Monday, 11 June 2012

Jumping Through Hoops

This post is a copy of a letter I've just written to the Department for Work and Pensions, as the latest part of the jumping-through-hoops process called Applying for (and Keeping) Employment and Support Allowance. I may shorten and edit the letter further before sending it, as it is long. It is not a happy post, and does not make cheerful reading.

I've shared it here on my blog, however, because it feels important to do so at a time when disabled people in Britain are being blamed for the budget deficit and, in effect, disbelieved for being ill. By the government and by newspapers, they are labelled as workshy scroungers. In reality, many chronically ill people are being made more sick through the prolonged stress and anxiety of rejected applications, humiliating medical assessments, nerve-wracking tribunal hearings and more. In my case, even having had my appeal successfully heard by a tribunal is proving to be far from the end of the story. I am fed up, depressed and very angry. And yet there are others who need their benefits even more than I do, who are suffering more than I am. This awful situation has already led to many becoming homeless and at least one preventable death.

ESA is a hideously complicated benefit, and to clarify the bit near the beginning re the two components: the reason I'm asking to be considered for the support component of ESA, is that if I'm on the work component alone I will not get any more money after January 2013. If I'm placed on both components, there's a chance (although this is not guaranteed) that my payments will continue.

If, before, after or instead of reading this, you would sign the following Avaaz petition, I will consider this posting well worth it.

Many thanks.

11 June 2012

To whom it may concern

My partner spoke to one of your advisors on the telephone on 8 June 2012, to discuss why I have not been placed in the support component group of Employment and Support Allowance. A tribunal I attended last month allowed my appeal against your earlier decision that I was not eligible for ESA, but they said only that I was eligible for the work component. The advisor last Friday explained that I would be considered for the support component as well, if I submitted evidence that my mental ill health (anxiety and occasional depression) also affect my ability to work, and not just my chronic pain condition.

I am therefore writing to you to explain more about my anxiety and how it affects me. You will also be receiving letters from my partner, my GP and my counsellor on this issue shortly.

As far as I’m concerned, my chronic pain condition (neuropathic pain) is already severely disabling, in that it affects my ability to sit upright, stand or walk for more than short periods. I believe (and the tribunal evidently agreed with me) that I would be unable to hold down a job, considering these disabilities. However, my anxiety is also a major issue and would greatly impair my ability to cope with a job, especially as it is often triggered by flare-ups of pain. I would like first to explain something once more about how my chronic pain affects me, because this is often a cause of great anxiety for me.

One of the main difficulties I would have in a work situation, would be pacing my activities so as to avoid these major distressing flare-ups of pain. At home I have to pace myself constantly in order to avoid these flare-ups, which can be incapacitating and cause great distress, often triggering anxiety or low mood.

Pacing myself involves regular and frequent rests after any activity that involves sitting, standing or walking. This would be extremely difficult if not impossible in a work setting, and from long experience I believe that flare-ups would be frequent and inevitable. I would therefore need to take time off sick on a frequent basis. Flare-ups can sometimes last for weeks or months, which would obviously be impractical if I was working.

With regard to sitting times, I can usually sit comfortably for no more than fifteen minutes, not thirty minutes as stated in the assessment. I can usually stand for only a few minutes without rapidly increasing pain. During flare-ups, sitting for only a few minutes can be very painful, and standing is correspondingly more difficult too. The need to pace myself by sticking to sitting and standing is therefore essential for me to avoid such flare-ups.

In order to attend the tribunal in Brighton, my partner had to recline the passenger seat of the car for me, so that the journey of nearly an hour would not trigger a pain flare-up. We do this for all car journeys of longer than fifteen minutes. Similarly, during the tribunal hearing I had to lie on a sun lounger we had brought with us, as there was naturally no reclining furniture available in the hearing room. Wherever I go, I take a couple of cushions with me, so that I can be as comfortable as possible and if necessary lie down in order to prevent and increase of pain.

Other activities also trigger more pain, such as reaching repeatedly for things, or lifting and carrying. These activities are correspondingly more difficult if I’m in a pain flare-up. I can also get pain in my hands from using a keyboard repeatedly or over long periods. In the past I was given redundancy from my job because I had developed a repetitive strain injury in my hands from using a keyboard continuously. I was not able to go back to work for another eighteen months. The pain in my hands can still flare up again sometimes if I write or use a computer keyboard too much.

With regard to my mental, cognitive and intellectual functions, I suffer from anxiety which at times has been very severe, as well as emotional distress when I am in a lot of pain. The anxiety itself began in 2008, when I suffered a nervous breakdown. For several months I was in such fear that I couldn’t function, or even be left on my own for long; my partner had to take two months off work to look after me. I was on very high doses of valium at the time. I had a lot of help from an organisation called No Panic, which runs a helpline, but it still took me much of that year to recover. It was the worst time in my life, and whenever I suffer bad anxiety now the feelings are worsened by a fear of becoming as ill as I was then.

Since 2008 I have had fairly frequent recurrences of anxiety. These setbacks are often triggered by flare-ups of pain or other health problems, many of them quite minor. My anxiety also worsens these flare-ups, by adding extra emotional distress to the distress I already feel as a result of the intense pain. During flare-ups I struggle to manage both the pain and the anxiety, and my GP sometimes prescribes me valium to help with the latter. I don’t take valium all the time, but I do need it to help me through the worst of these episodes.

When suffering from anxiety, I am under such stress that it is difficult to concentrate on learning new tasks, coping with changes, and dealing with people I don’t know. I also feel nervous of answering the phone at such times. The stress involved in such situations tends to feed back into my pain and anxiety, making both worse because I am under such stress. When this happens I need to rest in a comfortable position (ideally, lying down), and practise deep relaxation exercises such as diaphragmatic breathing, in order to reduce pain and anxiety. I also practice mindfulness meditation, but it can still take days or weeks to bring the anxiety back down again.

As an example of the ways in which my anxiety would affect my ability to work, this current situation with my benefits has itself caused me significant anxiety. Receiving the letter which mentioned that I would not receive any ESA payments from January 2013 was a big shock, and as my partner and I did not understand the situation we needed to make several phone calls to the DWP for an explanation of how ESA works. This was so stressful for me that I had to go to bed to try and stay calm, while my partner made the phone calls. I am also very anxious about my interview at the Job Centre on Thursday, to discuss ‘getting back into work’. My feeling is that the DWP still believes I am capable of work, and so the thought of having to explain all this once more to someone I don’t know is very difficult for me.

I have been prescribed anti-depressants since my chronic pain began eight years ago, but I still experience low mood. In 2009 I suffered a spell of deep depression following the onset of a big and debilitating pain flare-up. This depression lasted several months. Even now, I still have to work hard to keep my mood up, as the pain and my inability to do many of the things I want to do causes me such distress. Over the past few years I have had frequent support from Health in Mind (the local mental health team), which has helped me to manage my mood, but it is still very difficult at times.

In a work situation, managing both the pain, anxiety and my mood during a flare-up would be next to impossible, and once again I believe that I would inevitably need a lot of time on sick leave in order to recover. Such times are also emotionally distressing for my partner whom I live with, and whose life includes extra stress when I am suffering in this way.

Finishing tasks is another area that I would find difficult at work. Because I need frequent rests, completing tasks takes a lot longer than it would for someone without my chronic pain condition, which I believe would make it very hard if not impossible for me to meet targets and such.

I can get about on my own if it is to a place that isn’t too far. However, if it is further than walking distance I need someone to transport me in a car or a taxi (I don’t drive). This is because I find bus and train travel too painful, partly because of the seating and also the waiting times. Such travel therefore exacerbates my condition and tends to make flare-ups more likely. My partner works and lives in London for three days each week, so would not necessarily be able to drive me to and from work.

Such difficulties are very common for people with my condition (neuropathic pain or NeP), which is notoriously difficult for people to manage. One of the main problems is that often an activity does not cause much extra pain at the time, but tends to trigger it afterwards. So sitting or waling for too long, for instance, might be manageable at the time. But doing it persistently always leads to pain flare-ups. I’ve learned this through long, hard experience, which is why pacing myself and resting frequently is so important. It is also something that was confirmed on a pain management programme I recently attended at the hospital, where much emphasis was placed on pacing and relaxation as well as certain exercises which help to strengthen and mobilise without increasing the pain.

Part of my pacing involves gradually trying to increase what I am able to do. It is a very slow process, but I believe I am gradually improving in my ability to do certain activities without increasing pain or causing flare-ups. I hope I will be able to go back to work sometime in the future, especially as I greatly enjoyed my last job working with people with mental illness. But that time is not yet. I do not believe I am ready to go back to work, as my condition has not yet improved enough for me to be able to do so. 

Although I would really like to work again, and hope to do so in the future, I firmly believe that working at present would present a huge risk to my health – both physically, in terms of greatly increased pain, and mentally, in that it would almost certainly worsen my anxiety and low mood. I cannot emphasise the latter too strongly. My anxiety seems so closely tied to my physical health – my chronic pain in particular – that any increases in pain as a result of work, not to mention the stress of the working environment, would almost certainly make me anxious and present a risk of another nervous breakdown. At the present time, working would be completely impractical for me – and I have previously sent you letters from my GP and counsellor advising you of the same.

I hope that what I have said here, as well as the other letters which will follow, will give you a better idea of how my condition affects me and help you to make a decision which reflects this. I believe I am fully deserving of both the works and support components of ESA, and am asking you to award me the support component because of the extent of both my physical and mental difficulties.

Finally, I would like to add that this ongoing situation of having to defend my claim for ESA, is causing me great emotional stress. Almost every day now I am anxious and worried about my claim, and my mood is often low. I have already suffered eight years of physical pain and four years of anxiety. I did not ask to be ill, and I would be out there working in the world if I could. And yet, although I trust that staff at the DWP are trying to help me, the process is making me feel powerless and stigmatised. These are not good or safe feelings to have, for someone who already frequently suffers from anxiety and low mood, and I am worried about my mental well-being as a result of this ongoing situation.

Please do contact me if you have any questions. I look forward to hearing from you soon.

With best wishes