We’re (not) working on it. The council website lies on their behalf.


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“We’re ignoring it.”

It’s nearly seven months since I began the process of applying for housing through my local council and the progress is laughable. Every few days since the start of March I’ve logged into my council account online to check what’s going on with the multiple documents I was made to upload. “We’re working on it”, says the automatic reply. (Remember, I’m applying because I am being evicted and need wheelchair accessible accommodation.)
I tried calling, no I couldn’t talk to anyone because I haven’t been approved yet therefore I don’t have a case worker to talk to. Kafkaesque.
My mental health team’s social worker refused to call on my behalf “because they never pick up”, so that was the end of that route of advocacy.
My friend, however, did manage to get through. I’m in a better position than most “vulnerable people” applying for housing through this ridiculous system, in that I have a number of friends working in relevant sectors – charities, housing groups etc.- and one of those friends got so frustrated on my behalf that they called the council, explained what their job was, and was forceful enough that the council called me back the same day. I should be hearing from a case worker sometime in the next fortnight, though obviously I’m not holding my breath.

It turns out my application has been sitting in some virtual in-tray in a virtual office that no one occupied and had been since January. “We’re working on it” was some placating notice generated automatically as soon as uploads had been received, whether anyone was actually “working on it” or not. [This was further proven when I tried to apply for a taxicard at the start of this month. I got an email receipt saying they aimed to have it done within two working days; it’s been over two weeks now and, yes, they’re still “working on it”. The good news is I can actually call the concessionary travel department on  my own behalf and talk to a human.] I’m starting to believe that council employees aren’t taught how to work the new online system, because that would mean they have to at least try to help as many people as apply for services.

So what now? Now I wait for the phone call from the case worker and try my best not to slip into serious depression over this ridiculous housing situation again. It’s coming in waves, but I’m almost getting used to it.


The General Election is this Thursday – let’s Crip The Vote!


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Crip The Vote emerged as a digital movement in the first half of 2016 in the United States, and was an active voice leading up to the Presidential election that November. As noted by its founders, disabled people are America’s (and the world’s) largest minority group, but a group whose voice often goes unheard in politics, even on topics which directly affect them such as healthcare, and social services. From its origin as a hashtag on Twitter, it became a movement that spread across the internet and invited disabled voters to participate in grassroots discourse about how they could become more involved in politics and the electoral process. As the disabled community online crosses continental borders, it was only natural that once the General Election was announced on the 18th of April, #CripTheVoteUK soon followed.

It seems incredulous that a movement is necessary to point out where access improvements are needed, but that is part of what Crip The Vote does. This ranges from ensuring polling stations have full disabled access, to pressuring political parties to release their manifestos in all possible formats including BSL and SSE (Signed Supported English), large print, braille, and simplified English. The latter is thankfully becoming more common since Mencap’s campaign to include people with learning disabilities in politics. Some parties fare better than others at inclusion- the Conservative Party released their BSL manifesto too late for postal voters to see it this year.

Inevitably, a large part of the movement is based on drawing attention to parties’ policies which affect the disabled community, and urging people to vote accordingly. For that reason,  many of those participating in #CripTheVoteUK are committed to ousting the Tories who have caused unrelenting misery for disabled people in the UK since 2010 – be it from increasingly unfair ATOS or Maximus assessments, cuts to Legal Aid, NHS service cuts, cuts to disability benefits – disabled people have borne the brunt of the cuts made to keep our economy afloat, while the richest pay minimal tax and hide their money in offshore accounts. (By contrast, Jeremy Corbyn has repeatedly voted against benefit cuts, against the bedroom tax, and for increasing benefits in line with inflation – oh, and making millionaires pay their taxes!) Disabled people in the UK are literally dying from starvation, illnesses worsened by stress and poverty, even suicide after benefit errors, going without care hours when reclassified as being in less need, even being denied the wheelchairs that would help them engage in the community by the NHS who have been told to save money by tightening the eligibility criteria. We are being shat on from all sides, and we are sick of it. That is why Crip The Vote is so important; it gives us some agency back.

It’s hard to write a vaguely objective piece when it directly affects you so much, which is why somewhere in the last paragraph I dropped the formality. I’m not a journalist, I’m a blogger at most, but one who hopes that what they write might one day make a difference. So I’m starting here:
Abled Britons, non-disabled citizens, please read this warning. A vote for the Tories is a gamble, a bet that during a Tory government neither you nor anyone in your close family will become sick or disabled. As long as you remain in a stable job with a good wage, as long as your house remains standing, they have your interests at heart. Once the bricks start crumbling, once you get weaker, once you need to leave that good job to look after a spouse or child, they will not help you. They will punish you for a situation that was not your fault, make you feel as if just surviving another day is political dissent. At times the only thing that has kept me alive is knowing that I do not want to become another statistic, have my death called a “tragedy” by politicians who voted for me to have a harder life. I know my own experience is mirrored by many of my disabled comrades, and I also know it doesn’t have to be like this. This is why we are Cripping The Vote.

(If you want to vote tactically in your constituency to give your local Tory candidate less of a chance, you can check who you should be voting for on this handy website.)


Lost Days – A Post About Hypomania


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[For Mental Health Awareness Week here in the UK, I thought I’d write about something less obviously damaging to those who don’t have to deal with it.]

Like many people with mood disorders, I have marked periods of ups and downs. While it’s true that at the outset, the ups are fun and the downs are terrible, things aren’t so black and white in reality. My own extreme moods tend to last for days or weeks, but some people, such as my aunt who has bipolar disorder, can spend months in such a state – when she is “high” she needs to be hospitalised and have her medication adjusted,  not just to level her mood, but to cushion her as much as possible for when the inevitable rebound low comes. I’m lucky that my own periods of extreme mood are far shorter and with longer periods of relative stability in between,  but my hypomania (as opposed to the full-blown mania suffered by my aunt) still leaves a trail of destruction – money spent, hours thrown into projects I will never complete (or even understand) afterwards, and the inevitable mental fallout… let me give you a typical example, which happened last month:

One day in the middle of April, I received two pieces of good news about my disability activism. I quickly made a happy Facebook post, and enjoyed telling a few friends specific details. Hours later, I was still bouncing with excitement. My mind was making up endless scenarios that could come from this news, leaving me unable to concentrate on anything. I definitely didn’t feel like sleeping, so I didn’t. I stayed up and wrote more. I read Wikipedia before going to sleep for a few hours around 9am the next day. That afternoon I got up, and went on the internet, but I didn’t feel productive and excited any more, I felt uncomfortable and jittery, like I’d had too much coffee. I opened tab after tab “to read later”,  because I couldn’t concentrate. I talked a lot, to myself. The phone calls I was supposed to make were never done, because I felt too anxious to talk on the phone, too anxious even to read all the tabs I kept opening. After staying up all night because I was too scared to sleep when it was dark outside, I took some melatonin in the late morning. Later that 3rd day, I got up and dressed and went across London to see a friend. I felt much calmer due to the groggy after-effects of the melatonin, but when our conversation touched on certain things, I became overexcited and then angry at myself for being so.  Five days after it started, the hypomania fully tapered off and I was on a fairly even keel again, but left feeling disorientated as if I’d been away for weeks and was panicked about what I had left un-done in those few days. The heightened anxiety took a bit longer to abate.

Last month’s hypomanic episode only left me with extra calls on my to-do list, a week of emails in my inbox, and 24 open Wikipedia tabs to read, but there have been much worse repercussions – like a relationship I knew I shouldn’t have entered into. When I lived in France as part of my degree course a few years ago, I got a bit depressed in the last months as I was quite lonely. I started talking to a guy online in London, and the prospect of meeting him made me really excited to be home again. TOO excited. If I had not been so high, I might have considered it a very bad idea to get into a relationship with someone with a serious eating disorder (and in serious denial about it) as well as grandiose ideas about creativity to match my own at the time. But I was high, so at first we were MAGICAL! We made joint art projects, took photographs on London rooftops at 6am, made up songs and sang them in comedy clubs…I felt like together we could change the world (to be honest, that should have been a warning sign). It was a rough ride as I slowly tumbled back to earth, and the thread of anxiety running through our whole relationship started to entangle me, leading to self-harm, self-hatred and self-doubt. Even though that lengthy hypomanic phase introduced me to one thing I still enjoy (comedy performance), it also brought me to the end of my overdraft and left me with the fallout from having been encouraged to diet and to reduce my medications by someone I had idolised. The subsequent depressive episode was the worst I’ve ever experienced, although it was about 5 months until it appeared. Whether its severity related to the long high or not I don’t know, but it felt like I’d fallen miles into the ground after being high above the world for so long.

I often find it hard to tell whether my mood is changing to the extreme. Like last month, a hypomanic episode might start out as excitement, then before I know it it’s taken over and all I can do is ride it out. Hypomania isn’t just “being too happy”, other emotions are heightened – anxiety, annoyance, and impatience are the ones I find also get turned up. Although I’m still working out how to spot warning signs, I am aware of one definite trigger for my own highs, and that is music. I love music – doesn’t everyone? It’s been a huge part of my life ever since someone shoved a tiny violin into my hands when I was 4 years old. These days I tend to listen more than I play, but I’ve learnt to be careful what I listen to. Too much of a favourite band, or a particular album, might set me off and I’ll spend the whole night listening to music, maybe ranking different versions of songs, or analysing scores and lyrics for comparison, as if searching to prove a scientific theory. One night I made several friends listen to “Maria” from West Side Story then Tchaikovsky’s Romeo & Juliet Fantasy Overture to prove to them that Bernstein had used a motif from the earlier piece as inspiration for one cadence within the later song’s chorus. Even if you don’t know music terminology you’ll recognise that that is obsessive behaviour, and that’s something that I often fail to spot in myself until I am too high to come down again – usually I don’t realise I’m in a hypomanic phase until I’m tired and anxious and unable to calm myself (plus stopping to think “Wait, am I high?” before embarking on a project can be somewhat creatively stifling). However, with the help of my partner, who has learnt to spot the warning signs, and friends who have had to learn not to encourage my music-based ramblings, I am slowly becoming better both at managing hypomania, and at nurturing my creativity in a safer manner.

My wheelchair is not a prison!


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Since becoming visibly disabled in 2013, after several years in the invisible camp, I have been anxious about seeing people I used to know, and meeting new people. Not just the inevitable “what happened?” (answer: “technically nothing, I was born with this”), but the misguided sympathy I now get for being a wheelchair user. Non-disabled people tend to see the wheelchair as The Worst Thing That Could Ever Happen to someone – look at the terminology used: wheelchair-bound; stuck in a chair; confined to a wheelchair…. but they don’t think of the alternative. Before I had my electric wheelchair, I would leave the house once or twice a week, as it caused me that much pain to walk and the knock on effects weren’t worth it. Now, as long as I’m not in a bad fatigue phase, and can get what passes for “dressed” enough, I can go out multiple days in a row with only minor consequences.  Without their wheelchairs, tens of thousands of people in this country would have no access to education, work, or a life outside of their homes.
The futon is my prison, and the wheelchair is my freedom and my best friend.
I will admit to getting a bit (extra) depressed from time to time because I miss being able to do the things I used to love – dancing, climbing, scrambling, hiking (basically anything involving going up mountains), kayaking – but what people often fail to understand is that even if I didn’t need my wheelchair, or the crutches I sometimes use, I wouldn’t be able to do these things anymore anyway. The wheelchair is not the symptom of my condition or my limitations, it is the thing that helps me continue to do what I have left. So don’t aim your sympathy at my wheelchair -maybe channel it into anger at the lack of wheelchair access I and other disabled people face instead!

Six Wasted Weeks


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(CONTENT WARNING: suicidality mentioned, eating disorders, mental health, unreliable therapists, sleepless rambling)

One day I want to write a post about the housing saga and have it be a POSITIVE one. I really do. Today is not that day.
It’s been 6 weeks since the hospital’s crisis team discharged me back to my regular department. During that handover meeting, my key worker (who I was meeting for the first time) promised me she’d set up a meeting for me and the team’s social worker with the aims of helping me navigate the council’s housing system without such a catastrophic effect on my mental health. The kind that saw a return of bulimic behaviours I haven’t had in 10 years. The kind that had me shaking and sleepless and suicidal in my GP’s office on a Saturday morning three days beforehand, with no idea where else to go to try and get help, desperate to stop myself from doing anything reckless. (Actively trying to prevent the loudest 20% of your mind from taking over the anxious insecure majority is a strange feeling.)
I went home feeling like the cork was just about jammed back into the bottle, aware that it would be very dangerous to let the pressure build back up again.

So, since then I’ve waited. For six weeks. In the meantime having no luck with my other housing options (see previous post). Mental health up and down, nothing as bad as it was when the crisis team had to get involved, because of the aforementioned cork keeping my distress gently bubbling away on the inside. Literally holding out for the help I was promised.

Today I left a voicemail with my key worker, chasing this up. Two hours later the social worker called. “K has just told me about your situation….”
I had to ask her if she meant “…for the very first time”. Yep –  Just. Told. Her. 
If I hadn’t called, how long could I have been waiting for this meeting? I have a horrid feeling the answer would have been indefinitely.
If I wasn’t so tired I’d be absolutely furious. I AM absolutely furious, but the tiredness means it’s coming out as defeatist sighs and the frantic need to write this all down before I fall asleep at the laptop.
I’m pretty sad too, though. I don’t find it easy to trust people, psych professionals even less than most, and I’ve already lost a huge amount of trust in my new key worker. I know that mental health services are getting cuts all over the place, everyone’s so busy and overworked, and she probably genuinely forgot. The problem is there’s a human impact on the other side of the safety glass. My life can’t be put on hold right now – I’ve wasted 6 weeks waiting, and my provisional deadline to move is now a month away.

The social worker said she would text me some potential meeting dates. I’m not letting myself hold out much hope of that without another prompting phone call. I’m also very glad that anxiety over being forgotten about is overriding anxiety about making phone calls right now.

(Lack of) Housing progress.


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Just over two weeks ago I posted a tweet asking for help finding accessible rental accommodation in London. It was retweeted over 240 times, and garnered no replies.
This isn’t a damning verdict of community spirit – it’s a damning indictment of the lack of actually accessible properties on the rental market, and subsequently why, 6 weeks after beginning my housing search due to impending eviction, I have made exactly zero progress.

In terms of looking for private market property, I have used every website I can find. First off, I tried the site which has ostensibly taken over for the Accessible Housing Register, which currently lists a grand total of ZERO accessible properties available to rent inn the UK. So, onto the non-specialist sites. Disappointingly, NONE of them have any filters for accessibility – even dssmove.co.uk, which lists only properties which accept housing benefit – which means I have to search for listings mentioning “wheelchair” and see what comes up (usually not much). (Searching  for “accessible” will bring up red herrings as it is often used in context of local transport.)  Another method is to look for buildings with lifts, or ground floor flats only, but again there is no guarantee that this means they are wheelchair accessible. I have sent a multitude of messages to property agents about places on the market – checking either DSS allowance for those which are accessible, or wheelchair access for those which do accept DSS, or both – and the few replies I have had so far have been negative. I have, however, been signed up to numerous unsolicited mailing lists.

On the non-private rental side of things, progress has stalled. The meeting with my key worker at the Personality Disorder service, in which she promised to put me in touch with the department’s social worker to help me navigate the council, was over a month ago and since then I’ve heard nothing either by phone or post. I went to the middle-of-nowhere hell that is Enfield Council’s housing department and gave them my doctor’s note, so hopefully they won’t discard my application in the meantime. My other option is a specialist Housing Association. The only one I’ve contacted and heard back from is Habinteg- I was accepted onto their waiting list last year, when my housing situation was simply “undesirable” and not “6 weeks away from eviction deadline”. It took me a while to build up the nerve to contact them, by phone, and I was told to email them instead. That took me over a week, the anxiety of response made worse by the disinterested person on the other end of the phone. Then I got this back:


[Good Morning,
Thank you for your email.
As stated in our Lettings Policy, we are unable to state accurately when we shall be able to help you, but I do assure you that your application will be given full consideration when suitable vacancies occur in the future.
Any information provided to support your application will help us to determine your priority of need in terms of housing, as we allocate properties on the basis of priority of  need, applicants do not move up the list,  and we are not able to guarantee to be able to offer properties to all applicants that have been added to our listings.

No contact name given, not even a mention of my name. I am pretty sure I was given a template response. I’m not even sure anyone read my original email stating I was facing an eviction deadline. After another few days of fretting, I’ve sent a copy of the eviction notice but I don’t expect more than another pithy email possibly telling me that it was insufficient evidence. I’m trying not to get utterly depressed at the probable loss of what was, at the start of this anxious period of my anxious life, my best hope at being suitably housed.

Update 21/02 – I have received an email from Habinteg informing me that my emails and evidence have now been forwarded to a Housing Officer. Whether or not this is so they can tell me the same thing, I’m not sure.

As the days count down to the provisional deadline of March 31st, my mental health is piping up again. Last night I had the first seizure I’ve suffered this year, and the first in at least a few months. I’ve begun dreading the evenings and nights again, in case of the Sudden Desperate Sads which lead easily to desperation, dissociation, or worse. I’m waking up anxious, staying anxious, until it turns to depression as the day wears on. I know this is when I should be calling the PD service key worker, but the lack of contact I’ve had from them since the Crisis Week means I’m incredibly anxious about doing so.

And breathe…(for a minute)


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My PIP assessment results arrived over the weekend. I’ve been awarded higher rate care component (as before), but also higher rate mobility. This is the part that enables disabled people to lease adapted cars, if they wish. Right now neither C nor I can drive so I won’t be using it for that, but the extra money will definitely be helpful right now. It came as a massive surprise – I was expecting to get nothing for mobility again because I can walk a small amount with crutches. Is this the one time they took “safely, repeatedly, reliably” into account?
Also, amazingly, I don’t have to be reassessed until 2020. That’s almost four years of not panicking over it, unless someone reports me because they saw me standing up from my wheelchair. I don’t trust the abled public not to be vindictive arseholes almost as much as I don’t trust the DWP not to send letters to terrify us just for shits and giggles.

And that’s the good news.

The other sort-of-good news is that I filled in the Council’s homelessness help form and I “may qualify for help”. Heartening. Now I have the next form to fill out, which I’ve already done (albeit before being given an eviction date), and it’s coming up on a year since they received it and I’ve still not heard back…hmm. Hopefully they’ll let me submit another one.

In other trying-to-prevent homelessness stuff, I’ve been looking on various websites for places to rent (with housing benefit) and one thing is standing out to me: nowhere, including dssmove.co.uk, which specialises in properties which accept housing benefit, has an option to search for wheelchair accessible properties. I did find a website claiming to list all accessible properties available to rent or buy in the UK but when I checked yesterday they had precisely 0 properties that met my conditions (to rent, in UK).

Other things:

  • My therapist has left the CMHT, which would be sad if I’d heard from him at all (aside from his farewell voicemail) since September. Still no word on when BPD group sessions start, so chances are I’ll have moved out of the catchment area by the time that happens.
  • Still no joy getting a gut specialist appointment because I need to submit a stool sample first in case my obvious gastroparesis turns out to be H Pylori (hint: it isn’t). Trying to produce a stool sample with gut dysmotility and a stomach that won’t empty, at the right time of the morning to rush it down to the GP’s surgery… let’s just say it’s been *months* and it hasn’t happened. I asked my GP for a blood test instead and the hospital threw it away as they “only test stool samples”, and breath tests are only done on inpatients. Hell’s bells…
  • It’s still my job to keep calling Stanmore and finding out whether they have reopened the waiting list for the pain rehab program.
  • New GP seems fairly disinterested in helping me to find an accessible dentist or referring me to the hospital’s community dental clinic. Must push.
  • Occasional suicidal ideation, mostly when I think about being placed in temporary housing – specifically B&B/hostel type places like when I was homeless at 17. I remember the fear and the desperation, and my brain goes “better kill yourself before it happens again”. No brain, stop it.

I’m using a lot of distractions this week. Mostly Poirot.


Game Face


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“I don’t think I can have you stay in my flat any longer. I want you gone within three months.” And with that announcement, delivered three days after Christmas, my father broke into a smile.
“There. Now I have that off my chest we can get on with enjoying the holiday.”

And remarkably, he has. Ever since dropping that bombshell on me over breakfast on the 28th, he has been eerily pleasant as if the idea had been pressing on his mind and now he had said it out loud it was no longer there. It’s crushing me, instead.

I wish I could say I was new to being thrown out by my parents. The fact is I ended up at my dad’s when my mum threw me out in early 2014. Before that we have to go back to 2003, age 17, when I wasn’t thrown out but more “had to leave” my dad’s flat for legal reasons – two years after my mum sent me to live with him when dealing with a suicidal teenager became too much of a hassle for her. After a period of homelessness and hospitalisation, I got my own flat in 2004, and stayed a tenant of a supported housing agency until I gave it up (and all the disability benefits too) to go to university. Although I knew my mental health was precarious, I had no idea at that point that I also had a genetic disorder affecting my connective tissue, and that within 8 years I would be a wheelchair user, unable to work, and back living at my dad’s because I couldn’t get an income.

 I have no idea how long he’s wanted to throw me out for. Periodically he’s complained that I’m not making an effort to find accommodation, to which I point out that I’m still waiting to hear back from the council – that private accessible accommodation that accepts housing benefit is hard to find is a gross understatement. Truthfully, my plan was to wait until I heard back from my last PIP assessment – firstly so I knew if I would be able to afford the move, and secondly (and more importantly) so I would not have to deal with two major stressors at once. Dealing with one thing at a time is how I manage my mental health. If I try to take on too much at once, it can go very badly. But he’s forced my hand here. I have to find somewhere to live before the end of March, even if I have to take my PIP claim to appeal again.

He’s always been very territorial about his flat. Despite my living there as a teen, it was always HIS. He resented that it was to his flat that my boxes would come back to when moving to uni, moving abroad, moving back in. He resents more when I get too comfortable. And heaven forbid I let my mother in….. part of me feels that my offhand comment on Boxing Day about mum “popping round” in the new year may have been the straw that broke the camel’s back. He’s expressed discomfort with my familiarity with the flat before. The few non-fixed adaptations and equipment prescribed by the council’s occupational therapist have mostly been consigned to the conservatory. He doesn’t want a cleaner in HIS flat (despite never being there to clean it himself). The powerchair in the hall is tolerated, although the wheelchair ramp, which I negotiated long and hard for, is considered a symbol of my “settling in”. Ironic, since it’s the thing which enables me to LEAVE the flat most of the time. Essentially, I’ve always known my residence would be temporary. I’ve been reminded constantly.

So, having had two days to take it in, I’m feeling relatively calm. Enforced calmness was necessary to avoid a stress induced breakdown 4 hours from home where all my information is, in a house where the internet is unreliable at best and any supportive family had left the day before. I had my necessary cry, and my small rage, and then I put on my grown up face and asked him to please give me a letter for the council stating intention of eviction by the end of next week. With luck, common sense will overrule spite and he won’t say I have made myself “voluntarily homeless” as he’s been threatening to. I’m not sure it would stand anyway, since I’m not a tenant and there was no contract for me to break the terms of.

In the coming weeks/months I will be blogging about my search to find a new home, and probably also drawing parallels with my experiences at 17 which so far I haven’t had the guts to because of associated PTSD. This is going to bring those memories bubbling to the surface though, so writing them out will be one way to take control. 

So. Let’s find an accessible place in London that also accepts housing benefit. Game face: on.

Dirty Tricks

I came home from 12 days in Chicago to the inevitable brown envelope: my PIP assessment is on November 23rd. That’s under a month after I sent the forms off. Last time it was an 8 month wait so I’m impressed at the speed. However I learnt two somewhat disturbing things from the phone call I made afterwards:

1. In August they quietly “ended the trial” of pre-paying cabs for claimants who needed them to get to their assessment. Instead they now pre-approve claimants for reimbursement and pay them back up to two weeks after the assessment. This means that claimants who cannot afford the return trip in the first place (which would be about £60 in my case for example) are at a distinct disadvantage. Remember that “how did you get here today?” is a commonly asked question to those with reported mobility problems, and taking public transport to the assessment can count against anyone who has claimed they have problems with public transport – even if there is no other way for them to GET to the assessment!

2. I asked if I could have my assessment recorded, after last time when the assessor might as well have written down the opposite of what I said. It turns out they now ask claimants to bring their own recording equipment – good because they can’t now say “sorry we don’t have enough”, but bad because it has to be a very specific type of recording device (dual tape or CD recorder) which most people will not have or many be able to afford. They do not accept any kind of digital recording, as both parties have to have a physical copy of the recording by the end of the assessment. A quick Amazon search shows that dual tape recording devices are not readily available, and definitely not cheap. By insisting that claimants use equipment used primarily in police and court situations, Atos are ensuring that a minimal number of assessments are recorded using a method usable in an appeal. (A covert digital recording would be fine for a claimant to personally review what had happened, but that is all.) One easier to find alternative to the double-tape recorder is to procure two identical single recorders, but again for most people this will come at a cost.


I knew already that the odds were stacked against the claimant, but these extra costs and tricks make it extra unfair.

PIP – my recurring nightmare


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Sunday night, late September

Well, it was a blissful four months without any DWP contact at all. A glorious summer devoid of this specific anxiety, along with the harsh, tinny compressed tones of the Four Seasons that inevitably accompany it (due to Vivaldi-specific PTSD, I will never listen to that piece for pleasure again). It was also a summer of drastically worsening illness, in terms of fatigue and autonomic dysfunction, but also, paradoxically, much improved mobility as my powerchair arrived in June.

Now summer is over. The brown envelope arrived the day after our return from our late holiday in Vienna. The timing couldn’t have been more symbolic.
Your PIP runs out on December 17th. Please reapply.
I knew I would be facing reassessment this year, even though I only received my first payment in January. I knew I’d only get a year. But I didn’t realise that I would have to fully reapply, not renew. This has sent me into something of a mental spiral, remembering all the stress, anxiety, extra dissociative episodes which occurred while trying to complete the original form – and realising that I will probably have to do this all over again – perhaps only to be told that I don’t qualify after all and that I will have to go through another appeals process.

It’s past 5 in the morning. I’m too anxious to sleep even though tomorrow is only the phonecall to clear up the renewal/reapplication confusion. My brain kittens figure it never hurts to panic early.

Monday evening, mid-October

The forms have arrived. It took me over a week to summon the courage to call the number and wait on hold through 40 minutes of pain and intrusive noise last month. I asked about reapplication vs renewal, and got told that whatever was on the letter I was sent, that’s what to do. So starting again it is. The deadline is November 7th, so I doubt I will be assessed in what remains of 2016 (last time I waited 7 months from sending the application to the initial assessment).
This means that I will lose almost £62 a week from December when my PIP runs out, until it  is (potentially) reinstated, as the Severe Disability Premium added onto my ESA is reliant on my getting PIP. It’s almost like they expect me to fail.

We’re doing the forms tomorrow evening, using the ones from 2014 as reference. I know that a worsened condition (both physical and mental) gives me no guarantee that I’ll get the points to reflect this. Cynically, I think it would be a miracle if I even matched last year’s results (Enhanced rate care; nothing for mobility). I had to go to a tribunal to get that. I’m not sure I can deal with another year of my life essentially put on hold so I can ensure I have the support I need. It’s a bloody grotesque system.