Service Users, patients, clients, choice, smoke and mirrors

There’s an interesting twitter debate going on via @Rethink_ on what language to use for mental illness, those who suffer with it (do we suffer or what? ).

It is an interesting debate and I don’t think we should all be called ‘nutters’ ‘loonies’ etc. by the health service but what infuriates me more is all this ‘choice’ bollocks and being a ‘service user; blah blah disguising the fact that access to said services is piss poor. I don’t think ‘Ohh I can choose where I go (which was a choice between, somewhere near and somewhere far away so I like 90% of people chose the place nearest me, duh)  and I get a little password to go on a website, now I feel so much better about having to wait 6 months!’. It’s not that i dislike choice, I dislike the choice rhetoric being used to add a sense of false ‘empowerment’ to patients/service users/clients/customers/frustrated people, choice being used as political ammunition and being held up as a beacon of wonder in the NHS when the real problems are glossed over.

I have had to wait months at a time for ‘talking therapies’, despite all my medical professionals knowing I have suicidal thoughts, self harm issues etc. and them professing to worry about me, acknowledge my treatment isn’t working at really. That is normal, I know of someone who still had to go private for counselling after being hospitalised for a suicide attempt. Not that it’s the Drs fault, all they can do is refer and guess at how long it’ll take.

Someone could call me Fartarsewankerscumbitch or whatever and as long as I could be assured of some care being accessible when I need and for as long as a I need it; I swear half my problems come from being left high and dry after my allotted number of therapy sessions are through regardless of how I feel. Knowing your treatment is for a set amount of time adds anxiety and pressure to be ‘O.K’ within the said time limit and an anxiety about being left not O.K and having to go through the whole thing again in the future; which is less than productive when anxiety makes your depression worse. They say it’s a ‘revolving door’ system, perhaps it is as I currently feel like I’m stuck in it going round and round like a silent screen comedy caper.

Deja Vu

A.K.A “Not more bloody forms”.

So after an initially hopeful session of therapy where I started (please note the word ‘started’ here) getting into the issues around my depression and how far back they go in my life, how I felt as a child and all that, I’m back to ‘working on behaviours’ and filling in (or not as the case may be, it’s technically ‘homework’ so it can be done at the last minute as is proper for such things) little forms about mostly inconsequential areas of my life.

I am going to give this a try again. I have to , I have no other choice. I just wish that I could have some form of therapy that allowed me to talk about things, that tried to get to the roots of all this, as opposed to more sticking plasters that will eventually peel off and leave a sticky mess. This happened before, I had a session or two though ‘ohh this is good, I’m being brave opening up, talking about stuff’ and as soon as that teeny little gap opened up it got closed again as it all went filling in daft forms tastic. If anything it’s far more frustrating to see that brief glimpse and then have it cut off again than it is to never see it. I’ll probably get discharged again at the end of it as unless I try to sever my my own arm off in-front of someone I’m obviously ‘O.K’ and don’t need more money spent on me. I read a statistic about how a high percentage of CBT patients end up getting discharged at the end of their teeny tiny allotted time scale of treatment only to wander back in again a year or so later feeling much the same. I can see that happening to me. All in the pursuit of ‘outcomes’ or whatever, being able to fill in a form saying someone completed this course of and as they haven’t yet killed themselves or been caught trying to gnaw off their own leg they’re ‘fine’.

From what I can gather I’m pencilled in for about 6 more sessions of less than an hour. That is what I am being offered for a problem that leaves me currently unable to work and if I’m brutally honest, may leave my life at risk. A problem I have been ‘treated’ for for the last 5 (or is it 6?) years with little or no lasting improvement. In short something that’s a major, chronic health concern but may have less treatment time spent on it than a stubborn verruca.

Maybe I should write the forms in blood? Just for a laugh.

I’m considering going private, which as a someone who doesn’t really agree with private healthcare and is also utterly skint, is a scary prospect.

As an aside, my spell check did not know the word ‘verruca’ yet the computer’s dictionary did. Perhaps I am not mad but the world is?

Mental Health Services – the outpatient story

They’ve been in the news, mostly focusing on in patient care. Whilst this does need highlighting I’d like to have a rant about out patient services, or the complete and utter lack of them.

I’ve never been in in patient care, I was threatened with it once as a teenager but I can barely remember those years and ironically I wasn’t really crazy then (they saw my M.E/CFS as psychological, so I was sent to the psychiatrist from hell), they just thought I was and now I am actually going crazy everyone seems much less keen to actually treat my craziness.

My experience of outpatient care can be mostly described in one word :

min·i·mal

–adjective

1.

constituting a minimum: a minimal mode of transportation.

2.

barely adequate or the least possible: minimal care.

No 2 specifically.

I was formally diagnosed with depression (as opposed to the false it’s not M.E it’s depression mess form my teens) about 5 or 6 years ago. In those 5 or 6 years I’ve been on about 3 different anti-depressants, none of which have really worked and some of which have sent me crazier, or just not worked at all. My doubts and queries about my medication have rarely been given an answer beyond the monosyllabic, I have felt for the last year or so that my latest medication, venlafaxine (which has had the dosage raised again and again, like all the others) is leaving me emotionally dulled and deadened to the extent that it is starting to add to my depression symptoms. All I’ve been told is I am not well enough to consider lowering the dose as I am still ‘very depressed’. I need to be ‘more stable’. It’s like talking to a brick wall.

I have been referred to psychotherapy twice. The first time was useless. I had 16 sessions of CBT which I didn’t find very helpful and when I came to the end of my allotted 16 sessions I was told that was it regardless of the fact I was still as depressed as ever. It took me about 2 years to get referred for a second time; with one memorable false start of referred for counselling at my GP’s surgery only to be told a few weeks later I wasn’t eligible as I was seeing a psychiatrist and was thus too ill. That counselling wasn’t for ‘people as depressed as me’. After asking the psychiatrist and GP about 20000000 times again the psychiatrist (not my regular guy, interesting)  referred me to some ‘improving access to talking therapies’ thing. About 6 months or more after I got that referral I had my first appointment. It seems like it’s CBT again, which I have told everyone I didn’t find helpful. Though on the plus side the guy seems nicer than the other one and said there were other options available should I need them.

My appointments with the psychiatrist last about 5 minutes on average, I say I’m still depressed, go over my feelings, say when I was hurt myself or felt suicidal it all gets noted down and nothing happens. I raise the odd question it gets ignored or I just get told to go away.  I had one good one hour or so session about 5 years ago where I went over things in depth, but no more since as it was an introductory type thingy-ma-bob.

I am just given pills and sent away. I am not getting better, if anything I am getting worse. No one seems to care.

Beyond mostly ineffectual pills or short courses of CBT it seems there is nothing anyone can offer me.

The treatment I found most helpful, when I thought I might be getting somewhere was when I saw a clinical psychologist, I had more than one long session where I could talk in depth (one hour is woefully inadequate for a long history of ‘shitty stuff that fucked you up’) but that was arranged through university and I graduated last year.

I feel pretty much left to get on with it on my own.

It’d be nice to have someone who listens to me and my concerns, to not be fobbed off with more pills that don’t seem to bloody work; it’s the same pattern over and over. I get a bit better, it fades, the dose gets raised with little or no improvement till I plateau or even get worse, I can’t go any higher on the dosage so my medication gets changed and it starts all over again, or I just get stuck asking questions and being ignored. Not to mention the good few months of the horror that is withdrawal and changing over of anti-depressants , which I why I won’t just stop taking them as I am often tempted too, it’s too fucking hard to come off them without doing it properly, If I miss even a day or two I go ‘cold turkey’ (or more accurately hot, sweaty, dizzy, nauseous, headachy and roller coaster emotion turkey).

I spend more time starting at the fish in the waiting room than getting anything that can be described as ‘care’.

Sleep and distraction

When I am depressed I sleep a lot. Or more accurately I try to sleep a lot but it mostly involves just lying there. Or I sleep the day away and am plagued by insomnia at night.

‘Fatigue’ is often listed as a symptom of depression and it is; but in many ways it goes much deeper. It’s often avoidance, a coping stragegy. It’s a way of coping when being awake and in the world just becomes too painful.

Depression is exhausting to boot. The CBT leaflet I got sent the other day tells me to get out and do things and the usual stuff. The trouble is it offers little advice on how to cope with the mental (and phsyical) result of what I can only describe as a  ’burn out’ resulting from ‘distracting’ yourself. Yes going out to see friends and doing stuff does help, but it’s only ever a sticking plaster, it doesn’t make depression go away; it just allows you to escape for a bit.

And that is essentially what that advice is, distraction and escapsim. Perhaps it works well for some people but at the very best getting out there and doing things is only ever a distraction for me; the depression always catches up with me. Sometimes it’s not even distraction; it’s just a big fat reminder of how shitty I feel and how utterly draining it is to ‘act normal’ for a few hours when all you want to do is curl up in a heap and cry. Trying to be sociable whilst desperately trying to force ideas of suicide and hoplessness out of your mind is draining; when you’re in that situation you can never really relax as it’s a constant, conscious effort to ‘ignore’ such thoughts. It’s all fucking exhasuting really.

And we have come to another reason why I found CBT unhelpful and I didn’t even start out intending to have a bitch about it. Maybe I need therapy to get over therapy?

 

Being an ‘awkward’ patient

During my long history of being ill (can you be a professional ill person?) I have undergone many ‘treatments’ and being the lucky girl I am I have managed to develop not one but two illnesses with no definitive cure and piss poor access to treatment on the NHS.

I am also lucky enough to have the wonder cure all CBT do fuck-all for me twice, for both my M.E and depression.

Though what really, REALLY annoys me is how I have been made to feel like the world’s most awkward patient and that the failure of certain treatments and therapies has been my fault for not ‘engaging’ with the therapy enough or ‘not trying hard enough’ or another assortment of excuses. What did I do that was so awkward? Well I asked questions,  I had doubts and I expressed them; something which I assumed was supposed to be a good thing during something billed as ‘therapy’.

During my latest bout of CBT for depression (which seeing as I’m still depressed as ever has been an amazing success) I made the mistake of uttering the word ‘existential’. I got threatened with having my treatment stopped as I wasn’t ‘engaging’ as I kept trying to get across that for the most part my depressive moods don’t tend to have any obvious external triggers, that they come on suddenly and for no reason. This was apparently not good enough. I couldn’t just come in and say I was depressed and I didn’t know why (I’d also like to point out I was given no help in trying to figure out any ‘hidden’ deeper reasons for my moods). I was patronisingly told ‘well obviously you’re intelligent’ (I think I mused about Descarte’s ‘cogit ergo sum’ on one of the forms, I may depressed but I can still be a pretentious arsehole), which seemed to be code for “stop questioning things now ! don’t reveal the holes in the treatment we didn’t ahve the time/money to think about! Shut up an fill in a sheet!  and no you can’t have ‘musing on my existence’ as an acitvity!”.  My depression didn’t fit into the narrow categories that the CBT seemed designed to cope with and I felt like I was made the scapegoat for this. I tried I really did, I racked my brains trying to think of things to put in the stupid little forms and make sure my mood-swings fitted into the little ‘thought pattern’ sheets. I went through the thought excercises and tried to make them work, sometimes they did but when they didn’t I was yet again made to feel bad that my ‘mood score’ hadn’t improved after doing the excercises, so by the end I was inflating my scores so I didn’t get ‘dismissed’. I tried and admittedly it did help with some  minor, more peripheral problems like being anxious about uni work etc. But the big looming problem which was my main problem? The mood-swings that come on so suddenly and without any obvious logic behind them, the problems that have been haunting me for as long as I can remember? Those were left untouched. Unless my moods had a ‘trigger’ or a ‘negative thought’ I could counteract I was left helpless. I tried to explain that the whole illogical, unknown  and unpredictable nature of my depression is what scares me the most; how those moods that seemingly come out of nowhere are the worst and most terrifying. Yet those were the problems that were ignored, I was told (not in so many words) that by drawing the focus on this I was being ‘unhelpful’. I started out being as honest as possible about my moods and by the end I was effectively lying. I was lying so I wouldn’t be chastised for not having a ‘trigger’ or some identifiable thought pattern.  In short I was trying to change my illness to fit in with their definition of what my illness should be as opposed to reflecting honestly on what actually was.

I’ll admit I wasn’t perfect, but as I was doing this treatment due to chronic mental health problems I think that can give me a bit of leeway in the whole ‘may not actually be thinking like a logical human being’ department. Why should someone with serious depression who obviously isn’t ‘thinking straight’, be under so much pressure to make a treatment ‘work’ even if it means their concerns are ignored? Is it really that much of a shock to a mental health professional that severly depressed people are sometimes really rather apathetic about things, that it’s not deliberate ‘awkwardness’ but a symptom of our illness? When you’re on the edge of despair and you just wish it would all go away, even if that means suicide, it’s safe to say that logically appraising things is not really something you’re finding easy and that filling in a form and rating things on a scale from 1-10 can often slip your mind.

Why should people be made to feel they cannot speak up about what is truly worrying them as they will be chastised for being ‘awkward’?

I am not saying my therapist was a bad guy: I feel the problems with this lie primarily in a lack of NHS funding. Even with the best therapist in the world 16 hours is nowhere near enough to treat someone with serious depression, but that was all I got.  I worry that if I apply for more benefits (atm I can’t work I’m far too unstable, unless anyone wants to employ a moody, unreliable, tired person with fuck all experience who will take a lot of sick days; in which case I can send a C.V) I will be penalised again for not ‘doing my best to access treatment’. If the treatment isn’t there and what is there has failed me, what the hell can I do? I’m even considering going private but as I have about 2p to my name this isn’t an option I can seriosuly consider beyond a short daydream about recalling my childhood on a Le Corbusier lounger.