I spoke to the Work Psychologist today (WP). I needed to tell her the best time to contact the aspergers doctor (AD) that has not provided me with the diagnosis I feel I need. The WP is, in her own peculiar way, helpful, but there's always a sting in the tail. It was her that suggested contacting the AD, her idea. I agreed and signed the consent form she sent me to that end. Now she is saying that, while she is happy to do as suggested, it won't make any difference. This is what she does: on one hand she will suggest things or offer help, then later on decide not to bother. She did it at our initial meeting by saying she could undertake such a diagnosis herself, then decided she couldn't, and subsequently when I started on the Work Programme she offered to write a letter to support my case from a mental health perspective and then backed out saying, again, it wouldn't make any difference.
She remains broadly supportive, but the biggest problem I have is that she just doesn't understand the reality of the experience one faces dealing with the DWP as it currently is. The DWP is weaponised to be used against the poor, against anyone that claims benefits. This is a thing, but of course such political concerns are not her remit in much the same way that having to deal with the DWP is not part of the remit of the AD and the NHS at large (ie my GP). It makes it rather difficult to deal with the WP because she doesn't see the totality of my experience. Again she mentioned claiming PIP: i find this curious because the PIP system is in absolute meltdown and people that are on their last legs are finding their claims going awry. In light of that it seems somewhat almost irresponsible to suggest I claim it. She argues I should on the basis of paying for a 'community mentor' to help me...somehow. This is a suggestion that she made in her initial assessment of me two years ago. Nothing was done then (I don't even remember reading that part) and the DWP certainly didn't follow it up - for example by suggesting I claim DLA (as it was) or tell me what a community mentor actually can do. Unfortunately I didn't think to ask.
Any such claim will fail, I'm sure, without proper evidence to back it up, so we come back to the point of a diagnosis. Interestingly she agrees that getting one is important and proceeded to explain that the system of diagnosis is very rigid, at least in the UK. I explained what I thought about the testing done, that it seemed more oriented to a younger person, and that the tests were too specific and ineffective (I've already covered this in an earlier blog suffice to say that they aren't representative of real life experience). She agreed that this was a problem saying that it was clear that, as an older person, I had the life experience/intellect to 'see through the test' - but that argument is countered by saying that same experience/intellect means I can function and compensate for any difficulty caused by an autism spectrum issue. Whether that's reasonable or not I don't know, in fact not knowing is the only thing I can be certain of because I do not have access to anything that can provide certainty. That's the problem!
So I'm left with waiting for her to speak to the AD, whatever that will achieve. She offered words of support that are all very complimentary, and taken in the spirit intended. But they don't translate into actual concrete support and that's the issue. That's why i need a concrete diagnosis because the system needs proof and certainty that my word alone won't provide. Yet every attempt to find that certainty is met with the kind of questioning ("why do you need a diagnosis?" I'm asked) that I'm accused of myself as a means of not engaging with help that's offered. It is very frustrating. The only people left to ask for help seem to be the National Autistic Society, but they really aren't going to be able to sway the AD surely?
Monday, 1 September 2014
Sunday, 24 August 2014
(presented as is, no time for editing today.)
Positive Step; I’ve mentioned them before, so have others, in responses to my posts. They are the go-to group referenced by my GP and now the asperger clinician, after so far failing to provide a diagnosis. They are presented as the entry level mental health service provider, but in truth they exist solely as a provider of Cognitive Behavioural Therapy and nothing else. So I’m being told to go to them for what will be the third time. I know it’s pointless, but if I am not seen be doing what the doctors think then I will be criticised and labelled as lazy. This is how the game it seems has to be played.
However Positive Step has a history I want to understand. They are connected with ATOS. They call their advisors, whom you might otherwise like to think of as doctors or psychologists, Wellness Advisors. This reminds me of what ATOS calls their diagnostic staff: Healthcare Professionals. Both are, I suspect, unprotected terms, regardless of the background of any individual concerned.
On Tuesday morning I have an appointment with a Wellness Advisor. This process has taken me almost a month. Initially I was told, by my GP, I had to refer myself and did so. Unfortunately trying to get hold of Positive Step is not easy. They have an admin team that do not seem to understand the nature of the people they are dealing with and so instigate a ‘we’ll call you back at some point between now and the end of time’ approach, much like any mundane call centre. I suspect this is the influence of ATOS. When they did call back I was out (it was the evening and I had assumed their office closed). I rang the number back to find it was someone’s personal mobile phone number! They seem to contract out to private individuals the job of booking appointments even though that process includes a brief but personal assessment of your state of mind (presumably so that if you are actually suicidal they can call your GP and get themselves well out of it, as they aren’t specialists). I was told someone was going to call back shortly. They didn’t and I had to ring again (a freephone number at least) the next day when I did manage to get through to someone.
The assessment process however is just an entry point to another level of bizarre and pointless admin: you are then put back on ‘hold’ to wait to be given, again with a phone call, an appointment with the Wellness Advisor who will conduct another assessment! No it doesn’t make much sense.
This process has taken about three weeks: I rang back twice after receiving two identical letters saying that ‘we called when you were out and so if you want to proceed you have to ring back and go back into the queue’. This really is no way to treat people. I was even told they would email me, as somehow they have my email address (I must have given it to them during a prior appointment – the two times I’ve seen them previously were never this awkward). That didn’t happen either until my third call managed to sort me out with the appointment I have on Tuesday.
Curiously this email, sent by their admin team, includes details of a group called ‘OHassist’. This is the group handling Positive Step’s admin, and they are connected to ATOS. This is what the bottom of the email says:
OH Assist TM is a trading name used by the Atos group. The following trading entity is using the trading name OH Assist: Atos IT Services UK Limited, registered in England and Wales with registered number 01245534 and Vat No. GB232327983; and is registered office at 4 Triton Square, Regents Place, London, NW1 3HG.
Now why does a (presumably) small group liked Positive Step even need a multinational IT firm like ATOS, perhaps through a subcontractor or affiliate, to handle phone calls? Why is this long winded process – just to get an appointment with someone who may or may not be a proper mental health professional – necessary?
I don’t know if Positive Step operates elsewhere, that isn’t the impression I get though I could be wrong. Their website lists they are a local group only and I can find no trace of any link to other iterations across the country. They are also supposed to work in partnership with the mental health trust that has been diagnosing me (hence telling me to go to Positive Step). I need to ask my Wellness Advisor (what a stupid term) what his/her experience and qualifications are. I know they peddle CBT and I know that’s all they will offer me so to be fair I am wasting my time, but I have to be seen to go through this nonsense. However I will be using it as an opportunity to ask some questions.
My suspicion is that they exist to offer a very simple one size fits all solution to mental health problems in the local populace with the notion that such people can be quickly helped and thus won’t need to be a ‘burden’. Unfortunately CBT is not suitable for everything or everyone. It might be great if you’re afraid of spiders or heights – something that can be easily debunked and desensitised – but if you have deeper or more serious issues you are not best served. I do not need to be marginalised because I ‘refuse’ CBT. I need to get access to a proper diagnosis and the right kind of support. Is the best that can be provided locally a group linked to the likes of ATOS?
You see the problem is that by regarding all mental health issues as something that can be fixed by CBT you are saying that such problems are ‘wrong thinking’ or ‘negative’ thinking in some way. Certainly the experiences they can lead to can indeed be negative, in that they are painful and limiting. But to regard this as bad is something I would regard as unhelpful; it’s a rather dismissive and simplistic approach just seeking to label a problem as bad and apply a process to ‘correct’ it. CBT doesn’t seem (and wasn’t my experience last time I interacted with it) to take into account the reasons why you have problems. These may well be more serious in nature. I don’t imagine that has changed, otherwise you would require more than a Wellness Advisor can provide.
Aspergers and neuro diversity is not ‘bad’; it is merely how someone’s mind functions. It is how they think. Why is that bad? Problematic certainly; our society demands people be able to function a certain way and, as I contend with my experience, these conditions make life a lot more difficult in many fundamental and unseen ways. I do not need to learn a process to ‘correct’ my thinking; I need a process that helps my issues be recognised and accepted so that I can become independent of a system that currently does not recognise and accept them and in fact (in the case of the DWP) seems to exploit such people.
Tuesday, 19 August 2014
Yesterday morning Radio 5 began the week in the manner to which the BBC has become accustomed. A ‘discussion’ about supporting troubled families opened with an appeal to the Taxpayers Alliance. It quickly became apparent this was not a discussion about support, but the cost of troubled families, and involving the Taxpayers Alliance – a right wing populist fear mongering pressure group feted by the media too much – only proves this.
So instead of a sensible discussion of how best to treat families already in difficulty, we entertain propaganda further demonising these people (regardless of their behaviour). All on the basis of how much they ‘cost’ the, to quote one caller, ‘long suffering’ taxpayer. As if these families purposefully exist only to be a burden; that they will never have any worth as human beings because they will never contribute. Don’t forget, that’s how a person’s worth is measured today: in how much (money) they contribute. A position reinforced by the tax dodgers and their apologists. Know your enemy.
What expertise does the Taxpayers Alliance have on this issue?
Alliance! That makes me laugh; doesn’t that sound like a positive and inclusive word. Friendly and helpful – like the heroes in Star Wars. Hardly!
What credentials do they bring to a debate about support (what this should be about)? A rhetorical question of course; I was minded to call in but I’m not going to be put on air to look like a tit (or made to wait for ages since dissenting views won’t be tolerated I imagine) so I just left that message for the BBC drone to pass on to…well, no one I imagine.
It was an hour of people bemoaning spending money on supporting people. All of whom were oblivious to the consequence of not supporting people. We have become a nation that knows the cost of everything but the value of nothing. What is the alternative: to continue moaning about the family at the end of the street? Actually it’s worse, the curtain twitchers and penny pinchers want these people to be completely cut off from society. They don’t care for the consequences or the message it sends to dismiss people in so total and so brutal a fashion. This is unbelievably destructive and dangerous to society. Aside from the risk of inviting addiction and dependency in far worse ways than income (we are ALL income dependent, that’s capitalism), you are going to alienate people so much they are likely to abandon any pretence of morality in the name of survival. In other words you are inviting criminality to the point you could well be accused of abetting the crime itself. This is total madness. But the right doesn’t care: these people are alredy scum, so who cares?
They can’t be saved; it’s almost Calvinism. But surely there is no price too high if it means helping people because the alternative is a cost we cannot bear.
As a depressing coda here is the strapline from the TPA website (yes, I went there):
“In areas such as public sector remuneration and quangos, TPA research now represents the definitive primary source used by the media, academics and the public.”
Sadly they do seem to be the preferred source, even if they are biased and in favour of propping up a system – capitalism – that has comprehensively failed (if it hadn’t it wouldn’t have need a socialist cure).
The irony of an organisation that claims to support a democratic voice, telling other people how to live; it is not lost on me.
Thursday, 14 August 2014
Falling employment seems to be reported as the result each time the figures are released. This seems to be the result. Yet it is never accurately reported by BBC Bristol. I have complained about this before, but it never gets taken seriously. I tried again the last time the figures were released and got through – off air (no way I’m going live!) – to someone called Lucy Tegg. She’s actually one of their broadcasters; for once I’m speaking to someone aside from a random office person.
I had hoped she might take it seriously, but of course when I brought up the fact that a person no longer claiming isn’t necessarily a person now gainfully employed I was rebuffed. My question was met with another; she asked me what angle I was coming from. I told her that I was interested in the facts of the situation and that assuming people are being employed is a stab in the dark at best. Moreover it (quite deliberately, I believe) leads people to think that welfare reform is working.
The phone call quickly ended. I say ended, actually she just stopped talking. My attempts at getting a response just fell into the aural abyss so I hang up; I can’t help thinking that was deliberate.
This is the BBC. They are not interested in facts, only propaganda.
I just don't buy the claim these figures mean anything significant. Firstly we all know the DWP has adopted a punishingly brutal approach to their 'customers'. This has inevitably and unarguably led to a drop in people claiming. Are people that are on the various schemes, including Workfare or the Work Programme (and any post WP schemes that one finds oneself on for 'failing' it), being counted? Some people say they are most think they are not. I have not seen concrete evidence either way, but it is very likely, given the attitude of the DWP, that such people are categorised differently: in training, on work experience, etc. Not technically unemployed - signing on.
Surely if the reform was as effective as you would assume it to be then wouldn't the figures be greater? According to the Guardian, the unemployment rate has dropped to 6.4% from 6.5! But the government claims success due to what appears to be a consistent, period on period, drop. Yet a few thousand here and there surely can't be indicative of anything.
The number of people in work rose 167,000 on the previous three months to 30.6 million, with 132,000 fewer people out of work, at 2.08 million people. The jobless total is the lowest since the end of 2009, giving an unemployment rate of 6.4%, compared with 6.5% last month.
There were also 8.86 million economically inactive people – those without jobs but not seeking or available to work – aged 16-64. This was 15,000 more than in January to March 2014 but 130,000 fewer than a year earlier.
So there are 167,000 people more working (in the period until June) than before, but 132,000 people less out of work. That's a difference of 35,000. Where did they come from and why are they being counted if, as well, the number of economically inactive people (those not signing on, I assume, presumably including the sick) has risen. I don't understand that incongruity.
The general secretary of the TUC, Frances O'Grady, said the figures suggested the economy is "very good at creating low-paid jobs, but struggling to create the better-paid work we need for a fair and sustainable recovery".This seems to be the key: self employment, which is a potential house of cards because if you aren't found to be pulling enough hours while claiming tax credits (which JC+ will tell you is the way to go), then you could be forced to pay back that benefit. How many people are going to be in that situation, trying to make a living selling Avon for example.
She said: "Self-employment has been responsible for almost half of the rise in employment over the last year. The fact that self-employed workers generally earn less than employees means our pay crisis is even deeper than previously thought, as their pay is not recorded in official figures."
Unemployment is just over 2 million, making a total of 10 million + for people not producing profit to please the government (the only way society deems you to have any worth, of course). Yet we are expected to champion a rise a fall of a few thousand in the claimant count. In fact, as you can see from the BBC article, they only focus on the drop in unemployment - never the rise in employment. That doesn't make much sense to me since one might think that would be the focus - a concrete statistic showing that more people are working. Tellingly they focus on the drop in people claiming - because that's what the Tories care more about; cutting people from the social safety net. The rampant sanctioneering is evidence thereof. I would think these relatively small figures are just the tides of people shifting between, to and from, one McJob to another. That's what a Tory measures as success; limited thinking toward an agenda of curtailing support in a climate of austerity and unease.
Thursday, 7 August 2014
My quest for an asperger diagnosis ended in the middle of June when I was told the outcome of the testing process was that, mainly due to a lack of developmental history (i.e. childhood), they could find no evidence to support the claim. It has taken until a couple of weeks ago to get this in writing.
This process has been painfully slow and I am not very happy with the outcome. Where does it take me and what can I do now? There simply does not seem to be any support at all. I have no idea whether or not I actually have Aspergers, but there is definitely something 'wrong', that is, diverse, in the way I operate, cognitively speaking. There is no easy way to make that point either, which is part of the problem: there doesn't seem to be an official language or any terminology that I can find. Without being part of the club, officially speaking, do I have any right to use such terms? It's like trying to stumble through life with your eyes shut.
The Work Psychologist had offered to speak to the clinician that assessed me (who, I'm grateful, agreed). Last week I posted off the report along with a consent form tha the DWP apparently require in order for two professionals to communicate. I'm not entirely sure why one is necessary, after all I didn't need to sign one when she (the Work Psychologist) spoke to my GP (nor vice versa).
I presume the WP will contact me afterwards. Or not, who knows; despite her saying all the right things, in terms of support (which itself I suppose given she works for the DWP I should be grateful for), I've no idea what she actually does. It doesn't seem to translate into actual solid support. Not that I've noticed. For example, when I started on the Work Programme she agreed to write a letter in support of the problems I have but then decided that, because the provider is independent of the DWP, it wouldn't make any difference and decided not to bother. I've no idea whether it would have made any difference; given the attitude of that provider in retrospect probably not, but it's better than nothing surely.
If there's one thing I've noticed throughout all my dealings with 'the system', it's that when you decline to do a thing you are accused of not making an effort - of being lazy. But when the positions are reversed it's just practical or realistic, or it's not possible to actually 'make an effort' because of cuts etc. While there maybe some truth in that, after all Work Programme providers really are answerable to no one else, it's a definite double standard that speaks to the nature of the relationship between the individual and 'the system' (I hate using that phrase, it sounds rather childish) that assumes the worst of the former. I don't know how that is ever going to change without a fundamental change in that relationship and...'the system'.
I feel like I'm in limbo really. Things are getting stressful: I have no idea if and when ATOS will call me in for another interview. Ironically the WP advised me to claim PIP! I couldn't bring myself to do this for two reasons: firstly the system is in massive disarray with even dying people having to wait months, and secondly because of that reason - I feel guilty adding to that backlog when there are people much worse off than me who are struggling in these ridiculous delays. Maybe when I talk to her again she can make a better case for me to claim PIP and if she can, maybe she can support that claim. That's the problem I have with her, though, she won't. That kind of concrete support is the one thing she just doesn't provide and is why I am left confused as to what she's actually for!
Meanwhile I have been advised, by the clinician, to pursue another appointment with Positive Step. This will be the third bite of the apple I've taken with them. She said that they are the main provirder of mental health support in the area: in other words anyone that has mental health is supposed to get referred to them, at least initially. If ones issues are sufficiently serious they would refer you to a greater level of support. I tried to explain to the clinician that all they do, in reality, is offer Cognitive Behavioural Therapy - that's it. They have no expertise to offer support for neuro diverse issues or anything like Aspergers, ADD, or Non Verbal Learning Disorder (assuming they believe it exists, unlike the clinician) and, in my experience, CBT doesn't help with those issues.
My problem with CBT is that it requires awareness to put into practise - and practise to become effective. It's almost a catch 22: you dont' have that awareness when you're stressed because you're stressed! I'm not knocking it per se, if it's effective for others that's great, but to apply it to all issues, as the fundamental mental health service, is a very shortsighted approach. When you are cognitively wired differently to begin with, it doesn't change anything. It also doesn't address the reasons why someone might be struggling; certainly it might alleviate a fear of spiders, for example, but it won't alleviate the stress caused by having to deal with the DWP and the fear of having your only source of income stopped - moreover the practitioner won't be in any position to help if you end up sanctioned!
So to summarise, the struggle goes on. Mental health is a unique situation in that it's invisible nature is hard for people without experience to understand let alone empathise. While in many cases a broken leg might be worse, it's a lot easier to get support - everyone can see and understand that problem. Again I make the point there are people a lot worse off than me (cancer victims waiting for their PIP claim to be decided for one!) - and I hate this divide and rule mentality that forces me to make this caveat. Dealing with spectres that can't be seen and refuse to be identified that, while not as serious as cancer, still exist to make life a lot harder than it ought to be isn't easy. We seem to live in a world that doesn't care if you find things difficult unless you are impaired enough to be the acceptabel face of disability. The problem is that leaves the individual struggling not only to get on with the mundane difficulties of life (finding a job, holding down a job, etc), but wrestling with those spectres. Ghosts that might seem no more harmful to others than the greedy phantasm in Ghostbusters, but remain visible only to the individuaal concerned.
Saturday, 12 July 2014
Last Christmas First Bus in the South West/Bristol undertook a consultation, presumably because of the constant criticism they rightly received for their dismal service. For years they have been the target of anger and frustration from local people: the service is dire, overpriced and staffed - more than is acceptable - by people with an appalling attitude to customers. I think we've all known times, if we use the buses at all, when we've barely taken our ticket and the driver has put his foot to the floor throwing us around the cabin like a rag doll. I've seen that happen with a woman holding a baby (it didn't end badly, fortunately)!
The result of this introspection was to fundamental change of the system leading to the removal of return tickets throughout the region. The only option now is to pay for slightly cheaper single tickets, priced according to mileage, or pay for a day ticket that costs at least £6. In Bristol itself these changes seem to be somewhat popular, though time will tell if it makes any difference to the overall quality of the service.
Beyond, out in the sticks, it's a different matter: we are also affected by the lack of a return ticket option. Unfortunately this has had the effect of increasing the cost to make such a journey by at lest 25%. In response to my tweeting them about this (i have also made a formal complaint) I was told that 'fairer doesn't mean cheaper'. Not sure what else it means, nor how an arbitrary decision undertaken by management, who defend this by saying it's what customers wanted, is in any way fair.
As an example, a return trip to the Jobcentre used to cost £4.40. Now I have the choice of paying £2.80 each for two single tickets, or £6 for a day ticket. Had that journey been slightly further west (it fits within the influence of the Bristol city zone) that day ticket would be £7 instead. By any definition this is not fair. There is no reason to scrap return tickets at all. They do not require any significant change or difference in the ticket mechanism. This is laziness on the part of a company that needs to be divested of its control over a vital public service. This is the perfect example of the failure of privatisation.
Tuesday, 8 July 2014
I went for a walk this morning. This is something I like to do when the weather is less onerous – which includes when it’s hot. Though I hate to moan about our weather (that’s a lie), I find myself struggling in the heat these days. I use the word heat in relative terms; it certainly isn’t as hot as really hot parts of the world, nor has it been as hot as it was last year during that heatwave. You’ll forgive me if I wish for more tolerable weather than that.
The weather has taken a more sedate turn with some welcome rain and a chance to walk where it’s fresh and fragrant. This is surely the essence of a healthy lifestyle. Why then am I made to feel, as someone receiving benefits, the opposite?
We have a society where, even if one does things that are healthy (such as enjoy a simple walk in nature), they are made to feel negative as a result. Currently I feel exceptionally negative about society; I do not see any immediate solution to the problems we have because there is no real opposition. There are certainly a lot of angry people and a lot of people in real hardship as a result, but there is no organisation against these problems.
Problem isn’t even the right word; that would imply something beyond our control. These are circumstances that have been engineered by those in power to both maintain that power and to increase it. I’m not seeing much that will change it, even though we, the people, have the real power because we have the numbers. Unfortunately the will just isn’t there to organise it properly.
I can’t take a walk without feeling guilty that I’m enjoying the most basic thing life has to offer: my passive presence in the natural world. I am made to feel that I should be doing something else, something proactive, because that’s the role imposed on me by the system and its masters. Meanwhile these masters do everything they can to maintain their system. They make sure they are as well as can be; you will hear Tories refer to people such as William Hague as being non-aristocratic, but he receives no less compensation for being part of that power base. Compare that to a teacher who is struggling to survive on a wage far beneath what their workload demands. That is of course deliberate. Steve Webb, Pensions minister and Bedroom Tax apologist, not only receives the generous wage that ministers get (at least 150k) but also a shit load of perks including mortgage relief!
It’s a scam and if you aren’t in on it, or aren’t playing the part of gullible mark, you are to be ostracised. This is the essence of the weaponisation of poverty that has taken place over the last four years. Consider how people that are sanctioned from the system are treated. Whatever the reason given, I can see nothing to justify this almost religious level of punishment: to be removed from society through financial means seems utterly cruel. Once excluded these people are abandoned: there is no policy within the DWP (and I’d love someone to put this to IDS, who will doubtless argue such people deserve their fate) to help such people. They invent the Work Programme, they give money hand over fist to unqualified and unprepared organisations to harass and bully the unemployed, punishing them for their position. Yet no help is offered once you’re out of that system, through a sanction. Does that make any sense? It’s the use of money, to put it crudely, as a weapon. This is reinforced by the revelation that full employment (in the true sense) is not desirable.
There is a strike on Thursday. It looks like it’s going to be a big one. Of course the BBC will be in full propaganda mode (this is the same organisation that denies the truth when reporting unemployment figures) with trolling throughout the day. Unfortunately one day alone isn’t going to cut it. We need the stomach to stay out for longer. Sadly since Thatcher broke the back of industrial action in the eighties there just isn’t the appetite. You can’t really blame people when they are facing a government that wields poverty as a tool against them.