PIP and Epilepsy — Scope | Disability forum
Find out how to let us know if you're concerned about another member's safety.

PIP and Epilepsy

mac1976
mac1976 Member Posts: 63 Listener
edited October 2019 in PIP, DLA, and AA
Hi I’m new here today. I’ve been on DLA for 16 years. Epileptic for 30 years. I’ve just had a letter telling me I have to claim pip. I’m starting to wonder if not to claim at all. The assessment process is worrying me. I’m losing sleep over it if I walk into a room they will think nothing is wrong with me. I’m so worried about it. 
«1345

Comments

  • mac1976
    mac1976 Member Posts: 63 Listener
    hi I’m new today and worried sick. I’ve been on DLA for 16 years epileptic for 30 years. I’ve just had a letter telling me I have to apply for pip. It’s the assessment side that I’m worried about. If I walk into a Assesment they will think nothing is wrong with me. I need help. 
  • mac1976
    mac1976 Member Posts: 63 Listener
    Can can someone please tell me how to remove this post please it’s put my phone contact in the discussion box thank you. 
  • Chloe_Scope
    Chloe_Scope Scope Posts: 10,565 Disability Gamechanger
    Hi @mac1976, what would you like me to change the title to?

    I'm sorry to hear this has caused you so much stress. I appreciate how difficult this change can be, and that they are not the same benefits. It may be worth looking at the descriptors to see if you would be entitled for PIP. We have had many members go through this process so we can support you through it.  
    Scope

  • Chloe_Scope
    Chloe_Scope Scope Posts: 10,565 Disability Gamechanger
    Hi @mac1976, just to let you know that I have merged your two discussions. :)
    Scope

  • mac1976
    mac1976 Member Posts: 63 Listener
    Thank you for replying I’m just so stressed with it and feel I won’t be belived. How can someone comment on what they can’t see. I’m starting to wonder if not claim at all. The is so much bad press about pip and epilepsy. Ps can you please change it to pip and epilepsy. Thank you. 
  • mac1976
    mac1976 Member Posts: 63 Listener
  • ozzy19721968
    ozzy19721968 Member Posts: 29 Connected
    Hi guys do the dwp follow what the report that was done bye capta when they make a decision about your pip claim 
  • mac1976
    mac1976 Member Posts: 63 Listener
    That’s what I’m worried about. How can someone who’s seen you for a hour know how your affected. I’d have to have a fit right in front of them or them see me after it’s happened. 
  • debsidoo
    debsidoo Member Posts: 325 Pioneering
    Hi @mac1976
     As everybody is switching from DLA to PIP it is always worth filling out the claim. Not all assessors are as bad as they are painted it’s just that you only tend to hear about the cases that fail.Successful applicants do not have to complain.
    Even though the criteria are slightly different there is lots of information out there and you can do an online PIP self test for some idea.
    After all if you don’t claim you’ll get nothing after your DLA runs out so accept any help you can get and good luck with your claim. @poppy123456 seems to be pretty clued up about how the system works.
       Debsidoo.x

  • Chloe_Scope
    Chloe_Scope Scope Posts: 10,565 Disability Gamechanger
    Thank you for your advice @debsidoo

    @mac1976, they are different benefits but you still could be entitled to it. There is also this article that goes through each descriptor in detail and may help you see which ones fit yourself.

    Please do let us know if there is anything else we can do to help. :)
    Scope

  • debsidoo
    debsidoo Member Posts: 325 Pioneering
    Hi guys do the dwp follow what the report that was done bye capta when they make a decision about your pip claim 
    Hi @ozzy19721968
    In general the DWP do go by the report offered by the assessor.You can request a copy to be sent to you.I suggest you call them after a week and ask.If it’s a negative report you do have the option of applying for a Mandatory Reconsideration if you feel evidence was misunderstood or if there were any pertinent points missed. Finally if this is unsuccessful you can always take it to Tribunal.
           Debsidoo.x
  • saz11
    saz11 Member Posts: 121 Pioneering
    @mac1976

    Hi having just read your post i wanted to let you know i also suffer from epilepsy and i am in receipt of pip for both daily living and mobility. I understand your concerns but i would advise you to proceed with your pip claim. 
    Not all outcomes are negative there are success stories i am one of them. 
    Try and not let it take over your life with worrying. I can only tell you my experience but my assessment wasn't at all bad i felt it was more of a chat however saying that my daliy living was stopped after assessment so you just don't know anything for sure. I appealed decision with MR and won.
  • mac1976
    mac1976 Member Posts: 63 Listener
    Thank you for your advice. It’s all the bad press with pip and epilepsy that I’ve seen. Can I ask how long your appeal Took. Just do I might know what to exspect. 
  • mac1976
    mac1976 Member Posts: 63 Listener
    Morning I’ve just been on the phone to welfare rights. Been told it’s now very hard to get pip with epilepsy. I think I’m going to have to find some help with filling my form in. I’m going to prepare myself to lose it. 
  • Dante
    Dante Member Posts: 14 Listener
    @mac1976 i have just been through the process of transition from a life time award of DLA to PIP all my problems are mental health as you say unseen with support from my GP i was awarded 10 points for daily living and mobility this got me standard rate PIP for each however i didn't agree with the daily living points so I asked for a mandatory review which i won and got an extra 6 points it is always worth a try get as much medical evidence of your condition as you can people on this forum are wonderful and will give you all the help and support along the way good luck 
  • mac1976
    mac1976 Member Posts: 63 Listener
    The is a lot of stigma with unseen. I asked a train conductor once how to apply for a disabled train pass. He asked me was I taking the p***. That was in front of a train full of passengers. Just wanted the ground to open up. 
  • saz11
    saz11 Member Posts: 121 Pioneering
    @mac1976

    Hi my assessment was on the 11th May and payments stopped on the 20th May. I applied MR on the 28th May and got my decision on the 31st July. 
    What you have to remember is pip is not about your diagnosis but how your disability affects you on a daily basis.
    I am sure you will make the right decision for you on whether to apply or not for pip. Please keep us updated and if you require any further help please just ask.


  • ozzy19721968
    ozzy19721968 Member Posts: 29 Connected
    Thanks got a copy of my report .the report has awarded me 12 points for living part and 12 points for mobility and to be reviewed in 2yrs was just wondering if the dwp change any of the remarks that the assessor gave me .the only thing I was concerned about said that I didnt have any restrictions on my driving licence when in fact it does he actually had my driving licence in his hand but he didnt look as I have to renew my licence every 3 years due to medical condition 
  • woodbine
    woodbine Community Co-Production Group Posts: 5,637 Disability Gamechanger
    I have epilepsy and was moved from DLA to PIP in the summer ended up getting more £ from PIP than I had on DLA the assessor was very professional and went into how my seizures affect me, it helps if you have copies of letters from your neurologist etc. OP how many seizures do you have on average say per month? I have about 12 grand mal and 120 absences per month, do you have any other conditions? e.g my epilepsy causes m to suffer from depression, and what side effects do you get from the medication, I have periods when my sight is badly affected.
    These are the sorts of things you need to highlight because its about the care and mobility issues not the epilepsy itself, another example I am not allowed to go out on my own due to the risk it would mean, have you ever been made aware of SUDEP?
    When you get the PIP forms I would suggest you contact them and ask for an extension on the return date, they usually give you two extra weeks no problem, use the time to research epilepsy and PIP its not right for anyone to suggest that its difficult for people who have epilepsy to get PIP. It can be done and is done.
    I am a person with epilepsy not an epileptic, my illness doesn't define me.
  • mac1976
    mac1976 Member Posts: 63 Listener
    I don’t have as many as you. Probably 3 grand mall a month. I’ve bern having a lot at night lately and losing bladder control. I’m on antidepressants have been for 5 years. I’ve been epileptic for 30 years. I don’t go out alone Or if I do I get a taxi to and from. I always feel tried. Can’t remember the day leading up to the fit. When I’ve done the pip test it’s only giving me 4 points for living bit 10 for mobility. Even though I need help to get changed when I’ve wet myself. 

Brightness

Do you need advice on your energy costs?


Scope’s Disability Energy Support service is open to any disabled household in England or Wales in which one or more disabled people live. You can get free advice from an expert adviser on managing energy debt, switching tariffs, contacting your supplier and more. Find out more information by visiting our
Disability Energy Support webpage.
Complete our feedback form and tell us how we can make the community better.