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PIP and Epilepsy

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Comments

  • mac1976
    mac1976 Community member Posts: 63 Listener
    I think I’ve covered most things. I have written that I’m quite embarrassed when I’ve a injury to my face that gets me down. I’ve covered the safety for outdoors and also bathing. I’ve never had the door locked on the bathroom since being a teenager. My parents wouldn’t allow it. I was always told it’s not safe. I’ve judt basically said I have to keep myself safe as I’ve no control over when it will happen. Don’t think that is much else I can say. Apart when that’s the way it is. Oh it dose say on my perception list 1992 epilepsy. I think that was when I was diagnosed. 
  • poppy123456
    poppy123456 Community member Posts: 53,330 Disability Gamechanger
    saz11 said:
    @poppy123456

    HI Poppy just to clarify my understanding of pip is not about providing evidence of you health condition its about how it affects you which i believe is the evidence that would be expected to be provided by a claimant. I was trying to reassure mac1976 that their health condition is not in question the evidence of their diagnosis is there if the DWP wish to review. If i am wrong in saying that please could you have my posts removed. Thank you

    You are correct in saying that it's not about the health condition, it's how it affects you. It's also not about a diagnosis.

    Lots of people assume that DWP and the health assessment providers will contact medical professionals for evidence but it very rarely happens.

    I'm not authorised to remove any posts because i'm not admin, i'm a Community Champion here. You have been very helpful here and i thank you for that but i just didn't want others reading this and thinking that DWP contact medical professionals, which is why i corrected that.
    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.
  • poppy123456
    poppy123456 Community member Posts: 53,330 Disability Gamechanger
    mac1976 said:
    I think I’ve covered most things. I have written that I’m quite embarrassed when I’ve a injury to my face that gets me down. I’ve covered the safety for outdoors and also bathing. I’ve never had the door locked on the bathroom since being a teenager. My parents wouldn’t allow it. I was always told it’s not safe. I’ve judt basically said I have to keep myself safe as I’ve no control over when it will happen. Don’t think that is much else I can say. Apart when that’s the way it is. Oh it dose say on my perception list 1992 epilepsy. I think that was when I was diagnosed. 
    Why do you have to keep yourself safe? You need to spell it out to them (so to speak) I know what epilepsy is because i have it myself, although i've been seizure free for many years thankfully.

    For example.. do you need someone with you when you shower/bath? If so then why do you need someone with you? What happened the last time you attempted to bath alone?

    When you go out do you go alone or do you need someone with you when you go? If you need someone with you why do you need someone? Have you ever been out alone or been left alone while out? If so what happened? These are the sort of things that you need to put on the forms. Use extra paper too because there's never enough of room to put all the information on the forms. Make sure you add you NI number and name to everything you send.
    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.
  • saz11
    saz11 Community member Posts: 121 Pioneering
    @mac1976

    Yeah as you say that's all you can do....the points i listed are some of the ones i came across. The thought of a f2f is very stressful but try and look at it this way.....its just another human being across the desk from you , just be you , take your time to answer questions they ask ,  don't worry about taking to long this is your time to make sure you get everything you want to say recorded for the report , dont feel pressured or let them led you into an answer.

    Honestly my f2f was fine and i wish i hadn't worried so much because at the end of the day you have no control over their decision but you do have control over you and let me tell you are strong enough to do this because us epilepsy sufferers are made of strong stuff as are all the other people who live with a disability and have fight just to have a decent quality of life.
    Things seem unfair at times but i just remember i am lucky compared to some people and i have been through quite alot of rubbish times in my life and the DWP wont get me down . Try and not let it get you down either. Please dont give up we are all here for.....even for just a moan ?
  • mac1976
    mac1976 Community member Posts: 63 Listener
    I’ve used a example of when I went to my local shop and had s fit. I came round with my coat being cut off me. I was taken out on a body brace as I’d gone face down. I had to have a scan once in A&E. I still couldn’t tell you to this day how I got to the shop. That’s quite worrring who knows I could have walked into the road. Luckily my sons friends mum works in the shop so my family was told I was there. 
  • Chloe_Scope
    Chloe_Scope Posts: 10,586 Disability Gamechanger
    Hi @mac1976, I appreciate how stressful this can be. You have had some really good advice here, so I hope it helps!
    Scope

  • mac1976
    mac1976 Community member Posts: 63 Listener
    I’ve been to see a fantastic benefits adviser today. He exsplaind things to me I didn’t even think of. The forms completed and ready to be posted. He’s told me if I have any problems just call him. Thanks everyone for being there for me this past few weeks. I will let you know the outcome when I know. Xxx
  • Chloe_Scope
    Chloe_Scope Posts: 10,586 Disability Gamechanger
    That's great news @mac1976! Thank you for updating us and we all have our fingers crossed!
    Scope

  • mac1976
    mac1976 Community member Posts: 63 Listener
    Morning I sent on form in 2 weeks ago. I got a phome call yesterday to say a assessment will take place at home on Saturday morning. Dose anyone know why they are coming to my house. 
  • poppy123456
    poppy123456 Community member Posts: 53,330 Disability Gamechanger
    Sometimes home asseessments take place without even asking for one, if the evidence you send suggests that it's needed. It doesn't mean anything other than it's in your own home. The process is the same as if it were at an assessment centre.

    Good luck and don't forget to request a copy of the assessment report about a week after the assessment.
    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
    Thank you I was getting a little worried that they are coming to have a look around my house to see how I live. 
  • ozzy19721968
    ozzy19721968 Community member Posts: 29 Connected
    Hi mac sometimes if you live to far from the assessment centre or they think it would be unsafe for you to travel to it .nothing to worrie about I had them come to my home to do the assessment. Keep calm and think before you speak and get it over how your disability affects you on bad days and you will be fine 
  • poppy123456
    poppy123456 Community member Posts: 53,330 Disability Gamechanger
    They won't ask to look around your home because that's not part of the assessment. It's not just about your bad days, you should tell them about all your days, even if you have good days or better days because it's about being honest.
    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
    Morning all I’ve had my assessment this morning. The nurse was very understanding and said epilepsy is not a very nice thing to have. I have got a injury to my eye from a seizure. So she saw that. She also mentioned that pip now take epilepsy seriously. I was asked did I have a job. It’s a zero hour contact so only go when I can I did explain that to her. I don’t want them to contact my employer as I don’t want them knowing my financial business. So think it went quite well. I was shaking when I passed her my ID don’t know what came over me. She was lovely and said she hopes I get the results I want when she was leaving. Dose anyone know if they contact a employer wasn’t asked who they are. 
  • poppy123456
    poppy123456 Community member Posts: 53,330 Disability Gamechanger
    It's very unlikely that they will contact your employer.

    Wait a week after the assessment and ring DWP for a copy of the assessment report to be sent to you, This will give you some idea what the decision is likely to be because they mostly go with the report. You'll still need to wait for the decision of course. Once the decision is made, if you're not happy then you'll have 1 month to request the MR. Good luck,.
    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
    She did say that I will most likely need a assessment in 1 to 2 years so not sure what she meant that. 
  • poppy123456
    poppy123456 Community member Posts: 53,330 Disability Gamechanger
    They are not supposed to say anything like that to you because it's not their job to do that and it definitely doesn't mean anything at this stage.
    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’m worried sick that they will contact my employer as I’ve never told them at work im on DLA. 
  • chiarieds
    chiarieds Community member Posts: 16,007 Disability Gamechanger
    Hi @mac1976 Please don't worry about them contacting your employer as they rarely even contact a person's doctors. You can work whilst you're getting DLA or PIP, so it doesn't matter anyway.
  • poppy123456
    poppy123456 Community member Posts: 53,330 Disability Gamechanger
    There would be absolutely no reason at all for anyone to contact your employer.
    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.

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