PIP assessment - views on others experience please , here's mine

[jt68]

Hi, just wondering about other people's experience when it comes to the DLA To PIP changeover at present I get the medium care rate and upper mobility rate of DLA. I have been suffering badly with fibromyalgia since my hysterectomy in 2010. On top of this and previous to the actual fibro diagnosis I was diagnosed with spondyloarthrapy (seronegative) and hypermobility. Until 3 years ago I worked as a marketing manager, a high pressure job which I loved immensely, but after the diagnosis and added complete exhaustion I basically went on sick pay as the pain, exhaustion, insomnia and anxiety became too much. In 2012 whilst still working I was assessed by ATOS and awarded the medium care rate and enhanced mobility for 2 years. I also claimed ESA and was put into the support group after my advisory at the job centre recommended to the dwP that I should be in the support group not the wrap. I, sadly, was then made redundant from my position, and I can't at all blame my company, they couldn't keep my job open forever. In 2014 my case was reviewed for DL A and I was yet again given the medium care rate and enhanced mobility rate until August this year. Then my postcode was in the area that are now switching DLA To PIP and I was notified that I had to change to PIP, so I applied via telephone to switch, waited 2 weeks for the forms, and 2 days after the former arrived, I was sent both texts and mail informing me I should send it back ASAP. After waiting 2 weeks for the forms to arrive, then they wait 2 days for it to be returned is just so unfair. Anyhow, after taking a week to fill it in, bit by bit owing to severe pain whilst writing, I sent off my claim just before their deadline, it was 4 weeks before they sent me another appointment with ATOS for yet another interview and physical exam. This happened this morning. The examination centre has switched address, it is now in an area with excessive traffic, 5 steps to get in the front regular entrance, alternatively you are sent through a maze of car parks to arrive at the back entrance that has very limited parking facilities. Slightly, the back entrance to the reception is a long measured out corridor, I was totally exhausted just by walking half way but there are no seats to rest. The receptionist was kind and sympathetic but kept me standing for a while chatting. I Told her that I hated to be impolite but I needed to sit as soon as possible and keeping me standing meant I was in excrutiating pain. She gave me an apology and took me to another waiting room where there were seats. It took me over 10 mins to walk with my crutches to the waiting area. I was lead into another room at 30 mtrs away 5 mins later, another ploy, no doubt to test my mobility, but I did take my time getting there being totally and utterly exhausted and near to tears with pain by the time I got in the examination room. The examiner was very nice, but also a speed talker, and I had to ask him to repeat several phrases as he sped through my questions. He more or less asked me the questions on the forms but weirdly also read me my answers more or less, but he also switched names on my for to test me, he actually said, "so your daughter prepares your breakfast because you can't do it yourself" what I actually stated on the forms and more importantly, the truth, was that I stated my son or my husband prepare breakfast. (My daughter goes to work two hours after I get up at 6 am my husband or son leave for work about 7am, so they do my breakfast, hubby does fruit, yogurt, cereal, son does scrambled eggs as hubby as an egg phobia) then he said "and your husband prepares your lunch, is that right? I replied, no that's incorrect, My daughter prepares my lunch, she is the only one that returns home at lunchtime. After that the rest of the questions he flew through at an astounding pace, he just basically read out my form. Meanwhile, I was sitting in the hardest chair ever, and every 2 mins kept having to stand up with the help of my crutches to alleviate my back and buttock pain. After whizzing through the rest of the form, he then did a short and very painful exercise with my hands and knees, I actually cried out, I was in so much pain. He didn't press me to do more, he said that he wasn't the decision maker and would pass his observation on to the decision maker and the final decision would be the DWPS. He then virtually marched me out of the room, but I took my time, and wouldn't be pushed into rushing. I worked out that the entire "interview" took around 35 mins, this includes the excrutiating walk to and from the waiting area to the car. I have no idea whether my interviewer took any notice of the pain I was suffering whilst being interviewed, he came across as very caring but didn't really take on board my anxiety or pain issues. I'm now worried sick that he skipped through my form because he didn't believe my condition was that severe. He said that the outcome isn't his decision and that it will be 8 weeks before the DWP will give me a decision either way. I Returned home and slept for the rest of the day I was so exhausted. Its now 12:30 am and time more midnight dinner, if anything Positive has come of this it is that I have slept solid for 6 hours this afternoon, best sleep I've had in ages on the downside, my fibro is in RAGE mode now. AGONY. Just hope the whizz kid that inerviewed me is on my side, fingers crossed, i'll keep my fellow sufferers informed ( special thanks to my friend Freddy for typing this for me - feel a bit like Matt Lucas in Little Britain as Barbara Cartland, on my couch dictating my memoirs) Cheers Freddy ☺

[TheAuthor]

Hi jt68

I am so genuinely sorry that you had to suffer and struggle for this assessment, and I sincerely hope that you are feeling better now. It is quite strange that many of these disability assessment buildings are not actually disability friendly? If I was to go out somewhere and not be able to gain access then the company could face fines under the disability discrimination act? It could be a pub, or a shop, a restaurant or an entertainment venue, but they all have to be disability accessible. Yet these organsiations appear to be able to get away with it? Unless nobody has actually ever tried to pursue a case against them?

I have never been through anything of this nature myself, but I want to sincerely wish you all the best of lcuk with your PIP outcome, and please take care of yourself.

All my hopes and dreams for you

Ken

[Rose54]

Hi

Sorry you had such a bad experience

If you ever have to fill n PIP again and I hope you wont

Their is a section that asks if you need any help re attending assessment

You can put that you are unable to manage steps or morning or afternoon appointment or home assessment .

Your experience is the same as most

normally they read your application before you go in and always ask you the same questions as on the form.

A few questions to test your memory and mental capacity.

Medical is standard

All assessors are medical professional, Nurses .Physio, Midwifes etc earning extra money on their day off. And may know little about the illness they are assessing .

I hope you kept copies of the form and had someone help you complete form .

Fingers crosses you will get a good result

Take Care

Rose

[jt68 in reply to Rose54]

Thanks. I (or my husband) copies everything in triplicate. Although, i didnt take a copy of my form in with me, i dont need to because i have been totally honest about how my family helps me with everything on a daily basis and the excrutiating pain I suffer every day. I took copies of all my rheumatology and specialist appointments. My OT and physio regime, but the assessor didn't want to look at them, he said he had copies of everything. And didn't need them.

I said how could you possibly have everything ?, I visited the hospital 2 weeks ago, that's 4 weeks after I submitted my PIP form, so I need you to add the other meds that my specialist prescribed please. He also asked why I needed so much help with my physio routine, I answered because some of it involves person support and for 1 particular part I sit on the floor and I can't possibly get on the floor and up again without assistance. I told him that I had brought a copy of the physio routine and could show him why I needed assistance, again he declined to look. Another question was about my med and that I had listed that my hubby puts my daily doses in a box for me and I have set alarms on my mobile to remind me to take them. I said, I can show you the alarms on my mobile, it's in my pocket, again he declined. He was extremely pleasant, but also declined other evidence of my routine. So, I really don't know whether he believed me or not. The worst part was definitely the excruciating walk (aided by elbow crutches) to the waiting room and then further to the exam room, I have barely moved since I got back , i am so sore, feel like I've been kicked everywhere. 😯

[Rose54 in reply to jt68]

HI

I hope you get a good result

If they request information from your health professionals they have to pay of it, chances are they will not do this and therefore will not have all information necessary .

The assessment is not a fair process and their are a lot of people who play the system and get away with it .

I am not saying you or anyone on this site is doing that .just that it is unfair to those who have a genuine need and entitlement to these benefits .

If you ae not successful you must appeal but get help with it .

Best Wishes

Rose

[Lesley_ann]

Hi Freddy,

I have such empathy with you as I had a similar experience 9 day's ago which I posted. Most of the thing's I was complaining about where the same as yours and most of the replys I got also had the same experience. I think I can say we all felt that the assessor was trying to trip us up or putting word's into our mouths ! Not only are we treated unfairly but I think disrespectfully. I hope you get the right decision take care Linda

[Jcwg]

Hi Freddy

I'm sorry you had an awful experience, I honestly don't think the people forcing us into these situations have any idea what effect it has on us never mind joe hard it is for us.

Please can I just ask your advice regarding you saying you got ESA them later on you were made redundant. I was under the impression if you were working you could claim PIP but not ESA? Hope you don't mind me asking but my head is boggled with it all.

Take care

[rosewine]

I think it is disgusting that there are was not disabled friendly and this is happening everywhere. I know in one of the local towns people went to their local MP as even the disabled ramo was too steep and alot of the interview rooms are up stairs! Doorways were not wide enough for wheelchairs, etc etc

Thelocal MP got on the case and if course it got in the local paper. The centre was shamed and they accepted it was not disabled friendly and actually had a disabled association in to give them pointers and have put things right. If people don't complain unfortunately nothing will be done.

I can imagine you were quite traumatised by the experience and I really admire you for going through with it as I can tell by your post that it has completely wiped you out. Just hope they come to the right decision and quickly. By the way I think your friend Freddy did an excellent job on the typing.x

[jt68]

Thanks for your good wishes and comments. I actually was working when I applied for DLA. I Loved my job and the people I worked for and with, and never thought i would have to stop work, but my health deteriorated so much and that I had no choice. My firm was very supportive, and contacted me regularly. Then I was on the sick and had to apply for ESA when SSP ran out but at that time I was still employed. I have paid 25 years of tax and national insurance into the system and felt like a beggar having to apply for both ESA and PIP. I was put in the WRAG group but after my first ATOS assessment and only appealed when the jobcentre advisor told me too, she even said that she would be a witness at my appeal if necessary.(even though you have a job, u still have to sign on on ESA and take advice about getting back to work) I actual didn't get to a tribunal, the DWP changed their decision before it got to tribunal, and I was placed in the Support group. Sadly my firm couldnt keep my job open forever but they very kindly paid me redundancy rather than just sacking me. So in answer to your query, you can claim ESA If you worked and your employers SSP expires. (and have contributed to the tax and NI stamp system) and by the way Freddy is a neighbour and dear friend who kindly typed my post for me as I was too shattered to do it myself. Thanks once again for your good wishes ☺

[Hidden]

ive to 2 pip buildings none have parking for visitors. both have no access from roadside since both have wrap around barriers along roadway both on very busy roads.i feel this is done deliberate.

waiting on result of my recent pip.first one my partner and i both felt not listened too and judged.no eye contact as we were shown into room.walk was more than 500 meters . i was added and had to stop.getting to room had taken a good 15 to 20 mins.by which time im shaking uncontrollably head to toe sweat pouring outta me.oh yeah as i was saying we felt judged no eye contact no handshake no name given.she was very rude and disrespectful all way through.i wasn't even offered a drink of water nor tissues during said interview.got to point i couldn't get my words out and my partner had to speak for me,these pip interviews i feel like im to be ashamed of how i am.that result i got 2 points.LOL

now several months later im unable to even walk few steps. our house has and still been fitted with aids around house.my body feels like 90 years old not body 40 year old. ive worked all my life and even served in armed forces.

i also was teaching upto couple years ago. thats when my body changed,

gone from sailing, rock climbing, hiking ,real outdoor type ,to someone who needs helping getting up etc.its hard real hard .i only found out why body is now screaming in pain.and lack of normal function to my body.and why i tire from simplest of actions and i need to sleep.

yet we are forced to account for reasons why we need help.

the system needs to change for the better.

and not to feel ashamed etc . waiting on recent pip.

[jt68 in reply to Hidden]

Ta for your support, it means so much and is VERY appreciated

[healthygenes]

I totally agree with everyone should complain,about the digraceful places allocated for pip assesments,it's just that when your fighting for your rights(which we shouldn't have too) I think sometimes you haven't got any fight left in you,at one time I would take anyone on Council, Goverment officiall once I knew I was right I didn't care,now I couldn't care less,I'm retired now so maybe it's age, but I really and truley think whats going on is absolutely soul destroying,a man who has served in our forces,fought for our country, humiliated by some ---------i hang my head in shame for this goverment,how dare they.

[Lima6MCT]

I think anyone finding the Assessment Centre they are sent to isn't suitable should email or write to their MP (with a copy to Lady Tanni Grey-Thomson [e-mail] ) about it with details of what problems were encountered. Hopefully if enough people get in touch they can't plead ignorance of the problems being encountered.

Tanni Grey-Thomson has been collecting information about the DLA/PIP benefit changeovers. She is especially encouraging anyone who had HRM DLA but has been downgraded for PIP (Including those who have lost Motability cars/equipment) to get in touch.

[jt68 in reply to Lima6MCT]

Lima, I will be writing to my MP about my experience and it's also been suggested that I write an additional statement about my experience and the ridiculous distance and lack of resting places in between to the DWP, I will certainly inform Lady Tanny about it too. I (and many others) just want to be treated with respect, and not thought of as a scrounger or burden on the state, it is so ridiculous that we are made to feel this way just because of poor health or mental health issues. I will keep you informed of the outcome, but even if I am successful, I will still be kicking up a fuss with the necessary authorities, so that other people don't have to suffer a similar experience in the future. Thanks again for your kind words and support.

[jt68]

I really do understand that some people "play" the system, believe me, I have met a few in my time, - there are people living around the corner from me who dont seem to suffer from health issues, physical or mental, and have never worked a day in their lives, yet they always seem to be in the best houses and driving the nicest cars. BUT no matter how many tv programmes you see on scroungers bleeding the system and how much you read in the papers about fraud, the vast majority (98 %) of people that go through this process to claim PIP are genuine. I am quite lucky in that not only do I have immense support from my loving extended family, I am also quite well educated (masters degree) and i know that my experience is far from uncommon and how the welfare system works for some but not for others and how DLA or PIP can mean the difference between a decent life and suffering in hell. How must those people who have little support or do not realise their rights suffer at these interviews, it is so absolutely soul destroying ! I would perhaps be more understanding in changes to the criteria of being able to claim, if the well-bodied, extremely rich in our society weren't enjoying tax cuts and other life bonuses whilst the education system, the nhs and disabled people, who need constant support are being stripped of their dignity by having to go through such assesments to support their claims for merely suffering from ill health. Most of the time (apart from the fibro fog and chronic pain disorder) I can hold my own, but I simply cant function when in extreme pain. I really feel sorry for those that are suffering from severe pain issues, depression, anxiety or other mental health issues, I really don't know how they cope with the PIP process. This is day three of pure agony which I have suffered just because basically I had no other choice but to walk slowly in intense pain to the exam room. I am now so hopping bloody mad about it, that I will not let my experience go to waste. I will make those in power listen if it's the last thing I do. THANKS to all for your support. Xx

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[Lizkel31]

same here had my assessment last friday cancelled the first appointment would of took me 1 hr 30 mins to get to the place getting a bus the train and 40 min walk the second appointment was alot closer to home and the girl waS REALLY UNDERSTANDING Iwas in the room for 45 mins and i CRIED RIGHT THROUGH IT I HAD A ANXIETY ATTACK ,ive been like this for 27 years now only got told what i had 2 yrs ago it took me 10 yrs putting claim after claim in for dla kept getting turned down finally won it 3 yrs ago middle care and low mobility now my fibro is in over drive aswell havent slept for 2 nights cant eat and ive got 4-6 weeks for the out come fingers crossed. can i just ask while i remember was anybody asked if they had ever attempted or thought of suicide i have tried to take my life about 20 yrs ago and think about it alot but my grandkids change my mind but its like she knew

[jt68]

Lizkel31, Sorry to hear that you have been suffering for so long and about your experience, it is truly heartbreaking. I too have contemplated suicide in the past, sometimes after days of hardly any sleep and so much debilitating pain. I do ask myself, what is the point of being a burden to my family ? I was asked at my assessment about this -- had I ever had such thoughts and I replied that I had, I was then asked had I told my GP about this. I replied no, then was asked why I hadn't asked for help. I told my assessor that I take so much medication for my ailments that I rattle when I walk and had previously been taking anti-depressants for panic attacks -- its in my medical records if he cared to read them and on my PIP form I had mentioned it, he did press me with more questions about this and I too broke down, felt almost bullied, though he was perfectly pleasant, for people who suffer with chronic pain disorder like Fibro everyday, they dont need grilling to the point of breaking down in front of strangers, its demoralising -( for the record, although the anti-depressants did deal with my anxiety and panic attacks; I was what can only be described as a Zombie on these, I didnt laugh or cry and felt stripped of my emotions, felt nothing but numbness, my personality disappeared) but I have chosen to deal with the issue with the help of meditation and self-help literature and by writing down my thoughts and feelings in a journal. The journal did, surprisingly, help immensely, whenever I felt very low, writing down my feelings and having an uncontrolled weep now and then really does help. (Do keep it somewhere where others dont have access as it can be upsetting for your love ones to read) When I read back my thoughts on better days, I could kick myself for feeling that way, but as I said previously when you have to deal with no sleep and constant pain it is inevitable that you feel so down from time to time. I am so lucky in that I do have a fabulous husband who works hard, cares for me daily and is so patient with my moods and depression, along with two adult children who also have the patience of saints and help me out so much around the house.

Sincerely wish you all the best with your claim and for your future health, DO try to be positive, and if your claim isnt successful then do try again and appeal, dont be put off with the demoralising experience of your assessment, that's what this particular government wants us to do, - give up, SO FIGHT FIGHT FIGHT - that's what I intend to do,

All The Best

JT