Sunday 17 October 2010

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.


  1. Hi Sue
    Best wishes from me. I have my L plates on so please bear with me as I mess things up! On UKPR I am Cozmo. In reality I am yet another Colin but felt it best to use another handle. I will be Colin46 just to get going with.

  2. Cozmo!! Lovely to see you here.
    I was so delighted when the other UKPRers came for a chat.
    Think I might be busy on Wednesday

    1. Sue Marsh iff you honestly think that working for capita, is going to change anything for the disabled or sick. They recruited you as a pr stunt for capita. And the government are not saving any money by , paying vast sums of money to capita to carry out. Medicals which are not fit for purpose. As when you pay any private company , the cards are stacked against any disabled or sick person is is all a government proper-gander stunt to be seen in public to saving money paid to sick or disabled people. The medicals are. A joke . And iff you honestly think by being employed by capita , your going to change anything for a highly intelligent lady , fool you and is a pr stunt to capita to see we employ disabled people so we look good to the public. But are no different from atos whats so ever . And shame on you for working for them. These pip medicals and the fit for work capability test want cancelling by the goverment .with emediate effect , and all your diong is being a pr stunt for capita to look good for the torie goverment . Shame on you thought you would have more sense.

    2. Pip medicals are a waste off money. Why do we need capita or atos to determine who is disabled or fit for work. Why cant the dwp. Go by medical evidence submitted to them by a persons gp. Instead of wasting vast amounts off tax payers money , to pay private company. Who lie and are not truthfull when a person Is accesed. And then waste millions in appeals . While the sick or disabled person has there benefits either cut or stopped all together. Tinkering with the systom wont work . What needs to happen stop all pip medicals with emediate and fit for work test . Stop wasting millions of tax payers money paying atos capita. Go back to using common sense where dwp writes to person gp requarding. There ilness disability . Saves money time appeals and use common sense. Then there be no need for atos. Or capita. And you sue marsh would be out of a job. Stop hounding disabled people with pointless assessments and apeels.

  3. I am ashamed that this "great " country of ours have now stopped so low to treat its citizens with such indignity.

    If this government can trust GPs with massive budgets, it does seem incongruous that we cannot entrust them as doctor to explain why people with chronic illness need support to look after themselves and may not be able to work and need financial support. Surely doctors can advise on this. A friend of mine who is such months from 60 anyway and has had mjor reconstructive surgery involving removal of part of stomach, pancreas, gall baldder and intestines, was recently instructed to turn up at the DHSS centre to show her scar to someone who claimed to be a doctor. What a waste of time and money, as you say, this subjects and degrades people with no purpose whatsoever.

    meanwhile some will dodge their taxes and spend on private health.
    When will nation realize again as Ed M said ithe difference between the price of everything and the value of nothing ?

    Our NHS and welfare support to the sick is cut, while we value celebrities like Wayne Rooney, The Apprentice, X factor etc. This is a topsy-turvey world we live in.

  4. This comment has been removed by the author.

  5. This comment has been removed by the author.

  6. Sue,

    The stats at the end are shcoking....

  7. Pam, it odes all seem upside down doesn't it. On the way home I hear GO saying that benefit cheats are "mugging" the country - will the ordinary Joe in the Street differentiate between these "muggers" and me? The language gets more inflammatory by the day.

    Eoin - Shocking indeed. Of course there is a crossover with some of the conditions - crohn's and arthrits, asthma and eczema, but there are many many conditions I didn't list too.

  8. @Sue.........Terrible, but you voted 'em in, your 'assessment' took place during 13 years of Labour government, 24 hrs to save the NHS Tony said in 1997. Anyway, you are a lovely, caring lady and deserve better. :-)

  9. Ken, you're quite right! ESA was the most disgusting thing Labour did (in my view of course) in 13 years. James Purnell is a disgrace and if Labour carry these policies forward in opposition, I will fight them to my dying breath.
    We DID save the NHS Ken, no question (I'll blog on this soon ;) ) but we allowed "scroungers" to go unchecked whilst punishing people like me. Horrible.

  10. Great post Sue; confirms what I have often thought (without personal experience, I should add) about incapacity benefits - that the "assessment" systems are demeaning and overcomplicated, without actually being effective at catching "cheats." I usually try and explain this to people who complain about "scroungers," but in future I think I'll just point them in the direction of this post.

  11. Thanks so much red_andy!
    It's been a long while since I've felt I needed to explain these things, but the rhetoric just keeps cranking up.

  12. "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."

    Why is it "archaic" Sue?

    The mobility component of DLA is clearly stated as for "if you can't walk or find it very hard to walk, or you need help getting around"

    I don't understand why you object to this criterion. Are you saying you know of people with seriously impaired mobility who have been refused DLA mobility component?

    For your interest , my daughter receives DLA mobility component, having had no natural ambulance since birth.
    She uses a wheelchair for all her mobility.

    When she moved to her current area, her new Benefit Office pressed her to claim IB ( as it then was).
    She refused because she wanted to get a job ( not permitted with IB) and gain Working Tax Credit.
    This is what she currently does.

  13. I think you misunderstand me Colin.

    By it's very name it is DISABILITY (sorry, can't do italics in comments) living allowance. Claimants like your daughter are exactly who DLA is designed to help, and that is fantastic.
    The problem is when one has a "long term variable" condition - the forms and questions themselves do not cater for these.
    The care component also assumes a physical disability rather than illness, so answering the questions is often totally irrelevant.
    What happens if you can walk one day but not another? What happens if you need care, but only 3 days out of 7?
    I said archaic, because it has not been updated to take these things into account.

  14. "The problem is when one has a "long term variable" condition "

    Yes I can undrstand that.

    I thought I saw/heard someone in HoC ask IDS to ensure that variable condition disability was catered for in the testing regime.

  15. Colin - The problem is, it never has been. ESA is actually better and despite having massive reservations about ATOS, the benefit itself was rather well put together.

    Labour have an atrocious record on this - imo they got it 100% wrong. I spent months and an entire conference lobbying for better debate on hidden disability and long term variable conditions, but no-one apart form YC was really interested (hence her being rather a favourite of mine).

    I have a brilliant proposal on how people with chronic conditions could enter the workplace - watch this space.... lol

  16. When I had a temporary diablement (broken leg) in Holland I was visited by an inspector at home after a week or two from leaving hospital (just to check that i was at home, laid up). The reason for making sure of not being a fraud is that the benefit package was that I received 100% of my salary for 6 months and then 70% thereafter. That was in the 80s so I admit I am not up to date (although I could easily find out).

    After 6 months (I had by then several ops that did not work unfortunately) I was required to attend a doctor's examination. That was the extent of the 'bureaucracy', which I thought was fair.

    I bought a car with automatic transmission so I only needed one leg and went back to work as a consultant (I'd by this time had a series of ops to replace bone in my leg from bits they carved from my hip).

    I thought the arrangements for checking up on people were reasonable and I do not resent such, but I think it would be the simplest thing in the world to ask on the form if you have a consultant and just refer to him or her.

    Apart from the degradation you suffered, how inefficient it all was Sue. I believe we are not good at admin in this country and I am not sure why that is.

  17. I blogged about Labour's use of private, bounty-motivated firms a year or so back :

    I've got no problems with attempting to attack - probably the operative word - those for whom the benefit lifestyle is a comfortable alternative to work. What's going to be the usual shambles is the implementation.

    Just pretend that some miracle occurred and numbers of smackheads and alkies, say, had their benefits removed. Let's say they turn to crime to fund their lifestyle - I know it's a far-fetched idea, but bear with me. Where are the 'extra' prison places for these people ? Because if the policy was actually implemented they'd certainly be needed.

    You'd need some, too, for the able-bodied claimants - the modern equivalent of the Elizabethan 'sturdy beggar'. There are plenty of chaps 'on the sick' who do a bit of work here, a bit there - and there are a fair few places where the informal economy of cash work touches the informal economy of crime. Not all of these guys are going to buckle down to stacking shelves either.

    If there's any effect, it'll be on the "honest disabled". Putting the job of getting claimants back to work into private hands, with a bounty for success, means that the private agencies will go for the low-hanging fruit - harassing some poor honest-but-fragile soul who they might just be able to bully back into an (unsuitable ?) job while avoiding the confident, confrontational criminal type or professional bludger up the road.

  18. Laban - Totally agree. Thanks for commenting :)

  19. This is an absolutely brilliant post. And I'm so glad to hear of others who think that the more a person emphasises their condition the less likely they are to be really sick. The only way I can cope with my illness - MS - is to pretend it's not all that bad. Focusing on it is so depressing and draining that I'd probably shoot myself if I didn't have a son to worry about.
    I too also think that the best way to 'assess' someone is via the NHS and their consultants.

    And you're right, there will always be cheats. Every system in the world has it's share of frauds, including the government itself.

  20. I think the majority of genuine ESA claimants have a similar experience with ATOS. It's fear of the unknown and knowing that it's up to this person who is little more than a secretary. She claimed to be a doctor and it was only after the assessment that I found out that she wasn't a doctor after all and she had physically manipulated my body parts without having any kind of formal training at all. This has to be some kind of fraud.
    Thankfully, I passed as 'sick enough' (how sad that is) so I get my extra few pounds a week. It's barbaric and nasty and I spent weeks terrified that they would find me as fit for work when I was clearly getting worse. (I was taken from ATOS centre in an ambulance because my liver and kidneys were failing and I was bleeding a lot.)
    I don't think it's going to get much better now.
    Great post and some very telling figures there at the end. I wish that all the 14.5 million would apply for ESA. It would give some true figures then. I was one of those people, I didn't realise that I was entitled to my independent benefits when my partner was working. It was only when he stopped working to look after me that I realised that I was entitled to my own benefits.
    Anyhow, I should stop now, otherwise I won't stop!

  21. Dont you just hate cheats, people who cheat their way into the support group and stay in it for years saying how they are too ill to work, then suddenly find a miracle cure if offered a high paying job.
    People like that should be done for benefit fraud, as well as named and shamed.
    Do you know any one like that Sue?

  22. On the whole a good post Sue. I am "disabled" after a work accident over 20 years ago. to a powered wheelchair, unable to move legs, extremely limited arm movement, serious anxiety and depression. No I'm not overplaying my hand or disability here, there's nothing I'd like more than to be able bodied enough to function better, not having to have my wife clean me up after toilet accidents etc, not having to have help in the shower..
    Anyway, your comment of "If you don't have a consultant" you don't qualify, this would disqualify me. I've been told that my conditions are for life, no hope of improvement, only slowly worsening each day. No need for me to have a consultant anymore as there is nothing they can do.

    So your system of no consultant no esa would not work in all situations, which is why I believe each person should be independently tested. The system needs change I agree, but how?

    I congratulate you on your work to date, and hopefully your work with Maximus will benefit us all.

  23. I'm "Unknown" above, I couldn't work out how to put my name in, anyway, it's Duncan. Cheers

  24. Have just been led to this blog via an article about the new assossors etc. I have an important comment to make in representationof the 250,000 sufferers of Me in the UK. ME is a much misunderstood and under rated illness with 25% of sufferers bed bound and very severely ill, and probably a minimum of another 25% totally housebound, possibly more ! I would like to say that we as the sick or disabled community give too much credence to the scroungers and discuss them too much...they are a small minority compared to the genuinely sick people and are given far too much attention by media and just used to bash the rest of us. With regard to the issue of consultants being responsible for sanctioning whether we would be entitled to benefits., there is a great flaw in this idea. I have been ill for 23 years with ME. It is a terrible and debilitating illness and people suffer terribly with it. this is attested to if you become aware that the highest rated cause of death amongst ME patients is suicide ! This illness often goes on for many years. people suffer extreme pain, dysfunction of multiple systems in the body, allergies, weakness, severe exhaustion, neurological disturbance, insomnia, lack of concentration, memory problems, the list is endless, it is a complex illness. Like myself many people endure it year in and year out. There is no useful treatment, there is even debate about whether it really exists, most sufferers family and friends disbelieve the genuineness of their condition, many friends desert you. When first diagnosed 18 years ago I visited a consultant at one of the very few ME clinics in the country. His word to me were "well what do yo want me to do , there is no treatment " I went home and carried on. I am ignored by GPs, who look through me whenever I mention it (they have no training in this illness !) I take very few medications as I react to them and they can make me more ill. I have never seen the consultant for 18 years, there is nothing to do, no treatment. The consultant I saw originally is not there anymore. I struggle on with this illness that has robbed me of my life with minimal support and medical care, as do many of the other 249,999 ? sufferers, so where would that leave me , or us, in your scheme for consultants to verify our condition ?