Generally, I don’t talk about my private life online, but I recently had an unpleasant experience which has distressed me enough that I feel the need to write about it.
I’m not writing with the intention that monumental change is going to follow or that nobody else will ever have to go through something similar. I don’t have a loud enough voice for that sort of thing. This is purely a statement on how it made me feel, because I need to get it off my chest in detail.
Part 1: The Background
Back in early January 2020 my mental health nurse encouraged me to apply for the government benefit, Personal Independence Payment (PIP). It is not a work-related benefit; it exists to help adults with the extra costs of living with a long-term health condition or disability. An award would make me eligible for a few schemes that she thought would genuinely help me, having come to a bit of a dead end with other therapies. She had mentioned PIP to me a few times previously, but I was reluctant to unnecessarily put myself through the medical assessments, having been traumatised by similar ones in the past. A representative from the local Council helped me to fill in the lengthy application form, because some of my struggles prevent me from doing this effectively myself.
Fast forward 5 months later to early June – I receive a letter in the post to say they have arranged a telephone assessment for the following week. The government-appointed service provider is Atos, of course – you’ve no doubt heard the horror stories with their assessment process being so accurate and fair that they deem terminally ill people as ‘fit for work’, only for them to die a fortnight later. A quick Google search will provide you with a plethora of controversy, including whistleblowing from ethical former staff members. They’re calling themselves Independent Assessment Services now. I assume it’s like when companies re-brand to distance themselves from all the negative connotations the previous name came with.
The original plan – and the deciding factor in my agreeing to apply – had been that my mental health nurse would attend the assessment with me as support. I assume she would be able to spot when I was selling myself short, something I’m not yet able to recognise myself. Alas, due to the COVID-19 pandemic, all assessments are now telephone based which meant I was flying solo with no immediate support. I don’t want that to sound like I feel personally victimised by the pandemic – it’s just frustrating that it is affecting so many aspects of life. My mental health nurse did thoughtfully invite me to take the call on speakerphone at her base in a socially distanced way, but I declined as getting there would have been a health risk. I have always struggled with speaking on the telephone (but that’s a different story) so my anxiety was elevated slightly more than if it was a face-to-face assessment. On the plus side, it might provide me with the opportunity to try and overcome a personal barrier.
The day before the assessment there was an incident where they left a reminder message on my parents’ landline. I was furious. I’m not sure where exactly they got this phone number because I certainly did not write it on my application form. I haven’t given it to anyone in over 10 years because it’s not my number – I’m not directly contactable on it. I suspect the company isn’t proactive in ensuring the data they’re storing is current. The message that they left gave my full name and details of what my assessment was for, which invited questions from family members. I had wanted to keep the situation private until it was all over, because less fuss makes it easier to cope with stressful situations. I’m sure I’m entitled to that level of privacy as a bare minimum. I have reported this incident to the Department for Work and Pensions (DWP) independent case examiner although I do not expect them to take my concern seriously.
I got myself all prepared for the 11:45am appointment. I liaised with people in the house to make sure I had comfort, complete privacy (so that nobody could overhear me talking about delicate matters) and no distractions. Then I get a telephone call to say they’re running late by about an hour, which throws all my plans off and means my prepared private space is no longer available to me. I don’t generally cope well when things are changed at the last minute, so it already feels like they’re going out of their way to put me on edge, even though it’s likely just an unfortunate setback. I persevere and try to make alternative arrangements, but I can already feel my heart racing and hands shaking.
Part 2: The Assessment
90 minutes of twiddling my thumbs later I receive the actual call. She tells me only her first name (no indication of her job title, qualifications or background) and wastes no time with any pleasantries, getting straight to it. On first impressions she is cold, rude and intimidating – leaving me reluctant to share the more sensitive details. I’m trying my best to comply and help her build up a picture of my life as a whole, but it seems she’s only interested in putting me in either the Yes box or the No box – there appears to be no in-between. She raises her voice like a cross schoolteacher if I try to provide her with information which she has no interest in, despite it being essential to my daily struggles. She makes me feel like complete scum as if I’m nothing but a benefit cheat, out to scam the system. I’m made to feel dirty and disgusting when I respond to brutal, invasive and personal questions with embarrassingly honest answers. She doesn’t seem to understand that the limits my living situation imposes are out of my control. I pour my heart out to her and she responds patronisingly, like her role somehow puts me beneath her as a human being. I’m afraid of being completely honest because it feels like she’s making personal judgements about me. At one point she attempted to override a diagnosis from a consultant at The Priory Hospital – maybe because it did not align with whatever was on her screen, or perhaps what she saw once on TV. She struggles to grasp why my current diagnosis of “treatment-resistant depression” didn’t apply from before I began treatment (there have been many different diagnoses over the years).
Obviously, they do need to know the tougher details, but there was one moment where she interrogated me about something deeply personal. It’s difficult to be specific here without revealing things I don’t want to, but she responded in such a way that suggested she thought it was stupid or didn’t make any logical sense. We all know that mental health conditions like to consider logic before they take control of you… </sarcasm>
She questions me about my employment history. I explain to her that I was an NVQ Assessor for many years. She audibly and very obviously sounds gobsmacked – this evidently didn’t fit her image of dirty benefit scum. I felt like I had given her reason to challenge rigid core beliefs about benefit claimants, but I know this will be forgotten before her next call.
She asks me about how I cope with navigation. I explain my struggles to her in detail and point out which elements cause me the most distress. She seems incapable of understanding the logic behind the complex situation, yet somehow turns that around to make me feel like a complete moron. What’s that down there? Oh, it’s just my confidence hitting rock bottom.
At one point she refuses to let me speak and I become irritated – my voice crumbles and I punch my head 3 times in frustration. Obviously, she cannot see this over the telephone. I felt like telling her how much her attitude stinks. I suspect if it had been me with the same attitude, she would have ended the call citing her right to respect. I calmly ask her to give me a minute to compose myself and I tell her straight that it’s because she has completely broken me. She responds to this remark with deafening silence. At this point I feel ready to hang up and be done with the whole thing – there is no point, things like this never go in my favour and it’s just going to undo all the hard work I’ve put in to my recovery over the years.
When I feel ready to try again, I apologise. I’m not sure why – she is at fault – it must be my submissive nature. I politely ask her to repeat the question, and we attempt to continue. She persists in putting too much emphasis on things that are unrelated to my case, and not enough on the things that are. Can I wipe my own bottom without assistance? Do I have a smartphone with internet access? Do I have a phone contract? I feel like having the cheapest phone contract available and a handset that was purchased for me as a gift will somehow handicap me. She asks questions and uses terms that I do not understand, becoming arrogant when I ask her to clarify. The shoe is on the other foot when she doesn’t understand my answers. It seems very unfair that she is pushing me into diluting my answers so that they sound less severe, and then records that instead of the full truth. I imagine if I told her I regularly suffered seizures that confined me to bed for days, she would focus on the fact that I do eventually recover, therefore it’s not that bad.
At one point she asked me to give her a reason why I have a certain mental health condition – and would not accept that after multiple rounds of therapy I still don’t have that answer, and certainly couldn’t come up with a suggestion on the spot. It was clear that she had no basic perception of how mental health and its treatment works. For some of her questions she asks me to generalise with matters that are unfair to simplify, but then asks me to be specific about them. I’m expected to instantly put a figure on how often something occurs per fortnight when I’ve never given it any thought previously. I am so confused – I feel like she’s deliberately trying to wrong-foot me. It does not feel like she is conducting a professional, fair and accurate examination.
She berates me when I mention regularly visiting a Chiropractor for chronic pain, because a medical professional hasn’t formally diagnosed anything. The concern has been raised multiple times with two different GPs over the years, but these things always seem to fall on deaf ears – they just recommend painkillers and stretches, which only mask the problems instead of solving them. Fibromyalgia had been suggested to me by several people in the past, but my GP didn’t seem to think it was worth looking into. Am I supposed to pretend I know better than the medical professional and push for more? In hindsight perhaps I should have fought for an investigation years ago, before pain became my daily default – but I am not a persistent person by nature, and I will suffer in silence as opposed to fighting for what I deserve. I don’t like to feel as if I’m wasting my GP’s time by returning with the same complaint (especially when they have one month wait times for appointments), and I don’t like being a “Dr Google” patient who thinks they know better. This is what decades of critical thinking does to someone’s self-respect. I know I need to be more assertive, but that isn’t something I can fix overnight. I certainly wouldn’t be spending £42 a week for 15-minute massages/adjustments if the pain weren’t causing me significant discomfort. I didn’t appreciate being treated like a hypochondriac when I’m just someone who keeps falling through the cracks. Of course, I do accept the reasoning behind it – someone could just claim they had any old syndrome (and people probably do) – I just wish she had understood the reason why I’m not mentally strong enough to stand up and fight for myself. Funnily enough the point of PIP is to help people be more independent…
Part of me wonders why they don’t just write to the professionals in the first place if they’re only interested in their opinion. Honestly, I wish they would do just that, as my record would build an accurate profile of exactly how long I have been struggling for and validate everything I’ve told them. Surely the whole point is that Independent Assessment Services are assessing me – so even if a professional had said I was paralysed, they would still want to assess for themselves. Still, it doesn’t matter – the claim was intended for my mental health, not my physical pain.
By about an hour in I’m feeling pretty much over the whole thing. She has defeated me. She is rushing and pressuring me again into giving simplified, inaccurate answers because she doesn’t know how to process what I’m telling her – as if it were my responsibility to know the kind of response her system would prefer.
She made me feel like I hadn’t been trying hard enough to get support. It must be nice to be blissfully unaware of the complexities here; to not realise that unless you are making regular serious attempts on your life, there isn’t a great variety of support available to you – just an endless cycle of lengthy waiting lists before being quickly discharged again. Don’t imply I haven’t tried hard enough when I’ve been told on numerous occasions that I’ve exhausted all services available to me. That’s soul destroying. My mother was so desperate to help me that at one point she was paying £180 a week for me to access private services at The Priory Hospital with a top consultant. Of course, I struggled to carry the guilt over this huge expense. I wouldn’t be here now if I weren’t trying to help myself. I’m so grateful to have ongoing support from a mental health nurse, but by her own admission there is only so much she can help with. When you don’t want to be alive but stick around only so that your family’s future isn’t dominated by grief, it’s extremely difficult to find the strength to fight for your own.
She goes on to demand the result of an external assessment I have been waiting to take part in for well over a year. I explain that the referral was chased in early March 2020 and they said I still had 6 months to wait – which will presumably be even longer now due to the pandemic. She cannot fathom why I have not got the result yet, as if the massive waiting list is somehow my fault. I have no fight left. She is clearly not interested in building a complete profile of my life or my daily struggles and insists on fighting with me at every single point.
Still, the assessment drags on for another half hour. She starts repeating questions she has already asked me. She reeks of incompetence and judging by her lack of understanding is not trained in any area relating to mental health. I suppose it’s similar to me carrying out a MOT on a car because I have an A1 Assessor certificate, when I have no idea how motor vehicles work. She seems unfamiliar with the documents and references I included as part of my application, like she hasn’t bothered to read them. This caused me to worry that they’ve been lost in transit.
She comes to the end of the assessment. Suddenly, she is like a different character – she tells me that I sound like a “really lovely person” and that she “hopes things start to get better for me”. She asks me not to be disheartened if things don’t go in my favour – I know exactly what she’s trying to tell me here: I don’t stand a chance. I tell her that I appreciate her comments, and the call ends. She calls me back a few minutes later because she forgot to ask me two questions.
Part 3: The Aftermath
Afterwards I found myself feeling deflated and voiceless. The assessment was so much more intensive than any psychology session I’ve ever had. It was more like a police interrogation with a “Bad Cop” than a medical. All those invasive questions, yet none of them seemed to touch the sides of my daily struggles. Nothing about:
- having to fight to maintain concentration on basic tasks such as boiling a pan of water (and believe me, writing this statement has been a week-long mission)
- the constant brain fog where I periodically forget the PIN number I’ve had since I was 16
- the public meltdowns that mean I now must wear headphones playing loud instrumental music just to enter a shop
- the incidents where my anxiety has been heightened so much that I am basically only present in body: unable to function or remember any details about the situation afterwards as it’s just a blur
- the pain in my hands which makes it difficult to do things like use a pen to write more than a few words
- my medication being a strong sedative which makes it an endeavour to wake up in a morning
- how I frequently have to go days without my medication (especially over a weekend) because I can’t work out the right time to re-order my prescription and I’m not confident enough to ask the pharmacy to help me queue jump
- how I need to sit and perform breathing exercises, so I don’t faint from the overwhelming physical symptoms of anxiety
…among many other examples. All seemingly irrelevant. “Why didn’t you mention them when you had the chance?” you may ask – well, she made it abundantly clear she was only interested in direct answers to the specific question she was asking at the time. It’s also unfair to expect somebody with my symptoms to recall every detail of their life during a pressured situation. You may also ask how any of those things would be improved by a PIP award – I believe the intention is for it to open doors to beneficial therapies where otherwise cost would be prohibitive. I would have expected their algorithm to flag up a few questions about Lithium Therapy too, given how dangerous a drug it is – but nope, nothing. She made the struggles that have destroyed my life seem meaningless, as if I’d grazed my knee and wouldn’t stop going on about it.
I started to question myself – perhaps I came across as rude and stand-offish due to my anxiety, her defensiveness and inhumanity being a response to that. No, that’s not fair – I mustn’t try and excuse her poor conduct. Perhaps her superiors have insisted on this approach because they believe that good bedside manner skews the results.
I’m not stupid. I know how this goes. Score-based systems like this work in such a way that they’re easy to manipulate by dishonest people, but those who are honest throughout and unable to stand up for themselves get thrown in the rejected pile. I was always adamant that I wouldn’t qualify for this help in the first place, but people kept telling me that I absolutely do, that it exists to help people exactly like me. I can’t imagine having to go through this trauma every 12 months like other claimants. I’m 100% certain that I’m going to receive a rejection letter in 8 weeks’ time, and I know it will take some convincing to get me to appeal the decision. I have no idea what the appeal process entails but if it’s a second assessment, count me out. I’m done. If there was one thing that could push a broken person closer towards the edge, it would be one of these “assessments”.
I am genuinely intrigued to see what the decision maker receives as a result of this assessment, and whether a bunch of second-hand statements are any real-world use without the context and background that brings them together. Unfortunately, this system has existed for years; if multiple fatalities can’t change it, nothing will.
Days on from this experience and I’m still really struggling as a result – thinking about all the things I could have and should have said. The huge things I completely overlooked because they have been my normal for so long. It’s impossible to recollect every detail of your life on-the-spot in one single high-intensity phone interrogation. I regret not recording the call so that I could process everything that happened, but my foggy memory will have to do. I’m finding my daily fight is now ten times harder because I’m carrying all the shameful thoughts this assessment has dumped on me, questioning my self-worth and wondering more than ever if there’s any reason to stick around for the future.
I really want to write to the assessor and make her aware of how worthless she personally made a fellow human being feel. To make her realise that treating people like dirt when they ask for help is not progressive, and that this is not an effective way of filtering out the time wasters. At the end of the day, empathy and compassion don’t cost anything.
You can read the follow-up to this post here.