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Do they realise what this does to people?

I've (luckily) been left alone since 2014 but this morning received an ESA50 form for reassessment. It's taken nearly a week to get to me and in the 3 and a bit weeks remaining for me to get it back to them I have a family reunion weekend, my eldest son's wedding and a two week holiday booked - we get back 2 days after the return date.

My immediate response was unprintable and since then I've just felt sick all day and can still barely type for shaking. The first assessment was a complete nightmare, took 6 weeks short of 2 years to complete, involved 12 cancelled appointments and landed me in hospital twice. I simply cannot go through that again and don't want to even fill in their stupid form. I'm probably only being reassessed at all because the stupid doctor who assessed me expected me to make a miraculous recovery from an incurable and irreversible conditon and a genetic condition which will only deteriorate. 

I know myself well enough to know this is going to keep me awake at night and lead to obsessive investigation of every possible outcome until it's over. If I could get hold of anyone even remotely involved in this inhumane system right now ....


  • janice_in_wonderlandjanice_in_wonderland Posts: 252Member Chatterbox
    @axwy62 Very sorry to hear how this is affecting you and many others inc myself 

    I don’t know what to say but I sincerely hope you feel better soon

    Yes I agree it’s quite an ordeal for anyone to go through 
  • debsidoodebsidoo Posts: 223Member Chatterbox
    Hi @axwy62
    If you don’t think you can get your response back to them in time you could try and ask for an extension.I have a friend who got a two week extension as she was waiting for results to get back from hospital.
    You could telephone them and ask if they would allow you extra time explaining you are unable to complete on time they may allow you a grace period.Good luck.
  • poppy123456poppy123456 Posts: 4,868Member, Community champion Brian Blessed
    There's no extensions for returning the ESA50 form and it has to be returned by the date stated in the letter otherwise your benefits will stop. The only exception to this rule is if you're claiming ESA for mental health, otherwise it has to be returned. The ESA50 form is sent directly from the health assessment providers and not DWP. 
  • Lynette1066Lynette1066 Posts: 38Member Whisperer
    I had my first, ESA medical 6 weeks ago, since claim made 5 years ago. I went through total hell. But personally it has been worse since the medical. Waiting for that phone call. I am in WRAG group, 12 month review. Then I expect to be found fit for work. So have to get on with it.
    I can give you this advice. When you have been for the medical. Go online to DWP, and request under freedom of information act. All your information from a specific date, and including the medical assessment report. I am pleased I did get mine. As this enables me, to point out a few things in the jobcentre tomorrow.
    It will not be a good day, but have to get on with it. I know this government does not understand what these do to a persons mental health. For myself it is DWP sanctions as well, and not being able to get through the interview at the jobcentre.
  • axwy62axwy62 Posts: 94Member Talkative
    I have no problem at all with the assessment, it's a necessary evil and I have very little doubt about the outcome - being in a powered wheelchair alone should put me in the support group, but I also meet at least one other support group criteria.

    What is bothering me is that both of the assessments I've had before have been an absolute nightmare to arrange - 12 cancelled appointments in just under 2 years for the first, a home visit because none of their centres around here are wheelchair accessible, and after all that they took 10 minutes to decide I should be in the support group and left. The assessment was recorded, I have a copy of the report and the recording, and even in 10 minutes there are muliple discrepancies between what was said and what was recorded - none of them in my favour despite the outcome.

    The second one only involved 2 cancelled appointments - the first over 2 hours away in a non-accessible building with no parking, the second a home visit for which they just didn't turn up. I was so stressed by the no show, having had several sleepless nights worrying about it and having been hanging around doing nothing for the 4 hour time slot they gave me, that I ended up in hospital the next day with a serious flare up. I also have a copy of that report and again, it's total trash, according to that I can walk between 10 and 50 metres whereas in fact I can walk a few steps at best, and there's no mention of a wheelchair at all - perhaps the nurse didn't notice it. Again, the 'errors' didn't affect the outcome, but I do object to people writing lies about me.

    I am luckier than most in that I'm not going to starve if they stop my benefit (at least not until Hubby has to retire next year) so I can imagine how much worse it must be for people who rely on that money as their only income, I think it really would finish me off.
  • SHEBASHEBA Posts: 13Member Whisperer
    I have been for 3 assessments ,the first,I was told ,that I would not be bothered again ,and they apologised for bothering me.Then the second ,I got through.The third ,I was refused,went through the Mandatory appeal,got that denied,despite being worse,having recently lost my mum,my pet dog ,being hassled by housing ,and my family disowning me!I went to a wonderful organisation,Disability Solutions,who helped me through the next stage ,a tribunal,and were priceless,supporting me at the event ,and with advice,support,and attended the tribunal with me.This was after 15 months without ESA,despite my circumstances getting worse,and losing any support from any services,I would like to thank them from the bottom of my heart,for their help,no one else came forward,I don't now how I got through it,but I have ,and am stoical in getting myself up to a better level,/mood.
  • Government_needs_reformGovernment_needs_reform Posts: 508Member Chatterbox
    I feel for each and everyone of us having to keep proving ones self everytime.

    Ive also had my fair share of this crap from the DWP and am in the process of waiting my ESA reassessment, paperwork all sent back in June and awaiting either Paper Based or assessment at a centre. The mind boggles I've decided I will neve go to any assessment ever agian thus they will stop my money, I've now got to the point also I just can't and will not dance or have my life controlled by them the DWP any longer. Enough is enough.

    They Know full well the DWP that I am buggered. So I have made my decision if it all goes wrong I will live on the street at least I will be free of them. 

    Yes for me it's been hard for me to take this direction to go homeless I really cannot do this anymore, I have a safe place to camp and hopefully live off the land and get some food, but I will finally be rid of the DWP to me it will be priceless.

    I have over the last few months been preparing my supplies to keep me going for a few years to live DWP free.

    How dare some A hole that can judge how I don't cope within a 10 minute interview and dictate my destiny, where my medical record speaks for itself, personally I'm just awaiting my fate one way or another.

    I just like many of us just can't cope with this year in year out any further.

    When I know my fate I will be posting the result of my future whether I will have a home or be homeless.

    God bless one and all....

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  • SHEBASHEBA Posts: 13Member Whisperer
    I hear you its fundamentally wrong ,for ANYONE to decide your worth,or how much MISERY,you have to endure ,based on numbers ,not a human beings life ,already majorly limited by societies small minded ,media conditioned bigotry.In one hour ,your entire existence is decided ,what right ,does anyone,let alone government lackies have to do this to anyone.?I sincerely hope you get the just result ,that you should get.The fact that with degenerative illnesses,you STILL,have to be questioned ,is senseless,£200 million spent on this by the Tories,to remove the rights of those most vulnerable,while they do nothing ,to billionaires who dodge £120+ billion per yr  in unpaid taxes,and the royals ,DOUBLE their "benefits"...millions.Obscene ,that's what it is.
  • debsidoodebsidoo Posts: 223Member Chatterbox
    Hi again as poppy said.
    There's no extensions for returning the ESA50 form and it has to be returned by the date stated in the letter otherwise your benefits will stop. The only exception to this rule is if you're claiming ESA for mental health, otherwise it has to be returned. The ESA50 form is sent directly from the health assessment providers and not DWP.  
    My apologies for this.I thought the rules were the same as for pip.Sorry Poppy.
  • axwy62axwy62 Posts: 94Member Talkative
    I basically have 4 free days left to complete this form, it's so far taken me two days just to update the various lists of conditions, medications and consultants etc.
    I wasn't planning to take my laptop on holiday with me, but I will have to if I'm still filling in the form, and it's all such a waste of time anyway because the default positon for Maximus, ATOS, Capita and DWP seems to be that everyone is exagerating at best. I could probably write it in Hobbit and they wouldn't notice because I'm sure no one actually reads what's written, at least not until 5 minutes before the assessment. I wish I had the nerve to try it!
  • axwy62axwy62 Posts: 94Member Talkative
    Does anyone know if there is DWP guidance on when home visits should be offered?
    I know Maximus are the worst for refusing to do home visits without making you jump through more hoops, including paying for yet another GP letter, after which they say that if you can go to your GP to get a letter, you can go to an assessment centre.
  • axwy62axwy62 Posts: 94Member Talkative
    In limbo. Managed to finish completing the form before we left home and got a minion to post it (with proof, I don't trust any of these companies not to lose it) so now the wait begins.
    I'm hoping for a decision letter from DWP but expecting an appointment to attend yet another inaccessible assessment centre, probably 40 miles away and with no parking.
  • poppy123456poppy123456 Posts: 4,868Member, Community champion Brian Blessed
    First appointments are computer generated so it usually gives out the first available appointment. You can of course cancel 1 appointment if it's not convenient, if you are called for another assessment. Good luck.
  • axwy62axwy62 Posts: 94Member Talkative
    First appointments are computer generated so it usually gives out the first available appointment. You can of course cancel 1 appointment if it's not convenient, if you are called for another assessment. Good luck.
    Which begs the question why bother to ask what special arrangements might be needed on the form? Like most people, I assumed that if I'm asked if, for example, I need a wheelchair accessible assessment centre then this will be taken into account before an appointment is booked. Even the Independent Case Examiner (wrongly) believes that information provided on PIP and ESA forms regarding the assessment is taken into account prior to an appointment being offered, so if anyone can provide proof that this isn't the case I'd love to see it and pass it on to them as this was the only reason they didn't fully uphold my complaint about the fiasco that was my last assessment.

    Also, you can cancel as many appointments as you need to so long as you have good reason - whilst Maximus will make a fuss, DWP know better than to try to enforce something which has no legal validity whatsoever particularly when ATOS/Maximus cancel appointments willy nilly with no regard to how long you've been kept waiting to be seen.
  • axwy62axwy62 Posts: 94Member Talkative
    Still waiting.
    The optimistic me thinks the paperwork will be returned to DWP with a recommendation that I continue in the Support group and no further assessment will be required.
    The pessimistic me thinks that it will once again take 2 years and multiple cancelled appointments before someone finally actually turns up to assess me but doesn't notice the wheelchair or the pages of medical evidence or decides I'm making it all up and that we've paid for all these aids because I'm lazy and so decides I'm fit for work, after which I'll have months and months of waiting for the outcome of mandatory reconsiderations and tribunals before eventually getting the right decision.
    I can't quite bring myself to contact them and ask how long it might be before I hear something.
  • poppy123456poppy123456 Posts: 4,868Member, Community champion Brian Blessed
    The Support Group descriptors are here and you need to satisfy at least one of them to remain in the group. https://www.benefitsandwork.co.uk/employment-and-support-allowance/esa-glossary/1353-support-group-descriptors
    There's also reg 35 which is explained here.

    ESA is about the work you can do rather than the work you can't do and this is what they assess you on.

    I can't imagine ringing the health assessment providers will help you much because backlogs are in all areas so there's no timescales.

    Hopefully it won't be too long before you hear something. Good luck.

  • axwy62axwy62 Posts: 94Member Talkative
    So as expected, no one even looked at any of the information on my form before sticking me in the assessment queue to go to an assessment centre. When I queried it I got the stock 'you need a letter from your GP ....', which was of course included with the form. I am now told I might have to wait 6-9 months for a home assessment.
    I am not putting up with this again, it's an entirely pointless exercise anyway and why should I be penalised for being too disabled to be admitted to their assessment centres? As well as the cost of the letter from my GP, the stress from having a sword that could cut off my income hanging over my neck for months on end is intolerable. The last ESA assessment took near enough 2 years to complete and put my mental health recovery back 5 years, the PIP assessment put me in hospital.
    I'm already collecting the evidence I need for an Equality Act claim, and I will be reporting any identifiable HCPs to the relevant governing bodies. Enough.
  • axwy62axwy62 Posts: 94Member Talkative
    To justify asking me to go to an assessment centre, Maximus have picked out just one comment from the masses of medical evidence I sent in. The comment was preceded by confirmation that I've been wheelchair bound since 2012 and that following further surgery in early 2016 there is nothing more the specialist can do for me, but that I should 'be as active as possible despite the wheelchair'. 
    Maximus wrote 'your specialist has recommended that you be more mobile'. As justification for making me go to an assessment centre which won't let wheelchair users in, I find that somewhat lacking. I am also trying not to be seriously offended - is it me, or are they actually suggesting that if I tried harder I could manage without the wheelchair? I can't work out what else they could possibly mean.
  • Sam_ScopeSam_Scope Posts: 6,638Administrator Scope community team
    Oh I am sorry to hear this @axwy62 :( It is so tough and I understand how unfair it all feels.

    When you say " an assessment centre which won't let wheelchair users in" do you mean that it is now wheelchair accessible?
    Senior online community officer
  • axwy62axwy62 Posts: 94Member Talkative
    All the assessment centres in my area are above the ground floor. DWP rules are that if you can't get down the stairs unaided, you cannnot go above the ground floor in their buildings, therefore accessible or not, lift or not, they simply won't let me in.
  • Sam_ScopeSam_Scope Posts: 6,638Administrator Scope community team
    That's ridiculous!

    Senior online community officer
  • poppy123456poppy123456 Posts: 4,868Member, Community champion Brian Blessed
    Don't forget the RA equity act 2010 have you mentioned this to them?

    Also bare in mind that for ESA for the Support Group descriptor for mobilising they look at your ability to be able to use a self propel wheelchair, if you can use one of these then this is what they'll expect you to do. :/

    For me ESA is always the worst assessment of all.
  • axwy62axwy62 Posts: 94Member Talkative
    You couldn't make it up. From the first assessment, when I wasn't quite so clued up.
    They send me an appointment. I turn up. They won't let me in because I'm in a wheelchair. I go home. I get another appointment for a home visit, which is on the same date as planned surgery and which they knew about. I phone to amend said appointment. I'm told I can't do that because I've already 'failed to attend' the appointment at the assessment centre so if I 'fail to attend' this one, they'll send my file back to DWP. They send my file back to DWP as at the time of the appointment I'm unconscious and so, remarkably, don't answer the door.
    DWP have more sense that to try to maintain the 'failed to attend' once provided with the recording of the call plus proof that ATOS knew I would be in hospital before arranging the appointment. I (eventually) get a new appointment for a home visit. About an hour before the HCP is due the post arrives including a letter allegedly from the HCP which basically says 'I called and no one was home'. ATOS try the 'failed to attend' route again. DWP back down when I provide the timed and dated recording of my call which amounts to 'wtf is going on, she's not supposed to be here for another hour and how could she have known yesterday whether or not I'd be in today?'
    I get another appointment. ATOS cancel that one with 2 hours notice. I get another appointment. Half way through the 4 hour time slot I'm expected to hang around for I get a phone call saying the HCP has called in to say there's no one home again. She apparently alleges that she was knocking on the door for half an hour. I ask for a description of the door. After some discussion and a live video of our front door, she accepts that the HCP was clearly at the wrong address but she's left the area by then and won't be back. 
    I get another appointment ATOS cancel with hours/days/minutes (delete as appropriate and repeat until the total gets to number 12).
    I get another appointment. ATOS know this is their last chance so 3 of them turn up - the HCP (an alleged GP, but her 'English' is barely intelligible), the area manager and a minion to operate the recording machine. Once the formalities are done the HCP asks me 3 questions which I answer with information which was on the original form and confirmed by medical evidence (which she admits she hasn't read) and they leave as it's obvious I'm in the support group. Despite the recording, when we receive a copy of the report what is written down bears very little resemblence to what was actually said including the fact that I will allegedly fully recover within 2 years. From once condition which cannot improve and has been stable for 30 years and another degenerative genetic condition. 
    Having read that, you can see why I might not be willing to risk putting up with it again.
  • axwy62axwy62 Posts: 94Member Talkative
    I have mentioned the Equality Act and I use a powered wheelchair, I can't self propel as I have no grip and no upper body strength. I have Ehlers-Danlos which affects most of my joints.
    I meet at least 2 other support group descriptors as well as mobilsing.
  • poppy123456poppy123456 Posts: 4,868Member, Community champion Brian Blessed
    Absolutely ridiculous! :(
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