Open Letter In The Guardian

2/25/2011 11:39:00 am BenefitScroungingScum 2 Comments


The government's implementation of welfare reform is destroying the covenant of care between disabled people and the welfare state (Report, 23 February). The most vulnerable people in our country are being subjected to cruelty. The work capability assessment is not fit for purpose. It is denying employment support allowance to those whom the 2007 Welfare Reform Act deemed it not reasonable to require to work.

The assessment lacks public and medical accountability. Criteria about what constitutes an "illness" and a "disability" have been increasingly narrowed over the years into a set of descriptors that fail to recognise the complex problems and needs of those who are mentally ill, or who have intermittent illnesses or communicative conditions.

We want a system that is flexible and supportive of disabled people and which helps people into good, appropriate jobs with decent wages. One that values and supports those who are unable to work, and that insures us all against the misfortunes of illness and disability.

Jon Cruddas MP Labour, Dagenham & Rainham, Neil Coyle Director of policy, Disability Alliance, Anna Healy Labour, House of Lords, Gavin Hayes General secretary, Compass, Professor Jonathan Rutherford Middlesex University, Professor Peter Beresford Brunel University, Steve Griffiths Researcher and Consultant, Rhydian Fôn James The Broken of Britain, Frances Kelly, Rosemary O'Neil Carerwatch, Alison Wiles, Anna Kennedy, Carole Rutherford co-founders, Act Now -


Petition To Halt Closure Of 5 Wirral Respite Care Homes

2/23/2011 11:40:00 am BenefitScroungingScum 0 Comments

Please could all my readers sign this petition* to halt the closure of 5 respite care homes in Wirral, at least until staff, carers and cared for have been properly consulted and advised about alternatives.

*Yes, I know the petition site is a nightmare, sorry! Please, please sign anyway.


False Economy - 50,000 NHS job losses

2/23/2011 11:27:00 am BenefitScroungingScum 1 Comments

Campaign Group False Economy formally launch today with the exclusive revelation that they have uncovered 50,000 NHS job losses.


The Welfare Reform Bill And Disability - By Rhydian Fon James

2/19/2011 11:24:00 am BenefitScroungingScum 10 Comments

The Welfare Reform Bill (Bill 154) was unveiled by David Cameron yesterday, after being introduced in the House of Commons on Wednesday, 16th of February 2011. The Bill is quite controversial, and will provoke varying reactions depending on your political leanings. The Broken of Britain will not get involved in the general provisions of the Bill – as a non-party political group this is beyond our mandate, whatever individual members of the group may say in a personal capacity. However, provisions that affect disabled people are, most certainly, our business. Below is an analysis of the Bill and disability.

Part 1 of the Bill contains provisions and confers regulation-making powers for the new Universal Credit. Universal credit will be paid to people both in and out of work, replacing working tax credit, child tax credit, housing benefit, council tax benefit, IS, income- based JSA and income-related ESA. The stated aim of universal credit is to smooth the transition into work by reducing the support a person receives at a consistent rate as their earnings increase. The financial support provided by universal credit will be underpinned by responsibilities which claimants may be required to meet.

Clause 4 sets out the basic conditions for entitlement, including that the claimant must accept a claimant commitment which contains the requirements that a claimant will be expected to meet in return for receiving universal credit. These requirements are set out in clauses 13 to 28 – no work-related requirements if the claimant has limited capability for work-related activity, work preparation if the claimant is found to have limited capability for work, and claimants subject to work search and availability requirements otherwise, with Clause 26 setting out harsh sanction for failure to meet any of these requirements. Subsection (1)(b) of Clause 6 prevents a person from being entitled to universal credit if they only meet the conditions of entitlement for a short period, to be prescribed in regulations – this will increase the difficulty of getting out-of-work support where disability is acute.

Clause 11 provides for an amount to be included for housing costs. A person’s
maximum amount may include an amount for housing costs if the claimant is liable to
make payments on their home. This could be in the form of rent, mortgage costs or
other housing-related costs. Where the amount for housing relates to a liability to pay
rent, it is intended that the amount will be calculated with reference to a claimant’s
household size and circumstances as well as their actual rent, as is the case currently
in housing benefit. There are changes being made to housing benefit that will be harmful to disabled people, and we must block these to avoid them being carried over.

It is clear that the most effective way to make provision for disabled people in this Part of the Bill is to amend Clause 38 which provides powers relating to the determination of limited capability for work and limited capability for work-related activity owing to a physical or mental condition. A person’s capability for work may determine the work-related requirements which may be imposed. The intention is that the clause allows for the same provision as for ESA in sections 8 and 9 of Welfare Reform Act 2007.

Part 2 of the Bill makes provision for changes to the responsibilities of claimants of JSA, ESA and IS in the period leading up to the introduction of universal credit. In particular provision is made for the introduction of a claimant commitment, in the same way as in Part 1. The claimant commitment will be a record of the requirements claimants are expected to meet in order to receive benefit and the consequences should they fail to do so. Once the universal credit clauses have come into force, ESA and JSA will continue alongside universal credit as contributory benefits.

Clause 51 must be deleted, as it time-limits entitlement to contributory ESA to 365, even where the period of limited capability for work exceeds this period, though days during which a claimant is in the support group will not count towards the 365 days of entitlement.. In particular, this may plunge couples where one or both partners are disabled into poverty, as claimants will be subject to harsh means test after this period. Additionally, subsection (3)(a) provides that claimants who are already receiving contributory ESA when the time limit is introduced will have the period that they have already spent on the benefit counted towards their 365 days of entitlement. Clause 53 and Clause 56 must be amended as it provides for the same claimant commitment and responsibilities as in the Universal Credit, with the same flaws as discussed above.

As well as the changes to be made in the interim period this Part also introduces longer-term reforms to align ESA and JSA more closely with the provisions for universal credit. Clauses 49 and 56 insert new sections into the Jobseekers Act 1995 and the Welfare Reform Act 2007 which replicate those for universal credit which relate to work-related requirements and sanctions, apart from where small differences are necessary, so that what can be expected of a claimant of contributory JSA or ESA is the same as it would be for a similar claimant of universal credit.

Part 4 is the most interesting for disabled people, discussing the Personal Independence Payment, before the DLA reform consultation has closed! In June 2010 the Government announced, as part of the Emergency Budget, its intention to reform disability living allowance from 2013-14. Subsequently, in December 2010, a consultation paper Disability Living Allowance reform (Cm 7984) was published. The consultation paper sets out the Government’s proposals to replace disability living allowance with a personal independence payment. The provisions in Part 4 set out the framework for the new benefit, while the consultation responses will feed into the detailed design of the benefit which will be provided for in secondary legislation.

This Part of the Bill must be deleted in its entirety, for the reasons that The Broken of Britain is opposed to the Personal Independence Payment. Notwithstanding the facts that the DLA reform consultation was not closed when the Bill was published, that the consultation is deeply flawed, that there is no evidence that DLA reform is required, and that DLA reform will cause hardship for disabled people, the provisions for PIP are regressive. The reduction in the number of rates of PIP has been decided before the consultation ends, as has the decision to assess prescribed activities to determine awards, and the decision to require that a person be disabled for six months prior to claiming. It has also been decided that that if a claimant is an in-patient of a hospital or similar institution, or resident in a care home, and receives “qualifying services” (as defined in subsection (4)), which are paid for to any extent out of public or local funds, regulations may provide that no amount of the daily living or mobility components of personal independence payment is payable.

The Broken of Britain is exploring various avenues to ensure that the desired changes are made to the Bill, including the complete deletion of Part 4.


Death Threats - By Sue Marsh

2/18/2011 10:43:00 am BenefitScroungingScum 7 Comments

 Originally posted here

Laura is 29 years old. Until a few years ago, she was a vet, just qualified and looking forward to her future. She was engaged to Paul and they were planning their wedding. She lived a pretty "normal" life, in a "normal" home and enjoyed walking holidays and playing "cool auntie" with her young nieces and nephews.

Her wages had improved! Finally, after all those years of studying, she could afford the odd luxury. She and Paul treated themselves to a weekend away to Barcelona when she got her first "proper job" and soon after, she'd bought a lovely new car. 


For a while though, she'd been getting shooting pains in her hips and knees. crouching on concrete floors, treating sick animals, or hours in the cold and damp waiting for a new foal had become very uncomfortable. One day, she found she physically couldn't get up from the floor and had to wait for someone to come and help. 

She went to her GP a few times, but he didn't seem to think much was wrong. He suggested she take paracetamol for the pain and take it easy in the cold. 

She carried on doing her job, but it became harder and harder. Soon, getting out of bed took 5 or 10 minutes - her joints felt stiff and painful and she seemed constantly exhausted. She started to hobble a bit, embarrassed, but unable to help it. 

When she got in from work all she wanted to do was fall into bed. She took all the paracetamol she could and  even added in some ibruprofen, but things just got worse and worse. She never wanted to go out to dinner or have sex, walking holidays seemed unimaginable and she was always irritable with pain or exhaustion. Despite feeling exhausted all the time, she got less and less sleep. As the pain increased, she could no longer find any way of getting comfortable or relaxing. 

It took a year or so before her doctor referred her to a specialist. By then, she could barely walk, shuffling like an old lady. Her skin was pale with exhaustion, her hair was dull and the dark circles under her eyes made her look haunted. The consultant ran a few tests and then gave her the news that she had arthritis. What's more, it was a particularly virulent case of early onset disease. It was degenerative and her symptoms would only get worse. He told her there was no cure and the words rang in her ears. There were however treatments they could use that might slow the progress of the disease or even bring about remission. 

The first treatment made no difference at all. The second gave her debilitating, splitting headaches and the third (which she was warned carried a risk of brain tumours) made her vomit almost constantly. The consultant finally prescribed the strongest drug available to him and Laura had to learn to give herself injections in her tummy every two weeks to take the medication. For a while, the injections seemed to work, but then they just stopped. There was nothing else to try and she simply fought on through the pain, taking strong opiate painkillers when she couldn't bear it any more. 

She had to stop working. Her precious job, her animals, her ambitions and dreams all seemed to be slipping away. She applied for Employment Support Allowance ( ESA. Previously Incapacity Benefit) but was found  fit for work after a humiliating "assessment" where she was asked to touch her toes and climb some little wooden steps. 

Sadly, Paul couldn't cope. Life had changed so completely, he no longer recognised the woman he lived with. She wasn't happy-go-lucky or carefree any more and their romance slowly fell apart. In the end, he left her. Their home had to be sold and Laura found herself applying for housing benefit and renting a tiny one bed flat above a shop. The stairs were like a mountain now, so she rarely went anywhere at all any more. She found it increasingly hard to have a shower or cook a meal - her fingers were stiff and swollen with arthritis too by now and the local council were only able to provide care for a few hours twice a week. 

Her sisters couldn't care for her very much - they had busy lives of their own and she missed the kid's laughter and rolling around on the floor with them or playing tickles or chase. Suddenly she had so much time but nothing to fill it with. 

It seemed like every day she had to fill in another form or attend anther work programme, but at the same time, all she heard on the news was that most sick or disabled people were scroungers or skivers. She started to weep too often for her old life and had lost so much so quickly, that she struggled to deal with the barrage of emotions she felt. 

Where she used to be self-sufficient, now she was reliant, where she used to be energetic, now she was exhausted. Luxuries were forgotten and she worried about putting the heating on or buying food - after her rent had been paid, she only had just under £400 to pay for everything else.  

Sometimes she wondered what on earth had gone wrong? How had she gone from a vibrant, happy young woman with a whole life of plans ahead of her into this? 


For a few days there has been a debate over whether it is counter-productive to discuss the risk of rising suicide rates in the broader debate over cuts to sickness and disability benefits. Today, a passionate campaigner for disabled rights wrote this article for the Guardian. I agree with very much of what she says, but I don't agree that talk of suicide is being used in this debate as a tool or a threat. I think that given stories like Laura's it is a worrying possibility. This is a group of people just like Laura, who already face terrible challenges and I do believe some are unable to cope with the extra guilt and fear they also now face. 

I found the comments that followed the article depressing. So many seemed to think that stories of despair and hopelessness were exaggerated or that talk of ending one's life was some form of militancy used to blackmail the government with. 

Since I've started writing this blog, I've been shocked by how many sick or disabled people say they can't go on. Not dramatically, but matter-of-factly. Time and time again. At least weekly, I've heard from people in despair, unable to go through another assessment or take yet another cut in their already meagre lifestyles.

If people are wanting to debate with this shocking degree of candour, then I think we should all be listening. Few people wish to discuss suicide on a public forum and if they start to do so in significant numbers, I can only believe that alarm bells should be ringing. 

I discovered this week that no-one actually keeps statistics into how much more likely sick or disabled people are to end their own lives. One NHS document reports that it is a "significant risk factor" but the ONS confirmed to me that they had no studies at all on record. With this in mind, if suicide does increase amongst this vulnerable group, no-one will know. 

A full and frank debate needs to base itself on facts. Not hysteria or threats, but information. In searching for that information, some unpalatable subjects might turn up. But dismissing a debate about them is surely not a solution?

TODAY'S SIMPLE ACTION : This is a sensitive issue. Nonetheless I think it important to try to explain why people might feel so desperate. To understand the support we need, people must understand our lives. 
WILL YOU SEND THIS TO JUST ONE PERSON WHO ISN'T SICK OR DISABLED? Someone you trust to read it and try to understand? Either by email or twitter or facebook or by writing to you MP or local paper? We need to expand the debate and reach those who don't know much about these issues. As ever THANK YOU


Link To Welfare Reform Bill

2/17/2011 02:25:00 pm BenefitScroungingScum 1 Comments

The Welfare Reform Bill is available here for anyone who wishes to read it. And no, I haven't yet. Why's that? Oh the minor still being disabled thing as Sally Bercow points out here....


What Is The Big Society?

2/16/2011 03:36:00 pm BenefitScroungingScum 25 Comments

I have a confession to make. Some of you may already know this, but for those about to be shocked I can only apologise and beg you to forgive me.

I have a crush on David Cameron. I know, I know. In my defence it's not just him but part of an overall sex problem I have - I'm irresistibly attracted to floppy haired, public school, posh boys with their cut glass accents and raging arrogance. Which as defences go is pretty feeble I admit. Like I say, don't hate me. It's very disabling only being attracted to men who's politics you reject.

Except.. you know, I'm a bit of a Big Society fan. It seems it confuses most people, but the Big Society is one of those really simple yet fiendishly difficult to define concepts we'd all pretty much agree with if we could just pin it down a bit better. Big Society turned up at my door yesterday in the guise of a neighbour wanting a phone number, who left instructing me to just text her 'Bad Day' when I need a plate of food delivering to the door at teatime. Big Society is the 'meals on heels' team who all cook for me, it's that lovely Richard who pushed me home in the pouring rain when BendyBus broke down, and that Mike I just had a nice chat with down at The Bench about how to navigate the mazes of changes which threaten to drown you after a life changing medical event. Big Society is all about communities pulling together, strangers smiling at each other, and relationships developing.

But, once Housing Benefit is reduced I will have to pay more* from my other benefits to cover the increased rent shortfall. That's assuming I still receive those benefits, am not deemed fit for work by the work capability assessment and reassessed out of my entitlement to Disability Living Allowance in the drive to reduce overall eligibility. Any of those things would mean I'd have to attempt to relocate to a cheaper area, and the big society so well built in my immediate community would come tumbling down. My mini big society works because it is provided by people not in full time employment; stay at home mum's supported by their husbands, part time workers, those in receipt of benefits. It would take time to rebuild elsewhere and only works on such an immediate level when there are enough people at home during the day to provide it, so I'd have no choice but to approach the local authority to seek that support.  The cost in economic terms to the local authority, the NHS and central government would only pale in comparison to the human cost.

What Big Society is not and never will be is a replacement for state services. It can't provide wheelchairs to everyone, should not be providing personal care** support to anyone, and won't even steri strip the gaping wound caused by cutting such state services. Using it as a cover for such just cheapens something that we all know to be right and means I'm left even more disappointed by Dave than I am shamed of myself for fancying him in the first place.

Though I suspect I'm not the only one suffering from some self inflicted shame. Watch David Cameron every time a question about disability comes up. He doesn't just flush red on his neck like he does during PMQ's when someone scores a point, when the subject is disability he flushes red all the way up to his forehead and has the look of a man deeply troubled by his conscience. Because, give him his due, David Cameron seems genuinely and passionately committed to his Big Society and as a father was genuinely, passionately committed to the well being of his much loved late son Ivan. The increasing reports of families pushed beyond breaking point by the lack of state services feeling they have no choice but to place their children in vastly more expensive residential care must be a far more effective 3am wake up call than any crying baby.

*My current level of housing benefit is approximately £91 p/week
**personal care is help with activities such as washing, dressing, bathing or feeding.


An Open Letter To Maria Miller - By Sue Marsh

2/16/2011 12:18:00 pm BenefitScroungingScum 4 Comments

Dear Maria Miller,

Before I start, I have a small request. When you talk about "The Disabled" could you please add "The Sick" in there sometimes? Only, millions of people with long term illnesses often face the greatest barriers to work but are rarely mentioned, if considered at all.

You see, I first started lobbying ministers about ESA back in 2009 and was surprised to listen to a half hour speech by the then disabilities minister Jonathan Shaw that failed to mention illness once. Obviously with political and business will it is possible to modify workplaces to facilitate the lives of the blind or deaf or immobile in employment. It's just not so easy to modify for exhaustion or pain or vomiting. A few months later I met with Mr Shaw who made it clear that he didn't really know anything at all about the issues faced by those who are suffer from long term variable or degenerative conditions.

It seemed a little that way when you, Maria "answered" questions online at Guardian Money. Of 250 questions, you replied to 6, often with answers that were strangely irrelevant; you didn't seem sure whether the over 65s would be able to continue claiming DLA? You didn't seem to know which research your own department had based its conclusions on? I read your response to our little online chat this morning;

    Miller says she believes that the rising unease will settle once the full details of the proposed changes become clear and is convinced that much of the anger has been triggered by a failure to understand the government's objectives.
    "I often hear concerns that are based on a lack of detailed information of what we are talking about in terms of our reforms. People need to get the facts rather than speculation," she says. "The anxiety can often be based on the fact that we are dealing with very complex benefits. The government is going to reform and simplify the whole system."

Oh dear, dear, dear. This really isn't the way to go at all. I am a fairly moderate (and I like to think reasonable) campaigner, but I can already hear the howls of outrage from every corner of the UK as people read that their brains are now being called into question as well as their disabilities.

You see we don't have much else. We can't get about much, we might live in terrible pain or despair. We may have had to give up our hobbies or our dreams, but we like to think that we can still use our brains. We have little still available to us, but we can analyse, dissect and appraise. Of the campaigners I know, one is a PHD student, two are lawyers, one is the CEO of a major charity and I myself have a degree. We've read the green papers or white papers or CSRs in detail and have an excellent grasp of what changes will mean. We're just not always sure you've done the same.

I'm sorry to shout the next bit but I'm running out of ways to make the next point in a way you might notice :


We hear very often that you listen to and consult with health and disability groups over your current proposals, but I can find little evidence of this.  These charities have written to you asking to meet, whilst other leading charities wrote to the Times  begging you to listen and engage. You've never contacted myself or other cyber-campaign groups like the Broken of Britain.

If you press ahead with changes to ESA and DLA as they stand, you will find a Poll Tax/Iraq sized albatross hanging around your necks. There are some very damaging proposals in both reforms and it is in no way dramatic to state that they will cause great hardship, poverty, distress and even death. Why not iron things out while it's still not too late? Why not change things in a way that will achieve your supposed objectives? This is an issue that gains enormous support and coverage online - my own blog has gone from nowhere to become the 23rd highest ranked political blog in the UK in just 4 months and it is only a matter of time before stories of destitution and suicide make this a national issue that won't go away.

Many campaigners can only conclude that the entire exercise is a cost cutting measure. Can you blame them when George Osborne announced how much he would save through these measures before a single reassessment had even taken place? The rhetoric used in this debate has often being accusatory and intimidating "Cheats mugging the country" "Skivers and Scroungers" This has often been fuelled by your own press releases and really needs to stop if we are ever to have a reasoned debate on the issue.

All I can do is ask, yet again, that you stop and listen. When something is truly unjust, those who fight it will win in the end. Surely it is better to do it together and with respect than through endless Daily Mail headlines and suffering?

**As ever, I need your help. Maria Miller's contact details are listed below. PLEASE take the time to
1) Share this letter online. Click on the Twitter or Facebook buttons on this site or link to other sites.
2) Use this letter as a template or send your own to the DWP address.
3) Phone or email
4) Blog yourself if you prefer.
5) Maria's constituency is Basingstoke - if you are a constituent, please consider making an appointment for her surgery - we need you most.

Appointments can be made by telephoning 020 7219 5749.

For all constituency correspondence contact Maria at;

        Westminster                                      Basingstoke            
        House of Commons                             The Mount
        London SW1A 0AA                             Bounty Road              

For all Ministerial correspondence contact Maria at:

        Department for Work and Pensions
        Caxton House
        Tothill Street
        London SW1H 9DA

Originally posted by Sue Marsh on Diary Of A Benefit Scrounger 


Project V - (In)Voluntary Work

2/14/2011 04:01:00 pm BenefitScroungingScum 13 Comments

On Valentine's day, traditionally, we hope for messages of love and support but this morning, like many other mornings, my inbox was filled with nothing but messages of despondency and despair.

Today I received a message from a 60 year old British lady who's worked hard all her life, paid her taxes and her national insurance, until 4 years ago, when she became disabled.

Despite being in receipt of Disability Living Allowance she has been deemed fit for work by the Work Capability Assessment and placed onto Job Seekers Allowance where, for the past four years, her local Job Centre staff have witnessed how hard she has fought to enter paid employment.

Now, she is being forced to work 37 and a half hours a week - 'voluntarily' - to receive her benefits. She tells me that she doesn't mind this, that in fact she's more than happy to contribute to society in return for her benefits, but that the work she's expected to do is heavy manual labour gardening alongside young offenders and substance misusers, work she is simply not capable of physically carrying out. If she doesn't comply with this work she'll lose her Job Seekers Allowance. If she does comply with this work, she risks further injury or even being deemed ineligible for her Disability Living Allowance because she's attempted to comply with rules for other benefits. Once this lady loses her Disability Living Allowance she will become homeless: the money is used to cover the shortfall in her rent in the private sector; she won't be entitled to Local Authority housing because she's older but not old enough; because she's childless and because there's simply a massive shortage of Local Authority housing, so she faces a stark choice: she either complies with work that she's physically incapable of doing or she risks losing her home. Once she loses her home, she's also likely to lose her eligibility for Disability Living Allowance because she'll have no address.

Once that happens, she'll no longer be able to pay for prescription charges for the medications which keep her alive, nor will she be able to keep her assistance dog, so she will be living on the streets without hearing, without assistance, without money and, quite understandably, she wishes to die instead of that.

All this talk of the 'Big Society' from David Cameron, himself the father and son of disabled men, is laudable but it's also being used as a cover for the wholesale massacre of the welfare contract that the British people have with their state. Are we really saying that when the measure of an enlightened society is how it treats its most vulnerable, in this case, sick and disabled people, that that is something, that in 2011, in Britain, we are not capable of doing? To paraphrase, or perhaps canibalise the words of a far more eloquent disabled persons than myself, "Do not go gently into that dark night. Rage! Rage against the dying of the light!"

Transcript kindly provided by OldManKelv Thank you!  

Update: 17/02/2011 The lady in question has been called to a meeting to discuss alternatives after much correspondance querying whether her disabilites and care needs had been taken into account when deciding upon this placement, which is fantastic news. However, what is less positive are the accounts of similar situations coming into many of TBofB team making it clear this is not an isolated incident. 


Resonance FM Radio Show Download

2/12/2011 08:59:00 am BenefitScroungingScum 2 Comments

The download for yesterday's discussion of the proposed DLA reforms on Resonance FM's Technical Difficulties radio show is now available here 


Resonance FM this afternoon..

2/11/2011 01:24:00 pm BenefitScroungingScum 1 Comments

I'll be talking about the proposed 'reforms' to DLA and general disability stuff on Resonance FM's Technical Difficulties at 3.30pm today. I'm a bit spoonless though so please forgive any inarticulate mumbling!


BBC Ouch Podcast

2/10/2011 05:27:00 pm BenefitScroungingScum 2 Comments

Featuring yours truly talking about The Broken of Britain and latest disability news is available to listen or download here


Publicly Private

2/09/2011 12:22:00 pm BenefitScroungingScum 8 Comments

Yesterday I went to see the gastro specialist at the local private hospital. Despite my discomfort at the blatant queue jumping I felt I had no real alternative as the NHS list meant waiting until June to see the same consultant, something the consultant looked depressed and resigned about when he was told. Realistically this is the only one of the gastro consultants at the local hospital with enough experience of complex cases to see me. Whilst I could put up with the stomach symptoms for a few more months, they and the lack of sleep are having a major impact on my overall condition. So, private appointment felt like the only choice, particularly to allow the kind of time needed to go into the complications EDS causes. 

The private hospital phoned in the morning to ask if they could bring the time of the appointment forward  by 20 minutes. The neighbour who was giving me a 'Big Society' lift managed to rearrange her work schedule and her daughter's college project plans so she could fit in with the last minute change the hospital asked for.  We arrived in plenty of time for the appointment but I wasn't seen until after the original appointment time, something which would be expected and understood in a busy NHS clinic where lots of doctors see multiple patients but less so in a private hospital with one consultant running a well spaced list.

Unfortunately the consultant had not received a referral letter from my GP although the practice had promised they would fax it last week. That always creates a difficult situation for a doctor, so wasn't the best start. I explained that I had Ehlers Danlos Syndrome, that I'd had these particular problems before and then we started to go through a routine set of questions about symptoms. I didn't realise until later that the first alarm bell for me was that the consultant didn't ask what type of EDS I have. A question which might seem unimportant but is vital to ensure the patient doesn't have the vascular type of EDS which typically proves fatal in middle age and carries with it far higher risks for any surgical procedure, however minor, than even the increased risks the other types of EDS produce.

The consultant ran through his checklist at a pace which would have alarmed me in an NHS clinic, but infuriated me in the private sector, the whole point of paying a consultation fee being to allow time to go into the much wider range of problems that having an underlying condition creates. There was no insight into the impact on my other symptoms or how I might be managing as a disabled person. No questions about whether I live alone or have support. All of which I have learnt to expect as standard lines of enquiry from NHS doctors.

The most common gastric problem in EDS patients is probably reduced motility due to stretchiness of the tissues. I currently have a grossly distended abdomen which is markedly worse when I'm standing up, in fact after a few moments upright breathing becomes noticeably more difficult. I've had this problem on many occasions in my life and it always fluctuates along with my overall tone. It's been a particular problem over the last year or so as I've had increased spinal instability in the thoracic region meaning my physio is having to manipulate not just my spine on a regular basis but also do lots of work on my diaphragm which bulges down and out as a result of the spinal instability.

Having raced through whether I had reflux, D and/or V, pain, constipation, etc, etc it was onto a quick physical examination with me lying on the examination couch and no comparison made with standing, something that's particularly important to look at as laxity is the primary cause of these problems and that alters depending on posture. I'd mentioned not eating gluten during the questions and that I get a strange, blistering rash on my feet when I do eat wheat or gluten. That was dismissed as dermatitis herpetiformis 'only' occurs on the legs. I have no medical training and am certainly not qualified to say what kind of rash I have, but this was another alarm bell for me. If there's one thing we EDS patients are reliably good at it's having bodies which do things that are far outside the 'only'. Hips or larynx's generally don't dislocate without severe, extreme trauma such as a blow or car crash, except in people with EDS who don't require any actual trauma to dislocate pretty much anything. A doctor unable to cope with the leap in thinking required to understand how a body does things that are supposedly impossible is not a good doctor for EDS patients even though they may be exceptionally skilled in their own particular field.

There was much mention of stress, depression, anxiety, upset and IBS and no mention of the things that are most likely at the route of the problem, laxity and motility. Well, no mention from him. He did know that people with EDS often have problems with the valve at the top of the stomach not closing properly though, but didn't seem to make the leap to the broader understanding that the laxity affects the entire gastric system not just isolated valves.

His initial opinion was that it could be gall bladder, inflammation, or IBS but that bloods, ultrasound and cameras up and down would be needed. All sensible investigations to make, but in an EDS patient who's as lax as I am reporting that this is a lifelong problem it's approaching the problem from the wrong angle. I gave the name of the specialist gastroenterology Professor at Barts who sees lots of EDS patients but that wasn't noted down. The consultant asked if I had a specialist for my EDS and I explained that Professor Bird had recently retired, and that I was now being seen by a local rheumatologist, but that he had only had the chance to meet me once. I thought it best to omit the local rheumy had looked like a rabbit in the headlights his 'oh crap I've never seen a patient like this' fear was so obvious.  The consultant insisted he'd be able to get everything he needs to know from my local rheumatologist which is again worrying as the local rheumatologist made it very clear that a patient with my severity of EDS is far outside his realm of experience.

And that leaves me with a problem. I actually have complete faith in my local rheumatologist; his lack of knowledge is not an issue as he's the type of doctor to enjoy learning and capable of rapidly thinking outside the box. This particular gastric consultant  is considered to be expert in his field. I have no reason to doubt that, he saved the life of a friend many years ago, and were I a 'normal' person I would have complete trust in this consultant. However, what I doubt is his understanding of the potential for an EDS body to behave in ways supposedly contrary to medical science and adapt rapidly and accordingly. In the past I've been on the receiving end of too much failed surgery compounded by too much surgical ego* which first blames previous doctors, then equipment, then the patient before labelling them as 'mad' whilst never considering the problem might be with the reasons or methods for performing the surgery and I'm not willing to ever be placed in that position again.

The biggest problem caused by going without a correct diagnosis and becoming a 'heartsink' patient is that it destroys the ability of the patient to trust their own instincts. Medical students are still taught that the patient will tell them the diagnosis if they ask the right questions and listen well, for good reason, the clues to what the cause of a problem is are almost always there in the patient's answers. We all know the difference between when we are really unwell and when it's just 'manflu' as it's something our bodies tell us, but years of being told there is nothing wrong regardless of what symptoms are reported undermines that natural instinct and creates a confusing situation where the patient doesn't trust what their body is telling them or what the doctor is saying so loses the ability to report the correct symptoms in an appropriate manner.This leads to a vicious circle where it becomes far more difficult for the doctor to sift through the reported symptoms to prioritise as the patient doesn't know what's normal or not and leads to much frustration and difficulty for both patient and doctor.

I've been diagnosed long enough now to start having the confidence to trust my own instincts again, and right now they are screaming at me that however excellent this particular consultant is, he is not the right kind of deductive thinker to treat someone who's body works contrary to the norms. I need to be treated by someone like Dr Freak Clinic who says he throws away all his taught medical knowledge and uses logic to work out how a body which is built differently to 'normal' might be going right or wrong.

Which basically means I'm fucked. Going privately again is out of the question, at least for now. I still had a little extra DLA money from the months I didn't have to pay gas bills and that will be used to pay for this consultation. If Professor Bird were still working within the NHS it would be relatively straightforward to get the local consultants to write or phone him for advice, but that is much more difficult now he has retired and not been replaced at Chapel Allerton. Fortunately a wise friend has suggested I could ask my GP to write to the expert Professor based at Bart's which is excellent advice as the local consultant is definitely not the type to accept a high level of expert knowledge from a patient but will hopefully be more open to that insight from a fellow professional.

*to be fair to the surgeon in question, he was the only doctor involved in my care to give me any kind of apology after I was diagnosed with EDS and would admit in private if not public that he let his ego get in the way of the patient's best interests. He has also drastically altered his surgical practices and particularly eligibility for surgery based on the mistakes made in my care and now does 95% less of that type of surgical treatment. A result which is far more important to me than any compensation payment could ever be.


Project V, Part II: Our Spoonie Lives

2/08/2011 10:31:00 am BenefitScroungingScum 0 Comments

The Broken of Britain Twibbon


At the heart of The Broken of Britain campaign is the commitment  to being a transparent non-partisan representative voice for disabled people in the face of welfare reform. Additionally, the ongoing negative coverage of the disabled as ‘scroungers’ in what seems to be a campaign against us has become the driving force fuelling many of our projects. Like many organisations in the Digital Age, we make ample use of social media as a campaigning tool. Because TBofB is an effort organised and run by disabled people in disparate locations around the UK, it can rightly be said that we are Digital Activists. The use of social media allows us make our voices heard and on a global scale – something that would have been far more difficult without the internet.
As with every other aspect of our lives, our attempts to raise awareness about issues important to our survival have to be markedly fluid because of our various health concerns. Indeed; whilst I would liked to have had all aspects of this particular project finalised a few says ago, my body had other ideas. It is this reality which is the basis for our #TalkingTuesday and #ThinkingThursday #TwitterStories campaigns, ongoing since November 2010.
Those fortunate enough to not have our issues or care for someone who does have no concept of what our lives are like as Spoonies. We have been letting the world know how our lives have changed by chronic illness through our own #disability, #mentalillness, #invisibleillness, or #Carers stories in a single 140-character tweet. This double-barrelled action has been our way to counter the stigma attached to disability and the outrageous presumption-filled hate that comes with it. The majority of tweets received thus far also made their way into our warmly received “One Month Before HeartacheBlogswarm last month.

Project V,  Part II: Our Spoonie Lives

The government are intensifying their efforts in this final week before the Valentine’s Day deadline to respond to the Consultation on the Reform of Disability Living Allowance. This coming Wednesday, 9th February, Minister for Disability Maria Miller is holding a live event via The Guardian where she will answer pre-submitted questions from the public. That same morning, Secretary of State for Work & Pensions Iain Duncan Smith will be attending the next Universal Credit Hearing. No doubt we can also expect even more of the usual from the tabloid media and blogs.
Last week we launched Project V where we asked you to send a Valentine’s message to your MP. Today marks the launch of the second phase of the project: the aim is to expand the existing TBofB Twitter Stories Campaign, allowing our stories to be shared quickly and easily. This is especially helpful for those of us with debilitating conditions that impair their ability to concentrate on standard long-form blog posts.

This is how it works:

  1. We are asking for your 1-Tweet Twitter Stories. You must adhere to the 140-character Twitter limit.
    Tweet @BrokenOfBritain
  2. Tweets must be relevant to Disability, Mental illness, Invisible Illness or Carers.
  3. One Tweet per person please, to start: if you have already participated in #TalkingTuesday and/or #ThinkingThursday, then your existing tweet already posted to our Facebook Page, will be used.
  4. The Twitter hashtags to use are: #ProjV and #TBofB
  5. We have a TBofB Twitter Stories Blog where all tweets will be posted
  6. Tweets will be accepted every day from now until 11pm, 13th February.
  7. On Valentine’s Day – the only tweets from @BrokenOfBritain will be the 1-Tweet Twitter Stories.
  8. I am also donating the feed of my personal account, @IconicImagery, to this project. We are also asking for Supporters to donate their Twitter feed for Valentine’s Day and only tweet these stories.

Whilst it comes as no surprise that forests, libraries and even fish have garnered significant support;  it is nonetheless hugely disappointing that DLA and related issues don’t have the same consideration by the public at large.   In the words of the late, great Benjamin Franklin, “justice will not be served until those who are unaffected are as outraged as those who are”.  Please take part in this latest TBofB initiative and let’s see if we can change that by getting #ProjV trending on Twitter.

Lisa J. Ellwood
Disability & Mental Health Activist
The Broken of Britain


The Prime Minister's Instructions "You Have To Make The Fight"

2/04/2011 10:47:00 am BenefitScroungingScum 19 Comments

Prime Minister David Cameron claims parents of 6 year old Dylan Scothern have to 'make the fight' to have his speech therapy reinstated. Dylan’s speech therapy was originally removed because he was ‘too old’
This order comes right from the top. All of us facing cuts to care services, DLA, ILF, ESA and a myriad of other benefits, supports and services for disabled people now have instructions directly from the prime minister as to how to respond.

Speaking during wednesday’s PMQ’s the Prime Minister said: "You have to make the fight" as a flippant response to the MP of the family of a Nottinghamshire boy with autism who faces his speech therapy being withdrawn.

The prime minister continued: "I know as a parent how incredibly tough it is sometimes to get what your family needs." This from a man whose inherited wealth means that he has never had to fight the fights of ordinary people in his life - he could simply ‘show them the money’ and enable himself and his family to get what they needed. 

But perhaps the PM is right. The Broken of Britain is concerned about the cuts faced by disabled people. David Cameron himself is urging us to "make the fight". So remember, you heard it here, direct from the top. The Prime Minister has issued his instructions to us all. 

Let's fight then, and win.

By Kaliya Franklin and Rhydian Fon James 


Announcing Project V - Tell Them How You Feel

2/03/2011 08:10:00 am BenefitScroungingScum 3 Comments

The consultation on Disability Living Allowance reform closes in just over a week, on Valentine's Day, and The Broken of Britain intends to keep up the pressure right to the very end. We're asking you to send your MP a Valentine card to remind them just how much you love them... or, alternatively, to remind them to oppose changes that will cause hardship for disabled people.

Along with the card, send the letter attached to this link. All you need to do on the letter is insert your MP's name, and your own name and address. You could either buy a cheap card and post it off to your MP, or you can print a free card. We want you to send your MP this card in time for the 14th of February and we suggest the following text:

Don't Break The Hearts Of Disabled People

The 14th of February is the closing date for the Public Consultation on the reform of Disability Living Allowance. The consultation is flawed, and biased towards an outcome that will cause hardship for disabled people in Britain. Please register your concern by signing EDM 1332 on the DLA Consultation.

This action is all about grabbing the attention of politicians and is, admittedly, a bit cheesy. But, assuming that you are not lactose intolerant, cheese can be useful!


Window Licking

2/02/2011 11:57:00 am BenefitScroungingScum 2 Comments

 An insight into madness from my favourite mentalist

Once upon a time I was mad. This was mostly an excellent time for me because I got to do anything I pleased. I smoked where I wanted and any nurses that complained would discover that I, Skip of the Lick am a fucking good shot with a fire hose. Water and laughter would then commence, accompanied by screams and more chuckling.

I would chat with Mental Health workers about the insanity dancing unhindered through the corridors of my mind and they would get cross with me. I would then talk about things with them using my sock puppet King Norbort. Our chats went like this.

Mental Health Worker - Skip you're unwell
Skip - I'm fucking mad actually, would you like to see my paper clip time machine
Mental Health Worker - No Skip, you're ill  not mad
Skip - Woof woof, my bed can reach warp factor 8

Today Nick Clegg has decided it's time to end the 'Stigma' surrounding Mental Health and the mad people who have none of it. This makes me smile, because Nick is a tit who wouldn't know mad if it drew a stick man on his pants and swallowed his wife's lip gloss because it looked like it would taste nice (it doesn't - I know this)

I'm still mad, I have a piece of paper that says so (it also acts as a free bus pass - when I show the driver it they stop demanding I pay any fare and they leave me alone) I'm not hung up about what people think of me (except my stick men, I get upset when they take the piss. Then I rub them out - ha! I win)

There will always be a stigma surrounding people who bark at the moon and wear hats made of tin foil (I prefer cling film, it looks more urban) So Nick is a bit mad if he thinks he can change things. Which is sort of ironic and makes me smile. Trying to change this stigma would be like trying to put spaghetti up a cats arse - painful, pointless and fucking insane. So wobble off Nick you skip licking throbber...


Gizza Job. Go On, Gizza

2/01/2011 12:17:00 pm BenefitScroungingScum 18 Comments

Although I've been writing about daily life with a disability for well over three years now the subject has never had such widespread public attention*, so egged on by my fellow benefit scrounging diarist I'm bringing you the reality behind the smiles. 

My standard answer to 'how are you?' tends to be either 'fine' or 'I'm good thanks, how are you?' because really, what else can I possibly say? 

I'm fine today, good, even great maybe. That's what Roland said last night when he came to take me out for dinner. At 530pm. He drove me to the pub we were eating in and after forcing me to stay in the car while he came around to help me out he patiently helped me get to the accessible entrance as I insisted on trying it out. Roland knows to be firm about insisting I stay put as he's witnessed way too many in and out of car dislocations, but seems to find the head smashing into the car roof part most distressing. It was all great, accessible, despite being up a significant slope, ready with it's doorbell to alert the staff someone needed to get in. Except the doorbell didn't work and Roland had to carry me up the steep steps himself. It's a good job I don't weigh too much or care about the 'indignity' as my friends often have to carry me to get me into places. We'll gloss over how my ribcage buckled as Roland picked me up, and how painful the pressure of increasingly collapsing ribs is, the potential damage that does to internal organs, or the dislocations during dinner that are so frequent I usually don't even mention them. We had a nice dinner while Roland chatted about how fantastic it is that I'm well enough to go out for tea and marvelled over the fact that I ate most of my meal, something that just hasn't been an option for most of the previous 12+ months as I've spent them decorating anywhere I've been with vomit. I was home by 7pm, too tired to even continue a conversation, but still somehow finding the energy to involuntarily scream when my whole shoulder girdle decided to dislocate.

So yeay me, I'm great! So great it's nearly midday and I haven't been able to find the energy or co-ordination to get washed or dressed. So great that once again I was awake at 5am, writhing in pain from the gastritis type symptoms which have been waking me up between 3 and 6am every day since sometime in October last year, which despite the most powerful medications my GP can prescribe hasn't gone away. It's got better though, I've not vomited all over my flat for at least a few weeks. Unfortunately I can't say the same for the other end of things, which don't seem to have received the same message to stop. God, pooing one's pants is undignified. I hope the NHS cuts haven't kicked in as yet now I'm waiting for a referral to a named gastro specialist. It has to be named rather than a general referral because if I end up in a clinic with a new consultant or registrar with no experience of hugely complex medical and surgical patients then they tend to panic and order all sorts of unneccessary  and expensive tests or investigations because they just don't know where to start. Of course naming a doctor doesn't guarantee they'll know anything about EDS or be able to cope with such a severely affected patient, so my GP and I just had to pick the specialist most used to complex cases and hope he doesn't go wibble when confronted by me.

Ehlers Danlos Syndrome is hugely affected by the rise and falls in hormones during a woman's menstrual cycle so today really is one of the month's few good days for me. Whilst I'm wriggling and fidgeting constantly to put my slippy joints back into contact with each other I expect less major dislocations. On an amazingly good day I can count major dislocations in the 10's whereas on a bad day I can count 10's of dislocations in a matter of minutes. On a good day I don't have to worry so much about choking on food, drinks or my own saliva. 

I like good days. Even if I'm still in my pj's at lunchtime. I can concentrate, mostly. On bad days I can't think or see straight and stumble in a confused state through the long hours of overwhelming pain. On good days I can read a book, write blogs, make films or speak on the radio. On bad days I don't have even enough concentration to watch a film or TV programme I've not seen before. When I was at work my boss thought I was having seizures as on bad days I did the weirdest things, especially with filing. Eventually she found a system where she could guess at some of the creative ways my morphine addled brain might have come up with to file documents but plenty were lost for good. That was before work declared me a health and safety risk for my inability to stop dislocating during working hours. I can sort of see their point...

Mmm, morphine. After spending the best part of a year withdrawing from prescribed oxycodone I've developed a healthy fear of controlled drugs. Actually that's not true. The drugs are awesome. Withdrawing however is most definitely not so awesome. Fortunately oramorph tastes like utter crap so doesn't encourage one to take it when it's needed. It also spaces me out so much I can't really function so I hate taking it in the daytime. Cannabis is far more effective and safe a painkiller but tends to get a different reaction in public than a bottle of prescribed morphine does. 

I just dislocated my elbow and shoulder reaching for a cup of tea and have stopped to reduce the finger dislocations caused by typing this post. 

So that's me. I'm fine. Great even**. Once I'm moved over to ESA I'm almost certain to end up in the fit for some work category. I'd like that. So long as I can find work I can do in my pyjama's from home whilst puking, pooping, dislocating, falling, ingesting morphine and all manner of other prescribed (or not) drugs. 

Gizza job then. Go on, gizza.

*being ignored by the majority of the mainstream media is widespread attention when it comes to disability issues!
** Whilst writing this post the dislocations I can actually remember resetting (as opposed to doing so without consciously registering it) are at least 2 shoulders, elbow, multiple fingers, both wrists, spine, ankles and I'll do my knees and hips when I manage to get up from where I'm sitting on a dislocation reducing beanbag.