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 (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.
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.
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
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.
This a tough one, and one I’ve been avoiding. Just the words ‘Disability Living Allowance’ makes my stomach turn into a big knot, and a nauseous feeling to pass over me.
There is a perception that disabled benefits are easy to get, and that most are fraudulent so I just wanted to talk about my experiences so far.
For a start – the basics of Disability Living Allowance (DLA). It’s a benefit for the under 65s (over 65s get Attendance Allowance unless you’re already in receipt of DLA when you turn 65). It has two components to it – mobility, and care. The idea is that they aren’t really meant to worry what’s wrong with you, but how it affects you. So a person can get either one component, or both. The care part is then split into three – low rate, middle rate and high rate. The mobility has just two parts – low rate and high. Low rate mobility is meant to look more at the non-physical side of mobility (bear with me here!). This is usually around someone not being safe to walk without supervision i.e. they have a condition that means they struggle to understand danger, or perhaps they regularly get dizzy and may end up in the road, or may sometimes refuse to walk at all due to a condition such as Autism. The high rate is meant for people that (usually physically) can’t walk at all, or is “virtually unable to walk without severe discomfort, or at risk of endangering your life or causing deterioration in your health by making the effort to walk.” It can also be awarded for sensory conditions.
If someone is awarded High Rate Mobility, they can join the Motability Scheme and swap their money for a car, or wheelchair or scooter. A car can be adapted to your needs either for free, by a grant or by self-funding.
I’ve tried to summarise it simply, because it’s actually a very complex benefit with pages and pages of rules and laws, that they frequently completely ignore. Okay, my bias is showing already!
One other important point – the benefit is for the additional costs of being disabled. You can work full time with it and still quality.
I first applied some years ago. I was at university when I did so, which didn’t help in hindsight. A lot of the things I had a problem with at the time I found easier at university. At home my bathroom is downstairs, my bedroom is upstairs. At university my bedroom was downstairs along with the bathroom, and it was right next door. My bath is a pain in the bum to get into, but at university it had an actual shower with a low step. My care needs were no where near what they are now, but my mobility was fast going down hill, and I was struggling on by the skin of my teeth.
I was immediately turned down and so I appealed and went to tribunal. By the time it got to tribunal I’d finished university and was back living at home.
The tribunal was interesting. They started out seemingly pleasant, but soon got down the business. A tribunal is made up of three people – a judge, someone with medical knowledge (usually a GP), and someone termed a ‘disability specialist’ – at that time someone who works with disabled people.
Credit to Jason Morrison at http://www.creationcafe.com
First of all the GP argued with my diagnosis – despite not being a rheumatologist or specialist in any way. Without examining me, he decided I couldn’t possibly be hypermobile.
The disability specialist was rude, and ignorant. She asked silly questions like why my car wasn’t adapted (because I need high rate mobility to get it adapted, or thousands of pounds?)
The form for DLA is very long. It tends to work by starting with tick boxes – for example – do you struggle with walking yes/no. It will then ask in what way – i.e. do you limp, walk slowly, etc and then finally has a box for you to explain. (These aren’t the actual questions, by the way.) It asks the same questions in slightly different ways over and over, and there are multiple tick boxes on each page.
At one point the judge asked if I needed help during the day. I said yes. He asked me to turn to a certain page of my claim form. There was a hush while everyone thumbed through the form. He asked the question again and pointed to a single tick box on the form that I’d left blank. I hadn’t said I didn’t need help, or that I did. It was blank. However every other box on the page was filled in, and there was a list of ways I needed help in the text box, so it was clear it simply hadn’t been ticked in error. He then asked me to turn to the final page where the declaration is. He slowly read it out – that to the best of my knowledge everything was truthful in the claim form. Did I agree? Yes, I said. But you haven’t ticked the yes box, he said gravely. So it’s false. I felt like I’d just committed a crime.
At another point he began questioning me about distances. I explained to him I have dyscalculia, so distances mean nothing to me, so could he use time instead. (I.e. can you walk for 30 seconds, or whatever, because that I can understand) Instead he angrily kept repeating the same question using distances. My mum saw I was getting upset and tried to help me by explaining the distance, but he snapped at her to be quiet and ‘not to help me’.
The questions about how I coped at university kept coming up. I tried to explain the above – the ways I’d managed, the support from friends – but it was just rejected. The questions continued in the same vein, until they asked me to leave for a few minutes, and then called me back in to turn me down. I can’t say I was surprised. I decided I would apply again, as my condition had continued to go downhill anyway.
My experiences with my second claim can be found here.