Epilepsy and PIP — Scope | Disability forum
Find out how to let us know if you're concerned about another member's safety.

Epilepsy and PIP

michfinch
michfinch Member Posts: 173 Pioneering
I was turned down for PIP even though my memory is worsening along with my Epilepsy. I talked to my local MP’s Assistant about it all. I now know Epileptics are being reconsidered. I don’t know if anyone else finds it a minefield.... I was a successful Businesswoman then I had a near nervous breakdown and Epilepsy has just become a total worry. I must see my Dr every 2 weeks, submit Fit notes every month but the DWP give me a Work Coach.... I receive ESA but I wondered have any Epileptics applied for PIP recently and been awarded it? 
«1

Comments

  • poppy123456
    poppy123456 Member Posts: 28,525 Disability Gamechanger
    Hi,

    PIP isn't awarded based on a diagnosis, it's how those conditions affect your ability to carry out daily activities based on the PIP descriptors. Lots of people claim PIP because of how they're affected by epilepsy but you can't compare 2 people.

    Did you appeal the PIP decision by first asking for the Mandatory Reconsideration? Then Tribunal if that failed? If not then when was the decision made on the PIP?
  • michfinch
    michfinch Member Posts: 173 Pioneering
    Yes, Appeal happening in the New Year. My Dr and Psychologist are very supportive and I understand Epilepsy is being reconsidered. Thank you.
  • michfinch
    michfinch Member Posts: 173 Pioneering
    Tribunal sorry.
  • poppy123456
    poppy123456 Member Posts: 28,525 Disability Gamechanger
    I'm not sure what you mean by epilepsy is being reconsidered. PIP isn't awarded based on a diagnosis, it's how those conditions affect you.
  • wilko
    wilko Member Posts: 2,449 Disability Gamechanger
    Again we have a claimant appealing their PIP award not about their abilities to manage the PIP descriptors but their illnesses and diagnosis, surly claimants have read and understood the questions in the PIP application form.
  • michfinch
    michfinch Member Posts: 173 Pioneering
    Epileptics were being dismissed over and above any other disabled people. Now we are being re-assessed. We may look and generally act non-disabled, however, none of us know when an attack is going to happen and it is the unpredictability of the mental illness. I’ve spoken to many Epileptics and it’s not us who haven’t understood the system, it’s that the system haven’t understood the nature of the mental illness we all suffer with.
  • poppy123456
    poppy123456 Member Posts: 28,525 Disability Gamechanger
    I've not heard of those with epilepsy being re-assessed. Are you confusing this with the following and planning a journey descriptor change? Those that were awarded after a certain date will have their claim looked at again. Once a decision is made DWP will contact the claimant. The new rule changes for this descriptor won't affect everyone and it's only the following and planning a journey part and nothing else.
  • michfinch
    michfinch Member Posts: 173 Pioneering
    I’ve fought along with my MP’s Assistant and The Epilepsy Society to have Epileptics’ cases re-assessed. It’s taken quite a while to get this far and as I say it’s not just my case. Yes, we can walk, stand up, sit down, remember a few objects, look non-disabled etc etc etc however it’s the nature of never knowing when you’re going to have an attack. Stress is my main trigger. The other morning I woke up having bitten my tongue and very confused - which lasts for days and days. Loss of memory is a huge problem, it feels like I have Alzheimer’s.
  • loveXMASday
    loveXMASday Member Posts: 2 Listener
    I got high and hi in my assessment but got lo for both last time but was DLNA 
  • affii1993
    affii1993 Member Posts: 103 Courageous
    @michfinch all thes best and don’t give up, when having and applying for pip they ask both about diagnosis and how does it affect you, so it’s both, I find some answers here so not said nicely!
  • michfinch
    michfinch Member Posts: 173 Pioneering
    Oh thank you for all the advice. I won’t give up!! 
  • poppy123456
    poppy123456 Member Posts: 28,525 Disability Gamechanger
    PIP isn't about a diagnosis, it's how those conditions affect your ability to carry out daily activities based on the PIP descriptors.
  • michfinch
    michfinch Member Posts: 173 Pioneering
    I could be carrying out a daily activity and be interrupted by an Aura or an Epileptic Attack, that’s where the Assessors have been unable to categorise is. Anyway, PIP shouldn’t discriminate against the mentally disabled so I hope in the future common sense will prevail. Our brains are muscles and if they don’t work properly then this has to be recognised. 
  • affii1993
    affii1993 Member Posts: 103 Courageous
    @michfinch I agree with you!! 
  • cristobal
    cristobal Member Posts: 987 Disability Gamechanger
    I don't think it's a case of answers "not being put nicely"...people are trying to help!
    You really do need to concentrate on how your epilepsy affects you carrying out daily tasks as per the descriptors. I have relatives with epilepsy - one is barely affected and I wouldn't qualify for PIP. Another is more severely affected.

    If I were you, as is often advised on here, I'd read the descriptors carefully and come up with a couple of examples of how your condition prevents/limits you carrying out those that apply.
  • michfinch
    michfinch Member Posts: 173 Pioneering
    Hi thanks for this, I am aware.... I’ve spoken with many Epileptics and we all feel the same. I’m not going to feign a limp etc, not able to lift up my arm etc etc the current Assessment process does not take into account the problems Epileptics face. I know people who use a stick... who don’t need to. I’m not lying about my condition however the Assessment process is physical-orientated. Yes I can remember a couple of words etc but I live with my diary to advise me what I did this morning, yesterday etc etc. I have short-mid-term memory problems. Don’t want to moan :-) but my family and friends, ex work colleagues know I’m stressed to heck by everything and stress itself is a killer.
    Good luck to everyone x
  • affii1993
    affii1993 Member Posts: 103 Courageous
    @cristobal when I said nicely I meant it, I understand everyone is trying to help but the input could have been nicer
  • telscope
    telscope Member Posts: 37 Connected
    Hello Michfinch,
    I also have epilepsy & I am on ESA.
    When I being considered for PIP I was getting turn down at the initial interview & the Mandatory Reconsideration, getting all zero's.
    I took it onto a Tribunal & won my case. I also got informed from my advice assistant about Severe Disability Allowance (SDA), which got added onto my ESA after my PIP was successful.
    I had someone with me at the initial interview & the tribunal, who were able to mention about the difficulties that can occur when I have a seizure.
    By being turned down, it was putting me under so much pressure/stress, especially on the financial side, I was surprised it didn't bring on a seizure. If I had one they would have seen it for themselves. 
       
  • poppy123456
    poppy123456 Member Posts: 28,525 Disability Gamechanger
    Just so that others aren't confused here. It's not SDA that's added to ESA with a daily living award of PIP it's Severe disability premium (SDP). Not everyone will qualify for this because it has very specific criteria. One of them is you need to live alone or be classed as living alone to qualify, there's also other criteria too.
  • justg72
    justg72 Member Posts: 173 Pioneering
    Hi michfich
    I am in the same boat scored 0 points for both even though I have daily seizures grand mals which is treatment resistant. I struggle everyday as when I have dropped to the floor, been unconscious, then I do not know where I am, talk no sense, can't walk and then sleep for hours to recover. It can take till the next day to feel normal. Like you have said in the other posts epilepsy is invisible and we look ok until we have a seizure. I think its so misunderstood and some people think after a seizure we can just get up and carry on with the day which doesn't happen. I also have the depression and severe short term memory problems, there's post it notes all over my home with reminders. I am now currently waiting for a tribunal date like yourself and I will fight all the way.
    Good luck with your tribunal 

Brightness

Complete our feedback form and tell us how we can make the community better.

Do you need advice on your energy costs?


Scope’s Disability Energy Support service is open to any disabled household in England or Wales in which one or more disabled people live. You can get free advice from an expert adviser on managing energy debt, switching tariffs, contacting your supplier and more. Find out more information by visiting our
Disability Energy Support webpage.