I’m a new member ( hi all ) looking for some light at the end of what feels like a very long tunnel. — Scope | Disability forum
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I’m a new member ( hi all ) looking for some light at the end of what feels like a very long tunnel.

tastytom Member Posts: 18 Connected

Hi one and all, I am a shiny new member to this group, I joined earlier today. My head is all over the place at the moment and I just don’t know where to turn to next ( I’m not even sure if this is the correct place to post a query! )  I have epilepsy and am currently in receipt of DLA but am in the midst of the pure trauma of applying for PIP at the moment...I feel like my head is going to explode and that I’m already fighting a losing battle as I have heard so many nightmare stories of others with epilepsy being refused an award...it all just makes me feel so stressed and unworthy which in turn only makes my epilepsy worse. Are there any other epilepsy suffers out there currently feeling as low as I am?
There is so much else I’d love to get off of my chest as I feel like I’m struggling to cope with my severe medical condition and it’s endless symptoms and now I’m thrown into the sheer hell of PIP. 
Any words of wisdom or support would be very greatly appreciated. 


  • cristobal
    cristobal Member Posts: 984 Disability Gamechanger
    edited August 2019
    @tastytom - I never claimed DLA only PIP but they are two different benefits - the fact that you qualify for one doesn't necessarily mean you qualify for the other.

    PIP is about how your condition prevents you carrying out with daily tasks - it's individual to you - and the fact that some people with epilepsy were refused has no bearing on your case so don't worry.

    Search on line for the PIP 'descriptors' and you'll get an idea of what's needed - when you get the form write down how you can/can't do them, whether you ned help, aids or supervision etc...

    Good luck...post again if you get stuck and need more help...
  • tastytom
    tastytom Member Posts: 18 Connected
    Sorry I should have said that I’ve already completed the application form and two weeks ago a nurse came to my home to discuss my claim/needs ( I’m not sure why I wasn’t called to their offices for the interview and she said she didn’t know why either.
    Ive since requested a copy of her report and only seem to have been awarded a grand total of 4 points! I haven’t had my official decision letter as of yet...I’m worried sick by the whole thing. 
  • poppy123456
    poppy123456 Member Posts: 31,373 Disability Gamechanger

    They mostly go with the report, it's very rare to go against it. As you say you've only scored 4 points then this isn't enough for an award. You will of course need to wait for a decision to be made but you can start to write the Mandatory Reconsideration letter of request while you wait for the decision. Once it's made you'll have 1 month from that date to send the letter of request.

    When writing the letter you should state where you think you should have scored those points and your reasons why. Adding a couple of real life examples of what happened the last time you attempted that activity for each descriptor that applies to you.

    Any evidence you have should be sent with the letter because they rarely contact anyone for this. The onus is on you to make sure it's sent. 

    Having some understanding of the PIP descriptors and what they mean will help you because as cristobal has said, DLA was different. These links will help you understand it more.

    You may also want to get some face to face advice from an agency near you and this link will help you find what's local to you.

  • saz11
    saz11 Member Posts: 121 Pioneering

    Sorry to hear this is causing you distress i do understand. I also have epilepsy and recently had a renewal assessment which led to me losing my daily living award. I did however submit MR which took 10 weeks but i am happy to say i won.

     I wouldn't be able to you any better advise than already given by @cristobal

    Stay strong i hope you feel better soon.

  • steve51
    steve51 Member Posts: 7,153 Disability Gamechanger
    Hi @tastytom

    Good Evening & Welcome!!!!!!!

    Yes I’m in the same boat/ship with regards to “pip”

    We have a number of members who have epilepsy & are also going through the pip process.


    Please please let me know if you need any further help with your pip ?????

  • Ails
    Ails Member Posts: 2,256 Disability Gamechanger
    Hi @tastytom and welcome to the Community.  It is nice to meet you and thanks for sharing with us.  Yes, PIP is confusing, frustrating and one big headache, but you will get there!  Lots of members on here to support you with PIP and Epilepsy so please just let us know if we can be of any further help to you.  Good luck with PIP and all the best.  :smile:
    Winner of the Scope New Volunteer Award 2019.   :)
  • tastytom
    tastytom Member Posts: 18 Connected
    Hi, thanks for the warm welcome.
    2 weeks ago I actually had  nurse come to my home to carry out the face to face interview, I thought it had all gone as well as I could have hoped but I requested a copy of her report and was shocked to see that I was only awarded a grand total of 4 points! I haven’t received my official decision letter as of yet but it certainly looks like I’m going to be refused.
    I’m currently having between 6 to 10 grand mal seizures per week and really struggling with all of the other issues associated with my condition....I have absolutely no warning of a seizure and hit the deck like a tonne of bricks...I’m a danger to myself when doing day to day tasks such as bathing and preparing/cooking my meals but the nurse said in her report that I could use a microwave and gave me zero points....it’s all very distressing for someone like myself who is permanently in the midst of “seizure fog” 
    I often have seizures and sleep for hours afterwards and mess up taking my meds at the right time...it’s a never ending nightmare.
  • Ails
    Ails Member Posts: 2,256 Disability Gamechanger
    I'm sorry to hear about your PIP face to face interview, @tastytom.  That seems very unfair.  I'm sure some of our members will be able to best advise you on where to go from here with it.  Are you receiving any support with regards to your seizures?  Please keep in touch and let us know how you are getting on.
    Winner of the Scope New Volunteer Award 2019.   :)
  • tastytom
    tastytom Member Posts: 18 Connected

    Thanks for your kind words.
    Its so good to hear that you eventually won after submitting an MR, I will certainly go down the same route as I do feel that my circumstances merit some level of award at least. On the day that the nurse visited my home to carry out the face to face assessment I’d actually had a grand mal seizure during the previous night so I was feeling ever so tired and confused so possibly I didn’t press my needs as well as I could ( and should have ) 
    Im having between 6 and 10 full seizures per week so life is certainly hard to say the least. 
  • saz11
    saz11 Member Posts: 121 Pioneering

    Hi i feel your frustration...epilepsy can be very hard to understand as its not visible., i also find it hard to explain to people. When i did my MR i simply recorded everything that affects my daily life and why. I also included some previous incidents were i sustained serious injuries.

     I found doing this i was able to describe better how epliepsy has changed my life and in giving them a better understanding of my capabilities.  I didn't really go into much more than that and i believe i came across calm and polite. My current award is enhanced mobility and standard daily living. 

    Before my renewal assessment this was also my award ......but only awarded enhanced mobility after assessment.  MR was for daily living which was successful.  I like you kept reading all the stories that were not successful but until you get the decision in writing you just don't know.

    Let me know if you need any assistance i am more than happy to help if i can.


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