Well, after 4 weeks of hell I have finally completed the dreaded ESA50. It is well and truely my own form, as I have printed out each answer and attached it to the relevant section (seeing as most of my replies are 3 pages long it was appropiate to do this i think). I have hopefully idiot (and DWP and ATOS) proofed it. I have written my name and national insurance number on each page, written on the form that I have attached my answer and written such helpful things as please open and please turn over on the relevant pages... but I am still fully expecting one of the answers that literally took blood sweat and tears to write to be lost somewhere along the way when its being read by multiple strangers in the next few weeks.
I have attached 5 pieces of medical evidence, I have pleaded and begged with them not to have a medical and why im a deserving candidate for the support group. I even used all those undisabled words such as suffer and cant and condition. Well, i had to play their game. But for the record, its experiences not sufferes, its despite of not cant and impairment not condition...
As its due in tomorrow I now have the interesting conundrum of trying to get it back to them. Helpfully, in the first letter they sent me, they enclosed an evenvelope. However, they seem to fail to comprehend that a disabled scrounger whose been given a form to detail how much they cant deal with paperwork and forms might lose this envelope and despite their helpful letter to me reminding me of the deadline last week, didnt enclose any hint of how to send it back, should i have lost the envelope.... which i have...
Cue another amuusing problem. The ESA50 experience has left me in extreme ammounts of distress and barely able to function over this last 4 weeks. So trying to get the information that I need to get this sent back is pretty impossible. The advice that the letter says is to simply ring them if you have any problems, or need an extension for that matter. When I am not well, I can't use the phone, which was surprise surprise a question on the old PCA (now gone from the ESA50). So the DWP are well aware that some people just cant use phones, and that this problem gets worse when a person is not well. Lets send the scrounger the most hellish paper based torture method imaginable and then force them to use the phone should they need any help. Im going to have to go in to their office to see them and hope they can help and not just point me in the direction of a phone...
I have tied their lovely form together with a lovely red ribbon for them, so I hope they appreicate that. It was tempting to put kisses on it, but I think that might have been pushing it. I should enclose an official looking letter from myself reminding them they have 4 weeks to make a decision on my claim now, see how that makes them feel... (and pigs will fly if i get something in 4 weeks, its taken them nearly 52 weeks to send me the form in the first place)
Tuesday, 24 July 2012
Wednesday, 18 July 2012
One week to go...
As the lovely people from ATOS reminded me I have one more week to fill in my ESA50. Although 4 weeks isn't really long enough and I am currently going through hell trying to force myself to fill it in, I dont have a choice. You see the lovely, thoughtful people at atos will extend the deadline for you, if you ring them up. Seeing as I cant actually communicate on the phone when Im in a bad way, and if anyones tryed filling in one of these things they will know that every time I pick up the pen to write it will suck more energy and take me more effort to write than the hardest university essays, im not doing so well at the moment.
One week left of this hell, and then I am sure it will be a long time for them to make a decision, or call me into a medical, which will be another period of hell to content with. I thought this was meant to be a lovely positive new approach, looking at what you can do instead of what you cant. But then, seeing as it feels like I can do so little at the moment (its the affects of this form, highlighting how bad your life really is) there wouldnt be much to write about.
Filling in the form, it has made me go through so many emotions. Feeling like I am not worth anything, and I cant do anything to even thinking that I am somehow lying and its really not all that bad. Never mind the medicals, atos should be laying on mental health counselors to help people cope with the stress of this process. To have to make myself so vulnerable, and so let strangers read and judge the most intimate and distressing parts of my life in order to get enough money to live on is utterly degrading. The doctors letters and medical information doeskin seem to be enough anymore and this form of almost torture seems to have been slipped in unnoticed by the public in the name of fairness. Well, if your average man in the street had to declare how many times they became incontinent and give a great amount of detail about the reasons why and how before they received income, there would be outcry.
If you havent seen an ESA form or what they ask, I encourage you to grab a copy from the DWP website, google ESA50 form, its a revelation. And dont think that the questions they are asking relate in any way to the points you are being scored on, because they simply don't. There is a whole raft of information on what they actually mean and how to fill out the forms, if you know where to look that is. It doesn't surprise me that so many people are failing to get ESA when the questionnaire they send is so confusing. Take for example this one. It asks if you can go out on your own? Well, yes I can thank you very much. But then if you look at the sub questions it actually contradicts itself and gives away what it actually means. Can you go to somewhere unfamilar to you on your own? well my answer to that is no I can't. And thats just one question.
Perhaps, if these forms actually asked the questions the decision makers and the DWP actually wanted to know there would be less stress over the medicals, and more accurate claims happening. The medical examination is only one part of the process. The ESA50 is just as flawed, but doesn't seem to get as much attention. In the same way that people are fighting for an end to the WCA shouldn't we also be demanding a change to the ESA50 fit for work questionnaire? to me, that in itself is not fit for purpose, ironically.
One week left of this hell, and then I am sure it will be a long time for them to make a decision, or call me into a medical, which will be another period of hell to content with. I thought this was meant to be a lovely positive new approach, looking at what you can do instead of what you cant. But then, seeing as it feels like I can do so little at the moment (its the affects of this form, highlighting how bad your life really is) there wouldnt be much to write about.
Filling in the form, it has made me go through so many emotions. Feeling like I am not worth anything, and I cant do anything to even thinking that I am somehow lying and its really not all that bad. Never mind the medicals, atos should be laying on mental health counselors to help people cope with the stress of this process. To have to make myself so vulnerable, and so let strangers read and judge the most intimate and distressing parts of my life in order to get enough money to live on is utterly degrading. The doctors letters and medical information doeskin seem to be enough anymore and this form of almost torture seems to have been slipped in unnoticed by the public in the name of fairness. Well, if your average man in the street had to declare how many times they became incontinent and give a great amount of detail about the reasons why and how before they received income, there would be outcry.
If you havent seen an ESA form or what they ask, I encourage you to grab a copy from the DWP website, google ESA50 form, its a revelation. And dont think that the questions they are asking relate in any way to the points you are being scored on, because they simply don't. There is a whole raft of information on what they actually mean and how to fill out the forms, if you know where to look that is. It doesn't surprise me that so many people are failing to get ESA when the questionnaire they send is so confusing. Take for example this one. It asks if you can go out on your own? Well, yes I can thank you very much. But then if you look at the sub questions it actually contradicts itself and gives away what it actually means. Can you go to somewhere unfamilar to you on your own? well my answer to that is no I can't. And thats just one question.
Perhaps, if these forms actually asked the questions the decision makers and the DWP actually wanted to know there would be less stress over the medicals, and more accurate claims happening. The medical examination is only one part of the process. The ESA50 is just as flawed, but doesn't seem to get as much attention. In the same way that people are fighting for an end to the WCA shouldn't we also be demanding a change to the ESA50 fit for work questionnaire? to me, that in itself is not fit for purpose, ironically.
Thursday, 28 June 2012
Choices about food...
This is a little different to my usual blog, but I hope its still interesting, and it is linked to disability...
5 weeks or so ago I ate whatever and whenever I liked. I knew, and accepted that I was overweight, but didnt really know what to do about it, or even if I wanted to, after all there was no harm in it right? I thought I was doing alright and that it was a choice that I was making to not really worry too much about food, or my lifestyle. That the reasons lay completely with me and the choices I made.
And then, I joined up to this slimming group, and it shocked me, and continues to shock me how hard it actually is to choose to eat healthy food, both indoors and especially when I am out. I have now got some control over what I eat and the choices I make, but it is really hard to do so.
Take for example mc donalds. I can still go in there, but am restricted to either a chicken nugget happy meal and diet drink (but then I have to be careful what I eat the rest of the day) or a salad, which is still not perfect. Its the same everywhere, even down to places like a sushi bar that tend to cook their stuff in the deep fat fryer. Sandwich shops that use mayo and butter etc etc.
Isn't it scary when even a kids meal from a fast food outlet is too high in bad stuff for a proper balanced diet? And its not like its hard to be healthy when I'm doing it myself. I can still have burgers and chips (cooked with cooking spray that is) and lasagne and pizza and even chocolate (little bits of that though :) There are alternatives to everything unhealthy, which makes them really healthy.
So, what is it then? If I can't go into town without having a meal in my bag ready prepared to keep myself from eating junk, then surely it can't be totally my fault as to how I used to eat so badly?
All this questioning and searching reminded me of something else that I know a lot about. The social model of disability. Basically stating that it is society disables us and that disability can be significantly reduced by adapting and changing the environment etc. All of a sudden the problem (and the solution) didn't actually come from disabled people themselves, but from wider societies deficit and inability to intergrate and include everyone.
So, relating the social model of disability to the bad food choices that are on offer in a typical town, then surely it isn't actually the people themselves but the environment and societies expectations and structures that are at fault? If Mcdonalds started providing healthy alternatives to their menu, or changed their cooking styles to reflect the need to be healthy then would things start to change?
People will still have the ability to make bad food choices, but by providing good food choices then it no longer becomes a restricted environment for healthy eaters. If the social model of disability has encouraged a change in societies attitudes to disabled people, then surely thinking about obesity in the same context would also encourage a shift in attitudes towards food and lifestyle?
5 weeks or so ago I ate whatever and whenever I liked. I knew, and accepted that I was overweight, but didnt really know what to do about it, or even if I wanted to, after all there was no harm in it right? I thought I was doing alright and that it was a choice that I was making to not really worry too much about food, or my lifestyle. That the reasons lay completely with me and the choices I made.
And then, I joined up to this slimming group, and it shocked me, and continues to shock me how hard it actually is to choose to eat healthy food, both indoors and especially when I am out. I have now got some control over what I eat and the choices I make, but it is really hard to do so.
Take for example mc donalds. I can still go in there, but am restricted to either a chicken nugget happy meal and diet drink (but then I have to be careful what I eat the rest of the day) or a salad, which is still not perfect. Its the same everywhere, even down to places like a sushi bar that tend to cook their stuff in the deep fat fryer. Sandwich shops that use mayo and butter etc etc.
Isn't it scary when even a kids meal from a fast food outlet is too high in bad stuff for a proper balanced diet? And its not like its hard to be healthy when I'm doing it myself. I can still have burgers and chips (cooked with cooking spray that is) and lasagne and pizza and even chocolate (little bits of that though :) There are alternatives to everything unhealthy, which makes them really healthy.
So, what is it then? If I can't go into town without having a meal in my bag ready prepared to keep myself from eating junk, then surely it can't be totally my fault as to how I used to eat so badly?
All this questioning and searching reminded me of something else that I know a lot about. The social model of disability. Basically stating that it is society disables us and that disability can be significantly reduced by adapting and changing the environment etc. All of a sudden the problem (and the solution) didn't actually come from disabled people themselves, but from wider societies deficit and inability to intergrate and include everyone.
So, relating the social model of disability to the bad food choices that are on offer in a typical town, then surely it isn't actually the people themselves but the environment and societies expectations and structures that are at fault? If Mcdonalds started providing healthy alternatives to their menu, or changed their cooking styles to reflect the need to be healthy then would things start to change?
People will still have the ability to make bad food choices, but by providing good food choices then it no longer becomes a restricted environment for healthy eaters. If the social model of disability has encouraged a change in societies attitudes to disabled people, then surely thinking about obesity in the same context would also encourage a shift in attitudes towards food and lifestyle?
Thursday, 14 June 2012
yesterday.
Yesterday was a bad day all round.
I posted a few times and just want to copy my messages over to my own blog to keep a record of it all in one place...
I have just been to the GP, who has upset me greatly. he has referred me to neuro, but reckons its pseudo seizures, which basically means hes not taking it seriously, because he cant even misdiagnose me properly. its called dissociative seizures ffs.
reckons itl take a few weeks. until then?
nothing.
nada.
zero.
Today, which has truely been horrendous I have hardly fitted, but more dissociated and only had a fit tonight after no periods of high stress.
Ironically, the doctor seems to have reffered me to the right place, so thats a small bonus. But to be constantly told I am somehow faking it, or its not really epilepsy is gridning me down.
but today I have been out for an hour, probably further than I should have and had a pretty good day so far.
My normal bloging style will resume shortly, at the moment im just using this to let it all out.
I posted a few times and just want to copy my messages over to my own blog to keep a record of it all in one place...
I have just been to the GP, who has upset me greatly. he has referred me to neuro, but reckons its pseudo seizures, which basically means hes not taking it seriously, because he cant even misdiagnose me properly. its called dissociative seizures ffs.
reckons itl take a few weeks. until then?
nothing.
nada.
zero.
Today, which has truely been horrendous I have hardly fitted, but more dissociated and only had a fit tonight after no periods of high stress.
Ironically, the doctor seems to have reffered me to the right place, so thats a small bonus. But to be constantly told I am somehow faking it, or its not really epilepsy is gridning me down.
but today I have been out for an hour, probably further than I should have and had a pretty good day so far.
My normal bloging style will resume shortly, at the moment im just using this to let it all out.
Wednesday, 13 June 2012
the black hole
i am sorry if this is a bit rambly but im currently lying down and typing on fingered as im recovering from yet another one of those horrible nasty fits.
i was having thoughts about that black hole time between initial symptoms, diagnosis and eventual treatment.
For my mental health problems, I had my first symptons at 16, diagnosed at 21 and eventually got treatment age 26. All through this time I was in constant ned of police, ambulance, hospital, benefits, people support etc. My impairment didn't stay in a nice comfy stasis waiting for this treatment, but went to the extreme end of bad, meaning that the first year of my treatment was spent undoing all the bad things that have happened since first symptoms.
and then, moving on to my current situation. If you look at my last 2 posts I have been fitting since the sunday before last. The toll this is taking on my body as well as my mental health is immense. I know that I am also trying to eat better, but a loss of 5 pounds in one week is a bit extreme and can only be put down to the fitting. From what little there is on the internet (ie a sentence) a one minute fit can be the equilant of a days exercise. I am having at least 3 of these, sometimes lasting 5 minutes.
Unfortunately, on discharge the hospital didn't refer me to neurology as promised. They have just sent a letter to the GP to do it themselves. Unfortunately, they wont refer me until they have spoken to me. Unfortunately I have had to go 3 counties away because I realisticly cant be left on my own and this is the closest 24/7 support I can get. Travelling back to home is really hard because I am so exhausted and its quite a way away, plus as I am a stubborn wotsit I dont like relying on other people, and even being looked after is a bit horrible for me.
I feel like I'm in a black hole. The awkard time between symptoms and treatment. I NEED help with this fitting, its having a negative impact on my overall wellbeing, as well as the potential of physical damage from fitting. I can't get anything for this until I get diagnosed and treatment, and yet by being not well I cant realisticaly access these things to do this.
I just hope it doesn't last as long as it did for my mental health problems.
i was having thoughts about that black hole time between initial symptoms, diagnosis and eventual treatment.
For my mental health problems, I had my first symptons at 16, diagnosed at 21 and eventually got treatment age 26. All through this time I was in constant ned of police, ambulance, hospital, benefits, people support etc. My impairment didn't stay in a nice comfy stasis waiting for this treatment, but went to the extreme end of bad, meaning that the first year of my treatment was spent undoing all the bad things that have happened since first symptoms.
and then, moving on to my current situation. If you look at my last 2 posts I have been fitting since the sunday before last. The toll this is taking on my body as well as my mental health is immense. I know that I am also trying to eat better, but a loss of 5 pounds in one week is a bit extreme and can only be put down to the fitting. From what little there is on the internet (ie a sentence) a one minute fit can be the equilant of a days exercise. I am having at least 3 of these, sometimes lasting 5 minutes.
Unfortunately, on discharge the hospital didn't refer me to neurology as promised. They have just sent a letter to the GP to do it themselves. Unfortunately, they wont refer me until they have spoken to me. Unfortunately I have had to go 3 counties away because I realisticly cant be left on my own and this is the closest 24/7 support I can get. Travelling back to home is really hard because I am so exhausted and its quite a way away, plus as I am a stubborn wotsit I dont like relying on other people, and even being looked after is a bit horrible for me.
I feel like I'm in a black hole. The awkard time between symptoms and treatment. I NEED help with this fitting, its having a negative impact on my overall wellbeing, as well as the potential of physical damage from fitting. I can't get anything for this until I get diagnosed and treatment, and yet by being not well I cant realisticaly access these things to do this.
I just hope it doesn't last as long as it did for my mental health problems.
Monday, 11 June 2012
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.
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.
Wednesday, 6 June 2012
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
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
Subscribe to:
Posts (Atom)