New PIP Claim ESA Question

Posted , 5 users are following.

This discussion has been locked due to a period of inactivity. Start a new discussion

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 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.

many regards


'I've not lost my mind, its backed up on a disk somewhere'


0 likes, 6 replies


6 Replies

  • Posted

    Hi Nicky,

    I'm sorry for the delay in replying but this has only just popped up. Sometimes posts here are held back if there's any issues and this was probably the reason no one seen it before.

    The PIP assessment has probably already been done by now and i hope it went ok. Sadly advicing on the assessment will probably be too late now.

    Your IS and Carers Allowance claim. For your husband to claim Carers Allowance he's supposed to care for you for at least 35 hours per week. The reason you're able to clam Income Support is because of the Carers Allowance.

    If his PIP claim is successful and you decide to stop Carers Allowance and claim SDP then your Income Support would stop. If you're in a full Universal Credit area then you would have to claim this and not ESA. With UC no premiums such as SDP are paid. They will be paid in the future for those moving accross and already in reciept of the premiums. This is known as payment protection. As yet that is not up and running. If your area is a full universal credit area and his PIP claim is successful then you can claim Carers Allowance for each other and stay on Income Support  but you have to look after each other for at least 35 hours per week. 

    If your area isn't a full universal credit are then yes a claim for ESA can be made but who ever claims it would need fit/sick notes from your GP while you're in the assessment phase. You would claim as a couple.

    You can check your area by searching for UC Postcode checker (google) as links can't be posted here. Hope i've explained it clearly for you. Good luck on the PIP claim and hopefully he's not waiting too long for a decision.

  • Posted

    Hi Nicky

    I'm afraid I have no expert advice as I'm new to all this. However as someone suffering with MH and a physical problem my thoughts are with you!!

    Just rember that the statistics say that most appeals for all this stuff are won so don't give up if you are not successful first time.

    Best wishes x

  • Posted

    Hi speedy I too have just had my f2f review pip assessment ....sorry for everything your going through I’m so sorry I’m not really clued up to give you any help but hopefully a lady called Denise will see your post and be able to answer your questions ...hope everything works out for you and your husband xxx
  • Posted

    Hi guys, thank you so much for your welcome and lovely replies biggrin

    So, after my awful up all night worrying on Wednesday, we get a phone call at 9.0am on Thursday saying they will have to reschedule until Monday owing to some miscommunication at their end! My anxiety levels are through the roof while he sits there watching his cartoons happy as 'Larry' (well not happy, but totally oblivious to my Due to my agoraphobia and anxiety, I am prescribed Diazepam myself just in case I have to prepare and go to an appointment. Its kept in the kitchen cupboard so I don't get addicted to it or take it by accident but I've been taking just a low dose to keep me calm. As it happens, I've got a nurses appointment at 8.0am Saturday morning (tomorrow) so I would have started taking them today anyway.

    With regard to UC, fortunately for us (and I didn't realise this until Wednesday night) its rolling out in June in our area so that gives us a little bit of leeway to hopefully get his claim sorted. He went for his mental health appointment as usual yesterday and she signed him off saying that his severe depression is being caused by the chronic pain he's in and he's in a 'catch 22' situation as I described. She can't even attempt to get to the bottom of his depression while he's in so much pain that he's physically unable to do practically anything for himself or me. She said she'll rush the report out so he has a copy of it for his F2F assessment. I don't know whether that is a good or bad thing, he did come home quite disheartened.

    I really haven't got a clue about what to do should he receive a PIP award with regard to carers allowance. Neither of us are capable of looking after each other (I have epilepsy which are 'Juvenile Myoclonic seizures like muscle spasms, best way I can describe it is if I'm holding something, it will fly out of my hand, if I'm stood, my body will go from beneath me, osteoarthritis of the knees (now have no cartilage between my knees & have been wheelchair bound since i was 38 *sigh*) & back plus a damaged sacrilliac joint from when I fell in a wrought iron bath over 12 years ago....much as I hurt myself, it really was an hilarious series of events) but if we don't claim carer's for each other, I then assume John is looking at having to claim ESA. Am I correct in thinking that if no one gets carers allowance for either of us, then SDA would get factored into any ESA claim? In all my years, I've never personally claimed incapacity benefit, ESA, child or working tax credit so making a decision on what would be best for us will be a difficult one and i'll have to get some specific welfare rights advice. I don't know how common our situation is (where those old benefits have never been claimed) and who can advise us what best to claim in our situation.

    That's still quite a fair way down the line anyway because the F2F is Monday and I would really appreciate any pointers from you in regard to that.

    Thank you once again for the warm welcome and lovely replies <3

    many regards,

    Nicky xx

    • Posted


      What does concerns me at the moment is that he's claiming Carers Allowance for looking after you but you said he's not capable of looking after you. To claim Carers Allowance for someone you must look after them for at least 35 hours per week. I have no idea if they check this but with his PIP claim if he says he can't do anything for himself and the assessor writes this down in the report, the Decision Maker/Case Manager could notice that he claims Carers Allowance for you. This will the contradict what has been said at the assessment.

      During the assessment unless you're his apppointee then he will have to answer all the questions himself. You can only prompt him. The questions they will ask will be based on the PIP descriptors. You can see these by using google. He should answer those questions with as much detail as possible and avoid answering just yes or no. They will be watching him from the minute you arrive to the minute you leave. At the end of the assessment he'll be asked to do a few activities. These will depend on whether he's claiming for mental health or physical disabilities. If it's the latter then he'll be asked to maybe raise on arm, lift his legs etc. Mental health he could be asked to spell a word backwards or a simple maths adding question.

      SDP (Severe disability premium)  as it's now known not sda, is payable if no one claims Carers Allowance for looking after you or you live alone, or classed as living alone. A couple that both recieves PIP daily living or DLA mid/high rate care will also qualify at the couple rates. This premium will not affect any Income related benefits amount. It is paid on top of the benefit.

      Good luck with the assessment.

  • Posted

    Thanks for the speedy response Denise!.

    I made the initial call to start the claim process with OH confirming his credentials etc before passing the phone back to me to continue. I also completed the claim form on his behalf and was completely transparent about this on the 'additional notes' page explaining why I had done so. I completely read everything through to him to clarify if I fully explained his conditions to his satisfaction and understanding before he signed and dated it. I also made a note below explaining how exactly the claim had been completed.

    With regard to the Carers Allowance issue you brought up, you are quite correct in the fact that it could become a serious issue for us. Looking back over time, I don't think either of us had noticed the deterioration in his caring abilities due to the fact our adult children had been 'taking up the slack' in what were considered household chores for them in the home we all shared prior to moving to this smaller, adapted property. Once we had moved and began living alone without our children, it started to become much more apparent to me especially, that his health was deteriorating both physically and mentality at quite an alarming rate.(when we first met, the children were 3,4,5 and 6, I was still mobile myself and didn't need any assistance with regard to mobility until our youngest reached 13 and I'd had the first unsuccessful surgery on my knees. We live in a holiday seaside town, all the children had weekend and school holiday jobs, they'd grown up knowing when I needed any assistance and also, we raised them all to be independent young adults doing 'chores' around the home appropriate to their age.) There were always also at least two of them (and their spouses) either living with us or next door until we moved to this property suitable for my medical needs in Aug 2016, our son being 24 and youngest daughter then being 23. When my last adult care assessment plan was put into practice just before we moved, it actually factored in that there was additional support for my health needs from not only my husband, but son and daughter too.

    Although he's suffered for many years with back pain, I am personally convinced his depression began due to 'empty nest syndrome' We'd lived all those years in a crazy, stressful and mad household with the kids and their friends continually in and out. John would be driving the children to their jobs or schools some days as many as 10 times due to the fact much of their work was split shifts and the public transport in our particular area was none existent. He literally never had 5 minutes to himself as there was always someone needing to be somewhere on the last minute! We adore our family and loved raising our children and even loved the fact our life was crazy. We would never go out socialising on our own. It was always as a family. We were even well known within our local community as the ONLY family that did everything together much like 'The Waltons' (or I would always joke and say 'more like the Beverley Hillbillies!'wink

    I know that once again I have given you far more info that you actually need to be reading but I actually think this is a situation where context matters. We'd gone from living that crazy loving family life to living as a couple for first time ever. We didn't really have much of a choice where we moved to either. we were offered this property some 15 miles from the two children who still live in the main seaside town with their spouses and children (the next big love of our lives, our Grandchildren.

    I'd managed to accept the children leaving home because the girls had all left home at some point but always returned again.

    So the move was a double edged sword. The property is lovely, totally adapted for my needs and now, as it happens, my husbands needs also. I think he's gone into the depression through missing our wonderful family life, that has caused him to lose motivation and actually, at times its as serious as he questions why he is living at all, he's gained weight putting pressure on his already painful back and he's ended up overwhelmed by everything that needs doing. 

    We;ve always also previously worked very well as a team. I would be the 'organiser' prompting him what to do and when to do it. His role was the 'doer' Hand in hand  we'd work together and things would be done. Now the problem is that between his combination of pain and lack of motivation, I will ask for something, whether it be for myself or maintenance of the house and his answer will be either 'i'll just finish my cuppa'  or 'in a minute' and then before we know it, hours have passed and the task won't have been completed, let alone started!

    I'm sorry Denise, I have to jump off, I am having one of my 'moments' and need to stop looking at the screen. I'll try explain the rest of your concerns and go into details tomorrow (quickly I hope) abouy the SDP as i understnd it


    Nicky xx



Join this discussion or start a new one?

New discussion

Report as inappropriate

Thanks for your help!

We want the forums to be a useful resource for our users but it is important to remember that the forums are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the forums is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.

newnav-down newnav-up