Complaint Letter To DWP About Lack Of DLA Decision

11/30/2010 06:18:00 pm BenefitScroungingScum 13 Comments

Dear Sir/Madam

Re: COMPLAINT about lack of DLA renewal decision for Bendy Girl

I am writing to complain about my renewal for Disability Living Allowance, for which my current award of High Rate Mobility and Middle Rate Care ended yesterday, 29/11/2010. Despite having returned my renewal form to you in a timely fashion by recorded delivery on 20/09/2010 and including evidence from my carer, my physiotherapist, my best friend who is a policeman  and the support of my GP I am yet to receive a decision. 

The lack of decision is causing me significant hardship. My other benefits  particularly Income Support will be affected as I will lose the premiums I receive in place of carer’s allowance and for the more severe level of disability.  Whilst I understand these will be reinstated and any payments backdated assuming there is a favourable decision about my DLA that is not much help whilst my income is so dramatically reduced for an unknown length of time, especially as I have a significant rent shortfall made up by DLA to cover the cost of having moved from an inaccessible to a more accessible flat. The loss of DLA for more than 4 weeks puts me at very high risk for becoming homeless. I also use my DLA to pay for my carer and physiotherapist as the specialist physiotherapy she provides for people with my genetic disorder is not available on the NHS. The loss of DLA and impact on other benefits, even temporarily, puts those services at risk and means my condition will deteriorate. I am unable to relocate all the dislocations I experience myself, spinal dislocations are especially difficult to relocate alone and of course have the potential to permanently damage my spinal cord. This cold weather means my high heating bills are even higher than usual as it’s so difficult to keep warm when even the slightest movement causes my joints to dislocate. The changes in rules to Blue Badges mean that I am now also without a Blue Badge as they are automatically issued for those in receipt of HRM. Without that I will have to get a letter from my GP, at possible cost to myself, but more difficult is the practicalities of being without a Blue Badge for an unknown period of time. I can ask a friend to take me to the One Stop Shop to renew my badge, but they risk a parking ticket as my blue badge has already run out! 

The stress of reapplying for DLA has been immense. It took me months to fill out my form as my disability only allowed me to complete small amounts at a time. Living with an untreatable, incurable, degenerative genetic disorder is difficult enough, but having to focus on every detail of how that condition impacts adversely on my life to fill out the DLA form has caused me to develop mental health problems as a direct result. 

Each staff member I have spoken to about my DLA renewal has been kind, considerate and helpful. I understand the pressure of the workload is significant and would hate to criticise people who have spent time reassuring me. However, 9 weeks to make a decision should be more than adequate, especially when so much supporting evidence has been provided. Ultimately my condition is untreatable, incurable and degenerative in nature. Continued reassessments are costly both financially and emotionally as well as pointless as for me, there is sadly no hope of recovery. 

I would appreciate it if my case could be directly passed to a Decision Maker for an immediate decision.  I will be contacting my MP if I do not hear from you within 14 days. 

Yours sincerely

Bendy Girl 


Appeal For Anton

11/29/2010 10:11:00 am BenefitScroungingScum 1 Comments

 Update: 17.04.2012 Baby Anton has found his forever family!
An Appeal For Anton From Melissa

We all know that, maybe now more than ever, the UK is having to tighten it's belt. The government are making more cuts than Zorro did to maidens’ dresses, and public services have been locked in a vice-like grip, both of which do little for the happiness and healthiness of the population. And although I want to fight these problems, not just for myself, but for all of those who are affected by them, there are times when we are forced to take a step back and say “this could be much worse”.

Imagine being one of twins, born to a surrogate mother in Russia, while your biological parents wait for you in a foreign, affluent country. Now imagine that a photo of you and your twin is sent to your parents, and they see their baby boys for the first time. Imagine how you would feel if your parents, your flesh and blood, took your twin brother home, but never even held you, because you have a genetic skin disease and they didn’t like the look of you. That is what happened to baby Anton, and he is now languishing in a Russian orphanage, with no access to specialist care, dressings or feeds.

I was born with the same genetic skin blistering disease as Anton, called Epidermolysis Bullosa (EB), which causes extreme fragility of the skin and internal mucus membranes (it’s like having third degree burns every day, swallowing bleach, and often having the skin ripped off of your eyeballs). It affects every aspect of my life, and has meant lengthy spells in hospital, many bouts of painful surgery, and a daily five-hour treatment regimen. It has killed twenty-five of my friends, and many more acquaintances. But I can, and largely do, cope with EB, because I’m incredibly fortunate to have a wonderful family who are there to support me with all of the obstacles EB puts in my way.

The thought of little Anton, lying in his cot, staring at the same single toy he has had for all of his ten months is heartbreaking. When you are in physical pain, distraction is key, but he has no choice but to lay there, alone, acutely aware of every wound on his tiny body. The nurses at the orphanage do everything they can, but their time is stretched already. People with EB need extra nutrition, as our bodies are constantly working to heal our wounds, but from seeing Anton’s painfully thin arms and legs, it’s clear that this nutrition is not available to him. He has a naso-gastric tube inserted, which implies he, like me, has difficulty in swallowing; I would guess it takes too long for him to swallow his milk, and so tube feeding was the solution. This means that he does not receive even the basic physical contact of being fed, as most babies would be. I can’t describe how important the loving contact of my parents was, and still is, to me; when every part of your body hurts, feeling the touch of a loved one, and being reassured by it is crucial. Anton is missing that, and has little prospect of experiencing it, which leads me to worry about how that will effect his emotional and mental development.

His physical health is also in grave danger. Those of us with EB as severe as Anton’s need specialist dressings to heal wounds and reduce the chance of infections, as well as medications to guard against deterioration of the body from the inside - iron, zinc, anti-acids etc – as well as efficient pain relief to make life bearable. If Anton does not receive these essential provisions, his life will be cut tragically short. While the NHS may not be perfect, its existence prevents us from ever trying to survive in conditions such as those Anton is enduring.

While an American adoption agency is still trying to find Anton a home, we can help by making monetary donations (where possible), or even sending items out to Anton to let him know that he is loved. If you have children who have outgrown their cot toys, or even their soft clothes (big or rough seams are very damaging to EB skin), I am sure they would be welcomed.

We have a voice to speak out against what scares us, to ask for what we are being deprived of, and to challenge those who seek to abandon us to our fate. Anton has no voice, and has probably never spent enough time with an adult to learn how to speak. I cannot imagine being that isolated, whilst living in a body that is alive with agony and rot. That is why I have written this, and why the wonderful Bendy Girl is posting this. We want to give Anton a voice, and we hope that you will listen, so that we can all give him hope and some semblance of happiness.

If you can’t donate money or items, you could donate a few minutes of your time to tell Anton’s story to others. You never know what they might be inspired to do…

Thank you x

Footnote from BendyGirl: My blog readers are incredibly generous, £175 was donated via this blog to Melissa's appeal for DEBRA. This time we're asking for something a little different, although financial help is much needed for Anton. I know lots of my readers have business connections around the world. Does anyone have connections to Russia to organise getting donations of money, food and equipment to Anton? If you can help please contact myself (@BendyGirl) or Melissa (@Queeniejelly) on twitter or email me at and I will forward your messages to Melissa. Thank you so much, BendyGirl Xx


In The Eye Of The Beholder

11/28/2010 03:02:00 pm BenefitScroungingScum 1 Comments

As I'm still so low on spoons I'm reposting some older relevant blogs. This and the previous two are looking at how we view disability and some of the common misconceptions about who is disabled and what that might mean. 
Originally posted August 11th 2008

The recent show Britain's Missing Top Model has challenged perceptions about disability and attractiveness perhaps for the first time in the main stream media, but away from the spotlight many of us confront those perceptions as part of our everyday lives.

After struggling for ages with what to say and how to say it, really it comes down to this. Disabled people are not supposed to be attractive. We equate looking physically attractive with qualities such as youth, vigour and good health, whereas disabled people are supposed to be tragic unattractive figures. Even better if they drool or lick windows too. We all know where we stand with that.

Of course it's not that simple. What is? Disabled people come in all shapes and sizes just like anyone else, and just like anyone else disabled people cover the whole spectrum of physical beauty. The difference with disability though is how that challenges our innate perceptions and fears.

People are afraid of disability and disease, almost as though some primal instinct to keep us safe from contagion is in operation. Fear breeds prejudice and confirms such negative perceptions by ensuring disability remains something slightly secretive and shameful, kept away from the mainstream where unfamiliarity continues to breed contempt.

Disabled people being physically beautiful challenges all those perceptions and forces us to think about issues we'd perhaps rather not. Instead of comfortably being able to see disabled people as on the margins of society, as less than equal objects of pity, looking at beautiful people who just happen to have disabilities confuses and forces the uncomfortable thought that disability can and does happen to everyone.

Once that thought is placed it's but a short step to many more unpalatable truths. The biggest one being just how far we all have to go before equality is even a tangible concept.


You Can't Tell By Looking

11/25/2010 09:00:00 am BenefitScroungingScum 7 Comments

As I'm still so low on spoons I'm reposting some older relevant blogs. This and the previous are looking at how we view disability and some of the common misconceptions about who is disabled and what that might mean. 

First posted 12th October 2009

This weekend brought the much anticipated wedding of Oldest Friend. It was a lovely, joyful day; the bride beautiful, groom handsome and children charmingly underwhelmed by it all. It was also the first time I'd seen some of the other guests for more than 10 years.

As we all know conversation on these occasions is pretty much limited to the school of "How are you?" I've now got a fairly standard 'yes I'm well thanks, had some health problems, interfered with career but all is good' then quickly deflect the questions back to the other person kind of answer. Upon reflection I decided that the only advantage of attending a wedding solo is not having to endure additional interminable questions about my lack of partner!

Almost without exception every person I mentioned having experienced health problems to replied with the statement "You can't tell by looking" or some variation of. Five words that seem so innocuous yet always leave me slightly flummoxed, because how on earth are you supposed to respond to that when you're not even sure what its supposed to mean?!

I've pondered this question on many an occasion but I'm still not sure of the answer. The popularity of But you don't look sick and the spoon theory indicate that the "you can't tell by looking" problem is a common one both for those with invisible disabilities and those without.

As far as I can make out, "You can't tell by looking" means any or all of the following things;

  • Shut up! Seriously, shut the fuck up! You look fine, great even. I don't believe you have anything wrong with you at all. Shut up!
  • Don't worry, if you're not drooling, pissing, shitting or any manner of 'anti social' activities it's ok to be a crip. After all, you look hot you know!
  • I'm jealous of the way you look and secretly delighted to hear you've been seriously ill.
  • Disabled people look....well, disabled. You don't. Therefore you are not disabled and my vision of the world can remain happily ignorant.
  • OMFG! If people who look well can be disabled or sick it could happen to me, or someone I love...cos they look just fine too. OMFG my brain is going to explode and drip steadily from my ears.
  • I'm really saddened to hear you've experienced health problems and the only way I can think of to express my empathy is to tell you how wonderful you look.

The reason this is so important is that most disabilities are invisible, which inevitably leads to an overall impression that there aren't many disabled people around so all those on benefits must be fraudsters. This kind of attitude can be so pervasive that I've experienced it on many an occasion from members of the medical profession. So much so that I suspect it's also linked to some of our most basic instincts and senses of how we humans make sense of the world.

It's particularly important to me to minimise the visible effects of Ehlers Danlos Syndrome. Not because I'm embarassed or lacking acceptance, but because it's better for both my physical and mental health not to focus upon it. I don't care if people see me limp, fall or use a wheelchair, and, as happened this afternoon I have no real problems with asking a stranger to help me should I need it*. What's important to me is how I deal with the symptoms of my condition. As EDS has no cure and in a sense no treatment psychological attitude is all. Over the years I've found that the more I smile the better I feel and the less I think about it or mention it the easier it is to deal with. I'll howl over major dislocations or occasionally have a whinge but overall I prefer not to bring it up and just get on with things as best I can.

The unfortunate consequence of that kind of attitude is that people in my real world life** generally have no idea just how extensive my disabilities are. Couple that with an invisible disability and I suspect I'll be hearing "You can't tell by looking" for many a year to come!

*Being rather cute had nothing to do with it!
**I know, and you know that blogging is the real world...but non bloggers just don't get that! 


The Elephant In The Room

11/24/2010 03:37:00 pm BenefitScroungingScum 1 Comments

 As I'm still so low on spoons I'm reposting some older relevant blogs. This and the following are looking at how we view disability and some of the common misconceptions about who is disabled and what that might mean.

First posted Dec 10th 2008

Disabled people, on the whole, tend not to be the most noticeable group. Wheelchairs, white sticks or window licking are probably the most common symbols people associate with disability, and are all very visible, albeit possibly not to anyone needing a white stick*. The point being that for most people, linked in their mind with disability are visible symbols. The flaw being that the overwhelming majority of disabled people do not have any visible signs of their disability and then there's a whole other group who do but are too busy being unwell/disabled to be out and about much.

It is easy to see how those common misperceptions could lead to a wider and more sinister misconception that there are very few genuinely disabled people and therefore very few genuine benefits claimants compared to the suddenly all too visible Karen Matthews style minority. After all, aren't screaming Chav mum's with fags hanging out their mouths everywhere clearly draining the very life from hard working tax payers?

As someone genuinely reliant upon the welfare state this constant barrage of abuse against benefit claimants is terrifying. The government promise to get a million people off Incapacity Benefit and into work even more so. That promise relies heavily on the assumption that the vast majority of Incapacity Benefit recipients are either workshy, lazy, fraudulent or a bit 'stressed'. An awful lot are claimed to have a 'bad back' too. The frightening bit is that this is just not a true representation of Incapacity Benefit claimants.

Ironically today the children of courage awards were at 10 Downing Street. Tonight footage of an 'assisted suicide' will be shown on television. Why do we recognise and celebrate the achievements of such children or battle to save babies born at 23 weeks whilst refusing to recognise those children grow up to be adults? Adults with disabilities.

This morning my 'surrogate mum' came round to have a bit of a cry. Her beloved husband, a man who served his country for 25 years and worked for many more is dying. He has cerebellar ataxia. This afternoon I met a mum with her bright, happy, beautiful baby girl. Who is about to be diagnosed with Hirschsprung's disease. I've never met anyone who is fraudulently claiming Incapacity Benefit**, but I know large numbers of young adults who are claiming Jobseeker's Allowance and also working. They leave education and as soon as they are able, living at home with their parents, sign on and work for cash in hand. They won't be affected by the current reform's though. All are on New Deal, all are going through the government mandated jobseeking process and all are committing benefit fraud. It's just not called benefit fraud when you're white, middle class and have taxpaying parents, then it's called 'being entitled to it'.

These current 'reforms' insist upon targeting Incapacity Benefit claimants and single mothers and as such are doomed to fail. At great cost to the tax payer. Those job brokers don't come cheap.

Deciding that it is no longer acceptable for society to pay our young people not to work when they leave school, college or university could work out a hell of a lot cheaper though. If any politician has the courage to confront the real issues instead of demonising the most vulnerable in society that is.

I'm not suggesting benefit fraud is not an important issue. It is, of course it is. Reform of the system is overwhelmingly needed, but more so is an honest discussion of the issues. Namely whether or not we as a country wish to continue providing a safety net to the most vulnerable, and assuming that is the case, how we wish it to work. The current 'reforms' are disingenuous at best and downright fraudulent at worst.

*Yes, you are supposed to laugh. Political correctness helped us into this mess
** I am not suggesting that there aren't plenty. Just not the numbers the govt would like you to believe. Single mothers do not receive Incapacity Benefit.


Melissa's DEBRA Lifeline Appeal

11/19/2010 09:00:00 am BenefitScroungingScum 8 Comments

Black and White photograph of Melissa showing her head and shoulders.

My name is Melissa Smith, and I'm a twenty-four year old English post-grad student, who loves all things decadent. I'm a fledging blogger, and I generally love writing, whether articles, stories or complaint letters to hospitals (they're the most fun!). When my body permits, I enjoy gigging with friends, shopping, visiting galleries, travelling and playing with my mad little dog, who completely ignores my disability and treats me like she does everyone else. If only all people could be like that!

On Sunday (21st November) at 4.35pm, BBC One is showing their monthly Lifeline appeal show, which highlights charities working to support people in the UK and abroad. This month’s show is particularly close to my heart, as the featured charity is DebRA UK, who support people with and fund research into treatments for, a genetic skin disease called Epidermolysis Bullosa (EB).

I was born with EB (of the Recessive Dystrophic sub-type) twenty-four years, and the best way I can describe its symptoms is waking up each morning with fresh second and third degree burns, and developing more throughout the day. The simplest of tasks can damage my skin, causing it to form fluid-filled sacs masquerading as blisters, or my skin will just lift off completely, leaving a raw wound. In my type of EB, this is caused by a deficiency of a protein called Collagen VII, which acts as a glue holding the layers of skin together. I have very little Collagen VII, and what I do have doesn’t work as it should. EB affects the entirety of my outer body, as well as my mouth, oesophagus, nostrils, eyeballs and inner ears. It has caused my fingers and toes to fuse and contract, limiting my dexterity and balance, and the blistering and nerve damage to my feet means I am usually reliant on a wheelchair. I am also reliant on my family, especially my mum, who is my official carer.

But that isn’t as bad as EB gets, not by a long way. I’ve seen friends of mine, with the same type, almost paralysed by the wounds and scarring, unable to straighten their legs or even sit up. I’ve lost twenty-five friends to EB, with complications including massive infections, heart failure, kidney failure, malnutrition, and most commonly, skin cancer (people with my type of EB are 70% more likely to develop a squamous cell carcinoma, and our bodies’ are often unable to prevent it spreading). Then there is Junctional EB, and it is one of the worst illnesses conceivable. Imagine thinking a new baby is teething, and realising that their gums are actually disintegrating, or having to give a child so much Morphine to make your touch bearable that they don’t recognise you any more, or watching your baby’s skin wipe off on their pillow, just because they turned their head. That is Junctional EB, and even Stephen King couldn’t dream it up.

But despite all of this, because of DEBRA, we have hope. They fund specialist adult and paediatric nurses who travel the UK giving home visits, and advising medics in hospitals; they buy equipment needed by EB patients in the hospitals that the NHS won’t pay for; they advise patients and their families on how to claim benefits, and fight the corner of those who are being challenged; and, last but by no means least, they fund research into treatments and cures for EB. For my family and me DEBRA have been like a recovery service – picking us up, sorting us out, and getting us on the road again. They supported us when our local authority said I couldn’t attend mainstream school, with our Director running rings around the officious idiot from the council, and since then they’ve encouraged us to believe that nothing is out of reach. They have done everything to support me, and now I want to return the favour. Especially as I’ve been a Trustee for the past few years!

I’m not asking you to watch the appeal in the hope that you will make a donation. I know all too well how tight money is for everyone who relies on the benefit system, and how uncertain the future is. I’m asking that you watch to learn about our little known disease, and how it affects our lives. So many people think of skin conditions as itchy rashes and minor problems, but EB kills on a far too regular basis. I don’t care for myself, I just desperately don’t want EB children to be bullied and to be stigmatised like I was. And I want them to have futures free of bandages and blisters. So if you could tune in, and ask your family and friends to watch too, I would be eternally grateful.

Thanks, love Melissa

Info link: DEBRA

Note from BendyGirl: Whilst my friend Melissa is too nice to ask you to donate to DEBRA, I have no such scruples! Money is tight for us all, but if enough of us donate just a few pence it'll make a huge difference. Donate to DEBRA here


The Big Society And The Charity Model Of Disability

11/18/2010 11:37:00 am BenefitScroungingScum 6 Comments

 A Guest Post From Diary Of A Goldfish

The government rhetoric around benefit reforms has a clear message: almost everyone should be in renumerative work. People not in paid work are not contributing. Even people who are in paid work but aren't earning enough to come off means-tested benefits, like housing benefit, are not contributing as much as they should.

On the other hand, all this talk about the Big Society has another message: lots of work that people are currently paid for should not be renumerative. Tuesday morning's headline was that social care was "everyone's responsibility". Which of course it is. Only up until now the general idea has been that everyone exercises this responsibilty by paying the government to provide what care can't be reasonably expected of family and friends.

And it all makes me rather nervous. Disability, benefits and social care are becoming about charity again. The Charity or Tragedy Model of Disability imposes a highly emotional set of value judgements on our lives, our impairments and the help we need and the roles of those around us. Under new benefit reforms, impoverished, unemployed disabled people are to be categorised as deserving or undeserving and the supposedly undeserving - people considered maybe able to work given a perfect and flexible job and a few other miracles - are to be made poorer and stigmatised as workshy. Our Prime Minister acknowledges the need to take care of people who are not able to work because this is part of being a compassionate society. The welfare state is portrayed as a charity, as opposed to the insurance scheme it always was.

Disabled people who need personal care are going to be forced to rely even more heavily on family and friends or volunteering strangers. Bendy Girl has spoken and written a lot about the benefits side of this at her place and Broken of Britain. But I wanted to focus on care.

Care is extremely difficult to define. Most of the help that disabled people need because of our impairments is not unique to disability and only becomes care when it is necessary to pay for that help. For example, my health prevents me driving or using public transport, but lots of people get lifts from friends and family for all sorts of reasons. I have trouble preparing food for myself, but there are lots of households where one person or other does the bulk of the cooking.

Over the years, I have had a number of arrangements with friends and family members where I've had help with the things I can't do in return for some help or other I can give them. Where I need so much help there's no question of reciprocity, I am extremely careful about the people I ask. But for most of my kith and kin, the help I have received has been no greater than the normal exchange of help and support.

But for some people, there is a profound difference between favours once disability is involved. For them, disability has emotional baggage and to help me because I am disabled is an act of nobility, compassion and generosity. They may be no more capable of, say, setting up an e-mail account than I am capable of driving or using public transport to get to where I want to go, but because I am disabled, their giving me a lift becomes an act of heroism my amateur techy skills can't compete with.

Such attitudes are a real problem, because quite apart from having to deal with someone who treats you like they're carrying you on their back up a mountain, they invest you and your impairments with so much emotional baggage. With tragedy, helplessness and dependence which is not your own.

And the current culture encourages this mindset. Placing so much importance on renumerative work or structured volunteering may even discourage people from spending their time and energy just helping out friends and family, which covers most of the help disabled people need - along with elderly people, young families and others who know very well than no man, woman or child is an island.

What I have been very lucky with is not needing very much intimate personal care, and not for very long. What I do know from my experiences with that is that it can be extraordinarily difficult receiving intimate care from people close to you. Sometimes it can work okay, other time it completely queers relationship dynamics and makes disabled people extraordinarily vulnerable to neglect and abuse.

Paying folk doesn't render all carers socially-conscious egalitarians, but it allows disabled people to make choices and maintain some degree of autonomy - to hire and fire people to some extent. This is much more difficult to do with unpaid volunteers, whether they are in your family or not. Sometimes the mere existence of an alternative buys an awful lot of power.

When benefits or any help disabled people get is seen as charity, our progress towards equality flaunders. Disabled people lose choices, and find themselves having to meet the emotional needs of others. As charity cases, we must be deserving, humble and grateful for whatever we get. Others must sympathise. And nobody who feels sorry for you for being who you are will ever see you as an equal.

Thanks very much to The Goldfish 


Flashback by Blood In The Sand

11/17/2010 11:33:00 am BenefitScroungingScum 1 Comments


It's just a normal day. I'm off to a job interview and nervous. I chew gum and fiddle with my Zippo. An old lady in front of me asks me where the train is going, she's a little confused and I'm happy to chat with her, it takes my mind off the nerves I have.

The train stops outside Clapham and I close my eyes for a moment. The gum has lost its taste and I'm worried about the lies I've put on my CV. The huge chunks of time I've been unemployed are now filled with bogus jobs and I'm not sure of the dates.

A shell explodes and then gun fire erupts. I stagger out of the back of the Panzer, terrified and confused. Above me a helicopter hovers. Tracer rounds belch out of it and I'm going to die.

It's Russian Hind-D, I remember Rambo at the movies, this is the helicopter that kills everything and I want to live. I grab a machine gun and hump it onto the door. I struggle to cock it and my breathing is erratic and strained.

My friend screams at me and pulls me to the floor. My helmet rolls away and I have sand in my mouth. 'It's one of ours mate' His words are blunt.

I look up at the Puma. Its loady is firing on the unseen enemy far away and I nearly shot it down. I climb back inside the safety of steel and go to grab my rifle. Adrenalin surges and insanity screams.

The old lady is frightened. 'Are you OK love?' she asks, and I nod. The carriage is now silent. No more more whispered conversations or jostling of papers. Now everyone stares at the soldier who screamed.

I get off at the next stop and find a bar. I don't get the job, I swallow whisky instead of answering questions. The flashback is gone and I send my Doctor a text. We arrange to meet and I drink some more as a Puma kills from the sky.


BBC Documentary Wants Disabled Ppl Affected By Cuts

11/16/2010 02:51:00 pm BenefitScroungingScum 6 Comments

Katie Rice tel. 02087427852 is doing a BBC documentary about how the cuts are affecting disabled people and is looking for people who have already been affected by cuts to  benefits or care funding to take part in a programme so if you know of anyone who has sufferred cuts already and they would be willing to take part in the programme could you or them get in touch with katie please.


Lest We Forget - Monsters

11/11/2010 07:21:00 pm BenefitScroungingScum 5 Comments

Monsters  By Blood In The Sand

My camera hangs next to me, I can't bring myself to take a picture, so I stare and swallow hard, my fingers gripping the rifle slung from my shoulder as I stare some more. Other soldiers walk up to where I stand and no one speaks.

A slain monster lies in the sun. Eyes and teeth are scattered among festering wounds. The beast has seven legs and five faces. There is no giggling now, or bravado. There is only despair.

I cannot walk away, my boots wont move. I taste blood as I bite through my cheek and cigarettes are lit. Still no one speaks, our fear screams in silence and I want to run.

I pick out features of humanity. Fingers, ribs and toes. The bodies now as one, lumps of meat clinging to a spine. I walk away as the sky darkens and a naked soldier lies face down next to a road, his boots still laced.

My breathing is ragged as I look at him. I then glance back at the monster and I struggle to get air. Everywhere I look there are dead children. I close my eyes and spit out blood.

As we leave I cannot form words. I think of home and see my street littered with fallen soldiers. I look at a photo of my son, his eyes are shut and I imagine him dead and a sob escapes my lips.

Embarrassed I crawl into my hole. I watch the shells flash far away and listen to the dull thumps. I sit down and rock back and forth and I speak out loud... 'I don't want to die'


Lest We Forget

11/11/2010 10:24:00 am BenefitScroungingScum 8 Comments

Breakdown By Blood In The Sand 

Nine nine nine, the phone rings. 'Emergency which service do you require?' a female voice, metallic uncaring. Flashes in the night sky and I am there again.

'Fucking all of them, and make sure Plod has guns. I'm going to kill someone.'

Silence, then a cough. The woman composes herself and sighs.

'Hoax calls...' I cut her off mid sentence. 'Fuck you love, fuck this country, fuck the world. Tell them to bring guns.'

The television had shown troops in yellow swarming across a desert. Hazy green images, night vision. Tracer spiralled into the sky and my mind broke. My girl was 8 months pregnant. New life grew in her belly and children were dying again, because we are at war again.

I walked away from the news, out into the world and made a phone call. I couldn't breathe and my chest pounded. Small arms cracked in the distance, in my mind; then children ran past giggling. I screamed at them.

'Stand To'

They laughed some more and I ripped off my shirt. 'Fuck off... DO IT NOW' The kids ran and I fell to my knees. I didn't know what year it was and I thumped the tarmac to prove it wasn't sand. A cigarette and a moment to reflect, time to think.

An old lady wandered over. 'Are you OK love?' I shook my head and pushed the burning cigarette into my face. 'They're all dead' I started to laugh, got up and ran. Fear filled my veins, ice water. I found a bar.

Walking in unable to think straight. I must be dreaming. Kids are dying and folk are laughing, playing pool, drinking cold beer. What year is it? I ask a man and he laughs at me, they all do.

I am semi naked, burnt and frightened. I see a mans face, tattoos and anger. Fear becomes blurred and violence erupts. The pub is now silent and I am insane with terror. 'Where's my fucking weapon?' Blank faces, blue lights.

Two female Police officers ask to speak with me outside. I nod and allow them to handcuff me. Outside men are waiting, yellow jackets and flashing lights. I'm pushed into a wall and it hurts.

In the Police Station a Sergeant asks me my name, I ask him what year it is. He tells me to stop being a prick. I ask him again. His patience is worn and he tells his men to take me to a cell.

They want to take off my boots. I see a dead boy, one boot shredded. Dirty toe nails, thick black hair and no face.

'You're not having my boots'

A fist slams into the side of my head and my wrists are twisted against the cuffs. I scream and punches rain in. I cry out as I get beaten. On the floor now, kicks and more punches. I vomit and choke. Darkness comes.

I wake up, more fear. Panic now sets in, so I bang on the door. 'Shut up you dick' unseen voices taunt me, as I plead for water and my meds. I need the pills that stop the terror. 'Help me...'

I am given a cup of water. I beg the hand delivering it to call my Doctor, call my mum. I need my pills. Laughter and words are what I get 'Not so brave now are you?' I'm told to piss in my cell, so I fill the cup.

I bang at the door, again and again. Discipline, the will to go on, I still have this. The hatch drops and the Sergeant speaks 'I'm getting bored of you sunshine' I launch the piss at him, howling a war cry.

They leave me on the floor crying, broken. More fists and boots crashed in and I am ready to surrender, all fight now gone. I go inside my mind. I pick up a severed hand, cold and stiff. I wave it at the boy with no face and dirty toe nails. The car full of dead people has a flat tyre and I laugh. Who's going to change that?

Then I scream. Over and over. Men come in and walk out and still I scream. A woman holds my hand and I scream. My Doctor sits in the cell so I scream at him. As I shuffle out I look at the Desk Sergeant. I mouth a word at him and he looks to the floor, 'Soldier'


A message to us all from Casdok

11/10/2010 09:36:00 am BenefitScroungingScum 0 Comments

Dear Bendy Girl

I recently went to a fascinating talk given by Neil Coyle Director of Policy of the Disability Alliance (DA). Their aim is to break the link between poverty and disability.

Some of the talk was around the background of where we are now and how the Dynamic Benefits led to the creation in Government of the 21st Century Welfare and their principles.

As you know the ‘potential improvements’ to our benefit system include a Universal Credit – a one size fits all model. A savings generator rather than to transform people’s lives and tackle poverty.

No mention of support, genuine job opportunities, supporting employers, sustainable or even enough work etc etc (Statistics can be found here).

We are all in this together! Disabled people did not start in an equal position. Disabled people are twice as likely to live in poverty already.

The DA need real people to speak up before the total effect of changes has such a devastating impact – case studies are essential.
So Bendy Girl I sent Neil Coyle your The Broken of Britain (A collection of real life stories) website which he said was very useful and he would be happy to add something to the site when they launch the research on DLA. (Dont worry i will remind him!)
So if we could urge people to send you their personal stories it could help make a difference.

Neil also urged that we all of course work with local councillors and MPs to highlight the impact of the proposals.

ACT NOW has put together an Impact Assessment report regarding the proposed cuts in public spending on people with Autism.

Disability Now warns of hard times ahead.

And the Ouch message boards are bursting!

Draft letter you can adapt and send to your MP

  I recently went on a one day Campaigning course – here is a brief summary of my notes which may help anyone wanting to take any of these issues further.

Good campaigns run by local people can make make a difference.

You need to ensure your aims and objectives are clear and concise.
SMART - Specific, Measurable, Achievable, Realistic and Time-bound

Gather accurate information and evidence to support your case.
Examples include personal stories, questionnaires and surveys, good practice examples and relevant local or national statistics.

Timing is important, find out when to start influencing the decision makers.

Lobbying your local council. You can influence your council in a number of ways:
Contact your local Councillor. Use the Opposition. Use the Local Paper. Submit a Petition: Lobby the Leader, Executive and Cabinet, and use your local MP Locally and Nationally.

Use local media. When it works well, local media can be extremely useful in advertising your campaign to a wider audience. It can influence key decisions made by a range of people including, local councillors, MPs, business people and even help change public opinion.
It’s all in the first sentence – you need to sum up as much of your story in one sentence as possible and answer the questions: who, what, when, where, why and how. This is a great way to check if your story is news. If you can't sum it up concisely in a few lines of text, then perhaps it's not a news story.

Have a good sound bite. You can either put this in a quote in a press release. It can capture the imagination and get you more coverage and impact.

Letters to the editor. The letters to the editor pages are some of the best read pages in local papers. If you do send a letter, brief friends and colleagues so that when your letter is printed, they can respond and keep the story going. If the newspaper receives a number of letters on one issue, then it might prompt them to do a news item or a feature.
Phone-ins.These are the radio equivalent of letters to the editor.

Campaign stunts are effective way of getting media and public attention.
C and i will have to think of something! Any ideas?!
Hope all is going well Bendy Girl
Love Casdok xx


Behind The Scenes

11/08/2010 03:49:00 pm BenefitScroungingScum 30 Comments

I think I'm having a breakdown. Sounds dramatic doesn't it? To be frank, it feels rather dramatic too. I'm physically disabled and usually, aside from the psychological issues commonly found amongst those misdiagnosed as malingering attention seekers I don't usually have any significant mental health problems. But at the moment I do. 

I started to get more sick than usual a few weeks ago. Mid The Broken Of Britain launch I was hugely optimistic that for me personally, things were coming together on the work front and that the prospect of being able to work from home was a realistic one. A week of putting in the equivalent of full time hours, all work done either from my bed or lying on the sofa made it very obvious that it wasn't a realistic plan, although I am still hopeful about working part time from home. Fortunately I figured this out for myself before my friends had to intervene, but I've still had several stern lectures about how working from bed is not resting and one friend quite firmly informed me that if I did not stop he would be coming round and removing my laptop to enforce rest. I stopped. Vomiting and diaorrhea are difficult enough for all of us to deal with, but D&V for hours all night, every night tipped me over the edge. I could see the shock on my GP's face when I saw him last week even before he expressed his concern about the amounts of facial weakness and general rubbishness I was exhibiting. I have gastritis again, connective tissue disorders being one of the trigger causes. 

Despite tripling the dose of omeprazole I take the D&V has continued. So has the excruiciating upper abdominal pain. On the upside I do now have a really pretty collection of empty Gaviscon bottles, I'm swigging it straight from the bottle like a low class alcoholic and waiting to hear back from my GP about what to do next. I've had gastritis before and it's pretty horrible, but the additional impact of stress upon it is not pretty.

It would all be much easier without having to deal with the bureaucratic nonsense hidden from healthy people. The stress of my DLA reapplication is still hanging over me, my current award expires at the end of this month. This morning I phoned the DWP to see how things were progressing, as if the award is not renewed in time all my other benefits will be dramatically reduced until it is. DWP staff get a terrible press, but apart from 2 incidents which spring to mind I've always been treated kindly and respectfully in my dealings with them. I'd particularly like to thank Gemma for taking the time to check my claim this morning and to reassure me that it is with the decision maker so likely to be decided upon before my current award ends. She was also able to reassure me that there has been no request for additional information as I provided statements from my physiotherapist, my carer and my policeman friend as well as my GP's part of the form so a decision is likely to be made without my needing a medical.

I've had to avoid the continuing news about cuts to benefits, but yesterday it finally dawned on me that the reduction in Local Housing Allowance from 50% of average area rent to 30% of average area rent will put me at higher risk for homelessness than I'd previously thought. I'm very fortunate, I am educated and privileged and have friends who will not allow me to end up on the streets. Even with that security blanket I'm terrified. My current Local Housing Allowance is paid at £90.90 per week, and leaves me with approximately £80 rent shortfall to make up each month from my other benefits. If my calculations are correct, which I cannot bear to check as I want to believe I'm wrong, then my LHA will drop to £54.30 a week when the rate is changed to 30% of local rent. That will mean my rent shortfall increases from approximately £80 per month to nearly £250 per month. My need to be wrong on this is preventing me from confirming these details and I become hysterical every time I see Grant Shapps on TV insisting that it is wrong to pay £21, 000 a year in Housing Benefit.Whether or not it is wrong to do so is being used as a smokescreen to hide the true impact of the cuts to Housing Benefit.

Over the weekend I received a letter from 'Choose and Book' reminding me to make an appointment. Unfortunately I haven't received the first letter from C&B with a password and details so entered into one of those Kafkaesque bureaucratic nonsenses when I tried to phone for an appointment this morning. I spoke to C&B who informed me that without a password they couldn't make any appointment. I begged them to find a way around this, or to ask for an appointment to be made directly through my local hospital, but neither was possible. The only way I can make an appointment is to phone my GP's practice and they will have to provide the details of the password taking up their time and mine. Then I have to phone C&B back and will be able to make an appointment. Hopefully. As last time I tried to use C&B there were no available appointments, clinics or doctors and so I just gave up and threw the referral away. I'm tempted to do the same now but have no rheumatologist and desperately need specialist input as does my GP to deal with the current health problems. So, having already phoned my GP practice this morning to try and make an appointment I will have to waste more of their time chasing up this issue. The phone call with C&B left me shaking and exhausted. Were I elderly, or perhaps not diagnosed with anything and unsure if I really needed to see a specialist I would have given up and not bothered.

I have abandoned any hope of getting an appropriate wheelchair from the NHS. It is too difficult and a battle I have no energy to fight. Fortunately a fellow blogger is kindly putting together an application to the Motability Trust to see if I can get a power wheelchair or scooter from their charity. It feels like begging, and as my considerate friend applying for me knows only too well, I would never have been able to write such an application for myself.

Things are so dire that I have found myself considering approaching Social Services to ask for a support package. I was already terrified of Social Services having personal experience that there is no situation Social Services can't make vastly worse, so it is indicative of my current desperation that I would even consider it. I lost my care package when the local authority rationed care to critical and substantial only under the previous Labour government and given that care is set to be even more tightly rationed I know that even if I could deal with the trauma and stress that goes hand in hand with being assessed by Social Services I will not qualify for any support.

Of course, an appropriate wheelchair, a care package and less hassle in aquiring support from the NHS would all combine to make it more likely I could work from home. But, in this austere climate of cuts none of those things will happen, and like many disabled people who long to work I am pushed further away from that aspiration.

If assisted suicide were available in the UK I would be seriously considering that as an option. Not because I want to die, or because my medical condition is so disabling I can't bear to live with it, neither of which could be further from the truth. But purely and simply because the stress and fear of navigating the system during the Coalition's bonfire of the benefits is more than I can bear.

NB: For health reasons I am still not able to check/respond to my email properly. Apologies for the delay in replying. If anyone wishes to reproduce this post elsewhere please feel free to do so so long as there is a proper link back to this original blog.