“The atmosphere of disbelief with which one is approached by the government is like a miasma”

Over 500 people have now viewed the piece I posted recently under the title “De Profundis”.

I told the author of the original comments that I believed that we could only make progress in persuading enough people – and ultimately the government – that there is something fundamentally rotten in the arrangements that have been made for assessing people’s suitability for the new Personal independence Payments (PIPs) if more and more people would be willing to talk frankly about the way the experience has affected them.

She kindly agreed to do so, and here is the result.  She asked me to refer to her by an assumed name in future, so I am calling her “Emma”.

Until now she has been dealing with her applications without skilled advice.  I have told her to obtain help for her pending appeal, and I hope she can find someone wiling to help her.  In the meantime, I have referred her to the three websites I have mentioned in earlier blogs.

She is a woman of 49, who suffers from rheumatoid arthritis, inflammatory bowel disease and mixed connective tissue disease.  She is unable to cook or to clean her house, a walk that used to take her 5 minutes now takes her 45, and even then she had to flag down a passing driver to help her to complete her journey.  She says she has an existence, not a life.  Her story speaks for itself.

 

Emma’s story

I contacted the DWP[1] last year about applying for a PIP[2]. I had support from a lady working for the local council in order to fill out the long forms, and she attended the interview with me, which took place at home.

The lady conducting the interview was able to disregard much of the information she was given, asked the accompanying person not to speak (even though I was struggling to explain myself) and used “informal observations” as evidence that I was coping.

The report cited the unwashed crockery in the kitchen as evidence I was cooking; not as what it really was, my son’s ability to cook for his friends. Stating ” oh really, teenagers don’t cook like that!” As though trying to be a good parent and ensuring my boys have skills was a lie, because it doesn’t happen in her world.

I was refused a PIP on that occasion, reasons being my appearance, and a lack of medical evidence. When I spoke to my GP[3] and rheumatologist, they both stated that they would have supported my application, but had not been contacted by the DWP. Literature from the DWP clearly states that sending reports from medical staff is good, but that they will contact the professionals involved, except in my case, they did not.

I gave up on that occasion and did not ask for the decision to be reconsidered.

I applied again this year. My health has deteriorated, managing even small tasks at home being a trial, the resulting pain, stiffness and crippling fatigue making the task worthless. The days afterwards are  punishing, the next few days nothing more than a blur of pain.

Again, the DWP visited me at home. The assessor refused to acknowledge that my condition had deteriorated, or that getting up to the door had  caused me pain that wouldn’t go by having “a little sit down”.

My son joined us, and tried to ensure that my condition (Rheumatoid Arthritis, inflammatory bowel disease, mixed connective tissue disease) were understood. Unfortunately, nothing my twenty-one year old son had to say was of any interest, and was discarded by the assessor. I felt she deliberately tuned out his words.

Several weeks later, the report arrives. The report views me as able to communicate with no difficulty, and reports no problems noted. Interestingly, each statement on the report begins

“I decided that you can…”

Medical evidence regarding my grip was “measured” by her asking me to grip her hands. I can’t cut a slice of toast in two, but her assessment showed there was no issue. Grip strength tends medically speaking to be used as an indicator to highlight disparity of weakness for example, in stroke patients, or for brain injury. I believe its use in this context to be misguided.

Stating that I can plan and follow a journey unaided is blatantly untrue. Between joints that scream, a bowel with a mind of its own, an inability to walk any distance and feeling truly overwhelmed, I get lost, and now I just don’t go. I feel fearful when I’m out. I can’t protect myself from my own body, so how can I manage outside? I find people very stressful, I have no social skills and no one to help. The list of things I can’t do is long and the list of decisions made by the DWP stating that I can do them is equally long.

Last week, I had an appointment for hand physiotherapy. A walk that used to take me five minutes, took forty-five, and I didn’t even get there. I was so desperately uncomfortable I had to flag down a passing driver and ask for a lift. Unsafe, you might say, but interestingly enough, my thoughts  at the time focussed on not having to crawl down the street.

There was a man in front of me, driving a Land Rover. I instantly dismissed asking him for help as he was “too rich” and I really thought he wouldn’t want to help me. If I hadn’t asked someone, I’d have been on my knees in the street. I am so grateful to that man.

The atmosphere of disbelief with which one is approached by the government is like a miasma. It hovers around me making me question my own experience of my life. In the DWP practitioner guidance, the words “repeatedly, regularly” and the phrase ” “without significant pain or discomfort”, are cited as important to the result of an assessment. My experience is that none of these tenets have been applied to me. To note that I have “normal musculo-skeletal function” is contrary to all the medical evidence. That being said, how then is the report accurate? The estimated cost of my disability is about £500 per month. I no longer have the ability to work, so repairing or replacing items is no longer an option. I am almost out of clothes, ruined by washing and trying to keep clean. I can’t change my bedding, so I gave up putting clean duvet covers and sheets on as it was taking me a whole morning, leaving me in pain.

My poor, neglected, twenty-year old bed, held together with cable ties, is falling apart. I’ve been told by the rheumatologist that a new bed might help the pain I am in. I nodded, smiled and said “thank you” knowing full well that without the means, it will never happen. And I don’t have the means. The government has decided that my pain is insignificant, my words are lies and not only am I lazy, I just need a job.

I have a bowel condition, a blocked toilet that I can’t afford to fix, and the government is certain that work can be considered within eighteen months.

I found this an interesting development, and I wouldn’t have found it unless I had been sent a letter from the job centre. It “offered” me the opportunity to discuss work. It is common knowledge that failure to attend one of these interviews will end benefit payments.

I can no longer afford a landline, so I asked a neighbour if I could use hers, and began the process of finding out how this had happened.  Several calls later I was told that the group I was in for ESA[4] support had changed, and now I was in the WRAG[5] group. I asked who, how, why, where and when this decision had been made. I also asked for all documents relating to this, and a copy of the recording of this conversation.

Remarkably, I was then told, no, I had misheard, I was in the support group. Eventually, on speaking to a supervisor, I was told I could have a transcription of the call but not a recording, but she was sure I  misheard. I know I didn’t, it was the first thing I wrote down.

Anyway, the interview with the job centre was eventually cancelled, but I made certain that notes were placed on their records, stating that the interview was optional and that I was not at risk of losing my ESA. The letter gave no indication that the interview was optional, and I wondered how I had come to their attention.

On speaking with the benefit support officer from the council, I was told that a PIP assessment or application for a social loan would generate one of these letters.

These letters generate huge stress for the recipient: the knowledge that someone, somewhere has made a decision that your time should be spent working and not coping with illness. Implicit in the letter is the cessation of benefit payment.

I received a communication from the PIP department to the ESA department. It states

“The client has been diagnosed with a number of complex medical conditions. The client has indicated severe restrictions in mobility which are consistent with the GP information.  Cannot mobilise 50 metres within a reasonable timescale, because of significant pain, discomfort and exhaustion. This suggests limited capacity for work. Use of a self-propelled wheelchair would not allow safe, repeated and reliable movement.”

It then states:

“I advise work can be considered within eighteen months”

although the top of the letter  states I have a ” severe functional disability”. Even so, I am having to appeal against the decision not to allow me PIP[6].  Their internal communications acknowledge my ill health, but their replies to me make light of my situation. I applied for a loan from the social fund to pay for surgery for my dog, which turned out to be the reason the job centre contacted me, but if they hadn’t, I would not have received the letter from the PIP department.  They know how life is for me, but they choose not to acknowledge this in any meaningful way to me.

I wonder if the person writing the report was even the person I saw at home that day. The report I received was signed by a man, and I saw a woman.

Navigating this system is expensive in terms of finance (the calls are long and expensive) and retrieving information is difficult. I found myself planning what to ask, what guidance I could seek three days prior  to the calls. Even then, it was exhausting, stressful and I came away feeling agitated.

I became depressed about four years ago, when it became clear that managing my job was a physical impossibility and I kept going to keep my family in one piece. None of it was working, and my health deteriorated. I eventually gave up the second job I had, and within two years my little family was falling apart. I have struggled to recover from the depression, but it turns out I’m quite resilient. Had this been another person, they might be tempted to end their life. I thought about it, but my boys and my dog love me. So I didn’t.

The issue with disabilities is that life gets smaller and getting out for medical appointments problematic, expensive and complicated. Life, in the ordinary understanding ceases to be. Pleasures are less frequent, friends vanish, and covering the costs of necessity almost impossible. At the moment I am unable to clean because I can’t grip a vacuum cleaner or stand for the time required, so I need a cleaner, even just to help me get back on top of things. I am no longer a social individual, so friends are not an option and since my son was home three months ago, I haven’t seen another person.  There aren’t people to help, so I should help myself. I would, I really would but….

Here is my budget:

Money in – £400 pm

Money out – £362pm

leaving a food budget of £38 per month. I have to pay back the social loan at £50 per payment, otherwise I would have £500 pm. The government see this as adequate for living alone, and it takes into account what they see as extra costs associated with disabilities in that payment, but I am declined PIP. I have worked all my life. At times I have had two jobs, and now, like others in the same position, I am literally on my knees. I am now forty-nine, and I feel as if my right to life ended when I became unable to work. Except, I only have an existence. And I am unconvinced this government wants me to have that.

There are essential repairs needed to my home, but I can’t afford to pay for services to have them completed.  I am not a person with any sense of self-esteem, and I don’t feel entitled to anything. I don’t choose this life, for whatever reason, it chose me. At some point in the next eighteen months, the person described above will be expected, with or without the unsafe wheel-chair,  to be back at work. I am prone to infection, in pain and discomfort and this illness is deteriorating. I am reasonably intelligent, I love to write, but I am not a person anyone would employ.

On my current budget, it will take me two years to save for a plumber (I got a quote) as long as I rarely eat (well, I have some excess weight), go nowhere, and am happy to live in a home I can’t clean. As long as I ignore all the other urgent repairs. As long as I never have my children to dinner, buy them birthday gifts or celebrate Christmas.

Being disabled means never being seen, not partaking in life, being silent.

I tried to get some charitable assistance. Many were sympathetic but asked that I contact them after I have been awarded PIP.

To be disabled in the current climate means isolation, poverty, dismissal and relentless difficulty.
[1] Department of Work and Pensions.

[2] Personal Independence Payment.

[3] General Practitioner.

[4] Employment Support Allowance.

[5] Work Related Activity Group.

[6] On this occasion I asked for a mandatory reconsideration, when I was again turned down.