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ESA, PIP and caring
keylimepie
Member Posts: 10 Listener
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
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
Here is some information for Carers UK.
If you need anymore information then please do let us know
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
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
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
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?
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
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'
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
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.
Scope community team
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