Outcomes, assessments and alienation

(As always, I reserve the right to delete this because it is a slanderous rant, but if you can't do that in a blog, then where can you?) ;)

I need to type here some angry thoughts about the complete fiasco that has been J's social care assessment and my carer's assessment by Social Services (edit: DWP). Although the ball has been rolling for a few weeks with regards to J being granted money to pay a personal assistant for weekly help (after most of a year of delays, hospital admissions and several telephone complaints), her forms are filled in with upsetting inaccuracies and distortions. Simple things like her challenging her BPD diagnosis and listing other conditions (OCD, eating disorder, depression etc) has been skewed into her appearing to lie to professionals about her diagnosis. This is fundamental stuff. These are supposed to be J's words with supplementary information from her professionals (remember that she hasn't had a regular shrink for four years, just a chain of anonymous locum doctors reading rushed short hand from the local Crisis Team and ward staff). That's just the start. But first, let's talk about me ...

Apparently, since I don't live with her, I did not qualify for any assistance (which I sort of expected, although I've lived at her house for most of the last two years, but why make me fill in the forms?) ; apart from £200 a year, for which I had to justify what I was going to spend it on (naturally). I pointed out that the mobile phone contract I have is essential for keeping us both connected in emergencies, when she is in hospital and so on, but apparently the DSS don't pay for such things and I was then expected, with no clues or example given, to come up with something more plausible. Maybe they wanted me to say "respite weekend abseiling" or something from a disability holiday brochure. I just don't know. If you don't specify, you don't get, apparently.

We weren't even given any leaflets introducing the assessments - because, apparently, the system has been changing so much that all info is out of date. (Isn't this always the case?) They offered me help with DIY and "finding work" - which was a misunderstanding about me not looking after my flat because I'm always with J and that I was looking for part time work for extra funds, but the way they phrase everything is so dehumanising. Apparently I did qualify for help from the Inclusion Support Service - possibly the most redundant and misguided of all the local teams (although not entirely their own fault, but their sole purpose seem to be to get people to join clubs and go to day centres, or to get them out of day centres - oh, the irony, because I used to meet with them in my old job when they'd introduce new service users to the mental health drop-ins). So many of these not-quite social worker roles can replaced with a Google search of local events and a bus pass for the client. Not to mention the fact that Inclusion policy is one of the most abused and misused ideas, implemented by councils to rapidly shut down any ongoing stable support people already have. It was a high point when the social worker mentioned ISS. I think we all laughed for a whole minute, and the social worker knew why.

We were both in an exposed position (having confessed to a mistrust of most professionals based upon experience of their prejudices and neglect). J was nervous about qualifying for care and how many hours of help that would cover.

J then suddenly started to express anxiety about finances and that she was worried about my own stress levels. You'd think that would help our case, i.e. vulnerable MH outpatient and her carer "at the end of tether" physically, emotionally etc. Back story: I've been avoiding benefits, it can be complicated when you are self-employed, but my design work only brings in a few thousand a year, not enough to cover rent. My dad has helped me a lot and when J was in crisis she would pay for things (taxis to hospital, day-today expenses, Lucy's cat food, shopping, whilst her benefits were cut when she was in hospital), and, yes, the occasional (okay, regular) bills top-up, which I think many couples do. Sometimes I would insist that I would pay her back (genuine embarrassment here about not being the "bread winner" and other nuclear family notions). There was another genuine, but private circumstance reason, for my abstaining from benefits, which I just can't go into here, but it made sense for many months. There never seemed to be a good time to get a part time or full time job because J was in and out of hospital, and I loathe the benefits system, and I rather enjoyed believing that I was "full-time self-employed", or "p/t s/e & carer" but the reality is that all focus on work is difficult when your partner is either recovering from a suicide attempt or planning her next one (and yes, I was/am anxious/depressed to the point that promoting myself to prospective employers would be a challenge beyond my ability). :-/ (Okay that sounds harsh on J, but even when she was self-harming in hospital, I was never convinced that staff were keeping her safe; advocacy and complaints can be exhausting too) And yes, I left my last job, just before a service contract change, partly to be more available to her.

Naturally, at some point, the shit hits the fan, as this way of living without even a modest regular income is unsustainable (although, as in a previous life-crisis, I was impressed at how far I've managed to get by on so little, and yet that means I'm taken so much financially from loved ones).

In a matter of minutes I went from being her full time (or p/t) carer to no longer being available in the daytime because I'll be at work, or looking for work. In fact, on paper, it has now been declared that I'm "no longer her carer" (although I can't recall that conversation being had between myself and the social worker, although I angrily dismissed another council worker who felt that giving me list of phone numbers for organisations, which I already knew about, counted as a successful "referral for support"). In a strange way, I have been cut loose, but I am in J's debt long term (financially and emotionally). With a little extra time and planning this might have been easier, or maybe this sort of break had to happen. And, yeah, Christmas is coming. But to say that your carer is sponging off you in front of a social worker could have had serious consequences (i.e. J being classed as "vulnerable" and myself being seen to take advantage). I need to be more grateful that I got out of that one without a mark against me. I need to be grateful of the clarity and honesty the situation provided. I am grateful. I was/am so sorry for the burden of that worry J was having.

But, crap, life is crap.

A worker from Rethink Carers Support later told me that I must apply for Housing Benefit immediately and was fairly fixated on me getting a form (when the web page was already in front me). I'm stubborn. Sometimes I just can't write demoralising things about myself in order to beg for money (I forget how stupidly proud I am, and yet so happy to take money from her and my family, but I guess it was an easier path). Instead, I have signed up to temporary work agencies and have had some help for this month's rent from my long suffering father yet again.

In summary, I was referred by a carers' charity for an assessment by Social Services (edit: DWP) as J's carer, and, that assessment process has forced me to walk away from that role (officially speaking). Isn't that a little sad? Like a sort of failure on the part of the system? It stings a little, because obviously I am still her carer and partner, and, depending upon the timing, I will always try to be there for her in a crisis.

So many bad and neglectful decisions were made by me this year because I was trying to "be there" for her and it all came crashing down when we were offered some help. Naturally, this has confirmed for me that most (if not all) contact with government agencies are poisonous and goal/agenda-filled, intelligence-insulting, affairs (God, that makes me sound pompous, but fuck it, I'm 43, it's like going for really shit careers advice or talking about poor exam grades with a headmaster). Somehow on paper, I am now just a shit who was living off J. (But we can sort that out, I think, because J and I are stronger than that)

Today she was talking about the mistake filled social care assessment form, prepared by the social worker, which still hadn't been amended, despite the social worker taking a sheet of notes from J (not returned, despite them being intended for discussion with her CPN, who was implicated as providing negative content - apparently his words were skewed also).

Just her mentioning the form has triggered a sluice of hate filled bile from me towards Social Services and towards myself (and perhaps a tiny amount towards her, for the timing, but it had been there bubbling for months and she was protecting me after all). Perhaps this is a turning point. J will be getting help now. The forms are "a means to an end" J says, whilst I rage and stomp about the injustice of prejudice from those who are supposed to help. But when will all this professional-to-professional (doctors, social workers, crisis team) Chinese whispers bullshit stop? We are like diseased cattle to them, waiting to be processed.

The whole thing, for me, has been utterly alienating. It was a nasty catalyst, like O'Brian in 1984 holding up the mirror to the emaciated Winston and then pulling a loose tooth out. Look at yourself. Shit.

Perhaps one day I'll try to explain things more clearly, explain the assessment process in a more useful way, but perhaps my frustrated testimony will also be useful as a snapshot or a lot of rights and wrongs which extend backward and forward from this cluttered point in time.

I think the word I'm looking for is "clusterfuck".

(Edit: 10.12.15 for typos)