Politics, Policy and Persecution - The People's Review of the WCA - Further Evidence

12/09/2013 09:56:00 am BenefitScroungingScum 1 Comments

It is clear that the Work Capability Assessment (WCA) has been a source of great misery and distress to many sick and disabled people, but there has never been an entirely satisfactory explanation for why this is happening. The finger of blame has been pointed at the outsourcing contractor Atos Healthcare, the influence of the insurance industry on the development of the test, the frontline assessors, the claimants - if you can think of it, at some point someone's blamed it.

Whilst the existence of targets are vehemently denied by politician's, civil servants, the DWP and Atos, the misuse of statistical norms as outlined in my latest report 'Investigating the real reason for the misery of fit for work assessments', published by the Centre for Welfare Reform, means there is a de facto target system in place which limits the overall proportion of successful claims.

Statistical norms are somewhat dry and dull, especially to someone like me who runs out of numbers when they run out of fingers and toes, but I have spent the best part of the last three years obsessed by this misuse of norms, researching and investigating how such a system could operate and why it would be denied by politicians of all parties.

Over that time period I have asked everyone I've met about norms - politicians, private sector employess, Atos assessors, GP's, everyone. I'd ask people I bumped into in corridors at conferences, I'd randomly phone up people I thought might hold other pieces of the puzzle and ask them to talk to me. The more I asked and the more I understood, it became clear that those denying the existence of targets often didn't understand what norms were, didn't know they existed or just didn't understand. There was one consistency though - everytime I explained how I thought the norms were being abused to cap the overall number of claims - the colour would drain from the face of the listener, they'd become very quiet, and some would mumble things like 'oh shit'. Once explained, it was obvious to them how statistical norms were being abused to drive the overall proportion of successful claims.

On paper, this seems quite a simple process, with only one consistent figure involved in the process throughout it's five years - Lord Freud. So determined was he to remove two thirds of incapacity benefit claimants, Lord Freud only needed three weeks to write his report recommending just that. In that time the government has changed, all three political parties have had a taste of power, and the misery caused by the WCA has continued. But only Lord Freud has remained consistent - civil servants have changed, staff at Atos have changed, yet Freud continues, so determined to push through his scheme, and complete the transfer of the human beings he refers to as 'stock', that he even changed political party.

The misuse of statistical norms is dry, technical stuff. It's vital to understand because it acts as the driver of the whole system, the cause of all that human pain and misery. Today, a new report is released by an anonymous author, too sick and too scared of the consequences to be identified. Despite all that, this author has also dedicated years to understanding the misery of the WCA - for them the focus was on the human stories of suffering.

The People's Review of the WCA - Further Evidence gives the people who have suffered as a result of Freud's scheme to cap the overall number of claims the opportunity to speak in their own voices of the damage such a blunt system has done to them and their families.

There are many people I need to thank for their assistance whilst I was researching 'norms', and many of those people cannot be named due to the vulnerable position they put themselves into by whistleblowing. So, this is a mass thank you - to everyone who had to endure my 'norms' related questioning and also to the anonymous author of The People's Review who has been determined to give the voiceless a voice.

The evidence is clear - 'norms' are misused to drive the system to the desired result, ie limiting the overall number of claims. The impact is also clear, the media regularly feature accounts of terrible WCA decisions, and politicians scrabble to justify the worst cases as 'mistakes'.

And there is the true horror of the WCA - none of this was a mistake. All the pain, fear and stress experienced by people like Karen Sherlock, and the many, many examples in The People's Review are written off by polticians as 'mistakes'. But this is no mistake, the contractual terms for the operation of the WCA are clear - all solutions MUST be based around an imposed 'norm' for the Support Group of just 11%, rejecting claims for Employment and Support Allowance was exactly what Freud intended to happen.

All that pain, all that fear, all that waste - not mistakes at all, but the exact result desired by Freud and achieved by the artificial imposition of 'norms'.


Leaked Evidence Shows DWP Set Quotas For 'Fit For Work' Assessments

12/03/2013 02:59:00 pm BenefitScroungingScum 7 Comments

Why are so many sick and disabled people being failed by the Work Capability Assessment and who is to blame?

1. The contract between DWP and Atos Healthcare specifies all costs and solutions MUST be based around an artificially imposed ‘statistical norm’ for the Support Group of 11% (which has since been allowed to rise slightly). This ‘gears’ the whole WCA system to deliver that ‘desired result’.
2. The manner in which the audit system is used within Atos Healthcare, including whistle-blower evidence of ‘punitive auditing’, means there is insufficient latitude for assessors to freely use their professional judgement about an individual’s true fitness for work.

The Work Capability Assessment (WCA), used to determine eligibility for Employment and Support Allowance (ESA), which replaces Incapacity Benefit, has been dogged with problems since its inception. Department for Work and Pensions (DWP) ministers and Atos have always denied the existence of ‘targets’ for the WCA. Now, for the first time, evidence is presented that the WCA operates to a norm-referenced system. This is a de facto target system, since when ‘statistical norms’ are applied to a process such as the WCA they deliver the same outcome as targets. As Lord Boswell predicted in 2007, this use of statistical norms means "the test will, in effect, be geared to deliver that [desired] result”. Being able to consistently deny the existence of any targets has been crucial both for the Labour government who introduced the WCA, and the Conservative/Liberal Democrat Coalition government who have continued with its use despite evidence of significant faults in the process.

The media regularly feature stories of people even the Daily Mail would consider deserving of ESA who have been refused the benefit – people with sickness or disabilities as diverse as Huntington’s Disease, uncontrolled epilepsy, kidney failure or brittle bone disease - but until now there has been no completely satisfactory explanation for this misery and hardship.

Ministers, MPs, the DWP and campaigners point the finger at Atos, the company contracted to carry out these tests on behalf of the DWP. The DWP say Atos are at fault and that they will improve the system by breaking their monopoly and allowing other companies to bid for the contract.  Labour have also announced that they will “sack Atos”. DWP ministers blame the civil servants and the civil servants seethe. It is a classic case of political, “it wasn’t me Miss, it was them”.

To explain what all this really means education analogies are helpful. Exams can be either ‘norm-referenced’, ‘criterion-referenced’ or a mix of both. A criterion-referenced exam system means students receive an objective grade based on their performance against a pre-defined marking scheme. A norm-referenced exam system sets ‘quotas’ which limit the overall proportion of students able to achieve each grade.

Originally ‘A’ levels were simply pass or fail, but in 1963 guidance was issued which limited the overall proportion of students allowed to receive each grade. This was a norm-referenced system which ensured that only a small proportion of students could achieve ‘A’ grades. This was widely perceived as unfair to students and during the 1980’s ‘A’ level marking systems were changed to remove quotas.

The audit system as controlled by the DWP can be seen as a teacher, and Atos the poorly performing pupil. The teacher punishes the pupil, focusing on reprimanding him when he smudges his ink (deviates from the ‘norms’ imposed in the contract) whilst ignoring the content of his answers or his behaviour. The teacher blames the pupil for not learning and the pupil blames the teacher for everything. Before anyone should feel too sorry for the pupil, it’s important to note, this pupil is more Harry Flashman than Harry Potter; the real victims are those affected by their combined bad behaviour.

The test for the old Incapacity Benefit - the Personal Capability Assessment - was a criterion-based system. People were awarded points based upon how they scored against certain criteria – for example, those who could walk less than 50 metres were awarded more points than those who could walk less than 200 metres. If the person scored the number of points, across all the criteria, necessary for benefit receipt, they would be entitled to the benefit.

However, the WCA is a norm-referenced system. People must both score the number of points required for benefit receipt and fall within the proportion of people the norms system will allow to receive the benefit. In practice this means there is a finite number of claimants the assessment system will allow to be awarded the benefit, regardless of the number of people who objectively meet the criteria for benefit eligibility.

New evidence gleaned from the original contract between Atos and DWP, testimony from Atos employees and Freedom of Information requests, clearly indicates that the outcomes for individual sick and disabled ESA claimants are not driven solely by the severity of their condition or the nature of their disability. On the contrary, as Lord Boswell warned in 2007, the imposition of statistical norms onto the WCA gears the outcome of the whole system to achieve the desired result: in effect a cap on the overall number of people the system will permit to be granted eligibility for ESA.

Evidence shows that Atos uses a ‘management information tool’,  based on the ‘statistical norms’, to ‘manage’  the behaviour of individual assessors. Although officially the audit of assessments is not supposed to be punitive, it’s clear from whistle-blowers that in many regions there are negative consequences for assessors if they do not restrict the number of points they award to claimants to comply with the norms. This makes it difficult, for example, for them to award a high point score to every claimant who, in their clinical judgement, has a serious condition affecting their ability to work.
There is therefore a serious risk that the overall outcome for the claimant  – whether they are placed in the Support Group and given unconditional support because they are unable to work, placed in the Work Related Activity Group on the basis that they are likely to be able to return to work in the future, or denied ESA altogether and expected to actively seek employment – may be driven as much by the severity of other claimants’ conditions as their own, particularly those claimants assessed on the same day by the same assessor!

So is removing Atos actually a solution to the problems with the WCA? The answer is no. As long as the WCA remains a norm-referenced system of assessment, removing Atos is the political equivalent of fiddling while Rome burns.

It is clear, and in the light of this evidence totally unsurprising, that this iniquitous system is causing immense distress, hardship and increased ill-health for the very people who most need support, whilst at the same time costing the taxpayer many millions of pounds in unnecessary assessments and appeals.

This evidence and analysis must be understood by politicians of all parties, since only a cross party solution can fix this cruel, wasteful, immoral system and prevent more unnecessary suffering. If sick and disabled people are to receive the support they need - and which a civilised, compassionate Western society is expected to provide - this new report, published by The Centre for Welfare Reform, "Investigating the real reason for the misery of 'fit for work' assessments", is essential reading for both Parliamentarians and the public alike.


Meeting Michael

11/08/2013 10:09:00 am BenefitScroungingScum 0 Comments

We sat facing each other, loosely holding hands, cocooned by the strange aucoustics in the room. The buzz of noise wrapped around us, creating the kind of privacy those who lived their lives in full view of the Dilke's* were used to grabbing wherever they could. We sheltered what we said from those further away, words difficult to hear, harder still to speak, with meaning so very clear.

The postcard written from the heart upon arrival told just the basics of decades of pain;

"They locked me away. There was no-one to tell. They tied us to beds. I fought and fought. 4 people went to prison. Now I have a job, I'm an advocate and I'm happy" 

But in our bubble we talked more. I listened to a story told many times before. I witnessed the strength gained each time as the words let out the pain trapped inside.

"They marched us in lines. Naked. Not just boys. Grown men too. Completely naked. All together"

Tears rolled down all our cheeks as we huddled together.

"Every day you got raped. There was no-one to tell. They didn't care. They raped you too so you couldn't tell."

We held a hand of his each, two of us, women with different disabilities, too young to have lived through the terror of institutions. Filled with awe by his strength, this intelligent, articulate man who had fought and fought. For himself but for us too. To ensure our futures would not be destroyed by the pains of his past.

Thank you Michael. We will never forget you or the battles you fought.

* Dilke is a derogatory word for those who staffed institutions used in the novel Skallagrigg  


Conference Diary - Conservative Conference Day 3 #cpc13

10/07/2013 09:12:00 am BenefitScroungingScum 1 Comments

Tuesday morning dawned bright, early and with the traditional spoonie greeting of being run over by a bus in the night. The desire to flee home to a comfy memory foam bed and not have to sit on a scooter dislocating all day seemed overwhelming. As did the need to know who my 10am meeting was, as foolishy I forgot to write down anything but the time.

Despite phoning a taxi 3 times it did not arrive. Finally manage to flag down taxi in 'oh god I'm late for the meeting' panic. Taxi driver helps load scooter and off we go. Taxi driver gets stopped by the police.

Finally arrive late at conference to see huge mass of protesters and queue to get through security. Whimper pathetically about having to scoot through such a crowd at waist height. Decide only way to ask nice policemen to help. Fortunately nice policemen decide to escort me through security while I whimpered some more about the crowd. G4S appeared slightly non plussed by my appearing with a police escort who politely requested they look after me but me & the pink pliers made it through intact. Just.

The best random conference meetings always happen by chatting to random smokers. Had a good chat with nice chap from the big Christian media company in the UK. Compared notes - neither of us could remember the bit in the bible where Jesus urged blaming the poor for everything. Nice Christian smoking man went off looking very troubled.

More smoking with lovely lady who turned out to be Jake Berry MP's assistant. Lovely lady sorted us a quick chat with Jake about disability stuff and housing. Had a moan about the shortfall between Local Housing Allowance and actual rent. Concerned MP said 'but you should be getting a DHP, they're for people like you'. Pointed out applying for DHP's utterly degrading and short term. No answer to that beyond 'oh dear'.

Met very jolly posh Tory, just out of schoolboy who explained to us his role was to be able to talk to 'normal' people. What a poppet. Still being drunk at 11am probs a good start with the 'normals' but more likely to find those on a bus than inside secure zone. He'll probly be PM in 20 years.

Went back to try and find Conservative Disability Group man. Jacket in evidence, no sign of man but nice Conservative Friends of Sri Lanka man came over to chat. Went back to see Conservative Friends of Azherbijan. Got invited to very posh, very past bedtime party. They remembered me from last year so filled a bag with goodies for BendyNiece.

Got invited to unlisted fringe - George Osborne in conversation with Gary Gibbons. Quite interesting really and fortunately my jaw was glued together with the sweets the Wheelchair Evacuator people gave me so I couldn't make inappropriate comments. Fringe ended, scrum of people headed to try and meet the Chancellor. Took the 'sod it, they can only say no' option that has served all campaigners so well and headed into scrum. On scooter. At crotch height. Ick.

After being pushed in front of by another queuer I was rather surprised when the Chancellor looked over and made eye contact with me saying 'I've seen you, stay there, don't move I'll come over to you'. How can a man who's mother worked for amnesty and who can spot a distressed disabled behind a scrum of overexcited Tories not see what his government are doing to said disableds? These are the toughest moments at conference - how can these people who are so polite, so helpful and so friendly to our faces not understand what we're saying to them?

Chancellor George Osborne stands and talks to Kaliya Franklin sitting on her scooter

So, we shook hands and I asked if he could spare me some time to discuss welfare, disability and employment. The Chancellor said he would make time to meet and discuss it properly, so having had lots of photos taken his SpAd and I exchanged details and off we both went.

After that the plan was to go to head back to the JRF tent for a rest and then go to more fringes. The plan worked as far as the JRF tent and a lie down with a blankie. After about 10 minutes I realised if I didn't leave NOW I was going to throw up all over the JRF tent...which seemed no way to repay their hospitality.

Scooting and dizziness don't mix. Nice policemen will approach you to see if you're drunk. Slurred speech doesn't help this impression. Tears ensued. Finally managed to find a cab and get back to the hotel to become horizontal.

I wonder if I'll get that meeting the Chancellor promised...


Conference Diary - Conservative Conference Day 2 #cpc13

10/04/2013 12:06:00 pm BenefitScroungingScum 0 Comments

Beth and Kali get made up ready for a day lobbying 

Did I mention the tired? Goodness the tired! After a late night and serious lack of sleep we plastered on the slap ready to face the fray.

Arrived at conference and went through security. Lovely G4S security guard approached looking a tad nervous and said "Would you like to tell us why you've got a pair of pliers in your bag?" Apparently "because they're pink of course" is not an acceptable answer. I'd also advise not pointing out that due to epic crip issues you're unlikely to even be able to use said pliers but could do an awful lot of damage with the scooter. It makes even the friendliest of security guards a tad twitchy. Fortunately had the sense not to laugh and say "but you didn't find them yesterday, did you, eh, eh". Got through security still in possession of pliers offering biscuits as bribes.

Usual conference type chaos. Make a plan. Throw away plan when other things happen instead. Was supposed to debate workfare proposals with Christian Guy from Centre for Social Justice live on Sky News. Got briefed by lovely JRF people. Debate got cancelled. Cross journalist arranged a quick soundbitey thing. Apologies to anyone who saw it - I'd already had morphine!

Met a lovely delegate @meliden - we realised 5 minutes into the conversation that we'd been twitter pals for ages. Had some really good chats about disabled people, fluctuating conditions and employment.

Went to Eurocopter stall and had our photos taken on their funky green screen. May have been so overexcited about the green screen and green cape that I scooted off clutching said photo with no idea you were supposed to pay for photos. Oops. Fortunately nice Eurocopter lobbyist told me they'd never seen anyone so excited over a green cape and were glad to give me the photo for free. Phew.

Found Conservative Disability Group stand. Went back and back to CDG stand. No-one there except the 'make disability bearable' bears. In the spirit of 'free our people' we freed the bear and brought him home.

'Make disability bearable' bear working hard on his new life as an oramorph addicted scrounger
 Talked to lots of backbench Conservative MP's about disability, welfare and employment. Met lovely young chap from Conservative Future who wanted to support what we were saying on disability. Really supportive conversations with Eleanor Laing MP, Charlotte Leslie MP and Richard Graham MP and lots of delegates.

Discovered the 'wheelchair evacuator' guys. Incredible invention to be able to quickly attach the handles to any manual wheelchair and safely evacuate in an emergency. Especially clever as it keeps the attendant's back straight and is very affordable (£300-400) It is a wee bit bumpy, especially when the triathlete pushing you decides to run full pelt down the steps but it was good to know it doubles as an accessible roller coaster! Given the choice between bumping and burning I'm all about the bumping!

Nearly got thrown out by security guard when Wheelchair evacuator man ran full pelt through the main conference hall lobby and several Tories had to jump out of the way. Beautiful moment

Managed to leave conference with enough spoons intact not to vomit but not enough to make it to dinner. Fortunately the amazing @fibro_girl and her lovely PA Trish were there and could bring some food back to the room. We spoonies got our jammies on and laughed/bemoaned our inability to attend the really posh party we'd been invited to on the grounds that 9pm was way too far past bedtime. 


Conference Diary - Conservative Conference Day 1 #cpc13

10/04/2013 10:46:00 am BenefitScroungingScum 0 Comments

Despite military level planning on time to arrive, time to eat, time to nap it all went a bit wrong once we got to Manchester. Diversions, directions & protestors everywhere. Multiple sets of directions from traffic police later Lovely PA and I realised there was no way to drive to the hotel. Decided only answer was pile me in a taxi and get to hotel that way. Taxi driver's grasp of the English language was better than my grasp of Arabic...but frankly probably a close call. Still despite all that he got me where I needed to be and was kind and helpful. 

Got more stressful when arrived in hotel to be put on the 12th floor, furthest from lift, no idea where the stairs were or if the hotel even had an evacuation plan. If they did they weren't communicating that to their guests. Became slightly hysterical. Hotel moved me to 6th floor. Neither room accessible. Still no evac plan. Hotel staff really puzzled by my distress as after all "the accessible room is available for you tomorrow night"

Became completely hysterical & fled to rescue by lovely Beth Gerg to share her room in accessible Travelodge. Yeay Travelodge. Boo stupid posh inaccessible, 'burn to death PTSD' hotel. 

Disability and Employment fringe went well, very good attendance, quite a few delegates there along with the usual charity representatives. Brilliantly chaired by Isabel Hardman from the Spectator and Telegraph and the panel was Jaspal Dhani, Stef Benstead, Esther McVey, Ralph and myself.

Slight disagreement with minister over 10 points PIP issue. No-one in room any the wiser after endless 'but is that what you intended or not', 'well is it a typo then?' discussion.

Cripcarded Anne widdicome on way out of the fringe. I feel confident sharing with you that she is not a scrounger fan. She did agree to put in a good word for disableds though.

Finally got to restaurant at nearly 10pm. Fled restaurant as food arrived coinciding with onset of sweating/shaking. Its generally best to avoid embarrassing puke in public moment. So, a typically uneventful conference day 1 then. Can't wait for Osborne's 'stand up to the weak' speech tomorrow...


When drinking wine at sunset in a 'no alcohol zone' its important to remember...Wear pyjamas for that true 'Little Britain' effect...

9/02/2013 10:44:00 am BenefitScroungingScum 3 Comments

Photo shows BendyGirl sat in an attendant wheelchair holding a glass of wine with a pink, purple and blue sunset in the background

Photo shows BendyGirl sat in a wheelchair holding a glass of wine, dressed in pyjamas


Pour me something stronger #wca

8/19/2013 08:36:00 pm BenefitScroungingScum 6 Comments

The beauty of tonight's sky is such a sharp contrast to the sadness in my soul. How did we get here? When did it happen that the Britain we thought we knew slipped away, subtly shaded by something darker, more sinister and so frighteningly real?

Tonight I made a promise, a promise I was so saddened but not at all shocked to hear asked, a promise I hope very much never to have to keep, but a promise all the same. I had to promise that if anything should happen to one of the most courageous survivors any of us can imagine that I would make sure everyone knew who is responsible.

But, most of us? We already know, and even those who don't are beginning to shuffle with disquiet. We look away, those of us safe enough, secure enough to have enough. We look away so as not to have to face the fear that we are all innately vulnerable and that a need for social security does not make us lesser, or other, but fundamentally human. '

And whilst we all look away, I broke my heart listening to another seriously ill person being broken in the name of welfare reform. And I made the only promise I could - that if it ever comes to it I will make sure everyone knows who's responsible,


Rosemary's Baby? Inside The Ethics Committee, Radio 4 8/8/2013 9am #eds

8/07/2013 10:58:00 am BenefitScroungingScum 5 Comments

Last month I went to London to record 'Inside The Ethics Committee' for Radio 4, hosted by Joan Bakewell. It was as ever a vomit themed and fascinating experience - I'm told 'Can I have a vomit bowl just in case please' is one of the more unusual studio requests!

As I've already been asked, I'd like to clarify - I'm not the case study Rosemary and I'm not pregnant! However, Rosemary and I are almost the same age and we both have EDS - this meant I felt a huge sense of responsibility to Rosemary when we were making the programme - I didn't necessarily think the decisions Rosemary was making were always the decisions I would make for myself but I did feel it was vital to defend her right to make those decisions for herself, whatever they might be.

The subject of assisted conception, parenting and disability is obviously complex and sensitive, but I hadn't expected this to be the most challenging media recording I'd ever done...which is entirely my own fault for not thinking things through before I say yes to them! I am glad I said yes without thinking though as it was also one of the most constructive and interesting discussions I've ever participated in - having an all female panel and host definitely helped that. There was simply no-one looking for any kind of conflict but to explore with each other the different issues and potential consequences.

It was also fascinating to consider Rosemary's case from within a social model perspective - I talked to lots of disabled people to get their perspectives before hand, but after much deliberation and many lengthy conversations we all agreed that it simply wasn't possible to fully apply the social model (the theory that disability is caused by an inaccessible world rather than an inherent medical model impairment) to Rosemary's situation because she has some life threatening medical issues that simply won't work within a social model framework.The social model applied in some places very effectively and up to a certain point which always ended in 'but there are no barriers we can remove to ensure her participation without actually killing her' and frankly most of us were unsure that was a terribly social model solution to the situation..

As so many people use this blog as a place to find information about Ehlers Danlos Syndrome I think its really important to point out that for most women with EDS pregnancy does not present the same level of risk as it does to Rosemary due to her iatrogenic* complications.There is lots of helpful information about HMS or EDS and pregnancy on the Hypermobility Syndromes Association website.

I'm really looking forward to hearing the finished debate - that's totally different from participating in it! I hope the intricacies we all considered come across and demonstrate just what a difficult job ethics committees in these situations do...and makes the various ethics committees realise that if they are assessing ethics related to disability in relation to clinical decisions that they should never do so without including disabled people as part of that ethical panel.

When listening please bear in mind that Rosemary is a real person, the discussion is about her real experiences and challenges and please be mindful in any comments that Rosemary herself may read what you are saying. 

Inside The Ethics Committee airs Thursday 8th August on BBC Radio 4 at 9am. It'll be repeated and available afterwards on iplayer - I'm not sure how long the transcript versions take but all the older episodes have transcripts available so they will appear. For those outside the UK who wish to listen it might be worth contacting Radio 4 to ask if they have any plans to put the series onto the World Service.

*Interestingly iatrogenic is not a Radio 4 approved word - too difficult. Though to be fair that could well be BBC code for 'you can't pronounce it love so don't say it eh'!


2 wheelie women, 1 wheelie space #nogobritain

7/17/2013 10:30:00 am BenefitScroungingScum 8 Comments

It used to be so easy writing a blog about living with disability - people do funny or silly stuff, write it up, other people read it and laugh or gasp at said silly stuff, job done. I was always careful, just in case someone recognised themselves in the pieces I wrote, and when I lost my anonymity I removed lots of old posts as it wasn't fair to have written about people who had no right of reply. So that's why, since the blog-worthy incident on Saturday I've been wondering how I can write it up honestly when some of that honesty is about people who may read this having behaved badly? It seems the only way is to be considerate but speak the truth.

It all went really smoothly initially - I know the Lime Street assistance staff and they know me, ensuring I'm on the train with no problems - just like any other journey to London. I'd booked my tickets early, reserved the wheelchair space and the seat opposite so I can transfer out of my uncomfortable scooter. I'd even, unusually for Virgin Journey Care received an email confirming that I'd booked that particular wheelchair space and seat. So, when a lady of about my age arrived on the train just moments before departure it was obvious something had gone wrong.

And it had, we'd both booked the same seats. Instead of informing the lady that the seats were already booked when she rang journey care someone simply left my reservation on the wheelchair space and added her PA's to the additional seats. That meant I was booked in, the PA's (her husband and an employed PA) were booked in but the lady using the powerchair was not.

The whole carriage was busy and two women using mobility equipment plus one set of rather pissed off carers meant we were attracting alot of attention. It was immediately obvious that the other lady had to have the wheelchair space - she was a powerchair user who couldn't transfer into another seat whereas I can. It was also obvious that if we didn't figure out a solution quickly between us all that the train would need to leave and we'd be put off the train. The train staff did their best to sort it out, as did I and the other wheelie using lady but the attitude of the people with her, whilst totally understandable was unacceptable and left me feeling really vulnerable and threatened. Had GG who usually puts me on the train been there, there would have been a full on fist fight given the attitude of the other carer's - neither GG nor the other lady's husband were the type of men to back down and neither of us would have managed to control protection fuelled testosterone fury. So, intimidating and upsetting though it was to be on my own, it was probably better that way.

The most infuriating part of the whole situation was that the other lady and I had immediately started to work out between us how we could share the available space - she had to have the wheelie space, there was no question, but fortunately as we were both very petite we could just about manage to re-arrange so that she had room to turn round, and we could squeeze in my scooter so that people could pass. The only reason we were able to do this was because it was a weekend and there were no catering trollies needing to get through - people could pass but on a weekday one of us would have been put off the train.

However, the lady's companions were having none of this 'we'll share' plan which the other lady seemed as ok with as I was. The people in the seats immediately behind offered to move, but the PA's were still cross and wanted to insist I was in their seats and had to move. The other lady had already seen the confirmation email I showed her and knew it was a genuine mistake but the other's acted like I was just one of those people who sit in a wheelchair space and refuse to move.

Things culminated when the PA said to me "I'm not being funny, but you can walk a bit and xxxx can't walk at all, so you have to move" Having exchanged horrified glances with the other wheelchair user I managed to calmly but firmly reply that I was on my own with no support and couldn't move further from the toilet, whilst they were two people to support the other wheelchair user and that it was not a competition as to who was more disabled, but that there was no reason the two of us couldn't share the wheelchair table and the PA's sit immediately behind us. I'd checked with the other lady that she did not have to have her PA's immediately next to her and she was quite happy to share the table with me with her PA's immediately behind me in her line of sight.

The train moved off and that settled things - she got the space, we got my scooter moved and for the rest of the journey she and I had a really nice chat while her companions continued to glower. It was stressful, upsetting and degrading for us both, but additionally for me, enormously intimidating. I understand the attitude of her companions, I've seen a similar attitude occasionally amongst some of my friends when access has failed and the general public are being deliberately unhelpful, but this was slightly different - I was a disabled woman on my own and of all people I sort of expect other disabled people and their staff to understand. The other disabled lady and I understood each other perfectly, but for some reason her companions thought it was acceptable to be aggressive and intimidating not just to a woman alone, but another disabled person.

Given the potential for the other people involved to read this blog post I can't take the easy route, call them wankers and be dismissive of their viewpoints. So, instead I'll just say to all PA's, carer's, family or friends of disabled people - please bear in mind the affect of your actions on other disabled people, not just the one you are with. We all understand the frustration, we all live with it, so that means that of all people we should treat each other with that compassion and understanding, not go off like a bottle of pop at the first hint of a problem!


Inside The Ethics Committee - August 8th, 9am #eds

7/16/2013 10:23:00 am BenefitScroungingScum 0 Comments

A couple of weeks ago I went to London to record 'Inside The Ethics Committee' for BBC Radio 4. The panel discussion was all about the ethical dilemmas in an anonymised but real life case of a lady called Rosemary who has Ehlers Danlos Syndrome and wants a baby.

It was a fascinating and challenging experience which hopefully will come across in the 45 minute discussion hosted by Joan Bakewell.

Inside The Ethics Committee airs on the 8th of August at 9am and will be available after that on iplayer here


"Don't throw tea at me!" A Very Bendy Job Interview

6/27/2013 12:02:00 pm BenefitScroungingScum 5 Comments

Yesterday I had my first, formal job interview in more than a decade. It went well...I think, although my criteria for 'well' may not be quite those of the typical job seeker. For me, well, meant that I did not throw up in front of or on any of the interview panel. This is a good thing as apparently vomit can be a tad offputting in an employee.

We got off to a good start with the water, offered to me in those light weight, disposable plastic cups which are definitely designed to do nothing except fly independely across a room, showering their contents as they go. I'm not sure 'do you mind if I stick to using my plastic bottle' is a standard interview question, but it really should be. 

I also did not fall over, well, not completely fall over anyway - judging by the haste with the chair of the interview panel displayed in attempting to reach me before I tried to get out of my seat, falls risk was paramount in their minds.

When the noise of dislocating joints was too loud to ignore I tried to hide my grimace of pain with a smile. That kind of got us all through the first dislocation which was only a finger when the panel all twitched and asked if I would perhaps like a rest. We soldiered on and clearly dislocation training worked as when I managed to pop back both shoulders, elbows and multiple ribs stretching with the impressive staccato sound effect of multiple gun fire only the panel twitched. I was cool, calm, laid back and professional throughout. Honest. Hopefully the recording did not pick up my muttered cursing at the pain or the nauseated expression of the panel members.

Being aware that body language is an important part of any interview strategy I tried really, really hard to have some that wasn't rude. Sensibly I wore a dress long enough to avoid potential panel pant flashing incidents.That worked quite well. For keeping my pants hidden. Less well on the not flashing my bra at the panel when it turned out the only way I could get up from the chair was to lie my entire upper body on the table and lever myself up. Fortunately one panel member was busy sprinting across the room to assist me and the others politely averted their eyes from my bra. I felt reassured that at least I had on a bra, and that it was both pretty and clean. I'm sure they'll give me the job on that basis alone - 'can manage to find and wear clean underwear' is definitely a formal requirement in most jobs.

The 'managing to remain upright in a seat' part of the interview was a challenge too far for me and I appreciated the panel's polite response to my constant wiggling, popping and occasional slumping onto the table for a rest mid sentence.

The interview ended on a wonderful question 'Did Kanga tell you about that?' to which the only obvious answer is 'Kanga facilitated communication'. Sadly I was too distracted by intense pain to manage something quite so coherent but I was very glad to see the panel respected Winnie The Pooh as much as I do.

Weirdly, despite all that I enjoyed the experience. I know, I know, it really is time to address getting out more often to do things classed as 'fun', job interviews not being top of most right minded people's idea of a good time. I think the panel enjoyed it too as one member generously offered to let me throw water over her anytime, but specified no hot tea. Perhaps they've been reading my blog?

Since being returned home I have done nothing but sleep, take oramorph, sleep, take more oramorph and whine pathetically about how bad I feel. When I was leaving the interview it did occur to me that potentially this opiate/sleep/pain cycle might impair my performance in any job and that perhaps even Atos had a point finding me unfit to work. Frankly that thought was obviously running through the mind's of the panel too so we did have a little chat about the feasability of the job for someone in my position. They were very encouraging about time to rest and recover though so that was kind. They also had a better mastery of body language than me too as they clearly projected 'I think you should probably be in bed love' without any need for a Babel fish translator.


BBC Breakfast June 10th #PIP National Roll Out

6/20/2013 01:08:00 pm BenefitScroungingScum 2 Comments


Kanga and coke - 100 Voices 2013

6/16/2013 08:36:00 am BenefitScroungingScum 3 Comments

Yesterday was the third annual 100 Voices conference held by Brandon Trust.100 Voices has grown impressively since it started, yesterday was more like 200 voices and the venue felt a bit crowded.

Having covered both employment and transport at past events, this year the subject chosen through the area forums was personal safety ie hate crime. It was great to see so many different organisations attending to give presentations or supply information - the MP Charlotte Leslie came along for the morning and gave a speech, there were police community support officers with safety devices to give away and beautiful bulging biceps (I'm not certain the biceps were a requirement but I feel they should become so every year) a police inspector who spoke, the lord mayor of bristol and many more. This year Billy who has moderate learning disabilities compered the whole event and did an amazing job - watching him tease the police inspector about all the senior officers he claimed to know was hilarious as the inspector clearly thought Billy was a senior staff member who was astonishingly well connected!

The standard of presentations is very high, each user forum group puts on their own show - this year we saw a reconstruction of the kind of daily harassment people with learning disabilities experience on public transport and a brilliant performance of 'our house' by madness which the team had rewritten to explain their lives. Just fantastic!

Of all the events I get asked to speak at 100 Voices is the most difficult to prepare for and the most rewarding. Usually I try to do something positive and upbeat, but that was a tough task covering hate and mate crime. In the end I decided to talk about friendship, what it means and how we can tell when someone isn't really a friend but trying to take advantage. I used some quotes from Winnie the Pooh and we went through some example scenarios of friends and people taking advantage.

You can always tell when a speech has hit home by the people who come to tell you their experiences afterwards and yesterday I was overwhelmed. There were hugs and kisses to express shared emotion and one lady who has come to speak to me every year but then been too shy to say a word dragged me off to see her Kanga bear and told me all about how it makes her feel safe and how much she loves Winnie the Pooh. It was just so fantastic to see someone who in previous years couldn't really manage a word effusive and excited to explain things to me. I'd talked a lot in the speech about how people can sometimes tell disabled people we have to pay for them if we want to go and do something and there was a lot of feedback on that issue, some of it very worrying. But right at the end of the day when I was leaving two of the guys came over with a drink they'd bought for me - it took a while as they both had challenges with verbal communication but by using mime and the odd word they explained they had bought me a drink to say thank you to me. I've been bought many a posh drink, especially in my younger, wilder days but this slightly flat cola was without doubt the best drink anyone has ever bought me.


Labour Announce Independent Task Force - Takes Aim At Disability Poverty (Press Release)

6/10/2013 09:57:00 am BenefitScroungingScum 4 Comments

Labour takes aim at disability poverty
Labour today launched a new taskforce led by Sir Bert Massie, to look at ways to break the link between disability and poverty.
Launched as Disability Living Allowance is abolished nationally, the taskforce will review ways of helping disabled people meet the extra costs that disability imposes and recommend changes to the social security system to maximise disabled peoples’ control over their own lives. The taskforce will focus on better use of existing resources.
The launch of the taskforce follows Ed Miliband’s speech on modernising social security in which he said a Labour government will reform the government’s failing programmes to help support more disabled people into work.
Recent figures revealed disabled people are twice as likely to live in low income households than non disabled people - yet the government's 'strivers tax' will push 50,000 more disabled people into poverty while the DWP's Work Programme is failing to get 98.7 per cent of disabled people into jobs.
The taskforce will be headed by Sir Bert Massie CBE. Sir Bert is disabled and was previously the CEO of The Royal Association for Disability and Rehabilitation (now Disability Rights UK) and Chairman of the Disability Rights Commission.  He is currently a Governor of Motability and of Liverpool John Moores University.

Anne McGuire said:
“The government’s so called welfare revolution isn’t helping disabled people, it’s pushing them into poverty. I am delighted that Bert Massie has agreed to chair the taskforce. The members of the group bring a wealth of experience, either as disabled people or those who have worked with disabled people. I am sure they will throw down some interesting challenges to us as we seek to improve the lives of disabled people.” 

Sir Bert Massie said:
“Even in an age of limited resources there are more humane and better ways of supporting disabled people than this government’s unprecedented assault which has left millions of disabled people facing greater poverty. I welcome the determination of the Labour Party to seek ways of enabling disabled citizens to play a full role in society and to provide the support to bring this about. The report of the taskforce will suggest ways forward.”

Notes to editors
1) Other members of the taskforce are:
 Dr Roger Berry - is a former Member of Parliament and is heavily involved in disability issues. Prior to becoming a Parliamentarian he taught economics at Bristol University.
Agnes Fletcher - advises organisations on equality law, policy and practice. She was a Director at the Disability Rights Commission for five years, has provided consultancy to the Equality and Human Rights Commission and other public bodies and has worked as an advisor to government. She is a disabled person.
Neil Crowther – is an independent expert specialising in human rights, equalities and disability rights.  He was previously Director of Human Rights at the Equality and Human Rights Commission. Before joining the EHRC he was Head of Policy at the Disability Rights Commission.
Kaliya Frankin – is a disability activist with a deep interest in social security issues.  Disabled herself, she campaigned against changes to disability benefits introduced by the coalition government.
 Ian Greaves – is the principle author of the highly respected Disability Rights Handbook.
2) Ed Miliband announced this week that the Labour will reform tests for disability benefits so that they aren’t just about the benefits people get but about supporting people to work.
Labour introduced tests for ESA because those that can work should do so. We support tests for DLA & PIP to ensure the benefit goes to those that need it.
But the test needs to improve. When 42 per cent of people are winning their appeals, the Government are clearly not getting it right.
But we want to go further and deliver real savings by supporting disabled people into work and raising the employment rate for disabled people in the UK. We would do that by making the tests as much about what work people could do and the support that would be needed to make that happen, as they are about whether or not someone gets a given benefit.
3) On Monday 10 June new claims for Personal Independence Payment will start in all parts of Great Britain. There will be no new claims to DLA for people aged 16 to 64.



Mountains for Mia - can you help Mia communicate?

5/24/2013 12:40:00 pm BenefitScroungingScum 0 Comments

Mia Austin is a young woman from the Wirral. In 2009 when she was just 21 and working as a travel agent Mia suffered an enormous stroke and developed locked in syndrome. This means that although Mia can see, hear and understand everything going on around her she cannot move or communicate without moving her eyes. Local people have fundraised for Mia so she can live at home with her family and she has some computer equipment which allows her to write poetry. Mia has just written a booklet 'hot potato' telling the story of her life

Like any young person Mia can be frustrated by technology that isn't fast enough, but unlike most Mia's computer is literally her lifeline to the outside world. Mia needs a new computer and a specialist physiotherapy machine so she can continue having proper rehabilitation at home. These two pieces of equipment cost £23000 and £7000 respectively.

Mia's website, Mountains for Mia has more information & details of how to donate http://mountainsformia.co.uk/index.html


The Right To Live And The Right To Die - #BADD2013

5/01/2013 12:16:00 am BenefitScroungingScum 6 Comments

There are two bills scheduled for debate in the House of Lords in the near future, at first glance they may seem completely unrelated, but in fact are inextricably interlinked - social care and assisted dying. The vast majority of rules and regulations which govern the lives of disabled people are legislated for by those without disabilities, although there are a handful of disabled Peers or MP's, these two bills are no exception from that dissonance between those who make rules and those who have to live by those rules. 

Social care is currently in a precarious state - a system that was already stretched to breaking point prior to the change in government is fracturing at the seams from the cumulative impact of austerity and ignorance. When social care is mentioned in the media the primary focus is always on the care (or lack of)  provided to older people, but working age disabled people make up a third of the total recipients. Of these working age disabled people, those with the most severe disabilities who were previously able to access the ILF to match the funding provided by their local authority, will all be funded fully from their local authority, who of course will not be provided with a commensurate increase in funding from central government, but will have to attempt to accomodate this extra cost burden from within existing adult social care budgets, which are being reduced by an average of 28% by 2015.

Accessing social care as a working age disabled person is far from easy - it involves a lengthy, complex process of assessments, tick boxes and in most local authorities a pretence of choice. In reality what that tends to mean is that the disabled person only has choice and control over their life if their choices match those their social services department deem acceptable. This means that even before the full impact of budget reductions to Local Authorities, the closure of the ILF and other welfare cuts impacting on individuals and communities the vast majority of adult social services departments are breaking under the strain. Once past 2015, factoring in the full impact both of budget restrictions and the potential loss of income to Social Service's departments currently paid by charges from the care recipients DLA award as disabled people move through the new PIP assessment, which the government predict will be available to 600, 000 fewer disabled adults, the situation will become catastrophic.

So, what does all this have to do with assisted dying? Its simple - quality of life. We can all empathise on a very human level with people like Tony Nicklinson. Tony felt his life as a quadriplegic was intolerable and before he died of natural causes, he campaigned for the right to die on his own terms. For me, there is a particular, personal concern about assisted dying and high level spinal cord injury - the instability in my neck means that such an injury is more likely for me than the average population. This means I have considered how I would personally feel in such a situation. The only honest thing I can say with certainty is that I do not know how I would feel about facing the future with such a significant disability, and that I hope, but can't be sure I would eventually adjust to the situation and find a new, different quality of life. But I don't know that - it could be that like Tony I would find the situation unbearable and be desparate but unable to end my own life. 

Despite that, I still firmly believe that legalising assisted dying in the current socio-political climate is dangerous and should be prevented. The 'social model' is a theoretical model created by disabled people to demonstrate that it is actually an inaccessible society which causes disability, not the primary, medical model based idea that impairment is caused by failings on the part of the individual, ie disease or disability. The social model does not seek to cure, but to explain that with the removal of barriers to access, participation in society increases consequentially. Although the social model can be controversial amongst disabled people, applying its inherent principles to policy making is one way of making them as accessible to as many people as possible. Improved physical access doesn't just benefit disabled people, but if done properly, everyone - older people and parents with young children.

It can be argued that assisted dying sits firmly within social model territory - if a disabled person requires access to live independently then the assistance to end their life is as much a right as the assistance to live their lives. But therein is the inherent problem with both social care and assisted dying - there is currently no easily enforceable, statutory right to the care, equipment and financial assistance disabled people need to live a truly independent life. Within a rights based framework the right to die would fit alongside the right to live - after all being born and dying are the most natural part of any human life and with the correct assistance disabled people can be enabled to make that choice for themselves just as they can be enabled to parent, shop, swim or work.

This brings us back to issues surrounding quality of life - with the correct support to live an independent, self determined life disabled people can make their own value judgement on their quality of life. However, with many disabled people no longer qualifying for welfare benefits or social care that quality of life is impaired by not having the right to the support needed to live independently. It can be argued, successfully I suspect, that without that right being present there is an element of duress in every situation that might lead to assisted dying. As Lord Scarman described so well in relation to economic choices within contract law;

"The classic case of duress is, however, not the lack of will to submit but the victim's intentional submission arising from the realisation that there is no other practical choice open to him"

This element of choice is critical, especially within the framework of austerity. Consider what makes most people feel their lives are worth living - being a member of a family, having friends, being able to work, to socialise, to have hobbies or interests. Whatever those individual choices are they are too an extent universal - the security of those factors is what makes most of us happy. Lord Scarman is talking about contractual decisions, but it applies perfectly to assisted dying because what that is really about for most people is practical choice. 

The government have made certain practical choices to deal with austerity - they have chosen to place the burden of cuts on the most vulnerable. This in turn affects the ability of individuals to exert practical choice and control over their own lives. Without sufficient support to access society, to participate in everyday activities quality of life is severely reduced. If the practical choice is available and enforceable to have the support to access all those essential areas of life, then the nature of that individual value judgement on their quality of life changes. Without that practical choice there is an inherent element of duress in every decision about living, let alone dying. Within the legal framework surrounding economic or contractual decisions, the contract is considered to be void if there is an element of duress, it does not take an enormous leap to understand how that element of duress present in decisions about assisted dying should equally mean the decision is considered void and therefore should remain illegal. 

The fear of becoming disabled is widespread in society, disabled people are used to hearing people tell us that 'they would die' if they couldn't 'walk, run, swim, work' etc. The reasons for this are complex, partly based upon fear of the unknown and the prejudicial attitudes to disabled people inherent in society. Its also understandable, less than 10% of disabled people are born with their impairment, the vast majority will become disabled in adult life, whether via accident or more commonly illness. Becoming disabled is distressing and challenging, but the vast majority of people go through the stages of grief and eventually learn to be happy with a very different life than they may have expected. Different can often mean more rewarding. 

That understandable fear means that most people do not realise that living as a disabled person can be a happier, fuller life than it was before disability. It means that people see death as a better option, not knowing that disability is just one of the many experiences life throws at people, and that it is how we as individuals are able to deal with those experiences which most influences that qualify of life. 

Today is the eighth annual Blogging Against Disablism Day (#BADD) hosted by the fantastic Diary of A Goldfish. It will be my seventh #BADD and I've watched with interest and sadness how the focus of many of the blogs written for the day have moved away from independent living to the impacts of austerity. Cuts to welfare impact human beings, particularly so upon disabled people. Quite literally, when the government cut, we bleed. The consequence of increased poverty and exclusion from the world is one issue, but when put alongside the increased focus on working it is quite another. What this means in practical terms is that it was quite bad enough for disabled people when all we had to deal with was exclusion - it is frustrating to be unable to access the world because you are excluded by that world, but a terrifying Orwellian nightmare to be excluded, blamed for that exclusion and expected to participate more fully. 

So, until such time as all disabled people have a legally enforceable right to independent living I will, albeit reluctantly, remain opposed to and campaign against assisted dying. I will put my time and effort into something which would benefit all our lives, where the right to assistance to die is built into that framework of the right to live, where if assisted death is an individual's choice it can be made freely and without duress.


The Right Result #esa

4/27/2013 02:37:00 pm BenefitScroungingScum 11 Comments

My form had to be returned by April 8th so I was quite surprised to get a phone call from the DWP so quickly - a nice lady rang yesterday morning. The nice DWP lady seemed a bit peturbed by my voice loss* and kept asking if I was well enough to speak to her as she could call back. Having not heard why she was phoning at that point there was no way I was letting her go without telling me what the call was about, I'd have been hysterical all weekend.

So, through croaks, coughs and splutters the nice lady read out her script and told me that I'd been found to have such significant disability that I've been placed in the support group, to be reviewed in April 2016. I asked her a few questions, but had to wait for the right part in the script she was reading - apparently they aren't allowed to deviate from that even when asked a question. Mostly it was ok, but there were disturbing implications in the script - I'd been found too sick/disabled to be expected to participate in any work related activity, but I could always 'volunteer' at the Jobcentre if I want. Which is slightly odd because volunteer and jobcentre aren't exactly words I'd naturally associate with each other...it took me a while to work out it did not mean that the jobcentre would support me with actual volunteering work, but that I could volunteer to erm, I'm not sure actually...be sanctioned on a work programme?

Once the relief settles down a bit I'll go through the inevitable psychological consequences of being deemed so disabled that even in the current climate the DWP don't feel the need to harrass me, but that isn't a new feeling, its always associated with successful benefit claims in relation to sickness or disability. It's strange - however frightened and anxious people are about claiming, however relieved they are by being granted eligibility to a particular benefit, afterwards there's always a strange readjustment process to a sickness or disability you've long adjusted to coping with as best you can.

But, I'm one of the lucky ones. I have a clear diagnosis of a genetic disorder to explain my symptoms. I have a supportive GP who was happy to supply the relevant medical evidence, I'm educated and I understand how to fill out a form, I have people in my life who I can ask for help and support through the process. Like I say, that makes me one of the lucky ones. Going through the ESA process is not like that for most people. And even as one of the lucky ones I've experienced so much stress from the process that its had a significant impact on my general health, which will take me time to recover from. If I knew I had to do all this again next year I would be in utter despair, but having three years gives me a level of security about my future and the freedom to continue either volunteering or hoping that eventually there might be a realistic way for people too sick/disabled to work consistently, even on a part time from home basis to use their skills to earn some money but not lose eligibility to the support we need. Once upon a time some of us hoped this would be the big change with Universal Credit, but the application of politics and ignorance to a once good idea has ensured that won't be possible.

I haven't had any contact with Atos at any point, so I can't really comment on their part of the process, other than having been told my application was assessed by them via 'scrutiny' which means that a decision can be made based on the form and submitted medical evidence without seeing the claimant face to face. Communications by phone from DWP have happened when they should do, including reminder phone call. Actually both ladies were lovely which helped, but in all the years I've had to speak to DWP staff as a claimant its the one's who aren't which stand out as the exceptions. Most have been kind and helpful. The new focus on jobcentres and work from DWP staff as part of their standard script is deeply unhelpful though and comes across as intimidatory even when the caller is pleasant.

Written communications however were a different matter. I had the latest version of the form to fill in and it was awful, worse than previous versions. There are tickbox questions which I couldn't work out what the answer was meant to be because the question was so poorly worded. There is no option on the mobility tick box to answer 'less than 50 meters'. As I'm an awkward type I wrote on the actual form that none applied, but only after a great deal of distress. Lots of people tick the 50m box because its the shortest distance but then of course it indicates you can walk 50m. This box comes up in discussions with claimants over and over again.

I can't stress enough how bad the tickbox questions are. With the boxes you can write in what you need to write, they are too small but most people know to use extra paper and attach it. But the tickboxes take more time and cause more distress than the free text answers.

I learnt that going through the process feels like Russian Roulette. I knew with utter certainty that my form had been filled out correctly, that I had hit various descriptors at various points and that the letter from my GP contained the exact information required to make a decision. Despite all that it felt entirely down to chance - would the Decision Maker understand the condition, would the Atos HCP have enough time to scrutinise the file, would it go direct to a face to face WCA because it was too complicated to make the decision. And of course that builds on the enormous stress and fear about the consequences of going to a WCA and how that might impact on the rest of my life, ability to remain in my own home due to impact on benefits by being found fit for work or placed in the work related activity group.

The biggest relief for me is getting a review date in 2016. I now have some security because I've got three years. The constant stress for people repeatedly being given awards of 12 months or less is breaking many people. Asking around other claimants many people haven't been told how long their award lasts so are living with the constant stress and anxiety every time the postman comes. Knowing is better than not knowing, even if its not exactly what you hoped you would find out, and ensuring that everyone is clearly given the date when they can be expected to be re-assessed is such a simple task for the DWP, but would make such a different to sick and disabled people.

*yes, again. I blame the mini weapons of biological warfare also known as nephew and niece!