About a year ago, I was at a bus stop when I happened to bump into a friend. I was delighted to see him out and about; some months earlier, he had experienced a disastrous stroke which had left him unable to speak and paralysed throughout one side of his body. Despite this, my friend had painstakingly taught himself to speak, move and walk again, pretty much through a combination sheer bloody-mindedness and family support. The bus arrived, and I noticed that my friend was a little unsteady when boarding, but it was only when we had sat down and he began to tell me what his life was like that I fully appreciated just how profoundly he was still affected by the stroke. It wasn’t just the slight hesitation as he chased words around before pinning them down; nor the slow, frustrating the progress he described with re-gaining fine motor skills such as turning a key in a lock or picking up a coin from a tabletop; or the massive memory lapses he disclosed. It wasn’t even that my previously jovial friend now said that he was having flash-backs to being in hospital and thought often about killing himself. It was the fact that he shouted all these facts in public, completely unaware of the shocked reactions of a bus-load of people.
My friend also told me that he had money troubles. He was self-employed, and although his wife had tried her best to keep the business going while he had been in hospital and undergoing rehabilitation, things were slipping. He had been summoned to attend a Work Capability Assessment. His wife had had to take him there; while short, familiar journeys were one thing, he needed support to go somewhere new and sometimes forgot why he was supposed to be going somewhere. When he arrived, he had difficulties negotiating the stairs. He needed the toilet – his continence had also been affected by the stroke – but was told there were no facilities for public use. At this assessment, my friend was found fit for work.
My friend is a classic example of someone who can be seen to be walking and talking, and whose behaviour could appear superficially “normal”, but who has ongoing hidden problems (in his case, both neurological and psychiatric) whose severity fluctuates – precisely the sort of person the benefits system has great deal in difficulty coping with. I have been lucky; so far I have not had to be subjected to a WCA, although if I can’t return to work before my sick pay runs out, that may change. Looking at the questions for “mental, cognitive and intellectual functions” on the Jobcentre Plus’s Limited Capability for Work Questionnaire for Employment Support Allowance claimants (which you can see here), I would have to answer “it varies” to almost every question. Can I “initiate actions” and carry out plans such as getting washed, dressed, going outside? Sometimes. Can I cope with change to my daily routine? It depends. Can I cope with social situations or communicate with strangers? Ask me another day. The question on “keeping yourself safe” appears focussed on the claimant’s ability to protect themselves from hazards (e.g. can they cook safely?) but makes no mention of those whose biggest risk is from self-harm or suicide. The question about whether a claimant can “behave appropriately with others” is downright bizarre. “How often do you behave in a way which upsets other people? For example, this might be because you are aggressive or act in an unusual way.” Never mind the fact that many people who behave “inappropriately” do so because their intellectual disability or mental health problem causes them to lack awareness of what is appropriate, or the fact that many people get upset when service users “act in an unusual way” because they are prejudiced or ignorant.
The actual WCA involves a worker from the private company ATOS asking the claimant to answer certain questions and perform a number of tasks. Points are assigned to each response and the claimant must score 15 points overall to qualify for ESA instead of being categorised as a “jobseeker”. Looking at the assessment descriptors, it becomes clear that some of the aspects of the Limited Capability for Work Questionnaire that one might have thought would apply to some mental health conditions are in fact very narrowly applied only to physical difficulties. For example, a claimant can only score points in the section on understanding if they have a sensory impairment. Someone unable to comprehend a message due to psychosis of intellectual disability would score zero points on this section.
The descriptors which are intended to apply specifically to mental health conditions show very little appreciation of the complexity of many illnesses. For example, to score even the minimum points for coping with social engagement due to cognitive impairment or mental disorder, the claimant has to demonstrate that, “engagement in social contact with someone unfamiliar to the claimant is not possible for the majority of the time due to difficulty relating to others or significant distress experienced by the individual.” Well, what about people who can manage “social engagement” one day, but not the next? Those whose conditions fluctuate, or worsen when exposed to a trigger, perhaps with very little warning for the sufferer? What about people who can “engage in social contact” more often than not, but whose illness, when it flares up, is so acute that being in the workplace would be disastrous? All of this is why the Citizen’s Advice Bureau stated as long ago as March 2010 that the WCA system fails claimants, especially ones with mental health difficulties. Mind has expressed concern about claimants being assessed by people with little or no training in the area of mental health, and conducted a survey among benefits claimants which found very high levels of anxiety (89%) that people would be forced back to work before they were ready.
One of the concerns that the CAB raised was that the WCA takes no account of the context of any potential work. What does it actually mean to judge someone with mental health difficulties to be “fit for work”? For what work might they fit? As Bipolar Bear notes in a recent blog post, increasingly governments and welfare agencies buy into a simplistic notion about that “work fixes everything. Any work, it would seem. Whatever’s available. Former accountant suffering from a stress burnout? There’s a job going at McDonalds – off you go. Would you like to upsize your dignity for $1?”
All of this is bubbling around in my brain because I am trying to decide when and how to go back to work. The longer I am off, the more I worry about my employer’s view of me, and the worse things are financially. In some senses, I could now be considered “fit for work”, some of the time. If my fitness were assessed on the basis of my functioning today, I would definitely be placed in the Jobseeker category. Right now, I could probably just about to get up and ready and get to work on time (and hey, let’s face it, this was never the strongest part of my skill-set when I was perfectly well). I could interact with colleagues, show genuine interest in their weekends and their children, enjoy grabbing lunch together. In fact, I would go so far as to say that this aspect of work would be therapeutic. Unless in the depths of depression with its accompanying social withdrawal, I am a gregarious person and I’ve never enjoyed being at home alone all day. When I was an at-home mother, being away from the work environment definitely contributed to the depression I experienced.
And yet, on a different day of a different week, I’m clearly not well enough to work. There are still periods of depression and despair, during which it’s hard to even leave the house. There have been weeks in the recent past where I have only gone out if I absolutely have to – for example to attend an appointment with my Consultant – and have cried all the way there on public transport, all the way through the appointment, and then all the way home again. I struggle to find any specific trigger for these sudden drops or improvements in my mood. Even when feeling quite well I still can’t sleep without taking anti-psychotics, and I’ve been started on yet another new medication this week which already appears to me making me drowsy. But beyond the question of whether I can turn up somewhere and be workplace appropriate is the issue of whether I am, as yet, I fit for my work? I am very mindful of the fact that work was the major trigger in this current episode. A first management position in a target-driven public sector organisation, overwork, stress and the belief that I was indispensible all contributed to this first sign – a mild hypomania (not that I recognised it as such) where I felt that I was aware of the stress, but surfing the wave of work and doing it brilliantly. The hours I was working didn’t matter, because I was excited by what I was doing, and felt that I was tremendously good at it. In my spare time I trained for and ran a 10k race for charity, and my social life was better than ever. I found it hard to believe I had ever suffered depression, and had the idea that I might write a book on how to escape from depression by being just like me (yes, I am now embarrassed by that grandiosity, thanks). I then had a mood crash, followed by months of cycling back and forth, but all the time I kept working, feeling more and more anxious about the demands on me.
When I do return to work, I will no longer be in management, but back on the frontline. This will reduce some of the stress, but I remain concerned about my ability to do the basic job. Like many other public sector roles, mine is one where the stakes are high. The decisions I take can have major consequences for other people’s lives, and I have a responsibility to offer clients a calm, supportive, boundaried, response to their personal difficulties. Although there is a considerable amount of desk-based report writing and file updating (far too much, in many people’s opinion), the heart of my profession is about me, in a room, with a client, discussing their issues. Sometimes, those issues are huge. On any given day, I know that I could have to deal with people who are aggressive, despairing, terrified, frustrated; who have been made homeless, who are genuinely penniless, who have serious problem with drugs or alcohol, who hate me without knowing me because I represent “the system”. So far, I don’t yet have my own emotions under control. I have lost the ability to keep my sense of self separate from the suffering of others. The news distresses me to the point where I avoid it, and dramas that show a great deal of suffering or violence can trigger a panic attack. So my Consultant, GP and I have concluded that I am not yet strong enough to do my job. Thank God that, as yet, that decision is not made by a stranger with a checklist.
I too dread the day this comes. ATOS is an organisation that, if I didn’t know better, could have been invented by the Daily Smell. I can see many people ending up back in hospital as a result of this stupid organisation applying stupid rules.
Waiting for the inevitable day when my services will be too erratic to be required. Waiting to see what ATOS will come up with then, when assessing 2 conditions well known for their stability – bipolar & MS. I’ll test mattresses. One at a time. For several months each. Don’t worry about providing food or a shower. Just something sharp.
Hope you are never in that position, but what I have learned is if you ever are, make sure you get yourself an advocate who can help you present your case. My partner has just suggested that I get an advocate of some sort to take to return to work meetings, maybe he is right….
I dare’nt even look at ESA as an option. I know that some days I am not ready to be working yet – damn leaving the house unless I have to is not even a choice – I just wont do it! But I want and need the financially security of work, sure I could have stayed where I was, but the stigma & discrimination (even if only from a single source) was just putting my anxiety levels through the roof. I couldn’t get DLA as my GP told them I ‘want’ but don’t ‘need’ the help stated in my claim and I know I wouldn’t score 15 points on the ESA tests (unless I put my hip out again by doing the splits the night before – might pull in some physical scoring then, but that would be cheating!). So as it stands I am entitled to nowt, zip, zilch, zero so regardless of capability, motivation or wellness another job is the only option for me
I really do think the key to dealing with these Atos assessments is preparing and more importantly – getting someone who knows that system and how to translate it for mental health to go alongside with you – Not a GP or a anyone in statutory services but preferebly from the Third Sector.
I had my assessment from ATOS and it wasnt as bad as all the hype suggested, yes it was an ordeal but i had a support worker with me and this seemed to go down well, the support worker knew the system and knew how to get things across and they also knew me very well, he was a worker from a local Mind association and had good knowledge of the ESA/ATOS system. I would recommend to anyone to take someone like that with them.
i was in managment before becoming ill but wouldnt see it as losing my dignity to take even a basic minimum wage job of a completely different type now.
I believe that just to move forward to be in any basic type of work again when i am ready would be a massive positive thing. I could then gradually build on that.
i am currently volunteering to build up my stamina and routine, and to find out what i Can build up to doing. This is slow but sure.
i can totally relate to the “it varies” thing. and any slight pressure then im on the floor but slowly this is changing as i have found a very understanding volunteer placment in a mental health charity.
Our first assessment with a lovely lady from ATOS involved the whole interview focusing on physical health questions and a quick gloss over mental health at the very end. One question we categorically answered ‘no, can’t do’ which returned on the transcript as ‘yes, fine’. Most of the answers actually didn’t seem to require our participation or opinion. Funny enough we appealed and won. Next guy actually focused on mental health and seemed rather more clued up. No need to appeal. Hmm. 😉
Hi there, that doesn’t surprise me… my mum is an advicate working with a range of people including those with learning disabilities and mental health conditions. She is adamant that people should prepare for the assessment with an advocate who knows the system and how to present the information so ATOS staff are more likely to write the correct stuff down. Otherwise it can be a lottery as to who you see, and appealing is just an extra layer of stress. Glad you got it sorted in the end!
As discussed, here are the links I found useful for completing my Limited Capability for Work Questionnaire.
At http://www.whatdotheyknow.com/request/atos_healthcare_evidence_based_p you can find a copy of the ‘Atos Healthcare Evidence Based Protocols for the Disability Analyst’ ie the protocols that Atos use for making an assessment.
At http://www.dwp.gov.uk/docs/wca-handbook.pdf you can view the complete WCA handbook (be warned this is 184 pages long and although a lot of it is not relevant, there are things to note not just when completing the form but also at the assessment. You will see that for certain conditions, the assessor is advised to observe the claimant including how they enter the building, how they sit, walk and even answer questions.
As part of this, it is worth noting that despite some mental health conditions effecting things that fall into the physical health category, they are not scored. For example, section 1 of the Limited Capability for Work Questionnaire relates to getting about, asking you if you can move 50 or 200 yards. Despite the fact that someone suffering from an anxiety disorder or similar may not be able to do this in a busy environment that they do not know, no marks are allocated for this scenario.
Likewise, section 7 of the form relates to understanding people communicating with you. Although people suffering from certain mental illnesses might struggle to understand what is being conveyed to them due to anxiety, stress, depression or a number of other things, the WCA assessment ONLY considers people who have vision or hearing problems.
At http://www.legislation.gov.uk/uksi/2011/228/schedule/1/made?view=plain and http://www.legislation.gov.uk/uksi/2011/228/schedule/2/made?view=plain you can view a summary of how marks are allocated in each section of the assessment.
At http://www.consumeractiongroup.co.uk/forum/showthread.php?316210-ESA50-Guide you can view a guide on completing the first part of the Limited Capability for Work Questionnaire. Although this only refers to the physical section of the form, it does give an idea on how to complete the form in general. Hopefully at some point soon, there will be a guide for the second part of this form. I believe you need to register on the Consumer Action Group forum to download this form but this is free and to be honest can be quite useful for other money matters you might have. If you want, you could even register, download the form and then close your account.
http://www.direct.gov.uk/en/MoneyTaxAndBenefits/BenefitsTaxCreditsAndOtherSupport/Illorinjured/DG_172012 you can download a pdf version of the Limited Capability for Work Questionnaire. This version allows you to save it as you go along so that you can easily make changes and amendments not to mention check and re-check everything you have written. It is also useful as it gives you an easy way to save a copy of the completed form for your records.
With regards to completing the form, if possible, try and speak to someone who knows and deals with the forms on a regular basis. In my case, the Advocacy Support worker at my local branch of Mind was invaluable. There are a few points that are extremely important to remember when completing the questionnaire. These are:
– if you are completing the form by hand, write it out in rough on paper or your computer so you can word it right and can ensure that you include everything before completing the final version.
– when completing the form, whenever possible, try and use the words or phrases used in the official documents if they apply to you. It is easier for an assessor or Judge to grant you marks if your phrases match the ones in the published guidelines.
– treat the person reading the form as an idiot. Imagine that they know NOTHING at all about you or your condition. Don’t just tell them that you suffer from depression / bipolar / anxiety or whatever, tell them exactly what this illness entails. Remember that one person’s depression is completely different to another persons’. Explain in as much detail as possible what this illness is to you and the effects it has on your everyday life. Explain what support or care needs you have and if they vary cover all eventualities.
– and a “why” to every question that you answer. If you say that you will need someone with you at an assessment explain why that is ie: “at an assessment I would need someone with me who knows me and knows about my condition to prevent me from suffering a panic attack and to make sure that I fully understood the questions being asked of me and to ensure that I would include all relevant details in my answers” would be an example of the type of information that you should include.
– make sure that you cover EVERY detail even if you think it is unimportant. It is up to the assessor to decide if it is important or not.
– for every question, answer it as if it was a location you know and then one that you don’t ie “I can walk 200 yards in a place that I know well at a quiet time but in a location I do not know, I would need someone with me …[explain why you need that person]”.
– for every question, make sure you tell them about your worst times as well as your current state ie: “when I am suffering from a bad depressive episode I need someone with me to prevent me from harming myself. I have a bad depressive episode every 2-3 weeks and they usually last 3-4 days”.
– answer every question that might relate to you in any way. Remember the physical questions might really relate to people with physical disabilities but if you do have problems walking 200 yards in unfamiliar places tell them. Let the assessor decide if they want to award you points for that or not.
– answer questions that you know you will not be scored points for. Let the assessor see how your illness effects every part of your life (if it does) and you never know when the scoring criteria might change between you completing the form and it being assessed.
– make sure you make a copy of your completed application so that you and anyone with you can refer to it should you be called for a medical assessment or have to go to a Tribunal.
– send your completed questionnaire recorded delivery. That way, should the worst happen and your form goes missing in the post, you can prove that you have sent it and will hopefully have less issues with regards to having your benefits stopped for not completing the form.
– finally and most importantly of all, after you have checked and re-checked your form, get someone else to check it for you. Something that makes perfect sense to you when you are writing it out might not make any sense at all to someone else. This person does not need to know you or anything about your condition (in fact that is even better). The important thing is that they can ensure that your form makes sense.
Good luck to anyone about to complete the questionnaire or attend an assessment or Tribunal.
I’m a benefits advisor, but even I am terrified of Atos assessments. I’ve been doing them as a claimant for almost 7 years and they are definitely getting worse. It’s the unpredictability that’s the worst. Having an advocate is no guarantee of success or support. You can end up being penalised for having one speak for you if the assessor doesn’t like it. But then if you don’t have one, the assessor can bully you for the entire session.
I’ve had such a severe panic attack at an Atos assessment that I was sick and had to be sent home in a taxi by the receptionist after sobbing and retching for nearly an hour in the waiting room and still needed to appeal. I’ve also had ones where I’ve barely been able to speak due to the fear and passed first go. The assessors seemed to enjoy my discomfort and frankly, all the advocates in the world can’t do much about that, only changes from the DWP and Atos to control their appalling staff and make them act professionally. And Hari, I don’t like your insistence that it’s the sick and disabled who need to change when the whole point is that we aren’t doing anything wrong…
I’m pleased you wrote about this, Charlotte, although I really hope you don’t need to go through the assessment process yourself.
I’m one of the people waiting in dread and fear for ‘that’ envelope on my doormat. Mental health claimants face so many ‘catch 22’ problems in the benefit system. We need to use research, problem solving and communication skills to fill in the forms when one of the reasons we are claiming is that we are too unwell to reliably use those skills. If we are too unwell to attend our assessment we lose our benefit, but if we are able to turn up and articulate our problems then we are ‘obviously’ fit for work. We have to persuade strangers to believe in problems which our own self stigma often prevents us from believing ourselves.
Agencies who would assist and advocate for us are losing funding, most of us know that there is very little support available to us and this situation is only going to get worse.
I hate to sound so negative but the system is a lottery at best and I am preparing for the worst.
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