the point where he thought this would not result in cuts to the very Big Society voluntary sector he hoped to nurture and develop? Really?

Perhaps most incredible of all, when he spoke of his personal experiences of disability through his son Ivan, when he explained how amazing the NHS had been, when he claimed to understand the lives of the millions of carers around the country in speeches like this :

"This is the support, trust and respect that parents of those with disabilities deserve. Because we can never forget what an amazing job they do. Just consider what it would mean if the army of parents and carers in this country gave up, packed up, said they couldn't cope any more. The financial cost of looking after those children would be immense"

Did he really believe his own words?  
Did he honestly think that he could make life better for the sick, the disabled and NHS patients at the same time as cutting housing benefit, freezing all other benefits, time limiting ESA, abolishing the Independent Living Fund, taking over 60% of sick or disabled people off ESA and 20% off DLA, limiting the Access to Work programme and removing mobility payments from adults in residential care?
Did he honestly not realise that this particular piece of touchy-feely Cameroonianism would come back to haunt him?   

There's a serious question here and neither answer is reassuring. Either he is the most bumbling, out-of-touch, naive, clueless, hapless politician ever to make it to the role of Prime Minister, or he is a cruel, opportunistic, liar who repeatedly and consistently said anything at all to get elected.

Eoin leans towards naive, I, of course, believe he is made of purest evil, but either way, it does not bode at all well for a country facing its toughest challenges for a generation.  

Sunday 27 February 2011

How the Tory Press catch their Prey

By popular demand, here's a little polling day story from the election last May. It was the moment I realised just how powerful Murdoch was and how complete the whitewash of the right wing press.

I had drawn the shortest of short straws and was allocated a polling station in Whitehawk to man for a few hours. Whitehawk is a sprawling estate in Brighton - a town with few pockets of inequality in which to cram its unfortunate. Acres of social housing and gloomy deprivation should be natural Labour territory but it was quiet - Marie Celeste quiet. I knew within a few minutes that this didn't bode well for Labour nationally.

Still, I sat in the sunshine with my red rosette (no other party bothered to send a representative) and chatted pleasantly with those who did show up.  I love the carnival atmosphere and sense of community spirit of election day. I love that spark of empowerment people give off as they exercise their democratic right.

Once election day dawns, you are totally forbidden from canvassing support at the polling station. You may not even have the word "Labour" in the centre of your rosette - though it may be red!! If anyone asks you how to vote or why they should vote for your party, you may not answer. If they ask you about specific policies, it's too late to explain your stance. You're simply a friendly face collecting voter numbers to match with the electoral register.

Usually, people don't linger. They march into the polling station, vote and march out, often handing their voter cards to the representative of the party they support with a knowing nod or smile, but by this stage, they are resolute. They've made their decision.

Not so in Whitehawk on May 6th 2010. A steady stream of voters lingered to chat, asked me about the economy or immigration or health and I wriggled with frustration as I explained that I couldn't answer. No-one was rude; there was no sense of disgust at my party, but there was a confusion that I'd never come across before.

Just after lunch, an elderly gentleman walked towards me and hesitated before going in to vote. He was neatly dressed in the way ex-military men tend to be. He asked me what to do, a question I'd never been asked before. I smiled and explained I couldn't advise him, and he sighed before going inside.

A few minutes later, he emerged, but seemed agitated and upset. He started to chat, the words tumbling out in confusion. He told me he'd always been a "Labour man," never voted anything else. He talked about his admiration for Gordon Brown "A good man" who'd kept inflation and interest rates low. He told me how much he valued the free TV licence and his Winter Fuel Payment. He was informed and articulate but he got more and more upset as he spoke.

After a few minutes, I was horrified to see tears in his eyes. I grew up alongside a hundred proud men like him - I know them well. Suddenly he blurted "I went Blue - did I do the right thing?" He was appealing to me, desperate and miserable.

My heart went out to him, but it was too late to show my frustration, too late to make a difference, so I struggled to find a reassuring phrase. "I'm sure it will all be for the best" was all I could come up with. By this stage though, I just had to ask him why? Unsure if even that was allowed under the strict, election day rules.

He actually choked on a sob as he answered - a sob!! "Well, the Sun said to vote for Cameron didn't they? They're a working man's paper - they wouldn't have told us to vote Blue if Cameron was going to let us down?" By now it wasn't a question, it was a plea. I nodded and smiled reassuringly, but inside, I was furious. How dare a paper for the "working man" hold such power? How dare they decide the outcome of elections? How dare they tell their readers to vote for a party who almost certainly would not represent them or stand up for their rights?

Yet again, I knew, it would be "the Sun wot won it" (along with its playmates, the Mail, the Telegraph, The Times, The News of the World, The Express and Sky.) and yet again, I knew that the very people they handed to Cameron on a plate would be the very ones to suffer the most under a Conservative government. Yet we allow it to happen. Just like in 1992, nothing had changed and nothing was likely to.

Still, Murdoch et al have their pocket government to ensure they will be shielded from the very austerity to be inflicted on their readers. They will get their corporation tax breaks and increase their profits while my old gent will see his pension dwindle, his benefits frozen, suffer VAT rises, inflation and interest rate rises and see growth falter.

Nice work Murdoch. When times get tough, it's back to the old adage : I'm alright Jack, pull the ladder up.

Saturday 26 February 2011

Will we EVER have another slow news day?

Yesterday so much was going on it went almost totally unreported that the Pope is to be taken to the International Court of Human Rights for crimes against humanity!!!

This was a day much like any other day lately where :

-Libya descended into civil war, joining the rest of the Middle East in a dramatic uprising of the people
-The UK government were punched black and blue over a failure to get UK nationals out of danger and home from Libya quickly enough
-The GDP figures that so shocked the "experts" were revised down still further to -0.6% from -0.5%
-New Zealand is reeling from a terrible earthquake
-Ireland went to the polls to cast judgement on a government that has presided over the destruction of their economy
-The NHS, Welfare System, Schools, Libraries, Hospices, Legal Aid, Justice, Policing, Prisons, Universities and anything else I forgot to list were under attack (just like every day since May 11th)

Given all of that, I suppose it's not surprising that a challenge to the very heart of Catholicism might be squeezed out.

Still, thank goodness time was found to report on Ms Kate Middleton's first Royal Engagement eh?
Apparently she was :
"picture-perfect as she stepped out with Prince William for their first official royal engagement.... Kate donned a chocolate-trimmed camel coat, with matching tights and black ankle boots, all topped off with a gorgeous fascinator by Philip Treacy, the man she's asked to create headwear for the royal wedding party."
It's a mad old world at the moment eh?

Weekly Round-up

For months - and in fact years - sickness and disability campaigners have used every method they possibly can to highlight how unjust, ill-thought through and dangerous some of the changes to their support and care are.

We've opposed the Work Capability Assessments of ESA (Employment Support Allowance, previously Incapacity Benefit) unremittingly. They are unfit for purpose, distressing and degrading. More recently, we've opposed the consultation on DLA and plans to reduce it by 20% before a single claim is reconsidered. We oppose removing mobility payments from adults in residential care and we oppose replacing DLA altogether with PIPs or Personal Independence Payments.

Well, this week the government's policies started to crumble and like so many of their other incoherent schemes, the judgements were brutal.

First - and crucially - this Compass Report confirms what disabled people have been saying all along. There are not millions of people lounging around on sickness benefit who should not be. Figures and theories, first put forward by James Purnell to justify forcing millions of sick and disabled people into work are finally being exposed as flawed, ignorant and based on assumptions that are just plain wrong.

Next - and this one is delicious - the governments own advisers, the statutory social security advisory committee have expressed exactly the concerns over DLA that we have. They conclude that cutting DLA by 20% appears to be no more than a cost cutting exercise.

And most triumphantly, The Broken of Britain have achieved yet another success with this beautifully eloquent open letter in the Guardian. Where just a month or two ago we had no friends, where previously we were just a few voices calling in vain, now you will notice we have MPs, Lords, Ladies, Scientists, Lecturers, Disabled Campaigners, Think Tanks and CEOs all speaking as one. As The Broken of Britain have been saying for months; "Alone we whisper, together we shout"

Our message is finally being heard and we are making progress. As momentum grows and more people join us, headlines like these will become more and more commonplace. We urge the government to reconsider now and engage with us to reform welfare in a way that will "first, do no harm"

Friday 25 February 2011

Other Tory Gaffs

The latest Tory "gaffe" in calling some protesters "Retards" made me search under "Tory Gaffes" on Google. My laptop nearly blew up!! Here's just a tiny selection.

In the name of all that is holy HOW do these people get elected???

Alan Duncan who "joked" about murdering a beauty queen on Have I got News For You?

Or Rory Stewart MP Who said his constituents were "yokels" who held their trousers up with string?

Or the two Tory councillors suspended just days before the election for racist comments

Or David Davies calling ethnic communities medieval

In fact, there are so many racist gaffes, I'll just post this compilation here

Under sexism, we have this Welsh Tory candidate's sexist comments on Facebook

You know what, I've lost the will to live, but before I give up (you get the gist)

The gaffiest gaffe of all. Ladies and Gentlemen, I give you David Cameron on Gay Rights :


Just a quickie.

John Fareham, Hull City Tory councillor called a group of protesters "Retards" on twitter yesterday.

Hahah, I hear you snort, typical Tory.

Yup. And these are the people responsible for deciding whether sick and disabled people have a right to support, care and dignity.

Hysterical isn't it?

** Though the tweet has now been deleted, Mr Fareham later tweeted :

"I apologise unreservedly for the adjective in my earlier tweet (deleted) about the intimidation by some people. I got it wrong &I am sorry"

A little incongruously however, the tweet before reads :

"Labour happy for tories to be called "scum" "shites" etc but cry when they get it back"

Jars a little with his repentance, no?

The Sickie-Jinx

I haven't said much about how I feel lately.

You see, I have a "long term variable" condition. I mention it a lot. Mainly I say how they are largely ignored by politicians when considering welfare systems, mainly baffling to ATOS assessors with their tick-box computers and one-size fits all conclusions. Even doctors and consultants often misunderstand them.

One day you can be flat on your back, unable to move with exhaustion, the next you can be building a tent in the back garden with excited children. One day you can be dazzled by dramatic ambulance lights, the next, having a nice spa day with friends.

Since a few weeks after my surgery, I've entered the "Look Papa, look, I'm a real boy" stage. As I mentioned a few weeks ago, that doesn't mean my "fine" isn't your "I want my Muuuuuuummmmmy" but I like it. A lot.

Trouble is, if I tell you, I will invoke the wrath of the terrible, vengeful Sickie-Jinx. (Shhhhhh, just saying it makes the beast stir) He is the most horrifically evil, most cruel of all the Jinxes. He waits, until you dare to wonder; until that fleeting hope flickers across your mind, just for a second. "Could this finally be the time I stay well?" Just for a week or two, the Sickie-Jinx lets those thoughts start to whirl and bubble-up - "What if I could work again? What if I could have a "normal" life?"

If he feels particularly vengeful, he lets you enjoy a beautiful perfect day, or even a week away - on an aeroplane and everything - where your husband-carer might again become your lover-friend. He might let you take the kids out for a whole day, laughing and carefree as you walk and skip or even climb a tree with them. He will build you up until you begin to believe it could all be so, so different.

It's the belief that he feeds on. As soon as the belief is large enough, as soon as it starts to fill you up he swoops down and sucks it out of you. The very day after you built that tent or came back from that holiday, still smelling of coconut oil and sangria, he burns you down with dreadful fire. He shoves his claws deep, deep in and the pain is back. He thrashes and writhes, with you in his jaws until the exhaustion is unbearable again.
He mocks you and plays with you and the despair is deeper than before as it fills the gaps that hope had filtered into. He breathes fire onto your hopes and dreams until they are reduced to dust all over again.

Does this sound defeatist? Does it sound pessimistic? Well, that's because you never met the beast. For 28 years of my life he has slumbered, waking at the moments I least wanted him to. The night of my 16th birthday party, the day I got my acceptance letter from university, the day before my wedding, the day I got my dream job, the day I stopped breastfeeding my child and countless other precious days.

Can I slay him? So far, no-one has found a weapon deadly enough. I've tried code-words. When caring friends or desperate mothers ask "How are you" I answer "Hmmmmm" with an encouraging raised eyebrow and imperceptible nod of the head" but he always hears.

So if you ask how I am, If it's OK with you, I'll just answer "Oh, not too bad." I'll try as hard as I can not to dream, not to believe. I'll live one day at a time and manage whatever I can until the beast stirs again.

Thursday 24 February 2011

Do you REALLY want to Save the NHS?

It's nearly too late. NHS "efficiency savings" are being finalised - 20 Billion pounds worth of them and yesterday, False Economy revealed that over 50,000 jobs will be lost and they will include doctors, nurses, dentists, paramedics and all other front-line staff.

So could the NHS ever have saved this eye-watering amount without patient care suffering?

Not only do I believe they could have, but I believe they might have improved both patient care and the working lives of staff. I want to tell you why and it really matters to me. It won't be short and snappy - you can't save the NHS in a few paragraphs - but I do believe it's vital.


Before we can suggest solutions, we need to understand a little of the history of the NHS. We need to remember how it came to be what it is today.

We couldn't do much back in the 50s when the NHS was founded. A few operations, antibiotics, x-rays and basic treatment. Over the years, wonders like MRI and CT scanners have launched diagnostics into a new millennium, miraculous surgeons have developed organ transplants and left almost no cell of the human body unreachable. Brilliant professors made leaps in treatment and medicines that mean we live many years longer and survive thousands of illnesses and accidents that previously would have killed us. Premature babies can now be viable from as little as 23 weeks and a dazzling array of specialisms and medications now come together to ensure they survive.

As each of these miracles unfolded, a new department got "tagged on" to the system. New departments had to communicate with one another. If a whole new branch of medicine emerged, existing staff had to learn about it and understand how to use it. Hardly a week has gone by since its inception, when the NHS hasn't discovered something new or "tagged" something else onto the system. The many branches and tentacles and support networks and community arms swamped the modest original model decades ago.

Then came computers. A deathly slow, inefficient system from the 80s limped on for years too long and that too was added to and modified every time something new came along. Over the years, this programme or that database emerged, but soon one programme couldn't communicate with another and wards could't talk to dieticians or radiologists couldn't talk to consultants. Tests got ordered but lost or appointment systems crashed and the NHS waded on, like Gulliver, with hundreds of thousands of Lilliputians inadvertently holding him back.

Add to this politics. Short termism. Any government elected for four or five years will aim to make the most impact for the least cost in that time. Never mind what happens after the next election, as long as it holds together long enough to look effective. Never mind the patients that suffer or the nurses and doctors who want to scream all day long at the farcical systems and routines of their daily working lives. Each new government "tags on" another few modifications and make the whole thing even more complicated and inefficient.

This will NEVER take the NHS forward. It will always be run on the egos of politicians and never on the needs of those that use it and work within it.

It doesn't help that the NHS started its life in conflict. The public, the Labour Party and most nurses were fiercely in favour. Consultants, the Conservative Party and initially, GPs were fiercely against. The two were dragged together by the sheer force of nature that was Nye Bevan, but for literally decades they were uncomfortable bedfellows. Nurses were often undervalued or their skills dismissed and patients were often ignored as individuals. There was an elitist hierarchy built into the system that has often been too slowly broken down. The BMA was almost entirely self-governing and a culture of silence ensured that mistakes were usually hushed up, whistle-blowers frowned upon and the more highly qualified the staff, the harder they were to dismiss. None of this served the patient and has only worsened since "compensation culture" took a hold. Hospitals are now terrified of being sued as well.

You might think I'm scoring a cheap political point by pointing out that Labour supported the NHS while many Tories opposed it. I'm not. Combative politicians, by definition, disagree over the future of the NHS, and this conflict has ensured a total lack of stability and forward planning over the years.

This will NEVER take the NHS forward. It will always be run on the egos of politicians and never on the needs of those that use it and work within it.

The problems need enormous solutions. They need a cross party commitment to remove the NHS from politics altogether. To set up a modernisation fund that runs into 10s of billions - all of which would pay for itself many times over - over time.

Firstly,we need to design a bespoke computer system, designed from scratch, that could cope with the unparalleled complexities of providing good patient care. Systems that made life easier, that meant anyone could communicate with anyone else, that was intuitive enough to pre order regular appointments or order discharge medications so that they are ready in minutes rather than hours. Labour looked at doing this, but found that it was far too expensive and long term, Why spend all that money on the success of some future government? In the end, this would permanently save billions a year in missed appointments, double bookings, lost bookings, wasted orders, bed blocking and pointless delays. In the end

But if you really want to save big sums of money in the NHS there is only one way of doing it. Ask the people who work in it. And the people treated by it. What on earth is the point of asking MPs or focus groups or costly management consultancy firms to save the money? That's just more tinkering. The only way NHS staff will feel inspired to save that money for you is to ask them how. To really ask them and to listen to and act upon the answers. What happened to all those public "consultations" and "surveys" the coalition published online? The thousands of people who commented with suggestions on how to save money?

I imagine they suddenly realised that a genuine consultation of staff and patients would take years. Every job in the NHS, from porter to professor, is packed with farcical wastes of time and money every day. One will never improve without the other, because the system relies on each separate department to work together in order to function. The porter waits hours a day because of bad communication, a professor has research grants pulled by new governments or because of cuts. Nurses end up spending more of their time trying to sort out the messes created by it all than they do caring for patients. If every last person in the NHS was asked "What is wrong and how do we fix it?" we would get the answers we need. We wouldn't get them immediately, but in the end we could create an NHS fit for the 21st century that really was the envy of the world again. In the end.

Finally there must be a mass standardisation of care across every trust, in every GP's surgery up and down the country. At the moment, a brilliant surgeon can develop a procedure, use it successfully for decades, but it might never filter out to the regions or be used by his or her colleagues. Care on one specialist ward can differ wildly from another. The NHS must decide best practise in every discipline and roll it out everywhere. Regulation should be in the hands of an independent body, not thousands of independent boards all doing their own things. The "postcode lottery" is not all about money, it's also a symptom of disparate groups - who will always vary in expertise and vision - behaving like independent states.

As an excuse for demolishing the NHS altogether and replacing it with a private system, we are often told that enormous, institutional public services like the NHS will never provide good customer service. We are told it gets bloated and lazy. What an enormous heap of claptrap that is.

Let me give you another reason why the NHS can't always provide excellent service. This is a vast workforce with no say over the direction of their company. Every 4 or 5 years they get a new set of bosses, who muck everything about without asking if it's a good idea. They hire people you don't need or fire people you do. They decide your wages or demand that you work harder with fewer staff. None of the managers or CEOs of the company get a say, none of the staff, just a new "board of directors" from the remote bubble of Westminster that never visit any of the branches. When you put it like that, it's ridiculous isn't it?

Here's an idea - why not suggest that the NHS runs itself? No more politicians, just a cross party agreement on future policy and then a Co-Operative of the staff? For every efficiency found or system improvement taken on, the department responsible could earn a percentage of the saving to use to make their own improvements, or to offer as pay incentives or bonuses. Finally, once and for all, why don't we empower the people who know the system best to get on with running it? Why don't we give them a stake in their own futures, allow them to plan for the future, give them back a pride in what they do and show that we value and trust them rather than constantly undermining them?

No-one else can do it, only the staff, but on the whole they are way beyond trusting any new scheme or consultation. They've been let down so often they've learnt to be a pretty cynical bunch.

How about patients? How often do you watch Newsnight or SKY News or the Daily Politics and see a debate over healthcare taking place between two or three patients? Politicians never ask us either. Some hospitals however, make great attempts to involve patients on their boards, or in planning staff training. Many have done endless studies into mental health care or chronic care or elderly care and their expertise and best practises can - and must - be rolled out across every hospital. Imagine asking hundreds of thousands of long term patients where the system wastes money? We know! We see the £1000 bags of liquid feed get lost or wasted, we see the £2000 ampoules of drugs thrown away because doses are prescribed wrong or they're not stored properly.

The NHS is our largest expenditure and will only cost more and more as people live even longer, even more miraculous discoveries are made and even more efficient treatments are developed. The answer is to get it fit for purpose now. If we carry on using it as a political football, it will just become less and less able to cope with the ever increasing pressures it will certainly face in the future.

People will read this and say "Oh, that will never happen. Politicians working together? Co-operative of the staff? Spending Billions of pounds up front?

Well, it could happen. We could make it happen. If Nye Bevan could set up the entire NHS in less than a year, in the face of violent opposition at a time when we had the largest deficit of all time then we could decide to end the short term mentality that so weakens the NHS today. We could invest the money to make it happen and know that all those IT contracts and all that private sector involvement would boost the economy and create jobs.

We could take the NHS away from politicians. We could make them agree. We were promised a "new politics" after all, so lets demand it. Of all the issues we vote on, the public (if not the politicians) agree overwhelmingly that we love the NHS, we're proud of it and we don't want to lose it. We could stand up and say that enough is enough, that we don't want politicians and their quests for glory holding our NHS back any more.

Will we? I hope with all my heart that we do.

**Please help me suggest this to the rest of the country. Once again, please link, tweet, share or write to your MP. If our politicians are too timid or blinkered to propose radical solutions to enormous problems, then I believe, it's time we showed them how. Thanks

Wednesday 23 February 2011

The NHS - Cameron's Albatross

It's early 2010 and Cameron is a worried man. That 22 point lead of last year has slipped away, slowly and inexorably until a poll or two show the two main parties with just a 1 or 2 point gap.

Not only is a majority looking less and less likely, but another Labour win is now a real possibility.

Only one thing will turn it around and at the start of a brand new year, Cameron plays the only card that might allow his party a shot at power. "I'll cut the deficit, not the NHS" he claims and promises to ring fence NHS spending. Focus groups have told him that Conservatives are still not trusted on this issue and unless he changes it, he won't win. There will be no "cuts to front line services" and there will be no "top down re-organisation." 

If the public had forgotten everything else about '97, they still remembered the elderly patients dying on hospital trolleys through lack of beds, they remembered 18 month waits for surgery and Care in the Community. They remembered closed wards and leaky hospital roofs and endless cuts to trained staff.

Cameron spoke of his disabled son Ivan, who died the year before, to persuade even people like me that he understood the NHS, understood how vital it was, understood how much we rely on it and treasure it. He talked of the worry and fear and the great relief of knowing that the incredible NHS staff were there when his family needed it most. He staked his future on persuading us that he valued the NHS just as we do.

Today, False Economy and the Telegraph reveal that over 50,000 jobs will be lost in the NHS and that these jobs will include doctors, dentists, nurses, paramedics and other vital front-line staff. The headline will run all day on every channel. It will be seen by every cyber-campaigner. It will be run in every newspaper.

Andrew Lansley's "reforms" have already been a nightmare for Cameron - GPs are against it, consultants are against it, nurses, patients and hospitals are against it. The news has run in a loop ever since the true extent of his plans was revealed and most people believe the NHS is being privatised through the back door. With this scheme, the government has pitted itself against the NHS and has almost no allies to see its reform through.

Soon, people will be served an endless diet of dying babies in overstretched maternity wards, lengthening waiting lists, cancer patients dying before they are referred for treatment, hospital closures and horror stories about mistakes made by overstretched, exhausted staff. There will always be these stories when the NHS is squeezed and they're a deal breaker.

It won't matter what arguments they counter with, it won't matter how unjust the criticisms, this is the NHS and you attack it at your peril. To stake so much, to allow statements linking your appreciation to a dead child, to make promises about top down re-organisation and staffing levels that you had no intention of keeping is total and utter political suicide.

Trees and libraries and students all pale into insignificance when the NHS lumbers into view and politicians that haven't learnt this yet must have spent their lives living in a bubble. Sure, improve it's structures to make life easier for staff and patients alike, cut management and support jobs if you can be 100% sure that they will be the only jobs to go, but if the public even sniff a threat they will reject you.

Not only do the public sniff a threat, but the stench is getting so strong after just 10 months, that no-one can miss it. This NHS albatross will never leave Cameron now and if he's not careful, it will destroy any credibility that he won for his party on public services.

Tuesday 22 February 2011

Hospital Food CAN Improve - Here's How

So last night's Dispatches was an undercover expose of hospital food. *Sigh* Another one.

Tonight, I believe we are to be treated to Heston Blumenthal's treatment of the subject. *Sigh*

Back in 2000 the famous-chef-person was Lloyd Grossman. The exposes found - you'll never believe it - that you wouldn't feed hospital food to your dog.

No doubt back in the 50s, someone tried to enlist Fanny Cradock to improve standards after some clipped-voice BBC reporter got served gruel for a few weeks as an in-patient suffering from rickets or something.

How many exposes do there need to be? Why do we never listen? More to the point, why don't politicians and hospital managers see why it matters?

:Last night's programme pointed out that this was part of wider failings in patient care. The same ward that leaves a patient lying in their own filth for hours on end is unlikely to hold a fork or cup to make sure a patient gets to eat. The same hospital that covers up the failings of an incompetent surgeon is unlikely to care whether or not the custard is hot.

Oh, I remember all too well the "beef crumble" and "grey-gristle pie" (unidentified meat) of the mid 90s! Who's ever eaten beef crumble for goodness sake? Many patient's are elderly and it goes without saying that all are ill - appetites are unlikely to be huge and often patients are too frail to feed themselves. Did you know that it uses calories to be ill too? Infections munch up calories like an hour in the gym  and post surgically, a patient can literally need thousands of extra calories just to not lose weight as the body goes into overdrive to heal itself.

But there is hope!! It can change and change very effectively. My hospital, Addenbrookes really embraced the 2000 food revolution. It took a few years, but eventually, the effects filtered onto the wards. The food is now somewhere on the spectrum between good - excellent and this is how they did it :

1) In the 90s, hospital catering was largely outsourced and quality had been endlessly squeezed to make room for profit. What's more, food was often prepared elsewhere and simply re-heated on site. Addenbrookes fired up the dormant kitchens, and bought it back in-house.

2) Real Menus  - Every patient gets a glossy menu at the beginning of their stay with 3 or 4 daily choices at each meal. Every morning, the patient chooses what they'd like for the next day, cutting down on waste. The options come up on heated trolleys and there is always room to change your order or even go back for seconds.

3) Quality of ingredients - A "vegetable" had previously only ever been soggy and pre-frozen, now they're the right colour - carrots are buttery with a little parsley, beans crunchy and sprouts fresh. Salads sprang into life and are always available as a side dish. Meat turned into real meat and you could find plenty of it lurking under a crispy puff pastry pie crust or fluffy dumpling. Mashed potato is made from potatoes (a little lumpy, but "real" at least) Deserts are yummy - fluffy sponge puddings and homely apple pie.
There is always a cold option that can't spoil if you need to wait a while to eat it - maybe smoked mackerel or cold meats. My personal favourite is cold poached salmon with a fresh cucumber and coriander salsa.

4) 24 Hour menus - This is the most important innovation of all. If you found yourself a long term in-patient, you used to miss meals all the time. Most days you are wheeled off for a scan or procedure and by the time you get back you've missed lunch and maybe even dinner too. You might have been nil-by-mouth the night before and could very often go 24 hours or more without getting a thing to eat. It's not hard to see how after a week or two of this malnutrition started to beckon.
Now, Addenbrookes always has sandwiches, cheese and biscuits or soup available on the ward out of mealtimes and they introduced a 24 hour menu, always available if a patient feels a bit peckish. You simply ask the nurse and within half an hour or so a hot or cold meal option is sent up from the kitchens.

5) Snacks and encouragement - patients are now offered a little treat with the tea rounds - maybe a muffin or a jam tart. Biscuits are always offered and the staff serving the food are helpful and concerned. They encourage and cajole, they tempt patients to munch on a calorie or two wherever possible. They notice which patients aren't eating and support them as much as they can.

6) Special menus - All special diets are catered for - diabetic, low fibre for bowel disease, low fat for weight loss, high calorie for weight gain. Patient's with special dietary needs get a separate menu that simply goes in with all the other orders.

7) Protected meal times - Lunch and dinner times are now protected. In practise this doesn't always work, but there is at least an attempt to keep doctors rounds or visitors away. Staff are a little more able to find time to help weak patients feed themselves and meals don't congeal uneaten as endless phlebotomists and physios interrupt them.

8) Finally, it must have taken real commitment. Financial, sure, but also at every level of patient care. There must have been excellent training to ensure that all staff realised the importance of nutrition to patient care. From the catering staff to the medical staff to the managers, all must have been brought on board and inspired to change attitudes. That is the part that is hardest to achieve and Addenbrookes appear to have achieved it very successfully. Asking for a cup of tea or a slice of toast no longer feels like you are being demanding - in fact it's encouraged - the most important distinction of all.

The BIG question is, did it cost money? I imagine not. The improvement to patient moral and nutrition would have shortened hospital stays, reduced re-admissions from malnutrition and infection and reduced waste. I've always been convinced that spending a little more on food would save tens of thousands elsewhere. Even if it did cost a few pence more per patient, it was a few pence well spent if the health of patients benefited - surely that's what the NHS is there to do?

This debate is never more relevant than now. "Efficiency savings" will always start with catering and coalition plans to outsource and privatise almost everything in the NHS mean that old profit-demon will start to munch away at quality all over again. It's not too late for hospitals like Addenbrookes to roll out a national scheme using their experiences to get things right - but it will be soon.

Monday 21 February 2011

Cameron Pretending to be Common

It's a depressing news day people.

So depressing, I'm thinking of "supporting the economy" a little in M&S food hall and Primark.

To cheer you up - today is a day when I fear you will need it - just click on the link below. Lots of very funny pictures and captions of Cameron with plebs, trying to be "common"


Sunday 20 February 2011

Some amazing stuff

I read a few great article this week.

If, like me, you like reading forget-to-blink exposes, then these next five should give you a great hour curled up with a cuppa. Enjoy!

This is simply, deliciously, shocking. My good friend at The Green Benches, Eoin Clarke, posted this eye popping set of data on Lib Dem diversity. (Or lack of) Just WAIT til you get to the diversity chart.... (**Labour and Conservative charts now available on February archive too.) This letter was written for any GP concerned about plans to transfer most of the NHS budget over to them. It is available for them to send to their patients and explains in such clear terms why it is a change that could hurt them - the patient.

This is yet another brilliant depiction of how being sick or disabled can happen to anyone at any time.

Monbiot yet again, exposes a bit of corporate tax evasion so shocking, I swear you'll gasp out loud - actually gasp.

If you want to see a forensic dissection of a government bill, then this from Broken of Britain proves beyond any shadow of a doubt that there are some incredibly well informed campaigns in the fight against cuts to sickness and disability care. It would be a great mistake for ministers such as Maria Miller to carry on believing that "concerns {that} are based on a lack of detailed information of what we are talking about in terms of our reforms. People need to get the facts rather than speculation," she says. "The anxiety can often be based on the fact that we are dealing with very complex benefits"

Maybe politicians really are going to have to consider a new politics, because, there really is nowhere to hide from cyber-warriors. Nice work.

UPDATE : Just remembered data from Eoin's Green Benches charts (No.1) collated by    

So sorry for the lack of credit malcolm 

Saturday 19 February 2011

Did you hear the one about....Cheats?

Disabled person goes into an "assessment"

Assessor says : "How are you?"

Disabled person replies "Fine."

Disabled person fails assessment.


Cheat goes into an "assessment."

Assessor says "How are you?"

Cheat says, "Well, I can't walk at all, I have terrible pain all the time, my head dropped off, I'm depressed, reclusive and have leprosy."

Cheat passes assessment.

See the problem?

Weekly Round-up

This week we saw the coalition falter on almost everything, but were they pushed or did they jump?

Cameron's new spin doctor, Craig Oliver, allegedly suggested the u-turn over forests  I imagine on taking up the job he said something like "What on earth are you thinking man. You might as well announce that all first born puppies will be drowned!" For the sake of a few million quid, it was always a ridiculous battle to fight.

Andrew Lansley turned a little on his chaotic NHS plans. Private firms will now not be allowed to undercut the NHS in a race to the bottom to provide bargain basement care. Might be some time before we see the DIY-Surgery kits after all.

On sickness and disability cuts, there was the wimpiest little mutter about maybe thinking again for a while about stopping mobility payments for adults in residential care. Not exactly a u-turn, but as a friend put it, a "chink of light. Now we can shine it into all those dark corners"

The plan to cut housing benefit by 10% for people on Job Seekers Allowance was dropped - allegedly because the Lib Dems and Mr Clegg argued hotly against it, so well done on a bit of a triumph yellows. The policy would have caused great hardship.

Finally, the government announced a u-turn on scrapping debt counselling. Ker-ching! The penny dropped that now might not be a good time! What with all the unemployment and inflation and cuts and stuff.

**CAUTION** The first rule of negotiating is "Go in High" You never expect to get all your demands, but if you throw in a few curve balls, then drop them as though you are making concessions, you get everything you wanted all along. 

Could it be that our cunning coalition never really intended to sell all our trees anyway? Was the 10% housing benefit reduction idea just a decoy? Is the NHS now safe? Can we take it off the ventilator?

This week, we saw a little bit of movement here and there, but we're not out of the woods yet. (Though the trees are out of the woods apparently - confusing.)

My laugh-of-the-week was reading that the Conservatives in this coalition are "Masters of Spin." I spat tea all over my keyboard in fact. This would be the same Mr Cameron who made airbrushed gaff after shirt-sleeved gaff during the election campaign, steadily eroding a 21 point lead down to a majority-denying 6?

These are the same Conservatives who went ahead with buying aircraft carriers with no aircraft to carry? The same Conservatives who allow Michael Gove anywhere near a TV screen ever? The same Conservatives who think that taking wheelchairs away from the disabled is ever going to play well on Question Time?

We should be careful that we're not just being thrown a few crumb-silencers, but one thing I can be very sure of is this government are most certainly not masters of policy. (Just typing it is making me chuckle.) One might argue that they couldn't in fact organise a sell-off in a forest.

Friday 18 February 2011

Should we be discussing Suicide in debate over cuts?

Laura is 29 years old. Until a few years ago, she was a vet, just qualified and looking forward to her future. She was engaged to Paul and they were planning their wedding. She lived a pretty "normal" life, in a "normal" home and enjoyed walking holidays and playing "cool auntie" with her young nieces and nephews.

Her wages had improved! Finally, after all those years of studying, she could afford the odd luxury. She and Paul treated themselves to a weekend away to Barcelona when she got her first "proper job" and soon after, she'd bought a lovely new car. 


For a while though, she'd been getting shooting pains in her hips and knees. crouching on concrete floors, treating sick animals, or hours in the cold and damp waiting for a new foal had become very uncomfortable. One day, she found she physically couldn't get up from the floor and had to wait for someone to come and help. 

She went to her GP a few times, but he didn't seem to think much was wrong. He suggested she take paracetamol for the pain and take it easy in the cold. 

She carried on doing her job, but it became harder and harder. Soon, getting out of bed took 5 or 10 minutes - her joints felt stiff and painful and she seemed constantly exhausted. She started to hobble a bit, embarrassed, but unable to help it. 

When she got in from work all she wanted to do was fall into bed. She took all the paracetamol she could and  even added in some ibruprofen, but things just got worse and worse. She never wanted to go out to dinner or have sex, walking holidays seemed unimaginable and she was always irritable with pain or exhaustion. Despite feeling exhausted all the time, she got less and less sleep. As the pain increased, she could no longer find any way of getting comfortable or relaxing. 

It took a year or so before her doctor referred her to a specialist. By then, she could barely walk, shuffling like an old lady. Her skin was pale with exhaustion, her hair was dull and the dark circles under her eyes made her look haunted. The consultant ran a few tests and then gave her the news that she had Rheumatoid Arthritis. What's more, it was a particularly virulent case of early onset disease. It was degenerative and her symptoms would only get worse. He told her there was no cure and the words rang in her ears. There were however treatments they could use that might slow the progress of the disease or even bring about remission. 

The first treatment made no difference at all. The second gave her debilitating, splitting headaches and the third (which she was warned carried a risk of brain tumours) made her vomit almost constantly. The consultant finally prescribed the strongest drug available to him and Laura had to learn to give herself injections in her tummy every two weeks to take the medication. For a while, the injections seemed to work, but then they just stopped. There was nothing else to try and she simply fought on through the pain, taking strong opiate painkillers when she couldn't bear it any more. 

She had to stop working. Her precious job, her animals, her ambitions and dreams all seemed to be slipping away. She applied for Employment Support Allowance ( ESA. Previously Incapacity Benefit) but was found  fit for work after a humiliating "assessment" where she was asked to touch her toes and climb some little wooden steps. 

Sadly, Paul couldn't cope. Life had changed so completely, he no longer recognised the woman he lived with. She wasn't happy-go-lucky or carefree any more and their romance slowly fell apart. In the end, he left her. Their home had to be sold and Laura found herself applying for housing benefit and renting a tiny one bed flat above a shop. The stairs were like a mountain now, so she rarely went anywhere at all any more. She found it increasingly hard to have a shower or cook a meal - her fingers were stiff and swollen with arthritis too by now and the local council were only able to provide care for a few hours twice a week. 

Her sisters couldn't care for her very much - they had busy lives of their own and she missed the kid's laughter and rolling around on the floor with them or playing tickles or chase. Suddenly she had so much time but nothing to fill it with. 

It seemed like every day she had to fill in another form or attend anther work programme, but at the same time, all she heard on the news was that most sick or disabled people were scroungers or skivers. She started to weep too often for her old life and had lost so much so quickly, that she struggled to deal with the barrage of emotions she felt. 

Where she used to be self-sufficient, now she was reliant, where she used to be energetic, now she was exhausted. Luxuries were forgotten and she worried about putting the heating on or buying food - after her rent had been paid, she only had just under £400 to pay for everything else.  

Sometimes she wondered what on earth had gone wrong? How had she gone from a vibrant, happy young woman with a whole life of plans ahead of her into this? 


For a few days there has been a debate over whether it is counter-productive to discuss the risk of rising suicide rates in the broader debate over cuts to sickness and disability benefits. Today, a passionate campaigner for disabled rights wrote this article for the Guardian. I agree with very much of what she says, but I don't agree that talk of suicide is being used in this debate as a tool or a threat. I think that given stories like Laura's it is a worrying possibility. This is a group of people just like Laura, who already face terrible challenges and I do believe some are unable to cope with the extra guilt and fear they also now face. 

I found the comments that followed the article depressing. So many seemed to think that stories of despair and hopelessness were exaggerated or that talk of ending one's life was some form of militancy used to blackmail the government with. 

Since I've started writing this blog, I've been shocked by how many sick or disabled people say they can't go on. Not dramatically, but matter-of-factly. Time and time again. At least weekly, I've heard from people in despair, unable to go through another assessment or take yet another cut in their already meagre lifestyles.

If people are wanting to debate with this shocking degree of candour, then I think we should all be listening. Few people wish to discuss suicide on a public forum and if they start to do so in significant numbers, I can only believe that alarm bells should be ringing. 

I discovered this week that no-one actually keeps statistics into how much more likely sick or disabled people are to end their own lives. One NHS document reports that it is a "significant risk factor" but the ONS confirmed to me that they had no studies at all on record. With this in mind, if suicide does increase amongst this vulnerable group, no-one will know. 

A full and frank debate needs to base itself on facts. Not hysteria or threats, but information. In searching for that information, some unpalatable subjects might turn up. But dismissing a debate about them is surely not a solution?

If you feel that this subject affects you and you'd like to talk to someone, then please go to or you can call them on 08457 90 90 90

TODAY'S SIMPLE ACTION : This is a sensitive issue. Nonetheless I think it important to try to explain why people might feel so desperate. To understand the support we need, people must understand our lives. 
WILL YOU SEND THIS TO JUST ONE PERSON WHO ISN'T SICK OR DISABLED? Someone you trust to read it and try to understand? Either by email or twitter or facebook or by writing to you MP or local paper? We need to expand the debate and reach those who don't know much about these issues. As ever THANK YOU

Thursday 17 February 2011

In Praise of Iain Duncan-Smith

Didn't expect that today did you?

Today is the day that the Department of Work and Pensions announce their flagship reforms of the benefit system, We've all lobbied and urged and dissected, and there are details in the bill that are ill thought out and ignorant. They will cause suffering and hardship and I hope with all my heart that we can persuade the government to modify them .

Nonetheless, Mr Duncan-Smith is not your average politician. He spent years on council estates and in job centres asking ordinary people how the system fails and asking what could be done to improve it.

And he listened.

Simplifying the benefit system into one payment is a stunningly good idea. Tapering benefits when the claimant finds work is even more brilliant.

When people decide to work in politics I believe passionately that most do so to make the country a better place. Sometimes they may be misguided, sometimes they will make spectacular mistakes, but sometimes they will get something right. Just one idea like IDSs might leave the country a better place for generations. On the whole, politicians are not all cheats and liars. They're good people who want to make a difference.

I will carry on fighting the damaging details until I can't fight any more. However, I have a sneaking suspicion that IDS will too. Most of the failings of today's Welfare Reform Bill are inflicted by the treasury and caused by a lack of financial will on Osborne's part to see real reform through as IDS might like.

Just because something is flawed, that doesn't mean that the idea isn't basically sound. Campaigners who focus on the good at the same time as highlighting the bad stand much more chance of being heard. So don't let today get you down. Focus on the potential of a great idea, and we'll all go back to changing the details tomorrow.

Wednesday 16 February 2011

Open letter to Maria Miller - Update

A HUUUUUGE well done everyone!!

The Open letter to Maria Miller I posted earlier today is the 3RD most read, liked and shared article in the UK online today!!!!!!!  Look, only the BBC and Independent are above it.

That is an incredible achievement and can only mean that we start to be heard more and more. You tweeted til your fingers bled and shared and linked, so thank you so much. 

If you haven't sent the letter to her or emailed or tweeted, take heart and have a go! 

You Rock!

UPDATE TO UPDATE - Now, you're all voting + on the little birdy on the left and it's in danger of being second....could we be first????? 

Able Bodied Translators Required

You know what the weirdest thing about the whole mess of being sick or disabled is? You suddenly spend the rest of your life having conversations that make no sense at all. Maybe you were a lawyer or a teacher, a graduate or a gardener and you lived a totally "normal" life of uni or clubs or cutting edge ambition - then suddenly you're nothing. Just nothing. 
You find yourself sitting in front of a doctor or DWP "assessor" or MP speaking the same words you used to use in your old life, but suddenly no-one understands them any more. You say, for instance you are in pain and doctor might tell you you're not!! What to answer? "But I am!" You suddenly find that these circular conversations can go on for months or even years with no resolution. You wonder what words it is you need to find in this new life. 

Next, you are dragged in front of an "assessor" who asks you to touch your toes and walk up and down to somehow judge whether you have bowel disease or schizophrenia (!?!) You try to explain how your condition affects you and what the symptoms are, but they ask if you have any hobbies (?!?) You are expected to go through this odd experience to claim a few hundred quid a month that doesn't even pay for food and heating. 

In hospital you often find yourself assuring a doctor that the drug you're allergic to really will have a lethal reaction, or that whether s/he says it can be one of your symptoms or not, you are indeed vomiting every ten minutes. Bizarre, bizarre conversations that ultimately conspire to make you lose yourself. 

You can't understand where the person went who everyone used to understand quite clearly. Who wore a suit to work or sacked people or discovered new species. You used to speak the same language, but now you find yourself pleading for rent or food or care or medications or even basic human needs such as dignity or cleanliness. 

MPs release statements and you read them and think "Huh? He said what?" Daily you sit open mouthed as policy after policy totally ignores anything that might work and instead, goes straight for the path of most destruction. Now they're all speaking a different language too!!

The media are calling you a scrounger, doctors are calling you a hypochondriac, friends might be calling you a lightweight assessors are calling you a cheat, and MPs are calling you a burden!!! How's that for an attack! You live in another world now, but you used to live with all those other people....

The strangest thing of all is that the world doesn't seem to care much either.You explain what you thought was totally obvious, but no-one seems to get it. You must be speaking a different language, because surely it was only a few months ago that everyone was talking about "protecting the vulnerable" and "fairness." If you had asked anyone what percentage of the sick and disabled they thought were cheats, surely no-one would have put the figure at 93% - that's ridiculous. Yet suddenly, when the DWP miraculously claim only 7% of previous claimants were "unfit for work" everyone believes them!!

So, if anyone out there speaks "able-bodied" do you think you could give me a crash course? Only I've got some really important things to tell them but I obviously can't find the right words. 

Open letter to Maria Miller

Dear Maria Miller,

Before I start, I have a small request. When you talk about "The Disabled" could you please add "The Sick" in there sometimes? Only, millions of people with long term illnesses often face the greatest barriers to work but are rarely mentioned, if considered at all.

You see, I first started lobbying ministers about ESA back in 2009 and was surprised to listen to a half hour speech by the then disabilities minister Jonathan Shaw that failed to mention illness once. Obviously with political and business will it is possible to modify workplaces to facilitate the lives of the blind or deaf or immobile in employment. It's just not so easy to modify for exhaustion or pain or vomiting. A few months later I met with Mr Shaw who made it clear that he didn't really know anything at all about the issues faced by those who are suffer from long term variable or degenerative conditions.

It seemed a little that way when you, Maria "answered" questions online at Guardian Money. Of 250 questions, you replied to 6, often with answers that were strangely irrelevant; you didn't seem sure whether the over 65s would be able to continue claiming DLA? You didn't seem to know which research your own department had based its conclusions on? I read your response to our little online chat this morning;
Miller says she believes that the rising unease will settle once the full details of the proposed changes become clear and is convinced that much of the anger has been triggered by a failure to understand the government's objectives.
"I often hear concerns that are based on a lack of detailed information of what we are talking about in terms of our reforms. People need to get the facts rather than speculation," she says. "The anxiety can often be based on the fact that we are dealing with very complex benefits. The government is going to reform and simplify the whole system."
Oh dear, dear, dear. This really isn't the way to go at all. I am a fairly moderate (and I like to think reasonable) campaigner, but I can already hear the howls of outrage from every corner of the UK as people read that their brains are now being called into question as well as their disabilities.

You see we don't have much else. We can't get about much, we might live in terrible pain or despair. We may have had to give up our hobbies or our dreams, but we like to think that we can still use our brains. We have little still available to us, but we can analyse, dissect and appraise. Of the campaigners I know, one is a PHD student, two are lawyers, one is the CEO of a major charity and I myself have a degree. We've read the green papers or white papers or CSRs in detail and have an excellent grasp of what changes will mean. We're just not always sure you've done the same.

I'm sorry to shout the next bit but I'm running out of ways to make the next point in a way you might notice :


We hear very often that you listen to and consult with health and disability groups over your current proposals, but I can find little evidence of this.  These charities have written to you asking to meet, whilst other leading charities wrote to the Times  begging you to listen and engage. You've never contacted myself or other cyber-campaign groups like the Broken of Britain.

If you press ahead with changes to ESA and DLA as they stand, you will find a Poll Tax/Iraq sized albatross hanging around your necks. There are some very damaging proposals in both reforms and it is in no way dramatic to state that they will cause great hardship, poverty, distress and even death. Why not iron things out while it's still not too late? Why not change things in a way that will achieve your supposed objectives? This is an issue that gains enormous support and coverage online - my own blog has gone from nowhere to become the 23rd highest ranked political blog in the UK in just 4 months and it is only a matter of time before stories of destitution and suicide make this a national issue that won't go away.

Many campaigners can only conclude that the entire exercise is a cost cutting measure. Can you blame them when George Osborne announced how much he would save through these measures before a single reassessment had even taken place? The rhetoric used in this debate has often being accusatory and intimidating "Cheats mugging the country" "Skivers and Scroungers" This has often been fuelled by your own press releases and really needs to stop if we are ever to have a reasoned debate on the issue.

All I can do is ask, yet again, that you stop and listen. When something is truly unjust, those who fight it will win in the end. Surely it is better to do it together and with respect than through endless Daily Mail headlines and suffering?

**As ever, I need your help. Maria Miller's contact details are listed below. PLEASE take the time to 
1) Share this letter online. Click on the Twitter or Facebook buttons on this site or link to other sites. 
2) Use this letter as a template or send your own to the DWP address. 
3) Phone or email
4) Blog yourself if you prefer. 
5) Maria's constituency is Basingstoke - if you are a constituent, please consider making an appointment for her surgery - we need you most. 

Appointments can be made by telephoning 020 7219 5749.
For all constituency correspondence contact Maria at;
        Westminster                                      Basingstoke              
        House of Commons                             The Mount
        London SW1A 0AA                             Bounty Road              
For all Ministerial correspondence contact Maria at:
        Department for Work and Pensions
        Caxton House
        Tothill Street
        London SW1H 9DA


Tuesday 15 February 2011


What does it mean to you?

I'd really love you to think for a moment. Is there a time when you could honestly say you felt exhausted? What had you done? How long did it take? How long did it last? How did you feel?

I don't mean a bit tired. I don't mean too many late nights or the pleasant aches of a day or two of heavy gardening. I mean burnout. The total inability to get out of bed or walk up the stairs or leave the house.

Maybe you had twins and suffered sleep deprivation for months on end. Perhaps you were a high flying workaholic who literally worked yourself into the ground. Perhaps you were struck down by a mystery virus that left you helpless and useless. If you've ever had major surgery, you might remember that even having a bath or walking to the nearby shop left you incapable of doing anything but going back to bed.

When someone with a chronic illness or disability says they're "exhausted" I think this might be the hardest symptom of all for able-bodied people to really understand.

There are countless auto-immune conditions like lupus or bowel disease that leave sufferers battling an almost constant exhaustion that can be worse than all their other symptoms combined. Many other conditions list exhaustion as one of the main symptoms including heart disease, cancer and lung disease. Medications used to treat illness or disability are often debilitating in themselves - chemotherapy, TNF-Alpha blockers, anti-psychotics - the list is endless.

I'm exhausted today. First a party, then a 3 year old who doesn't feel like sleeping at night, then a 260 mile trip to Cambridge for hospital, to say nothing of the endless articles and campaigns squeezed into the gaps have slammed me into the sofa. I'd be in bed if bed were an option. I'm sure those at Broken of Britain and other online disability groups won't mind me saying that they're exhausted too. The effort of making campaigns like One Month Before Heartbreak and Project V successful cost us all dearly and you'll normally find that for days afterwards, their twitter feeds go silent, their mails left unanswered.

We'd love to keep going. I can't tell you how much we'd all like to bang away at this 24/7 until our voices are heard, but we simply can't. And I do mean can't. Remember, my life's motto is "there's no such word as can't" but true exhaustion makes a lie of it. How will I collect my 6 year old from school later? How will I make lunch? Who will get the toddler dressed? Forget tidying or cooking or washing, I'll be lucky to make it to the loo. Literally. It's about 15 steps away - not even upstairs - but the effort seems inconceivable.


I broadly accept the argument that most people are better off in work. Being unable to work is depressing. It makes you lose confidence in your talents and abilities. It is insular and isolating.

I am, however, still waiting for just one MP or minister or health assessor to tell me exactly how people with conditions that cause permanent debilitating exhaustion (not to mention all the other painful, debilitating or embarrassing symptoms they deal with) are meant to hold down a job. Often an attempt to mould our mutated genes into any kind of routine just makes things worse - we get sicker, we feel more exhausted and we put ourselves swiftly into a hospital bed. So no, work isn't always the best answer or even viable. 

Yet, it is these very conditions that are most often refused state support ( it's almost unheard of for anyone with a "long term variable" condition to get DLA for instance) They are the most likely group to be put into the Work Capability Support Group of ESA, meaning that they now have just one year to find employment that replaces their benefits or they will no longer receive any help at all. Nothing. Their entire ESA payment will be stopped. Nearly £5,000 a year stripped from worthless nobodies in the eyes of our society. 

Exhaustion holds all the cards. When it hits, you're incapable of doing a thing about it. I know you probably won't believe me if you've only ever known "a bit tired" but it's true. Our bodies use real exhaustion as the very last warning - "rest or you'll die." I'm really not using overly-dramatic or emotional rhetoric, it's just the truth. If we had nothing else to battle - and some of our battles are mighty - exhaustion would be enough.