Epilepsy and ppi

born_again

fred246 said:

I had POA for an elderly couple who received over £400 a month in disability benefits. Their spending on disability £0. I went through all their bank statements. Not a penny. 

Wow. I can't believe I've just read that. (I'll stop at that)
How do you define spending on their disability?

Mrs has MS. We have had to buy a wheelchair, mobility scooter & had many adaptions around the house to allow her to manage some form of normal life. We spend more on heating as cold effects her a lot. All of these were paid out of our own pockets.

I have had to give up work to look after her. How do I claim that back? You do not get receipts for stuff like that.
We now get lower level PIP. I'm awaiting a career claim.
Even then we are thousands a year down on my wage.

Perhaps you need to take a step back and rethink posting on something that is such a emotive subject.

Gig1968

I some how dont think he will retract his posting.

Alice_Holt

 Gig1968 said
I read a judge's decision from I think it was from 2017 or 2019 about epilepsy and safety and that the dwp had to take into account more likely or not that a fit would occur or something I'm hoping I might fit into that category...I get no warning. 

     The DWP should consider the severity of the risk (rather than frequency of occurrence).  Here is some more info on that ruling:
 https://www.gov.uk/government/publications/personal-independence-payment-changes/safety-and-supervision-changes-to-pip-law-from-9-march-2017
https://www.benefitsandwork.co.uk/news/3611-safety-and-supervison-ruling-could-mean-pip-for-many-more-claimants
https://cpag.org.uk/welfare-rights/resources/article/%E2%80%98safely%E2%80%99-personal-independence-payment

On your form and at an assessment it is important to stress that if there is a real possibility of harm occurring (give examples), that you cannot be considered to be able to undertake PIP activities safely, and that you cannot mitigate that risk - " I get no warning."
If on review of your form, you feel you didn't make this clear - then I suggest you follow up with more info explaining the severity of the risk very clearly include examples, testimony from family / friends / carers, and relevant pages from your surgery medical notes (i.e ambulance call outs). [Google obtaining your Surgery Medical notes free of charge under GDPR.]
Due to COVID19 your assessment is likely to be delayed, so you should be able to add more information to your PIP2 form.
If PIP not awarded, then appeal that decision.


As an aside I used to post regularly on MSE forums, as I have some knowledge of the benefits system and was aware some people have difficulty accessing Citizens Advice / Welfare Rights.  It concerned me that MSE Towers didn't moderate these benefit forums since misleading / provocative posts were not removed; in fact (in some forumites opinion) examples might be seen on this thread.
Since MSE Towers appear to be more concerned with "unfriendly posts" rather than the veracity of any information given. It then becomes rather a fine line for well intentioned MSE'rs in clearly calling out posts which are misleading / provocative / full of false anecdotal histories, whilst still maintaining a "friendly" tone. 
Having been yellow carded by MSE Towers for taking a poster to task on misleading information, I now rarely post here.
(But still believe MSE should properly managing and moderate these benefit forums which are frequently accessed by vulnerable posters).        

[Deleted User]

Well said AH, agree 100%, there are it seems quite a few of us that don't post as often on MSE, personally I would suggest that people wanting benefits advice/support in a friendly forum take a look at the "Scope" forums/website.

Gig1968

Thanks for your comments . I enclosed many documents including  several discharge letters . Some of them are from when I had several fits in different public places like a couple of shops and walking in the street.  I also sent in several consultants letters which within the text  included the severity and number of seizures I had been having and sometimes where I had been having them. I am visiting consultant every three months right now. I had a fit whilst standing talking to a guy in hospital fortunately my fall was broken by the bed but still ended up on the floor had a cut on my head and dislocated my finger. . I was taken for an  xray for a check up as a fall in hospital has to be recorded as in case anything further comes from it. Falls within hospitals areca recordable statistic. On all my discharge notes they state they say I am at risk of falls. I have read the form over and over again and I don't believe it is designed in anyway for people with EPILEPSY.  I'm not just talking about my case I'm talking about the disease in general . How can you judge the severity and the risk of an epileptic to complete tasks and to be able to complete journeys safely. Would you make a rule that a seizure a month fitted the criteria I don't know.  
All I know from a personal point of view having spent 3 months out of the last 12 in hospital it certainly changes life. But maybe by additional things that are not included on that form. Just my thought that's all. Your thoughts very welcome. Sent form April 1 I think

Spoonie_Turtle

Generally, I think severity of risk can only be judged on a case-by-case basis. If someone has absence seizures without motor involvement for a couple of minutes each time, the risk is obviously much less severe compared to someone who has tonic-clonic seizures lasting half an hour of the same frequency - for instance. (Although with the absence seizures, things like crossing the road could still be a risk, especially if they happen every day.) It's also about whether one can avoid the risk whilst living a reasonably 'normal' life, and again that's only really able to be judged on a case-by-case basis because everybody's exact circumstances are different.

Epilepsy is definitely covered in the legislation but it's hard to have a form that's conducive to easily understanding how to fill it in about all the possible different conditions. It's almost, one size but fits none!

Gig1968

Interesting comment on abscence seizures and crossing the road now that's scary. Even one seizure a month would mean that they have a massive risk. That's why epilepsy is a hidden disease considered under the legislation but not fully understood. I'm generally really careful when I come out of  hospital for a week no cookers, not much water in a bath , careful when climbing stairs ( they are really dangerous but are really not mentioned on the form ).  Really don't go out for a week. I guess I get scared who wouldn't . But I won't let it beat me. I have the attitude whatever will be will be.  I know I have a horrible disease but I woukd take that above some of the even worse diseases i have seen on other people in the neurological wards I have been in hospital. It makes me feel lucky.

[Deleted User]

One of the reason for face 2 face assessments (in normal times) is to flesh out (so to speak) the details/problems you have due to your epilepsy. Gig1968 have you ever been made aware of the dangers of SUDEP?
Personally I'm not an epileptic but a person with epilepsy.

Gig1968

Hi again . Unfortunately I am aware of SUDEP.  I am also sadly aware of the huge dangers of status epliectus ( sorry im crap at spelling). Four times I have experienced this life threatening situation which involves you waking up and finding hoards of doctors and nurses around you poking and proding you.  I have had a nasotrocheal tube inserted into me as my oxygen was so low and I was heading to ICU before I came round. What did you mean by your last comment I wasn't sure I understood? I know it's a deadly disease or can be but that's life

[Deleted User]

I've been lucky and only had one status episode, it lasted six hours and 24 hours later whilst in hospital i stopped breathing and spent a week in I.C.