Employment and Support Allowance (ESA)
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ESA issues have thrown me into a relapse

MaestroMaestro Member Posts: 7 Listener
I've been diagnosed with Polymyalgia Rheumatica a year ago and just diagnosed with fybromyalgia. I have been without any income since my ESA benefits were cut in July. I'm living with my mum and this is a very big financial burden as she is 88 and on state pension. I've appealed my decision which come back as refusing to overturn the decision. This has twice thrown me into a relapse because of the stress of it. I just don't know where to turn. My chronic fatigue, dcognative impairment including ifficulties processing, pain, emotional ups and downs, inability to cope with stressful situations and balance issues make it difficult to predict and know what I can achieve in any one day. I feel like one of those donkeys or horses being whipped and forced to work when I am trying to control my health and recover. This is all putting me back. I can't see how any employer would allow me to come in late when the mornings are bad, leave my work to go and sleep, put up with my lack of processing ability. I drop things and my balance is not good. I would like to try and employ myself so that I could work when able rather than suffer at the hands a poor employer which is what triggered this in the first place.I need help to negotiate this.It;s just wiping me out having to deal with the worry and the stress and complication of it on a daily basis.


  • jane1973jane1973 Member Posts: 175 Pioneering
    [email protected] u on medication to help and how can your esa get cut if you are unfit to work? That’s not fair
    Hugz to everyone xx
  • jane1973jane1973 Member Posts: 175 Pioneering
  • MaestroMaestro Member Posts: 7 Listener
    Yes I was put on high levels of steroids and tapering among other medications. I totally agree with you but the Benefits system only seems to favour visible physical disability.not auto immune or invisible diseases.
  • jane1973jane1973 Member Posts: 175 Pioneering
    @Maestro have you applied for pip? 
    Hugz to everyone xx
  • MaestroMaestro Member Posts: 7 Listener
    I have now applied for pip but as I have now been reassessed as also having fybromyalgia and 4 relapses since applying andt it's only becoming clear how this affects me. I used to write and analyse reports. I had to hand the ESA decision letter to my sister to help me understand So it's had a really big impact. I feel as if I have a learning difficulty now. I wonder if the original app is relevant. I've no doubt they will come back and say no go. Hidden illness sucks!
  • jane1973jane1973 Member Posts: 175 Pioneering
    @Maestro it sure does, just don’t give up, keep going, I know it’s hard but we deserve to be heard as everyone else does
    Hugz to everyone xx
  • livonialivonia Member Posts: 74 Courageous
    I was sanctioned when I was in work related group I did a mandatory consideration and got moved to support group. I think I applied for some additional dwp hardship money while I was waiting my dtr took paperwork to job centre . 
  • livonialivonia Member Posts: 74 Courageous
    Can yu get any gp or specialist yu see to write to dwp? 
  • MaestroMaestro Member Posts: 7 Listener
    The GP letter does not help. It only sets out your medical condition and medication. not how it translates into daily life. I now have an occupational health person helping me set things out but that is a year down the line. No income since July. How many people do you know of that could do that. I'm living with my mother and its such a burden to her.
  • jane1973jane1973 Member Posts: 175 Pioneering
    @Maestro its so wrong to leave you with no income 
    Hugz to everyone xx
  • MaestroMaestro Member Posts: 7 Listener
    I've never claimed benefits in my life, paid all of my taxes diligently. Seen con artists and foreigners suck our benefits system dry year on year like it was a career and  a financial entitlement. I am disgusted with this country.
  • poppy123456poppy123456 Member Posts: 22,218 Disability Gamechanger

    When you say you appealed the ESA decision, do you mean MR or Tribunal? If you mean MR then most of these decisions remain the same and only about 17% of them change at this stage. Tribunal has more chance of a decision going in your favour, if you appear in person. If you haven't yet requested the Tribunal then you have 28 days after the MR decision to do this.
    Proud winner of the 2019 empowering others award. This award was given for supporting disabled people and their families for the benefit advice I have given to members here on the community.
  • Laddy11xxLaddy11xx Member Posts: 3 Listener
    how do you request a tribunal or mr
  • poppy123456poppy123456 Member Posts: 22,218 Disability Gamechanger
    MR comes before Tribunal, without going through MR first you can't request a Tribunal. To request the MR you put your request in writing stating what you disagree with, depending on which benefit you're doing this for and send it to DWP.

    For Tribunal you fill out the SSCS1 form and send your MR decision letter with it and send it to HMCTS.
    Proud winner of the 2019 empowering others award. This award was given for supporting disabled people and their families for the benefit advice I have given to members here on the community.
  • BenefitsTrainingCoBenefitsTrainingCo Member Posts: 2,692 Pioneering

    If you've already requested a mandatory reconsideration then the letter which came back from DWP should tell you about your right of appeal. It should be a mandatory reconsideration notice. If you don't have one of those, then now is the time to specifically request one.

    If you have already had an MR notice then appeal is the next step. Form SSCS1 is here. Whatever you do, make sure you understand why you should get ESA - whether it's through scoring points, or because work would be a risk to your health, or both. You can use the ESA self-test to get clearer about this. 

    Meanwhile, good luck with the PIP application. I'm assuming from what you say that you haven't applied for an out of work benefit (Jobseeker's Allowance or UC, depending on where you live). That's probably for the best for now. Once you appeal, you can go back on ESA at the assessment phase rate, so if you are at appeal stage you should lodge your appeal as soon as possible and get your ESA back whilst you are waiting for the hearing. 

    Finally, if it's more than a month since the mandatory reconsideration notice then you should explain in your appeal why you are late in lodging it. Don't worry too much about this as you can't be very late given the benefits were stopped in July, but do explain any delay (which could be caused by your condition and issues such as struggling to process information).

    The Benefits Training Co:
    Paul Bradley
    Michael Chambers
    Will Hadwen
    Sarah Hayle
    Maria Solomon
    David Stickland
  • MaestroMaestro Member Posts: 7 Listener
    Thanks for that will. I did appeal the ESA decision. Unfortunately it was rejected. This put me into a relapse and I ended up in my bed and having to cancel my days activities. To let you understand our adrenal glands which deal with the stress response have been compromised. A set back for your ordinary joe bloggs is a major physical, mental and emotional set back for someone who has Fybromyalgia. This fight to get funds costs us dearly in health.

    We really need advocacy services to fight our corner as we lack in energy, stamina and also cognativeley we have been compromised. In other words, some times we can't even think straight or form sentences. Been to CAB. It's too difficult to get appointments and sitting for a whole day in a waiting room is just not physically possible.

    I have not claimed jobseekers allowance. I have not contacted them at all. I fear that if they shoehorn me into applying for an unsuitable job as they have with many other vulerable people it could set me right back meaning my medications (which are poison to the body) will be right back where I started. It's not worth the risk. So my mum who is 88 is really feeling the financial burden of housing me. It's a disgrace.

    The honest people are the ones discriminated against. 

    I'm not sure ESA is what I need. I want to be able to work but to have flexibility to rearrange if I'm not physically capable.

  • livonialivonia Member Posts: 74 Courageous
    i Think with Esa yu can work a low amount that has to be disclosed to dwp. With pip I don’t think that is means tested I think people do claim it and work ? Someone knowledgeable wd be able to advise. I’m sorry yu are feeling so poorly and unhappy too with the benefits system.  Unfortunately I’ve found yu do have to follow their regulations to get the money. On a practical note You could probably get help with food bank vouchers which wd help your mum with a contribution for food for the two of you your local council offices wd probably issue yu one ? Or go surgery?  It was deeply upsetting when I had to use one this year for first time. but needs must . I needed support from someone to go with me. Also your mums water company might do a scheme for cheaper water payments they usually do online applications on individual needs . Just those two things cd help with your mums outgoings .

    I must say based on my own experience I haven’t met anyone who appears to be claiming benefits fraudulently. I’ve been to assessment centres and food bank people look sad stressed and pretty desperate. Most people do want to eventually get off benefits. I’ve full stamp and only been out of work since 2015 lost my full time job due to my illnesses . I definitely feel Entitled to claim in the short term as I really hope my health will improve so I can get back working or definitely volunteer. My support worker told me in thirty year career he only ever had one person who said nope no interest in working. Only my view and I’m very sorry yu feel so unwell I hope things come better for you soon. X
  • paisleyjanepaisleyjane Member Posts: 5 Listener
    Hi Maestro, 
    sorry about all your troubles, I to have fibro and polymyalgia.
    i get PIP, and ESA. If you phone CAB, they will make you an appointment if you explain your difficulties in sitting, it's what I do, they are good and it does carry weight having there help.
    Could you get you're MP involved? I am going through a tribunal and it does take its toll on your health doesn't it. Would you be able to keep a short diary? I just put basics in, 1-10 on how I felt, a pain score. Then you have evidence to back it up. 
    Hope things get sorted, all the best. X

  • debbiedo49debbiedo49 Member Posts: 2,906 Disability Gamechanger
    Hi. I understand your issues. Myself I had to sign on for jobseekers as i had no income . Basically even though I should be on esa I am now on jsa. I have to say I am fit for the minimum amount of hours agreed by my jcp advisor who knows my case. She doesn’t force me to apply for anything as I’m doing other things to help me show I’m proactive. It’s all wrong I know but there is no alternative for me. I then got pip eventually and that makes all the difference although it’s a short award. I got help from welfare rights at the council to apply for pip and suppport from mental health charity to carry on with the process as the stress was really bad and i couldn’t do it on my own. The stress as you know can cause flare ups with fibromyalgia. I’m certain people with invisible illness should have advocacy workers. 
    I am a fibro warrior !💜♏️
  • MaestroMaestro Member Posts: 7 Listener
    Thanks for that. All the comments help. 
  • Billylynn4668Billylynn4668 Member Posts: 8 Listener
    Don’t know we’re this country’s has gone wrong but the people who are really sick seem to get to more hassle then someone that just comes into the country from we’re ever get all the help they need but if you are sick you are made to feel like criminals asking the state for money the DWPcan say your fit for work then you need to go through all sort of hoops to explain yourself ask for appeal which they can denied or allow people with no money they can give you scantions if you don’t follow their rules I thought this was a liberal country not we’re the state rules we better watch out think the workhouses will come back run by the DWP we’re we are all going end up sick people children what a state of affairs 2018
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