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PIP and epilepsy

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  • nikkij83
    nikkij83 Community member Posts: 42 Connected
    Justg72  yes only diagnosed in February 2018, had first tonic colonic seizure in april 2017 and loads of complex partial seizures since. Thinking back over my teenage years and speaking to my consultant jad the complex partial seizures since for a while  but i thought they were anxiety/panic attacks. Its all new to me not really come to terms with it all. All i know is know is how its changed me as a person and my whole life and relationships with people. Its awful. 

    Ive heard of an atos assessor continuing with the assessment whilst the claimant was having a tonic colonic seizure! She kept asking his wife questions whilsts he was having the seizure. Says it all really x
  • nikkij83
    nikkij83 Community member Posts: 42 Connected
    And on a personal note i feel totally alone. Like nobody understands what im going through/feeling. My husband trys his best to help.

    I dont know anyone personal who has epilepsy but know many people have it. My uncle did have it but he passed away 4yrs ago.

    Ive thought about joining the support group at the ridge medical centre but im unsure about going.
  • justg72
    justg72 Community member Posts: 173 Pioneering
    hi nikkij83
    I really feel for you because its so life changing I can vouch for that. I used to be very sociable and independent, I am not anymore so I fully understand where you are coming from its awful and scarey. I am hoping some day it will be under control. I bet you do not go out by yourself anymore because I dont I darent. I am like you I don't know anybody with it personally, none of my family have it so I don't understand where mine has come from. I understand about feeling alone my family don't understand how I feel. Lets hope that one day we will be cured by our meds. Ask your nurse for support if you do have to do an MR she will help you, mine is. xx 
  • nikkij83
    nikkij83 Community member Posts: 42 Connected
    Its life changing even though i tell myself its not going to take over it certainly has.

    My uncle had epilepsy but his was due to a brain tumour then he had mental health problems due to the operation to remove the tumour. He then died of heart failure.

     I too used to be so independent now all i want to do is stay at home where i feel safe x
  • justg72
    justg72 Community member Posts: 173 Pioneering
    Hi nikkij83
    How are you today? hope your okay any decision letter over the weekend?
    I forgot to tell you I have just added my story regarding epilepsy and PIP on the epilepsy action site and they have just published it on their site I have just added on scope unfairly treat by PIP have a read because I am wondering because there's so many been unfairly treat by PIP including ourselves! I wonder if there's anywhere else you can complain like the Ombudsman. Something needs to be done just looking at the scope site there's so many stories about how unfairly people have been treat and what about all the lies on peoples reports. Surely this needs looking into there's too many! also people with epilepsy and mental health conditions are getting discriminated against life's hard enough without having health conditions. Why are genuine people been refused benefits they are entitled to. I feel like setting a web page up and collecting all these horror stories and then going to the houses of parliament with them! I might write to Teresa May! I cant believe all the stories I have read just on the scope site and NOTHING isn't getting done. 
  • nikkij83
    nikkij83 Community member Posts: 42 Connected
    Hi justg72 
    No havent heard anything back yet. I still have another 2 weeks out of the 4 weeks they say they should reply within.

    Ive looked previously and there is loads of bad reports etc. Dwp are fully aware according to one article i read but nothing gets done.
  • justg72
    justg72 Community member Posts: 173 Pioneering
    Hi nikki
    Any news yet? hope you are ok! I thought I'd update you.
     I have had a response from the MPs wife, she said that she had given the brief account on what happened in my assessment and the report to her husband. I also mentioned the assessor, and her comparing my epilepsy to her husbands. If its ok by you I could mention how she treat you especially when you have had the final decision regarding PIP. let me know what you think? if you don't I will not mention it.  The MPs wife said that she had passed the information on to him for him to pursue on my behalf. I will see if this helps my MR appeal, I have heard that people who didn't score anything before got reassessed or had then received the PIP. MPs need to be aware of how people with epilepsy are been let down by the DWP because their condition is misunderstood. I am up to eyes in paper work trying to get my appeal together. If you get your decision and its not good and you need any help with your MR, I will be happy to help if I can just  let me know. I am starting my MR but my nurse is going over it and helping me tweak it. If you need an MP, maybe the one which I have contacted may look into your PIP. Are assessments were so a like, two can't be wrong. When I read your first ever post I comented about it but I don't think you received it! I couldn't believe what I was reading and thought that sounds just like my assessment.
    I will let you when I have anymore news. Take careX 
  • nikkij83
    nikkij83 Community member Posts: 42 Connected
    Hi justg72 

    Im ok had a few complex seizures this week. Hope you are ok.

    No news yet it will be 4 weeks this tuesday coming so hopefully will get something soon. Not looking forward to it as i think with the report she did i wont be getting anything.

    I dont mind you mentioning it to your MP. I am going to have to sort my appeal notes, specialist nurse letter out sometime over weekend/next week. Struggling to find the time.

    My nurse has agreed to do me a letter regarding my epilepsy, what happens during and after my seizures and how its effecting me. Hopefully this will help and i will contact my MP too.

    Ive got the email for the epilepsy pledge to do also that you mentioned last time. 

    Any help would be great, its all new to me and struggle to think straight best of times x
  • justg72
    justg72 Community member Posts: 173 Pioneering
    Hi Nikki
    I have never had to do this before I have passed and scored enough. Well I will mention you and tell how identical our assessments were and on how were getting compared to her husband which is not right at all. My nurse agreed with me, she also said she didn't know the assessor but the assessor said different she said she knew her. My friend who came with me for my F2F assessment read your post and thought I had wrote it, there are identical in what got said in every way its unbelievable how many more has she compared her husbands condition to others I would love to know.
    Like I said I will let you when I have any news. x 
  • Waylay
    Waylay Community member, Scope Member Posts: 973 Pioneering
    @nikkij83 and @justg72 I don't have epilepsy, so if this is inappropriate, please tell me to go away. 

    I have chronic pain, which includes acute muscle spasms in my left lower back, buttock, hip, and thigh. They happen a lot, and I can't predict them. Some of them aren't too bad (6/10 pain, can call taxi, then walk a short distance (10m?) to it), but some are horrendous (9.5/10 pain, collapse onto ground, can't stand, walk, etc.). I'm always on 50-100mg of tramadol (and a variety of other things), but when I have a spasm out of the house, I usually have to take tramadol 150mg, and a big dose of diazepam.

    I usually can't get very far without a taxi, but when my back is more functional, and my anxiety/depression are behaving, I can q


  • Waylay
    Waylay Community member, Scope Member Posts: 973 Pioneering
    Oops, kitten love attack. Sorry :)

    So when I can get out, I'm so anxious, because if I have a bad spasm, I'll end up in the ground in a public place, unable to move, out of my skull from pain, and I basically have to depend on some stranger to stop and help me, and then trust them, and then the taxi driver, not to take advantage of me when I'm physically completely dependent and mentally screaming/drugged to the nines. 

    I don't go out much. 

    Got 0 points on PIP.
  • justg72
    justg72 Community member Posts: 173 Pioneering
    Hi Nikki
    How are you? hope you are OK.
    Have you seen the front page of the telegraph and argus today! its all about the PIP and people losing their benefits who are disabled. If you can get out to get one its well worth the read,wouldnt your husband be able to go to the shop for a TA? it states that a labour MP is disgusted on how people who are disabled are been treat losing all their benefits leaving them financially living in poverty. I have been contacted by the MP again with a contact number now so I can ring them which I will tomorrow. See if you can get a TA and lets us know what you think?xx

  • justg72
    justg72 Community member Posts: 173 Pioneering
    Hi Wayley
    I think I understand what you mean about your condition, it affects you differently from day to day which is the same with epilepsy. When I haven't had a seizure, I am OK, but when I have I wake up on the floor, dont know where I am, I cant walk, I am confused, I dont understand what people are saying, and when I do talk none of it makes any sense. It can take ages to come around and then all you want to do is sleep because it takes it out of you. Many household tasks which need to be done daily eg cooking, ironing, bathing etc I can not do these things by myself and need supervision at all times doing these tasks because of safety. The assessor said I was fine at everything which is not true.
    Last year I had ran a bath and got in it, my son was outside the bathroom listening out for me and talking to me to make sure I was OK, which was a good job as I had a seizure in the bath and nearly drowned. My son noticed I had stopped talking and heard a lot of splashing he knew there was something wrong he found me under the water having a tonic clonic seizure. He pulled the plug out and held my head above water to stop me from drowning. So when they say what are the chances of somebody having a seizure when completing daily tasks, from a safety aspect, I will never get a bath again. The assessor put on my report that I could bathe unsupervised! Its so wrong how people who are genuine are losing benefits because an assessor says so in the brief time they see you on that day. The day I was assessed I hadnt had a seizure if I had, it would be totally different. This is what I will be putting in my MR.   
  • nikkij83
    nikkij83 Community member Posts: 42 Connected
    Hi justg72 

    I have just read it. One of the MPs mentioned is the MP i will be contacting regarding the pip pledge.

    Im off work now on leave so will be concentrating on my pip appeal etc. I havent got a decision yet but i already know what it will say.

    One of the things the assessor put in my report is that im ok memory and thinking etc because of where i work! My whole working life has changed. Had to reduce my hours, decreased work load and cant do the complex cases any more. Even due to time off with seizures i am under a sick review at work.


    Hi Wayley

    Thank you for sharing your experiences with pips. Have u appealed the decision?
  • justg72
    justg72 Community member Posts: 173 Pioneering
    Hi Nikki
    If you do not mind can I ask what job you do?
    I would definitely get your MP involved especially when its one who says the system is a shambles. Hes going support you and will probably be disgusted on how you have been treat by the PIP.
    Like your comment above about your sickness been under review thats what happened to me then I lost it through ill health.   
    I would try and hold on to your job if you can because I have applied for many jobs supporting pupils with behaviour issues and have not been successful. They say they do not discriminate against people with disability's, but I know they do my specialist doctor agreed with me. My doctor said at the moment I am not fit for work because of the number of seizures I am having on a daily basis, however I can not survive on what benefits I am receiving now so I am in a catch 22 situation. I am having to look now but my specialist doctor will probably say I am not fit she may refuse to write me off sick, so I dont know what I am going to do. Seems to me DWP do not give a s...about disabled people, there making it impossible for people to receive benefits they deserve which leads to people suffering more and not been able to survive so they give up and try and get a job. I really do not know what I am going to do I will put an MR in see where this takes me.xx 
  • nikkij83
    nikkij83 Community member Posts: 42 Connected
    Hi justg72 

    I am a civil servant  (tax side) been employed with them since leaving school. Alot of things at work have had to change since i was diagnosed with epilepsy.

    Im going to get the ball rolling this weekend with MP, nurse and MR etc. Still nothing from dwp yet though 
  • justg72
    justg72 Community member Posts: 173 Pioneering
    Hi Nikki
    Hope you are ok
    Yes do not blame you getting the ball rolling with MR because if the DM goes on the assessors report you will not be getting PIP. I have been in contact with epilepsy action about the PIP Pledge, I have had a response because I emailed them to tell them that an MP is looking into my PIP. I also mentioned the assessor comparing us to her husband they agreed that this shouldnt be allowed and was disgusted that this had happened he said I hope you are putting a complaint in regarding this matter. This will be getting done as well, when I have completed my MR I will be sending a follow up complaint as I have already complained and they are not doing anything about it. Good luck writing your MR. I will let you know when I have any news.xx
  • justg72
    justg72 Community member Posts: 173 Pioneering
    Hi nikki
    How are you hope you are okay
    Any news yet? hows your MR coming on because if you are struggling like me I have found a brilliant site which could help. Its on the epilepsy society site called the pip assessment criteria assessment tool. It shows all of the daily tasks and gives really good information on how to complete your MR, I have been using that to do my MR which I have started, my nurse is going to look at it and help as well. My MP has contacted the DWP about my PIP so I am waiting  for DWP to reply to him. I hope this makes a difference as I do not know what to do.I can not live on the benefits I am receiving now its an impossibility and my doctor said she will not give me a fit note so I am in a catch 22. This has really impacted on my seizures with all the stress I am having 3 seizures a day because of this. I can not believe you did not score more on your assessment especially because you have been recently diagnosed with epilepsy. I think her mind was already made up before I went into my assessment!  I will let you know when I have any news, hope you are having a good holiday off work.xx
     
  • nikkij83
    nikkij83 Community member Posts: 42 Connected
    Hi justg72 

    No nothing from dwp yet has been 4weeks today.

    I have written to my nurse and MP today though so thats sorted. I dont know what ive scored yet as nothing back from dwp but like you she had already made her mind up.

    I havent started my MR yet as thought i could wait until dwp write to me. Do they tell you why you havent been awarded? So you can challenge them on those areas?

    Yes if you can give me the details of the site your using that would be good.

    Sorry to hear you are having daily seizures, why wont your doctor give you a sick note?
  • justg72
    justg72 Community member Posts: 173 Pioneering

    Hi Nikki

    This is the link its really good and gives fantastic advice: 
    PIP aPDFssessment criteria APR 2017.indd - Epilepsy Society
    https://www.epilepsysociety.org.uk/system/files/.../PIPassessmentcriteriaAPR17_54.pdf

    My doctor will not write me off as fit for work thats what I meant, i am going to see her on the 14th of June so I will be discussing this with her.
    When you receive your final decision  report the DM points out what you have scored for the different daily tasks, this will enable you to disagree and then put why you think the decision is incorrect. Take a look at the link I have sent it shows you how to disagree by putting down how your epilepsy affects you, this prevents you not been able to complete tasks in a safe, consistent and timely manner. If you have any trouble with the link I put into google: help sheet for PIP and epilepsy daily living and its the third one down.
    Good luck with your MPxx

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