positive or negative experience claiming benefits and why ?

The assessors are not there to give a diagnosis or fully understand every illness or disability that is presented to them for assessment either for the PIP or ESA descriptiors. The assessors job is to ensure that the information  you submitted in your application form is correct and proveable from the assessment process. Many of us fill in the application form either not reading the guidelines or plain ignorance and hoping for the best. So take your time filling in your form, read the guidelines and understand the descriptiors that you are writing about. 

I have recently been declined PIP. The assessor claimed because I work and drive a car and was able to verbalise in the assessment I didn't have mental health issues and I don't live in pain on a daily basis. I have appealed and awaiting an answer.

This is my first time of applying and accepting I have a disability and live in constant pain and I have struggled to find jobs that suit me. 

I had help filling in the form by a support worker who used to be an OT. 

I have scoliosis which due to my age surgery is not possible. So I live in constant pain. My previous job told me to get it labelled as a disability as it was affecting my health and physical ability. And so I did and then to be declined it's knocked my self confidence and has had an impact on my mental health. 

You can get funding for a vehicle but you have to use PIP for it. I've looked into it. I need an automatic car now as a manual is too much. 

I got declined for a blue badge aswell. 

Just very frustrating and hard to come to terms with especially as there are people out there who have claimed said benefits but don't need them. 

Hi I have had good and bad experiences claiming benefits. My PIP claims have been without any issues and my recent review resulted in a higher award and this was without having to go through a f2f assessment. I completed the review form with lots detail only sent 2 bits new evidence and had call from decision maker to ask few questions.
However my fit for work did not go as well was declared fit for work after assessment did MR which gave same outcome so went to tribunal where I won my case but took 13 months of stress and waiting and being made to feel like i was a fraud. So in summary good and bad. I know they are different benefits and criteria but could save a lot of Gov spending if the process can be linked 

It can be easier I feel for people who have visible disabilities. Hidden disabilities can be harder to show and get support for. 

And that's where I feel the issues lie. 

I respect everyone who applies as its not an easy process to go through. 

Negative - because there's no flexibility in the system.  They can't adapt even slightly to something out of the norm.  We are expected to overcome our conditions to suit them.  Then unless you slot perfectly into their descriptors you're not deemed disabled enough for an award anyway. 

Buckle up!   For those that haven't been following my 'story', I suffer from agoraphobia, OCD, IBS and social anxiety.  This basically means that amongst other things I struggle to leave the house, travel far, stay out of long, deal with crowds or traffic, enter indoor 'contaminated' places or deal with people face to face or on phones.  

Firstly, I applied for the wrong benefit (and take full responsibility for that) - JSA instead of ESA.  It became immediately apparent at the F2F that this wasn't suitable as I couldn't commit to their distances, non-flexible times or the 'training days' that I would have to go through, however they wouldn't let me terminate the application and forced me to go through the whole thing!  I was even laughed at when I suggested a 'local' courier job...  I can only assume the assessor thought items were delivered across the country door to door in the same van...for those that don't know, they local vans only cover a small area!  Trucks move parcels between major hubs...  Anyway, I obviously didn't get it.  But then had to try and get some medical evidence (fit note) for an ESA application...I had not been to a Doctors surgery for 4 years due to contamination fears, and had almost no recent medical history - bar one course of Sertraline which was prescribed by a previous GP who didn't understand that my phobia of illness prevented me being able to risk the side effects of SSRI's...needless to say I couldn't take them, but kept them just in case I ever reach the point where I can take the lot at once!   I then had to go through a lot of agro and sending letters etc to get a new GP in my now-local surgery and try to get enough info across to them for a fit note.  I won't go on about that as this is a DWP thread!

So the first issue I had with ESA is not being able use telephones...I've managed to get through every other aspect of life despite this, but not NHS or DWP.  I'm not just being awkward, I can barely get any words out on the telephone and those that I do are often misheard or misunderstood.  Just spelling my name or NI number is a huge challenge...yet it would take 10 seconds for me to type and would have no chance of being misheard.  

For this reason, I typed and printed the ESA form and took it to the local MyGo centre (which was set up to take youngsters away from the real jobcentre).  My health conditions were shouted out across an open plan room full of people and I was made to feel like a massive burden and extremely embarrassed.  I was then told I'd have to wait while they phoned it through and I'd have to speak on the phone to confirm things as well.  I told them I couldn't stay that long or speak on the phone and asked why they couldn't just post it after I'd gone to the effort of filling it in?  After around 30 minutes, they finally sent me to the 'adult' job centre...where a nice lady took the form, stuck it in an envelope and told me it would be sent next day, I didn't even have time to sit down...why on earth didn't MyGo know to do that OR ask someone who would know!?

A few weeks later I was sent to the ESA assessment...again at MyGo.  It was now winter which I struggle with more due to contagious viruses everywhere and they had selected a mid-afternoon time, which would obviously be crowded and full of traffic in the town centre.  I forced myself there and then had to wait in a crowded open plan room full of people coughing and sneezing for over an hour without being told anything.  Eventually I couldn't cope any longer, felt my bowels 'drop' (those with IBS will know this feeling!) and I just had to run out of the place...got stuck in rush hour traffic, had a panic attack and soiled myself in the car.  This whole experience exacerbated my conditions and I wasn't able to leave the house for a while after that.  I sent an email somewhere (ESA presumably?) asking **** they were playing at making people wait with no explanations and obviously not taking health conditions into account.  And finally saying that I could not do another face to face in the near future due to their incompetence (worded slightly better than that!) and that I couldn't use phones so didn't know how to continue…  I never did get a reply, but started receiving ESA a few weeks later!!  

This was fine for a couple of years until my slightly understanding GP left and I was moved onto yet another ignorant fool with no idea about mental health.   When the ESA renewal came though he tried to force me into the surgery in the middle of winter...  Despite me sending letters and emails explaining contamination fears etc they wouldn't back down so I eventually said I'd try to do it, as long as they chose a time that would be low traffic and fewest people in the waiting room.  They chose 8.30am...middle of rush hour...and when I finally got through the traffic the waiting room was absolutely brimming with people, it turned out to be flu jab day, and not only that, they were doing the jabs right in the waiting room in full view.  I really cannot cope with needles or crowds and just had to try and get through it until my name was called.  I got into the GP's office in a complete mess, I could barely say anything, I couldn't understand the GP's accent and he couldn't understand me either, we wasted a good 10 minutes while he made the receptionist look for a form that turned out to be in his own bloody desk!  And by the time I left I was in a much worse position than I had been in for a while.  This was purely because of ESA & the DWP, I would not have needed to visit the surgery if it wasn't for that.

Then just 3 months I later I got another ESA renewal form come through which absolutely terrified me, I was still not recovered from the last GP visit and was so scared I'd have to go back!  Then, yep, the GP started phoning and writing to ask me to go back.  I had absolutely no chance of that this time!  It went on for months until eventually I was sent to the jobcentre for a full ESA assessment...  This was probably the least worst DWP experience tbh, although it was town centre, luckily I was given a 'quiet' time to arrive and then told that although there was a delay it was only 10 minutes.  Once I got in, the assessor apologised for the delay and seemed fairly understanding and asked straight, fair questions and didn't keep me any longer than she had to.  She was really surprised that the GP wouldn't sign off the form with the problems I had and said 'off the record' she had no doubt that I'd continue to receive the ESA...which I did.  I later found out the GP has to see people every 6 months in order to sign off the forms...and that mine had forgotten I'd been there just 3 months before...I certainly hadn't forgotten the experience!!!!


At around the same time I was considering PIP due to a severe lack of income (I have to live alone due to conditions but only entitled to shared housing rate, again no flexibility in the system!) but couldn't face the DWP again, and wasn't sure I fitted any of their criteria despite some very obvious restrictions in the real world.  I left it for a while but the rent was increased and then the electric went up and groceries etc as well...I had no choice but to apply for PIP this year (March) which started a whole new world of hell!!  

Firstly I sent a letter to DWP asking for a PIP form to be sent to me as I can't use phones...complete waste of time, no response.  In the end I had to force myself to make a phone call for the first time in years...  I did make me immediately ill, stomach and bowels started moving and cramping, reflux coming up etc, I even used speaker phone and put the phone out of sight which I thought might help but it didn't.  I couldn't really understand the guy on the other end of the line and he couldn't really understand me either, took several attempts to get my NI number across to him and apart from that I don't really know what else I said...apparently I said I wanted text updates as I later found out when my phone kept pinging (I never text anyone, messenger only so I can control when I open it!) which I regretted.

Then the form came through and tbh it was all very complicated...I'm usually alright with forms but this was a bit beyond me.  I asked for email help from the local disability service but they wouldn't do it...phone advice only...ARGH!!  **** you Alexander Graham Bell, I wish these damn phones had never been invented!  So I had no choice but to do it myself... spent a week writing down a diary of things trying to work out what fitted with each question etc...and then had to hand write several pages of information...I can type all day long but who hand writes now!?  Took a few sessions over a few days to write it down...and most of it was illegible as I've got a minor but constant shake (anxiety related I think!) so I also typed it and included that with the form in case they couldn't read it!  Then I had to try and find some evidence...oh dear...I don't have any medical history, haven't seen a CBT therapist for over 2 years so didn't know if she still had any info (apparently not!) so all I could send was a psychologist report which was about 50% incorrect and from 3 years ago...  As it's all I had I put it in, but stated that some things were wrong!  (In hindsight I wished I'd left it out.)  Anyway, I posted it and just hoped that they'd realise I couldn't do F2F, but of course they don't take any notice and send everyone for a F2F unless you ask for a home visit instead (I cant have people in my home due to contamination etc).  

I was sent a super early 8.30am appointment but fortunately not too far away from home...  I was very ill in the run up to the day, lots of stomach and bowel issues, no sleep etc.  I managed to get there just in time and paid to park in their car park, knowing I'd have that refunded.  I arrived in sunglasses despite it being a dull day and hammering with rain (this will make sense later on).  I got in and sat down...and was then taken to a side room and told the assessor hadn't turned up so it was cancelled...  I had the option to return later or PHONE for another time...  Obviously I had to chose to return later, and was given a slot for 2 hours time.  Tbh it felt like they were trying me as I can't cope well with change.  With my bowels being very bad I had to return home in between and spend an hour sat on the loo, by this point I was feeling completely drained, dehydrated, nauseous, fatigued, lethargic and even worse than usual...I didn't dare eat anything either though.  Somehow I got back to the appointment, again just in time...and was given 2 forms to claim back the travel expenses for both trips - and told to send them separately with the parking receipts as proof once I got home.  I had passed panic by this point and was in that 'numb' state when everything is just too much and you don't really know what's going on.  At this point I expected to go straight into the assessment and get it all over and done with asap...but no, I had to sit in the waiting room for about 15 minutes which I later found out was for them to read the form.  I was called in...and told there would be two people there (I can only cope with one at a time) as one was observing, but she wouldn't speak (not sure what difference that makes!).  I was still wearing my sunglasses at this point mostly due to light over-sensitivity but also to avoid eye contact in social situations.  I don't really remember much of what I was asked but I had to keep shifting in the seat as I felt a lot of motion (like vertigo) and like I was going to pass out, I was also gripping my calf muscle and kept ticking (I have a neck cracking tick as well as other) and with my spare hand holding the travel expenses forms which were no soaked through with palm sweat!  By the half way point I felt so nauseous and the reflux was so bad I just wanted to get out of there but had to do everything I could to remain in the seat and just finish the assessment.  At the end I was given some sort of survey, didn't even read it, just circled something and was told to put in a box outside...  I got out into the waiting room and couldn't see a box anywhere, I had to ask 3 times where it was before finally finding it and being allowed out.  I walked across the carpark, got the car door open and just slumped into the seat.  Tbh I didn't feel safe to drive but had to get home so I did...  I would never normally push myself to this point, again it is the DWP that caused this. 

So, I never did receive BOTH travel payments, only one...and of course there's no way to rectify that without a phonecall, which I did try but again couldn't get anything understood...and was extremely p*ssed off to be told the person on the other end would write my concerns into an email...are you for real!?  Anyway, of course I never got any further response so am still down for the extra travel costs.

Next, I received the decision letter.  0 points.  'I cannot award you for anything...' making me feel like I'd made it all up.  Had I made it all up?  Am I just one of those lazy scroungers?  I expected to be awarded something, even if not the full amount!

It was at this point I joined Scope which is the best thing I've done so far regarding benefits.  The help from Poppy, Hart, Chloe, Adrian, Spiceman etc (too many to list!) is invaluable!!  I found out firstly I'd written way too much in the form...  And then found out about 'descriptors'...which are different to the questions...sneaky buggers!  I then had to ask for the assessment report, which is again another effing telephone call with no other way to do it!  

Now here's the interesting part, when I read the form I suddenly realised where a lot of the leading or obscure questions had been.  I mentioned about having to check traffic before leaving home and not leaving if there was an accident etc, the assessor wasn't interested but jumped in with 'oh, Google Maps?' which it isn't but I said yes as I didn't have the energy to explain it's actually a police app lol...but obviously that proves journey planning without actually asking it.  I was also asked if I read magazines, to which I replied no, which surprised her...'Oh, but you can read though?'...  Yes obviously, I wrote the damn form...  But that was a question that's obviously designed to ask 'can you read' without actually asking.  There are a lot of these if you go back through it!  She pushed me through my problems with food until she reached 'oven chips' and then was no longer interested because she knew she could use the oven to stop me meeting the food prep descriptor.  Then the weirdest question 'do you play video games?'...yes, not sure what that has to do with anything...turns out it's to test mental cognition etc...but just because I can shoot people in a crowded game doesn't mean I can do it in real life!  I also didn't have a chance to explain that I only play one game as I cant cope with the change, and I play it without a microphone as I cant cope with talking to other people on it.  Then we got onto more interesting points...like the fact I maintained good eye contact....through my sunglasses!?  I didn't appear distressed, just a little anxious to start and then settled...not true at all, my soggy travel forms, stomach, bowels and days of muscle aches from all the tension proved otherwise!  And for every descriptor it just mentioned the fact that I don't take any meds so cant be that bad, the only evidence I have is 3 years old so disregarded, and I arrived alone by car so can obviously go out...which is true, but I cant use public transport or cope with people regardless of who they are...it would have been more difficult to take a person with me so I have to try and do things alone.  Though as this isn't a common problem, it's not noted for PIP at all.  There are plenty of people who claim mobility that are far less restricted than I am in terms of distance and time etc...but I just don't fit neatly into their boxes. 

So I wrote the mandatory reconsideration with help and advice from members on here, focussing on the main areas I thought I should be awarded based on their silly descriptors - food prep and mixing with people.  Didn't change the result, still 0 points...only this time they'd gone on to mention the fact I have a licence and only take 15 minutes to shower which isn't of any relevance to what I wrote in the MR!!  Actually the way it's worded it really does look like I'm making it all up and wasting their time.  I don't usually get offended as I'm quite open minded and not too fussed what other people think but I did feel discriminated against with this in all honesty.  It felt like they hadn't even read the MR, just tried to find something else in the original decision!

So I am now at tribunal stage...and of course that's not been easy either.  In truth, I know I can't do the F2F tribunal, but also that I don't have enough evidence for a paper tribunal.  I do like the fact that it can be done online, however, it took 2 weeks to receive the email confirmation that should have taken 3 days...had that not arrived, I would have had to PHONE to rectify that as there's no email available for them.  Tbh I didn't really know what to write for the tribunal...I got advice from a few people both on and off here but either I'm losing my mind or this is all overly complicated because I still didn't really get it.  I sent the online application and am now waiting for the DWP to respond...I don't even know what to do after that.  I can't think of any way that I can explain things in a way for normal people to understand and probably won't be able to get many words out in person...if I can even get there and get inside the building!  But it's all too late anyway, I can't afford life right now...even if I get it in say 12 months time, what am I meant on until then?  Backpay is pointless, I don't want a lump sum in a years time when I need to pay the bills now!  I'm stuck in a flat that doesn't meet my needs, unable to afford bills and groceries, with a car that doesn't meet my needs and isn't trustworthy and just getting worse and worse mentally and physically.  I know money doesn't solve everything, but I'd be in a completely different situation if I had enough to afford a flat and car that meet my needs, and wasn't worrying about every grocery item I buy or how cold I can let it get before having to use the heating briefly.  And of course, on top of all that the ESA isn't at all secure either, I could be retested any time now and lose all of my current income...and even if that doesn't happen I'll eventually be pushed onto Universal Credit which I'm dreading based on my previous DWP experiences.


TL:DR I'll be amazed if anyone reads all that...  Ironic that I can barely speak but can type out anything I need to...  Surely the DWP should be taking this into account and making the system accessible for everyone, as well as flexible and giving all benefits staff the correct information and training.  And above all I'd scrap the current PIP system.  I can happily provide a list of all the extras I have to pay for due to my conditions and wouldn't expect any more than that.  It would be a much fairer system than just basing how much extra money you need on a few different tasks rather than looking at the whole picture.  I saw elsewhere someone suggested DWP might be reading Scope...I'm fairly sure they're not as they're not but if they are...please start allowing email contact and stop doing everything on damn telephones, it's no longer the 1970s.