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Epilepsy and appealing PIP

Kimbo_88 Member Posts: 3 Listener
edited November 2018 in PIP, DLA, and AA
Hi I've just received my PIP claim and I've only been awarded the enhanced Mobility element and no daily living element, the assessor has missed out so much that I should have got points for and I'm wondering where do I go from here my claim was done as the MR as it was handed in late so I understand it needs to go to Tribunal but I struggle with these things and I'm wondering if anyone has any information or recommendations on who can help me 


  • Pippa_Alumni
    Pippa_Alumni Scope alumni Posts: 5,798 Disability Gamechanger
    Hi @Kimbo_88, and a warm welcome to the community!

    Sorry to hear about your PIP experiences and that you're going through the appeals process. Have you seen Scope's guidance on appealing DWP decisions? There's some information and videos on there about going from an MR to an appeal.

    Have a read, and do come back to us with any further questions- we'll advise where we can!

  • justg72
    justg72 Member Posts: 173 Pioneering
    Hi Kimbo88
    I have temporal lobe treatment resistant epilepsy and I have been awarded the mobility after my MR appeal and nothing for daily care. I am now taking it to a tribunal because of this. I do understand how stressful this is and the impact it can have on your seizures and health. I went to see a benefit advisor with my tribunal papers and he stated that looking at my seizure diaries and my medical evidence from my Epileptic Specialists I have a really strong case. However I kept thinking it may not go in my favour. I am now trying to think positive about it and I am trying not to get so stressed out, I understand its easier said than done. 
    I have daily seizures and its totally life changing I was only diagnosed a few years back so I understand how hard it is. Is your epilepsy like mine treatment resistant? Many of the daily care descriptors I can not do or I need supervision at all times. I scored nothing for cooking even though I do not carry out because of safety. Also bathing scored nothing, my epileptic nurse stated in a letter that I nearly drowned in the bath as I went under and had a seizure. Toileting nothing even though I have many accidents because of my seizures and I have a camode. The list goes on. I would fight the DWP Kimbo and take it to a tribunal if you think the decision is wrong. Over 70% are winning their tribunals so its worth fighting. Keep your chin up and try to stay positive and I wish you all the luck in the world. Let us know how you get on.  
  • Kimbo_88
    Kimbo_88 Member Posts: 3 Listener
    edited November 2018
    Hi I am on 4 different types of anti convulsants all at high dosages and still suffer seizures daily I managed to get 2 points for not being able to use a cooker but then apparently I'm somehow meant to get all my necessary nutrition from microwave meals for the rest of my life. My medication is set up in a dosset box and my partner deals with topping them up as I get muddled up I scored no points here, he supervises me in the bath and I got 2 points for that, when I have a Seizure i have no control of my bladder but got nothing for that and I also have memory problems and I'm having a Psychological Assessment in December to have a look at this, the assessor just looked at my appointment letter and didn't look at the whole thing and so makes it out that I'm a complete liar ? Don't worry I will appealing against this I just wanted to find out help, information and advice about what is the best way to do this 
  • justg72
    justg72 Member Posts: 173 Pioneering
    Hi Kimbo 88
    Sounds similar to my assessment, can I ask where in England do you come from?
    Do you have regular support from the epileptic services as I do in West Yorkshire and they are really good.
    I suffer like you with memory and bladder issues and no points awarded. I had the similar issues in my assessment inconsistencies and inaccuracies. I am really glad that you are taking it further and are fighting for what you should be entitled to. My epileptic specialist nurse told me that all her patients had been refused the daily care for PIP. Did you know that 3 in 5 are turned down for PIP for both daily tasks and mobility its a disgrace and I say that DWP are discriminating against epilepsy its just not right! I know that epilepsy is really misunderstood and it can be invisible condition until you witness someone have one and then its a totally different. Its like if you had a seizure eg tonic clonic in a F2F assessment, the HCP's report would probably award you the daily care when they witness, falling to the ground no prior warning, been unconscious, then waking up and you dont know where you are, not talking any sense even though you think you are, cant walk because your legs will not let you, confused and upset, wet yourself because of the seizure and then sleep for hours! 
    Thats epilepsy for you.

    Good luck and let me know how you get on.
  • Kimbo_88
    Kimbo_88 Member Posts: 3 Listener
    Hiya I'm from Cambridgeshire, I remember for my assessment for DLA years ago I walked in bold as brass introduced myself and said my limbs are attached, my back is fine only thing I can't guarantee is that I won't collapse on the floor and start break dancing and the woman who done my assessment laughed and said I'd made her day the way I had just come in and put it how it was, this time I had a home visit as my seizures have got worse but I know where you're coming from literally unless you have a Seizure in front of them invisible disabilities are so discriminated it's actually sickening in itself 
  • Yadnad
    Yadnad Posts: 2,856 Connected
    edited November 2018
    Invisible disabilities are just that - invisible.

    You have probably 40 minutes or so with an assessor who has to decide based on what they see and hear.

    If I went in to an assessment and appeared absolutely normal would you expect the assessor to agree with what I have written when what they see doesn't exist at that time. You have to produce good evidence that the condition exists, that it is variable, that it causes the impact for more than 50% of the time and then show that what has been written on the claim form actually does happen.
    They work on the basis that not every claimant is entirely truthful in what they claim.
  • Topkitten
    Topkitten Member Posts: 1,285 Pioneering
    One problem with epilepsy is the perception of those that do not suffer it. By far the majority of sufferers can keep it under complete control enough to have an almost normal life and so this is the initial view that needs to be overcome. Admittedly your situation sounds bad but many people may consider a lot of it as just excuses not to bother yourself and think of it as laziness when it can be completely controlled. It is only those that suffer that really understand just how difficult it can be to control.

    I would recommend researching the medication you are on via the internet as a sufferer I knew had a horrendous number of problems after being put on a newer medication when it had been controlled before. She later discovered that as much as 50% on the people taking the new one suffered badly even on large doses but it took 2 years for the GP to acknowledge what I knew immediately, that the medication did not agree with her. Doctors follow tried and trusted scripts which can take a long time before they will admit a problem if you are one of those it doesn't agree with.

    "I'm on the wrong side of heaven and the righteous side of hell" - from Wrong side of heaven by Five Finger Death Punch.
  • Paul7210
    Paul7210 Member Posts: 40 Courageous
    I wish those of you appealing pip the best of luck, I understand how difficult uncontrolled epilepsy can be, my wife has seizures most days and like you Justg72 it is refractory, so as you know it's more than just a seizure now and again as mood and memory along with side-effects can be as bad. We're in Derby, stay positive everyone and keep fighting.


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