TBofB #fitforwork Part II: #TBofBworklifestory

The Broken of Britain are asking you to take part in the next phase of our awareness raising campaign about fitness to work. Our resident benefit scrounging diarists Kaliya Franklin & Sue Marsh wrote stories about their working lives. 

If anyone would like to do the same, please let us know and we'll add it to the TBofB Work Life Stories Blog currently under development.

• #disability 
• #mentalhealth 
• #invisibleillness  
• #chronicillness
• #Carer  

Employment History by Kaliya Franklin originally posted on her personal blog  here

My Working Life by Sue Marsh on her personal blog  here

Please submit links to your blogs in a comment to this post. Otherwise email your stories to us at thebrokenofbritain.blogspot.com. This is another project that will be an ongoing concern.

The primary Twitter hashtag for this is #TBofBworklifestory

Lisa J. Ellwood, TBofB

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.

ANNOUNCING: #DWP45 : #fitforwork !!! #TBofB

What is it?

A Twitterblitz similar to our #ProjV campaign, DWP45:FFW follows up on our recent "Left Out in the Cold" initiative. The government and media persist with propaganda about people with disabilities being "scroungers" and overt suggestions that the majority are deliberately avoiding employment. FFW particularly addresses the very real challenges people with disabilities face with work. However, because of the preponderance of "gloom and doom," we wanted to create an opportunity for fun in addition to the usual seriousness.

Details:

• 1 tweet at a time
• Ensure the use of a hashtag, otherwise we won't see your tweet
• Not more than 140 characters
• Start: Friday, 08 April 2011 - NOON
• Ends: Sunday, 10 April 2011 - 18:00
•  A DWP : FFW website is under development at http://fitforwork.wordpress.com. As with #ProjV, #DWP45 #fitforwork will be an ongoing concern.
• Facebookers: Feel free to post #DWP45 #fitforwork submissions on our page's Discussion Board
• For anyone not on Twitter or Facebook - participate in #DWP45 : #fitforwork by posting a comment on this post
  

 

Hashtags:

#DWP45 

SATIRE: The 140 Character Twitter Commandments of the Powers-That-Be. Admonishments to push we scroungers off of the internet and into *acceptable* work. Much-needed #funfriday levity - but we'll take them as long as you can thing of them!

Examples (previous tweets under a hashtag-that-shall-not-be-named)

• Sale of PCs to the disabled banned. If you can use it, you’re not sick enough for benefits
• Stephen hawking has a job and can use a computer… He is our benchmark to which we gauge…
• That deaf, dumb and blind kid who plays a mean pin ball. If he can do that, he can do a proper job
• Disabled by paranoia? Yet another great qualification for writing for the Daily Mail.
• The deaf to be employed in all customer contact services for the DWP
• People with multiple personality disorders can easily take on more than one job

#fitforwork

140 Character Twitter narratives from people with disabilities about what it really means to be *fit for work*, contrary to the assertions by government, media and the general public.  Examples can be found on the TBofB Blog

#tbofbsoulfoodsaturday

Musical food for the soul; the balm the soothes and lifts us up - #tbofbsoulfoodsaturday suggested by TBofB Supporter Jade A-S Wilson

Note: also check out the TBofB MusicalMotivation Playlist on YouTube where we will add these submissions.

#TBofB

The "standard" hashtag for TBofB-related tweets

Lisa J. Ellwood, TBofB

Welfare Reform Bill Committee Update (3rd Week)

A member has just pointed out that there seems to be a fair amount of doom and gloom on this blog and its comment threads in the past few weeks. The despondency many are feeling is understandable, as the pitfalls of welfare reform loom large. But remember, we have not lost yet and there are real prospects of amending the Welfare Reform Bill.

The Welfare Reform Bill Committee met on Tuesday for its  9th and 10th  sitting. Parliament is now in recess and the Committee will not meet again until the 26th of April.

When it does there is hope, primarily due to this statement by Margaret Curran, Shadow Minister for Disabled People:

I caution him that in any discussion about disability, the disability movement will say, assertively, “Yes, of course you must look at the needs of the most severely disabled, but you must be very careful how you define that.” If we do so at the expense of those who have moderate disability, such as learning difficulties, or those who are, perhaps, autistic—I shall provide examples as I make my comments—we do them a profound disservice. We should look at disability in the round rather than simply at the most severe cases.

Kate Green MP supported this by saying:

My hon. Friend is absolutely right. Does she also agree that one of the reasons for ensuring adequate financial support for people with less profound disabilities is that they are precisely those who may be able to enter paid employment? To remove the extra financial support that might enable them to make that move—because they are required, or choose, to do so—seems short-sighted in the context of the universal credit.

This exchange is heartening, as it shows that the Opposition are beginning to understand our arguments. and particularly so as it demonstrates that lobbying by The Broken of Britain is at least having some impact. Although the Bill is unamended as yet, Margaret Curran did manage to extract a policy commitment from Chris Grayling to examine the interaction between the support group of universal credit and those who currently receive the severe disability premium, which is a small victory.

The mountain we have to climb was summarized by Chris Grayling, Minister for Employment, who said:

The focus of our support, and the place we have chosen to invest the resources available, is the support group. There are a small number of cases where, as a result of programmes such as Work Choice, which is operated by the Under-Secretary of State for Work and Pensions, my hon. Friend the Member for Basingstoke (Maria Miller), some people have the opportunity to get back into work despite having a severe disability, although there is no obligation on them to do so. People in the work-related activity group are judged to have some potential to return to work, either now or in future, and they have an obligation to take part in work preparation activities.

We have made a conscious policy decision to concentrate our support on people in the support group, to increase the resources available to them and create a simplified and more streamlined system. Where adjustments must be made because people are moving around between different categories of support, we have put in place transitional protection to ensure that nobody loses out in cash terms. That is our approach and we have made provision in the Bill to help the most severely disabled people.

It seems that this Government's narrow view of what constitutes a disability will not be changed easily. The other good news is that Kate Green managed to extract reassurance from Chris Grayling on the continuing rights of the claimant to appeal the work-related activity and claimant commitment.

The Government's narrow-mindedness was further underlined when Kate Green proposed that the new claimant commitment for universal credit should be bipartite, with commitments from the Secretary of State as well as the claimant. Chris Grayling replied that:

My view is straightforward: we are providing claimants with significant financial support; in return, we want them to make a real effort to get into work. That is what lies at the heart of the claimant commitment. Of course, Jobcentre Plus and Work programme providers have an obligation to provide satisfactory support to claimants as they look for work.

Kate Green then said:

I am very disappointed with that response. It is an extremely narrow view of what an enabling welfare state should look like and the principles on which it should be based. It appears to ignore the common human interest that we all have in a welfare state that adequately supports people and in which we all have a stake. Irrespective of our circumstances, we have a right to appropriate support.

At the moment, this is all we have, and it is hard to know what and how much to hope for. It is certain that this Government plans to push the Bill through. But it is also certain that we are being heard, and that The Broken of Britain is having an impact that will see a major push for amendments. This Bill has another month of Committee meeting, and a further two stages in the Commons, even before it spends months with the Lords. There is a long way to go. Reassuring you that everything will be ok would be an empty gesture. 

The danger is real. But so is the hope.

by Rhydian Fôn James for TBofB

It's no wonder politicians are ignorant about the trials facing the disabled traveller

Thanks to the Guardian's Joe Public blog for publishing the second part of Kaliya's 'ability to mobilise' trip to London here.

Stop the world, I need a rest! #TBofBTT

While I am sick at home the world doesn’t stop. There are weddings. There are big shows, music festivals and other events. There are protests that I want to attend. There are real-life meet-ups for groups that have been chatting over the internet. My intended schedule for the next month is hectic: First it is the Prescott Bike Festival, to raise money for Blood Bikes. The following weekend some friends are getting married, 180 miles away from here. The week after that, we’re up in court for non-payment of council tax. (Which we disagree that we owe, due to benefit chaos caused by attempting to do the right thing.) Over Easter my wife’s parents will be visiting, and we will have a big dinner together with my parents. The weekend after that I am visiting Brighton for the weekend to meet up with other politically aware people I talk to on twitter. Then there is a gospel choir performance a few days after that. On top of all this, I have jobs that I need to do such as some work on my wife’s motorbike. Oh, and I’m moving house in the next two months.

It just isn’t going to happen like that.

At the moment I can spend around eight hours per day out of bed, and not every day. I can’t predict when I can get out of bed, or when I can do anything that is expected of me. On many days I can choose to either have a shower, OR to wash the dishes, OR to do other things that I want to do. Given that, how can I do any of the big things I just listed? In reality, I have to prioritise. I have to choose what is viable, and what is really important to me. I have to acknowledge that a really big weekend will wipe me out for a week afterwards, likely leaving me unable to even get my own food and drink and struggling to reach the bathroom. Out of all that I listed above, the bike festival will depend entirely on how I feel that day, it is not practical for me to get to the wedding, since the travel and sleeping on a friends floor will destroy me, and I can’t afford it anyway. The visiting family, I can just about handle as I will disappear off to rest lots while they are here. The trip to Brighton, I am going to manage if it kills me. Unfortunately, it just might.

This is the reality of long-term sickness and disability. 

This is #disabilitynormal

Guest post by @latentexistence. The original can be found here

"The real worry among disabled people is that this may be deliberate..."

Kate Green MP has written a fantastic article on welfare reform and disabled people, which has been flagged up by Community Care.

She says that: "The indifference to the structural inequality that disabled people experience offers a starkly clear example of the way that this government believes its obligation is to help only those in deepest need."

Kate is the former chief executive of the Child Poverty Action Group, and is an expert on welfare and a respected campaigner against poverty. Her passionate piece on the Welfare Reform Bill, cuts and disability is worth a read.

#TBofB Brief on the Government’s response to the DLA reform consultation

Brief on the Government’s response to the DLA reform consultation

1. The Government’s response to the consultation on Disability Living Allowance reform was been published on the 4^th of April, 2011.
2. The consultation itself closed after the Welfare Reform Bill was published on the 16^th of February, so that the consultation played no part in shaping the Bill.
3. This brief offers an analysis of the Government’s response to the core issues of DLA reform, rather than the process issues of PIP.
4. However, the concluding remarks apply generally.
5. There were 5505 responses in total, including nearly 2500 individual responses, 500 from organisations.
6. The Government say that “To supplement the consultation document we held a series of meetings with disability organisations at Ministerial and official level, and attended events with disabled people and their organisations,” but do not give any detail as to when these meetings were held and who was present.
7. The consultation begins with a foreword by the Minister for Disabled People in which she repeats the arguments that she presented during Work and Pensions Question Time in Parliament on the 28^th of March, 2011.
8. The document’s executive summary reaffirms the Government’s “commitment” to reform, howeverIn the chapter n the need for reform, the Government simply repeats the same case that was demolished by The Broken of Britain in December¹, and evidence that 71% of caseload growth in the past 8 years can be explained² by population growth and demographic change, whilst an explosion in quarterly on-flows can be ruled out for the rest of the increase, and that It is not true that there is no system to ensure that rewards remain correct as, since 2000, legislation has required that all awards are subject to review after an appropriate period of time based on an individual’s circumstances.³
9. In the chapter on the need for reform, the Government presents no supporting arguments from independent research, DWP Research Reports or DWP Working Papers.
10. The question-by-question detail on consultation submission seems to suggest that the Government cherry-picked the responses that supported their "commitment" to reform.
11. Question 1 and 3 asked what barriers and extra costs were faced by disabled people. Responses to the questions appear to have listed the wide range of barriers and costs face. The Government responds by using this lack of consensus to say that: “The principle of improving outcomes and giving people more choice and control over the services they receive [...] underpins all the health and social care reforms.”
12. Question 2 asked what should stay the same. The discussion of this question was given the least space in the document. The only responses discussed are the maintaining of special rules for the terminally ill, and maintaining the non means-tested and non-taxable nature of DLA. The Government’s response is to agree wholeheartedly at length, despite it being stated clearly in the consultation document that “The new benefit will not be means-tested or taxable, and payment will not depend on having paid National Insurance contributions.” and “We will continue to support those in the most difficult circumstances by maintaining special rules for people who are terminally ill”. As such, the Government response is empty.
13. There were 5505 responses to this question, yet only three minor points are discussed in this document.
14. There were other points about what should remain the same, including by The Broken
    of Britain⁴, and these views were not mentioned in the response document. Question 4 asked about the change from 3 rates of Car Component of DLA to 2 rates of Daily Living Component: specifically, whether this would make the benefit easier to understand and administer, and what disadvantages or problems might stem from the problem. The response tells us that “The majority of organisations welcomed the move to the new, broader definitions of the daily living and mobility components as being a better reflection of the real experience of disabled people’s daily lives.” This does statement does not give an accurate reflection of views, and does not mention precise numbers.
15. The only opposing opinion mentioned is that Some organisations commented that, by raising the threshold at which an individual would qualify for benefit, those with some, but not significant, support needs would be disproportionately affected and could end up using other government services at greater cost to the state.” There were other opinions that were not mentioned. The Broken of Britain raised the point that simplifying the benefit by reducing the number of rates would mean that PIP was less able to adapt to circumstance, as more rates meant a greater number of combinations that could adapt to the claimant's need. Others made the same point. These arguments were ignored.
16. The Government says that most organisations are happy, and repeats its original plans on "simplification".
17. On issues where opinion was split down the middle, or slightly opposed to the Government's proposal, such as on extending the qualifying period and automatic entitlement (Question 5), the Government notes some, but not all arguments, and then repeats its intention from the consultation document
18. Not all contrary arguments are made in the document
19. In Question 8, on including the use of aids and adaptations in the PIP assessment, where there was strong feeling against the Government's proposals, the Government state that they will do what they had originally planned because "we wish to target support to those disabled people who are least able to participate and to live independently".
20. The Government offer no supporting evidence for their “wish”
21. In Question 11 on face-to-face assessment the Government, faced with the arguments, resort to saying that "we believe that, for the great majority of people, a face-to-face consultation between the individual and a trained independent assessor will play a key role in creating a fairer, objective and more transparent assessment for Personal Independence Payment than that which currently exists under DLA."
22. They offer no substantiation of their “belief”.
23. Annex 1 lists the actions suggested in responses and the Government's "next steps". These steps seem to involve "listening", "[recognising that] disabled people are experts in their own lives", "[continuing] to to work with disabled people", and plenty of buzzwords but very little in the way of detail.

The consultation submissions were badly analysed and presented, with many key arguments seemingly ignored in favour of those supporting the Government’s desired outcome.

The Broken of Britain, 5^th April 2011

PDF version accessible via Google Docs here

1 The Broken of Britain, Demolition of the case for reform, 09 January 2011

2 Left Foot Forward, The ‘inexplicable’ rise in Disability Living Allowance explained,
   14 February 2011

3 Consultation response by the Disability Benefits Consortium, January 2011, p8

4 The Broken of Britain, Submission to the Consultation on DLA reform: PIP Goes The Weasel,
   10 February 2011

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

Migration from Incapacity Benefit to Employment and Support Allowance #fitforwork

Yesterday was a big day for The Broken of Britain as the formal rollout of ESA had finally alerted the media to these benefits changes. Around 10am, Kaliya started to tweet on the topic under the hashtag #fitforwork with enormous success. Below is a summary of the changes that we prepared for the press:

Major Points
1. ESA is not fit for purpose. The system is badly designed, in terms of eligibility testing and the process of claiming the benefit

2. WCA is not fit for purpose. Test for eligibility does not work correctly, with many wrongly found fit for work and a high percentage of appeals

3. the appeals procedure is not fit for purpose. People are automatically assigned to the lower rate of ESA while appealing. This loss of income makes it harder to appeal

4. WRAG is not fit for purpose. Unfair conditions imposed so that many claimants must work for their benefits when unfit to do so

5. The Government is planning to time-limit ESA to one year, meaning that claimants will be means-tested after a year. If the claimant’s partner or spouse works more the 24 hours a week, they will lose the benefit. This punishes working families.

Supplementary notes

claimants must undergo this work capability assessment (WCA) to determine whether they are eligible for a replacement benefit, employment support allowance (ESA)

over the next three years 1.5 million people currently claiming Incapacity Benefit will undergo the work capability assessment, carried out by a medical and IT company, Atos

a complex computer program will help a team of "disability analysts" to rule on who is sufficiently fit for work


the estimated fraud rate for Incapacity benefit is 0.5% - the joint-lowest fraud rate in the benefits system according to the latest available data - so why is this benefit seen as being so problematic?

media focus on 859,000 people claiming sickness and disability benefits for over 10 years, ignoring the fact that sickness and disability is often a long-term problem

the system has been in place for new claimants since 2008, but will be expanded to retest all existing IB claimants from the start of this month

11,000 existing claimants will be retested every week

the new test is tougher than the old version, and the government expects to save £1bn over five years by encouraging people into work, or failing that on to a lower-paid benefit

speakers at a meeting between MPs on the Work and Pensions Select Committee and claimants who were part of the pilot of ESA gave negative accounts of their experience of being tested

the test has been vigorously criticised by charities such as Citizens Advice and by a government-commissioned independent review, saying that the process is impersonal, and ill-equipped to gauge the seriousness of mental health conditions, or the nuances of complex medical problems.

many undergoing the WCA felt it was assumed that they are lying or exaggerating
the WCA is physically-oriented, and uses a list of limited and disjointed ‘descriptors’ – such as the distance the claimant can walk and for how long they can stand – to assign points

15 points are required for a claimant to be declared unfit for work, with points ‘awarded’ on the basis of ability to do things like picking up a one pound coin
written evidence including specialist medical advice is all but ignored and the

face-to-face assessment means that only a ‘snapshot’ consideration is made, disadvantaging those with mental health problems or hidden conditions

the WCA test is not fit for purpose, frequently declaring people with serious health conditions fit for work on the basis of how many points are scored

during the preliminary roll-out of the test, people with terminal cancer, multiple sclerosis and serious mental illnesses have been found fit to work

the health care professionals (HCP) who run the WCA are not necessarily doctors, and may well have no knowledge about the medical condition of the claimant they are assessing

people with mental health problems have complained their condition is not taken seriously

people with complex illnesses report that the tick-box system is not able to cope with the nuances of their problems

one claimant has originally been given zero points in the assessment, despite having multiple sclerosis, and providing a letter from a surgeon stating they were too ill to work

in pilots 30% fewer people have been found unfit for work and 70% fewer people have been found eligible for the full-rate, unconditional support benefit

a report commissioned by the Department for Work and Pensions found that health care professionals (HCP) wanted more supplementary medical evidence to help them make decisions, and more discretion over individual cases

Prof. Paul Gregg, a prominent welfare reform expert, recently told The Guardian that: "The test is badly malfunctioning. The current assessment is a complete mess,"
Gregg, who helped design the new ESA, recommends a further trial before it is introduced nationally

since early 2009, more than 240,000 cases contesting the result of the health tests have been accepted for tribunal hearings

in total, 40% of claimants whose claims are disallowed appeal the decision
40% of appeals are successful, with decisions overturned at tribunal – this figure rises to 70-80% when the claimant has representation

when appealing a decision claimants are automatically assigned the lower rate of ESA
a report commissioned by the Department of Work and Pensions found that the loss of income for those on the higher rate of IB made it more difficult to appeal

an independent review of the WCA in November 2010 found serious flaws in the way it was functioning and called for major improvements

the government has promised to implement these recommendations, some politicians, charity workers and academics think the roll-out is going ahead too fast

beyond the immediate issue of the WCA, the work-related activity group is symptomatic of the deeper problem in ESA

the WCA can assign people to the WRAG, where ESA is conditional on work-related activity, and the Support Group, where the benefit is paid at a higher rate and without conditions

the WRAG and Support Group are not clearly defined in terms of purpose, but are often thought of as the ‘group for those who will eventually be fit for work’ and ‘will never be fit for work’

very many severely disabled people who will never be fit for work wrongly assigned to WRAG

a report commissioned by the Department of Work and Pensions found that staff involved with ESA were concerned about process issues, such as delays and IT problems, and
more substantive issues such as the allocation of customers to particular claim
outcome group (WRAG or Support Group)

a report commissioned by the Department for Work and Pensions found that advisers felt that the scope for helping many claimants in WRAG back to work was limited

providers targeting adviser resources explicitly on those closer to the labour market, so that even those in WRAG are given limited support unless they are very close to being fit for work

a report commissioned by the Department for Work and Pensions found that there are risks attached to the significant involvement of for-profit organisations.
They are likely to follow profit maximisation strategies shaped by contract
incentives and this may not necessarily deliver what is best for clients, especially for those with greater barriers

a report commissioned by the Department for Work and Pensions found that several US interventions on “back-to-work” schemes for disability benefit claimants have shown no impacts on caseload size

the Department for Work and Pensions knew about all the problems with ESA before it was implemented. Why did they proceed?

The Brain Fog #TBofBTT

I think I'm the only disabled person I know who doesn't refer to themselves as a Spoonie. It's not that I have anything against the term, and I can understand why people do use it, it's just that I never have. Probably because I'm too lazy to explain the concept to people, tending instead to say "I'm in constant pain and my body is working harder than most, both of which make me very tired". Subtext - I'm not lazy, and I would love to have more energy, so please take your judgement elsewhere!

The term Spoonie hadn't even come to my attention until I joined Twitter, and started speaking to other disabled and ill people about in less than fully functioning bodies. I'd always had contact with other EBers, but if we discussed our health at all, it was always specific to EB and it's complications (blistered eyes, blocked oesophagus etc). By speaking to my Twitter pals, especially those linked to The Broken of Britain, I started to understand life with a disability more than I ever had before. And though I don't call myself a Spoonie, one term took a figurative leap off of the screen and shouted "Yes! I actually exist!" - the Spoonie brain fog (search for #brainfog for evidence).

I don't remember having the brain fog until the end of my first year at university, though I'm sure I had phases of it before that time (my brain has done a fine job of editing my long term memory into snapshots from the past twenty-four years). I know I'm lucky to have gone that long before it hit me properly, but when it did, it hit hard. My renown loquaciousness abandoned me the instant I tried to write essays, leaving me slumped over the keyboard and close to tears, struggling to recall the sentence I had formed in my head ten seconds ago. It didn't occur to me that it was to do with the fatigue of living with a disability, and so I looked for causes for it; in the process I found a major hormone imbalance and was eventually diagnosed with long-term bipolar disorder, but the medications for each of those problems failed to clear the fuzziness in my head. So the sense of relief and belonging I felt when I saw that term, and that hash tag used amongst my Twitter friends, was almost palpable. It wasn't a failure in concentration on my part, it wasn't stupidity, or a willingness to let my perspicacity slide away from me, it was the result of living in a body that has to work its metaphorical socks off just to keep going every day. It sounds awfully self-pitying to explain all of the trappings associated with ones health problems or disability, and so more often than not, we don't. People around us see the surface, but they don't see the frantic paddling our bodies are doing beneath it. When you're born with a disability or illness as I was, it isn't any worse than developing one, it's just maybe more difficult to understand what is usual and what isn't, as there is no 'life before' to use as a point of reference. Though I wish none of my friends were ill or disabled, having their experiences to learn from has been a huge help to me.

After two short spells in hospital recently, I was checking my emails and realised that I had no idea what the ones from my The Broken of Britain cohorts were referring to, and yet I knew I should know. It's a sign of how easy it to throw a brain that is surrounded by the Spoonie brain fog off course - two days away from my emails, and I might as well have been living in a cave for a year for all of the insight I had. But although it still frustrates me, and although I still haven't really accepted that this feeling befuddlement isn't going to leave if I shake my head hard enough, I feel much easier now I can email TBofB team back, as I did last week, and say "I'm out of the loop". And they know exactly why that is, and they pull me straight back in.

NB: I wrote this after five false starts and lots of irritated tutting and cursing!

By Melissa Smith, TBofB. The original can be found here

Whitewash: Government’s response to the consultation on Disability Living Allowance reform..

The Government’s response to the consultation on Disability Living Allowance reform has been published today, at long last. It is grossly unjust that the consultation itself closed after the Welfare Reform Bill was published, so that the consultation played no part in shaping the Bill, but it is probably not illegal.

The consultation response is a hefty document, and it seems that there were 5505 responses in total, including the joint submission by Carer Watch and The Broken of Britain to which hundreds of you contributed. Sadly, if predictably, this outpouring seems to have made very little difference to the Government's rhetoric. Annex 1 lists the actions suggested in responses and the Government's "next steps". These steps seem to involve "listening", "[recognising that] disabled people are experts in their own lives", "[continuing] to to work with disabled people", and plenty of buzzwords but very little in the way of detail.

The response begins with an empty foreword by Maria Miller, the Minister of Disabled People, who seems to think that the more often she repeats her message on the need for DLA reform, the likelier it is to become true. On the need for reform, the Government simply repeats the same cas that was demolished by The Broken of Britain in December. The information was included in our consultation submission, but the Government ignored it and repeated the same flawed case.

The disturbing thing is that this isn't all they have ignored. The question-by-question detail on consultation submission seems to suggest that the Government cherry-picked the responses that supported their "commitment" to reform, and ignored the rest. For example, the Government's response to the consultation submissions suggests that they "agree that Personal Independence Payment should remain a non-means-tested, non-taxable benefit that is paid to disabled people whether they are in or out of work." However, as means-testing was not proposed initially, whe spend space telling us what we already know?

On the design of the benefit, the Government response runs for only half a page. Two quotes are shared: one supporting reform, and one refusing to comment without detail. Surely there were other responses? The Broken of Britain raised the point that simplifying the benefit by reducing the number of rates would mean that PIP was less able to adapt to circumstance, as more rates meant a greater number of combinations that could adapt to the claimant's need. However, the Government says that most organisations are happy, and repeats its rhetoric on "simplification".

On issues where opinion was split down the middle, or slightly opposed to the Government's proposal, such as on extending the qualifying period and automatic entitlement, the Government listened to what people said. And then responded by saying they'd stick to their original proposals. The same thing can be noted in the Government response on face-to-face assessment - faced with the arguments, they resorted to saying that "we believe that, for the great majority of people, a face-to-face consultation between the individual and a trained independent assessor will play a key role in creating a fairer, objective and more transparent assessment for Personal Independence Payment than that which currently exists under DLA."

And on issues where there was strong feeling against the Government's proposals, such as on the consideration of aids and adaptations in PIP assessment? Again, they will do what they had originally planned because "we wish to target support to those disabled people who are least able to participate and to live independently". When the Government makes policy because they "believe" or "wish" something, what is the point of consultation? Whither evidence-based policy?

That must then be the initial conclusion: this consultation response is a whitewash, from beginning to end. A detailed breakdown and analysis of the response will appear on the blog very soon.

Call for Evidence on the Migration from IB to ESA

The Broken of Britain is putting it's own evidence to the Work and Pensions Select Committee inquiry into the Migration from IB to ESA. Individuals are encouraged to submit their own evidence, but the group submission will be made on behalf of all our members who are not able to do so.

Please tell us about your experience of the migration from IB to ESA - focusing on the information you received and what would have been useful, your experience of the WCA, and the outcomes for you. You can post responses here or e-mail rhydian@thebrokenofbritain.org

Below are the inquiry's full terms of reference:

* 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 the impact 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.