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Hi, my name is Sandra666! ESA problems

Sandra666 Community member Posts: 1 Listener
I hope you are all good, and hopefully can help me out in my situation ,I'm just coming up to my 60th birthday, I have been registered disabled since the age of 29. for epilepsy, which was very serious, it is now more controlled, but i not only suffered grand malls but petty malls too, where i get a sudden Deja vu feeling and go rigid hands go up in the air and start screaming and shouting, and not realising its happening this has gone on since 29 too, i have nearly got arrested twice once in a café because there was this little old lady that happened to be in front of me it scared the living day lights out of her, over even the staff thought i was going to attack her, and called the police i came to in handcuffs, and very bewildered, my friend  explained my situation, and showed my bracelet and a register card i carried, and same thing happened a week later on a bus, the bus came to a horrible halt which caused me to fall onto the person in front of me, i blacked out came too once again with police standing over me, but my friend had already explained they sent for an ambulance, i had to stay in over night as i had hit my head, after that i started having panic attacks when trying to step outside into a place where there was people and could not even get back on a bus, so have to either get a taxi or one of my family to take me to appointments, the last ,five years i have, many other ailments, to contend with, carpal tunnel syndrome, very bad respiratory tract infection's ,which has caused me to have lung problems and breathing issues, i cant walk very far before i have to rest or i pass out breathless, one op on left eye for a cataract, and now awaiting another on the right eye, totally blinded ,and i suffer a very embarrassing uncontrollable bladder problem, it comes on without any kind of warning, and cannot hold it, i had my daughter as a carer at the time and obviously lost my severe disability payment on top of what was incapacity at that time ,then changed to ESA,,she had a breakdown herself back in November, so could not be my carer, and i totally forgot about the extra benefit until about February/march this year ,when another disabled friend of mine pointed it out, no wonder i was struggling with money, I was living on 182. pounds a week, she said that's wrong as she got nearly close on 400,so i contacted them, to enquire  why they had not reinstated, my severe disability bonus, and a lady i spoke to said she could not understand why either, but helped me fill out an online form, which she done for me and put it straight to ,the proper team, to aid me, well a few more months passed, nothing so i rang up, and complained, and i spoke to a foreign gent, who said, i should go for an assessment for work appointment ,and fill out a new form i was fuming, i was registered since 29 yrs old with them, and at the time  i turned up for an assessment and was turned away, the lady said, she did not understand why i was called in as they had enough medical evidence, and i also started to get DLA, low mobility ,medium care, and i think something else low to middle rate, never put on high, although my doctor stated i should be, but to this day, they have kept me on DLA for affinity, and my doctor is furious  about a phone assessment, I had to tolerate today, causing undue  distress, and such a bad turn, she had to be called out by my neighbour that was with me, and basically the lady assessor, read out every single ailment i have and they already had it logged, apart from the incontinence, she asked how it affected me ,and i started crying, saying do you know how embarrassing it has been this last year since it started, trying to shop, and literally wetting yourself, even sitting indoors at least two three times a day, its not nice, i have to wear  incontinence knickers  but sometimes so bad  they do not help, she did not know what to say, and said she was actually disgusted, that they already had all this evidence apart from that, and said I'm not going to ask any more, there is more than sufficient evidence, and also typed down the name of the specialist doctor i am under up at 
the  hospital, about it, and apologised but said i am only the assessor, it is not my decision, to make, i wish it was, this should never of come to this and why that other gent ,put me in to it in the first place, was totally wrong they knew i was disabled, I've waited since November last year to get my back payments they should have automatically ,reinstated when they send the letter to my daughter stating they acknowledge her stand down from carer from, November 13 2021, i still have that letter as she was living here at the time, and the lady told me , they had only got it down from march this year, that's 4 months later ,than it should be and i have got into so much debt, and have waited all this time and how much longer will i have to wait for ,a decision, please i would be grateful for any advise i cannot go through any more stress my doctor said, to much stress could lead to either a stroke or  a heart attack 


  • poppy123456
    poppy123456 Community member Posts: 57,081 Disability Gamechanger
    edited August 2022
    I found it a little difficult to follow. Is it the Severe disability premium you're asking about? If so, Can you please confirm when your daughter stopped claiming carers allowance for you, was she living with you at the time? 

    If so, does she claim a qualifying disability benefit such as PIP daily living or DLA mid/high rate care?

    If she doesn’t claim a qualifying disability benefit does she still live with you? If not when did she move out? Do you live alone now?
    Sorry for the questions but I can’t help further without more information.

    Just to add further, if it's the SDP you're talking about then i'm not sure why you were asked to attend an assessment for this because it's not a benefit as such. It's a disability premium added to certain means tested benefits.
    I would appreciate it if members wouldn't tag me please. I have all notifcations turned off and wouldn't want a member thinking i'm being rude by not replying.
    If i see a question that i know the answer to i will try my best to help.
  • Biblioklept
    Biblioklept Community member Posts: 4,957 Disability Gamechanger
    It sounds like when you asked them about SDP they called you in for another assessment and they happened to come at the same time. 

    Have you heard any more from them or had any more letters?
  • Sue_Alumni
    Sue_Alumni Scope alumni Posts: 485 Pioneering
    Good afternoon @Sandra666 and welcome to the online community and I am sorry that you're having such a difficult time with your benefits particularly as you are so unwell.  

    Poppy is right that we can't really help until we have a bit more information from you.  It was quite difficult to unpack everything you have going on.

    You were receiving Incapacity benefit and then ESA. You were receiving the severe disability premium but this stopped as your daughter claimed carers allowance in respect of the care she provided you. Your daughter had a break down meaning that she was unable to care for you.  Your SDP was not reinstated.

    You think you are due some SDP in respect of the period your daughter was not caring from you but I understand she was still living with you some of that time? 

    It seems you are also being reassessed for ESA and have completed a work capability assessment form.  You had an assessment but you were apparently turned away. What has happened since then ? I am a bit confused as to whether you then had a further telephone assessment when you got very upset -  was this about your ESA.

    I'm also confused about your DLA.  It may be that the work capability assessment triggered the DWP becoming aware of a change in your care and or mobility needs and they therefore wanted to reassess you for Personal Independence Payment (PIP).  Were you ever sent a letter asking you to claim PIP and did you attend an assessment after this. Could this be what the second assessment was for ? 


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