Archive for the ‘ esa ’ Category

The Dreaded Pink Form 2013

This week I received a copy of the “Dreaded Pink Form”, also known as the ESA50 or Limited Capability for Work Questionnaire. I get one every 12 months and as it stands I will be getting one every 12 months until I’m claiming a pension or I’m dead. It’s so the DWP can assess my fitness for work and decide if I should still get ESA. As my condition is only expected to degenerate this isn’t something I personally feel is necessary. I could understand maybe once every 5 years if they want to keep checking but every 12 months? It’s a waste of government money, my time and damaging to my mental health. Still, as all the major political parties think it is necessary I’ve got no choice but to acquiesce and protest about it.

Picture of the ESA50 form. You can click on it to enlarge.

The first time I filled in a ESA50 I was invited to attend a Work Capability Assessment (WCA) where health proffessionals working for a IT company called Atos assessed my fitness to work. Much to the surprise of everyone I knew, my doctors and the job centre they found me fit to work. They then used that decision to turn down my application for Disability Living Allowance (DLA). It took 18 months to get the decisions over turned. During that time my disability and the high cost of living with it didn’t go away, I just wasn’t entitled to any support to help me live with it. I fell into debt and depression. Fortunately for me the appeals tribunals were both less than 15mins from start to finish because of the  abundance of evidence on my side. As a result of having to live through that nightmare I’m always very apprehensive about these forms because I know what could happen if something is misinterpreted.

It may sound a bit paranoid to suggest that they would try to purposefully trip up claimants, but as I think I can show that is precisely what this form does. It makes it very difficult to describe your condition and/or disability in a way that tallies with the criteria.
Take question 1, it asks how far you can move around without difficulty. The possible answers are; 50m, 100m, 200m or more and “It varies”. Can you see the problem with that? What do you tick if you can’t move more than 20m with difficulty? What do you tick if you can’t move more than 1m? Do you choose the 50m category and look like you can move further or do you choose it varies and then hope they don’t use the fact you said it varies to suggest the issue isn’t a permanent one? 
It’s especially telling as one of the criteria to enter the support group is not being able to move 50m. By making it so that people in that situation don’t have an easy “less than 50m” box to tick then people will be forced to tick a box that doesn’t describe their situation adequately and could contribute to a decision not to award appropriate support. I ticked the 50m box last year even though I can manage a maximum of 30m with severe pain and associated vomiting or 1-2m without. I explained that in the box below and included a letter form my GP which said precisely that. They didn’t place me in the support group until I wrote an appeal because it wasn’t “clear” from my form that I couldn’t walk 50m without pain.

A picture of question 1 in the ESA50 form. You can click on it to enlarge.

It’s not a one off either. Add to these questions the extra pressure added in by other changes to the process which include using imaginary wheelchairs and ignoring the overlap between cognitive/mental & physical health in this years ESA50’s it all becomes extremely stressful.

The good thing to come ou of this pink form is it’s reminded me that there is still a huge battle to be won with regards to ESA, and that where we may not win it all – at least not straight away – we can try to make some ground by trying to get the DWP to improve little bits of it’s system. For example, changing it’s questions so they are fairer and tally with the criteria being tested against.

I’m going to put my thinking cap on and try to work out how best to challenge the DWP on this score. Hopefully I’ll be back with some ideas!

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A Response To Philip Hensher’s Article

Dear Philip,

I read your article (Some people on disability benefits are fit to work) yesterday and I saw the backlash on twitter. I have some thoughts on it and I wanted to share them, as a disabled woman with both physical and mental health problems who has been through the wringer with the DWP and it’s WCA process plenty of times.
I read every word and upon finishing was struck by two things. Firstly, that whilst apparently arguing for  some form continuing assessments of sick & disabled benefit claimants you were against the Work Capability Assessment in it’s current form. That is something I applaud. I too am against the current WCA’s. I’m very glad to hear you speaking out against them and I would love more voices to join the throng. 
The second is that whilst suggesting that there is some need for assessment you (I assume accidentally) propped up some rather pernicious myths about people claiming disability benefits. I hope you can understand that for many of the people that will have been attracted to read your article that might have made pretty painful reading. I will just go through some of those myths now as I assume you might not be well versed with them.
That there is a high percentage of people claiming these benefits that shouldn’t be.
You devote about 50% of your article to talking about people who defraud the system. I would argue that this is providing false balance to these stories. The DWP’s own statistics show that less than 1% of claims are fraudulent. You are not the first person to cover the issue in this manner (either to make it seem more contentious or exciting, or simply because you believed it to be true because of the media coverage you have ingested) and nor will you be that last. The problem is that many of us are suffering, I personally believe, in a huge part to the false balance given to these stories.
As a wheelchair user I have noticed the abuse I receive in the street has changed over the last few years. It’s no longer about how I look (funny, disgusting) or about how I might be “catching”. Instead it is about how I am probably a lazy, workshy, scrounger and a benefit fraud. People feel free to approach me in car parks and ask if I really need the blue badge parking space or if I just use the chair to get a free car. It’s painful and it’s part of my day-to-day existence. It’s part of many other peoples too. There has been a huge rise in disability hate crime over the last few years. I assume from what you have written it is not part of your everyday life, but I don’t know. When people for whom this is their day-to-day reality read articles like yours they often have an (understandable) emotional response which can vary from sadness to anger. I became pretty despondent personally as what I thought was a very promising piece propped up the “scrounger rhetoric” as many of us call it. I hope you can see that when people in the media spend as much, if not more time talking about scroungers the effects on the vast majority of disabled people 
That mental health conditions are not as debilitating as physical health ones.
The way (or tone) you take when talking about people who claim benefits for mental health conditions such as anxiety and depression seems pretty sceptical to say the least. This reader at least felt like you were either ignorant of the how severe these conditions need to be to claim ESA or you were suggesting they weren’t really very debilitating. As I hope you are aware many people who live with mental health conditions are routinely told to “snap out of it” or are treated as if it is something they could just “get over it” with the right motivation and the way they were talked about in your article felt like you too were propping up this myth. I know that many people who responded angrily to reading your article were most hurt by this sentiment.
But, I can’t talk about other people. that’s not my place and those aren’t my stories. I can however talk to you about myself. I have a mental health condition, Post Traumatic Stress Disorder in fact. I also have a chronic pain condition stemming from a lot of damage to my abdomen and the nerves within. I have quite a bit of personal experience of dealing with both kinds of health issues. Thanks to the PTSD I can’t manage 15 mins in a whole host of seemingly innocuous environments (for example; being near petrol or the sound of breaking glass) because they trigger flashbacks during which I relive experiences that were so horrific the first time around they left me with a mental health disorder. I would often describe this, to those I would really rather not have a huge conversation about this stuff with as panic. In my experience panic can be as debilitating, if not more so than severe physical pain at times. Panic, fear, terror, fight or flight responses, what ever you want to call it is extremely unpleasant and can govern a persons life. We need to remember that when we talk of claiming ESA for anxiety or panic disorders we are not talking about people who experience panic on a once a month basis, if we were then they would not be getting ESA. We are talking about people who often experience it multiple times daily to the point it may stop them talking to strangers, leaving the house or wearing certain colours. It will also often have physical manifestations such as uncontrolled shaking, nausea, pain & high blood pressure. Someone who can cycle for over 15mins but can’t talk to people without crying and shaking in fear isn’t very likely to be employed. All because it is a mental health disorder does not mean it’s any less likely to be disabling than a physical health problem. 
That some conditions are more worthy than others
You mention obesity in your article and say that “The only possible purpose for public expenditure there is to help them back into fitness for work.” I feel the same way reading this I did when the Daily Mail published it’s bogus article about the parents of lots of children with ADHD being given free BMWs. There is a gulf of misunderstanding when it comes to these statistics which list which disorders people have and what they are claiming. Many people claiming ESA or DLA have more than one condition but the DWP only bothers to record the first condition listed on it’s forms. So, for example someone with ADHD, Obesity & EDS will only be recorded as claiming one of those conditions, possibly ADHD or obesity. It’s hardly ever as simple as black and white as it looks.
I also was disappointed that you used your platform to in many ways make it seem as if obesity (to a disabling enough level one would be able to claim ESA) is a lifestyle choice/moral failing and that people shouldn’t be supported. I hope you realise that obesity is often a side effect of many medications (steroids, beta blockers, anti-seizure medications etc…) as well as medical conditions  either directly (such as PCOS, Cushings & Prader-Willi syndromes) or indirectly by limiting activity or changing diet (such as arthritis & drepression). Even forgetting all of this I personally believe that if someone can’t mobilise, breathe, manage continence of anything else similar then regardless of the reason behind it those people deserve support. If we start deciding what conditions are worthy of being disabling rather than looking at the effects of conditions upon individuals we risk leaving a lot of vulnerable people behind.
I believe that you could have written the same article, which I believe can be summed up as “The WCAs as they stand need to stop but that we should talk about what will replace them that will be fair to everyone”, without using the afore mentioned problematic dialogue.
I’m going to leave it there, because I’m tired of writing and I’m sure you are growing tired of reading criticism. I do really respect you for having tried to take a stand against the WCA’s and I’d love to see you continue to write about these issues in the future but I’d also like it if you could try and consider how you talk about sickness, mental health problems & disability when you do so.  
Warm Regards

[Edited to correct typo]

Imaginary Wheelchairs & Other ESA Changes

As you may or may not know on the 28th January they are making some more changes to ESA assessments. Both of the proposed changes are dangerous and counter productive (unless you want to produce a super-flawed, biased and unfair system). They go a little something like this;

Imaginary Aids, Adaptations & Treatments

In a nutshell, they will be changing the system so that if a person could do something with appropriate aids/adaptations or has a condition that sometimes benefits from a specific treatment (even if they don’t have access to them) they can be judged as if they do. They also do not have to ask your opinion about it.

An example would be; a person who attends a meeting and explains that because of a condition, let’s choose chronic pain, they cannot walk 50m. The assessor decides that they think that with a wheelchair they could do it. The assessor then says nothing to the claimant and notes it on the assessment form. The person is then found fit for work or placed in the WRAG rather than the support group on the basis of an imaginary wheelchair. Of course, they don’t then give the person access to a wheelchair. They just seem to expect them to magic one out of thin air. Bitter experience has taught me that the NHS doesn’t give wheelchairs to a lot of people who would benefit from them. It’s also taught me that getting a NHS wheelchair doesn’t mean you can use it. If your home is at the bottom of a hill, has steps in and out, doesn’t have wide enough halls or door ways or any other number of issues are at play the chair is just a (often) ugly reminder that you can’t get out. Getting your home adapted for a wheelchair is very difficult at the best of times, heaven forbid you privately rent and your landlord doesn’t want you to ramp the front garden. All this doesn’t take into account our imaginary claimants ability to propel a wheelchair either. It would be laughable if it wasn’t a real threat.

The same goes for treatments. Did you turn down CBT for Fibromyalgia? If they think it would have made it better then they can “imagine” how you may have been if you’d had it and assess you accordingly.

Ignoring the Intersections Between Physical & Mental Health

The ESA50 (the pink form claimants get sent asking them to detail their conditions) is split into two sections; Part 1 (‘Physical Disabilities’) and Part 2 (‘Mental, cognitive and intellectual function assessment’). At the moment people who experience problems such as poor bladder control because of a mental or cognitive disability will explain that in part 1. Now they are proposing to make it so that only the effects of “a specific bodily disease or disablement” will be considered in part 1, whilst Part 2 will only consider the effects of “a specific mental illness or disablement”.

This is a massive issue as many conditions have both mental/cognitive and physical components. It’s also problematic because many physical health problems exacerbate mental health conditions and vice-a-versa. 

How to help


Sue Marsh over at Diary of a Benefit Scrounger has issued a rallying cry and offers some great advice about what you can do to help fight these changes (link to her post). 

You can email your MP by going to this webpage and searching for them by your constituency and send them a link to this report. If you don’t want to email them then you can tweet them with a link to the report saying something like “Dear [MP name] please read this report about damaging changes to ESA http://www.ekklesia.co.uk/ESAbriefing  #esaSOS”.

You can try to spread the word by tweeting, emailing & facebooking others (friends, family, reporters, councillors , and asking them to spread the report too.

Job Hunting – Part Two

I said I’d write a follow up when I had more news and now I do!

I did apply to a service designed to help disabled people into work but discovered to my dismay that they wanted a complex referral from social services. Not having any idea how to sort it out and quite frankly not having the energy to do so I have not gotten around to sorting that out.

I have kept one eye on the governments Job Search website but to no-avail. The closest I’ve come to a really flexible job that would fit around my health issues was the mistakenly advertised “Babe Chat” position. I’m not anti-sex workers, but it’s not something I feel comfortable doing. I also don’t imagine for one second I’m exactly the kind of person that Loaded TV were hoping to recruit *grins*

I did start checking charity websites and looking at jobs within the Tribunal Service as well as considering applying to be a magistrate. Sadly I don’t meet the health requirements to be a magistrate, and the tribunal service isn’t recruiting until March 2013. Luckily I did spot a vacancy with a mental health charity, working about 10 hours a month, helping with quality assurance work. I applied back in November and was fortunate enough to get a telephone interview in early December. Just before Christmas I got an email inviting me to start training in Spring! I’m pretty darn chuffed, but given the wait before starting and the current economic situation I’m trying not to get my hopes to high – just in case it gets rescinded. 
I’m going to leave the job hunt there for the moment as I have been fortunate enough to find an opportunity that appears to suit my health condition as well as being physically & mentally accessible. I imagine I will have more to add when I have a start date and I find myself needing to deal with the DWP. 

WOW Petition Launch

Today at 8pm the fabulous comedienne, writer and vocal supporter of the disability rights movement Francesca Martinez launched the crowd sourced WOW Petition designed to help resist the ‘War On Welfare’. It is a UK government e-petition which ideally needs to get over 100,000 signatures. It’s going to need publicising and shouting about but I’m sure as a community we can do it. Heck, it’s been live for two and a half hours and it’s already been trending on twitter and received over 1,400 signatures!

It calls for: 

A Cumulative Impact Assessment of all cuts and changes affecting sick & disabled people, their families and carers, and a free vote on repeal of the Welfare Reform Act.
An immediate end to the Work Capability Assessment, as voted for by the British Medical Association.
 

Consultation between the Depts of Health & Education to improve support into work for sick & disabled people, and an end to forced work under threat of sanctions for people on disability benefits.

An Independent, Committee-Based Inquiry into Welfare Reform, covering but not limited to: (1) Care home admission rises, daycare centres, access to education for people with learning difficulties, universal mental health treatments, Remploy closures; (2) DWP media links, the ATOS contract, IT implementation of Universal Credit; (3) Human rights abuses against disabled people, excess claimant deaths & the disregard of medical evidence in decision making by ATOS, DWP & the Tribunal Service.

If you want to sign it click here. Once you have signed it then you will need to remember to check your inbox and click the confirmation email to make it count.

New Report Highlights Failures of Work Capability Assessment

The Spartacus Campaign group has today released the Peoples Review of the Work Capability Assessment (WCA).

The press release sums it all up pretty nice nicley;

New report highlights failures of Work Capability Assessment as Spartacus campaign awaits Harrington’s final review

A new report from the Spartacus campaign today (Monday 12 November) analyses the failures of the Government’s Work Capability Assessment and the Employment & Support Allowance system, which is supposed to support people who are too sick or disabled to work.

It also warns that disabled people are at risk because of the government’s refusal to consider a ‘real world’ test – where part of the test would take into account the real barriers to employment.

The report, ‘The People’s Review of the Work Capability Assessment’, includes examples of people who have been told they are fit for work, including:

Someone with no short term memory mechanism
A man with a terminal brain tumour
An incontinent disabled man who is both blind and deaf

Other examples of claimants’ experiences include a man whose benefits were stopped for failing to return the necessary forms, despite his wife informing the Department for Work and Pensions (DWP) that he was in a coma; and a man who died 48 hours after filling in his questionnaire – after informing everyone of his death his wife received a call 3 months later asking him to come in for his assessment.

Overall the report highlights stories of more than 70 people who have been inappropriately  assessed, forced to go to tribunal, felt humiliated or treated inappropriately. It comes prior to the publication of the final review of the Work Capability Assessment by Professor Harrington, who steps down as advisor to the DWP this month, and whose resignation was announced in July, just days after the broadcast of two TV documentaries exposing the reality of claimants’ experience of the assessment process.

The report also highlights serious concerns about the number of people who have died after being told by the DWP they were ‘fit for work’ or have taken their own lives in circumstances where applying for ESA and going through the WCA appear to be factors in their deaths.

Professor Peter Beresford OBE, professor of social policy at Brunel University and chair of Shaping Our Lives, said:

“The work capability assessment is unreliable and unhelpful, as well as being arbitrary and cruel… No-one – not the doctors who make the assessment decisions, nor Atos which has responsibility for providing assessments, nor the Department of Work and Pensions which commissioned them – takes responsibility for the problems and failures in the system. It’s a perfect storm of irresponsibility and unaccountability.”

The report includes an analysis of the position of a number of professional and regulatory organisations on the WCA, including the British Medical Association, the Royal College of Nursing, the General Medical Council, the National Audit Office and the Citizens Advice Bureau, as well as Government statements and background information on Atos, the company  employed to carry out the assessments.

The report’s author added:

These issues are a matter of survival for people living with illness and disability.  It is unacceptable that in 21st century Britain vulnerable people are being treated so appallingly. We hope The People’s Review will spur the Government into prompt and concrete action on the failures of the WCA. Radical change is needed – and it is needed now. Whilst there has been some acknowledgement of the problems following Professor Harrington‘s previous Reviews, our evidence from those at the sharp end of the process, including of the high rate of successful appeals and the huge backlog of unheard appeals, shows the whole system is still failing badly. The cost to the taxpayer is enormous and the cost to those going through it goes way beyond money.  In the meantime, sick and disabled people continue to be severely affected by what they’ve experienced, and terrified of what the future holds.  

The new report is available from:    http://wearespartacus.org.uk  

For more information contact:         Jane Young  jane@janeyoung.me.uk

The full report lists 14 pages of (often) single paragraph case studies of people who have been failed by the WCA, yet it is just the tip of a gargantuan iceberg. Like all the people here and the thousands of others who’s stories are not in the report I was given 0 points by ATOS and declared fit for work. The DWP then used my poor score on the WCA as it’s key reason to refuse to give me DLA. I spent the first two terrifying years of becoming disabled desperately appealing and going through tribunals with no financial support in the mean time. Here are four statements taken from a page at random in the new report which illustrate how this system has failed and upset other sick and/or disabled people who are clearly not fit to work (quotes come directly from the report & are written in their own words);

  • Detached labrum of the right shoulder(2 ops done so far), degenerative vertabrae in my neck with stenosis (shrinking of the outlet which the nerves to my left arm go thru) reducing sensation and strength, nerve damage to the right shoulder affecting the interior of my right arm, severe depression onset due to injuries and personal circumstances, and 3 types of drugs to keep things in order….their opinion…Nil Points and fit for work.
  • I went to one of these tests and had my benefits stopped plus they sent a letter to my doctors telling him to stop signing me off, i could’ve appealed but would’ve had to travel for 4 hours to get to the court! I felt so bad and had to get some work to survive but this then led to me having a heart attack! I have had to have a pacemaker fitted. They said is was deemed fit to work because in the test i sat on a table and all i did was swing my legs forward and back!!!!! Plus asked to bend over!
  • I suffer with borderline personality dissorder anxiety and depression plus i faint sometimes or have black outs. I am being forced back into work and to go to work meetings. I have been threatend with loosing my home, so i ended up self harming and now being threatend with loosing my benefits. If I don’t get my benifits nothing will get paid, and i’ll either end up topping myself or dying of starvation. I am now terrified, i am not ready to go back to work, and if they force me into work i have no idea how i will react. 1 mintue i can be fine next i feel like the anticrist. I can’t control my personality dissorder, mental illness does not have days off.
  • I have multiple health problems – some of which have taken years to diagnose eg, PTSD, diabetes, chronic fatigue, severe allergies causing angioedema and anaphylactic shock, asthma, gastritis, muscle weakness. I’ve just undergone TWO hysteroscopies and the biopsy has revealed a problem. We’ve discussed hysterectomy so I’m guessing the diagnosis won’t be a good one. I can’t climb stairs and I haven’t been out socially for two decades. My last job was as a temp for the NHS and I was dismissed from my job because I became ill at work and had to be hospitalised with pneumonia. They have now deemed me fir for work despite GP and Consultant’s notes which state the opposite.

If you get a chance have a look at the report, it really is worth a read. You can find a copy at the We are Spartacus webpage or this link should take you to a pdf file.

If you can please try and share this report with local MPs, councillors, journalists and groups that wish to ally themselves with the disabled peoples rights movement.

If you want to write to your MP you can find them on this website; http://www.writetothem.com/

I used this letter, you’d be welcome to do the same and edit it to make it more personal.

Dear [insert MPs name],

Today see’s the release of a report put together by disabled people and their allies to try and show the harsh realities of the Work Capability Assessment (WCA) preformed by ATOS healthcare on behalf of the DWP to judge whether those claiming ESA are in actuality fit to work. It is so riddled with errors that all independent reviews say it isn’t fit for purpose (unless that purpose is finding severely sick & disabled people incorrectly fit for work of course).

You can find the report here; http://wearespartacus.org.uk/wca-peoples-review/ and I will paste the press release at the bottom of this email to give you a quick synopsis.

[Insert personal experience/story here if you feel comfortable doing so]

Warm Regards,

[Your name here]

—–

Press Release

[Copy & Paste Press Release here]

Where Have You Been?

I’ve been rather absent from the world over the last month because life has gotten in the way of activism which in some ways is a shame but mostly it’s to be expected from time to time. Preparing to move house and health issues have eaten up my time and energy. Even with that going on there have been a couple of high points so  I thought I’d post an update.

ESA


I thought I’d start on a positive note. I’ve had some great news, I appealed a DWP decision to place me in the WRAG (Work Related Activity Group) for ESA (Employment Support Allowance) on the basis I am virtually unable to walk (or unable to walk without severe pain & discomfort). I sent in a letter quoting the criteria for the support group I believed I met, told them exactly which doctors letter confirmed it and waited to hear if it would be enough. It turns out it was! Now I’m in the support group and able to do as much voluntary work as I can manage. 


To me it doesn’t feel any different to being the the WRAG if I’m honest. My local Igneus branch (the company paid by the DWP to get sick/disabled people into work) didn’t think I stood a chance in hell of being employed when I was in the WRAG so they just left me alone to carry on doing little bits of voluntary work here and there. I am well aware some other people are not as fortunate.

Health


My personal health has not taken any dramatic turns for the worse over the last month but I have been caught in a rather naff flare up. 


For those not familiar with the term, a flare up is pretty common when you have a chronic condition. They happen when something causes the condition to get really bad for a few days or sometimes weeks. It’s not that the condition has taken a turn for the worse, it’s just that it goes through a bad patch. After a flare up it’s common to feel ‘set back’. A week in bed or a few days of not eating can leave you feeling weaker than before. A mental health flare up can leave you feeling rather rattled or exhausted for a while afterwards. 


In my case I had a pretty nasty infection for over a week then as I was recovering my bowel became twisted which has caused a lot of pain and discomfort. I’m used to having a twisted bowel, it happens at least twice a month and usually resolves within 8 hours of the pain getting to that unbearable point. Unfortunately this episode has been going on for 4 days now and is wearing me (and my Oramorph supply) down. Luckily the twisting seems to have only partially blocked it so far so I’m not going into hospital but I’m still in a lot of pain with it.


As a result I’ve spent the last 3 weeks in rather ill health which has really negatively impacted on my ability to do much more than moan about how unwell I feel. 

Netroots UK


I went to Netroots UK at the end of June to try and get some ideas for my activism. I was lucky enough to meet a bunch of wonderful Welfare Warriors and to have a chance to chat to some other people I’ve admired for quite some time. 

I left feeling inspired to keep pushing my local and political work as well as assisting with national campaigns where I can. I’ve spoken to a few people about getting involved in some exciting projects once I’ve finished moving house, if any of them get off the ground I’ll keep you posted.


Moving

I’m still moving house which is taking longer than initially expected because of my bout of extra-ill health and the house needing a bit more work than we originally thought it would. Still, we have done a lot of work and it’s paying off. It all looks far better now and should only get better as we continue. I’m very excited about getting in now, luckily it should only mean waiting 3 weeks now!

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