AIBU to be terrified of my PIP assessment?

[Godstopper]

I have been on an indefinite (apparently not) mid-care and low-mobility DLA award since 2005 and have been summoned to the dreaded face-to-face next week. Atos have already erred by booking the wrong sort of support (reluctant to say for what as there can't be too many requiring it, so possibly identifying) leading to them cancelling several appointments - though they say it's sorted now.

I'm backed up with a fairly detailed GP letter and test results. But I just don't trust the assessor to act ethically. This is wrong as we are supposed to be able to trust these people.

I've requested to record (buying the recorders this weekend) and will also request the assessor's full name, registration number, and report a few days after the assessment so I can begin any appeal well in advance of the decision letter.

Am I being unreasonably paranoid? Whilst we are fine in my partner's income, my DLA has helped me manage things a bit better for myself and cover most extra costs. The thought of losing the only income I have has already made my mental health massively worse (it's one condition I'm claiming for), e.g. I'm still in bed at 11 am because I can't face dealing with anything. Maybe the DWP would be happy if people like me killed themselves to save costs.

I keep trying to find small p/t jobs to improve said mental health but keep getting rejected after I disclose the non mental health condition. Yesterday's rejection was from Sainsburys despite the interviewer saying all my answers were good. Or is it my PhD? I dunno. I don't regard myself as above anything and would be really happy to develop some non-academic skills! I'm just so very tired of building myself up only to get the standard rejection a day or so later.

I am mentally exhausted and now fear dealing with a possible lying assessor. There must be understanding people in this system, surely?

There was a very useful post somewhere on mumsnet which gave some foolproof tips for this...I think it was by someone who had or did work for them.

hopefully someone will come along and know what I mean...I will also have a look for it.x

patient.info/forums/discuss/an-opinion-of-an-ex-assessor-544481

Here someone has copied the post onto another site. It's very good. Have a read and if any of it isn't clear, come back and I'll have a look too.x

Yanbu or paranoid. When you go its essential you let them see how upset you are.
Is there someone you can take with you?

Also, remember you can appeal, and a lot of decisions are overturned on appeal.

Ah that's the one Beeef the website I posted, shared that original one...it' very useful OP!

I am think the thing is now that many claims are denied and then people have to appeal and most then go on to get back their rightful money. I think I'd expect that to happen but know I have to fight. Those people are a shower of shits. Remember to describe yourself on your worst days and possibly bring a mental health charity advocate with you. I've heard of people secretly recording their interviews too. It's your money - you're entitled to it. Don't let them cheat you out of it because of the shitty anti-disability attitude that the Tories are promoting.

I applied for PiP this year, the first time I have ever had to claim a benefit and was a little nervous based on all the stories I had heard. I sent my form in, very detailed but with no other evidence.

I got a phone call on a Wednesday to say that an assessor would come to my home on the Friday the same week. (I didn’t ask for a home visit and was given the option of another date)

A young woman arrived with my filled in form and a laptop. She just asked me the same questions and had me elaborate on my answers. She was very matter of fact, very polite and very fast! There was a little bit of friendly chit chat but not a lot.

She asked me to perform a series of physical moves, made no comments about what I could or couldn’t do. Then left. Two weeks later I had a letter saying I was being awarded both parts enhanced.

It was much less stressful than I had been led to believe. HTH

Hi,

Yes, my partner is attending (as I can't go to unfamiliar places on my own).

Having a read of that thread now and somewhat horrified by the first post (though of course, reassured to see that some assessors see the system for what it is).

What I have in my favour is an ability to argue logically and well (my PhD was literally in doing that!), and I am not afraid to challenge factual inaccuracies. I might be if I didn't have the resources to do so, and sadly, I suspect that this is the situation many claimants find themselves in - one of simply giving up as navigating the system can be extremely challenging.

I also suspect a number of claimants naively trust the assessor (of course they do - we want to believe medical professionals are trustworthy) and don't think to record their assessment. I also suspect that some will want to show off all the things they can do and put a brave face on. That seems to be the worst thing you can do.

I'm also going to take my form with me, copies of evidence, and the updated descriptor changes (from Nov.) that now apply to me. It used to be that people like me could only score points for one sort of activity (for the non-mental health condition) but should now score from others including standard mobility (partner comes everywhere unfamiliar with me as I'm a bit of a hazard at times to say the least!).

I need to calm down as getting this wound up is obviously no good.

Hi uglyflowers,

I think I'll be sticking to the worst possible day. I do have days when things go well (like most with fluctuating conditions) but they don't extrapolate to most of the time or I'd be working and going about normal everyday life.

We won't be covertly recording as we've already notified them of our intention to do so. If it's denied, I'm going to query why (though partner has a sophisticated phone so I guess she might try if we're denied!).

Is talk about bonuses for failing people really true? I don't know if that's just scaremongering, because if it is, it goes against the very ethics of the medical profession.

I think the tabloid press have whipped up this into a frenzy and it is not reflective of the vast majority of situations.

We applied for DLA renewal for our daughter and everyone was giving it "oooh, they are getting really strict, you might not get it". Because of timing, I wasn't able to get any supporting info whatsoever, not even the bit a specialist can fill in. It was renewed without a single query.

There have been some high profile cases where it went totally wrong and their appeals percentage is higher than it should be, but it doesn't make a good press story that someone got their PIP renewal no problem.

Hopefully it will all go well, no point worrying, just remember to present your worst day!

Well, my worst day isn't difficult as I don't get out of bed!

Many people with my condition are being awarded 8 points for communication and losing their mobility: it's awful. We should, in line with their descriptors, be scoring for social support to engage with people (or most of us should be), for safety risks when showering/bathing, and for assistance outdoors.

I agree it might seem that problems are massive as people who go through the process smoothly are less likely to come on-line and talk about it.

I understand that we're allowed to see what they are writing in the assessment (it's in their guidance) so I will ask to see. I suspect all my requests might seem annoying, but I'll be the most vulnerable person in the room.

I thought I'd update.

I think the assessor was as nice as she could possibly be given the situation, and she did keep stopping to say what she had written and would I like to clarify anything - however, I won't know if she actually agrees with it until I see the report. She had the right balance between being professional and empathetic.

I had ticked 'No' to most options (being deaf it's obviously communicating and needing help going to unfamiliar places) but because of my mental health diagnosis (PTSD) she went through all of them. For example, I'd said I didn't need help to get dressed, but she said that covers mental health too so was putting that I "require prompting" to get dressed most days from my partner - the word 'prompting' appeared a lot for other things such as cooking too. But, of course, I don't know if that's what she'll say herself. I hate feeling this paranoid about the process.

I did become genuinely upset when the questions became a bit much as she was insistent on going through all twelve activities in quite some depth. I also didn't like the questions about self-harm and suicide either, but I suppose they must ask that for those who have a diagnosed MH condition.

I got the "do you read", "work", "have hobbies" Q's, but didn't get the ones deaf people usually get for the mobility Q like "why can't you just use Google maps" thank god.

She was very insistent on having numbers of days a week I'm affected by x. The only time I couldn't be clear about that was for my episodes of vertigo as it really does come and go. I only see my GP for that if the episodes go on longer than a day or two now as I'm used to it and just lie down. The episodes come in clusters and then go away (it's all deafness related in my case) so I felt I had to blurt out some number for my worst week and now feel like a fraud! It's all true but I got the sense the form isn't really designed to accommodate fluctuating conditions.

I was asked how I get around, how I got there today, how I get to my therapy appointments (partner drives me everywhere). I'm now terrified because I said I could cope with a familiar route with my partner and will try to go out for a dog walk once a week (true) to boost my mental health. I hope that doesn't become "strolls all over the neighborhood and doesn't need help getting to unfamiliar places." The number of times I've missed trains, been stranded, or had a drama when I've gotten lost isn't even funny. But we'll see.

The interpreter was a massive help too. Also, the assessor seemed encouraging of the recording.

I have NO idea how people get through this without support and can see how those who give vague answers quickly get into trouble. I clearly stated "I cannot do x reliably, repeatedly, and safely" to try and avoid confusion. I still feel mentally exhausted today. Don't quite know what I'll do if my DLA doesn't transfer or is at a reduced rate - current thinking is that I simply cannot face dealing with the system, but then, I suppose that might be the point!

A relative of mine has autism & other health problems (neurological and others) and was award 0 points on the basis the he managed to answer the questions on his own. 0 points even though he is not physically capable of washing himself and has frequent toiletting accidents. 0 points across the board even though he is on a 3 year ESA award. Questions were like can you cut a potato? No Well can you cut a carrot then? Etc

Hand on heart I believe they are giving everyone bar the most severely and obviously disabled 0 points and hoping people haven't got the emotional strength to appeal it

Hi Elend,

Does he have someone who can appeal for him? Or if too much time has elapsed, perhaps someone who can help him with the form? I believe that CAB are increasingly overwhelmed by this, but there must be specialist charities.

I honestly don't see how the "requires communication support" can be disputed for me as I had a speech to text interpreter coupled with my partner writing stuff down. She said she was putting in that box "has information written down the majority of days as cannot hear people talking, traffic, etc." I admit to being a bit puzzled when she asked if it was likely to improve (no! it's genetic!). However, I think, when a health professional isn't familiar with a condition (she was a nurse), these sorts of Q's might seem natural.

I do worry that my ability to express myself may go against me (friend of mine was told he had too much "insight" into his depression!), but it's not my cognitive abilities that are in question.

I did notice that anyone who could walk to the room would probably instantly lose mobility as it was at the end of a fairly long corridor. Found that a bit suspect, but irrelevant to me as I never said I have issues physically walking - I got pushed on that because of the episodes of vertigo but just said I'd go slower and hold onto my partner (true - ground feels a bit marshmallow like but I can move). I see no point in exaggerating that as my main mobility issue is needing someone when I go to places I don't know.

I'll ask for the report next week as it'll give me some idea of what the likely award will be.

my DLA has helped me manage things a bit better for myself and cover most extra costs, this is exactly what PIP is for!

YANBU to be terrified, as I was, but I hope you will be as pleasantly surprised as I was. The assessor was a lovely woman, who had been a nurse but was unable to work on wards due to back problems herself. She had also been bullied, on the same ward I was bullied on, which was really the start of my mental health problems, so she could relate. I doubt you will be that fortunate, but the hope is there that you will at least get a reasonable human being!

Hi TJ,

So you straightforwardly got your award?

I don't think my assessor was out to trick me like you sometimes read. But I do think she must have had standard questions to ask. I mean, if you work in, say, a customer facing role and say you have issues engaging with people, then that's a problem. I don't think I'll score more than about 2 points on most of the daily living ones except the communication support where it couldn't have been any more obvious. That seems reasonable to me.

I explained that the rules had recently changed for deaf people (and others with sensory impairments) and that the harm that might happen to us should now be taken into account rather than just the likelihood. My partner said she didn't seem at all offended by that but wouldn't (understandably) be drawn. She couldn't as a professional. I wanted to be clear about what I thought applied to me and what didn't. I had a load of notes as it's really the only way I can concentrate: if something is unpredictable or I don't have something to follow, I become stressed quite quickly - this is fairly common for deaf people.

She offered to stop at several times as I was becoming stressed but I was worried that would be marked as non-compliance so carried on. Just best to get it out of the way.

Have seriously underestimated how bad it would affect my mental health. I'd be seriously worried for someone who was, say, already suicidal going through this.

Godstopper my assessor was lovely too. She came to my house and was really kind. She allowed me to take my time and listened to what both DH and I said. I got quite upset by it all but she didn’t rush me.

You are allowed to ask for a copy of the report she sends in. I did. I started making the notes and sorting out my case for a mandatory reconsideration before I’d even received my decision. But I was very lucky, my PIP was awarded at the same rate as my DLA had been.

Good luck.

Yes, I did! I was amazed. I was all set up to need to appeal, as I had read all over the place that people were being declined at first but winning on appeal.

I was a bit of a gibbering mess a lot of the interview though. The way they press and press and press for more info is hard to handle when you are mentally ill, but it showed how bad I was feeling and having read now about your experience, it sounds as though you were similar.

Hand on heart I believe they are giving everyone bar the most severely and obviously disabled 0 points and hoping people haven't got the emotional strength to appeal it

Sorry, but that just isn't true.

I was on low rate care and low rate mobility lifetime award for DLA. I had to re-apply for PIP in March this year and was given standard care and enhanced mobility without attending a f2f at all.

My sister (same condition but more severe) was on middle rate care and higher rate mobility for DLA and was awarded enhanced for both when moved onto PIP.

Some people are getting higher awards. Some are getting lower (or no) awards. It all depends on the condition.

Sweet I'm just speaking from personal experience. I know several people who have gone from an indefinite award on DLA to a total of 0 points on PIP. Being disallowed under new rules is one thing, but so many getting zero points is quite another.

My relative is appealing yes, and has someone independent going with him to the hearing but isn't very hopeful sadly.

My DS received high rate mobility on DLA and Middle rate care.
He was awarded nothing on PIP.
The assessor lied and twisted everything we had said.
We appealed and he was awarded enhanced rate mobility and low rate care.
The system was a complete sham and caused us a lot of unnecessary upset and stress.

For MrsLHs (eventual) assessment we discovered that not only does the assessor not have a copy of the PIP submission, but they aren't allowed to take it with them.

The assessor wanted to effectively fill in the form from scratch, reading out the questions for MrsLHs answer.

To which I read out the answers we had originally provided.

Towards the end, the assessor asked if MrsLH has a low-vision certificate ... which I pointed out would need to be asked if someone had read the original submission as it was included. But with the magic of technology, I could make as many copies as they needed, email them anywhere that mattered, or put it on Facebook. Turned out that seeing a copy on my tablet was sufficient.

(MrsLH got her PIP).

The whole "system" is clearly intended to deliver something other than what it's claimed.

I dont know if its different for young people, but I was terrified for my ds1s PIP assessment when he turned 16 but I did get some helpful advice in advance from an autism charity, and the assessor was actually very sympathetic and herself had a child with ASD, and his PIP was awarded without problem. I really hope yours went OK

Try not to get into a state about it.
I know it's not easy,as the first thing you do is look on internet for anything to do with PIP and what you usually read are horrible stories about what seems like loads of applicants being refused. You don't hear much about the success stories,but they do happen.

I applied for PIP and was so nervous.
I didn't have any evidence at all, just some prescribed tablets, that's it.
Turned out, the assessment went quite well,no lies were written in the report (just a few minor things) and I didn't wait long for the result which actually awarded me more than expected.
Good luck!
🙂

Hi LurkingHusband,

My assessor had my form as she went through my diagnoses with the dates on and sometimes referred to things. Don't know what happened in your case.

I do agree that it's designed to be a cost-cutting exercise. I don't know about all this scare talk of assessors being paid bonuses to remove PIP - I think it's more to do with the number of reports they produce rather than the result.

I had a GP letter and my audiogram. The mental health service said that they don't usually get involved in this sort of thing unless someone is going to appeal. If I have to go through it again, I think I'll get a copy of my medical records so I can send something more comprehensive - they certainly don't check themselves except in rare cases.

It's very hard not to be angry at the process. It is our G.P's and other specialists who know us and not an assessor who sees us for an hour; but the weight of the evidence is on what occurs in the room.

I hope my recording will have prevented any deliberate lies. I can understand that some things may be forgotten or not phrased quite right when doing the final report, but blatant lies should bear on their fitness to practice.