This year my health has gone downhill somewhat. I suppose it has been doing that for some time, but when I finished my previous job I just knew I couldn’t do it anymore. I was a total mess, and my list of needs and adjustments from a job was getting longer than the job description itself.
In April I applied for Employment and Support Allowance for the first time. For those of you that don’t know much about it, it’s the benefit that replaced Incapacity Benefit – for disabled people who can no longer work.
There are three rates – the Assessment Rate, the Work Related Activity Group (WRAG) and the Support Group. If placed in the WRAG they admit you’re too ill to work currently, but feel you should be able to work with support in the future. People in this group have to attend regular work-related meetings with companies who receive bonuses if they can get you into work; can be forced into unlimited work-placements and can even sanction you. So in one breath they admit people in this group cannot work, and then force them too – and stop their benefits if they refuse. The Support Group means they feel you cannot work, and do not expect you to anytime soon.
The way the system is supposed to work is that you receive the assessment rate for 13 weeks, then either a decision maker at the Department of Work and Pensions (DWP) decides if you should go in a group or be found ‘fit for work.’ If they feel they don’t have enough information they can send you for a medical with ATOS. The assessment rate is lasting much longer than 13 weeks, however, which is probably because a large amount of people are being sent for the medicals despite copious medical evidence with their applications that should give the decision maker enough information to decide.
The medical tests themselves are highly controversial as it’s been shown those carrying them out are under a lot of pressure to find the person fit for work. The tests are extremely limited in scope, and most people are indeed found fit for work and then have to appeal it. In most cases this decision is overturned at tribunal level – showing the system is flawed. The whole process causes a lot of stress to the claimant and this horror vastly increased in October when they decided that if you were found fit for work and appealed, you’d no longer be paid the assessment rate while you waited for the tribunal – which can take up to a year to happen. The benefit starts at £56.80 a week for under 25s, and £71.70 for over 25s. This amount is what people have to live on, and removing it is beyond cruel.
In July I was told I would be having a medical. While expecting this, I was still annoyed as my claim included excellent medical evidence. My GP had written a long letter, as well as my Occupational Therapist. I also had a pile of letters from my consultants including the top specialist in Ehlers-Danlos Syndrome in Britain.
But I heard nothing for six months. When October passed my worry increased dramatically. I wondered what would happen if I was found fit for work and had no income while I appealed. I fretted about how I’d pay the rent for the accessible bungalow I live in, or pay for the treatment the NHS won’t cover.
I’ve also been through all this before with Disability Living Allowance and it wasn’t a very fun time. I pretty much had a mini-break down and had to go through two tribunals. You can read about that starting here and follow the whole saga under the tag ‘benefit claim’.
Having had bad news so often before, and living in constant fear of bad news from the DWP – I have a certain reaction every time I spot their distinctive letter I call the ‘dreaded brown envelope.’
I’m a little superstitious, even though I know it’s silly. I say the rhyme when I see a lone magpie, I throw spilt salt over my shoulder and I make a wish when the numbers on a clock are all the same. I’d been lying awake for some hours trying to sleep (not uncommon) when I spotted it was 2:22am. I made a wish. “Please. Please just let me know either way before Christmas.”
The next morning I was hobbling past the front door when it caught my eye. The dreaded brown envelope. My heart began to thump and my breath caught in my throat. I opened it quickly, and tried to make sense of it. Two words stood out to me – Support Group.
Relief flared through me, but as I read further it stated that I’d been placed in the Support Group from July – 30th November.
When you get put in a group a time of claim goes along with it, and I was aware that people have been placed in a group before and thought they were okay, only to find out that by the time they’d been told which group they were in, their claim had finished. Was that what had happened to me?
I immediately phoned the DWP and spoke to a nice lady who looked my claim up, and agreed that the letters were confusing, but those dates were referring to back pay. They agreed I should have gone into the Support Group from July, and up until November 30th had been on the assessment rate. So I’d get back pay up of the difference between the Assessment Rate and Support Group Rate until that date. Then from the 30th November my claim will run for two years.
I began to cry – and apologised to the poor woman. I explained I was just so relieved. She responded kindly by saying I didn’t have to worry about any medicals, or sending anymore sick notes.
I honestly can’t believe I got put into the Support Group first time and didn’t have to go through a medical. It seems incredibly rare with ESA not to have a medical, and even more so to be put straight into the Support Group.
I can’t even begin to put into words what this means to me. It should mean some financial stability during this time – until the Personal Independence Payments rollout.
Credit to: Cieleke
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/
It’s a fantastic feeling.
My DLA medical finally arrived yesterday. If you remember I had some difficulties over the location, first by them saying I couldn’t have it at the centre, before they said I could as it was accessible.
The same friend helping me with the claim came with me for moral support and to be a witness, as my last medical went so horribly wrong, when he put the opposite of what we talked about down throughout the form and declared me fine as detailed in the post ‘Applying for Disability Living Allowance Part 2.’
We arrived at the door and pressed the buzzer for entry. I was slightly worried at the big step into the building, but saw a sign with a wheelchair on, that said to ask for assistance. I assumed there was a door around the side or something with level access, but when the receptionist came to the door she informed us that was actually the only door. So yes, I did have to get my wheelchair up that step and the building for accessing people with disabilities did not have wheelchair access.
I asked if there was a ramp, and the receptionist said there wasn’t. My friend pointed out we’d informed them I was coming in my wheelchair, and the receptionist snapped she hadn’t been told. I then asked if she could help me, and she said she wouldn’t. It’s important to note the lady helping me is also disabled, and is on two crutches, so there was nothing she could do. But instead of recognising this, the receptionist turned to my friend and said “You’ll have to tip her in.”
My friend pointed out she physically couldn’t, and finally the receptionist said she’d see if security was about to help me.
This whole issue made my anxiety levels which were already ridiculous jumped to heart palpitations with the urge to curl up in the corner of a room rising. I was embarrassed, and just wanted to abandon ship.
The receptionist returned to say there was no security in the building, and that I’d have to get myself in. Again, we both turned to stare, before she decided to go and get the doctor to inform him I couldn’t get in.
Luckily at this point a really kind man walking past stopped and asked if I was okay. I explained I was trying to get into the building, but couldn’t. I thought it could probably make the step in the electric wheelchair, but I couldn’t do without someone standing behind just to steady it in case it tipped. My wheelchair has two small anti-tip wheels at the back, that actually make it more difficult going up steep steps, so he managed to adjust them out the way, then helped me up. Thank goodness for human decency.
The waiting room had a lot of chairs in the way, so I decided it was safer to just to wait in the corridor. The doctor came and got my notes from the receptionist and went to read them, while she came to look at my ID. The letter said I needed my passport, or three other forms of ID. While fishing them out, she said I only needed one, and that she had no idea why it said I needed three. I explained her we weren’t blaming her for the building, we just couldn’t believe they hadn’t made provisions for a wheelchair. She agreed and said the building was terrible.
The doctor then called me in, and we both went in. He seemed confused as to why I had been called in for a medical having read my information, and apologised for me having to come in. He then asked if I already had DLA, and I said no. First claim? Nope. Third. He seemed shocked, and asked if they’d seen all my medical evidence. I explained they hadn’t seen the exact information he had, but I’d had other evidence and knew what was wrong with me.
He then said although he could write a whole report on my medical evidence alone, he still had to go through the form with me. We went through everything, and he did a few minor physical tests like a grip test which he said was poor. He didn’t make me stand as he realised it would be painful.
At the end he said he didn’t make the decision, and they are turning a lot of people down, but he would do his best for me.
I would love to be optimistic at this point, but I have just been screwed over too many times before with other medicals and tribunals that I can’t be. I need to have the decision in my hand before I let myself think anything.
Now all I can do it wait.
Waiting. Credit to Jesse Therrien www.jessetherrien.com
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.