I am really not making it up...

Back story here: http://allbigideas.blogspot.com/2012/06/im-not-making-it-up.html

I don't want to type this blog. It is very hard to admit the reality of whats happened over the last few days, especially in the context of what happened this time last week.

I have more than likely got epilepsy.

That is, I haven't got anything more serious, and from whats been described to the doctors it sounds like epilepsy.

Yes, I have been back to the hospital. A different one this time, with much more success. In that I was believed. I was given a CT scan and admitted over night, and have been referred to outpatient neurology for an appointment.

Unfortunately, until I get properly sorted its still uncontrollable, and I am still having them pretty regular, but at least I am being taken seriously, and being looked after.

I am going to write and complain to the original hospital, with probably even more weight behind me now than before....

But yes, now I am having to accept and face up to the prospect of living with epilepsy.

im not making it up

I'm not making it up. Although to what that statement refers to im not quite sure. Seeing as I have no memory of what im not making up I can't confirm or deny its existance. Apart from the after effects that is.

Imagine the aftermath of an earthquake. Although only lasting a few minutes, the lasting damage and subsequent recovery takes a lot longer to do. And then sometimes the aftershocks are can be just as big and damaging as the original and you have to go back and start again with the recovery.

Its a pretty accurate description of my experience over the last few days. Although my earthquakes are fits and the aftershocks more fits. Everytime I think I am ok I have another  and it puts me back to square one again.

Unfortunately I'v had to say I'm not making it up a lot over the last few days. The sad fact is that I have been taken to hospital twice, (once because I had been fitting for over five minutes) and on both occasions been told i am making it up. If this wasnt worrying enough as it is, to hear this from a nurse, who is meant to be responsible for my care is pretty distressing, and ironically probably causing it to happen again.

Unfortunately its not the first time iv been told this. The last time, it was a paramedic, back in 2004. He caused me to lose all my friends that I had just made at uni. Luckily this time my friends actually believe me, and so did the 2 paramedics and nurse that actually witnessed.

Yes, I have a condition known as non epileptic attack disorder. However, this is a significantly different condition to whats been happening over the last few days. During those episodes I usually black outcompletly and don't actually fit. And it doesn't usually happen in quick succession like these have been. Or leave me so exhausted I cant even walk across the room.

So yes, here I am completely  unsure of whats actually going on, and with the hospital refusing to investigate or take me seriously I am completely stuck. The scary thing is if there is something physically wrong and they've missed it then it could end badly. To even consider the possibility that Im making it up would make me out to be a a very sick person, and probably something that should have been investigated in itself. By hey, I keep saying, I'm not making it up.
(for an update see here:)
 http://allbigideas.blogspot.com/2012/06/i-am-really-not-making-it-up.html

my ESA journey

I made a decision this morning, perhaps some would call it foolish, others brave.

I rang up and actually asked the dwp where my esa50 is. They are going to send it me in the post and apolgised for the delay. I have been on benefit since September so its well over due.

I decided to do this because it puts me in control. I have just finished uni for the year so I have time to fill it in over summer. Its no longer the fear of the unknown, but I at least know I'm going to get the form soon.

I want to write here  about my journey, as I recently blogged (why do we tweet) it will turn this experience from being a personal and nightmarish experience into a politcally motivated and activists struggle for benefits.

If it helps anyone else then its all good, but this is for my personal sanity as well. Feel free comment and stuff, I'm just going to use this blog to journal my experience.

Always complain

Always complain, I wrote a letter of complaint about my treatment on the bus 2 weeks ago. I was travelling on my own, but my bus pass has a +Carer, so if I need to, I can travel with someone else on my pass. The bus driver told me that I shouldn't be travelling on my own with my pass, and his attitude left me feeling really horrible... heres the reply

Why do we tweet?

 If you haven't read this, I recommend it.

http://www.latentexistence.me.uk/sue-marsh-given-wrong-drug-and-nurse-refused-to-change-it-agony-instead-of-pain-relief/

I have only just got to it today, having spent the last week buried under a mountain of essay writing. There was a comment that got to me, and got me thinking. Here is a screenshot..

Basicaly this person doesn't believe that Sue would have access to a phone or tweet in hospital, especially in certain areas.

Having read the tweets it reminded me of a week ago, where I had a very bad experience on the bus.

https://twitter.com/#!/allbigideas/status/199858375981400064


https://twitter.com/#!/allbigideas/status/199864642565177344

I tweeted it, and as the second tweet shows, it was the only way I got through it. By tweeting about it it became political, not personal. It was disablist of the bus driver to treat me like that, and it was wrong. By putting into public it didn't stay within me, but became a part of everyones struggle and another reason why we need to see changes.

Twitter is a fantastically enabling environment. You only need to look at the hashtag #frombedactivism. 
to see why (theres a better hashtag I just cant rememberit). The concept behind this is that even from your 'sickbed' you can still make a difference, your voice can still be heard. Twitter is only 140 characters. If you have to dictate it, speak it, one finger type it, its still possible. You can use a mobile, a netbook, a laptop, a pc, a tablet etc etc. to get your voice heard. It works, you only need to look to spartacus report to see the power of twitter.

As someone from the hardest hit rally that Iwent to last october said in her TV interview... "this is the only thing thats making me feel better, that Im doing something about it"  (1.40)http://s516.photobucket.com/albums/u327/LuciasWoodhouse/Hardest%20hit%20Leeds/?action=view&current=FirefoxScreenSnapz001.mp4

Paying for advice and help when claiming benefits.

I accidentally started an argument the other day, and I was too busy to return to it, however, seeing as it has just become national news again, I thought I would give it a go..

Is it right to pay for benefits advice?

I don't think it is. Purely on principle. I really genuinely believe that at the point that someone needs to claim benefits is a time that they are in a vulnerable position and prone to being exploited. Although I know there are some genuinely decent ways to get benefits advice, someone who has just lost their job, recently become disabled etc. is in no position to work out who and what is decent.

In recent years the citizens advice bearau and similar have become increasingly rare. Thanks to government cuts the trend is likely to continue. These services are funded in various ways, but at the point of delivery they are free.

The people who need benefits advice are those who have had an unfair decision against them, or perhaps even applying for the first time. Money isn't generally something they have a lot of, otherwise they wouldn't be applying for benefits.

To expect them to pay for the privilege of getting a benefit to which they should be entitled to, is attacking the problem from the wrong angle. Surely, instead of is it right to pay for benefits advice, its better to ask, why are people in need of benefits advice in the first place?

Unfortunately, however the government try to simplify benefits it will always be inherently complex. There will always be conditions of entitlement, and always exceptions to the rule, and rules to the exception. Not only will there be conditions of entitlement, there will be other factors motivating the claim to go a particular way. As is the case with the new sick benefits, where the government has time and time again said that they want to reduce the case load. However, it results in stories like this:
http://www.guardian.co.uk/society/2012/mar/19/sickness-benefit-try-avoid-paying

What is even more sickening is the current trend in the jobcentres that results in the most vulnerable being sanctioned because they are seen as 'easy targets'. This coming from a DWP whistle blower in this article here:  http://www.guardian.co.uk/politics/2011/apr/01/jobcentres-tricking-people-benefit-sanctions. These claimants, often with complex needs are being denied benefits for up to six months at a time. It would sicken me further to think that these people who have been screwed by the government would then be denied access to any advice because they can't afford to pay.

I know these things cost money, and I know that has to come from somewhere, but shouldn't it come from the very government who administers the benefits and not the people who need the benefits?

I am against charity too, mainly because it then becomes about the deserving and non deserving.  Benefits advice should be free at the point of need, available to all who need it. Especially with the increase of appeals against some benefits, without some serious investment, or increases within legal aid and other sources of income then people will be forced to pay for a service they desperately need. My question is, what will they pay with?

The government’s proposal to use independent medical professionals to decide who does and doesn’t get the new DLA is the best solution.

Position statement:  The government’s proposal to use independent medical professionals to decide who does and doesn’t get the new DLA is the best solution. (just one sided, a summary of key points)

The inevitable, inescapable future is that Disability Living Allowance (DLA) is going to be replaced with a new benefit called Personal Independence Payment (PIP) (DWP 2012d). One of the big changes will be in the application process. No longer will disabled people have to fill in a 60-page tome about every depressing aspect of their existence, but according to the government anyway, be free to have a 'chat' with an independent assessor to determine eligibility (DWP 2012b, Great Britain, Work and Pensions Committee 2012c). Sounds great right? No, it isn't. The government might have dressed it up to look good, but the reality of this idea, and the fear that people have is deeply entrenched thanks to the Work Capability Assessment, the new medicals for the new incapacity benefit. According to Gentleman (2011b) even the mere mention of the provider ATOS, “triggers… a sense of "fear and loathing". Although the government says they are 'learning' from the mistakes of this, they still intend to use this model in the new benefit delivery (Hc Deb 2012).  That would be the medicals that even the designer and creator have condemned (Gentleman 2011a). So, what are the problems?

Firstly, the problem is that the governments definition of independence seems to have found from a dictionary that none of the British public are privy to (DWP 2012d). True independence can only be found when a person is doing something without influence from another person (Abberley 2004: see below). This is not the case with the government’s proposals. As with the previous incarnation of the new style medical that was outsourced to a private provider, it has just been announced that this will be the case for PIP (DWP 2012c) . It is in this monetary transaction that independence is traded in for profit. The company’s clients are the government, their contract is with them, and it is in their best interests to comply with their client’s orders. As it is the stated aims of the government’s new PIP to reduce the caseload and expenditure (DWP 2012b), that is what will also be the companies’ aims, and the statistics will reflect this. (As has happened with the new sickness benefits (Gentleman 2011b)

By implication, the government’s proposal casts doubt on the independence of the current system. In fact, they have even alluded to this themselves (Scope 2011,  Great Britain, Work and Pensions Committee 2012c). Apart from the detailed, 60 page form that claimants have to fill in, there is also room for a 'statement from someone who knows you best', (something the government is getting rid of in the new process (Campbell et al. 2012) and the opportunity for a person to nominate a medical professional to present evidence. In fact, by obtaining evidence from all these sources reduces the risk of a bad decision being made, and increases the independence and equality in the process (Campbell et al. 2012). There is even provision for another medical assessment to be made in house by the DWP if the decision maker doesn't feel able to make a decision based on the evidence they have  (Great Britain, Work andPensions Committee 2012c). I would argue that the current application process is more independent that what is being proposed, and that if the governments aim was that of true independence then they should simply expand their in house medical services, but keep the ethos of the current benefit, where the claimants needs and voice are placed firmly in the centre (Great Britain, Workand Pensions Committee 2012b).

The second thing that is at risk with the proposed changes to Disability Living Allowance is autonomy and authenticity. Although the current system cannot be classed as wholly autonomous or even authentic, what it does do is directly involve disabled people and values their voice in making a decision about eligibility (Great Britain, Work and Pensions Committee 2012b). The phrase “nothing about us without us”  (McGettrick 1994) has become one of the key principals of the disability movement and it is increasingly being adopted by different areas in society including the application process for DLA (Great Britain, Workand Pensions Committee 2012b). The current ideology around this is that the claimant and their own medical professionals are the most authentic agents to provide a true picture of how their disability affects them (Great Britain,Work and Pensions Committee 2012b). Contrary to popular opinion as seen with headlines such as “Disabled benefit? Just fill in a form” (Walker 2011), the application process is complex and uses many different pieces of evidence to support a claim (DWP no date). The focus isn’t medicalised, but on the effect of impairment on a person’s life (Scope 2011). The medical professionals current role is to simply verify the authenticity of the impairment and to provide any additional supporting evidence (DWP no date). According to the government a “major objective of DLA was to introduce self-assessment, to enable disabled people to describe the impacts of their disabilities rather than be subject to routine medical assessments” (Great Britain, Work and Pensions Committee (2012b) this results in the claimant having the autonomy to define their own experience within the confines of the other evidence gathered. The result is that the system is effective with only a 0.5% rate of fraud (Campbell et al. 2012, DWP 2012a). The proposals to take away the claimants autonomy in the process will result in a shift of power to the medical professionals (Great Britain, Work and Pensions Committee 2012b).

It is this shift in the power balance that is the third fatal flaw of this proposal that needs highlighting.  This was another concern raised in the responsible reform report (Campbell et al. 2012). For disabled people, the ability to be in control and have some power over their lives is key to their independence (Swain, French and Cameron 2003: see below). This concept of self-determination is another key principal in the disability movement (Campbell and Oliver 1996: see below). It is another thing, which is under threat by the government’s proposal to give decision-making power to ‘independent’ doctors (DWP 2012d). The government has justified this distinct shift in power away from the claimant with fairness in mind (Gentleman 2011c). However, according to Campbell (2012, p21) “the new system appears to give equal if not more weight to the opinion of medical or independent professionals and none at all to the people around the disabled person.” This will result is an unbalanced and rigid system of medical professionals unable to cope with the complexities of a disabled persons experience, whose sole responsibility is to determine eligibility. By reducing the ‘gatekeepers’ to the benefit to just independent medical professionals increases their power, responsibility and control exponentially (Abberley 2004: see below). This will increase the risk of mistakes and poor decision-making. According to the responsible reform report (Campbellet al. 2012) the fear is that this proposal is too similar to the current sickness benefit system that has been widely acknowledged as failing (40% appeal success rate is evidence of this (Gentleman 2011b). Important decisions need to be made with as many stakeholders as possible. This reduces power to one agency and spreads it more evenly (Abberley 2004: see below). This results in the claimant having some degree of control over their own experiences.

Ultimately, the decision to use independent medical professionals to determine who does and doesn’t receive disability benefits is fatally flawed, and is widely feared (Gentleman 20011c, Campbell etal. 2012). With the governments publicly declared aim to reduce the caseload by 20% (DWP 2011e) when the fraud rate is at 0.5% (DWP 2012a), 500,000 disabled people will be taken off a benefit to which they were previously entitled (Grey-Thomspon 2012). To use independent medical professionals will unfairly target people with certain impairments who find it difficult to define, easily shape and share their experiences (Campbell et al. 2012). It will be a shift away from a benefit with disabled people at the centre of the decision making process and will result in a loss of power, control and ultimately a persons ability to live.

 

Abberley, Paul, 2004. A critique of professional support and intervention. In Swain, John et al, Disabling barriers- enabling environments. London, Sage Publications Ltd. (239-244)

 

Campbell, Jane and Oliver, Mike (1996). Disability politics, Understanding our past, changing our future. 

Swain, John French, Sally and Cameron, Colin (2003). Controversial issues in a Disabling society. Open university press, Buckingham.  (76-86)