A New Year's Message From The Broken Of Britain

12/31/2010 10:30:00 am BenefitScroungingScum 1 Comments

This year was not kind to people with disabilities. 2010 began with a steady trickle of horror stories about Employment Support Allowance introduced by the Labour government in 2008 as the replacement for Incapacity Benefit, thus creating a draconian system making benefits conditional on work-related activity for most claimants. This conditionality is based on assessment by ‘healthcare professionals’ who are not doctors and may not be familiar with the variety of health conditions they face. The assessment is run by private sector provider Atos, who refuse to release the details of the test used to assess eligibility for reasons of ‘commercial interest’. There followed more disability charities lining their own pockets by colluding in the unfair system rather than fighting for those they claim to represent; and continuing doubts regarding the future of Disability Living Allowance (DLA) paid to help disabled people face the additional costs of disability.

Labour eventually backed away from DLA, and disabled people sighed with relief. Past Tory zeal for chopping at the welfare state and the Tory papers’ penchant for calling disabled people cheats has not befriended the party to us, but the Coalition Government was not totally objectionable. After all, David Cameron has experience of disability in his family, the Tories made an election promise to safeguard DLA, and the Lib Dems were not a party of unfair and discriminatory cuts. Early statements and the news of big changes to come caused some unease, but the first real signal of the Government’s intention came in the Emergency Budget, with George Osborne’s announcement of unnecessary medical tests for DLA claimants.

Since June, news of substantial losses for disabled people has come thick and fast. The axing of disability bodies doing useful and necessary work in the cull of quangos; a Comprehensive Spending Review which removed the mobility component of DLA from those in residential care to much anger; time-limiting contribution-based Employment and Support Allowance to 12 months in the same review; the cutting of advice on benefits; the fudged Harrington review of Employment Support Allowance which avoided the major points of criticism; the three-year extension of a contract worth over £100 million per year to Atos; all whilst disability charities continued to cheerfully pick the carcass of the welfare state. Then came the straw that broke the camel’s back – the Government decided to scrap DLA and replace it with a new, leaner system called Personal Independence Payment (PIP) - the public consultation n DLA reformcloses on February 14th. PIP will cut the DLA caseload by 20% using testing similar to that used for Employment and Support Allowance. The case for reform is badly flawed and there are several damaging changes hidden in the small print. For example, six-times London Marathon winner Baroness Tanni Grey-Thompson could lose out because she uses her wheelchair too well.

The Coalition Government has heaped misery on disabled people in just six months, backed up by their tabloid attack dogs, targeting them more than anybody else. A week after breaking the camel’s back, the Coalition decided to bash its head into the sand by axing the Independent Living Fund. This money funds 21,000 people to live independently who would otherwise live in hospitals or residential care, at far greater economic and social cost. Maria Miller, Minister for Disabled People, justifies the decision by deeming the ILF to be “unsustainable”. On a personal note, my best friend relies on ILF to support her care needs. ILF enables her to live independently and employ her high skills. Her contribution to society, including the tax she pays, is enormous. I suggest the Minister try telling her that her support is “financially unsustainable”.

By targeting DLA and the Independent Living Fund the Coalition have gone too far. A number of new disability rights groups and websites have responded to the proposals with focus and determination and are organizing alternative protest and direct action. Whilst the disability charities busy themselves forming consortia worth £654 million to bid for Government back-to-work contracts, protesting for disability rights is coming from the grassroots using our skills to raise awareness of our fights and to build political alliances. Public sector workers have been unfairly targeted as well; students too are victims of cuts and broken promises; these and other Coalition targets are our natural allies. We are campaigning on many fronts and ask that you join us in doing so by signing our petition to stop DLA reform and supporting our DLA campaign, as have a number of Lords and MPs including Jon Cruddas and Hywel Williams. We are getting MPs to ask questions, start debates and table Early Day Motions on DLA, pressuring the Coalition to back down.

2011 will be a good year for disabled people as we petition this Government to withdraw on DLA and the Independent Living Fund, and to bring fairness back into Employment Support Allowance. David Cameron and Iain Duncan-Smith have picked the wrong fight.

- by Kaliya Franklin and Rhydian Fôn James

Bog Off - Exhibit 31 A Second Starbucks Sorry?

12/29/2010 11:28:00 am BenefitScroungingScum 4 Comments

The only way I could describe this Bog Off found in the Liverpool One Starbucks was to say "It's minging. Oh and a bit rank too." Deeply disappointing after such high hopes of Starbucks. 


Back in October my friend @trufflepotamus was refused entry to a disabled toilet in a Norwich Starbucks as she wasn't in a wheelchair. As soon as Starbucks were tweeted this information they responsed promptly with an apology, investigation and staff retraining. We were impressed and yesterday Truffle and I had a tweet up in Liverpool One to enjoy the free coffee Starbucks gave us as an apology. 


To be fair, I did enjoy my coffee, well caramel hot chocolate actually. It was delicious. But I made the mistake of going to the toilet before I'd finished my drink, after which it just didn't taste so good. The toilet was so disgusting, I felt sick.  Having worked in restaurants I know only too well that the state of the toilets is a good general indicator of the condition of the food preparing facilities and hand hygeine of the staff. This toilet was so smelly and disgusting that I had to have a bath when I got home as I still felt contaminated. There were urine soaked tissues behind the cistern, urine splashed across the seat and thick dust coating the grab rails indicating a long term lack of cleaning rather than the more forgivable overwhelmed by the Christmas rush problem. 

Dark Blue toilet seat with visible urine splashes

The good points about the toilet rather got lost in fighting the urge to vomit the smell was so overpowering. Starbucks use constrasting blue grab rails which is great as they stand out easy to be seen. There were also two mirrors, one full length and one above the sink, at a good height for a wheelchair user. However the poor hygeine was so widespread I feared touching any of the grab rails, if the dust is that thick right next to the actual toilet then the germs must've been having an orgy. There was a help cord and it wasn't tied up, but it was too short to reach the floor and in a very awkward place. Frankly anyone unfortunate enough to end up needing to pull that cord for help would need a chemical decontamination unit after contact with anything in there, and new clothes as theirs would have been soaked with stranger's urine. 

Toilet with seat lifted and urine soaked toilet paper visible behind it

Sink with surrounding grab rails in contrasting dark blue and mirror above, too high to be visible from a wheelchair

Dark blue lower down grab rail directly adjacent to toilet, coated with a thick layer of dust

Full length mirror. Nappy bin obstructing access to sanitary dispoal bin from toilet area

Help cord adjacent to soiled toilet area, cord too short to be reached from floor

I am fortunate enough to be able to grab fistfulls of loo roll to lift up a toilet seat with, but others are not. It wouldn't have done them any good however as once lifted it was clear the cistern was equally generously coated with urine. Hovering over a soiled loo seat trying to pee while avoiding contact is difficult enough for the physically able but impossible for most disabled people...especially as the grab rails were too dirty to hold on to. 


The big question is not will Starbucks apologise for this smelly, sorrowful disabled toilet, but will they lead the way in improving their staff training and accessible facilities nationwide? I'm willing to drink alot of coffee to find out...


The managing director of Starbucks UK can be contacted via twitter


Update 03/01/2011 The following email was received from Starbucks on 31/12/2010

Our ref: 334909
 
31 December 2010
 
Dear BendyGirl

I have recently read your blog following your visit to the Liverpool One - Paradise Street Store and I am very sorry, and disappointed to hear about the appearance of the toilets.
 
We endeavour to provide a clean and comfortable environment that is accessible to all customers, in which you can relax and enjoy your favourite beverage, so we appreciate you bringing your concerns to our attention. 
 
I have shared your feedback with my district management team for their attention and investigation, to ensure no such situation arises in the future.  I have also instructed immediate deep cleaning in the store today to ensure the issues you have raised are addressed. 
 
I am sorry that you have had to bring this issue to our attention and I can assure you that your thoughts will be acted upon.  
 
I understand we have already tried to restore your faith in Starbucks once, however I hope we can continue to welcome you into our stores.  So that we can do this I would like to send you a Starbucks Card for you to continue to use in Starbucks. We have your address on file already please let me now if this is the right address to send it to
 
Once again, thank you very much for sharing your feedback with us and for giving us the opportunity to improve our operations.
 
Yours sincerely
 
Jane Coleman
Regional Director of Operations
 
 
 
 

A Moment In Time

12/24/2010 10:00:00 am BenefitScroungingScum 2 Comments

As it's Cripmas week I'm reposting some of the more heartwarming or humourous old blogs. Hope you enjoy them!

Originally posted 13/02/2009


These days we're all so busy, busy, busy that even close friends or family can take weeks to schedule a time when all parties are able to see each other. In amongst all that rushing around to meet appointments, targets, deadlines it's all too easy to focus so closely on our own lives that we forget to see anyone else's.

Since I was allocated my landline phone number I've been receiving lots of wrong numbers. I was distinctly unimpressed to be woken up early on Saturday morning by the phone, I couldn't get to it in time, didn't recognise the number but it still did a good job of preventing me going back to sleep. So, at first when I heard the quavering voice on the end of the phone my heart sank. I'd only been home about 10 minutes, I was tired, hungry and in fact so engrossed in something that I missed the first call she made.

The second time I got to the phone in time. She was already a bit confused was Auntie Betsy, she wanted to speak to her nephew Dave, was quite sure she'd phoned his number. This number. My number. With one eye on the clock I assured her this wasn't Dave's phone number, said goodbye and thought no more of it. Until she rang again just a moment later. More confused, and I could hear both the distress and shame in her voice as she told me she was in her 80's. That she'd once had a very responsible job you know...she just didn't know how she could manage to muddle up a few numbers so easily.

Once again I explained she had the wrong number, but this time tried to find out who she was looking for. She was calling from all the way across the country she said, would I know her? I explained that was unlikely, but that we'd get this sorted and I'd try the phone book to find her nephew.

Of course they were ex directory.

I live in a small area though and in some small ways community spirit is alive and well. So, it turned out I knew her nephew. Not well, he's a friend of a friend of a friend. But I knew enough to recognise who Aunty Betsy was looking for, and figured if I couldn't spare a few moments to help a confused old lady then what did that say about me as a human being.

Fortunately Aunty Betsy had the number for her nephew's mother, or so she said. I wasn't quite sure because that would've meant it was either her sister or sister-in-law (I think!) but still, I figured it was worth giving it a go. Otherwise I knew it would be possible to track down her nephew but it would mean multiple phone calls to different people to try and track down a number for the friend, to get the number of the friend of the friend.

The number was correct, and turned out to be for nephew Dave, with no mention of his mother. We said our hello's and I explained about Aunty Betsy being a bit puddled. Dave said he'd give her a call and apologised repeatedly. My phone number was previously Dave's phone number and Aunty Betsy must've just got them mixed up.

I called Aunty Betsy after I'd spoken to Dave to let her know that was the right phone number and to reassure her.

Later, alone in bed the thought of a confused old lady phoning and phoning a number she wasn't too sure about to try and speak to her nephew and wondering why he didn't answer her brought me to tears. What possible use are all our shiny gadgets and adrenaline packed lives if we can't find just a few moments in our days for everyone's Aunty Betsy? 

He Answers To Chuck

12/23/2010 10:00:00 am BenefitScroungingScum 0 Comments

This afternoon's bright sunshine drew me out of the house for an extended chocolate death walk. I pootled round my route, then bumped into Ziggy practicing staff outside his house. It was so glorious and such a pleasure to be out that I decided to do the actual chocolate bit of the death walk and set off for the garage arm in arm with Ziggy's girlfriend to buy an ice lolly.

On our way home, ice creams in a bag we saw an elderly gentleman coming towards us. Well dressed and with visible gold jewelery and watch but no coat something seemed amiss and as we reached the man he asked us for directions to the local police station. He stood in the road as he asked us, and told us of the men who had taken over his home and trapped his wife in it. He was quite confused and most insistent he just wanted to know how to get to the police station.

There is no police station in our town, and the next one is a couple of miles down the road, only manned part time so we insisted he could use my mobile phone to call, or that we would take him there if he wished. By this time we'd already established that although he knew his name, he didn't know where he lived, where he was or where he wanted to go and neither of us felt we could leave him stood confused and vulnerable on the side of the road.

I dialled 999 and was put through to the police, explaining the situation to the man in the control room. I stressed the vulnerability of the gentleman and how we'd found him just wandering and confused and asked for someone to come as soon as they could. Having given my name and address and established that the gentleman would come with us, I said that we would take him back to my house and make him a cup of tea whilst we waited for the police. Given the priority of the situation I was glad to hear someone would be out asap, but less glad to hear that it could be up to an hour.

We managed the few meters home and threw a very disgruntled cat out of the armchair so we could sit the old man down. Once sat with a cup of tea he seemed quite happy with both us and his surroundings, although still upset and concerned about the men in his house, and worried that he might get into trouble from the police. We reassured him frequently that no-one would be angry with him, and that the police would be only too glad to help him. Whilst we waited we asked the man about whether he had any children and if he knew their names hoping we could find a phone number for them. Although he could tell us his daughter's name and that she was married with children, he didn't know what her husband might be called so we could find out her married name, or where she lived. He was alternating between thinking he was still in Ireland and worried about getting back home to Hollywood.

He told us of how he met his wife during his national service and how they'd married just afterwards, her 19, he 20, frequently telling us that she had died just a few weeks or few days ago. It was obvious someone would be missing him and that as we'd given the police a name and description just kept reassuring him that someone would be here for him soon and not to worry about anyone being cross, they would just be glad to see him.

After 20 minutes or so the police phoned back, confirming the man's name and explaining he answered to Chuck. They'd found where he lived. As we thought from the man's description of undoing 4 locks and 'escaping', he was missing from a local nursing home. The person calling from the police explained that they had not been able to find a spare officer anywhere to attend the call, but they had spoken to the nursing home and someone would be round soon to collect him.

Shortly afterwards a van pulled up and a very anxious man knocked at the door explaining that his wife ran the nursing home and that they currently had builders in. This had obviously upset Chuck who thought they had taken over his home and his wife, and whilst tea was being prepared he had managed to slip out unnoticed. Chuck seemed perfectly happy to go with the man, albeit a bit confused by the white van he was to get in. Whilst Chuck was being helped into the van a car pulled up and a frantic looking woman arrived to explain she was the person in charge and what had happened.

Chuck lost his wife six months ago and had to move from his home to this area to be close to his daughter. Usually she visited him every day, but was on holiday at the moment and so Chuck was more confused than normal. She thanked us for taking care of him and we made sure to find out the name of the nursing home in case we found him again.

It was all just so sad.

Random Acts Of Bah Humbug

12/22/2010 03:13:00 pm BenefitScroungingScum 4 Comments

Dave may believe he invented Big Society innit but most of us have been quietly getting on with Big Societying for years in our own small ways. My Big Society moral of today is to buy more purple to insure against miserable old ladyhood...

After months of illness I finally felt well enough to have my flu jab so booked an appointment for this afternoon. The weather was kind and allowed me to get out of the front door and to the GP's surgery to engage in a constructive debate with the practice nurse about how the notes claim I've had a flu jab already this year. Fortunately we sorted it out and the injection was given without blood shed so I settled down to wait in reception for the standard post vaccination 'don't die on us' 15 minutes. 

I'd parked in the disabled bay when I arrived but not terribly well as I was aligning the driver's door with the gritted bits. My GP was off out on his visits and came back in laughing because I'd informed him on the way out that if I'd blocked him in he'd have to move my car. I handed over the keys, he moved the car and we all got back to the scheduled reception rowentertainment.

There was an old lady giving the receptionist a very hard time about her prescription...it wasn't at the doctor's surgery as she'd asked for it to be sent to the chemists...who denied all knowledge of it. Probably because the old lady was using a different pharmacy each time so no-one could keep track of where her prescriptions were ending up. It's cold, it's Christmas week and she was clearly distressed and distressing the receptionist so I offered to give her a lift to collect her prescription. Except several phone calls and some hysterical sobbing later we couldn't find the prescription at all. Throw in some very cross ranting to the mixture and Christmas goodwill was about the last thing that reception area was feeling. 

Finally after time for more hysterics, more phone calls, no prescription and trips to the loo we were all set and the old lady and I headed outside. I'd heeded the receptionists warning that the old lady was actually far more physically able than I am and managed to insist she get into the car herself, which was perfectly safe as it was all gritted. Surrounded by bags and ill humour which I was attempting to deflect with a rather fixed grin, I discovered my GP had pulled the handbrake on in proper man fashion so I couldn't even budge it and the grin turned into giggles at the pure vitriol emanating from the old ladies mouth as she dealt with this latest conspiracy against her. I had to go back inside and get the receptionist to come and take the handbrake off for me so we could leave. I'm sure my GP will be most amused by the note the receptionist left him instructing him to take more care with other people's handbrakes. 

Fortunately there was only one more set of tears* in the car and the air was a consoling blue by the time we made it to the old lady's ice rink back road. Of course she lived right at the end of it and wanted me to help her to the front door. I felt momentarily guilty co-opting the nice young man walking past with his dog to help the old lady as I couldn't warn him that she was likely to tear strips off him for his trouble, but then I remembered...it's the Big Society and we've all got to play our part...even if that part is being sworn at by a crotchety septegenarian. Actually, now I think about it...Dave is probably working on that bit of the Big Society himself this week..


*her tears not mine. Though trust me, I considered it just to get her to stop moaning!

Mac An Cheez Plz!

12/22/2010 10:00:00 am BenefitScroungingScum 1 Comments

 As it's Cripmas week I'm reposting some of the more heartwarming or humourous old blogs. Hope you enjoy them!

Originally posted 17/11/2008 

I have been healed! Yes, that's right, healed! Well, according to the person who ever so 'kindly' did the healing I have. Skeptical? You should be.

So, how did this miraculous healing event come about? Are you sitting comfortably? Then I'll begin...

A couple of weeks ago I met a friend of a friend, a delightful American lady. It turned out we shared some interests, including blogging and so we swapped details and became facebook friends. On Saturday I was invited to the lovely lady's home for dinner.

It was only when I arrived that I realised it was a dinner party. Having only met my new friend once previously I didn't know anyone, but my heart still sank when I first entered the kitchen and heard another guest earnestly describing how everywhere she lived was always haunted and what the various ghosts did. I mumbled something about preferring the rational and hypnagogic dreams when asked for my opinion but mainly kept my mouth shut, y'know being in someone else's home and all that. I tend to believe in the Voltaire misquote, "I disapprove of what you say, but will defend to the death your right to say it" and so I reminded myself of that and gritted my teeth and went to meet the other guests.

Without exception they were grolies, I was particularly mystified and revoltedimpressed by the earnest, white, middle class, male African drumming instructor. Quite what connection he had with Africa I never did elicit but he was into ghosts too. Unsurprising I suppose as ghost lady no.1 was his partner. The other guests were a yoga teacher and a man who defrauds people for a livingis a life coach. It was white, over privileged, upper middle class hell. And vegetarian. My teeth are yet to recover from so much grinding.

Dinner was lovely if you like lentils and tofu. I like chocolate, chips and burgers, but happily I'd brought chocolate with me, ostensibly for the hostess but I ate most of it afterinstead of dinner.

Having Ehlers Danlos Syndrome means my disability is pretty much invisible and it's not something I tend to bring up unless asked about it or most commonly, when I'm asked what I do for a living. I usually just say something about having a genetic disorder which makes my joints unstable and leave it at that so if people are interested they can ask. I had been asked the occupation question by several people and particularly Mr Life Coach(MLC), but after dinner the talk turned to healing.

I was struggling to get up from the sofa which was noticed by MLC who commented that I could 'probably do with some healing'. As it was kindly offered and I couldn't see a way to politely refuse I accepted thinking it couldn't do any harm.

So MLC suggested I get into a comfortable position on the sofa, put his hands on my hip and told me to put my hands together infront of me, in a sort of open handed prayer type posture. So far so not too awful I thought, but then he started to speak.

MLC instructed me to repeat after him something along the lines of, 'I have a problem, I want this problem to change, this problem will change' Again I thought, fair enough, the power of positive suggestion being particularly important in eliciting money from vulnerable peopleany kind of recovery. So when MLC first asked me what I had done wrong to cause this problem I didn't understand and just said 'well, I have a genetic disorder'. That wasn't the answer MLC was looking for though as he said it again, more emphatically. "What have you done wrong to cause this problem" Being slow to catch on I mumbled about genetics and DNA. "No" he said again, "What have you done wrong to cause this problem".

It was at that point I knew the only way out of the situation was to start making things up, but not before I'd had that momentary feeling of guilt for causing my own disability. Hmm, perhaps MLC went to the same school of communication as my old GP? Then MLC told me that his shaman was telling him off for not asking my full consent. I'm still not sure if his shaman heard my brain suggesting it fuck off, but I'm going to assume not. Especially as my more socially acceptable side told my mouth behave and give consent.

I managed to come up with a couple of reasons I'd brought a dislocating hip upon myself, though oddly having screwy collagen was no more acceptable a reason than genetics or DNA had been. Things like lacking self confidence and inner strength however were deemed as excellent reasons for my hip to dislocate. I have since told my hip, shoulder, jaw, rib, knee, take your pick joint, that it lacks self belief but, unsurprisingly my hip, shoulder, jaw, rib, knee, take your pick joint poo-poohed that idea and dislocated itself instead.

So, lacking in enough self confidence to leave I allowed the 'healing' to continue. It consisted of my having to come up with various reasons I'd brought this all upon myself, tapping 7 times on various parts of my body and 7 deep breaths in through the nose and out through the mouth. At the end of which I felt a bit lightheaded and therefore slow on the uptake when asked to rate my pain level between 1 and 10. Silly me, I had always assumed an honest answer was the only right answer to such a question. It took three repeats of emphasising my guilt, tapping and breathing to be told this would continue until the answer was 0. At which point my pain had a miraculous curing event and got itself down to a 0 pdq.

Not quick enough to avoid several more rounds of guilt stating, tapping and hyperventilating. 'What can I say?', I'm a slow learner. Especially when distracted by chocolate and the thought of proper painkilling drugs.

Eventually though, I was declared cured. Yes, really cured. Apparently all I had to do was keep repeating the exercise any time the pain or symptoms came back and they'd go away again. I'm not too sure what MLC made of me then dislocating my hip into the yoga teacher's hand to explain exactly what I meant by 'unstable joints'. Probably similar to the yoga teacher who emphasised people can never be too flexible and suggested I attend a class. MLC gave me his card and told me he would email the exercise to me.

I thanked MLC, because really, what else could I do in someone else's house, and it was a kind offer for a service that judging by his non environmentally friendly executive car, I assume usually costs quite alot of money. Fortunately the entire group then focused their energies upon changing the direction of the Californian fire by controlling the wind and so were distracted from my miraculous non healing healing event.*

I blame the 'healing' for my dislocating shoulder pulling the shower curtain, complete with metal pole onto my head the following morning. Concussion is a wonderful thing and certainly more real than this kind of 'healing' could ever be.

Next time I find myself in such a situation I plan to get incredibly drunk and explain sexual positions in explicit detail. Again. I find it ensures one never gets a second invitation, and hey, if it ever does it'll probably be a party worth attending.

*Yes really. D'you think I'm capable of making this stuff up?!

Lil Star

12/21/2010 01:11:00 pm BenefitScroungingScum 2 Comments

As it's Cripmas week I'm reposting some of the more heartwarming or humourous old blogs. Hope you enjoy them!

Originally posted 18/10/2007





I had one of those conversations today that makes you remember just how precious and short life really is. It was few years ago, soon after I met Big, that life became very difficult for me. Not long diagnosed I was very unwell and only just learning how to cope with EDS, my already difficult family situation broke down completely, and I was deeply in debt. As they have a habit of doing, things reached a breaking point where I simply didn't know how I was going to manage, I was so badly in debt I couldn't afford basics like food or heating, and in utter desperation I wrote asking for advice on a support group. Although lots of people read my post, only one or two replied, most I think not knowing what to say, and being intimidated by the situation I was in.

One person however went to huge lengths to help me. She spent hours tracking down an email address and then phone number for me, having realised from what I'd said just how close to breaking I really was. Later that same day she phoned me, this woman I'd never met, and never spoken to and spent hours on the phone, listening while I talked through how difficult things were and trying to find ways to help. She lived hundreds of miles away from me, but discovered her own parents lived within half an hours drive of me. Within days her elderly parents were at my house with a boot full of shopping they'd bought for me. She even gave me some of her own money, a very small amount, but at the time a fortune to me. She really is a Star this lady.

Over these past three years life has changed a great deal from the time I thought I wouldn't get through. Thanks to Star I found out I could get help with my debt problem and starting buying food instead of giving everything to the bank. I made sure that I paid it forward and when the opportunity arose I gave someone else in crisis a small amount of money just as had been done for me. I've managed to turn my life around, supported all the way by Star.

As my life has improved, things have gone steadily downhill for Star. She's been really poorly over the past couple of years. At first she had an appalling and disinterested GP who ignored her urgent symptoms for about 12 months, with that attitude so familiar to those of us with EDS, that there was nothing wrong, like she was still attention seeking despite her own diagnosis by world respected experts. Fortunately a new and excellent GP came along, and since that time Star has been cared for by the very best medical teams, although for months despite extensive tests none of the doctors had could find what was wrong, just knowing that she was very unwell and losing weight rapidly. Eventually they decided she had endocarditis, probably caused by some dental treatment a year or so previously when she'd not been given any prophylactic antibiotics. Star also has EDS, and like many people with EDS has mitral valve prolapse, usually nothing much to worry about but she's been unlucky. Star remained in hospital for months, being treated with all different kinds of antibiotics as she had various allergic reactions and still not getting better. Eventually the doctors decided that the infection in her heart couldn't be the primary infection as she just wasn't getting better and finally found out she had biliary sepsis. They suspect this has been caused by the internal laxity of her bile ducts. After months of IV antibiotic treatment Star was well enough to have an operation to put a tube into her stomach so that she'd be fed through a peg tube at night and could go home.

Star had just been told that she might need a liver transplant when she was diagnosed with breast cancer.

She's had her mastectomy and come through that much better than anyone expected. Today she read me the letters her doctors have copied her into putting the situation into black and white. The cancer had already spread to 4 out of the 9 lymph glands they biopsied. It is not responsive to Herceptin or any hormonal kind of treatments. She has a 31% chance of survival in 10 years, which increases to 54% if she has chemotherapy. Problem is that she is already so unwell that chemotherapy may well kill her. So could the biliary sepsis mind.

There is a plan in place, proving how superb the NHS can be when it works well, teams of consultants at different hospitals working together to plan an attempt to manage chemotherapy and treatment for biliary sepsis at the same time, organising plans for A&E admission via ambulance and immediate transfer to specialist hospital should her temperature rise by a degree and not drop within an hour. Professors talking to each other in an attempts to find some method of treatment that may help. There is, not surprisingly, no precedent to be found for giving chemotherapy to a patient with EDS, a peg tube and existing biliary sepsis.

Star is 47. Her youngest children are 13 and 16. Today we talked about whether she would see Christmas.

Life really is too short, we all know that, but I know that if I can live mine taking a leaf out of Star's book, always going that extra distance to help others, paying it forward, with a wicked laugh and a potty mouth, well, then it'll be a life lived half as well as hers has been so far.

The 12 Days Of Cripmas

12/20/2010 01:00:00 pm BenefitScroungingScum 7 Comments

The 12 Days Of Cripmas is a topical take of a classic carol listing the benefits and services currently being removed from disabled people in Britain. The lyrics were written by a user of the Ouch messageboards, sent to Where's The Benefit and the track produced and directed by BendyGirl of The Broken Of Britain. We're all incredibly proud of Imana our 11 yr old singing star who's mum has Multiple Sclerosis.

Happy Christmas to you from all of us at The Broken Of Britain and Where's The Benefit 







Please share this track everywhere and let's see if we can get it some national media attention!

URGENT - e-mail MP with casting vote on housing benefit changes

12/20/2010 11:41:00 am BenefitScroungingScum 1 Comments

URGENT - e-mail MP with casting vote on housing benefit changes

Disabled People Against Cuts are calling for urgent action today to prevent changes to Housing Benefit that will push disabled people further into poverty. The group, which organised last week's protest, is calling for us to e-mail MP Stephen Lloyd. He has the casting vote today on changes to housing benefits that could disproporiately affect disabled people. The government is trying to sneak these changes through with as little debate as possible.

Details and advice on what to say in your e-mail are at DPAC's page here - the address for his office is office@eastbournelibdems.org.uk. They suggest that we just write a short e-mail reminding Mr Lloyd that this could lead to more and more disabled people living in extreme poverty, having to be housed in temporary/unsuitable accommodation, or in care homes. It might be worth mentioning to him that we appreciate his vote against the tuition fee rise, and that we hope he'll show us the same bold support.

They'd also like us to e-mail Steve Webb, a Lib Dem DWP minister who has said that disabled people have too much money and therefore we do not need winter fuel allowance. This is not only an attack based on misinformation, but it also goes against the Lib Dem's pre-election policies. They promised us Winter Fuel Allowance. Given that they now can't keep that promise, they've U-turned with a cruel, damaging statement that chimes in nicely with the coalition's wider attack on disabled people. We can't stand for it. I'll be e-mailing Steve Webb today to tell him what I think - steve@stevewebb.org.uk.

The more of us that do this, the better. Protesting can happen from home, too.

System "not acceptable", says Prime Minister

12/20/2010 07:00:00 am BenefitScroungingScum 0 Comments

System "not acceptable", says Prime Minister

In the last few months we have seen an onslaught of cuts, reforms, and changes in every aspect of our society. Disabled people have borne the particular brunt as in many cases, the schemes and funding being withdrawn from us is not so much about quality of life, as about the absolute basics of life.

Taxicard schemes are being axed, making essential journeys around town prohibitively expensive for disabled people who cannot drive or use buses. Access to Work faces severe restrictions, making it more difficult for us to enter or continue in employment. Mobility Allowance is being withdrawn from people who live in care homes which in some cases means there's no funding for wheelchairs.

But now, finally, a topic has been breached where Prime Minister David Cameron feels strongly enough to speak out. He has boldly gone on the record as stating that certain current recently-reformed arrangements devised for minimising fraud and ensuring the proper expenditure of public money are "not acceptable." He has said that he recognises that the system has "caused a lot of pain and difficulty" and has pledged to make changes to rectify this.

Given some of the cuts we've heard about, what pain, what difficulty, what kind of travesty would cause the Prime Minister to speak out like this? Is it the introduction of a new "extra-critical" eligibility threshold for Social Services assistance in Birmingham? The way the Independent Living Fund has been closed to new applicants and is set to shut down altogether in the next five years? The fact that even the creator of ESA believes that the test is not fit for purpose?

Don't be silly. It's the Independent Parliamentary Standards Authority (IPSA) who oversee MP's expenses. Prior to these changes, MPs were allowed to self-certify their expenses, with results that we all remember well. Now, there are increased restrictions on the sorts of things that may be claimed for, and a single standardised system for submitting claims.

The National Audit Office (NAO) have stated that £13.9 million of expenses claims have not been validated because they were unable to inspect any supporting documentation. A familiar refrain is that MPs (and, presumably, their secretaries) are finding the claims process too difficult. This article from June has an absolutely beautiful collection of whinging hyperbole from MPs who have surely never seen the administrative tangle that the average disabled person is expected to efficiently handle.

At least Mr Cameron and his colleagues are clear where their priorities lie.


With thanks to Mary for this guest post

The Death Of The Independant Living Fund

12/14/2010 10:19:00 am BenefitScroungingScum 3 Comments

A Guest Blog reproduced with kind permission of the author, Fighting Monsters

Yesterday was quite a day for adult social services. As well as the more obvious announcements of the cuts to local authorities and the unveiling of a so-called ‘Localism Bill’, Maria Miller, the minister for disabled people announced that the ILF (Independent Living Fund) would be ‘financially unsustainable’ after 2015.

Financially unsustainable.  It didn’t need a whole lot of foresight to see this coming. Back in June, the ILF was closed to new applicants after running out of money – so the budget for this year lasted between April (when applications opened) until June (when they closed).

Community Care writes that

Miller said that the ILF would stay in place to fund existing users until the end of this parliament in 2015.
Its payments would most likely be transferred to councils to administer as part of personal budgets, though Miller’s statement does not specify whether funding would be protected at existing levels after 2015. 

And so it starts, the shaking off of responsibility of central government to provide additional support for disabled adults and the move of the responsibility for the additional funding to local authorities.

There are a few things that it is important to bear in mind at this point. The ILF is only or has been only accessed by people who are most disabled and have the absolute highest care needs. It was set up in 1988 although the rules regarding eligibility were reviewed in 1993. The purpose of the ILF was, as it’s name suggests, to maintain and allow for people with high care needs to remain living independently in the community rather than the alternative which was and is residential care.

The current rules state that someone is eligible for ILF funding when input from a local authority reaches a current level of £340 per week, the ILF funding will match that amount that the local authority on a pound for pound basis.

In my current incarnation, I don’t come across people who have ILF payments frequently – it has, like DLA only been available for people between 18-65 and over 65s can only claim if they had an existing award prior to their 65th birthday.

In the past though, particularly when I was in a generic adult social services team, I had a number of dealings with the ILF. On a personal level as well, my father received money via ILF.

It’s worth remembering that the model for ILF payments in 1988 was revolutionary and one that has and continues to have a major impact on the progression of adult social care. The ILF gave the money for the first time, directly to the disabled adult to choose their own service providers and/or employ their own PA (personal assistant). The Independent Living Fund was very much the forerunner of the direct payment/personal budget progression and the model for both monitoring and extending budgets directly to adults with social care needs themselves was trailblazed by the ILF.

The money provided by the ILF had, of course, guidelines attached regarding what it could be used for but it was money given in addition to the very bare needs met by local authorities. It was and is money that contributes to providing a better quality of life for people with high level needs because, believe me, you don’t get to £340 per week level of needs if you don’t have very high level of support needs.

The difference that the ILF money made was for a carer to accompany a service user to the local shops rather than go out and do the shopping for them. It was the difference that allowed a carer to take a service user to the local swimming pool rather than relying solely on day centre services. There is no doubt in my mind that ILF money contributes precisely to quality of life differences rather than the life or death care that local authorities provided.  These are the examples that are often given for ‘care planning’ with personal budgets provided by the local authority – the difference is the amount of money that you have in the ‘pot’ and the potential doubling that happened when the ILF contributed – acknowledging that those with very high care needs had.. well.. the need for care over and above the bare minimum to retain a positive quality of life living at home rather than in a residential setting.

This is my main sadness is seeing its demise. It’s hard to stomach for the government but quality support and quality of life costs more money. Yes, the money has to come from somewhere but it shouldn’t  be a ‘burden’ . We, as a society,  should be prepared to pay the cost of it.

I know exactly what will happen when Maria Miller shifts the burden of cost of care back to the local authorities – the levels of care provided will fall through the floor and although  for some people (those currently in receipt) that money may well be protected for a period of time,  for those coming up through the ‘system’ who don’t have access to this additional support, it will create a group of people who may be living at home but on whose family the burden of care may well fall more heavily – removing the independent from the idea of independent living and replacing ‘living’ with ‘existing’.

As Lord Morris is quoted as saying by the BBC

“This will not save money. If you make it harder for disabled people to live at home, it will cost more because more of them will have to be in hospitals and other places of full-time care.
“It will mean far more of them having to be in institutional care at far greater cost to the taxpayer.”

It’s so horrifically ironic that as policies shoot away into the distance taking the goal of ‘personalisation’ as a mantra, that the very first forerunner  of that policy  which was revolutionary at the time – is being put down with no evidence that there will be any central government funding to replace it.

That’s not to say that the idea of the ILF needed to stay the same. I have no doubt it needed to develop – not least because I felt the age limits were at best arbitrary and at worse discriminatory -  but by pushing the burden back to increasingly pressed local authorities the government has alerted us to its real intentions about the cost-saving implications of the move towards personal budgets.

Benefits - a lifestyle choice?

12/10/2010 12:20:00 pm BenefitScroungingScum 2 Comments

Great film from Poverty Alliance

Sample Letter To Send To Maria Miller About DLA Reform

12/10/2010 11:56:00 am BenefitScroungingScum 0 Comments

Rhydian Fon James who authored yesterday's Demolition of the case for DLA reform has also written an excellent letter which can be used as a template to send to Maria Miller and your own MP. We suggest emailing a copy and also printing out a copy to post as some MP's don't respond to emails. Please write to your MP and to Maria Miller, Minister for Disabled People, especially if you are 'not yet disabled' and wondering what you can do to support the 'already disabled'.

Demolition Of The Case For DLA Reform

12/09/2010 01:30:00 pm BenefitScroungingScum 4 Comments

Maria Miller, Minister for Disabled People, should immediately recall the Public Consultation on Disability Living Allowance (DLA) reform, and cease work on reform of this benefit. This should be done because the reasons given for DLA reform are not robust, with little evidence to support the case for reform and, importantly, no independent academic research. The use of the word ‘little’ refers to the two pieces of internal DWP papers used as evidence to build the entire case for reform – a footnote for one reference appears twice on consecutive pages. Thus the case for reform falls apart upon even cursory examination. As such, the consultation questions are deeply skewed and any answers will be likely to support wholesale reform. This is both unfair and unwise, and will cause hardship for many disabled people.

The wildest claim to support reform is that ‘evidence suggests that DLA can also act as a barrier to work’. This passage is footnoted, referring to “Disability Living Allowance and work: Exploratory research and evidence review, 2010, DWP Research Report No. 648” (RR No.648). This report also finds that “he main factor affecting the employment rates of disabled people is their disability or health condition” and that “a larger than average proportion of DLA recipients also appears to be affected by the specific types of impairment that carry the greatest employment disadvantage for disabled people” – yet these findings are not reported in the consultation paper, thus skewing discussion.

In fact, though the report claims that there exists a “perception of disability permanently precluding work is prevalent among individuals with disabilities not already in employment”, there is no evidence cited in the report that suggests DLA could be a barrier to work. The section and all references to it in the consultation paper could be interpreted as an attempt to misdirect, and should be removed forthwith. Further, it should be noted that the consultation commits the statistical crime of confusing correlation with causation. Whilst RR No. 648 does provide evidence that low employment is correlated with claiming of DLA, this in no way implies that one causes the other.

It could be suggested that the lack of evidence pointing to a need for reform has meant that misdirection was used in an attempt to convince the public that DLA reform is necessary. In particular, the graphs presented as Figure 1 and 2, on page 8 of the consultation paper, used to show the DLA caseload increasing at an alarming rate, are flawed in many ways, not least in the fact that no baseline is established for when take-up of DLA by people with disabilities plateaued after its introduction in 1992/93. There are further issues regarding the number of Pensioners as the report ignores demographic trends to show that there is a dramatic increase in claims by people over State Pension age. This is particularly questionable since a Pensioners’ eligibility for DLA would usually depend on their receipt of DLA prior to this – otherwise, they would be eligible for Attendance Allowance. This is not made explicit in the consultation paper.

Figure 2 is also misleading as it could be read carelessly as showing that 8% of the population claim DLA. I am loath to interpret this as intentional misdirection but it is, at the very least, a sloppy drawing of graphs. Another example of sloppiness is the first sentence of paragraph 15 of the first chapter, on page 7 of the consultation paper, reading “In just eight years, the numbers receiving DLA has increased by 30 per cent.” This sentence is utterly meaningless and a misuse of statistics although, once again, I do not wish to interpret this negatively. Yet another example of the spurious use of statistics is Table 1 on Page 9 which presents the “Distribution of current caseload by rate combination”. This table appears between two paragraphs – 16 and 17 – arguing that the current system is too complex and the benefit is not understood. This is an odd, and potentially misleading, place for this data to be displayed.

Beyond misuse of statistics, sloppy presentation of data and lack of evidence, there are further points to be queried. Whilst RR No. 648 does give evidence that DLA is complex and not understood by all claimants, as suggested in paragraph 19 on page 10, this is surely grounds for improving the current system rather than expensively replacing it with an entirely new one. Likewise the assertion, in paragraph 18 of page 9, that there is no system to check that rewards remain correct. The statement that “Two-thirds of people currently on DLA have an indefinite award, which means that their award may continue for life without ever being checked to see if it still reflects their needs” is a rhetorical tautology. Indefinite awards are given to claimants with conditions that will not improve. Whilst it is not unreasonable that medical advances in the treatment of a certain condition should prompt re-evaluation of those cases, this could be achieved by augmenting DLA rather than replacing it.

The core argument of the consultation paper is that DLA is a benefit not fit for purpose. Paragraph 9 on page 6 of the consultation paper states that: “DLA is a benefit that provides a cash contribution towards the extra costs of needs arising from an impairment or health condition.” The arguments presented in paragraphs 14 and 15 of page 8, claiming that the benefit is not fit for purpose, do not touch upon the original purpose of DLA or offer any argument as to why it is failing to meet its original purpose. The information presented is that the DLA caseload and expenditure is a “lot more than was originally expected” and the aforementioned misuse of statistics on the increase in DLA claims. No arguments are presented as to why this means that DLA is not fit for purpose. The only way an argument can be construed is to look at the issue with a preconceived idea that there is an acceptable level of DLA claims prior to evaluating the health and impairment of claimants.

Finally, paragraph 2 betrays this preconception by stating: “We believe that now is the right time to reform DLA”, yet offers no qualification or reasoning for this belief. Paragraph 3 continues by saying that: “We must ensure that our resources are focused on those with the greatest need”, with no qualification or definition of the term “greatest need”. This could be pointed to as a suggestion that those with “lesser needs” will have to struggle unsupported with their impairment, and that the definition of needs is at the whim of the Secretary of State for Work and Pensions.

The arguments above demolish the case for reform presented in the consultation paper, dealing with each point made in the consultation paper. It raises serious questions about the competence of the Minister responsible and the Secretary of State that a consultation paper for reform has been based on such a shocking lack of evidence, preconceptions about benefit claims and abuse of accepted statistical methodology.



Rhydian Fôn James (mathematician and economist)

NB: This is a guest blog written by Rhydian not BendyGirl (who can't add up!) 

Officially Not Such Positive Behaviour

12/08/2010 07:34:00 pm BenefitScroungingScum 2 Comments

Stephen Neary is 20 years old, and needs your help. He is detained against his will, and that of his father with whom he previously lived.

Stephen has autism, and went into respite a year ago whilst his father recovered from the flu. A 3 day placement has turned into a year long nightmare, after he was transferred from a respite centre he was familiar with because staff could not cope with his behaviour caused by the distress of family seperation. Now detained under the mental capacity act in a positive behaviour unit, and due to undergo a hearing at the court of protection where the local authority want to assume guardianship, Stephen has no voice, no rights. He was seen as dangerous simply because he taps people on the shoulder to attract attention. A habit seen as assault, and causing Stephen to be detained. Learning disabled instead of mentally ill Stephen cannot use the tribunal process under the mental health act. He can be assessed for capacity, but this is paid for by the local authority, the very people who want to assume responsibility for his welfare.

If Stephen belonged to an ethnic minority, and was detained on those grounds, rightly there would be an outcry. Stephen is disabled however so somehow its seen as not newsworthy, not important, and by most probably not wrong. However it should be newsworthy, it is important, and it is wrong. Stephen has rights to the best possible quality of life, and as far as possible to make choices with the necessary support, but he is being denied this. Instead he is locked away not for wrongdoing, but because his needs were misunderstood. A misunderstanding that has led to Stephen being parted from his family, and his secure, and familiar life. Familiar routine and security help people like Stephen thrive, yet he has been denied this.

Soon it will be to late to publicise this story, not allowed under Court Of Protection procedure, to protect his privacy. Stephen does not need privacy, he needs us to shout so that he can get the care he needs and wants. His name must become as familiar as your own we cannot forget him, we cannot allow Stephen Neary to ‘rot’ in an inappropriate placement,
This is Stephen’s story, but it could be the story of any one of us, any disabled person, or someone who challenges the system, anyone who it is easier to lock up than support. We must act to save Stephen, and those who would follow before its so common that we are no longer shocked.

Crimson agrees to this piece being shared in the fight to save Stephen, and others like him, as long as it is credited appropristely.

Reposted with kind thanks to The Crimson Crip 

The Broken Of Britian Response To DLA Reform Consultation

12/07/2010 10:00:00 am BenefitScroungingScum 13 Comments