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Agoraphobia and anxiety
rsx
Member Posts: 52 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
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
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
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.
Sorry quoted wrong comment.
Yes, as well as any other information needed.
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.
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...
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.
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.
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
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?
@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).
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
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.
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 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 .
@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
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.
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
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
hope you do get the money you deserve .
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.
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.
Scope
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@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
Hopefully the decision won't be too much longer.
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?
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
pretty it was the same week at mines
My telephone assessment was 22nd July.
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
I'm going to try and start writing my MR today, so fingers crossed for that.
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
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.