PIP Reconsideration: I am so angry at... - Fibromyalgia Acti...

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PIP Reconsideration

catherine19611 profile image
49 Replies

I am so angry at the moment, i put an application in for change of circumstances at the beginning of the year because i had got so much worse, i filled in the form and had the telephone assessment, they then sent me a letter stating that amongst other things, that 'ON THE BASIS OF PROBABILITY' i was lying, ON THE BASIS OF PROBABILITY, not on the evidence, i was not lying.

If a prosecuting solicitor went into court and said to the judge that on the basis of probability the accused had killed 25 people he would be laughed out of court.

i asked for copies of everything they used for the assessment under the right to information act, it was farsical

they claim that my circumstances HAVE NOT changed since my last assessment, that was in 2018, there was that little thing, you may remember it, called covid which started in 2020, and the vaccine which we were told was 'safe' in 2021, i had the covid vaccine in 2021, and it sent my chronic fatigue off the scale, it left me only being able to do approximately 20 minutes a day of normal daily activity, and i cant do that all in one go.it is now 2023 and it is no better.

i also had a full spine mri in 2019, which showed up things which i didnt know about in 2018, this has also been ignored. they claim i can walk 250 yards, i am lucky if i can walk 12 yards before the pain is so bad i need to sit or lie down. the MRI confirms that the pain will be in my hip legs and ankle. this has also been ignored

they also claimed that i didnt get out of breath because they could hear this over the phone, sitting talking to somebody on the phone is hardly the same things as being out of breath walking, bending or even just moving around

they claim that because my walking sticks were given to me by a physio who my gp at the time had sent me to due to my fibro symptoms, which was immediately before he then sent me to a rumatologist who confirmed the fibro and chronic fatigue diagnosis. So, according to the assessor these are NOT necessary aids as they were not PRESCRIBED by my GP.

they claim that because i had the grab rails put in the shower myself, because i slip and trip, that these are NOT necessary aids as they were NOT prescribed by my GP.

the one that i still havent worked out was, that i can 'drive a car so i am capable of chopping food up and preparing a meal'. all of the nerves in my neck are completely mangled, the mri report shows this and the report states that i could have problems with my hands. does anybody know how the force you need to put on your hands to chop say carrots, is anything like holding a steering wheel. the furthest i ever drive is 1/4 of a mile. and back, and that is my day done, the chronic fatigue prevents me from doing anything else all day after that. i learned to drive after i damaged my back and i am safe to do this as sitting in a car is not the same as walking with the effects of gravity on my spine.

these are just some of their justifications for refusing the application,there are many more, but we would be here all day. my GP said that they DONT prescribe walking sticks or grab rails, and that i should put a formal complaint about this assessment in. i did that in June of this year, i sent it special delivery signed for, good job i did, i received a phone call from the dwp the day before yesterday, stating, ' we have lost your letter, we know you sent it because it was signed for, can you send us another copy', doesnt say much about the DATA PROTECTION ACT does it. he wanted me to go through it with him on the phone, and was a bit shocked when i told him it was 7 pages long and that it also contained the information on where and who i made a formal complaint to.

it has taken from june until the 5 of september to ask for another copy!!!!!!!!!!!

sorry for the rant, but i am absolutely livid about this, if i had taken this long to return forms to them they wouldnt stand for it. the first form they sent me didnt arrive until over a week after the deadline to fill it in and return it to then, the second one arrived 3 days before the deadline, but we are just supposed to put up with it

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catherine19611
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49 Replies
catherine19611 profile image
catherine19611

thank you, i dont drive very much at all, i have 1 or 2 good days a week if i am lucky and the bad days can go on for 2 or 3 weeks without a good day, and a good day is 20 minutes of normal daily activity. you can tell how much i drive, my car is 16 years old and i have had it for 14 of those, it hasnt yet even got to 60,000 miles.

i live alone and if i didnt go out at all i would not see anybody.

they didnt ask me anything about chopping and driving, they just wrote it in the assessment, i frequently loose my grip on the knife when i am chopping things as the pain shoots down my arm and into my hands, and the knife slips out of my hand

catherine19611 profile image
catherine19611

thank you i will, i told the man who phoned me the other day that my gp had told me to make a complaint and he gave me an email address, he said that was the only way you could make a complaint, to correspondence@dwp.gov.uk, i am going to make a complaint to this anyway, but will also go to tribunal if i have too, god knows how i will get there and back and get through it, but i will have to, no matter how it makes me feel afterwards

Endolemon profile image
Endolemon in reply to catherine19611

You can attend a tribunal hearing by video call

catherine19611 profile image
catherine19611 in reply to Endolemon

thank you, i didnt know that. i have never done a video call and dont know how to, but i will certainly learn if i have to take this to the tribunal

Erica50 profile image
Erica50 in reply to Endolemon

Ask for a home visit now and have a friend in the house with you or a family member

Hazel_Angelstar profile image
Hazel_AngelstarAdministratorFMA UK Staff

Please contact our benefits team - aids do not require to be provided by a health professional to be accepted

CM1EDSUK profile image
CM1EDSUK

Hoping this link works, also some info here about 'aids' healthunlocked.com/fibromya...

22pagets22 profile image
22pagets22

I so feel for you this is normal and its looking to get worse I've sent paperwork signed for 3 times in past and lost atmo waiting for review with changes waited nearly year was sent extension of award because not had review assessment but now had text saying they looking at it expecting he'll again and at a time my mother been told terminal so dealing with so much atmo hope you fight then at every level its criminal how these assessment lie

catherine19611 profile image
catherine19611 in reply to 22pagets22

thank you sweetheart, and i am sorry for what you are going through, i had the same thing with my sister in 2002, her doctor wouldnt listen to her for over 6 months, her husband had to rush her into hospital, they ran tests and told her she had weeks left. she left 3 children the youngest only 8. so i know what you are going through, stay strong.

i have been being harassed for 6 1/2 years by a gang of neighbours whilst i am inside my house, trying to force me to move, people think it is kids doing this, but when i tell them that they are between 55 and 75 they cant believe it, they have upped their harassment recently so they have made me so angry that i am ready for the dwp now

Ebonybaby profile image
Ebonybaby

I understand your pain in my assessment they told me I was calm I was in fact tapping my chest and wringing my hands with anxiety twice my husband asked was I ok ? I honestly believe it's about time fibromyalgia was taken seriously and classed as the disability it is, my life in constant pain is no longer my own 😞 good luck 🤞

catherine19611 profile image
catherine19611 in reply to Ebonybaby

thank you, my GP referred me to the Leicestershire chronic fatigue service, they assessed me over the phone, but couldnt help me because they said that i had already tried everything they could suggest and knew how to manage it, but the guy who assessed me also had chronic fatigue and knew exactly what i was talking about, it was so refreshing to talk to somebody who was assessing me over the phone who actually knew what i was talking about, he said that they cannot assess how fatigued you are over the phone because with chronic fatigue it may not show for several hours or even days after the even, and that was from an assessor for chronic fatigue service. i told him my GP had said to make a formal complaint, and he agreed, so i put what he had said, his name and the name of where he was from in the letter for the reconsideration as well

Cat00 profile image
Cat00

I had to go to Tribunal because a GP lied about me. Fortunately for me it was easy to prove she was lying because she said I couldn't have chronic migraines bc I "didn't even take any analgesics" I had 8 years of neurologists and meds I'd been on that I could easily show. I've been told by many doctors there's nothing they can do, so I don't go to the GP, she seemed think because she never saw me I couldn't be ill. But why would I go if they can't do anything, I have social phobia going to doctors is hard enough when there is something they can do.

Telling you they think you are probably lying is so deeply insulting. This is partly why I don't claim PIP is just too soul destroying. I got my claim accepted at tribunal but I just couldn't go through again. Well done for fighting, they should be made to justify their claims, they should be done for defamation.

catherine19611 profile image
catherine19611 in reply to Cat00

thank you sweetheart, i know what you mean about doctors, i havent seen mine since before covid, they still do phone appointments.

when i had the mri done in 2019 my gp said we will try physio first, (2 bulging disks, 3 vertibra pressing down on disks, all the nerves in my neck are completely mangled, etc) and we will try physio. i had to phone for an appointment with the physio, she snapped at me, 'what the hell does he think i am going to do about it, i'll send you some leaflets with exercises to do', she then slammed the phone down, the exercises were for arthritis and involved pressing your lower back into the floor, i cant get onto the floor unless i fall, and pressing my lower back into the floor is where the bulging disks are. if i had managed to get onto the floor i wouldnt have been able to get up. i live alone, correction, the cats let me live with them!!

i phoned the gp to ask for another appointment, the receptionist wanted to know why, i told her about the mri report, and she snapped, you cant have an appointment you have been told what the diagnosis is there is nothing more that they can tell you

my gp doesnt know me, i just get on with it

catherine19611 profile image
catherine19611 in reply to Cat00

thank you, they also claimed that my condition cant be that bad as i am 'only on basic medication', i am on the medication that i can tolerate, i have bad reactions to so many medications and cant take them. i had a lignocaine infusion at the pain management clinic which left me unable to even sit up for weeks, i have to be so careful

Cat00 profile image
Cat00 in reply to catherine19611

Yup I don't take anything for fibro, nothing works on me, when morphine had no effect I stopped searching for any kind of relief from medication.What's also particularly annoying is that when the question was asked, Are fibromyalgia patients just hypochondriacs? One of the reasons they were considered NOT to be was because after diagnosis they sought out medical attention LESS! We stop going to GP's bc quite frankly they treat us badly and often can't help. So if anything GP's not knowing us support our diagnosis of fibromyalgia rather than contradict it.....

Cat00 profile image
Cat00 in reply to catherine19611

I had a substance not unlike lidocaine injected all down my spine, sadly it didn't work at all. After at least 20 years of pain finally got a MRI of my neck, they said I had severe muscle spasm all down one side most likely bc of migraine pain. I found out a couple of years later they can't see muscles on the type of MRI I had so I presume they were just guessing !?

Bertiemum profile image
Bertiemum

PLEASE do not give up. I know how wearing it is, but you are entitled to this help. I have experience of this, although in a different situation. I have been arguing with Adult Social Care over my husband’s funding for his dementia care. I asked a very pointed question of them 16 months ago, and I have still not received a response. I believe they just try to wear you down in the hope that you will go away!

I know how stressful it is. In Adult Social Care the County Council give you access to an advocate, who is totally independent and can help you through the process. It may be worth finding out if this service is available in your case. Can your GP not write a letter of support for you?

Good luck! ❤️

Nuttyshirlz profile image
Nuttyshirlz

Good luck if they do ask you for video call. I got letter saying I was getting one two weeks ago for my review to work assignment. You have to log into this room 15 mins before you sit there waiting for them to come on line saying you will receive a call later. I sat 4hrs waiting for the call then all I got asked was my name how long I’d been on sickness benefits and ok thank you. So I stressed out for nothing

catherine19611 profile image
catherine19611 in reply to Nuttyshirlz

i had to phone them the other day with the tracking number for the second copy of the letter i sent them, i was on hold for 1 hour and 42 minutes before they answered the phone. a complete waste of time as the letter was delivered and signed for the day after i posted it, but they insist that i had to phone the tracking number through. if it was the other way round they would play merry hell that we were wasting their time

Nuttyshirlz profile image
Nuttyshirlz in reply to catherine19611

I’ve just moved home and I put message on uc to let them know I was told I had to call pip etc too I sat for nearly 2hrs trying to ring them all to inform them and when I got through she told me she already knew but i still had to tell them. Iol couldn’t make it up

catherine19611 profile image
catherine19611 in reply to Nuttyshirlz

its ridiculous isnt it, they told me they wanted the tracking number when i posted it, yet when i phoned to give it to them the man said, we dont need that we will deal with it when we get the letter, i told him i had been asked to ring and give it to them and his response was, i'll just look on the file, then he said we havent received it yet, well if they had received it i would have been amazed, it had only been posted 3 hours before. it makes you wonder if the people doing these jobs should really be doing something else

as for the form they send out to fill in, if i had written nothing at all on it and sent it back it would have had exactly the same outcome

Nuttyshirlz profile image
Nuttyshirlz in reply to catherine19611

Yes I always photo copy mine before I send it tracked just incase they say we didn’t receive it. I normally get ca to do mine but had to do myself last time because they were shut. I’ve got files of them to look back on. File with their letters and one with my replies. You shouldn’t have this much hassle to get what you’ve worked for

E8L8dh profile image
E8L8dh

fightback4justice.co.uk/

Hi Catherine,

I know that this company charge for some of their services but I would suggest you contact them. My niece used them to claim P.I.P for both her and her sons and was awarded the full amount for the 3 of them. I hope this helps. I don’t understand the driving thing being a problem. Why would car dealers offer mobility cars if disabled people aren’t allowed to drive. Good Luck

catherine19611 profile image
catherine19611 in reply to E8L8dh

thank you, i have been given some wonderful advice on here and i am really greatfull for people to take the time to do it

Whipz profile image
Whipz

Hi, I know what you’re going through, I had exactly the same, you need contact your local m.p I did this and he came to my house, he listened and was horrified at the whole debacle. He contacted them and surprise surprise I they did a complete 360 . This is exactly what your m.p is there for. Good luck, hope you get this resolved.

Farmerboy profile image
Farmerboy

hello having a reconsideration conversation over the phone is a foolish thing to do or accept if it’s offered. Always request a copy of your assessment report and by having it you can see what your award may should be but you can’t do a mandatory reconsideration until you have received the official award notification letter. But by having the report you can compile you MR by giving additional information and evidence to support your original claim. I did a change of circumstances and because I use mobility scooters and drive an automatic car my original award remained at 8 points having read my report the accesor assumed or presumed that I was capable to preform the descriptors. I had over 6 weeks to prepare my MR and on receiving the official award notification letter I phoned the DWP requesting a mandatory reconsideration at first I was offered a telephone consultation I declined and informed the person my MR will be posted that afternoon. My MR consisted of 10 A4 pages printed going through each descriptor of why I was unable to preform them quoting from my original application form stating what the score was awarded and what it should had minimum and maximum given my conditions. The new award was received with 3 weeks going from 8 points to 14. It was the information given I the original application and the MR no mention or reference of existing medical conditions .

catherine19611 profile image
catherine19611 in reply to Farmerboy

they totally ignored everything i had put on the form, they claimed that they had taken all medical information into account since my last assessment, which was in 2018, and that my condition hadnt changed, but it has

i asked for all the information they claimed they used for their decision including the assessment and medical information and a copy of my form that i had filled in (although i did already have a copy of that) under the right to information act, which they sent and i went through line by line, the letter i sent to them was 7 A4 pages long, i did wonder if when they saw the letter they couldnt be bothered to go through it and thought that phoning me claiming that it had 'got lost' and try to get me to do it over the phone was a ruse.

the letter also started with asking for the information of where i should make a formal complaint to, by immediate return.

catherine19611 profile image
catherine19611 in reply to Farmerboy

the man who phoned me did appear a bit stunned when i told him that it was 7 A4 pages long and that i would print out another copy and post that to them that day and send it to them by tracked post. it was as if he suddenly realised that i wasnt going to be fobbed off

Tim61 profile image
Tim61

Hi Catherine, to say it’s appalling the way you’ve been treated seems an understatement. There is an excellent online support service called Benefits and Work, I’m sure they will beable to help you; they also have excellent resources, so you can get advice , and see how people have tackled similar cases as yourself in the past .

Farmerboy profile image
Farmerboy in reply to Tim61

The resources are for members only the yearly subscription is well worth the expense. You can download the relevant information as pdf files to store on your device I have nearly 200 pdfs from many organisations for reference.

Tim61 profile image
Tim61 in reply to Farmerboy

Yes, Farmerboy I already knew this being a member , I just thought it would be a good reference point for Catherine 19611, as the subscription isn’t that great and well worth it ;yes , thank-you for clarifying those points, I was in rather a hurry when I wrote the post .

Princess61 profile image
Princess61

I've just put my first application in for pip., after reading about the way you get treated, it's made my anxiety worse about applying now. I'm dreading the assessment even though I should be entitled to it.

Brigga profile image
Brigga in reply to Princess61

I feel the same. I guess that’s what they want. I just put in my reconsideration request after getting zero points. I’m kind of sorry I started the whole process. I’ve spent so much time on their stupid forms, went through a horrible assessment online and have virtually been accused of lying. The way this country treats disabled people is disgusting. I’ve found the support on this forum really helpful. Just know we’re all on your side x

MaggieSylvie profile image
MaggieSylvie in reply to Princess61

Do make sure you complete the form the right way - base it all on your worst days and make sure you include all the support you get, including holding on to items of furniture and whether you have help in the form of mechanical items, for instance for getting in and out of the bath.

Princess61 profile image
Princess61 in reply to MaggieSylvie

Thanks Maggiesylvie, I've sent it off last week, I did put my worse days, holding on to sink, table ext when I have to stand. I hold on to window sill to help me get into bath, but my husband helps me down into the water. I currently work, have had to reduce my hours, so did get a letter from work to clarify my fibromyalgia and having lighter duties to. I'll just have to wait and see.x

MaggieSylvie profile image
MaggieSylvie in reply to Princess61

It sounds as if you've got it right. If they don't give it to you, appeal. Good luck. We can all do without hassles in life.

catherine19611 profile image
catherine19611 in reply to MaggieSylvie

i did complete the form based on the worst days, i may have 1 good day a week, which s being able to do about 20 minutes a day of normal daily activity, and not all in one go, if i am really lucky i may get 2 good days, but more often than not i get bad day after bad day and this can go on for weeks, on these days all i can do is sit or quite often i have to lie down all day because i dont have the energy to do anything at all.

MaggieSylvie profile image
MaggieSylvie in reply to catherine19611

Hi Catherine, 20 minutes a day of normal activity and not all in one go. That's the way it goes for us. A normal day can suddenly become a bad day after 20 minutes of some activities. I am lucky that most days I can manage a few 20 minutes with breaks in between. People don't get how a few simple household tasks can appear to take all day to complete. I don't think many of the the pen pushers of this life are able to put themselves in our shoes. What can we do except exaggerate? It's all so draining.

catherine19611 profile image
catherine19611 in reply to MaggieSylvie

it can take me 3 days just to hoover the living room, and it is only a small house

MaggieSylvie profile image
MaggieSylvie in reply to catherine19611

Yes because in a small house we have to shift the furniture. Even with a Roomba, you still need to let it get behind the big armchair that you need for resting in. It's great to have laminate in a small house but it still needs cleaning from time to time (I do it mostly once a week) apart from vacuuming it. I just am so thankful for the Roomba, for the washing machine and lately, the dryer, not to mention the air conditioning. But everything we have to help us get through the chores needs to be maintained, and sometimes the maintenance causes us more pain that doing the chores!

Brigga profile image
Brigga

As Whipz said above ask your MP for support. I worked at the DWP many many years ago (hasn’t helped me with my PIP claim). Back then any letters from MPs were bumped to top priority. It may still be the same.

NessH profile image
NessH

It's absolutely disgusting that they have treat you like this, im due my pip review shortly and I'm dreading it. All I can say is that you need to put in for mandatory reconsideration and you will most likely win that one, failing that you can appeal. It is so sad that we are treated this way and the treatment of people like us does not get any better. I wish you loads of luck x

catherine19611 profile image
catherine19611 in reply to NessH

thank you

MaggieSylvie profile image
MaggieSylvie

I could have written this myself! My attendance allowance was decreased this year on the basis that I do not need support to get up in the night! Just that. Yes, chopping carrots - standing it hurts the lower back; sitting, it hurts the neck/shoulders area. They haven't discriminated against having rails for the bath that were put there for my partner. Thankfully. My partner says the perching stool was provided for him, but I use it so much I don't remember that at all. I go to the chiropractor regularly for the pain from compression fractures, but because the pain from these is less than it was I have the reduced rate.

What help can possibly be provided for chopping carrots in a seated position? If no help is possible, how can we claim we need help? Yes. driving the car is one of the easiest things to do, but even that has its limits and that's another conversation! I think it's a disgrace that they accuse you of lying. Do appeal.

How far you can walk? Well, how often do you walk without carrying shopping or work related items? They never ask that. I bet it's not half as far as you could walk with just a small handbag. And what if you're with your partner and he walks so slowly that it gives you pain to keep back with him, especially if he needs guiding (he's blind) and he's leaning on your shoulder? This is normal life - for me but how can you make something like that fit their criteria? They'd say "Get someone else to do it" - like who? I don't think they believe in childlessness and lack of other family members. Nothing new to add to the AA, and how could money help? It wouldn't be enough to pay someone else to come and do the painful things for you. So yes, the compression fracture pain has lessened in general but that doesn't mean I can live a flexible, safe and painfree life. I suspect the same for you.

catherine19611 profile image
catherine19611 in reply to MaggieSylvie

i agree totally, i sometimes think that i wish these people who make these decisions could have what we have, just for one week, and then see what their decision would be

Fibro-Nanna2020 profile image
Fibro-Nanna2020

Appeal it!

Midori profile image
Midori

They certainly made a lot of assumptions about you. all of which were wrong. Fight them. Not sure if you'd have to go though Mandatory Reconsideration again, but To accuse you of lying! Wow!

Cheers, Midori

catherine19611 profile image
catherine19611 in reply to Midori

thank you, i am going to

ChampagneDiamonds profile image
ChampagneDiamonds

Hi Catherine, DITTO re your pip,Sorry you're another genuine person that's being abused by the DWP!!!!My partner and I ( his claim) and he works with NHS,have just done another tribunal!!!!on2tiers!!!!! SAME situation as you,DON'T give up hope,fight them all the way,we did and got an unequivocally apology from them!!!!All benefits reinstated for the past 2years!!!!!!The judge was aghast at the DWP!!!!

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