You know I find these phone consultations to be hard work. I don't know whether it's the format or the endless questionnaire that I have to fill out every week, or the constant need on their part to reassure themselves I'm not going to slash my wrists. What would they do with a patient that said they were going to: have them arrested? Sectioned? I can't imagine many people in that positoin feel compelled to be honest. That's the problem with our system: it's not there to help you, it's there to impose a particular authority upon you. You WILL be made well.
Apparently my questionnaire response was slightly more positive this week. So what? Doesn't really mean anything. Assigning numbers to questions on a piece of paper is a poor reflection of real life. It doesn't address or assist with any of the issues at hand. Of course helping with those issues, social isolation, financial insecurity, the reality I am never going to find a career, and the cost of travelling around, is non existent. The guy I speak to means well, but it's the system: it's oppressive. We're not willing to invest in or create real solutions.
He tells me that I have social phobia, he's even sympathetic to the reality I might have aspergers (despite the lack of a diagnosis), but it means nothing. To have social phobia dealt with means I need to be 'upgraded', I need to be referred to the next treatment 'step', which is step 3. What this means is going back on to another months long waiting list. This is just ridiculous, but what can I do?
He tells me he'll talk to the aspergers diagnostic team, the people that have already lied to me (I explained this to him, for all the good it will do). I doubt it will make any difference. They aren't going to change their mind without good cause, and I can't give them good cause. There is no functioning way to diagnose an adult with an ASD condition. This is stupid, obviously; but it's how the system 'works'.
There's a bus pass scheme that's available for people with mental health issues as well. He even thinks I should be able to get one. Unfortunately the problem is that I need to be a patient of the local mental health service. Instead of being a patient I am diverted to these secondary services. It's self defeating, but I guess that's the point. I'm sure if the Tories get back in, and they will unfortunately, such schemes won't last much longer anyway.
Thursday, 25 May 2017
Tuesday, 16 May 2017
Stepping Out 4
Been a little while since last we 'stepped out', but as of last week I see to have a stable service, albeit on the phone.
Over the phone is a little difficult. It makes interaction difficult. Even though social environments can be tricky for me (I tend to tire when I'm asked lots of questions, especially ones that are devoid of necessary context), the telephone is much more of an effort. I feel I have to speak even when I'd rather not because that's much more necessary. I have to acknowledge every spoken word much more. It's harder work.
That said they seem to have found someone who, despite the service's unfortunate propensity for endless endless questions and questionnaires, has a better understanding of my situation. Of course he doesn't personally have the power to solve these issues, at least he recognises that social isolation is a major problem and that without recourse to affordable (preferably free) public transport nothing he offers will be worth a damn. Unfortunately the travelcard scheme available requires specific conditions be met. He's willing to meet them - if he's allowed. The question is whether his service falls into the category of those that can sign off on that.
He's also discussing the issue of social anxiety. I've never been terribly impressed with that diagnosis because it always seems rather disposable and lightweight. It's another poorly regarded and flimsy mental health descriptor - because no one takes it seriously it seems to me. They should because we are social creatures, we have to function in what passes for our society these days - so if you can't, you're a bit screwed!
More importantly, he is correctly linking this to neuro diversity - the test I had for aspergers a couple of years ago that went nowhere. I have warned him to expect little from the diagnostic team since their testing process is rubbish and they have been caught in a lie (saying simultaneously that a full developmental history is required for a full diagnosis, and then saying it wouldn't have mattered anyway - can't be both). I am under no illusion they will hold to their procedures and believe they have acted with integrity (I was promised a discussion with the Attention Deficit Disorder people that, when I followed up, was told no such promise was ever made). However if he can gather more evidence through these endless endless questions, it might lend some weight to my cause. I'm not getting my hopes up though.
Ultimately though he can only do so much. I have to go through all this because that is what the medical profession expects and if you don't play the game, they refuse to listen at all. It's far from perfect, but maybe at last something might shift.
Over the phone is a little difficult. It makes interaction difficult. Even though social environments can be tricky for me (I tend to tire when I'm asked lots of questions, especially ones that are devoid of necessary context), the telephone is much more of an effort. I feel I have to speak even when I'd rather not because that's much more necessary. I have to acknowledge every spoken word much more. It's harder work.
That said they seem to have found someone who, despite the service's unfortunate propensity for endless endless questions and questionnaires, has a better understanding of my situation. Of course he doesn't personally have the power to solve these issues, at least he recognises that social isolation is a major problem and that without recourse to affordable (preferably free) public transport nothing he offers will be worth a damn. Unfortunately the travelcard scheme available requires specific conditions be met. He's willing to meet them - if he's allowed. The question is whether his service falls into the category of those that can sign off on that.
He's also discussing the issue of social anxiety. I've never been terribly impressed with that diagnosis because it always seems rather disposable and lightweight. It's another poorly regarded and flimsy mental health descriptor - because no one takes it seriously it seems to me. They should because we are social creatures, we have to function in what passes for our society these days - so if you can't, you're a bit screwed!
More importantly, he is correctly linking this to neuro diversity - the test I had for aspergers a couple of years ago that went nowhere. I have warned him to expect little from the diagnostic team since their testing process is rubbish and they have been caught in a lie (saying simultaneously that a full developmental history is required for a full diagnosis, and then saying it wouldn't have mattered anyway - can't be both). I am under no illusion they will hold to their procedures and believe they have acted with integrity (I was promised a discussion with the Attention Deficit Disorder people that, when I followed up, was told no such promise was ever made). However if he can gather more evidence through these endless endless questions, it might lend some weight to my cause. I'm not getting my hopes up though.
Ultimately though he can only do so much. I have to go through all this because that is what the medical profession expects and if you don't play the game, they refuse to listen at all. It's far from perfect, but maybe at last something might shift.
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