Demonising the Disabled

Demonising the Disabled

Ron Liddle from The Sun wrote a column condemning the ‘fake disabled’. He says, “My New Year’s resolution for 2012 was to become disabled. Nothing too serious, maybe just a bit of a bad back or one of those newly invented illnesses which make you a bit peaky for decades – fibromyalgia, or M.E.”

Peaky? This describes people that often become totally bed-bound, are in crippling pain, too exhausted to lift your head off the pillow or have to use a wheelchair. ME regularly kills people after ravaging their immune system, although the press keeps quiet on that. People don’t speak of the young people having to live in their beds due to the pain Fibromyalgia causes.

Another charming person, this time James Delingpole from The Telegraph, writes in support of Ron, claiming that there are eleven million people now saying they are disabled, and this it what’s crippled the economy. Eleven million disabled people there may be, but only 2.6 million claim Employment and Support allowance, the ‘not able to work’ benefit. The other 8.4 million actually work. Crazy, I know! (No reflection on those that can’t work meant, just that there is an assumption that disabled people don’t partake in employment.) It may be many people now fit the definition of disabled, which is ‘A physical or mental impairment which has a substantial and long-term adverse effect on a person’s ability to carry out day-to-day activities’ but the vast majority of disabled people try their best to work.

Another couple of points on these multitudes of disabled people crippling the economy is that Employment and Support Allowance is around £97 a week, and if your partner earns over £5343 a year you get nothing. The governments own figures put the fraud rate for ESA at 0.3%. The fraud rate for Pension Credit is 2.3%, but nobody seems to mention that. They are also bringing in a change that people can only claim contributory rate ESA for a one year.  After that year they’re means tested, with a limit of £6000 in savings.

There is another disability related benefit – Disability Living Allowance, that is frequently used to support working. The extra costs of being disabled is significant. Equipment costs a fortune, needing transport on every journey soon adds up, treatment that enables you to work is often not covered on the NHS, heating for those with joint issues, extra cleaning costs, heat pads and so on. So this benefit is often used to pay for all those bits and pieces, or actually extremely important functions that allow people to work, and as a result pay taxes.

This is having a real impact on people’s lives. The suicide rate is constantly increasing and if the changes to DLA go ahead – where one suggested option is to remove the mobility allowance from wheelchair users with the idea a wheelchair makes someone independent, this suicide rate is going to vastly increase – no doubt about it. That ‘free car’ often complained about is something where you can cash in part of your allowance  in return for a leased car.  This allows people to have low-cost adaptations and transportation that meets their needs. The adaptations I needed came to a few thousand pounds, and really the adaptations didn’t amount to that much.

DLA is incredibly hard to get. The stress and torment people have to go through to get it is indescribable. People with terminal illnesses get turned down. This is why the fraud rate is so low. Yes, of course people will always slip through the cracks – it’s easy to lie about something that isn’t personal to you, and even suck doctors in with it.  And these are the other that papers scream about, this 0.5% that makes the news daily – Scroungers!  Work shy!  Liars!  They don’t point out the 99.5% that are genuine.

I’ve just spent three weeks with many chronically ill people, most with multiple painful illnesses, and the vast majority of them worked full time, way past what they should have done. Many volunteered on top of that work, others were carers for other people. Hardly any of them were on the benefits they should have been and were struggling financially. Many had been awarded DLA at a very low rate, when they should have been entitled to a much higher rate, but were too frightened to fight as they will frequently turn around the remove the whole award.

The demonisation of disabled people, fed directly to the media by the government in order to make these changes, needs to stop. Hate crime against disabled people is up by 75%. Seventy five goddamn percent! Probably because every time someone opens a newspaper they find a story they’ve been fed about that tiny 0.5% of people incorrectly claiming Disability Living Allowance, or a story about people claiming they have a “fake” condition like Fibromyalgia to get the so-called free car handed to them.

Credit to bsr dk

Credit to bsr dk

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And the results are in…

And the results are in…

Finally after years of stress, struggling and tears I’ve been awarded Disability Living Allowance.  Both Care and Mobility, at Higher Rate Indefinitely.

They sent the confirmation six working days after I saw the doctor – which isn’t long at all, although it felt like an eternity.

I can’t explain what a difference it will make.  I now become entitled to Working Tax Credit, free prescriptions and dental care (because of the WTC), can get a motability car or free car tax.  Overnight my income more than doubled, as I was living off 16 hours a week at minimum wage.

I will be able to afford to pay for the treatment I need, and help pay for a cleaner to help mum out as she has to look after the whole house and care for me.  And I can put towards to rent to get us a bungalow – something we have been struggling with the council for years with.  A bungalow would allow me to be able to access my own room, access the toilet and have parking outside the house – rather than down the street.

So to those out there still battling the system – please don’t give up.  It took me three claims, two tribunals and two medicals – but I got there in the end.

I do kind of want to send my award to the head of the second tribunal who said I was contriving my conditions/help I need, and to the first GP who did my medical who said there was nothing wrong with me with a note to them attached  – you can imagine what that would say, but a hint is that it’s two words long.

I now have a pile of consultant’s reports telling them they were totally wrong, and an indefinite award in response.

Credit to Steffen Zelzer at http://www.flickr.com/photos/67721855@N06/

Credit to Steffen Zelzer at http://www.flickr.com/photos/67721855@N06/

It’s a fantastic feeling.

DLA Saga Continues

DLA Saga Continues

On Tuesday the DLA doctor turned up at my doorstep – despite the medical being cancelled.

Yesterday the lady from ATOS phoned to give me a new date for the medical at the centre.  So they are continuing to go through with the medical despite the fact my claim has yet to be looked at.  Interesting tactics.

In other news, I’ve been signed off work for a month.  Hopefully it will help, as I’m just so exhausted at the moment.

Credit to Kurhan

Credit to Kurhan

New Claim Update

New Claim Update

Today was the seven year anniversary of my Nanna’s death, and as a family we go somewhere she liked to visit.  We were supposed to be going to Felixstowe today, but sadly the weather was so bad we ended up having lunch then heading to a shop in Hadleigh.

In the meantime, the lady helping me with my third DLA claim spent the day on the phone battling on my behalf.  She first spoke to the Medical Centre reception and asked whether they were wheelchair accessible, and they said they were, and they couldn’t understand why Atos had told me I couldn’t have my medical assessment there on Health and Safety grounds.

She also contacted the disability help line (not sure if this is the right name?) who were shocked at what was happening.  They phoned Atos on my behalf and asked why an earth I was being told I had to have a medical, and why was I being sent for a medical when they hadn’t read my claim form yet – as all the specialists letters in there give them in the information they need.  (I’m not exaggerating, they were brilliant, in-depth letters that should get me DLA based on those alone.)  The lady at Atos denied saying this until she finally looked up my file and apparently went quiet – so what she saw on the screen, I don’t know.

Atos

Atos (Photo credit: Wikipedia)

Atos said they would write to me with a new date of the medical, but the lady helping me is very hopeful that they may actually look at my claim form first.  This would mean the world to me, as I’m not sure I can face the stress of a medical at the moment, and the subsequent lies and the way they twist my words into something I never, ever said.

Thank god for this assistance.  She really is doing her best to fight for me, and I don’t know what I would do without her.   I’m perfectly able to fight for other people, but as soon as it comes to me I just become an emotional wreck – and you can’t when dealing with the Department of Work and Pensions or Atos!  So I just can’t thank her enough.

Applying for Disability Living Allowance – part 2

Applying for Disability Living Allowance – part 2

I detailed my first experience claiming Disability Allowance in a previous post.  The second occasion was a year or so later, now with higher care needs, and needing to use a wheelchair and walking stick.  This time I received a response saying I needed a medical within a couple of days of sending off the forms – before they could have even read them.  I was told a doctor would come to my house.

The doctor seemed fine at first.  He asked about my daily life, and what was wrong with me.  I had made notes beforehand so I remembered to cover as much as possible.  However, he made it pretty obvious he didn’t believe in my condition without actually saying so directly, and snapped at me numerous times when I forgot what I was saying (part of my condition.)  His ‘examination’ was dubious.   It was literally the following: listening to my chest, poking me twice in the spine, and asking me to walk two steps with my walking stick.

I received a letter saying I’d been turned down not long after.  I appealed and the process meant they first reconsidered it automatically.  I immediately requested the doctor’s report before they reconsidered so I could see what evidence they were basing their decision on, which I felt was fair enough.   I was told this process usually took some time, and I’d have enough time to respond to the report and submit new evidence in addition.  Instead I was shocked to get a letter shortly afterwards saying they’d turned me down at the reconsideration stage without me seeing the evidence or having a chance to respond.

It wasn’t until shortly before the tribunal I received a copy of his report, and was horrified.  He’d watched every little thing, and instead of asking why I did something, he put it in the report and twisted it.  For example I at one point for a minute or so I sat cross-legged because I’m hypermobile, and sitting straight on hurts my legs.  I regularly change position to stretch out my back, and legs.  He instead wrote that I sat in the ‘lotus position’ throughout with no problems.

One symptom of my condition causes extreme sensitivity, sometimes to sensations that shouldn’t be painful.  This is called Allodynia when a normally innocuous stimulation causes pain.  I particularly struggle with clothing, and so most of the time I wear loose fitting clothing.  On the day on the medical I was wearing a baggy top, and loose pyjama bottoms.  They were coloured, as PJs often are.  I wasn’t making a fashion statement, but everything else was too painful.  I had detailed the struggles I have had in relation to mental health and living in pain to him.   However on the page he should have detailed all this on, he instead simply wrote that I wore ‘bright coloured clothes’ so couldn’t be depressed.

He also wrote that I had nothing wrong with me.  I could walk fine with no problem and could walk 600 metres.  I had no joint problems and no care needs.  He wrote my memory was fine, and failed to mention the notes in front of me I was using to jog my memory.  I couldn’t believe it.

Again, it went to tribunal and a lady from Welfare Rights at the Council said she would represent me which was a great relief as I’d found the previous tribunal awful and very stressful, which made my condition worse alone.  But she informed me she was going into hospital and wouldn’t be able to attend with me during July.  I phoned them up straight away and informed them of this.  I was told it was fine, they’d made a note on the system  and I wouldn’t be given a date during that month.

Surprise, surprise I then got a letter with my tribunal date set for July!  I phoned them up again thinking they’d say no problem, and send me another date but instead I was told I didn’t follow the correct procedure.  My representative should have written to them to introduce herself, and inform them of these dates.   I protested that I’d spoken to the tribunal service and not been told any of this, but that it had been noted.  I was told that person had been wrong.

My only chance now was to appeal against the date in writing to the judge.  When I informed the representative of the outcome she was very suprised, despite having been in her job for years.  So I wrote my letter to the judge, explaining what had happened, and that due to my condition I’d find it tiring, painful and stressful to represent myself, and there was no one else.  I heard nothing, so I phoned them up a couple of days before the date and was told my appeal had been refused, but no reason had been given and I had no choice but to struggle on alone.

Once again it was a panel of three, but this time a representative from the Department of Work and Pensions was there in addition.  I was pretty worried – thinking he was going question me too, but he was fine.  He asked one question about how far I could walk, and otherwise remained silent.

The judge this time seemed motherly and nice.  She said my mum could talk freely and not to worry.   She asked if I had any comments about the GPs report.  I had put together a massive submission arguing with every point the decision maker had made, and then every point the GP had made.  I went through it and pointed out every single error.  At one point the Disability Specialist rolled her eyes and laughed openly at me as I spoke in a derisive.  They didn’t seem to be listening.

Next the GP then started his questions and went over my conditions, asking how things affected me.  At one point he asked how my memory affects me, which is a bit of a sore point with me.  I burst into tears.  He asked if I needed a break, but I was a total wreck.  I hadn’t slept, I’d been throwing up and shaking like a leaf.   I was wound up tight, ready to snap.  I just wanted to get it over and done with and so I pressed on.  He asked how I worked.  I explained I was doing seven hours a week, I could work from home if I needed to, and I had equipment in the office to assist.

The Disability Specialist came in, going over every detail of my day.  Again, I found pure ignorance.  Why don’t you get a commode to save struggling downstairs at night, she said?  I tried to explain there was no space upstairs for one.  I live in a tiny Victorian terrace.  There isn’t even a landing, and the room fits a bed, and not much else.   But even if I did have one, I would need help to get out of bed, and to empty it – which is still a care need, but she wouldn’t listen.  She kept suggesting things, without giving me time to explain why it wouldn’t work for me.   She obviously found ‘easy’ solutions to my troubles, and didn’t give a crap they were unworkable.

How can you drive if you have bad wrists?   I found resting my arms on my legs, and gripping the wheel at the bottom more comfortable, and I only ever drive very short distances and stop often.  How can you work?  With a lot of help, adjustments and patience.  They fired questions at me, then asked them again slightly differently, as if they were trying to catch me out.

What do you do in your spare time?  I paused here.  I had been warned about this question.  Say you watch TV and they will say your memory and concentration in fine, and that you can sit without moving for hours, even if it’s not true.  Say you do anything that requires moving, and you’re doomed.  I felt each question was a trap, as they weren’t going to take into account the reality of the situation.

So I said I didn’t do much at all, but I read sometimes.  She asked what was the last book you read?  I couldn’t remember, but then I said I thought it was a crime novel.   And then added a truthful statement – “actually, it was kind of funny – I got to the end when they revealed the killer, and I couldn’t remember who it was, so I had to go back to the beginning and find out.”  They all laughed, oh dear, she said.

The judge started asking about my mobility.  Can you walk over there?  She pointed to the other end of the car park.  I’d already stated at this point I could walk about two minutes with difficulty, so I said if I can do it in two minutes and it’s all flat, otherwise no.

The GP: How did you get in the building?  I parked and came in. His eyes lit up – so you walked up the flight of stairs?  Nope, I parked round the park in the disabled parking, and used the lift.

I don’t remember much more, but I came out feeling like I’d been through the wars, but that I’d put my case forward.  Yes I had care needs, and no I couldn’t walk without severe discomfort.

Instead of allowing me to wait for the decision, they said they’d put in the post and it would be with me on the Tuesday morning.   The Tribunal was on the Monday.  I pretty much collapsed and spent the rest of the day in bed in agony, and the Tuesday as well.   I hoped it would arrive on the Tuesday.

It didn’t.

The Wednesday was an agonising day from hell.  I was at work so had no way of getting to the post until evening.  I prayed it had arrived.  I was hopeful though – I’d been truthful, and answered every question explaining the difficulties I have.

I remember walking in after rushing home from work, to find mum had got home before me and opened it.  She stood with tears in her eyes and her face the only answer I needed.  They’d turned me down.

Credit to: Michel Meynsbrughen www.prestonotes.c.la

Credit to: Michel Meynsbrughen
www.prestonotes.c.la

This time I wrote to the judge to ask her reasons.  It’s the worst thing, the tribunal just say no –  but they don’t actually tell you why.  There is no set time the judge has to respond to requests, so it took about four months for it to arrive.

It began by laying out everything I said – she needs this, this and this help.  She has this condition.  Then it got to the reasons – she seemed to exaggerate everything she said, and we believe her mobility is fine; her mum only cares for her out of love, not need; she said she could read a crime novel, so her memory is fine; she got through the tribunal questions without a break, so her concentration/stamina is fine.

It pretty much led to a mini-break down.  I couldn’t face a system that called you a liar, and didn’t offer any reasons why and twisted the truth.   I was exhausted.  Mentally and physically.

I was turned down about a year ago now, and I am only just making my third claim.  I now have numerous consultants letters – fantastic ones that detail my condition, how it affects me, the fact I can’t cook a meal and why, that I’m in a wheelchair.

I had help someone who has Fibromyalgia, and spends a lot of time helping people with claim forms.  She put my needs into the ‘right’ words.  She has the knack of covering a variety of topics succinctly, without going on like I do.  I sent the form in, and two days later I had a phone call to say I needed a medical.

I phoned the Department of Work and Pensions up and asked why, with my seven letters, all from top London professors, did they need more information? Oh,  I don’t know, she said, it’s up to the decision maker.  Can I speak to the decision maker?  No.  I then asked her a trick question:  Will they be looking at my previous claims?  Yes, they’ll do that, she said.

BUT THEY ARE NOT SUPPOSED TO!!!!!!!!!!  Each claim is supposed to be a fresh one.  I have more than one new diagnosis, new medical evidence.  They have no reason what-so-ever for opening up the old claim forms, but there is no way in hell they have even opened my new claim form, the phone call came so quickly.   So clearly I was flagged up straight away, and I’m being shipped to a GP with no specialism in what’s a complicated set of conditions.

Anyway, the company behind the medical is called Atos, who have a terrible reputation.  I phoned them up to make the appointment, and they asked if I could go to the medical centre in town.  I said as long as it’s got parking outside, it’s no problem.

She then asked if I was in a wheelchair, and I said yes.  She then said oh well you can’t go to the centre, if you’re in a wheelchair or can’t walk unaided, we don’t allow people there for health and safety reasons.

So to make this clear – the building they use in Colchester to assess disabled people, either for Employment and Support Allowance (for those that can’t work) or Disability Living Allowance – is inaccessible for disabled people.  It’s like banging your head against a brick wall.

I will keep you updated to how my claim goes.  I’m trying to be positive, but drove past the tribunal building today, and I have this horrible feeling I’ll be seeing it soon.