PIP, DLA and AA
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Epilepsy and PIP

michfinchmichfinch 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? 

Replies

  • poppy123456poppy123456 Member Posts: 22,218 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?
    Proud winner of the 2019 empowering others award. This award was given for supporting disabled people and their families for the benefit advice I have given to members here on the community.
  • michfinchmichfinch 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.
  • michfinchmichfinch Member Posts: 173 Pioneering
    Tribunal sorry.
  • poppy123456poppy123456 Member Posts: 22,218 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.
    Proud winner of the 2019 empowering others award. This award was given for supporting disabled people and their families for the benefit advice I have given to members here on the community.
  • wilkowilko Member Posts: 2,289 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.
  • michfinchmichfinch 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.
  • poppy123456poppy123456 Member Posts: 22,218 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.
    Proud winner of the 2019 empowering others award. This award was given for supporting disabled people and their families for the benefit advice I have given to members here on the community.
  • michfinchmichfinch 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.
  • loveXMASdayloveXMASday Member Posts: 2 Listener
    I got high and hi in my assessment but got lo for both last time but was DLNA 
  • affii1993affii1993 Member Posts: 97 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!
  • michfinchmichfinch Member Posts: 173 Pioneering
    Oh thank you for all the advice. I won’t give up!! 
  • poppy123456poppy123456 Member Posts: 22,218 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.
    Proud winner of the 2019 empowering others award. This award was given for supporting disabled people and their families for the benefit advice I have given to members here on the community.
  • michfinchmichfinch 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. 
  • affii1993affii1993 Member Posts: 97 Courageous
    @michfinch I agree with you!! 
  • cristobalcristobal Member Posts: 966 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.
  • michfinchmichfinch 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
  • affii1993affii1993 Member Posts: 97 Courageous
    @cristobal when I said nicely I meant it, I understand everyone is trying to help but the input could have been nicer
  • telscopetelscope 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. 
       
  • poppy123456poppy123456 Member Posts: 22,218 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.
    Proud winner of the 2019 empowering others award. This award was given for supporting disabled people and their families for the benefit advice I have given to members here on the community.
  • justg72justg72 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 
  • michfinchmichfinch Member Posts: 173 Pioneering
    Let’s keep in touch :-) Let’s fight! 

  • justg72justg72 Member Posts: 173 Pioneering
    Hi michfinch
    Yes I will let you know how I get on, however mine isn't clear cut. Errors from start to finish and I have put a complaint in to the Independent, Case, Examiner (I.C.E.) so lets see what happens with this. Epileptic people are the ones out of every other disabilities which in my opinion are been discriminated against, even the epileptic specialists and charities are in agreement with this. I am currently waiting for an adviser to look over my tribunal bundle because if he thinks there's a strong case of winning he is contacting the DWP to ask them to re-look at their decision again. I am fighting all the way.
    I will let you know if I have any news.
  • woodbinewoodbine Community Co-Production Group Posts: 3,775 Disability Gamechanger
    I have had epilepsy now for 21 years I'm 60 next month but what I want to say is that I am NOT an elipeltic I am a person with epilepsy, the condition does not define me. I think when applying for PIP what you have to get across is how the epilepsy affects your life, how you need to be supervised in the home and when you go out, what the side effects of the medications are, and the effects of the epilepsy e.g not just the seizures but the incontinence, the migraines, the depression it also is a good idea to send a 2 week diary with the application outlying when you have seizures and if you do absences.
    my advice is given freely and is correct to the best of my knowledge.
  • affii1993affii1993 Member Posts: 97 Courageous
    @justg72 hello how did you complain via phone or email
  • michfinchmichfinch Member Posts: 173 Pioneering
    Yes, I’ve had my MP involved about the fact that Epiletics are being discriminated against. When I wasn’t having so many auras and seizures as I do now, I was running a successful company employing 20 people. I had to leave that to my family to run since 2014 when I had a huge Epileptic fit and a neat Nervous Breakdown, so all mental, not physical disabilities, but my brain doesn’t work properly now.
  • mikehughescqmikehughescq Member Posts: 5,987 Disability Gamechanger
    michfinch said:
    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
    michfinch said:
    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.
    I’m afraid I switch off when a claimant decides that one of the ways to add credibility to their case is to suggest others are fraudsters. Most impairments are invisible and commenting on what others do and don’t “need” is a mugs game. We’re all keen to see people walk a mile in our shoes but slightly less keen to extend the courtesy for others. Let’s keep prejudice and ill-informed assertions against fellow disabled claimants out of discussions please. Disability benefit fraud is negligible; over-reported by the media and largely done by criminal gangs. It should not enter this discussion. 

    The assertion re: epilepsy and dismissal is almost right but not really. The guidance was amended in November 2017 as per https://www.epilepsy.org.uk/news/news/new-government-changes-pip-assessor-guidelines-may-improve-claims-process-people-epilepsy

    The outcome of this has largely been... well pretty much nothing really. It’s guidance. It’s not a central part of HCP training and nothing has changed. 

    The more key change is re: the interpretation of safety. Nicely summarised at https://pipinfo.net/conditions/epilepsy.

    The PIP process itself no more discriminates against epileptics than it does any other condition. The issue is understanding the consequences of the consortium and that’s an issue across disabilities and impairments and not exclusive to any one condition. 

    A successful claim to PIP for an epileptic looks no different to a successful claim for any other condition. Focus on those activities where you feel points should be scored and evidence it with a couple of examples of actual events per activity. Doesn’t require wedges of medical evidence. Just a focus on the functional consequences. A competently completed claim pack completed along these lines will win out in the end. Representation and face to face advice will also help.


  • lindaloo1964lindaloo1964 Member Posts: 3 Listener
    Hi a young man who lodged at our house and was a family friend developed tonic clonic epilepsy and I filled his forms in and because we saw how his illness severely affected him I wrote all that down and he got lower rate on one component and higher rate on another. Actually with other severe illnesses we could have fought for high rate on both mobility and daily living but he was happy he got what he did, that really 
    helps him so we just left it that way plus he in esa support group. He didn't have to go to tribunal. Hope this helps. Regards L
  • michfinchmichfinch Member Posts: 173 Pioneering
    Unfortunately, there are fraudsters who appear to know how to work their way through the system. Switch off if you like... 
    I’ve had help filling in forms, reports attached from my Specialist, my Dr and the Psycologist (appointed by the DWP). 
    I shall look at the links sent, take all advice on board. 
    Believe you me I don’t want to be going through this process, however, I’ve worked and paid my National Insurance, Tax etc non-stop for 45 years, and, when I genuinely do need help and assistance from a System I have contributed to for 45 years, I really had expectations, now my Epilepsy, Memory Loss and Depression have worsened, that at this juncture I would not have to be asking for handouts from my family because my form-filling skills aren’t adequate enough to describe my Disability to claim PIP.
  • poppy123456poppy123456 Member Posts: 22,218 Disability Gamechanger
    I'm sorry but there's very few people that claim PIP fraudulently. Invisible conditions do exist for many people and you can't judge a book by it's cover.

    Paying your NI contributions doesn't mean you're automatically entitled to PIP.
    Proud winner of the 2019 empowering others award. This award was given for supporting disabled people and their families for the benefit advice I have given to members here on the community.
  • mikehughescqmikehughescq Member Posts: 5,987 Disability Gamechanger
    michfinch said:
    Unfortunately, there are fraudsters who appear to know how to work their way through the system. Switch off if you like... 
    I’ve had help filling in forms, reports attached from my Specialist, my Dr and the Psycologist (appointed by the DWP). 
    I shall look at the links sent, take all advice on board. 
    Believe you me I don’t want to be going through this process, however, I’ve worked and paid my National Insurance, Tax etc non-stop for 45 years, and, when I genuinely do need help and assistance from a System I have contributed to for 45 years, I really had expectations, now my Epilepsy, Memory Loss and Depression have worsened, that at this juncture I would not have to be asking for handouts from my family because my form-filling skills aren’t adequate enough to describe my Disability to claim PIP.
    It’s not a matter if switching it off. Fraud on disability benefits is negligible and over-stated. DWP accounts have been qualified as non-reliable for 2 decades now. As a business person you will understand the significance of qualified accounts. People who work their way through the system are not fraudsters. They are claimants.

    Your claim has a limited chance of success whilst you persist with such beliefs. Your focus needs to be elsewhere and it’s simply not true to say you couldn’t do the form. The stuff you’ve described here is more than adequate. Your medical evidence will largely focus on diagnosis, treatment and prognosis. Those are likely not at issue. The functional consequences of your epilepsy for you are what’s at issue and you’re halfway there with what you’ve written on this forum. 
  • michfinchmichfinch Member Posts: 173 Pioneering
    So, as a previous Businesswoman who “left” because my brain couldn’t function to it’s normal 125 mph pace, instead it became muddled and fuddled and I became a bit of an embarrassment.  I’ve had reports from Professional people attached to my PIP claim, but I sailed through the stand up, sit down, remember this and that routine - what more can be done? My hips are now hurting through all the walking I now do through not driving. Maybe I need a walking aid?
    The whole process winds me up so much I end up having auras. So I’ll leave it there and take my medication (which has been doubled). Thank you for all advice offered. I shall read and absorb and I’ll keep you posted. 
  • YadnadYadnad Posts: 2,856 Member
    I wonder where in all of this fits the claimant that regular as clockwork asks for their monthly supply of drugs from the GP and who then puts the whole lot in the rubbish bin. For them the drugs aren't important in themselves, it's the 5 pages of the monthly repeat prescription list that gets sent to the DWP.
    The GP genuinely believes that the patient is really in a bad way and obviously that would be recorded on his medical records.

    Don't say that this never happens - it does on a regular basis - I have factual evidence. It's simply that what you see may not be actually the case.

    As with DLA claimants who fought for their assertation that they could not walk more than 50 metres and now maybe only months later they argue that they can't walk 20 metres if they want to retain the highest mobility award. 

    Of course there is and always will be the 'hidden' applicant that will 'try it on' - it's human nature. However for the majority of claimants they should forget what others do or might do and concentrate on their own claim keeping it totally honest.
  • justg72justg72 Member Posts: 173 Pioneering
    Hiaffii1993 said:
    @justg72 hello how did you complain via phone or email
    When you have a complaint the first step is to phone DWP they then will log the complaint and they then send a complaint leaflet to you through the post.
    The leaflet itself may not be big enough because it is really small, so I had to use more paper.

     You then wait for a response from DWP. If you are still unhappy with the outcome you then can write again stating why you are not happy with the decision.
     Once again you have to wait for a response from DWP which will be in writing.

     Then if you are still unhappy about the outcome, you can then take your complaint to the Independent, Case, Examiner (I.C.E.). You can only take your complaint to (I.C.E.) if you have followed the complaints procedure by how I have explained above.

    I then wrote to I.C.E. and explained my complaint and provided evidence of all the errors which were made.

    I.C.E. will then look at your complaint and see if you have a case for them to deal with.

    The contact details if you need them are:
    The Independent Case Examiner,
    P.O. Box 209
    Bootle
    L20 7WA
    Phone number:0345 6060777
    Email address: [email protected]

    Just to let you know that there is a backlog of complaints and I was informed in summer they were dealing with cases from 2017.
    Take care  
     
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