PIP, DLA and AA
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positive or negative experience claiming benefits and why ?

[Deleted User][Deleted User] Posts: 231 Pioneering
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  • [Deleted User][Deleted User] Posts: 587 Listener
    With ESA I've had bad experiences, the assessors I had literally did not understand my mental problems, I was deemed fit for work pretty much back to back by ATOS, I appealed both times and won.

    In regards to PIP I have had both positive and negative experiences.


  • [Deleted User][Deleted User] Posts: 231 Pioneering
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  • [Deleted User][Deleted User] Posts: 587 Listener
    edited November 2019
    Pretty much, the ATOS assessors failed to understand how my mental health affects me and the PIP assessor (the recent one) failed to assess the nature of both my mental and physical health and how they impact each other and how it affects me on a daily basis because we both know that FM and mental health problems go hand in hand a lot of the time and that when our pain is worse our mental health is worse and when our mental health is worse it makes our FM worse. It's a bit of a vicious cycle really. We also know that FM is still being researched.

    I hope I made sense there?


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  • wilkowilko Member Posts: 2,355 Disability Gamechanger
    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. 
  • [Deleted User][Deleted User] Posts: 231 Pioneering
    edited November 2019
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  • Victoria32Victoria32 Member Posts: 4 Listener
    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. 
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  • Victoria32Victoria32 Member Posts: 4 Listener
    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. 
  • Ami2301Ami2301 Community Co-Production Group Posts: 7,751 Disability Gamechanger
    I have had a positive experience with PIP, my Mum is my appointee due to my hearing difficulties and she filled out the form on my behalf. We sent all the evidence with my claim, at this time I was undiagnosed (later diagnosed with central vision loss, ataxia and transverse myelitis) but was diagnosed with bilateral hearing loss. 

    I remember struggling to walk to the assessment centre, even with the support of my Mum. I could not answer any questions as I didn't know what the woman was saying. The physical tests I done, I couldn't do them. I really struggled to stay awake in the assessment either.

    Mum told me that the assessor mentioned her family member was currently going through the same as what I was - symptoms wise - I'm guessing that might have helped her to understand why I applied for PIP.

    I was awarded enhanced daily living and enhanced mobility for 1 year.

    Due to hospital admissions, etc, I did not have my review until May this year, this time around I wanted to try and fill out the forms myself, it took me a while but I did it. 

    I thought the questions would be complicated but they were straightforward - "How has your condition improved/worsened?" Or "What aids do you use".

    At first, the questions did overwhelm me, but I took my time and answered them in as much detail as I could. This time, we had a lot of evidence, lots of diagnoses, discharge summaries, physiotherapy and occupational therapy reports etc. All of that was sent off with the claim.

    It was arranged for me to have a home assessment, and the assessor was lovely. She was fully aware of my hearing difficulties and really took her time to help me understand what she was asking. I managed to answer all of the questions myself and I was honest about that I would love to work and I miss working.

    I was awarded enhanced daily living and enhanced mobility for 10 years.

    My advice is if you struggle to fill in the forms, ask for help before you apply to claim, then it doesn't add the extra worry of trying to find someone or an organisation to help in a short space of time.

    Send all your evidence WITH your form - I'd advise against showing all the evidence to the assessor at your assessment as they don't have time to read through it thoroughly.

    The point of the assessment is to clarify what you have stated in your form.

    If you can fill in the forms yourself, research online if you need something explained a bit clearer.

    The wording they use, for me, is not difficult to understand, it was just a case of taking my time to read through and understand what they were asking.
    Disability Gamechanger - 2019
  • janer1967janer1967 Member Posts: 11,201 Disability Gamechanger
    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 
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  • Victoria32Victoria32 Member Posts: 4 Listener
    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. 

  • pollyanna1052pollyanna1052 Member Posts: 2,032 Disability Gamechanger
    Good post justdon!

    Reading through many PIP comments, mainly from people who have not had successful outcomes, and as has been pointed out so many times, PIP isn't about diagnoses. It is about how they affect you and what aids and help you need.

    People run the risk of being denied a claim when they focus on the name of a disability.

    If we can get this vital information out there, hopefully, there will be more success rates for the genuine claimants.
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  • chiariedschiarieds Community Co-Production Group Posts: 9,180 Disability Gamechanger
    Hi, with Disability Living Allowance, a GP from another practice came to my house. He insisted I could walk further than I'd said, or he'd seen me do. In the end he had me tearful, which is not me, & I just wanted him out of my home, so in the end agreed with him. I also didn't have any diagnoses at the time which seemed unhelpful.
    Someone from CAB came out to help with my tribunal appeal. I didn't feel it particularly helped, as she was just writing down what I said, & I didn't get any input. I ended up sending in medical evidence, which was fairly new, in the form of medical abstracts saying Drs didn't know why, but people with my putative disorder often had chronic pain.
    When I got to the tribunal, with my son, the judge said they had unanimously decided before I arrived that I should be awarded DLA.
    With PIP, I thought things would be easier, as we all know, it's about how your disability affects you (rather than a diagnosis), altho' by then I had a diagnosis of one of my physical disorders,
    My PIP assessment took place next to a Physio department. I mentioned I was a physio, as I've always done when meeting any medical professional. Within minutes she said, 'Oh, I know all about physios, I hear the cries of pain from the next room.' I started saying, 'No, it shouldn't be like that,' & she cut me off saying, 'I was just joking.' I think understandably from then on I felt very ill at ease. She typed away, barely looking at me, & when I tried to elaborate on my difficulties, she just said she'd come back to it later, but didn't. Afterwards, I felt fairly sure she'd missed a section out.
    A few days later, I got a phone call from a very polite, & seemingly understanding man, asking some more questions. He even asked if I had a wet room, as for no apparent reason the assessor had argued with me, refusing to believe I had one.
    Much to my surprise, I then got a letter saying I had to go for a PIP assessment. Rang up, & was told I did, & that probably the assessor would just ask a few questions. I was assured it would be a different assessor at a different centre in the same town.
    The next assessor could not have been nicer & we were told she would spend 15 mins going through my 'evidence' before I went in, which she obviously had. I had to have a full assessment again, however, she was so good, I even thanked her for her help as we were leaving.
    The decision letter however was not what I expected.....I could walk further than the 6metres that had been seen, because I didn't see 'a pain management or physiotherapy specialist!' I rang the DWP up incredulous, & asked if they wanted to see my physio certificate. Yes, they did want to see a copy! The decision maker had also disagreed with the assessor saying I'd said my pain medication was effective, whist the assessor had correctly reported it dampened the pain down a bit..
    I wrote a Mandatory Reconsideration letter, & got more points, giving me what I felt were the correct awards.
    With PIP, IMHO, these are the problems I see:
    a. The forms to fill in can be harrowing; we don't often fully say all of our problems to anyone. I had to dictate mine to my son, as it's painful for me to write. He knows me very well, but said he hadn't realised how bad it was.
    b. You need to understand the 'descriptors.' I was fortunate to have been emailed a copy of the Benefits & Works guide by my support group who made it available to any member that asked. This led me to understand things like explaining where it might be 'reasonably' expected to use an aid, why I didn't, e.g. I couldn't use the wrists splints my GP had prescribed as they caused bruising. I also mentioned medications & treatment I'd had in the past which either were ineffective or caused unwanted side-effects. Things like this 'may' be helpful to also show the severity of your difficulties.
    c. The assessor may correctly fill in the tick boxes, but then has to use phrases from the system they use that can be widely inaccurate, measuring them against the fact that you need to have seen a specialist to validate your statement. I apparently do not have panic attacks, & other problems because 'I don't see a Mental Health specialist.'
    d. The Decision Maker has no medical knowledge, yet they look at the assessor's report to see if it's consistent with your diagnosis. I am not typical of those with my diagnosed disorder; many here know that the same condition varies from person to person, which is what PIP is supposed to be about, so why do our diagnoses/or lack of any, come into it?
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  • OverlyAnxiousOverlyAnxious Member Posts: 1,438 Disability Gamechanger
    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! :p  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! :D  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.
  • OverlyAnxiousOverlyAnxious Member Posts: 1,438 Disability Gamechanger
    justdon said:
    And this is another thing i find very odd about pip ..
    They will penalise someone for being able to drive yet there are people who are able to get funding for a vehicle ?

    This one actually does make sense when you look at the descriptors.

    For enhanced mental health mobility you need to be unable to plan or follow a journey without experiencing overwhelming psychological distress and need another person with you at all times - so if you can drive you're unlikely to get that!

    For enhanced physical mobility you need to not be able to walk further than no more than 20 metres.  These are the people who are allowed cars as they physically wouldn't be able to use public transport and need to park close to the destination which is fair.

    Personally I would massively benefit from the peace of mind and low running costs of a Motability car and would also be able to get something that fits my needs (very smooth ride etc) but would never get it on mental grounds and my stomach and bowel issues don't count at all for PIP.  It does feel a bit like discrimination between mental and physical health but equally I appreciate that there's not an endless pot of money for cars!
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  • 66Mustang66Mustang Community Co-Production Group Posts: 5,091 Disability Gamechanger
    edited November 2019
    I have had positive and negative experiences and put it down to luck. So far I have had more good experiences than bad ones.

    I have claimed ESA (support group), DLA and PIP in the past and have had a decision made without attending a face-to-face assessment. They accepted my conditions and made their decisions based on my forms and on the medical evidence I sent them.

    Most recently I had to attend a face-to-face assessment for my PIP with an assessor who, in line with many others here, very much played down my conditions. As above, they cut me off when I tried to explain the difficulties I faced, saying we’d come back to that later, and never did. I also noticed them typing away frantically when I mentioned something I could do, but not typing much, if anything, when I mentioned something I had trouble with.

    Based on my own experience, which is all I have to go by, I disagree that the assessors are incompetent - I think they were VERY competent and were purposefully excluding information that would have supported my claim. In other words they were doing the job of saving the DWP money very well! The fact this is totally unethical is a different topic of discussion.
  • poppy123456poppy123456 Member Posts: 22,218 Disability Gamechanger
    Hi,

    I've posted my story many times on here and i don't know whether you know it but just incase you don't, here it is.

    I first applied for DLA in 2012, about 6 months before PIP came out. I really knew nothing about the benefit system at all at the time. I didn't have a lot of evidence either but was struggling with my health so thought i'd apply. Sadly i was refused and didn't bother to request the MR because at the time my knowledge was almost zero and i didn't realise i could, so i left it as it was and carried on struggling with life.

    Fast forward to when PIP started, i decided to apply but again my knowledge was almost zero. I did have some evidence this time from Consultants, OT assessment reports, aids to help at home that were installed and recommended by an OT. I received the forms and contacted my local CAB who helped me fill them out. Limited information was put on the form but at the time i didn't know any different. I sent the evidence with the form to support my claim and i waited and waited. Backlogs at the time were huge and i waited 11 months for a face to face assessment.

    I attended the assessment and seen a lovely female HCP who was understanding and polite. I answered all the questions as best i could. I honestly didn't expect to be awarded anything at all. I requested a copy of the report and when i added up the points recommended it was Standard for both. The decision maker went with the report and i was awarded for 3 years.

    My condition did get worse about 18 months later but as with most people i was scared of reporting those changes because i didn't want to lose what i already had so i left it as it was. Review came 6 months later and again i got help filling out the forms from CAB. Limited information was put on the form but i did send evidence to support my claim. Face to face assessment needed, which i attended and again it was a female who was really lovely. Understood my conditions and she sat and listened while i answered the very few questions, which was mostly aimed at my mobility. Very short assessment again and she did say she didn't know why i was there. 4 days later i had a phone call from the decision maker asking me when my mobility got worse. I answered and he said thanks, you'll receive my decision within the next 7 days. The following day i rang DWP to find the decision had been made, Standard daily living and Enhanced mobility until November 2020.

    At the same time as the PIP claim i was also waiting for my first work capability assessment for ESA. Attended that assessment not knowing what to expect and really had no idea what it was about. Again the HCP was nice, friendly and polite. The assessment was very short and stopped after only about 15 minutes and she said she had enough of information. Decision came and i was placed into the support group. Next review was 3 years later, got help with the forms, sent evidence to support my claim and this time i had a paper based assessment and was kept in the support group. 2 years later review time, this time i filled in the forms myself, sent evidence to support my claim but needed a face to face assessment this time. HCP was unbelievable, she was one of the nicest i've ever met. So friendly and understanding. Helped my into the assessment room by letting me hold into her arm. Walked me out to meet my daughter and again let me hold onto her arm. Decision came and was kept in the support group.

    Then i started to do some research about 4 year ago because i wanted to gain some knowledge into the benefit system so i searched the internet and read as much as could. The research stretched to most of the benefit system because i wanted to help others that were struggling. That along with my own experiences has got me where i am today, helping others as much i can. Being accused of working for DWP countless times in the past and being up against some very cruel people, with no hearts and no manners, it didn't put me off and my help extended to here. I joined scope and was asked to be a Community Champion, of course i accepted and my support continues here.

    I put in a claim for PIP for my daughter in August 2017. Got help with the forms but this time they were filled out badly and i know i should have filled them out myself but it was a daunting thought. I'm her appointee and filling out a form for someone else especially my daughter was scary and i didn't want to let her down. I didn't receive a copy of the forms that were sent and hardly any information was put down on the forms and i worried constantly because i know she was entitled but thought she'd be refused because of how badly the forms were filled in. I did sent evidence with the forms that proved beyond doubt that she was entitled to Enhanced for both parts because by this time my knowledge had grown considerably.

    She was granted a home assessment without the need for a letter from her GP. I answered all the questions on her behalf during the assessment, while she rocked in the chair looking at the floor. We waited just over 6 weeks for the decision because the report was sent to audit. I received a copy of the assessment report which recommended Enhanced for both parts. Decision came and it went with the report.

    fast forward just one year and it was review time for my daughter. This time i decided to fill the forms out myself. I put as much information as possible and added 2 real life examples of what happened the last time she attempted that activity for each descriptor that applied to her. I was aiming for a paper based assessment. Sent new evidence to support her claim. She did have a paper based assessment and they contacted someone from the learning disabilities team and this person new her very well. Decision came, Enhanced for both parts again.

    My story proves that there are good HCPs out there and not everyone's experience is bad. It's just a shame that those who are awarded successfully don't come onto a forum and start telling their stories but this isn't going to happen.

    There's no certain way to fill out the forms, there's no special wording that you should use, just tell it how it is. Take your time and do a little each day, then put the form away until the next day. Do this until the form is complete. It's definitely not easy filling out those forms but it's doable because the only person that knows how your conditions affect you is yourself. There's no time to sit there explaining your conditions to someone from an advice centre because they have very limited time. Some won't agree but we all have our own opinions and this is mine.
    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.
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  • poppy123456poppy123456 Member Posts: 22,218 Disability Gamechanger
    No problem @justdon however, you said this. " I think the problem is sometimes ,you can come across as being quite blunt and at times it does seem as if you are almost defensive of the DWP"  ?

    That is most certainly not my intentions, which is why i spend so much of my time trying to help others here. Also reading text speak can often be misread and it's not always easy to "read" someones tone and that tone can easily be mistaken and that's definitely the case here. I have no idea why anyone would think i'm in defense of DWP when i claim benefits myself lol. I wouldn't be here if i wanted to defend them.

    The moral of the story here is never judge a person by it's cover and judging me is what some members do and have done and that makes me sad especially because i try my hardest to help so many people here.
    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.
  • chiariedschiarieds Community Co-Production Group Posts: 9,180 Disability Gamechanger
    edited November 2019
    Hi, thank you Poppy for telling your story, as I'd only previously read about the latter part. I think your caring nature comes across by the countless people you answer who are often asking the same questions, yet you show great patience in answering them especially as regards benefits. I doubt if there would be enough hours in the day to express anything other than the knowledge or facts that you do get across so well. I am saddened to read that some have been more than impolite in the past, & that must be hurtful, yet still you have carried on.
    You raise some points I am in complete agreement with: just fill in any form doing a little each day & it's probably better trying to write a little down over a period of time than just repeating your difficulties to someone from an agency.
    I also found writing an 8 day diary down helpful, as mentioned above that can be helpful in deciding what to write in your forms. In my case I sent it off with my PIP form as I didn't have much medical evidence.
    Edit: Takes me so long to type hadn't seen Poppy's 2nd post here. We're all in this together, trying to help one another.
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  • poppy123456poppy123456 Member Posts: 22,218 Disability Gamechanger
    @justdon i'm sorry you've felt that way but it's most certainly wasn't my intentions. As you know i've helped you a lot too in the past.

    When i mention text speech, what i meant was someone's tone of voice. When you're reading a message on a forum it's often very difficult to read a persons tone and it can sometimes come across as being offensive but that's not the case for me. My intentions here are purely to help others and nothing more.

    When i first claimed benefits i never went on forums and for me i think it was better that way because i didn't read the bad stories so i never knew any different.
    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
    chiarieds said:
    Hi, thank you Poppy for telling your story, as I'd only previously read about the latter part. I think your caring nature comes across by the countless people you answer who are often asking the same questions, yet you show great patience in answering them especially as regards benefits. I doubt if there would be enough hours in the day to express anything other than the knowledge or facts that you do get across so well. I am saddened to read that some have been more than impolite in the past, & that must be hurtful, yet still you have carried on.
    You raise some points I am in complete agreement with: just fill in any form doing a little each day & it's probably better trying to write a little down over a period of time than just repeating your difficulties to someone from an agency.
    I also found writing an 8 day diary down helpful, as mentioned above that can be helpful in deciding what to write in your forms. In my case I sent it off with my PIP form as I didn't have much medical evidence.
    Edit: Takes me so long to type hadn't seen Poppy's 2nd post here. We're all in this together, trying to help one another.
    Hi @chiarieds thank you for that! and you're welcome.

    Sadly we or even i can't please everyone, despite the amount of time i spend here. There will always be someone that doesn't like someone else on a forum.

    Thankfully there's a lot of people that do appreciate my advice here and i have to admit i've made a lot of friends in my time here and that's something i'm grateful for.

    The diary is good advice, although i didn't do that for any of my claims but it certainly does help some people.
    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.
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  • poppy123456poppy123456 Member Posts: 22,218 Disability Gamechanger
    @justdon when have i ever accused you of being a child? lol
    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.
  • WhileIBreathIHopeWhileIBreathIHope Posts: 216 Member
    Mine were all set up by gate keeper social workers and key workers. 

    The knife of austerity was used to cut the lot. 

    I had an ATOS assessment and believe that knowing the keyworker would be harder to ignore facts and tell lies- written confirmation of cancelled appointment letter.

    Next I got you didn't attend a cancelled appointment and everything cut. 

    Months of nothing and rent arrears MP found it almost impossible to get an explanation and account un sanctioned. 

    MP changed and a sodd off letter from DWP as Autism cured- housebound with zero income..
    My experience KEY workers, Social workers and even local job centre staff locked out. 
    I got treated like human filth and in the same manner the Nazi's made targeting disabled.

    DWP and those who condone their conduct deserve to be held accountable 
  • Victoria32Victoria32 Member Posts: 4 Listener
    I was falsely led to relax in my face to face assessment. Made to talk and made to feel comfortable. As a result the assessor felt I wasn't eligible for PIP. 

    This has made me not able to trust anyone. 

    Has anyone on here appealed for PIP and what should I expect? 
  • [Deleted User][Deleted User] Posts: 587 Listener
    I don't post on here too much because I get fed up of feeling like people are making assumptions and they come across as being a tad rude and abrupt and I don't deal with that too well. I'd rather speak in pm to someone I've made friends with on here rather than on the forums.

    @justdon I didn't think you were doing that and I'm sure if Poppy did she would tell you herself.

    @Chobbly I'll try and explain another time, my anxiety is kicking my bum ATM.
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  • [Deleted User][Deleted User] Posts: 587 Listener
    Np at all @justdon X thank you x
  • chiariedschiarieds Community Co-Production Group Posts: 9,180 Disability Gamechanger
    edited November 2019
    Hi @justdon - I feel this an important subject you've raised; for example Overlyanxious showed that benefit 'criteria' didn't appreciate, nor show much understanding, of the problems they faced. This is sadly too often the case. Let's work together to raise awareness, as best we can, of the many diverse problems we face, which often share similar communalities, so this may become accessible/understandable to all, including assessors.
    If you may consider:
    a. certainly 'invisible disorders' are poorly understood (I have one, if not 2); I believe you've also mentioned this.
    b. Pain is misunderstood, & is subjective....it can be difficult to describe this objectively, so that others understand (including assessors)
    c. It's sometimes difficult to receive advice, however well meant, as you may not have felt you have sought this (even if this was indirect).... so this is sadly ignored.
    Hey, as Poppy said, she was just telling her story; mainly about circumnavigating benefit criteria.
    Please let's be kind to each other, & also reach out to understand more from each other.
  • [Deleted User][Deleted User] Posts: 587 Listener
    edited November 2019
    @Chobbly I'll try and explain now but I'm pretty pants at explaining.

    So the negative things with ESA were that I was awarded ESA at one point just for having a fractured ankle and yet they never took my mental health seriously, and they deemed me fit for work twice pretty much back to back, first time I waited 12 months for the appeal, around 3 months after winning that appeal, they send me another form and again they deemed me fit after the assessment, the second time I waited 18 months for the appeal because they lost my paperwork, I won that appeal also, during this period of time I was trying to feed both myself and my Son, plus pay the bills and such. It ended up making my health worse. They used excuses like, "looked clean", "wasn't rocking in her chair". 

    I think you saw my post about PIP? I'll link the main one below as I made two about PIP :)

    https://community.scope.org.uk/discussion/59580/pip-report
  • cristobalcristobal Member Posts: 968 Disability Gamechanger
    edited November 2019
    chiarieds said:

    Hey, as Poppy said, she was just telling her story; mainly about circumnavigating benefit criteria.
    Please let's be kind to each other, & also reach out to understand more from each other.
    @chiarieds - fully agree...

    The point about being receptive to advice is a good one - and this is an advice forum after all, as it says on the header at the top of the page. Without wishing to 'compartmentalise' people too much if you look back through the posts they seem to fall into three general groups -

    • Those looking for advice
    • Those who post a question - and are looking for people to agree with them
    • Those who continually post about how poor the DWP are, and how everything is corrupt..
    The thing about advice is that, if it doesn't sound right, then you don't have to take it. There's no need to start an argument, or post offensive comments, even if the advice isn't what you want to hear. 

    Your point about being kind, and understanding each others point of view is also a good one. I've personally had a really good experience with DWP, and a complete nightmare with Capita, but the thing is to always remember that you are dealing with individuals, albeit working within a certain company framework. They are not corrupt, lazy, incompetent, untrained - some might be, but most are not. You get lazy, corrupt people in every job, I imagine.

    I've given up pointing this out now, having attracted a wide range of abuse including 'jackbooted thug', Nazi, 'shouldn't post on here as you work for the DWP'. It can be upsetting, and make me wonder why I bother to help, but after all being abusive is only conceding, very impolitely, that the other person has a better argument than you do!

    As you say, respect is the key thing. 

  • WhileIBreathIHopeWhileIBreathIHope Posts: 216 Member
    WF2k said:
    @Chobbly I'll try and explain now but I'm pretty pants at explaining.

    So the negative things with ESA were that I was awarded ESA at one point just for having a fractured ankle and yet they never took my mental health seriously, and they deemed me fit for work twice pretty much back to back, first time I waited 12 months for the appeal, around 3 months after winning that appeal, they send me another form and again they deemed me fit after the assessment, the second time I waited 18 months for the appeal because they lost my paperwork, I won that appeal also, during this period of time I was trying to feed both myself and my Son, plus pay the bills and such. It ended up making my health worse. They used excuses like, "looked clean", "wasn't rocking in her chair". 

    I think you saw my post about PIP? I'll link the main one below as I made two about PIP :)

    https://community.scope.org.uk/discussion/59580/pip-report


    Need to act up then, If I knew what I know now I would have happily soiled myself in assessment centre and a change of clothes in car. 
    I never got the opportunity to even get lies written about my issues 
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  • WhileIBreathIHopeWhileIBreathIHope Posts: 216 Member
    justdon said:

    What i can see so far ,is that if you know how to use the system to your advantage, then you are at a disadvantage .
    Unless you have someone very knowledgeable on your side helping you with the paperwork and educating you about critera ,discriptors and how certain questions will be framed and aimed at you  etc then you are also at a disadvantage .

    Thanks so much for your replies, i do feel this is an important issue.





    Exactly, previously a recognised Social Worker etc would be Classed as an expert and DWP would accept what they had to say. 

    Now in my opinion it is a corrupt game to raise the bar to a level that people either feel the wait and tribunals process harrowing or don't bother to go to a tribunal as mentally they cannot cope. 

    According to DWP I was fit for work based on a cancelled appointment with cancellation letter and non compliance with a cancelled appointment--No alternative appointment ever offered.

    Further to this recent letter to my partner which DWP know about for years asking questions from 2012-seeing as we get nothing.
    DWP can go forth and multiply 
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  • [Deleted User][Deleted User] Posts: 587 Listener
    I feel like I'm not reading the same thread as a few others in this thread, not once have I seen anyone attack or disrespect others in this thread? I've seen a person say they weren't happy with something but the person certainly wasn't attacking anyone.

  • cristobalcristobal Member Posts: 968 Disability Gamechanger
    edited November 2019
    @justdon - I agree - no-one was asking for advice, nor posting offensive comments, nor treating anyone with disrespect..

    If you read my post again I was responding to an earlier post by @chiardes...about being receptive to advice and treating each other with respect  ...

    Please re-read it - the context in which it was written is very important..

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  • poppy123456poppy123456 Member Posts: 22,218 Disability Gamechanger
    Chobbly said:
    @WF2k

    While i have you here :smiley:...Do you know anything concerning Enhanced premium?


    I receive UC single mans over 25 and LCWRA
    PIP is enchanced for both(zero points last sept--work that one out!)

    So, im not sure what premium is and whether i receive whatever it is...lol...Hopefully that makes sense..
    Been awake since 3 am...then dropped off at 8am-9.30am and havent felt right since...So typing is at a minimum today!
    Hi,

    As you're claiming UC then the premiums don't exist for this unfortunately. The LCWRA on top of the standard allowance for over 25's is  actually more than ESA with the Enhanced disability premium, if worked out correctly as a monthly payment.
    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.
  • [Deleted User][Deleted User] Posts: 587 Listener
    edited November 2019
    No sorry I don't @Chobbly I'm currently on ESA still. I'd ask an advice centre or the DWP for information on that. 
  • poppy123456poppy123456 Member Posts: 22,218 Disability Gamechanger
    @Chobbly i did answer your question a few times.
    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.
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    edited November 2019
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  • [Deleted User][Deleted User] Posts: 587 Listener
    @Chobbly it's ok, I feel the same way, it's a load of gibberish to me also lol.

    Yeah you'd be better off asking in your own post/thread because this thread was related to another subject so your question would end up being lost.

    Chobbly is one of my favourite people on here as of today :) That makes 2 LOL.
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  • [Deleted User][Deleted User] Posts: 587 Listener
    @justdon I do try when I'm not anxious, I love humour and sarcasm, sarcasm is the best lol. 
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  • [Deleted User][Deleted User] Posts: 587 Listener
    @justdon agreed, my Dad was a very very funny Irish man, some of the stuff he used to come out with literally made us cry with laughter. Anyway, I'm going to shut up as the thread is about positive and negative benefit experiences and not about me being funny lol ;) 
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  • JurphJurph Member Posts: 346 Pioneering
    I'm one of those that had good and bad.

    I'd been struggling for a number of years, seen many specialist but as I live with my parents, I didn't think I'd qualify for anything. I had previously had an NHS low income certificate to help with prescriptions/glasses/dentists as although I was fed, clothed and housed, my parents just didn't gave the money to help with the extras.

    When I was diagnosed with Fibromyalgia, I realised that I was unlikely to improve enough to hold down employment. After a few months of soul searching and investigations, I applied for ESA and PIP. 

    I filled out both sets of forms honestly. If I didn't need help, I said so. If it was only some of the time, I said so. I didn't know anything about 'descriptors' or anything like that.

    My PIP f2f came first, it was a month after I applied. She was lovely. She didn't push the physical assessment and allowed me to explain.

    Boy, was I wrong. The decision letter came 2 weeks later - a big fat 0 points. An awful lot of assumptions were made. I drive therefore I can bathe. Nothing that I'd now consider a lie but I couldn't believe it. Every single reason for refusal was 'is less than 50% of the time'.

    I came on here and did some research about how to do a Mandatory Reconsideration. I called up and asked for the assessor's report, but it never came! I had to send in my MR ysing just the decision letter so I didn't miss the deadline. I had someone at the CAB go over it before I sent it,

    2 weeks after I sent in my MR (and 3 calls later), I got the assessor's report. Helpful! My MR came back - still 0 points. They didn't reference my evidence or take into account that I had 5/6 appointments coming up with specialists (9 month wait for Hydrotherapy!)

    I can on here to ask advice and decide to appeal. I had nothing to lose so felt it was worth it. I contacted a local advocate who was brilliant. She thought my appeal was good and didn't change anything, she didn't actually do much but the moral support was invaluable.

    When I got my bundle, the decision maker had made the decision the day BEFORE they received the information they requested from my GP.

    The tribunal was scary and exhausting but after hearing my evidence, they awarded me standard care and enhanced mobility. They wrote a strongly worded letter to the DWP about making decisions before they receive the evidence THEY requested. The whole thing took 18 months!

    I had my first ESA f2f before I received my PIP decision (I'm thankful for that!) They put me straight in the Support Group. I was reassessed 16 months later and was again put in the Support Group.

    Interestingly, I wrote to my MP about the difference in assessments to be given the 'they're different benefits' standard response only to find out a month later that they were support a single assessment! Go figure!

    So yes, one awful, one pretty good!
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  • WhileIBreathIHopeWhileIBreathIHope Posts: 216 Member
    @justdon
    @Jurph

    My concern is the lead times and a numbers game tapering off those who managed to see it to conclusion. 

    My personal opinion again is a disability support person or charity the only way to get through the nightmare. 

    Tomorrow I have another hospital appointment about my walking and off to work later. 

    I'd be interested in the fibromyalgia descriptors, how would you say one day I can do xyz and next I can't think straight and joints on fire. 
  • chiariedschiarieds Community Co-Production Group Posts: 9,180 Disability Gamechanger
    Hi @WhileIBreathIHope - I don't know if you've looked on the internet for information on 'Fibro fog;' my apologies if you have. See for example: https://www.arthritis.org/about-arthritis/types/fibromyalgia/articles/fibro-fog.php My thought is perhaps some of the descriptions there will echo with how this makes you feel & be useful in thinking how to write about it. And about the joint pain, saying you have a burning pain in whichever joints are affected should be fairly easily understood. Then add that you feel like that probably 4/5/6 days a week, whichever it is for you.
    There may be much better sites to look at, so you could try & few.

  • WhileIBreathIHopeWhileIBreathIHope Posts: 216 Member
    chiarieds said:
    Hi @WhileIBreathIHope - I don't know if you've looked on the internet for information on 'Fibro fog;' my apologies if you have. See for example: https://www.arthritis.org/about-arthritis/types/fibromyalgia/articles/fibro-fog.php My thought is perhaps some of the descriptions there will echo with how this makes you feel & be useful in thinking how to write about it. And about the joint pain, saying you have a burning pain in whichever joints are affected should be fairly easily understood. Then add that you feel like that probably 4/5/6 days a week, whichever it is for you.
    There may be much better sites to look at, so you could try & few.

    I’ve a diagnosis of fibromyalgia and yes I have got stuck after a hospital appointment I couldn’t think straight several years ago.
    My symptoms better, but I still get days I go out to work feeling like I have been on a bar crawl and beaten up.

    I’d like to assure people fibromyalgia and pain are real, I work as much as I can and not a malingerer- nor am I camped out on benefits as the last person I tried to explain to said.

    stay frosty
  • poppy123456poppy123456 Member Posts: 22,218 Disability Gamechanger
    PIP isn't about a diagnosis, it's how those conditions affect your ability to carry out daily activity based on the PIP descriptors. Yes, i fully understand what fibro is because i have it myself. as well as other conditions.

    It's how your conditions affect you at least 50% of the time over a 12 month period. You need to explain in detail how your conditions affect you. Giving a couple of real life examples of what happened the last time you attempted that activity for each descriptor that applies to you.

    Do bare in mind that even though people do work and claim PIP, if the work you do contradicts the reasons for your claim then this can go against you when a decision's made.
    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.
  • WhileIBreathIHopeWhileIBreathIHope Posts: 216 Member
    PIP isn't about a diagnosis, it's how those conditions affect your ability to carry out daily activity based on the PIP descriptors. Yes, i fully understand what fibro is because i have it myself. as well as other conditions.

    It's how your conditions affect you at least 50% of the time over a 12 month period. You need to explain in detail how your conditions affect you. Giving a couple of real life examples of what happened the last time you attempted that activity for each descriptor that applies to you.

    Do bare in mind that even though people do work and claim PIP, if the work you do contradicts the reasons for your claim then this can go against you when a decision's made.
    I’d rather set fire to myself or a DWP office than be manipulated by DWP again and caged like an animal fearful any efforts to better my situation-with fact if you want to do any courses or work then it is used against you.
    I tried for years with sun shine smiles and we will look into it- life is a lemon I want my money back

    I ‘d love a more appropriately suitable job, I’m all ears for this nirvana of self employed job or hello boss stuck on a toilet, may be in this evening.

    Notice my council for direct payments in the BBC news for wrong doing- the comments section says it all. A scandalous situation others and myself suffered.
    We are not going to get justice and nobody will be accountable.

    so I will have to suck it up and struggle till I drop.
  • chiariedschiarieds Community Co-Production Group Posts: 9,180 Disability Gamechanger
    @WhileIBreathIHope - Please know, I completely believe you. I have some understanding about fibromyalgia, as many people with one of my disorders (Chiari 1 Malformation) were often mis-diagnosed with fibro, so I read a lot about it, admittedly several years ago. I have chronic pain, so I know how badly it can affect a person, & how hard it is to live with.
    I feel everyone here is completely genuine & wish as justdon has mentioned that integrity would shine through.
    I'm only just beginning to realise how difficult it is for some here to complete the necessary PIP forms. The more people say, I hope the better we will be able to understand each other as I feel this very important.....& a way forward, so that people get the help they need.....both in knowing they're supported here & in completing the forms.
  • WhileIBreathIHopeWhileIBreathIHope Posts: 216 Member
    chiarieds said:
    @WhileIBreathIHope - Please know, I completely believe you. I have some understanding about fibromyalgia, as many people with one of my disorders (Chiari 1 Malformation) were often mis-diagnosed with fibro, so I read a lot about it, admittedly several years ago. I have chronic pain, so I know how badly it can affect a person, & how hard it is to live with.
    I feel everyone here is completely genuine & wish as justdon has mentioned that integrity would shine through.
    I'm only just beginning to realise how difficult it is for some here to complete the necessary PIP forms. The more people say, I hope the better we will be able to understand each other as I feel this very important.....& a way forward, so that people get the help they need.....both in knowing they're supported here & in completing the forms.
    I agree that frustration of situation should not be used to tear chunks out of each other, just hope that people see as a loose knitted group of individuals we are being targeted in the most narcissistic and awful way by a systematic denial of disability.

    thanks for your input 🙂
  • JurphJurph Member Posts: 346 Pioneering
    My tribunal did mention Fibromyalgia when I sat down. They reassured me that they deal with a lot of people with Fibromyalgia. 

    Whether that means a lot are denied or that there's more understanding, I'm not sure.

    However, I do think that as wonderful as places like this are - the balance will always be to the negative. People don't sign up to these message boards to say claiming PIP was easy.

    I think most people are like me and come here for help when it goes wrong. Therefore, the majority of stories here will be negative.
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