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.
Ive just been for my first medical… basically same thing.. awarded nil points … just because i said yes to similar things like yes i watch the television soaps,,, etc ,, i could lift my arm up above my head in medical., but thats not to say i can lift my arm up above when my tremors start and ive just washed my hair and i am shaking constantly and cant dry my hair, they dont take these things into account, even though i told them all this on the day, ive got ibs and told them same things i cant control my bowels some days i cant leave house and if i do i need to get back quickly to change if ive lost control, no points awarded yet again,,, its a bloody awful system… they just dont care and dont want anyone on the sick full stop, and if they can stop anyone claiming they will.. ive just re appealed.. and god knows how long it will take to sort it ,, but ive got to go through the whole process all over again .
Hello Tracy, its awful. Keep going. I have tried for a long time for E.S.A. and finally got it last week. I am in England. Lucky for me, I suppose, I have depression and anxiety, aswell as having toilet accidents everytime or most times I go out of my house. I am 58 and have suffered since age 9. Mine could be coprophobia, similar.I am desperate to talk or meet people with my problems, but don.t know how to ??
Hi Luci,
Thanks for your honest story. I used to have predominantly D but but the 4 years since I developed IBS, it has changed to predominantly C (mine came on after a gastric flu type illness) I started a degree as a mature student as although I knew I couldn’t work, I may be able to manage a few lectures a week. I was very wrong, and despite a letter from my doctor, I was more or less forced to give it up as they wouldn’t accept it as extenuating circumstances. My situation is different as although I am unable to work (or go on holiday, or make arrangements etc) my partner earns enough to support both of us. I tried to find some info on claiming benefits as my point of view was that I had aid into the system for 25 years and I KNOW my case is genuine. I gave up at the first hurdle as I was told unofficially that I would need to prove that I was fecally incontinent at least twice a day! – yes, I would have to state and possibly prove that I soiled my clothing a least twice a day to be considered, and that the Rome III criteria is not given consideration. Another case of the UK being in the dark ages.
My partner insists that it isn’t worth putting myself through the humiliation as we can manage financially – at the moment anyway.
This all sounds pretty scary I have diverticular disease and am off work – I am 55 years old and still coming to terms with it – I have had problems since I was primary school age but only now been diagnosed with this – cant get my head round the diet …
Gillian,
As you have been diagnosed with diverticular disease, you will probably find it easier to get help if you need it than somebody diagnosed with IBS, which I think is still regarded by many doctors the way ME was until recently (and still is by some) – ie my doctor thinks I should be over the moon that life-threatening disease has been ruled out and that it is ‘only’ a functional issue. I’m sure if they had to spend a month living with it, they would have a different viewpoint. One minor example is last week I was invited to the xmas party for a charity I volunteer for. The organiser said she needed exact numbers for catering – I had no choice but to decline rather than ‘let them down’ on the day.
We all know we try to lead as normal a life as possible but even family & friends don’t really understand how we feel. I try to keep my ‘bellyaching’ to a minimum even with them, although a good day is the kind of discomfort that would have ‘normal’ people complaining of feeling ill.
Hi Tracy,
I hope today is a good day…. I’m pretty sure that the evidence I collected plus the symptom diary I kept for 6 months helped alot. You can never have enough evidence. Its terriby hard as most medical officials don’t like writing letters, If thats the case ask them to write to you summerising your symptoms, have it sent directly to you and submit it as evidence yourself. But above all do not give up. Bite your lip and tell them like it is. Good luck to you Tracy.
Luci x
Hello Christine,
I know how you feel, If its any use to you I’m happy to chat, either via e-mail, or face book messaging, if you have it? I don’t check my e-mails very offten, probably only once a week, but I will get babck to you
Luci x
Hi Mark,
Honestly, if your managing financially you probably won’t qualify for help anyway. If you felt like a battle you could try but I doubt you’ll get anywhere. I do sympathise with you though. Its a rough illness that gets little or no sympathy because its either seen as being ‘all in your head’ or its a taboo subject. I battled for so long because it really was a case of putting food on the table for myself and my daughter and paying the rent or being homeless, if its not life ot death I’m not sure its worth the fight, and as you say the humiliation. Good luck for the future Mark.
Luci x
I have read with interest all of these comments and stories. I have to say that I feel uncomfortable about most of them. Firstly, we should all be extremely grateful to have a free health service and a benefits system. There are millions of people in the world who do not have access to such things. It is therefore very unfair to make comments such as the “the UK are in the dark ages” as this is simply not the case. We are all aware that unfortunately some people will try and defraud the system and therefore it is only right and proper that certain checks are in place. Unfortunately IBS is a very difficult condition to diagnose and one that can range from being very mild to very severe and for that reason alone it would be completely wrong to allow benefits for every person who has IBS. However, when IBS is in the extreme I do believe that people should be given financial support however I hope that those people still search earnestly to try and find relief so that they can return to work as soon as they can and hence support the system so that others can get help. One should never give up trying to find ways to manage IBS and I have come across many people who have found relief after decades of suffering. I hope that all of you are able to find relief to your suffering as quickly as possible and that if absolutely necessary you are given financial support when needed but I also hope that people do not take advantage of the benefits system.
Steve,
I find your post quite insulting. I think maybe the heading of ‘beating the system’ could have been worded better, but that isn’t what it is about. It is really about trying to get the system to recognize how much pain, discomfort, depression, fatigue etc. that many people with IBS suffer. I stand by my statement regarding the UK being in the dark ages. I understand there are many people in the UK claiming benefits under false pretenses, but there are also many people with IBS who are at their wits end and unable to cope – who are unavle to get help because they don’t ‘tick boxes’ – as we know, many civil servants are totally unable to ‘think outside the box’.
Mark,
If you found my post insulting then it is clear that it doesn’t take much to wind you up because my post was certainly not meant to be insulting but only to put a little balance into the debate. In fact it is you that has been insulting towards Civil Servants which is rather unfair. It should also be noted that being a Civil Servant with IBS would be a good combination as they operate flexitime and workers are paid when having sick leave. Your remark about the UK being in the dark ages is exagerration to the extreme particularly when one oconsiders that most people on this planet have little or no welfare state. As I said in my post, it is only right that there are checks and balances in place because not everyone with IBS has it severely. Also if a person is able to sit for most of the day watching TV or using their computer then it is quite reasonable to expect them to work in a place with an understanding employer. I do agree that IBS can be so disabling that work is not possible and in these instances financial help should be given.
To Steve
I don’t know how you can defend the UK Government’s use of an outfit like ATOS. Of course there are people defrauding the system (just like millionaire tax dodgers and dodgy bankers), but this is not the answer. They are using nonsensical, NON-MEDICAL criteria to deny ill people the financial help to live. There are now cases of people dying while going through this systematic abuse. One man died the day before another ”assessment.” He had heart trouble, was turned down, and the stress of it all saw him off. Another man was refused Jobseeker’s Allowance because he cannot commit to 40 hours a week due to needing to attend chemotherapy for a brain tumour. Yet he has been turned down for ESA. How, Steve, do you propose he lives?
You do realise that GP’s are now incensed and having to spend their time writing letters to support these poor patients. You do realise that, don’t you? Also, many of these claimants were once fit and well and have paid into the system all their life. They didn’t ask to be ill.
Steve, I think you should read Jung Chang’s White Swans, and you will see that this aspect of life in today’s UK has more to do with Mao’s cultural revolution than benefit ”reforms.” It is crass, it is cruel, has nothing to do with truth or integrity, has bullying as it’s core philosophy. One day historians will look back on this pathetic period and consign it to the bin of insane ideologies.
What is additionally worrying is that there is not enough in the media to expose this unfairness, or are they ”reforming” that too?
Brenda, I was merely pointing out that we in the UK should count ourselves very lucky to have a welfare state. I have friends who live in different parts of the world who have no welfare state at all. If they are sick and cannot work they get nothing and are expected to pay for their healthcare. And then of course there is Africa where 3o,000 children die every single day, so we are very lucky indeed.
When you talk about millionaire tax dodgers and dodgy bankers it sounds like you are believing the hype of union representatives because following the advice of your accountant is not being dodgy at all as millions of people do this every year; there is of course a huge difference between tax avoidance and tax evasion – one is illegal. With regards to the bankers, as far as I am concerned they should be paid as much as possible because 50% of it has to be paid in tax, and after all something has to pay for our health service and welfare system.
We have to have a system in place to make sure the welfare goes to the people who really need assistance and unfortunately there are many dishonest people who try and defraud the system so it is these people we have to thank for the system being ‘policed’. I am glad that the welfare system is ‘policed’ in fact I would like it to be more rigorous so that more could be paid to those in real need.
Before you start comapring the UK to Mao’s China I suggest you go and live in China for a few weeks to see how lucky you are to live in the UK.
Guys, this isn’t the place to have an argument about politics or the benefits system. Please keep the discussion focused on IBS. Thanks.
Hi all,
Ignoring all of the above political comments, and only to up date those who are interested…. after 2 years of fighting to be awarded ESA and 2 tribunals, after only 3 months of receiving ESA at the correct rate (i.e not the lower rate awarded while you appeal) the DWP have seen fit to re-assess my claim. Which basically means the whole process begins again. I could be called upon, yet again, before ATOS to be ‘medically judged’ theoretically (I’m assuming they haven’t changed their views about IBS) turned down, again, appeal, again, re-claim… appeal… be awarded, again…. only to be re-assessed 3 months later…. still want to talk about a waste of tax payers money? I’ve had IBS – D for over 10 years… How wonderful would it be to be miraculously cured in 3 months.
I’m really not sure I can go through all this again. I think that’s the plan. I think that’s what they do, I really do.
All the best,
Luci x
Luci, I’m so sorry to hear that. That sounds completely ridiculous, although in keeping with the stories I’ve heard about the insanity of the benefits system at the moment. I mean, clearly patients should be reassessed at certain intervals, but going through the whole process again after three months can’t possibly accomplish anything.
I really hope you find the strength to get through this again and get the support you deserve. And yes, please just ignore the political comments on this entry – there won’t be any more, I promise. This is a place for support and solidarity from people who understand what IBS is really like.
Thank you, as ever, for your support Sophie. I have to say as I am in the ‘work related’ group of ESA I was hoping for, (and assured I would get) help in seeking suitable work that was perhaps part time/flexible with an understanding boss or possibly from home… I was looking forward to that, but instead I’m being re-assessed. I am bitterly disappointed and the extra stress it brings has me on a complete downer which is making my IBS soooo bad right now. All I can do is start filling in the endless forms again and try to get the help, not just financial but the help I desperately want and need to do something useful as a productive member of society, work and put something back. It feels as if the system would rather hound me to death re-assessing me so I give up and they don’t have to help me find a suitable employer or suitable work. ??? I don’t get it.
They said I would get help to work, they simply have not done that. Every employer I have spoken to will not employ someone like me, who needs a very understanding boss, especially when there are so many able bodied people out there who do not need regular time off etc… I despair I really do.
Sorry if this sounds like one big whinge, I just need a little help and a chance. I’m just not getting that at the moment.
All the best to all out there…
Luci x