Sunday 31 October 2010

Bad day

Just because a blog about being ill wouldn't be of much use if I didn't mention when I was ill would it?

I've lost count of the number of times I've been to the toilet today. I am wondering if Crohn's can actually turn you inside out?

I feel so sick I can't speak and I'm stuck in Devon with two kids eager to go trick or treating, the in-laws and scones, clotted cream and jam on the dining table. (Devil scones, be gone! It is the work of Halloween)

I have a three hour trip back to Sussex later, so I don't dare take any medications or there will be a Halloween style massacre somewhere on the M27. They make me so "jangly," irritable and jumpy, I'd simply end up throwing myself out of the car by the 36th "Are we theeere yet?"

I had my fortnightly injections of immunosupressants yesterday and I'm shivery and sweaty, all at once.


Talk is Cheap

I had some interesting conversations last night.
We were talking about the governments reforms to welfare (some of which I support by the way) and I was the only Labour voter in the room.

Time and again I heard the same caveat : "Of course, we MUST look after the most vulnerable in society"

I'm convinced they all truly meant it.

After much discussion and debate, there was total consensus, that, actually, the most important role of the welfare state was to look after those, who, through no fault of their own, find themselves disabled or sick, living lives of extraordinary suffering.

As the 4th richest economy in the world, despite the credit crunch, if we can't meet this fundamental mark of decency, we should hang our heads in shame.

You know what? You could wake up in the morning blind. You could wake up in agonising pain and your life could change forever. You could slowly and excruciatingly lose your ability to walk, or speak or hear or move. You could get a shock diagnosis of Cancer or Parkinson's or MS or Motor Neurone Disease. You could get a call at 3 in the morning to say that your child has been injured in an accident and will never know who you are again. There are plenty of these stories at Read some, I guarantee you'll be surprised.

The problem is, that by stopping 100% of a sick persons ESA benefit after a year, regardless of their condition, we  fail. We fail in the most fundamental duty we have to "protect the most vulnerable". By removing higher rate mobility allowance DLA from adults in residential care we take the most disgusting, sickening decision of modern times.

Can you honestly imagine someone with Cancer or severe Cerebral Palsy or Parkinson's being assessed and found fit for work? It's happening every day. And it's happening to Lawyers and Doctors and Stockbrokers and CEO's, sickness and disaster don't discriminate and they certainly don't only happen to people who are somehow too "weak" or "lazy".

If you really believe those easy words, if you honestly think we should "protect the most vulnerable" then join the campaign to change this.

If we can't look after our sickest properly, we might as well give up.

Share this blog, tell your friends, write to your MP and call your local paper.

Some things are truly worth fighting for.

Saturday 30 October 2010

When they were handing out compassion....

"Now then, Settle down, Right then, Cripples, over here on the left. No, no, sorry, we had to take that 2.5 billion from you, to pay for the cut in business taxes. I know, I know, they make a lot of profit already, but they were very good to us during the election campaign."

"Unemployed? That's it, over here. Now, we've had to cut rather a lot more jobs I'm afraid, so it's looking a teeny bit less likely you'll find anything any time soon, and we don't see any need for those tiresome "back to work" schemes or (God forbid) guaranteed work places for young people either. We're all in this together now, blitz spirit, chin up. Still, just to help, we'll cut your benefits by 10% if you haven't found work in a year, OK? Good."

"Right, any poor working types? You? Good, good, over here please. Now, I'm afraid we need to cut your housing benefit and move you out of Knightsbridge and Islington. You see, there are quite a few rich people who were jolly supportive and they just can't find anywhere for the nanny to live in Westminster, you do understand? Excellent."

"Now Mum's-to-be. We just can't afford that maternity grant any more - we need the money to give to some terribly energetic parents who want to start a school. They propose to ban poor children and teach elocution! It really is dreadfully innovative. We need to take the Child Trust Fund money too, but for Goodness Sake! As if £250 helps anyone! Barely get you dinner at the Ivy! They won't even miss it."

"Teachers? Now, I know there were going to be some rather gloomy state schools built, but Vodafone are in a spot of bother with their tax, and, well, we've got sooooo many of these dreary non-grammar's already. They need the 6 Billion much more than you, there really is No Alternative."

"Anyone from the arts? (Shifty lot of lefties, Dave) Yes, sorry, but we're done with you, off you go now. Oh, except you Emin, you came to a few jollies and gave that awfully supportive interview to the Times if I recall? Dave, get your wallet out, buy one of her, erm, installation thingies."

"So, who's left, let me see, Oh yes, Workers. Now I know during the election we said that silly NI rise Labour wanted to bring in was frightful - tax on jobs and all that - well I'm afraid if we're going to let the big companies like Marks and Spencer and Top Shop off, (They were dreadfully kind, writing all those letters to the Telegraph and persuading their customers to vote for us) we still need you to pay your bit. Oh and we're putting VAT up. And freezing benefits."

"You see nasty old Labour spent all the money (Dave, psst, we are still using that one are we?) Bankers? Jolly good chaps, wouldn't be an economy without them. What do you mean it all started in America? THERE IS NO ALTERNATIVE I tell you!! Yes, Germany and France and Italy and well, some places are going through a bit of a rough patch, but not like here! We're on the brink of bankruptcy I say! Didn't you realise? Labour spent all the money LABOUR SPENT ALL THE MOOOOONNNNNEEEEYYYYY!"

*George is taken for a little sit down at this point while Dave hands out nice flat caps to all the chaps and aprons to the ladies. A Big Society Corp matron appears to give all the children a nice spoon of cod liver oil and hand out brochures for the lovely new Workhouse units opening in Slough and Crawley and Glasgow.

"Just one more thing.... (George has a rather worrying twitch over his right eye now and his Eton quiff is flapping wildly about the place) The BBC. Where are you? I know you're there??? Ah, Simpson, Alagiah, Husain, Wark, Paxman. We warned you! If you didn't start seeing things the Murdoch way, it would be curtains for you. It was all going so frightfully well during the election, what with the dear old Telegraph and Times, The Mail, Sky News and even those comics for the thickoes, (what are they again Dave?) Oh yes the News of the World and the Sun. We warned you, but you kept droning on about impartiality and a free press. Well, your deliciously shafted now!"

Friday 29 October 2010

Stand up my People

I'm 37 and what memory I have of protest and unions comes from a very different world.

I vaguely remember Arthur Scargill filling the news bulletins and Ken Livingstone when he was still "Red Ken" and hippy women in shabby parkas painting their faces with CND symbols.

My hazy memories also tell me it's pointless.

Arthur Scargill failed and the miners went back to work, their pits closing one by one up and down the country until the coal industry was finished. Ken managed to be elected Mayor of London under a Blair government and the CND movement just drifted away.

Maggie went on to crush the unions and it became accepted rhetoric that they were divisive agitators. it became unpopular to join a union and today, most young people probably don't have a clue what they do.

Yet, later in her reign we saw the Poll Tax riots. Hundreds of thousands of ordinary citizens took to the streets and told Thatcher that enough was enough. Later, under Blair, over a million people took to the streets of London to protest what they saw as an illegal war.

This coalition has taken us by surprise. As the brilliant article above points out, we've been totally duped and the only thing that remains to be seen is how long will the British people allow themselves to be treated as fools? It took 11 years under Margaret Thatcher, by which time we'd seen whole industries decimated, unemployment soar and our public services dismantled. Under Blair, protests took until 2003 to really get off the ground, 6 years after he was elected.

Now, we have a new coalition who pledged no swingeing cuts, who pledged to protect our NHS and who pledged to look after our poor and vulnerable. We are still in the "honeymoon period" of a new government and it is rare that opinion can change so swiftly from "Time for Change" to "Oh God, what have we done?"

Osborne can let Vodafone off a 6 Billion Tax bill while cutting vital support for adults in residential care because we let him. Lansley can take our NHS apart only if we allow it. Gove can experiment on our school system, taking money from the poorest schools to give to the richest if we let him do it.

Just think back to May 6th. Cameron didn't win. Osborne didn't win. Clegg didn't win. We didn't trust them. We weren't convinced that they were suddenly "Compassionate Conservatives" and even after 13 long years in opposition, we still didn't trust them enough to hand them the kind of power they now wield. Nick Clegg has tacked on a handy majority, allowing the Conservatives to act like the Chosen Ones. They aren't and we must not forget it for one moment.

We, the people, have the choice to get rid of them tomorrow, but we have to make that choice. A government cannot govern without the will of the people. 8 Men in a backroom don't get to cobble together a deal that no-one voted for.

We've spent so long paying no attention, we've spent so long thinking things will never change, that we've forgotten what to do, but we can speak out today or we can speak out in ten years time.

By then it will be too late.

Thursday 28 October 2010

Dave's Story

We met when I was 21. I was just out of university and full of the hopes and dreams of a child eager to start playing "grown ups". Dave was a roughty-toughty looking biker who'd been to public school! I immediately fell for his contradictions, his kindness and his charm.

When we met, I had just started on the Addenbrookes diet for Crohn's, and having rested my bowel for two weeks on nothing but liquid feeds, I was just a little way into testing ingredients one by one to see if they caused a reaction. Fate would have it that the weekend I met Dave, it was time to test alcohol and - I kid you not - I had carte blanche to drink as much as I could over four days to see if it caused Crohn's symptoms!

After a very merry weekend indeed, Dave asked me on our first date and insisted he wanted to cook me a meal. I was in a quandary : it was far too early to be explaining all about Crohn's and diets and bowels, (guaranteed to make most blokes run for the hills) but I really wanted to see him again. I tried hedging and fobbing him off, but he wouldn't budge. Reluctantly, I explained about the diet and broke the news that I'd only tested 8 foods so far, so any meal he cooked would have to use just tea, lamb, rice, carrots, apple, beef, tomatoes and green beans! He still insisted on cooking and, as he had no phone in the house he was renting, spent all day rushing to the phone box to check on ingredients. "Can you have gravy?" He asked at some point. I replied that I could, but only Bisto.

I arrived at 8, nervous and fluttery as you can only be on a first date, just in time to see him tipping bisto granules into his stew. I tried to stop him but it was too late. The granules have wheat in them and I'd already found out that I couldn't tolerate it. Mortified with embarrassment, I explained to Dave, but far from being cross, he just started fishing meat out of the stew and oh-so-painstakingly scraping off all the gravy! I decided there and then that this one was a keeper.

Just a few weeks later, I had my first really bad night. We were staying at my next door neighbour's house and I started to be sick and writhe with that old, familiar pain. I tried desperately not to let Dave see, and slipped out of bed, hoping to go home before he woke up. He caught me though, and when I explained he got really quite cross. "If we're together, we share everything, you can't keep running away" he insisted and then stroked my hair through the night through the suffering, getting me drinks and rubbing my back.

Just 3 months after we met, I started to get very sick indeed. I couldn't walk up the stairs and Dave set us up with a mattress on the floor, I couldn't eat at all and had gone back to surviving on liquid feed - 2 litres of the stuff a day. Dave always ate in the kitchen to save me the agony of watching and he made our flatmate do the same.

2 Months later, I was admitted to hospital. I weighed less than 6 stone, I was in excruciating pain and I could barely walk. If you read my post a while back you would recognised that of the infamous 1995 admission.

Dave was so shocked by the state of the system and it's inability to care for me properly, he told work he wouldn't be in for a month or so, borrowed his Mum's camper van and lived in the car park all through a bitterly cold February and March, making sure I got my liquid feed and probably saving my life.

Years went by, and despite all of our challenges, we were the happiest couple we knew. One by one our friends split up or had affairs, but Dave and I outlasted them all.

Dave had always been broody and I'd always felt that I wouldn't have children. We decided that if it ever did happen, I would go out to work and he would stay home to look after the kids. However, as time went by, it got clearer and clearer that I wouldn't be working at all, let alone supporting the whole family. Doctors also started to tell me I may not have children at all due to all the meds and operations. It took Dave nearly 6 years  to ask me to marry him. He knew that it meant giving up on the idea of children and he says he wanted to be very, very, careful that he really could accept a life without kids,

Dave needed a proper job to support us and slowly, he worked his way to the top, running a call centre of over 100 people with a budget of over a million. I carried on being ill and had four more operations. We lived in a adrenaline fuelled haze, constantly facing intolerable stress, debt and uncertainty. Dave was working long hours to allow us to barely get by, overtime in the morning, overtime in the evening, Saturday shifts, in the end something had to give.

Early in 2003, Dave had an enormous breakdown. He sat, huddled up in a chair, his knees pulled up to his chin rocking backwards and forwards, incapable of something as fundamental as speech.

It was obvious things couldn't go on as they were and we decided that Dave would take a three month sabbatical and that we would spend three whole months living in Italy, recuperating, recovering and just being together.

It worked and Dave slowly started to climb out of that enormous black hole of depression. He decided to set up a motorcycle touring holiday business. I think this was probably one of the happiest periods of his life. He'd always dreamed of working with motorbikes and the twisty, thrilling, mountain roads of northern Tuscany were his vision of heaven. To top it all, against all the odds, I found myself pregnant! Dave was so thrilled that I could never find the words to describe it here.

The Mediterranean diet and lifestyle seemed to suit me, but slowly, slowly I started to step back down that "sickness staircase"** I got sicker and sicker and in the end we had no choice but to come back and live in England. Dave was crushed. I think it might have been the closest we ever got to splitting up and I couldn't bear to see my illness affecting his hopes and dreams as well as my own.

Anyway, move back to England we did, and Dave, as always, found any old job to see us through and dragged himself  in to an office every day, daydreaming of the scent of pine forests, jasmine and rich, dark coffee.

And there he's stayed. Trapped in a brain numbing office job, unable to leave because there's little other work available, earning just two thirds of his previous wage. He needs to care for me more and more and just needs a nine to five job that will allow him to get home in time to do the kids tea, bath them and put them to bed. Finally, he starts on the housework and usually collapsing into a chair somewhere around 10pm looking grey and clammy with exhaustion.

He had another breakdown last year. I'd had major surgery, then I had a stroke and then a massive seizure. His Dad was diagnosed with a life threatening condition and his Mum had a stroke too. This time we recognised the signs earlier, thus getting help sooner, but it was still a terrible, bleak time.

His life has been turned upside down by my illness, his dreams crushed by my illness, his career stunted by my illness.
When he took his wedding vows, he took the words more seriously than most "For better and for worse, for richer and for poorer in sickness and in health, til death us do part.


**See if you don't know what the sickness staircase is.

Wednesday 27 October 2010

Human Genome Project Completes First Map

This will change medicine in every way. It will revolutionise how we understand medicine and how we treat disease. It really is the breakthrough of our century..

Sickness and Disability - Review of the CSR

So, it's exactly one week since George Osborne presented his Comprehensive Spending Review in the House of Commons. He had prepared the ground thoroughly. We had spent so many months hearing leaks about this benefit being cut or that service being axed, that nothing could have been worse than we were expecting. It was as though the country had entered some strange kind of collective lobotomy, with robotic Tories up and down the country chanting "There is No Alternative, There is no Alternative" and dutifully the public - as witnessed by the opinion polls - chanted back "There is no Alternative, There is no alternative."

Obsessives like me were all too aware that there WERE alternatives and all around the world, leading economists were trying to snap their fingers to break the trance, but even Nobel Prize winners found the collective hypnosis too potent.

So, George stood up in the House, with his smarmy grin and privileged air and tore apart the fabric of our country in little over an hour. In those few minutes he announced the greatest ever assault on both our Welfare State and our  Public Services that our country had ever seen. Cuts in some departments of 60%, effectively cutting them from the state completely. Redundancies in the Public Sector of 490,000 - enough to fill Wembley Stadium 5 and a half times over. Unprecedented cuts to our local councils of 27%. But it's OK, it had all been well trailed and, well, the numbers didn't really mean anything did they?

Well, yes they did, and over the coming two or three years we are going to see exactly what they meant. Fewer nurses, fewer hospital beds, fewer firemen, fewer police officers, fewer teachers, fewer schools, these are the "bloated public service" Gideon referred to and his reforms will wipe out all of the improvements of 13 years.

The truly sinister thing is the way he prepared the ground. He simply lied.

Yes, he lied. Plain and simple, no doubt, no hyperbole. He just lied, and nowhere more so than when he talked about sickness and disability benefits.

We heard from some Conservatives that "Labour had massaged the figures, pushing tens of thousands on to sickness benefit to keep them away from the dole queue." Well, no. In fact Maggie did that. Between 1979 and 1997 the number of people on sickness benefits went up from 70,000 to 250,000. From 97 to 2010 they went up from 250,000 to just 260,000.

We heard that "Too many people had been abandoned on sickness benefit without any help or intervention at all" (Chris Grayling) Well, no. Labour introduced ESA to replace Incapacity Benefit 2 years ago. All claimants had undergone a ferocious assessment and 40% were simply found capable of work. Those left on ESA were truly sick and in need of support and compassion.

We heard that "The system was overrun with cheats and scroungers "mugging the country"" Well, no. Somewhere close to 20 MILLION people suffer from long term illness or disability in this country - heart disease, cancer, MS, bowel disease, alzheimers, schizophrenia, bi-polar disorder, kidney failure, lung disease, diabetes, asthma, arthritis, deaf bind - the list goes on and on yet only 2.5 MILLION claim ESA.

So what did The Cloaked One announce to punish the sickest, the most vulnerable in society?

To understand his announcement, you need to understand the current benefits. Currently, of all those assessed for ESA, only 9% are found to be so disabled or unwell that they go into the "Support Group". Effectively, they are judged never to be able to do any work of any kind. As I already mentioned, 40% are simply turned down altogether, leaving a whopping 51% who are put into the "Work Capability Assessment Group". They are still sick or disabled but their illness or disability is not considered one that would stop them doing some kind of work.

Under George's announcement, that 51% of sick people now have just a year to find a job. The clock is ticking. If at the end of that year, they are still unemployed (and think for a moment here, who will employ them with the dole queue crammed with just redundant, experienced, healthy applicants?) then their benefits will stop. If they have a partner who is in work, then that partner will be expected to support them 100% despite the fact that they probably already face extra stress in caring for a sick partner and no matter how little they may earn. Single people will be means tested and will continue to get state support unless they have savings over £16,000. If you are reading this and thinking it sounds reasonable, go away and read through my entire blog, then realise that I will almost certainly be put in the Work Capability Assessment Group.

In an even more disgusting bit of detail, Osborne announced that adults in care would no longer qualify for the mobility component of Disability Living Allowance. Many adults in care get an allowance of just £20 per week to keep from their own benefits and DLA gave them one tiny bit of independence in an institutionalised life. This measure saves the treasury just 135 Million but means the difference between freedom and chains for some of the most vulnerable people in our society.

Even the new Universal Credit will exclude DLA claimants but not ESA claimants, re-enforcing the idea that those on ESA are second-rate and less in need. Effectively, this change means that the universal credit will take no account at all of the extra costs and burdens someone in the Support Group of ESA face.

There is some evidence that people have started to realise just what it is George did last Wednesday. The polls now universally show that people think the cuts were unfair, but only just. The government approval rating took a sharp fall after the CSR now standing at around -6 or -7.

And in deciding if you think this is fair, I'll leave you with this thought. If I'd told you a few months ago that 2.5 Million people claim sickness benefit, but 20 Million in the UK have some kind of chronic illness or disability, what proportion would you have thought were "scroungers" or "cheats" or "capable of work"? 5%? 10%? Maybe if you're a Daily Mail reader 25%, but would any of you, hand on heart have thought 91% were claiming benefits because they wanted to? That all they needed was a bit of support and encouragement and they'd be back to work before you could say Workhouse? Or if you have an ounce of compassion would you realise that for many of those 91%, giving up work, giving up their hopes and dreams and ambitions was the worst thing that they ever faced and that if they could, they'd be back to work like a shot?

Monday 25 October 2010


Well, it's 8.27am. I suppose I will notice 8.28 and 8.29. The minutes will crawl by oh-so-slowly until I actually have to check the clock hasn't stopped.

Last night was a bad night. I got pain at about 6pm and it niggled and burrowed and griped and spasmed it's way through the night until this morning. I couldn't sleep and when exhaustion came I dreamed of pain.

When I said pain, it's a bit like I said nothing at all. Pain is like love or fear, it is a word totally shaped by our own experience of it.

Just for a moment, try a little experiment. Remember for a minute, the worst pain you ever felt. Maybe it was a broken kneecap, a kidney stone, sciatica or giving birth. But can you really remember it? Really? The body is an incredible, often magical thing and we are programmed to forget - if not, who would ever have more than one child? If you're truly blessed, the worst pain you ever felt might be a terrible headache or a sprained ankle.

In hospital they use pain scores. Every few hours a nurse will take your blood pressure, your temperature, your pulse and ask how you would score your pain out of ten. What kind of measurement is this? How can I score my pain out of ten when ten for me has been screaming delirium? When ten has been waking up from major surgery with no pain relief whatsoever? When ten has been just moments before my bowel burst and would have killed me? My ten might be your 73. I could be 9 cm dilated after 40 hours of labour, but I'd have to give it a seven!!

When I first got sick, I remember the doctor thought it was salmonella. He was sympathetic and kind, sent me home to bed with a clutch of treatments and a list of advice - drink plenty of fluids, eat dry toast, rest. I writhed and vomited, but it didn't go away. A few days later, the doctor was less sympathetic and after a fortnight, he really wasn't interested at all. I remember being taken aback - how would I survive? What was he going to do next? Why was it less worrying than the first week? The answers respectively were "You just will" "Nothing" and "Because I don't know what else to do."

So the weeks turned into months and the pain got worse.

It dulled my mind, I sat constantly with my knees pulled up to my chin, I avoided walking and I was always irritable. How could something feel this bad and not kill me?

Every now and then, a doctor would come to my house on a particularly bad day and shove a needle into my bum. Just a few minutes later, a warm, enveloping relief would flood through my body and the vice-like grip would release, slowly, slowly until I couldn't keep my heavy eyelids open any more and I fell into a euphoric, grateful sleep. I never knew what they gave me, but I often cried tears of sheer relief.

Over time, the unthinkable happened. I sort of learnt to live with it. Had it got better? No, it got steadily worse, but I was vaguely alive and you can't stay in bed forever. Slowly, I started to do more. I walked a little further, I found a smile to paint on. I went back to school, I got a boyfriend. If my friends wanted to go for pizza I went too, ignoring the red-hot stabs in my gut, rushing to vomit a while after as my body rejected the intrusion.

Slowly, people forgot. Not my Mum of course who held me night after night into the small hours as I cried out in pain and vomited until morning. But "people". When I said I couldn't go to this party or couldn't attend that class, they started to tut or raise their eyebrows oh-so-slightly. Human nature just will not allow us to believe that we could be that ill and survive. Even doctors start to look doubtful or cross. They ask if paracetamol helps and you look at them as though they must be speaking a different language.

And this is the big problem with pain. Once you've got it, there's very little you can do about it.

I imagine I just lost a few of you there. Of course you can do something about it. There are a whole host of painkillers, surely? Well, no, not really. There are low level painkillers like paracetamol. Usually as useful as trying to mop up the ocean with a sponge. Then there are NSAIDS - Non Steroidal Anti Inflammatories, such as Ibruprofen or Voltarol. The problem with these, is that they cause irritation of the stomach and few people can tolerate them long term. Someone like me, with a bowel disease can't take them at all as the bowel is so damaged and thin and weakened, they might cause bleeding or perforation. So that just leaves opiates - Codeine, Morphine Oxycontin or Pethidine and doctors hate these with a passion that is so deep (if often irrational) that they are out of bounds. Fine for an acute problem - a broken leg or a slipped disc, but a no-no if the pain is likely to last. They're addictive you see, and doctors live in terror of producing a junkie.

And here is the staggering, unbelievable point I have taken so long to get to. Most people in severe and chronic pain get no help at all from their doctors. Most people with Crohn's like me don't get pain relief. Most people search their whole lives for a doctor who will care or help or understand, but they never find one.
I got "lucky." Because of the surgical nature of my condition, there is something physical that a doctor can relate to. When my bowel gets blocked, it is called "obstruction" and doctors realise this is agonisingly painful. After 13 years of just putting up and shutting up, a new GP took pity on me and started writing scripts for a strong opiate painkiller. He trained me to give it by injection for times when I couldn't keep tablets down and my life changed overnight.

For the first time in over a decade, I had some control. I didn't have to just suffer, I didn't have to face long, lonely nights of desperation, never knowing when it might stop. I could plan things - holidays, appointments, parties and know I would be able to go. But what I didn't realise was, I had opened up a whole new problem that would hurt me and crush me almost as much as the pain.

From that day on, it was never about the pain. It was about the drugs.   To be continued......

**For anyone who relates to this post, PLEASE consider sharing your stories in the comments section here The more voices come together, the more we are able to fight

Sunday 24 October 2010

Share your story.

In the two weeks since I set up my blog, it has become apparent that there is an enormous sector of society who are frightened, indignant and angry, just like me. Some estimates say that 1 in 10 people live with a chronic illness or disability, others put the figure closer to one in three. Either way, millions and millions of UK citizens live daily with pain or suffering and many, many of them do not claim any benefits at all. Those that do are totally reliant on them to get by.

For years, sometimes decades, we have fought with every ounce of our strength just to survive. We've often faced ignorance and abuse, we've known desperation most of society will never know, but somehow, we've found the strength to carry on.

Some of us have found effective treatments, others have simply searched in vain, but we've all found ways to cope, or we wouldn't be reading this today.

Today, I'm asking everyone who lives with an illness or dsability to share their story. 

I know it's hard, I know it can be embarrassing, but testimonials are a very powerful way of really explaining HOW incapacity benefit, ESA and DLA improve our quality of life, why we rely on them and why we couldn't do without them.

Similarly, those who DO manage to work have an important story to tell as it helps to show this government that by no means everyone with an illness or disability is a "scrounger".

I already have a few, but we need hundreds and then we need thousands. If we present them to Mr Osborne, it might just open his eyes and show him why his reforms are callous, thoughtless and cruel.

Please do this. Stand together, Fight together and Be Heard!

Saturday 23 October 2010

But not a wasted life...

I absolutely hate doing the health updates. Most people like me spend their lives trying to convince everyone there's nothing wrong. I'm doing them to share with the world what a chronic illness is really like and how it affects us.

Whenever I see my aunt, she always says "Well, you look well." I reply "Clarins and willpower" which she thinks is hysterical. I am a victim of my own success and stubborn pride.

At times, people have asked my husband why he stays. I'm often too unwell to look after the house or the kids, often too unwell to have sex or go out for the evening. I might be irritable from the pain, distant from the drugs, exhausted from the constant effort or defeated by hopelessness.

He always tells them "Because when she lives, she really lives."

At 13 I set up a music school at home, teaching children to play keyboards. By 18 I had 14 students and we won every category of the county music festival.

At 15 I started playing keyboards and singing in local pubs or clubs to earn some money.

At 16 I was diagnosed with Crohn's, though I'd had symptoms since I was 10.

At 18 my college told me they wouldn't predict the 'A' Level results I needed to go to university, as I'd missed so much time off sick. I begged and pleaded and guaranteed I'd get the grades, and then I made sure I did.

Doctors told me not to go away to university, I was just too sick. I went anyway.

I applied to spend the third term of my second year in Italy. The doctors said I was mad, but I still went. The programme was under-subscribed, shunned by the healthy, fearful, students

In 2000, my husband and I bought a motorbike in New Orleans and rode it coast to coast all the way to LA. It was 3,900 miles across 10 states and 4 time zones. I was sick all the way, but we made it.

In 2003, we packed up our lives and moved to Italy. The Mediterranean diet and lifestyle had always made me feel a little better. I couldn't live there as I had too many commitments at home with doctors and hospitals, but we rented an old farmhouse and my husband set up a business running motorcycle touring holidays. I split my time between Italy and the UK.  When I was in Italy, I occasionally catered for the huge villas that dotted the mountaintops.

They said I'd never have children. I ignored them and had two.

I don't know what the next adventure will be, but I've always said I'd rather go out with a bang than a whimper. I think I've done more with my life than most healthy people. Don't get me wrong, at times it's nearly killed me, but what's the point of sitting around, dying a little bit every day? Healthy people can do that. I need to grab every opportunity.

Friday 22 October 2010

A Wasted Week

Thank God it's Friday.

I've spent all week in bed, alternately vomiting, writhing in pain or peering back at the world through an opiate haze. Friends have taken my 6 year old to school, other friends have picked him up for me. His homework hasn't been done for two weeks. My Mum has spent all but one day at my house looking after me and my toddler (not to mention my 88 year old Dad who's almost totally immobile now.) My husband has jigged his work around to breaking point - yesterday he just couldn't come home early and I had to cook spaghetti bolognese while running to the loo every ten minutes or so to be sick. In the end I gave up and gave myself an injection (opiates and anti-sickness drugs) - something I hate to do when I'm alone with one of the boys.

A chronic illness is like a staircase that you just keep climbing up and down forever.

After surgery, all cleaned out and zipped back up, I thrive. I put on weight, I notice the chasm where the pain used to be almost every waking moment. I have a little more energy, can eat with a little less caution, my mood lifts, oh so slowly and I enjoy the clear fresh mind of an opiate free day.

One by one though, I start to step back down the staircase - one step at a time, each step a defeat.

A niggle of pain here and there. Step
A bit queasy after Sunday lunch. Step
A few pound lighter. Step
Pain all day. Step
Can't eat. Step
Vomiting. Step
Weight falls again.
Pain every day. Step
Can't get out of bed. Step

Yesterday, I took one of the steps I always find the saddest in the whole cycle. I had to switch from having most of my medications orally to having them by injection. My bowel is just too sulky at this stage to absorb enough for the meds to have any effect.

Eau de Junkie starts to waft through our house. Packets of needles and syringes, hidden on high shelves out of the way of the kids. Hiding in the bathroom so they don't see the needles or the blood. Sore bruised legs, stiff and inflamed from constant punctures, trying to read a story, my mind addled with cotton-wool highs, trying not to read the same sentence more than once.

My two year old endlessly comes to the side of my bed, pushes his little face right up to mine, his enormous blue eyes wide "R'you fine Mummy?" He asks, over and over, willing it to be true. Last time Mummy spent too much time in bed, she disappeared for five weeks and he didn't see her. "I'm fine sweetheart" I reply, with much more confidence than I feel. Happy, he skips away, only to come back a few minutes later, his face all concern, "R'you fine Mummy?

The 6 year old plays up. He knows more of what is to come. He alternates wildly between taking on Daddy's role when he's out at work - tucking me up in blankets, getting me drinks, looking after his baby brother and pushing his luck - answering back, ignoring me - desperately trying to irritate me out of my troubles.

Despite all of this, you might just see me, pushing a trolley around the supermarket or taking the kids to the park. There might be days when I put on some make-up, push my shoulders back and look quite normal. I park with my disabled badge and see the disapproving looks of the local retirement-squad.

I could be your neighbour, or your work colleague or your teacher.

And you might never know.

Thursday 21 October 2010

Some facts about ESA assessments

Here is a description, from someone who actually worked in ESA of what happens to claimants and how only 9% are considered disabled enough to get support.

"How are the Coalition going to take even more people off ESA/Incapacity Benefit?

For those who don’t know, Incapacity Benefit no longer exists for new claimants and hasn’t done since October 2009.
They now need to claim Employment Support Allowance, which is a whole new ball game.
I worked for two years in this field and so know a little bit about it.

When you first apply for ESA, you need to submit a medical certificate from your GP, as well as fill in a very detailed questionnaire about your illness/symptoms. You will be awarded a basic rate of JSA (£60 per week or thereabouts) for the first few weeks, upon which you will be called to an assessment with a doctor who works for the DWP (currently contracted to a company named Atos Origin). The Doctor will assess your SYMPTOMS (ie not to decide whether you are actually ill or not) and what – if any – impact they would have on your ability to work. You are awarded points for every aspect of your condition/symptoms which limits your ability to work.

At this point around 40% of applicants are told that they have no accrued enough “points” to claim ESA and their claim stops, ie they get no more money. They have to claim JSA and look for work like any other unemployed person.

The remainder, whose symptoms are more severe, will either be placed into the “Work Related Activity Group” which means that they receive a lower amount of ESA, but at the same time are expected to look for work which the DWP doctor feels they COULD do (ie bad back = you can’t do manual work but could do office work) with the help of a personal advisor at the Jobcentre. The most severely affected will be placed in the Support Group.

Only around 9% of claimants are placed in the “Support Group” which means they get a higher rate of ESA and are not expected to look for work. These are usually people with the most severe disabilities.

I often see questions on here talking about how the new Government are going to tackle the “scroungers” with pretend “bad backs/depression” etc – but having explained that the system already works this way – with only a very few people allowed to claim higher rate ESA without looking for work, how exactly are they planning to cut this down even further? Its pretty impossible to blag your way onto ESA with a pretend “bad back” or depression, believe me!!!

The only way I can see they could do this is to stop Incapacity Benefit completely and put EVERYONE on ESA. Right now, those who’ve been claiming for a while will still be on Incapacity Benefit, with the old rules, which were slightly more lax. Putting everyone on ESA and making them all subject to the same assessments would cut down the number of claimants.

But as for ESA it honestly couldn’t be tightened up anymore than it has been. There are already thousands of people struggling with quite severe and debilitating conditions who’ve been declared “fit for work” by the DWP

The following article shows just how many people considered themselves wrongly assessed for ESA and appealed.

ESA to be limited for one year

Last night, Tom Clark in The Guardian reported that 

Taking the measures one at a time, the first – and the biggest – was to "time limit contributory employment and support allowance" for one year, that is the benefit formerly known as incapacity benefit. What this means is that a disabled or seriously sick person who has a working spouse, however low-paid their job may be, will lose their personal entitlement to benefits after a year.
Singles will be able to fall back on a means-tested safety net, but everyone else will be forced to rely on the generosity of their partner. Expect wheelchairs in Downing Street as the coalition does away with the long-established principle that people who have contributed their own national insurance in the past, and then become sick and disabled, should expect a modest stipend from the state in recognition of this.

The CSR document in fact states that there will be 

“a time limit to contributory Employment and Support Allowance for those in the Work Related Activity Group of one year”
After a spending review like yesterday's, the media need to be very careful indeed about checking their facts before they print information as inflammatory as the paragraphs by Mr Clark.

When an assessment for ESA is carried out, the claimant is either considered suitable to look for work and is therefore placed in the Work related Activity Group, where they attend training and receive support to find suitable employment. If they are assessed as unable to work, they are put in the Support group and the changes WILL NOT AFFECT THEM.

Now, there is an excellent argument to be made that some of those placed in the Work Related Activity Group will have been wrongly assessed or will take a very long time indeed to get a job due to the difficulties they face. Stopping ESA altogether for these people after one year and expecting a partner to look after them financially is yet another example of the coalition drawing arbitrary lines in the sand without considering the impact it will have on families. However, it does NOT constitute the totally callous disgrace that Mr Clark initially implied and his comments will have caused extreme distress to many seriously ill people who could not work under any circumstances, however much they might love to.

There were many examples in Mr Osborne's CSR yesterday of an easy disregard for people's future's, a lack of understanding of the consequences of many of his proposals - we don't need to embroider any to make it sound even worse than it is. During these oh-so-sensitive times, the media need to do something rather alien to them - just report the facts.

Over the next few weeks I will be keeping a very close eye on this and will certainly comment on how people are affected by the change, but this morning, things look rather better than the initial reporting suggested.

Wednesday 20 October 2010

Tories to Encourage Divorce

As it is now clear from my previous posts,

that Incapacity benefit  or ESA will stop for all claimants with a working partner after a year, there will simply be no choice for many than to divorce. (If the stress doesn't lead to divorce in the first place)
Either that or the partner will have to give up work to become a full time carer and all income will then come from benefits.

This is madness and MUST change.

£5107.20 lost to disabled people living with a partner

Further to my last post,

cutting ESA for those with a working partner is equivalent to a cut of £5107.20 per year for the most vulnerable families in the UK. That has to be one of the highest burdens put on any group in the CSR.

This is disgraceful and MUST be opposed. What family could lose over £5000 a year???

Last year it cost my husband and I £9000 because I was sick. Lost work time for my husband as he took dependency leave to look after me and our two children, accommodation when he came to visit me in hospital 140 miles away, medications.

It will simply cripple families like mine.

Here's the loophole that will end Incapacity and ESA for most.

I can only hope to God this article is wrong.

I refer you to this paragraph

Taking the measures one at a time, the first – and the biggest – was to "time limit contributory employment and support allowance" for one year, that is the benefit formerly known as incapacity benefit. What this means is that a disabled or seriously sick person who has a working spouse, however low-paid their job may be, will lose their personal entitlement to benefits after a year.
Singles will be able to fall back on a means-tested safety net, but everyone else will be forced to rely on the generosity of their partner. Expect wheelchairs in Downing Street as the coalition does away with the long-established principle that people who have contributed their own national insurance in the past, and then become sick and disabled, should expect a modest stipend from the state in recognition of this.

So that's it then. Because I'm married, I won't be entitled to anything.
My husband who works two hours overtime every day to make ends meet, has to look after and care for me, has taken a less responsible and lower paid job to enable him to get time off at short notice, takes over entirely the child care for our two children as soon as he walks in the door now has to support me in every way too.
I'm worth nothing, I get no help at all, no matter what my condition?
We simply won't survive and that's that. 
I thought this blog would allow me to talk you through just why we need extra money and  the assessment process, but now it looks like there won't even be one . I'm a chattel, totally dependent on my husband for anything and everything.
I write this, with tears streaming down my cheeks in desperation.

It wasn't me Miss!! The Osborne Refrain.

So, there we have it. George Osborne has announced his spending review.

All in all most of it was so well leaked, I might as well have taken a little nap during the speech itself, but that should not limit the shock and fear today's announcements ought to inspire.

490,000 jobs lost in the Public Sector - say it quickly and it doesn't sound as bad, but that would fill Wembley Stadium 5 and a half times. With estimates of job losses in the Private Sector at somewhere around 300,000 we are well on the way to a million lives ruined, a million families suffering.

There was no plan for growth in this speech, no plan for jobs, little for investment (and what was announced was often just a very scaled down version of what Labour had already planned). The Chancellor is relying on deficit reduction, a narrative of the "undeserving poor" and a following wind to sort our finances out.

Take a little look around the blogosphere just now. There is only one refrain from Conservatives - "Labour did it" it was "Labour's fault". Well, as the latest YouGov shows, the global credit crunch may have occurred under a Labour government, but when it comes to specific cuts, the public is starting to blame this government. Anthony Wells, from UKPR says "

The most interesting question though was who people thought was to blame. 30% said the coalition and 34% said the last Labour government. Compare that to the regular YouGov tracker on who people blame the cuts in general, which is still finding 48% blaming Labour the most and only 18% blaming the coalition most. My suspicion is that this is because people blame the last Labour government when it is just genericcuts, but once specific cuts are announced they may begin to apportion more of the blame more upon the present government as they are the ones who chose to make these particular cuts.

So the claims of the "Deficit Deceivers" will start to sound hollower by the day. There is an alternative to these cuts, there is no need to for them to be this deep or this fast, or indeed target the most vulnerable. Blaming Labour when every other country is suffering the same fallout from the Credit Crunch will seem more and more ridiculous and the government will have to take responsibility for the path they took today. They have bet everything on the deficit going down and the economy improving. At some point soon the coalition are going to have to realise that they are in power, no longer in opposition, sniping from the sidelines.

If the gamble doesn't pay off, if debt rises, the deficit remains stubbornly high, unemployment rises and growth falters, this government will stand alone and will need to explain exactly where things went wrong. 

**For details of George Osborne's speech and initial reactions, please go to comments thread on

Tuesday 19 October 2010

Reaching out through the fog.

The only problem with setting up a blog about being sick, is, well, being sick.

The last few days have been pretty ropey - lots of pain and vomiting, stuck on the loo for more time than I'm off it, trying to function through an opiate haze. It's taking me about an hour to write every sentence. My bottom is like a pincushion from all the injections I have to give myself. (10 since Monday night :(  )

I just about managed to drag myself and my 2 year old over to my Mum's where I could fall gratefully into bed and hubby is having to take an hour off work to get home early for the parents evening I now won't be able to go to.

Come what may though, I'll be back tomorrow for the CSR!


On Wednesday, I will be posting as much analysis and info as I can on this thread. I'll link to any good articles and comment throughout the day. I hope you all join me on the comments section to share your first impressions and add any bits I miss.

I'll make a little prediction first though.

The drip, drip, drip of bad news has prepared the public well for the CSR. It has been unremitting since May. I'll have a little bet that on Wednesday, each horrific slash to the welfare system will be accompanied by some kind of "sweetener". On first impressions, Gideon will make you think "Oh, actually, that wasn't so bad".

If I were George though, I'd have some pretty decent plans for growth in the CSR and I'd hope to pull a few surprise rabbits out of my hat that everyone would love. I'd be hoping that after the months of bad news, any kind of "good stuff" would make the headlines over the cuts we already know about.

I'd hazard a guess that it will only be when independent think tanks start to unravel the figures and give their opinion, that we'll realise just how mean George has attempted to be.

Monday 18 October 2010

A Little Trip back in Time - NHS 1995

Oh yes my friends, I've had Crohn's a very long time.

I don't need to imagine what a Conservative government will do to the NHS, I've lived it already. The only thing that ever really surprises me is that memories are so short.

I think my first hospital stay of any length was in 1989, and over the years that followed I watched the NHS literally unravel at the seams. Of course, attitudes to patient care and diagnostics were very different two decades ago, but it's still possible to simply look at how 18 years of Tory rule had crushed our national health service to the point where it was nearly lost forever. When Tony Blair claimed the public had "24 hours to save the NHS" in 1997, for once, it was not just political hyperbole.

So let me take you back to 1995 and a ward in Addenbrookes.

I had a 12 inch abscess in my bowel at the time and it was undoubtedly the most unspeakable agony I've ever known. Virginia Bottomley, the Tory Health Minister had just hailed the end of the NHS, nurses were actually striking, junior doctors were regularly working 72 hour shifts or more and when the nurses weren't striking, they too were often working three straight shifts just to keep the wards running.

Sadly, most of the best nurses had simply left - often suffering from mental health issues after months and years of helplessness as they were forced to do a sub-standard job, to leave patients sitting in their own faeces or blood, leave them in pain or dressings unchanged. Some went to work in private clinics, some just gave up altogether, totally demoralised.

Training places had been cut year after year and we simply didn't have enough nurses or doctors to run our hospitals.

A nurse earned less than 12k a year - it was a national scandal, never out of the press.

Gladys was in the bed opposite. A lovely old dear who daily flirted with my Dad over a bag of humbugs. She couldn't sit up or hold a drink, and if we didn't do it for her, she simply went without. There was no-one to make sure she ate or didn't become dehydrated. A few months after we were both discharged, her family called to say she'd died of dehydration during another hospital stay.

Another old lady was obviously suffering from dementia, but it wasn't a dementia ward. As soon as the lights went off, she would scream and shout. One night, the nurses just left her in the toilet for two and a half hours so that the other patients could get some sleep. We could hear her pleading and crying behind the locked door.

I was on a feeding pump. My condition meant that I was dangerously underweight - just 5 stone 8 - and the dieticians had devised a high calorie regime for me that involved changing the feed every 8 hours. It never got done. In the end, my Dad and boyfriend came and lived in a camper van in the car park for a month and took 24 hour shifts, making up my feed in a blender, learning how to programme the pump and resolve blockages, just to keep me alive.

I needed a pain pump but they were all broken or being used. It took 2 weeks to get me one and the dear, dear nurse who'd spent 2 weeks on the phone pleading and begging for me got a cheer from the staffroom when she finally tracked one down.

One day, just one student nurse found herself in charge of our ward of 32 patients. Yes, it was illegal, yes it was dangerous, but she had no choice. An old man fell trying to get into bed and she had to get two other patients to help her lift him from the floor. She couldn't administer any controlled drugs and patients writhed and shouted out in pain for hours. She ran from bed to bed, but it was hopeless. After three hours, she simply marched off the ward and came back with a sister on each arm, telling them they were just going to have to stay until everyone was comfortable.

Tests were requested by consultants but not scheduled, as the systems struggled with demand. The food, outsourced to private companies under Tory plans, was a disgusting bland mush that your dog would refuse. Wards lay closed, corridors were full of trolleys, beds were scarce and even as an emergency it had taken me 4 days to be admitted.

People regularly died on trolleys waiting for a bed, hip replacement operations could take 18 months or more to be carried out, often leaving the patient with the dreadful choice : live in agony or pay to go private.

This is not abstract, nor is it an exaggeration. It didn't happen immediately - no, it started with a few "efficiency savings," but it took 18 years for everyone in the country to know someone who needed treatment but couldn't get it. 18 years for everyone to have a Mum or sister or Gran who had suffered in a broken system. 18 years for people to decide it was just not acceptable in a modern, caring society. 18 years for everyone to have spent at least one night in the chaos of an underfunded A&E department. 18 years for everyone to know of someone who'd suffered or even died from a misdiagnosis. 18 years for everyone to visit a friend left in their own muck for want of a nurse to change the sheets.

Don't let's wait 18 years this time eh?

Sunday 17 October 2010

NHS Update

.Although this is lifted directly from the Guardian it is late. It was just too important not to post on it's own thread. It confirms entirely my suspicions in an earlier post,

...."Meanwhile, sources in Westminster have told the Guardian that the NHS will shrink by "a fifth" with a radical overhaul of the treatments offered to patients and the sweeping relocation of many services because rising demand will outstrip the resources available to the health service.
Although the health budget is ring-fenced, many within the service say that cost pressures are rising far faster than taxpayer funding.
This week the chancellor will announce that £500m will be taken from the NHS to pay for cuts in local authorities' social care budget, arguing that it is better for the elderly to be in residential homes than in ward beds.
In order to save money, it has emerged NHS trusts are already closing surgical wards, no longer making available treatments considered non-life threatening such as in vitro fertilisation and denying many basic operations on the grounds of cost.
One source close to the government told the Guardian: "A fifth of everything the NHS does today will stop."
The NHS Confederation, which represents 95% of organisations in the health service, warns that even with protection of its budget the health service will still be "hard hit" by spending cuts and called for political leaders to be "frank and realistic about the impact on the public".
Nigel Edwards, the confederation's acting chief executive, said: "The public need to go into this with their eyes wide open. The NHS may have some limited protection to its budget but it still faces a potent cocktail of financial pressures."

The Guardian,

Economics for Sickies 3

On the Andrew Marr show this morning, George Osborne said,

"People in this country know we were on the brink of bankruptcy, 

Do they George? Really? With our own currency, an incredibly strong credit record and much of our debt held by UK investors were we REALLY George? It might also interest readers to know that the private sector are hoarding something just above £3 trillion - enough to pay the entire national debt off several times over.

Although the UK debt figure of 64% of GDP is a lot it is worth bearing in mind, that other countries have a much bigger problem. Japan for example have a National debt of 194%, Italy is over 100%.  The US national debt is close to 71% of GDP. [See other countries Debt]. Also the UK has had much higher National Debt. e.g. after the second world war it was over 180% of GDP.
As the deficit has been higher at almost every point in our history and was falling under Labour, unemployment was below the levels of the last Tory government and growth was strong, I await George's explanation of just how we were close to bankruptcy. 

If his hyperbole gets any sillier, he'll run out of adjectives!

Does it matter? Well, stock markets, business confidence and investor confidence rely on a positive outlook. If George carries on with the doom and gloom, he could just push us back into recession anyway.

How sick is sick enough??

So, the axe is about to fall.

Even this morning, we hear that £1.5 billion will be "saved" from Disability Living Allowance, and we know that Osborne wants to get as many as 1.5 million of the 2.4 million claiming ESA "back to work".

Most people probably don't even know the difference between the two benefits, and often in the media, they are lumped together as "Disability Benefits". ESA (Employment Support Allowance, previously Incapacity benefit) is the payment received when you become unable to work on medical grounds. After a certain length of time, the payment increases slightly as you are considered "long term" sick. DLA (Disability Living Allowance) is a benefit paid on top of ESA and is split into two components, a mobility component for those who's illness or disability compromises their mobility significantly, or a care component for those who are in need of extra care to live their lives. (ie incontinence care, help with washing or dressing etc)

Each benefit requires the claimant to fill in around 40 pages of questions, and each question requires an essay style answer - the unknowing claimant who writes "yes" or "no" or "maybe" will not get a positive outcome. The questions are subtly repeated to dig for anomalies and require the claimant to share information they probably don't share with their own partners.

DLA is incredibly difficult to get and is archaic in it's assessment of need. It is so focussed on "Disability" that it is almost impossible to fill in the forms if you have an "Illness" that equally disrupts you life. Many long term ESA recipients don't even bother applying for DLA (whether they would be entitled to it or not) because they feel it is only for those in wheelchairs or those with an acute physical deformity. There are incredibly strict criteria based on a "points" system (how degrading is that? like Nectar for dysfunction?). 

For many years, my condition was considered so serious, that I was largely left alone. For 9 years, I received Incapacity Benefit, and my only input was to fill in the dreaded 40 page form every three years. Some had to fill them in more regularly or attend an "assessment", but some logic in the system somewhere meant that I was not troubled.

Until last year.

Sometime during the summer, a letter fell through my door "inviting" me to an assessment of my condition. When I say "inviting", I of course mean "summoning" - if I didn't call to arrange the appointment within a certain time, my benefits would stop. If I didn't attend the appointment, my benefits would stop.

The letter was astounding from start to finish. I had to bring a passport with me to the "assessment" to prove I was who I said I was, and not some professional malingerer paid to act sick. I had to bring every medication, treatment and apparatus with me that I needed or might need. I phoned the call centre about this - sometimes I need a feeding tube and pump, but they're heavy - did I really need to bring it with me? Sometimes I need opiate injections, but they're not really something one would choose to carry through the back-streets of Brighton. (Unless one wanted to turn a profit!) Yes, I needed to bring everything with me - empty boxes wouldn't do, even if they had my prescription details on them.

The most ironic part of the letter was the "How to get Here" sheet. They had kindly included an itinerary showing me how to get to the appointment that included a 7 minute walk to my local train station, three train journeys and a nineteen minute walk at the other end! I joked with my family that it felt like a 16th Century witch trial - if I could make the journey they suggested, I wasn't sick enough and they would stop my benefits, if I didn't make it, they would stop my benefits anyway for not showing up!!

Well, on the day of the appointment, my Mum drove me to Brighton, my husband took a day off to look after the kids and sick with worry, we found the "assessment centre". It was a grey, bunker of a place, with grills at the windows and grills at the reception desk window. There were two intercoms to get in the door and the carpets were stained. It smelt of urine.

I handed over my passport at the window and was told to take a seat. Perhaps 8 or 9 other people sat around looking miserable and frightened, no-one really spoke. One woman was in a wheelchair very obviously missing a leg, another chap, sitting slightly apart from everyone else had Parkinson's and sat there, shaking uncontrollably. The others, looked like me. You couldn't have immediately known what was wrong with them.

After a long and unexplained wait in the gloomy, urine hole, my name was called and I struggled towards the office with three enormous and very heavy bags and a cool bag containing my immuno-suppressants that need to be kept refrigerated.

At first, the "assessor" was detached, even a little cold. She asked me to show her my medications, and I went about emptying the three carrier bags onto her desk. Drugs for pain, drugs for sickness, drugs for inflammation, drugs for osteoporosis, (caused by a lifetime on steroids) dietary supplements, liquid feed, feeding tubes, syringes, hypodermics, dressings, drugs for acid caused by the other drugs, immuno-suppressants, swabs, all tumbled out onto her desk and her attitude changed dramatically. I'd included some pictures of my poor little body a month or two before just after I'd had surgery. My arms, stomach and legs were literally covered in angry, purple bruises from central lines and incisions and my ribs stood out like the bars on the receptionist's window.

She pretty much told me the "assessment" was over at that point (I wondered why I couldn't have just sent them my repeat prescription sheet.....)

I was still on Incapacity Benefit and being assessed accordingly, but most were there as they were being changed over to the new ESA. My assessor told me it was lucky I was still on Incapacity for the time being, as to qualify for ESA was almost impossible. In her own words, she told me "If you lose one eye they tell you to use the other one, if you lose one leg or one arm they tell you to use the other. It's not until you can't walk move OR see that you qualify."

At this stage, some of you might be thinking "Well, of course I'm sympathetic, but what else can be done? How else do we catch the cheats?"

And that is the point of this post. You will never catch the cheats this way. If you are a cheat, you will pretend and you will be much better at it than someone who is genuinely sick. People like me, spend every waking moment trying to pretend we're not as ill as we really are. Cheats spend every waking moment pretending they are sicker than they really are. In fact I've often thought that the more a claimant minimises their condition, the more entitled they probably are to help. Incapacity Benefit needs proof from your GP, but some GPs know full well that the person in front of them is not really sick, but are too intimidated or disillusioned to say so.

So what is the solution? Surely "assessments" are just designed to deter as many of the genuinely sick as possible? You feel so utterly degraded, despised and worthless at the end of the process, you would do almost anything not to go through it again. It is remarkably convenient as a tool to show rich, healthy, Telegraph readers that governments are tough on the recipients of the tax they manage not to avoid, but I'm convinced it doesn't stop any cheats from getting through. If they make it unbearable enough, some will simply decide to work themselves to death to avoid the crushing horror of lining up to be judged.

Assessment implies doubt, mistrust, guilt, burden. It is entirely unnecessary, merely a contrivance to make governments look "tough on scroungers"

My solution is that if you don't have a consultant, who can confirm that you have a serious condition that has caused you considerable distress over the course of the year, you don't qualify. It surely wouldn't be beyond the combined talents of the NHS IT departments to design a programme allowing consultants to press a button, write a short precis of their patient and submit it to the DSS? Consultants would have access to x-rays, test results, medical history and surgical history. They would not have the same personal link to the patient, allowing abuse and intimidation. Sure, some would still try to cheat the consultants, but a specialist who has devoted his or her life to a particular condition is not to be fooled easily. 

The question therefore is do governments want to make things better? Do they want to stop abuse of the system? Do they want to save on the cost of assessing claimants and the vast cost of appeals when the assessor is overzealous or just plain wrong? Do they want to weed out the cheats? Or does it actually suit them to line us all up like the burden they consider us to be and try to deter us from getting any help at all? Do they actually know that cheats in fact make up a very small percentage of claims and that most people are genuinely in need of help. 

I'll leave you with this thought. I've tried for years to find out how many people suffer from a chronic illness or disability in the UK and the figure eludes me. However, a quick scan of the web tells me that around 3.7 million people have lung disease, 2.6 million people have diabetes, 180,000 people suffer from bowel disease, 5.4 million people suffer from asthma, 2.6 million live with heart disease, around 300,000 people a year are diagnosed with cancer, 1800 babies a year are born with cerebral palsy, 640,000 people live with schizophrenia, 820,000 live with Alzheimers or dementia, 19,000 receive dialysis for kidney failure, 23,000 are deaf blind, around 40,000 people have suffered a spinal injury and 8,500 people suffer from cystic fibrosis. Whilst only scratching the surface, we're well above 17 million already, yet only 2.4 million people claim ESA. That's at least 14 and a half million people living with a severe illness or disability not claiming anything at all. 

Assessments would appear to be a better deterrent than we think wouldn't they? And many, many sick people don't want to be "scroungers" after all.

Saturday 16 October 2010

Civil Liberties? Not if you're Black

I don't know why I get surprised really.

When the coalition announced that they were going to put and end to police "stop and search" powers, it was one tiny little step that lefties could celebrate. 
We all knew that for too long these powers may have been abused, that young black men were much more likely to be targeted than young white men. Hell, Richard Blackwood even does a sketch about it, joking that the police always assume he must have either stolen the car he drives or be a drug dealer.

Now, I kid you not, but the government have added an amendment to the law that reads 

''There may be circumstances, however, where it is appropriate for officers to take account of an individual's ethnic origin in selecting persons and vehicles to be stopped in response to a specific threat or incident, but this must not be the sole reason for the stop.''
The Telegraph goes on to report:
"The guideline would also mean police no longer have to record when a person is stopped by an officer and asked to account for their presence or actions.
The requirement was recommended by the 1999 inquiry in a bid to improve accountability and safeguard minority ethnic communities from institutionalised racism.
Under Section 60 of the Criminal Justice and Public Order Act 1994, a police officer can stop and search anyone without suspicion in a designated area for a 24-hour period.
Isabella Sankey, Liberty's policy director, said: ''Stopping and searching individuals without suspicion is divisive enough without telling police they can directly discriminate on the grounds of race.
''Significant progress has been made since the Lawrence Inquiry but the Home Office's planned changes will set the clock back and jeopardise race relations in the UK.''

So, the next time you hear Mr Clegg claim that tiny, tiny, fig leaf of "protecting civil liberties" that he uses to cover up breaking every manifesto commitment his party made, do remember that he actually only means civil liberties for white, British, nationals.

Friday 15 October 2010

Why Tony Benn is vital to politics in 2010

Tony Benn has always been my favourite living politician, and at 85, he now seems to be working harder than ever.

His message has never changed in my lifetime, and I can't ever remember hearing him saying anything I didn't agree with.

It fills me with pride to hear him doing exactly what he has always done, still defending the rights of workers and the dispossessed.

 ""We reject this malicious vandalism and resolve to campaign for a radical alternative, with the level of determination shown by trade unionists and social movements in Greece and other European countries."

We need socialism more today than we have for a long time. The coalition have too many policies that simply must be opposed.

The Daily Mail Song

This is easily the funniest thing I've ever seen on YouTube.

For all of us who have, at some time been the subject of some sensationalist story in this horrible rag, the link on this post is yours to distribute freely and show them as the laughing stock they deserve to be.

Do the "Squeezed Middle" deserve our sympathy too?

I have never knowingly agreed with Peter Oborne in my life, but lately I often find myself more in agreement with the Telegraph than the Guardian. The Torygraph does not recognise "Cameroonianism" (Sigh, we really need to come up with a better label than that) as any form of Conservativism and are often more vitriolic in  their opposition to the coalition than any on the shadow cabinet team.

As a leftie, I know I should shake my head in disgust at the article above, tut and snipe and rant that the "Squeezed Middle" can look after itself all the while the sick and poor and jobless are being punished and scapegoated, but I just can't.

What's more, I don't think it's a cheap shot at all to wonder whether Dave and Gideon's backgrounds can ever equip them in any way to do the job they are about to do. Why, lately, Cameron actually tried to tell us he is middle class - an old Etonian ex-Bullingdon club member related to the Queen who's wife is the daughter of a baronet really ought to give such assertions a very wide berth indeed. I am all too aware, that if you have lost your job, are facing repossession and have no savings, you might not have much compassion for 44k earners who are losing their child benefit and savings interest, but two wrongs don't make a right.

The scale and speed of these cuts is unnecessary and dangerous to the economy. Making sure everyone shares the pain seems to play well in the polls, but actually, no-one should be suffering pain on this level and no-one needs to be.

We all live to our means, very few of us have a few hundred quid rattling around at the end of the month. Those on higher incomes tend to spend more on childcare, more on mortgage costs (and therefore more in heating and lighting their homes) and more on transport/commuting. Losing three or four hundred pound a month won't be easy and may well push many mums into just giving up on their jobs altogether and staying home. It simply won't be worth going out to work. Surely this is the last thing Osborne wants?

Anyone who has read even one or two posts on this blog will know I am passionate about the poor and vulnerable and how they will be affected by these cuts. But it doesn't mean that I don't live in the real world - a world where most of the "middle class" (the real middle class not the Cameron version) are just as skint as the rest of us.