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Hi there, I'm new to the forum and have a couple queries please. I'm sorry that its going to be long as I have to give perspective.
I have been on DLA for 27 years & my dreaded PIP letter hasn't arrived yet so this initial part isn't about me, its about my husband.
He's been my carer for 20 of those years so we have received Income Support and carers allowance. We've always known he was a bit 'different' to the 'norm' and about 15 years ago our GP suggested it may be down to Aspergers Syndrome and at the time, we decided not to pursue it because we didn't want him on medication or changing his personality as we simply loved him for the person he is.
Fast forward to 18 months ago, our final child left home, we moved to an adapted bungalow for me and my issues, where we have lived alone for the first time in our relationship (both married previously, both bringing 2 children each to the marriage)
Over the past 18 months he's gone into a severe depression, completely changing his personality and its affecting every part of our lives. He's also always suffered with a bad back after falling out of a tree when he was 14. This depression has left him with no motivation to do anything, its exasperated his Aspergers symptoms and his lack of motivation to do anything has caused him to gain weight, putting more pressure on his already painful back so that he's now in a 'catch 22' position of not wanting to do anything, but not being able to do anything because of his pain. He initially was put in a group therapy at our local Mental Health services, something completely wrong for a person like him who certainly does not flourish in a group scenario. He completed that 'therapy' in exactly the same position as he started and had it not been for the fact that he finally spoke up when they called to 'sign him off' and told them that his mood (suicidal at times but too scared to die) was still just as bad, did they start him with a counsellor just before Christmas. I also suspected that he was just taking his painkillers from his GP and wasn't ever really telling the Doctor how bad his back actually is and how much he is suffering. I wrote to his GP with my concerns and the GP called him to go for an appt etc with a view to sending for xrays and finally get some tests done. This appointment isn't until 5th Feb now due to a miscommunication between the Dr's surgery and me and his original appointment that we thought was Tuesday, was actually on Monday!
We are also waiting for Social Services to re assess my adult care plan and do one for him too because we no longer have the additional support we had before we moved (daughter living next door and son and his wife living with us. Looking back, I think we relied a lot more on our adult children far more than we realised, his health had been deteriorating for a long time, and I'd simply not noticed because our children took up much of the slack)
I put in a claim for PIP for him thinking it would take ages to sort and the only 'evidence' I was able to send was his prescription list (he's on anti d's, painkillers galore, high cholesteral meds and some others) and a letter from The mental Health counsellor detailing the situation with his depression. I figured that, by the time PIP got round to his claim, we'd have his discussion with his GP about his back done, some xrays etc and it actually on record how much chronic pain he really is in.
How wrong was I? PIP sent a text (no letter as yet) to say his claim was received on 11th Jan and on Tues this week, Capita rang to say 'they thought it was best to see him quickly', and by the time you are most likely reading this, he will have had his F2F at home, on Thursday 18th January. I'm literally freaked out!
I had to complete his PIP form for him as he's totally unable to do it for himself (btw, being extremely conservative on the self assessment test he gained 17 points daily living and 12 mobility) and it took me all my time to get him to listen to what I'd written for him to get the response of 'yeah that sounds ok'
So this is my first issue, its all gone in with little medical official backup (no back diagnosis, no official Aspergers diagnosis) and to make things worse, he's said that under no circumstances does he want me in there with him! I really don't need to ask you guys how much we are doomed here.......lol I'm going in there with him whether he likes it or not!
I'm so sorry this is so long, its 5.05am, I suffer from social anxiety disorder, panic attacks agoraphobia and they aren't even my main problems. We've been having our daughter come once a week to help (involves her getting 2 buses here and back again, she got 2 kids aged 5 and 4 and the 4 year old has autism) PIP would help so much in being able to pay her for the help she gives us. Her husband was rushed into hospital last week with a collapsed lung so she's not been able to come this week and the house looks like a bombs hit it!
OK next is a benefits question (if you have actually managed to read this far) Because he's always received Carers allowance for me, I've never had to claim ESA as we've been on income support. Should he eventually get PIP and stops claiming Carers allowance (he hasn't been able to care for me for a long time) will we both then have to claim ESA? or would Income Support then just pay us both the severe disablement premium? There is no one able to claim carers allowance for either of us, so I don't know what would happen next. I don't even know whether we'd have to claim Universal credit??? Obviously, I imagine this will be sometime down the line because we will have totally blown the PIP claim this time. (should I be more or less concerned its all happening so fast?)
If you've read this far, thank you. I had to write all this out of a combination of overwhelming fear and dread (as I use to have in the days when I had to renew my own DLA every 3 years (before I had a lifetime award, soon to be ended when that PIP envelope drops through our door) frustration and worry.
Basically, its taken me all that post just to ask if you can confirm the process when he gets denied PIP, when we get our ducks in a row and can put in a decent, successful claim, what to do about Income support, carers allowance, (the severe disablement premium and where that gets paid as no one will be claiming carers allowance) and eventually, Universal credit should he ever get PIP himself.
Thank you so much for reading, any help or just calming thoughts (or even prayers to St Jude at this point) would be so much appreciated.
'I've not lost my mind, its backed up on a disk somewhere'
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