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Warning: questionnaires may damage your health
Posted Thursday 1 September 2011
In this guest blog, Lee describes his experience of being re-assessed for the new Employment and Support Allowance.
As part of the DWP’s attempt to migrate all those still receiving Incapacity Benefit on to their new system of Employment and Support Allowance, I was recently issued with a 20-page ‘Limited capability for work questionnaire’ – which I can only describe as an interrogation on paper.
How does this make me feel? Well, anyone with a mental health condition can probably guess; stressed, anxious, frustrated and resentful.
The problem I find with this kind of bureaucracy is that you have to provide a lot of VERY personal information and this alone can be a very disturbing prospect. A great deal of mental preparation was necessary and I had to find a moment where I was lucid and my concentration wouldn’t be hampered by any of the myriad symptoms of my condition.
It doesn’t help that I found the questions were vague and generalised and often difficult to understand. I couldn’t afford to miss a trick and I needed to ensure I was as detailed and accurate in my answers as possible and to be honest, it was exhausting.
The reason I found it exhausting was because I had to think long and hard about how my condition affects me, which at times was a difficult and painful experience. It’s like being asked to evoke bad memories of a personal trauma – attempting to articulate how your condition manifests itself and how it can impact a multitude of aspects so the DWP can decide how it affects your ability to hold down a job.
Among the different sections of the questionnaire I had to explain how my condition makes it difficult for me to communicate with others; whether or not it creates difficulties in learning to do tasks, how difficult I find it to wake up, wash and dress myself, cook and go shopping.
The problem I found with this was that they were asking me to give a definitive answer about something that is so variable and fluctuating – trying to do so is almost impossible without a lot of self-analysis. Some of it is very basic stuff but it left me wondering why it was relevant at all. Yes, I can wash myself, tie my own shoelaces and even microwave a carbonara – but this doesn’t mean I could necessarily hold down a job.
Later on they ask me how well I cope with change, getting out and about and, of course, social situations. I’m still trying to learn how to manage things on a daily basis, let alone maintain any kind of routine, trying to explain the varying degrees at which I can cope with change and at what point it becomes a problem – there simply isn’t enough room to go into the depth required to give even a vaguely accurate response. I felt the best thing to do was explain how sometimes the slightest change in my daily life can actually have dramatic consequences.
I find social situations and being outdoors can often trigger anxiety, which usually manifests itself in agoraphobia and voluntary isolation. Conversely, I like the opportunity to get out now and again and be among other human beings and in my more adventurous moments I’m as up for a night out on the town as anyone else. But how do you explain this with such rigid criteria and the draconian values institutionally inherent in the present system? The mentality of “if you’re not laid-up in bed, then you must be OK to go to work”.
My ability to be a fully functioning, socially acceptable individual couldn’t be more questionable, especially if I have a habit of upsetting people. I can understand why they need to know how I interact with others; if I can’t sustain positive relationships with people with any kind of longevity then how am I supposed to have a job which (for the most part) usually involves working with other people?
So I may have some interpersonal issues that need addressing; maybe I’m highly stressed at the moment and not getting the support I need. Maybe I’m deeply frustrated by all the things going on in my life; or maybe it’s because I have bipolar disorder. It’s a can of worms, and no way was the box in which they required me to respond big enough to explain how my friends and family are worried about me.
I doubt I am the only one with a lot of concerns for their future in respect of this new system. I still don’t fully understand how it will affect me in the future. I would like to return to university soon and under the previous system of Incapacity Benefit, I was allowed to continue to receive benefits during my short stint at university. The extra financial leverage was undeniably helpful and made a massive difference to my quality of life; however, six months later I was forced to drop out due to a relapse.
My fear now is that this option may no longer be available and with the cost of living rising so dramatically in recent months, it’s becoming harder and harder to manage on such a low income, particularly when there are fewer options and greater limitations due to these so-called welfare reforms.
Lee
Read our information on where you can find help for benefits advice. There is also information for on the Employment Support Allowance and the Work Capability Assessment.
17 Comments
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I have every sympathy with Lee. My son fell apart so badly during this time, that I became his representative.I contacted the DWP and socked it to them.My MP swung into action with various ministers .From zero points my son was soon found to score plenty, and his ESA was restored...but not before (WITHIN 24 hours), all benefits had been removed...which resulted in weeks of depression and no income.The whole process is a total disgrace, and especially to people who already have such burdens to bear.
PLEASE NOTE...there is an over riding statement that can be made in this assessment, which overrides all the other crap ..if working is likely to make you significantly more ill and less able to cope...there is a statement somewhere in the middle that you need to tick or have ticked for you...insist!!. I found it and starred and ticked it among much else I said about what I thought of this indescribably cruel regime of assessment. I am still fighting for you all.I know some of you are too distraught to fight for yourself.So would I be, xxx -
I just wanted to echo Lee's experience, I too had to fill out this form and found it challenging. Not because any of the questions are 'difficult' as such, but because like Lee my condition varies from hour to hour, day to day, week to week.
I became extrememly ill in February of this year, before this I worked full time and have never been on or applied for benefits before. I have to say I have found the whole process extremely confusing and stressful, causing worsening of my depressive symptoms. I also feel under pressure to return to work, by my employer.....'you've been off since February, and should be better by now' sort of thing, and financially.At a time when you need support and understanding it sometimes seems that there is little around.
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I agree with Lee. My own view is that the forms are at best daunting, at worst (for someone with Complex PTSD) terrifying, invoking bad thoughts and triggering flashbacks. At the time when I had to complete my form I was in a very bad/dark place and through a mental health charity (Hafal) I was accompanied to Citizens Advice where an expert on such matters completed my forms for me. My application was successful BUT the monies where withheld for 13 weeks pending a Medical Assessment. This was a horrible experience. Telling a stranger, who is not on my medical team, about the causes of my condition, the symptoms and impact on my life was very distressing and painful. As a person who builds up barriers and isolates herself for self-preservation and protection, revealing those most intimate details made me very sick for days and I cried all the way home.
I really do think that the DWAP need to rethink their approach for people with poor mental health.
My benefits are set (I believe) until 2012. I am very very nervous about how things will go for me when my benefits need to be reviewed/renewed as I am still not able to work. I have tried voluntary work (one half day a week) and only managed two days. I have the Local Job Centre contacting me every couple of months checking on what I am doing to help myself get back in to work. So I feel I am being "got at" from two directions. To the DWAP and Job Centre ~ Please............. just leave me in peace to get through this condition and out the other side. I really DO want to be well enough to work again one day, but your beaurocracy, attitudes and interrogations set me back and destroy what little progress I have made in the preceding weeks/months.
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I really liked reading Lee's article and I do have every sympathy with Lee. I had to fill out the "dreaded" questionnaire twice. The first time was when I was really ill and I remember really stressing out about having to fill it in and I was constantly asking my dad what he would suggest for a number of the questions I was being asked, It caused a great deal of anxiety to the point where my hands were physically shaking and I couldn't keep the pen steady. I was then told in the report of the actual medical assessment that I was just "a little upset about being in social situations on his own" let's just say things worked out my way in the end. So I do find these assessments to be impersonal and really don't look to be making things easier for the people who have to go through them from what I've heared and experienced.
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@Lesley, thanks for sharing your story here - I'm really sorry to read that you're not getting the support and understanding you need. Are you being supported by Occupational Health, your local Mind or Citizen's Advice Burearu? There is some information here on where you can get help: http://www.mind.org.uk/campaigns_and_issues/policy_and_issues/making_benefits_fairer-welfare_reform/where_you_can_find_help There is also information on our Time to Change website about returning to work and getting the support you need: http://www.time-to-change.org.uk/need-support/support-workplace Finally, your employer might benefit from reading this info: http://www.time-to-change.org.uk/need-support/helping-employees-return-to-work Take care, Taryn from Mind
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Thanks for the response. Its good to read the other responses and know that other people have experienced similar things. I will have a look at the links you posted.
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My mum has crippling depression and anxiety to the point where a bath seems like a big task or a trip to the supermarket leaves her shaking and flushed with anxiety. she cant even eat properly the moment as she gets anxious of choking and is she is exhausted most of the day. im practically her carer. She is worried sick as her atos medical is due next week and after reading about other similar people suffering from mental health issues are being found fit for work she is very anxious she would love to work and feel better but there is no way she could hold down a job. I think its so unfair these medicals are so focused on physical symtoms they have no empathy for how debilatating depression can be.
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Found this page sort of randomly, and empathise so much with the post and comments as I worked as a mental nursing auxiliary some years ago.
I read somewhere that ATOS and others get paid for removing you from the incapacitated list. Is this true? If so, it's a tragic and callous way to go about assessing people.
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@Laura, I;m so sorry to hear about your mum. Do read our info on where you can find help and the process - http://www.mind.org.uk/campaigns_and_issues/policy_and_issues/making_benefits_fairer-welfare_reform/where_you_can_find_help - Your local Mind or Citizen's Advice Bureau may be able to offer some support. Take care, Taryn from Mind
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I feel so strongly at how people are being treated now. I volunteer at the CAB and I have a special empathy with those trapped in the benefits minefield, particularly those with mental health problems. To all you bloggers and others just beleive there are many out there who truly care even if it doesn't feel like it. I have yet to meet one person who would agree with the way Lee and others are treated by the system.
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Thank you Taryn - looking forward to checking out Judy Stenger's stuff. I'm starting to feel like a regular at the game of: maximum time on esa, fail medical because I can't tell others about things that disgust me about myself, appeal, fail tribunal for same reason and get belittled in the process, faff about on jsa for 6 months 'til I can go back on esa, when time's up fail another medical, appeal again... Hopefully Judy can help me off the roundabout. (I have to write another appeal letter after I read her stuff.)
Thanks again
Dawn -
I suffer with bipolar, im in depths of despair at moment,pressure from atos on phone.have medical 22nd september. this is pushing me over edge, to be judged and personally violated by a pretend doctor and rake everything up i cant go through with it.im under cpn and physciatrist, have been for longtime.and had plenty help from crisis team.i cant see a way forward,i feel trapped and alone.i ranted at woman on phone,i wanted to crawl in big hole and never be found,im a mam and this is tearing my family apart, my head just spinning wildly.
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I am sorry you guys have had problems with Benefits, I have too. I was getting ESA until I had an Atos medical in March this year and the doctor declared my benefit should stop. I now have the stress of a tribunal, ahead. I have got a GPs letter and am getting another letter from a mental health place I attend to support my case. When I read the documents, I feel upset, because it affirms to me my mental health problems, there is no let up. I want to work, but its really hard, and it has caused me stress and depression. Now when people see me walking round during the day, (I am only 39, I get the continual are you working..... which only makes me feel worse...) I wish I could be left alone, free of damn questions, to recuperate in private......
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I have just had my forms to fill in and had my assesmentinterview i suffer with depression and anxiety (panic attacks) . Two days ago I had a phone call to say i was being put on income support and my incapacity benefit was stopping due to my assesment. I broke down on the phone and was told I could Appeal if i didnt agree with it but that could take months i spent the day in shear panic and termiol and fear of my future. Why didnt they see it or believe me I wish this illness had a big mark that showed up on your forhead as proof you have it. I now feel ihave been chucked to one side and noone cares or believes me about how i feel inside, not to mention the stresses of debt now because i have had my money stopped. My partner was diagniose with terminal cancer two weeks before xmas and i really cant cope with life anymore. I have 2 children that i feel i havent been a real mum to for year because of my illness and i just want to be a mum again. They have knocked me right back to square one with this decision . I am seeing a lady today from the mental health team who is going to help me appeal but really whats the piont? wish i wasnt in this nightmare.x
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Dear Maggie, I’m so sorry to read that you feel like you are in the depths of despair. I really hope you can reach out to some family or friends in this difficult time, if you can’t do remember the Samaritans are there to listen 24/7 on 08457 90 90 90 or jo@samaritans.org
Please do contact your local Mind (http://www.mind.org.uk/help/mind_in_your_area) or Citizens Advice Bureau (http://www.citizensadvice.org.uk/) who may be able to help you through this process. Our infoline can also help you find support in your area: 0300 123 3393 / info@mind.org.uk
Take care, Taryn from Mind -
I had PTSD, was in counselling and showing signs of undiagnosed depression. I scored zero points. Two days after my interview with these people (after the form was filled in they interviewed me) I was admitted to hospital with psychosis. In my appeal letter I mentioned how the timing of my psychosis had to be at least partly linked to the stress of the interview I had had two days previous. Anyone in a similar situation should get their friends, family and mental health team to do this paperwork with them.
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I too went through the horror of ATOS doctor and the strange medical etc. she sat pan faced and just ticked through the form, had me doing bending exercises, when she came to doing BP it was so high she was shocked! I felt humiliated and lost, then I got a phone call saying I will have to go through it all again in December...sick to death of all of it. felt much worse afterwards and totally worthless. I cannot believe what they are doing to us....if we are medically retired...does that not mean WE ARE NOT WELL...??? My sympathy to everyone, this is disgusting, any old thing to save money! Get onto those who have never worked, those who have no intentions of ever working...surely that would save a lot more? Totally fed up..it made me feel so upset, why treat us this way?
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