Wednesday, 18 September 2013

Welfare for the people, by the people. The Report

Way back in May 2011 I wrote this post about living with a long term illness or disability and working. Here's an excerpt :

"If you don't have MS or bowel disease or cancer or schizophrenia or alcoholism or parkinson's or lupus; if your research is conducted in an academic bubble of theories and sociological studies and think-tank jargon, you might as well be designing policy for fish. However much an affluent, out-of-touch politician might think a theory is the answer to all their prayers, you simply cannot make an unsound theory fit reality without cheating. An alpha-male, who has sailed through life without physical trauma, poverty or disadvantage, will simply be totally unable to empathise with the nuances of suffering. They can no more design a welfare system that works than I could design a new offside rule.

Until sick and disabled people start to put forward their own suggestions, their own answers, we will remain in the hands of ignorance and arrogance. Until we are at the heart of policy making, we will suffer policies that may as well have been designed by aliens. The time has come where it is no longer enough to oppose, we must educate and inform. We must save ourselves, because my endless nights spent poring over welfare papers has convinced me that we have no alternative. Privileged academics and politicians have proven themselves horrifically incapable of even beginning to understand our lives and if we are to get a welfare system that actually works for us, we need to start making suggestions. We have the experience, the knowledge and the understanding and they never will.

So today, please use the comment thread below to explain what would help you. Contribute your ideas and suggestions no matter how silly or unformed you think they are. Share your stories of trying to work and how the system has failed or supported you. Make them essays or make them just a few words. I don't care how long or short they are. Tell me what work you could do and what support you would need to do it. Does the state itself trap you? What could business do to enable you? Is there a working model that could suit you? What type of work would you like? Why is it unavailable? Do you want to work? Would it make you better or worse? Would it increase your affluence or plunge you further into poverty? In an ideal world, what would governments be doing to support you?

Remember, this is a brainstorm. Write anything. It can't possibly be more banal, mis-guided or unworkable than the suggestions of successive politicians.

Please help. Join in, engage, show politicians our endless strength, our great value and our hopes and dreams. Help me and I'll do my very, very best to help you.

As I started this article by explaining, I have been given a voice. I have the privilege of a platform. It's your platform too and I need you to share it. Otherwise, I might just end up as another mis-guided fool who thinks she knows it all. I can speak for myself, but I can't speak for you."

The consultation was my most successful to date with over 400 responses. Some brilliant ideas came out of it, a real picture of how work fails us.

Since 2011 I've been working to try and put shape to your experiences and put together a report that looks at work and long term illness or disability from the perspective of those who really know. You. It will offer real solutions, not just empty criticisms. It's nearly finished and will be submitted to the Labour Policy review, the taskforce on disability and poverty and Liam Byrne's office.

This will be my focus for the next few weeks. I will be publishing a survey for you to fill in and asking you to feed into the report as much as possible. It's clear that increasingly, society must find a solution to this problem - and left unguided, the evidence shows that those solutions will be punitive, ignorant and damaging. We have a chance to be heard, to re-frame the debate. As I write, many similarly misguided politicians and academics are trying to solve problems they can never comprehend.

In the comments beneath this article, please leave your stories - did you work? How long for? What work did you/do you do? Did it become impossible? What support did you get when your illness or disability limited your ability to work? Did it help? What do you feel able to do now? Could you work at all? What kind of work could you manage? What is the ideal solution that would enable you to do some work however little? What stops you from doing any work at all?

Every story you share brings us closer to solutions. Every one of you who takes part will know that we did everything we could to change a system that is hurting us, degrading us, abandoning us.

Please help me to get this right. Because you can be very sure others will not ask you. Yet again, they will design systems based on air, policies based on ideology.


  1. Hi Sue I'm self employed having run my own company for 13 years it provides a flexibility that being employed cannot hope to do, however as my illness has progressed, I have MS, my income is a fifth of what it was due to fatigue and other symptoms, I cannot work the hours I used to or travel the distance without serious risk to my remaining health. However without DLA I couldn't even do what I do now. Not everyone can do what I do as it is reliant on 30 plus years of contacts and experience in a very specialist field.

  2. I wrote a comment on the last entry - I didn't have a car then, or a license, my son wasn't even in school full time due to fighting to get him a residential placement, and my business was still in fledgling stages. Son is now in school, I have a license, and I managed to get a Motability vehicle with adaptations for my use - however with the mobility changes of PIP who knows how long I'll still have it? To run a self-employed business transport is absolutely VITAL. People seem to think everything can be run from home and you never need to venture out but it's not true. I have to get shipments of goods to the post office. I have to get out and network to get more business to my site - contrary to popular belief no one just puts something online and then suddenly has a massive flock of people wanting their stuff. Transport still a big deal right now.

    Childcare is still a problem - my son is in a special residential school but there are still half terms, Christmas breaks, summer holidays and the odd outbreak of stomach flu which shuts down the school or flooding which means the kids have to come home. As a parent and carer I have to stop working during those times - even if there's seminars or fairs or other business opportunities running during those times. This is when tax-credits saves my skin - and the changes coming to tax credits terrifies me as I will never make even minimum wage with my work. I've been investigated by the Tax Office more and more often as the government seems to think anyone making under 10,000 a year must be a scam artist; for some reason they don't seem to be putting economy slow-down, people using foodbanks are probably not keen on buying art, art promotions and IP protections slashed, and devaluation of craft as being "original work" into the equation.

    My main beef and problem with the whole system is no matter how much a disabled person can do - no matter how much they are able to contribute, it is NEVER seen as enough by the government. No matter what, we're always on the back foot, always being asked to "contribute more". The fact I'm able to work and create at all is seen as totally pointless. The idea of a living wage is considered "something for nothing culture" and laughable, but if a political party would just grow a spine and back the idea, it would solve so many problems.

    I am doing the best I can with what I have - and I used to enjoy my work. But over the past year, I find myself constantly pushing myself past my healthy points to try and make more money, all because I feel like the Government is breathing down my neck. I shouldn't feel like I have to prove my worth every waking moment, but that's exactly where I am right now. It's appalling anyone should feel that way - and I have to say Labour hasn't exactly helped settle anyone's fears in that regard, nor do I expect them to.

    It would be impressive if they could prove me wrong.

    1. Hope you'll be watching the welfare debate on he Monday afternoon of conference Oya's daughter, you might be pleasantly surprised.

      Great to get an update to your earlier post - I just copied some of it through to use as a case study in the report xxx

    2. What is said at a conference debate and what is actually DONE is two different things. The day after you said "Oh, Liam is doing good things, just wait and see!" Labour abstained from voting on workfare - which came as a kick in the guts. Soundbytes at a conference does nothing if they're not willing to back up the talk with some actual walk.

    3. I know. It's a long non-linear process. Spect they'll still screw up along the way. But I still think you'll be impressed ;)

    4. I'm in a similar boat. With DLA I wouldn't be able to be self-employed nor would I be able to be flexible within my working hours so as to act as primary carer for my partner or look to my own medical needs. Like many, the Tax Credit system helped enormously but I fear that under Universal Credit I will not be able to remain self-employed, fit in my work with my own medical needs and look to my partner. I wrote about this some time ago

      My greatest fear is not what will happen to me but my partner - as some of you will know, she has already made a serious attempt upon her own life, spending best part of a week in ITU, in large part out of fear of this damn coalition's 'reforms'

    5. Ugh, man, I feel for you. I know Tax Credits tends to mean employers don't have to pay their staff a living wage but in situations like ours it's a lifeline. I can't imagine how cutting all the stuff they're cutting is going to help

  3. I worked for a year and a half in my dream job for a magazine. Then, among other things, the lift broke down and the owner of the building refused to fix it. We were on the top floor and it became physically impossible for me to climb that many stairs that often.

    So now I work from home, writing a little blog of my own. If any employer is willing to give me a job that allows me to use my brain while meeting my needs, I'll work with great pleasure.

    Growing up, we CP children had a problem- there were no lifts in mainstream schools. After years of battles to build lifts in mainstream schools, we found that there are now no lifts in mainstream offices.

    But lifts give wheelchair users priceless gifts- education, independence, employment. So please, install lifts EVERYWHERE and keep them working ALWAYS. Then we can work too.

  4. I think doing everything in-house would help. There are too many private companies making a profit from other people's suffering. There are too many incentives to cut corners for a profit and it means that the buck doesn't actually stop anywhere. The likes of atos, a4e, sirco et al have their own independent complaints procedures that buffer their paymasters from the consequences of their failed policies.

  5. There are ways other than paid work of contributing to socieity. For example grandparents being allowed to look after their own grandkids rather than forcing families to hand over their toddlers to be 'trained' in yet more state institutions. Until recently, charity shops used to be staffed by sixty-something retirees, happy to be giving something back. These are now being replaced by forced unpaid labour - in many cases sick and vulnerable individuals whose own doctors had advised them that they should not be attempting to work.

    No civillised society should abandon the principle of early retirement on grounds of ill-health - nor age-related retirement while people are still young enough to enjoy a few quality years. Today's generation will be released from their chains only at the point of terminal decline. Sixty eight (70 now) is far too late for most.

    The #ukpensionsnatch is a *massive* ticking time-bomb that could prove even worse than the bedroom tax - already there are sick and disabled 60-year-olds being thrown to the Atos and workfare wolves, who a few years ago would have been allowed to lead their lives in dignity and at their own pace. According to AgeUK 1 in 6 people at this age will have a progressive condition - rising to 3 out of 5 by 65. It's likely that this group who are at higher risk of heart-attack, stroke, etc., will lead to a steep rise in the Atos death-toll.

    Lord Bichard has already demanded that ALL state pensioners should be forced into workfare, no matter how old, and the Tories are doing their level best to spin state retirement pensions as "just another form of unemployment benefit". For all our sakes retirement must be reinstated as a right available to anyone who needs it.

    Work is NOT medicine. Not all work is good. Nor should work be required or expected of everyone regardless of health and circumstances.

  6. Also less frequent testing for people with mental health conditions as the strain of them causes any snail's pace progress toward better health to regress rapidly.

    Some acknowledged that many illnesses are a 'dial' rather than an "on/off switch"

    1. Agreed.

      Atos gets paid a substantial cash bonus whenever they drag someone in for a face-to-face, and they seem to deliberately target the most vulnerable (as do most benefits-related contractors). They should have to justify their reasons and obtain express permission from the DWP, *every time* they want to call in a person diagnosed with a MH condition (which surely can't be 'rediagnosed' by a medical subaltern in a brief interview).

      Likewise for all claims regarding permanent/progressive conditions. In fact, WHY ARE THESE CASES EVER BEING REFERRED FOR 'WORK CAPABILITY ASSESSMENT' BY THE DWP, WHEN RECOVERY IS CLEARLY NOT POSSIBLE?

      There is NO justification for such assessments and it simply amounts to harrassment when the DWP condones them.

      Every one of these bogus WCA interviews is a fraud perpetrated against the taxpayer.

  7. I have been ill since the age of 17 with an autoimmune illness which has progressively attacked multiple systems causing a raft of problems. I also have a deteriorating disabling muscle condition.

    I was still able to go to university, do a PhD and work as a researcher for 5 years after that. I now cannot work at all and am in the support group of ESA.

    I am lucky. I received good support and that was what allowed me to do this despite bad health and disability.

    What was good:
    I received care from social services early on, which enabled me to leave home and go to university.

    I received DLA. This paid for my care and extra costs. The most important thing was when I realised that I was going to need an electric wheelchair and the NHS was not going to provide one (I could still walk indoors). I started saving up in 2002. In 2004 my university agreed to fund half my electric wheelchair and I paid the other half. Without this I would not have been able to continue my PhD.

    It is sheer fluke I got help from the university. Access to Work or similar should fund wheelchairs for people in higher education.

    During my university and PhD years I got help from DSA (Disability Student Allowance). In particular this included an assessment which showed me new technology I was completely unaware of. It then funded said technology and enabled me to complete my studies.

    During my research years I got help from Access to Work. They funded lots of equipment I wouldn't have been able to do my job without.

    During my PhD and research years work was totally flexible. I could work from home almost as much as I wanted and often only went into the office in the mornings. Some days I didn't work at all. Sometimes I worked at weekends. As long as the work got done, that was fine.

    During my PhD and research years deadlines were long term. I had to achieve things on a yearly rather than weekly or daily basis. As long as at the end of the year I had done what I needed, that was what mattered. So if I was very ill one month and did hardly anything, it wasn't a problem as long as I caught up the following month.

    During my research years I went 75% part time to account for my deteriorating health. Even with the long deadlines I could no longer manage. This meant I didn't need to go into the office as much. Some weeks/months I didn't go in at all.

    Although my own salary was too high to do so, I noted that I could have claimed disability tax credits to help me if it had been much lower and this would have been a great help in a lower paid job. This would also have been an option if I had wanted to go 50% part time.

    When I finally did become too ill to work I got into the support group of ESA and am being financially supported.

    What was bad:
    The NHS does not provide me with an electric wheelchair even though I cannot leave the house without one.

    There have been numerous bureaucratic errors with ESA, one of which left me without income for 3 months.

    I have been retested for ESA 4 times since 2008 despite the fact that I have been progressively getting worse since the age 1996 and have an indefinite DLA award. This is extremely stressful and tiring.

    So. I think my job was one in a million. Its flexibility allowed me to cater for all my time off and hospital visits etc and continue working way past the time any other job would have. ESA does support me financially but the continuous reassessments are a waste of time.

  8. I would like to see the Open University cease to discriminate against graduates in its financial assistance scheme.

    If I could only physically attend my local FE college, I would be able to take retraining, including at graduate and post-graduate level with the fees waived - as they do for all students on means-tested benefits.

    I am housebound but would love to take a course in IT skills that would allow me to set up my own business from home. The OU is the only institution accessible to me, but because I went to university over 30 years ago (for a B.Ed which is well past expiry date, and which I will never again be physically able to use) the OU finance rules say that I do not deserve a second chance.

    How about the DWP stumping up with course fees for disabled but 'B.Edbound' would-be students such as myself, rather than planning to round us up into workhouses for segregated 'training'?

  9. I think the law needs to be much clearer around what should be considered reasonable adaptations to enable people to work. At the moment it is far too easy for employers to refuse basic adaptations such as changing in working hours, allowing people to work from home and so on. Also, many people don't have a clear idea of what they can ask for.

    Employers should have the legal duty to automatically make certain categories of changes on request, to enable ill and disabled people to work. These should include ramps, maintaining existing lifts, allowing home-working for a minimum proportion of the work week, allowing employees to travel outside of peak times so they can get seats on transport, allowing different patterns of working hours and breaks. Most of these adaptations have little or no impact on office-type roles. Only if an employer can show that an adaptation would fundamentally damage the business (such as a waiter not being able to turn up during restaurant hours) should they be able to refuse requested adaptations. Employers should have to pay substantial compensation for refusing adaptations which fit within a set of predetermined 'reasonable' categories.

    Jobsharing should also be a right for everyone in businesses over a certain size. This would enable people who can't work a full week to stay in work.

    Oh and the terrible shoddy practice around occupational health assessments to determine levels of workplace adaptation should be tackled. A letter from somebody's doctor should be considered enough evidence to justify workplace adaptations, without the employer being able to fob employees off with OH 'assessments' which are a total waste of money and time, and are often used as justification to make no changes or to sack people because what they need is 'too much'.

  10. I also don't see why people with a certain level of long term illness or disability couldn't have access to a 'rest and recovery leave' fund provided by government, similar to maternity pay. If people needed a certain amount of extra time off over a one or two year period, some statutory funding should be provided so that the employer wouldn't have to cover it and the person would have some funding before returning to work. If I'd known that I could take three or four weeks off without losing my job or being unable to pay for basic living costs, the stress and fear I felt would have massively reduced. The salary the employer would otherwise have been paying could be used for temp cover.

    1. Great suggestion, I agree entirely. Something I already have a proposal for, so I'll almost certainly use your comment, thanks

  11. Unfortunately, we face barriers in all parts of society, nhs and care, government and work. I wish it were different.

    Firstly on the WCA, I would like to see the mental health descriptors completely revamped and also some added for visual impairment (these do not exist anymore). Just because you use a white stick or have a guide dog does not mean you do not face barriers to work and in society.

    Not to bang on, but I worked full time for 20 years in an office. Since the introduction or american style targets into workplaces, I found I just could not keep up with my fully sighted colleagues. I fell behind in my last job and was subjected to discrimination and bullying from my employer and my direct line manager. I stuck this for 18 months, and ended up with anxiety and depression, and had to leave due to this.

    When employers take disabled people on, they must do so for the valuable contribution they can make, and not so they can compare them against the able bodied. Until this happens, we will never be able to really succeed in work. Given that a recent survey of companies found that 91% would not employ someone with visual impairment, we are a long way away from this!

    Before my condition worsened in the last year, I was trying to organise some voluntary work in the office of a local community centre. I would need enlargement software to help me do this, but guess what? There is no help with provision of equipment for voluntary work, not through Access to Work or anywhere else. I even approached Action for Blind People who said they could help, then advised me the voluntary organisation would have to buy the software. Sure, after all the local cuts they are really going to be able to do that! When disabled people try to help themselves back to work, there is no assistance available, so how can we?

    I saw a job advertised for part time work and thought it would be ideal for me if I were able to go back to work at this time. However, when I looked at the pay and then realised my husband would lose some or all of his benefit if I did, I didn't bother to apply. It would just be a waste of time as we would be worse off financially. Where is the sense in that?

  12. DWP Reveals The Real Agenda Behind Universal Credit And Welfare ReformFor over two years now Iain Duncan Smith has been pretending that his brutal and bodged welfare reforms have been about encouraging people back to work and making that work pay.

    Throughout this period it has often been suggested that a more brutal social security system is really intended to increase competition for jobs and allow employers to force down wages and working conditions for everyone. Vastly increased benefit conditionality has led to hundreds of thousands of benefit claims being stopped or sanctioned. With workfare or destitution the only option left for those unable to find a job, exploitative employers have free reign to treat workers like shit, knowing full well if they leave, or are sacked, they will face increasingly desperate poverty.

    Few have been cynical enough to suggest that Universal Credit will also make it easier for employers to casualise their existing workforce and make it easier to cut worker’s hours in times of ‘business troughs’. Yet just released DWP guidance for employers explaining Universal Credit suggests that this – along with increasing competition for jobs – is the real thinking behind the new benefit regime.

    From the DWP’s own website (PDF):

  13. the government's agenda was always about slavery getting jobs filled with businesses paying as least as possible
    this is conservative DNA and always has been be it here in the uk India or Pakistan Sudan i could go on but I'm sure you get my drift

  14. As a Crohn's sufferer, I used to have to take daily overdoses of opiate painkillers to keep the symptoms at bay so I could go to work. By the time I managed to get Incapacity Benefit I had a serious addiction which I have been battling ever since and have very nearly beaten. Now Atos are reviewing my entitlement to benefit and I am afraid of ending up in the same situation I was in before.
    Why doesn't the Government focus on creating employment for young people who are desperate for work, instead of pushing the sick and disabled into an already overcrowded job market?

  15. HI Sue

    I worked for 8 years as a research fellow if various Physics/Engineering universities around the UK. Then I had fairly mild ME and was able to work about 30 hours per week so long as I could organise my own day - a combination of reading/writing, practical work in the lab/clean room and a little teaching. Five years ago my health suddenly deteriorated leaving me house-bound. For a long time, just doing normal caring things- getting dressed, eating etc was all I could manage. Then I improved a little - and was able to study part-time. I've just completed an MSc in E-learning - all done by distance learning. I'm still pretty much house bound, but studying has shown me what I can do and also what my limits are.
    In a good week I can do maybe 10 hours concentrating at a computer. That means half and hour four times a day with rests in between. I've had pretty good results (sometimes 80%+), so I think that this type of activity benefits from taking regular breaks! The trouble is on bad weeks I can do no useful computer work at all.
    I would love to be able to work a few hours here and there without fear of being re-assessed, or loosing my benefits. the system doesn't really seem to support this. I doubt there are many jobs that require ad-hoc short term research projects, or the type I am able to do though. And most of the time I am just too unwell to consider work at all.
    So the barrier for me is partly illness and partly the system making it too scary a prospect. I was so ill when I first applied for ESA - and was ofcourse told I was fit for work.(I'm now in the support group). I dread to think what would happen if I told them I was doing 4 or 5 hours per week, on and off.

  16. At the moment I'm not fit enough to work. If I were suddenly fit enough to work I would have no guarantee that I would remain so. I have no references more current than 2001, no provable qualifications for any employment. Even if fit, at 43 years old I am unemployable.

  17. A minimal/ yet not poverty stricken in this 1 st world country amount to live on for every individual then on top of that a % of tax relating to earnings.
    If people think this allowance is too much cos there super dooper at budgeting and very able award what is fit for you to others in need.

  18. Put us back in government in 2015, Nick Clegg says why?
    he hasn't stopped the bedroom tax ? He has not prevented the many deaths of those going through the welfare reform he has not even mentioned the deaths it has if they never happened

    How could you vote for someone like this who is without any morels?

    Wiping out up two million people's views counts for nothing is disgraceful

    True the situation would be far worse without the liberals but by how much?

    Over the coming weeks we will hear many great things said in the conferences it will be like i am saying them

    The only trouble is thou whereas i would be implementing them the main 3 parties will never implement them

    most comfortably off people won’t even care what is said as they've heard it all before all a lot of old bull and a complete non-event happens every year the same old message going nowhere
    If we stay where were we are with the coalition many more deaths and hardship will occur on a scale never seen before in the UK despite Sue’s best efforts to slow them down

    My conference motion
    The complete rewrite of the welfare reform bill that is fair and effective and prevents death by negligence

    Much more needs to be done in stopping the sick and disabled from dying from negligent/wilful welfare reform

    All sick and disabled people should have their assessments done in the comfort of their home in which their spouse/partner/carer can be present and that a senior GMC doctor be present to conduct the assessment. Also present should be a DWP assessor to make sure that the level of any benefits to be paid are correct and that any security checks that need to take place can.

    This approach of mine would be welcomed across the country and i recommend this motion of mine to this house

    everyone in favour say "Aye"

    on the contrary Those who disagree with the motion say "Noe"

    1. nice one clegg need i say more ?

    2. Hmmm... Not sure I'd want *any* of that bunch coming into my home - especially not some scumbag jumped-up filing clerk with a couple of lousy GCSEs from the DWP.

      Whatever happened to privacy?

      If the asessment is for ESA, all any of them need to know to make a decision is my diagnosis and prognosis - which a basic sicknote from my GP would be able to tell them on a single A5 sheet of paper.

      As for DLA - why can't I just fill out a form indicating my needs and get my GP or physio to countersign it to prevent risk of 'exaggeration'?

  19. First and foremost people need to realise that people with long term illnesses don't all want to carry on working, government should support the choice of the individual concerned, not decide for them. It's not the job of any government to discipline people into doing things they don't feel is in their best interests, it's not the job of any government to demand anything from a law abiding citizen, it's not the job of any government to conscript people against their will for any service. I don't understand why this issue is made so complicated, and the only people who continue to benefit from this are the private companies who are making money hand over fist for services that don't need doing.

    You're wasting your time trying to get through to people by using emotion, the majority just don't care, no amount of evidence will convince the true believers who are getting their news from the mainstream media, being drip fed lies and distortions everyday for decades tends to give people a false view of the subjects at hand.

    What needs focusing on is the cost issue of the system. Someone needs to find out exactly how much it costs to have these private companies involved in the process, from start to finish and down to the last penny, and then you need to show people how much cheaper and efficient it would be to simply have the patients Dr and specialist give their opinion, backed up by medical evidence, any sane pragmatic person would say that's the fairest way to do it(you know how they like to see themselves as efficient, pragmatic and fair), Now I don't believe for one minute that it wouldn't be massively less expensive to have that simple system of NHS medical professionals giving the medical evidence to back up someone's claim, if it isn't sufficient then the claim wouldn't go through. Simple, no private companies needed, and you frame it to the public as medical evidence can't lie or cheat the system. Also take into account the money wasted on each individual by being called back in for further testing even though the condition they have is a progressive one with no hope of getting better, that's just more corporate welfare doing a job that doesn't need doing, a simple letter asking if there had been any changes in your condition would suffice and cut costs even more.

    We all know the current system isn't designed to be cost effective or fair, but those are the words politicians will continue to use while they're not being challenged about it. You need to use their own language against them, you say, look, this system will cut costs dramatically, saving the taxpayer a considerable amount of money, cutting bureaucracy(that's what atos and the other cronies are after all, private bureaucracies) and will make sure that a claim will only be awarded to those with the appropriate medical evidence to back them up, and that alone will deter the fakers.

    It all goes back to corporate welfare, that's the only reason we have the nonsense we have now, it needs tackling and removing.

    One more thing, by constantly asking people what help they would need to work is a problem in itself. Whether someone wants to work is the only question that needs asking of people with chronic, long term illnesses, it should be their choice, not that of the government or private profiteers scamming the public.

    1. Absolutely brilliant comment James. I couldn't agree more. In my physical condition I simply do not want to work, and even the thought of forced servitude is nightmarish. This has to be a very normal thought process for very ill people, unless they are fantasising about a life they just cannot have.

      But these type of comments might bring uneasiness to people, because they can be easily manipulated into the shirker category.

      In my opinion your comment is fact based, and does not deal in the what -ifs or unobtainable hypotheticals. It cuts out the unnecessary complexities of this ongoing and very exhausting debate, battle, and war being fought over the sick and disabled. A war fought on a sordid battlefield of political popularity paid for in a human cost that may never be countable or/and hold those responsible to be accountable.

      We need more people who can speak without ambiguity, and deal only with truths, or we will remain in ever decreasing circles.

  20. My most recent job was as a copywriter, full-time. And even though it was office based, and at times I could and did work from home, my seizure frequency shot up so that I was having them every day, in the office, and frequently getting carted off to A&E in an ambulance. When my GP told me that it would probably be best if I never worked full-time again, I was let go.

    Now I face the dilemma that I could *probably* work part time, but whatever job I have, I know I will have seizures in the workplace. I am, to all intents and purposes, unemployable.

    However, while not having a seizure, I am a normal, mostly able-bodied person. I "could" work, and I have indeed been put in the WRAG for ESA. I can try to volunteer to fill that criteria, but at the moment I make ends meet as a single parents with two children by qualifying for DLA as well. And we all know how much security there is down that path...

    I want to work. I "can" work. My problem is that however willing I am, I am not willing to jeopardise my health to the point where it compromises my ability to look after my children. So I need a low hour, or very flexible job, preferably one I could do at home should I be unable to get to a workplace. Sometimes I have whole days where I struggle to walk and order my thoughts properly.

    The whole system in general is very unhelpful to people such as myself who have fluctuating health conditions. People want to know "how often" I have seizures. I don't know! I can go a week with nothing, and then have one every day for a fortnight. They can last two minutes and then I can get up, or I can be affected for hours.

    A tick sheet can't account for that, in the same way most employers don't want to handle it.

    The WCA should place a more heavy emphasis on what is *realistically* needed to be employable, and take into account what that actually means. Can you sit at a desk for eight hours and *focus* that whole time? Can you manage to do that five days a week, every week, without your health worsening? And not just for office work - apply that to other work situation: retail,driving jobs, factory work, actual, REAL jobs, and whether you can do them.

    No assessment can really decide that alone; more needs to be made of medical history. Each of us with a long-term health condition or disability has an extensive one, with notes, test results, and a pattern of symptoms which often stretches back years. If your GP is able to sign you off for the first few weeks of ESA while they assess you, if the GP is capable of deciding that yes, you are unfit for work, why can't that statement hold greater weight? Why are we filling out tickboxes when the NHS exists, and we all have a mile-long paper trail? Surely, the WCA could shadow the NHS, and be set up to communicate and share that information? Then you would only need to call people in for an assessment where no such paper trail existed. If they had not sought NHS help, say, or if they had moved and their medical history was in another region.

    I am told that many of my scans are outdated. Well, that's ridiculous. Many conditions don't go away after six months. The difference between an X-ray showing a broken leg and a brain scan showing epilepsy, say, should be apparent. Health information doesn't suddenly become invalidated due to the passing of time.

    We need a system that looks to the information which already exists, instead of one which tries to create more. This would also help those patients with MH issues - a track record of their prescribed medications alone should prove testament to the fact that, yes, they are ill, and would hopefully reduce the stress of trying to justify it.

  21. I have long-term ME. Between 2004-7, I worked part-time as a researcher and administrator at a university. I used to do most of my serious work at home, very early in the morning (it is the only time my brain works at all), and travel into the university for e.g. meetings once or twice a week (unless I was very ill). It was mostly project-based work with long deadlines, giving me a high degree of flexibility in terms of where, when and how I worked. I was exhausted, but somehow managed, though struggled badly if I was required to do anything quickly.

    When my contract ran out, I couldn’t find another job or even freelance work offering me the kind of flexibility I needed. In my experience, employers are incredibly fussy, suspicious of anyone with health problems and a gap in their CV, and reluctant to make any adjustments. Politicians don’t seem to understand that no amount of tailored support is going to get sick and disabled people into work if there are no jobs tailored to their needs.

    A DEA at my local job centre once told me that no employer would be able to hire me since I can’t work regular hours at the kind of pace required in the modern workplace. Last year I had to attend an Atos assessment and was found FFW because I possess such abilities as getting out of bed unaided, carrying a shoulder bag and using a mobile phone. This clearly illustrates the huge gap between DWP’s rhetoric (‘the WCA focuses on what you CAN do’) and the reality for sick and disabled claimants.

    I appealed and on reconsideration was put in the Support Group. However, I’m dreading my next reassessment and feeling utterly demoralised. Although I am worse now than 5 years ago, I might still be able to do a small amount of project- and home-based work. In the past I have participated in back-to-work programmes on a voluntary basis; now I am afraid of doing anything at all, because the tiniest bit of activity is likely to be interpreted as full fitness for work.

  22. I trained as a teacher and first worked full time and as time went on and after having a family I went part time, however because of my illness fibromyalgia, prolapsed discs, osteoarthritus in knees eventually meant that I was unable to continue. I retired due to ill health from teaching as no other viable option was out there for me. I was initially assesses as able to do some work and my benefits were stopped after the 1 year. Forcing my family to struggle and cope on one wage, despite paying into the system for years. I appealed and was placed in the support group and now dread having to go through this process again in the near future. I am not fit to work regularly as one day can be good and the next I can hardly move with pain and discomfort.
    The system does not take into account our doctors evidence. Why must we go through this inhumane system which just makes my condition worse. I would work if I could i trained long and hard to become a teacher do they think I want to be like this. Illness is not a life choice I did not want this and this system is cruel.

  23. I worked for the police, had an injury at work, which unleashed the little understood illness fibromyalgia. Still 15yrs on medical profession, nurses, relatives, friends and most of the population, have no idea what the illness is all about. I lost my job, no compo, 38yr marriage collapsed, surviving on just incapacity benefit until I went thru a divorce and now live alone. I've suffered years of bullying by those who don't believe I have an illness, as it doesn't reflect in my appearance. I wear make up when I feel able as I don't like looking ill, feel ashamed I'm now an invalid, am constantly being assessed by medical professionals. Now I'm worse and have carers, unable to leave the house alone. With the media proclaiming all invalids are scroungers, I feel that unless I am in paid work I have committed a crime worse than murder. MAKE IT STOP! There is no work I can think of that I could do, I'm 60, have to wait 2 yrs more for my pension. Now I'm constantly worried about benefits being taken away, despite weeping down the phone to the doctor telling him how worried I was as I received an ESA50 form, he refused to support me. Now I feel utterly vulnerable without any support; will become homeless when benefits are taken away. The very people u think are in positions of healthcare and social carer, have turned their backs on us. It is a lonely, frightening, frustrating and lonely life. How did this country become so cold, cruel and heartless. I would love to return to the daily life I had and join society again but society doesn't want me or my kind. If there was any type of work I could do, I know I would face rebellious colleagues and frustrated bosses. How could this type of environment ever support us?

  24. First, they need to stop sending out 20 page forms full of open questions, and even the "closed" ones are so vague it's difficult to work out how to answer them.

    Then they need to throw out ATOS and try and find some intelligent human beings to work for them, and then NOT require them to adhere rigidly to a script, but empower them to actively investigate the ins and outs of a claimant's disabilities without pre-formed opinions. Sure a script is good for starters, but you have to go off the script to deal with many claimants properly.
    Thirdly, strive to get a reputation for getting it right. "Good enough" is not good enough.

  25. I am certain that I could work from home for a few hours every other day (for example), using my laptop. But I have no idea where to find these type of jobs. I also worry that if I start doing that, my benefits will be cut so that I can no longer afford to live the 'stress-free' life I currently have (I know I'm lucky to actually get enough benefits to live off so that I can focus on improving my physical health, but feeling like I am scrounging does nothing for my depression). I also think it would be good if we could have the option of being put in touch with local people in similar situations so that we realise we aren't alone, and would be able to support one another through their worst and best times. While I have found a lot of support online, I have no way of knowing whether I'm the only one in this town with these problems (which I seriously doubt).

  26. I had my almost dream career, and lost it.

    Physically things were getting harder, and after years of yes/no/yes/no my last department announced that we did not have a fire safe lift. The solution? Eventually they built a small office on the ground floor for anyone who admitted they could not evacuate from the higher floors.

    And working from home was effectively stopped because of security concerns. (Reducing my options to pace myself.)

    All the larger meeting rooms on the 16th floor. i could only access the smaller rooms. No money to hire outside rooms any more, so no team meetings for me. I led a team of up to 55 people, but if I couldn't climb down those stairs I'd have to work on my own.

    My manager refused to consider getting me a decent chair after a local H&S assessment, then announced I'd have to have a second assessment to get it - months later still no sign of it.

    Any special requirements seen as me being a nuisance or even me trying to be the 'centre of attention'.

    I was refused 'permission' to attend the local office disability group because someone else who worked for me attended (?). And refused money for professional training, because I needed extra services/money for training.

    Meanwhile, although I was due for a development move, I was refused permission to apply for other posts for over 2.5 years. And, because of recruitment bans, I was trying to cover up to 3 posts - the last 3 years I never had less than 1.75 full-time posts to cover. Yet it became a 'negative behaviour' impacting on annual reviews if we complained or even suggested things wouldn't work or weren't right.
    And then, to reduce the number of employee grievance cases, the new rules also required us to put any complaint via our manager.

    I was finding it increasingly difficult to cope, and even though I could not get DLA I was having to pay for taxis - even for work travel! First class travel was banned, no work travel taxis - if I tried to claim for extra travel expenses my manager would stop me from attending meetings.

    I couldn't get any of it changed, as I'd have to go through my manager to complain about their behaviour.

    This combined with the bullying, isolation and ridiculous pressures led to me leaving with acute stress (later diagnosed as PTSD).

    I asked for a move in order to return to work, it was refused. And I've never worked since.
    I wish I'd felt well enough to cope with a tribunal!

    So between the centrally imposed rules, their determination to cut costs without regards for needs/impacts and the bad local management and bullying culture I lost my career.

    I had given up a lot to be able to hold down a busy full-time job; never enough spoons for much of a private life.

    And, my employers? A large central government department.

    What would I have needed to be able to keep on working? Money for my adaptations (not much),
    a willingness to act,
    a realistic way to get things changed/fixed that would not end with my career suffering,
    a commitment to find a way for me to work one day a week at home (I'd had this in my previous post),
    a government that cared about its employees,
    an occupational health service which isn't focused on treating everyone on sick leave as a liar who needs to be forced back to work,
    a welfare service that doesn't promise anonymity then tells your manager about your appointment,
    a culture which accepted carrots are better than sticks to motivate people,
    respect for and acceptance of my needs even if they didn't understand how my 'hidden' disabilities impacted on my physical strength.

    [Gosh that was a long moan. But I'm still getting treatment for the impact of that job, and so in my case work is no longer better for me than being unemployed.]

    1. I'm really sorry about your experience Tig. You'd think that anyone applying for benefits after leaving a situation like that should get automatic support from DWP to take their employers to tribunal. That would save huge amounts of money in the long run, as employers would get the message they could no longer force people out of work in this way.

  27. I am a carer and fall into that horrible trap were the person I care for does not live with me. They do, however, need to stay with me often when they are in crisis. I have lost my appeal over this `bedroom tax`so need to find a further £80 a month from my already tight budget to remain in my flat. I was told to `stay on the couch` or let the person who is in crisis `stay on the couch`. I was told to move to a one bedroomed flat and do the above, apart from no one bedroom flats being available, it is impractical. My 30 year old son has schizophrenia, apart from the dignity and respect issue, he can often need to be here for two to three weeks. He does not need the added stress of feeling a burden. I will just do without heat and live on the smallest possible amount. I will not add to my sons already horrible illness by making him feel unwanted without a safe refuge of a bedroom to come to.

  28. I have Crohn's and Fibro. I used to be an IT Systems Admin Officer at a large Uni. The job was very stressful, we were always firefighting, hardly ever catching up with essential maintenance. Add to that a one to one and a half hour (each way) commute in packed trains, sometimes no seat until the stop before home, and it was no wonder I couldn't cope when I became ill. We weren't allowed to work from home, the boss thought we would skive. I actually used to love my job, helping youngsters get a good education is very satisfying, but it became impossible. I was signed off by my doctor for over a year and OH said I should be retired due to ill health. The pension authority doctor refused to agree to this, basically stating that a bit of cognitive behaviour therapy and some exercise would cure me ... err, did he not read my doctor's reports? I hung on for another six months and finally got redundancy. I was on ESA in the WRAG until my year was up, and now I get nothing. I could work from home, about three or four hours a day, or two hours if I have to travel (short bus ride only - trains still completely exhaust me) - I can't guarantee every day. If I flare up (a couple of times a year, and more often if I forget to count the spoons) then I'm stuck in bed for days and good for nothing but DVD box sets for weeks afterwards. I'm trying for a bit of pocket money by doing Local History talks, but people don't or can't even find £35 for a 90 min talk from a history graduate, they all want freebies! I've got the dreaded ATOS appointment in a couple of weeks, if I tell them I can get to the Archives once or twice a week (ten mins from home on the bus) and that I want to do a talk once a month I think I'll be FFW toute suite. And I'm not ... not in the full time or even 30hrs sense. Having to ask my husband for every little thing after 30 years of paying my own way is mortifying.

  29. I made a FoI request (see link below)

    I really cannot understand why a GP says you are not fit for work. Following a WCA, Atos/DWP (what an unholy alliance) say that you are.
    Now... doesn't that mean then that ALL those GPs who have said that ALL those people ARE NOT fit for work are incompetent in some way?
    So why haven't DWP done something about that?
    It's because DWP know that the GPs are right (the tribunal appeals bear this out) and they won't take action against the GPs because GPs have the BMA, GMC on their side anyway.
    No what the DWP do in association with their henchman Atos is bully and harass the claimant.

  30. Hi Sue , I've been reading your blog for a while , and have learned so much thank you . I am a carer for my disabled wife , and try and find out as much as I can . With that in mind , all those who regularly read your blog might also want to visit The Void at , . I don't have anything to do with the blog I only read it . Someone might learn something new from it .

    Thank you for my continuing education .

  31. Foucault has pointed out that power is distributed in society as a whole not within the leaders. This means that the present government of the UK is by consent of society. If society as a whole did not consent, then the policies would be unworkable. I am sorry, but the reason all this harmful business is going on, with DWP and Atos and all the rest of them doing Parliament's bidding is because the great British public as a whole want them to do it. Point at your neighbours and friends who vote this nonsense in time after time, in local, national and EU elections. It is they who are responsible for all this suffering.

    1. There may be some 'stand by and not have a revolution' going on, but almost no-one voted in our MP (it's something like 11% of the electorate - low turnout combined with going-to-get-in-regardless)

  32. I totally agree with the points made by James and Amonrosier.
    In my case, I worked when I could but now have several chronic conditions which while not in themselves terminal, well, to be blunt, I am very unlikely to make it to a ripe old age. If I do live to retirement age, I will consider myself fortunate. I would love to work if I had better health, but I don't, so just want to live out my remaining time in peace, without feeling like a drain on the state. Some people are just not well enough to do any kind of work. That must be admitted by the DWP.
    If I had any excess energy I would do some kind of voluntary work, and would want no interference from the DWP or anyone else, nor feel any pressure to justify my own existence.
    One thing I do feel is vitally important though Sue, is that what is happening to sick and disable people now, if it is reversed in the future, must never be allowed to happen again. There MUST be some 'bill of rights' brought in so that in future a law like the Welfare Reform Bill would never be allowed to be passed. For all the children today with chronic illnesses and disabilities, who, unlike we adults, are growing up in a totally negative environment.

  33. I would say that the reason there is so much pressure on the mental health sector, is because the system does not actually allow people to remain well. You grit your teeth, and fight to get stronger, this part often takes years. Then as soon as you are just out of crisis, all help stops. As you are only just finding your feet, when all support - both financial, and psychological - is suddenly whipped away, you inevitably fall from a great height, back to square one. The frustration of knowing that years of painstaking progress has been lost, only compounds your feelings of hopelessness and helplessness. To be found "fit for work" when you have slept less than 10 hours in total in a whole month, spend all day pacing up and down or curled into a ball weeping, and need tranquilizers just to get out of the house, is infuriating, and just plain dishonest. So my message is when Atos find someone fit for work, that means they need at least another year. I personally also found "permitted work" a trap. It should not be allowed, for someone's benefits to be stopped during a permitted work period. The whole point of permitted work, is to see if you can MAINTAIN your health over a long period of time. Calling someone for a WCA six months after they started working 14 hours per week, is just going to get all their benefits stopped automatically - so why would you do that, if the scheme was GENUINELY designed to help people test out their capability, and give them time to adjust and consolidate their progress?
    Finally, please, someone start using your common sense! I was a graduate who could be earning good money, even working part time would make me better off than on sickness benefits. What reason could I possibly have, for falsely claiming I was not fit for work?! It is counter intuitive! Why would someone exist within the abusive, unfair benefit system, a second longer than they had to? If they had any other choice?

  34. Hello, depression - that's just being a bit sad sometimes right? And there can't be two people who suffer from it in the same house, so only one of you is allowed to be a PWD.

    I've solved some of the problem by being self-employed, so on days when getting out of bed takes all my mental effort, I can sort out the brain fight without having the added worry of whether I keep a roof over my head. WTC and HB needed not just for the 'can't work' but for those of us not so bad, who work, just not perfectly.

    Some kind of system that allowed that on a good day, I'll work twice; on a bad day, not so much. Proposals for UC suggest I'll be sanctioned if I get two bad days in a month. This is almost guaranteed eventually.

  35. I am an alpha-ish-male who has sailed through life (almost) without physical trauma, poverty or disadvantage. In particular, I am well qualified to cope with long pernickety forms and with the official mindset---when I have any concentration and ability to stay awake, which hasn't been often since 2006.

    There is a lot wrong even with the path of a claimant through (contribution-based) ESA alone, uncomplicated by the need for other benefits or specialist help. Here are some undigested things that are wrong, and some things that would help:

    (1) A new ESA50 questionnaire with tickyboxes and questions that corresponded to the possible categories for points and for LCWRA descriptors, and with clear signposting to the evidence required, is an absolute necessity.

    (2) The sequence should be:
    (2.1) apply for benefit
    (2.2) initial administrative check for likely eligibility for other benefits / need for emergency hardship funding; issue ESA50. Payment starts.
    (2.3) complete ESA50 and return.
    (2.4) Initial pathway-to-work interview with occupational therapist; barriers to getting well & off benefits identified; if reasonable, employability training starts focussing on lifting those barriers.
    (2.5) OT's report (and employability adviser's reports) also available to WCA assessor.
    (2.6) WCA.

    3. Viewing your illness through the narrow keyholes of WCA points (and the need to think of yourself on the worst day) is bad for your mental health and prospects of recovery. The number of repeat WCAs, and the length of time each repeat takes from ESA50 to interview, should be minimised.

    4. Needing to pass WCA and present medical reports in evidence also damages the claimant's relations with their doctors. Any positive words in a consultant's report can be seized on to minimise the problems. Once a claimant has passed WCA there should be a presumption of continued eligibility as long as treatment continues.

    5. There's nothing in the WCA interview for mental health criteria that can't be completed by the claimant's own doctor, with far greater accuracy, inside the time of a standard GP appointment.

  36. (cont)

    6. The DWP's own assessments on the quality of ATOS's WCA work show that there is no difference in the rate of success on appeal between those receiving a C-grade, unsatisfactory ATOS interview and those getting highly marked interviews. This is strong evidence that the WCA as currently conducted is a pure randomizer and adds nothing to the process. (I have had three interviews, receiving all three possible outcomes: zero points, support group, WRAG; on my appealing the first assessment, the tribunal uprated me to LWCRA.)

    7. The more disastrous it is to fail WCA, the more important it is for genuinely entitled claimants to game the system to avoid any chance of failing. Simple paths between different benefits and a payment system that doesn't leave people without benefit for bureaucratic failures would make the task of the WCA assessor easier.

    8. Similarly, if a jobcentre worker advises a claimant for JSA that they are not fit for work, or employers are giving this advice at interview, there should be a rapid and failsafe path into ESA and occupational therapists' help.

    9. The rules for Permitted Work are overcomplicated and not suitable for the long-term ill wanting to try returning to very small amounts of work---particularly if it is skilled work at a high hourly rate---but unable to risk losing the safety net of benefits. The cutoff requiring claimants to wait 12 months between attempts is absurd.

    10. Time-limiting contributions-based ESA can have perverse outcomes. In my own case I would have been entitled to permanent health insurance, but triggering it would have meant remaining in the workplace, both making myself sicker and harming my employer's business. It was also not predictable, at that time, that my illness would be last for years, so that the permanent insurance would be needed. The safety net of IB/ESA gave me confidence to leave work and focus on treatment. Quite apart from the unfairness in retrospectively limiting my entitlement, requiring employees in future to take out a long-term health insurance, paralleling the expensive ESA system, to receive any income after the time-limiting cannot possibly be efficient.

  37. Been there!!!! Good luck, mama! A Mother's Heart is a wonderful book. Legal and General.

  38. Hey Sue,

    Some excellent points made above and in the comments. It's extraordinary to see the trials people go through daily simply to survive and the lack of help they receive.

    Laura - Hartlepool Solicitors

  39. Thank you for posting such a great article. Keep it up mate.

    jkpaysys gov in salary slip

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