e.s.a. stopped just like that

[Mandypandy1969]

hi all, I was just wondering how many people have had their e.s.a. stopped. no way can I manage to hold a job down due to the great fatigue and aching heavy limbs.

[Hidden]

I’ve just learned today that I’ve been turned down for PIP. Won’t be appealing because it would stress me out too much. I was way off the mark - I just couldn’t fit my disease in with their questions and am too proud and too honest to try to be strategic - and most of all too fatigued!

My husband is looking into ESA for me earlier after getting the letter. I was on contributory ESA in 2015 when sick.

No answers for you but I too couldn’t work - I can’t stand up for longer than 30 seconds, can’t bear the sound of phones, voice goes all the time, and eyes too dry and fingertips too sore to cope with computers all day. Very tired all the time and I wouldn’t last a day in the work place. I’m self employed so maybe have to go back to contributory ESA?

[Lizard28 in reply to Hidden]

Hi, I've just been awarded contribution based esa but had to fill in another form to see if I could get the supported esa, was told you can only get contribution based esa for one year but longer if you get supported one. Like you I won't appeal if I get turned down, they make you feel you are begging. I was told to try for income support but they kept wanting more and more information, I felt like a criminal. They got me on a really bad day and I told them to stick it, they stressed me out too much. Do you have to keep sending doctors lines for the year when you have been awarded with it. Did they just notify you one random day that it was stopping? It's like an invisible disease, my mobility is ok at the moment but I do have breathing problems, but it various from day to day. I also think I'm too proud when I fill in the forms, I know I won't get the supported one.

[Hidden in reply to Lizard28]

Oh you sound so like me! Both my sisters are profoundly deaf from birth and both get PIP and yet they both have good jobs and no chronic illness.

They don’t understand why I won’t fight for this but it’s only going to make the terrible inflammatory fatigue and feeling of hopelessness worse so I am bailing out. This is why our system is so stacked against those of us with invisible illness. If only we could do this once through our GPs then we would probably not have to bother them nearly so much. If we have statemented/ diagnosed progressive autoimmune diseases then why should we have to prove ourselves over and over in order to qualify???!

[Hidden in reply to Hidden]

Ps and yes I had quite a battle to get my old GP to sign the forms and back date them as required. I made him change chest infection for pneumonia and told him that DWP official had called him “mean” - all true I might add!

He got pink and defensive as I count him as a friend as well as a GP so it was awkward but I’d had UTI sepsis, pancreatitis and later a post op wound sepsis with autoimmune flares in between!

[Lizard28 in reply to Hidden]

Very very true, I wrote a two page letter details how this illness affects my day to day living, I was in agony when I finished it, hope they can read it till the end, I was in tears putting it down on paper when I read it back, but as far as the other boxes, I ticked I know it won't be enough. I've only two more years till I retire, who is going to employ me as I lost my job through my illness last year, I have three hospital appointments in next few months, who knows how I will cope next year, take care xx

[Mandypandy1969 in reply to Hidden]

on the letter I scored 0 points. lupus wasn't even mentioned as an illness I have now got

[Hidden in reply to Mandypandy1969]

On the PIP letter of yesterday I scored 4 points overall.

My husband thinks it’s a good thing in the long run as don’t want to be fretting about being spied on during days I’m well enough to go for a nice walk . I’m proud of my attempts to keep fit and well against the odds. They should award PIP to people who try their hardest to look after themselves despite progressive illness - not penalise us for it?

[Mandypandy1969 in reply to Hidden]

I was only in the high rate e.s.a. I didn't even bother with p.i.p as I didn't want to get stressed. now I am stressed as I have been given 0 points for e.s.a. I wrote about my lupus on an a4 piece of paper. none of this was mentionef/ignored. it's all to do with physical illness which all they were concerned about was being able to do certain movements. they haven't got a f...ing clue what I have to live with day to day with the fatigue/ aching and lead weight limbs. climbing stairs is a nightmare. have to keep stopping as my legs feel like lead weights. I use lifts now. I am getting really stressed as I have now been told my e.s.a. has been stopped and I am fit for work. no way can I hold a job down.

[Mandypandy1969 in reply to Hidden]

I know. what are you supposed to do? sit at home all day. I don't go for a walk very often as I am so fatigued. when I feel ok, I do go for a walk like you do and try to do a bit of weeding. I have no strength in my arms or legs. I struggle to get motivated. it takes a good couple of hours for the aching to ease a bit. hydroxy not doing much at the moment. been on them six weeks but was told it could take up to 3 months to kick in. I only get given Quinoric. won"t give me zentiva as do the same thing, same ingredients. the taste is awful especially when you have a dry mouth and can't swallow it straight down.

[Buffy14 in reply to Hidden]

I would appeal the pip award get help from welfare rights at your local council they do it all for you and go with you to court if it comes to that something citizens advice don't do . You say you are going to claim esa instead well let me tell that's just as bad , look back at all the posts regarding esa , you have to have an assessment just as you do with pip , you've started the pip claim so carry on instead of starting over with the dreaded esa forms and Assessment .

[Mandypandy1969 in reply to Buffy14]

I don't even get pup. didn't bother applying as I can't handle the stress. bad enough getting accepted for e.s.a for the last 2 and a half years. I will take your advice and thank you, I will make an appointment with welfare rights. xx

[Buffy14]

If you look back on previous posts regarding esa you will find that many of us on here have had our esa stopped and despite our numerous illnesses been given zero points it's an absolute joke . Do not just accept it you must appeal when you get your report if you haven't had it yet . Many people on here will tell you that they lie on these reports to get people off benefits I was totally shocked when I read my report . They try to make out you are lying for example I lost my hearing in my right ear following surgery to remove a tumour , they made several comments implying that I was lying about the deafness and actually put ' she heard a conversational voice in BOTH ears and wasn't even wearing a hearing aid ', I had my eardrum removed so nowhere to put a hearing aid and when you have had your ear connection to the brain cut in surgery there's nothing a hearing aid can do to restore your hearing . They don't put anything you say in reports , say you said things you didn't say and they miss out medical conditions you have . One lady on here had dangerously high blood pressure at her assessment and was advised to go to a and E by the assessor yet when her report arrived they didn't even mention the fact she had high blood pressure and she got zero points . Go to welfare rights at your local council an appeal this .

[Mandypandy1969 in reply to Buffy14]

I was given zero points aswell. I am going to appeal. I can hardly move first thing in the morning with the aching all over. takes me ages to get going as fatigue is so bad. been on hydroxy for 6 weeks. felt no benefit yet. I was told could take up to 3 months. had 2 courses of steroids. 1st lot, felt like a new woman. 2nd lot, didn't do hardly anything. back to square 1. do you think its worth getting in touch with rheumy nurse and talk to her. I am getting stressed as I can't handle having to go job center. I have been on e.s.a. for 2 and a half years for bipolar. I was diagnosed with lupus in April. the only relief I have had was when I was on the first lot of steroids now expected to go back to work. I couldn't get up for work, let alone holding a job down. bloody joke for all of us on here. x

[Hidden in reply to Buffy14]

She didn’t really represent me innaccurately. Your hearing story is shocking but I have no tangible disability to demonstrate. Fatigue is impossible to demonstrate. My new consultant has only met me once as I’ve relocated - and she did mention severe fatigue in her letter which I copied.

I represented myself innacurately unfortunately. I don’t think there’s much I can do about this now without completely contradicting myself.

As far as my doctors and consultant’s are concerned I appear to do fine in terms of fitness - but they know I won’t be fine because of my blood results and the nature of my Sjögren’s. I attached all relevant letters and my latest blood results showing high levels of inflammation. I’m on so many medications and she could see this. She knows I’m on three different laxatives and awarded 2 points for bathing and toileting difficulties.

It’s all about spoons (spoon theory)isn’t it? Some of us can do things but we pay a very high price for doing them. My husband does many of the menial tasks in our household so that I can spend my very limited energy working as a freelance, volunteering and managing my health problems effectively. This good management takes up nearly all of my spoons so I have hardly anything left for family and friends or my work.

I can walk slowly to the doctors and back most of the time (once or twice a month) and I do manage the treatments for my conditions well myself. But doing this is like a full time job. So I couldn’t also have even a part time job and manage my health and care?

If we can do things but the price is usually very high then they should redesign the questions to say “if you do this how will this impact on you the next hour/ day/week?” There should be a section designed to reflect the impact of spending our meagre energy and resources on basic self maintenance - which leaves a life less than half lived compared to most people of my age and stage. Allowing for time management is key to enabling us to increase our independence. “How much of your life does all this take up?” Should be a question on the form - points awarded for the amount of time self managing our conditions/ diseases takes.

After all PIP stands for personal independence payments and if I had even the basic rate I would become significantly more independent than I am now.

[Mandypandy1969 in reply to Hidden]

I didn't even bother applying for pip. I have been on high rate e.s.a. for 2 years because i have bipolar. lupus was diagnosed in April. can't believe it. xx

[Paul_Howard Partner LUPUS UK in reply to Hidden]

Hi Hidden . The key word you need to pay attention to in these forms is 'reliably'. The Guidance issued by the DWP states that you need to be able to complete an activity ‘reliably’ in order for it to apply. Initially, the government refused to put this guidance into the regulations themselves. After considerable pressure it has been incorporated, although the word ‘reliably’ itself is not included.

According to the guidance, ‘reliably’ means whether you can do so:

• Safely – in a fashion that is unlikely to cause harm to themselves or to another person.

• To a necessary and acceptable standard – given the nature of the activity.

• Repeatedly – as often as is reasonably required.

• In a timely manner – in a reasonable time period.

The DWP guidance states that ‘pain, fatigue, breathlessness, nausea and motivation’ will all be ‘key factors’ in deciding whether an activity can be done reliably.

[Mandypandy1969 in reply to Paul_Howard]

every day is different. since I had the first lot of steroids which made me feel fantastic, I have not felt much cop at all even after steroid injection and another course of steroids. steroids only lifted my mood a bit the 2nd time but didn't help with aching,heavy limbs and fatigue. I have been on hydroxy for 6 weeks and no relief yet although I have been told that it can take up to 3 months to start helping. i am feeling really pessimistic and having my e.s.a. stopped is stressing me out big time as I now have to sign on to j.s.a. leaving me with no money after paying my rent, bills and fuel as I need my car for independence.

[Hidden in reply to Paul_Howard]

Thanks so much Paul. In this case my husband is pointing out that I should appeal because I can’t reliably do things repeatedly or in a timely manner. Also “safely” should have a query over it for me because my neuropathy has had a significant impact on my balance and coordination where crossing roads and navigating busy places full of bright lighting and noise are all concerned. I think I said this on my form but don’t think I reinforced it in my assessment.

I admit I feel very foolish for not reading through the form properly.

I naively expected them to ask me to apply the impact my autoimmunity has on all all these areas - but her questions were entirely generic. This is hopeless for a very literal person like me with complex medical issues! If I’m asked how far I can walk then I’ll reply “quite a long way with my cane, but slowly, and I’ll pay a price for it later”. But if she had asked me how long I can stand still for I’d say “30 seconds max and then I have to sit or my legs give way”. Why couldn’t she ask me sensible questions relating to my condition rather than how far I can walk? Why isn’t being able to stand in the shower or in a queue or waiting for a bus just as relevant and important? Similarly I get freezing cold or occasionally overheat because my autonomic nervous system is kaput. These extremes impact on me as much as the fatigue and are the reasons I need extra heating, a humidifier and a daily hot bath. I get really sick if I get too cold. I need humidity to prevent the dryness from the heating. These really affect our finances and my independence so they should be assessed.

My youngest son has just been diagnosed as dyslexic in his 3rd year at university - having had processing problems since he was little - which have affected him greatly. Having heard what the university’s educational psychologist explained while assessing him - I think a lot of this applies to me also. I find the kind of language used in these forms extremely hard to process so just ignored it and went for the bullet points for each category - and even then I didn’t respond in bullet points. My husband is very dyslexic in a much more classic and acknowledged way so between us we aren’t much cop at navigating DWP speak!

I am thinking of doing 2 things. One is appealing and the other is writing to my MP. I really feel that the way this process is designed is discriminatory against people with very complex long term conditions and feel passionately that the assessments should be targeted to the most prevalent condition a person suffers from and not this one size fits all approach. Maybe they need different PIP criteria for different groups - one for those with static physical disabilities, one for those with mental health problems and another for those with chronic conditions?

My sisters and their partners are all born deaf and all receive various awards of PIP. They tell me they can ignore the bulk of the form as non applicable to them but get full points for communication. It’s relatively straight forward for them to fill in and simple to answer yes or no or tell the assessor (if they even have an assessment!) how each area of communication impacts on them personally.

I just feel that those of us who can evidence medically diagnosed but relatively rare progressive diseases such as Sjögren’s and Lupus - should be asked more directed questions about how our specific diseases impact on our daily lives - a little like a more complex version of a disease activity score perhaps.

If the design was more fit for purpose then the government probably wouldn’t get such a terrible press for discriminating against the sick and disabled and we wouldn’t come away feeling quite so degraded, angry and ashamed of ourselves?

I’ve ended up feeling such a failure. Can’t get paid work because I’m too unreliable and can’t get PIP bevause I’m too reliable? Catch 22! 🙄😡

Twitchy

[Paul_Howard Partner LUPUS UK in reply to Hidden]

Hi Hidden ,

I hope that you will consider appealing because I wouldn't like to think of you having to struggle without some support that you should be entitled to. If possible, contact the Welfare Rights Advisor at your local council to see if they can help you with the appeal. We also have guides from Benefits and Work that I can email you if you'd find that helpful?

Contacting your MP to discuss your views on the process is worthwhile. There is also currently a Parliamentary review which is accepting responses from people with personal experience of the process. You can submit your experiences at parliament.uk/business/comm... (although this closes on Friday 10h Nov).

[Hidden in reply to Paul_Howard]

Oh thanks Paul - this is all extremely helpful. I will certainly use the parliamentary review link before 10th and also contact my MP- Stephen Gethins - whom I believe is likely to be quite a good advocate having originally trained in our local university as a lawyer so I read.

I am presently back up north on island home but will mull on things as have other related stuff to consider (trying to get funding for part time PhD) and meetings with my healthcare volunteering hat on. The letter said I have a month to appeal.

Meanwhile I have a phone consult with my GP today re worsening neuro symptoms and whether to start Pilocarpine. All a bit much for one small autoimmuner with plenty of white matter! I’m staying in bed today!! 🙂😎

[Hidden in reply to Paul_Howard]

Hello Paul,

This is an old post, and I'm replying in August 2018.

As I'm sure you're aware, Paul, the DWP have successfully challenged the wording about doing the activities safely, repeatedly, in a timely manner, etc. Although they're printed in the ESA50 form, they were not included in the Act of Parliament, consequently they have no legal foundation.

These days you have to apply the ESA Exceptional Circumstances regulations 29 and 35.

The DWP handbook says you can't use these regulations because they rely upon Substantial Risk and the DWP claimed this refered to likelihood. The higher tier Tribunals disagreed. They ruled it refers to possible Harm that is so Harmful it must not be ignored no matter how remote the likelihood of the Risk materializing. Applying the Exceptional Circumstances regulations is tricky, but requires a cause-and-effect risk analysis.

ESA claimants whose symptoms are associated with "hidden disabilities" (i.e. not the physical things looked at in the Work Capability Assessment) need to invoke the Exception Circumstances regulations, but can only do so AFTER failing to score sufficient points in the Work Capability Assessment, and NOT in the ESA50 claim form.

They don't make it easy,

John

[Buffy14]

Yes she may write a letter for you to help your case , my rheumatologist wrote one for me , do you have a consultant . Try your GP aswell although mine were totally unhelpful . If you go to welfare rights they will send forms to all your doctor's and ask them to fill them in , they do everything for you . It will take about 3 months to sort and you will have to sign on at the job centre while you are appealing , it's a disgrace they make you sign on and you have to lie and say you are fit for work and are actively looking for work and go every week to sign on and tell them what you have done to try to find work , if you've no other income you have no choice , if I had savings I wouldn't have signed on but I don't , the woman I had to see at the jobcentre was an absolute cow I hated it and had massive flares with the stress of it all .