Got my decision letter today after applying in January. It is a total misrepresentation of what was said at my telephone assessment. I have received no points whatsoever even though my mobility is terrible.
I knew I would not get anything for the care component but thought at least the standard for the mobility.
I have been told I can walk 200 metre’s which is a joke and because I drive a manual car once or twice a week locally I am fine.
I already have a blue badge due to my mobility and I struggle to walk due to heavy weak & painful legs, I also lose my balance quite a lot and have fallen a few times. Also stairs are a big problem for me.
All I can say is the PIP system is a joke on to the mandatory reconsideration.
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Obviously you need to appeal!
Did you include medical reports from consultants to GP’s etc? Without corroborating information from professionals, everything else is frankly hearsay. That’s not to say I doubt you, but you need to back it up.
Might be worth swapping your manual car for an auto? Takes away another of their arguments. With £490/month at stake, it might be worth doing, plus they are easier to drive.
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Hi
Yes I did include medical reports explaining about my leg weakness and also MRI reports.
I was totally honest about everything I was asked during the assessment but how can you assess how a person walk’s over the telephone.
I don’t drive much anyway my husband does but I do try to go out on my own at least once a week if only to get out the house.
I will look into an automatic car but I have decided honesty doesn’t pay.
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You have to stay on the side of honesty, always! Especially if you are asking your professional team to corroborate your capabilities (or lack of).
It may be that you need your medical reports to be more prescriptive, as it sounds like what has been written does not currently support your actual abilities well enough. Let’s not forget that we have a degenerative disease - not everyone applying for PIP is in that unfortunate position. Get them to write an update. Rather than addressed to the PIP panel, it would look bertter if it was presented as an update from Consultant to your GP.
Talk to your MS Nurses and (if you have access to him/her) MS Consultant and explain what has happened. In my recent experience, MS Consultants look at much more than the EDSS score - they are aware of its limitations. They will be on your side.
Be careful when bringing up the car. You don’t want to provoke a referral to DVLA about your ability to drive - better to make the change unilaterally and then report that you found it easier in an auto. The fact that you’re not trying to drive something that you potentially cannot control then disappears.
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I am have a telephone consultation with my consultant beginning of May so good timing.
As far as my driving goes I don’t have a problem with the manual car & my MS does not affect my ability to drive safely.
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Hi @Muffin, just thought I would follow up to see how you are getting on. I have been in the same situation. DLA expired so I applied for PIP. I was shocked at the letter that I received. It was written as if it was about a totally different person. I did challenge many of the statements, contradictions and omissions. No joy! At the time I hadn’t got the energy to fight. 3 years later I am considering trying again. If you google ‘completing PIP’ there are a number of advisory services that may help you.
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Hi Rogue
Not heard anything back from the mandatory reconsideration but not expecting anything to change.
It’s only the mobility part I have applied for, But the information I have received detailing my assessment is misinterpreted. This assessment was carried out by a nurse over the telephone and it is obvious to me she was not familiar with MS. She has failed to take into account how my MS affects me on a daily basis especially my mobility.
I will update when I get my decision.
Best wishes.
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Hi Muffin
sorry to see you got no help from PIP, I also scored Nil on all sections. I am going to start the process of an appeal. Filling out the form is painful enough without having to talk about difficult things to a complete stranger over the phone. The person I had kept telling me to wait as they were trying to type and listen. Keep the faith and try again.
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Hi @Pebbles88, nice to have you with us. What is it with PIP assessors. I do get the feeling they read and respond from a script.
There are some success stories on this forum so hopefully if you try again you will be better informed.
Sorry to hear about your situation. I had the same thing happen to me both with my PIP and Universal credit. I could not believe what I was reading. I have PPMS and yet both the PIP letter and the Universal credit letter telling me I wouldn’t get anything made me out to be some sort of athletic Mary Poppins. I’m sorry but I don’t think you will succeed in the Mandatory reconsideration because the problem that you face, just like I did, is that the lies that the Health care ‘professional’ told are believed again at the reconsideration stage. I think you need to start concentrating on the final appeal stage. I’ve seen other posters say ‘Don’t lie’ . I say you have to fight fire with fire. The representative has lied about the telephone interview so for me it’s not a matter of blatant lies a bit more of, let’s say, expanding the truth. Think about your worst day and double it and keep that in mind throughout contact with DWP. Don’t be afraid of the appeal process; it’s your chance to prove what liars the DWP are. At the start of the process complete both the living and mobility parts. Remember your mobility will effect your ability to live a normal life, look at your worst day,double it, and think about washing, cooking, cleaning etc. Look at the descriptors wrap your MS around the highest scoring points. At this point I will introduce Emotional lability, state how this can cause you to have bouts of anger or irritability. I completed both sections and I ended up getting the basic living rate as well as the mobility rate. Fatigue can also be used, explain how this causes you problems. Remember you have to be able to walk a certain length over and over, not just once. I used this on my LCWRA to good affect. You cannot get enough letters to back up your case. I was a bit embarrassed at first to ask but these people are here to help, get them to explain your problem and get them to write the magic words ‘ This can become more severe on certain days’. My Doctor, Consultant and MS nurse were all brilliant and wrote me letters. I cannot really comment on car driving because I don’t drive. Good luck and remember it is your birthright to be looked after in times of illness. I worked for forty years without going sick. We didn’t ask for this illness nor did we deserve to be treated like liars by the DWP.
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Hi the same has just happened to me!
Just heard back about the Mandatory reconsideration. Again no points awarded for anything. I think it’s a disgrace Multiple Sclerosis sufferer’s are being knocked back when applying for PIP especially when there condition is impacting on day to day life in a big way.
All I can say is that the people making the decisions about the PIP awards haven’t got a clue if they had to live with a life limiting condition themselves they might understand what people go through.
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That’s terrible news.
Not gloating, but I’m starting to feel guilty about getting my PIP when so many are being rejected. We need to do something about this. Not quite sure what, but “we” (pwMS - people with MS, the MS Community) need a template that ticks the right boxes on their forms and maybe even have dialogue with DWP to help them better understand MS, in its many flavours and degrees. I’d be happy to contribute to such a process but imagine MS Soc and/or MS Trust could take a lead on modernising the MS eligibility criteria for the PIP assessment panel. What’s clear is that degenerative / autoimmune / neurological conditions are not properly catered for by PIP.
Controversial statement:
Not everyone with MS should qualify for PIP. Only diagnosed in Feb’21, my symptoms were evident 9 years ago and really started to take hold of me 6 years ago, but honestly, I only started having to make lifestyle decisions based on declining capabilities 3 years ago (still in ignorance of a diagnosis, so no label). Today, I could work maybe 24 hours a week tops, and that would be home-based with very occasional travel. That’s just me though. Part of whatever the MS community comes up with for PIP eligibility would need to involve some expectation-setting so that not only assessors are properly cognisant of MS and its ramifications, but applicants as well.
Edit: Just got off my soapbox and keyed “PIP” into the search box on the MS Soc homepage. Seems they’re already onto it…
PIP Fails. The report dates back to a pre-Covid 2019, when the intention was for everyone to be assessed face-to-face. It would appear that rejections have increased under Covid restrictions, which like much of the public sector, have not fully embraced a return to the office.
I’m having a similar experience with PIP… Applied in Aug 2021 and awarded 6 points for daily living and 4 for mobility in Dec 21. Applied for mandatory reconsideration and awarded 1 more point in Feb (1 point short now) so I have appealed. I sent more evidence, including one from my GP detailing how my disease affects me, and a list of how I disagreed with their comments and more examples, and DWP wrote back to say they are not changing their mind, so I’m still waiting for an appeal date… I cannot believe that vulnerable people like ourselves have to wait for nearly a year to complete this process. My anxiety around the whole situation is immense but I refuse to give up as I feel that’s what they want. I truly believe that someone living with a chronic illness like MS should automatically get a base level benefit as our lives are very different to those without such diseases. I am told that approx 75% of cases that go to appeal are awarded PIP so the system is broken. What a waste of time, money and effort going to appeal when they could just do the job correctly at first! I’m ranting now but just wanted to share my experience. Meanwhile, I continue to wait and worry about having to attend an appeal!
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Hi JoeyC
Sorry to hear what you are going through. It is disgusting we are being treated this way. Why should we have to fight to get PIP. I myself have now given up I will apply again at a later date.
The trouble with me is I look so well but people don’t see me when I struggle to get upstairs or out of the chair. I hope you go on ok with the appeal but do try not to worry to much about it because that won’t do your health any good.
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I’m the same. I look fairly normal and ‘well’ but I’m actually not and MS has affected the way I live my life in lots of ways. It’s such a drain at times but then I also have better days. I’m on a mission now as it’s just so unfair that the system is the way it is! I hope you have success reapplying at some point.
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Hi, GCCK, I think your your idea is great, some sort of template or tick sheet.
We all put up with so much on a daily basis it almost becomes our ‘norm’.
When we need to write it out in a PIP form it is very difficult as it becomes very depressing and kicks up the anxiety.
I am going through the process again, I applied over a year ago scored nil.
No surprise I experience more difficulties (RRMS).
My form needs to be sent off in a couple of weeks I keep people updated.
When I am successful I would be happy to share key phases or key words.
Kind regards
I’ve just had my PIP denied aswell. Absolute joke when we have a real chronic illness and there are people taking advantage of PIP and over exaggerating symptons to get money. The form makes out as though there is nothing wrong me i am disgusted that this has happened to so many of us.
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Are you going to appeal?
New here and recently diagnosed with “non presenting” MS. I have lost part of my visual field and been through IBS and SVT, have recurring bouts of extreme tiredness and brain fog.
I have previously applied for PIP and also scored zero. I had assumed a confirmed diagnosis would automatically ensure I am able to receive some sort of benefit when I push the button and apply for Universal Credit. Is that NOT the case? Will I be expected to try and apply for jobs in order to receive any benefit at all?
I am currently self employed (that’s really just my way of saying unemployed) and receiving low income allowance. That stops the instant I apply for UC followed by weeks of extreme poverty before you even find out what benefit you might expect. Is there any help for those clueless about such matters?