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Epilepsy PIP 2019

IHaveEpilepsy81IHaveEpilepsy81 Member Posts: 31 Connected
Hi,

I have epilepsy and syncopated attacks, they come without any warning and are uncontrolled.  All medical evidence states this and also states very accurately that I am at risk in all aspects of activities stated in the pip form.

i have scored 12 points for mobility but only 6 for daily living.  The reports states I need supervision while bathing due to the danger, yet I don’t need supervision to cook or eat? When clearly there would be a danger in the activities. 

Anyone else having similar issues?


Thanks

Replies

  • IHaveEpilepsy81IHaveEpilepsy81 Member Posts: 31 Connected
    I have no warning prior to seizures and have post ictal confusion after seizures for long periods.  All medical evidence states this and it’s  feel it’s been overlooked.  Epilepsy, no warning, hot pans, hot water, hot food, knives, makes no sense.  Hopefully tribunal agree with my evidence and over rule it. 
  • Chloe_ScopeChloe_Scope Scope Posts: 10,653 Disability Gamechanger
    Hi @IHaveEpilepsy81 and welcome to the community! I'm sorry to hear you did not get the points you needed. Was this from a mandatory reconsideration or from the initial assessment? 
    Scope

  • cristobalcristobal Member Posts: 968 Disability Gamechanger
    edited July 2019

    @IHaveEpilepsy81 - I wonder if this might help you understand the reasoning around safety? (I’m not an assessor)

    You have to take into account two things - the frequency of an event happening vs the consequences if it does.

    You could have a seizure whilst cooking. This isn’t very likely - since most people only cook a couple of times per day - but the consequences could be catastrophic - for example if there was something on the stove and the house caught fire whilst you were in a confused state.

    The risk is unacceptable so this isn’t safe.

    The chance of seizure remains the same - fairly low - when using a microwave but the consequences are a lot less severe. The microwave will switch off at the end of the cooking period so there’s no danger of a catastrophic fire.

    The risk, in the eyes of the DWP, is acceptable and it is safe to use a microwave.

    If you ask for MR I wonder if it is worth mentioning how often your seizures occur, and how you deal with cooking, eating etc at the moment.

    Good luck - whatever you decide….


  • cristobalcristobal Member Posts: 968 Disability Gamechanger
    @IHaveEpilepsy81 - I've just found this in the DWP guidelines which might help. I'm not sure what 'altered consciousness' means as I don't know a lot about epilepsy.

    For claimants who experience seizures 1e might apply to those where there is strong evidence that the altered consciousness is unpredictable and that they would not reliably be able to use a microwave.

  • IHaveEpilepsy81IHaveEpilepsy81 Member Posts: 31 Connected
    Hi @IHaveEpilepsy81 and welcome to the community! I'm sorry to hear you did not get the points you needed. Was this from a mandatory reconsideration or from the initial assessment? 
    From both Chloe 
  • IHaveEpilepsy81IHaveEpilepsy81 Member Posts: 31 Connected
    cristobal said:

    @IHaveEpilepsy81 - I wonder if this might help you understand the reasoning around safety? (I’m not an assessor)

    You have to take into account two things - the frequency of an event happening vs the consequences if it does.

    You could have a seizure whilst cooking. This isn’t very likely - since most people only cook a couple of times per day - but the consequences could be catastrophic - for example if there was something on the stove and the house caught fire whilst you were in a confused state.

    The risk is unacceptable so this isn’t safe.

    The chance of seizure remains the same - fairly low - when using a microwave but the consequences are a lot less severe. The microwave will switch off at the end of the cooking period so there’s no danger of a catastrophic fire.

    The risk, in the eyes of the DWP, is acceptable and it is safe to use a microwave.

    If you ask for MR I wonder if it is worth mentioning how often your seizures occur, and how you deal with cooking, eating etc at the moment.

    Good luck - whatever you decide….


    They aware that me seizures are quite frequent Cristobal that medical evidence speaks for itself.  What I can’t understand is how can someone state that the chance of having an epileptic fit is fairly  low, when the person has uncontrolled epilepsy and has no warning to the attack’s?

    Welfare rights have said that the case law regarding safety and supervision is being awarded correctly at the tribunal stage.   
  • IHaveEpilepsy81IHaveEpilepsy81 Member Posts: 31 Connected
    cristobal said:
    @IHaveEpilepsy81 - I've just found this in the DWP guidelines which might help. I'm not sure what 'altered consciousness' means as I don't know a lot about epilepsy.

    For claimants who experience seizures 1e might apply to those where there is strong evidence that the altered consciousness is unpredictable and that they would not reliably be able to use a microwave.

    I think they are ignoring the correct points to score and hoping people just accept it.  This clearly means I should not scored more but I haven’t.  
  • cristobalcristobal Member Posts: 968 Disability Gamechanger

    I'm not at all suggesting that the chance of having a seizure is low - I don't know that, only you do really. What I meant is that the risk of having a seizure when it would cause safety issues in relation to preparing food is low.

    If you cook twice a day the chance of a seizure coinciding with you taking food out of the microwave is low, as there are only a few  minutes every day when this occurs. 

    I apologise if you believe that I am understating your condition. That wasn't my intention - I was just trying to explain the safety angle in the genuine belief that it would help you.

    Good luck in your tribunal...


  • IHaveEpilepsy81IHaveEpilepsy81 Member Posts: 31 Connected
    cristobal said:

    I'm not at all suggesting that the chance of having a seizure is low - I don't know that, only you do really. What I meant is that the risk of having a seizure when it would cause safety issues in relation to preparing food is low.

    If you cook twice a day the chance of a seizure coinciding with you taking food out of the microwave is low, as there are only a few  minutes every day when this occurs. 

    I apologise if you believe that I am understating your condition. That wasn't my intention - I was just trying to explain the safety angle in the genuine belief that it would help you.

    Good luck in your tribunal...


    I understand what your saying and it’s makes sense what your saying thank you for helping Cristobal.  
  • Chloe_ScopeChloe_Scope Scope Posts: 10,653 Disability Gamechanger
    I'm sorry you've already been through a MR @IHaveEpilepsy81 and I understand how stressful and frustrating this can be. Have  you started the tribunal process? Here is some information about the tribunal process and I hope it goes okay!
    Scope

  • saz11saz11 Member Posts: 121 Pioneering
    @IHaveEpilepsy81 Just wanted to check in and see how you are today ?. I have just come off the phone to DWP and yet again still no decision has been made on my MR . Can i ask was this a renewal assessment you had or new claim ?.  The reason i ask is as i posted yesterday i was in receipt of daily living component awarded till jan 2020 but after renewal assessment was stopped  May 2019.... and just to point out only took them 6 days to make this decision after my assessment and stop payments of pip and sdp but now nearly 8 weeks after MR request still no decision......something tells me thats not right.  
  • poppy123456poppy123456 Member Posts: 22,218 Disability Gamechanger
    There's no timescales for any decisions. 10 weeks is the guideline for MR decisions but sometimes it can take longer. Most MR decisions remain the same though.
    Proud winner of the 2019 empowering others award. This award was given for supporting disabled people and their families for the benefit advice I have given to members here on the community.
  • IHaveEpilepsy81IHaveEpilepsy81 Member Posts: 31 Connected
    Mine was a transfer from dla to pip. Welfare rights did say to me the only way to get pip for epilepsy now is tribunal as assessors are basically being told to not score the points sufficient enough for an award of daily living.  I can only say given my situation and the medical evidence provided it’s clear I score the points needed.  Yet a half hour assessment with these people and your all cleared of any illness and have made a miraculous recovery.  
  • woodbinewoodbine Community Co-Production Group Posts: 4,388 Disability Gamechanger
    edited July 2019
    I had an assessment 4 weeks ago for PIP from DLA and I have epilepsy, the assessor seemed to know a lot about epilepsy (she said she had worked in that field) and was thorough, I have around 12 tonic seizures a month and 4-5 absences a day. I have a good idea of the award I should get but time will tell, I also have no warnings, can be incontinent, suffer post ictal attacks that can take away my speech or limb movement, the medication also gives me severe sight problems most days. Like I said we will wait and see !
    "Putting a child into care, isn't caring for a child" (T.Rhattigan)
  • saz11saz11 Member Posts: 121 Pioneering
    @IHaveEpilepsy81
     I get were you are coming from. You go to these assessments and be open and honest which i don't know about you but i find very difficult  talking about my condition and how badly it has affected and changed my life. I don't get  why they ask all these question then report something totally different from what you have said . My letter to the DWP for MR i detailed everything whether it will make any difference i am not sure.
    I am getting to the point that i am really struggling with it all (maybe just a bad day). I live alone and safety must be my first priority so what they don't understand about that baffles me. 
  • saz11saz11 Member Posts: 121 Pioneering
    @woodbine.
    I hope all goes well for you fingers crossed. 
    I only waited 6 days from when i had my renewal assemement to get a decision. You read and hear that many different stories its hard to get  your head around. I even spoke to DWP to voice my concern on why
    they reduced my award and the person i spoke to  said that they totally agreed with me and my points shouldnt have been reduced. 
  • IHaveEpilepsy81IHaveEpilepsy81 Member Posts: 31 Connected
    @woodbine good luck with your situation you must be alarmed at reading my issues as we seem pretty similar, I have no faith in the PIP or ESA application it seems the best way to go on is get your medical evidence up to date get as much evidence off your specialist as you can, your GP letter will help but they can disregard this, and prepare for a fight.  
  • Chloe_ScopeChloe_Scope Scope Posts: 10,653 Disability Gamechanger
    Hi @woodbine, I really hope you get the decision you deserve! 
    Scope

  • skeg1960skeg1960 Member Posts: 15 Connected
    I have epilepsy and scored 16 points for mobility and 8 points for care the nurse was very nice I told her I used a microwave but pointed out you could still burn yourself by say dropping a dish of hot soup on your foot which I have done. she agreed   this could happen. I did did not ask for an mr as I thought the award was fair and I did not want to go through any more stress. I also get esa and I am in the support group. good luck and I hope this helps
  • saz11saz11 Member Posts: 121 Pioneering
    @skeg1960

    Good to hear a success story ....gives me hope

    Well done.
  • IHaveEpilepsy81IHaveEpilepsy81 Member Posts: 31 Connected
    @skeg1960 finally a positive outcome but a very rare one probably.  My report from the assessor stated I could cross the road by lights to limit any danger, work that one out, she also says I can’t drive because of the dangers with my epilepsy but I can cook using a cooker or microwave as a fit during cooking is less likely to happen.  
  • IHaveEpilepsy81IHaveEpilepsy81 Member Posts: 31 Connected
    I would like to see if anyone has success story’s via a tribunal with case law being used.  
  • saz11saz11 Member Posts: 121 Pioneering
    @IHaveEpilepsy81

    Hi just thought i would give you a quick update. I heard today my MR decision has been successful. Here,s hoping we hear many more success stories. 
  • atlas46atlas46 Member Posts: 827 Pioneering
    Hi @IHaveEpilepsy81

    Have a look at Disability Rights UK, they have a caselaw section and provide an easily understood narrative.

    You should seek face to face advice from a welfare rights officer.

    Keep us informed.

    Best wishes

  • IHaveEpilepsy81IHaveEpilepsy81 Member Posts: 31 Connected
    Thank you guys and well done @saz11 what further medical evidence did you send in order for them to change their decision and what activities were you awarded in if you don't mind sharing.  


  • saz11saz11 Member Posts: 121 Pioneering
    @IHaveEpilepsy81

    Hi i didn't send in anymore evidence just a covering letter explaining in detail how my disability affects me. I believe the detailed information i gave them helped in giving them a better understanding of how my disability affects my daily life in assisting them scoring my capabilities. I kept the letter to my health issues only and i thnk i came across in a clam , polite manner.

    I was awarded a further 2 points for cooking and preparing food: i previously scored 1c now 1e

    I already had enhanced mobility award.

    Hope this helps and if you need any further help please just let me know.

  • April2018momApril2018mom Posts: 2,869 Member
    I am tagging @poppy123456 as she will be able to help you
  • poppy123456poppy123456 Member Posts: 22,218 Disability Gamechanger
    Thanks. There's no other advice i can offer, other than what's already been given in previous comments by others.
    Proud winner of the 2019 empowering others award. This award was given for supporting disabled people and their families for the benefit advice I have given to members here on the community.
  • saz11saz11 Member Posts: 121 Pioneering
    @poppy123456

    Hi Poppy i agree i don't know of any other advise you could give

    I am fortunate enough to have been successful with my MR  Hopefully @IHaveEpilepsy81 you have more success at tribunal.
  • IHaveEpilepsy81IHaveEpilepsy81 Member Posts: 31 Connected
    I am only 2 points short and I feel in the cooking part I should receive this at tribunal given I have no warning to a seizure but thanks to all of you who have commented and offered advice.  

    Best wishes 
  • saz11saz11 Member Posts: 121 Pioneering
    @IHaveEpilepsy81

    Do you know when your tribunal is yet ? 
     

  • woodbinewoodbine Community Co-Production Group Posts: 4,388 Disability Gamechanger
    saz11 said:
    @woodbine.
    I hope all goes well for you fingers crossed. 
    I only waited 6 days from when i had my renewal assemement to get a decision. You read and hear that many different stories its hard to get  your head around. I even spoke to DWP to voice my concern on why
    they reduced my award and the person i spoke to  said that they totally agreed with me and my points shouldnt have been reduced. 
    I haven't had the decision yet but have had the PA4 (a copy of the assessors report) which indicates 11 points for care and 22 for mobility so if the DM sticks with th |s I should get standard care enhanced mobility, on DLA I was on mid care low mobility.

    "Putting a child into care, isn't caring for a child" (T.Rhattigan)
  • saz11saz11 Member Posts: 121 Pioneering
    @woodbine

    I would have thought you would have had a decision by now i hope they go with the report and award you.
    I had to endure the dreaded MR but fortunately on Friday i found out i had been successful. I hope to hear more successful outcomes in the future.
  • IHaveEpilepsy81IHaveEpilepsy81 Member Posts: 31 Connected
    Just to update you guys I had my tribunal today.  I got enhanced enhanced.  Judge was adamant that the case law regarding uncontrolled epilepsy is very clear at tribunal stage.  Good luck to anyone fighting the DWP!!
  • saz11saz11 Member Posts: 121 Pioneering
    @IHaveEpilepsy81

    That is absolutely fantastic news....i am so happy for you.

    I know it has been a real struggle for you having to fight this but look how strong you have been and won.

    You went with what you believed what was correct and fair and the outcome speaks for itself. Well done you 🙂 x 
  • IHaveEpilepsy81IHaveEpilepsy81 Member Posts: 31 Connected
    Thank you it’s not something I would recommend I waited almost 18 months in total and unfortunately became more ill than I was but it’s over.  Thanks for your support and all your comments 
  • Chloe_ScopeChloe_Scope Scope Posts: 10,653 Disability Gamechanger
    Hi @IHaveEpilepsy81! That's amazing news!! Thank you for updating us! :)
    Scope

  • saz11saz11 Member Posts: 121 Pioneering
    @IHaveEpilepsy81

    No i totally understand not recommended going through the MR was stressful enough.

    Time now to concentrate on getting your health back on track and enjoying life.

    Keep smiling happy days ahead 🙂🙂
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