Employment and Support Allowance (ESA)
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ESA, PIP and caring

Hi everyone, I'm new. I'm not disabled but I care for my partner who is. I do literally everything for him.

He currently gets ESA and PIP (high rate). The ESA team recently called him and told him he didn't complete one of the forms correctly when he first received DLA and because of this they owed him money. They actually paid him nearly £10000 in backdated monies dating from 2012 I think it was. He changed to PIP from DLA in 2017 if I remember correctly

Well anyway, his condition has deteriorated. He is now constantly in pain and can hardly walk anywhere without 'aids', I'm trying to get him to use a wheelchair but he's too damn proud, he'd rather struggle with a stick and use the walls for stability to go anywhere. He's got this really strange condition usually only found in the elderly as well, but he's only 40. I can't say what it is because if he ever sees it he'll know it's me as this condition is so rare and he's fiercely private about everything. I cannot talk to anyone else about it 

We do have a Motability car. This year, we had the PIP assessment and to be honest, I was surprised as it went straight through, no silly letters saying 'we're considering your claim' and then a rejection like last time, just straight through 

Well today, he got a letter. Not a month after receiving that money from the ESA team and not 2 months after his PIP assessment he has been asked to complete an ESA questionnaire and to be honest I'm petrified about it because last time, we asked for a home visit and the health 'professional' did nothing but lie. If you'd have seen the letter we got sent it made out like my partner was up and down practically dancing a reel. it was one of the most stressful times of my life 

I know in our home we can record but neither of us thought of it at the time, we will this time if it comes to it

I hope and pray that when the questionnaire is filled it and returned with his evidence they just say 'all OK' but there's so many stories where people who genuinely are sick are just treated like scum who are trying to steal the country's resources by the ESA team

I guess I wanted to share, you all seem like a really supportive community

Thanks for reading 

Replies

  • poppy123456poppy123456 Member Posts: 22,218 Disability Gamechanger
    HI,

    Please be aware that if you're planning on recording the assessment then you will need to ring the health assessment providers at least 48 hours before the assessment and tell them you're recording it.

    You must also use the appropriate recording equipment, which must be 2 CD/tape recorders because you have to record 2 identical copies and hand one copy in at the end of the assessment.

    When filling out the ESA50 form, make sure you put as much information as possible and send evidence to support his claim.

    Good luck!
    Community champion and 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.
  • Chloe_ScopeChloe_Scope Scope Posts: 10,662 Disability Gamechanger
    Hi @keylimepie and a very warm welcome to the community. Thank you for taking the time to share this with us. I imagine it has been quite difficult and stressful to go through all of the assessments. Do you have any support as a carers?

    Here is some information for Carers UK.

    If you need anymore information then please do let us know :)
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    Scope

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  • keylimepiekeylimepie Member Posts: 10 Listener
    Hi Poppy,

    yes we did this at his PIP assessment. We had tape recorders and gave them a copy of the tape at the end

    The interesting thing is that the PIP people told us that if we have a home visit, we don't need to ask permission to record as it is our premises - have you heard this before? With his next ESA assessment (if he needs one after he completes this form) we will be looking for another home visit and will be recording it to stop the lies being said

    The PIP centre was completely flat before, no steps from the car to the room and ample parking outside, but the ESA assessment centre is apparently in the middle of Ilford so a long trek from the car park to the building and then you have to stand and wait to be let in and he just won't be able to make it. This is why we insisted on a home visit last time


  • keylimepiekeylimepie Member Posts: 10 Listener
    Hi Chloe 

    Thank you, to be honest I don't. He doesn't really like me talking to anyone else about him and his problems and always is really moody when he finds out I have done it. He's so private

    I have to work also so I literally get up, do his bits in the morning, go to work, come home and do his evening bits and then go to sleep

    I just needed somewhere to talk I think. I'm definitely going to give that link a look, thank you 
  • Chloe_ScopeChloe_Scope Scope Posts: 10,662 Disability Gamechanger
    Hi @keylimepie,

    I can imagine that is difficult to balance with work.

    We are always here if you need to talk and I hope we will be able to provide you with support and guidance.

    As a carer, you are also entitled to a Carers Assessment which could help with accessing support. I do however understand that this may be difficult if your husband wants to keep his needs very private. Please do give it some thought though :)
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  • poppy123456poppy123456 Member Posts: 22,218 Disability Gamechanger
    That advice about recording a home assessment without ringing at least 48 hours before, is not correct. It doesn't matter where the assessment is, you still need to do the correct procedure.
    Community champion and 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.
  • April2018momApril2018mom Member - under moderation Posts: 2,882 Member - under moderation
    Hello!
    I understand your husband’s nature. I’m the same way especially with strangers I meet for the first time. But are you getting support? Do you have a social worker or not? Perhaps you could gently ask your husband to share as much as he feels like sharing. What about adaptive equipment? 
  • keylimepiekeylimepie Member Posts: 10 Listener
    Hi!

    No not really. I cope by speaking to my mum and friends on the side. They're sworn to secrecy though. He does tell people what he wants them to know but everything else is off limits. And it's not a lot he wants people to know

    He always uses a stick to walk and the wall. He's only 38 so refuses point blank to use a mobility scooter or other because he feels people might either make fun of him or judge him because he's so young

    To be fair though, we've had that before and it was really not nice. We pulled over in the car to sort out something quickly and some woman started shouting because we'd pulled up down a side street but on double yellows and didn't believe his blue badge was genuine. Started shouting about how he was just a lazy scrounger who was clearly making it all up to get out of going to work :-( so that's added to it. He hardly goes out at all now and when he does he's with someone all the time

    No social worker, he doesn't trust them either. Just me and his/my family 
  • Chloe_ScopeChloe_Scope Scope Posts: 10,662 Disability Gamechanger
    Hi @keylimepie, how are you doing today :)
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  • keylimepiekeylimepie Member Posts: 10 Listener
    Hey! Not too bad today, thank you. Yourself? The form has now gone back for the ESA so now we just wait. I'm going to be positive about it and not think of it for a while 🙂
  • keylimepiekeylimepie Member Posts: 10 Listener
    Ugh. So he got his letter requesting an assessment. The centre is about 5 minutes away from our home, but they kindly told him that it's on the second floor and if there's a fire he'll have to get down 40-odd steps. He phoned them and they said, you'll need someone medically associated to you to explain that to us so we've had to request yet another doctor's letter at £30. Got to collect it on Tuesday morning and get it sent to them by 12th. The stupid woman who answered the phone said the DWP had specifically asked for him to go to that centre, and on this occasion no alternative arrangements would be made. He said but I can't use stairs, and explained and she parroted again that the DWP had specifically asked for him to go to that centre, and on this occasion no alternative arrangements would be made. It was like speaking to a robot. So we've got this letter coming anyway on Tuesday, she put a hold on anything happening until 12th and so we'll see what happens...
  • poppy123456poppy123456 Member Posts: 22,218 Disability Gamechanger
    I don't understand why you were told that DWP told them they had to use that centre. DWP have nothing to do with face to face assessments, it's the health assessment advisory that are responsible for that.

    Are there no appointments available on the ground floor? If not then you're well within your rights to request an appointment at a different centre but do be aware that this could be considerably further away. Also remember that you can only cancel 1 appointment and then you must attend the next one.

    Is the letter from the GP requesting a home assessment?
    Community champion and 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.
  • keylimepiekeylimepie Member Posts: 10 Listener
    Neither do I. When he had his last but one assessment, god when was it now? Probably 2012? He just called them and told them his situation and they arranged for us to get a taxi to Colchester area, which is not a problem but he was a bit fidgety and then stiff when we got there. It took ages to get out of the car. The one after that he called them and told them again and they arranged a home visit with none of this palaver
    The woman on the phone was a total waste of time. She probably just made it up to be honest get us off the phone, as she also tried to tell him he had never had a home visit before even though he has
    No this centre is on the first or second floor of a job centre building so no ground floor rooms. I was shocked to be honest that they put the onus on sick people to evacuate the building themselves in the event of a fire
    The GPs letter is to request a home visit yes. Just because he did say to the stupid woman that we don't mind going if there is a ground floor and what alternatives were there. The answer was 'the DWP had specifically asked for him to go to that centre, and on this occasion no alternative arrangements would be made'. So we said well ok we'll get a letter then and request a home visit on medical grounds

    This woman put the assessment date on hold-this doesn't count as us cancelling does it, we never asked her to do this she just did it when we said about the letter. 'I've delayed the date until 12th so nothing further will be sent out, this gives you three weeks to deal with your doctor'

     :( 
  • poppy123456poppy123456 Member Posts: 22,218 Disability Gamechanger
    edited August 2019
    When was the assessment date? If delaying until the 12th takes you past the date of the assessment then yes, that's the same as canceling one appointment. Do be aware that if he attends other appointments then this could go against him for the home assessment.
    Community champion and 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.
  • keylimepiekeylimepie Member Posts: 10 Listener
    It was for next Thursday... 29th August. He attended a PIP assessment but it was all ground floor, with parking outside and no stairs at all. If it was a similar centre it would not be a problem but they said it was specifically requested he go to this one, with stairs
  • poppy123456poppy123456 Member Posts: 22,218 Disability Gamechanger
    Unfortunately, because PIP and ESA assessments are carried out by different companies they are not done in the same buildings. Is there a lift in the building at all? I understand of course that a lift can't be used if there's a fire but having a physical disability myself and unable to walk very far, i also use an aid and a mobility scooter when i'm out so i know how you're feeling.

    However, if i thought like this each time i wanted to go somewhere then i wouldn't go anywhere but i don't think of the bad things that could happen. Anything can happen to anyone at anytime even those that aren't disabled because we can't predict the future. Please don't think i mean anything by this because i really don't, like i said i have a physical disability myself.

    As he's attended a PIP assessment in the past, if that was recently then they may refuse the home assessment. Especially if he attends other appointments.

    If it was me and there was a lift so i could get upstairs then i'd rather attend, even more so because it's so close to home. If a home assessment is refused the next assessment offered could be much further away.

    I don't honestly believe that DWP specifically requested that assessment centre because they have nothing do with the face to face assessments at all. In fact they have nothing to do with reviews until the report has been returned back to them.
    Community champion and 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.
  • keylimepiekeylimepie Member Posts: 10 Listener
    Hey Poppy

    There is a lift which is fine but because they have said in the event of a fire he would have to make his way down 40 steps and they wouldn't help him. He just can't go down the steps. If the centre was ground floor this really wouldn't be a problem

    He does use a walking stick but refuses to use a mobility scooter since he's only 38 and he gets comments now, he does worry too much about what other people think. I keep saying 'maybe you should get a mobility scooter' and he just shouts 'F OFF I'M NOT USING AN EFFIN' MOBILITY SCOOTER, I'M NOT OLD'. And so I drop it because I can't force him

    I do have to check everything before we go anywhere (disabled parking, flat, stairs). Or he doesn't go

    Distance is not an issue. If they offer us a ground floor miles away it wouldn't be an issue

    No, you're probably right. The woman probably just wanted us off the phone so was talking rubbish. It was Friday night after all! I'm glad it was recorded because he will bring it up to find out the truth when this letter gets sent to them
  • Chloe_ScopeChloe_Scope Scope Posts: 10,662 Disability Gamechanger
    Hi @keylimepie, sorry I missed your earlier message.

    I really hope you can get this sorted and I understand how annoying this must be! Please do let us know if there is anything else we can help with and hope you get the doctors letter soon.
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  • keylimepiekeylimepie Member Posts: 10 Listener
    Finally got the result of the assessment today, we went to a ground floor in the end and it was all ok, he's been placed back in the support group. So worries gone until the next time! So relieved, he's well happy too
  • Chloe_ScopeChloe_Scope Scope Posts: 10,662 Disability Gamechanger
    That's great news @keylimepie!! Thank you for letting us know, very happy for you both! :)
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  • Adrian_ScopeAdrian_Scope Testing Team, Community Team Posts: 7,934 Scope community team
    It must be such a relief for you both @keylimepie. Brilliant news!
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