Tag Archives: Welfare State

Bureaucracy – An Update

Some time ago, I attempted to explain the form filling nightmare that is the British benefits system. To be fair, I expected to fill out forms, just not as many as I did, nor did I expect to have to prove that I was not a Big Fat Liar. Three months on, however, I am in exactly the same situation I was in before I spent a considerable amount of my time writing my name and national insurance number over and over again.

If one thought that as policy makers, governments worked at a snails pace, it appears they work at a similar speed in all other areas under their remit. I am generalising here, incorrectly of course, for our Government is great, I am only talking about the Department of Work and Pensions (DWP), and then I am not even really talking about the DWP, for they have passed my claim on to a contracted out company for assessment. My claim has been under their assessment for 92 days and they are yet to have looked at it. Let this be a lesson to you all, contracting out services works!

I have applied for something called Personal Independence Payment, which replaced the Disability Living Allowance. I am well aware that I do not need the full payment this benefit can offer. I do however, find that there are certain things that cost more money, now I’m a a disabled. Travelling costs more money and it is more difficult than it was before. I get more buses because I cannot walk as far, I even venture on the tube now, even more occasionally than that, is the luxury of a taxi because I get too tired to move and my back feels like it is going to snap; these may sound like small things to you, but they cause me no end of headaches. In my flat, I cannot properly clean and I cannot carry my groceries. I attempted the Hoover yesterday, and let me tell you, today, I very much ache, despite my double dosing last night. There are small adaptations to be sure, but adaptions that cost me money that I do not have, or ruin my few good hours a day with unnecessary pain.

It is not just your money I am after. I really and truly want the government to recognise me as ‘disabled’. It would well and truly make my disabled life much easier, if I were qualify for the national concessions. It would make my bus journey safer and it would give me more energy when I am being driven. It would mean that I would not always have to say why I am disabled.

I have been waiting for the outcome of my PIP claim, before I pursue local options, as it means that I would have to jump through less hoops.

I am becoming doubtful, that I will ever receive extra support. I mean, I get up and go to work, so why do I deserve any help?

I chased my claim last week, not by actually running after it, but by picking up the telephone and calling the DWP. After fifteen minutes, I was told that my claim had been received (they do not send acknowledgments or holding letters), and it had been forwarded to ATOS to process. It was forwarded to ATOS on the 26 September. Helpfully, I was told that this was a long time ago and it should have been processed by now, for this process should take between 6-8 weeks. I was then given a schpeel about the various stages of making a claim, and I was told that they may contact my Medically Trained People (paraphrasing) to see if I am truthful (paraphrasing again). That was exactly the same information I was given in September, and given the fact I had to provide contact details, I found this statement outrageously shocking. Oh, and I may be asked to attend a physical assessment. The DWP could not help me further, so I was given the telephone number of ATOS, to hasten a response directly.

Twenty minutes later, I spoke to a lady at ATOS, who informed me that they were in fact in receipt of my claim, and I needed to be aware that when my claim is being investigated, my Medically Trained People will be contacted and I may be asked to attend a physical assessment. I asked why it was taking so long, in my polite voice, stating the timescales I had just been given by the DWP, to which the the lady became agitated. According to her, the DWP had no right to say that to me, indeed, the DWP is to blame for the whole thing, because they underestimated the number of PIP claims to be processed when they introduced the new benefit, and presumably, contracted out the service. The lady was mad. I feel I calmed her down when I said “okay”. She then decided to tell me that when my claim is processed, I should expect for my Medically Trained People to be contacted and said I may be required to attend a physical assessment. It was good to know, because I had forgotten. We finished the conversation with me being told that there is no timescale by which my claim needs to be processed, when it is, I’ll be contacted by the post.

This is my first experience of the UK benefits system. I am very impressed by it.

I just know that when I finally receive the letter, the dog will have eaten it before I have a chance to read it.

EJB x

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Material Girl

Money, my friends, makes the world go round. The world go round.

The world go round. You can make your clothes out of old curtains, grow your vegetables in the back garden and ignore social practice, but money will still make your world go round regardless of whether you want it to or not. What I mean is, people need money to exist. People who live in London, definitely need money to exist. I need money to exist.

Since I was a wee girl of 11, strutting the tiles of Langtoft Village Shop, I have been fairly pragmatic when it comes to money. To get money, you work. Once you have the money you have earned, you spend it. If you are lucky, you may find a job that you enjoy. For those lucky few, and everybody else for whom that 9-5 is a means to an end, the simple fact of life is to enjoy said life, you have to have money. Not bags and bags of the stuff, but enough money to feel comfortable, pay your way.

I have worked hard to create my own personal level of comfortable. It’s average looking, but it is mind. I did not pick a profession that will ever pay me bucket loads of money, instead I chose one that comes with a steady income, benefits and crucially, one that I enjoy. That job pays for me to live a life that I have become accustomed to. A life, that of late has been put on hold by My Myeloma and the treatment for it, but within that, I have occasionally been able to experience glimpses of the old me, when my health allows. These glimpses, cost money. Holding on to the things I enjoy, cost money. My life costs money. Even sitting in my flat, not going out, not seeing people costs money, let alone my hobbies of Russell & Bromley and the British Film Institute. The things that were treats before myeloma have became medicinal with it. Even medicines cost money my friends.

Money, money, money.

I do not feel like I have lived a particularly hedonistic lifestyle. Others of course may disagree. Each to their own. I know I have not been overly sensible with mymoney. I have spent it. I spent it all, for I always thought there was time to start saving. Unfortunately, I discovered yesterday, that the likelihood of me being able to do that now is slim. For I have gone onto half pay. My stocks are down. I have plummeted. Fortunately for nosey parkers, I do not come from the school of thought that talking about money is ill mannered, so in actual terms, I have experienced a reduction of Β£15k (figure has been rounded up for presentational purposes). In addition to a pay cut I had to take when I was first diagnosed, since August of last year, I have experienced a total reduction in earnings of Β£20k per year. Still, it could be worse, no pay comes with another four months of absence.

This is nobody’s fault.

I did not smack somebody in the mouth. I have not spent the last year secretly running marathons when I have said I have been sleeping. I have not even been fired. No errors were made. It is not retribution. It really is nobody’s fault. I hate that nobody is to blame for this. It makes me cry.

I always knew, in the back of my mind that this was possible, I told you so in December, but I blocked it out. I could not handle thinking about it for the same reason why I am finding it difficult to accept. Also, and this really is the shitter, I unfortunately misunderstood The Rules and I thought that I had considerably more time and was planning for that scenario. Maybe I should have saved more. Maybe, when I was diagnosed, I should have saved more. As well as going to the hospital, accepting my illness and losing my life, I should have started to save. I did not. My employers have been incredibly accommodating and it is not their fault either. Have I emphasised their kindness enough? They have allowed me to do what I can and out of everybody, made me feel normal again. The Medically Trained People are not to blame, they are the ones fixing me.

The sad fact of My Myeloma is that I cannot work right now. In terms of work, in the last twelve months, I have done as much as I could, I worked during two rounds of chemo (the first round was not formal, it would seem), but that is not enough in this world of money.

It is not possible for me to live the life I want to live, even with the limitations of myeloma, on Β£15k per year. Lord knows what will happen to me when I receive nothing. Shall I tell you why? I have a life in East London, that is anchored in a flat that I have lived in for four years. The flat, costs Β£625 per month plus bills. In case you started thinking, I would not be able to find an equivalent for less. I cannot even look under my bed. I have a pension, whether in the end, I need that, is questionable, but it is best to keep it going for morale’s sake. I care about the planet, it’s creatures and stuff, but I also like lipstick, brogues and Kronenberg. All these things, every time I whip out my Visa, keeps me ticking along. Think less of me if you wish, but this is my life. Money makes me happy.

My Myeloma has taken that away from me.

Cancer takes away so much. It destroys more than one’s body. Already, I have seen my life change to the extent that what I had before my illness is dead and buried with the words ‘in credit’; this extra something something, has just stripped away more. It has taken my last strand of independence. I know I am fortunate to have gone this far without worry (too much) about it, but now, My Myeloma has removed my main ability to cling to my past and because of that, I am utterly, utterly devastated. My devastation is made worse because I have a cancer that will come back, which means, so too will this problem, and it will get worse, as will the cancer. That my friends, is something to look forward to.

Hell, I really am just a material girl, living in a material world. Correction, was…

I am now a girl exploring the benefit system. Apparently, loads of people get them. Fingers crossed that applies to me too, otherwise, the Bank of M&D will have cough something up. Regularly.

My last lingering thought is simple, if I cannot buy anything now, what am I supposed to use the Internet for?

EJB x

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The Cost Of Cancer

Once you have processed your diagnosis and your treatment, it is unfortunately necessary for one to deal with the life admin. Despite being stuck in this inexplicable twilight and having to come to terms with a diagnosis and prognosis, which is beyond unfathomable, I have had to learn that life goes on. Everything that existed before, continues to tick over. Bills, pay, money, living costs; these things still continue even though you have cancer, and they have to be managed because you hope at some point, having a bad credit rating will matter again.

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I have probably spent three months with my head stuck in the sand about much of this. Coming to terms with My Myeloma was enough to manage, without me beginning to consider how I could and can financially survive, maintaining my much needed level of comfort, whilst trying to survive within this bubble of cancer. I am now at a point where I have to deal with my finances. Cancer costs, in more ways than one.

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Thankfully, I am in a better situation than most. I am an employee, and my employer does take care of people like me and even others, who could do with a healthy dose of humble pie. Last week I had an occupational health referral and the lady on the other end of the phone was most perturbed, to begin with, about me continuing to do work when I feel able to do so. It did not take me long to get across the importance and weight my work means to me in my life. Continuing with some normality, for somebody who has had a job since they were 11 years old. In those early years, staking shelves really was a hoot. Continuing my work is not just about my sanity, it is also about me, continuing to give back and support those I respect. Despite me winning her over, or appearing to win her over, there is still a high probability that in the new year, I will move onto half pay. Six months really can fly when you are not having fun. I live in Dalston and I am a civil servant. Half pay will cover my rent and approximately two third of my bills. That’s it. It will not cover my food, my online entertainment services and my occasional acts of generosity. It would be a fair assessment to say that I have discovered Ocado and high end branded teabags at the wrong point in my life.

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Ever the pragmatist, this last week, I have started to investigate what Government funds are available to me. Once again, Macmillan Cancer Support have shown their worth in this area. For somebody who has never claimed any benefits, it looks and reads like a whole load of gobbledegook. I suspect I work in the right Government department, because the Department of Work and Pensions would be lost on me. I am surprised so many people are actually in receipt of benefits. The forms are endless. Take the Disability Living Allowance, the form, for which I could get Β£20 per week, is 42 pages long and has to be accompanied by evidence that I am sick and a list of things that I can and cannot do including the number of meals I can cook myself in a week. Crucially, microwaveable meals do not count as cooking. Phew. I am also going to apply for a Blue Parking Badge, just to save my legs and back on the occasions when I am am able to go to a shop and somebody has a car. Then the worst case scenario, is applying for Housing Benefit, if I do end up on half pay. I haven’t even begun to look at that form yet. Thank goodness for the welfare state.

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When I was first diagnosed, I thought I would end up saving money. In reality,this has not happened. I took a slight pay cut because I am not able to do some add on work, and in these dark times, sometimes, just sometimes, I just need a little pick me up. Some lipstick, some food or a taxi. Just things to make my life easier and keep me sane. I imagine these little perks will have to stop in 2013.

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Everything costs. Everything.

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Just keep paying your taxes people, because out there, there are some people like me, who actually need the help, and I am not even thinking about the NHS right now although clearly, I need that little beauty too.

EJB x

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(Dis)Able Bodied

I never dreamt that at the age of 28, I would have to use this for any other reason than sheer laziness. It is a myeloma matter of fact however, so I am embracing it.

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Now, I really should sort that Blue Badge out and the Freedom Pass. That’s right, I said Freedom Pass. Must convince the Medical People that I deserve free local transport to be reviewed in a year. Well, I do have cancer…

Glass half full.

EJB x

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