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PIP and Epilepsy

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  • mac1976
    mac1976 Community member Posts: 63 Listener
    I’m losing sleep over it. As you will know we need our sleep so probably not doing myself any favours. I’m starting to think do I go ahead it or just leave it. I’ve been looking at the safety aspect of it all. Would that apply to me. Could even mention the crippling head aches. 
  • saz11
    saz11 Community member Posts: 121 Pioneering
    @mac1976

    Good advice from @woodbine not much more i could add. 
    We do understand having been through it....just be open and honest and explain how your disability affects you. 
    I know its a very stressful process and i hope you have got lots of support and remember you having nothing to lose by applying.

  • mac1976
    mac1976 Community member Posts: 63 Listener
    It just knocks you when you ask for advice to be told the government have changed DLA to save money so the criteria is much more harder. I don’t use that money to buy myself nice things. It’s used for taxis and things like that. I have to keep myself safe as much as possible. The has been times when I’ve not gone home but to A&E. My sons always ringing me when I’m out. He’s grown up with me returning home with black eyes and my forehead being the size of a ballon. The last bad time I came round in a shop with paramedics cutting my coat off. It was my local shop the next time I went in they said they had to run a disc off the camera to cover them selfs in case I sued them. The lady who was in the shop said she Heard the bang of me hitting the floor from the other side of the shop. I was in hospital for a week after that. It’s always on your mind if get home. Sorry to go on. Suppose this is what I should be saying to them. 
  • Chloe_Scope
    Chloe_Scope Posts: 10,586 Disability Gamechanger
    Hi @mac1976, I can see how stressful you are finding this and I'm sorry for that. I definitely would mention the headaches if they link to you being unable to complete one of the descriptors. Did you have a chance to look through this article that helps to break down what the descriptors mean?

    You also might find it helpful to seek local face to face advice.

    I know it's difficult, but we are all here to offer support and guidance.
    Scope

  • woodbine
    woodbine Community member Posts: 11,521 Disability Gamechanger
    mac1976 said:
    It just knocks you when you ask for advice to be told the government have changed DLA to save money so the criteria is much more harder. I don’t use that money to buy myself nice things. It’s used for taxis and things like that. I have to keep myself safe as much as possible. The has been times when I’ve not gone home but to A&E. My sons always ringing me when I’m out. He’s grown up with me returning home with black eyes and my forehead being the size of a ballon. The last bad time I came round in a shop with paramedics cutting my coat off. It was my local shop the next time I went in they said they had to run a disc off the camera to cover them selfs in case I sued them. The lady who was in the shop said she Heard the bang of me hitting the floor from the other side of the shop. I was in hospital for a week after that. It’s always on your mind if get home. Sorry to go on. Suppose this is what I should be saying to them. 
    Thats exactly what you should be telling them try and keep a diary for the next 2 or 3 weeks record what happens and send it with the forms, if you need more help we are always here for you.
    2024 The year of the general election...the time for change is coming 💡

  • ozzy19721968
    ozzy19721968 Community member Posts: 29 Connected
    Stress over I have been awarded enhanced rate for mobility and daily living and got a review in two years was so worried but all over for now 
  • mac1976
    mac1976 Community member Posts: 63 Listener
    I’m really worried it’s the assessment that’s doing me. What if I get muddled up and done explain it properly. The test says I will only get 4 points for living. 
  • ozzy19721968
    ozzy19721968 Community member Posts: 29 Connected
    I was worried about the assessment and didnt think I would get awarded anything reading some of the stories about the two companies that do the assessment. But just stay calm and have some one with you that knows how you are affected with your illness and dont answer the question straight away think about what they ask you and explaine as much as you can after all they are just a person like you I had my wife with me and was a great help she helped with questions and said things that I didnt think of and I just been told I am to get both enhanced rates so it's not as bad as you think yes they do observe you from the minute they walk in but keep telling them how your illness affects you I have trouble with my neck back and knees I said I have days where I cant move and the odd days where I am still in pain but can move about slowly .just stay calm and think about the question before you answer. Let us know how you get on 
  • mac1976
    mac1976 Community member Posts: 63 Listener
    This is going to sound bad. I know people get that benefit cos they can’t work. I have a job that I do 2 days. It’s a zero hour contract for the purpose of my epilepsy. If I can’t go in I don’t. So don’t alway have a wage. Sometimes I swap my days to how I feel. I sit at a desk and take phone calls to pass messages on. I’m just worried that will go against me even though the job centre encouraged me to do that. I just don’t want to feel like I’m scrounging. I’ve not been in this week with not feeling to good. I just think the assessor will think well if she has a job the is nothing wrong with her. 
  • mac1976
    mac1976 Community member Posts: 63 Listener
    I have been on DLA for 16 years. I was sent for a interview at the job centre due to my husband being made redundant when he claimed job seekers. They told me I could work while claiming DLA. I just think that’s it now it’s gone. We felt like we was scrounging then. My husband had never been out of a job since leaving school. My job now is flexible they are very understanding 
  • mac1976
    mac1976 Community member Posts: 63 Listener
    After a long hard think and a chat with my husband. I’ve decided not to go ahead with the pip claim I know I will only get 4 points for daily living. The job I have will go against me. I will ring in Monday to say I want to cancel the claim as the form hadn’t arrived yet. Just can’t be dealing with trying to jump through hoops. Suppose they will then tell me that my DLA has ended. At least I will still get my medication free as epileptics are exempt from percription charges. Thanks everyone for your advice. Much appreciated. 
  • saz11
    saz11 Community member Posts: 121 Pioneering
    @mac1976

    I am sorry to hear you are still feeling under stress regarding pip. I can honestly say my assessment wasn't bad. They basically ask you the same questions you have already answered on the application form.

    You seem to be convinced because you have the courage and strength to work this will go against you. Pip isnt about your ability to maintain a job its how you disability affects you.
    Like many of us you seem to have daily stuggles because of your epilepsy and that's not something that you are in control of.
    You say you feel like a scrouger why ? .....you are entitled to pip if you qualify like rest of us. You are entitled to a good quality of life and if because of your condition you require help to achieve that then you go get that help. 
     I was like you very stressed , worried , upset prior to the assessment and nearly gave up as its all so overwhelming and can take over your life. But here i am i survived it and got the award i believe was correct.
    I am not saying all are happy endings but as my beautiful mum used to say to me..... if you dont go and get off your a..e lady and fight for something you believe in then you will never know what may have been...and she was right but then again she always was right.
  • chiarieds
    chiarieds Community member Posts: 16,007 Disability Gamechanger
    Hi @mac1976 I'm writing as I remembered reading about epilepsy in the Benefits & Work 's Guide to PIP, which I've pasted below:

    Safety and supervision
    Until now, the DWP have argued that a claimant can only score points for being unsafe if harm is
    likely to occur on more than 50% of the occasions on which they attempt an activity.

    So a claimant with epilepsy who has seizures twice a week would not get points for needing
    supervision when cooking. This is because they could not show that it is ‘more likely than not’ that
    they will have a seizure on any given occasion when they prepare food

    However, on 9th March 2017, in CPIP/1599/2016 a panel of Upper Tribunal judges held that the
    DWP were wrong.

    Instead, they said, the decision maker should look at whether there is a real possibility that harm
    might occur and also at how great the harm might be. The greater the potential harm, the less likely
    it needs to be that it would happen on any specific occasion.

    So, if there is a real possibility that a claimant with epilepsy might have a seizure whilst cooking
    then they reasonably require supervision for this activity, even though the chances of a seizure
    happening on any specific occasion may be quite small.

    They should score points for needing supervision even if they don’t actually have anyone to provide
    it.

    But the Upper Tribunal went even further than this.

    They ruled that where a claimant is at risk all the time, then they may also be at risk when carrying
    out PIP activities that do not carry any additional likelihood of harm.

    So, a claimant may not be at any additional risk of harm if they have a seizure when using the toilet
    or taking medication, for example. But, because they are at risk whatever they are doing, then we
    would argue that they still reasonably require supervision during these activities, because they
    cannot do them safely without supervision.

    Going out

    Upper tribunal ruling on safety and supervision
    See ‘Safety and supervision’ above for more on this decision.

    In CPIP/1599/2016, the Upper Tribunal held that claimants do not have to show that they would be
    at risk ‘more often than not’ in order to reasonably require supervision when carrying out an activity.

    So, if you need someone with you when walking outdoors because you have epilepsy, for example,
    and may need assistance if you have a seizure, then we would argue you should score 12 points for
    this activity.

    This should be the case even if you have seizures only rarely, if they are potentially very serious.

    ---------------------------------------------------------------------------------------------------------------------------------
    You've already received some great advice from other people.

    I hope you may take the time to also read the excerpts I've included. Sorry it's lengthy, but I hope it may explain how you would probably score way more points than you've thought for both the daily living & mobility components of PIP.



  • mac1976
    mac1976 Community member Posts: 63 Listener
    Thank you so much. I’ve been looking through the net to see about epilepsy and pip. Maybe the welfare rights man I spoke to was having a bad day. He didn’t seem to confident I’d score points. The citizens advice was so helpful. They said they will help to fill the form in if I needed them. I just might reconsider and give it a go. Thank you for advice from everyone. You have all been a great help. I wear my heart on my sleeve so need to get things out. Thank you again. Xx
  • saz11
    saz11 Community member Posts: 121 Pioneering
    ? Good for you. 
  • chiarieds
    chiarieds Community member Posts: 16,007 Disability Gamechanger
    edited October 2019
    @mac1976 - Delighted to read you may reconsider, & Citizens Advice have undoubtedly helped many people with PIP.

    On a personal note, I too have an 'invisible disorder,' as do many others here. I'm in pain the moment I'm upright.....so you certainly can't see that either!

    Just fill in your form completely honestly, then there will be no surprises at your assessment, as they just go through where you've described problems in this; that's all.

    Another thing; you mention bladder incontinence following epileptic attacks. You can write about this in the additional pages at the end of your form, even if they don't necessarily fit elsewhere....that would be where to comment on having to change your clothing; bedding etc., & any help you might need to do so.

    Remember, just ask any questions you need. As Chloe said, this community will support you in any way we can.
  • mac1976
    mac1976 Community member Posts: 63 Listener
    Morning I’ve been to the doctors this morning. She has given me a report path. It’s got all my medication on plus the date i started with epilepsy. The is 2 different dates on. 1992 twice and 1994. Just says epilepsy. Will that be enough for me to send with my form. 
  • mac1976
    mac1976 Community member Posts: 63 Listener
    Just a question with my epilepsy sometimes I get a sudden warning with a numbness going down my arm but that’s it then I’ve gone but other times I don’t get anything at all. Should I just explain it how it is. I can’t get myself anywhere safe in that time between the warning and fit. 
  • poppy123456
    poppy123456 Community member Posts: 53,357 Disability Gamechanger
    mac1976 said:
    Morning I’ve been to the doctors this morning. She has given me a report path. It’s got all my medication on plus the date i started with epilepsy. The is 2 different dates on. 1992 twice and 1994. Just says epilepsy. Will that be enough for me to send with my form. 
    Do you have more evidence than that? That won’t be enough because that doesn’t tell them anything about how your conditions affect you against the PIP descriptors. 
    I would appreciate it if members wouldn't tag me please. I have all notifcations turned off and wouldn't want a member thinking i'm being rude by not replying.
    If i see a question that i know the answer to i will try my best to help.
  • mac1976
    mac1976 Community member Posts: 63 Listener
    I will go back it wasn’t my doctor just a fill in so she had never seen me before. I just don’t like bothering anyone if I don’t have to. Do I need to get something from the doctors. I’ve started filling my form in. I think I’m babbling on a bit on it. I’ve read it back it’s sort of sounding like a story. That’s how I’ve exsplained it in my own words. I hope I’ve not messed up on it. 

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