Pip award 😡😡😡

[tubbytomo]

So I get my pip award back and it’s the same rate as they said I’ve got no worse even though my wrist is really bad and need to see Surgeon For left foot is so bad I can barely walk on it and need op ... how do you cope with that ... feel let down snd angry any tips out there guys. ???

[Bootoo]

Appeal straight away, get your report from the DWP and see where they have marked you down... It makes me so angry when I read posts like yours, we have to fight nearly every time for what should be entitled to. I know on my pip application I told them it was an incurable disease and even the most rookie assessor should know that (basically calling them stupid)

The level of damage you have is never going to get better, only worse as the years go on and they should take it into consideration. Get family members to write a letter if that is possible as to how much worse you are getting, send every bit of paperwork from doctors / consultants even if they say you haven't to, bombard them with all you have.

[tubbytomo in reply to Bootoo]

Yeh I am thinking of calling my doctor as pip have said I can’t move to a higher level to receive more money as my condition hadn’t changed since the last assessment 3 yrs ago which it has as I now have gone past referral stage snd now at I need operation stage but due to covid that could now be a minimum of a yr on waiting list they said my mobility was standard as I could stand snd move over 20 mtrs they said my RA consultant mentioned I worked PT. yeh I did over a yr ago when I did light cleaning for a elderly gentleman who died a yr ago so I told him I wouldn’t be able to do that after lock down ... just feel confused by it all and really don’t think I will get anywhere as they stated my medication hasn’t changed ... well I take all RA meds and I inject Benaparli bio logic top dose every wk ... I mean what more can they give me and I’m still getting deformed joints ... I would like them to live a few days in my body .., just feel hopeless 😓😓😓

[Madmusiclover in reply to tubbytomo]

Totally understand. Give it a day or two whilst you adjust to the disappointment then follow bootoo’s advice. The system is designed to beat you and demoralise you. It’s a disgrace. Hope you find energy to fight it.

[tubbytomo in reply to Madmusiclover]

Yes decided to wait til Monday to call them as I didn’t want to just rant ..... have emailed my doctor to ask for a face to face assessment as I can no longer weight bear on my left foot now ...so I need to organise aids to help etc and to update my condition... which is the problem as I haven’t actually had a face to for a yr nearly and my condition has changed lots .. so let the battle commence I suppose 👍

[MJSlide1958 in reply to Bootoo]

HiDo you know whether whilst doing a part-time job and suffering from RA , is it still ok to put in for PIP? In other words can anyone with RA, incurable and on meds, able to work some hours, is it ok to apply for PIP or is it only for people with disability and cannot work?

[Hidden in reply to MJSlide1958]

Yes it’s not means tested. You can work full time.

[MJSlide1958 in reply to Hidden]

Thanks very much J1707

[KittyJ in reply to MJSlide1958]

Here you go MJ

gov.uk/pip

[MJSlide1958 in reply to KittyJ]

Thanks very much link KittyJ

[bubblyalex]

Appeal straight away imo. 🤞🏻

[tubbytomo in reply to bubblyalex]

Well they are paying me but lowest level so I need to dispute as my condition has changed but it’s trying to explain and prove it to them ...

[bubblyalex in reply to tubbytomo]

I am 49. So many of people seem to develop this disease around now I think ... the main thing is to get all the treatments and ops and things and help you do need. I am so sorry it is such a battle and that they can’t change your meds. Was the neuropathy caused by the meds or perhaps the disease taking its toll while waiting for meds to start working.

PIP is worth fighting for and a lot do need to put in an appeal. It sounds almost normal. I was lucky not to have to but when they did my assessment I had to have 3 times a day care (hard to ignore needing that level of help) ... I was in quite a sorry state. You need to show them anything and everything you have. Letters, xrays, prescriptions from gp and your rheumy, photos of any aides you have to help you do anything whether OT supplied or self bought. You have to imagine what you can’t do if you have no tools or people to help you. You have to compare it to how you were before all of this started. And always talk about at your worst rather than what you can manage. Can you wash yourself fully like you did when you were 30 ... is it hard or impossible to reach anywhere... if it is... then it’s a no you can’t wash without help. If you are down and depressed it is important to show them... to tell them ... if it is how you feel don’t try not to cry. The assessment isn’t a time to be brave and soldier on. Big hugs to you. Another battle annoyingly ... and it’s hard work putting everything together... one worth going for. Do you have an OT I put my OT as a person to talk to on my form with my GP and my Rheumy🍀🍀🍀

[Hidden]

This is pretty standard in a lot of areas. When I applied for pip I got zero points for everything. Read the report and picked it apart paragraph by paragraph. Got a letter from my Gp, Rheumy nurse, physio, podiatrist, chiropractor. I also got a acute list of medication from my gp to show painkillers and steroids that had been prescribed also sent a copy of every letter from any consultation.

In clued in your statement that your in constant pain and that every day is effected by disease eg walking include struggling on stairs or wearing foot wear, dressy. Holding a cup etc.

After I went to mandatory I got standard pip for both.. good luck.

[tubbytomo]

Thanks for that I will try ... no they haven’t seen xrays so will send them I can no longer work now on UC and have fit note from doc for 3 months perhaps I should send them that ax well ?? Problem is I’m too young for this amount of damage and too young for ops as I’m 56 and they say it will come back but when I first had pip at standard rate I wasn’t even being referred for surgery but now I am as I have very aggressive RA so I need to word it right or they won’t even bother reading it ... they can’t change my meds as it has taken years to find one that I don’t react to as the last lot gave me neuropathy which I have got for life now .. it’s a battle I don’t want but feel I need to fight even though I get money every month I feel it’s not on the rate I should be ... depressed over it all 😓😓😓😓

[Madmusiclover in reply to tubbytomo]

They will read it. Send everything you have. So sorry you are so distressed.

[Esmereld]

I’m so sorry to see you being so upset. I really have no idea about PIP but your X-ray looks just like mine did. I had the “bunion”op and never looked back. It’s life changing. You’ve obviously started the process by getting an X-ray. Please heed the advice they give you about recovering. I’ve seen so many people complaining about pain afterwards but when questioned they admit to being up and about way too quickly. I did as I was told and have a lovely straight, pain free foot. I had pain for 36 hours and discomfort for the next 36 hours, then no pain. All controlled with paracetamol and brufen so really felt very little. There was no suffering. I stocked up with microwave meals. They’re not so bad. Made flasks of tea. Was offered a care package. Don’t listen to horror stories. If I had to do it again, I wouldn’t hesitate. Good luck in all your endeavours.

[tubbytomo in reply to Esmereld]

Unfortunately my op is to straighten toe and put in pin then the 3 toes that are no longer attached need to be cut and replaced back in bone socket as I actually walk on the bones that attaché to toes so I have 3 pebble like lumps in ball of foot that has pushed it up hence why I now have to walk on side of foot and on my heel with orthotics only no bare feet for me it’s knocked my knee out and my hip so pain there now ...I have to have 12 was min no weight baring 6 was in boot still no weight then further 6 was with gutter crutches then half weight bearing then after 9 months pyshio to strength build ... but here is the problem firstly I’m too young and second as I’m too young with a aggressive form of RA it could all grow back in a year or two so then I have to have it done again hence why they want to delay ... these people that read forms have no idea what it’s like to try and walk around with 3 pebbles in bottom is trainer as that is what it feels like ... think I need to go see doctor and get a proper letter as I can never get hold of my RA Consultant ... I know I’m moaning but they make you feel desperate x

[bubblyalex in reply to tubbytomo]

😥 How are you too young... it’s just too much surely to make you wait. Ok it may happen again... does that mean it’s ok for you to be kept like this ... sorry maybe I am missing something here and I don’t mean to stir the pot I just feel cross for you and the pain you are suffering. Maybe your rheumy isn’t the one for you?

Is this how it is for anyone that needs this ... a question I ask of everyone.

[KittyJ in reply to bubblyalex]

Yes ba, mine are similar and I was told they won’t do anything until I basically can’t walk or weight bear. Sent to orthotics and I shave the calluses that have formed on the bottom of my feet at the base of my toes. I had a new referral as lockdown started but who knows when that will be 🤷🏻‍♀️😞

[bubblyalex in reply to KittyJ]

It cruel it really is. How can they take this like with some. 😥

[tubbytomo in reply to bubblyalex]

The op I need is what they give 70 yr olds and if they give me the op I actually need and it grows back in yr or two they can’t do it again so they want to give me op that will tide me over to I can get the one I need I know it’s mad sort of know what they mean though ... think I’m in for a few yrs of ops etc ... it’s a shit disease and we don’t get the help we need like being type 1or 2 diabetes... it’s wrong and frustrating having to fight for everything.🤷‍♀️🤷‍♀️

[Julies49]

Appeal Appeal Appeal is what I was told

[tubbytomo in reply to Julies49]

Thx you when I have gathered my strength I shall call doctor and try for a assessment as haven’t seen RA consultant in a yr only phone calls due to covid

[nomoreheels]

Understandably this has upset you, it would anyone. Can I ask firstly, as this was your PIP review did you include with your paperwork, when you returned the form, any documentation they haven’t seen before, that wasn't included in your previous PIP application? What I mean is supporting evidence from your Rheumy, GP, Occupational Therapy... any of the medical professionals you see regarding what you included in your forms? If not you may still have enough time if you ask for urgent responses for those you need them from, or if you can gather it all from your GP. You are entitled to photocopies of all correspondence from your Surgery, reports etc free of charge, first time only.

I think it's within 30 days you have to apply for Mandatory Reconsideration so you need to act quickly. You can ask for an extension of 2 weeks if you have a delay in collating all relevant supporting information.

Meantime have you requested a copy of the assessors report? If not please do phone today if possible, the earlier you have that the sooner you can form your case. You can then list where the assessor has misunderstood or misinterpreted anything you've discussed which could make a difference in points. I'm thinking particularly of the 20m rule &/or any aids you use when walking. Many people have fallen foul of this part of the award, this is because it's flawed. NRAS & other charities/Rheumatolgy related have campaigned against the current descriptor. Really you need as much evidence of your foot problems (& other joints which limit you) as you can get your hands on, this would include copies of the above xrays, & the Radiologist's report, you get the idea. Unfortunately if the assessor has no clue about RD & just has the client's word they don't always understand how such joint issues as you have can limit your walking in a safe manner, I can't quite bring to mind the actual descriptor but the point I'm trying to make is they need medical evidence as looking at you may be, is likely to be, not the full story.

Please do request MR. If that fails tribunal is the next & final step. Keep us updated & we'll help further if we can, we're happy to give any experiences we have.

I should have mentioned that my first PIP award was lower than my review, I had more supporting evidence for my second assessment 3 years down the line. This was because at the time of my initial PIP my Rheumy insisted because feet aren’t included in the DAS 28 examination they didn't exist. When she eventually examined them, well let's say she was very apologetic & started referring me on.

All the very best.

[tubbytomo in reply to nomoreheels]

Sorry forgot to ask isn’t the accessors report when they lust everything and reply with there decisions!???

[tubbytomo]

Thank you for this information unfortunately I didn’t send my feet xrays in I stated I could if needed as letter from surgeon had stated that my toes not attached etc but problem is they haven’t seen my feet snd hands in the flesh so to spk I have spoke to my RA secretary and she had stated I’m not due a phone app to May but he recommended I see hand specialist in May to look into a operation so they won’t use that ... she recommended I talk to my gp or try and see him cause if I can’t show doctor how it’s progressed then I’m fighting a losing battle and I know people will argue and say I’m moaning because I’mGetting a monthly payment just at the lowest rate but I really can’t walk around with my foot the way it is .. but they stated I have a bad right hand but I have a ok good left hand so I suppose they feel like that with my foot as well ... I can hop around I suppose ... I will call my gp and podiatrist and see if I can get letters and I will call pip snd inform them I disagree with decision.... thank you I will keep you posted ... the letter was very uncaring and very abrupt no compassion there .!!

[nomoreheels in reply to tubbytomo]

They can be very abrupt in the wording which is uncaring. You need as much supporting info as you can get so, if it was me in the same position, I would include copies of the xrays & the letter from the surgeon explaining the X-ray, those & anything your GP has that is dated after your last PIP assessment. As I say if you've not requested copies of your medical file before the photocopies should be free of charge. I did this when I sent my review form back, it was nearly an inch thick. I’m convinced it helped in being understood how RD affects me because I had an increase in award. I received no Mobility the first time, I was a couple of points off standard, but I was awarded enhanced in my review. I've recently had notification that my current award (enhanced on both) will stand for an ongoing period. Please do everything you can to support your Mandatory Reconsideration. I'm afraid that too many haven't either had the will to pursue it further or simply just haven't. But if you feel it's not the right decision that ball is back in your court.

I wish you all the best going forward & do hope that MR decision makes up that difference.

[Green230461]

Poor tootsies! You keep fighting for more help

[MJSlide1958]

Thanks so much Ajay575