I recently received the dreaded brown envelope in the post: the verdict from my Personal Independence Payment (PIP) assessment. I had been told it could take up to 8 weeks for a decision to come through, so I wasn’t expecting anything for a while yet…
This is a follow-up to MY DREADFUL EXPERIENCE OF A DWP INDEPENDENCE ASSESSMENT.
Surprise, surprise – complete rejection. A grand total of 0 points scored in every single category. Zero. How considerate of them to make somebody barely surviving feel like the biggest hypochondriac in the world. There was a very brief report included from the “decision-maker”, to tell me that I’m absolutely fine because the assessor said so. Which, of course, is quite a dangerous thing to say to somebody who has suicidal thoughts every single day. Now I keep asking myself things like “What if I am just making something out of nothing?”, and remembering the consultant 2 years ago who told me that “10 to 15 types of tablets can’t be wrong, maybe it’s just your personality”. I’d love to read what the decision-maker received from the assessor because it seems she has bent the truth quite a fair bit, and even flat-out lied in some areas. I can only speculate that Atos get bonuses for rejected claims, so they try and guide everything towards a 0-point rejection so that even the appeals struggle to pass. That or the people who choose to work there have a faulty moral compass. “Just following orders” springs to mind. It reminds me of the incidents I’ve read in the past – there was one where an assessor claimed in their report that a man’s amputated foot had “healed”, resulting in his claim being completely rejected. There is absolutely nobody to police these creatures, and there are no consequences when their failings are called out publicly. They could literally get away with murder. I can almost picture the assessor’s smug expression as I receive the decision – she must genuinely feel she is doing good work, defeating benefit scum so that they don’t get a free ride from hard-working taxpayers like herself.
I don’t want to appear bitter, although I can see why it might come across like that. I’ve always been particularly good at hiding bias and seeing things from an impartial perspective – as I’m sure anyone who knows me would confirm, I don’t wear rose-tinted specs. As I pointed out in the initial post, I never honestly considered I would be eligible for this support in the first place. Perhaps how I’m feeling right now means I’m finally learning how to stand up for myself, that deep down I do believe that I deserve better, and I shouldn’t have settled with allowing this low quality of life to become my normal. I think a great deal of my rage also comes on behalf of those voiceless people who have an even greater need for PIP than I do, who are similarly rejected. Every person I have spoken to about this – whether professional, family or friend – has told me that this decision is not correct, I have not been treated fairly and that we need to fight this injustice.
It’s disturbing that friends-of-friends have in the past admitted (not to me personally) that they blagged the assessment and were instantly given a full award when they shouldn’t technically qualify for it. Is that fair, that the system put in place to prevent welfare fraud now seems to reward the people who study for the score-based assessment but penalises those in genuine need? Regardless of your beliefs surrounding welfare, I’m sure we can all agree that this isn’t a desirable outcome.
It seems odd that a remarkably similar assessment process from the same company can rule someone as completely unfit for work – awarding them the highest possible rate of Employment and Support Allowance – but then go on to completely deny them any and all support from Personal Independence Payment. I acknowledge that these two services exist for separate purposes, but there is still a great deal of crossover – obviously, those conditions that make you ‘unfit for work’ are going to have a massive impact on your daily life. If that isn’t evidence that these assessments aren’t fit for purpose, I don’t know what is.
So, what was said in the decision maker’s extremely brief report? Here are a small selection of highlights:
“I made my decision using information about your health condition or disability including details of any treatment, medication, test results and symptoms.”
I suspect this is a standard response template because there was no mention of the references I included from multiple medical professionals past and present.
“You stated that you are also able to peel and chop vegetables.”
At no point would I have stated this; in fact, the same gripping motion that prevents me from holding a pen for long periods prevents me from performing tasks like peeling, chopping really hard vegetables and lifting heavy pans without intense pain. The fact that it causes me so much discomfort is why there isn’t a chance I would have played it down. If this statement is based upon anything other than fiction, I can only guess it’s down to me misunderstanding a question – which makes me wonder how many others I could have misunderstood. When I first applied for PIP and mentioned this difficulty, it was pre-pandemic and I was under the impression that the assessor would be able to examine this for themselves, which would be evidence in itself. With it becoming a telephone assessment instead, obviously, this could not be assessed fairly or accurately.
“During your consultation you were orientated in time, place and did not require prompting, you coped well during your assessment, you had adequate rapport with the assessor, spoke with normal volume and speech was normal.”
I’m not sure how she came to this conclusion over a telephone consultation where she could not see, for instance, the tremors, dizziness and sweat dripping down my face from my scalp. I explained at the start of the assessment that I have difficulties with using the telephone, so perhaps some of these things have been misinterpreted due to that. I required prompting multiple times (as I explained in the initial post) and even had to ask the assessor to rephrase some questions which were far too complex – there is no mention of this. I felt intimidated, under attack, under pressure and demoralised throughout. I most certainly did not cope well during the assessment given that my psychology sessions ever since then have been dominated by what this process has done to me. How dare she suggest I coped well when she has absolutely no idea about how negatively this whole process has affected me.
“You had good memory and concentration and attention throughout the assessment. There is no evidence of any cognitive impairment that would impact your ability to carry out these daily living activities independently for the majority of days.”
Again, I’m not sure it’s fair to say this following a telephone assessment, given how much I was struggling due to the high anxiety situation; frequently having to pause to try and bring myself back – of which the assessor was most definitely aware of, so shame on her for not recording this accurately. I have no recollection of any valid memory recall exercise, other than having to ask the assessor to repeat questions due to my concentration issues. There was no mention in the summary of the incident where she pushed me to the brink and I broke, which took me a few minutes to move on from. Perhaps it’s unfair to comment on such things when she wasn’t in the room watching me struggle. I’m not sure what she expected, given I only really had two options – hang up and forfeit the entire claim, or be verbally humiliated into submission.
“You have difficulty with anxiety, however the evidence does not suggest this results in you being unable to undertake a journey without being overwhelmed.”
Are. You. Serious?! It’s completely unfair to tell me I haven’t provided you with evidence of my distress when I went into detail on this specific subject and you have access to evidence from consultants and a nurse backing it all up. Am I supposed to somehow demonstrate an anxiety attack on cue over the telephone? Do they want all my psychology session notes from over the years? How is anybody ever supposed to prove something like that to them? How do they have any right to tell me what does and doesn’t overwhelm me based on one basic question over the telephone with absolutely zero insight into my life? If this was about epilepsy would I be required to have a fit over the telephone to prove it, if evidence from medical professionals wasn’t enough?
“I have decided you can plan and follow the route of a journey unaided.”
Have you now? She hasn’t mentioned what evidence led her to this decision. It clearly isn’t the evidence stored in their records, where I have always needed to be accompanied to these assessments in the past. Why is it not illegal for her to record the exact opposite of what is being discussed in these assessments? It seems she has blatantly ignored what I was explaining to her about my struggles with disorientation in navigation. My gut instinct was right, she is corrupt and unprofessional. If she can’t work out how to process what I’m explaining to her then that is not my fault – she is the assessor here, it’s not up to me to put my complex struggles into neat and tidy boxes for her. What gives her permission to interpret my complex difficulties as “no problems whatsoever”? It genuinely felt like she was going out of her way to find something to invalidate every detail I explained to her on this subject, and I’m still not clear how she reached this conclusion based on what was said.
“There is no evidence to show any lower limb restrictions and have no specialist input, referrals or investigations into the restrictions that you report.”
I’m not sure how she could have assessed this over the telephone anyway. I appreciate chiropractors aren’t specialists in the sense they require, but if they want to pay £40 for a statement from them, they are most welcome to. I didn’t source any background evidence to my chronic pain as part of the initial application process because this claim has always been, first and foremost, for how my mental health affects my daily life. However, if they are going to ask me questions about my physical health then I’m not going to deny it – I’m going to answer truthfully. It’s not like they have paid any attention to the specialist input I did include with my application anyway – would it have been any different here if I had a diagnosis? I suspect not. At least in a face-to-face assessment, I could have demonstrated the problems.
“You currently take a low level painkiller but only for headaches.”
At no point would I have said: “only for headaches”. Another blatant lie, I can’t believe the cheek of her (well actually, I can). Yes, I do use over-the-counter painkillers multiple times a day, along with heat rubs and a Dr Graeme massage tool for my full body chronic pain, of which headaches are included. By my own admission, it’s not the worst pain known to man, but it’s chronic, extremely unpleasant and makes all aspects of day-to-day life particularly difficult.
“I cannot consider awarding you PIP for any help you need for anything not covered by the daily living or mobility activities.”
That’s lovely, thank you so much for wasting 6 months of my life and completely shattering my confidence in the process.
The Atos model (and I’m sure the same could be said of similar service providers – Maximus and Capita) appears to favour quantity over quality – quick and simple as opposed to careful and accurate – churning out as many of these “assessments” as possible in as little time. The set questions seem designed to skew the results so that decision-makers can keep successful claims to a bare minimum, keeping the welfare spend down. This is fair enough – money isn’t infinite, and tax funds helping those in greatest need isn’t something everyone is comfortable with. It’s just a shame that people even worse off than me will continue to get left behind because of it.
It seems a disgrace that year after year these companies are called out on their massive flaws and defective processes, but our government continues to reward their incompetence with renewed contracts. After a point, you start to wonder if there’s nepotism at play. The whole system is corrupt and not fit for purpose, but I think that’s exactly how the government wants it. It’s the only way of truly keeping costs down, by conducting biased and inaccurate assessments of sick people that records them as “not sick enough” by avoiding asking the correct questions, passing the responsibility onto the claimant so the assessment company would be cleared of any wrongdoing in a court of law.
There is no aftercare or bedside manner that you would expect from anybody qualified to make such medical judgements. I suppose this is like going to a consultation regarding suspected schizophrenia, but the psychiatrist is unavailable, so they send a physiotherapist to take notes instead. The physiotherapist wouldn’t know the key areas to prioritise – a few weeks of assessor training and a set of pre-established questions aren’t going to be of much use in the grand scheme of things. Instead, the physiotherapist relies on what the patient says the problem is, but they don’t understand the things the patient is describing, so a lot of the details which could be vitally important get skipped or played down in the report. It doesn’t seem right that this diluted and skewed account is then what gets submitted to a decision-maker as second-hand “evidence” to form a diagnosis with. Suddenly it makes sense to me why the medical background of the assessor allocated to your case is forbidden information – because it doesn’t matter. They’re not trying to prove that you’re sick, they’re trying to prove that you’re not sick.
Since receiving this rejection letter, I did a bit of research into the scoring system. It made me curious as to what these scores mean. It seems to be a standard criteria-based affair, not too different from how an NVQ is assessed (or was assessed – I’m rusty!), except backwards – where the assessor is actively trying to avoid hitting the criteria at any cost. It is therefore entirely possible that somebody could revise for this assessment, learning which bits they need to ham-up or emphasise, especially the bits that wouldn’t require evidence from a professional. None of the criteria specifically relates to mental health disorders, instead focusing more on how the disorders affect your daily life and mobility – which is fine, because I’ve yet to learn about a mental health disorder that doesn’t affect every aspect of your life. Based on my circumstances and answers to the assessor’s questions, I should have been awarded 2 points for ‘Preparing food‘, 1 point for ‘Managing therapy or monitoring a health condition‘, 4 points for ‘Communicating‘, 2 points for ‘Reading and understanding signs, symbols and words‘ and 10 points for ‘Planning and following journeys‘. The guidance says that pain, fatigue, breathlessness, nausea and motivation should all be considered too – all of which happened to be discussed at length in the assessment anyway, many of which were backed up by the evidence, but all were ignored in the report. I don’t know if that would have been enough to qualify me for an award or if there is more that gets considered but awarding me 0 points when I can’t function without support is so degrading. I feel useless. That 105-minute soul-destroying assessment appears to have been a complete waste of time, and I’m struggling to see what the point of it was. Why are we putting people through that if it doesn’t make a blind bit of difference if an assessor can just void and contradict everything you say and not have to justify themselves in any way?
What happens next? There’s a small section about appealing, but I need to do it within a month of the date on the letter, which I didn’t even receive until 8 days after the fact – obviously not enough time to get any professional assistance during a pandemic, but I suspect they do this on purpose. I can’t deal with any more rejection, to be honest – I have no fight left.
What I do feel the need to do is write a heartfelt letter to the decision-maker. I want to correct the lies the assessor has recorded. I’m not bothered about the claim, but it makes me feel uneasy to let those lies sit there on record completely unchallenged – as if my silence confirms their truth. At least I’ll feel like I’ve stood up for myself. It feels like the most peaceful way forward for me…
…however… with a little bit of assistance, my letter to reject the lies ended up being nine A4 pages long, at which point I realised that it had accidentally become a lengthy appeal in itself. We even went through piles of un-filed letters, pulling out anything extra that might corroborate the other evidence already provided. We e-mailed my GP practice to ask for letters that I had never received copies of originally. We e-mailed my chiropractor and asked for a statement confirming my examination and weekly treatments from 2017 to 2019, but they said it would cost me £40. If I knew for certain the DWP would acknowledge it as evidence, I would pay it, but I know what will happen here – I’ll pay £40 for a statement and they’ll simply discard it telling me it’s not good enough, and won’t reimburse me. I’ve sent it all in a big thick C4 envelope along with their joke of an appeals form (such tiny text boxes to explain yourself in!), and I made sure it went recorded delivery so they can’t turn around and tell me they never received it. I highly doubt anything will come of this, but at least my conscience is clear, and I can say I stood up for myself. I have nothing to lose.
I also received a written response from the independent case examiner regarding my complaint to the DWP about Atos breaking General Data Protection Regulation (GDPR) by storing ancient phone numbers and using them to leave confidential information for unintended recipients. My concentration hasn’t been strong enough to read and process it thoroughly yet, but upon skimming it seems that they are passing the buck, saying that it’s not their problem. Isn’t this system delightful, where nobody ever wants to take responsibility for their failings? Nobody ever gets held to account for their actions. Let’s all just wait until things go seriously tits up and hit the news instead of preventing them from escalating to that point in the first place. Argh!
This whole process has done something good for me though. It has motivated me to get serious about my health, instead of suffering in silence for years on end and accepting rubbish advice as the final word. I want to get sorted. Trying to manage some things myself is evidently doing me no favours. I don’t want to wake up in pain every single day to the point where it has become my default, having to keep a constant stockpile of painkillers. I don’t want to hear high-pitched ringing in my ears all the time, to the point where I can’t watch TV without subtitles. I want this external assessment I was referred to in 2018 to hurry up and happen so that I might finally have some answers about why I am the way I am, and what I can do about it. I want my breathing to go back to how it was a year ago, before I gave up smoking, instead of this constant inability to draw a full breath without great effort. Most of all I want to be able to wake up and not want to go immediately back to sleep because the thought of another day of being alive is too much to bear. My psychologist has contacted my GP with her concerns as our sessions will be coming to an end this month, and they have agreed that I am going to be referred for further psychiatry because something needs to be done. I’m not sure how exactly I can accomplish these goals in the middle of a pandemic, but at least I have some goals now. My life has been at a standstill for far too long. Every glimmer of hope seems to mean a massive uphill battle, and I’m not strong enough to get there on my own. Most days I’m not even sure I want to get there. I’m stuck in a vicious cycle where I need to be able to help myself, but I need help to do that.
Update 22/08/2020: Received the result of my appeal today. No surprise, it was denied again. They arrogantly repeated all of the lies the assessor had recorded as if they were set in stone facts, and said that the assessor is the very best in her field at assessing these things. They came up with a load of excuses, such as “there is no evidence that you have learning difficulties” (I never once claimed to), “the assessor says you can talk to your parents” and “the assessor says you can go to a shop unaided” (there are vital aids needed, but they have ignored these key bits of information). Other comments greatly concern me, but this is just a quick follow-up to bring some closure to the story. They surely can’t believe that these assessors are all doing their job ethically when there is so much whistle-blowing taking place? I’m going to call it a day now anyway. They’ve won.