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Is Labour abolishing illness?

Alison Ravetz

Published 01 May 2008

The new rules on incapacity benefit stake everything on a major gamble: that a large proportion of claimants are, in fact, well enough to work

Incapacity benefit has become one of this year's favourite scare stories. Hardly a day passes without a new headline deploring its soaring costs and the rising numbers of claimants who get "something for nothing", at the expense of decent, hardworking taxpayers. We are told that we are footing an outrageously escalating bill for 2.4 million people, a million of whom shouldn't be on the benefit at all, and each successive work and pensions minister vows to be more ruthless than the last.

The true picture is somewhat different. The unreported version, which can be culled from Department for Work and Pensions (DWP) data, is that only 1.4 of the 2.4 million actually receive any payment, the rest get national insurance credits only, and numbers have been falling since 2003. The basic benefit is worth barely £3,000 a year. After two small rises in the first year there is no further increase, other than index-linking. All those who get the benefit have to pass a rigorous "personal capability assessment" (PCA) with doctors appointed by the DWP; and they can be re-examined at any time. The audited estimate of fraud is under 1 per cent - the lowest of any part of the social security system.

Nonetheless, the 2007 Welfare Reform Act is now being implemented across the country. It replaces support, as of right, for illness/disability (one of the planks of our rapidly disappearing welfare state) with a new, conditional employment and support allowance. Claimants are held on a basic allowance until it is confirmed that their capability for work is limited. This is determined by a "work capability assessment" tougher than the old PCA. Those deemed capable of one day returning to work (and the arbiters are health professionals rather than doctors) must engage in a series of "work-focused" interviews and activities. These include, among other things, "condition management", which in practice is likely to consist of group sessions loosely based on cognitive behavioural therapy. All this brings an additional slice of benefit that can, however, be cut for those who do not engage in it without "good cause" - a potential loss of 40 per cent of income. Ultimately, any whose capability for work remains limited through failing to follow medical advice, or "any prescribed rules of behaviour", face a period of disqualification. (A further provision of the act, to be piloted in nine areas, is that people served with Asbos - antisocial behaviour orders - can face cuts in their housing benefit for refusing local authority offers "to help address any problem behaviour".)

A main selling point of the reform was the great savings it would bring. It would staunch the outflow of benefits and get many people into jobs where they would pay tax and provide for their old age. This government's cherished goal is an employment rate of 80 per cent of the working-age population - though it is difficult to find any reasoned argument in support of this since our present rate of 75 per cent is, with Canada's, the highest in the world. The government accepts that employers must be paid to take on people with an illness record and, for the time being, it has pledged not to cut the benefits of existing claimants. Any immediate savings, therefore, can only come from bumping as many as possible off the benefit, shaving future benefit levels (already well in hand), and making it harder for newcomers to get it in the first place. Delivery is being farmed out to private agencies paid by results - which means, of course, the setting of targets. The next few years will be a bad time to have a crippling accident or succumb to a serious disease, particularly a psychiatric or neurological one that does not have obvious outward symptoms.

Blaming the "cheats"

The reform of incapacity benefit has been over ten years in the making, leaving in its wake a dense trail of commissioned reports. A curious thing about this voluminous material is how little information it contains on the actual health conditions for which benefit is paid. This is no accident, for the reformers long ago made up their minds that claimant numbers are too high, therefore a large proportion - usually put between a third and a half, but lately upped to 70 per cent in some quarters - must be spurious. An appeal to history is repeated like a mantra that, back in 1979, only 700,000 claimed the old sickness/invalidity benefits. Since then, money has been poured into the NHS while health care, living standards and longevity have improved beyond all expectations. People must be healthier, which proves that huge numbers are exploiting a slack and obsolete system. Who is to blame, apart from outright cheats? It can only be the self-indulgent, who fancy themselves sicker than they really are, and complacent GPs who let them think they are too ill to work.

Crucially, the reformers bracketed illness with disability. The disability lobby had long argued that "disability" was a discriminatory label imposed by society, and it was bent on removing the barriers to work that excluded those so labelled and kept them in poverty. But the bracketing brought confusions - for those with disabilities may be extremely fit (consider the disabled athlete), whereas the able-bodied can be extremely ill. More confusion arises with conditions such as "stress", "anxiety" and "chronic fatigue" that sound trivial. As for "back pain", how unreasonable is it to take time off sick for something best dealt with by a stiff upper lip and the odd aspirin? It is easy for those in good health to pooh-pooh such things, agreeing with the government that "Work is the best therapy".

The government's declared mission is to "liberate" claimants, to bring them into its "reformed, coherent welfare state for the 21st century". It seeks to overturn a culture based on the "medical model" of illness that allows them to "drift" on to long-term benefits without realising that "symptoms, feeling unwell, sickness and incapacity are not the same" - hence the appeal of cognitive behavioural therapy, which it understands as a treatment that will talk the sick into believing they can lead normal lives.

Doctors - so often the refuge of desperate people trying to find out what is wrong with them - should as far as possible be excluded from the process. Even those working for the DWP have opinions that are "unfounded, of limited value and counter-productive", while GPs are "unaware of the importance of work, the absence of which leads to depression, poor health, higher rates of suicide and mortality, poverty, and social exclusion". (The quotations are from a 2005 study from the Unum Provident Centre for Psychosocial and Disability Research at Cardiff University, whose ideas and rhetoric infuse the reform. Unum Provident is an American firm, the largest disability insurance company in the world, which is currently in litigation in different countries for refusing to pay out on some of its policies.) A private agency has now taken over the running of its first GP surgery here, and doctors dealing with disability living allowance are advised not to invite patients to explain how their condition affects them.

Features of the reform are familiar from other policy areas. First, a demonisation of a needy or vulnerable group, followed by a rebranding: so claimants become not even "clients" but "customers" (as in the just published "Commissioning Strategy" document); incapacity benefit becomes employment and support allowance; sick notes are redrafted for doctors to certify, not what patients can't but what they can do. Next come "partnerships", on an unchallenged assumption that the public sector has failed. The new system is farmed out to for-profit or non-profit-making agencies paid by results. This entails targets, and where targets are set, sanctions follow, for any who "fail to recover".

There are features of the new programme that look intelligent and humane, doubtless owing much to the efforts of the disability lobby. They include a longer and more flexible bridging period (and a back-to-work grant) between benefits and work, and a broader view of "work- focused" activities. The crunch will come with those described as not able or prepared to engage "because [of] the nature and severity of their health condition, or more a matter of attitudes, perceptions and expectations which may or may not be accurate . . . It is a question of what the claimant cannot do vs what they will not do."

For the reform stakes everything on a gamble: that a large proportion of claimants, present and to come, are fit enough to work. There seems no way of proving or disproving this, other than trying it out, at the risk of much waste of public money, and much personal grief. Deliberate rejection of the "medical model" deprives us of all we might have learned (from the wealth of data available) of the impact of illness on our society.

I have scratched my head long and hard over this reform (among other things sending out lengthy submissions to all concerned during the long consultation phase in 2005-2006) because so much in its theory and rhetoric contradicts my own experience: of chronically and seriously ill family members and friends, of several years as a Mind volunteer, and further years of peripheral involvement in action groups for chronic fatigue conditions. All this has indelibly impressed me with the courage of many who live with horrible complaints, the sheer hard work involved in their day-to-day coping, their relentless search for any amelioration, let alone cure, often at costs hard to spare from limited resources.

I have witnessed, too, and at close quarters, the hurt and stress of living difficult lives as people have to do, in a perpetual culture of disbelief and threat, where some of the most valiant are blamed for their conditions and conflated with the alleged "can't work, won't work" unemployed. For the message of the reform that comes across, for all its fashionable rhetoric, is that a person is valued only as a productive unit. Compassionate cases aside, those too ill to work are outside society and money spent on them is wasted. Sickness, disablement and inability to work have no place in a modern society - they can't and shouldn't be afforded.

No one pretends that illness is not a blight, imposing personal and social costs going far beyond the financial; but - pace the government - no one as yet knows how to remove it from the human condition. Why waste valuable time and resources on an ill-founded reform, when they could instead be used to further understanding of the real impact of illness on our society?

Alison Ravetz is a professor emeritus of Leeds Metropolitan University who writes on housing policy and welfare reform

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41 comments from readers

antileft
01 May 2008 at 13:47

It sounds perfectly fair to me. Tubby Carl "theyre out to get me" jones here is perfectly able to work- as he shows by heroically selling the big issue on the hard streets of london every day. Cutting his benefits would make him feel more dignified. Right, carl?

James
01 May 2008 at 16:52

But what's your measured and informed opinion antileft?

Slamming away on your keyboard in the creation of a jagged little aside full of subjective generalisations is hardly a useful response to a good question.

There is a chance that a lo of people on incapacity could/shoudl be working. But the notion that there are literally a million or so fakers out there costing 'us' money is little more than a hypothesis. Meaning that there is also a fair chance that most of these people couldn't/shouldn't work, or at the very least that they wouldn't be much use productivley.

We need facts, not assumptions.

Windbag
01 May 2008 at 22:37

The past 60 years of training of millions of poor, less intelligent or indeed ill people to latch onto the multitudinous teats of the State has not done anything to advance the cause of social justice but has encouraged a pervasive culture of dependency; not what you can do for yourself or your family, but what the State (i.e. every other bugger who is daft enough to work for a living or to not have 16 children they can't afford to bring up) can do for you.

And look at the results. Criminality is rife, petty lawlessness and lack of respect is endemic in our communities, every form of irresponsible and antisocial behaviour is incentivised through benefits (sorry, "credits"), and those with any work ethic or an ability to see beyond their own navel and accept that their problems are fairly trivial compared to the real suffering that exists in this world are increasingly penalised and put upon to subsidise the increasing burden of shirkers, wasters and emotional incontinents who believe their lot is that much worse than everybody else (and I do include 99% of depressives and chronic fatiguers - who certainly leave me feeling pretty f*?king fatigued - in that bracket).

Bitter? I am. Because I look at the steaming shite heap of a country that I am bringing my children up in and realise that every value I was ever taught (integrity, honesty, self-esteem, self-control and responsibility) will be a positive handicap in a country so confused about itself and its identity that it has penalised responsibility and incentivised decadence in this perverse way.

I saw Ricky Gervais do a stand-up once where he cracked jokes about chronic fatigue and the response you could expect in an African village if you pulled it as a stunt not to have to walk 15 miles to the well when it was your turn. Here we give you a cheque and bleeding hearts like Ms Ravetz will eulogise about your traumas. The very idea of it ever being "your turn" is anathema.

When will leftists accept that the Welfare state is a bankrupt concept that has brought this country to its current nadir? The lunatic belief that there is always a failure of execution rather than policy is a delusion that perpetuates this myth; eventually, and hopefully before the UK has become the complete basket case that it seems to be becoming, the majority of the populace will lose all faith in Big Government to make life "fair" (which it isn't) and today's proposed Welfare reforms will look positively benevolent by comparison.

Some people really are very ill, can't work, and deserve our sympathy. Most people on IB aren't, can, and don't - as is immediately apparent to anyone with even a rudimentary understanding of human nature (i.e. not your average leftist).

Angela Kennedy
01 May 2008 at 22:43

This is an excellent article by Professor Ravetz. She has capably identified what can be summed up as a moral panic (as per Stanley Cohen) around chronic illnesses, and the people that suffer from these (the “folk devils“). The frenzied outrage against alleged hordes of 'malingerers' and 'hypochondriacs', whipped up by both government and media, reveals itself to be based on inaccuracy and misinterpretation of the actual data.

In addition, her short paragraphs on the extent of suffering endured by people suffering illnesses which often means they are, indeed, labelled or implied as malingerers, and/or hypochondriacs (including those people unfortunate enough to be given a diagnosis of ‘fatigue’, even where such patients have been demonstrated in the scientific literature to be suffering serious neurological, cardiovascular and immunological dysfunction), effectively and compassionately conveys the tragic predicament such people find themselves in. This understanding is, in contrast, absent within government-produced and other rhetorical accounts of these illnesses. For those diagnosed with ‘Chronic Fatigue Syndrome’ in particular: the horror of suffering severe physical impairments, with their documented, devastating impact on quality of life and life chances, only to be told one’s illness is ’psychosomatic’, a result of disordered thinking, and only offered Cognitive Behavioural Therapy - when what is really needed is thorough investigation of the illness; treatment of the underlying causes of such impairments; and appropriate support - is one of the greater, intolerable tragedies facing many in modern times.

Windbag
01 May 2008 at 23:18

Angela,

CFS is a diagnosis of exclusion. That means it is a diagnosis that can only be made in the absence of any objective cause for symptoms having been found (i.e. all the tests must be normal).

If you accept I'm right about that (which I am), why would you suggest that patients with this label have "serious neurological, cardiovascular and immunological dysfunction"? Does the reporting of symptoms - in the absence of any objective abnormality - equate with serious dysfunction in your mind, or do you not agree with the diagnostic criteria?

A small point, but if you are trying to persuade people that CFS is a diagnosis made on the basis of abnormal test results then you are mistaken.

Buzz
01 May 2008 at 23:43

Angela Kennedy's review of Professor Ravetz's article is spot on and will accord with the experience of so many families where someone suffers "Chronic fatigue Syndromw or ME/CFS.

It may still often be a diagnosis made by exclusion but that is based on the ignorance and intransigence of the government and organisations responsible for funding research.

As for objective data - the forthcoming International ME/CFS Conference in London on 23rd May (see http://tinyurl.com/ytwgzd) has it in spades.

Windbag
02 May 2008 at 00:48

Buzz,

My point is that it is a diagnosis made solely on the basis of what someone tells you about how they feel.

You presumably think that that is sufficient to compensate them for not working, I don't. Whether that's right or wrong, a lot of people are going to take the p*ss. And as long as you pay them not to work they won't work.

Of course science can't fully explain eveything; if you think that represents ignorance and intransigence then can I assume you are a genius with extraordinary insight denied to mere mortal scientists? Do you think we will ever know everything there is to know, and if not do you think we should work within the confines of what we know or if any hypothesis is postulated and there is no evidence to the contrary (e.g. there are fairies at the end of my garden) should we just accept it until proven otherwise?

I can't help thinking that it is right that research time and money (that is finite) should be prioritised for fatal diseases, particularly as our scientists are apparently so ignorant and intransigent.

By the way, the conference you describe is hosted by a lobby group for people who have/purport to have ME, people who are (a) neither professionally trained in recognition and diagnosis of diease and (b) many of whom have a pecuniary interest in establishing CFS as a 'disease' (for example... in relation to benefit applications, which brings us full circle!).

Humble Life
02 May 2008 at 01:24

I suffer depression, am still recovering from a nervous breakdown i had in 97.

I get blacked out pretty much every 3 hours, dissociation occurs as my blood feels like acid, i can't gain 3'd vision but i can walk and talk. I went back to work and it was hell on high water. People can't see mental health problems, as many of the comments here utterly prove.

Your desperation to ignore the issues you can't see will simply drive people in my situation into attempting suicide.

Something I have tried 3 times when in work trouble.

Can I suggest if you have a problem with your working hours or work in general that you just move yourself over to something more meaningful and based around having to learn about experiences outside your own. And join the campaign for a living wage?

You see if I went around essentially saying " i've suffered badly therefore so must you" you wouldn't leave the house.

Stigma isn't just about pointing and shouting "mad man, axe murderer" at someone behaving oddly. It's also about expecting it to be there.

I've never met a job-center person who understands any issue remotely difficult in terms of health, the course I went on set me up to fail and ignored that I wouldn't be able to rush around.

The DWP (Or should I say Atos Origin) haven't a clue about depression or anxiety and the flux nature of it. Or should I say utterly randomised minute by minute. The doctors who interview you haven't a clue about the patterns or what it looks like. They assume without experienced knowledge.

Again, like many replies here. First have experience of this "shit" will make you fear your own kind. And the people you've surrounded yourself with will close the door on you in five seconds flat.

Windbag
02 May 2008 at 01:43

Humble Life,

Genuinely sorry to hear that you have been unwell and sorry to have been a bit bombastic in my first post.

Humble Life
02 May 2008 at 01:49

Accepted and appreciated, you're possibly the first to actually do this....

But please be warned, hurd mentality, group thought and beliefs seem more important nowadays than the views of individual and direct experience of such problems. The welfare minister may be Freuds grandson, but my grandfather flew Lancasters over Berlin. I don't know how to fly... And I can admit it!

vioxx
02 May 2008 at 18:21

The government's record of funding for biomedical research on the physical causes of ME/CFS is shameful - i.e. not a penny since the CMO said it was urgently needed, in 2002. Instead, all research funds derived from public taxation have been handed to the "Wessely school" of psychiatrists to further their careers. This in spite of the fact that randomised trials show CBT is unacceptable and actively harmful to many volunteers who drop out of the trials. And the effects don't last in those who stay the course (fewer were employed after 12 months than when the trial began). http://www.cfids-cab.org/MESA/ccpc-1.html

Research into ME (RiME) has launched a survey of MP's opinions on this government-abetted psychiatric obscurantism:

http://www.theoneclickgroup.co.uk/news.php?start=2120&end=21...#newspost

(# 2131)

caledonia
02 May 2008 at 20:36

The crux of the matter in my opinion is that the labour government might for the first time ever have a valid point.Through friends and relatives alike i see people living the life of riley whilst falsely claiming incapacity benefit including a 40 year old man who has claimed

I.B his whole adult life citing back trouble but still managed to father eight children that the taxpayer is now paying to bring up.

treborc
03 May 2008 at 01:15

God windbag your about two years behind the times the WHO have accepted that CFS is a illness which can be diagnosed, what a pity your such an idiot.

How about me then anyone think perhaps I'm a fake, I have a bad back, sadly for windbag I have a reason for my aching back, I broke my back in an accident at work, oh yes and cut my spinal cord, oh yes and lost my legs, oh yes and lost most of the use of my arms, oh yes and now have kidney failure oh yes and now have liver function problems.

Is that enough to allow me to die at home, I worked for 28 years for one company, had the accident on a Sunday was sacked on a Tuesday.

I've been deemed able to work, so god help anyone else.

caledonia
03 May 2008 at 02:00

treborc i sincerely hope my comments did not offend you and if they did i apologise unreservedly my point was merely that there are people out there who exploit the system. I fully accept that threre are people such as yourself who are genuinely unable to work and who have been treated disgracefully by the system despite this.

Superhuman Diva
03 May 2008 at 03:18

The author has written an excellent article. I agree with everything she has said.

Windbag, you have almost rendered me speechless!! I hope you never find yourself in my situation. I worked for 30 years before I became too ill to do so. For 15 of those years I worked despite numerous operations for cancer - about 35 ops. It was only when I got secondary cancer followed by a number of other serious medical conditions - (I now have 22 in all )including permanent damage from chemo and radiotherapy that I ceased to be able to work. My illnesses are incurable but, advances in medical science mean that I can be kept alive for longer.

I have constant pain from damaged nerves, but, nerves do not swell so no one can see this. I just live with it.

I have been abused in the street in my wheelchair. It seems to be fashionable nowadays to abuse the sick and disabled, despite the lack of any real evidence to support the belief that we are all simply scroungers.

I can't commit suicide because of my religious beliefs. But you maybe assured that for for the last couple of years I have spent a great deal of time simply wishing I could die; not because of my illnesses but because of the current attitude of society and the sheer difficulty and misery of trying to subsist on wholly inadequate funding.

bendy girl
03 May 2008 at 14:13

It is wonderful to see a media article about Incapacity related benefits which does not label all claimants as 'scum' and imply they are either out and out fraudsters or not worthy of help.

Whatever the rights and wrongs of the welfare state, health problems can and will happen to anyone at any time in their lives. The problem for many is that those with chronic illness or disability tend to be very hidden from society leaving visible those who abuse the system deemed as representative of all. Official fraud statistics indicate that this is probably the other way around, but there is no separation by media or politician of the 'can work won't work' brigade from those claiming for health related reasons.

It will only be when we have an open and reasoned debate, with mass participation particularly from those reliant on such benefits that the outlook may change.

Bendy Girl

http://benefitscroungingscum.blogspot.com/

Copepod
03 May 2008 at 15:19

A few years back, I helped to set up a health walks scheme at a country park. Initially, we were slightly surprised at the hig ratio of mental to physical health issues in the people who came. Many were young retired, who wanted to be active to prevent physical and mental health problems. However, we could not have predicted how popular the walks would be and how many people with mental health problems would start coming along as conservation volunteers, either regular monthly sessions or as individuals to work alongside ranger. As one of them said (paraphrased as I didn't write it down at the time!) "I'd rather go home knackered, muddy, dirty, tired, aching than sit around talking at the clinic" So, health walks, then conservation volunteering, perhaps next stage paid work?

Jenny
03 May 2008 at 15:44

I thought Alison Ravetz’s article was well-expressed and humane. It is good to know that there are some who are willing to question what the government is doing to the sick and the disabled, and who resist the trend, encouraged by politicians of all parties, towards scapegoating some of the most unfortunate in our society. I find it hard to believe that this scapegoating is happening under a Labour government. As a post-war child, I was brought up to believe that caring for the less fortunate was an essential part of being human. That ideal seems to have virtually been lost, and our welfare state is being dismantled under our noses and with very little opposition. Thank you Professor Ravetz!

carefix
03 May 2008 at 21:29

It is a shame that people are forever commenting that there are too many people on Incapacity Benefit when what they really mean is that the caseload is too high. And yes, there is a difference. You see the caseload can increase for two reasons:

1) More people make a claim in a given time period.

2) The people claiming stay on for longer.

For example: 1 man staying on IB for one year has the identical effect on the case load as two men staying on for six months each (over the same year).

This means that changes in caseload can be effected by increasing numbers of successful claims or increasing durations of claims. Which of these has happened with IB?

Well in terms of successful claim numbers, relative to the numbers of people paying the necessary NI contributions, the numbers making a successfull claim has more than halved between the early seventies and today!

I was reading a very interesting paper the other day - no reference to hand - which demonstrated that almost the entire increase in caseload was due to an increase in the duration of short term claims - typically less than a year originally. It turned out that government initiatives 1) to stop people getting onto benefit and 2) trying to get them off benefit - was actually the cause of this increase in duration of claims! For example: When the All Work Test was Introduced the extra time spent in waiting to see the doctors for the test, waiting for the result and appealing the case added significantly to the short term claim duration. Before this of course your GP just sent you back to work!

ESA looks as though it will be a similar own goal. It is largely aimed at getting short term claimants back to work. But instead of one AWT (now called PCA) there are going to be 2 PCAs (now called WCAs) and claimants have to attend a series of six monthly work focused interviews and agree to Work Focused Activities and most of this is to be run at great cost to the taxpayer. Worse still the government have over the years greated a massive private industry which is making a fortune out of the taxpayer. In order to maximise its profits it requires that there be a large number of IB (hence ESA) claimants!

Can any cynic now tell me what is going to happen?

-J

ians12
04 May 2008 at 07:05

I'm not a great fan of some of the stuff coming from Leeds Uni, but by God, this lady makes up for it! She makes a very good argument for "looking again" at the claims and aspirations embodied in the Welfare Reform Act. The bottom line seems to be the bottom line, its not about getting people into work, its about cutting costs.

EleanorR
04 May 2008 at 15:35

Reducing the welfare bill for disability is easier than it may at first appear. Severe and chronic disability leaves many sufferers with a life of immobility, inconvenience, poverty, pain, loneliness and despair. A significant number would be interested in taking advantage of a government-appointed assisted suicide service, should such a service be offered. Suicide would be administered humanely, in a controlled environment, by means of a fast-acting medicine.

This programme could make significant inroads into the Incapacity Benefit bill with knock-on savings to the Carer’s Allowance bill, together with a large reduction in demand for council services and future pension provision. The scheme could easily be extended to the long-term unemployed and elderly, many of whose lives are also blighted by poverty, disability and hopelessness. Later, an element of compulsion could be added.

Economic advisors warn that the UK economy may be about to enter its’ deepest recession since the Great Slump of the 1930’s during which one quarter of the British workforce was unemployed. There is potential for a huge increase in welfare demand. This programme would help control the inevitable growth in welfare spending by delivering a professional service to those customers who need it most.

vioxx
04 May 2008 at 19:33

Perhaps Swiftian thinking also lies behind the mass medication of elderly Alzheimers' patients with antipsychotic drugs that double the chance of premature death.

emmagold
05 May 2008 at 01:55

I think one of the problems with this issue is that some illnesses (or disabilities) are less obvious than others. This applies especially to PSYCHIATRIC illnesses/disabilities which are virtually invisible (as, of course, are conditions such as hearing impairment). The tabloids are very fond of reporting cases in which someone claiming Incapacity Benefit (Inc Ben) was seen engaging in some sort of strenuous physical activitiy; but maybe this person is hearing-impaired or suffering from, e.g., clinical anxiety (as I do; and all these so-called "reforms" exacerbated my condition considerably until, with great relief, I reached my 60th birthday and was therefore able to claim my pension. This was also one of the very few occasions to be thankful for the fact of being a woman since a man would, of course, have had to wait until he was 65). But anyone seeing me, e.g., walking vigorously would wonder why I needed to be on Inc Ben; not realising that, due to my anxiety, I am unable to cope with pressurised work (something which nearly lost me a job in September 1989 for reasons it would take too long to go into).

I would also make the point that considering what an individual CAN do, rather than what he/she can't, is much less straightforward for someone with a psychiatric condition. Someone in that situation can obviously perform any task for which he/she has the intelligence, experience, and qualifications; but he/she would experience far more difficulty with less obvious aspects of work. I've already mentioned pressurised work; there is also what one might call the social aspect (everyone else having friends but you not having any; e.g. at the job I mentioned in respect of pressure one of my colleagues got married and invited EVERYONE EXCEPT ME to her wedding), or any psychological trigger which could cause an individual to "freak out" (and probably lose their job) but which couldn't be predicted because it would be IN REACTION TO something someone else had said or done. For all these reasons these new proposals could cause considerable hardship for anyone suffering a psychological condition. Please think about these points, made by someone who has personal experience, before condemning people on Inc Ben as "workshy scroungers".

leonardo
05 May 2008 at 15:32

Windbag wrote :

"CFS is a diagnosis of exclusion. That means it is a diagnosis that can only be made in the absence of any objective cause for symptoms having been found (i.e. all the tests must be normal).

If you accept I'm right about that (which I am), why would you suggest that patients with this label have "serious neurological, cardiovascular and immunological dysfunction"? Does the reporting of symptoms - in the absence of any objective abnormality - equate with serious dysfunction in your mind, or do you not agree with the diagnostic criteria?

A small point, but if you are trying to persuade people that CFS is a diagnosis made on the basis of abnormal test results then you are mistaken."

Well, Windbag, think of this. It was only after the NICE guidelines were published last August that GPs will be really doing any tests because prior to that they were allowed to be very subjective and were encouraged NOT to do too much investigating because it may 'encourage poor illness beliefs'.

The tests done now are very basic bearing in mind that the WHO recognise M.E. (don't forget that the guidelines for CFS include ME) as a neurological illness as do our government.

Therefore, there will be an awful lot of people who do not have ME/CFS at all but have never been fully investigated for other difficult to diagnose conditions. I personally feel that GPs should be calling in all patients who were given the diagnosis prior to last August to do the investigations which may show another illness.

I have a chronic illness. Until I had a camera inserted into an oriface, which shall remain nameless here, everytime I had any investigative tests, the results came back as 'normal'.

The cause of the illness I have is not known. It causes systemic symptoms which cannot be explained either. But there you go.

Please have some compassion and insight and try to extend your knowledge a bit more. I hope you are aware that there are people who have died of M.E.

TwistedWitch
05 May 2008 at 17:27

The author of this article is to be applauded for her honest and forthright approach to this debate. This Government and indeed more than half the posters here, are clearly of one mind. Are you all descendents of Hitler I wonder? EleanoR, my eyes widened with disbelief at your post as at first I thought you were being tonque in cheek and fully expected a note of sarcasm on the bottom, but tragically you appear to have been serious!

Windbag, although you didn't advocate suicide for the chronically sick of this country, that may well have been because it never occured to you as a cost cutting exercise, but your attitude was nonetheless similar. My mind wanders back to the poem by Pastor Neimoller :-

First they came for the Communists,

- but I was not a communist so I did not speak out.

Then they came for the Socialists and the Trade Unionists,

- but I was neither, so I did not speak out.

Then they came for the Jews,

- but I was not a Jew so I did not speak out.

And when they came for me, there was no one left to speak out for me.

Now substitute the first two lines,

First they came for the single mother, but I was not a single mother so I did not speak out

Then they came for the sick and disabled but I was neither sick nor disabled so I did not speak out.......

Finally EleanoR and Windbag, they will come for you and there will be no one left to speak for you.

Perhaps EleanoR, if one day your life should go to hell in a handcart and you should dread opening your eyes in the morning wondering what new symptom should affect you, how you will eek out your meagre benefits, will you make it through the day without pain, or despair; one of us 'sick or disabled' will pop ourselves into our government funded speed buggy and pop on round to yours with a nice large suicide pill and you can do the decent thing and off yourself so there will be more money in the pot to spend on pointless Iraq wars and money grubbing selfish bar stewards like yourself.

EleanorR
06 May 2008 at 11:11

My previous post caused some confusion. Let me explain.

The new policies will add stress and complication to the lives of those already made unhappy as they struggle to cope with painful and debilitating conditions in poverty. The new forms to fill, increased household surveillance, mandatory pro-active interviewing techniques and reduced benefit entitlement will significantly increase pressure on the, already overextended, sick and disabled.

The sick and disabled can choose to opt out of the new, harsh benefit environment. However, for most, this would lead to slow death by starvation - a death without dignity.

The government can extend choice and create new opportunity by offering, in a controlled environment, termination by consent, administered by professionals, The DWP could offer a quick, painless service to those customers most in need.

Such a policy offers a new, innovative and humane approach to controlling welfare spending.

It must be recognised that the severe economic downturn will quickly lead to a large increase in unemployment and a consequent fall in tax revenues. Simultaneously a rapidly ageing population places increasing demands on government services and intolerable pressure on welfare spending. It is natural that the policy of termination by consent would be applied to other groups, extending choice for the long-term unemployed (more than 6 months) and the elderly. I have detailed some of the cost savings in my post above.

In an age of resource depletion and overpopulation, this policy will help the UK fulfill environmental obligations and thus tallies well with the government's green agenda.

Any government has a duty to find value for the taxpayer and I am sure you will agree that benefit entitlement entails responsibility as well as rights. That is why, in due course, an element of compulsion would be introduced.

frenetic
06 May 2008 at 12:03

New Labour’s policy towards those on benefits has always been of a punitive nature: one should recall one of the first acts of the 1997 Blair Govt was to cuts single parents benefits, the much vaunted New Deal has generally offered poor quality training, often under coercion for the claimant, yet making millions for the private training companies, and does anyone remember Brown’s Individual Learning Accounts (ILA) which had to be scrapped due to massive fraud. Benefits have also fell well below that of earnings, however it is with the Welfare Reform Act 2007, and the Freud Review/ Welfare Green Paper, that we may see the end of a rights based welfare system in the UK, coupled with a move to a privatised and minimal U.S model where the individual is blamed for his or her incapacity.

Figures from the main disability welfare charities indicate that most IB claimants will be at least 1.85 worse off but some severely disabled claimants may lose up to 7.00 pounds a week, (though I suspect much more), and as Professor Ravetz notes face an ever more harsh welfare regime. While Purnell will push through the the Freud Review, (compiled in only twelve weeks!) where private companies and charities will be paid only by results increasing pressure on advisers and ensuring even more pressure and an increasing level of invasiveness in claimant’s lives. One more alarming reform is that a claimant can still be monitored, advised, etc by private companies, three years after they first get a job! companies, making claimants into outlaws .Apparently according to Freud those on disability benefits are not ‘hassled enough’

Sadly, the govt can exploit a general lack of knowledge most people have about benefits, welfare etc. It is certainly no ‘soft touch, It is already extremely difficult to claim benefits such as IB: the process involving stringent eligibility criteria, massive application forms, regular interviews and 'tough' and invasive medical tests, amongst the most stringent in Europe. In terms of fraud among people claiming IB, it has described by the DWP as 'negligible'. Further, a report commissioned for the DWP found that the use of benefits sanctions can ‘worsen existing health problems’ and ‘provoke new mental health problems’ While, in Australia, major charities like the Salvation Army refused to work with similar welfare to work programmes.

The legislation on which much of this policy is based (see above), has also been criticized as ‘rushed, prejudiced and ‘short on detail’, with the government also ignoring the many submissions to its consultation’s which were critical of the reforms. Finally there are good reasons why IB is paid at at a higher rate: they are ill and disabled people who have extra needs. IB replaced single payments, which were for needs like extra laundry after wetting the bed or extra heating as many cannot go out during the day.

It has been argued much of the ideology behind these reforms is based on the neo-liberal notion of the 'active citizen' which is sweeping the world. Only by working or training or studying can a person be 'good' but what about those who just cannot work? Indeed, on Wikepedia, welfare reform is described as a ‘movement’ particularly so in the ‘Anglo Saxon’ economies of the U.S, Australia, and the UK. One could argue these are not policies for 2008, but are more suited to 1888: the politics of the workhouse.

These are indeed draconian reforms, yet these proposals seem rushed and ill thought out, never mind the sheer nastiness and invasiveness of the US style 'blame the poor' nature of them. Indeed, a whole new ‘welfare industry’ is being created on the strength of 13 weeks research! Yet, the left of all persuasions has largely been silent on these changes, with a few exceptions such as John McDonnell and Jonathan Rutherford of Compass. Brendan Barber of the TUC has even endorsed the WRA!

Surely it is now time to challenge these unjust and cruel reforms, when the general public becomes aware of the assault on genuine disabled people, this will I am sure become a hot issue like the 10p tax issue.

Lots of info on the reforms can be found here

www.swansheffield.org.uk

Stephano
06 May 2008 at 12:59

It's simply not convenient for society to have chronically ill people, much less chronically ill people for whom a definitive, 'black and white' test that proves or disproves illness, does not exist.

Windbag and others- you might like to consider that the history of western medicine is littered with cases of serious illnesses once scornfully derided as false. Multiple sclerosis, an illness that shares quite a few characteristics with CFS, is an excellent example. Until they discovered de-myelination in the brains of sufferers, they too were just neurotic malingerers.

Sophisticated, empathetic people/governments will actually consider the lot of sufferers and recognise that they do not choose to give up their previously full and active lives for lives of ceaseless misery, poverty and uncertainty.

Lazy, simplistic, ill-informed people/governments see only some deranged, warped concept of advantage. What advantage, you mindless imbeciles?As if we rub our hands with glee and make for that massive social welfare benefit, discarding the busy lives we once led.

The WHO did not define CFS as a neurological illness because it was bored that day. The CDC did not proclaim the legitimacy of this condition because it had nothing better to do. For those who care to look, rather than deriving glib, subjective meanings from phrases such as "diagnosis of exclusion", or rather than using Ricky Gervais as a selling-point for your position, there are massive amounts of evidence and massive numbers of doctors/specialists that point to the very real and destructive nature of CFS.

So- rather than worrying about all the 'scammers', be thankful you have your health and aren't subject to the hysterical, idiotic accusations hurled your way. I can tell you that survival is hard enough without them.

I have spent the last 12 years since I became ill focussing on what I can do, and how I can work more, rely on welfare less, and lead a fuller life, despite the limitations of a devastating illness. All I can do is shrug at the sick irony of people inferring I am somehow ripping off the system.

emmagold
07 May 2008 at 01:30

I'm totally astonished that no one has commented on EleanorR's comment of 11.11 on 6th May. Unless I've completely misunderstood she seems to be suggesting voluntary euthanasia - which would eventually become COMPULSORY!!!! - for Incapacity Benefit claimants; even though I personally agree with VOLUNTARY euthanasia, for people suffering from conditions they find unbearable, the concept of COMPULSORY euthanasia goes back to the Nazis! And yet she describes this as a humane way of dealing with people affected by the new policies; all I can say is thank goodness I'm old enough NOT to be affected by them!

She makes the point that the (inevitable?) rise in unemployment will (obviously) lead to a reduction in tax revenue; and adds that it is the duty of the Government to find value for tax-payers. In that case why isn't she condemning the FAR higher expenditure on the Iraq war and the Olympics; not to mention all the revenue LOST via tax evasion/avoidance? I'm absolutely flabbergasted by her views; unless she's the first to volunteer for euthanasia if she ever becomes ill/disabled (and no one, even her, can say definitely that they never will) she would be a total hypocrite. In fact even if SHE would be willing to volunteer for this she has NO RIGHT AT ALL to say that other people should do the same!

leonardo
07 May 2008 at 07:15

Perhaps EleanorR will find comfort in knowing that some people have died of M.E./CFS. Perhaps EleanorR would enjoy reading the website about the late Sophia Mirza. www.sophiaandme.org.uk

frenetic
07 May 2008 at 10:55

Btw I would like to add something about the mainstream media and in role in constructing the moral panic that welfare is out of control and that 'something should be done'. '

One see's this in how the the media debate (including in the ‘quality newspapers’) on the Welfare Reforms: it has been limited or even misinformed. A clear example of this was the verbatim reporting of Matthew Freud’s claim that 'G.P’s decide who get benefits', they don’t:, a private company Atos Origin contracts private doctors to carry out medicals. I am also aware of interviews with grass roots disability groups being pulled from the media because of pressure from ministers.

The majority of the media approach to claimants is to demonise and label them as scroungers, fiddlers, as non productive, the narrative being ‘it’s their own fault’. This has an impact on all claimants, many feeling harassed and targeted even if they have never done anything wrong. Indeed recent research has shown how Govt and media attitudes and policies to claimants etc, has skewed public perception of this group, often alluding to a ‘benefit culture’ or 'scroungers' Further, claimants themselves are very rarely consulted and coverage of their own views is limited if non-existent.

The govt's constant benefit fraud campaigns which cost millions and sometime seem like the sort of stuff you would have seen in the former Eastern Bloc, adds to this public mood, ensuring many people to deem , that 'they are all on the fiddle,' yet as above, even the DWP says fraud in IB is neglible.

btw, I think eleanorR is angry and being sarcastic, she is trying to jolt us into action or compassion. though many disabled people are having bad thoughts about the future amd yes some are comtemplating 'ending it all' because of the ruthlessness of these reforms.

as a consequence of these reforms.

vioxx
07 May 2008 at 11:03

I thought EleanorR was savagely ironic the first time (4 May), but literal repetition (6 May) disproves that. Yes, s/he really is a vile moron.

kez
07 May 2008 at 13:06

Oh, you guys! You're all so sweet. EleanorR kind of has the right idea but doesn't think of the bigger picture. A humane government assisted suicide service should undoubtedly be offered to anyone who wants it. Let the market rule - supply and demand. And don't doubt that there would be takers a plenty from doom laden teenagers, to arthritic grandparents worried about burdening their children with their continued existence, Alzheimer's sufferers, the lonely, heartbroken, dispossessed, disenfranchised, the ugly, insane, deformed, crippled, obese etc. All those whose lives add nothing to the sum total of human happiness or creativity. And let's not fool ourselves that life is so wonderful and sacred that it must be prolonged at all costs. The choice to die at a time and a place and in the manner of one's choosing is the very height of 'civilisation' or would be once we can trudge like cattle past the emotional knee jerk reaction to the concept. And why stop at merely allowing them to make their own choice? Are they best placed to make such a decision? Are they medical professionals or economists or ministers? No they may well be too close to the situation to see that their non-existence may well have far more reaching and profound benefits than their squalid little lives ever could. We are all members of society with a stake in finite resources of the end game (regardless of what Maggie once thought - ooh, speaking of the mentally infirm - she could perhaps be our trial run). So yes, undoubtedly an element of compulsion could (and should) be built in once an unimaginative bovine public has come to witness first hand the benefits of such legislation as stated by EleanorR (massive welfare savings, lowering of unemployment figures - 12 months JSA and 'Strike! You're out!, a way for the NHS to finally balance their books without having to resort to developing holiday snaps on the side, or charge exorbitant car parking fees, or have McDonalds 'restaurants' on-site, meeting the otherwise unreachable green agenda, a way of getting rid of those hoodies who according to the tabloids are busy killing each other and innocent bystanders anyway)

However, these are all cost saving measures. I am much more interested in how these ideas could be made into positive money-spinners. I work for a TV production company that makes some of the best known and well loved so-called 'reality' shows. Frankly, we're running out of steam. Our formats are tired and lacklustre and the public is screaming out for more imaginative entertainment. The late, great 20th Century social philosopher William Melvin Hicks suggested using terminally ill patients as stunt people in movies. I suggest evolving this concept slightly and televising gladiatorial combat between those compelled to take part. I want to see the mentally ill, the unemployed, the Welsh, the dross, jetsam, flotsam and dregs of society, those with bad backs, dodgy knees and psychological disorders fight it out in an arena with a variety of weapons before a live audience. This is the ultimate ratings winner! 'Tonight a middle aged bipolar man with a hip replacement takes on an obese 23 year old woman suffering schizoid delusions. Choose your weapons!' The prize - a lifetime's free healthcare on the Caribbean paradise of your choice. Man, those Morecambe and Wise Christmas specials viewing figures from the 70's would be nothing compared to this. We could even change the name of my employer to 'End 'Em All'

It's a small step from the Apprentice I think you will all agree. And please, none of your namby pamby prurient 'ooh how horrible' comments. If you watch reality TV you are part of the 'problem' and a bit of you wants this - you know you would be curious, intrigued, or outraged enough to tune in. There is a long and venerable tradition of gory public entertainment from Roman ampitheatres to public executions to the Victorian family Sunday outing to Bedlam to driving slowly past an accident on the M25.

'Know thyself' said the Greek oracle at Delphi. I do. Now it's your turn. Join with us and make this a reality. Suffering will always be there. Only a fool would turn down the opportunity to make money and have fun from something that happens anyway. Have a nice day!

leonardo
07 May 2008 at 20:58

You know, I think there's a psychiatrist called Simon Wessely who may be able to help you, Kez. You haven't got any other symptoms like... do you hear voices? Go for it. Get the cure.

EleanorR
07 May 2008 at 21:47

Although my proposal has met with a mixed response here I sense it chimes with the public mood. Out in the streets there is a genuine appetite for radical welfare reform. It is time to offer greater incentives to encourage people off benefits. It is right to demand more from the recipients of state handouts. We need fresh thinking and innovative approaches - we need to think the unthinkable. This is a policy whose time has come.

I understand the scheme would be controversial at first and unpopular in some quarters. However, we would be careful to site the network of treatment centres outside the main urban areas, away from the public gaze. This project represents a golden opportunity to redevelop brownfield sites and would provide a much-needed shot in the arm for the beleaguered construction industry at a difficult time for UK PLC. By creating real jobs in areas of low employment the programme would play a vital part in boosting the rural economy.

We would be keen to tap the experience, expertise and innovation of British industry, looking to establish private sector involvement early on (Group 4? BUPA?). Ideally, this project would take the form of a public/private partnership.

The treatment centres would need excellent public transport links so members of problem groups earmarked for cessation can easily access the sites. This represents the ideal opportunity to make a significant investment in extending the rail network. It truly is a win-win situation.

Pilot projects, offering a kick-start scheme, will be established in a few key areas where there are high claimant levels before rolling out the new deal nationwide.

David Freud, an official advisor to the DWP's welfare to work strategy, was recently reported as saying “up to two thirds of people claiming incapacity benefit are not entitled to the state handout”. The withdrawal of benefits from two-thirds of disability benefit recipients would result in the slow, agonizing deaths of hundreds of thousands of the UK's most vulnerable people. They will die of starvation and cold in their own filth. My proposal offers them a quick end. Think of it as a return to honest government.

leonardo
07 May 2008 at 22:11

www.sophiaandme.org.uk

It's O.K. ,EleanorR. REad it. It's already happening. Did you think you were the first to think of it?

johannine
08 May 2008 at 01:46

government's cherished goal is an employment rate of 80 per cent of the working-age population has been achieved here [as well as elsewhere by a neo con [con] of book keeping the unemployed numbers into sickness numbers .

back in 1979, only 700,000 claimed the old sickness/invalidity benefits. now 1.4 million[officially 2.4 but 1 million dont get any benefit's ],the book keeping is clear ,to claim low unemployment figures is a book keeping accounting [not job creation].

But we live and die by the numbers fictions, we have low unemployment by lie ,but the numbers themselves have lied ,govt dont lie does it?

noting the rise in numbers have risen sharply scince the inception of the war on drug users [that govt lies about as well] ,

in making criminal one percent of the population every year those going to jail free up the job market , as 'new' jopbs are 'created ' [plus gives prison officers police ,lawyers m debt colectors jobs , BUT distracts police from policing real crime [theft rape , breake and enter, fraud ,child molestors ,etc].

but the numbers dont lie , unemployment is down, long term unemployment is down, we judge the po-lie-trick-ians by the numbers , thus we get the policing we deserve ,and now with re-instaling the class b onto a plant we soon will see some new numbers

[hopefully getting brown [knows] out of his comfort zone and serving not big buisnesss but the people, but he cant see that far ,lets just keep kicking the numbers arround [shuffeling the deck chairs on the titanic]

its all just like a magitian making us watch the numbers on the left [while changing the numb-ers on the right.] ie rule by numbers.

just watch the numbers 'spin'.

t
15 May 2008 at 13:40

hi i am one of theys figures on icapacity benfits has learnning disabilty . and a fisacal back pro blem due to my back. i have worked most of my life.apart from two month spell of being unployed . wher i fond a job my self . now that am having trouble with my back . i am having trouble with my mobility. i went for an assent of one of those so called agencies set up by Department of works and pensions. where i done a so called interview. i took documents by specialists to prove i have problems on a day to day basees . but he was not intrested in them. and also the report he done on me it says i answered questions on it . buthe never asked halfthe qustions on the assessment papers . so it looks to me they have false a fied information about me.that was physical and mental assessment but he only done amental assessment and false fied my forms about aphsical problems . and also funny enuoght all happened when the goverment where doind a assessment on people claiming benefits for the figures .just before the local election. so now have appeal put in . aGL24 so in sense i am not claiming incapacity benefits . so when DWP recieved my appeal . i recieved aletter back saying jew to a very hi appeal situation i will have to weight. inline a appeal date. the issue number whent in to its thousands. which has caused no end of sleepless nights of worry . which has been no end for fun forme and now when need help of the state they leave you drawn and quatered and left todry.

now after that a have to put aGL24 appeal in

Gavin, London
19 May 2008 at 23:53

I was infected by HIV in 1983 and diagnosed in 1985. I am fortunate as I am a "slow progressor" and by dint of this and personal determination not to give up I was able to continue working full time until 2004. In this year the fatigue had become so severe following treatment failure that I could only work part time at my business. In 2006, as the symptoms worsened, I became unable even to manage 15 hours work a week and I went "on the sick". I received SSP for 6 months and then I made a claim for IB when I was made redundant, passing the PCA at the end of that year. I also applied for DLA on my doctor's advice and on appeal I was awarded the elements appropriate for my condition.

I would very much like that things were different. Being 50 and feeling 70 is hard but every time I try to pretend that I am not ill and overdo things I suffer real consequences and wish I hadn't. Slowly and reluctantly I am beginning to accept the reality of my situation. If I take it easy I am OK, if I push myself too much I become quite ill and exhausted. It was hard to explain this to my Personal Advisor at JobCentrePlus. I was however able to show her how to use her computer terminal more efficiently and I helped, at her own request, with her spelling, even though my own is not the greatest.

Do I still have something to offer the community? Obviously I do but the serious practical limitations placed on me by a chronic lack of physical and mental energy and stamina make it impossible for me to fit into any official or approved position that I know of. Instead I act, when I can, as occasional carer to three sick elderly friends (aged 66, 76 and 106) and to my partner who has full blown AIDS and associated cancers.

Black humour and wicked satire such as ElanorR's and johannines's help me keep smiling :-)

vioxx
20 May 2008 at 17:02

http://petitions.pm.gov.uk/NHSCBT/

Sign a petition

We the undersigned petition the Prime Minister to limit the promotion & delivery of Cognitive Behavioural Therapy [CBT] within the NHS according to available evidence.

Submitted by S. Forrest of NHS

leonardo
25 May 2008 at 15:43

Gavin of London says:

'Black humour and wicked satire such as ElanorR's and johannines's help me keep smiling :-)'

That is good. I am sorry that Gavin is ill and pleased that he has not reached the stage of illness that people like Sophia Mirza reached. I doubt if the severity of her illness left her with a sense of humour. I doubt if she found the way she was treated and sectioned by the psychiatric profession and social services funny-in ANY way. It is not funny to be so physically ill that it is only death which establishes that you ever were physically suffering and it wasn't all just a behavioural disorder.

Gavin is lucky to have a diagnosis which does not leave room for the psychiatric profession to play their silly games. Here is an example of THEIR fun:

www.sophiaandme.org.uk

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