The Hardest Hit Protest, Leeds

Last Saturday thousands of ill and disabled people, their carers and supporters took to the streets in cities across the UK to protest against the cuts that are unfairly targeting them. This unprecedented event was The Hardest Hit October Action.

It takes a lot to make the disabled community take to the streets, mainly because its so difficult for us. If you had eavesdropped my twitter feed last week you would have seen my conversations and musings dominated by The Hardest Hit as we all shared protest survival strategies. We knew there would be a price to pay in our health for attending but as one of my friends put it, "protesting will hurt me but not protesting will hurt me more". 

For every one of us attending an event there were hundreds who were unable to go because they were too ill or disabled, too poor, too busy caring for someone or just couldn't use our inaccessible public transport. They sent messages of support, they were with us in spirit. 

I'm not an activist or a disability campaigner, I'm just an ordinary person struggling with some pretty serious mental health problems. I am, like most other ill and disabled people, one of the hardest hit by the cuts.
I travelled to Leeds to join the Hardest Hit protest because this Government wants to stop my benefits, remove my services, call me a scrounger and force me from my home. For many of us this protest is personal, we're not just fighting for fairness - we're fighting for survival. 

Over two hundred of us gathered in the sun in Leeds. We marched along The Headrow bringing the city centre to a standstill. Shoppers stood and watched as we marched with our wheelchairs, our Assistance Dogs, our mobility scooters, our carers, our children, our friends and our banners. Speeches were made by disability activists, charity sector workers, trade union members, NUS members, a local MP and ordinary people facing huge challenges. The message from all of them and the people listening was clear - these cuts are unfair, we are afraid and we are angry. 

There is a 'perfect storm' facing ill and disabled people. We are already struggling to survive from day to day. Our NHS services are being cut and the voluntary sector agencies who would offer us support are losing their funding. The benefits of those of us who cannot work are being cut or removed and those of us who do work are losing the practical and financial support necessary to make working possible. The additional cuts proposed in the Welfare Reform Bill will leave us and our carers more impoverished, isolated and vulnerable. On top of this, ill and disabled people are being labelled as scroungers and benefit cheats, vilefied by the media and treated with suspicion by the public. Disability hate crime is increasing, people are facing abuse and harassment on a daily basis and many are afraid to leave their homes. 

This Government has promised to support disabled people who are in genuine need - but only if THEY can define 'support', 'disabled', 'genuine' and 'need'. This is a cynical disability denying ploy to remove support from the people who need it. This Government is merely transferring funds from ill and disabled people and carers to private companies making millions from 'welfare reform'. 

One of the most disturbing things is how badly informed most people still are about this. The public still think that disability benefits are a 'lifestyle choice' and believe we are all driving around in BMWs. Sadly many disabled people and their carers are still unaware of quite how badly the cuts will affect them. The media is not listening to the disabled community, some of the Hardest Hit events attracted over a thousand protesters but there was barely any BBC television or radio coverage. The future for society's most vulnerable is bleak. We are 'all in it together' its just that some of us are deeper in it than others. 

Attending the protest left me with mixed feelings. I was proud to stand in solidarity with the hundreds on the streets of Leeds, the thousands in cities across the UK and the tens of thousands who were there in spirit.

But I was also sad and angry that this country should need an event like The Hardest Hit at all.

Guest Post by Vanessa Teal

Hardest Hit protests Today.

Today, up and down the country, sick and disabled people will be taking to the streets to raise awareness of the issues facing them in a series of "Hardest Hit" events.

After the brilliant success of the previous march in May, do please try to get along to your nearest rally. It was the largest protest of sick and disabled people in UK history.

Details of your local protest can be foundhere  http://thehardesthit.wordpress.com/octoberaction/

And if you can't actually attend physically, there are lots of tips and suggestions here  http://thehardesthit.wordpress.com/

Do please try to get along. Whether you are unwell, disabled or simply an able-bodied supporter, horrified by cuts that are leaving people terrified and desperate, please show your support.

For anyone who might be interested, I will be on Radio 5 Live tonight at 11pm discussing the events and the wider issues that make them necessary. It's a call-in show, so if you want to join the debate, I'd love to hear from you.

(Posted by Sue Marsh)

Lord Fraud - A Freud-ian Slip

We hereby give notice that the Lord previously known as "Freud" will henceforth be known as "Fraud"

A million thanks to @DocHackenbush for this awesome image 

Funds Allocated For Time Limiting ESA Before WRB Is Passed

This from the Disability Alliance http://www.disabilityalliance.org/esalimit.htm?utm_source=twitterfeed&utm_medium=twitter shows the utter arrogance of parliament  and our alleged representatives in 2011. Just as NHS reform plans are already going ahead before the vote, so welfare reforms are being pushed through before the democratic process has completed

Welfare Reform Bill (Employment and Support Allowance - Time Limiting - Contingency Fund Advance)

7 September 2011

The Minister of State, Department for Work and Pensions (Chris Grayling): As part of his Spending Review announcement, the Chancellor set out his proposal to introduce a time limit of 1 year for those claiming contributory Employment and Support Allowance who are in the Work Related Activity Group. The change will, subject to the passage of the enabling legislation, apply from April 2012. For those in the Work Related Activity Group who have already received a year or more contributory Employment and Support Allowance as at April 2012, entitlement will cease immediately.

In order to avoid delay in implementing this policy the Department for Work and Pensions has obtained approval for an advance from the Contingencies Fund of £2,705,000 to allow for the development of IT, ensure those potentially impacted by the time limit in April 2012 are notified of the change and to deliver the operational support that will be required before Royal Assent of the enabling legislation.

Parliamentary approval for resources of £2,705,000 for this new service will be sought in a Supplementary Estimate for the Department of Work and Pensions. Pending that approval, urgent expenditure estimated at £2,705,000 will be met by repayable cash advances from the Contingencies Fund. 

 DA says: this decision will end all out of work benefits for over 400,000 disabled people – including people with cancer. The Government is denying the House of Lords a chance to scrutinise and vote on this proposal in the Welfare Reform Bill before prematurely telling disabled people their support could end in six months.

More information

• welfare reform bill summary

BREAKING NEWS! DWP Admits Dodgy Data Use

On the same day the UK Statistics Authority say the DWP must improve the way it presents data on disability benefit claims the DWP is forced to admit that it based sweeping disability reforms affecting hundreds of thousands of sick and disabled people on dodgy data.

Volunteers for ESA documentary required

Anyone remember "Cathy Come Home"? 

Remember how gritty it was, and how it changed public perceptions? 

Now we have a chance to do a day by day, blow by blow account of being 
disabled, on benefits and terrified of the outcome of an upcoming WCA 
or ESA appeal. 

What will it involve? 
Spending time with you and your family (or the people you live with), 
and demonstrating the fears, risks and pitfalls and financial 
implications of the WCA and not getting the ESA. 

We are thinking that we may need 9 or 12 people, not all of which will 
be used, but if we have that many then we can hopefully get a true 
picture. There is no upper limit to volunteers, obviously, but the 
final piece will be editted to have the most powerful impact. 

It doesn't actually matter if your condition is mental health, 
physical health, constant, fluctuating or stable, or any combination 
of conditions. Or if you are a carer. 

Fear of the DWP may stop some people, but for those of us who have put 
our faces out there already, I dont know of one single person who has 
been targetted by the DWP, or any other organisation. 
In fact, having your story out there may actually work as protection. 

You will not be portrayed as fiddling the system if you are found fit 
for work, I suspect quite the opposite will happen and you will be 
shown to have significant problems that prevent you from being as 
employable as others on JSA. 

Its time the tide turned, and the producer is keen to do this. 

If you want more info,  you can email me, and we can chat about it, or 
use this thread. 

Can you also spread the word as much as possible to other sites? 

Ta very much, please feel free to contact us to discuss it if you are 
at all concerned,  or fascinated! 

You can view some of his work here to get a feel of it; 


http://vimeo.com/3863905 

contact me on hossylass@gmail.com

Repeat

 Thanks to Batsgirl for this excellent post, originally published here


I know this is ground we've covered before, but a look at today's front pages makes it necessary to go over it again.

In the UK, we have a welfare system. The disability benefit side of it has been being overhauled for the last few years. Labour started it, the Coalition are continuing it, they're using the same company (Atos) to execute it and the same advisor (Lord Freud) to justify it. This is not a party-political issue - red, blue or yellow, to borrow a phrase, they're all in it together.

In summary:

• If you have a doctor's note stating that you are unable to work because of illness, injury or impairment, you apply for Employment Support Allowance (ESA). For the first 13 weeks of your claim you are paid the "assessment phase" rate of up to £67.50 per week.
• If the assessment classifies you as entirely unable to work, and unlikely to ever be able to work, for instance because you are bedbound and terminally ill with a life expectancy of less than a year, you are granted unconditional ESA at the "support" rate of up to £99.85 per week.
• If the assessment decides that, although your disabilities are substantial, you would be able to do *some* work at *some* point in the future with the right conditions/support/equipment/adjustments, then you are awarded ESA at the "work-related activity" rate of up to £94.25 per week. To continue to receive this you must attend regular work-related activities.
• If the assessment determines that your NHS-diagnosed conditions are not severe enough to substantially impair your ability to work in an office environment, or that you would only require minor adjustments, you are deemed "fit to work". You don't get ESA at all, and are placed on Job Seekers Allowance (JSA) which is a smaller amount of money with much higher conditionality attached. If you are fortunate, there may be a note on your jobseeking file excusing you from mandatory application for specific jobs that would aggravate or be incompatible with your condition (for instance someone with speech and hearing difficulties may be "fit to work" but excused from mandatory application for call-centre jobs).

Leaving aside all the arguments about whether the system is fair, how their fitness-to-work tests relate to what is required to perform a job in the real world, and so on... the Department for Work and Pensions released these statistics yesterday, about ESA applicants over the last two years:

• 7% were incapable of any work (Support group)
• 17% were able to do some sort of work given the correct support (Work-related activity group)
• 39% were deemed to be fit for work and were moved onto jobseeker's allowance
• 36% dropped out of the application process
• 1% of applications were still in progress

Today, the Express have taken these numbers and decided that 1% (still in assessment phase) plus 7% (Support group ESA) plus 17% (WRA group ESA) equals 25% of applicants approved to receive some form of ESA. So far, so true. However, their headline screams that therefore the remaining 75% - those moved onto JSA, and those who drop out of the system entirely - are "faking".

This is simply not true.

The fact that a person has failed to score enough points to get ESA (yes, it really is a points-based computer system) does not mean that they scored no points whatsoever, or even that they're not disabled, just that they're not quite disabled enough to be Officially unfit for work. That's why we have the assessment process! To assess people!

To apply to be assessed is not "faking".

To have a level of impairment that falls just short of the ESA bar is not "faking".

There will also be quite a few applicants who suffered an acute injury or illness (for instance, they were in a car accident) and were advised to apply for ESA as a temporary or worst case scenario - but in the 13-week assessment period, they have recovered well so they have been moved to JSA or have returned to work.

To recover from an illness or injury does not mean that the illness or injury was "faked".

There are also the people who get placed onto Jobseeker's Allowance, and go to appeal, and win. The rate of people winning their appeals is around 40% and this increases to 70% where the appellant has someone to represent them. Regrettably, there are also a number of genuinely disabled people who simply don't have the wherewithal to fight an appeal, and have to attempt to survive without the benefits they need. I myself have been in this situation.

To be too ill to fight is not "faking".

There are people who, during their assessment period, are fortunate to find a suitable job which is prepared to make the necessary adjustments, or who, like myself, have enough personal support around them to enable them to be self-employed.

To return to the taxpaying workforce is not "faking".

A very few people will be fortunate enough to have other resources to fall back on. Perhaps an insurance payout of some kind, or a lottery win, or the sale of assets, will save them from the indignity of having to complete a process that treats them as the worst kind of fraudster from beginning to end.

To have alternative resources is not "faking".

Most significantly, there are those who die before the assessment phase is complete.

To die of a condition is perhaps the strongest possible indicator that the condition was not "faked".


I'd provide more concrete statistics, but we don't have them. Once you leave ESA, you're not monitored. We don't know how many of these people have got jobs, have died, have killed themselves, have left the country... no one cares. The Express just goes ahead and calls them all "fakers".

Government launch new attacks even as select committee condemns propaganda

 Cross posted with thanks to Latent Existence

The headlines today are screaming that a mere 7% of ESA claimants are fit for work. The Daily Mail says that "Benefits Britain marches on: Just one in 14 disability handout applicants are too ill to work" while the BBC claim "Tests claim few benefit claimants unfit to work" These figures are grossly misleading. They actually come from a Department of Work and Pensions press release, 26 July 2011 – Work Programme provides tailored support as latest figures show people are being found fit for work. The news stories haven't actually mislead about the contents of the press release too much, the propaganda comes from the DWP.

Lets start with the figures from the DWP.

For all new ESA claims from 27th October 2008 to 30th November 2010, the result of the initial WCA is as follows

• Support Group – 7%
• Work Related Activity Group – 17%
• Fit for Work – 39%
• Claim closed before assessment complete – 36%
• Assessment still in progress – 1%

These figures are true, but lie by omission. First of all, the figures given are for ALL that start a claim for ESA. As stated, 36% of people that start a claim drop out before they even get to their Work Capability Assessment. Some of these people will drop out because they perhaps shouldn't have applied in the first place. Some might even have been trying it on and then realised that they would be caught. Some recover enough to find work, some find work that fits around their disabilities. Some, however, drop out because they are so ill that they cannot face the application and testing process. We don't know, as no records are kept of reasons for dropping out, but I contend that many more than we know drop out because they are too ill to finish the process. Given that 36% of claimants are not tested, we cannot include them in the 'fit for work' category. That 7% of claimants is actually 11% of claimants who complete the process.

11% is still a very small number. That still casts 89% of claimants as cheats, doesn't it? Well no. No it doesn't. Not unless you are a tabloid writer. You see, 17% of total claimantss - or 26.6% of claimants that finish the process - are put in the Work Related Activity Group. Being put in this group DOES NOT mean that the claimant is fit for work! It means that there may be some job, as yet unknown, that the claimant could possibly manage to do, if they push themselves hard enough,possibly at high cost to their health, IF they receive the right support in terms of information, equipment, services and grants. People in this group must attend six interviews at the Job Centre over the course of a few months to try and determine just what this possible job could be, and the support that would be needed to do it. People in this group STILL RECEIVE ESA.

Adding those two together and leaving out the people that dropped out, that means that 37.5% of people tested were not fit for work. That still leaves 61% that were receiving ESA who were found fit for work. Are they all cheats? No. Here's why.

The Work Capability Assessment takes place at the end of the assessment phase of the claim. That means the test can take place up to 14 weeks after the person started to claim ESA. 14 weeks is a long time, and it should also be noted that people are often sick for a long time before they even apply for ESA, either on Statutory Sick Pay for 28 weeks, or just unaware that they can claim. Those people could easily have been sick for 9 months before being tested. 9 months is long enough for people to recover or start recovering from many health issues, and so these people would have been correctly being given ESA while unable to work. Health issues change, and finding these people fit for work now would be correct, but does not invalidate their claim in the previous months. I think if the WCA correctly finds someone capable of work after many months of illness but heading towards recovery, this is usually a good thing.

Assuming that changes in health conditions account for a chunk of that 61%, let's say a third, that still leaves the rest. Here's the thing. The accuracy of the testing process has been found to be wrong, broken, inadequate, however you want to put it, by MPs, a house of commons select committee, many disability rights charities, and many many individuals and activists.Even a person involved in designing the test has said that it is not fit for purpose.

33% of people found fit for work between October 2008 and August 2009 appealed against that decision. 40% of those overturned that decision and were awarded ESA. That's 27,500 people who were provably found fit for work when they were not. Many more people did not appeal, for many of the same reasons that may have caused people to drop out of the claims process.

Today the Commons Select Committee on the Migration from Incapacity Benefits to Employment Support Allowance released its 6th Report - The Role Of Incapacity Benefit Reassessment In Helping Claimants Into Employment. Among other things, that report criticised media coverage and stated that government had a duty to take more care when engaging with media.

5.  Sections of the media routinely use pejorative language, such as "work-shy" or "scrounger", when referring to incapacity benefit claimants. We strongly deprecate this and believe that it is irresponsible and inaccurate. The duty on the state to provide adequate support through the benefits system for people who are unable to work because of a serious health condition or illness is a fundamental principle of British society. Portraying the reassessment of incapacity benefit claimants as some sort of scheme to "weed out benefit cheats" shows a fundamental misunderstanding of the Government's objectives. (Paragraph 40)

6.  Whilst fully accepting that the Government, and this Committee, have no role in determining the nature and content of media coverage, we believe thatmore care is needed in the way the Government engages with the media and in particular the way in which it releases and provides its commentary on official statistics on the IB reassessment. In the end, the media will choose its own angle, but the Government should take great care with the language it itself uses and take all possible steps to ensure that context is provided when information about IB claimants found fit for work is released, so that unhelpful and inaccurate stories can be shown to have no basis. (Paragraph 41)

I disagree with part of this in that I think that consciously or not, Conservative ministers have an ideological motive to move people off of benefits, portraying them as cheats if necessary, with the help of special advisors. (SPADS.) I believe that ministers and SPADS have been feeding selected information to the press to create a national view that is biased against sick and disabled people that claim benefits, and the press have been only too happy to amplify this.

Related Links

• DWP: 26 July 2011 – Work Programme provides tailored support as latest figures show people are being found fit for work
•  Daily Mail: Benefits Britain marches on: Just one in 14 disability handout applicants are too ill to work
• BBC News: Tests claim few benefit claimants unfit to work
• Commons Select Committee on the Migration from Incapacity Benefits to Employment Support Allowance
• 6th Report - The Role Of Incapacity Benefit Reassessment In Helping Claimants Into Employment

Really? This Passes For Parliamentary Research? By Sue Marsh

Well, well, well, look what I've found!!

After weeks of asking and several Freedom Of Information requests, I've finally unearthed the "assessment" the DWP did into Time Limiting ESA!! Clearly I use the word assessment in much the way ATOS do. In other words, pick a policy and then write some stuff that proves what you want to say. http://www.dwp.gov.uk/docs/esa-time-limit-wr2011-ia.pdf

Just in case, in the very unlikely event that you are not an uber-geek like me and you can't stay awake long enough to plough through 16 pages of fairy stories, here's a quick summary :

-It overwhelmingly affects the poorest most. The % impact falls from the highest in the 1st decile of earnings to the lowest in the 10th.
-It estimates that 60% will simply switch to income based ESA and not be affected. This is absolutely ridiculous, pie-in the sky rubbish. I have absolutely no idea how they can make this claim.
- The report concludes that over the term of the parliament 90% of those placed into the Work Related Activity Group (WRAG) will be affected.
-ALL groups will lose income on average through this measure.
-It is based on an assumption that 50% of claims will be appealed!!! How are they able to go forward with a system this inaccurate?
-The report itself claims that 700,000 will be affected by the Time Limit - a figure previously hotly debated, ranging from 400,000 to 1 million. It is expected to cut benefits for those not fully fit for work by 1.2 billion per year.
- The report acknowledges, just as I've been warning, that this is a disincentive to work and may push couples into divorce or into giving up on work altogether. However, they admit that they have no idea how significant this will be.


Possibly the most astonishing part is the claim that the Social Impacts did not need to be investigated, neither under the categories of Health and Well-being, Human Rights or the Justice System. (It does go on to say that an equalities assessment was carried out, which I will do my best to unearth)

As far as I can tell, the research is deeply flawed, based on inaccurate assumptions, incomplete and surely, illegal. If you discount the assumption that 60% will simply move to income based ESA, which I believe is just not true, it is a damning look into what passes for parliamentary research in our so called democracy.

Last Day For Submissions To ESA Enquiry

Today is the last day for submitting your evidence/experiences to the ESA enquiry.


-If you have experience of an ATOS Work Capability Assessment
-If you are currently on IB but will soon be assessed for ESA
-If you have experience of the Work Capability Group
-If you are concerned about Time Limiting or any other aspect of the changes, then


Please take a few moments to read the issues outlined in the enquiry below and if you feel one or more have affected you, I urge you to write a short statement. It might be a description of how unsuitable your assessment was, your experiences of ATOS, or how time limiting the benefit could affect your partner's ability to keep working. If you have been through the worry and fear of a tribunal, we need to explain how this fails too, or how hard it is to always be fighting.

Obviously, you can respond to all of the points if you feel you have personal experience to share. Contact details for sending in submissions can be found by clicking on "How to submit Written Evidence" at the bottom of the DWP quote.

However, I have set up a new email address, suey2yblog@hotmail.co.uk to enable anyone who wishes to, to write their feelings and thoughts and contributions without having to make their personal details available on my blog. It is vital that each submission is accompanied by a name address and telephone number to ensure that as many submissions can be made as possible.

You don't need to be a writer or a campaigner - far from it. It doesn't matter what you write or how. No submissions will be censored or altered. I will simply collect them together until the submission date. If you've never been actively involved before, I urge you to think about joining in. This is the best chance we, the public, have to be heard and hopefully, to change the most damaging aspects of ESA.

"Employment and Support Allowance (ESA) replaced incapacity benefits for people making new claims from October 2008. To be eligible for ESA, a person must usually undergo a Work Capability Assessment (WCA).

The introduction of ESA in 2008 was initially limited to new claimants. Existing incapacity benefit claimants are now being reassessed under the Work Capability Assessment. The process will last until 2014 with around 1.5 million people being reassessed.

Reassessment commenced on 11 October 2010 with a trial in Aberdeen and Burnley.  At the end of February, Jobcentre Plus began a limited introductory phase, and will move to full national reassessment of incapacity benefit claimants from April 2011.

In particular, the Inquiry will focus on the following issues:

• The Department’s communications to customers going through the assessment and whether the information, guidance and advice provided by the Department and Jobcentre Plus is effective in supporting customers through the process.
• The Work Capability Assessment including: the assessment criteria; the service provided by Atos staff; the suitability of assessment centres; and customers’ overall experience of the process.
• The decision-making process and how it could be improved to ensure that customers are confident that the outcome of their assessment is a fair and transparent reflection of their capacity for work. 
• The appeals process, including the time taken for the appeals process to be completed; and whether customers who decide to appeal the outcome of their assessment have all the necessary guidance, information and advice to support them through the process.
• The outcome of the migration process and the different paths taken by the various client groups: those moved to Jobseeker’s Allowance, including the support provided to find work and theimpact of the labour market on employment prospects; those found fit for work who may be entitled to no further benefits; those placed in the Work Related Activity Group of the ESA, including the likely impact of the Department’s decision to time-limit contribution-based ESA to a year; and those placed in the Support Group.
• The time-scale for the national roll-out for the migration process, including the Department’s capacity to introduce changes identified as necessary in the Aberdeen and Burnley trials.

Short submissions (no more than 3,000 words) are invited from interested organisations and individuals.

The deadline for submissions is 14 April 2011."

How to submit written evidence

That last line is the link that gives details on how the submission should be presented. (just click on it) If you can follow the suggestions, please do, but if they daunt you, don't be put off, just send your story with name, address and telephone number to suey2yblog@hotmail.co.uk and I will attempt to put as many as I can in the format the inquiry requests. (always asking for your approval before submission.)

Most of all though, know that this is great news. It is an enormous achievement that this blog and hundreds of other blogs and campaign groups and charities have highlighted the faults of ESA so effectively that we now have a chance to make our views heard officially.

Please pass this on to anyone you know who might want to participate, and again, share as widely as possible to make sure that as many people are included in this process as possible. 


Once again, the email for submitting via this blog is suey2yblog@hotmail.co.uk

My Working Life - #fitforwork

 Today, The Broken of Britain are asking you to take part in our awareness raising campaign about fitness to work, all details here 

My fellow benefit scrounging diarist Sue Marsh has also written a post about her working life, and if anyone would like to do the same, please let us know and we'll add it to our links list over the w/e. 

 

 Employment History (originally posted here) 

I've applied for a job. Gulp. It's been a long time since I've worked, so long it all feels like a lifetime ago. I was 13 when I got my first job, a sunday morning paper round with a bag of papers so heavy I gave up on the idea of a bike after being picked off the floor by several kind strangers, something I did not then forsee becoming a theme in my life. As soon as I turned 14 I graduated to after school shop work, waitressing, babysitting and later the glamour of washing dishes in a restaurant at the weekends. I worked all the way through school and university - like most students of my age group I had more than one job alongside studying nannying, bar work, shop work, whatever I could get.

My first recognised dislocation happened when I was working as a camp counselor in the USA, a couple of weeks after I finished my finals. It was a serious one, in retrospect it was far more than just the shoulder dislocation I was treated for as it also affected my spine and ribs. Surgery to repair my shoulder came at the end of the summer and I returned to the UK to recover a few days later.

I claimed benefits then, reluctantly so, but knowing that I would be without income for at least a few months it was the only option. It was 1998 so a nice lady from the DSS came out to the house, filled the form in whilst I was there and was able to ascertain that the injuries I had were genuine. Those benefits ran out 3 months later, by which time I'd been told I probably needed further surgery to my shoulder, but not to worry, I was young and so could just treat it as a year out then get on with my career.

I got a job waitressing in a busy restaurant but within the first few weeks it became very obvious that I couldn't even carry a single plate without causing my shoulder to dislocate. I stuck at it, thinking my strength would improve but before long my shoulder was getting worse and I reluctantly gave up the job. Giving up that work meant returning to the jobs I'd had whilst at university. I'd worked as a hostess/cashier in a local restaurant and hadn't wanted to return there as the owner really enjoyed sexually harrassing me, but it was work, it paid relatively well and the chefs would intervene, hide me in the kitchen and make me food until I'd finished crying on the occasions the owner went too far. One of the regular customers managed a local veterinary practice and after witnessing many incidences of the boss's idea of humour told me that I absolutely did not have to put up with such abuse and arranged an interview at the veterinary practice he managed. I got the job as a receptionist and was able to leave the restaurant. I also worked 16 hours a week in a video shop earning just under the limit to pay national insurance, although I did for the first time earn enough to pay national insurance when I was working at the vets. They were jobs I could fit in around physiotherapy and hospital appointments and were far easier on my joints than the physically demanding restaurant jobs had been.

The year out turned into another and I found I was still waiting for surgery.  By the time I reached the top of the waiting list there was far more damage to my shoulder than there had previously been, but for what at the time were inexplicable reasons the surgery didn't work as expected and I found myself able to do far less than I'd been able to do before. I just couldn't manage to keep up both jobs and physiotherapy so eventually, some months later I had to give up the job in the vets. By then it was more than two years since I'd finished university, once again I was on a waitinglist for surgery and really panicking about my future. It was impossible to find full time work that I was able to do physically and that would be possible to fit around the random nature of NHS appointments so I continued working 16 hours a week, not earning enough to pay National Insurance and waiting to 'get better'.

'Getting better' never happened, in fact things just got worse and in addition to the physical difficulties I was experiencing I was starting to have serious psychological issues as those around me went from sceptical glances to outright criticism, fuelled by the doctors treating me, some of whom had no qualms screaming at me in front of a ward full of other patients that I was wasting their time and had nothing wrong with me a psychologist couldn't fix. No-one ever did refer me to that mythical 'able to cure everything psychologist', but many, many insisted they would.

I applied for jobs, lots of jobs, anything and everything but I already had several years of health issues and part time work to explain away. Once employers heard that I was on a waiting list for further corrective surgery they were understandably uninterested. I gave up on any kind of graduate job after going through the interview process for the NHS graduate management scheme. I reached the final interview stages and was told by the Chief Executive who interviewed me that I'd given the most impressive interview she'd seen, after which I had been recommended for a place. However, they regretted to inform me I had not been successful and she could only urge me to reapply when 'my health was more settled' following the next surgery as she could not see any reason I would not be successful. I never did reapply, my confidence had been destroyed by then.

The next surgery eventually came, then the next, and a few more for good measure with a few experiemental procedures along the way and before I knew it I was over 25 with a patchy at best employment record, still living with my parents and too unwell to even manage 16 hours work a week. The benefits system had moved on, slightly stern but kindly ladies no longer came out to fill in the forms and check circumstances were as claimed, you just had to figure it out for yourself and wait months while the details on the form were checked. As I was over 25 I was no longer protected by the 'young person's rule' which exempts younger people who've been in full time education from the need for National Insurance contributions to claim Incapacity Benefit. I was 26 and had been working in part time roles that didn't earn enough to pay National Insurance so I fell through the gaps in the system onto Income Support, a distinction that would later prove vital.

I carried on applying for jobs, although my physical and mental health were very poor. After years of failed surgeries and outright disbelief I reached a point where I had no idea whether I was so mentally unwell that I was doing all this to myself and just didn't know. Diagnosis of Ehlers Danlos Syndrome was still several years in my future and I was desperate and depressed. I was fighting a GP who made his view that I was a lying attention seeker abundantly clear and blocked an initial application for Disability Living Allowance.

Finally after being sent to a psychiatrist and widely regarded as lazy and workshy my shoulder surgeon promised that was it as far as surgical treatment options were concerned and one of my job applications offered me an interview. It was a part time, low waged, administrative role in the NHS but I was overjoyed, seeing it as a stepping stone to a career. I was offered the job after interview and started in the February of 2003. Access to Work, the scheme which provides equipment and support to disabled people in the workplace had a duty to assess people within 6 weeks of their start date. My assessment was 5+ weeks after I started working, which doesn't sound much but by then the damage had been done. I was working in a very isolated part of the hospital, alone in an office which was in a locked corridor. I felt far more lonely than I had done when I was out of work with the added complications of an unsuitable chair and an old folding table doing the job of a desk. It had metal edges and cut into my arms as I tried to sit high enough to reach it.

When Access to Work eventually assessed me they came up with all manner of adjustments to make, but as is so often the case I was shoehorned into them rather than the adjustments being customised to my needs. A phenomenally expensive height adjustable desk and special supportive chair were ordered, but the chair was that bit too big and my feet never reached the floor. Despite the high price tag they didn't make chairs or desks that went small enough and I certainly wasn't confident enough to object. I loved being employed but was struggling physically and emotionally which was compounded after a serious dislocation in the office when I was alone meant I remained on the floor for an unknown length of time before being carried out of the hospital I worked in by paramedics taking me to another hospital. 

I was 'medically suspended' after that until the correct office furniture and equipment arrived which took some months. In fact it took so long for all the equipment recommended by Access to Work to arrive that some of it still had not turned up after I'd become too sick to work and had lost my job by September 2003.

Although I'd had more time off sick than I had worked my employers wanted to keep me as they had no concerns with my work or committment to the job. A 12 month unpaid career break was negotiated so that I could return to work at the same grade although probably not the same role once my health had stabilised.

I was diagnosed with Ehlers Danlos Syndrome in February of 2004 by which time I was desperately unwell, in debt, disabled and on the verge of mental breakdown after so many years of disbelief and accusations of malingering. My award letter informing me I'd been awarded Disability Living Allowance arrived the morning I was to travel to London and be diagnosed, the award dated from prior to the loan I'd taken out to survive whilst I had no wages or benefits and would have negated the need for the loan had I known.

The disbelief and disrespect I'd been shown by so many doctors continued to cause problems for me despite being diagnosed by an internationally recognised expert in Ehlers Danlos Syndrome. A rehabilitive programme was suggested but never materialised once I returned to my own area. My shoulder surgeon looked extremely uncomfortable but to his credit apologised to my face for having missed the underlying cause of my problems. Other doctors had left themselves no room for retreat from their accusations towards me and continued to disbelieve me, to the extent that I was accused of having falsified the letter sent to my GP by Professor Grahame after he diagnosed me. It was an impossible situation for all concerned. After I was able to change to a new GP practice this problem was gradually left behind but all the accusations of attention seeking still remain on my medical records.

When my twelve month career break was over I'd still not managed to find a way of accessing any of the rehabilitation methods recommended and had to regretfully inform my employers that not only was I not fit to return to work but that there was no expectation that would change in the immediate future as I was unlikely to be able to access any treatment or support.

That was the last time I worked.

Fit for Work #fitforwork

Below is a selection of "Fit for Work" tweets from the last couple of days.  People were encouraged to tweet the usual and the difficult parts of their day with the hashtag in order to show what life really can be like for disabled people and how the WCA is failing people.

These are just some of the tweets - chosen completely at random.  To view the hash tag click on #fitforwork.  Names are twitter names, but not linked due to the time and effort that would take but should be searchable on twitter.


I chose a "pretty" bowl as my sick bowl because I spend most days with my head in it #disabilitynormal #fitforwork http://t.co/flG6At - KimbellyBull

I'm #fitforwork but am out of the country caring for my #disabled dad 2 weeks of every 4. Employ me? - Gavroche2000

Even though you're tee-total, you sound and look drunk. Always a good look for potential employers.#fitforwork - Lou_Lou_Bird

If you ask me how many sick days I took in my last two years of work and I write 3 months+ will you employ me? #fitforwork - HellsBells265

I know I have a lot to offer a potential employer. I also know I will never be able to offer it in a work setting and the number of people who think this is somehow evidence of "low self-esteem" makes me really angry - ksej

Have spent the entire morning either crying with pain or stuck on the loo.  - Sharon_J

My wife has gone to get food. I'll be lucky if I eat half of it. Fortunately employers don't mind workers being constantly hypo - JulianYon

I don't know what time I can get to work and I will need a rest when I get there.  - LatentExistence

Numbness in my hands and fingers now, and shoulder pain. Really wants my bed! Any boss would sympathise right? #fitforwork - LongDogFerret

Guessing employers don't mind that you can't sit still or concentrate for more than a minute when the pain's driving you mad - Sharon_J

In order to function I take (prescription) class A narcotics. That's OK in the workplace, right? - LatentExistence

Listening to 5 playing telephone: "Daddy feels poorly" over and over. :/ -- #fitforwork? - JulianYon

Two Hons degrees..unable to recall colleagues' names,where they sit, office postal address etc 3 months into job. - GentleChaos

talking frequently induces 'choke-until-you-vomit' (sorry if TMI!) - StickmanCrips

I can't lift the full bottle of milk or full kettle to take my turn making tea. Co-workers won't mind, right?  - BatGirl

pain clinics, skin reactions to the lights in the office, son attacking staff - time off twice a week ok with you, then? - LonAitewalker

People asked my opinion, always included me, and never found me #boring when I was #fitforwork - longdogferret

Have just changed the bedsheets. I am now completely exhausted and wanting to crawl back under them.  Additionally, having to spend the day in my dressing gown as my skin is too sensitive and sore for clothes today. That's #fitforwork, right? - Mazzlestar

If a co-worker were to take just one of my pain pills, it would shut their brain down for a month (assuming they lived). - AdAstra45

My powerchair took almost 3 weeks to be fixed. I've had it back 10 days. It's making scary bad noises. - FunkyFairy22

I cant sit, stand or walk for long, got any jobs I can do from my bed? - HovellingHermit

I hope you won't mind finding me a clean area so that I can set up an aseptic trolley and hook up to an IV line when I'm dry. #fitforwork - Sharon_J

Just had my new manual wheelchair delivered. Anyone want to push me to my government allotted office every day? - QueenieJelly

"Can you explain why you're always 'sick' on Fridays?" Erm, because I've worked while sick for 4 consecutive days. - JulianYon

Of course when I struggle with mental health, I won't have a manager who think she's lucky as 'she can leave things at home' - HellyCopeland

PA took me to the docs and chemists. Regular health-related stuff during office hours shouldn't be a problem if you're #fitforwork - Batsgirl

"You do know your eyes are pointing in different directions, don't you?" #fitforwork - BendyGirl

keep walking outside whatever the weather's like because my brain doesn't like the artificial lighting, #fitforwork - Robbsart

I  know that you can always vomit just one more time #fitforwork - Suey2y

Can't move well enough to dress myself & no help today. Can't reach up to food or microwave so surviving from fridge - Bekijane

#fitforwork lose effective use of your left side if you get too hot. This lost me my last job cos they refused reasonable adjustments. - StickmanCrips

I'll take an hour for a toilet break to wash my hands, then get stuck in the toilet because I can't touch the door #fitforwork - Aliquant

When i was #fitforwork i didnt have to go to a shop & buy something in order to have contact with another human being - Opinion8ed_dyke

I'm lucky, I am #fitforwork cos I found work #fitforme . - QueerPup

Being #fitforwork is a privilege. A sensible society embraces everybody, including those who cannot work. - KindJourneys

You can be #fitforwork one day and unable to work the next. Good health is fragile and not guaranteed; it could be YOU next. - HovellingHermit

Clare's Story

I'm a lucky one, I can do some work. It may not continue though and like many, I'm terrified.

I've been exhausted for as long as I can remember. I remember walking along in a kind of dream state when I was 7 or 8. I never went out anywhere as a teenager, I didn't have the energy. At 19 I went to Germany to be an au-pair and remember the exhaustion of that. When I returned I went straight to University to study German. In a summer job in a museum in Munich I used to imagine making a den in the coaches that were part of the exhibit. I started to forget words. A nightmare for a linguist. That's when it got worse. In my year out, I developed an allergy and was prescribed a high dose of antihistamines. I just slept through the rest of that year. The next year I developed a flu that didn't go away and slept through my final year too.

After university (I just scraped through)I was the world's lousiest holiday rep. I then got a job working nights. I enjoyed the peace but I was doing a 70 hour week and then having a week off. That was the shift pattern. It was a call centre and I wasdoing a non call centre job while phones beeped in my ear. The phone always had priority, I developed stress and from that depression. It recurred once and afterwards I went back to the doctor and said "I was always tired, I was tired before the depression, during the depresion and I'm still tired now, I just assumed everyone was this tired and just coped better, I was wrong, I need help!" I was given a load of blood tests, they all came back egative apart from the inflammation level. The doctor shrugged.

I moved to Scotland where my family live. A wonderful doctor promised to keep on searching until she found something. I moved again not long after she retired. She tried, but nothing. I was diagnosed with CFS. At my new flat I had to walk up a long steep hill to get home and down it to get to work. I'd taken on a part time job working for the council. One day per week contract plus cover as needed. After several breakdowns caused by exhaustion, I didn't feel able to commit to more. In fact on being asked tocommit to another day per week I burst into tears and was sent home crying with exhaustion. I knew there was something with my sleep quality. I never felt that CFS fitted as I got to know people who had it. I begged for a sleep study but got more blood tests. Negative, except for the inflammation rate. Having been 42 it was now 41. Five years later. I hated the doctor who remarked (when asked to look into it) "well at least its going down!" Having just suffered the agonising secondary inflammation of the eye, iritis, I'm not impressed at all.

It was iritis that gave me my second ESA experience. My first was when CAB advised me to apply as my £400 - £700 per month was barely enough to survive on. They told me that I could do some therapeutic work and waht I did fitted. I applied. No one had heard of doing work while claiming ESA but the young girl took my details anyway. Eventually the pack arrived withj a leaflet on the work I could do. It seemed it would have to be heavily medically supervised. I wanted to appear professional and keep my pride. I gave up.

Then Iritis. It effectively blinded me in one eye for a month. I couldn't do the extra hours I relied on, I couldn't even read. I went out one Sunday for the papers and wept when I couldn't read. The next month my pay slip was £293 for the month. I had rent and most of my council tax to pay. I tried again. No joy. I applied, the paperwork came through and then on a call to the benefits office someone asked, "were you paid statutory sick pay?" I told her that I was paid £293 and it barely covered any of my costs. She repeated the question. I was. it turned out. I was therefore not eligible for any help, no matter how desperate my situation. So I'm a statistic. One of those people who apparently had second thoughts once we realised that the test would root out scroungers like us. Recently I've been told I was receiving too much council tax benefit and must pay that back.

So here I am, a linguist who can barely string a sentence together, who can sleep a 12 hour night and manage 3 naps through the day. A woman who regularly falls over or walks through closed glass doors, because while part of my brain sees the danger, the other half carries on regardless. A woman who tried to replace right words with wrong words and sometimes cannot tell the difference between a 6 and 9. Who's eyesight is failing but there's nothing wrong with her eyes. A woman who gets sick after doing 5 day weeks because I have to eat something. And that's before the spending review. How would I cope if I really were sick? *hollow laugh*

Sorry, that turned into a long story. How do you compress a life and a million symptoms and illnesses?