Can you get sickness benefits in the UK if you suffer from IBS? The answer to that is yes…but not without a fight, it would seem. One of my lovely readers, Luci, has very kindly shared her experience of applying for employment support allowance (ESA), the sickness benefit that replaced incapacity benefit in 2008.
And in case you were wondering, one way to tell if someone is sick is to check whether they’ve had a shower and painted their nails. Read on if you don’t believe me…
Sophie: Hi Luci! First of all, can you tell us a bit about your history of IBS?
Luci: I have had IBS-D for about 10 years. I don’t know what set it off but when it started it was very mild and infrequent. I thought I’d eaten something and had mild food poisoning. I went to the doctors after a few months and three or four attacks and I was told I had IBS. No examination, no referrals…I was given Fybogel and sent away.
My symptoms gradually worsened over the years and the last three or four years have been horrendous. I sometimes have diarrhea 10 times a day with abdominal pain that stops my breath. Sometimes I can barely crawl to the bathroom.
Sophie: That sounds so tough – IBS can be so difficult to cope with. Can you explain a bit about the circumstances that led you to apply for employment support allowance (ESA)?
Luci: Three and a half years ago I was told that now my daughter was 12 I would not be allowed to receive single parent income support and I would be expected to take a job or lose the benefit. I had to go to the job center to apply for jobseekers’ allowance. I was told I would have to attend interviews regularly, attend the job center every two weeks to sign on, and be seen to be actively looking for work. If I turned down any job offered my money would be cut, which would mean my housing benefit would be cut and my home put at risk.
I was terrified. I had to tell this total stranger about my IBS, in detail, which was intensely embarrassing for me. She informed me that if I felt I was too ill to work then I should be claiming employment support allowance or ESA. So that is what I did – and so began the battle, just when I was at a very low ebb and least able to fight.
Sophie: Can you tell us about the application process for ESA?
Luci: I filled in a form (which was about the size of War and Peace!) and started receiving a low, basic rate. I was told that if I passed the medical the money would go up. About five months later I received a letter informing me that I would need to attend a medical in Brighton, about 45 minutes drive away from Eastbourne where I live.
I phoned the Department for Work and Pensions (DWP) to explain that I barely leave the house, don’t even travel into town without someone with me, don’t own a car and don’t use public transport due to my IBS being sudden and unpredictable. They told me I would need a doctor’s letter stating this, and getting that was a job in itself as I needed to organize a lift to and from the doctor’s.
The response to the letter was that they didn’t deem it necessary to give me a home visit but would pay for a taxi to and from the medical center. I was absolutely dreading it but they made it very clear that if I did not attend I would automatically fail the medical and would lose the money.
My advice to others – do NOT personally attend medicals! If you normally do not travel you must push for a home visit. If you attend the medical center and you then claim you do not normally travel you will fail the medical. ‘You got to the medical, so you can go to work’, so don’t struggle! Insist on a home visit. I wish I’d known that. Needless to say, I failed the medical.
Sophie: What happened after you’d failed the medical Luci?
Luci: I appealed. This is a daunting process but while your appeal is being processed they have to pay you. It’s a very low rate but at least I knew we would be able to eat and my rent would be paid. Six months later I received a tribunal date.
I had to go to a very posh hotel conference room in my home town. There was a judge and a doctor in attendance. I was asked several very personal questions over about half an hour. I had as evidence a letter from my GP who knew me very well stating that it would be quite impossible for me to attend work with any regularity due to my IBS being so severe and so unpredictable.
The doctor commented that (and I quote), ‘You seem clean and washed, your nails are painted, I think you are simply lacking confidence and a job would be good for you.’ That was that. I had failed the appeal. I was totally devastated, utterly undermined, and I felt like a lazy, workshy scrounger.
I phoned the DWP and as I was now suffering from depression and worsening IBS I was told to reclaim, which you can only do if your condition has worsened or you have a new condition. And so the process all began again. I was absolutely as low as I could be.
I was sent, over the next six months, to a dietitian, a gastroenterologist, and for cognitive behavioral therapy or CBT, all the while trying tablet after tablet to combat depression. And all the time I was dealing with ever increasing IBS symptoms. No wonder I was depressed! As far as the specialists were concerned there was nothing wrong with me. This conclusion was not going to help my next appeal…
Sophie: How did you prepare for the appeal?
Luci: I started to collect evidence. Letters and summaries from all the specialists I had seen. Most did not want to write letters and most would not commit to directly saying I could not work. Those that did would say things like, ‘It would be difficult’ or simply wouldn’t say either way. So I started to keep an IBS/depression diary: details of toilet visits, pain, quality of life…everything. It was not easy. I wanted to be brave and try to put on a brave face and constantly had to remind myself to stick to the facts.
I submitted the diary as evidence. I insisted on a home visit for my next medical, asking my doctor for a very specific letter stating that a home visit was needed. I did not try to ‘be brave’. I was very ill on the day and as uncomfortable as it was I did not get dressed, I did not tidy up. It wasn’t easy. I so wanted to keep going and carry on despite the pain, but I also wanted to show how I would be normally.
When the doctor arrived I was marked down because I got to the front door to answer it within a few seconds and had no difficulty walking from the door to my sofa, 10 feet away from my front door. I was marked down because I offered the doctor a cup of tea, which I made properly with no problems. I was marked down for watching TV (showing I could sit for long periods without discomfort), I was marked down because I have a dog and usually managed to walk him for five minutes a day. It’s a crazy, crazy system.
Needless to say, I failed the medical and received only six of the 15 points I needed to qualify, so again I appealed. After about five months I got the new appeal date. In Brighton.
I got yet another doctor’s letter stating I could not attend. Another two months went by and I got my hearing moved to my home town. Not easy, but better. Do-able with help from a friend with a car and lots of patience!
I was preparing to face defeat as I simply could not do this anymore. About two years had passed since this whole saga began and I was truly done. I was in the conference room with a judge and a doctor again. I was asked a handful of questions, 10 minutes, no longer. They thanked me for attending and said, ‘We are both in agreement that you should have been given ESA last year and can’t understand why it was disallowed.’ And promptly overturned the decision and awarded me ESA. Just like that.
I was so shocked I burst into tears. They were very nice and gave me a tissue and allowed me a few minutes to compose myself. I’m now waiting (three weeks later) for the DWP to sort out the paperwork, but hey…I won!
Sophie: What difference has receiving the ESA made to your life?
Luci: I keep reading the letter, over and over! I think I’m going to frame it! I can now face my future without worrying about losing my home or where the next meal is coming from. It’s that simple. I am in the work support group of ESA which means I will have a case worker who will speak to me regularly and work out if there is any work I can do around my condition.
It’s not compulsory work, they don’t cut your money and they very much work around me, which is what I want, to feel I am at least some use to society as a whole and not just ill and forgotten.
Sophie: Are there any tips you can give to other people who are applying for ESA?
Luci: Get the evidence. Any and all. Pester, telephone, visit in person, but get it! Don’t struggle through. They need to see you for what and how you are. Yes it’s embarrassing and very uncomfortable but they must see you at your worst. Don’t say ‘I’m fine’ when you are not!
It has been the most difficult time for me but all things considered I have now got the support and help I need, so as much as I would HATE to do it all again I have to say it was worth it, although you may have got a different answer during the process!
Sophie: Just one more question – I keep reading terrible things about the company ATOS that carries out medical assessments for the benefits system in the UK. Do you know if you were assessed by ATOS?
Luci: Yes, it was ATOS that carried out my medical assessment, and yes, they have an awful reputation. Many ‘trick’ questions like ‘Do you enjoy watching the soaps on TV?’ If you answer ‘yes’ to this question it is assumed you can sit comfortably for half an hour so are capable of work.
You don’t even realize at the time that these are questions relating to your claim/medical, it’s done in such a way that you think the doctor is simply being chatty and nice. Don’t be fooled! It’s a terrible system.
They don’t take into account good days and bad days so, when you are asked questions about your health you need to tell them the way you feel on a bad day. It’s a real minefield. As I said before, if you attend your medical assessment at one of ATOS’s medical centers you’ve probably already lost. If you can get there you can get to work. Crazy. Hope I haven’t rattled on too much!
Sophie: Luci, thanks so much for taking the time to share your experience. It’s awful that ill people have to go through this kind of ordeal just to get some help, but I’m so glad your appeal was successful in the end.
If any readers have experiences of the benefits system in the UK or elsewhere, please do share them in the comments section.