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PIP assessment for epilepsy. What should I expect?

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isra92
isra92 Community member Posts: 8 Listener
edited April 2022 in Start here and say hello!
Hi All 

I’m pretty new to this forum. I have a face to face PIP assessment coming up soon. I’ve never claimed DLA Before either, my seizures have increased over the passed year. I have seizures every 4 months without a fail which sucks.

My arm is currently in a sling due to surgery - I dislocated my shoulder during one of my seizures, and had a recent on Monday which resulted in another trip to A&E. I have evidence of both, I.e. letters, appointments, meds etc.

I’m just wondering what to expect at this assessment? 
Thanks 

Comments

  • poppy123456
    poppy123456 Community member Posts: 55,309 Disability Gamechanger
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    Hi,
    If you kept a copy of the form you fill in (you should have) then have a read of this before the assessment. This will remind you of what you wrote. 
    If the assessment is by telephone make sure your phone is fully charged and have a drink near you. 
    They will ask you questions based on how your conditions affect you. I’m sure you’re aware that PIP isn’t awarded based on any diagnosis. 
    Assessment length can be anything from 20 - 120 minutes. 
    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.
  • Tori_Scope
    Tori_Scope Scope Posts: 12,505 Disability Gamechanger
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    Welcome to the community @isra92 :) It's nice to meet you!

    Thank you for posting about your PIP assessment. Many people find themselves feeling a bit nervous before the assessment, but the assessor should be polite and respectful towards you. 

    I'd second the advice given by poppy123456 above. It may also be worth giving the PIP descriptors (pipinfo.net) a re-read, along with the evidence you provided on your form if possible. 

    Best wishes for the assessment, and please do let us know how you get on!
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  • SaraC_Scope
    SaraC_Scope CP Network, Scope Posts: 45 Courageous
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    Hi @isra92 I hope you are feeling better after your recent hospital visit.  I have Cerebral Palsy and Epilepsy and had a PIP assessment a few years ago.  With epilepsy I think it's important to highlight all the things you are restricted in doing, in case you have a seizure.  I can't shower unless someone is in the house and always have to be accompanied when going out.  From a safety perspective cooking can be an issue as well.
    Although my parents encouraged me to be semi-independent, when completing the form and having the assessment, I had to be honest with myself and tell them I still need support from others and always will.  Good luck
  • woodbine
    woodbine Community member Posts: 11,817 Disability Gamechanger
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    hi @isra92 and welcome to scope I get standard rate care and enhanced mobility for my severe epilepsy, I have on average 2-3 tonic seizures per week and 4-5 vacancies every day.
    I was lucky when I first claimed pip moving from dla, as the assessor understood my condition and the problems I have, it will be a good idea to look at the descriptors before your assessment.
    Are your seizures controlled in anyway by medication? does the medication you take have side effects (mine has awful ones) ?
    Make sure you make notes of any points you want to get across.
    The assessor will go with the questions their pc screen tells them to ask, you can take someone with you but normally they won't be involved.
    Good luck
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  • isra92
    isra92 Community member Posts: 8 Listener
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    Hi All,

    thank you for your comments and support.

    I had my assessment today, I took notes and stuff - she only asked me question about what medication I’m on and my recent surgery to the shoulder I told her the new medication I have started and made her read the discharge letter which covered my epilepsy history. As well asking whether I get any warning before my seizures occur.  She was really lovely but it was a quick assessment like half n hour she was a nurse herself and her brother suffered from tonic clonic seizures as well.

    She asked whether I ever hurt myself during cooking and I explained that I was making tea once and burnt my leg since then my family watch me when I’m in the kitchen or having a shower. I explained that I can’t shower without people in the same house. Life is frustrating, I explained it’s hard I want to move out but I can’t as I’m dependent on other people and she did a physical assessment like moving my arms around which was strange. Didn’t really ask anything about mobility or anything just asked how I got there. 

    So I guess I will just have to see I. A few weeks if I did get it or not. 


  • Alex_Alumni
    Alex_Alumni Scope alumni Posts: 7,562 Disability Gamechanger
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    Well done @isra92 you've done the hard part now :)

    Hopefully it won't be too long a wait for you, but if you can focus on other things and the time will fly by!

    Please do ask if any questions come up in the meantime, and enjoy your evening.

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    Online Community Coordinator
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  • isra92
    isra92 Community member Posts: 8 Listener
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    Hi All,

    just thought I’d update you. I received my pip report and I’m disappointed as majority of the things I discussed or raised concerns just as having my family members help with medication or the fact that I can’t eat due to tongue bite or that it takes me couple of days to recover was not mentioned. 

    It was a quick assessment and the fact she said I was managed to do everything even though my arm is in a sling. I also expressed that people have to help me dress and shower and the fact I can’t do it alone she ticked it as being able to do it. By the looks of it I think I may have only scored 4 points on daily living and 12 on mobility. I’m still awaiting decision but I’m just very disappointed she didn’t even ask half of the questions she just assumed majority of the things.

    just thought I’d share the disappointment of the outcome. 

    Thanks all! 
  • calcotti
    calcotti Community member Posts: 10,010 Disability Gamechanger
    edited April 2022
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    Given that PIP is about difficulties and needs that you have had for three months already and expect to continue for another 9 months, the fact that your arm is currently in a sling as a result of surgery is likely to have been treated as not relevant if the expectation is that your arm will recover.
    Information I post is for England unless otherwise stated. Rules may be different in other parts of UK.
  • isra92
    isra92 Community member Posts: 8 Listener
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    @calcotti - the box has been ticked for both though so it’s confusing 
  • poppy123456
    poppy123456 Community member Posts: 55,309 Disability Gamechanger
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    isra92 said:
    @calcotti - the box has been ticked for both though so it’s confusing 
    That doesn’t mean your arm was taken into consideration for any of the activities.
    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.
  • isra92
    isra92 Community member Posts: 8 Listener
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    I’ll just have to wait and see what they say. 
  • woodbine
    woodbine Community member Posts: 11,817 Disability Gamechanger
    edited April 2022
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    You did mention in your first post that you have seizures every 4 months, on that basis I'm surprised that you even scored 4 points for daily living but not surprised that you scored 12 for mobility, you mentioned that your arm is in a sling after surgery I assume that won't be for long.
    My point is and I hope you can see that I'm trying to be helpful not negative, the quote below is from google which I hope explains what I'm getting at;


    Under PIP, if a condition or disability affects you more than half the time, it has to be treated as affecting you all the time. Equally, if a condition or disability does not affect you half the time, then it can be disregarded or ignored for PIP purposes. This is known as the 50% rule.

    PIP and epilepsy are strange bedfellows, it is all about how often you have seizures, how those seizures affect you, how medication does or doesn't work, side effects from meds and also if you get any warning of oncoming seizures.
    Keep in mind that the report you have received is in no way a decision, that will now take between 2 and 12 weeks.
    Fingers crossed.
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  • isra92
    isra92 Community member Posts: 8 Listener
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    No I get that 100% - the point is just because I’m not having a seizure every single day doesn’t mean my lifestyle isn’t affected. And I explained that to the assessor how it’s affected my memory, my family having to watch me take my
    meds reminding me to feed myself from wanting to be more independent but not being able to because of my epilepsy.

    Yes my arm won’t be in the sling long - but my recent seizure landed me in hospital due to bruising on my face and getting x-ray on my arm as my seizure affects the right side of body and I had the surgery on the right shoulder. The work they did potentially could be undone - which could result in potential another surgery. I’ve been put on new medication to get better control of the seizure. I’ve had epilepsy since I was 18 I’m 30 now this is the first time I applied for PIP due to the fact that it is affecting my life differently now. 

    However In the report - things that weren’t even asked had been answered by the assessor which has **** me off as each of the things should have been asked rather than assumed. 
  • woodbine
    woodbine Community member Posts: 11,817 Disability Gamechanger
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    Ok assume the DM decision is an award suggested by the HCP you can ask for an MR (mandatory reconsideration ) at that point you can point out where you didn't score points and didn't giving real life examples.
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  • isra92
    isra92 Community member Posts: 8 Listener
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    The point is I did - she did not include them in the report and the assessments questions were missed out or not asked. 
  • poppy123456
    poppy123456 Community member Posts: 55,309 Disability Gamechanger
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    isra92 said:
    The point is I did - she did not include them in the report and the assessments questions were missed out or not asked. 

    You're missing the whole point of what the assessment process is for. It's not there for them to write what you said verbatim. It's for them to gather more evidence to support your claim. The report is their opinion based on everything you sent (including the form) and what you said during the assessment.

    Not sure what you mean by this..
    isra92 said:
     and the assessments questions were missed out or not asked. 



    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.
  • isra92
    isra92 Community member Posts: 8 Listener
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    Hey all,

    Sorry I haven’t been active on here. Yeah I understand the process of PIP a lot better now I still have no heard anything from them. I just know they had requested more information from my GP and they have all the information they need now to make a decision. 

    Whatever the outcome will be I will accept it and just deal with it.
  • L_Volunteer
    L_Volunteer Community Volunteer Adviser, Scope Member Posts: 7,983 Disability Gamechanger
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    That's okay @isra92. Please don't be sorry. It's more important that you feel comfortable posting and responding when you wish.

    We are all here for you and wish you the best of luck. If you need anything, please don't hesitate to let us know  :)
    Community Volunteer Adviser with professional knowledge of education, special educational needs and disabilities and EHCP's. Pronouns: She/her. 

    Please note: if I use the online community outside of its hours of administration, I am doing so in a personal capacity only.
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