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Uncontrolled epilepsy and PIP claim

jdouglas088jdouglas088 Member Posts: 4 Listener
Hi,

I would greatly appreciate any advice or help anyone could give me on my PIP application.  I was on DLA for some years and it was lifelong guaranteed, because I have uncontrolled Epilepsy.  I am on the highest amounts of drugs (2 types) which my body can take, have one drug which is taken when I know my seizures could occur and have a different drug form in injection so my fiance can use it should I go into status epilepticus (at least 2 or 3 fits in one go), so I don't have to go to A&E all the time when I don't gain a lot apart from blood tests and waiting around.

I still have seizures on a weekly basis at least and their impact after is powerful.  It is tiredness or stress which cause them, but my drugs make me more tired and working full-time is not practical.... but we are really suffering financially for my loss of benefits.

I know most of the epileptic patients seen by my specialist nurse have kept some of the benefit, but I applied to PIP and lost it.  I then went to appeal and lost that, then there was the judgement which came through the courts affecting people with my condition, which should mean I could more plausibly receive it now.

I did go through the whole process without any external support, so maybe that is something which I should have taken... but I am a bit at a loss at what to do now or how would be the best approach to ensure I do get somewhere.  Anything anyone could tell me would be appreciated.

Thanks!

Replies

  • Pippa_AlumniPippa_Alumni Scope alumni Posts: 5,851 Disability Gamechanger
    Hi @jdouglas088, welcome to the community! 

    Just to clarify, are you now beginning a separate PIP application? If so, I'm sure our members will be able to advise, and I'd also highly recommend checking out CAB's guidance on filling in the PIP form- it breaks down each of the questions and gives insight into how best to answer them!
  • jdouglas088jdouglas088 Member Posts: 4 Listener
    I didn't know whether it was best to try to pick up from the claim which was dismissed or start again.  It is all very confusing
  • mikehughescqmikehughescq Member Posts: 6,001 Disability Gamechanger
    Almost always better to challenge the original claim. Multiple claims never go down well and you won't meet anyone on here who posts "Well I finally succeeded at the 6th attempt!"

    How long ago was your tribunal decision? You have one month to ask for a statement of reasons and record of proceedings. You can ask outside of that time but it's lap of the gods stuff. You will also then need face to face advice to assess for errors of law. There are almost always errors of law but the issue boils down whether you have PIP entitlement. 

    In terms of PIP and safety your original post focuses on the impact of a seizure post seizure and that, to me, would clearly impact on your ability to perform points scoring activities reliably. However, the key thing about epilepsy and safety is around whether pre-seizure you get a warning which enables you to make yourself safe. Knowing that would help us advise you much more accurately. 
  • jdouglas088jdouglas088 Member Posts: 4 Listener
    My tribunal and appeal was sometime before the decision made in the courts that has helped people with epilepsy to get PIP, so that much cannot be changed and from what you have written means my chances are considerably reduced?  In terms of warnings sometimes I have an idea and other times no, and the next time I wake up I am in hospital.  My form of epilepsy has just become more severe the older I have become, to the point where now my body and mind cannot cope with full-time (irrelevant of how much the finance is needed by us)...  which is why the money made such a difference.
  • lillybellelillybelle Member Posts: 458 Pioneering
    Hi,
    i have had uncontrolled epilepsy since I was 12yrs old. I am now 52,
    was on indefinite DLA middle rate care. Low mobility.
    a disability solutions charity helped fill my form in. Safety is the most important aspect of somebody with epilepsy and this was stressed at every question,
    had a lovely assessor. She had wrote everything that I had said in her report then in her own 60mins assessment of my needs dismissed the whole lot 
    however I was awarded enhanced mobility because I could not make a journey alone ( something that must affect you) and 6 for daily living. 4points for help cooking which I can’t do. Due to many major accidents Plus 2points for help bathing.
    i decided an MR was needed. This I did myself going through every aspect. Each task I said why I was unable to do it and what had happened previously.
    please go into detail and mention all injuries including hospital treatment .
    I was lucky and was awarded another 2 points for stanard care. This was because I mentioned that I never eat alone after nearly choking on food during a seizure.
    allways mention the 50/50 ruling as yes this may now help with your claim.
    good luck and don’t give up
  • mikehughescqmikehughescq Member Posts: 6,001 Disability Gamechanger
    My tribunal and appeal was sometime before the decision made in the courts that has helped people with epilepsy to get PIP, so that much cannot be changed and from what you have written means my chances are considerably reduced?  In terms of warnings sometimes I have an idea and other times no, and the next time I wake up I am in hospital.  My form of epilepsy has just become more severe the older I have become, to the point where now my body and mind cannot cope with full-time (irrelevant of how much the finance is needed by us)...  which is why the money made such a difference.
    You can lodge a late appeal to Upper Trubunal and it’s not impossible without a statement of reasons and record of proceedings but it is very difficult. Fave to face advice would be essential. The inconsistency of your warnings makes a strong case for both components of PIP. Add in the impact of subsequent tiredness and you have a very strong case if well presented. 

    It would be helpful to know exact dates in terms of when your appeal was heard etc. so any pointers could be more specific. 
  • Paul7210Paul7210 Member Posts: 40 Courageous
    How's the PIP claim going? I was sorry to hear of your epilepsy, my wife has severe epilepsy too and as you it has tended to get worse as she's got older. Lisa has regular seizures and I have to administer rescue medication at times. Fighting with DWP can be a nightmare , my Lisa has support from Adult Social Care so I was lucky to be able to get evidence to help our case. I hope you get things sorted soon.
    Paul
  • justg72justg72 Member Posts: 173 Pioneering
    Hi jdouglous88
    So sorry to hear about you losing your PIP, I think its disgusting how all of us with epilepsy are getting unfairly treat by DWP. I have uncontrolled epilepsy like you and have seizures daily. I went for my F2F and went from enhanced for both to scoring 0 for both. I appealed with an MR and sent more evidence because of this they have now decided to award me 2 points for cooking and 2 points for bathing on the daily care components only. I then was awarded 12 points for mobility for not been able to plan or follow a journey. I rang PIP about this and the lady on the phone said looking at your evidence you should have been awarded at least standard care, she then went on to say that I should now take it to a tribunal. That is now what I am now going to do. When I went for my assessment I had not had a seizure so to the assessor I looked okay, however if she had seen me before, during and after a seizure I know the scores would have been entirely different. Epilepsy is so misunderstood and some people think that when we have a seizure we can just get back up and carry on regardless, this is so untrue the impact after a seizure can last for hours and can last up to a full day, the aftermath is awful, it makes me really ill. Good luck I hope you get what is rightly yours. ..
  • rankin1strankin1st Member Posts: 3 Listener
    if you have uncontrolled seizures then you must suffer terribly with tiredness post seizure, you should be getting mobility and daily assistance answer the questions as if on a bad day.
    You should contact social services and ask for a carers assessment for your partner and ask for direct payments you can then get help with whatever your carer needs cleaner, help with gardening etc, especially if they have to drive you around.

    please please please get help from Citizens advice or from brain injury charity so they can help fill in the forms for you.
    all the best

    You can also get a free bus pass which should help financially.

    All the best

  • mikehughescqmikehughescq Member Posts: 6,001 Disability Gamechanger
    Pardon me for publicly sighing but the advice to “answer the questions as if on a bad day” is very poor advice and should be ignored. Pretending you are how you are in a bad day is called fraud. There have been, and I’ve posted this many times on here, two prosecutions of claimants that I’m aware of for doing exactly this and one of them was definitely successful. DWP are not stupid and nor are their medical advisers and HCPs. 

    If you have variations, and almost all impairments and illnesses do, it is this which make the case for needing assistance from another person not trying to pretend you’re like that all the time. 
  • YadnadYadnad Posts: 2,856 Member
    edited August 2018
    rankin1st said:
    if you have uncontrolled seizures then you must suffer terribly with tiredness post seizure, you should be getting mobility and daily assistance answer the questions as if on a bad day.
    You should contact social services and ask for a carers assessment for your partner and ask for direct payments you can then get help with whatever your carer needs cleaner, help with gardening etc, especially if they have to drive you around.

    please please please get help from Citizens advice or from brain injury charity so they can help fill in the forms for you.
    all the best

    You can also get a free bus pass which should help financially.

    All the best

    Uncontrolled seizures are about as misunderstood as is uncontrolled Diabetes Type 1. The end result is the same in that after an episode it can leave you drained for hours.Go into a coma and if help doesn't come fast you can die. Hence why wherever I go I have to take a little red box containing an injection kit made up of glucagon.with me so that the person with me knows what to do to bring me round
    When I put this forward in my PIP claims the whole thing was dismissed as immaterial where the assessor said that all type 1 diabetes patients don't just go into a coma and die.
    Rubbish I told her she ought to tell that to my consultant. There is a lot of difference between controlled and an uncontrolled diabetes.

    I looked for five years and three claims for help but there was nothing in or around my area.
    Now I get no PIP and too old to start a new claim (70).

    Previously had DLA High Care & High Mobility indefinitely, but yes PIP is a totally different benefit and you cannot compare the two.

  • rankin1strankin1st Member Posts: 3 Listener
    Actually what i was trying to emphasise is that this person clearly has a can do attitude and unfortunately means you will be disqualified. I am definitely not advocating fraud! merely for the person to write on the form on a bad day ..... and on a good day.... and give explanations of both. Epilepsy is a highly variable condition and as such it needs to be clearly explained on the forms in that way, and stress the unpredictability of the condition and the anxiety that causes, didnt really appreciate your implication by the way quite rude
  • mikehughescqmikehughescq Member Posts: 6,001 Disability Gamechanger
    I appreciate the clarification, which is spot on. However, it was needed as the previous expression of what you were trying to say said about 50% of what you just said and, if taken as written, was advocating fraud. As we’re now clear on what was meant let’s leave it there and move on.
  • YadnadYadnad Posts: 2,856 Member
    rankin1st said:
    Actually what i was trying to emphasise is that this person clearly has a can do attitude and unfortunately means you will be disqualified. I am definitely not advocating fraud! merely for the person to write on the form on a bad day ..... and on a good day.... and give explanations of both. Epilepsy is a highly variable condition and as such it needs to be clearly explained on the forms in that way, and stress the unpredictability of the condition and the anxiety that causes, didnt really appreciate your implication by the way quite rude
    Sorry I may have misunderstood your post - not difficult today - can't seem to keep awake.
    I think that we all try to put a brave face on everything - I certainly do - I don't quit until I collapse.
    We should not be penalised for trying to be positive in our outlook and thinking.
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