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Agoraphobia and anxiety

rsxrsx Member Posts: 55 Connected
I applied for pip on the 10th March 2020 and had my phone assessment yesterday (22nd July 2020). I haven't left the house since 2015, and can't leave the house due to my anxiety and panic attacks. I have been reading up and have seen lots of negative experiences with mental health and pip and now I now I just feel so anxious about the whole thing. I feel like because I haven't been to the doctors since 2015 and don't take medication, as it made me really Ill when I took medication in 2015 and the doctors weren't helpful and now doctors and any medication is a massive trigger for my anixety but feel like I didn't get this across in the assessment, but I now feel like this will go against me. Just wanting to hear other people's experiences to try and put my mind at rest 

Replies

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

    One of the worst things you can when applying for a benefit like this is read other peoples stories on the internet because it's gauranteed you will mostly only find the bad stories. If someone's had a decision they're happy with, they have no questions to ask so we don't hear their story.

    Lots of people successfuly claim PIP without any problems at all. What you must remember though is that it's not awarded based on a diagnosis, it's how those conditions affect your ability to carry out daily activity based on the PIP descriptors.

    All i can advise is wait a week and then ring DWP to request a copy of the assessment report to be sent to you, providing you live in the UK. When you receive this, look at the descriptors online and compare the recommendations in the report against them. From there you will be able to see what recommendations were made. Usually they go with the report.

    If you're not successful then request the MR and then Tribunal.
    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.
  • rsxrsx Member Posts: 55 Connected
    I know, the man on the phone was really nice and did seem to ask me the right questions if that makes sense, i just feel like i didnt get eveeything across as best i could. 

    That's true, it's a lot easier to find bad reviews than good ones. I'll give them a ring in a week and see if I can get a copy of the assessment report.

    Thankyou 
  • poppy123456poppy123456 Member Posts: 22,218 Disability Gamechanger
    The assessment isn't really the time to get your point accross. That's exactly what the form is for, for you to give as much information about your condition as possible.

    The assessment is just to confirm what you wrote in the report and any additional information they ask. If everyone was given the time to get their point accross during the assessment then backlogs would be longer than they already are.

    Try not to think the worst because this isn't going to help. I realise how difficult that is, having been through this process multpile times myself but it doesn't help.

    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.
  • janer1967janer1967 Member Posts: 9,108 Disability Gamechanger
    Hi and welcome to the community

    I would say most people get off the phone  or after f2f assessment think about what they didnt say or what they missed this is only natural

    Try and relax and wait for the decision
  • rsxrsx Member Posts: 55 Connected
    Thankyou, it's such a long wait isn't it ( I understand why) it's just it give you too much time to think haha
  • cupcake88cupcake88 Member Posts: 873 Pioneering
    @rsx Hi there and welcome I have my telephone assessment on monday and my disability is mental health also I have also been working my self up and wanting to think of the worst situation . How long did yours last for ? Not every one is on medication for mental illness so Im sure they will take that into count . If you are turned down then even tho I know its hard and stressfull but appeal . I know what its like to have anxiety I know it takes over your life . Please keep us updated and good luck 
  • rsxrsx Member Posts: 55 Connected
    @cupcake88 hi, it took about an hour, the man was actually really nice and seemed to understand how consuming mental health is. Thankyou, I have been reading up and I am preparing myself for every possibility although I hope it doesn't come to that. Good luck for monday
  • rsxrsx Member Posts: 55 Connected
    @cupcake88 hi, it took about an hour, the man was actually really nice and seemed to understand how consuming mental health is. Thankyou, I have been reading up and I am preparing myself for every possibility although I hope it doesn't come to that. Good luck for monday
  • mikehughescqmikehughescq Member Posts: 5,929 Disability Gamechanger
    Quick question. If you’ve not been to the doctors do they come see you? How do you manage hospital appointments, haircuts, visiting family and so on? Playing devils advocate obviously?
  • rsxrsx Member Posts: 55 Connected
    @mikehughescq My grandma makes telephone appointments for me if I need them, but thats only if im really desperate as I had a really bad experience with a doctor when I first got Ill and it causes me so much anxiety to speak to a doctor. My grandmas used to be a hairdresser before she retired so haircuts are done at home and any other appointments or visiting family don't happen as I haven't left the house in 5 years.
  • cupcake88cupcake88 Member Posts: 873 Pioneering
    From what I have heard correct me if Im wrong any one but they go off your first applications and every thing you sent in and so they speak to you to make sure it sort of matches up with what u said in application form. I think once my telephone accessment is over I will feel much better waiting for the answer . 
  • rsxrsx Member Posts: 55 Connected
    @cupcake88 yes he asked me questions about things I had put on my application and yes I do feel a bit better now it's over with as I was worrying about it.
  • OverlyAnxiousOverlyAnxious Member Posts: 1,256 Disability Gamechanger
    I also have anxiety & agoraphobia, and a severe illness/injury/body/medical phobia that prevents me even trying medication.  I'm also not able to use phones or face to face therapy due to that...and am fully aware of how that all looks on paper lol.  (Lazy, not trying, doesn't want to get better, etc)

    The lack of medication was used against me initially, and that seems to be quite common.  But I won at tribunal eventually and medication wasn't even mentioned there.

    I'm not totally housebound, can get out very locally just to the supermarket when it's quiet and was able make one slightly longer trip to an elderly relatives for an hour once a week when I applied for PIP.  The current situation has really tested that though.  Even now lockdown has eased I'm not able to visit that relative any more and am really struggling to drive anywhere other than the local Tesco or even walk round the block.  I do my own haircut with clippers.  I've never had a hospital appointment and only been forced to visit doctors twice in the last 5 years which were both awful experiences and not helpful at all, before that I hadn't been for a decade, just try to put up with various physical ailments and keep hoping I can 'go' before they get bad enough to really need treatment.  I have tried to get some help from them by writing letters but they insist on phones so we're at am impasse!  Going slightly off-topic there, but there really is no need for a lot of people to leave the house nowadays.  If I could do online shopping, I'd have no reason to go out at all myself.  Ironically, it's my anxieties around food contamination, storage & transportation that keep forcing me to visit the supermarket at the moment.
  • poppy123456poppy123456 Member Posts: 22,218 Disability Gamechanger
    edited July 2020
    rsx said:
    @cupcake88 hi, it took about an hour, the man was actually really nice and seemed to understand how consuming mental health is. Thankyou, I have been reading up and I am preparing myself for every possibility although I hope it doesn't come to that. Good luck for monday

    Sorry quoted wrong comment.
    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.
  • poppy123456poppy123456 Member Posts: 22,218 Disability Gamechanger
    cupcake88 said:
    From what I have heard correct me if Im wrong any one but they go off your first applications and every thing you sent in and so they speak to you to make sure it sort of matches up with what u said in application form. I think once my telephone accessment is over I will feel much better waiting for the answer . 

    Yes, as well as any other information needed.
    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.
  • cupcake88cupcake88 Member Posts: 873 Pioneering
    @OverlyAnxious if you don’t mind me asking are you awarded pip for month daily living and mobility . 

    @rsx  I’m routing for you I hope you get it I really do sending you so much luck 
  • rsxrsx Member Posts: 55 Connected
    @OverlyAnxious Thankyou, that sound exactly like me, there is nothing I want more than to go back to my old life 5 years ago but I'm just so terrified of trying medication after the last time that I can't do it again.

    I'm fully preparing for having to appeal the decision, mainly so Im mentally prepared if it does come to that and if it doesn't then that's a bonus.

    Just out of interest if you do have to appeal how long did it take from start to finish, I know it will be different everywhere but just to give me a idea.




  • cupcake88cupcake88 Member Posts: 873 Pioneering
    Routing for you so you don’t have to appeal . Fingers crossed 
  • rsxrsx Member Posts: 55 Connected
    @cupcake88 thankyou so much , good luck on Monday I hope everything goes well for you 
  • OverlyAnxiousOverlyAnxious Member Posts: 1,256 Disability Gamechanger
    edited July 2020
    cupcake88 said:
    @OverlyAnxious if you don’t mind me asking are you awarded pip for month daily living and mobility . 
    I don't mind at all.  I couldn't get any Mobility because I can and do go out alone. 

    Not far, not for long, not on certain types of roads or at certain days and times, and I can't use public transport, taxis or even lifts, but because I can go out alone I don't fit the descriptors.  Seems pretty unfair but at least I've let it go and not still dwelling on it...  :D  In all seriousness though, access to the Motability scheme would've been a massive help for me before lockdown, I'm not so sure it would've been much help in the current situation though.

    Being totally housebound, you should qualify for standard mobility.  (Edit - Sorry, got you mixed up with rsx, disregard that if you're not housebound!)

    I get enhanced daily living, partly for OCD & food issues, and partly for 'mixing with people' which was the anxiety/agoraphobia part.

    Hope that helps.  :)


  • OverlyAnxiousOverlyAnxious Member Posts: 1,256 Disability Gamechanger
    rsx said:
    @OverlyAnxious Thankyou, that sound exactly like me, there is nothing I want more than to go back to my old life 5 years ago but I'm just so terrified of trying medication after the last time that I can't do it again.

    I'm fully preparing for having to appeal the decision, mainly so Im mentally prepared if it does come to that and if it doesn't then that's a bonus.

    Just out of interest if you do have to appeal how long did it take from start to finish, I know it will be different everywhere but just to give me a idea.




    I never had an old life, I'm not sure whether that makes it a little easier to deal with...people say you can't miss things you've never had, but I'm not so sure!

    It took just over 12 months between my initial application and winning the tribunal.  Though I think the tribunal waiting times have dropped considerably with the Corona situation.  My tribunal was done on paper in the end, which worked out in my favour, I'd never have got through a telephone tribunal.
  • TopkittenTopkitten Member Posts: 1,263 Pioneering
    I have found that the most difficult and most annoying part of telling people I suffer Agoraphobia is that they always think I cannot go out for "fear of open spaces". Yes, that does happen to people but the official and correct definition of Agoraphobia is "A fear of panic attacks caused by the environment". In my case I could, if appropriately helped and medicated, go out without problems but I have an irrational fear of strangers and strange places. Meaning I simply cannot go into somewhere I haven't been to before unless I have someone I trust with me. But still people go on and on about "Agrophobia" (which doesn't exist) and downplay many of my problems because of it. If medical professionals and ambulance crews can get this so badly wrong what chance do we have of trying to describe it the the semi-trained assessors that are so often used.

    I hope you have better luck than I do because there isn't an actual descriptor to cover my problem in the PIP assessment, as far as I remember.

    TK
    "I'm on the wrong side of heaven and the righteous side of hell" - from Wrong side of heaven by Five Finger Death Punch.
  • cupcake88cupcake88 Member Posts: 873 Pioneering
    @Topkitten can you not get pip for that ? That’s a mental illness it’s apart of anxiety , 
  • cupcake88cupcake88 Member Posts: 873 Pioneering
    @overlyanxious  I would of though you could get mobility . 
  • poppy123456poppy123456 Member Posts: 22,218 Disability Gamechanger
    Having anxiety doesn't mean a person is entitled to mobility part of PIP. It's not about a diagnosis, it's how those conditions affect you.
    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.
  • cupcake88cupcake88 Member Posts: 873 Pioneering
    Oh right that’s interesting to know thanks poppy your so helpful 
  • mikehughescqmikehughescq Member Posts: 5,929 Disability Gamechanger
    edited July 2020
    I take slight issue with @Topkitten definition of agoraphobia. There is very much an official definition (although you certainly won’t find it on Wikipedia for example). The NHS are very clear that the definition encompasses both a fear of open space and a fear of consequences. 

    See https://www.nhs.uk/conditions/Agoraphobia/.

    The whole point about how you explain it to other people is, I think, endlessly fascinating. On the one hand everyone only know what you tell them but you only know what you’ve been told. If you’ve not been given the appropriate language to describe it on the first place... well... what could possibly go wrong?
  • TopkittenTopkitten Member Posts: 1,263 Pioneering
    @cupcake88, don't panic..... lol! I do get PIP but didn't get as high a score as I should have because the strangers and strange places problem confuses people so they tend to discount it. I get  high mobility and middle care but only just qualified (and this for a person unable to walk much, feed themselves and keep clean and tidy (and not to live in a pig sty). There wasn't a specific descriptor to show it so it went in additional details but, as far as I can tell, most of those get completely ignored by assessors. If it isn't covered they don't have any idea how to value it, it seems. I get PIP because I am physically disabled with an invisible disability and all invisible ones get undervalued because it's a judgement thing. I get even a lot of doctors and nurses who cannot understand how I walk at all if I state how much walking hurts. I have no choice but to walk or die of thirst / starvation and so walk because I have to and recuperate afterwards. Again recuperation time is another judgement call. Consequently I get marked down for having to describe it instead of it being easily understood due to a quantifiable  and specific problem. I wont get into the Social Care mess but,since Reablement pulled out expecting other cover to be put in place, 2 weeks on I am back to barely eating and drinking enough to get by (most days I survive on coffee, crisps and cakes) because the care company tried to asses me by telephone and using a woman whose command of English (spoken and understood) was minimal at best.

    @mikehughescq, The definition I found on a medical site (can't remember which) but it clearly states what situations can cause Anxiety and Panic Attacks (usually very closely linked). In fact I believe it to be a "catch-all" phobia because otherwise there would be an endless list of Environmental phobias. Claustrophobia, if you think about it, is also really an Agoraphobia condition as are some others specifically named. Most (if not all) causes of triggering Anxiety are related in some way to a reaction to the Environment such as..... open spaces, enclosed spaces, strangers, unknown buildings, travel by car / train / bus and even some related to using aids like sticks, frames and wheelchairs because of the way we get treated differently. Those are just a few, off the top of my head, that I can think of at almost 4am (sleep issues again). I won't go into details or it will just get boring but if you wish I will quantify any examples you think breaks the descriptor.

    A lot of what I write and say is the product of an intelligent and logical mind, rather than specific references to well known or even not so well known sites (having worked in the Computer Industry for 25 years and written programs and designed systems and then had to train and explain to the users before handover). I have to, for example, describe my main mobility issue to people by shuffling together all the bits and pieces of information I have gleaned from the hundreds of doctors and other healthcare professionals I have seen and spoken to over the last 15 years. and I often get told by A&E doctors that I cannot possibly know what I know to be true, some cannot even understand the difference between the 2 spinal issues despite the fact that one can be seen on x-rays but the other only on MRi'S.  As I have said before my condition is so unique that even doctors and specialists don't understand it and certainly have never encountered it before (especially those you would expect to know about it like the Pain Clinic). If really challenged I will then search for details to confirm my theories (and I have some real doozies, lol!) but normally I am fairly close to the spot simply because I have discussed so many issues with so many so-called "experts". However, everyone is entitled to an opinion and that doesn't mean anyone is specifically wrong, just maybe insufficiently informed by the people who should do better (to paraphrase your own comments). :smile:

    Anyway, it's now after 4am and I really should try to sleep a little, just means moving from room to room and using the bed (causes more problems than using the recliner for sleep) because the damn recliner is still broken since a week into the Covid lockdown. I'm told a new complete metal frame is needed and will take weeks to order and deliver (too large to post and God knows where I will put it when it arrives (escuse the religious statement, just my way of speaking / writing) and then I have to ring them so they can get an engineer to ring and make an appointment to fit it (basically rebuild the whole chair). Along with being told the complicated arrangements I was warned that although it was a manufacturing fault , if it goes again it wont be covered and they will put it down to misuse of the chair. I tried to explain that what she said made me very concerned that the chair was not "fit for purpose" (as I had explained my needs very carefully to the salesman) but it seems that his benefits from getting the sale led him to gloss over certain things (go figure!). The woman replied that she didn't want to worry me but their position was fixed and they would basically blame me and my use. I do hate it when someone puts forward 2 very conflicting statements and then tries to rationalize the impossible. Unfortunately these people don't seem to run into people like me very often, intelligent enough to fully understand and also prepared to argue the point.

    I sometimes think that whenever disabled people have to deal with important issues with the general public we should have half a dozen experts on hand (including a solicitor) so that we get treated fairly.

    TK
    "I'm on the wrong side of heaven and the righteous side of hell" - from Wrong side of heaven by Five Finger Death Punch.
  • poppy123456poppy123456 Member Posts: 22,218 Disability Gamechanger
    @Topkitten high mobility and middle care? there's no middle care for PIP. The awards for PIP are standard and Enhanced for daily living and mobility.
    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.
  • mikehughescqmikehughescq Member Posts: 5,929 Disability Gamechanger
    A fine example I think of over-complicating a relatively simple issue. All of us think our conditions are unique and medical professionals have a habit of encouraging our exceptionalism. Certainly our reactions to our conditions are all different but equally they’re all within a known range. Outside of that range you’re likely looking at an incomplete or wrong diagnosis. I speak from both professional and personal experience on that one as someone who only got the beginnings of an accurate diagnosis in my 40s and only had it refined and complete last year.

    Agoraphobia contains the two strands described by the NHS. Contrary to @Topkitten my experience has been that most medical professionals et al know exactly what it is i.e. both strands, but generally don’t take it that seriously, which is a bigger problem but does to some extent make sense when viewed in the wider scheme of things.

    The idea that there ought to be a descriptor which specifically covers it is a fundamental misunderstanding of what the descriptors are there to do. It is covered on mobility by the overwhelming psychological distress angle and on daily living by the engagement angle. That feels about right to me. It affects specific areas of a persons functionality and it can do so in a big way, but, it doesn’t impact a range of activities like cooking or budgeting etc. 
  • cupcake88cupcake88 Member Posts: 873 Pioneering
    Wish I could understand what’s being said im confused ha . But I’m sure it’s really good advice . 

    My partner will be there by my side tomorrow . I will
    try my best to explain how my illness affects me if I start getting panicked then he can take over .

    im not good at understanding things and taking in what’s being said especially on a bad day . I’m so worried I’ll make no sense and won’t get my point across . I don’t leave the house if I do I have to be with my partner and my dog and I only go for a brief walk . 

    I got to a point where I could go back to work but now I just feel like I won’t ever get back to that point after the way I was treated previously . 

    I feel that my mental illness is obvious to people with the way I act especially on my bad days . 

    I can’t thank every one enough for all the amazing support this community has been amazing . For any one who’s fighting to get there pip please keep us updated as I will be wishing you all well . I will of course let you all know how tomorrow goes for my self . 
  • mikehughescqmikehughescq Member Posts: 5,929 Disability Gamechanger
    Okay then, back on topic @cupcake88 and the first thing to remember about tomorrow is that it’s not about what you want to say. It’s about what they need to ask. People get very stressed because they feel they were denied an opportunity to say their piece but that’s absolutely not what a telephone assessment is about. It’s about a HCP working through the descriptors one at a time and seeing what you have to say about whether you can do each of them reliably. 

    Do not assume that because you can do something you should say that you can. If you can’t do it repeatedly, safely, to a reasonable standard or in a reasonable time then you can’t do it because you meet the definition of not being able to do it reliably. 

    Make sure you have food and drink on you as you may be on the phone for more than an hour and if you don’t understand a question then, rather than have your partner leap in, allow yourself the time to be silent and allow yourself the time to say that you’re not sure what they’re asking. There’s nothing wrong with that and hearing you struggle will be far more valuable than if your partner steps in each time. Forget about needing to  “get my point across”. Focus on what you’re being asked rather than what you want to say. 
  • cupcake88cupcake88 Member Posts: 873 Pioneering
    @rsx

    I wish you all the best with your claim I know it’s worrying but I really hope you get awarded it and you don’t have to appeal please keep us updated and best of luck . 

    @[email protected] thanks for your advice yes I’ll take my time to answer all the questions and hopefully I’ll hear back soon . I don’t think I’ll request to see the points I rather wait for the full decision or just hope I look at my bank account and there’s some lovely back pay in there lol 
  • katho31katho31 Posts: 694 Member
    Hi @Topkitten thanks for your wonderful and insightful/interesting posts, great intelligence  :)
  • TopkittenTopkitten Member Posts: 1,263 Pioneering
    @poppy123456, I'm sure you are correct. That was my DLA award. I cannot remember much about the PIP award itself, I was too stressed out at the time to register it properly, lol!

    @katho31, tyvm for your comment. Made me feel much happier on a bad day.

    @mikehughescq, over the last 2 and a half years I have averaged 1 ambulance a month and a trip to A&E every 5 to 6 weeks. I have yet to speak to an ambulance crew (including Paramedics) who haven;t said "Agoraphobia, is that why you can't go out, frightened of being outside?". In A&E i always have to explain to doctors and nurses what my Agoraphobia is. On average 2 out of 3 assume it's going outside that causes panic. I think it has come about due to people thinking that the Agraphobia (fear of open spaces) is quite common whereas, in fact, there is no such phobia at all, it comes under Agoraphobia and in A&E 1 in 10 tell me I am saying it and spelling it wrong because I have a fear of open spaces, etc,. etc.

    Sorry, not trying to hijack the thread just making things clear.

    I hope things go / went well for those waiting for assessments and or decisions.

    TK
    "I'm on the wrong side of heaven and the righteous side of hell" - from Wrong side of heaven by Five Finger Death Punch.
  • mikehughescqmikehughescq Member Posts: 5,929 Disability Gamechanger
    That’s fine @Topkitten. I think it’s important to remember that the paramedics are not making an assertion. They are asking a question. They would be foolish to make an assertion. What they’re doing is giving you an “in” to explain what’s going on. I think there’s a danger of reading far too much into that and assuming they know nothing.

    HCPs, as we all know, are hugely variable but it does appear that the most knowledgeable are very often the paramedics ahead of many other professions simp;y because they’re faced with something different on most calls and have little choice but to learn and learn quickly. 
  • J35J35 Member Posts: 33 Connected
    hi @rsx i've just been reading through your post, i also suffer with agoraphobia and anxiety and know everything that comes with it. my advice is get the report asap when you can. it's better to know sooner than later if it's going to be good or bad news, if your like me and just sit and dwell on situations for days not having a clear head this can go against you when the time comes and you only have a limited time to appeal. (of course everyone that suffers with a mental illness is not the same for everyone and people deal with things in different ways this is just my experience of what i went through) but my experience maybe could help you / others dealing with what we go through in situations like this. unfortunately it was bad news for me but because i got that report sooner i got through all the dwelling / bad days before the decision letter came giving me a clear head to properly put together my appeal. im almost finished writing up my MR and will be sending it off in the next week or 2 (with CAB helping also) but i do hope you get a better outcome than i did please keep us updated on what happens and take care :)         
  • rsxrsx Member Posts: 55 Connected
    @j35 thankyou, I had my assessment on Wednesday last week, when should I call do you think? I did t want to call too early. 

    I've deffinatly been dwelling on it, trying to pick apart the whole conversations to give myself clues of if the outcome will be good or bad so I deffinatly tho k getting the report will help prepare myself.

    Good luck with your MR hope everything goes well for you 
  • katho31katho31 Posts: 694 Member
    Hi @rsx, my opinion only, but i rang about a week later and it was with assessors, then few more days I rang and was told/ I asked the man if id been successful as I was so stressed out, he said yes and I would get the report in post, it came approx a week or so later, my backpay was paid out well before the letter best wishes  :)
  • rsxrsx Member Posts: 55 Connected
    @katho31 thankyou, I was think about a week, I'll get somone to ring Wednesday and see what they say.
  • katho31katho31 Posts: 694 Member
    Yes i would, its the waiting, it just messes with anxiety and stuff, best wishes :)
  • cupcake88cupcake88 Member Posts: 873 Pioneering
    Hi there I really hope you get your pip great advice there Im the same always prepare for the worst I dont think Ill be requesting  the points to see it rather just wait for the decision do you have one month to challenge it from when you receive the decision  ? I wish you the best of luck please keep us updated . she told me Ill here with in 8 weeks any body here quicker than that .
  • katho31katho31 Posts: 694 Member
    Hi again, is yours a first time PIP application?
  • cupcake88cupcake88 Member Posts: 873 Pioneering
  • katho31katho31 Posts: 694 Member
    Mine was also a first time PIP application, after the telephone assessment I asked some at scopes forum and they said it varies and I had to just be patient and wait at least a week to ten days or so. after a week I rang them, it does take sometimes a long wait on phone but they have a lot to deal with, the man said they had got it and it was with assessors, after a few days I rang back and asked if id been successful and he kindly said yes but no more info. not everyone gets told this I understand. a week later I got my backdated money in account 
  • J35J35 Member Posts: 33 Connected
    rsx said:
    @j35 thankyou, I had my assessment on Wednesday last week, when should I call do you think? I did t want to call too early. 

    I've deffinatly been dwelling on it, trying to pick apart the whole conversations to give myself clues of if the outcome will be good or bad so I deffinatly tho k getting the report will help prepare myself.

    Good luck with your MR hope everything goes well for you 
    i got a text from DWP saying they had my report so i called the day after and they sent a copy to me (this was 2 days after my assessment) and not long after my report arrived, my decision letter came a week after i wasn't expecting it to be the fast and it varies on the time it takes from person to person (i guess i was just lucky) but yes i'd give it a week and call there's no harm trying.

    yeap, sounds like your going through what i did re-thinking of better answers i could of given making the anxiety worse etc..

    and thanks for your wishes i appreciate it 

    @cupcake88 yes 1 month from the date that will be on your decision letter. so be prepared if you have to appeal, also it will help having the assessment report so you can use it to help you with your MR if need be. so my advice is to get it sooner than later but it's entirely up to you what you do  
  • rsxrsx Member Posts: 55 Connected
    @J35 how long after you assessment did you get a text? I haven't had one yet, but I've not stopped thinking about the assessment I really need to ring but don't want to ring too early.
  • cupcake88cupcake88 Member Posts: 873 Pioneering
    @rsx when was your accessment again ? You applied originally in feb didn’t you like myself ? Fingers cross I have been thinking bout you i
    hope you do get the money you deserve . 
  • cupcake88cupcake88 Member Posts: 873 Pioneering
    I got a text regarding my assessment date before a letter there textes seem to be a lot earlier do they text you and let you know if you have been awarded ? 
  • rsxrsx Member Posts: 55 Connected
    @cupcake88 I applied start of March and had my assessment last week. 

    No I think you get a text to say when the dwp have you assessment back from the assessment people (dont know what they're called haha ) so just wanted to see how long it usually is before you get a text to say they have my assessment then i can get someone to ring to try and get a copy, try to put my mind at rest.
  • cupcake88cupcake88 Member Posts: 873 Pioneering
    Oh right so that’s not the final decision one that’s just so you can see roughly what they said did the person accessing your read back what he wrote ? 
  • rsxrsx Member Posts: 55 Connected
    @cupcake88 yes I'm just hoping if I can get a rough idea of what the decision will be good or bad it might put my mind at ease and help me prepare for the next step. The not knowing is making me so anxious.
  • J35J35 Member Posts: 33 Connected
    rsx said:
    @J35 how long after you assessment did you get a text? I haven't had one yet, but I've not stopped thinking about the assessment I really need to ring but don't want to ring too early.
    2 days after my assessment i received the text. but it's different for everyone so no need to worry 
  • rsxrsx Member Posts: 55 Connected
    I finally plucked up the courage to ring for my assessment report, the man was really nice on the phone and said he'll print it off now and it will be sent second class, should I expect it in about 10 days? 
  • cupcake88cupcake88 Member Posts: 873 Pioneering
    Oh that’s great . Did he not tell you any thing over the phone ? I hope you get it soon . I’m complentamating do I just ask for the copy of mines I had a text today to say the report is with them and I have up to a 8 week time to when they will send me a letter with the decision 
  • rsxrsx Member Posts: 55 Connected
    @cupcake88 no he just said he would print it and send it second class. I got my text last Wednesday and I've been so anxious about ring g but also so anxious about not know so I just thought atleast if i have a idea of what the outcome will be I might be less anxious about it.

    Yes I just rang, I was on hold for about 20 mins then I had to answer a few security questions and then I just asked of he was possible to get a copy of my assessment report and he said yes of course, I'll get that printed for you and it will be sent second class and I said thankyou, I was probably only talking to him for about 2 mins, which I was glad about because I just wanted to get off the phone. 
  • cupcake88cupcake88 Member Posts: 873 Pioneering
    I’m very bad on the phone and if I have to wait I’m a anxious mess . I will just wait I think for a decision . I really hope my one doesn’t take 8 weeks or yours . Does any one know how long it takes to get your back pay if you get a yes ? Do you have to wait till the end of that month ? Wouldn’t it be great if we woke up to some pennies in our bank before we get the decision that be a nice Suprise ha 
  • rsxrsx Member Posts: 55 Connected
    @cupcake88 from what I've read the back pay goes in a few days after you get the decision and then your first payment is 4 weeks later, I might be wrong though 
  • cupcake88cupcake88 Member Posts: 873 Pioneering
    Make sure you keep us updated I really hope it’s good news for you if not we are here for support I know how I’m gonna full if it comes back saying I have no points or some thing when I know I deserve more with how my illness affects my life . 


  • rsxrsx Member Posts: 55 Connected
    Thankyou, I hope everything goes well for you too, I'll update when my assessment report comes 
  • cupcake88cupcake88 Member Posts: 873 Pioneering
    Hi I’m on hold to them now to request a copy of my report I thought sod it I’ll get a copy of it I’m really anxious I hate speaking on phone 
  • Chloe_ScopeChloe_Scope Scope Posts: 10,652 Disability Gamechanger
    Fingers crossed for you @rsx! I hope it doesn't take too long to arrive!
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    Scope

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  • cupcake88cupcake88 Member Posts: 873 Pioneering
    I just hanged up was taking ages I’ll wait for my decision 
  • rsxrsx Member Posts: 55 Connected
    @Chloe_Scope thankyou 

    @cupcake88 I was the same, being on hold makes my anxiety awful, I decided I would give it tp 25 mins and then hang up but luckily they answered, i think it said if you call after 10 Tues - Fri the waiting times are less, hope your ok x
  • cupcake88cupcake88 Member Posts: 873 Pioneering
    Hi chloe thank you for your support and rsx I thought I try them now just before they close and guess what still ok hold ha 
  • poppy123456poppy123456 Member Posts: 22,218 Disability Gamechanger
    It can take up to an hour of waiting when ringing 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.
  • cupcake88cupcake88 Member Posts: 873 Pioneering
    I’m still on phone waiting gonna try and wait it out I’m trying to relax I think it would be best to see the report so I’ll request it to be posted to me 
  • cupcake88cupcake88 Member Posts: 873 Pioneering
    We I’ll just spent all that time on the phone to be told there not allowed to send the report out before the decision but can send it out after the decision has been made she said there’s been no decision made yet and she said it was stressing people out so they aren’t sending reports out well just my luck she said the decisions are comming back fairly quickly she said so we will see 
  • poppy123456poppy123456 Member Posts: 22,218 Disability Gamechanger
    edited August 2020
    -Coughs- yes, i've heard them tell people this many times, including myself for my daughters last PIP review. Some will agree to send it and some won't. They most definitely haven't changed the rules, they will send it. Ring again and speak to a different person, chances are the next one will agree to send it to you. As you've seen from many other posts, they do send it.

    There's no timescales for any decision.
    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.
  • cupcake88cupcake88 Member Posts: 873 Pioneering
    I just tried again got threw quicker told same as before . I won’t bother now I’ll wait grr just my luck I just hope if it’s a no I’m told sooner rather than later so can crack on with mr then hopefully i will have a tribunal date before  Xmas lol but I doubt that too 
  • poppy123456poppy123456 Member Posts: 22,218 Disability Gamechanger
    They do send the reports before a decision's made for those living in UK.
    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.
  • J35J35 Member Posts: 33 Connected
    i can confirm. i had my report before the decision they do send it. and good luck @rsx hope its better news than mine was
  • OverlyAnxiousOverlyAnxious Member Posts: 1,256 Disability Gamechanger
    Maybe they've stopped sending reports at the moment due to low staff & high workload in the current circumstances?  Not really fair once you've spent so long waiting on hold though!

    Hopefully the decision won't be too much longer.
  • poppy123456poppy123456 Member Posts: 22,218 Disability Gamechanger
    That's unlikely because a lot of people on here are still requesting and receiving 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.
  • cupcake88cupcake88 Member Posts: 873 Pioneering
    I think I just got unlucky . I’ll wait till I get decision 
  • cupcake88cupcake88 Member Posts: 873 Pioneering
    @rsx I was wondering how you are and if you have a update on your pip ? I’m still waiting to hear back .,
  • rsxrsx Member Posts: 55 Connected
    @cupcake88 hi, I'm not too bad, haven't heard anything yet but I'm going to wait 10 days and then ring them back for a update 
  • cupcake88cupcake88 Member Posts: 873 Pioneering
    Hello there glad your ok I have managed to get some one to send my report out to me so hopefully I’ll  receive that ASAP I’ll keep you all updated fingers crossed for you 
  • rsxrsx Member Posts: 55 Connected
    @cupcake88 that's good, it's deffinatly put my mind at rest a bit knowing the report is coming , I'll let you know when it comes, yes keep me updated on yours, hope everything goes well
  • rsxrsx Member Posts: 55 Connected
    edited August 2020
    Just got my assessment  report back, although the assessor seems to have understood everything I said and wrote it down he's only reccomended 2 points for daily living. He has wrote that I do not use the cooker and only prepare cold food as I'm anxious about cooking things wrong but has score me 0 points as he has said as it's mental health I could learn to use the cooker.

    Also he has said how I get overwhelming anxiety whilst communicating with others except my immediate family but has only reccomended 2 point saying i need prompting to engage with others.

    One positive is he has reccomended 10 points for mobility as I do not leave the house.

    I'm hoping if the decision maker reads his comments they might see they don't match up although I know it's near impossible for that to happen.

    If I do a mandatory reconsideration for the daily living will I still receive the mobility whilst they goes through?
  • janer1967janer1967 Member Posts: 9,108 Disability Gamechanger
    Hi sorry you are not happy with your report 

    If the DM goes with the report and awards standard mobility you will get this payment from date you applied even if you do MR
  • cupcake88cupcake88 Member Posts: 873 Pioneering
    I asked this same question the other day and I was told yes so you will still receive it while it’s going threw is that your final decision tho or just the report ? You never know you might score more for mobility or daily living 
  • rsxrsx Member Posts: 55 Connected
    That's good thankyou 
  • rsxrsx Member Posts: 55 Connected
    @cupcake88 thankyou, it's just my assessment report, he seems to have listened to everything I said I wrote it down accurately, just what he has ticked doesn't match up.
  • cupcake88cupcake88 Member Posts: 873 Pioneering
    @rsx have you received your actual decision yet or just the report ? Also can I just ask when was your assessment im
    pretty it was the same week at mines 
  • rsxrsx Member Posts: 55 Connected
    @cupcake88 No I haven't received my decision yet just my assessment report.

    My telephone assessment was 22nd July.
  • J35J35 Member Posts: 33 Connected
    @rsx on your report have you got any boxes ticked which state what you should be awarded or does it say it in the comment box underneath stating they recommended it?  
  • rsxrsx Member Posts: 55 Connected
    edited August 2020
    @j35 I'm not 100 percent sure what you mean sorry

    Hes just ticked the box and then wrote a comment about what I said about the question in the comment box but he hasnt wrote what what he thinks should be awarded in his comment
  • J35J35 Member Posts: 33 Connected
    @rsx mine and your reports sound very similar but i'm guessing you have ticked boxes on yours? i didn't have any ticked boxes on mine but in the comment box it was considered giving me enhanced on both parts but the assessor didn't tick any boxes so i was just wondering if you was in the same situation.   
  • rsxrsx Member Posts: 55 Connected
    @j35 yes mine had ticked boxes and a comment after it on why he had ticked that box
  • poppy123456poppy123456 Member Posts: 22,218 Disability Gamechanger
    rsx said:
    @j35 I'm not 100 percent sure what you mean sorry

    Hes just ticked the box and then wrote a comment about what I said about the question in the comment box but he hasnt wrote what what he thinks should be awarded in his comment

    They don't need to write what they think you should be awarded. That's what the boxes with the dots are for. Underneath that they need to write their justification, which will be their reasons for the descriptor they are recommending.


    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.
  • J35J35 Member Posts: 33 Connected
    edited August 2020
    you have ticked boxes which is good. @poppy123456 summed it up perfectly. mine was different because no boxes were ticked so in the comments it said it was 'considered' i get enhanced on both parts because no boxes were ticked. but i guess that means nothing as the boxes were not ticked..    
  • rsxrsx Member Posts: 55 Connected
    @poppy123456 @J35 thankyou that makes sense, I'll wait and see now what the decision letter says, I feel less anxious about it all now as I have a idea of what's to come.
  • rsxrsx Member Posts: 55 Connected
    I haven't had my decision letter yet but my back pay has gone into my bank today so I know I have only  been awarded lower rate mobility.

    I'm going to try and start writing my MR today, so fingers crossed for that.
  • cupcake88cupcake88 Member Posts: 873 Pioneering
    Oh that’s good im
    glad you got some pennies and I hope you do get daily living also goof luck with it all . I just checked mines lol nothing yet I haven’t recieved my decision letter ha so I don’t know when I’ll be getting mines or how long for 
  • rsxrsx Member Posts: 55 Connected
    @cupcake88 No I haven't received my decision letter either, hopefully today I will and I'll find out how long for, it reccomended 18 months on my assessment report because it said mental health problems can change quickly so should be reviewed every 18 months, don't know if it's the same for everyone. Hopefully yours goes in your bank soon 
  • cupcake88cupcake88 Member Posts: 873 Pioneering
    Did yours go in at mid night ? I’ll check mines tomorrow 
  • rsxrsx Member Posts: 55 Connected
    @cupcake88 I'm not sure,I was checking somthing at about half 8 this mornong and saw it had gone in
  • OverlyAnxiousOverlyAnxious Member Posts: 1,256 Disability Gamechanger
    Payment times have changed for all banks recently (in the last year or so), payments can now appear at any time but is usually early hours of the morning.

    I got a 3 year award but my MH issues aren't likely to improve any time soon.  It's down to the assessor/decision makers discretion at the end of the day though.
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