As it happened, the ‘dreaded PIP brown envelope’ never arrived.
It was white, innocuous, mixed in with pizza and conservatory leaflets, but I immediately knew what it was.
The DWP has invited itself to my house in less than two weeks, despite me not requesting a home visit. How … lovely.
At the appointed hour, they will assess whether I do indeed have an incurable, degenerative illness. With this hour-long meeting, they will decide my future – should I be allowed to continue to live and work in genteel poverty or should I be rendered unable to pay my bills and therefore become homeless?
I knew an assessment was coming, I just wasn’t prepared for it to be at home.
My house is my sanctuary and comfort, from everything. Every single item I have here is precious and the last thing I want is some hawk-eyed official casting their penetrating gaze over … my life?
To be honest, it will feel like an utter invasion. The last person I had here in a professional capacity was my lovely MS nurse, back in 2012, and I welcomed her in with open arms. An as-yet unnamed official (they discard such niceties when you’re ‘claiming benefits’), will be uncomfortable and invasive to say the least.
And that’s what it feels like – an intrusion into my personal space. Is there anywhere they won’t go? I have described, in excruciatingly personal detail, every area of my life. Things I wouldn’t tell my closest friends. Things I can barely come to terms with myself. Every tiny little detail of every single thing I cannot do. Or do, without wanting to.
Back in 2011, I could not know that embarking upon the MS diagnosis-journey would mean baring my soul, my brain and to top it all, my entire life. And that’s without the relapses, the gruelling treatment, its side-effects and the ongoing symptoms and medication.
Yet I have no choice. My quiet, unassuming, boring life could be ended in an instant.
And I quite like my unassuming, boring life.
You have my utmost sympathy. I too have brown (and now white!) envelope neurosis. I too am awaiting an administrative cure.
On Linked-In I was approached by a recruiter to work “for a progressive and cutting-edge employer with exceptional standards” to do disability assessments as part of the roll out of PIP. Whilst I was exploring what this was about i mentioned my wife was doing a return to nursing course.
They approached me despite my LinkedIn page having MY cartoons about the issue attacking both ATOS and Maximus. Despite my having been retired with MS for nearly fifteen years.
This is my reply.
“I’m sorry, but with the greatest respect I would not in good conscience as a disabled person be able to bring myself to work for this oppressive and cruel system. The “work” that such assessors do is inherently biased toward making life harder for people whose only offense is to have become disabled. The system within which they work is deliberately tailored to further marginalise the sick and disabled people, playing into the scrounger narrative beloved of the print media. It is a system of assessments which has made life miserable for many many people and has been directly responsible for the deaths of far too many people like me. The role for which you are recruiting would, in any truly civilised society, be considered criminal at best.
Neither my wife nor myself as people or professionals, are interested in being part of this politically motivated and oppressive system.”
The only reply I got was thank you.
Thank you so much!! What a brilliant reply And I absolutely love the reply you gave. Huge respect!!
I think you laid your points out fairly and I cannot see how they would disagree with them, but sadly they do.
I hate to say this again, but #meToo. Day after tomorrow. At home. Trying to work out how tidy I should or shouldn’t be, whether I leave my walking aids and stairlift catalogues lying around ostentatiously or not, whether to offer tea if I can’t actually make it, whether to refuse to comply with requests to move and bend and stretch, whether to show off my new scars, whether to walk to the front door. My big worry is that a lot of ex-colleagues now work for the firm doing the assessments. What if it’s one of them? Would that be good or bad? This process is miserable.
It’s beyond miserable – like you say, what to leave in as a basic snapshot of your life? It’s totally unrepresentative.
I really hope it goes well for you! X
Great PIP news. Capita phoned the night before, cancelling appointment as assessor is off sick. Relieved in many ways. Just waiting to see how much anxiety I can generate before the next one.
That’s incredibly frustrating 🙁 I’ve been warned they’re a nightmare for that, and also just not turning up at all. Imagine if we did that!! x
You are worrying too much.
They will go over what you put in application, and ask questions.
If you have crutches use them, don’t offer to make tea ? you have to show your worst day, even abt loo or any mishaps even having to sleep downstairs. Above all be brave, ask a friend round to do little job for you. X
Thanks David! I just really hate the idea of being assessed in my own house. Like being put on trial or something! X
I will just point out at my face to face at home, it was noted that I could pick up a piece of paper and move it along with my phone , which was at the side of me on the sofa.
I could also respond verbally to questions, make eye contact with the assessor and was able to smile !
I could stand and manage to get to the toilet without aid from another person, holding on to furniture and walls and wipe my own bottom !
I can feed myself, wash myself and breathe unaided.
So all in all, ‘I’m fine’ – i rest my case ?
That’s awful 🙁 I’ve heard so many horror stories like these. A one-hour snapshot is no way to assess a whole life with a disability. It’s just shocking. X
Jeez that’s bloody scary . Really good luck . Hope it goes in your favour ?? x
Thank you so much! X
I have been with you since your shiftms days and admire you greatly. I was assessed at home by capita it’s not too bad. Have somebody there to answer the door and do not move from your chair! I am also in South Wales by the way.All the best to you my brave girl! Xx
Hello and thank you so much!
That’s really reassuring to hear 🙂 Still driving myself potty thinking about it. Fingers crossed I get the same person as you!!
The problem with not willingly standing and moving if you are able, is that it is not representative of what you can do, even if it’s not all the time. You’re medical team can obviously fill them in on what you can and can’t do.
I am no longer able to work but do go out occasionally and am able to drive very short distances on a ‘good’ day and park directly outside – e.g. doctors. So if you are able to go out unaided at times and physically function and can walk 20 metres even with difficulty I have found you just don’t qualify ?
The problem I had as well was that I was asked set questions and they were unwilling to deviate from the script, so when I tried to put my experiences across they just weren’t interested.
Just be mindful of that. Saying that though they were with me well over an hour.
Hoping you get a ‘good’ one xx
Thank you! I guess it’s about them trying to shoehorn every single disabled people in to one mass-produced tick-box form 🙁 X
MS is such a difficult illness, especially as it can fluctuate so wildly. The only thing that doesn’t change for me is that I’m pretty useless after 2pm unless I have a huge amount of sleep and probably the day off work.
These assessors are more than likely not to have a great understanding of MS 🙁 So the odds are already stacked against us. X