Who decides what is or what is not a medical condition?

[stalin's dead]

It's me again!!

 

Sorry, about this but I need clarification on some points

 

My epilepsy is nocturnal ie i suffer seizures when asleep (though I have suffered them while awake). At my appeal tribunal they appeared to suggest that nocturnal epilepsy and 'daytime' epilepsy (while awake) are totally different and that one involves a loss of consciousness (daytime fits) and the other (nocturanl epilepsy) does not.They appear to believe that being asleep equals being unconscious which is simply ridiculous. That is the inference that I came away with from the appeal. Now this is utter ignorance on a grand scale

 

Having a seziure while asleep means you are unconscious which is not the same as being asleep but the ignoramous's at the appeal appeared not to understand this.

 

I need to know how the DWP differentiate between the various type of epilepsy because I suspect ignorance could undermine my case which is simply not acceptable

 

Nocturnal epilepsy involves a loss of consciousness - fact..the appeal people appeared not to agree with this and I want to challenge this sheer ignorance

 

many thanks

 

apologies for another thread

 

any advice appreciated

 

sd

[leemack]

The descriptor is 'remaining concious during waking moments', which implies unfortunately that you need to be awake before you become unconcious. This is one of the areas where the test is harsher than it used to be.

 

Are there other descriptors you can score points on?

[stalin's dead]

Just another question:

 

Do the DWP take into account previous ESA50 submissions when assessing a current claim ie will they look at your history of applications and what you wrote in them or are they by law forced to base a current decision simply on the evidence provided by you in the 'active' ESA50?

 

thanks

[watchinginvestigation2011]

What does it do to your during the day as in are you exhausted and have to sleep, yet can get the loo?

 

Do you need supervision?

 

Its hard as some with what you have are still allowed their drivers license etc..... so though fit during the night okay day

 

Mine happen any time its really a pain in the butt, but although you have valid conditoin, wonder if its down to the ammount of care you need when recovering.

 

I saw actor acting solicitor on the telly where in the drama his dog would spin around in circles when he knew he was about to collapse prior to man himself knowing, and he knew therefore to get to safe spot. He duly collpased rather badly as didnt get to safe spot in time and withing minutes he was on his feet back in the court again doing his job, despite others saying are you sure you are okay. I was shocked to find some epeileptics according to this drama anyhow recovred so quickly and thought I would prefer that than mine.

 

Hard as you know we are seen with two arms and legs and they will want to not look deeper than that, the fact you can feel safe no fits happen during the day normally I suppose they are not considering the fact you may be so so tired during the day due to it. But we are all different.

 

To be honest I think its just as hard for an epileptic like me to get past the test without tribunal, so my kids some time ago when needing to redo a claim (Iknew they planeed to do it) but didnt know when I would next collapse, record one happening and my state afterwards, I only wathed a few seconds as it felt that she was a different person and I to be honest was quite distrubed by it for some time with no idea myself what went on, I luckily only knew the pain and tiredness afterwards sleeping for some time in most cases and also on other occassion being bed bound for some time depending on I suspect wether I had stopped breathing or had more than one in a short period.

 

Point is I will take the camera and ask them to understand how such a person could hold a job when not aware when next to collapse and see if they could at least look at it, because I know I cant again.

 

Made me also see how great my kids were as carers and what they had to do, I had no idea as often cant remember periods of time as in they would help me to the loo when able as not able to get there myself. Other times I wander off in a state not knowing who I am and have set cooker on fire and put clothes in dishwasher and crockery in washing machine and turned them on:!:

 

I can insist again and again I dont do that, but the camera showed what I got up to and its quite depressing.

 

Thas another issue have you told them if you ahve any issues as a result of what happenes, not saying you are like me but deep depression is linked with epilpesy.

 

I mean others are seen as fit enough to hold drivers licenese and do work so again we are all different.

 

Have you thought of contacting the epilepsy foundation I believe it is called and see if they can offer any help. NOt the usa one but the uk one.

 

I mean me and this is no knock to your condition, but if it as possbile to have the seizres only when slept and be fit for the day in the most part I would jump at the chance. But then again I dont fully understand how it effects you and what you go through, you need to tell them all the ins and outs. I went years with not wanting to tell anyone and although still hide away for number of issues, but it was the dwp who told me I needed help as they had come to my house, i didnt even know you could get help.

 

Its such a shame they have gone form genuinely offering support to those in genuine need to that of makin us ashamed of our conditions, as some like me already are and feel it my fault.

 

Right i have ranted on again, sorry, but did you go into the nitty gritty with them?

 

One big issue is are you okay getting to the loo, are you capable of doing that when needed, if you have to rely on pads, tell them the extent, as ashamed as i was I was told tell all.

 

With me the firebrigade who were called out suggested I should be monitored more when ill as could have burnt the house down or badly burnt myself. It was only my son ripping my top of me which was on fire that saved me form more than minor discomfort, for that he got me panicking not aware of what going on and hitting him to go away. I had no comprehension I had just set the cooker on fire, infact had to be reassured I am not going senile xx

 

Really hope you get the help you need, I have to go through it soon and the only way I am dealing with it is to expect failure and then appeal with as much info and help as can. Also finding it hard at the moment realising people take advantage of me when ill and realising cant rust anyone for anything, but then I am getting weird there as my conditon is also linked mentally apparantly.

 

At least we have this site hey xx

 

xx

Edited April 30, 2011 by watchinginvestigation2011

[leemack]

They may look at previous esa50's, but as circumstances can change, they would have to accept things may have changed since then. Why?

[Nystagmite]

What problems does the epilepsy cause? I know when I had my seizure, (I've had just the one, thankfully) I woke up with migraine and suffered with migraine for about 3 years after. My memory is affected too.

[watchinginvestigation2011]

Dont mean to be nosey but have they done a brain scan on you or eeg?

 

 

I remember when well enough to go home from the hospital up north I had to go to my own hospital and they made me stay in and sleep there with monitors on my head through night and day then did brain scans, think I was in for a couple of days then give diagnosis a few weeks later when saw consultant again.

 

Think they have to first rule out more sinister causes.

 

I mean I have seizures and am not aware so could you poss be havng more during night that need to alert doctor to, hence the migraines.

 

You know I reckon if keeled over in front of atos they would find us fit for work based on whilst down there could dust the floor:jaw:

 

Probably awake to find they had donated the duster in hand. Sad really but have to laugh at them and hope we see real doctors there soon. How can a midwife judge a mental or neurological condition?