(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.
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:
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.
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).
- 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.
I have had the same few items languishing on my to-do list for 2 months. I just scored one of them off by emailing in a complaint to the CMHT exec. In a way, I think it might have been easier had it been a phone call. Anyway, I finally did it.
In March I called the home crisis team number I’d been given for emergencies. It didn’t go well….
To whom it may concern,
Late on Saturday March 12th, I had a dissociative episode, and worrying that it would get worse and I would hurt myself, I called the circled number. Due to my anxiety,and especially compounded when dissociating, I am not great on the phone. The person who answered it (I can’t remember if they gave a name, but they were female) kept mishearing me or misunderstanding me, which made my dissociation worse (at one point she seemed to think I had children, and asked if they were safe). After a frustrating attempt to describe dissociative symptoms while dissociating, during which I was accused of not cooperating because I said I wasn’t feeling anything, I asked to see someone from the crisis team. It was then I learnt, for the first time, that in order to actually see one of the team, a “service user” must be pre-referred for community support, so all I could have was the phone call, which was making me feel worse. (In the end I hung up because I was scared it would push me past being able to recover that night.)
My complaint is that at no time before I needed to use the Home Treatment Team was I told that I needed to be pre-referred before I would qualify for home visits. Since a “service user” is unlikely to call a crisis number unless they are actually in acute crisis, this seems like a very risky policy. In my case, it made my acute mental health crisis worse to find that out after being further agitated by invasive questioning and allegations during the phone call.
I had two weeks of breathing easily, knowing I had all I was entitled to.
Two weeks of planning for the future, and not fretting for it instead.
Two weeks of optimism. Two weeks of happiness.
That’s all I got.
It took me 16 months after applying to get my ESA and PIP approved, the latter through a gruelling appeals process. It took another 5 months to convince the DWP that I was eligible for Severe Disability Premium so I could afford to pay for my own care. That fight took more energy than I thought I could ever muster; it could have mentally broken anyone, even if, like me, they didn’t already have serious mental health problems.
Then on Monday I got a letter. The brown envelope.
My rate of ESA is changing in December. Dropping drastically.
A phone call cleared it up:
I am being reassessed for PIP before December 17th, which Severe Disability Premium relies upon me receiving. So they will be taking it away pre-emptively, because they’re so confident they won’t need to reinstate it when I fail to cling onto the desperately needed PIP points. (It’s not even worth noting that my illness is incurable and progressive, is it?)
And just like that, my brief respite is over. My week has been punctuated with crying fits, temper, feelings of hopelessness. I am so scared that the remaining seven months of this year will go much the same as those sixteen limbo months, full of dread, apprehension, self-loathing and despair. I would have dearly loved a longer period of time without this hanging over me.
One week ago I was starting to prepare for the accessible-home-hunt, as things in my family home (which I was only ever supposed to be in very temporarily) are deteriorating. Now I can’t do it- not if there’s a chance I’ll lose PIP, and the Severe Disablement Premium with it. If that happens I’d have to move out again and back to here and that would take more energy and self-esteem than I could ever afford to give.